PEARLS
■ Most adults with early-onset disabilities are healthy with aging. Significant or acute loss of function should not be expected, and evaluation must ensue.
■ Adults with early-onset disabilities view themselves as healthy, although this is dependent on the number of health conditions.
Life satisfaction is usually not associated with disability. This is within the context of measurement instruments that have not been standardized for those with disabilities.■ Urinary/renal issues for adults with childhood-onset SCD are of primary concern. However, management of pressure ulcers and lymphedema can be most problematic.
■ Consider newer tone management options to manage pain or improve function, with concomitant therapy. With decreased tone, additional focused therapy can improve function.
■ Pain is common in adults with childhood-onset disabilities. All pain is not arthritis, and there can be many etiologies. Never miss the opportunity to question, evaluate, diagnose, and treat. Although most pain is musculoskeletal in origin, if there is no improvement, consider neurologi- cally based etiologies, such as stenosis, tethering, or entrapments.
■ Exercise can improve performance, and any person with a disability can participate, with modifications. Do not just consider therapy—home- and community-based programs can be effective.
Best Resources
Alexander LM, Bullock K, Maring JRPT. Challenges in the recognition and management of age-related conditions in older adults with developmental disabilities. Topics in Geriatric Rehabilitation: Aging With a Developmental Disability. 2008;24:12-25.
Dicianno BE, Kurowski BG, Yang JM, et al. Rehabilitation and medical management of the adult with spina bifida. American Journal of Physical Medicine & Rehabilitation. 2008;87:1027-1050.
Field MJ and Jette A, eds, Institute of Medicine (IOM).
The Future of Disability in America. Washington DC: National Academy Press;2007.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;46:287-298.
Kemp BJ, Mosqueda L, eds. Aging with a Disability: What the Clinician Needs to Know. Baltimore, MD: The Johns Hopkins University Press;2004.
American Paraplegia Society. J of Spinal Cord Med. 2002;24(4).
Tosi L, Maher N, Moore DM, Goldstein M, Aisen ML (editors). Adults with cerebral palsy: papers presented at a workshop to define the challenges for treating and preventing the secondary musculoskeletal and neuromuscular complications in this rapidly growing population. Developmental Medicine & Child Neuro. 2009;51(Suppl. 4).
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