Area Agency on Aging Outreach and Assistance for Households with Older Carers of an Adult with a Developmental Disability

Abstract

A demonstration project was undertaken in the state of New York to assess how area agencies on aging (AAAs) would approach outreach and direct aid to families caring for someone with a developmental disability. It was found that AAAs organized their outreach and direct-aid efforts using three main approaches: direct operation, contract operations, and multi-organizational. They generally organized staff time so that about two days per week of effort was devoted to undertaking outreach activities, conducting community education, and providing casework and referrals for target families. Four major distinctions were identified that differentiated work with older carers of persons with a developmental disability from that with other kinds of carers: complexity of problems presented by households identified, vagaries of fiscal resources, diverse household composition, and planning for eventualities. It was concluded that targeting AAAs for outreach and providing help to these carers was effective and productive and should be replicated throughout the United States.

Older and Younger Family Caregivers of Adults With Intellectual Disability: Factors Associated With Future Plans

“…These family caregivers have traditionally provided lifelong caregiving for the person with intellectual disability; nonetheless, they are often ignored by the formal service systems and are highly likely to be out of touch with the formal support services that are available (Bigby & Ozanne, 2004;Haveman, Berkum, Reijnders, & Heller, 1997;Janicki, McCallion, Force, Bishop, & Lepore, 1998;Walker & Walker, 1998). Hong et al's (2001) study compared aging mothers over and below 65 years old and found that younger mothers were more likely to have a larger social support network and to receive more emotional support.…”

A scoping review to characterize bridging tasks in the literature on aging with disability

“…Examples of bridging tasks that were being discussed currently in practice were mandated joint planning initiatives between sectors [24], specific personnel such as registered nurses in ID who have the capacity to bridge aging and ID [36], and funding for cross-disability research and training centers on aging with a disability [64]. Bridging tasks reviewed in original research studies included pilot projects involving joint programming between disability services client and aged care residents [34,47], a palliative care educational program for staff caring for those with Intellectual Disabilities [37], and area agencies incorporating linkages with Developmental Disability agencies [46]. Examples of bridging tasks that were being called for were policy development and funding mechanisms covering aging and disability housing services, to enable aging in place for those with I/DD [26], training across staff regarding physical, cognitive and social changes in older adults with disabilities [8,39] and collecting data from individuals aging with disability to determine unmet needs and identify best practices [7].…”

“…The primary stakeholder group discussed was the Administration for Community Living in the United States, responsible for interpreting and developing policies pertaining to services for older adults and individuals with disability [55,57]. The legislation most frequently discussed to facilitate bridging was the Older Americans Act in the United States and specifically the different amendments to the act at the end of the twentieth century, which authorized state funding for older adults with disability services, and required greater collaboration between agencies serving older adults and those supporting individuals with disability [46]. No studies evaluated outcomes of the bridging activities in the policy domain, however, policy implementation was noted to drive other bridging tasks in the health care and social services domain including, collaboration and planning across aging and disability services to support service development with the goal of enabling older adults and those with disabilities to fully participate in their communities [24].…”

“…Aging in place [26], improving access to or the quality of care [29,50], improving inclusion or participation of individuals with disability [25,27,30], and service coordination [35] were outcomes mentioned, or suggested implicitly when describing the bridging tasks. Importantly some authors noted that many of the bridging tasks occurring in health or social service delivery were time limited, small scale projects led by individuals or teams (thus occurring at micro or meso levels) [46,47], and this was attributed to the lack of an overarching policy framework regarding aging with disability.…”

Family Quality of Life and Older Families

“…Some evidence suggests that older families are reluctant to plan for the future, resulting in a crisis-oriented move for the relative with an ID, financial woes, and unexpected dilemmas for siblings or extended family (Heller, 2001). They may also be unknown to ID services (Janicki, McCallion, Force, Bishop, & LePore, 1998) and may come forward only in times of desperate need. To address these issues, models of futures or permanency planning have evolved.…”