By Susan Livio NJ Advance Media
One parent of a man with autism called it confusing and terrifying. A housing developer of community housing for people with developmental disabilities called it "a misguided social experiment."
The Christie administration's sweeping proposal to promote community living and wider access to jobs and activities for the developmentally disabled was roundly criticized at an Assembly hearing at the Statehouse Thursday. Parents, advocates speciality home builders and community agencies said they feared the Department of Human Services' blueprint to spend a large portion of its Medicaid funding could disrupt the living arrangements and daily routines of thousands of people.
Every state in the nation is required to submit a "transition plan" to the federal government by March 17 that describes how people with autism, cerebral palsy and other developmental disabilities will live, work and play without being segregated from the rest of society. Each state's Medicaid reimbursement, totaling in the hundreds of millions of dollars, is riding on its plan winning approval.
About a dozen invited guests told the Assembly Human Services Committee New Jersey's plan is too strict to be workable.
Under the proposal, the state would only pay for group homes that serve no more than four people, or six if special circumstances warranted it. It won't subsidize rents in an apartments if more than 25 percent of the tenants a have a disability. The state would not subsidize housing that is part of a campus, a farm, or a facility where vocational programs are also provided. Nor would Medicaid funds pay for recreational, vocational and job programs unless the clients are spending at least three-quarters of their day outside a facility for disabled people.
Lisa Parles said she and other parents are "angry and terrified" state officials would propose a plan that could result in removing funding from valuable programs, like the 48-unit Bancroft Lakeside development on a campus in Mullica Hill where her 24-year-old son is safe and happy. "Andrew requires intensive staffing and supervision and was not successful in a group home."
"I believe that limiting the disabled population is discriminatory," added Parles, an attorney in Springfield. "If we were to say no more than 25 percent of a community could be comprised of African Americans, women or Jews, we would all recognize that anti-discrimination laws have been violated."
If New Jersey submits the proposal to the U.S. Centers for Medicare and Medicaid Services, Tom Toronto, president of Bergen County's United Way, a prolific housing provider, said he would have to scale back projects that some municipalities have already approved. He'd be scaling back housing opportunities "at the precise time the need for people with developmental disabilities is as about acute as it can be."
"New Jersey is about to become the victim of some arcane ideology or some misguided social experiment," Toronto said. "We have seen the extraordinary difference our housing has made."
Tom Baffuto, executive director of the Arc of New Jersey, a family advocacy organization, said the federal government did not require any state to set "arbitrary" limits on the number of units, or specify how much time a person needed to be out in the community.
"The intent of the rule is be more community included, and most providers are getting folks into the community but not at the level of 75 percent. For many it would be a struggle," he said. Some people require feeding tubes and diapers, and then "dignity" issues could come into play out in public, he said. Changing up their routine could trigger behavior problems.
Setting limits on housing size and location and required community time "overreaches beyond the (federal) requirements," Baffuto said. Programs "should be based on personal needs."
Gov. Chis Christie has made reducing the state's reliance on large institutions a priority as a matter of human rights. Last year, he closed two developmental centers and transferred about 700 residents, although many went to the remaining five centers. His administration has also moved ahead on Return Home New Jersey, a plan to return more than 500 disabled people from out-of-state facilities - some over the objections of their families and Democratic lawmakers, including Huttle.
"If the state's plan is the most restrictive in the nation, I would like to find out why," Huttle said.
Huttle invited Human Services Commissioner Jennifer Velez to the hearing but she declined. Velez's spokeswoman declined to address specific criticisms raised during the hearing.
"As required by the Centers for Medicare and Medicaid Services, DHS has issued this draft plan for the purpose of soliciting public input, which is vital to the process of developing a workable strategy that is compliant with the federal rules," Velez' spokeswoman Pam Ronan wrote in an email. "All input will be reviewed and considered for inclusion in the final submission of our state plan."
The department is hosting a public hearing on the plan Thursday from 10 a.m. to noon at the Department of Children and Families Training Facility, 30 Van Dyke Avenue, New Brunswick. The state is also accepting written comments on the plan until Feb. 26, addressed to Home and Community Based Service Rules, c/o Lowell Arye, Deputy Commissioner, N.J. Department of Human Services, P.O. Box 700, Trenton, N.J. 08625-0700.