Suit says state has disabled boxed in

LITTLE ROCK — Hundreds of developmentally disabled people are illegally segregated from the rest of society in large state institutions, in part because Arkansas doesn’t offer adequate alternatives for them to live in the community, a lawsuit filed by the U.S. Department of Justice on Thursday says.

The lawsuit also alleges that Arkansas officials have put little effort into figuring how the state’s developmental-disability services system should work.

As a result, the Justice Department says, some disabled people who want to live at home or in smaller group facilities that will allow them access to people who aren’t disabled may have to wait a decade for state assistance.

“The state gives individuals with developmental disabilities the draconian choice of receiving services in segregated institutions or receiving no services at all,” the lawsuit reads.

This “systematic” failure is a violation of the 1990 Americans with Disabilities Act, Assistant Attorney General Thomas E. Perez said in a released statement and in the lawsuit.

The implications of the lawsuit are unclear, but other states that faced similar court action, such as Georgia, are now in court approved settlements that require extensive training, monitoring and changes.

Georgia also has spent $70 million improving its system for the developmentally disabled, yet federal authorities still want to shut down its large institutions, said Tom Wilson, a spokesman for the Georgia Department of Behavioral Health and Developmental Disabilities.

“While we would like to move in a direction of serving more people in community settings, we felt that was a rash and precipitous way to go about an effective transition of your system,” he said, adding that his state is now trying to renegotiate its settlement agreement.

Julie Munsell, a spokesman for the Arkansas Department of Human Services, says Arkansas is prepared to fight the Justice Department in court to keep its state-run human development centers open.

“We will defend the right of our families to choose where they will have their loved ones served,” Munsell said after reading the lawsuit Thursday.

“We will defend the conscientious choice we’ve made to have that full spectrum of services for Arkansans with disabilities.”

The agency, which is responsible for the human development centers, is doing the best job it can of providing families all options, she said.

Over the past decade, Arkansas’ governors and Legislature have agreed to put millions of dollars into community-based programs so that people can get therapy, medical care, in-home assistance and other services even if they don’t live in large facilities.

State officials agree that the Americans with Disability Act is “the law of the land,” Munsell said, but they disagree with the federal government’s assertion that Arkansas isn’t complying with that law.

At the heart of the issue, Munsell and others have said,is a philosophical difference between what state and federal officials think about institutions.

The Justice Department, Munsell said, seems opposed to institutions altogether, while the state recognizes that they are the best options for some families.

But Dana McClain, a senior attorney with the Little Rock-based advocacy group Disability Rights Center, said it’s about more than that.

“It’s sad because Arkansas should be doing what’s right instead of having a federal judge tell them to do it,” said McClain, who has a 16-year old daughter with Down’s syndrome.

The real issue, McClain said, is that the state seems unwilling to recognize that people with developmental disabilities can live safe, productive lives outside of institutions.

“The U.S. Supreme Court said they have the right to be in the most integrated setting,” she said. “So to say somehow Arkansas is going to be different than the other 49 states and we’re going to treat individuals with developmental disabilities as less than they are treated in other states is a disservice to the community and those families.

“What I hope we see is that Arkansas moves into the 21st century and becomes much more knowledgeable about what this population can do.”

McClain points to her daughter, Dylan, who lives at home and goes to public school.

“My daughter would qualify to live in an HDC. Dylan is your typical 16-year-old. She reads, she writes, she works on the computer, she texts her friends on the cell phone,” McClain said. “She does those things because that is the community in which she lives.”

The Justice Department’s lawsuit contends that the 1,100 or so residents living in human development centers and their families aren’t fully informed about the lives those residents could have outside of the center.

Among the allegations in the lawsuit are that the state:

Does not consider placing people in a community setting unless families “ proactively” request a more integrated setting.

Fails to adequately educate families about their options, the result being that most families don’t request a community placement.

Does not adequately assess whether human development center residents could be served in a less restrictive setting.

Fails to educate human development center employees on how to make assessments, on what services are available or on the possible benefits to residents.

Fails to provide the treatment to support a resident’s eventual discharge from the institutional setting.

Fails to provide adequate discharge plans for the “ few”residents who are deemed eligible for release.

Munsell rebuts many of the allegations, pointing out that the state meets annually with families to explain the options and that it spends millions of dollars to provide choices.

She pointed to the $359 million in the state’s budget for fiscal 2008 for community-based services compared with the $101 million for the human development centers. More recent figures weren’t immediately available.

The community-based dollars include $164 million toward the Medicaid “waiver” financial assistance program, which helps families cover costs if they don’t want their loved ones to live in institutional settings.

“We’ve worked very hard to leverage all the dollars invested into this system,” Munsell said, adding that the state has a waiting list of people who want to move into human development centers.

She could not provide the number of people waiting.

The Justice Department said in its lawsuit that the waiting list for the waiver program has 1,400 people on it.

At the rate that they are accepted, the Justice Department said, it could be 10 years before people get the financial assistance.

People living in human development centers who want to move out go to the top of the list for waiver funds, and McClain said it’s sad that families might have to move their relatives into a facility just to get help quickly.

The lawsuit also says the state is “actively expanding its institutions, at the cost of developing community alternatives.”

Munsell said she’s unsure what the Justice Department is referring to. The state is rehabilitating some of the older facilities with federal stimulus money.

What is a developmental disability?

A developmental disability is a lifelong impairment caused by mental or physical defect, according to the Developmental Disabilities Association.

Down’s syndrome, cerebral palsy and autism are among the most common examples of developmental disabilities.

Such conditions can limit people’s ability to care for themselves or learn as well as their mobility and financial self-sufficiency.