Important care options for disabled being ignored

Posted by Prema Polit at 3:54 PM on January 30, 2007.

Recently the Oakland Tribune ran an article by Michele Marcucci that rehashes the squabble about closing state institutions for people with developmental disabilities and wrongly implies that these large, outdated institutions can offer the essentials of care that only community services can give. Both community homes and large institutions are capable of caring for the medical and physical needs of residents, but only in the community setting can people with disabilities experience all that life has to offer.

"It's a battle that has been brewing for decades: community care versus institutional care," Marcucci writes.

True enough. But it's the wrong battle. The more energy, time and money that both sides of this fight expend on trying to win it, the less is devoted to the real needs of people with developmental disabilities.

My older brother is severely mentally retarded and has behavioral problems. When he was thirteen and becoming increasingly unmanageable, my parents despaired over how they would continue to care for him. Their case manager told them that if they could not continue to care for him at home, their only choice was a developmental center, a large state institution. But they had heard of an after-school program that he could attend, which would give them some precious hours for work and taking care of their two young daughters. They decided that they could keep him at home. Many families did not have that choice in the eighties.

Though growing up with my brother was not easy, I am grateful that my parents managed to keep him out of an institution. When I visited the Sonoma Developmental Center eight years ago and imagined him confined within those walls, I finally understood the great contrast between institution life and the life that my brother has been able to have.

He now attends a day program for adults with developmental disabilities. He is in a small group that travels around in a van and does activities ranging from exploring a park to learning work skills. My brother meets all sorts of people, he discovers new places and he indulges his love of music and airplanes.

Institutions in their basic nature limit the life experiences and choices of people with disabilities. Often, even very medically fragile and/or profoundly mentally retarded people can live fully, make personal connections to other human beings, and benefit from the diverse experiences that living in the community offers.

Now, providing services in the community is the general rule, and these services have been growing and improving. Yet some family members of people with developmental disabilities and workers in the developmental centers are clinging to a system that has no future -- nor should it.

Most developmental centers are in need of major, pricey repairs, and they cost more than community services in the first place. Although only 1.2 percent of Californians with developmental disabilities live in developmental centers, 17 percent of the state developmental services budget goes to developmental centers.

The longer people misguidedly try to preserve the existence of these institutions and oppose moving residents out, the longer community services will suffer for lack of funds and trained staff. The care providers are paid woefully little (they aren't unionized), which makes it impossible to retain staff over long periods of time. Because of lack of funds, workers may not be properly trained, and if there is constant worker turnover, few people may know the clients or what is going on at all.

The sad story in the Oakland Tribune of the death of Donald Santiago may have been a part of these issues. But note that buried at the end of the article is something important: "Burton said that over the last 19 months -- roughly the time Santiago lived at Justin's Home -- five of the 64 clients his agency served at Agnews died of pneumonia." People with disabilities often die of pneumonia, whether in institutions or the community -- this is not news.

A proposal: Instead of spending all this energy on fighting to keep people in institutions, spend it on working with the regional center to create a quality place and program specifically tailored to a person's needs and personality. Help provide a more fulfilling life than one could ever find behind the walls of an institution.

Tagged as: developmental disabilitie, disability rights, institutions, funding