Published Saturday, Jan. 26, 2002, in the San Jose Mercury News

Community care sought in suit filed for disabled
Isolation alleged: Advocates say many could live partially on their own
instead of in institutions

By Sandra Gonzales, Mercury News

Seeking community-assisted care rather than living in large facilities, advocacy groups filed a class-action lawsuit Friday against state health agencies and regional centers, accusing them of unnecessarily isolating and segregating the developmentally disabled in institutions.

Named in the suit are the California Health and Human Services Agency, the Department of Health Services, the Department of Finance and the Department of Developmental Services, which contracts with the 21 regional centers also listed in the lawsuit filed in Alameda County Superior Court.

``Plaintiffs are seeking freedom for thousands of Californians from the isolation and segregation and unnecessary institutionalization due to the lack of adequate and community support,'' said Ellen Goldblatt, an attorney for Protection and Advocacy, a non-profit agency and one of the groups that brought the lawsuit. ``California has not moved forward to reverse the trend of unnecessary institutionalization.''

Paul Verke, a spokesman for the Department of Developmental Services, said the agency had no comment because it had not received an official copy of the suit.

The lawsuit was filed on behalf of 12 people with developmental disabilities; Capitol People First, a self-advocacy organization made up of people with developmental disabilities; the California Alliance for Inclusive Communities; Arc California, an advocacy group for quality community services; and two individual taxpayers.

It seeks to represent more than 6,000 Californians with developmental disabilities and asks for a court order to require the state agencies to take the appropriate steps to help those with developmental disabilities live as part of the community rather than in large institutions.

At a news conference announcing the suit, several of those who live in such an environment told their stories.

Avery Russell, 45, whose illnesses have led to an insatiable appetite that has made his weight balloon to more than 350 pounds, lives at Agnews Developmental Center in San Jose and is a client of Far Northern Regional Center.

Though he is mildly retarded, he's able to make a living making beds and recycling cans and bottles.

Despite a Santa Clara County court order in October that the regional center move him to community care, Russell is still at Agnews.

``I want to be on my own,'' Russell said in a halting voice, adding that he wanted to be close to his family.

For Melbert Schanzenbach, 78, who has lived in Sonoma Developmental Center since 1993, the situation was much the same.

Schanzenbach, who has moderate retardation and a disease in his leg that forces him to use a walker, has not been able to move into his own apartment with community support in Sacramento to be near relatives.

``I have experienced life in institutions and in the community,'' said David Miller, president of Capitol People First, who has cerebral palsy and uses a wheelchair. ``Living in institutions means not having choices. This lawsuit is important because it gives people with disabilities an opportunity to be heard.''

A bill that would phase out three of the five remaining centers for the developmentally disabled and transfer more than 3,800 patients into a community-care system is pending in the Legislature.

Advocates say the average cost of $169,000 to keep a person in a developmental center each year is more than twice as much as California spends for those who are living on their own with community support.

The plaintiffs are asking the court to force the state to provide easily understandable information on community living options; a crisis service to avoid placing people in institutions; and an adequate assessment to determine how individuals' needs can be met.