Aging and Transitions Project
Project Description:
Eighty-eight percent of individuals with developmental disabilities in Arizona reside with a family caregiver or spouse, or have their own households. There are 16,000 individuals in Arizona who reside with family caregivers in what the authors call an "informal system of residential care." Nationally, 35% of these family caregivers are age 41-59 and 25% are over age 60. Although Arizona's large number of individuals with DD living in community settings impacts quality of life issues positively, it has another important, sometimes forgotten, implication. As caregivers enter middle age, it becomes critical that they consider the future needs of their loved ones as they become less able to provide the necessary care and support. The data indicates that there may be up to 5,600 Arizona families who should be planning for this transition. The number of persons over age 65 is expected to more than double in the next 30 years meaning that demand for services for people who reside with aging family caregivers will significantly increase.
The Aging & Transitions Project is twofold - including both a community aspect and research:
Opportunities for Older Adults with DD (Meaningful Day): The concept of a meaningful day includes the provision of substantive and sustained opportunities for people with developmental disabilities to engage in lifelong learning; make choices about their day; develop new relationships through community inclusion; and be seen in the community participating in the same activities in which others engage. One way to achieve this is to bring the two systems of aging and disability together to benefit from the experiences and expertise of each. Preliminary contact with an Area Agency on Aging reflected a strong interest in fostering a closer collaboration between the aging and disability system through the development of a new model of inclusion and integration in the community for persons with disabilities. This will be accomplished by the following activities: 1) identify one to three model programs that serve the aging population; 2) identify components applicable or that can be adapted for older persons with DD; and, 3) develop collaborations through the design of a pilot project using peer mentors where older adults with DD can attend a community senior program.
The Older Adults research project will evaluate participant needs in developing the projects, participant satisfaction with the pilot project, and program planners' perception of the collaboration process. The Aging and End of Life evaluation will include multiple activities during the project's implementation. An initial needs assessment of hospice programs statewide will determine areas of concern and issues programs have encountered. All tools created will be pilot tested with a small cohort of individuals with disabilities as well as caregivers to determine clarity, ease of use, and cultural sensitivity. The caregiver survey will be designed and circulated to three colleagues involved in providing end of life care in order to collect feedback about clarity, usefulness, and methodology.
Future Planning Project (2016) examines the experiences of adults with disabilities, families, and service/support professionals as they support each other during various life transitions and the future planning process. Research methodology includes an online survey for family caregivers and service/support providers and interviews with persons with disabilities and their family. Project outcome is a revised edition of the Future Planning Roadmap.
Keyword(s):
aging caregivers , life transitions, end of life, future planning
Core Function(s):
Performing Research or Evaluation, Developing & Disseminating Information, Continuing Education/Community Training
Area of Emphasis
Quality Assurance, Health-Related Activities, Quality of Life, Other
Target Audience:
Students/Trainees (long or intermediate trainees), Community Trainees / Short term trainees, Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities
Unserved or Under-served Populations:
Racial or Ethnic Minorities, Geographic Areas, Reservation, Rural/Remote, Urban, Specific Groups, Other
Primary Target Audience Geographic Descriptor:
State, National
COVID-19 Related Data:
N/A
