Untapped: The Need to Blend the Systems of Care

Untapped: The Need to Blend the Systems of Care

Adults with a developmental disability are experiencing an extended old age, and concerns have been raised that their increased longevity has created a demand for services and special attention that localities are ill-prepared to address .  The likelihood of aging persons with a developmental disability living into retirement years and outliving family carers has increased.  This has created a growing need for services and resources for family carers, which have remained largely unplanned.  Further, identification of the needs of older carers and how they can be addressed have not received the attention that workers in the field have indicated they should Aging family carers of persons with a developmental disability are one segment of the aging population which has recently begun to receive systematic attention from community agencies.  These families have traditionally provided a lifetime of caregiving for the person with a disability, often without help from formal service systems.  Now as they themselves are aging, social services and aging agencies are becoming more aware of their existence and circumstances.  Concerns are raised about what kinds of supports they may need, what kind of future caregiving arrangements will be needed when these carers are no longer able or available to provide care, and how agencies may be able to respond to their needs.  Services found within the aging network are increasingly being asked to provide services for this population, and to coordinate their services with those provided by developmental disabilities service agencies.

Financial and quality-of-care-issues are reasons why aging and developmental services agencies should be addressing these concerns.  The lack of attention by the formal service system and the reluctance of families to seek out assistance together conspire to create crises for these families.  When a caregiving parent dies or becomes too ill to continue care, formal agencies are likely to be asked to provide out-of-home care on an emergency basis.  Prior engagement with families, planning their needs, and cooperation among service agencies are more likely to result in the use of less costly and less disruptive service options. 

Three issues make this a population of concern.  First, medical advances have steadily reduced pre and post-natal mortality rates of children even with severe developmental disabilities, increasing their numbers generally.  Second, reduction of past institutionalization and its avoidance today mean that most people of all ages with a developmental disability now live with their families or with community-based service providers. Exploring the lifespan implications of this increased longevity and community based living is a growing body of literature on family care of children and young adults, as well as considerations of the needs and experiences of aging parents caring for adult offspring with a developmental disability.  A particular concern is the welfare of those who are unknown to service systems or who have difficulty in accessing services when they need them. 

A  reasonable question is, to what degree do aging families providing services to older adults with Intellectual Disabilities (ID) pose different demands or challenges for the aging network?  Knowledge of such distinctions can be helpful for both developing the aging network plan and for designing aging network  outreach and services approaches.  Examples include the complexity of the problems that such families or households often pose.  The aging network usually encounters many typical caregiving situations (e.g., the parents or other carers who only need minimal supports, such as respite, transportation, or financial planning information).  Yet, other family situations encountered are quite complex (e.g., the parents or other carers with multiple caregiving demands, such as the elderly woman, living in a rural area, who was caring not only for her infirm husband with dementia, but also for an adult son with severe intellectual and physical incapacities).  Such situations may be typical of the more extreme problems faced by aging network when they encounter carers who have been “lost” to the disability services system.  In many instances, they pose demands on individual workers that exceeded personal and agency resources. 

The challenge is to now determine how agencies should mobilize to address the needs of families providing care to older adults with specialized needs. 

We look forward to your comments.