(John Foley comments continue.)

“Emerging is a picture that calls for action by state and local chapters of The Arc. State and local service and support systems are falling behind in even knowing the scope of the need that exists in our communities. Not so many years ago, if someone with an intellectual or developmental disability needed service just dropping them off at the door of an institution resolved the problem. All that remained to be done was to add another bed in one of the buildings and bingo, the problem was dealt with. That is no longer true as those terrible days of warehousing are coming to an end—though some state bureaucracies cling with a death grip onto the bricks and mortar in a pastoral setting.

There are no easy solutions and there never have been. But these are problems that are a constant for the aging caregiver who is alone and unsupported trying desperately to support their adult child at home. Many are women whose spouse has died and now face an uncertain future supporting an adult becoming increasingly dependent upon a struggling aging care giver. These parents were committed to their family member and vowed to take care of their own, an admirable outcome.

The Wall Street Journal of April 29, 2008 detailed the story of a seventy-nine-year old mother who was admitted to the hospital. With her hospitalization came the matter of care for her 41-year-old son who has Down Syndrome; it was determined that he would have to stay with her at the hospital. A semi private room for them both soon went south when the mother went into respiratory arrest which meant the son has no place to go. A hospital employee intervened and took the son into her home on a temporary basis; however the son then needs medical care and hospitalization. What will happen when his temporary housing comes to an end and no services are available?

I want to suggest that this emerging phenomenon of the growing needs of an aging population is a new challenge to the advocacy of The Arc at all levels. It appears clear that new appropriations to serve those on the waiting list will not be there. Several states have had partial success; in others the slide has been into reverse as cash strapped states struggle under the weight of a federal government shifting cost burdens to the lowest level. We can speculate what is driving this downward movement. I would suggest the federal government is tending to other fiscal commitments and as such are quite literally placing the burden of caring for their son or daughter on the backs of mothers and fathers who were once active members and leaders of The Arc. They are the ones that held bake sales, held benefit dinners and on and on. They were the heroes of
The Arc then and they have every right to expect something in return for their efforts to build a better world for all of their children with disabilities.

The Arc at all levels are being called upon now more than ever to renew the commitment to insure that all persons with intellectual disabilities and their families are receiving the supports and services they need to live happy and productive lives. Chapters of The Arc are called into an advocacy relationship with all persons with needs be it quantity or quality. We should be reminded that The Arc was born out of the needs of persons with disabilities and their families. I want to submit to you that the need is still there.”