One Family, Lots of Wheechairs

Over the years, state and federal taxpayers bought dozens of wheelchairs for a family that has lived in a rambling ranch-style house with a swimming pool near this lush Silicon Valley enclave.

But the family is not exactly on easy street. Few others will be hit harder if Medi-Cal follows through on the governor’s budget proposal to stop providing chairs for adult beneficiaries who are not institutionalized.

“I don’t know how they could contemplate doing that,” said Jim Forderer, a former teacher who, along with his wife, Marian Aiken, has adopted 27 disabled boys over the last few decades and provided a home to several more.

Now about a dozen are adults whose wheelchair needs are covered at least in part by California’s health program for the poor.

One is Ben, a 23-year-old high school graduate whose cerebral palsy leaves him unable to speak or control his arms, let alone walk. When asked why he wants to get a new power wheelchair to replace his battered manual one, he labors for several minutes over his answer.

A small camera on a computer screen mounted in front of his face records the movement of a tiny metallic sticker on his forehead. With halting shifts of his head, he selects letters, one by one. Words slowly materialize on the screen, then he stops and throws his head back with a gleeful smile.

“It would make me independent,” he had written, “and I would not be stuck in the house.”

State Department of Health Services officials said they were reluctant to propose cutting wheelchairs to help eliminate the state budget shortfall. But Stan Rosenstein, who presides over Medi-Cal as a deputy director, said the items are the most expensive piece of medical equipment that Medi-Cal buys.

“We have a large budget gap to [close], and to get there you have to cut where the money is,” he said.

Even though they are of critical importance to the people who need them, wheelchairs are also vulnerable to cuts because they are an optional benefit under federal Medicaid requirements. As long as states have money to pay for chairs, Washington shares the cost. An estimated 5,700 beneficiaries would be affected if the governor’s cuts went through.

The Forderer-Aiken house hums with several boys in wheelchairs, one playing a skateboard video game, others talking and teasing, motoring up and down carpeted ramps.

Ben is the only one not moving. And, if the Medi-Cal cuts go through, he may not be eligible for an electric chair like the ones his younger brothers have.

Kyle, 13, who has no muscles in his trunk or limbs, uses a high-tech chin-operated chair that cost more than $20,000.

Victor, 16, who has cerebral palsy and came from a Russian orphanage, can push a walker for short distances, but he takes his $8,500 power chair to visit neighbors, go to church or even use public transportation.

The threatened cuts are a special concern to Victor, because he recognizes that his need for a chair will be greater in adulthood.

“As you get older, you can’t rely on your parents to transport you,” he said. “To keep up with my friends, I have to use a chair.”

The parents strain to put into words why they adopted so many children who require special care.

Forderer says they simply saw a need and filled it. Aiken says the children just kept coming into their lives.

As a onetime social worker, Forderer saw enough of institutions to conclude that disabled people would be better off in the community. He began adopting disabled children. And so did Aiken, who is deaf.

After they married in 1985, they bought a home with help from Forderer’s parents but had to enlarge it.

At one time, 15 boys lived in the house. There were so many wheelchairs that they accidentally gouged holes in the walls and bumped the family dogs.

“It is painful when those chairs go over your toes,” said Aiken, a former teacher who issues orders one moment and hugs the boys the next. “The chairs can weigh 250 to 300 pounds” when occupied.

Forderer and Aiken recently separated. She lives with Ben and eight other sons in the family home. He lives nearby with six sons, including four adult wheelchair users. Two others are living in group homes, and several are attending college or otherwise living independently. Five have died.

To Forderer, Medi-Cal’s budget-cutting plans seems “penny-wise and pound-foolish,” because it costs less to provide wheelchairs than to pay to house his sons and other disabled people in institutions.

“Lots of them are quadriplegics who need to keep changing positions to prevent sores” and orthopedic problems that result in much more costly hospitalization and treatment, he said.

Forderer is a pioneer of sorts and an advocate. Along with Pegi Young, Neil Young’s wife, and a speech expert, he started the Bridge School in Hillsborough in 1986 for children with verbal impairments and physical disabilities. He remains on the board.

A onetime horse trainer, Forderer also launched a 4-H Club horseback riding program for disabled youngsters.

And in 1991, he joined protesters who successfully opposed Medi-Cal’s plan to trim what the program would pay for wheelchairs.

Many of the children, Forderer said, live on Supplemental Security Income payments of roughly $650 to $750 a month, and Medi-Cal or California Children’s Services covers their health benefits, including the wheelchairs.

Caring for the boys is a full-time job, said Forderer, who receives $10.50 an hour from the government and help from an attendant.

“I enjoy it, but it is hard work,” he said. “I am 60 now ... and still lifting 27-year-olds out of their chairs. I got six [sons] off to school today.”