OLR Report 2014-R-0040 answers the question: What initiatives have been developed in Connecticut and other states to assist elderly parents of intellectually disabled persons?
In Connecticut, the Department of Developmental Services (DDS) has a unit that provides services for DDS clients as they and their caregivers age. However, the unit focuses on the client and does not provide services specifically for the clients’ parents, other than respite care, primarily because Medicaid does not pay for these services.
We only found a few initiatives in other states specifically designed to assist elderly parents of intellectually disabled persons. Indiana had a small pilot project to demonstrate how Web-based social media could be used to bridge informal and formal systems of care supporting adults with intellectual disabilities and family caregivers.
Kentucky adopted legislation requiring its equivalent of DDS to establish a centralized resource and referral center for aging caregivers. But the mandate is tied to the availability of funds and the center has not been established to date.
In 2000, Ohio commissioned focus groups to gain more information about aging caregivers of people with intellectual disabilities and the challenges they face.
In addition to these initiatives, a number of organizations have developed materials to help aging caregivers of people with intellectual disabilities. Examples include Planning for a Good Life, produced by the ARC of Massachusetts (an advocacy group) and Aiding Older Caregivers of Persons with Intellectual and Developmental Disabilities, published by the Center on Intellectual Disabilities at the University at Albany.
A federal program provides grants to state aging agencies to support a range of caregivers, including those that care for persons with intellectual disabilities under limited circumstances.
For more information, read the full report.