Parents Say County Disability Unit Is Collapsing : Health care: Patients who are supposed to be the beneficiaries of the system bear the brunt of problems from underfunding and neglect, relatives say.

Edward and Louise Deeb shuttled their developmentally disabled adult son in and out of more than a dozen residential care facilities before they found what they believed to be an acceptable home.

The 91-bed Casa Grande, they say, was everything the other places had not been: clean, well run, with a caring staff.

Their son, Joseph, 48, has lived in the facility happily for 15 years and has come to call Casa Grande home, the Deebs say. So they were shocked when they learned abruptly last month that state regulators had accused the facility of violating health and safety codes.

State Department of Health Services inspectors cited Casa Grande for non-life-threatening conditions that included lax record-keeping and failing to provide required daytime activities for patients.

“If there were problems at the facility, why did they let them go on so long without saying anything before?” Edward Deeb asked.

State regulators revoked the facility’s Medi-Cal certification and have threatened to cut off funding if improvements are not made, which might mean transferring Joseph to another facility, possibly outside the county.

“It’s home to (Joseph), and we would hate like hell to see it go,” Deeb said.

For the Deebs and other parents and relatives of developmentally disabled patients, what happened at Casa Grande is representative of a system they believe is in disarray--with the brunt of the problems borne by patients who are supposed to be the beneficiaries of services.

They complain that services for developmentally disabled patients are underfunded and that the community and its needs receive little attention from politicians or the public.

“Unless someone has had a loved one that they have to care for like this, they can’t know what we go through,” said Barnie Brady, who is guardian for his 52-year-old sister, Maureen, also a resident of Casa Grande.

A group of parents are holding a rally today in front of the regional Developmental Disabilities Center in Orange to call attention to a system they say is collapsing.

“We need to raise the public’s awareness about the problems this community faces and offer support for people with developmental disabilities,” said Francine Isom, president of Tustin-based Parents and Advocates for the Developmentally Disabled.

Isom and other critics say state regulators and the regional centers that contract with the state to provide services for disabled patients have not worked closely enough to solve problems before they become serious.

The 21 regional centers statewide provide diagnosis, evaluation, education, program planning, advocacy and referrals for 104,000 developmentally disabled patients. The local center serves about 7,000 county residents with mental retardation, cerebral palsy, autism, epilepsy and other disabilities.

State officials concede that cutbacks have hampered their ability to provide services for people with developmental disabilities.

Funding for community service programs was reduced by more than $31 million this year for a total budget of $648 million, said Randy Ferguson, assistant deputy director of community services for the agency in Orange.

The regional centers are required by law to operate within their reduced budgets but must also provide all eligible patients with services.

Officials also argue that the developmental disability community as a whole is plagued by complex regulations and overlapping agencies, low pay and high turnover, making it difficult to keep trained people on staff.

“I have no doubt that in some cases we might do things a lot better,” Ferguson said, “but I think generally there is a great deal of effort to work as cooperatively as possible.”

But many critics accuse both state and local officials of being more interested in protecting the status quo than disabled patients. The parents are particularly critical of the center in Orange, which they accuse of failing to monitor conditions adequately at county board-and-care homes and other facilities.

“The entire regional center system is collapsing,” Isom said, “but we have a double dose of it here in Orange County because the center in the last five years has devoted its time and energy to politics and lobbying, rather than client services.”

The result has been a series of what she called unnecessary closures, including two large board-and-care homes--Jackson Place in Santa Ana and the Pearlmarck Annex in Anaheim--that caused the sudden displacement of 130 residents in July; many of them were wheeled out of the facilities in a chaotic state.

A subsequent investigation by the Department of Developmental Services of the handling of the Jackson Place closing cited the regional center for coming across as aloof and insensitive and for being unresponsive and uncommunicative.

The report also found that the center had failed to notice any problems just one month before Jackson Place was closed.

Isom and parents of Casa Grande residents contend that if there were deficiencies at that facility, the regional center should have been working with administrators to ensure that they were solved before the certification inspection.

Regional center officials have defended their actions in both the Jackson Place closing and the Casa Grande decertification. They argue that the responsibility for complying with state regulations ultimately rests with facility administrators.

“In terms of Casa Grande, everyone has been working together to make every effort to keep it open,” said Dwight Tate, associate director of the regional center. “We think we have carried out our very limited mandate.”