Would State’s New Rules for Developmentally Disabled Do More Harm Than Good?

Andrew Kitchenman | February 17, 2015 | Health Care
Plan would encourage more integrated housing, require more activities outside in community -- but advocates for disabled call rules impractical, too costly

Assemblywoman Valerie Vainieri Huttle (D-Bergen)
Two key provisions of a state plan to better integrate people with intellectual or developmental disabilities into their communities are meeting fierce resistance from those who provide housing and other services to those disabled, who argue that they won’t fit patients’ needs and will be too costly.

The state wrote the draft plan in response to new federal Medicaid regulations for home and community-based services for people with such disabilities.

Opponents are focused on provisions requiring programs that operate during the daytime to hold 75 percent of their activities outside of their facility and steering state funding for new housing toward developments where no more than 25 percent of the residents have disabilities.

The first rule seeks to make sure is that intellectually or developmentally disabled people are doing activities of their choice — in the community — that reflect their individual interests and goals, according to the draft plan.

“The facility should serve as a hub and central meeting location, while the majority of programming is offered out in the community in activities such as volunteering, pre-vocational training, recreation, etc.,” according to the plan.

The state has been pushing to move many disabled people from large facilities to home- and community-based living, citing a U.S. Supreme Court case that requires that residents with disabilities live in what is described as the least restrictive, appropriate setting.

These efforts by the state have included closure of state developmental centers and the “Return Home New Jersey” program, which requires intellectually and developmentally disabled residents – some of whom have lived in facilities outside of New Jersey for most of their lives — to return to the state.

The state has largely been supported by some of the larger advocacy and provider organizations serving people with disabilities. They say the disabled will benefit from being in community group homes and other in-state facilities, which can be less expensive than developmental centers and out-of-state facilities.

But those two, specific parts of the plan have drawn opposition from the same groups.

They say the requirement that 75 percent of daytime activities take place away from the main facility is unrealistic and ineffective. And they contend that steering housing funds to developments with the 25 percent limit on disabled residents would make it impossible to build residential facilities just for the disabled.

Thomas Baffuto, executive director of the Arc of New Jersey, said that the state proposal exceeds federal requirements. His organization advocates for and provides services to people with developmental disabilities.

The day programs frequently operate in facilities other than the smaller group homes where many people with developmental disabilities now live. While such facilities do offer community activities to those who are interested in and able to participate – such as trips to shopping malls, bowling, and part-time jobs and volunteer work – some disabled people are better served by activities based in the central facility, Baffuto said.

“What we don’t want is just artificially going out to meet a requirement and not have a meaningful, full program for an individual,” said Baffuto, who later said that upsetting the daily routines of some disabled people “would have a dramatic impact on some folks’ health and safety.”

Baffuto noted that the federal Centers for Medicare and Medicaid Services, which required states to write the plans, didn’t set numerical goals like the 75 percent mandate. He added that his organization has reviewed roughly 20 other states’ plans, and none of them specified amounts of time that must be spent away from daytime facilities.

William Testa, executive director of the Arc of Morris County, said the day programs should be able to focus on meeting their clients’ individual needs.

“Are we going to have a feeding tube administered in the food court at the Rockaway Townsquare Mall every Tuesday and Thursday to meet a state mandate?” Testa asked. “I mean, it’s completely illogical to proceed in this direction.”

Opponents of the provisions also pointed out that the federal government is giving states four years to implement their plans, but the New Jersey Department of Human Services plan would require complying with many of the provisions by the end of 2016.

This timeframe drew criticism from Assemblywoman Valerie Vainieri Huttle (D-Bergen), chairwoman of the Assembly Human Services Committee, which recently convened a hearing to discuss the issue.

“The state likes to rush plans without a plan in place” to implement them, Huttle complained.

The housing requirement is meant to increase housing options for intellectually and developmentally disabled people, since the bulk of current state funding for such housing is going to projects where all residents are disabled.

But Thomas M. Toronto, president of Bergen County’s United Way, said this provision would effectively shut down a series of developments his organization is planning across northern New Jersey. They would be based on the concept of Airmount Woods in Ramsey, which exclusively serves people with autism.

While the state supports small group homes with no more than six residents, in which residents get intensive support and attention, state officials are looking to have better-integrated options for those who would don’t need that a high level of care.

But Toronto said this “defies logic,” since many residents and their families would prefer to live in developments built for people with the same condition, such as autism.

“This is rather chilling to me,” Toronto said of the proposed change in state funding. He also questioned whether developments that charge market rates would be able to successfully integrate up to 25 percent of residents with developmental disabilities.

Lisa Parles wondered what the funding shift would mean for facilities like the Bancroft Lakeside Campus in Mullica Hill, which serves her 24-year-old son, who has autism.

“We are literally terrified that there’s not going to be places to keep our children safe,” said Parles, who said that her son had a negative experience in a small group home but also has behavioral issues that would make it difficult for him to integrate into an apartment building where residents with disabilities were a minority.

The state will hold a public session on the plan Thursday from 10 a.m. to noon at the Department of Children and Families Training Facility, 30 Van Dyke Ave., New Brunswick. The federal deadline for the state to submit its plan is March 17.