NJ disabled man begins walk to Washington to support closing of institutions so people with disabilities can live in community

From The Times of Trenton, N.J.:

TRENTON, N.J. - A disabled Hamilton man walked straight into a controversy Monday when he embarked on a trek to the White House to support the closure of New Jersey developmental centers in favor of community placements for residents there.

Under a pair of identical bills being considered by New Jersey's Legislature, five of the state's seven developmental centers would close over the next five years, and most residents would move into group homes. By redistributing funds, the bills would aim to house more people and avoid institutionalization.

And while some families of center residents are against the change, 24-year-old Wayne Baker (pictured) says he's all for it.

Before he left the Statehouse to embark on the walk he will turn into a documentary film, Baker, who has cerebral palsy, said the idea that people with developmental disabilities need to be institutionalized is a dated perception.

"Today, we have options, and it should be about giving the consumer the choice of where they want to be," the online college student, liquor store employee and filmmaker said. "I'm a disabled person and I live in the community, and look at all the things that I've done."

While Baker says he's "probably one of the highest-functioning disabled people that exists within our society today," he relates to the plight of those in developmental centers because, "regardless of how severely handicapped you are," he said, "you're still considered, according to the system, developmentally disabled."

But some family members of people in developmental centers say the move toward community placements will harm New Jersey's most "fragile and innocent" citizens.

Some people with physical disabilities are cared for at the centers.

However, most center residents are "profoundly and severely retarded" adults with no other options, many of whom are nonverbal and need their loved ones to speak for them, said Cindy Bartman, state leader of national Voice of the Retarded and president of an association for families and friends of residents at Hunterdon Developmental Center.

For some residents, leaving the facilities they know as their homes would be disturbing, said Bartman, whose brother has lived at Hunterdon since 1969.

In addition, she said, by leaving centers, residents would lose important therapeutic services that help them function at their highest capacity, and the convenience of having doctors, recreational facilities and even Special Olympics training on site.

Hamilton resident Donald Brutzman, whose son has been at New Lisbon Developmental Center for 22 years, added that the change would be hard on parents, many of whom are older and have moved to be close to their children.

It's a complaint Bartman has heard before.

"There was a survey recently undertaken by advocates for New Jersey developmental centers which questioned the families of the residents (there), and 96 percent of respondents opted for placement in the developmental centers versus community placement," she said.

The debate will be played out in public tomorrow when invited speakers weigh in on the issues during a meeting, hosted by the Senate and Assembly human services committees, in Committee Room 4 at the Statehouse Annex in Trenton.

About 2,800 disabled adults live in developmental centers in Green Brook, New Lisbon, Vineland, Woodbridge, Clinton, Totowa and Woodbine, according to a state Web site.

There are about 7,800 people on a waiting list to get into the facilities, the bills state.

There are no plans now to close the centers, except for the west campus of the Vineland facility in about a year, because it's inconveniently located, said Pam Ronan, a spokesman for the state's Division of Developmental Disabilities, part of the Department of Human Services.

And while officials at the DDD have not taken a position on whether the remaining developmental centers should be closed, they support the idea that disabled adults should live in the least restrictive environments they are capable of handling, and that the state should help put them in the settings they prefer, Ronan said.

Introduced in January by primary sponsors Assemblyman Louis Greenwald, D-Voorhees, and Sen. Joseph Vitale, D-Woodbridge, the bills state that the switch to community-based care would allow New Jersey to serve more people -- particularly those on the waiting list, living with their families, recommended for community placement, or transitioning out of school.

The bills call for an 80 percent reduction in the population of the centers and a moratorium on further placements there.

The state would retain a single developmental center in North Jersey and one in South Jersey.

To sketch out the details of the shift, including the reduction and transition of center staff, New Jersey would establish a Community Services Planning Council, and a steering committee to oversee the changes.

Funding to support community placements would come from money appropriated for improvements to developmental centers; reduced overtime and operating costs; proceeds from the sale of the centers; federal funds; and, through 2013, unspent dollars from the DDD's annual budget.

It's a plan that appeals to the New Jersey Association of Community Providers, a Ewing organization Baker has worked closely with since he decided to weigh in on the issue a couple of years ago.

On its Web site, NJACP claims that the DDD spends a third of its $1.3 billion budget to support only 8 percent of the people it serves -- and that more than 80 percent of those in the developmental centers don't need to be there.

The state is spending $259,150 a year, on average, for every person who lives in one of the centers, the NJACP argues -- although Ronan said the amount ranges from $139,000 to $230,000.

It's generally about 25 percent cheaper for a disabled adult to live in a community setting than in a developmental center, she said.

"Across the nation, for three decades, states have closed 140 institutions and restructured their services to support people living with developmental disabilities in the community," NJACP's Web site states. "We look to New Jersey to follow suit."

But according to Bartman, NJACP is supporting the bill because it will make money if the centers close and more people move into community care.

"They'd be contracted by New Jersey to offer services," she said.

Meanwhile, Bartman said, New Jersey communities would be hurting as center staff members lost their jobs.

But Baker said preserving the 8,000 jobs at the centers is no reason to keep people institutionalized.

"We can't continue to enslave people against their will in the name of these jobs," he said.

Over the past couple of years, Baker, a Nottingham High School graduate, has been compiling a video library of interviews with people who have left developmental centers and are happy about the change.

Recently, he interviewed two best friends who'd spent decades in the centers before moving out to live together in the community.

"They have a back yard, their own TV and they get Wawa hazelnut coffee, which they love to do," Baker said.

"It's typical activities like that that we're taking from them (by keeping them in centers)."

As he continues his walk toward Washington, D.C., Baker said he'll interview people on both sides of the community-placement issue.

He'll treat the 180-mile walk as what he calls a Search-U-Mentary, or search for knowledge, he says, posting videos of his experiences on his Web site, catatonicfilm.com.

"The walk's purpose is to present a new perspective on what developmentally disabled is, to fight the stigma placed on disabled people, (the idea that) they cannot possibly live in the community," Baker said.

"Everyone will get to see what a developmentally disabled person can do."

Yesterday, around 7 p.m. Baker and his film crew were making their way down Route 70 in Cherry Hill.