Barbara Quirk: Providing for adults with disabilities

Barbara Quirk  —  11/10/2008 5:38 am

The story comes from my hometown in southern Indiana, but I am sure it is being repeated in some form in every corner of this country. It is the saga of children who were born with or developed disabilities and who have now reached maturity or, perhaps, even old age themselves. In our case, it is the mother of an adult son, who was cared for at home for many years. We are distantly related, so there is concern.

As an infant, and throughout all formative years, this son had multiple seizures. The mother stayed at home to care for this child and her other children. Eventually the decision had to be made to "place" the now middle-aged man into a facility that could care for him, hopefully for the rest of his life.

Now, several years later, all of the other children have left home. The father has passed away and the mother, age 80, can barely function. She rarely speaks and is living alone in what appears to be her own world, wherever that may be.

The cruelest joke of all is that funds for facilities such as her son's, as well as supportive home care, are being threatened in many states, including Wisconsin. Long waiting lists for services are forming. For an elderly parent who believes they have made the best choices for their adult children, having to face the possibility of new or different arrangements may be beyond their capabilities.

This is a growing problem. In the U.S., there are an estimated 641,000 adults aged 60 and older who have developmental or intellectual disabilities. These disabilities include mental retardation, cerebral palsy, autism, and epilepsy. These numbers do not yet include disabilities that are the result of trauma, such as young adults returning from armed conflict.

Experts in the field of disabilities agree that estate planning is the key component for planning for the time when the person cannot or should not remain in the care of an aging parent. To ensure that the caregiver's desires are carried out, wills and trusts must be established.

A friend of mine just recently went through the legal process of gaining guardianship of her 18-year-old daughter who has autism. It was difficult for my friend, who until now could make the decisions that needed to be made without question. The reality that her daughter may never be capable of making her own decisions was brought home. Ending are the years when her daughter could attend school, giving some sense of progress and normalcy. It is an incredibly sad time, as it must be for all parents reaching such a juncture.

"Here is the thing," my friend said. "I have raised this child. I know her better than anyone. I know what she responds to positively and those things that set her off. How can I turn her care over to strangers?"

Historically, children were kept at home, some virtually hidden from neighbors and friends. Many parents were advised to "put them into a home," and shortly after birth the mother and child were separated. One can only guess at the sadness and at the lost potential.

Gradually, over the years, families of children with disabilities became organized and became strong advocates for their own and other's children until they became a powerful, effective force. Siblings, relatives and family friends joined the effort and supportive services were developed that allow the child/adult with disabilities to remain in their homes and communities.

Other supportive options are being developed, such as work programs and adult day care programs that integrate the person and provide respite for the caregivers.

The Olmsted Act, passed in 1999, and Title II of the federal Americans With Disabilities Act dictate that the state, wherever possible, place people with disabilities in a community and in the most appropriate setting rather than in an institution.

Using these legal protections, families can piece together plans for their loved ones. With the help of knowledgeable professionals in the legal system, they can trust that their wishes for their adult child will be carried out.

Barbara Quirk is a Madison geriatric nurse practitioner.

Barbara Quirk  —  11/10/2008 5:38 am