by Mary Keen
The challenges that arise as one ages can be complicated. But for aging adults who have children with disabilities, they are often multiplied. They have cared for their adult child all of their lives, but now they, the parents, are aging and have issues of their own to contend with. Also the fear and concern about who will be the future caregiver of their child with a disability can add another layer of stress and emotional pain.
Take the case of a widowed mother, age 87, living with her 60-year-old adult son with a developmental disability. He is receiving Social Security Disability Insurance/Medicare and Medicaid benefits, and a special needs trust is in place, but the mother has no idea how to implement it. As long as things are all right at home, the mother is not motivated to plan for her son’s future residential needs. She assumes he’ll get what he needs from the state when their needs change. What is wrong with this picture?
First, there is misinformation and misunderstanding about what services are really available. Secondly, emotional issues come into play. This mother cannot even think about finding future care for her son. Her life and identity has been tied up with his for so long that their needs are entangled. It distresses her to think about his difficulty in adapting in a new environment, or a program’s inability to provide for his many needs. She will lose the company of the one whom she has centered her life around for many years.
This scenario is played out all over the country. Statistics show that more than three fourths of older adults with disabilities live in the community with aging parents. And the number is sure to grow as boomers and their children age.
CJE’s unique program called Linkages can help to moderate concerns like the ones this mother faced. One of only a few programs like it in the country, and the only one for older adults in Chicago, Linkages was originally formed because a remedy was needed to reduce the potential institutionalization or homelessness of adult children with disabilities and to give support to their aging parents.
Started with a Jewish Federation grant in 1995, Linkages works with Federation-affiliated and other agencies (CJE SeniorLife, Jewish Children and Family Services ( JCFS), Jewish Vocational Services ( JVS), Keshet, The ARK, Rehabilitation Research and Training Center (RRTC) on Aging with Developmental Disabilities at University of Illinois at Chicago and Center for Independent Futures) to assist families and to provide as comprehensive a support network as possible.
Headed by Rosann Corcoran, L.C.S.W., CJE’s Linkages program provides information, support and referral services to help families deal with their present needs as well as to assist them in planning for the future. This is historically a challenging task but recently has been made more difficult due to the evolving system- wide changes in the delivery of social services to older adults and people with disabilities. With a state system that is finally changing its focus to community services from institutional services, families and service providers are scrambling to understand how this will impact people needing and depending on these services.
Corcoran’s most frequent request for help involves navigating the complicated procedures and requirements for obtaining services and support. Clients requesting benefits for the first time come to her and do not know where to start.
Another “hot” topic is estate planning. Corcoran says the most common questions she gets from 60- to 80-year-olds are: “What will happen to my child with a disability? Where will he or she live? Who will make all decisions that I’ve been making for him or her? How should I set up my finances so my child is provided for? What benefits are available to my child?” She continues: “We help families become as knowledgeable and informed as possible about future planning issues, including the possibility of setting up a Special Needs Trust,” and, she adds, “Of course we provide them the information and referrals they’ll need to do that.”
Most of Corcoran’s work is done coaching people on the phone, educating people on what they have to do and helping them find things out. Exclaims Corcoran, “I can’t count the number of times I’ve referred someone to CJE’s Consumer Assistance Resource Specialists!” In addition, Linkages participants can become more familiar with these issues by attending the Linkages support group or by attending monthly information meetings with speakers on topics they need. (See inset for full list of Linkages services.)
To better facilitate the emerging changes in the social service system, a network of referral agencies is being set up by the Federal government and the State of Illinois known as Aging and Disability Resource Network (A.D.R.N.).
CJE SeniorLife will participate in this referral network by serving as an A.D.R.N. for the Niles Township area. This anticipated improvement and coordination of referrals and services might mean fewer clients for Linkages. But, as Corcoran says wistfully, “I’d love to be needed less.”
Need Help? Ways to Connect with Linkages
Parent Support Group
Monthly Information Meetings
Connections Quarterly Newsletter
Linkages at www.cje.net
For more information, please contact Rosann Corcoran, Clinical Supervisor and Linkages Coordinator, at 773.508.1694, or at firstname.lastname@example.org(link sends e-mail).