Information gathered the past two years from the regional workshops, open forums, and surveys of providers and agency staff indicate the need for information awareness of available community services for older persons with developmental disabilities and aging family members. They reported needs of learning and being trained in aging processes and the additional and unique needs of people in the later life years. Training on age appropriate services and how do you develop, implement and maintain those support services and programs? Training for additional interagency collaboration and networking at the local level and grant writing skills for new moneys to pay for aging services. Cross training of aging professionals on serving an aging and older population with MR/DD. Training of home health providers and rehabilitation counselors. Staff in three ICF/MR institutions have requested training and technical assistance to assist with the aging in place of some of the residents and how to access the social leisure activities in the local community. In summary of the needs expressed by all the participants, a range of categories may be developed that cover:
The main funding source in the state for MR/DD services (Ky. Division of MR) has funded only two projects to serve the aging and older population with MR/DD in the last fifteen years. The Ky. Developmental Disabilities Planning Council has aging as a priority addressed in their five year plan. The DD Council has funded demonstration projects for 3 years (1988-1990) that were not picked up by state general funds. A Subcommittee on Aging was operational from the spring of 1991 until the fall of 1993. The Subcommittee was composed of both professionals in the field of aging and mental retardation and self-advocates. Three Council members and a one council staff participated in the monthly meetings. The accomplishments of the Subcommittee on Aging included the signing of the Memorandum of Understanding between the Divisions of Aging and Mental Retardation by the Commissioners of Social Services and Mental Health and Mental Retardation in 1992 (four years after the directive from the Administrations on Aging and Developmental Disabilities in Washington, DC to fulfill the federal mandate). All identified aging and older clients in the entire state's service systems total 3603.
The majority of aging and older people with developmental disabilities are not in the available service systems. In Kentucky as like most states that have explored where their aging and older population was, aging and older people with developmental disabilities are living with aging parents, relatives, or surviving semi-independently in the community. In 1989, the Urban Studies Center, College of Urban and Public Affairs, at the University of Louisville published a survey report for the Kentucky Office of Vocational Rehabilitation citing the incidence and prevalence of people over the age of 64 years with developmental disabilities to be 60,260. These disabilities included:
The number of aging and older people with developmental disabilities reported by all agencies and service providers account for less than 10% of the incidence and prevalence reported by the Urban Studies Center for developmental disabilities over the age of 64. The following totals by agencies are for people with mental retardation and other developmental disabilities 60 years old and above:
| Nursing Homes | ICF/MR Facilities | AIS/MR Title19 Waiver | Other Community | Vocational Rehabilitation | Personal Care / Mini Homes | MH/MR Regional Boards | Senior Citizen Centers | Adult Day Care Centers | Total of People 60+ with DD Served |
|---|---|---|---|---|---|---|---|---|---|
| |
Ongoing research indicates the presence of premature aging in people with Down syndrome and Cerebral Palsy. The number of Kentuckians identified in the service systems who will be entering the aging group within the next five years is:
Down syndrome Ages 35-49 233
Cerebral palsy Ages 35-49 26
Totals 259
Aging and older persons with developmental disabilities needs included:
The Senior Citizens Center Directors expressed the following needs:
Personal care, family care and mini-home providers listed the following needs for the aging and older individuals with developmental disabilities:
1. Policy makers and program administrators must be made aware of the unique needs of the aging and older population with MR/DD in the state through information sharing and public meetings where advocates and family members could express their needs and concerns.
2. Issues concerning premature aging of person's with Down syndrome and Cerebral Palsy need to be fully explored and explained to all older family members, agency staffs and program planners and administrators.
3. Students leaving professional schools need to have up-to-date information on aging and developmental disabilities to be prepared to work with an aging population that continues to grow and demand new supports that are different and unique to the current programs being provided in community and institutional environments.
4. Improve outreach and supports through awareness efforts to older families, including under-served minority and rural families, who are caring for a relative with developmental disabilities by working with the local aging service systems, mr/dd agencies, social services, and the family resource staff in each county extension office.
1. Very few families have provided for continued support after the deaths or inability of the parents to continue day to day formal and informal supports. (For example, real estate and family homes are major resources for aging and elderly people; however, less than 12,000 elderly homeowners nationwide have used the reverse mortgage option to convert their homes into income for a fixed time period or life and stay there. Additional information must be disseminated to older home owners who are caring for their aging family members with developmental disabilities.
2. Support interagency service coordination and delivery by establishing mechanisms for funds to flow across service systems.
3. Enhance access to aging network services and programs for older adults with developmental disabilities, including individuals who experience premature aging by amending current legislation to include this population.
4. Bolster the economic security of older people with developmental disabilities by restructuring the earnings levels which reduce SSDI and SSI benefits, provide incentives for extending pension plans to adults with developmental disabilities employed in competitive and sheltered work settings, and amending laws which reduce government entitlements due to inherited assets.
1. Develop and implement training programs for MR/DD direct staff to understand the aging processes, needs of aging and older persons with MR/DD, and how to access community programs and resources in a timely way.
2. Aging family members need training in what services are available for both themselves and their family member with developmental disabilities.
3. Elderly and aging care givers need training in many different areas including wills and trusts, networking, understanding their child's aging, and accessing services and programs.
4. Provide community-based supports which enable older adults with developmental disabilities to "age in place " rather than move to a more restrictive setting.
5. Train aging and older individuals with developmental disabilities to participate to their full ability in the later life years activities and supports to access their community's resources and activities. Retirement, volunteer work, participation in age appropriate activities of their choosing are just a few of the needs for awareness and understanding by this population.
6. Improve access to health care and the quality of care for people with developmental disabilities by training health care professionals in the needs of both individuals and families. This includes both home health and skilled care staff.
7. Insure the well-being and rights of nursing home residents with developmental disabilities by providing training to the state nursing home ombudsman program and coordinating their activities with the state protective services agency.
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