Activists and Parents Decry Funding Level for Disabled : Money for Jay Nolan Center Sought With Bingo, Lawsuits

On most Friday nights, Connie Lapin can be found working at a bingo hall in Hollywood.

Lapin hates those Fridays. She hates seeing the elderly and poor lose their money on the games. And she hates it when people yell at her for calling out bingo numbers that they don’t like.

She keeps returning, though, because of her autistic son. The teen-ager lives at the Jay Nolan Center, a cluster of nine group homes in the San Fernando and Santa Clarita valleys that specialize in caring for autistic adults with severe behavioral problems.

Operating on Annual Deficit

Each year, the nationally renowned nonprofit center faces a debt that soars above $300,000. It has to be paid somehow.

So Lapin, her husband, Harvey, a Northridge dentist, and other parents spend a lot of time each year raising money through bingo games, fashion shows, luncheons, an annual auction and other events.

“I feel like a beggar,” Connie Lapin lamented. “I’m always hitting up someone for something. People see me coming, and they run. It’s a terrible strain on friendships.”

Financial Woes Attributed to State

The parents and the center’s executive director, Tom Thompson, blame the center’s financial problems on the state’s Department of Developmental Services, which is responsible for the welfare of approximately 75,000 developmentally disabled Californians. For several years, the department has not given the center enough money to survive, they contend.

It is a complaint echoed across the state by those who care for the developmentally disabled.

Fed up, Jay Nolan’s board of directors last spring decided to take their case to a judge. The center’s lawsuit, filed in Los Angeles Superior Court, alleges that the department has been violating state law by not paying adequate rates.

Others have followed Jay Nolan’s lead. Two similar lawsuits have been filed. Jay Nolan instigated one of the other suits by urging the state and local chapters of the National Society for Autistic Children and other financially troubled facilities in the state to sue. The first hearing for all three suits will be held in October.

The suits are thought to be the first ever to challenge the state’s rate-setting policy.

This year, Thompson and the parents have become some of the department’s leading critics. They have also joined with others in lobbying vigorously for passage of a bill by Assemblyman Gerald N. Felando (R-San Pedro) that would increase the rates paid to charities and others who operate homes for the developmentally disabled.

“Our feeling is that we are supplementing the state’s responsibility,” said Thompson. “We can’t take it anymore.”

Thompson said the center’s financial problems are similar to those in other facilities that care for some of the state’s most severely disabled individuals.

Each month, the state gives Jay Nolan $2,671 to provide for the care of each of its 46 residents. But at year’s end, a $6,000 shortfall has built up for each resident, Thompson said.

Fund raising does not erase the entire debt. Last spring, the charity had to obtain a $175,000 line of credit from a local bank. The center used a big chunk of it--$100,000--to repay another bank loan that had come due.

“The danger is you keep going into debt, and you keep going into debt . . . and you’re in real trouble,” Thompson said.

The department agrees that community-based facilities for the developmentally disabled are getting shortchanged. The department calculates that a facility’s costs typically exceed the state’s payments by 14%.

Revised Rate Schedule Tested

Department officials, however, say that a new rate schedule should ease the financial woes of Jay Nolan and the other providers. The department is anxious to implement an experiment, which is now being conducted in three parts of the state. In the new structure, providers’ costs are more accurately pinpointed and reimbursed accordingly, the department said.

Meanwhile, department officials say they are sympathetic to the plight of agencies like Jay Nolan. But Harold Pitchford, chief of the department’s section dealing with community living arrangements, noted that Jay Nolan already receives more money for its program than most state agencies.

“My impression is we’ve done everything we can for them,” said Pitchford, who called Jay Nolan’s a “superior program.”

Jay Nolan’s need for more state funds has been documented by the North Los Angeles County Regional Center, says James Shorter, the regional center’s executive director. The regional center, one of 21 in the state, is a nonprofit state-funded agency that finds homes and educational programs for the disabled on behalf of the Department of Developmental Services.

Why are costs so high to care for emotionally troubled autistic adults?

A visit to the yellow stucco house in Newhall where Shawn, the Lapins’ 18-year-old son, lives, provides an indication.

Shawn is a handsome teen-ager, the sort girls might eye slyly on the beach. But Shawn has trouble doing things that would be second nature to a preschooler. His vocabulary is very limited, and he cannot string words into sentences.

One of Shawn’s many problems is an inability to handle changes. One time his parents visited him on a day when they were not expected. When they left, Shawn pulled out his toenails.

Shawn and his five house mates, who are prone to tantrums, will just as readily take out their frustrations on their home. Given a chance, they are fully capable of wrecking it.

Evidence of Violent Behavior

Signs of their attempts abound. A sliding glass door was replaced with boards when the residents repeatedly used it for target practice. One teen-ager considered his bedroom walls a punching bag. The teen-ager, who is the size of a football player, has also broken several beds.

Other casualties include a donated pinball machine--the victim of karate chopping--and a Ping-Pong table.

Not all the costs are in maintenance. It takes a lot of staff to handle people like Shawn. Eight full-time staff members work with the six residents in a 24-hour period.

Controlling the residents’ aggressions is a priority. And progress is made.

Shawn, for instance, is no longer breaking light bulbs, which was one of his favorite pastimes. The staff finally persuaded him to label the light bulbs instead.

Shawn also stopped trying to run away after the staff placed an old stop sign in the yard. Shawn was eventually taught to obey the sign. Now when he makes a break for freedom, he stops when he sees the sign.