Prader-Willi Syndrome  Hypogonadism- low hormonal levels.  Problems related to uncontrolled obesity Cardiovascular Diabetes Fragile X Syndrome Increased rates of mitral valve prolapse Musculo-skeletal disorders Early menopause Epilepsy Visual impairments. Earlier osteoporosis How does aging affect persons with seizure disorders? Seizure Disorders Change in seizure frequency, increase or decrease Cumulative effects of long term use of seizure medications  Decreased bone density and increased trauma and falls due to seizures may lead to fractures What are some service delivery models or recommendations available to assist persons with Developmental Disabilities who are aging? Service Delivery Models Aging in place- adaptation as client needs, abilities and behaviors change. Dementia-specific environment-specialized staff and setting. Referral out, usually to long-term care facility or other generic community programs. Programs and Services “Dual aging,” the aging of persons with developmental disabilities as well as that of their caregivers (family members and paid staff members) will continue to put more demands on the service system. The need for services and the length of time these services need to be provided can be expected to increase. Thus far, increased flexibility in funding has not always been followed by increased flexibility in services. For example, retirement options have been designed for this population in senior centers and social adult day care. However, retiring also means being able to stay at home and take it easy from time to time. The latter is not possible under the current system. Also, many current staffing patterns are not designed to provide coverage in an agency residence during daytime hours. Activities in day programs for persons with developmental disabilities are still not always age-appropriate for an older clientele. Many people continue to be exposed to the same curriculum that they followed when they were younger. This does not do justice to the concept of treating older persons with developmental disabilities with the dignity they deserve. There is a need for increased flexibility in service delivery as well as a continued emphasis on creative design of these services. Continued training needs to be provided to alleviate the effects of staff turnover and to bring the latest information from gerontology and geriatrics to the field of developmental disabilities. Cross-training to aging services providers about developmental disabilities also needs to continue. Caregiver Issues There will be more families who are caring for an older person with a developmental disability. These families will provide this care for a longer period of time. There will be an increase in multigenerational caring (grandparents caring for adult grandchildren with a developmental disability). More families from different cultures will be identified who will present a challenge to the mainstream service systems. There will be more aging caregivers who are becoming too frail to provide care for their adult sons or daughters. More families will age who have had positive experiences with the service system and who will expect that service system to meet their needs as they age. Long term planning efforts need to be responsive to these families and work with them in ways that meet their specific needs. Specialized outreach training needs to continue, using caregivers’ day-to-day expertise as a resource. Family support programs need to be expanded that are individualized and can be tailored to the individual situation of each family that provides care for an older adult with a developmental disability. In some situations, the older person with a developmental disability may be providing care for the “caregiver” and this needs to be taken into consideration when planning for family assistance. • Caregivers need to be able to request the specific services they need for the particular problem they are facing. • Agency personnel need to include older caregivers in their planning process. • Families need to receive services allowing them to remain functioning with their developmentally disabled son or daughter at home. • Residential placements designed for older parents (i.e., nursing homes, assisted living homes, etc.) should make provisions to accept placement for their adult sons or daughters if needed. • Agencies providing services need to be culturally sensitive and be able to work with local cultural provider agencies. References and Resources An excellent source for books, journals, and fact sheets on older adults with mental retardation and other developmental disabilities is: Clearinghouse on Aging and Developmental Disabilities Dept. of Disability and Human Development Univ. of Illinois at Chicago, 1640 W. Roose velt Road, Chicago, IL 60608-6904 (800) 966-8845 http://www.uic.edu/orgs/rrtcamr/ Other Selected References Davidson, P. W., Prasher, V. P, & Janicki, M. P. (2003). Mental health, intellectual disabilities and the aging process. Oxford, UK: Blackwell. Davis, S. (2003). Family Handbook on Future Planning. Washington, DC:The Arc.Janicki, M.P. & Dalton, A.J. (Eds.) (1999). Dementia, Aging, and Intellectual Disabilities: A Handbook. Philadelphia: Brunner-Mazel. Prasher, V. P., & Janicki, M. P. (2002). Physical health of adults with intellectual dis abilities. Oxford, UK: Blackwell. Seltzer, M. M. (Guest Ed.). (2004). Websites for National Disability Organizations American Association on Mental Retardation Home page for AAMR, the national organization for professionals and others interested in the field of mental retardation. National Association of Developmental Disabilities Councils The Arc of the United States The national organization of and for people with mental retardation and related disabilities and their families. Arc's official publications and video resource web site. National Down Syndrome Society Home page for this national organization on Down syndrome. Includes information on inclusion.