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Addressing Health Disparities Through Promoting Equity for Individuals with Intellectual Disability

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Abstract

Intellectual disabilities (ID) are conditions originating before the age of 18 that result in significant limitations in intellectual functioning and conceptual, social and practical adaptive skills. IDs affect 1 to 3% of the population. Persons with ID are more likely to have physical disabilities, mental health problems, hearing impairments, vision impairments and communication disorders. These co-existing disabilities, combined with the limitations in intellectual functioning and in adaptive behaviours, make this group of Canadians particularly vulnerable to health disparities. The purpose of this synthesis article is to explore potential contributory factors to health vulnerabilities faced by persons with ID, reveal the extent and nature of health disparities in this population, and examine initiatives to address such differences. The review indicates that persons with ID fare worse than the general population on a number of key health indicators. The factors leading to vulnerability are numerous and complex. They include the way society has viewed ID, the etiology of ID, health damaging behaviours, exposure to unhealthy environments, health-related mobility and inadequate access to essential health and other basic services. For persons with ID there are important disparities in access to care that are difficult to disentangle from discriminatory values and practice. Policy-makers in the United States, England and Scotland have recently begun to address these issues. It is recommended that a clear vision for health policy and strategies be created to address health disparities faced by persons with ID in Canada.

Résumé

Les déficiences intellectuelles (DI) sont des affections qui apparaissent avant l’âge de 18 ans et dont la conséquence est une limitation significative du fonctionnement intellectuel ainsi que des capacités conceptuelles, sociales et d’adaptation. Les DI touchent entre 1 et 3 % de la population. Les personnes atteintes présentent généralement des déficiences physiques, des problèmes de santé mentale, des troubles de l’audition ou de la vue, et des problèmes de communication. Ces incapacités concomitantes, combinées aux limitations du fonctionnement intellectuel et du comportement adaptatif, rendent ce groupe d’individus particulièrement vulnérable à des disparités sur le plan de la santé. Le but de cet article de synthèse était d’examiner les facteurs qui contribuent éventuellement à rendre vulnérables sur le plan de la santé les individus atteints de DI, de préciser l’ampleur et la nature des disparités auxquelles est en butte cette population et d’analyser les initiatives qui permettraient de s’attaquer à ces différences. Selon cette revue, les personnes atteintes de DI s’en tirent moins bien que la population en général sous l’angle de certains indicateurs clés de la santé. Parmi les facteurs de vulnérabilité, nombreux et complexes, mentionnons l’attitude de la société devant les DI, l’étiologie de ces déficiences, les comportements dommageables sur le plan de la santé, l’exposition à des environnements malsains, les problèmes médicaux de mobilité, et l’accès inadéquat aux services essentiels de santé et autres services de base. Dans le cas des personnes atteintes de DI, on note d’importantes disparités quant à l’accès aux soins de santé, disparités qu’il est difficile de distinguer des valeurs et des pratiques discriminatoires. Aux États-Unis, en Angleterre et en Écosse, les décideurs ont récemment commencé à se pencher sur ces questions. On recommande de se doter d’une vision claire en matière de politique et de stratégies sur le plan de la santé afin de s’attaquer aux disparités que subissent les personnes atteintes de DI au Canada.

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References

  1. U.S. Department of Health and Human Services. Closing the Gap: A National Blueprint for Improving the Health of Individuals with Mental Retardation. The Report of the Surgeon General’ Conference on Health Disparities and Mental Retardation. Washington, DC, 2002.

    Google Scholar 

  2. Luckasson R, Borthwick-Duffy SA, Buntix WHE, Coulter DL, Craig EM, Reeve A, et al. Mental Retardation: Definition, Classification, and Systems of Supports, 10th Ed. Washington, DC: American Association on Mental Retardation, 2002.

    Google Scholar 

  3. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders [text revision]. Washington, DC, 2000.

    Google Scholar 

  4. World Health Organization. International Classification of Functioning Disability, and Health. Geneva, Switzerland: World Health Organization, 2001.

    Google Scholar 

  5. Ouellette-Kuntz H, Paquette D. The prevalence of developmental disabilities in Ontario. Journal on Developmental Disabilities 2001;8(1):1–16.

    Google Scholar 

  6. Bradley E, Thompson A, Bryson S. Mental retardation in teenagers: Prevalence data from the Niagara Region, Ontario, Canada. Can J Psychiatry 2002;47:427–34.

    Google Scholar 

  7. Ministry of Health and Welfare Canada. The Epidemiology of Mental Retardation. Ottawa, Ontario, 1998.

    Google Scholar 

  8. McLaren J, Bryson SE. Review of recent epi-demiological studies of mental retardation: Prevalence, associated disorders, and etiology. Am J Ment Retard 1987;92:243–54.

    Google Scholar 

  9. Polder JJ, Meerding WJ, Bonneux L, van der Maas PJ. Health care costs of intellectual disability in the Netherlands: A cost-of-illness perspective. J Intellect Disabil Res 2002;46:168–78.

    Google Scholar 

  10. Whitehead M. The concepts and principles of equity and health. Int J Health Serv 1992;22:429–45.

    Google Scholar 

  11. Braveman P, Gruskin S. Defining equity in health. J Epidemiol Community Health 2003;57:254–58.

    Google Scholar 

  12. Ouellette-Kuntz H. Understanding health disparities and inequities faced by individuals with intellectual disabilities. Journal of Applied Research in Intellectual Disability. In press, 2005.

    Google Scholar 

  13. Bittles AH, Petterson BA, Sullivan SG, Hussain R, Glasson EJ, Montgomery PD. The influence of intellectual disability on life expectancy. Journal of Gerontology and Biological Science Medicine 2002;57:M470–72.

    Google Scholar 

  14. Janicki M, Dalton A, Henderson C, Davidson P. Mortality and morbidity among older adults with intellectual disability: Health services consideration. Disability and Rehabilitation 1999;21:284–94.

    Google Scholar 

  15. Hollins S, Attard MT, von Fraunhofer N, McGuigan S, Sedgwick P. Mortality in people with learning disability: Risks, causes, and death certification findings in London. Dev Med Child Neurol 1998;40:50–56.

    Google Scholar 

  16. Patja K, Livanainen M, Vesala H, Oksanen H, Ruoppila I. Life expectancy of people with intellectual disability: A 35-year follow-up study. J Intellect Disabil Res 2000;44:591–99.

    Google Scholar 

  17. Yang Q, Rasmussen SA, Friedman JM. Mortality associated with Down’s syndrome in the USA from 1983 to 1997: A population-based study. Lancet 2002;359:1019–25.

    Google Scholar 

  18. Eyman RK, Borthwick-Duffy SA, Call TL, White JF. Prediction of mortality in community and institutional settings. Journal of Mental Deficiency Research 1988;32:203–13.

    Google Scholar 

  19. Eyman RK, Grossman HJ, Chaney RH, Call TL. Life expectancy of profoundly handicapped people with mental retardation. N Engl J Med 1990;323:584–89.

    Google Scholar 

  20. Forsgren L, Edvinsson SO, Nystrom L, Blomquist H. Influence of epilepsy on mortality in mental retardation: An epidemiologic study. Epilepsia 1996;37:956–63.

    Google Scholar 

  21. Bongiorno FP. Dual diagnosis: Developmental disability complicated by mental illness. South Med J 1996;89:1142–46.

    Google Scholar 

  22. Borthwick-Duffy SA, Eyman RK. Who are the dually diagnosed. Am J Ment Retard 1990;94:586–95.

    Google Scholar 

  23. Roy A, Martin DM, Wells MB. Health gain through screening — mental health: Developing primary health care services for people with an intellectual disability. J Intellect Dev Disability 1997;22:227–39.

    Google Scholar 

  24. van Shrojenstein Lantman-de Valk HM, Metsemakers JF, Haveman MJ, Crebolder HF. Health problems in people with intellectual disability in general practice: A comprehensive study. Fam Pract 2000;17:405–407.

    Google Scholar 

  25. Beange H, McElduff A, Baker W. Medical disorders of adults with mental retardation: A population study. Am J Ment Retard 1995;99:595–604.

    Google Scholar 

  26. American Dietetic Association. Position of the American Dietetic Association: Nutrition in comprehensive program planning for persons with developmental disabilities. J Am Dietetic Assoc 1997;97:189–93.

    Google Scholar 

  27. Horwitz SM, Kerker BD, Owens, PL, Zigler E. The Health Status and Needs of Individuals with Mental Retardation. New Haven, CT: Yale University School of Medicine, Dept. of Epidemiology & Public Health, 2000.

    Google Scholar 

  28. Stewart L, Beange H, Mackerras D. A survey of dietary problems of adults with learning disabilities in the community. Mental Handicap Research 1994;7:41–50.

    Google Scholar 

  29. Wells MB, Turner S, Martin DM, Roy A. Health gain through screening — coronary heart disease and stroke. J Intellect Dev Disability 1997;22:251–59.

    Google Scholar 

  30. Rubin SS, Rimmer JH, Chicoine B, Braddock D, McGuire DE. Overweight prevalence in persons with Down syndrome. Ment Retard 1998;36:175–81.

    Google Scholar 

  31. Pitetti KH, Rimmer JH, Fernhall B. Physical fitness and adults with mental retardation. An overview of current research and future directions. Sports Med 1993;16:23–56.

    Google Scholar 

  32. World Health Organization. Ageing and Intellectual Disabilities — Improving Longevity and Promoting Healthy Ageing: Summative Report. Geneva, Switzerland: World Health Organization, 2000.

    Google Scholar 

  33. Gizani S, Declerck D, Vinckier F, Martens L, Marks L, Goffin G. Oral health condition of 12-year-old handicapped children in Flanders (Belgium). Community Dent Oral Epidemiol 1997;25:352–57.

    Google Scholar 

  34. Santos R, Evenhuis H, Stewart L, Kerr M, McElduff A, Fraser W. et al. Health Guidelines for Adults with an Intellectual Disability. International Association for the Scientific Study of Intellectual Disabilities (IASSID), 2002.

    Google Scholar 

  35. Balogh R, Ouellette-Kuntz H, Hunter D. Regional variation in dental procedures among people with an intellectual disability, Ontario, 1995–2001. J Can Dent Assoc 2004;70:681.

    Google Scholar 

  36. Beange H, Lennox N. Physical aspects of health in the learning disabled. Current Opinions in Psychiatry 1998;11:531–34.

    Google Scholar 

  37. Center J, Beange H, McElduff A. People with mental retardation have an increased prevalence of osteoporosis: A population study. Am J Ment Retard 1998;103:19–28.

    Google Scholar 

  38. Mul M, Veraart-Schretlen WIM, Bierman A. Hearing impairment in adults with an intellectual disability in general practise [in Dutch]. Huisart Wetenschap 1997;40:301–304.

    Google Scholar 

  39. van Schrojenstein Lantman-De Valk HMJ, van den Akker M, Maaskant MA, Haveman MJ, Urlings HFJ, Kessels AGH. et al. Prevalence and incidence of health problems in people with intellectual disability. J Intellect Disabil Res 1997;41:42–51.

    Google Scholar 

  40. Warburg M. Visual impairment among people with developmental delay. J Intellect Disabil Res 1994;38:423–32.

    Google Scholar 

  41. Evenhuis HM. Medical aspects of ageing in a population with intellectual disability: I - Visual impairment. J Intellect Disabil Res 1995;39:19–25.

    Google Scholar 

  42. van Schrojenstein Lantman-De Valk HMJ, Haveman MJ, Maaskant MA, Kessels AGH, Urlings HFJ, Sturmans F. The need for assessment of sensory functioning in ageing people with mental handicap. J Intellect Disabil Res 1994;38:289–98.

    Google Scholar 

  43. Thorpe L, Davidson P, Janicki MP. Healthy Ageing — Adults with Intellectual Disabilities: Biobehavioural Issues. Geneva, Switzerland: World Health Organization, 2000.

    Google Scholar 

  44. Hogg J, Lucchino R, Wang K, Janicki MP. Healthy Ageing — Adults with Intellectual Disabilities: Ageing and Social Policy. Geneva, Switzerland: World Health Organization, 2000.

    Google Scholar 

  45. Walsh P, Heller T, Schupf N, van Schrojenstein Lantman-de Valk H. Healthy Ageing — Adults with Intellectual Disabilities: Women’s Health Issues. Geneva, Switzerland: World Health Organization, 2000.

    Google Scholar 

  46. Evenhuis H, Henderson CM, Beange H, Lennox N, Chicoine B. Healthy Ageing — Adults with Intellectual Disabilities: Physical Health Issues. Geneva, Switzerland: World Health Organization, 2000.

    Google Scholar 

  47. Lewis MA, Lewis CE, Leake B, King BH, Lindemann R. The quality of health care for adults with developmental disabilities. Public Health Rep 2002;117:174–84.

    Google Scholar 

  48. Intagliata J, Rinck C. Psychoactive drug use in public and community residential facilities for mentally retarded persons. Psychopharmacol Bull 1985;21:268–78.

    Google Scholar 

  49. Branford D. A study of the prescribing for people with learning disabilities living in the community and in National Health Service care. J Intellect Disabil Res 1994;38(Pt6):577–86.

    Google Scholar 

  50. Konarski EA Jr, Sutton K, Huffman A. Personal characteristics associated with episodes of injury in a residential facility. Am J Ment Retard 1997;102:37–44.

    Google Scholar 

  51. MacLachlan R, Peppin P. Sexuality and contraception for developmentally handicapped persons. Can Fam Phys 1986;32:1631–37.

    Google Scholar 

  52. Pyles DA, Muniz K, Cade A, Silva R. A behavioral diagnostic paradigm for integrating behavior-analytic and psychopharmacological interventions for people with a dual diagnosis. Res Dev Disabil 1997;18:185–214.

    Google Scholar 

  53. Kerr M, Richards D, Glover G. Primary care for people with a learning disability — A group practice survey. Journal of Applied Research in Intellectual Disability 1996;9:347–52.

    Google Scholar 

  54. Lennox N, Green M, Diggens J, Ugoni A. Audit and comprehensive health assessment programme in the primary healthcare of adults with intellectual disability: A pilot study. J Intellect Disabil Res 2001;45:226–32.

    Google Scholar 

  55. Webb OJ, Rogers L. Health screening for people with intellectual disability: The New Zealand experience. J Intellect Disabil Res 1999;43:497–503.

    Google Scholar 

  56. Whitfield M, Langan J, Russell O. Assessing general practitioners’ care of adult patients with learning disability: Case control study. Quality in Health Care 1996;5:31–35.

    Google Scholar 

  57. Rimmer JH, Braddock D, Pitetti KH. Research on physical activity and disability: An emerging national priority. Med Sci Sports Exerc 1996;28:1366–72.

    Google Scholar 

  58. English National Board for Nursing. The Extent to Which Educational Programmes Develop the Skills Required to Communicate with People Who have Profound Learning and Multiple Disabilities. London, England: English National Board for Nursing, Midwifery and Health Visiting, 2000.

    Google Scholar 

  59. Rimmer JH, Braddock D, Marks B. Health characteristics and behaviors of adults with mental retardation residing in three living arrangements. Res Dev Disabil 1995;16:489–99.

    Google Scholar 

  60. Steele S. Assessment of functional wellness behaviors in adolescents who are mentally retarded. Issues Compr Pediatr Nurs 1986;9:331–40.

    Google Scholar 

  61. Paquette D. The Physical Activity Patterns of Adults with Developmental Disabilities. [MSc Thesis] Kingston, ON: Queen’s University, Department of Community Health & Epidemiology, 1997.

    Google Scholar 

  62. Scheerenberger RC. A History of Mental Retardation. Baltimore: Brookes Publishing Co., 1983.

    Google Scholar 

  63. Macdonald K. The evolution of developmental disability policy in Ontario. In: McCreary B, Peppin P, Stanton B (Eds.). Catalysts for University Education in Developmental Disabilities. Kingston, ON: Queen’s University, Developmental Consulting Program, 2001.

    Google Scholar 

  64. Radford J, Park D. Historical overview of developmental disabilities in Ontario. In: Brown I, Percy M (Eds.). Developmental Disabilities in Ontario. Toronto, ON: Front Porch Publishing, 1999.

    Google Scholar 

  65. McCreary B, Garcin N, Burge P, Stanton B, Saeed H. Building Resource Systems for People with a Dual Diagnosis. Kingston, ON: Developmental Consulting Program, Queen’s University, 2001.

    Google Scholar 

  66. Nirje B. The normalization principle and its human management implications. In: Wolfensberger W, Kugel R (Eds.). Changing Patterns in Residential Services for the Mentally Retarded. Washington, DC: President’s Committee on Mental Retardation, 1969;179–95.

    Google Scholar 

  67. Wolfensberger W. The Principle of Normalisation in Human Services. Toronto, ON: National Institute on Mental Retardation, 1972.

    Google Scholar 

  68. Braddock D, Hemp R, Rizzolo MC, Parish S, Pomeranz A. The State of the States in Developmental Disabilities, 2002 Study Summary. Washington, DC: American Association on Mental Retardation, 2002.

    Google Scholar 

  69. McCreary B. Developmental Disabilities: Still the Cinderella of Canadian Psychiatry. Conference proceedings, Vancouver, BC, 2002.

    Google Scholar 

  70. Day KA. Mental health services for people with mental retardation: A framework for the future. J Intellect Disabil Res 1993;37(Suppl 1):7–16.

    Google Scholar 

  71. Bouras N, Holt G. The planning and provision of psychiatric services for people with mental retardation. In: Gelder M, Lopez-Ibor JJ, Andreasen N (Eds.). New Oxford Textbook of Psychiatry. Oxford, UK: Oxford University Press, 2000;2007–12.

    Google Scholar 

  72. Lunsky Y, Bradley E. Developmental disability training in Canadian psychiatry residency programs. Can J Psychiatry 2001;46:138–43.

    Google Scholar 

  73. McCreary B, Peppin P, Stanton B. Catalysts for University Education in Developmental Disabilities. Kingston, ON: Developmental Consulting Program, Queen’s University, 2001.

    Google Scholar 

  74. Zarfas DE. Mental health systems for people with mental retardation: A Canadian perspective. Australian and New Zealand Journal of Developmental Disabilities 1988;14:3–7.

    Google Scholar 

  75. Fidler K, Hayfrom-Benjamin J, Swift I, Wilson R, Casson I. Family medicine. In: McCreary B, Peppin P, Stanton B (Eds.). Catalysts for University Education in Developmental Disabilities. Kingston, ON: Developmental Consulting Program, Queen’s University, 2001;79–95.

    Google Scholar 

  76. Government of Canada. Advancing the Inclusion of Persons with Disabilities. A Government of Canada Report. Her Majesty the Queen in Right of Canada, 2002.

    Google Scholar 

  77. Minnes P, Nachshen J, Woodford LM. The changing roles of families. In: Brown I, Percy M (Eds.). Developmental Disabilities in Ontario, 2nd Ed. Toronto, ON: Front Porch Press, 2003.

    Google Scholar 

  78. Gallagher JJ, Beckman P, Cross AH. Families of handicapped children: Sources of stress and its amelioration. Except Child 1983;50:10–19.

    Google Scholar 

  79. Minnes PM. Mental retardation: The impact upon the family. In: Burack JA, Hodapp RM, Zigler E (Eds.). Handbook of Mental Retardation and Development. Cambridge, UK: Cambridge University Press, 1998;693–712.

    Google Scholar 

  80. Frey KS, Greenberg MT, Fewell RR. Stress and coping among parents of handicapped children: A multidimensional approach. Am J Ment Retard 1989;94:240–49.

    Google Scholar 

  81. Dyson LL. Response to the presence of a child with disabilities: Parental stress and family functioning over time. Am J Ment Retard 1993;98:207–18.

    Google Scholar 

  82. Cummins R. The subjective well-being of people caring for a family member with a severe disability at home: A review. J Intellect Dev Disability 2001;26:83–100.

    Google Scholar 

  83. Baine D, McDonald L, Wilgosh L, Mellon S. Stress experienced by families of older adolescents or young adults with severe disability. Australian and New Zealand Journal of Developmental Disabilities 1993;18:177–88.

    Google Scholar 

  84. Griffiths D. Sexuality and people with developmental disabilities: Mythconceptions and facts. In: Brown I, Percy M (Eds.). Developmental Disabilities in Ontario, 2nd Ed. Toronto, ON: Front Porch Press, 1999;443–52.

    Google Scholar 

  85. Minnes P, Woodford L. Well-being in aging parents caring for an adult with a developmental disability. Journal on Developmental Disabilities 2004;11:47–66.

    Google Scholar 

  86. Wilgosh L, Waggoner K, Adams B. Parent views on education and daily living concerns for children with mental handicaps. Australian and New Zealand Journal of Developmental Disabilities 1988;14:225–59.

    Google Scholar 

  87. Curry CJ, Stevenson RE, Aughton D, Byrne J, Carey JC, Cassidy S, et al. Evaluation of mental retardation: Recommendations of a consensus conference: American College of Medical Genetics. Am J Med Genet 1997;72:468–77.

    Google Scholar 

  88. Majnemer A, Shevell MI. Diagnostic yield of the neurologic assessment of the developmental-ly delayed child. J Pediatr 1995;127:193–99.

    Google Scholar 

  89. Battaglia A, Bianchini E, Carey JC. Diagnostic yield of the comprehensive assessment of developmental delay/mental retardation in an institute of child neuropsychiatry. Am J Med Genet 1999;82:60–66.

    Google Scholar 

  90. Matalainen R, Airaksinen E, Mononen T, Launiala K, Kaarianen R. A population-based study on the causes of severe and profound mental retardation. Acta Pediatr 1995;84:261–66.

    Google Scholar 

  91. Rutter M, Simonoff E, Plomin R. Genetic influences on mild mental retardation: Concepts, findings and research implications. J Biosoc Sci 1996;28:509–26.

    Google Scholar 

  92. Chudley A. Advances in the genetics of developmental disabilities. In: Williams L (Ed.). Developmental Disabilities. Reno, NV: Context Press, 2004;1–49.

    Google Scholar 

  93. Xu J, Chen Z. Advances in molecular cyto-genetics for the evaluation of mental retardation. Am J Med Genet 2003;117C:15–24.

    Google Scholar 

  94. Budarf ML, Emanuel BS. Progress in the autosomal segmental aneusomy syndromes (SASs): Single or multi-locus disorders. Hum Mol Genet 1997;6:1657–65.

    Google Scholar 

  95. Joyce CA, Dennis NR, Cooper S, Browne CE. Subtelomeric rearrangements: Results from a study of selected and unselected probands with idiopathic mental retardation and control individuals by using high-resolution G-banding and FISH. Hum Genet 2001;109:440–51.

    Google Scholar 

  96. Flint J, Wilkie AO, Buckle VJ, Winter RM, Holland AJ, McDermid HE. The detection of subtelomeric chromosomal rearrangements in idiopathic mental retardation. Nat Genet 1995;9:132–40.

    Google Scholar 

  97. Knight SJ, Regan R, Nicod A, Horsley SW, Kearney L, Homfray T. et al. Subtle chromosomal rearrangements in children with unexplained mental retardation. Lancet 1999;354:1676–81.

    Google Scholar 

  98. Knight SJ, Flint J. Perfect endings: A review of subtelomeric probes and their use in clinical diagnosis. J Med Genet 2000;37:401–409.

    Google Scholar 

  99. Slavotinek A, Rosenberg M, Knight S, Gaunt L, Fergusson W, Killoran C. et al. Screening for submicroscopic chromosome rearrangements in children with idiopathic mental retardation using microsatellite markers for the chromosome telomeres. J Med Genet 1999;36:405–11.

    Google Scholar 

  100. Solinas-Toldo S, Lampel S, Stilgenbauer S, Nickolenko J, Benner A, Dohner H. et al. Matrix-based comparative genomic hybridization: Biochips to screen for genomic imbalances. Genes Chromosomes.Cancer 1997;20:399–407.

    Google Scholar 

  101. Wilson GN, Cooley WC. Preventative Management for Children with Congenital Anomalies and Syndromes. Cambridge, UK: Cambridge University Press, 1999.

    Google Scholar 

  102. Cohen WI. Down syndrome preventative medical check list. Down Syndrome Papers and Abstracts for Professionals 1992;15:1–7.

    Google Scholar 

  103. American Academy of Pediatrics Committee on Genetics. Health supervision for children with Down syndrome. Pediatrics 1994;93:855–59.

    Google Scholar 

  104. American Academy of Pediatrics Committee on Genetics. Health supervision for children with Down Syndrome. Pediatrics 1995;95:443–51.

    Google Scholar 

  105. American Academy of Pediatrics Committee on Genetics. Health supervision for children with neurofibromatosis. Pediatrics 1995;96:368–72.

    Google Scholar 

  106. American Academy of Pediatrics Committee on Genetics. Health supervision for children with fragile X syndrome. Pediatrics 1996;98:297–300.

    Google Scholar 

  107. American Academy of Pediatrics Committee on Genetics. Health supervision for children with Marfan syndrome. Pediatrics 1996;98:978–82.

    Google Scholar 

  108. van Allen MI, Fung J, Jurenka SB. Health care concerns and guidelines for adults with Down syndrome. Am J Med Genet 1999;89:100–110.

    Google Scholar 

  109. Holtzman NA. Recombinant DNA technology, genetic tests and public policy. Am J Hum Genet 1988;42:623–45.

    Google Scholar 

  110. Holtzman NA. Proceed with Caution: The Use of Recombinant DNA Testing for Genetic Testing. Baltimore, MD: Johns Hopkins University Press, 1989.

    Google Scholar 

  111. Wildner M. Health economic issues of screening programmes. Eur J Pediatr 2003;162:S5–S7.

    Google Scholar 

  112. Wilson GN. Preventive medicine for genetic disorders. Am J Med Genet 1999;89:55–57.

    Google Scholar 

  113. Rimmer JH. Physical fitness in people with mental retardation [article on the Internet]. ARC of the USA. Available from: https://doi.org/www.thearc.org/faqs/fitness/html.

  114. Varela AM, Sardinha LB, Pitetti KH. Effects of an aerobic rowing training regimen in young adults with Down syndrome. Am J Ment Retard 2001;106:135–44.

    Google Scholar 

  115. Bohmer CJ, Klinkenberg-Knol EC, Kuipers EJ, Niezen-de Boer MC, Schreuder H, Schuckink-Kool F. et al. The prevalence o. Helicobacter pylori infection among inhabitants and healthy employees of institutes for the intellectually disabled. Am J Gastroenterol 1997;92:1000–1004.

    Google Scholar 

  116. Wallace R, Schluter PJ, Duff M, Ouellette-Kuntz H, Webb PM, Scheepers M. A review of the risk factors for, consequence, diagnosis and management o. Helicobacter pylori in adults with intellectual disability. Journal of Policy and Practice in Intellectual Disability 2005;1(3/4):147–63.

    Google Scholar 

  117. McColl K, Murray L, El-Omar Dickson A, El-Nujumi A, Wirz A. et al. Symptomatic benefit from readicatio. Helicobacter pylori infection in patients with non-ulcer dyspepsia. N Engl J Med 1988;339:1869–74.

    Google Scholar 

  118. Kennedy C. Screening for Helicobacter pylori in Adults with Developmental Disabilities — Prevalence of Infection and Testing considerations for Urea Breath Test, Serology and Whole Blood Methods. [MSc Thesis] Kingston, ON: Department of Community Health & Epidemiology, Queen’s University, 2000.

    Google Scholar 

  119. Martin DM, Roy A, Wells MB. Health gain through health checks: Improving access to primary health care for people with intellectual disability. J Intellect Disabil Res 1997;41 (Pt5):401–408.

    Google Scholar 

  120. Batavia AI, Beaulaurier RL. The financial vulnerability of people with disabilities: Assessing poverty risks. J of Sociology and Social Welfare 2001;28:139–62.

    Google Scholar 

  121. Fujiura GA. Global Perspective on Disability Epidemiology. Conference proceeding, Valhalla, NY, 2003.

    Google Scholar 

  122. Park JY, Turnbull AP, Turnbull HR. Impacts of poverty on quality of life in families of children with disabilities. Except Child 2002;68:151–70.

    Google Scholar 

  123. LeRoy BW, Johnson DM. Open road or blind alley? Welfare reform, mothers, and children with disabilities. J Family and Economic Issues 2002;23:323–37.

    Google Scholar 

  124. Neri MT, Kroll T. Understanding the consequences of access barriers to health care: Experiences of adults with disabilities. Disabil Rehabil 2003;25:85–96.

    Google Scholar 

  125. Ontario Public Health Association and Frontier College. The Literacy and Health Project, Phase One: Making the World Healthier and Safer for People Who Can’t Read. Toronto, ON:, OPHA and Frontier College, 1989.

    Google Scholar 

  126. Hogg J. Essential healthcare for people with learning disabilities: Barriers and opportunities. J R Soc Med 2001;94:333–36.

    Google Scholar 

  127. Wilson DN, Haire A. Health care screening for people with mental handicap living in the community. BMJ 1990;301:1379–81.

    Google Scholar 

  128. Craig V. Screening for Undiagnosed Hypertension in the Developmentally Disabled. [MSc Thesis] Kingston, ON: Department of Community Health & Epidemiology, Queen’s University, 1998.

    Google Scholar 

  129. Voelker R. Improved care for neglected population must be “rule rather than exception”. JAMA 2002;288:299–301.

    Google Scholar 

  130. Howells G. Are the medical needs of mentally handicapped adults being met. J R Coll Gen Pract 1986;36:449–53.

    Google Scholar 

  131. Decker HA, Herberg EN, Haythornthwaite MS, Rupke LK, Smith DC. Provision of health care for institutionalized retarded children. American Journal of Mental Deficiency 1968;33:283–93.

    Google Scholar 

  132. Nelson R, Crocker A. The medical care of mentally retarded persons in public residential facilities. N Engl J Med 1978;299:1039–44.

    Google Scholar 

  133. Balogh R, Hunter D, Ouellette-Kuntz H. Hospital utilization among persons with an intellectual disability, Ontario, Canada, 1995–2001. Journal of Applied Research in Intellectual Disability. In press, 2005.

    Google Scholar 

  134. Keane VE. The incidence of speech and language problems in the mentally retarded. Ment Retard 1972;10:3–8.

    Google Scholar 

  135. Matthews J. Communication disorders in the mentally retarded. In: Travis LE (Ed.). Handbook of Speech Pathology & Audiology. New York, NY: Appleton-Century-Crofts, 1971.

    Google Scholar 

  136. Perkins W. Speech Pathology: An Applied Behavioural Science. St. Louis, MI: The C. V. Mosby Co., 1971.

    Google Scholar 

  137. Reynolds W, Reynolds S. Prevalance of speech and hearing impairment of noninstitutionalized mentally retarded adults. Am J Ment Deficiency 1979;84:62–66.

    Google Scholar 

  138. Paquette D, Ouellette-Kuntz H, Stanton B, Garrett SA, Murphy K. A survey of the need for communication assessment among adults with developmental disabilities living in the community. Journal on Developmental Disabilities 1999;6(2):1–14.

    Google Scholar 

  139. Choi KH, Wynne ME. Providing services to Asian Americans with developmental disabilities and their families: Mainstream service providers’ perspective. Community Ment Health J 2000;36:589–95.

    Google Scholar 

  140. Voelker R. Putting mental retardation and mental illness on health care professionals’ radar screen. JAMA 2002;288:433–35.

    Google Scholar 

  141. Hargie O, Dickson D, Boohan M, Hughes K. A survey of communication skills training in UK schools of medicine: Present practices and prospective proposals. Med Educ 1998;32:25–34.

    Google Scholar 

  142. Kruijver IP, Kerkstra A, Francke AL, Bensing JM, van de Wiel HB. Evaluation of communication training programs in nursing care: A review of the literature. Patient Educ Couns 2000;39:129–45.

    Google Scholar 

  143. Adair L. The patient’s agenda. Nurs Stand 1994;9:20–23.

    Google Scholar 

  144. Russell S. An exploratory study of patients’ perceptions, memories and experiences of an intensive care unit. J Adv Nurs 1999;29:783–91.

    Google Scholar 

  145. Young A. Law series: 1. Complaints. Br J Nurs 1995;4:59.

    Google Scholar 

  146. Walsh P, Heller T. Health of Women with Intellectual Disabilities. London, England: Blackwell Publishing, 2000.

    Google Scholar 

  147. Schopp LH, Sanford TC, Hagglund KJ, Gay JW, Coatney MA. Removing service barriers for women with physical disabilities: Promoting accessibility in the gynecologic care setting. J Midwifery Womens Health 2002;47:74–79.

    Google Scholar 

  148. Chomicki S, Wilgosh L. Health care concerns among parents of children with mental retardation. Child Health Care 1992;21:206–12.

    Google Scholar 

  149. Turnbull HR, Turnbull AP. Parents Speak Out. Then and Now. Toronto, ON: Charles Merrill Publishing, 1985.

    Google Scholar 

  150. Burge P, Ouellette-Kuntz H, McCreary B, Bradley E, Leichner P. Senior residents in psychiatry: Views on training in developmental disabilities. Can J Psychiatry 2002;47:568–71.

    Google Scholar 

  151. Waldman HB, Perlman SP. Children with disabilities are aging out of dental care. ASDC J Dent Child 1997;64:385–90.

    Google Scholar 

  152. Standing Committee on Human Resources Development and the Status of Persons with Disabilities. A Common Vision: Interim Report. Canadian House of Commons, 2001.

    Google Scholar 

  153. Government of Canada. Future Directions to Address Disability Issues for the Government of Canada: Working Together for Full Citizenship. Government of Canada, 1999.

    Google Scholar 

  154. Ministers of Social Services in Canada. In Unison: A Canadian Approach to Disability Issues — A Vision Paper. Her Majesty the Queen in Right of Canada, 1998.

    Google Scholar 

  155. Ministers of Social Services in Canada. In Unison 2000: Persons with Disabilities in Canada. Her Majesty the Queen in Right of Canada, 2000.

    Google Scholar 

  156. Human Resources Development Canada. Defining Disability: A Complex Issue. Government of Canada, 2003.

    Google Scholar 

  157. Department of Health. Valuing People: A New Strategy for Learning Disability for the 21st Century. London, England: Her Majesty’s Stationary Office, 2001.

    Google Scholar 

  158. Scottish Executive. Promoting Health, Supporting Inclusion. The National Review of the Contribution of All Nurses and Midwives to the Care and Support of People with Learning Disabilities. Edinburgh, Scotland: The Stationery Office, 2002.

    Google Scholar 

  159. U.S.C.A.§226. et seq. Mental Retardation Facilities and Community Mental Health Centers Construction Act of 1963. Public Law 88–164, Title 42. 1963.

    Google Scholar 

  160. Tassé MJ. University Centers of Excellence in Developmental Disabilities: An Overview of Their History, Mission, and Accomplishments. Conference proceeding. Kingston, ON, 2001.

    Google Scholar 

  161. Griffiths DM, James R. Mapping the Future in Mental Health and Developmental Disability. Conference proceeding. Vancouver, BC, 2002.

    Google Scholar 

  162. Morrissey P. Health Disparities Among Individuals with Disabilities — Partnerships for Change. Conference proceeding. Valhalla, NY, 2003.

    Google Scholar 

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Authors and Affiliations

  1. Department of Community Health & Epidemiology, Queen’s University, 191 Portsmouth Ave., Kingston, ON K7M 8A6, Canada

    Hélène Ouellette-Kuntz MSc

  2. Department of Psychiatry, Queen’s University & PREM-TGC, Canada

    Nathalie Garcin PhD

  3. Department of Medical Genetics, UBC and BC Children’s and Women’s Hospital, Canada

    M. E. Suzanne Lewis MD

  4. Departments of Psychology & Psychiatry, Queen’s University, Canada

    Patricia Minnes PhD

  5. Department of Otolaryngology, Queen’s University, Canada

    Carol Martin MA

  6. Departments of Psychiatry & Physiology, Queen’s University, Canada

    Jeanette J. A. Holden PhD

Authors
  1. Hélène Ouellette-Kuntz MSc
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  2. Patricia Minnes PhD
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  3. Nathalie Garcin PhD
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  4. Carol Martin MA
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  5. M. E. Suzanne Lewis MD
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  6. Jeanette J. A. Holden PhD
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Correspondence to Hélène Ouellette-Kuntz MSc.

Additional information

Acknowledgments, Sources of Support and Disclaimer: The original paper that forms the basis of this manuscript was commissioned by the Canadian Institutes of Health Research for the International Think Tank on Reducing Health Disparities and Promoting Equity for Vulnerable Populations held in Ottawa, Canada (September 21–23, 2003). The authors first prepared a draft paper for discussion at the Think Tank. The paper was then revised and finalized by incorporating many of the comments and suggestions made during the Think Tank discussions. While individuals with other disabilities (physical, sensory, mental/emotional) also face significant health disparities, the authors and the Think Tank Disability Discussion Group deemed it desirable to retain the original focus of the paper on intellectual disabilities (ID). Many parallels can be drawn from the focus on ID to other disability groups. However, the issues faced by Canadians with ID, including a history of institutionalization, the lifelong nature of the disability, the effects of cognitive and other deficits through the developmental years and the multiple medical disorders seen across syndromes associated with ID present distinct and extensive vulnerabilities in this population.

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Ouellette-Kuntz, H., Minnes, P., Garcin, N. et al. Addressing Health Disparities Through Promoting Equity for Individuals with Intellectual Disability. Can J Public Health 96 (Suppl 2), S8–S22 (2005). https://doi.org/10.1007/BF03403699

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