Following Christie Vetoes, Families of Intellectually Disabled Fearful of Future

Andrew Kitchenman | August 12, 2014 | Health Care
Governor’s actions could pave way for forced group-home placements for people currently in out-of-state facilities and developmental centers

Maureen Clark (left) and Maura Clark
Gov. Chris Christie’s conditional vetoes of measures that would have limited the state’s ability to move people with intellectual disabilities into group homes has left some families fearful about what will happen next.

The vetoes apply to two separate bills: S-2158/A-3418, which would have placed a moratorium on residents at out-of-state facilities being transferred back to New Jersey, and S-2249/A-3475, which would have required that residents of developmental centers slated for closures remain within 30 miles of those facilities.

Return Home New Jersey, a state program started in 2009, aims to bring back to the state the nearly 700 residents who were living in out-of-state facilities, where they were placed because there were no appropriate residences for them in New Jersey at the time.

At the same time, the state is closing two developmental centers, which are large public residential facilities for people with intellectual disabilities.

In both cases, the residents would be transferred to group homes operated by private organizations, which are typically single-family houses in which two to four people live.

State officials have said that these facilities have improved over the years and that a 1999 Supreme Court decision, Olmstead v. L.C., requires the state to emphasize community placements.

Some of the state’s largest disability-rights organizations have supported the state plans, arguing that it will lead to federal funding benefiting a larger number of people .

However, supporters of each bill argued that the state has been moving too quickly to transfer people who have lived in their current facilities for extended periods – in some cases for nearly their entire lives – and who have grown to depend on the staffs and services at those places.

They have cited the deaths of two people who moved from developmental centers to community placements as an example of what might happen to others forced to relocate. State officials, while they have haven’t discussed details of the cases, have said they weren’t related to the transfers.

Bill supporters also argue that a Supreme Court decision intended to prevent states from forcing residents to live in certain facilities is being used to overrule the preferences of residents and families.

If the Legislature accepts the conditions that Christie attached to the vetoes, there would no longer be a moratorium on the bill pertaining to out-of-state returns and would instead establish a process that could lead to families being required to pay all or part of a residents’ expenses if they remain outside New Jersey.

Meanwhile, the bill applying to developmental center residents would go into effect, and transfers would no longer be limited to within 30 miles of the center that is closing.

Sparta resident Maureen Clark hoped that Christie would sign the bill that included the moratorium on transfers from outside the state, since that would have allowed her daughter Maura to remain at Woods, a facility in Langhorne, PA, where she has lived for 35 of the 47 years of her life.

“We don’t know what to do anymore,” said Clark, adding that she was “appalled” by the veto.

Maura has cerebral palsy, which has led to repeated seizures and left her unable to talk, walk or stand without being supported. Maureen Clark noted that no legislator voted against the bill in either house.

“She needs to be where she…she gets wonderful care there,” said Clark, who is 71. She and her 84-year-old husband Arthur have met with several group-home operators in New Jersey, but she said none of them would be able to provide appropriate care for Maura. Clark is concerned that eventually a provider will insist that they are capable of meeting Maura’s needs, then show they aren’t up to the task.

Maureen Clark said that she and her husband committed themselves 35 years ago to regularly make the 85-mile trip from their Sparta home to visit Maura. They are retired and would be unable to pick up the cost of Maura’s care. Arthur had a stroke two years ago.

“Woods was able to provide the education and therapy that she needed,” Clark said, adding: “The state put her there.”

She added that Maura struggles with change.

“If they uproot her at this point, they’re going to terrify her,” she said. “I could just see her closing her mouth and not letting anyone give her her seizure meds.”

Clark also said that a point frequently raised by supporters of group homes – that they bring people closer to their families – brings her no solace, because Maura wouldn’t have access to the same range of services and medical specialists that she has at Woods.

She expressed hope that the Legislature will overturn Christie’s veto — but that hasn’t happened in the more than five and a half years that he’s been governor.

At a legislative hearing on the bills, Deputy Commissioner of Human Services Dawn Apgar said both the lack of federal matching funds and the inability to adequately monitor out-of-state placements were factors in the decision to bring disabled residents back to New Jersey.

She noted that the state settled a lawsuit with the nonprofit advocacy organization Disability Rights New Jersey that requires the state to increase group-home placements, and that the state spends an average of $115,000 per year for each of the 464 people currently living in 13 other states.

Apgar also noted that the state has already returned 146 residents since 2009, often taking years to ensure that each person would have a safe and appropriate placement with one of 280 group-home providers.

She said families who want to keep residents in out-of-state facilities could pay for it themselves or establish residency in the other state.