Volume 6, Issue 1: Article 1

Inclusion of Developmental Disability Nursing Content into Undergraduate Nursing Education: A Renewed Call for Pediatric Curricula Reform

Kathleen Cervasio, Ph.D., Ed.D, ACNS-BC, CCRN, RN



Children with developmental disabilities are cared for in a variety of healthcare and community settings by registered nurses. There are sixty million persons in the United States with some form of disability, a phenomenon unparalleled in history1. The number of children with developmental disabilities will continue to increase with the application of scientific and technological advances as we continue to perfect saving the lives of premature infants and acutely ill children. Is nursing education meeting this challenge?

Nursing education must be aligned with trends in current pediatric practice. A renewed commitment to this vulnerable population necessitates all schools of nursing include significant developmental and intellectual disability content including clinical practice into undergraduate nursing curriculum.



Nursing has and will continue to play a pivotal role in caring for children with developmental disabilities. Most schools of nursing in the United States provide the student nurse with entry-level knowledge, skills, and competencies to care safely for patients in acute care hospitals. Maternal Child nursing curricula has seen little change despite enormous growth in the field of infant and pediatric care. This paper provides an overview of developmental disabilities in infants and children, presenting the need for curricula and policy reform2. Public policy represents the attitudes and values of society that must be congruent with nursing education. Professional nursing education needs to embrace the specialty of developmental disabilities in children and across the lifespan.

Developmental Disabilities

A developmental disability is defined as severe, chronic, mental, or physical disability that manifests before 22 years of age and is likely to continue indefinitely3. A disability that results in substantial impairments in three or more areas of major life activity, for example, walking, talking, or eating, requires specific therapeutic services. The term developmental disabilities typically encompass intellectual disabilities. The most common disabilities seen in practice today are cerebral palsy, autism, and epilepsy. Children with developmental disabilities require individualized and coordinated extended services, supports, and assistance to function safely in society. The trend in healthcare has shifted needed disability services for these children away from institutions towards inclusive community care settings4. The coordination of this care is directed towards the child and family, enabling caregivers’ flexibility and control in their lives. Children with developmental disabilities require many advocates to seek out needed medical and nursing care, therapies, education, and equipment to assist them to gain entry and sustain functionality in life arenas. Approximately 13% of children in the United States have some forms of special needs5.

The Surgeon General’s Conference on Health Care Disparities and Mental Retardation produced a report, Closing the Gap, to examine the access and quality of medical services for this population6.

Excerpts from this report revealed the following key elements:

  • Deficiencies in health status compared to the general population
  • Difficulty finding, accessing, and paying for healthcare compared to the general population
  • Difficulty securing healthcare providers who are willing to care for individuals in this population
  • Lack of training and experience among physicians and other healthcare providers in caring for individuals in this population

The goals of this conference were clearly defined to improve health care access and care for the developmentally delayed patient. The action plan consisted of six goals, one of which is the integration of disability content into both the didactic and clinical education of healthcare professionals7.


Developmental Disability Nursing

The specialty of Developmental Disabilities Nursing is based on developed Standards of Practice and Standards of Performance based on a core curriculum8. The term developmental disabilities apply to children who are developmentally delayed, medically fragile, intellectually challenged, or learning disabled. Within each category of disability lie extensive lists of syndromes, needed assessments, knowledge, therapies, and resources to care for this fragile population. The field of developmental pediatrics and neurodevelopment disabilities is positioned as a formal nursing subspecialty. Societal changes have empowered persons with intellectual and developmental disabilities to more fully participate in community life. Nurses in all practice settings are finding they must be prepared to provide nursing care, support, training, advocacy, and leadership as these children mature into adults and are fully integrated into all aspects of community life. In most cases, undergraduate education for nurses does not adequately prepare nurses in the area of developmental disabilities. Knowledge and skill have been achieved by nurses through years of practice in this specialized area of nursing and by active participation in their specialty organizations and continuing education programs, such as those provided by the Developmental Disabilities Nurses Association9.


The State of Pediatric Curricula in Undergraduate Schools of Nursing

Traditional pediatric nursing curricula in schools of nursing are focused on the nursing care for healthy children who experience the most common illnesses and injuries. The clinical rotations for nursing students are generally in tertiary care hospitals on pediatric units, which continue to experience a low census10. The timeframe for pediatric nursing didactic and clinical experiences has changed very little despite the enormous growth of knowledge in this field. Although there are no nursing studies on content analysis of pediatric nursing curricula or length of clinical rotations, a self-reporting mechanism is available at professional meetings and networking opportunities on the undergraduate level for faculty both locally and nationally. Currently the Pediatric Nursing Scope and Standards is under revision in an attempt to describe and define the many roles pediatric nurses fulfill in diverse settings into a unified document for clarity and continuity of nursing practice11. It is estimated 13% of the pediatric population is disabled; 25% are under the age of 18 years12. Inclusion of disability pediatric content in all nursing curricula is overdue.

Numerous studies speak to the lack of developmental disability content in nursing undergraduate programs since the 1990s, when disabled people documented their concerns of poor experiences with nurses and other healthcare professionals13. Nurses’ educational systems were criticized for sustaining an unsatisfactory situation that had not addressed issues of inadequate training and a value on dependency in patient care14. The social nature of disability and the lack of disability content in curriculum was absent in nursing literature15. As disability became more recognized as an equal-opportunity issue supported by anti-discrimination laws, professional nursing education began to identify the need for inclusion of disability-related content into the schools of nursing16.

International schools of nursing have been at the forefront of recognition and inclusion of developmental disability course content into nursing curriculum. The University of Sheffield in the United Kingdom measured student nurse learning needs in the rehabilitation phase of care for children with developmental disabilities17. The outcome evaluation found that curricula deficiencies resulted in students’ lack of knowledge in core elements essential to their provision of care for this population. The lack of statistical significance focused further research into the areas of care models, environment of care, and the use of disability-credentialed specialty nurses as leaders of care. The development of a standardized syllabus delineating specific disability content and clinical experiences within an abilities framework needs to be incorporated into a revised infant, pediatric, and family curricula. Faculty holds responsibility to prepare future professional nurses competent to care for this population.18

The Universal College of Learning in New Zealand introduced a focused course on disability in their undergraduate nursing curriculum in 2002 because of the global changes in the way people with disabilities were being viewed in society. This response in nursing reflected an understanding of the impact that an inclusive and growing disabled society required in terms of nursing services, which include the provision of care and coordination in the community setting.19 It is relevant that many of the gains of the disabled in society have resulted from economic climates that have forced health care costs to escalate, thus driving care away from institutions and towards the community.20

In the United States, disabled people report dissatisfaction with health care professionals and the education systems. A descriptive study examined how nursing schools integrate disability content into curriculum. A 27-item questionnaire with questions that focused on curricular content, specific disabilities, teaching methods, and resources used to teach nursing students was sent to 1,000 schools of nursing. Responders stated some disability data was included, and textbooks were the most common teaching method. Barriers to disability inclusion into courses were stated as the lack of time, interest, or expertise in the faculty.21 Further comments from faculty on disability assessment in patients identified the lack of effectiveness in teaching methods, far too little time, and the need for more important content to prepare students for the NCLEX.22This researcher would hope the results of this study would serve as a stimulus to increase the extent and breadth of disability content issues in nursing curricula.

The revised Pediatric Nursing Scope and Standards document of pediatric nursing practice will identify the need to include disability content in all curricula and act as the impetus to attain this goal.23


The Future of Maternal Child Curriculum

Developmentally disabled children increasingly receive nursing care outside of the hospital. Nursing plans of care occur in the community, outpatient facilities, schools, and homes.24 Future care for developmentally disabled children will be personalized and environment specific. Nursing care will be measured by outcomes such as inclusivity, productivity, and independence in patient care. Maternal child nursing will encompass specific competencies in the areas of developmental, intellectual, and learning disabilities to augment patient care within a framework of cultural specificity of the child and family. The didactic reform of maternal child curricula must be the foundation for clinical practice. Pediatric nursing students’ clinical rotations should include private and public schools, early intervention centers, organizations for children with developmental disabilities, outpatient settings, community health settings, and specialty hospitals.25 An expanded vision for nursing maternal child curriculum needs to include developmental disabilities, education law, school health, speech and language issues, motor sensory issues, advocacy, and funding sources to groups facing disparities in healthcare. There is a need to provide care and resources, and manage and coordinate care efficiently and effectively in a time of increasing chronicity in healthcare. Family or caregiver involvement and teaching tools are the methods that will assist nurses in caring for disabled patients. The model for practice must be one of ability for patients supported by positive, knowledgeable registered nurses who take the time to find the solutions for children and their families26.

Nursing Specific Disability Competencies

The triad of concepts key to nursing practice is the professional nursing knowledge, assessment, and skill. Competencies are an indication of the capacity of the professional to integrate knowledge, values, attitudes, and skills in the world of practice.27 Competent registered nurses use these concepts to utilize specific patient information to develop a plan of care and an outcome evaluation of that care.

Table 1. is a proposal for categories that are essential nursing core competencies in caring for children with disabilities. The child with disabilities requires further assessments and recommendations for appropriate quality care in addition to the nurse’s knowledge of traditional maternal child nursing28. These core competencies augment safe, effective, and outcome-oriented nursing care based on standards of practice and years of clinical expertise.


Table 1. Suggested Nursing Core Competencies in Caring for the Developmentally Delayed Child
  • Communication skills include the working knowledge of augmentative communication devices, communication boards, basic sign language, and body movement.
  • Critical thinking skills consist of anticipated basic needs for comfort and safety.
  • Mobility skills incorporate the working knowledge of wheelchair adaptations, walkers, seats, braces, and standing devices.
  • Activities of daily living require accessibility of adaptations for eating, grooming, and toileting.
  • Education in schools necessitates individual accommodations for teaching and learning as well as collaboration with school nurses.
  • Sensory integration plans are essential for most children.
  • Behavior recognition and modifications require knowledge in various types of behavioral interventions.
  • Interpersonal skills are crucial to socialization and inclusion for all children.
  • Safety and cultural awareness are crucial elements in nursing care of children.
  • Resources in the community encompass inclusivity and quality of life.
  • Evaluation of core competencies completes the cycle of the nursing process.


The competencies of nursing practice are defined by the application of skills in all the domains of practice. Competency in nursing practice is the measureable outcome of individualized clinical experiences, course content, accountability, and assessment in a practice-based learning environment29. Competency has degrees of expertise inherent in the skills. For example, an experienced nurse is highly competent in a particular skill, and the student nurse may be minimally competent in that same skill. Competency allows for growth and development in a learning environment that is application oriented.


Table 2. Application of Competencies to a Case Study with a Developmentally Disabled Child

Case Study

The mother brings a nine-year-old girl who has been vomiting for 12 hours to the emergency room. V/Ss are B/P 100/60, P 110, T 100 axillary, and RR is 24.The child has dry mucous membranes, decreased urine, irritability, and is frightened. The child is developmentally delayed, non-ambulatory, uses few words, and has a history of febrile seizures. The child is admitted to the pediatric floor in the hospital. An interview with the mother reveals the child has cerebral palsy with quadriplegia, uses an augmentative communication device, uses diapers, has sensory and behavioral issues, eats slowly by mouth, and attends a special school. The nurse needs a history from the mother to identify disability-specific information. Additional information will be obtained by a nursing assessment. Physician orders include Tylenol rectally, intravenous therapy, NPO status, and V/S Q 2 hours, and start an intravenous with D5 ½ NS at 40ml per hour.

This nurse will need to ask specific questions surrounding the child’s disability to appropriately and safely care for this child. For example, the insertion of an intravenous line will require assessment to identify the best site, ability to relax the limb if spastic or contracted, and security of the line. Assessment must include sensory stimulation, behavior management, and concern for safety. Time and assistance with care may be necessary to accomplish a task.

Nursing competencies of children with developmental disabilities must recognize the child’s ability and behaviors. Every child is different, requiring an individual and personalized approach to nursing care focused on prevention of complications and promotion of health in safe environments.30 Children with developmental disabilities experience alterations in sleep patterns, elimination, skin, feeding, communication, somatics, emotions, behaviors, cognition, learning, sensory integration, and motor skills. The frustrations of the child and the caregiver need to be recognized and analyzed in a specific plan. Chronically ill children have experience with the healthcare system and the providers of care. The role of the professional nurse in patient education is an integral part of the care plan. Empowering the child and the family with education specific to the need promotes the health of the child and family, while averting complications. The following Table 3. is an example of a care plan for this child; it is focused on major elements of care.


Table 3. Nursing Care Plan
A. Safety
  1. Elevate head of the stretcher
  2. Side rails up/padded (children with cerebral palsy become spastic and get caught in rails easily)
  3. Never leave child unattended on the bed
  4. Equipment management
  5. Seizure and aspiration precautions
B. Medication Administration
  1. Use of appropriate mode of medication delivery (rectal suppositories may be necessary)
  2. Measurement for accuracy
  3. Appropriate administration route
  4. Time as needed
  5. Adverse reactions
C. Psychosocial Support
  1. Use of augmentative communication (devices assist in communication)
  2. Use of diagrams/sign
  3. Privacy and relaxation
  4. Continuity of care
  5. Reassurance and comfort
D. Prevention of Infection
  1. Aspiration precautions
  2. Teach signs/symptoms of the primary diagnosis (caregiver involvement assists in care)
  3. Teach signs/symptoms of infection while hospitalized
  4. Frequent hand washing
  5. Use of aspirator/ suction for mouth secretions (children with cerebral palsy drool and can choke easily)
E. Prevention of Complications
  1. Use of adaptive equipment (special wheelchairs, standers, or other devices for ADL’s)
  2. Hydration
  3. Weights
  4. Teach side effects of medications
  5. Turn and position hourly
F. Comfort/Promotion of Bonding
  1. Mouth care with a damp cloth
  2. Handling with support and positioning
  3. Optimal nutrition
  4. Nurturing
  5. Familiar person to stay


Competencies: How We Acquire Knowledge and Skills for Practice

The identification of competencies will direct the method of knowledge and skill acquisition. The competencies in essence drive performance appraisal of staff nurses. Evaluation of care allows educators to reassess the needs of staff in defining continuing, pertinent education in practice domains as represented in the illustration below.31

The information in Table 4. is an example of how nurses in the practice of caring for children blend pediatric practice with the specialized knowledge required to care for a developmentally disabled child.


Table 4. Pulling it all Together
PracticePromotion of a safe, secure, and age-appropriate environmentIdentifies the concepts of children’s growth and development appropriate for a special needs child as opposed to a chronological age categoryWorkshops on:
-differently abled and sensory toys
-use of augmentative communication device
-wheelchair belts, side rails up and padded
-frequent rounds
-decrease sensory stimulation in the environment, with a focus on sounds and lights
EducationImplementation of a conceptual framework in patient caringIncorporate a family-centered care model in collaboration with the primary care giverWorkshops on:
– recognize the primary care givers’ expertise
– provide teaching for informed decision making
– involve the care giver in acquiring new skills for care at home
CoordinationOrganization of time for therapist and teachers to treat the child while hospitalizedEnsure needed services are given with the development of a planed schedule for all servicesWorkshops on:
– perform follow-up evaluations with the family
– allow adequate time for treatments
– assure proper supplies and equipment is available and used properly
QualityRecognition of priority healthcare issues, requiring reassessment and consultation.Demonstrate expertise and safety at the bedsideWorkshops on:
– adaptive equipment
– sensory integration techniques
– behavior management
– muscle relaxation methods
– continuity of care with community health nurses at discharge


The development of a standardized syllabus that delineates specific disability content and clinical experiences with an abilities framework needs to be incorporated into a revised infant, pediatric, and family curricula. Faculty holds responsibility to prepare future professional nurses competent to care for this disenfranchised and underserved population.32 An abundance of resources for developmental disabilities includes videos and online courses as well as the expertise in the non-traditional clinical rotations. Workshops can be developed to support the education of nurses in the field of children with disabilities both in the hospital and community settings to provide a system of seamless landscape in nursing education. The faculties in schools of nursing are key catalysts in defining and refining all the aspects of nursing education required for inclusion of this fragile population.

Nurses need to be educationally prepared to care for children with disabilities. Baccalaureate nursing education assures student nurse clinical competency by upholding a moral imperative to keep patients safe by fostering a paradigm of demonstrating continual practice33. Nursing faculty are responsible for assessing student skill, knowledge, and attitude to care for children with disabilities. Curriculum in schools of nursing are focused on knowledge and skills in clinical courses; it is not clear how attitudes of nursing students are conceptualized or measured as an outcome of nursing education. Attitude plays an influential role in the quality of clinical services rendered by healthcare professionals34.


Table 5. The Cycle of Faculty Influence




Significant content for developmentally delayed children must be a core requirement in pediatric nursing curricula. Nursing curricula should reflect the health care needs of society; it is our social contract with those we serve. Developmentally delayed children have a variety of motor and sensory issues, from cerebral palsy to autism. This population continues to grow not only in numbers but also in specific nursing needs regardless of environment35. In an era focused on disparities in health care, these children, and their families, need a voice. Can we meet the proposed Healthy People 2020 recommendations?36 Are professional nurses prepared for this challenge now and in the future?

Nursing faculty can utilize critical pedagogy and disability studies as a framework to support practitioners in their role in caring for children with disabilities37. Critical pedagogy describes and portrays the social context of education as an empowering process to make choices and influence the world38. The key to this framework shifts disabilities from a needs-based service to a strengths-based service when faculty designs curricula, which is hypothesized to shift attitudes in education towards the positive end of the spectrum. Faculty are one of the most important variables affecting the education of professionals who will care for children with disabilities39.



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Kathleen Cervasio, Ph.D., Ed.D, ACNS-BC, CCRN Emeritus, RN, has more than 38 years of nursing experience and holds certifications as a critical care nurse and a clinical nurse special in medical surgical and critical care nursing that encompasses both adult and pediatric practice. A pioneer in critical care nurses education, she has taught courses to thousands of nurses over the decades in New York and New Jersey. Both the New Jersey Nurses Association and the Assistant Surgeon General of the U.S. have honored her as a Nurse of Distinction in the evolution of the role of clinical nurse specialist in the federal health sector. She is active in community organizations and sits on numerous boards for nursing curriculum and as a consultant in NCLEX review courses. Her area of research is children with special needs; she has numerous international and national articles and a book chapter pending publication in this field. She has developed a blended course for Children with Special Needs, has developed a tool to measure attitudes of nursing students towards children with special needs, and is currently gathering content validity.

Dr. Cervasio has taught a variety of courses, including pathophysiology, pediatrics, and medical surgical nursing. She currently is the coordinator and lecturer for community health nursing, a blended elective course on Children with Special Needs, and independent study students. Her passion is caring for children with disabilities; she is the mother of disabled twins.

Dr. Cervasio is an Associate Professor of Nursing, School of Nursing, Long Island University, Brooklyn, New York

Volume 5, Issue 1: Article 1

Evidence-Based Practice with Community Participation: Select experiences with patients with spina bifida and sickle cell disease

Robin R. Leger, Ph.D., RN, Linda Wagner, Ed.D., RN, and Victoria Odesina, MS, PHCNS-BC, APNG



This article will use select experiences in patients with spina bifida and sickle cell disease to illustrate sources of evidence-based practice. Four sources of evidence that can be appraised when developing clinical and/or public policies for individuals with intellectual and developmental disabilities include: published research, clinical knowledge, patient and family experience, and local data. Community-Based Participatory Research is defined and promoted as both a principle and method. A lifespan approach to clinical research in two populations will highlight examples of mutual mentorship, collaboration across disciplines and agencies, and the development of clinical practice guidelines, protocols, and policy development.



Nurses with expertise in intellectual and developmental disabilities (I/DD) can play key roles in the design, implementation, and dissemination of evidenced�based research in this area of health care. Nurses gain expertise in I/DD from a wide variety of practice environments and contribute skills and knowledge in collaboration with other disciplines, and across settings and agencies to enhance and improve the care of people living with I/DD. Inter-disciplinary collaboration allows for rich input into the identification of research questions and lends capacity to implement protocols, build data base and registries to support outcomes, and disseminate practice recommendations broadly. Mentoring can provide opportunities for students and colleagues to work together and can be beneficial in identifying new and supporting evidence and further research strategies.

This article supports the premise that there are multiple sources of knowledge that inform evidence-based practice to encourage the development of best practice through the establishment of diverse research teams, mentoring students, promoting community-based participatory research (CBPR), and dissemination efforts. A select review of related concepts and measures used in I/DD research will be identified. The authors will share their experience in collaborating on research programs of study with a lifespan approach to developmental disabilities, in particular with individuals living with spina bifida (SB) and sickle cell disease (SCD). The challenges, opportunities, and use of evidence for changing clinical care, community roles, and policy formation will be highlighted.


Evidence-based practice

Evidence-based practice has emerged in recent years as a way to provide optimal patient care through application of the best available research findings. Research based on clinical issues has continued to inform changes and improvements to patient care. The formal process of examining a body of research, critical review of the findings, and development of clinical guidelines or protocol development has led to improvements and changes at the bedside and into the community over the years. Sigma Theta Tau (1), the International Honor Society of Nursing has established a position paper on evidence-based nursing (EBN). It defines EBN as “an integration of the best evidence available, nursing expertise, and the values and preferences of the individuals, families, and communities who are served.” This definition works well within the philosophy of care across the lifespan for individuals and families with I/DD wherein, nursing, family, and community-based organizations (CBOs) expertise are integral to investigation, analysis, dissemination, and provision of the best possible care.

There are a variety of terms that have been used in nursing practice over the years that involve reviewing research for its application to nursing practice. Best practice and clinical practice guidelines are two terms that may be familiar. Professionals who work to advance health care face increasing expectations that the care they provide is clinically effective and cost efficient. Studies are reviewed for their contributions to change and improvement of practice. In evidence-based practice, a clinical question is identified, a search is performed for the best evidence to address clinical problems, and an evaluation/integration of the findings is done along with integration of clinical expertise, patient input, and existing resources (2).

There are several models that can guide utilization of evidence-based practice. The Iowa model (3) and the Stetler model (4) are two of the more common models used in clinical practice settings to guide research utilization at the bedside (2). Both models have been updated over the years and offer specific steps to facilitate research adaptation to bedside practice. A challenge to implementing evidence-based practice is the ability to influence change to improve care. Both the Iowa model and the Stetler model emphasize steps in the process that address applying the research to practice. This involves influencing practitioners and the organization to change well-established procedures. While change may be difficult to implement at the organizational level, it may prove even more of a challenge to individuals and families in the community setting (5).

Rycroft-Malone and colleagues (6) write a compelling piece challenging professionals to consider four sources of evidence when evaluating for best practice and the nature of evidence. These four sources are listed as research, professional knowledge/clinical experience, “local” data and information, and patients’ and caregivers’ experience and preferences. They state that “[t]he delivery of individualized evidence-based health care not only requires professional craft knowledge and reasoning, but requires such knowledge and reasoning to integrate the four different types of knowledge discussed here within the contextual boundaries of the clinical environment” (p.84). Rycroft-Malone and colleagues defines craft knowledge as knowledge gained through clinical and life experience (6) The examples provided in this discussion are drawn from the expertise of the client/family and community resources as well as the expert knowledge of the professionals and available research to create the context of “person/patient-centred” evidence-based care.

Sensitivity to the cultural, social, and economic contexts that affect individuals with developmental disability is imperative to synthesizing the empirical evidence used to improve care. Nurses whose focus is caring for children have developed a clinical expertise that, when integrated with best practice research, are in a unique position to advocate for optimal care for individuals with I/DD and their families in the context of their day-to-day life. The authors have found that a consideration of the four aspects of the model described by Rycroft-Malone and colleagues offers an alternative to the more standard models such as the Stetler and Iowa models described above. A key to increasing the application and dissemination of research findings is to involve key constituents. This is where community-based participatory research (CBPR) may prove beneficial.


Background and Significance

Individuals and families whose lives are impacted by disability are under-studied as noted in the Americans with Disability Act, 1990, PL 101-336 and by the World Health Organization (7). There has been a growing need for a lifespan approach to pediatric onset disability with a framework that is continuous (8) and assessment tools that carry forward from the pediatric culture and are understood by adult health care providers to whom they will be referred (9). As more people with I/DD survive into adulthood, it has become clear that for many this transition, including the transference of care to adult health and community-based services, is problematic. For many people, this period results in a potential loss of follow-up care, leading to exacerbation of conditions or new secondary disabilities that co-exist with the adjustments to new sources of services and funding.

Spina bifida and sickle cell disease are conditions with high risks for intellectual and developmental disabilities. Both are genetic, chronic health conditions with risk for secondary health problems (such as neurological, orthopaedic, renal, and pulmonary complications), unanticipated exacerbations of conditions, hospitalizations, and the need for complex management that may delay growth and psycho/social/educational development. Approximately 85% of people living with SB have associated hydrocephalus, which often requires shunting that can lead to associated learning disabilities and/or cognitive impairments (10). Motor disabilities in SB are due to spinal cord impairments (potentially requiring adaptive equipment such as crutches, braces, wheelchairs, etc.), and issues of bowel and bladder incontinence lead to difficulties in achieving psycho-social-recreational and vocational goals.

SCD is a condition where the risk of associated disabilities increases with age. Available evidence suggesting that the quality of health care and prevention is substandard due to lack of knowledge and challenges accessing services. Sensory, mobility, and/or cognitive impairments create barriers to the chronic care that people with SCD and disabilities often need. The incidence of stroke in children with sickle cell disease due to vasooclusive episodes is 8%, and unknown silent infarcts or micro strokes may lead to decreased neurocognitive development and declining IQ scores in those living with SCD (11). Despite the need for early recognition and management, cognitive impairments, neuro-psychological dysfunction, or abnormal findings on magnetic resonance imaging were noted in nearly two-thirds of 138 adults, with one third having IQ scores below 86. This was identified as a major contributing factor for non-adherence to treatment regimens (11). Pubertal changes with increased physical demands, school absenteeism, social isolation, and stigma of illness are among other components that make living well and growing into adulthood with SCD or SB a challenge.

The Spina Bifida Association; the Sickle Cell Disease Association of America; the Genetic Alliance; the National Heart, Lung, and Blood Institute; the U. S. Department of Health and Human Services, Health Resources and Service Administration (HRSA); Maternal and Child Health Bureau; and consumer, family, and professional organizations, along with other associated professional and consumer organizations worldwide have made the understanding of the health and social needs of young adults with chronic disabling conditions a priority. The American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians-American Society of Internal Medicine published a position paper in 2002 on the transition issues of adolescents with special health care needs (12). In a consensus statement, the three medical boards contend that adolescents and young adults “with severe medical conditions and disabilities that limit their ability to function and result in complicating social, emotional, or behavioral sequelae experience difficulty transitioning from child to adult health care” (p. 1304). These position statements, though limited in empirical data or specific strategies, are valuable as they identify a priority for health care research and delivery.


Research Strategies


Interdisciplinary and Interagency Collaboration and Mentorship

Whether looking at research in the literature to help appraise current practice, implement new practice guidelines or policies, or formalize research questions in the practice arena, individuals or teams need to reflect on the opportunities, resources, potential partners, and obstacles in their environment. Strategies for evidence-based practice can rely on the universal and timeless questions:

  • Who? – research team
  • For whom? – individuals, families, or communities; sample or population
  • What? – evidence: problem, best practice, phenomenon, experience, etc.
  • So What? or Why? – Will the results obtained matter or make a difference? Is the study worthy of time, resources, or effort?
  • Where? – clinical environment(s) or community(ies)
  • When? – timelines
  • How? – methods, finances, and dissemination

Collaboration with different disciplines – among nurses using a consortium model (13), with students, or across agencies – brings together individuals with a variety of skills and resources who can share the work, the joys, and the frustrations. Meleis and colleagues (14) posit that “collaborative mentorship is an active, dynamic approach that demonstrates solidarity …the features of collaborative mentorship are: negotiated relations, mutual interactions, facilitative strategies, and empowerment” (p. 179). Mutual mentoring across disciplines and agencies allows for true collaboration and for evidence to be shared and validated. Using this collaborative model is a complex activity that necessitates awareness of the multiple ways of considering evidence to improve care. The following sections will discuss some of these considerations.


Community-Based Participatory Research (CBPR): A guiding principle and methodology

The community is a group of people sharing a common health interest but not necessarily a particular geographic association (15). To an outsider, it may seem that patients with chronic and developmentally disabling conditions receive most of their care in the health care setting; however, the patients’ communities provide the majority of the health care management and support services. The patients’ communities in this context are the people providing care to the patient around the clock and over extended periods: care givers; family members; school systems; advocacy groups; social workers; community-based organizations; advocates; home care/health assistants; and religious/spiritual support members.

Community-Based Participatory Research principles and methods are particularly well suited to nurses interested in EBP in I/DD because the approach aids in addressing the problems of health care disparities and breaks down the barriers between researchers and those being researched (16). It is an approach that empowers participants, enhances the capacity of CBOs to function as co-investigators, and potentially leads to sustainability of initiatives. CBPR also positively affects the quality of evaluations because community input leads to the development of culturally appropriate measurements and instruments and fosters a mutual trust that enhances the quantity and quality of data (17). A variety of quantitative, qualitative, and/or mixed methods can be used in both undertaking research and in evaluating the CBPR process (18).

The National Institute of Health has recently promoted a new roadmap, “Blue-Highways,” identifying that practice-based research; the use of practice-based networks may be the best setting and process to study questions related to chronic health conditions (19). Enhancing treatment services across health care delivery settings; emergency departments, hospitals, primary and specialty care clinics or community environments will only occur on a sustained basis if the community affected by I/DD is empowered to play a leadership role in the planning, implementation, and evaluation of services.


Research Methods


Qualitative Inquiry

Qualitative research is a primary tool that may be used to explore the experience of adolescents or adults with I/DD and their significant others/caregivers. Grounded theory as a research methodology seeks to understand a social process in the participant’s own terms and has direct application to the participants involved (20). In addition, factors such as focus on human experience, careful attention to the context of human behavior, and data-rich description yield additional support for a qualitative approach (20). It is not the intent of a qualitative study to test a hypothesis, but rather to generate a conceptual or theoretical model that explains the experience under study (2).

Qualitative research occurs in the environments in which clients and families live. Collaboration with community-based organizations affords the opportunity for health care professionals to develop relationships, build trust, and illicit support for participation. Interviews and observation often take place in the clients’ home or community. Qualitative research in the area of I/DD informs practice through attainment of a greater understanding of what children, adults, and families’ experience. Phenomenology is another qualitative methodology whose focus is the understanding of one’s experience. Since children with I/DD are often overlooked by clinical researchers for a variety of reasons, both grounded theory and phenomenology as qualitative methods provide health care professionals with a richer understanding of what families and individuals with a disability experience on a day-to-day basis.

The current trend toward the use of evidence-based practice in health care settings has called into question the significance of qualitative research in the hierarchy of different levels of clinical evidence Several authors (5, 21, 22) have begun to address the complexity of several “ways of knowing,” one of which includes qualitative research. Parse (21) recognizes that findings from qualitative research studies “offer different information from the standardized information that counts as evidence for the extant evidence-based practice scenarios” (p.47), while Jack (5) advocates for both quantitative and qualitative research in the public health setting to improve practice and address complex social and health issues.

Wagner and colleagues are currently conducting qualitative research in CBOs about the experiences of young women with sickle cell disease as they transition to adulthood and the effects of the transition on the women’s families. Similarly, medical students under the guidance of Leger and Wagner are conducting a study about the transition experiences of youth with chronic physical and developmental disability. The CBOs’ collaboration to identify clients and work with researchers to support the design and successful completion of the studies will help to ensure relevant results.


Quantitative Concepts and Measures for Use in I/DD

A number of approaches and databases are available to those who are conducting literature searches to identify potential research instruments or to support practice (23). One useful database, Health and Psychosocial Instruments (HAPI)© under Ovid Technologies Field Guide, will, for example, search the literature only for articles that have used measurement instruments such as questionnaires, surveys, checklists, rating scales, etc. (24). The search will identify the instruments, authors of the instruments (original source and year first published), means of locating the instruments, and key elements such as sample characteristics and other related measures. One can also search by concept (“hope”), condition (“spina bifida”), and/or run a combined search to cross reference for measures that may then be evaluated for applicability to one’s research project or current practice. The following are lists of concepts that can be entered as keywords or phrases (with and without specific I/DD conditions) for use in conducting a search to support clinical practice or a new clinical investigation.

Physiologic Measures (select):

  • Vital signs
  • Growth and development
  • Improved functional status; ADLs; range of motion; strength (power); gait; ambulation
  • Clinical measures; laboratory values; function studies (pulmonary, renal, orthopaedic, neurological); diagnostic imaging; pain; oral and dental health; etc.
  • Secondary conditions and comorbidities (as confounding or contributing variables)

Quantitative Measures of psychosocial patient and family concepts (select):

  • Quality of Life (QOL) or Health-Related Quality of Life ( HRQOL)
  • Functional status
  • Health status or Severity of illness
  • Emotional health status or wellbeing
  • Family functioning; stress; resources; social support
  • Pain
  • Symptom management
  • Self-concept
  • Satisfaction
  • Attitudes (individual, family, or staff)
  • Performance indicators: academic; vocational; employment; athletic and/or recreational
  • Stigma
  • Uncertainty
  • Hope


Select Measures: Examples and Applications of Evidence-Based Practice


Example 1. Latex allergy survey in spina bifida: From rare phenomenon to global policy and practice changes

A nursing consortium, the North East Myelodysplasia Association (NEMA), discussed anecdotal accounts of latex allergy experienced by patients in their clinics and one published report of anaphylaxis in two patients (25), which prompted five nurses to survey their spina bifida clinic populations on the incidence, experiences, and symptoms related to latex allergy. The results of this survey indicated the phenomenon was not just a few anecdotal experiences or case reports but a far more prevalent and life-threatening condition needing immediate dissemination and action (26). The nature and prevalence of latex allergy among children and adults with spina bifida, items in the hospital and community environments containing latex and safe alternatives, routes of exposure, and risks for health care providers, informed latex allergy policies and practice changes (27, 28). Nurses were key leaders in the evidence-based practice changes that prompted additional research and the implementation of latex-safe products in hospitals and community environments worldwide.


Example 2. Stigma in adults with sickle cell disease and as experienced by their families

Growing up with a disability that may be “visible” or often “invisible,” which may affect an individual’s growth and development (29); motor speech or sensory function; ability to perform activities of daily leaving; or risk of hygiene or incontinence problems can lead to stigmatization. Young people with I/DD often display social and developmental delays as they may be more isolated from their able-bodied peers due to multiple hospitalizations, absences from school or work, or feelings of being different. The developmental delays or physical conditions may impair one’s ability to take part in the full range of activities of social, sexual/reproductive, and vocational mores. Issues surrounding stigma may also lead to problems with accessing services and/or providers. If stigma is defined as a mark of shame, disgrace, disease, or abnormality (30), then the goal for individuals is to receive support in overcoming the characterization of being discounted and achieve self-acceptance and a place in society (31).

The few literature studies that explore the concept of stigma discuss stigmas related to chronic health, disfigurement, and/or potentially life-threatening conditions such as in epilepsy (32, 33, 34). Panter’s investigation (34) describes the stigma of epilepsy as “often a daily companion.” The investigation results showed a significant negative relationship between stigma perception and an individual’s quality of life. In a recent study of 232 adults with SCD, the researchers refer to the condition as “stigmatizing” as they describe the impact of living with SCD leading to higher levels of depression (35). Adults with SCD who frequently experience acute or chronic pain identify that pain episodes are the leading cause for their experience of stigma, barriers to care, limitations in independence, and isolation, warranting the need for and dissemination of best practice guidelines (36, 37, 38). The authors have recently piloted a quantitative, self-reported study, Stigma in Living with Sickle Cell Disease Survey(s), of adults living with SCD and their family care givers in the United States and Nigeria. The data collected from these surveys are being used to implement screening, education, advocacy, and service projects in both countries (39).


Example 3. Health status, functional status, risks for secondary conditions, and health-related quality of life (HRQOL) in spina bifida and sickle cell disease

People living with I/DD may have corresponding complex conditions with multi-system manifestations requiring a lifespan approach to maintain their health status. As they age and go through physical growth and puberty, conditions may worsen, appear, or become life threatening, requiring new medical interventions and increased monitoring to prevent squealea (40, 41). The literature is inconclusive in defining health status or disease severity in many I/DD conditions. Some authors define health status or disease severity as relevant to a patient’s current status and or severity of one system (i.e., neurological, pulmonary, seizure status, or pain episodes in SCD). Others use a lifespan or predictive model with a holistic focus that defines health status or disease severity as a multi-system condition with further risks for disability.

Recently, initiatives have focused on a lifespan approach to living well with a disability. The Centers for Disease Control and Prevention (CDC) has reintroduced this mission to promote health and quality of life by preventing and controlling disease, injury, and disability by opening The National Center for Birth Defects, Developmental Disabilities, and Disability and Health in the fall of 2002. The center uses a lifespan model and provides an integrated forum for organizations and researchers concerned with disability. The two primary goals of the United States national health promotion and disease prevention framework, Healthy People 2010 are to increase the quality and years of healthy life, and to eliminate health disparities (42). Specific objectives within this framework address risk for youth with disabling conditions and the need for research on preventing secondary conditions, promoting health, and improving or maintaining HRQOL. Several prediction models of health and functional status, and health-related quality of life are examined in the nursing literature (43, 44), medical literature (45, 46, 47, 48, 49), and dental/oral health literature (50, 51, 52, 53, 54).

Despite these recent initiatives, a number of comprehensive programs and nursing roles have been eliminated or downsized with health care redesign efforts. Healthcare costs associated with supporting multidisciplinary clinics that provide specialty care to I/DD populations have resulted in the closure of many clinics and the loss of nurse specialists’ or nurse coordinators’ roles (55). The establishment of transition programs to comprehensive, coordinated and a lifespan approach to care for youth and adults living for with spina bifida was undertaken by a team of nurses at three clinics in New England based on evidence in the literature and their clinical experience (56). Ongoing implications for research, development of systems for transitions across the lifespan, promotion of best practice models for caring for people with I/DD with goals of “aging well” and improving quality of life remain a priority for people living with spina bifida and sickle cell disease (56, 57).



Perry and Weiss (58) sum it up best when they state, “At the heart of it, evidence-based practice means that we question what we do so that we can help clients be the best they can be” (p.171). As health care services continue to demand accountability and quality for the care provided, it is even more imperative for a group of individuals who are often misunderstood (59) for nurses to advance interventions based on research and review of practice; to collaborate with other disciplines and communities of care; and to mentor our future colleagues in order to deliver excellent care and services.

The previous examples highlight that evidence was sought from a variety of sources such as research, professional knowledge/clinical experience, patient and caregiver experience, and local data information/communities of care (6). Likewise, the methodologies used to obtain further data and promote change in both clinical practice and policy formation are a mix of quantitative, qualitative, and community-based participatory research. This article has presented several venues for advancing best practices in the area of care for individuals with intellectual and developmental disabilities. It offers suggestions for a variety of ways professionals and communities can begin to work together to initiate practice guidelines, develop research proposals, or mentor and guide others. Decisions for care should be based on the collaborative, empirical efforts of individuals and communities whose ethic is to provide for the best quality of life possible for their clients and families.



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Robin Leger, PhD, MS, RN is a Research Facilitator, Department of Orthopaedic Surgery and Assistant Professor, Community Medicine and Health Care, University of Connecticut Health Center. Robin’s career has focused on the care, education and research of chronic disabling conditions across the lifespan. She is currently a clinical outcomes researcher at UCHC and was faculty at Yale School of Nursing and the director of the spina bifida program. She supports CBPR efforts locally and facilitates efforts globally.

Linda Wagner, EdD, MSN, RN is an Associate Professor and chairperson of the Department of Nursing at Central Connecticut State University. Her practice interest has focused on children and families with a research interest in transitions of children and families with chronic illness. She received her MSN in Nursing of Children from the University of Pennsylvania and her EdD from the University of Hartford in Educational Leadership.

Victoria Odesina, MS, PHCNS-BC, CCRP, APNG is a Clinical Research Associate, Program Manager, Department of Medicine and Instructor, Community Medicine, University of Connecticut Health Center. Victoria is the mother of two young adults with sickle cell anemia and co-founder of an advocacy organization called Citizens for Quality Sickle Cell Care, Inc. She is a board certified APRN in community health nursing, credentialed in advanced genetic nursing practice, and a clinical nurse specialist and author in SCD issues for more than 20 years.



Robin, R. Leger, PhD, MS, RN
University of Connecticut Health Center
E-mail: [email protected]

Nurse Practitioner Knowledge and Attitudes Regarding Developmental Disabilities Health Screening and Health Promotion

John Boisseau, MSN, APRN, BC, CDDN and Roseann Barrett, PhD, RN



This study was conducted to describe nurse practitioner knowledge and attitudes of developmental disabilities (DD) health screening and health promotion. Health promotion is an important part of disease prevention and health maintenance, yet it has been shown that people with DD often miss critical screenings such as colonoscopies, mammograms, and other recommended diagnostic procedures. A survey designed to describe nurse practitioner knowledge and attitudes of DD health screening and health promotion was created for this study and mailed to 200 randomly selected nurse practitioners from across Massachusetts. There were 68 responses, of which 48 met inclusion criteria for this study. Several gaps in knowledge related to common medical problems in people with DD were identified. In addition, some responses suggested negative attitudes toward the health promotion of people with DD. The data from this study suggests some nurse practitioners do not have adequate knowledge of health issues specific to people with DD, and this knowledge gap could play a role in healthcare disparity for people with DD. Attitudes and stereotypes could also be factors that influence the decisions of nurse practitioners who plan health promotion activities for their patients with DD.



Throughout history, persons with various intellectual impairments have been regarded and treated with fear, loathing, and cruelty. Even in modern times, people with developmental disabilities (DD) are sometimes treated with prejudice and a lack of understanding. This may be part of the cause of the health promotion disparity that exists today for people with DD. There also seems to be inadequate knowledge among healthcare providers related to the special health promotion needs of people with DD. Healthcare providers sometimes have preconceived ideas about the behavior of people with developmental disabilities that may interfere with the assessment, intervention, and treatment process. The purpose of this study was to describe nurse practitioner knowledge and attitudes of DD health screening and health promotion.


Review of Existing Literature

There have been some studies aimed at understanding possible causes of healthcare disparity for people with DD. A 2005 UCLA study found that only 32% of 167 adults with DD received age-appropriate health screenings for cholesterol, blood pressure, hearing, and vision1. McConkey, Moore, and Marshall (2002) found that 54% of the patients from their study were lacking a variety of routine health services, including wellness visits to check blood pressure and preventative diagnostic blood work, weight checks, and eye examinations2. These examples of healthcare disparity represent a serious problem for people with DD.

Finlayson et al (2004) studied barriers to healthcare for people with developmental disabilities with an emphasis on nurse practitioner knowledge3. The study was conducted at the University of Glasgow (Scotland) and consisted of a survey of 201 advanced practice nurses. The researchers reported that 57% of the respondents had not received any kind of DD-specific training. When asked questions pertaining to DD knowledge, only 24% were aware that autism was more common in this population. Fewer than 20% were aware that gastrointestinal disorders, cerumen impaction, obesity, osteoporosis, and cataracts were more common in the DD population than in the general population. Melville et al (2005) examined the knowledge, attitudes, and training needs of advanced practice nurses via a survey consisting of questions about medical problems common to people with developmental disabilities, such as obesity, epilepsy, heart disease, depression, dementia, hypothyroidism, and cataracts4. A high percentage of the respondents were not previously aware of the increased risk in people with DD to whom they were providing services.

Part of the problem in terms of knowledge could be lack of education related to understanding the special needs of people with DD. Melville (2005) found that only 16 out of 201 (8%) APNs reported having any training in providing care for this population. Similar findings from the United States were reported from the 2002 Surgeon General’s Conference on Health Disparities and Mental Retardation5. The report from the conference identified a gap in the education of medical professionals in the care of people with DD and recommended “training into the basic and specialized education of all health care providers…in serving people with mental retardation” (National Institute of Health, 2002).

In addition to lack of knowledge, healthcare provider attitudes towards people with DD may be a barrier to proper health maintenance activities. An overriding lack of understanding and negative attitudes toward caring for people with DD can also lead to substandard health and wellness screening. Theirry (2000) suggests that healthcare provider attitudes may be the most difficult barriers to overcome6. In terms of routine health screening, they may have the misconception that women with DD do not need regular gynecological care. Despite their disabilities, women of this population are at risk for breast and cervical cancer, yet physical and attitudinal barriers continue to contribute to their not getting screened. Powrie (2003) described the conflicting views about the provision of health promotion and health screening for people with learning disabilities7. One respondent commented it was unclear whether or not a Pap smear was appropriate because the patient may not understand the procedure and feel like she was being violated. In the discussion of communication barriers, Powrie (2003) stated that women with learning disabilities are less likely to have a cervical smear test than their counterparts because of the assumption that they are not sexually active.

To improve health promotion for people with DD, the Massachusetts Department of Mental Retardation (DMR) published a manual in conjunction with its Health Promotion and Coordination Initiative8. The manual, which includes guidelines of recommended health screenings specifically for people with DD, was sent to over 7,000 physicians. The manual is also available online, but the extent to which the guidelines are recognized, accessed, and utilized remains unclear.



Survey Instrument

The DD Health Promotion Knowledge and Attitudes Survey was developed because no measure of nurse practitioner knowledge and attitudes of DD health promotion was found. The survey was created using a process of literature review and expert review. Twenty questions were developed for the purpose of describing nurse practitioners’ knowledge and attitudes toward developmental disabilities health promotion. Questions related to respondents’ knowledge of developmental disabilities health screening were based on recommendations from the DMR Health Promotion Initiative Manual (2003) and included items such as pelvic exams, mammograms, colorectal screening, mental health screening, hypertension, osteoporosis, and thyroid screening. Additional questions related to respondents’ perceived knowledge and quality of developmental disabilities education were drawn from reviewed studies related to knowledge. Questions regarding attitudes toward developmental disabilities health screening were drawn from studies related to attitudes, healthcare disparity, and from the DMR Health Promotion Initiative manual (DMR, 2003; Powrie, 2003; Melville, 2005). The survey was then reviewed by Regis College faculty prior to examination by a field expert. Sharon Oxx, RN, MSN, Director of Health Services for DMR, reviewed the questionnaire for content validity prior to pilot testing, and determined it was a comprehensive and valid instrument for this study (Sharon Oxx, personal communication, April 20, 2006).


Data Collection and Sample

Data were collected for a one-month period between July and August 2006. A random sample of 200 nurse practitioners from a variety of practice settings was obtained from the Massachusetts Board of Registered Nursing (BORN) database. Of the 68 responses, 20 were excluded from the study because they either had immediate family members with developmental disabilities or stated that more than 20% of their practice included patients with developmental disabilities. The final number of respondents used for this study was 48. Table 1 demonstrates the sample demographics.

Table 1. Sample Characteristics (n=48)
African American12
Employment Status
Full time2654
Part time1736
Not working24
Practice Setting
Primary care adults1225
Primary care pediatrics511
Acute/emergency care48
In-patient care48
Mental health48
Percentage of DD clients in practice


Survey packets including letters of introduction, demographic surveys, and knowledge and attitudes surveys were mailed to potential participants. The letter included an explanation of the purpose of the study, an assurance to potential participants that participation was completely voluntary and that by returning the survey they were giving their consent for participation in the study. Participants were informed that there were no known risks associated with this study, and they were assured that their personal identities would be protected and that their contact information would not be used for any other purpose but to conduct this study. Finally, findings would be presented in a way that would make it impossible to correlate data with any particular person or group within the sample. Respondents were informed that by returning the survey, they were giving their consent for participation in this study. The packet also included a self-addressed stamped envelope and instructions for completing the survey and returning it to the investigator.


Data Analyses

Completed questionnaires returned were examined for completeness before being included in this study. Data were entered into SPSS, Student Version 14 for Windows. The data were summarized with descriptive statistics including frequency distributions, measures of central tendency, and dispersion. These statistics were examined to determine the presence of systematic missing data, outliers, and marked skewness. Four of the survey items had at least three missing responses, but none of the questions had more than four missing responses and, therefore, the investigator decided to include them in the final analysis.




Health Screening Knowledge

Items related to knowledge were based on the DMR Health Promotion Initiative Manual (2003) recommendations for health screenings. All respondents correctly answered questions about the need for annual hypertension and colorectal cancer screening. A majority of the respondents answered questions about cervical cancer screening (89.6% n=43) and breast cancer screening (97% n=47) correctly. Roughly half (56%) of the respondents correctly answered the question related to mental health screening. The question most frequently answered incorrectly (64.6%) was related to early osteoporosis screening. Finally, in response to the question of whether or not the participants had either read or knew about the recommended health screening guidelines, 76% had not read or were not aware of the DMR Health Promotion Manual. Table 2 summarizes responses to knowledge questions.

Table 2. Health Screening Knowledge Questions (n=48)
Annual hypertension screening
Colorectal cancer screening every 5 years after age 50
Mammogram every 1-2 years after age 40
Pap smear every 1-3 years
Thyroid screening in Down syndrome
Routine mental health screening
Early osteoporosis screening


Perceptions of DD Training Received

In addition to specific recommended health screenings, the questionnaire included items to examine nurse practitioner perceptions about the developmental disabilities training they received prior to entering practice. When asked whether they felt their formal education adequately prepared them to meet the special needs of the developmentally disabled population, 91.7% responded that it was not adequate. Participants were also asked whether they seek outside sources of information, such as textbooks, experts or the Internet, when providing services to people with developmental disabilities. More than half (63.6%) did not look to outside sources of information for meeting the special needs of people with developmental disabilities. However, when asked whether they would attend developmental disabilities health promotion workshops if they were available in their areas, 70.8% (n=34) of respondents agreed that they would.


NP Attitudes about Health Promotion

The remainder of the survey items were dedicated to exploring and describing nurse practitioner attitudes toward developmental disabilities health screening and health promotion. When respondents were asked whether they agreed that people with developmental disabilities receive equal treatment in terms of healthcare promotion compared to the general population, 47.9% (n=23) agreed they do. Participants were asked about their feelings regarding the provision of gynecological care and sexual education for people with developmental disabilities. In response to the statement that the risk of sexual abuse accusation is higher when cervical examinations are performed on women with developmental disabilities, 29.2% felt that the risk is higher. Four respondents left this item blank. When asked whether it is important to discuss sexual health with developmentally disabled patients, all respondents agreed that it is important.


NP Attitudes about Provision of Care

Finally, three questionnaire items were dedicated to the overall picture of nurse practitioner attitudes toward the provision of care for people with developmental disabilities. In response to the statement, “I am comfortable arranging and/or performing health promotion activities for my developmentally disabled patients,” 68.7% (n=33) either strongly agreed or agreed. When asked whether they enjoy treating people with developmental disabilities as much as any other patients, 22.9% (n=11) stated they do not. Three respondents did not answer this question. When asked whether they wished they could transfer some or all of their patients with developmental disabilities to other providers, 12.5% (n=6) stated they would. Four participants did not respond to this statement.

Analysis with bivariate correlations revealed that 60% (n=30) of the nurse practitioners with less than 15 years experience agreed that there is equality in healthcare. However, only 33% of nurse practitioners with more than 15 years experience (n=18) agreed that there is equality in healthcare for people with developmental disabilities. Overall, roughly half of the respondents (47.9%, n=23) agreed that people with developmental disabilities receive equal healthcare services.



Developmental disabilities nursing is a specialty in nursing practice, and people living within this spectrum of disorders have special needs. The results of this study support the concept that there are knowledge gaps in terms of the health screening needs of people with DD. The DMR recommendations for hypertension, colorectal cancer screening, and cervical cancer screening are the same in the developmental disabilities population as they are in the general population. Not surprisingly, the nurse practitioners surveyed scored nearly perfectly when asked about the recommended time frames for these health promotion activities that they would provide for all patient populations. However, thyroid dysfunction, psychiatric illnesses and osteoporosis are more common to persons with developmental disabilities and require a different schedule for screening. When questioned about these issues in terms of health screening or health promotion the results varied. For example, 24.4% of the respondents were not aware that thyroid screenings were an important part of health promotion for people with Down syndrome. In addition to thyroid screening, findings indicate that there is a knowledge gap within the sample related to mental health issues for people with developmental disabilities.

The majority (91.7%) of this sample stated that due to insufficient training, they did not feel adequately prepared to meet the health promotion needs of people with DD. Despite the lack of educational preparation in meeting the health promotion needs of this population, 63% of this sample stated they do not look for outside sources of information (texts, communication with experts, Internet, etc). Curiously, while the majority of this sample stated they do not seek outside assistance when providing services for people with developmental disabilities, 70.8% (n=34) stated they would attend health promotion workshops specific to this population if they were available in their areas. This could represent a desire to gain more insight into the care of patients with developmental disabilities but a lack of understanding of what resources are available to them.

In addition to potential gaps in knowledge and education, it may be suggested that attitudes are a factor in developmental disabilities health screening. Most of the respondents (83.3%, n=40) agreed that meeting the health promotion needs of people with DD is very challenging. In light of this information, combined with the collective statement that their developmental disabilities education was not adequate, one might expect to find nurse practitioners looking for outside information more often. To address the overall feeling of the sample in relationship to providing health promotion services to people with developmental disabilities, participants were asked whether they wished they could transfer some or all their developmentally disabled patients to other providers. A small number (12.5%, n=6) stated they would, in fact, transfer some or all of their developmentally disabled patients to other providers. Four respondents did not answer the question. This data is significant because it further illustrates the healthcare disparity that exists for the developmentally disabled population. Finally, in terms of attitudes, respondents were asked whether or not they felt people with developmental disabilities received equal treatment in terms of health promotion from their providers. Nearly half (47.9, n=23) felt people with DD do receive equal treatment. This could represent a lack of understanding about the current situation faced by people with DD in terms of their medical care. However, it is also important to note that the majority of the nurses with more than 15 years experience did not agree that there is equality in healthcare.


Implications for Nursing

The data from this study suggests that part of the reason for the current disparity in health promotion services for people with DD could be a lack of understanding regarding what health screenings are necessary and recommended for people with DD. Massachusetts DMR issued a manual for use by all healthcare providers to guide the process of health screening, but this data has shown that the majority of this sample either never heard of the manual or never read it. The manual was issued to medical doctors, but not to nurse practitioners. Therefore, an important first step could be to inform nurse practitioners that the manual does exist, that it should be available through their collaborating physicians, or that it could be obtained through the Internet via the DMR website. In addition, nurse practitioners should be encouraged to share this information with their supervising physicians, who also may not have read the manual.

Nurses from this study, as well as doctors and nurses from several other studies, have stated they received little or no education related to caring for the special needs of the developmentally disabled population. The combination of data gaps from this and other studies related to developmental disabilities health screening clearly shows a need for better education in caring for this population in nursing schools. While changes in curricula specific to meeting the health promotion need of this population at the college level could improve outcomes, attendance at post-graduate educational programs could also be beneficial. Many respondents stated a desire to attend these types of programs. Perhaps this data, combined with other similar data, might elicit an increase in the number of programs or workshops designed to enhance knowledge of developmental disabilities health screening and health promotion.

There have been limited studies related to understanding the knowledge and attitudes of nurse practitioners toward developmental disabilities health screening and health promotion. Due to the small sample size and limited geographical area, the data in this study cannot necessarily be considered generalizable to the larger population. However, there is sufficient data to promote questions related to the quality of education specific to the needs of people with developmental disabilities, the knowledge base of people providing services, and the attitudes that may be influencing healthcare disparity for this population. For example, it would be interesting to repeat this study with another group, such as medical doctors or physician’s assistants, for comparison. Also, a repeat of this study in another geographical location that does not have a published manual for developmental disabilities health screening could yield valuable data that could help support the development of standardized recommendations for health screening.


Limitations and Conclusion

The data from this study is exclusively self-reported information. Knowledge and attitudes are both attributes that many respondents may not accurately self-report, particularly if in their view their answer to certain questions may reflect negatively upon them. It is possible that respondents may want to present themselves as having an unbiased attitude and sufficient knowledge, even in an anonymous questionnaire. In addition, this study was limited geographically to the state of Massachusetts. Other areas of the country may have different levels of education, experience, and attitudes related to people with developmental disabilities. Therefore, the findings should be reviewed in the context of Massachusetts’s nurse practitioners.

The instrument used in this study was designed specifically for this purpose and has never been empirically tested using statistical methods. Future studies utilizing this instrument could demonstrate testable reliability, but data from this study must be evaluated with the question of reliability in mind. Finally, this study was created for the purpose of utilization as a graduate thesis project, and although carefully reviewed by experienced research faculty, was conducted by a novice researcher.

This study revealed a definite need to evaluate nursing schools’ curricula for content specific to the care of people with developmental disabilities. It identified gaps in knowledge of recommended health screenings for this population as well. People with developmental disabilities do not always have their health promotion needs met, and a lack of knowledge of what those needs are could be part of the problem. The DMR Health Promotion Manual was designed to be the standard for developmental disabilities health promotion, but most of the nurse practitioners from this study never read it. The data also revealed that some nurse practitioners may have attitudinal barriers that prevent recommended health screenings from occurring at the appropriate time intervals. However, it was also shown that many nurse practitioners want to provide better services for this population and would be amenable to attending workshops aimed at improving developmental disabilities health promotion knowledge.



  1. UCLA. Aging issues of adults with developmental disabilities [study summary on the Internet]. Medical News Today: MediLexicon International, Ltd. 2005 May 24; [cited 2006 February 20] Available from: www.medicalnewstoday.com/medicalnews.php?newsid=24986.
  2. McConkey R, Moore G, Marshall D. Changes in attitudes of general practitioners to the health screening of patients with learning disabilities. Journal of Learning Disabilities. 2002;6(4):373-384.
  3. Finlayson J, Cooper S, Morrison J, Allan L, Melville C, Burns E, Martin G. Robinson N. Learning disabilities: Enhancing care for adults. Practice Nurse. 2004;28(10):21-27; [cited 2006 Aug 22]. Available from CINAHL [closed database on the Internet]: www.cinahl.com.
  4. Melville C, Finlayson S, Cooper L, Allan N, Robinson E, Burns G, Martin G, Morrison J. Enhancing primary health care services for adults with Intellectual disabilities.  Journal of Intellectual Disability Research. 2005;49:190-198.
  5. Surgeon General’s Conference on Health Disparities and Mental Retardation, U.S. Department of Health & Human Services; 2001 Dec 5-6; Washington, DC [cited 2006 Mar 10]. Available from: www.surgeongeneral.gov/library/disabilities/calltoaction/index.html
  6. Theirry J. Increasing breast and cervical cancer screening among women with disabilities. Journal of Women’s Health.2000;9:9-12; [cited 2006 Feb 8]. Available from CINAHL [closed database on the Internet]: www.cinahl.com 
  7. Powrie E. Primary health care provision for adults with a learning disability.  Journal of Advanced Nursing. 2003;42(4):413-423; [cited. 2006 Feb 8]. Available from CINAHL [closed database on the Internet]: www.cinahl.com
  8. Department of Mental Retardation. (2003). Health promotion and coordination initiative training and resource manual.Boston: DMR.


John Boisseau, MSN, APRN, BC, CDDN has been a registered nurse since 1997 after receiving his Associate Degree in Nursing from the Community College of Rhode Island. He earned a Bachelor of Science in Nursing from the University of Phoenix online program in 2004, and attained a Master of Science degree in Nursing from Regis College in 2007 with certification as an adult psychiatric and mental health nurse practitioner. John has been a certified developmental disabilities nurse (CDDN) since 2000 and has specialized in the care of people with intellectual and developmental disabilities since 1998. He is currently in Regis College’s Doctor of Nursing Practice program and is scheduled to graduate as a DNP in May 2009.

Roseann Barrett, PhD, RN has been a registered nurse for over 30 years after first gaining a diploma in nursing from the Beth Israel School of Nursing in New York in 1975. She earned a Bachelor of Science in Nursing degree from Gwynedd-Mercy College in 1990, a Master of Science in Nursing from Villanova University in 1994, and a PhD in Nursing from Boston College in 2001. Dr. Barrett has been published numerous times and has been involved in many research projects including a 1990 research study that involved studying nurses’ attitudes about personal health promotion behaviors. Dr. Barrett has held several positions related to nursing research and education and continues in her current position as Director of Nursing Research.



John Boisseau, MSN, APRN, BC, CDDN
E-mail: [email protected]

Gene-Environment Influences on Fetal Alcohol Syndrome: State of the Science

Gloria Giarratano, PhD, APRN, CNS and Angelique White Williams, DNS, APRN, CNS, CCHC



Alcohol ingestion during pregnancy continues to be a major medical, social, and public health problem. This article will review the state of the science and current research concerning the adverse effects of alcohol on fetal and child development. Genetic-based research will be presented as a relatively new area of knowledge that may lend insight into determining how risk of injury and susceptibility to more severe consequences of fetal alcohol syndrome can be influenced by genetic determinants, such as maternal alcohol metabolism. The health care professional’s role in prevention, providing early diagnosis, physical and mental health assessments, and promoting family advocacy will be overviewed.


In 2005, the U.S. Surgeon General’s Advisory on Alcohol Use in Pregnancy urged women who were pregnant or who may become pregnant to abstain from using all alcohol1, 2 . No amount of alcohol is considered safe for consumption during pregnancy. This policy was founded on a body of science that confirmed a wide range of adverse effects of prenatal alcohol exposure on the developing fetus. The array of fetal complications, including structural and facial anomalies, cognitive deficits, birth defects, and neuro-developmental disabilities, were termed fetal alcohol spectrum disorders (FASD). Although the characteristics and severity of the conditions may vary, each disorder adversely impacts the infant, child, and adolescent and has a lifelong effect on the health and well being of the affected individual. Fetal alcohol syndrome (FAS) is the diagnostic term used to identify children at the most severe end of the spectrum who have characteristic facial anomalies, growth deficits, and central nervous system problems

Prenatal alcohol exposure is the most preventable cause of birth defects, developmental disabilities, and mental retardation in the U.S.3. Yet the number of pregnancies potentially affected by alcohol exposure continues to be alarmingly high. A national survey conducted by the Centers for Disease Control and Prevention (CDC) in 2002, found that 10.1% of women surveyed reported alcohol consumption at some time during their past pregnancy4. Of these, 1.9% reported binge drinking during a past pregnancy (defined as 5 or more drinks on 1 occasion), and another 1.9% reported frequent use (defined as 7 or more drinks in a week) while pregnant. In the U.S. and western countries, the incidence of FAS is 1 to 2 times per 1000 live births. Yet, when the incidence of FAS is combined with all other alcohol-related conditions, the overall effects of prenatal alcohol exposure is estimated to affect 10 out of 1000 live births5.


State of the Science

Since the characterization of FAS more than 30 years ago, there has been a plethora of research studies aimed toward increasing our understanding of the toxic effects of alcohol on the developing fetus. Ethanol-induced toxic effects have proven complex to study due to the intricate system of cellular changes normally occurring in early development; therefore, the mechanisms of how alcohol alters development are not fully understood. It has been well established, however, that there is no one cellular mechanism that causes all the deficits associated with FAS. Progress with understanding some of these potential mechanisms and the genetic links will be highlighted below. Recent discoveries of the genetic influences on predisposition to FASD, and the severity of complications leading to FAS, will impact how we screen at-risk women and newborns and how we target prevention efforts.


Teratogenic Effects of Alcohol

Laboratory research using either model animals, such as the mouse or rat, or using in vitro approaches in which cell lines or tissue are grown in tissue culture, has contributed to current understanding of the mechanism for in utero alcohol damage6. The findings from animal studies cannot be transferred to humans with absolute certainty, since there are species-specific factors that influence alcohol’s effects. Yet both approaches allow researchers to manipulate and mimic the conditions of alcohol consumption during pregnancy by exposing the animal, its offspring, or specific cells to alcohol.
This body of research has indicated there are multiple mechanisms responsible for the broad variations of anatomical and cognitive characteristics seen in FASD and the FAS phenotype7, 9. Alcohol may act directly on fetal tissue as a teratogen, arresting or altering cell development, or it may act indirectly as a result of alcohol metabolism. Acetaldehyde is one such toxic by-product of alcohol metabolism that can accumulate in the fetal brain. Alcohol also has been shown to interfere with nutritional and hormonal factors that are necessary for normal embryonic development.

The most serious injury to the developing brain and central nervous system is most likely attributed to cell death. Cell death results either through necrosis of neurons damaged by metabolic injury or by a process of cell suicide or apoptosis7, 9. One mechanism by which alcohol is thought to accelerate apoptosis (and necrosis) is by the oxidative stress of alcohol metabolism in which a large number of free radicals are expressed. Free radicals are unstable molecules formed during metabolism of alcohol that cause damage to cells and can initiate the release of apoptosis-inducing factors. Normally, free radicals are eliminated by antioxidants in the cells, but alcohol itself reduces antioxidants. This contributes further to alcohol-induced cell damage and death. This oxidative stress is also thought to damage mitochondria—the cellular organelles that generate the cell’s energy.

Studies have also found that alcohol damages the fetal brain by interfering with the growth factors and neurotransmitters that regulate cell proliferation and brain development7. Normal neuron development requires neurons to develop and migrate to the outer layers of the cerebral cortex. Alcohol exposure at critical times can alter normal migration, and neural cells end up in abnormal positions, thus altering the connections among neurons. The growth and differentiation of serotonin-releasing neurons (i.e., serotonergic system – 5HT) has been studied with interest, since this system plays an important role in human mood disorders. Research seems to indicate that environmental influences in early development may alter neuron determination in the serotonergic system. Alteration in the function of the serotonergic system is associated with increased individual susceptibility to mental health disorders and can affect how well the individual respond to pharmaceutical agents10. Fetal alcohol exposure has reduced 5HT neurons by 30% in the mouse11. If similar effects occur in humans, it is believed the result would be the delayed development of serotonergic neurons needed for normal interaction between serotonin and target sites during normal brain development. The mechanisms and long-term consequences of this delay need further study.

As a result of these teratogenic insults, children exposed to alcohol prenatally often suffer from structural changes in the brain, as well as cognitive deficits and behavioral problems. Magnetic resonance imaging (MRI) studies have shown distinct changes in the brains of individuals exposed to alcohol prenatally12. The structures potentially affected by fetal alcohol exposure are shown in Figure 1. Overall head size is decreased in children with FAS, with structural changes observed in several key brain areas, such as the cerebellum, hippocampus, basal ganglia, and corpus callosum13 . Through MRI studies, prominent disproportionate reductions have been found in areas such as the parietal lobe and corpus callosum, suggesting that certain areas of the brain may be especially vulnerable to prenatal alcohol exposure. These specific brain areas are normally associated with intellectual functioning, motor abilities, memory, and executive functioning. “Executive functioning” refers to higher-level cognitive functions involved in planning and guiding behavior to achieve goals, problem solve, think abstractly and be flexible14.

In addition to affecting brain development, there are mechanisms that can also alter tissue growth and the developing nerve-muscle system15. Prenatal alcohol exposure in rats reduced muscle fiber in number and size by delaying the maturation process of the neuromuscular system. Delays in maturation may account for the reduction in birth weight, and the continued growth restriction and muscle weakness seen in children with FAS. Likewise, alcohol exposure during critical development of the cardiac neural crest predisposes the developing fetus to a host of heart defects, such as atrial and ventricular septal defects, tetralogy of Fallot, and pulmonary artery stenos is16.


Variations That Affect FAS Phenotype: Environment and Genes


Maternal drinking patterns

FASD and FAS are not genetically inherited conditions. A child must be exposed to prenatal alcohol in order to be affected. However, there are believed to be variations in the susceptibility and severity of the conditions based on environment-gene interactions. The environmental impact of alcohol on the fetus may vary due to the timing and dosage of alcohol; the genetic make-up of the mother who consumes and metabolizes the alcohol; and the fetus, which responds to the toxic effects of alcohol and eventually metabolizes it in later development. Maternal drinking patterns and maternal metabolism are the two most important variables that affect the levels of blood alcohol concentration (BAC) and thus influence the severity of fetal brain injury17, 18.

Research has demonstrated that dosage and timing of exposure may impact the severity of the disorders19 . For example, the classic head and face anomalies have been correlated to exposure during the embryonic stage (first eight weeks). In animal research studies, the BAC is used as a precise measure of alcohol present in the bloodstream after alcohol intake. Animal studies have correlated BAC and effects on brain injury in developing rats and mice7, 20. In studies such as these, the factors known to affect BAS (including time between eating and drinking, and the concentration of the alcohol consumed) were kept constant. Numerous studies conclude that brain growth is impaired more by binge-like patterns of intake than by continuous daily exposure21, 22. One early study found that a lower daily dose given in a binge pattern (4.5g/kg/day over 4 hours) was more harmful to the animal than a higher daily dose consumed over eight hours (6.6 g/kg/day)23. Based on these animal studies, it is assumed that binge drinking during this sensitive period of pregnancy (first 4-6 weeks) results in the most severe physical anomalies. However, the internal structural brain changes and the resulting cognitive injury can occur with alcohol exposure throughout the gestational period12.


Genetic influences on alcohol intake and metabolism

Despite these findings, not all incidences of prenatal exposure to alcohol will result in FAS. The possibility that genetic risk factors play a role in the susceptibility to adverse effects was first considered when animal researchers noted that different strains of mice and chick research models were affected differently by alcohol exposure during gestation. Certain strains consistently experienced more severe alcohol-related disorders than others, even when the amount of alcohol ingested was kept constant20, 24. This suggests that genetic differences in metabolism and molecular mechanisms of alcohol toxicity control teratogenic effects. At the same time, genetic risks that predispose the woman to alcohol addiction and conditioning may indirectly affect her drinking pattern. While intake is generally considered an environmental issue alone, there is now evidence that genetic variations may affect the amount of alcohol desired and the risk of dependency and addiction25.

The genetic mechanisms that control alcohol metabolism, and thus blood alcohol concentrations (BAC), are of utmost interest in studying the effects of prenatal exposure, because BAC levels of the mother during critical periods of gestational development have the most direct effect on the degree and severity of fetal injury. Obviously, the more rapid and efficient metabolism of alcohol and the metabolite by-products, such as acetaldehyde and oxidative radicals, the less chance there is for adverse effects on fetal development. Genetic-based research provides an opportunity to further study how alcohol metabolism may differ among individuals because of genetic variations in the enzymes necessary to eliminate alcohol from the body.

A major pathway for alcohol elimination is oxidation of acetaldehyde to acetate. The primary enzyme involved in catalyzing alcohol to acetaldehyde and acetate is alcohol dehydrogenase (ADH). Genetic research has revealed differing genetic codes for ADH enzymes involved in the hepatic metabolism of alcohol26, 27. Single nucleotide differences, known as polymorphisms, alter the enzyme catalytic activity and are hypothesized to alter the metabolism of alcohol in the liver among individuals. Although other enzymes, such as cytochrome P450 2E1 (CYP2E1), are involved in the process, ninety percent of alcohol elimination occurs through ADH oxidation. There are several classes of human alcohol dehydrogenase, but the one of most interest is from the Class 1 family, ADH1B, where three known polymorphisms are considered functionally relevant. These three variations of ADH1B are listed in Table 1, and the possible differences in prenatal alcohol exposure outcomes are outlined based on current research findings26, 30.

There are obvious challenges when comparing one human study on genetic influences to another, since many are retrospective with differing levels of alcohol consumption based on self-report. In addition, case-control studies are limited to making only statistical associations and cannot prove the gene of study was, in fact, the definitive reason for differences found. However, a number of studies have concluded that in cases where the woman who consumed alcohol during a pregnancy had either the allele variant ADH1B*2 or ADH1B*3, the developing fetus was afforded some degree of protection from adverse clinical injury; those with ADH1B*1 had more deficits28, 29, 31. The mechanisms responsible are not totally clear and more study is warranted. How the environmental issues, such as pattern of alcohol consumption, impacts the protective benefits is also unknown and more difficult to study. Other genetic factors, such as the role of placental enzymes and maternal-fetal interactions, also need consideration. Such factors may be the key to predicting which newborns will be at risk for the most adverse outcomes. Although promising, more population-based research is needed before polymorphisms can be used as a biomarker to identify women or newborns at higher risk of FAS. Genetic makeup alone does not account for enough of the variance in outcome. Currently, screening and intervention to prevent alcohol use in women of childbearing age remains the best strategy to prevent children born with FAS. Prenatal screening for alcohol use and timely clinical newborn and child assessments continue to be indicated to reduce exposure and target alcohol-related problems in children after birth so that early intervention can begin.


Assessment Findings in FAS

Assessment criteria for fetal alcohol effects include prenatal and postnatal growth retardation, craniofacial abnormalities, central nervous system abnormalities, and major organ malformation, such as congenital heart defects. However, the CDC recently recognized specific assessment criteria for the identification of FAS. Assessment data that has been documented and reviewed during the development of the child is critical. These include documentation of three facial abnormalities (smooth philtrum, thin vermillion border, small palpbral fissures), documentation of growth deficits, and documentation of central nervous system abnormalities (structural, neurological or functional, or combination)3, 32. The presence of all the above-mentioned findings concludes a diagnosis of FAS. Figure 2 demonstrates classic cranial-facial features of FAS.

At birth, newborns will exhibit basic head and facial deformities that include long thin upper lips, small eyes, flattened maxilla, and small heads. If these deformities are not obvious at birth, the syndrome may be identified later when the infant displays poor sucking, irritability, excess growth of body hair (hirsutism), and failure to thrive33. Growth retardation with weight, length, or head circumference below the 10th percentile are other common assessment findings in FAS32.

With the understanding that fetal alcohol effects create changes in presentation of criteria during development, nursing assessment and documentation are significant. A crucial finding in the history of an infant with FAS is noted in CNS abnormalities. More specifically, functional abnormalities displayed in delayed motor abilities, hyperactivity behavior, and developmental deficits are obvious over time. As the child reaches preschool years, language development is delayed; motor skills are uncoordinated; and delayed growth and development milestones are displayed34. School-age findings are identified in decreased cognitive functioning, school failure, and social problems. Behavioral teratogenesis continues to be demonstrated in adolescence and adulthood in the form of secondary disabilities, including mental health problems, delinquency, problems with the law, difficulty in independent living, and alcohol and drug abuse35. The quality of life for adults suffering from FAS becomes a community issue and can effect the quality of life experienced by a community36.

While structural findings are apparent in most cases of FAS, cognitive and functional deficits are various and individualized on a case-by-case basis. Since infants with fetal alcohol effects are easily over-stimulated, resulting in inconsolable crying, parents may have difficulty bonding and providing appropriate care37. These infants grow to be children who may have difficulty relating with others and handling stressful situation. Despairing temper tantrums are seen in children with FAS, contributing to parental frustration and insecurities32. There is further evidence that fetal alcohol effects contribute to memory deficits, resulting difficulties to retain or recall information32. This causes a significant concern during school-age years of children suffering from FAS. As children suffering from the effects of FAS enter adolescence, they are faced with decreased coping strategies, making them unable to complete studies in school and establish identity among peers. As adults, children with FAS may have difficulty in skill acquisition and maintaining steady employment. These things foster antisocial behavior, a decrease in self-esteem, and powerlessness38.

Thorough nursing assessment becomes essential in the health and safety of infants born with FAS. Nursing intervention in clinics, childcare facilities, and schools contribute to early identification and appropriate referrals. Nurses with specialized skills in caring for children with special health care needs and knowledge in pathogeneses are warranted. Children with FAS and their families need nurses who can navigate various health care systems and use related evidenced-based nursing interventions to enhance the quality of life for everyone involved.

Health teaching, counseling, and consultation are interventions nurses commonly use to promote health within these families39, 40. Teaching and counseling foci include: how to maintain a safe environment; behavior management strategies; growth and development education; promoting parent-infant interactions; and building on the child’s strengths. Child control recommendations shown to be effective include: developing routines; preparing the child for anticipated changes in his or her routine; calming techniques; communication strategies; and anger management. Linking the family with FAS advocacy groups is also important, since such groups offer ongoing support, education, and national referrals.



There is a need to understand how the effects of alcohol differ due to timing of exposure in the gestation period, dosage (BAC), and individual genetic make-up. The knowledge gained from animal model studies helps clinicians understand the clinical manifestation of the disorders and has led to more refined assessment and intervention protocols. This body of science has become a part of current public health models that emphasize prevention education and intervention for women at childbearing age. In the past ten years, genetic research has emerged to explain individual risks and offers the potential to further inform practices. In the future, genetic screening may be available to identify women most susceptible to the adverse risks of prenatal alcohol exposure – with the goal of targeting this high-risk population for prevention strategies before conception.


Table 1. Alcohol Dehydrogenase (ALDH) Enzyme Polymorphisms
For ADH using Human Genome Org. nomenclature
Speculated role in alcohol metabolism and risk for
Fetal alcohol spectrum disorders
  • Associated with a slower rate of ethanol oxidation as compared with the two alternate alleles (see below). Predominately seen in European and American populations.
  • Associated with an increased rate of ethanol oxidation.
  • Significantly more common in unaffected individuals exposed to prenatal alcohol, suggesting a protective role within either the mother or the fetus against FAS.
  • Associated with an increased rate of ethanol oxidation.
  • More frequently found in African Americans and believed to enable more efficient metabolism of alcohol and thus demonstrates a protective role.
  • Maternal allele indicated protective benefits in alcohol-exposed infants: improved birth weight and length; improved scores on the Bayley Mental Development Index (MDI).


Table 2. Fetal Alcohol Syndrome Web Site Resources



  1. United States Department of Health and Human Services. U.S. Surgeon General Releases Advisory on Alcohol Use in Pregnancy; 2005.
  2. Ryan D, Bonnett DM, Gass CB. “Sobering Thoughts: Town Hall meetings on fetal alcohol spectrum Disorders.” American Journal of Public Health. 2006;96(12):2098-101.
  3. Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities, U.S. Department of Health and Human Services, National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect. Atlanta, GA [updated 2007 Jan 12]. “Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis”; 2004 [updated 2005 May; cited 2006 Nov 23]. www.cdc.gov/ncbddd/fas/documents/FAS_guidelines_accessible.pdf.
  4. Centers for Disease Control and Prevention. Alcohol consumption among women who are pregnant or might become pregnant—United States. MMWR morbidity mortality weekly report. CDC; 2002:1178-81.
  5. May P, Gossage J. “Estimating the prevalence of fetal alcohol syndrome: a summary.” Alcohol Research & Health.2001;25:159-67.
  6. Cudd T. “Animal model systems for the study of alcohol teratology.” Experimental Biology and Medicine. 2005;230:389-93.
  7. Goodlett C, Horn K. “Mechanisms of alcohol induced damage to the nervous system.” Alcohol Research & Health.2001;25(3):175-84.
  8. Mattson S, Schoenfeld A, Riley E. “Teratogenic effects of alcohol on brain and behavior.” Alcohol Research & Health.2001;25(3):185-91.
  9. Siler-Marsigilio K, Madorsky I, Pavia M, Neeley A, Shaw G, Heaton M. “Effects of acute ethanol exposure on regulatory mechanism of Bcl-2-Associated Apoptosis promoter, bad in neonatal rat cerebellum: Differential effects during vulnerable and resistant developmental periods.” Alcohol Clinical and Experimental Research. 2006;30(6):1031-8.
  10. Cordes S. “Molecular genetics of the early development of hindbrain serotonergic neurons.” Clinical Genetics. 2005;68:487-94.
  11. Zhou F, Sari Y, Zhang J, Goodlett C, Li T. “Prenatal alcohol exposure retard the migration and development of serotonin neurons in fetal C57BL mice.” Research Development and Brain Research. 2001;126:147-55.
  12. Spadoni A, McGee C, Fryer S, Riley E. “Neuroimaging and fetal alcohol spectrum disorders.” Neuroscience Biobehaviorial Review. 2007;31(2):239-45.
  13. Kodituwakku P. “Defining the behavioral phenotype in children with fetal alcohol spectrum disorders: a review.” Neuroscience Biobehavioral Review. 2007:31(2):192-201.
  14. Kodituwakku P, Kalberg W, May P. “The effects of prenatal alcohol exposure on executive functioning.” Alcohol Research & Health. 2001;25(3):192-8.
  15. David P, Subramaniam K. “Prenatal alcohol exposure and early postnatal changes in the developing nerve-muscle system.” Birth Defects Research (Part A): Clinical and Molecular Teratology. 2005;73:897-903.
  16. Cavieres M, Smith S. “Genetic and developmental modulation of cardiac deficits in prenatal alcohol exposure.” Alcohol Clinical and Experimental Research. 2000:24(1):102-9.
  17. Maier S, Strittmatter M, Chen W-J, West J. “Changes in blood alcohol levels as function of alcohol concentration and repeated alcohol exposure in adult female rats: Potential risk for factors for alcohol-induced fetal brain injury.” Alcoholism: Clinical & Experimental Research. 1995;19:923-7.
  18. Cudd T, Chen W-J, Parnell S, West J. “Third trimester binge ethanol exposure results in hypercapnea and academia but not hypoxemia in pregnant sheep.” Alcoholism: Clinical & Experimental Research. 2001;25:269-76.
  19. Maier S, West J. “Drinking patterns and alcohol-related birth defects.” Alcohol Research & Health. 2001;25(3):168-74.
  20. Boehm S, Lundahl K, Caldwell J, DM G. “Ethanol teratogenesis in the C57BL/6J, DBA/2J, and A/J inbred mouse strains.” Alcohol. 1997;14:389-95.
  21. Pauli J, Wilce P, Bedi K. “Acute exposure to alcohol during early postnatal life causes a deficit in the total number of cerebellar Purkinje cells in the rat.” Journal of Comparative Neurology. 1995;362(283-292).
  22. Goodlett C, Eilers A. “Purkinje cell loss with a single binge exposure in neonatal rats: A stereological study of temporal windows of vulnerability.” Alcoholism: Clinical & Experimental Research. 1997;21:738-44.
  23. Bonthius D, West J. “Alcohol-induced neuronal loss in developing rate: Increased damage with binge exposure.” Alcoholism: Clinical & Experimental Research. 1990;14:107-18.
  24. Cavieres M, Smith S. “Genetic and developmental modulation of cardiac deficits in prenatal alcohol exposure.” Alcohol Clinical and Experimental Research. 2000;24(1):102-9.
  25. Heath A, Phil D, Nelson E. “Effects of the interaction between genotype and environment.” Alcohol Research & Health.2002;26(3):193-201.
  26. Warren KR, Li, TK. “Genetic Polymorphisms: Impact on the risk of fetal alcohol spectrum disorders.” Birth Defects Research (Part A). 2005;73:195-203.
  27. Gemma S, Vichi S, Testai E. “Metabolic and genetic actors contributing to alcohol induced effects and fetal alcohol syndrome.” Neurosci and Biobehav Rev. 2007:31(2): 221-9.
  28. McCarver D, Thomasson H, Martier S, Sokol R, Li T. “Alcohol dehyrogenase-2*3 allele protects against alcohol-related birth defects among African Americans.” Alcohol Health and Research World. 1997;18:1995-101.
  29. Croxford J, Jacobson S, Carr L. “Protective effects of the ADH2*3 allelle in African American children exposed to alcohol during pregnancy.” Alcohol Clinical and Experimental Research. 2003;27(Suppl):39A.
  30. Wain, H.M, Lush M, Ducluzeau, F, Povey, S. Genew: “The Human Gene Nomenclature Database.” Nucleic Acids Research. 2002; Vol. 30, No. 1 169-171. Genew, HUGO Gene Nomenclature Committee (HGNC) [database on the Internet]; Alcohol dehydrogenases [updated 2007 Apr 28;]. Department of Biology, University College London, Wolfson House, 4 Stephenson Way, London NW1 2HE, UK. www.gene.ucl.ac.uk/cgi-bin/nomenclature/searchgenes.pl
  31. Viljoen D, Carr L, Foroud T, Brooke L, Ramsay M, Li T. “Alcoholism.” Clinical and Experimental Research. 2001;25:1719-22.
  32. Welch-Carre E. “The neurodevelopmental consequences of prenatal alcohol exposure.” Advances in Neonatal Care.2005;5(4):217-29.
  33. Wattendorf D, Muenke M. “Fetal alcohol spectrum disorders.” American Family Physicians. 2005;72(2):279-85.
  34. Sokol RJ, Delaney-Black V, Nordstorm B. “Fetal alcohol spectrum disorder.” JAMA. 2003;290(22):2996-9.
  35. Streissguth AP, Finnegan LP. “Effects of prenatal alcohol and drugs.” Clinical manual of substance abuse. In. St. Louis: Mosby-Year Book; 1996:254-71.
  36. Grant T, Huggins J, Connor P, Streissguth A. “Quality of life and psychosocial profile among young women with fetal alcohol spectrum disorders.” Mental Health Aspects of Developmental Disabilities. 2005;8(2):33-9.
  37. Steinhausen H, Willms J, Metzke CW, Spohr H. “Behavioral phenotype in fetal alcohol syndrome & fetal alcohol effects.” Developmental Medicine & Child Neurology. 2003; 45(3):179-82.
  38. Antai-Otong D. “Women & alcoholism and gender-related medical complications: treatment considerations.” Journal of Addictions Nursing. 2006;17(1):33-42.
  39. Meinyk B, Small L, Caley L, et al. “Evidenced-Based Review of Nursing Interventions to prevent secondary disabilities in fetal alcohol spectrum disorder.” Pediatric Nursing. 2006;32(2):55-62.
  40. Wilton G, Plane M. “The family empowerment network: A service model to address the needs of children and families affected by fetal alcohol spectrum disorders.” Pediatric Nursing. 2006;32(4):299-306.
  41. Mattson SN, et al. “MRI and prenatal alcohol exposure: Images provide insight into FAS.” Alcohol Health & Research World.1994;18(1):49-52.
  42. Warren K, Foudin L. “Alcohol-related birth defects—The past, present, and future.” Alcohol Research & Health.2001;25(3):153-8.


Gloria Giarratano, PhD, APRN, CNS
Associate Professor of Nursing
/ LSU Health Sciences Center
School of Nursing
1900 Gravier St.
New Orleans, LA 70112
Tel: (504)568-4172
E-mail: [email protected]

Angelique White Williams, DNS, APRN, CNS, CCHC
Instructor of Clinical Nursing
Child Care Health Consultant
LSU Health Sciences Center
School of Nursing
1900 Gravier St.
New Orleans, LA 70112
E-mail: [email protected]

A Qualitative Study of Emergency Nurses’ Perceptions and Experience in Caring for Individuals with Intellectual Disabilities in the United States

Kathleen Fisher, PhD, CRNP, Christine Frazer, MSN, CNS, Catherine Hasson, MSN, RN and Fredrick Orkin, MD, MBA, MSc



Emergency nurses’ experience of caring for individuals with intellectual disabilities (ID) is the focus of this study. The emergency department (ED) provides a crucial study site as vulnerable populations, including the uninsured, homeless and those with ID, are likely to be high utilizers of emergency services for acute, psychiatric and primary care needs.1 Nursing knowledge and attitudes regarding this vulnerable population is a topic not well articulated in the nursing literature.


This qualitative, descriptive case study explored the experiences of a purposive sample of 23 emergency nurses. The interviews consisted of mostly open-ended questions that were tape recorded and transcribed verbatim. The transcribed interviews were content analyzed by a panel of three nurse researchers and reviewed by a clinical expert with more than 16 years of ED nursing experience.


Nurses perceived care for the ID patient to be difficult due to communication barriers and a general lack of experience and knowledge in providing care for this population. A lack of comfort and frustration was also expressed related to provision of care.


Nurses in a variety of practice settings need to plan for providing health services for this vulnerable population. The life expectancy for those with ID is increasing, and they likely will have more complex needs as they age. Knowledge of the experiences of ED nurses will assist other nurses to problem solve and advocate for holistic, competent care. An understanding of nurses’ perceptions factors into both the quality of and access to care for this vulnerable population.



Access to quality health services for individuals with intellectual disability (ID) has been a public health concern in the United States since the deinstitutionalization movement of the 1970s. A knowledge gap among health care workers in relation to this vulnerable population, as well as a lack of sensitivity to their many physical and psychosocial needs, exists. The focus of this study is emergency nurses’ experience of caring for individuals with ID. The emergency department (ED) provides a crucial study site as vulnerable populations, including the uninsured, homeless and those with ID, are likely to be high utilizers of emergency services for acute, psychiatric and primary care needs.1 Nursing knowledge and attitudes regarding this population is a topic not well articulated in the nursing literature.



Historically in the United States, mental retardation has been the diagnosis assigned to those with significant limitations in intellectual functioning and adaptive behavior. As of January 2007, the term Intellectual Disability (ID) replaces the former label.2 Three criteria need to be met in order to diagnose an individual with ID. These include: impaired intellectual functioning level (IQ) of 70 or less, onset before the age of 18, and significant limitations in two or more adaptive skill areas, including: communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health and safety.3-4 Adaptive skills are needed to actively engage in community living, and people with ID by definition have difficulty interacting with their environment. They are considered a vulnerable population that places additional demands on the health care system by virtue of their specific needs.5



An estimated 7 to 8 million Americans of all ages, or roughly three percent of the general population, live with ID.6-7 Intellectual disability can affect anyone from any ethnic or economic background. These vulnerable individuals often rely on the judgment of family and non-family, proxy decision makers for access to health care and other services.

Nationwide, the number of ID residents in nursing facilities and public and private institutions has been decreasing steadily, so that in 2000 the proportion of individuals living in group homes increased to 61% compared to 27% in institutional placements.8 An estimated 60% of individuals with ID currently live with family caregivers. Many are now living into middle and old age due to advances in medicine and assistive technologies, and their parents will need to establish formal living arrangements when their ID children live beyond the parents’ capacity to care for them.9-10 Unfortunately, community resources to support those with ID are often lacking or inadequate.10-11 The aging of family caretakers, coupled with the aging of the ID population, portends a growing cohort of individuals with special needs that places additional stress on existing community support services and resources. The increase in age of persons with ID will also result in an expected increase in hospital and ED visits, requiring nurses to increase their level of expertise with this population.

Additionally, the uninsured, homeless and those with ID tend to be high utilizers of emergency services for acute, psychiatric and primary care needs.1 In a study by four ED physicians, it was reported that some emergency physicians were uncomfortable when interacting with individuals with ID, which often carried over to the assessment and management of these patients in the ED.12 Is it possible that ED nurses might also be uncomfortable when interacting with those with ID, and could this discomfort influence the care that is received? Furthermore, with the increased utilization and overcrowding of EDs, already busy nurses will be required to become more task-oriented rather than focused on fostering quality nurse-patient relationships.5Since caring for individuals with ID is often complex and time consuming, time itself becomes an important component in the delivery of nursing care to this population. For example, many individuals with ID have difficulty communicating their needs effectively, yet some of these individuals may be accompanied to the ED by a person who is unfamiliar with the specific care issues or who is unable to assist with patient communication. These issues factor into a potentially complex interaction when nurses encounter those with ID in the emergency room setting.

How comfortable and prepared are emergency nurses to respond to the unique care needs of this vulnerable population? The purpose of this study was to explore the nurses’ experiences and perceptions of caring for individuals with ID in the emergency department.



This study was implemented in the spring of 2004 utilizing a descriptive, exploratory, qualitative case study design. The case study research design was employed for the purpose of “investigating activities or complex processes that are not easily separated from the social context within which they occur.” 13 Two emergency departments, both academic medical centers, were included in this study. Minimally structured interviews continued until saturation (i.e., data collection) became repetitious and no new thematic concepts were discovered.



Purposive sampling of 23 emergency nurse volunteers was obtained from two academic medical centers located more than 100 miles apart. One facility was located in an urban environment, while the other was located in a more suburban environment. It was expected that ED patients would likely represent the urban, suburban and semi-rural communities surrounding each facility. Purposive or purposeful sampling selects participants in qualitative research for their experience with the culture, phenomenon or social process of interest, 14 in this case the experience of providing care for persons with ID in the emergency room setting.


Study Instruments

Qualitative interviews consisted of mostly open-ended and several close-ended questions with probes used to direct the interview. The interview guide (see Table 1) included demographic information such as age, level of education (RN diploma, AD, BSN, MSN or Doctorate), length of time worked in the ED, number of those with ID for whom the participant provides service and evidence of any formal training in working with developmental disabilities, specifically ID. Participants were asked to describe their perceptions, including their experiences, differences in care needs, resources and knowledge needed to provide care specifically for those with ID.


Table 1. Interview Guide: ED Nurses Perceptions
  • Age
  • Sex
  • Level of Education: RN Diploma AD BSN MSN Doctorate
  • Length of time worked in the ED
  • Have you had any formal training in working with individuals with intellectual disability (ID)?
  • Can you estimate how many ID clients you have worked with during the past 2 years?
  • What are your experiences in working with individuals with ID?
  • Are there issues that arise when caring for these individuals? If so please explain.
  • Do you have any thoughts about what might improve the ED care provided to the ID individual?
  • Is caring for the ID individual different than other individuals? If so, please explain.
  • How does the fact that the individual has ID impact your ability to provide care?
  • Is there any difference in the types of follow-up care that an ID individual receives?
  • What resources or knowledge would help you in providing care for the ID individual?
  • Is there anything you’d like to add that has not been discussed regarding the nursing care of individuals with ID?



ED nurses were invited to participate in the study during their workday by the researchers. Qualitative interviews lasted approximately 45 minutes and were conducted in a private office within the ED. Interviews were audiotaped and transcribed verbatim. Data were anonymous and confidential. Researchers used participant observation as an alternate source of data for enhancing triangulation of information gathered through the interviews.

Researchers took descriptive field notes related to individual interviews (i.e., nonverbal behaviors and other contextual information), including important information that is often shared while the researcher and participant are parting, and captured post-interview information by making field notes immediately after interview was completed. In addition, researchers recorded reflective field notes to document their own responses to the interviews and the overall research process.


Data Analysis

A panel of eight nurses with a minimum of three years to a maximum of 15 years experience in disabilities nursing and in the direct care of individuals with ID reviewed the interview guide for face validity. The 23 taped interviews and field notes were transcribed verbatim. The researchers listened to the tapes while reviewing transcriptions for accuracy. Data collection, analysis and verification of the development of thematic explanations occurred simultaneously throughout this study.

Three nurse researchers applied content analysis (i.e., the process of identifying, coding and categorizing the primary patterns in the data). Data were coded into meaningful categories according to themes and concepts that were recurrent throughout the data. Analysis of data was ongoing throughout the process of data collection, transcription and repeated readings of the text by the researchers. Beginning with an initial overview of the nurses’ experience, researchers progressed to a more focused reflection and interpretation of data. Interpreter agreement as part of the content analysis was utilized as a measure of consistency during the independent coding process. A nurse expert with more than 16 years of ED experience reviewed interview notes, categories, themes and interpretations of findings for face validity. Summary data were shared with nurse participants for validation of findings. Descriptive statistics were used to provide summary profiles of the subjects.



Methods of establishing trustworthiness in qualitative studies differ from those used in quantitative research. Qualitative research uses methods that are consistent with the paradigm of naturalistic inquiry.14-15 In this paradigm, credibility is the equivalent of internal validity, transferability is the equivalent of external validity, dependability is the equivalent of reliability and confirmability is the equivalent of objectivity. These measures to ensure rigor in qualitative research were applied to the current study.

Credibility (the degree to which data analysis is realistically reflected) was established through peer debriefing and member checks. Peer debriefing permitted the researchers to test ideas about emerging themes and to discuss relevant issues. For this study, an audit trail was maintained of the raw data of interview tapes, products of data reduction and field notes. Member checks, described as the most important technique for establishing credibility,14-15 allowed researchers to share emerging themes with participants for their feedback, or confirmability.


Human Subjects

Institutional Review Board (IRB) and approval to conduct the study at both medical centers was obtained. The researchers approached the ED nurses at work, and explained and reviewed the consent form with each participant. Confidentiality was safeguarded through a system of coding (i.e., participants were identified only by code numbers), which was maintained in a locked file cabinet in a locked office by the lead researcher.



The majority of the nurse participants were female (96%) with a mean age of 40 (standard deviation [SD] 9.7 years). Their ages ranged from 23 to 59 years. Educational levels included: Diploma RN (44%), BSN (38%), AD (22%), and MSN (4%). The mean number of years working in the ED was 8 years, with a range of 1 to 22 years experience.

The findings of this study are presented as three major themes representing the emergency nurses perceptions and experience in working with this population. These include: 1) knowledge limitations, 2) communication challenges and 3) lack of comfort and frustration. Knowledge limitations were related to lack of formal training and experience in the care of those with ID. Communication challenges included difficulties sending and receiving messages when the nurses encountered ID patients in the ED. The theme of lack of comfort and frustration focused on care issues, including the combination of feeling ill-prepared to address the specific needs of this population, the unpredictable behavior of the individual patient, the influence of stigma and the additional time demand often required in providing service for those with ID.


Theme 1: Lack of knowledge and experience in providing care

In analyzing the data, a general lack of knowledge about this population was most evident and referred to the lack of formal training in nursing education coupled with limited experience in actually caring for ID patients. Participants were asked whether they had formal training, including any classes or education, in working with ID. In addition, they were asked about their experiences since graduation and whether they had attended any continuing education on ID. Most nurses could not recall classes in nursing school related to the topic of intellectual disability or commented that it may have been briefly addressed (i.e., “touched on”) in either their pediatric or psychiatric rotations. Only one person identified a continuing education program related to information about group homes. The following comments provide examples:

“You know I honestly don’t remember. They probably touched on it in like psychology and stuff like that.”

“From what I remember it was in pediatrics….you know like a discussion maybe about it, but not how to deal with….maybe just like a brief history on mental retardation.”

“Um, definitely not in continuing ed., maybe in my psych courses in my undergraduate nursing.”


Individual clinical experience with ID varied from infrequent to numerous encounters with “at least 50 or 60 patients.” The majority of respondents acquired clinical experience following their graduation from nursing school; most respondents could not recall any clinical experiences with ID patients in their generic nursing school programs. In addition, two respondents expressed confusion regarding mental illness and intellectual disability. The following comments illustrate the previous points:

“I’m thinking in geriatrics we saw more of it, because we took care of more of the chronically ill, mentally handicapped patients.”

“I mean we went to a home where there was all trach care [referring to a tracheostomy], that’s all they did was patients with trach’s, and half of them had mental retardation, and half of them were not. So we spent a day or two there, learning about trach’s and taking care of patients with trach’s.”


The lack of formal classroom instruction and clinical experience was summarized succinctly by one nurse who stated: “My experience is so limited, I don’t even know what I don’t know.”


Theme 2: Communication challenges including difficulties sending and receiving messages

The next dominant theme following the expression of a lack of classroom or clinical experience in managing the care of the individual with ID dealt with communication challenges. These communication challenges included the respondents’ difficulties sending and receiving messages while interacting with the individual with ID. The following examples illustrate:

“There was a, I wouldn’t say it was negative. It’s just more difficult to communicate because some aren’t able to communicate.”

“Communication, care giving, I mean it’s difficult. They don’t recognize, they don’t know you, they don’t always want to open up to you.”

“‘Cause I think with mentally retarded you don’t know if they’re not able to speak well it doesn’t mean they can’t understand, or maybe they can’t understand but they can speak well. You’d have to figure out what’s going on and tailor your care to their needs.”


In explaining these communication difficulties, some nurses questioned their ability to accurately assess the patient. This, in turn, contributed to a sense of inadequacy in being able to assess the effectiveness of care provided, as expressed in the following statements:

“The communication with the patient, you still don’t know what they want or it’s hard to tell if he was having pain, he couldn’t tell you where his pain was so as far as adequately medicating him, you never knew if he was getting enough pain medication.”

“The young girl I had yesterday has MR and she had belly pain. The most difficult thing was assessing her pain level, because she intermittently would be moaning but then would be able to answer questions, so to give her pain medication in effect take care to help her, I had to determine if she was truly in pain which was very challenging because she was moaning. She is very verbal but her answers aren’t always appropriate. So determining whether or not she was really in pain was really difficult and I don’t know if I was good at it.”


A few nurses compared communication challenges as similar to working with Alzheimer’s or stroke patients. Others reported that communication was facilitated when a caregiver familiar with the individual accompanied them to the ED, as reported in the following:

“And then someone who you know can help with speech communication problems, who understands them. Some of them don’t have the clearest speech. I think our biggest thing is being able to effectively communicate with them. So we can educate people in advance to come in with someone who sees them a lot and understands whatever kind of language barrier they have or their hand gestures or facial experiences.”


Theme 3: Lack of comfort and frustration in providing care

Many nurses expressed a lack of comfort and frustration in providing care for those with ID. This discomfort was related to communication difficulties and the lack of classroom or clinical experience with ID as discussed above, and to a concern that patients’ individual behavior is unpredictable. The following two examples illustrate respondents’ concerns:

“I know that one of my experiences that I had, he was profoundly mentally retarded, he could just flip, like lash out at like the drop of a hat, I mean he was a really nice man, but then just like that he could be aggressive. So his group home person stayed with him. But I remember taking care of him I was a little uncomfortable at first thinking that might happen, but it never did.”

“It’s difficult. She (individual with ID) was quite unpredictable and you couldn’t pretend you had to keep an eye on her constantly all the time. And when you are dealing with a busy department and we are taking care of three or four critically ill people, it gets hard to keep an eye on her all the time.”


However, one nurse observed that for some nurses the discomfort was probably influenced by a stigma that is associated with ID. This nurse explained: “How is care different for the mentally retarded patient as many of our trauma, stoke, or our patients under the influence of drugs and alcohol can’t communicate effectively with us, and yet we are able to assess and treat them?” The following two examples illustrate this discomfort and the need to seek support from staff with more experience in care of those with ID:

“Yes, I’m not personally; I’m not comfortable working with mentally challenged. I mean, I’m just not comfortable. And we just don’t see a whole lot, and when someone does come through the emergency room, they always have a caregiver with them. On the floors, they don’t always.”

“There are enough people here to have support staff so that if someone is uncomfortable there is someone with experience who has worked with patients with MR or dementia who will go in and provide support or know how.”


Because of all of the above, nurses described needing more time in managing the care of those with ID. But, they also reported frustration related to inadequate staffing and a lack of time, which prevents them from being able to focus their care accordingly. As noted:

“We sort of integrate them into our care but it’s where the frustrations come in cause it’s like OK, I’m supposed to be taking care of this person who has many needs, and I have other people also. So I think we do it already, but it’s not written out, and sometimes when the crap hits the fan you really cut close, and you don’t have much leeway in saying OK I have extra help. We always manage it’s just sometimes it’s not as easy as other times.
Well the fact that they don’t always understand exactly what you’re doing to them. And then, it just takes a lot more time than you have to spend with them just so you’re not rushing into anything with them to scare them or to get them upset. So it’s not like, with your typical patient you can sit and say ‘this is what I’m doing, this is why I have to do this’ you just have to really take a lot more time with them.”



The nurses studied perceived care for the ID patient to be difficult due to communication barriers and a general lack of experience and knowledge in providing care for this population. They identified deficits in their educational and clinical experiences in working with those with ID. In addition, the nurses expressed a lack of comfort and frustration related to nursing care issues, which could also be attributed to their feeling ill-prepared to address the specific needs of this population, the unpredictable behavior of the individual patient, the influence of stigma and the additional time demand often required in providing service for those with ID.

The stigma regarding ID that has been linked to societal misunderstandings, even among many health care professionals, was also identified by the nurses in this study. Similarly, a study of ED physicians reported that some physicians were uncomfortable when interacting with individuals with ID, which influenced the assessment and management of these patients in the ED. 12 Nurses in this current study identified discomfort and frustration in the care of this population and noted the stigma that accompanied the ID diagnosis. The discomfort that has been described by health care professionals when they interact with ID patients often influences the quality of care provided16-17 and exacerbates the individual burden for persons with ID.1 Thus, the stigma and general lack of knowledge about ID negatively impacts the health care and quality of life of individuals with ID.

Because of their increased longevity, individuals with ID will confront the same chronic illnesses (i.e., cardiovascular disease, cancer, diabetes) that affect the general aging population.18-20 Individuals with ID also have an increased prevalence of certain health conditions, including thyroid disease, seizure disorders, obesity, ocular anomalies and poor oral health.20-23 Additional health care services will therefore be needed as this population ages. As previously noted, in addition to the uninsured and homeless, individuals with ID tend to be high utilizers of emergency services for acute, psychiatric and primary care needs. 1 The increase in age of persons with ID will also result in an expected increase in hospital and ED visits. This will require nurses to increase their level of expertise with this population, which, according to this study, was challenging for this group of ED nurses.

Nurses in a variety of practice settings need to plan for providing health services for individuals with ID. The life expectancy for those with ID is increasing, and they likely will have more complex needs as they age. Knowledge of the experiences of ED nurses will assist other nurses to problem solve and advocate for holistic, competent care. An understanding of nurses’ perceptions, as identified by this study, factors into both the quality of and access to care for this vulnerable population.



Nursing opinions and attitudes regarding this vulnerable population is a topic not well articulated in the nursing literature. Nursing experience and classroom instruction with this population is limited. Communication difficulties and the stigma associated with ID can influence the nurse’s approach to the individual with ID in the ED. This study recognized the importance of context and the perceptions of practicing nurses as valuable in understanding the care experience of individuals with ID in this setting. Generalizations to nurses outside the study participants are, however, not relevant.



Advances in medicine, treatments and technology are helping individuals with intellectual disabilities live longer. Additional health care services will be needed as this population ages, as with increasing longevity they are likely to increase their utilization of the ED for emergent and non-emergent care.

This qualitative case study of nurses in two emergency departments identified three themes related to the nurses’ perceptions and experience in working with this population. These include: 1) knowledge limitations, 2) communication challenges and 3) lack of comfort and frustration.


Practice and Research Implications

The increased understanding of emergency nurses’ experience provided by this qualitative study has important clinical implications for nurses and caregivers of those with ID. Nurses in all practice settings, therefore, will need to plan to provide care for those with intellectual disability, as those with ID have greater health care needs when compared to the general population.

The nurse participants in this study identified knowledge deficits related to the care of those with ID, expressing a lack of preparation in their nursing school experience. Nursing curriculum, therefore, should include instruction regarding caring for individuals with intellectual disabilities. Additional emphasis should be focused on the effects of aging in this population, since until recently many individuals with ID were not living into their middle and elder years. In courses where therapeutic communication skills are developed, communication skills directed toward those who are mentally challenged should be included. Further, the nurses’ role will need to expand to include general advocacy, training, holistic care and leadership, since individuals with ID often experience great disparity when accessing health care services.

This poorly studied, vulnerable population could benefit from scholarly knowledge generated as a result of research.Nurses should use the findings in this study to explore their own experiences and knowledge deficits related to this population. Knowledge of these experiences will assist nurses to problem solve and advocate for holistic, competent care. Nursing knowledge and attitudes regarding this population is a topic not well articulated in the nursing literature, and future studies should be designed to contribute to the knowledge base. Hopefully, these efforts will translate into improvements in the quality of care and life for those with ID.



  1. Pasic J, Russo J, Roy-Byrne P. “High Utilizers of Psychiatric Emergency Services.” Psychiatric Services. 2005;56:678-84.
  2. American Association on Intellectual and Developmental Disabilities. Washington, DC: AAMR; c1995-2006 [updated 2006 Nov 2; cited 2006 Dec]. www.aamr.org/About_AAMR/new_name.shtml
  3. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders DSM-IV. 4th ed. Washington, DC: American Psychiatric Association; 1994.
  4. American Association on Intellectual and Developmental Disabilities. Washington, DC.: AAMR; c1995-2006 [updated 2005 Mar 11; cited 2006 Dec]. Definition of Mental Retardation. Available from: www.aamr.org/Policies/faq_mental_retardation.shtml.
  5. Houghton BM. “Caring for people with Down syndrome in accidents and emergencies.” Emergency Nurse. 2001; 9(2):24-32.
  6. The President’s Committee for People with Intellectual Disabilities. Washington, DC: PCPID [updated 2006 Oct 16]. Available from: www.acf.hhs.gov/programs/pcpid/pcpid_mission.html
  7. Kaplan H, Sadock B. Synopsis of Psychiatry. Baltimore, MD: Williams & Wilkins; 1998.
  8. Braddock D, Hemp R, Rizzolo M, Parish S, Pomeranz, K. The State of the States in Developmental Disabilities: 2002 study summary. University of Colorado, Coleman Institute for Cognitive Disabilities and Department of Psychiatry; 2002.
  9. Fisher K, Kettl P. “Aging with mental retardation: Increasing population of older adults with MR require health intervention and prevention strategies.” Geriatrics. 2005;60(4): 26-30.
  10. Horwitz S, Kerker B, Owens P, Zigler E. “The health status and needs of individuals with mental retardation.” Department of Epidemiology and Public Health, Yale University, New Haven, Conn. [2000; cited 2001 May]. Available from: www.specialolympics.org/Special+Olympics+Public+Website/English/Initiatives/Research/Health_Research/Health+Status+and+Needs.htm
  11. Anderson L, Lakin K, Mangan T, Prouty R. “State institutions: Thirty years of depopulation and closure.” Mental Retardation. 1998;36:431-3.
  12. Grossman S, Richards C, Anglin D, Hutson H. “Caring for the patient with mental retardation in the emergency department.” Annals of Emergency Medicine. 2002;35(1):69-76.
  13. Cutler A. “Methodologic failure: The use of case study method by public relations research.” Public Relations Review. 2004;30:365-75.
  14. Speziale HJ, Carpenter D. Qualitative Research In Nursing Advancing the Humanistic Imperative. Philadelphia: Lippincott Williams & Wilkins; 2007.
  15. Munhall PL. Nursing Research A Qualitative Perspective. 4th ed. Boston, MA: Jones & Bartlett; 2007.
  16. Betz C. “Surgeon General’s report on health care needs for people with mental retardation.” Journal of Pediatric Nursing Care of Children & Families. 2002; 17(2): 79-81.
  17. National Institutes of Health, National Institute of Child Health & Development. Bethesda, MD. [updated 2006 Sept 1]. “Closing the gap:A national blueprint to improve the health of persons with mental retardation.” Surgeon General’s Conference on Health Disparities and Mental Retardation, U.S. Department of Health & Human Services; 2001 Dec 5-6; Washington, DCwww.nichd.nih.gov/publications/pubs/closingthegap/
  18. Barr O, Gilgunn J, Kane T, Moore G. “Health screening for people with learning disabilities by a community learning disability nursing services in Northern Ireland.” Journal of Advanced Nursing. 1999;29:1482-91.
  19. Evenhuis H. “Medical aspects of aging in a population with intellectual disability: Mobility, internal conditions, and cancer.” Journal of Intellectual Disability Research. 1997;41(5).
  20. Cooper SA. “Clinical study of the effects of age on the physical health of adults with mental retardation.” American Journal on Mental Retardation. 1998;102(6):582-9.
  21. Lennox NG, Kerr MP. “Primary health care and people with an intellectual disability: The evidence base.” Journal of Intellectual Disability Research. 1997;41:365-72.
  22. Beange H, McElduff A, Baker W. “Medical disorders of adults with mental retardation: A population study.” American Journal on Mental Retardation. 1995;99(6):595-604.
  23. Howell S. “Situations vacant: Doctors required to provide care for people with learning disability.” British Journal of General Practice. 1996;59-60.


Kathleen Fisher, PhD, CRNP
Associate Professor
Drexel University
College of Nursing and Health Professions
Mail Stop 501
245 North 15th Street
Philadelphia, PA 19102
Tel: 215-762-1208
Fax: 215-762-1259
E-mail: [email protected]

Christine Frazer, MSN, CNS
Instructor of Nursing
Penn State University
School of Nursing, Hershey Campus
600 Centerview Drive
1300 ASB/A 110
Hershey, PA 17033-0855
Tel: 717-531-8764
E-mail: [email protected]

Catherine Hasson, MSN, RN
Clinical Assistant Professor
Drexel University
College of Nursing and Health Professions
Mail Stop 501
245 North 15th Street
Philadelphia, PA 19102
Tel: 215-762-8507
Fax: 215-762-1259
E-mail: [email protected]

Fredrick Orkin, MD, MBA, MSc
Professor of Anesthesia and Health Evaluation Sciences
Penn State University
400 Weekeepeemee Road
Woodbury, CT 06798-1621
E-mail: [email protected]

Health Services to Adults with Intellectual and Developmental Disabilities in British Columbia : Building Partnerships in our Communities

Louise Le Cavalier, RN, BSN, MN



British Columbia’s (BC) Health Services for Community Living (HSCL) program is a province-wide government funded initiative that targets the delivery of community-based nursing and rehabilitation services to adults with intellectual and developmental disabilities (I/DD). In this article, the evolution of services to individuals with I/DD in BC is chronicled and information is presented about BC’s HSCL program’s organization and activities. The unique roles and community partnerships of HSCL nurses are examined. Important trends, issues and challenges that impact service delivery are discussed..



Individuals with intellectual and developmental disabilities (I/DD) face unique challenges. Although these persons’ rights for dignity, health and safety, independence, self-determination and community inclusion are increasingly recognized, more can be achieved to improve support systems that promote the quality of their lives. In particular, health and social services must be able to meet the needs of individuals with I/DD in our communities. In British Columbia (BC), institutional care came to an end in 1996, when Woodlands, the last of three large provincial institutions for persons with I/DD, was closed. A wide range of government funded services are now based in the community and British Columbians with I/DD live, work and play in BC’s urban and rural communities, actively participating in mainstream society. Creative initiatives and partnerships support the development of innovative residential and non-residential programs that are tailored to meet individuals’ unique needs. BC’s Health Services for Community Living (HSCL) program plays an integral role in promoting individuals’ health, safety and access to health care.

In this article, the evolution of services to individuals with I/DD in BC, including the HSCL program, is chronicled, and various trends and issues that impact the delivery of community health nursing services are discussed. The unique and rewarding role of the community health nurse in the HSCL program is examined in light of some the presenting challenges.


Background History

Prior to the 1870s, overcrowded city jails in Victoria and New Westminster provided social housing for the criminally insane, the confused elderly, the difficult to handle orphans, the feeble minded and the mentally ill. It became increasingly obvious that it would be desirable to construct a suitable and separate place for the lunatics, leaving the present jails for the criminals. The first Insane Asylum was built in Victoria, BC in 1872, but overcrowding resulted in the construction of a larger facility a few years later. Located beside the new federal penitentiary in New Westminster, the Provincial Asylum for the Insane opened its doors for occupation in May of 1878. In 1897, the new Hospitals for the Insane Act superseded the previous Insane Asylums Act of 1873, and the asylum became officially known as the Public Hospital for the Insane (PHI). By 1899, difficulties in accommodating retarded patients with the mentally ill were first reported.1 In the absence of any pediatric services, the PHI had gradually taken in unwanted children with any type of physical, mental and behavioral problem, including those with mental handicaps. Criticism mounted about overcrowding, poor hygiene, unfit care, fire and other safety hazards, and the helplessness of patients at the PHI. In 1913, Essondale opened, serving as another institution for the care of the mentally ill in nearby Coquitlam. By 1929, construction started at Essondale to build additional facilities for housing of frail patients, and the formal training of psychiatric nurses was offered for the first time in BC. In 1937, it was suggested that a separate institutional school for the mentally retarded be set up at the PHI site in New Westminster to free the PHI for the intensive treatment of psychotic patients.

In 1950, the PHI was again renamed to the Woodlands School (TWS), in recognition of its educational emphasis as an institutional school and treatment center for the mentally handicapped2. TWS gained national recognition as BC’s Phenylketonuria Centre where Dr. Bluma Tischler, the first pediatrician to work at TWS, was researching an experimental diet for children suffering from Phenylketonuria. In 1958, overcrowding at TWS caused the provincial government to convert the Tranquille facility in Kamloops , once used as a sanatorium for tuberculosis patients, to a congregate care facility for persons with I/DD. In 1976, a third facility was created at Glendale Lodge near Victoria in response to long waiting lists for services.

Beginning in the 1960s, great efforts were initiated to return people back to their communities. Community-based services developed, including recreational, social and educational programs; sheltered workshops; foster care; and boarding home services, in keeping with similar international trends and in growing recognition of the importance of goal-directed education and rehabilitative training to foster independent living in community. However, it became clear that the challenge rested not in discharging individuals from the institutions, but in creating sufficient and responsive community-based services that would prevent new admissions and readmissions.

In 1974, TWS was once again renamed to Woodlands to reflect that many residents were no longer children attending school. That same year, the administration of Woodlands was transferred from the Department of Mental Health to the Department of Human Resources, later to become Ministry of Social Services and Housing (MSSH). This was significant, as it reflected the progressive evolution of services for people with mental handicaps around the world and a change in the philosophical orientation from the biomedical to a social model. This new model emphasized that individuals with I/DD were not sick but in need of specific social services and resources in their local communities.


Closure of Institutions in BC

Throughout the 1970s, families and advocates of the BC Association for the Mentally Retarded (now known as BC Association for Community Living) began calling for the closure of large institutions and the further development of community services. Their work and advocacy, combined with the emerging philosophy that people with I/DD had the right to live ‘normal’ lives in community (normalization) and the UN Declaration of 1981 as the International Year of Disabled People, supported the trend towards deinstitutionalization in BC. A major effort was launched to deinstitutionalize BC’s mentally handicapped and to create a Community Living Society to guide transition to community placements3. Downsizing began, and by 1985 Tranquille was closed; closures followed at Glendale Lodge and Woodlands in 1996. BC had effectively become the first province in Canada to end the practice of segregating persons with I/DD in large congregate care facilities.


HSCL Program Initiative – Humble Beginnings

As planning for downsizing progressed in the 1980s, community programs and services were considered ineffective in meeting the needs of Woodlands’ more severely challenged and medically compromised residents. In order for individuals to function safely in their new homes and communities, they would require many of the support services once received in the institutions, including health care.

In 1990, an agreement was reached whereby MSSH would provide MOH with dedicated funding and other necessary resources to develop and deliver a network of specialized community-based nursing and rehabilitation services (the HSCL program), nutrition and dysphagia services, preventative dental health services and mental health services. In 1991, the Provincial Advisory Committee on Services for Persons with Mental Handicaps proposed a framework of health and social services specifically targeted to adults with I/DD4. It included HSCL, residential services (funded residences, temporary respite and emergency residential care), and non-residential services (day services; supported work placements; self-help skills training and support; behavior and communication support; social work and case management; community care facilities licensing; and family support services). The committee provided leadership in community development and public consultation leading up to the full implementation of services.

The HSCL program was launched in June 1993. Government and community representatives, seasoned institutional staff and community health practitioners joined together in a provincial inauguration event in Vancouver.

Nurses would need to market the HSCL program and reach out to communities in order to gain their trust and acceptance. Unlike their counterparts from the institutions, many community-based nurses lacked the clinical experience and necessary knowledge and skills to care for individuals with I/DD, having had very little if any previous exposure to this client group. Hence, they felt inadequate and ill prepared. It was a slow, gradual and often painful process for these novices who worked tirelessly to familiarize themselves with this interesting service sector, where strong personalities, a complex maze of organizations and strange politics combined to play prominent roles! A retrospective look makes it abundantly clear that a better coordinated approach to providing educational,administrative and clinical support to HSCL nurses and therapists would have benefited everyone concerned, as the HSCL program was being introduced in BC. Lesson number one had been learned, unbeknownst to us!


HSCL – Structure and Organization


Specialized Nursing and Rehabilitation Services

In BC, individuals with I/DD may receive the same health services from the same health care providers as persons without I/DD, with the addition of specialized nursing and rehabilitation services (HSCL), mental health services and dental health services that target individuals with I/DD. Since 1997, dedicated funding transfers to BC’s five health authorities have facilitated the regionalization of all nursing, rehabilitation, mental health and dental health services, which, with the exception of mental health services, are provided under the umbrella of Home Health.

This framework operates in most of BC to promote a high quality of service while allowing for the maximum integration of persons with I/DD in mainstream society, with access to all available health services. The exception is in the Capital Health Region ( Victoria , BC), where HSCL are fully integrated with Home Care Nursing and Community Rehabilitation Services. In this region nurses and therapists provide home health services to all consumers, regardless of the existence of any I/DD. Anecdotal reports indicate that many of these nurses find the full integration of home health services with HSCL problematic, as it fails to recognize the unique aspects of I/DD nursing practice, which presents difficult challenges for health professionals, community living service providers and health care consumers.

The success of the HSCL program depends largely on the nurses’ opportunities to build healthy and sustainable partnerships with individuals and families, service providers and community stakeholders, and these can be extremely time consuming processes. HSCL nurses, who work only with individuals with I/DD, can afford to dedicate all of their time and other resources to HSCL activities, and thus to focus all their attention on the multi-dimensional aspect of service delivery that is so characteristic of I/DD nursing practice. Dedicated HSCL nurses are then able to appreciate more fully the unique health needs and responses of individuals with I/DD and they understand the community resource management issues that influence the provision of health care in this service sector. Therefore, HSCL nurses are more likely to find themselves in a better position to influence systems for needed change. They have more frequent opportunities to develop the specialized clinical knowledge and skills needed for I/DD nursing practice, which in turn promotes more efficient service delivery and better outcomes.

Indeed, the idea of specialized services has been a highly sensitive issue that caused quite an “uproar” initially. Strong proponents of the community living movement, including some parents, opposed the idea of using specialized services. They preferred relying on already established generic services in the community. Over time, it was recognized that both generic and specialized services can co-exist, complimenting each other to promote the health and safety of individuals with I/DD. Gradually, individuals and families, service providers, community partners and HSCL nurses have discovered the compatibility of their values and their deep commitment to serving the needs of individuals with I/DD. Today, they collaborate to maximize equal access to specialized and generic health services for individuals with I/DD.


Referral to Other Health Agencies

HSCL nurses recommend, initiate and coordinate referrals to other appropriate health agencies, including other generic services offered in Home Health. These include, but are not limited to, home care nursing, physiotherapy and occupational therapy, speech and language therapy, long term care, palliative care and geriatric assessment teams. Other professional supports that include specialization in complex seating and dysphagia services are also available to HSCL nurses and individuals with I/DD. Services augment already existing core services in the community in order to avoid duplication of services. Resources are allocated according to regional and operational needs. The ongoing participation of HSCL nurses, after referrals are made, ensures the smooth coordination of services, the maintenance of communication between key players, the support of care providers and the joint evaluation of outcomes.

Feeding and gastro-intestinal disorders are common in individuals with I/DD, presenting multiple implications for community care5. Resources for dietetic services are inadequate in many parts of BC, as evidenced by the numerous reports of HSCL nurses and dietitians. Dietitians manage heavy caseloads and demanding work schedules, and their abilities to monitor individuals’ responses to treatment plans are somewhat limited. HSCL nurses assist by investing much of their time and resources in monitoring individuals’ nutritional health, thus filling in existing gaps in services, whenever possible.

HSCL program enhancements in nursing and rehabilitation therapy are needed in response to increased demand for service. In particular, there is a need to provide better access to physiotherapists who are skilled in developing individualized movement and exercise programs for individuals with I/DD who have significant mobility impairments, in order to limit their further loss of function. HSCL nurses and therapists manage heavy and frequently complex caseloads, reducing their availability to provide community health support to individuals and their care providers in need. Decision making regarding HSCL funding and resource allocation is a lengthy process that can seem burdensome. Despite these obstacles, HSCL nurses and rehabilitation therapists work very hard to serve large numbers of individuals and to provide an optimal quality of care.


Mental Health Services

Mental Health Services (MHS) are governed under the responsibility of the provincial health authorities, and five MHS teams are located strategically around BC6. Ministry of Children and Family Development (MCFD) social workers initiate referrals and manage waiting lists, with input from MHS teams, HSCL nurses and other members of the individuals’ community support teams. HSCL nurses collaborate with MHS teams, individuals and families, social workers and service providers, to conduct assessments of the psychiatric and behavioural support needs of individuals with I/DD, implement various treatment and behavioral support plans, monitor individuals’ response to treatment and provide training and education.

Individuals with co-existing I/DD, a mental illness and/or severe behavioural disturbances often require intensive community support services. Behaviors of more challenged individuals can create potentially unsafe situations in the community, occasionally exceeding prudent risk. Adults with dementia whose behavioral support needs exceed available community resources also accentuate caregiver burden. Long waiting lists and limited resources in outpatient services reduce timely access to MHS. A critical shortage of in-patient psychiatry services also strains community resources. Collaboration among all involved parties is critical to the success of all MHS intervention.


Service Principles

All services provided by MCFD Adult Community Living Services branch and the HSCL program are guided by a set of core values and principles7. In Table 1, these are described briefly.


Table 1: Core Values and Service Principles*
Value and PrincipleDefinition
Respect for the IndividualRespect of individual’s dignity and human rights
Services are designed to meet person’s individualized needs
Self-DeterminationServices enhance individual’s right to control his/her own destiny
Services promote participation in planning and decision making
Person-Centered Service PlanningServices are developed through an individualized planning process
Planning process recognizes and supports individual’s unique characteristics, strengths and needs
Personal service plan is reviewed on a regular basis
Family InvolvementFamily or advocate is key resource and support in all personal service planning
Services support family involvement and relationships
Family support agencies are utilized for individuals without natural family support
MaximizingServices provide support and opportunities for maximizing individual’s physical, psychosocial, intellectual, affective and developmental growth
Maximizing Environmental ChoicesServices are provided in environments that allow as much individual freedom of expression as possible
Environments provide safety and security
Community InclusionServices support integration of people with I/DD into the day-to-day activities of life in the community
Services support access to same lifestyle and age appropriate services available to non-disabled people in the community

*Source: Ministry for Children and Families & Ministry of Health (1997). Health Services for Community Living: Client Health Care Planning Process Guidelines. Government of British Columbia : Victoria, BC.


Program Eligibility for Services

Individuals must reside in BC, be 19 years of age or older and possess a developmental disability (measured intellectual functioning of approximately 70 IQ or lower, with onset before age 18 and measured significant limitations in two or more adaptive skill areas).


Admission Process – Intake and Screening

Anyone with concerns regarding the health and/or safety of an individual with I/DD may refer to HSCL. Most referrals are initiated by social workers and service providers in local communities. The HSCL nurse coordinates all service intakes and screening to assess appropriateness of referrals and to estimate service needs. Collaborative teamwork begins immediately upon referral, when the nurse communicates with the individual’s community support team to initiate the health care planning process. Meetings are held in various community settings to complete assessment process and clarify service requirements and priorities.


Service Goals and Objectives

Service goals and objectives focus on maximizing individuals’ potential for health, safety, independence and community integration. Inherent to HSCL program philosophy is the recognition that each individual has the right to lead a high quality life with appropriate community support. Community health nursing services include:

  • screening and assessment of individual needs
  • health care planning
  • health promotion and teaching
  • caregiver education and training
  • professional consultation
  • liaison and referral to other health agencies
  • treatment and direct care
  • consumer advocacy
  • coordination of health services
  • hospital discharge planning
  • transitional planning (i.e., from children to adult services)
  • case management.


Health Care Planning Process Guidelines

These guidelines promote a respectful, holistic, systematic and inclusive approach to health care planning for individuals with I/DD8. A client-centered approach, effective communication, joint problem solving and collaborative teamwork are seen as integral to effective health care planning. Guidelines outline steps of the health care planning process, recording and reporting mechanisms, lines of communication and respective roles and responsibilities of community partners. Conflict resolution guidelines are used to address issues that cannot be negotiated successfully by other means.


HSCL Program Resources

A number of joint initiatives among HSCL, MCFD and service providers have resulted in the creation of various sets of guidelines and supporting documents to assist individuals and their families, HSCL nurses and other health professionals, ministry social workers and care providers as they respond to some of the extra-ordinary needs of individuals with I/DD. The following examples provide a glimpse of some of the issues that HSCL nurses deal with in their everyday practice and illustrate some of the tools and resources that are at their disposal.


Guidelines for Anticipatory Health Care Planning and Consent to Health Care

Guidelines for anticipatory health care planning and consent to health care provide guidance in facilitating consent for major and minor health care, end of life decision making and anticipatory health care planning8. A decision making hierarchy tool provides direction in the determination of an individual’s capability and demonstrates how to apply BC’s new provincial Adult Guardianship legislation, which can appear cumbersome to users.


In-hospital Support Guidelines

In-hospital Support Guidelines provide assistance to individuals with I/DD who are hospitalized and who require additional in-hospital support that, if withheld, may jeopardize their health and safety9. An individual with highly challenging behavior may require such support. A small discretionary fund is available for such eventualities. The HSCL nurse plays a central role in determining support needs and monitoring use of resources during hospitalization.


Field Guide on Death and Dying

The Field Guide on Death and Dying provides direction when individuals are faced with life threatening illness, are anticipating a planned death at home, or when sudden unanticipated deaths occur10. The guide assists social workers and service providers in preparing for a death, caring for an individual who is dying, and in determining what actions to take following an individual’s death. This comprehensive guide provides information about the roles and responsibilities of parties involved, established reporting and recording mechanisms, the grieving process, and available resources in the community.


The Right to Health Care Project

The Right to Health Care project identified several recommendations, one of which was to strengthen community-based services and expertise. A detailed package of information and resources has been developed that can be used for training purposes in the community11. Issues such as medical advocacy; adult guardianship and consent; health care planning; working in partnerships; effective communication; and documentation are reviewed in this guide.


HSCL Risk Assessment Tool

This tool (unpublished) was developed to capture the complexity of care needs for individuals being served in the Fraser Health Authority by HSCL and the Ministry for Children and Family Development, Community Living Services division. The tool identifies a number of critical factors that are evaluated by health professionals on an ongoing basis and that influence the nature and/or extent of supports needed by individuals with I/DD in their homes and community programs. Individual client factors include stability of health, complexity of care needs and the individual’s ability to direct his/her care. Task performance factors include degree of risk for harm from the task, complexity of task, frequency of task performance, knowledge/skill requirements for task performance and predictability of outcome. Care environment factors examine ongoing needs for assessment, planning, intervention and evaluation by health professional; existence of policies and procedures; unregulated care provider (UCP) training requirements; documentation requirements; mechanisms for UCP supervision and support; competence of HSCL professional; and availability of expert clinical consultation for HSCL professional. UCP factors include number of UCPs required for individual’s care; frequency of staff changes; UCP standard knowledge/skill base; UCP knowledge and skill requirements for delegation of task to UCP; and UCP ability to maintain acquired skill set. The assignment and delegation of tasks to UCPs are issues that HSCL nurses are very familiar with in their work with service providers.


Some Issues and Challenges


Unregulated Care Providers

The lack of mandatory education, particularly in the physical health domain, and the lack of practice standards for UCPs, can at times affect their ability to function effectively with individuals with I/DD who experience illness. As a result, UCPs can find themselves unprepared to deal with the care demands of individuals who suddenly become ill or who are chronically ill. Service provider agencies do not necessarily expect their employees to have earned certification in a related field (i.e., resident care aide, home support worker, special education assistant). High rates of staff turnover and absenteeism, low pay and lack of recognition for the value of community work often trouble this service industry. These issues can limit the quality and consistency of care and reduce care providers’ readiness for learning.

Fortunately, service provider organizations are recognizing that education of care providers is the joint responsibility of all who support individuals with I/DD. HSCL nurses have been very successful in raising standards of caregiver education and subsequently the quality of care within their communities. Nurses are witnessing improvements in the overall performance of care providers who assist in the management of the many and complex health issues that affect adults with I/DD. Care providers are now responding more appropriately and effectively in various situations, with fewer requirements for coaching and direction when making health care decisions on behalf of adults with I/DD. Individuals with I/DD generally enjoy better health with lower rates of preventable illness and unnecessary hospitalization. HSCL nurses continue to work with their partners to improve overall standards of education and quality of community care. The Registered Nurses Association of British Columbia Guidelines for Assigning and Delegating to Unregulated Care Providers clarifies the professional roles, responsibilities and accountabilities of registered nurses who work with UCPs12. The Canadian Nurses Association’s Code of Ethics for Registered Nurses provides direction when ethical issues arise during the process of delegation13.

As a result of the transformation of community living services in BC, mechanisms for monitoring and ensuring adequate standards of service delivery and care in government-funded resources are changing, and so are the roles, responsibilities and accountabilities of community living service providers, community care licensing officers and social workers. Service provider agencies are designing and implementing creative models of residential care, and increasingly, they are accountable for monitoring these resources with less interference from government bodies. Community living service providers work closely with government to contain costs and achieve service sustainability. Nurses continue to monitor the quality of care and services according to their own professional and ethical standards. When issues of concern arise that negatively affect the quality and reliability of services to individuals with I/DD, nurses follow the appropriate channels to ensure that issues are dealt with promptly.


Community Living

In October 2004, BC government passed legislation creating a permanent authority – Community Living BC – it is now responsible for providing services to adults with I/DD and many children and youth with special needs in their home communities14. The Roeher Institute issued a comprehensive report of the work that led the transformation of community living services in BC15. The transformation process began in 2001, and a number of important initiatives were instrumental in informing and consulting with key stakeholders including individuals with I/DD and their families, MCFD social workers, community living service providers and HSCL health care providers. Province-wide training events were held to prepare for the final devolution of community living services to the new authority. Transfer of authority from MCFD to Community Living BC occurred in July 2005. The core components of Community Living BC’s proposed service delivery model, including independent planning support, individualized funding, and centralized contract management will be implemented over the next several months. Social workers’ roles and responsibilities will now be realigned in keeping with Community Living BC’s philosophy and commitment to create options that promote and maximize choice, flexibility and service responsiveness, and support an individualized, person-centered planning approach for individuals with I/DD and their families. The following guiding principles support Community Living BC’s mission and objectives16:

  • Safety, security and well-being of individuals and families are paramount
  • Community is the vehicle for change
  • Individuals and families are the decision-makers
  • All relationships are founded in mutual respect and trust
  • Sustainable supports are developed by introducing flexibility, increasing choice and stimulating innovation and creativity
  • The focus in on planning to prevent crisis
  • Access to flexible and responsive supports is seamless and straightforward
  • The standards of financial performance are consistent with government’s financial security and reporting requirements

This is an exciting time for HSCL nurses and other community partners. Nurses look forward to working collaboratively with the new authority as it implements its revised service philosophy and framework. British Columbians will look to Community Living BC as it provides guidance and leadership into the next promising decades of community living service in BC.


Shortage of Physicians

In a paper prepared by the Canadian Labour and Business Center, a range of trends, factors and issues that influence the future of the medical profession are identified, and a range of trends, factors and issues that influence the future of the medical profession are identified, and a growing shortfall of various kinds of physicians and a critical shortage of family doctors and general practitioners in Canada are reported17. This Reduces Canadian’s ability to access medical care when they need it. In particular, individuals with I/DD are vulnerable because a number of physicians already seem unwilling to assume responsibility for the care of persons with multiple disabilities for various reasons. Physicians are poorly prepared to deal with the health care needs of persons with I/DD18. HSCL nurses ‘ efforts are invaluable in assisting physicians do their work, and establishing positive rapport with individuals’ general practitioners is integral to the ongoing successful management of health issues.


Aging and Chronic Illness

The effects of aging in individuals with I/DD are straining health and social services and resources in BC. The ability to provide the necessary services is limited as a result of reduced funding in recent years and the increasing demands of an aging population. Long Term Care (LTC) eligibility policies are outdated and make it difficult for individuals with I/DD to access the services, unless individuals require extended care. MOH and MCFD officials often disagree on whose primary responsibility it is to fund services for aging adults with I/DD. Community living service providers with limited resources to support aging individuals with I/DD disapprove of individuals’ placements in long-term care facilities (i.e., nursing homes). Generally speaking, they see these environments as unacceptable for individuals who were just deinstitutionalized in the past twenty-five years. Day programs that serve the elderly in the general population have long waiting lists and are not always suitable to support individuals with I/DD, especially those with mental illness and/or behavioral disturbances.

The community support and health needs of individuals with dementia and other chronic progressive illnesses are varied and complex. The implications are far reaching in the community, as supported in the literature19, and they affect the provision of care in the following ways: 1) UCP knowledge and skill competencies increase; 2) UCP staffing requirements increase; 3) UCP education requirements increase; 4) community programs’ operating costs escalate; 5) caregiver burden may result in increased rates of absenteeism and staff turnover; 6) general expectations for other residents may be reduced; 7) daily routines may be disrupted; and 8) costly medical equipment/supplies, and home renovations may be needed.

HSCL nurses are very concerned about the present and future care of aging adults with I/DD. British Columbia community living services lack sufficient means and resources to adequately support the needs of aging persons with I/DD at this time. Financial considerations seem to be the greatest barrier. Nurses need to be creative and resourceful in supporting aging persons with I/DD, their aging parents and caregivers. It is hoped that Community Living BC and HSCL will work well together to identify key issues and tangible solutions that will ensure a brighter future for aging persons with I/DD.


Professional Support to HSCL Nurses

HSCL nurses may feel as if they are all alone at times! In comparison to BC’s other community health nurses, HSCL nurses form a rather small group and are scattered across the province. Unfortunately, there has been a consistent lack of clinical, educational and professional support to HSCL nurses in BC. Nurses in remote parts of BC are especially prone to the lack of opportunities for professional growth and development and networking, and they report feeling isolated. Efforts to continually update a master provincial membership list are more or less successful to help maintain communication and important connections. An annual provincial conference that once provided opportunities for professional support and networking has been discontinued due to lack of necessary funding to support such expenses. This has significantly reduced nurses’ ability to share in the rich and diverse experiences that continue to shape their learning. Nurses do reach out to each other as necessary to consult about various clinical practice issues, and they support one another as well as they can, despite the long distances between them.

MOH initially retained four centrally located FTEs, one each in nursing and rehabilitation and two in medicine, to guide and support province-wide program operations and policy. In 2002, regionalization and the restructuring of programs within government eliminated these consultant positions. Medical consultation is now provided by one physician under contract to the five health authorities, but nurses have no professional clinical support other than to rely on each other. Medical consultation to HSCL nurses is limited, as there is high demand for services in the community sector, where support with a range of issues including health care consent, ethical decision making, health care access and medical advocacy is required, to assist social workers and service providers in areas where HSCL nurses are less accessible. The need for province-wide available clinical nursing consultation and support to HSCL nurses should be addressed. The needs for long-term planning, participatory action and leadership in setting HSCL program policy and facilitating the continuous growth and development of the HSCL program are also real.

There are no professional nursing organizations to support nurses who specialize in I/DD nursing practice in Canada. Therefore, HSCL nurses rely heavily on each other and their colleagues south of the Canadian border to meet their professional development needs. Some nurses have joined the Developmental Disabilities Nurses Association (DDNA) in the United States of America (USA). Membership provides exposure to the professional, educational and clinical issues that affect I/DD nursing and nurses. DDNA, established in 1992, has standards for I/DD nursing practice and a specialty certification, which some Canadian nurses are obtaining. More recently, some HSCL nurses have taken advantage of a collaborative effort between DDNA and HealthSoft, Inc., which has launched an interactive, Web-delivered courseware in Developmental Disabilities Nursing. Response to the educational courseware has been extremely favorable. There is a well documented lack of research-based literature for I/DD nurses20, and this also impacts BC’s nurses’ ability to provide nursing services that are compatible with evidence-based practice.

Province-wide basic core training programs and resources are lacking to support newly recruited HSCL program staff and this jeopardizes the quality, consistency and reliability of program services throughout BC. Nurses with no previous experience in the care of individuals with I/DD frequently receive training “on the job” with very little or any reliable educational support and mentoring. Unlike their counterparts in other Home Health services, HSCL nurses enjoy fewer opportunities in continuing education, professional development and clinical support.

The HSCL program is small in comparison to others in Home Health. It receives less attention from busy managers and administrators . Fortunately, several nurses and therapists have formed their own regional clinical practice councils to create a forum where issues that relate to I/DD nursing and HSCL program operations can be addressed jointly with other health care providers and program managers. Councils have served as stepping stones to upper management, facilitating the resolution of some important issues impacting service delivery across the regions. A significant investment of resources and funding is necessary to facilitate strategic planning and strengthening of HSCL program development activities, in order to ensure a future that is rich with promise for its dedicated health professionals.


The Nature of I/DD Nursing in BC – Thoughts for the Future

Prior to 1993, BC’s nurses with an interest in I/DD nursing worked primarily in large institutions. The HSCL program brought opportunities for community health nurses to assume new roles and responsibilities in relatively new environments outside the walls of institutions. It provided the road map to new partnerships with community-based agencies and organizations supporting individuals with I/DD. Gradually, HSCL nurses have responded to the challenges by establishing their credibility, reliability and professionalism in the delivery of safe, effective, reliable, ethically sound and culturally sensitive care to some of the most vulnerable members of our society. Over time and with experience, HSCL nurses’ multifaceted roles have been shaped and defined more clearly.

As consultants, these community health nurses are an important health resource to individuals, families, caregivers and service providers. HSCL nurses frequently serve as a primary entry point into the health care system and they assist others in navigating a complex maze of health services. As case managers, they promote the smooth delivery, coordination and evaluation of health care services. As educators, nurses facilitate the dissemination of information and education to individuals, families, service planners and care providers. As facilitators, nurses provide guidance and leadership in the health care planning process, promoting collaboration between members of the community support team and facilitating joint problem solving. As advocates, they encourage individuals with I/DD to participate in informed health care decisions and they promote conditions that support individuals’ rights to safe and accessible health care.

HSCL nurses also have an opportunity to influence health and social policy at various levels. They can promote public awareness and understanding of the various health and socio-political issues that impact the lives of individuals with I/DD. HSCL nurses have the ability to influence the perceptions, attitudes and participation of other health care professionals in order to shape a more effective and responsive service delivery on behalf of individuals with I/DD.

As Leonard explains, community partnerships develop through a process of empowerment that is enabled by community health nurses as they transform thinking through dialogue and help in reconstructing a healing environment for all21. Community health action that leads to healthy communities is possible when nurses and community partners engage in meaningful dialogue to develop mutual trust and respect and work together towards their common goals and objectives. In building strong and lasting partnerships in community, HSCL nurses can foster the empowerment of individuals and communities.

The practice of I/DD nursing is both immensely demanding and gratifying. It calls for courage and stamina, maturity and sensitivity, creativity and resourcefulness, and great compassion and caring. In an era marked by unprecedented change in health and social policy governing the delivery of services to individuals with I/DD all over the world, BC’s HSCL nurses are actualizing the true sense and meaning of I/DD nursing practice step by step. The future of I/DD nursing in BC depends on the nurses. The HSCL program has shown steady and significant growth in the past 12 years, and it is evolving in response to individuals and communities in need, albeit its many challenges. BC’s HSCL nurses have built a solid reputation for their self-determination, tenacity and resourcefulness, and their deep commitment to improving the lives of individuals with I/DD is truly inspiring.

But improvements are needed to promote the overall efficiency and effectiveness of HSCL. In particular, HSCL program development and evaluation activities need to be revived. Tools and resources are needed to continually improve the quality and availability of services and to evaluate the appropriateness and effectiveness of services. HSCL nurses must become better educated to contribute more fully to I/DD nursing practice. They must value lifelong learning and seek out information from various sources. Canada may lack some of the necessary professional resources for HSCL nurses, but a number of world-wide organizations that support the health and social needs of individuals with I/DD are showing tremendous willingness to share their knowledge and expertise. In Canada, nurses can do a number of things to continue their learning and professional development. They can join American nursing organizations such as DDNA or they can access the International Journal of Nursing in Intellectual and Developmental Disabilities (IJNIDD). They can obtain access to HealthSoft’s Web-based courseware in I/DD nursing, organize journal clubs, subscribe to various newsletters, form clinical practice interest groups, share important resources and examine case studies. As Broda explains, Canadian university schools of nursing must also incorporate into curricula greater content that reflects the complex health and social needs of individuals with I/DD22.

Although the significant contributions of HSCL nurses are recognized and valued in BC’s health authorities, additional resources are necessary to support the continuing evolution of HSCL, as program vision, philosophy, goals and objectives are realigned within the context of Community Living BC and the new world view on responsive community living service delivery to individuals with I/DD. Canadian I/DD nurses must prepare adequately and proactively, as the future of I/DD nursing gains momentum in the USA and other countries, and as nurses compete for excellence in this relatively new market. Nurses in BC must continue to lobby for increased funding and resources to enhance existing community supports to aging individuals who are experiencing increased health and social needs. They must continue to nurture partnerships that allow entire communities to come together and advocate for better health and social conditions for persons with I/DD. More importantly than ever, nurses must take advantage of the sophisticated technology to reach out to other I/DD nurses and organizations around the world to share in their experiences and learn from each other.



This article recounted BC’s history of the I/DD service sector and the evolution of the HSCL program, a thriving province-wide initiative that targets the delivery of community-based nursing and rehabilitation services to adults with I/DD. The unique roles of HSCL nurses were examined. Important trends, issues and challenges that impact service delivery were discussed.

BC’s HSCL program is relatively young in comparison to other well-established Home Health services. I/DD nursing is developing as a specialized area of nursing practice in North America , not yet formally recognized in Canada, but the limited experience has taught us valuable lessons. The continuing evolution and success of the HSCL program is highly dependent upon the strength of partnerships with communities. Nurses rely upon individuals with I/DD, their families and care providers to teach them, guide them and inspire them as they learn the art and science of I/DD nursing. In their numerous personal encounters with individuals with I/DD, nurses acquire important knowledge and refine their skills to build capacity for more effective and meaningful nursing practice.

HSCL nurses have learned that besides strong community partnerships, they require a clear vision and action plan, coordinated planning, great commitment, collaboration and team effort, and a lot of hard work to achieve service goals and objectives. In sharing the richness of their experiences with colleagues and the general public, nurses promote awareness and understanding, paving the way towards the discovery of new and innovative ways to support individuals with I/DD.

People who were once segregated and confined behind institutional walls are now enjoying life experiences beyond expectations23. Although BC is the first province in Canada to have closed all of its large institutions for persons with I/DD, nurses know that there are no guarantees for future generations. Institutions remain open in other provinces and invisible walls continue to isolate people in their communities24. We cannot afford to grow complacent and must continue the work of others before us in order to create an inclusive and caring society that values diversity and accepts all differences in persons’ abilities and disabilities.

HSCL nurses play an integral role in the community support of individuals with I/DD and they know that they have made a real difference in the lives of adults with I/DD in BC. They will continue to advocate for social conditions that promote better quality of life and health for persons with I/DD. And in doing so, they will continue to advance the cause of justice for all persons with disabilities all over the world.



  1. Adolph V. In the Context of Its Time: A history of Woodlands. Ministry of Social Services, Government of British Columbia: Victoria, BC; 1996.
  2. Adolph V. In the Context of Its Time: A history of Woodlands. Ministry of Social Services, Government of British Columbia: Victoria, BC; 1996.
  3. Ministry of Social Services. Project Life – Living Independently for Equality. Government of British Columbia: Victoria, BC; 1977.
  4. Ministry of Social Services and Housing & Ministry of Health. Planning for the Future: A Proposal for Services for People with Mental Handicaps. Government of British Columbia: Victoria, BC; 1991.
  5. Janicki MP, Dalton A. J, editors. Dementia, Aging, and Intellectual Disabilities: A handbook. Brunner/ Mazel; 1999.
  6. Ministry of Health and Ministry Responsible for Seniors. Protocol for Services: Mental Health Services for Persons with Mental Handicaps. Government of British Columbia: Victoria, BC; 1993.
  7. Ministry for Children and Families & Ministry of Health. Health Services for Community Living: Client Health Care Planning Process Guidelines. Government of British Columbia: Victoria, BC; 1997.
  8. Ministry for Children and Families & Ministry of Health. Health Services for Community Living: Client Health Care Planning Process Guidelines. Government of British Columbia: Victoria, BC; 1997.
  9. Ministry for Children and Families. Guidelines for Anticipatory Health Care Planning and Consent to Health Care. Government of British Columbia; Victoria, BC; 2000.
  10. Ministry of Health. In-hospital Support Guidelines. Government of British Columbia: Victoria, BC: 2003.
  11. Ministry for Children and Families. A Field Guide on Death and Dying. Government of British Columbia: Victoria, BC; 2000
  12. Assigning and Delegating to Unregulated Care Providers. Vancouver: Registered Nurses Association of British Columbia; 2002 [cited: 2005 Apr 11]. Available from: www.rnabc.bc.ca/pdf/98.pdf.
  13. Code of Ethics for Registered Nurses. Ottawa :Canadian Nurses Association; 2002 [cited 2005 Apr 11]. Available from: www.cna-nurses.ca/cna/documents/pdf/publications/CodeofEthics2002_e.pdf
  14. Ministry of Children and Family Development. The Community Living Authority Act. Government of British Columbia: Victoria, BC; 2004 [cited 2005 May 25]. Available from: www.legis.gov.bc.ca/37th5th/3rd_read/gov45-3.htm
  15. Crawford M. Gathering Momentum: Mobilizing to Transform Community Living in BC. Roeher Institute; 2004 [cited 2005 May 25]. Available from: www.communitylivingbc.ca/pdfs/ia_final_report_r.pdf
  16. Ministry of Children and Family Development. Transforming Community Living Services in BC. Government of British Columbia: Victoria, BC; 2005 [cited 2005 May 25]. Available from: www.communitylivingbc.ca/pdfs/transforming_cls_jan05v2.pdf
  17. Physician Workforce in Canada: Literature and Gap Analysis. Ottawa: Canadian Labour and Business Center; 2003 [cited 2005 Apr 11]. Available from: www.physicianhr.ca/reports/literatureReviewGapAnalysis-e.pdf.
  18. Prasher VP, Janicki MP, editors. Physical Health of Adults with Intellectual Disabilities. Oxford: Blackwell Publishing; 2002.
  19. McCallion P. Aging and Alzheimer’s disease among persons with Developmental Disabilities. National Association for the Dually Diagnosed; 2004.
  20. Nehring WM. “Directions for the Future of Intellectual and Developmental Disabilities as a Nursing Specialty.” International Journal of Nursing in Intellectual and Developmental Disabilities; 2004 [cited 2004 Apr 19].
  21. Leonard B. “Community Empowerment and Healing.” In: Anderson ET, McFarlane J, editors. Community as Partner: Theory and Practice in Nursing. 3rd ed. Philadelphia: Lippincott; 2000.
  22. Broda T. “Services for Persons with Intellectual and Developmental Disabilities in Montreal: A Nurses’ Perspective.” International Journal of Nursing in Intellectual and Developmental Disabilities; 2004 [cited 2004 Apr 19].
  23. Ministry of Social Services and Housing & Ministry of Health. Planning for the Future: A Proposal for Services for People with Mental Handicaps. Government of British Columbia: Victoria, BC; 1991.
  24. Gibson P. From the Inside/OUT: Video Discussion Guide. British Columbia Association for Community Living: Vancouver, BC; 20.


Louise Le Cavalier, RN, BSN, MN joined British Columbia ‘s Health Services for Community Living (HSCL) program in 1993 as a Nurse Consultant. She has demonstrated leadership and a passionate interest in the field of intellectual and developmental disabilities since 1976 as a new graduate working with individuals with I/DD at Woodlands. She has actively participated in the HSCL program development and has played key roles in assisting with various provincial initiatives and projects. She obtained her college diploma in Nursing from John Abbott College in Montreal (Quebec) in 1975, her BSN from the University of British Columbia in 1995 and recently her MN from the University of Athabasca (Alberta) in Canada. Louise has extensive clinical experience in acute care, critical care and community health sectors. She is a long-time member of CNA, RNABC, AAMR Nursing Division and DDNA.



Louise Le Cavalier, RN, BSN, MN
1165 Vidal St.
White Rock, BC
V3B 3T4
Tel: (H) 604-535-6849 (W) 604-918-7422
Fax: 604-918-7631
E-mail: [email protected]

Functional Caregiving: A New Construct for Mother’s Caregiving to Adult Children with Intellectual Disabilities

Shu-Pi C. Chen, DrPH, RN; Sheila Ryan-Henry, ACSW; Nikolaus Bezruczko, PhD



Researchers currently lack a sound theoretical base for studying mothers’ caregiving of adult children with intellectual disabilities. Functional Caregiving is a new construct proposed to describe a three-level task hierarchy of mothers’ caregiving tasks. Preliminary results with the Rasch measurement model provide empirical support for this Functional Caregiving construct. A theoretical perspective on mothers of children with intellectual disabilities based on Functional Caregiving would meet needs not currently addressed by the Person-Centered Planning philosophy of caregiving. Implications are discussed for clinical practice, nursing-based caregiver research, and caregiving by other care providers.



Intellectual disabilities, also known as mental retardation, occur in families across socio-economic levels and racial/ethnic groups1, 2. In this population, families are the major source of support and protection for individuals with intellectual disabilities3, 4. Although family members share caregiving responsibilities, biological mothers are usually the primary caregivers and often assume these responsibilities for many decades5, 6. Caregiver research has focused on family stress and burden, as well as on a wide range of topics, such as strategies and outcomes of caregiving, role relationships of family members, and culture differences in caregiving7, 8. However, the literature is sparse relative to mothers’ caregiving behaviors for their disabled adult children. This article addresses the lack of a theoretical basis for describing mothers’ caregiving of their adult children with intellectual disabilities. A theoretical base, if developed, would have broad applications and would be especially useful as a reference guide to tailor care for individual clients.


The Need

Nurses and other members of the multidisciplinary team working with individuals with disabilities use the Person-Centered Planning (PCP) approach to guide their practices. PCP, a theory currently used by health and human services agencies, is a long accepted ideal for providing effective services and support to individuals with intellectual disabilities9. PCP philosophy puts the intellectually disabled individual at the center of several concentric circles of support. The circles surrounding the individual with disabilities are defined by persons and/or systems most important to and needed by the individual to function well and to grow successfully9. The individual with a disability is within the first circle. The circle immediately surrounding the individual is occupied by the primary caregiver. Other family members may occupy this circle as well, depending on their level of direct caregiving. The next circle is comprised of the professionals, including direct care and non-direct care staff, who provide varying degrees of services and support. The services and supports provided are designed to help meet the needs of individuals in group living situations, as well as the needs of those who remain in their own homes. The two next circles, fanning outward respectively, include the local community and the wider world community. Members of each concentric circle circumscribe and support the central mother-child dyad. Empirical investigations have found support for a general PCP model. For example, Bezruczko10 found a model such as PCP that described competency development among socioeconomically disadvantaged children receiving support services in Child-Parent Centers, which suggests that PCP may offer fundamental benefits to effective psychosocial interventions in general.


Preliminary Exploration and Results

Rehabilitation research has successfully implemented objective measurement methods to develop a variety of functional assessment scales. Granger and associates11 reviewed primary functional assessment instruments and emphasized their importance for over 70 percent of persons receiving Medicare annually. Instruments such as FIMsm (Functional Independence Measure) to measure functional independence12, ADL to measure activities of daily living13, and SF-36 to measure physical and mental health components14, 15 are now the psychometric foundations for effective rehabilitation assessment.. Several prominent properties of these scales include persons and items on a common hierarchy, a uniform metric, and separable model parameters that establish sample-free measures essential for measuring human performance on a linear scale16. Inspired by these advances in rehabilitation research and guided by the PCP model, Chen17 and colleagues proposed a single, broad, overarching, construct – Functional Caregiving – that adapts methodological advances in rehabilitation assessment to caregiving assessment. Chen17 implemented this construct with 61 survey items and presented them to mothers of intellectually disabled children. The items asked each mother to rate her confidence in performing various caregiving behaviors for her adult child with intellectual disabilities, and included issues such the mother’s confidence in serving as the child’s legal guardian, arranging the child’s leisure activities, and assisting the child with finding a job. Responses from 108 mothers were analyzed with the Rasch model for rating scales16, 18, a measurement model that transforms raw scores, sometimes called total scores, into linear measures on an equal interval scale. An important feature of this analysis is that mothers and items are represented on a scale map that ranges from less effective to more effective caregiving. This map is very useful because mathematical estimation of items on the map transcends any particular data sample. This means that the item hierarchy will reoccur with any sample of mothers with intellectually disabled adult children. When Chen17 applied this methodology to empirical data, preliminary analyses showed that “items and persons define a common variable and the item hierarchy confirms a three-category structure”(p. 19). Figure 1 (at end of this article) presents results from that investigation. More effective versus less effective caregiving in this Functional Caregiving construct reflects a mother’s ability to handle the dynamics of her knowledge, skills, and personal resources to achieve her caregiving goals in the caregiving environment. As shown in Figure 1, at the lowest level of caregiving, mothers use advocacy knowledge to represent the needs of their adult children with disabilities. For example, the mother represents her eligible disabled child as payee for governmental resources. At a second, higher level of caregiving, mothers use their knowledge and resources, including physical energy, to perform personal caregiving tasks for their children with disabilities. These tasks include feeding, grooming, clothing, and so on. At the third level of caregiving, mothers use communication and political skills to seek support from community agencies to enhance their children’s community participation. For example, mothers may use these skills to ensure that their children attend school or are included in social/recreational activities. In this overarching construct, the mother as primary caregiver is a representative, a personal caregiver, and a community liaison for her intellectually disabled child.

The underlying theme for this hierarchical structure of three caregiving levels is the capacity of a mother to integrate knowledge, skills, and personal resources when performing caregiving tasks for her adult child with disabilities in a caregiving environment. Knowledge refers to organized information ready for use. Skills are the mother’s techniques or strategies for administering caregiving tasks. Personal resources refer to the options available to the mother and family in the immediate surroundings. The caregiving environment refers to the physical and psychological surroundings of the mother at the point of the care delivery.


Proposed Empirical Model

Current family research focuses on a multidisciplinary approach to studying family functioning, but reveals little consensus about constructs central to family functioning7. Research from the life course perspective has unsuccessfully attempted to map construction of family giving19-21. Because tasks, functions, and norms all permeate the constructions of caregiving, there is no universally agreed upon definition of family caregiving19, p.344. In studying family support models, Grant and associates19 identified salient features of family caregiving. These are: (a) family caregiving has a purpose linked to the family life cycle22; (b) the family caregiver assists members to find a sense of identity in the face of difficulty20, 21; and (c) family caregivers continue to learn and provide care to meet members’ needs. In another study, parental caregivers were found competent to dispense available resources to their disabled children23. They were also able to differentiate levels of adequate time use and were instrumental resources for various caregiving tasks. In contrast, qualitative approaches to the study of family impact are building detailed and nuanced accounts firmly grounded in the experiences of the participants. These studies have an inherent flexibility to raise issues not addressed by current theories7. For example, Shearn and Todd24 use day-to-day activities to describe the parental work in caregiving for their adult children with learning disabilities.

In light of the current research and our clinical experiences, we propose an empirical model that describes the mother’s caregiving tasks to her adult child with intellectual disabilities. Assumptions are: (a) family caregiving occurs in the social context surrounding the mother and her family; (b) the mother’s caregiving is purposeful, with the intention to assist the adult child with disabilities to fulfill his or her basic human needs22, 25, 26; (c) the mother considers her personal, mental, social, and financial resources in her provision of care27; and (d) the mother selects the caregiving tasks that are functionally complimentary or supplementary to her child’s ability to take care of basic human needs20. The caregiving tasks are hypothesized to have a three-level hierarchy: advocacy, personal caregiving, and community relations. Advocacy requires the mother to use her knowledge in performing the caregiving tasks. Personal caregiving requires the mother to use her knowledge and resources, including physical energy. Community relations require the mother to use her skills to seek support from community resources that will enhance her child’s community participation. An underlying theme for the three levels of task hierarchy is the construct of Functional Caregiving.



Our clinical observation revealed that, in general, no one knows the details of caregiving for an adult child with intellectual disabilities better than the adult child’s mother does. The mother has learned, often by trial and error, how care is most effectively given, and what works and what does not work28. Through learning and inspiration, mothers form a pattern of caregiving behaviors that reflect their integration of knowledge, skills, and resources within their caregiving environment. In essence, this is the base for our theory development.

Functional Caregiving provides an objective context in which assessment of the mother’s capacity to care for her adult child is possible. It explicitly focuses on skills and knowledge that the mother uses in the provision of care. Potential contributions of the construct of Functional Caregiving rely on further studies. Through replication and verification, the knowledge it provides should have implications for delivery of services and caregiving research.

The proposed empirical model may be incorporated into PCP philosophy, especially as it relates to the circle of the mother-child dyad. The construct of Functional Caregiving assists the care providers to understand the contents and/or the process of the mother’s caregiving behaviors. In turn, the construct can serve as a reference for provision of care, such as case management. Care providers may also use the construct to plan enrichment activities for the mother, especially for caregiving behaviors in which the mother has less confidence. Nurses and other members of a multidisciplinary team will find the construct helpful in planning care for their clients. The construct of Functional Caregiving also provides a theoretical base for guiding clinical services. For example, within the mother-child dyad, nurses work to support the mother’s caregiving and build the mother’s caregiving skills to enhance her effectiveness in caring for the adult child. Further, the caregiving task hierarchy can be used to determine the need for transition of caregiving from the mother to other caregivers. As an example, the construct of Functional Caregiving can be used to determine the age at which, or the caregiving level at which, an aging mother should be relieved of caregiving responsibilities. On the other hand, with a relatively young mother, the construct may be used to determine the need for enhancement of caregiving skills. In addition, the quality of care provided to an individual should be culturally sensitive. The Functional Caregiving construct provides a means to achieve culturally sensitive care through established caregiving behaviors of the mother. Moreover, the task hierarchy identifies discontinuities in caregiving. To illustrate, a mother who becomes less capable of providing care may show regression on the caregiving task hierarchy. Collectively, the construct of Functional Caregiving provides aggregate data that may be used to monitor the quality of care provided by the caregivers of an agency (Figure 1).

Although mothers’ caregiving for individuals with disabilities often lasts a lifetime, primary care mothers, as a group, have not been recognized as being at risk for healthy living. Studies have shown that the aging process and declining health have made caregiving more difficult for aging mothers4, 6. The construct of Functional Caregiving will be helpful in identifying vulnerable mothers, and certainly aging mothers, of adult children with intellectual disabilities. The U.S. Department of Health and Human Services’ Office of Women’s Health has recognized special populations in their research agenda29. Aging women who are the primary caregivers of adults with intellectual disabilities need to be among those recognized. It is timely, indeed, to develop a theoretical base for mothers’ caregiving. This theoretical development, however, needs to be followed by efforts to formulate health policies that target the needs of these women.



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  29. U.S. Department of Health and Human Services. Women’s Health USA 2003. Rockville, Maryland: Maternal and Child Health Bureau, Health Resources and Services Administration, 2003.


Shu-Pi C. Chen, DrPH, RN, is a professor of public/community health nursing. Her research interest areas are theoretical base for the mothers’ caregiving to their adult children with intellectual disabilities and the effects of caregiving on mothers’ health.

Sheila Ryan-Henry, ACSW, has specialized in advocacy for individuals with intellectual disabilities and their families for over 25 years. Providing support and maintaining/returning empowerment to this group is her lifelong professional goal.

Nikolaus Bezruczko, PhD, is co-founder of Chicago Objective Measurement Table and on the board of directors of the Institute for Objective Measurement in Chicago. He works in measurement and evaluation consulting and is currently editing Rasch Measurement in Health Science.



Shu-Pi C. Chen
844 S. Laflin St.
Chicago, IL 60607
Tel: 312-733-1591
E-mail: [email protected]
Fax: 312-666-2531

Reprints will not be available from the authors.

A Life’s Crusade

Gao Ya Li



Giving birth to a child is a life-transforming event for a parent. While this may seem to be obvious, it is nevertheless one of the most significant changes that can occur. In this article, the author will describe how her life was changed upon the birth of her son with cerebral palsy. Living in Shanghai, the People’s Republic of China, she describes how she changed her entire life to provide services to her son, and subsequently, to many other children with cerebral palsy and other disabilities.

Gao Ya Li describes her reaction to her son’s condition and her subsequent search for adequate community services for him. Her efforts lead her to research programs throughout China and Australia and to start her own program. She describes the difficulties she encountered and the people she met who assisted her in her desire to provide the best possible treatment for her son and other children with disabilities. Conductive education is the basis for the school’s services and her quest to develop that approach is described.

This is a deeply personal account of one woman’s crusade to help her own child. Through that need, she has established a school in Shanghai that has served over 300 children and their families. The Shanghai Bo Ai Children’s Rehabilitation Center now provides on-going rehabilitation to over 60 children and families daily and enables these children to receive the early intervention needed to make a critical difference. The article serves as an educational and inspirational message to parents and professionals regarding what can be done in the People’s Republic of China.



In the midst of the fast-paced throb of the burgeoning metropolis of Shanghai there exists on a quiet little alleyway a school for children with special needs that is known throughout the whole city. All children who come to this school are children with cerebral palsy. They are unable to walk, sit or even crawl. Their limbs are often rigid and they have different problems to overcome.

We have an endless flow of visitors to our school. Every time they see the children struggling to crawl along the ground, or to see the staff gently encouraging the children to move their tiny feet ahead just one tiny inch at a time, they ask with amazement “How did you end up doing this kind of work? Why are you doing this kind of work?!” What should be understood is that in 1996 our school was the first and only private centre in Shanghai specializing in the treatment of children with cerebral palsy. At that time Chinese society was totally ignorant about rehabilitation, about children with cerebral palsy. With questions like those above constantly being asked I often think back to the summer of 1990…

In 1990 I worked for a Chinese import/export corporation. This was considered a very good job at the time. However, something completely unexpected was about to throw my life and my career into turmoil. In the summer of 1990 I gave birth to my son. Like any other mother I was filled with joy and excitement. However, I was completely unaware of the tragedy that was awaiting me. When at seven months of age my son was unable to crawl or sit, he was diagnosed with cerebral palsy – I was shattered. I felt empty and the pain was so intense that it numbed my heart. My hopes and aspirations for my child all vanished. There only remained a sense of hopelessness and pain. It was only after a long period of introspection that I decided to do everything that I possibly could to save my child from a bleak future and to do everything in my power to minimize his disabilities. It was at this time that I began my long journey into uncharted waters. I went to nearly every hospital in Shanghai. With only very minor results I was forced to look elsewhere for medical treatment. All in all I spent around 4 years traveling around China to places like Changchun, Beijing, Nanjing, Wuhan and Shijiazhuang. I covered nearly half of China.

As time slipped away I needed to return to work. I came up with a plan: during the day I could put my son into a kindergarten while I went to work. In the evenings after work I could help him exercise. Although I tried, this plan did not work and I once again lost hope. Coincidentally, I learned from a neighbor that there was a woman at their factory who had a child with cerebral palsy and that no place would accept the child. Every day the woman would have to take her child to work with her. She had to be with him constantly as he grew up. Once again I was shocked. Having spent several years desperately trying to find a solution for my son’s condition I had gained a relative understanding of the chronic condition of cerebral palsy. For many years now researchers have been working hard to try to find out how to help this special group of children and their families. Children with cerebral palsy are like all other children in that they need encouragement and stimulation right from birth. Early intervention can minimize the contractures and bad posture that these children can develop and can accelerate speech and intellectual development so that they are more likely to reach their full potential. Therefore childhood is the key time to implement various programs such as speech therapy, occupational therapy, physical therapy and education.

At present, we face the following challenges:

  1. Our rehabilitation center as well as general standards is unable to adequately fulfill the varying needs of these children.
  2. Rehabilitation for children with cerebral palsy is always short-term and not continuous as there must be a family member or person who can be dedicated full-time to the care of the child. For example, they are needed for rehabilitation centre or hospital visits.
  3. There are very few kindergartens that accept children with physical disabilities. After treatment at a hospital or rehabilitation centre, most children with cerebral palsy have to stay at home to be cared for by their grandparents or a nanny. (Of course, such people are not skilled or experienced in caring for children with cerebral palsy.) Because of such limitations, children with cerebral palsy lose their best opportunity for rehabilitation.

Enabling children with cerebral palsy to live in special needs residential schools would greatly assist in implementing early intervention programs which would create a solid foundation for their physical, intellectual and language development as well as preventing or minimizing any psychological problems they might have. The idea of establishing such a special needs school gradually took shape in my mind.

As I was beginning to make plans for a special needs school I learned from a friend that the World Health Organization (WHO) Hong Kong Rehabilitation Organization and the Chinese Administrative Affairs Bureau was going to hold the first National “Children’s Rehabilitation Training Workshop” in Hebei Province. Self-funded, I immediately left to attend this workshop. There I met a Canadian occupational therapist and an Irish instructor and child welfare workers from all parts of China. I was able to borrow some videotapes from these professionals. It was from these tapes that I first gained a basic understanding of conductive education. Through these tapes I was able to observe the experience of several decades of conductive education programs for children with cerebral palsy in Europe and Hong Kong. With the skills I also had attained from my several years of visiting rehabilitation centers around China, I was able to form my own concept of a rehabilitation centre. I was slowly gaining confidence.

In May 1995 I began to realize my dream. I used more than RMB30,000 of my own savings and borrowed more than that from close friends in order to rent a small, disused, centrally-located two-story building. I spent two months renovating. Just as the renovations were being finished, the landlord advised me that he had to rent the building to several large companies instead! When I heard this news I was devastated. Fortunately the landlord was a good person. He understood my situation completely. He not only compensated me in total, he even charged me a lower rent on the building in which the centre is now located. I am unable to describe how grateful I was because not only is the current location bigger, it is also more suited to the children’s needs. What looked like a bleak situation turned out very well indeed. The place is larger and the compensation money was able to be used as start-up capital for the centre.

I went through many different avenues to find two nurses, a doctor, a teacher and several laid-off workers. Altogether I had seven staff members and they underwent a brief training program. On 1 April 1996 I obtained a government license for the centre and thus the Bo’ai Children’s Rehabilitation Centre was officially established.

After establishing the centre I faced the largest problems yet which were: finding skilled workers; a lack of professional expertise; funding; a lack of community understanding. I had to blindly feel my way through these significant obstacles. At that time physiotherapy, occupational therapy, speech therapy and those kinds of disciplines were not offered at Chinese universities. There really was no expertise in relation to rehabilitation. In addition, hospitals had no neurologists or neurosurgeons and very few people skilled in physical rehabilitation. In addition, there was no in depth research into child psychology, children’s education, physical rehabilitation, music therapy, etc.

Through reading Chinese and foreign material on child rehabilitation, using the knowledge I had gained at the workshop in Hebei, viewing the foreign instructional videos I’d been given and using the wealth of experience of Chinese provincial-level rehabilitation centers, I gradually developed a training plan for our rehabilitation centre. As we were the first private cerebral palsy centre in Shanghai, numerous newspapers and TV stations came to report on our centre. The Shanghai government and citizens, as well as many foreign friends, provided us with different kinds of help. A foreign lawyer working in Shanghai read about our story in a local newspaper and introduced his mother to us, a physiotherapist with more than forty years’ experience treating children with cerebral palsy – who was visiting Shanghai at that time. Not long afterwards he funded me on a trip to study cerebral palsy centres in Melbourne, Australia. In beautiful Australia I visited close to ten special needs centers and schools for children, as well as a workshop for adults with cerebral palsy. I was able to observe modern rehabilitation facilities; learn about the latest theories in relation to children with disabilities; witness the community support for, and technological advances in, this area; and how successful the result of all this was. When I passed through Hong Kong on the way back to Shanghai I had arranged with the WHO Hong Kong Rehabilitation Organization to visit many special needs schools and rehabilitation centres in Hong Kong. The opportunity to observe cerebral palsy centres overseas made me see the significant gap between where we were and where other countries were. I also realized the great responsibility that I had and the difficult road that lay ahead. I was inspired to work hard to match, if not exceed, what others had done in this area.

Everything good in this world is the result of human wisdom and diligence. Moreover, in the end, humanity needs to resolve its own problems. The best way is for individuals to take initiative of their own destiny and challenges.

I brought back with me new concepts and threw myself into working hard and furiously.

There have been rapid changes in Shanghai during the past few years. There has also been a lot of progress in the area of child rehabilitation. There has been a gradual but significantly greater understanding of cerebral palsy in the general population and a greater understanding of the need for special needs organizations. Beginning in an environment of ignorance we have enabled people to accept, and moreover to help, children with cerebral palsy. A few kindergartens and schools have now established classes for children with special needs and there are now special needs schools that have classes for children with cerebral palsy. The Children’s Hospital has also established a Rehabilitation Department and doctors are accepting physical rehabilitation theories; are in the process of implementing rehabilitation skills in relation to children with disabilities; there is increasing acceptance of educational theories; and, my centre’s work is also slowly gaining society’s acceptance. During the last six years around 300 children have received treatment and education at my centre. Among them, 40 children are now able to walk and therefore are able to attend supporting kindergartens and primary schools. The eldest child at my centre has already been accepted into a middle school. Every time I see a child, who had had to be carried into the centre, now stand up or walk independently, or see a magnificent smile on the face of a child at my centre, or see the sparkling tears of joy in a parent’s eyes, this is my greatest joy. It is at these times that I know that it was all worth it.

Even though we have made the first steps in the area of rehabilitating children with disabilities and have attracted special attention from the community, it has been extremely difficult for a private centre such as ours to develop. It has been difficult because of the fact that China is a developing country; the level of the entire social welfare system in China is still not high; and the treatment of children with cerebral palsy has only just begun. There are many gaps in knowledge to be filled. We need to consolidate what we know, we need funding, we need specialist staff and we need community awareness and acceptance.

Through my efforts for children with cerebral palsy I have lost my former job and my marriage. However, there are many things for which I am grateful: Bo’ai Children’s Rehabilitation Centre has helped so many children and their families; the centre is dedicated to helping these children; I know that it has been much better to have a centre like this than not; and the success of Bo’ai will mean that other such centres like this will be established. Right now in Shanghai other centres like mine are being established. Future generations of children with cerebral palsy will certainly be more fortunate than my son was.

I often think that a person’s life is so temporary, fragile and insignificant. If a person is able in their life’s journey to bring benefit to others, or to benefit society in some way, then their life can be fulfilling and powerful, worthwhile and blessed. I am determined to continue my work for the cause of children with disabilities.


Gao Ya Li (Julie) is the Executive Director of the Shanghai Bo Ai Children’s Rehabilitation Centre, a facility providing residential and family support services for children with cerebral palsy in Shanghai, China. Serving over sixty children and their families, she established the centre after the birth of her son, who was born with cerebral palsy. Prior to her work with the Centre, she worked as an import-export specialist for a corporation in China. Her desire to establish a community program for children with cerebral palsy meant traveling over half of China and meeting with experts from other countries. She has overcome many obstacles to establish her services, today a thriving center of progressive programs for children with cerebral palsy.

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