People with disabilities in NJ wait years for homes

From The Star-Ledger in NJ Nov. 30:

Although she knew the letter from the state was coming, Elaine Buchsbaum was not prepared for how devastating it would be.

Seven years ago, she and her husband put their son Matt's name on the community housing waiting list for people with developmental disabilities.

Earlier this month, the unwelcome news came in the mail from the state Division of Developmental Disabilities. Matt Buchsbaum is number 1,126 on a list of 4,601 people who need a home.

When the Buchsbaums last asked the state for their son's placement number it was 1,327. And that was two years ago.

"For me, it's overwhelming. I don't see where this is going," Buchsbaum said. "The answer can't be there is no service at all."

Buchsbaum, 62, said she sees no progress in the state's attempt to integrate disabled people into the community, especially if you take into account those who have moved off the list because they either left the state or died.

The division said it sent the placement letters this month to keep families more informed in response to complaints the process was bureaucratic and impersonal.

Division spokeswoman Pam Ronan said notifying families about their loved ones' place in line for government-subsidized housing will now be "an annual event."

What the state won't be able to tell families, however, is how long they will have to wait for a home because funding levels change from year to year.

For Stephen Somich, any wait is too long.

The 26-year-old man with Down syndrome has a job, a girlfriend, and a strong will to take the next step. He would like to leave his family home in Whippany and live in his own apartment, just like his younger brother did after graduating from college.

But the Division of Developmental Disabilities made it clear just how far from ready the state is to help him. He is No. 4,552, according to his father, Steve Somich.

Seeing his son's number forced the elder Somich to consider the cold reality of state economics. Without a steady infusion of government funding to jump-start a nearly dormant placement effort, Stephen Somich might be waiting for his independence until his parents, both age 55, are too old or sick to look after him.

"I realized, given where they are with placing people, my son would never get a placement unless something happened to me and my wife," Somich said flatly.

"Emergency" placements, such as when a parent gets sick or dies, drive the movement of nearly 300 people a year. Often they end up in one of the state's seven "developmental centers." For many, this is not the inclusive environment and independent life they had longed for.

Non-emergency placements, made with dedicated state funds, have dwindled since 2002. Last year, the state dedicated $2.8 million, enough to move about 28 people from the list.

The notification letters have been motivating families to redouble their lobbying efforts in Trenton for more funding. The Somich family, father and son, became citizen lobbyists this year, making appearances at legislative hearings to urge lawmakers to find money in the state budget to dedicate to community housing.

My son "saw the letter on the table and read it and said, 'What does this mean?' I said it means we have to do more lobbying. He said, 'Okay,'" Somich said. "He knows nearly all his friends are living at home, too."

This year, the budget contains $12.5 million, a more promising number, to assist people on the waiting list, Ronan said.

But before the housing waiting list is addressed, assistant commissioner Ken Ritchey of the Division of Developmental Disabilities set aside $1 million to assign roughly 200 disabled people to day programs, which are in short supply.

"Ken Ritchey didn't want anybody sitting home with nothing to do," Ronan said.

That leaves $11.5 million to put together housing plans for roughly 100 people, she said. Meanwhile, families further down the list are encouraged to call their case managers at the division to talk about programs like respite and physical therapy that might be available while they wait, Ronan said.

"Maybe we can provide some support right away," she said.

Dinah Fox of Randolph said she hopes the letter does more than get parents talking to the state. They need to talk to each other to devise their own plans because the budget outlook next year is grim.

Her daughter, Robyn, is ranked 3,692 after waiting three years on the priority list, she said. "This is abysmal and unacceptable," she said.

Fox and her friend, Nancy Delaney, have already pitched an idea to Gov. Jon Corzine that would unite parents in common geographic areas to pool their state funds to purchase and set up homes for their disabled loved ones. They would then arrange for a flow of existing state and federal entitlements to help pay the ongoing operating costs.

But so far, the idea has not gained traction. Fox is also devising a plan to try to get the town of Randolph to build low-income housing for disabled adults like her daughter.

Fox said it was the right thing to do for state Human Services officials to send the letters.

"I hope they did it for motivation ... to get parents riled up," she said. "I think their (Human Services officials') hands are tied."