Review Article

Primary Care of Adults with Intellectual and Developmental Disabilities

Authors: Timothy P. Daaleman, DO, MPH

Abstract

Most adults with intellectual and developmental disabilities 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 and increase 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 used routinely to treat problem behaviors. Pain and other physical symptoms often are unrecognized and can present atypically in acute situations.

This content is limited to qualifying members.

Existing members, please login first

If you have an existing account please login now to access this article or view purchase options.

Purchase only this article ($25)

Create a free account, then purchase this article to download or access it online for 24 hours.

Purchase an SMJ online subscription ($75)

Create a free account, then purchase a subscription to get complete access to all articles for a full year.

Purchase a membership plan (fees vary)

Premium members can access all articles plus recieve many more benefits. View all membership plans and benefit packages.

References

1. Ervin DA, Hennen B, Merrick J, et al. Healthcare for persons with intellectual and developmental disability in the community. Front Public Health 2014;2:83.
 
2. Anderson LL, Humphries 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;51:385-398.
 
3. North Carolina Council on Developmental Disabilities. Definition of Intellectual Disability and Developmental Disabilities (I/DD). http://www.ncdhhs.gov/assistance/disability-services/intellectual-developmental-disabilities. Accessed January 19, 2015.
 
4. 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;2:249-255.
 
5. Balogh R, Ouellette-Kuntz H, Bourne L, et al. Organising health care services for persons with an intellectual disability. Cochrane Database Syst Rev 2008;4:CD007492.
 
6. American Association on Intellectual and Developmental Disabilities. Joint position statement of AAIDD and The Arc. Health, mental health, vision, and dental care. http://aaidd.org/news-policy/policy/position-statements/health-mental-health-vision-and-dental-care#.VL01zkfF93M. Accessed January 2, 2015.
 
7. Wilkinson J, Dreyfus D, Cerreto M, et al. ‘‘Sometimes I feel overwhelmed’’: educational needs of family physicians caring for people with intellectual disability. Intellect Dev Disabil 2012;50:243-250.
 
8. Massachusetts Department of Developmental Services adult screening recommendations. http://www.mass.gov/eohhs/docs/dmr/reports/health-screening-wallchart.pdf. Published 2014. Accessed November 19, 2015.
 
9. Sullivan WF, Berg JM, Bradley E, et al. Primary care of adults with developmental disabilities: Canadian consensus guidelines. Can Fam Physician 2011;57:541-553, e154-e-168. [Article in English, French].
 
10. Grumbach K, Bodenheimer T. A primary care home for Americans: putting the house in order. JAMA 2002;288:889-893.
 
11. Weedon D, Carbone P, Bilder D, et al. Building a person-centered medical home: lessons from a program for people with developmental disabilities. J Health Care Poor Underserved 2012;23:1600-1608.
 
12. Drotar DD, Strum LA. Interdisciplinary collaboration in the practice of mental retardation. In: Jacobson JW, Mulick DC, eds. Manual of Diagnosis and Professional Practice in Mental Retardation. Washington, DC: American Psychological Association, 1996.
 
13. 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, MD: Agency for Healthcare Research & Quality; 2012.
 
14. 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;11:80-83.
 
15. Martin S, Kelly G, Kernohan WG, et al. Smart home technologies for health and social care support. Cochrane Database Syst Rev 2008;4:CD006412.
 
16. Boisvert M, Lang R, Andrianopoulos M, et al. Telepractice in the assessment and treatment of individuals with autism spectrum disorders: a systematic review. Dev Neurorehabil 2010;13:423-432.
 
17. Lennox N, Bain C, Rey-Conde T, et al. Effects of a comprehensive health assessment programme for Australian adults with intellectual disability: a cluster randomized trial. Int J Epidemiol 2007;36:139-146.
 
18. Cassidy SB, Allanson JE, eds. Management of Genetic Syndromes. 3rd, ed. Wiley-Blackwell: Hoboken, NJ, 2010.
 
19. AAIDD Ad Hoc Committee on Terminology and Classification. Intellectual Disability, Definition, Classification, and Systems of Supports. Washington DC: American Association on Intellectual and Developmental Disabilities; 2010.
 
20. Curry CJ, Stevenson RE, Aughton D, et al. Evaluation of mental retardation: recommendations of a Consensus Conference: American College of Medical Genetics. Am J Med Genet 1997;72:468-477.
 
21. Rimmer JH, Yamaki K. Obesity and intellectual disability. Ment Retard Dev Disabil Res Rev 2006;12:22-27.
 
22. Bhaumik S, Watson JM, Thorp CF, et al. 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):287-298.
 
23. Evenhuis HM, Sjoukes L, Koot HM, et al. Does visual impairment lead to additional disability in adults with intellectual disabilities? J Intellect Disabil Res 2009;53:19-28.
 
24. Owens PL, Kerker BD, Zigler E, et al. Vision and oral health needs of individuals with intellectual disability. Ment Retard Dev Disabil Res Rev 2006;12:28-40.
 
25. Lewis MA, Lewis CE, Leake B, et al. The quality of health care for adults with developmental disabilities. Public Health Rep 2002;117:174-184.
 
26. 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.
 
27. Morad M, Nelson NP, Merrick J, et al. Prevalence and risk factors of constipation in adults with intellectual disability in residential care centers in Israel. Res Dev Disabil 2007;28:580-586.
 
28. Bohmer CJ, Klinkenberg-Knol EC, Niezen-de Boer MC, et al. Gastroesophageal reflux disease in intellectually disabled individuals: how often, how serious, how manageable?. Am J Gastroenterol 2000;95:1868-1872.
 
29. Kitchens DH, Binkley CJ, Wallace DL, et al. Helicobacter pylori infection in people who are intellectually and developmentally disabled: a review. Spec Care Dentist 2007;27:127-133.
 
30. Leslie WD, Pahlavan PS, Roe EB, et al. Bone density and fragility fractures in patients with developmental disabilities. Osteoporos Int 2009;20:379-383.
 
31. Jaffe JS, Timell AM, Elolia R, et al. 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):457-462.
 
32. Zylstra RG, Porter LL, Shapiro JL, et al. Prevalence of osteoporosis in community-dwelling individuals with intellectual and/or developmental disabilities. J Am Med Dir Assoc 2008;9:109-113.
 
33. Janicki MP, Davidson PW, Henderson CM, 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):287-298.
 
34. Kapell D, Nightingale B, Rodriguez A, et al. Prevalence of chronic medical conditions in adults with mental retardation: comparison with the general population. Ment Retard 1998;36:269-279.
 
35. 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.
 
36. Ball SL, Holland AJ, Treppner P, et al. 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.
 
37. Wilkinson JE, Culpepper L, Cerreto M. Screening tests for adults with intellectual disabilities. J Am Board Fam Med 2007;20:399-407.
 
38. Deb S, Kwok H, Bertelli M, et al. International guide to prescribing psychotropic medication for the management of problem behaviours in adults with intellectual disabilities. World Psychiatry 2009;8:181-186.
 
39. Tsiouris JA. Pharmacotherapy for aggressive behaviours in persons with intellectual disabilities: treatment or mistreatment? J Intellect Disabil Res 2010;54:1-16.
 
40. Tyrer P, Oliver-Africano PC, Ahmed Z, et al. Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: a randomised controlled trial. Lancet 2008;371:57-63.
 
41. Hassiotis A, Barron DA, Hall IP. Intellectual Disability Psychiatry: A Practical Handbook. Hoboken, NJ: Wiley, 2009.
 
42. 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.
 
43. 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):239-247.
 
44. Brown I, Percy ME. A Comprehensive Guide to Intellectual and Developmental Disabilities. Baltimore, MD: Brookes Publishing, 2007.
 
45. van Schrojenstein Lantman-de Valk HM, Walsh PN. Managing health problems in people with intellectual disabilities. BMJ2008;337:a2507.
 
46. Hemmings CP, Gravestock S, Pickard M, et al. Psychiatric symptoms and problem behaviours in people with intellectual disabilities. J Intellect Disabil Res 2006;50(Pt 4):269-276.
 
47. Dosen A, Day K. Treating Mental Illness and Behavior Disorders in Children and Adults with Mental Retardation. 1st ed. Washington, DC: American Psychiatric Press, 2001.
 
48. Pfister AA, Roberts AG, Taylor HM, et al. Spasticity in adults living in a developmental center. Arch Phys Med Rehabil 2003;84:1808-1812.