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Special Population: Adults with Intellectual and Developmental Disabilities

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Chronic Illness Care

Abstract

Adults with intellectual and developmental disabilities (IDD) encompass individuals who have a range of diagnoses (e.g., autism spectrum disorder) and designations (e.g., mental retardation), and most receive care through primary care providers in their communities. An interdisciplinary approach that incorporates home and community-based services is effective and can be facilitated by care managers in a medical home model. Preventive services should follow established guidelines as in the general population with some modifications, including regular monitoring of weight and height. Swallowing difficulties and gastroesophageal reflux disease are not uncommon which increases the risk for respiratory disorders. A medication review should be conducted at regular intervals to check for polypharmacy, and antipsychotic drugs should no longer be routinely used to treat problem behaviors. Pain and other physical symptoms are often unrecognized and can present atypically in acute situations.

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References

  1. Ervin DA, Hennen B, Merrick J, Morad M. Healthcare for persons with intellectual and developmental disability in the community. Front Public Health. 2014;2:1–8.

    Google Scholar 

  2. Anderson LH, Humpries K, McDermott S, et al. The state of the science of health and wellness for adults with intellectual and developmental disabilities. Intellect Dev Disabil. 2013;51:385–98.

    Article  PubMed  PubMed Central  Google Scholar 

  3. AAIDD. FAQs on intellectual disability: American Association on Intellectual and Developmental Disabilities (AAIDD); 2013. Available from: https://aaidd.org/intellectual-disability/definition/faqs-on-intellectual-disability#.V_VDcY8rKUk.

  4. North Carolina Council on Developmental Disabilities. Definition of Intellectual Disability and Developmental Disabilities (I/DD). Raleigh; 2015. Available from: http://www.nc-ddc.org/home/definition.html.

  5. Carmeli E, Imam B. Health promotion and disease prevention strategies in older adults with intellectual and developmental disabilities. Front Public Health. 2014;2:1–7.

    Google Scholar 

  6. Ervin DA, Williams A, Merrick J. Primary care: mental and behavioral health and persons with intellectual and developmental disabilities. Front Public Health. 2014;2((Article 76)):1–5.

    Google Scholar 

  7. Hsieh K, Rimmer J, Heller T. Prevalence of falls and risk factors in adults with intellectual disability. Am J Intellect Dev Disabil. 2012;117:442–54.

    Article  PubMed  Google Scholar 

  8. Moran JA, Rafii MS, Keller SM, et al. The National Task Group on intellectual and dementia practices consensus recommendations for the evaluation and management of dementia in adults with intellectual disabilities. Mayo Clin Proc. 2013;88(8):831–40.

    Article  PubMed  Google Scholar 

  9. Scepters M, Keer M, O’Hara D, et al. Reducing health disparity in people with intellectual disabilities: a report from the health issues special interest group of the International Association of Intellectual Disability. J Policy Pract Intellect Disabil. 2005;2:249–55.

    Article  Google Scholar 

  10. Balogh R, Ouellete-Kuntz H, Bourne L, et al. Organising health care services for persons with an intellectual disability. In: Cochrane database of systematic reviews, editor. John Wiley & Sons; 2008. p. CD007492.

    Google Scholar 

  11. Havercamp SM, Scott HM. National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disabil Health J. 2015;8:165–72.

    Article  PubMed  Google Scholar 

  12. US Public Health Service. Closing the gap: a national blueprint for improving the health of individuals with mental retardation. Washington, DC: US Public Health Service; 2001.

    Google Scholar 

  13. Wilkinson J, Dreyfus D, Cerreto M, Bokhour B. “Sometimes I feel overwhelmed”: educational needs of family physicians caring for people with intellectual disability. Intellect Dev Disabil. 2012;50(3):243–50.

    Article  PubMed  PubMed Central  Google Scholar 

  14. United Nations. Convention on the rights of persons with disabilities. 2006.

    Google Scholar 

  15. American Association on Intellectual and Developmental Disabilities. Joint position statement of AAIDD and the arc on health, mental health, vision, and dental care. Washington, DC; 2013. Available from: http://aaidd.org/news-policy/policy/position-statements/health-mental-health-vision-and-dental-care#.VL01zkfF93M.

  16. Massachusetts Department of Developmental Services. Massachusetts Department of developmental Services adult screening recommendations. Boston: Massachusetts Department of Developmental Services; 2012.

    Google Scholar 

  17. Sullivan WF, Berg JM, Bradley E, et al. Primary care of adults with developmental disabilities. Can Fam Physician. 2011;57:541–53.

    PubMed  PubMed Central  Google Scholar 

  18. Lennox N, Bain C, Rey-Conde T, Purdie D, Bush R, Pandeya N. Effects of a comprehensive health assessment programme for Australian adults with intellectual disability: a cluster randomized trial. Int J Epidemiol. 2007;36(1):139–46.

    Article  PubMed  Google Scholar 

  19. Kripke CC. Primary care for adolescents with developmental disabilities. Prim Care. 2014;41(3):507–18.

    Article  PubMed  Google Scholar 

  20. Cassidy SB, Allanson JE. Management of genetic syndromes. 3rd ed. Hoboken: Wiley-Blackwell; 2010. p. xxii. 962 p. p

    Book  Google Scholar 

  21. The AAIDD Ad Hoc Committee on Terminology and Classification. Intellectual disability, definition, classification, an systems of supports. Washington, DC: American Association on Intellectual and Developmental Disabilities; 2010.

    Google Scholar 

  22. 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(4):468–77.

    Article  CAS  PubMed  Google Scholar 

  23. Fletcher RJ, National Association for the Dually Diagnosed, American Psychiatric Association. DM-ID : diagnostic manual-intellectual disability: a clinical guide for diagnosis of mental disorders in persons with intellectual disability. Kingston: NADD Press; 2007. p. xxxi. 351 p. p

    Google Scholar 

  24. Oberlander TF, Symons FJ. Pain in children and adults with developmental disabilities. Baltimore: Paul H. Brookes Pub.; 2006. p. xviii. 246 p. p

    Google Scholar 

  25. Lotan M, Ljunggren EA, Johnsen TB, Defrin R, Pick CG, Strand LI. A modified version of the non-communicating children pain checklist-revised, adapted to adults with intellectual and developmental disabilities: sensitivity to pain and internal consistency. J Pain. 2009;10(4):398–407.

    Article  PubMed  Google Scholar 

  26. Brown I, Percy ME. A comprehensive guide to intellectual and developmental disabilities. Baltimore: P. H. Brookes; 2007. p. xxv. 768 p. p

    Google Scholar 

  27. van Schrojenstein Lantman-de Valk HM, Walsh PN. Managing health problems in people with intellectual disabilities. BMJ. 2008;337:a2507.

    Article  PubMed  Google Scholar 

  28. Owens PL, Kerker BD, Zigler E, Horwitz SM. Vision and oral health needs of individuals with intellectual disability. Ment Retard Dev Disabil Res Rev. 2006;12(1):28–40.

    Article  PubMed  Google Scholar 

  29. Patja K, Molsa P, Iivanainen M. Cause-specific mortality of people with intellectual disability in a population-based, 35-year follow-up study. J Intellect Disabil Res. 2001;45(Pt 1):30–40.

    Article  CAS  PubMed  Google Scholar 

  30. Morad M, Nelson NP, Merrick J, Davidson PW, Carmeli E. Prevalence and risk factors of constipation in adults with intellectual disability in residential care centers in Israel. Res Dev Disabil. 2007;28(6):580–6.

    Article  PubMed  Google Scholar 

  31. Bohmer CJ, Klinkenberg-Knol EC, Niezen-de Boer MC, Meuwissen SG. Gastroesophageal reflux disease in intellectually disabled individuals: how often, how serious, how manageable? Am J Gastroenterol. 2000;95(8):1868–72.

    Article  CAS  PubMed  Google Scholar 

  32. Kitchens DH, Binkley CJ, Wallace DL, Darling D. Helicobacter pylori infection in people who are intellectually and developmentally disabled: a review. Spec Care Dentist. 2007;27(4):127–33.

    Article  PubMed  Google Scholar 

  33. Leslie WD, Pahlavan PS, Roe EB, Dittberner K. Bone density and fragility fractures in patients with developmental disabilities. Osteoporos Int. 2009;20(3):379–83.

    Article  CAS  PubMed  Google Scholar 

  34. Jaffe JS, Timell AM, Elolia R, Thatcher SS. Risk factors for low bone mineral density in individuals residing in a facility for the people with intellectual disability. J Intellect Disabil Res. 2005;49(Pt 6):457–62.

    Article  CAS  PubMed  Google Scholar 

  35. Zylstra RG, Porter LL, Shapiro JL, Prater CD. Prevalence of osteoporosis in community-dwelling individuals with intellectual and/or developmental disabilities. J Am Med Dir Assoc. 2008;9(2):109–13.

    Article  PubMed  Google Scholar 

  36. Janicki MP, Davidson PW, Henderson CM, McCallion P, Taets JD, Force LT, et al. Health characteristics and health services utilization in older adults with intellectual disability living in community residences. J Intellect Disabil Res. 2002;46(Pt 4):287–98.

    Article  CAS  PubMed  Google Scholar 

  37. Kerr M, Guidelines Working G, Scheepers M, Arvio M, Beavis J, Brandt C, et al. Consensus guidelines into the management of epilepsy in adults with an intellectual disability. J Intellect Disabil Res. 2009;53(8):687–94.

    Article  CAS  PubMed  Google Scholar 

  38. Kapell D, Nightingale B, Rodriguez A, Lee JH, Zigman WB, Schupf N. Prevalence of chronic medical conditions in adults with mental retardation: comparison with the general population. Ment Retard. 1998;36(4):269–79.

    Article  CAS  PubMed  Google Scholar 

  39. McDermott S, Moran RR, Platt T. The epidemiology of common health conditions among adults with developmental disabilities in primary care. New York: Nova Biomedical Books; 2008. 140 p. p

    Google Scholar 

  40. Wallace RA, Schluter P. Audit of cardiovascular disease risk factors among supported adults with intellectual disability attending an ageing clinic. J Intellect Develop Disabil. 2008;33(1):48–58.

    Article  Google Scholar 

  41. Wilson W, Taubert KA, Gewitz M, Lockhart PB, Baddour LM, Levison M, et al. Prevention of infective endocarditis: guidelines from the American Heart Association: a guideline from the American Heart Association Rheumatic Fever, Endocarditis and Kawasaki Disease Committee, Council on Cardiovascular Disease in the Young, and the Council on Clinical Cardiology, Council on Cardiovascular Surgery and Anesthesia, and the Quality of Care and Outcomes Research Interdisciplinary Working Group. J Am Dent Assoc. 2008;139(Suppl):3S–24S.

    Article  PubMed  Google Scholar 

  42. Deb S, Kwok H, Bertelli M, Salvador-Carulla L, Bradley E, Torr J, et al. International guide to prescribing psychotropic medication for the management of problem behaviours in adults with intellectual disabilities. World Psychiatry. 2009;8(3):181–6.

    Article  PubMed  PubMed Central  Google Scholar 

  43. Tsiouris JA. Pharmacotherapy for aggressive behaviours in persons with intellectual disabilities: treatment or mistreatment? J Intellect Disabil Res. 2010;54(1):1–16.

    Article  CAS  PubMed  Google Scholar 

  44. Tyrer P, Oliver-Africano PC, Ahmed Z, Bouras N, Cooray S, Deb S, et al. Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: a randomised controlled trial. Lancet. 2008;371(9606):57–63.

    Article  CAS  PubMed  Google Scholar 

  45. Wilkinson JE, Cerreto MC. Primary care for women with intellectual disabilities. J Am Board Fam Med. 2008;21(3):215–22.

    Article  PubMed  PubMed Central  Google Scholar 

  46. Wehmeyer ML. A comprehensive guide to intellectual and developmental disabilities. 2nd ed. Baltimore: Paul H. Brookes Publishing, Co.; 2017. pages cm p

    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(2):174–84.

    Article  PubMed  PubMed Central  Google Scholar 

  48. Wilkinson JE, Culpepper L, Cerreto M. Screening tests for adults with intellectual disabilities. J Am Board Fam Med. 2007;20:399–407.

    Article  PubMed  PubMed Central  Google Scholar 

  49. Rimmer JH, Yamaki K. Obesity and intellectual disability. Ment Retard Dev Disabil Res Rev. 2006;12(1):22–7.

    Article  PubMed  Google Scholar 

  50. Bhaumik S, Watson JM, Thorp CF, Tyrer F, McGrother CW. Body mass index in adults with intellectual disability: distribution, associations and service implications: a population-based prevalence study. J Intellect Disabil Res. 2008;52(Pt 4):287–98.

    Article  CAS  PubMed  Google Scholar 

  51. Evenhuis HM, Sjoukes L, Koot HM, Kooijman AC. Does visual impairment lead to additional disability in adults with intellectual disabilities? J Intellect Disabil Res. 2009;53(1):19–28.

    Article  CAS  PubMed  Google Scholar 

  52. Hassiotis A, Barron DA, Hall IP. Intellectual disability psychiatry: a practical handbook. Chichester: Wiley; 2009. p. p

    Book  Google Scholar 

  53. Deb S, Thomas M, Bright C. Mental disorder in adults with intellectual disability. 1: prevalence of functional psychiatric illness among a community-based population aged between 16 and 64 years. J Intellect Disabil Res. 2001;45(Pt 6):495–505.

    Article  CAS  PubMed  Google Scholar 

  54. Aman MG, Singh NN, Stewart AW, Field CJ. Psychometric characteristics of the aberrant behavior checklist. Am J Ment Defic. 1985;89(5):492–502.

    CAS  PubMed  Google Scholar 

  55. Taylor JL, Hatton C, Dixon L, Douglas C. Screening for psychiatric symptoms: PAS-ADD checklist norms for adults with intellectual disabilities. J Intellect Disabil Res. 2004;48(1):37–41.

    Article  CAS  PubMed  Google Scholar 

  56. Pfister AA, Roberts AG, Taylor HM, Noel-Spaudling S, Damian MM, Charles PD. Spasticity in adults living in a developmental center. Arch Phys Med Rehabil. 2003;84(12):1808–12.

    Article  PubMed  Google Scholar 

  57. Ball SL, Holland AJ, Treppner P, Watson PC, Huppert FA. Executive dysfunction and its association with personality and behaviour changes in the development of Alzheimer’s disease in adults with Down syndrome and mild to moderate learning disabilities. Br J Clin Psychol. 2008;47(Pt 1):1–29.

    Article  PubMed  Google Scholar 

  58. McCabe MP, McGillivray JA, Newton DC. Effectiveness of treatment programmes for depression among adults with mild/moderate intellectual disability. J Intellect Disabil Res. 2006;50(Pt 4):239–47.

    Article  CAS  PubMed  Google Scholar 

  59. Hemmings CP, Gravestock S, Pickard M, Bouras N. Psychiatric symptoms and problem behaviours in people with intellectual disabilities. J Intellect Disabil Res. 2006;50(Pt 4):269–76.

    Article  CAS  PubMed  Google Scholar 

  60. Dosen A, Day K. Treating mental illness and behavior disorders in children and adults with mental retardation, vol. xv. 1st ed. Washington, DC: American Psychiatric Press; 2001. 561 p. p

    Google Scholar 

  61. Jones S, Cooper SA, Smiley E, Allan L, Williamson A, Morrison J. Prevalence of, and factors associated with, problem behaviors in adults with intellectual disabilities. J Nerv Ment Dis. 2008;196(9):678–86.

    Article  PubMed  Google Scholar 

  62. Jones RSP, Eayrs C. Challenging behaviour and intellectual disability: a psychological perspective. Clevedon: BILD Publlications; 1993. p. ix. 267 p. p

    Google Scholar 

  63. Sullivan W, Berg JM, Bradley EA, Brooks-Hill RW, Goldfarb CE, Lovering JS, et al. Enhancing the emergency department outcomes of patients with mental retardation. Ann Emerg Med. 2000;36(4):399–400.

    Article  CAS  PubMed  Google Scholar 

  64. Bhaumik S, Branford D, Barrett M, Gangadharan SK. The Frith prescribing guidelines for people with intellectual disability. 3rd ed. Chichester: Wiley; 2015. p. p.

    Book  Google Scholar 

  65. Ervin DA, Hennen B, Merrick J, Morad M. Healthcare for persons with intellectual and developmental disability in the community. Front Public Health. 2014;2:83.

    PubMed  PubMed Central  Google Scholar 

  66. Grumbach K, Bodenheimer T. A primary care home for Americans: putting the house in order. JAMA. 2002;288:889–93.

    Article  PubMed  Google Scholar 

  67. Weedon D, Carbone P, Bilder D, O’Brien S, Dorius J. Building a person-centered medical home: lessons from a program for people with developmental disabilities. J Health Care Poor Underserved. 2012;23(4):1600–8.

    Article  PubMed  Google Scholar 

  68. Drotar DD, Strum LA. Interdisciplinary collaboration in the practice of mental retardation. In: Jacobson JW, Mulick DC, editors. Manual of diagnosis and professional practice in mental retardation. Washington, DC: American Psychological Association; 1996.

    Google Scholar 

  69. Rich E, Lipson D, Libersky J, et al. Coordinating care for adults with complex care needs in the patient-centered medical home: challenges and solutions. Rockville: AHRQ; 2012.

    Google Scholar 

  70. Taylor EF, Machta RM, Meyers DS, et al. Enhancing the primary care team to provide redesigned care: the roles of practice facilitators and care managers. Ann Fam Med. 2013;11:80–3.

    Article  PubMed  PubMed Central  Google Scholar 

  71. Martin S, Kelly G, Kernohan W, McCreight B, Nugent C. Smart home technologies for health and social care support. In: Cochrane database of systematic reviews, editor. John Wiley & Sons; 2008. p. CD007492.

    Google Scholar 

  72. Boisvert M, Lang R, Andrianopoulos M, Boscarin ML. Telepractice in the assessment and treatment of individuals with autism spectrum disorders: a systematic review. Dev Neurorehabil. 2010;13(6):423–32.

    Article  PubMed  Google Scholar 

  73. National Council on Disability (U.S.). The current state of health care for people with disabilities. Washington, DC: National Council on Disability; 2009. 454 p. p

    Google Scholar 

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  1. Department of Family Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Timothy P. Daaleman

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  1. Department of Family Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA

    Timothy P. Daaleman

  2. Department of Family Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA

    Margaret R. Helton

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Daaleman, T.P. (2018). Special Population: Adults with Intellectual and Developmental Disabilities. In: Daaleman, T., Helton, M. (eds) Chronic Illness Care. Springer, Cham. https://doi.org/10.1007/978-3-319-71812-5_26

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  • DOI: https://doi.org/10.1007/978-3-319-71812-5_26

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