Disability Policy

Disability as a public health issue: findings and reflections from the Massachusetts survey of secondary conditions.

Wilber N, Mitra M, Walker DK, Allen D, Meyers AR, Tupper P. Massachusetts Department of Public Health, Boston University, USA. nancy.wilber@state.ma.us Milbank Q 2002;80(2):393-421

Public health researchers and practitioners have begun to recognize the dynamic nature of disability, promote the health of people with disabilities, and develop strategies to prevent secondary conditions among them. To understand the epidemiology of secondary conditions, the authors developed the Massachusetts Survey of Secondary Conditions, a longitudinal study of adults with major disabilities (n = 656) based on a conceptual framework linking disability, mediating factors, and health outcomes. This paper reports baseline data on the number of secondary conditions experienced by survey respondents. Respondents experienced a mean of 5.3 of 17 secondary conditions. More numerous secondary conditions were associated with fair or poor general health and number of days unable to do routine activities. Factors amenable to public health interventions included difficulty with weight and exercise maintenance, tobacco and marijuana use, and experiencing assault. Disability should be a focus in all public health research, policy, and programs.

Passage of policy statement on the high risk of blindness, lower-extremity amputations, and oral health consequences in minority populations due to diabetes.

Robbins JM, Holland P. Veterans Health Affairs Headquarters, Podiatry Service, Louis Stokes Cleveland Department of Veterans Affairs Medical Center, OH, USA. J Am Podiatr Med Assoc 2001 Jun;91(6):313-5

The Surgeon General's Report and special-needs patients: a framework for action for children and their caregivers.

Slavkin HC. Office of the Dean, Room 203, School of Dentistry, University of Southern California, 925 West 34th Street, Los Angeles, CA 90089-0641, USA. slavkin@hsc.usc.edu Spec Care Dentist 2001 May-Jun;21(3):88-94

The Surgeon General’s Report, Oral Health in America, is the first comprehensive assessment of oral, dental, and craniofacial health in the history of our nation. The intent of this first-ever Report is to alert Americans to the full meaning of oral health and its importance to general health and well-being across the lifespan. Moreover, the Report has been released at a time in human history of enormous changes as well as opportunities. The convergence of public health policies, “quality of life” expectations, global informatics, a new century of biotechnology, the completion of the Human Genome Project, changes in the management of health care, and the acknowledgment of enormous health disparities herald a call to action. These profound dynamics particularly affect children and their caregivers and the multitude of social, economic, and health issues associated with special patients and developmental disabilities. This paper will highlight the issues, provide recommendations, and suggest a call to action.

Distribution of services and supports for people with traumatic brain injury in rural and urban Missouri.

Johnstone B, Nossaman LD, Schopp LH, Holmquist L, Rupright SJ. Department of Health Psychology, MU School of Health Professions, Columbia, MO 65212, USA. johnstoneg@health.missouri.edu J Rural Health 2002 Winter;18(1):109-17

New paradigms of disability suggest that many variables interact to influence the community functioning of people with traumatic brain injury (TBI), including injury severity and social, psychological, and environmental factors. Unfortunately, the majority of TBI outcome research to date has primarily focused on injury severity variables (e.g., neuroradiologic findings, loss of consciousness, posttraumatic amnesia) to the exclusion of environmental variables. Limited environmental resources such as rehabilitation professionals, facilities, and services may be significant barriers that affect outcome for people with TBI, particularly for those in rural areas. Using data from Missouri, where 32% of the population lives in rural counties, this study researched the availability of rehabilitation resources for individuals with TBI, with an emphasis on differences between rural and urban areas. Data indicated that there is a scarcity of rehabilitation professionals (i.e., physiatrists, mental health providers, rehabilitation therapists),facilities (i.e., hospitals offering comprehensive rehabilitation therapies), and services (i.e., support groups) in rural areas of the study state. The results suggest that (1) future rehabilitation researchers need to evaluate the impact of accessibility to rehabilitation services and resources on the outcome of people with TBI and (2) TBI health policy administrators need to consider how to increase rehabilitation resources for people with TBI in rural areas, including the use of rural-based training programs, rural debt-forgiveness training programs, and telehealth systems.

Changing the chronic care system to meet people's needs.

Anderson G, Knickman JR. Johns Hopkins Bloomberg School of Public Health, Baltimore, USA. Health Aff (Millwood) 2001 Nov-Dec;20(6):146-60
Comment in: Health Aff (Millwood). 2002 Jan-Feb;21(1):272. Health Aff (Millwood). 2002 Jan-Feb;21(1):273-4.

Persons who are likely to be the heaviest users of medical and supportive care services—those with chronic illnesses, disabilities, and functional limitations—are often forced to navigate a system that requires them to perform most of the coordination functions themselves and is generally not organized around their needs. In 1996 an estimated 128 million Americans had at least one of these three conditions, and 9.5 million had all three. This paper examines the current programs designed to assist these persons and suggests changes in eligibility rules, coverage policies, and educational programs to provide a system more oriented to people’s chronic care needs.

Consumer and surrogate preferences for a cash option versus traditional services: Florida adults with developmental disabilities.

Simon-Rusinowitz L, Mahoney KJ, Shoop DM, Desmond SM, Squillace MR, Sowers JA. University of Maryland Center on Aging, HHP Building, College Park, MD 20742, USA. Ment Retard 2001 Apr;39(2):87-103

As long-term service expenditures have risen, policymakers have sought ways to control costs while maintaining consumer satisfaction. Concurrently, there is increasing interest in the disability community in consumer direction. The Cash and Counseling Demonstration and Evaluation (CCDE) seeks to increase consumer direction and control costs by offering a cash allowance and information services to persons with disabilities, enabling them to purchase needed assistance. Because the disability community is composed of diverse subgroups, needs of these consumer communities must be assessed individually. Results from a telephone survey conducted to assess the interest in a cash option for Florida adults with developmental disabilities is presented, the three-state CCDE described, how survey findings can inform consumer information efforts discussed, and policy issues highlighted.

Protection of human subjects with disability: guidelines for research.

Stineman MG, Musick DW. Department of Rehabilitation Medicine, University of Pennsylvania Health System, Philadelphia, PA, USA. mstineman@mail.med.upenn.edu Arch Phys Med Rehabil 2001 Dec;82(12 Suppl 2):S9-14

Typically, protection of human subjects is a shared responsibility involving the local institutional review board (IRB) and the clinical investigator, guided by federal and state law as well as local organizational policy. The IRB screens protocols to ensure subjects’ safety by making sure that risks are acceptable and do not outweigh benefits. However, the recruitment of subjects, as well as obtaining consent, is the principal investigator’s responsibility. Through the process of informed consent, the clinical investigator is obliged to ensure that each subject understands all treatments proposed and their potential benefits and risks. Achieving truly informed consent from people with major developmental, physical, sensory, communicative, or cognitive disabilities may be particularly difficult. Spurred on by increasing research of relevance to rehabilitation medicine and the patients served, we review legal, ethical, and moral issues surrounding the processes of obtaining informed consent and offer specific recommendations for protecting people with disabilities. Copyright 2001 by the American Congress of Rehabilitation Medicine

Community-based persons with mental retardation: opportunities for health promotion.

Ridenour N, Norton D. Graduate Nursing Program, Texas Tech University Health Sciences Center School of Nursing, Lubbock 79430, USA. Nurse Pract Forum 1997 Jun;8(2):45-9

The public policy of supporting the mentally retarded in community-based, group home environments provides an exciting opportunity for nurses to develop health promotion and self-care programs to increase the independent living capacity of this population. This article discusses the issues raised and solutions developed by nurse practitioners working with adults with serious medical problems and diminished cognitive capacity.

Improving the oral hygiene of institutionalized mentally retarded clients.

Lange B, Cook C, Dunning D, Froeschle ML, Kent D. Department of Dental Practice Management, University of Nebraska Medical Center College of Dentistry, Lincoln, Nebraska, USA. J Dent Hyg 2000 Summer;74(3):205-9

Purpose: The quality of oral health care of persons with mental retardation has been reported in the literature to be less than that of their normal peers. The purpose of this study, set in a Midwest institution for persons with developmental retardation, was to determine if a change in policy followed by staff training and monitored by an interested third party would improve the oral hygiene of clients living on wards. p. Methods: Methods used to train staff in proper toothbrushing were developed. Three living units were randomly selected for study: control, training plus accountability (experimental group I), and training without accountability (experimental group II). The direct care staff of both experimental groups were trained in proper toothbrushing techniques. Staff of the control group received no training. A dental hygienist visited the living unit periodically to evaluate and provide feedback on the plaque index scores taken by the caregivers in both experimental groups. p. Results: The plaque indexes of group I showed significant improvement over the control group and group II. p. Conclusion: The results of this pilot study support the other findings of higher plaque indexes for residents with mental retardation and that modifying toothbrushing policies and staff training are not as critical to the improvement of the clients’ oral hygiene as is the presence of an involved, interested third party.

Physical activity among persons with disabilities--a public health perspective.

Heath GW, Fentem PH. Division of Adult and Community Health, Centers for Disease Control and Prevention, Atlanta, Georgia, USA. Exerc Sport Sci Rev 1997;25:195-234

Regular physical activity, sports participation, and active recreation are essential behaviors for the prevention of disease, promotion of health, and maintenance of functional independence. This health behavior is essential for persons with and without disabilities. Population-based surveys have consistently demonstrated that persons with disabilities are less likely to be physically active, compared to persons without such limitations. However, these observations are based on relatively few surveys and are dependent on physical activity assessment methods that may not be sensitive and specific enough for persons with disabilities. Studies clearly demonstrate that many persons, representing a variety of selected disabilities, can adapt to increased levels of physical activity, as evidenced by alterations in various components of physical fitness. More importantly, other studies consistently provide evidence that participation in regular physical activity among persons with selected impairments and disabilities results in improved functional status and quality of life. Further efforts are critically needed in the area of the development of physical activity assessment methodology for persons with disabilities. Methods need to be developed that will provide survey researchers and those in public health the capacity to measure and monitor activity patterns of persons with disabilities. This information is important not only for public health officials but also health policy analysts, service providers, and disability advocacy groups. Further understanding of the role of physical activity in the maintenance of function and independence among persons with disabilities is needed. The understanding of environmental and social barriers to physical activity among persons with disabilities needs further exploration. Finally, physical activity determinants research among persons with disabilities, including the role of assistive technology as well as maximizing the intrinsic capacity of functional anatomy and physiology, needs to be addressed.

Position of the American Dietetic Association: nutrition in comprehensive program planning for persons with developmental disabilities.

J Am Diet Assoc 1997 Feb;97(2):189-93

Primary and secondary barriers to physically active healthy lifestyles for adults with learning disabilities.

Messent PR, Cooke CB, Long J. Department of Human Sciences and Medical Ethics, St Bartholomew’s and the Royal London School of Medicine and Dentistry, UK. Disabil Rehabil 1999 Sep;21(9):409-19

Purpose: Evidence shows that those with a learning disability are typically amongst the most inactive and sedentary members of the population, yet few studies have focused on the determinants of physical activity. The aim of the present study was to establish whether a group of 24 adults with mild and moderate learning disabilities receive adequate support to be able to make choices to lead a physically active lifestyle.|
p. Methods: A descriptive study was used based on interviews with 24 adults with learning disabilities (mean age of 34 years) triangulated by day time and residential care workers. Participants volunteered from two residential homes and one social education centre (SEC) in a city in the North of England.
p. Results: The participants face a set of primary barriers that prevent them from having a choice to adopt the Department of Health’s recommendations for physical activity. Identified barriers included: unclear policy guidelines in residential and day service provision together with resourcing, transport and staffing constraints; participant income and expenditure; and limited options for physically active community leisure.
p. Conclusion: These are barriers that are widely acknowledged and understood by day and residential staff and participants in the study, but are arguably poorly understood by policy makers, health promotion agencies, commissioners and providers of learning disability services. The current lack of resources and inadequately specified responsibilities associated with community care deny many people with learning disabilities real choices to live a physically active healthy lifestyle.

History, implementation, and current status of the National Spinal Cord Injury Database.

Stover SL, DeVivo MJ, Go BK. Department of Physical Medicine and Rehabilitation, University of Alabama at Birmingham, USA. Arch Phys Med Rehabil 1999 Nov;80(11):1365-71

Objective: To summarize a 25-year history of the Model Spinal Cord Injury Program and the coexistent National Spinal Cord Injury Database and provide the status of the Database with a discussion of the strengths and weaknesses.
p. Design: Inception cohort.
p. Setting: Model spinal cord injury systems throughout the United States.
p. Results: As of September 1998, the National Spinal Cord Injury Database included abbreviated registry records on 6,085 new patients, more complete initial injury and hospitalization records on 18,969 new patients, and 78,627 annual follow up records on those persons. Although stability and continuity of the Database has been a priority since it was started, some changes were needed to meet the changes in health care, health care policy, and new technology.
p. Conclusion: This large database can now provide a wealth of information about short- and long-term outcomes, provide data on which future health care policies can be evaluated, and act as a source for answers to future research questions.

Improved disability population estimates of functional limitation among American children aged 5-17.

Hogan DP, Msall ME, Rogers ML, Avery RC. Population Studies and Training Center, Brown University, Providence, Rhode Island 02912, USA. Dennis_Hogan@brown.edu Matern Child Health J 1997 Dec;1(4):203-16

Objective: This paper (a) creates and validates measures for population survey data to assess functional limitation in mobility, self-care, communication, and learning ability for school-age American children; (b) calculates rates of functional limitation using these measures, and provides population estimates of the number of children with limitations; and © examines these limitations as a function of socioeconomic factors.
p. Methods: The study is based on data for children aged 5-17 collected in the 1994 National Health Interview Survey on Disability. Ordinal values are assigned to survey items in the four functional areas and analyzed to produce scales of high reliability. These measures are used to identify within a 95% confidence interval the number of children with these limitations. Ordered logistic regression models measure the effects of functional limitations on disability and societal limitation. Socioeconomic differences are measured with an ordered logistic regression model that predicts severity and comorbidity.
p. Results: Limitations in learning ability (10.6%) and communication (5.5%) are the most common, with mobility (1.3%) and self-care (0.9%) occurring less often. Six percent of children have one serious functional limitation and 2.0% have two or more serious functional limitations. This corresponds to 4.0 million school-age American children with serious functional limitations. Functional limitation is strongly linked to socioeconomic disadvantage and to residence in single-mother households.
p. Conclusion: Future population research should use multiple-item scales for four distinct areas of functional limitation, and a summary that takes into account both severity and comorbidity. The improved estimates of the number of school-age children with functional limitation in this paper may help contribute to a more informed scientific and policy discussion of functional limitation and disability among American school-age children. Future research on the disability process among children must consider the role of socioeconomic disadvantage and family structure.

Issues surrounding age: vascular disease in the elderly.

Shepherd J. Institute of Biochemistry, Royal Infirmary, Glasgow, Scotland, UK. JShepherd@gri-biochem.org.uk Curr Opin Lipidol 2001 Dec;12(6):601-9

One-fifth of all humans who have survived beyond the age of 65 are alive today, and in the industrialized world the elderly segment of the population is expanding most rapidly. In biological terms, these survivors are healthier than the elderly of previous generations. However ‘there are no diseases peculiar to old age and very few from which it is exempt’ (Alfred Worcester, 1855-1951), and so society will inevitably accumulate a significant share of degenerative diseases within the ranks of its senior citizens. In the last two decades, the prevalence of stroke, diabetes mellitus, arthritis and heart disease has increased significantly as a tangible index of ageing in the population, and these diseases have been accompanied by degenerating cognitive function and physical disability, both of which are adding increasing stress to community healthcare and social services. Policy-makers need to understand and monitor these trends in order to make informed and cogent decisions about the management of this growing problem. This review highlights some of the key health issues facing the elderly in regard to coronary artery disease, insulin resistance, redox status, and statin therapy, in the hope that enlightened debate will inform decision making on resource allocation for this important and growing segment of society.

Metropolitan versus nonmetropolitan differences in functional status and self-care practice: findings from a national sample of community-dwelling older adults.

Rabiner DJ, Konrad TR, DeFriese GH, Kincade J, Bernard SL, Woomert A, Arcury T, Ory MG. National Center for Health Promotion, VA Medical Center, Durham, NC 27705, USA. J Rural Health 1997 Winter;13(1):14-28

The objective of this study was to use a recent national probability survey of the noninstitutionalized older adult population to compare the functional status and self-care practices of older adults residing in metropolitan and nonmetropolitan communities and to identify differences associated with residential location. The survey used in this study was the National Survey of Self-care and Aging (NSSCA). A cross-sectional design was employed using weighted bivariate and multivariate logistic regression analyses to examine the relationship between metropolitan and nonmetropolitan residential location and self-reported ability to perform basic, mobility, and instrumental activities of daily living (ADLs), as well as to assess the degree to which the levels and types of functional limitations affect metropolitan versus nonmetropolitan older adults’ performance of self-care activities. The bivariate logistic analyses pointed to modest, often insignificant metropolitan versus nonmetropolitan differences in the ability to perform functional tasks. However, larger positive effects of nonmetropolitan residence were generally observed once other factors likely to account for some of these differences were taken into account. Older adults from nonmetropolitan areas were more likely to report being able to perform functional activities but also were more likely to report performing self-care activities both in the presence and absence of disability. This study, therefore, concluded that nonmetropolitan older adults may discount the significance of declining functional status, thus normalizing the trajectory of aging in a different way than do their metropolitan counterparts. If this process occurs, it may affect how nonmetropolitan persons use primary health care and/or long-term care services, challenging the economists’ concept of demand, the clinicians’ concept of need, and the policy analysts’ concept of equity. Additional work is required to assess whether such a normalization process actually occurs and, if so, to explore its distribution, causes, correlates, and consequences.

Mortality and morbidity among older adults with intellectual disability: health services considerations.

Janicki MP, Dalton AJ, Henderson CM, Davidson PW. New York State Office of Mental Retardation and Developmental Disabilities, Staten Island, USA. mpjzj@aol.com Disabil Rehabil 1999 May-Jun;21(5-6):284-94

Purpose: Described is a study of the mortality and morbidity characteristics of 2752 adults with intellectual disability, age 40 and older, who died over a 10 year period in one American state.
p. Results: The main finding was that although individuals in the current generation of older adults with intellectual disability still generally die at an earlier age than do adults in the general population (average age at death: 66.1 years), many adults with intellectual disability live as long as their age peers in the general population. The results suggest that the longevity of adults with intellectual disability, whose aetiology is not attributable to organic causes, is progressively increasing. The results also confirm an increased longevity for adults with Down syndrome (average age at death: 55.8 years). Findings also showed that the causes of death for the study cohort were similar to those of the general older population, with cardiovascular, respiratory and neoplastic diseases among the most prominent causes of death.
p. Conclusion: It was proposed that clinical and prophylactic health practices could have significant social and health care consequences for delaying the onset or minimizing the occurrence of life threatening diseases (and thus prolonging life) in adults with intellectual disability. It was suggested that clinical practices could be implemented that deter the onset and lessen the impact and burden of older age-related diseases and secondary conditions and that greater attention needs to be given to training of health care professionals in the area of geriatric medicine and intellectual disability.

Prevalence of disabilities and associated health conditions among adults--United States, 1999.

MMWR Morb Mortal Wkly Rep 2001 Feb 23;50(7):120-5 Erratum in: MMWR Morb Mortal Wkly Rep 2001 Mar 2;50(8):149

In the United States, the number of persons reporting disabling conditions increased from 49 million during 1991-1992 to 54 million during 1994-1995. During 1996, direct medical costs for persons with disability were $260 billion. Surveillance of disability prevalence and associated health conditions is useful in setting policy, anticipating the service needs of health systems, assisting state programs, directing health promotion and disease prevention efforts, and monitoring national health objectives. The U.S. Bureau of the Census and CDC analyzed data from the Survey of Income and Program Participation (SIPP) to determine national prevalence estimates of adults with disabilities and associated health conditions. This report summarizes findings of that analysis, which indicate that disability continues to be an important public health problem, even among working adults, and arthritis or rheumatism, back or spine problems, and heart trouble/hardening of the arteries remain the leading causes. Better health promotion and disease prevention may reduce the prevalence of disability-associated health conditions.

Regional assessment of elderly disability in the U.S.

Lin G. Centre on Aging, University of Victoria, BC, Canada. glin@uvic.ca Soc Sci Med 2000 Apr;50(7-8):1015-24

This study examines regional variation of elderly disability in the United States. Elderly disability measurements are derived from two newly available questions on mobility and self-care limitations in the 1990 census. Substantial regional differences in elderly disability rates exist, with a higher prevalence of disability in the Southeast. These differences persist after controlling for age and socioeconomic status (SES). The study findings suggest that some public health policy should be regionally formulated and some government actions should be devoted to reduce the excessive elderly disability in the South.

State-specific prevalence of disability among adults--11 states and the District of Columbia, 1998.

MMWR Morb Mortal Wkly Rep 2000 Aug 11;49(31):711-4

Disability is a large public health problem in the United States (1), affecting an estimated 54 million persons who report disabling conditions (2). One of the national health goals for 2010 is to eliminate health disparities among different segments of the population, including among persons with disabilities (3). Although the development and implementation of public health policy and services relating to disability would be aided by public health surveillance (4), the lack of a brief case definition of disability limits efforts to obtain state-level prevalence to define the magnitude of disability. To assess state-level prevalence based on uniform criteria, CDC analyzed data from the Disability Module of the 1998 Behavioral Risk Factor Surveillance System (BRFSS). This report summarizes the results of the analyses, which indicated an overall prevalence consistent with national surveys and demonstrated wide variation in disability prevalence in states.

The Missouri Disability Epidemiology and Health Project.

Andresen EM, Prince-Caldwell A, Akinci F, Brownson CA, Hagglund K, Jackson-Thompson J, Crocker R. Department of Community Health, Saint Louis University School of Public Health, MO 63108, USA. Am J Prev Med 1999 Apr;16(3 Suppl):63-71

Introduction: Estimates of disability in this country are as high as 20%. State health departments need to provide the core activities to deal with this public health problem including assessment, policy development, and assurance. A collaboration among academic institutions and the Missouri Department of Health (MDOH) is a model for providing this core.

Methods: A disability workgroup was established among bureaus of the MDOH and three universities. This group selected the disability domain of mobility impairments for initial work. Existing data from the Centers for Disease Control and Prevention’s (CDC) Behavioral Risk Factor Surveillance System (BRFSS) in Missouri and data from the 1990 Census were analyzed. Dissemination of the findings involved community and consumer participation via an advisory group and a public health-sponsored conference on disability. In addition, new data collection efforts are underway using the BRFSS. Education and training activities include both public health students and public health practitioners in learning the content and methodology associated with disability epidemiology.

Results: Data analyses have identified rural geographic areas of the State with high levels of disability and a trend of increasing work disability since 1993. A selected key condition, arthritis, has been confirmed as having a high prevalence (28%) in Missouri. These data also demonstrate that there is a strong risk of limitations associated with arthritis [adjusted odds ratio (OR) 3.57; 95% confidence intervals 3.0, 4.2]. These results will be applied to program planning.

Conclusion: The Missouri program is succeeding in providing both academic and public health practice partners with a productive experience that meets the needs of each.

Understanding disability in mental and general medical conditions.

Druss BG, Marcus SC, Rosenheck RA, Olfson M, Tanielian T, Pincus HA. benjamin.druss@yale.edu Am J Psychiatry 2000 Sep;157(9):1485-91

Objective: This study characterized the prevalence, characteristics, and impact of mental and general medical disabilities in the United States.

Methods: The 1994-1995 National Health Interview Survey of Disability was the largest disability survey ever conducted in the United States. A national sample was Screened for disability, defined as limitation or inability to participate in a major life activity. Analyses compared cohorts who attributed their disability to physical, mental, or combined conditions.

Results: Of 106,573 adults, 1.1% reported functional disability from mental conditions, 4.8% from general medical conditions, and 1.2% from combined mental and general medical conditions. Disabilities attributed to a mental condition were predominantly associated with social and cognitive difficulties, those attributed to general medical conditions with physical limitations, and combined disabilities with deficits spanning multiple domains. In multivariate models, comorbid medical and mental conditions were associated with a twofold increase in odds of unemployment and a two-thirds increase in odds of support on disability payments compared to respondents with a single form of disability. More than half the nonworking disabled reported that economic, social, and job-based barriers contributed to their inability to work. One-fourth of working disabled people reported discrimination on the basis of their disability during the past 5 years.

Conclusion: An estimated three million Americans (one-third of disabled people) reported that a mental condition contributes to their disability. Mental, general medical, and combined conditions are associated with unique patterns of functional impairment. Social and economic factors and job discrimination may exacerbate the functional impairments resulting from clinical syndromes.

Injury prevention for children with disabilities.

Gaebler-Spira D, Thornton LS. Northwestern University, Feinberg School of Medicine, Pediatric Rehabilitation Program, Rehabilitation Institute of Chicago, Chicago, IL, USA. dgaebler@rehabchicago.org Phys Med Rehabil Clin N Am 2002 Nov;13(4):891-906

Little injury data exists for children who have disabilities. There is an urgent need to address injury prevention and to improve safety standards for this group. Understanding the epidemiology of injuries will allow clinicians to accurately advise patients and their families on individual risks and counsel them in steps to take to reduce those risks. Safety information must be tailored to consider each child’s functional impairments. All children who have disabilities are at risk for maltreatment. Open discussion of this problem is warranted given the immensity of the problem. Identifying parental concerns and supporting parents in the use of respite resources are appropriate. For children who have problems in mobility, falls are the number one concern. Collaboration with reliable vendors and therapists that adhere to standards for safe seating is essential for reducing the risk of wheelchair tips and falls. In addition, therapists should be directed to provide mobility training for activities from safe transfers to street crossing in a community setting. Parents should be counseled to approach their child’s injury risk based on the child’s cognitive and behavioral level rather than their chronological level. Knowledge of the child’s developmental quotient or intelligence quotient will also allow the clinician to accurately formulate an injury prevention plan. Many children will always need supervision for tasks that put them in situations of injury risk (i.e., swimming, street crossing, bathing). Sensorineural deficits such as blindness or deafness create significant alterations in negotiating the environment and an increased risk of injury. Awareness of the special needs for fire risk reduction and street safety are critical in this population. The collection of injury data is critical to define the scope of the problem and to influence changes in policy and the development of technical standards. Educational efforts focused on safety should include pediatricians, rehabilitative therapists, social workers, teachers, parents, and—most importantly—the empowerment of children as they age injury-free into adults.

Suggested Strategies: A national injury surveillance system for children who have disabilities should be developed to identify injury risk factors for children with disabilities. Children with disabilities should be monitored as a separate risk group in data collection regarding injuries. Parents should be aware of the cognitive level of their child and its influence on their injury risk. Crash testing on passenger restraints should include crash dummies whose physical characteristics resemble those of children who have disabilities. Families should have an emergency evacuation plan with specific consideration of their disabled child in the event of an emergency. Risk of burns to insensate skin and risks of thermal and friction trauma should be discussed when appropriate. The fire department and the police department should be notified of the presence of a child who has a disability in the home. Parents must be aware of the risk of falls to children who are mobile but cognitively impaired and to those in wheelchairs regardless of cognitive ability. Hospitals must have Child Protective Services teams with specific training in abuse to children with disabilities. Discussion of maltreatment risk should be addressed during routine office visits and appropriate resources should be made available to provide support to families. Educational programs should be developed to alert providers to the risks of abuse of children who have disabilities.

Prevention and management of urinary tract infections in paralyzed persons.

Evid Rep Technol Assess (Summ) 1999 Jan;(6):1-3