LeadingAge California's website is a consumer resource and link for people interested in aging services and care throughout the state
by Barbara Winters
Addressing the Need For Formal Care
Many people with developmental disabilities are reaching an age where they need support as elders at the very time they will no longer be able to count on their own parents and other aging family members to provide care. Research suggests that 60 percent of people with developmental disabilities reside with family caregivers, and another 15 percent reside with spouses. Twenty-five percent live with family members or informal caregivers who are ages 60-plus, and another 35 percent with caregivers ages 41–59. Given these statistics, a growing number of people with developmental disabilities will outlive their family caregivers.
These factors mean that people aging with developmental disabilities increasingly need additional support from the system of formal care. At the same time, organizations and enterprises working to meet the needs of this population while serving older adults or people with disabilities in general will find that a one-size-fits-all approach doesn’t work. Serving older adults who have developmental disabilities requires not only recognition of the needs they share with all other elders and all other people with disabilities, but also an understanding of the uniquely complex circumstances of theirlives.
Fortunately, service providers are already familiar with the health concerns which elders with developmental disabilities share with all other older adults. Arthritis, heart disease, diabetes, dementia and other conditions which have secondary effects on functioning are common in both populations. What may differ is the reaction: People with developmental disabilities often have worked very hard to achieve and maintain a certain level of independence, so when age brings functional decline, the psychological impact is perhaps even more profound than it is for other elders. Providers may therefore see a higher rate of reactions such as aggressive behavior or suicide among elders with developmental disabilities.
The support needs of elders and people with disabilities are increasingly being addressed in combined settings in the United States. This trend presents opportunities for cross-disciplinary synergies, but it also can pose challenges when it comes to designing effective programs tailored to the two specific groups. For providers who work with elders and for those who work with people with developmental disabilities, recognizing the ways in which aging and developmental disability are similar and the ways they differ is key to designing appropriate and cost-effective services.
With the increasing consolidation of services, it’s likely that all providers are going to be called on to work with clients who will have an umbrella of sometimes overlapping and sometimes differing needs and conditions; we’ll see fewer and fewer homecare providers who specialize, for example, in just serving elders with Alzheimer’s or just serving people with disabilities. As providers, we’re going to have to grow our skills in simultaneously serving a wide diversity of people with a variety of needs.
To start with, it’s vital to understand the relevant federal definition. The majority of people with developmental disabilities have lived with them since birth, either as a result of genetic variation or due to an injury at birth. A smaller group have acquired their disability between birth and age 22. The federal definition sets this age cut-off because the first 22 years of life are regarded as the key period for childhood, adolescent and young adult development of normal function in self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living and economic self-sufficiency.
One of the challenges for providers is the separation of service networks for elders and people with developmental disabilities. The professional disciplines, settings, agencies, and advocacy organizations of the two networks often reflect differences in philosophy, terminology, staffing, regulations, and interventions. Some of these divisions are a result of serving differing populations with specific needs, but they also reflect the way funding flows from separate departments and agencies in federal, state and local governments. As a result, providers of elder services and of services for people with disabilities may be operating in two distinct worlds. When we try to bring them together, we can encounter the equivalent of cross-cultural challenges.
On the developmental disability side, we must meet the overall mandates of the federal Developmental Disabilities Assistance and Bill of rights Act of 2000. We have a provider network that started with the national Association of State Developmental Disabilities Directors. Services are then implemented through such entities as state protection and advocacy agencies, state surveyors and board of health surveyors.
In both the disability-services and aging-services systems, we talk about consumer-directed homecare, but this model presumes that the individual or the individual’s family caregivers are in a position to direct the care. Those aging with developmental disabilities may find themselves at risk under this approach, as neither they nor their families may be in a position to take on the responsibility of care management.
For budgetary reasons, we’re likely to see this model fade away in any case: States will no longer be able to afford funding for Medicaid-supported, full-time individual homecare for people with disabilities. We see this happening in states where people with disabilities coming out of institutions once had a choice of receiving care while living alone or living with others. Now states are requiring individuals who need 24-hour support to live with a housemate who has equivalent needs so a single homecare worker can assist both people. For some people with disabilities, sharing a home and a homecare worker will prove a positive experience, but finding the right match may at times be challenging.
In the aging network, full-time homecare has never been available except to those who can cover the very high costs out of their own pockets. If you need that level of support, usually you are placed in an assisted living or skilled nursing facility. By contrast, in the developmental disabilities network, a variety of residential living options such as group homes and foster homes have been developed which to my knowledge don’t exist as widely in the aging network. The integration of these two sectors may therefore lead providers of services for older adults to learn about and adapt some of the models of formal care already used by providers of services for those with developmental disabilities.
Deborah Newquist is director of geriatric services and Barbara Winters is senior vice president of customer relations, both at ResCare, a national homecare firm headquartered in Louisville, Ky. Newquist is based in Costa Mesa, Calif.; Winters is based in Marion, Ind. Visit the firm’s website at www.rescare.com.
Copyright © 2010 by AARP; all rights reserved.