The families of adults with autism in New Jersey are urging the state to take a more flexible approach to housing at a time when thousands of residents with developmental disabilities are on a waiting list for placement.
That flexibility is one of the goals of a bill (S-254) released on Monday by the Senate Health, Human Services and Senior Citizens Committee.
The legislation would require the state to explore new ways to deliver services to adults with autism and other developmental disabilities
Autism advocates say the bill is a vital step toward averting a housing crisis. There are nearly 5,000 New Jersey residents with developmental disabilities on the priority waiting list, and the state is expected to see a surge in the number of adults with autism in the coming years.
According to Leslie Long, director of adult services for the national advocacy organization Autism Speaks, “There are going to be 500,000 individuals over the next decade that become adults with autism,” Long said of a national increase.
Long continued, “You’re going to have huge number of adults who are in need of housing supports.”
But New Jersey officials have expressed concern that the bill could endanger the state’s Medicaid funding because federal regulators won’t approve the suggested housing alternatives.
Right now, autistic adults have one primary option: community-based housing in which they share a group home with residents who are intellectually disabled. But families are concerned that adults with autism receive an appropriate level of care geared to their specific needs.
The bill posits several alternatives, including three highlighted by supporters of the legislation. The first would allow a family to buy a house for an autistic adult. When the family gets to old to help care for that adult, the state would take over the house and the autistic adult would be able to continue living there.
The second approach would establish assisted-living facilities with individual apartments for autistic adults: 24/7 care would be provided by the state.
In the third approach, an adult with autism could live with a host family, not unlike a foster family.
Maria E. Fischer, whose 19-year-old daughter has autism, said parents are hesitant to help their children live on their own because they are concerned that the state won’t support this environment for their children in the future, moving them instead to a communal setting.
Fischer added that when adults with autism continue to live with their families, it “undermines the individual’s sense of independence and self esteem.”
While Fischer said families like hers could buy a home for their adult children, it is difficult to do so in the absence of an assurance from the state that it would provide services at that home when the services are needed in the future.
In Fischer’s opinion, this option could save the state money because adults like her daughter may not need to rely on state services early on since their families could support them longer.
Other autism advocates point out that the state would financially benefit from having the families donate their houses to the state, an approach that isn’t allowed under current law.
“It’s time to fix the housing crisis for persons with developmental disabilities in New Jersey,” Fischer said.
Adam Strauss-Goldfarb, a 17-year-old whose 21-year-old brother has autism, said the state lacks choices for adults who have a constant need for services outside of group housing. He said that the state should explore public-private partnerships to fund assisted-living facilities.
Another potential residential option that advocates favor is for the state to fund host homes, in which adults with autism live with families other than their own.
There is another concern the bill could address: transportation.
The question is how does the state reimburse families who bring adults with autism to the requisite facilities. New Jersey has a limited number of providers approved to transport adults with developmental disabilities, but some residents don’t live in areas served by the providers. Thus, they’re responsible for supplying transportation themselves.
Sen. Robert M. Gordon (D-Bergen and Passaic), the bill’s sponsor, said that if the state had more flexibility in how it delivers services, it would be in a better position to address the demand for residential placement and other needs.
Sen. Dawn Marie Addiego (R-Atlantic, Burlington, and Camden) noted that Gov. Chris Christie’s administration is concerned that the bill would ratify residential housing arrangement that could endanger federal funding.
An aide to Gordon said he is working with the administration officials to incorporate their concerns into the bill. Addiego voted to release the bill from committee, but said she reserved the right to vote against it when it comes to a vote in the full Senate.
Robert Titus, public policy director of the advocacy organization Autism New Jersey, said the bill would send a message to state officials.
“The bill is a statement on your part that the resources of the Division of Development Disabilities can and should be used in a way that is innovative,” Titus told committee members. “This bill doesn’t mandate a particular service but it does mandate being smart” in seeking different solutions to a difficult problem.
Long called the bill “an exciting piece of legislation” that would explore options for the hundreds of thousands of adults with autism who are in need of being placed in a home that would provide needed services.
“Residential supports in adult services could have a waiting list for years before they’re going to have any kind of public support,” Long said. “There is a huge waiting problem.”
Long also said that government officials must become more creative, since the demand for housing is far greater than the supply. Without government action, families are pushing the issue to the forefront.
In addition, Long noted that autism advocates disagree that the federal government has ruled out Medicaid funding for new housing arrangements.
The federal government has an official policy of encouraging developmentally disabled residents to be integrated into the community as much as possible rather than being institutionalized in settings devoted to a specific need. But Long said the government hasn’t put a limit on the number of adults with autism who live together.
“In this economy,” Long said, “we have to leverage whatever kind of public and private partnership we can.”
Long said the bill is helping advance public discussion of the issue and could lay the groundwork for further progress.
“This conversation could be a model for the rest of the country, because this particular dialogue needs to happen in every state,” she said.
Advocates for autism services, according to Long, differ as to whether the government should strictly define which community-based residences it will fund through Medicaid or whether it should instead emphasize the choices made by residents with autism and their families.
“This bill is actually a couple of years ahead of itself, which is nice,” Long said, adding, “This conversation needs to happen.”