|
mid all the talk of the “graying of America,” little has been said about the impact this change will have on sub-populations, including people with developmental disabilities such as Down syndrome, cerebral palsy and other lifelong conditions. People with such conditions are living longer, and soon those without serious medical complications could experience life spans similar to the general population, said Philip Stafford, director of the Center on Aging and Community at the Indiana Institute for Disability and Community (IIDC) headquartered at IU Bloomington.
The average age of death for someone with Down syndrome, for example, was 31 years in the 1960s, compared to 56 in the mid-1990s. Many current parents were told that their children with such developmental disabilities would precede them in death. Thus, the parents may have done little planning for the future housing needs of their adult children, Stafford said. As a consequence, the death or incapacity of an aging parent often precipitates a crisis in housing. This situation can result in the institutionalization of the adult child, when advanced planning might have enabled a more independent, less institutional and less costly living situation.
In Indiana, more than 15,000 adults with developmental disabilities live with aging caregivers. “In the next 20 years, a large number of these individuals will be on their own,” Stafford said. “This also means they will be able to continue contributing to the community as most retirees do.”
The quality of life they will experience depends on the families’ and the state’s ability to plan well and develop a system of support. Yet, 10,000 people in Indiana are already on waiting lists for community services not currently available, according to the Arc of Indiana, an advocacy group for people with mental retardation and related disabilities, and their families. With state budgets strapped, families must step in with well-thought plans addressing a broad range of issues.
Here are steps that can be taken to help plan for a loved one’s future:
• Look for opportunities to begin a frank discussion about death and what it means to the family.
• Create a file that will contain your emergency planning guide, which describes the adult child’s goals, lifestyle, health needs and preferences.
• Author advance directives for yourself and with/for your adult child, such as living wills, health-care proxies and Do Not Resuscitate Orders, according to your beliefs and values and those of your adult child.
• Consult financial advisers familiar with the field to assure the adult child the benefits of an estate through the creation of a trust or other tool.
• Investigate the growing opportunities for supported, independent housing, including home ownership for persons with developmental disabilities.
• If the role of siblings will change, fully include them, and, of course, the individual with a disability, in the planning discussions.
On April 21-22, the IIDC and Self-Advocates of Indiana will hold a statewide conference to address this issue. The conference, which requires pre-registration, will offer a “family track” designed for siblings and older parents of individuals with developmental disabilities. For information, contact Lora Wagers at 1-800-825-4733 or go to this Web site:
http://www.iidc.indiana.edu/cac/
|
