Those with disabilities: Where should they live?

A civil rights battle has been simmering not far below the surface of local and national discussions on how and where people with intellectual and developmental disabilities – people with Down syndrome or autism, for example – might live and work in the future.

One key part of the debate centers on whether government funds should be spent on congregate housing arrangements – group homes, villages, neighborhoods, where people with such disabilities are the primary residents.

Some see that as a sequestered environment, exactly the kind of thing the nation is trying to leave behind as it promotes community-based life for all. Others see such options as a welcome, sustainable alternative for those who may need support but still want a place of their own.

The debate emerged here Friday during a daylong conference organized by the Homes For Life Foundation, which has donated 27 homes to Delaware residents with such disabilities. The conference was meant to showcase innovative housing ideas taking root around the nation – such as The Arc Village in Jacksonville, Florida, where ground will be broken next week on an $18.6 million, 97-unit community of affordable duplexes and triplexes to be rented by those with intellectual and developmental disabilities.

But an undercurrent of discussion focused on whether the U.S. Centers of Medicare and Medicaid Services would approve funds for home- and community-based services to support such a project.

The centers earlier this year released new rules on the kinds of settings it will support with federal funds, steering everything toward independence, choice, and community integration. Anything that looks or functions like an institution will have to prove it's no such thing to be eligible for future home- and community-based funding.

The new rules reflect the mandates of the Americans with Disabilities Act (1990) and the subsequent 1999 U.S. Supreme Court ruling known as Olmstead, which said people with disabilities have the right to live in the least-restrictive environment appropriate for them.

The Arc Village in Jacksonville probably will face extra scrutiny from federal officials, all agreed. It will proceed even if Medicaid funds are not granted, said Jim Whitaker, its director. The project was sewn together with support from Florida lawmakers, tax credits, grants, community partners, and private donations.

He finds it ironic, though, that government officials are promoting self-determination on one hand and narrowing the choices available on the other.

"What business do I have telling a family or a self-advocate what they should want?" asked Whitaker.

The Jacksonville project looked almost too good to be true to some in the audience Friday, acres of land for outdoor activities, a village of duplexes and triplexes, all with big porches, a community center with dining facilities, game rooms, a jacuzzi, and a movie theater, and a network of walking paths that connect homes and neighbors.

Why would the government not support such an option?

"I want my daughter to be in the community, but I want her to be safe," said Pat Kelly, whose daughter, Laura, has Down syndrome and works in Gov. Jack Markell's office. "She needs her own place, but she needs to be safe."

But to Daniese McMullin-Powell, a longtime disability rights activist who has handcuffed herself to the White House fence to make her case against life in institutions, the day's discussions made her feel like she had been to a "segregationist meeting."

McMullin-Powell uses a power chair because of post-polio syndrome. She has children and grandchildren with a variety of disabilities – including autism and Down syndrome, she said.

She wants all of them to have access to full lives in their communities. But she does not want government money used to support segregated communities for people with disabilities. That money should go to those who can live in ordinary community settings and want to do so.

"This would suck up every drop of Medicaid money there is," she said. "If they want to choose congregate living, then let CMS use only nursing home money. Don't suck it all up because you want to live in summer camp forever."

Delaware has not submitted its transition plan for complying with the new Centers of Medicare and Medicaid Services rules yet. The plan is due by March 2015. Jane Gallivan, director of the Division of Developmental Disabilities Services, said she is waiting for further guidance from the centers before releasing a draft of the state plan. She will seek public comment on the draft starting in January, according to Jill Fredel, spokeswoman for the state Department of Health and Social Services.

Dr. Lanny Edelsohn, a neurologist whose wife, Micki, founded Homes For Life, believes their son, Robert, and others with intellectual disabilities should have the right to live together if they wish to do so. Why should that segment of society be forced not to live in the settings of their choice?

"People aren't things that can be put in nice boxes," said Desiree Kameka of the Madison House Autism Foundation, which supports a wide variety of housing options.

Affordable housing for those with these disabilities is a crisis situation nationwide, Kameka said, with 853,000 people living with caregivers over the age of 60.

In Delaware, she said, 2,900 people with intellectual and developmental disabilities live with a caregiver over the age of 60.

Affordable housing vouchers are too few to meet the demand, she said.

Multifamily communities and communities designed to support those with disabilities could address many needs, Kameka said – including the loneliness many in this population experience.

In one promotional video, a young woman with Down syndrome said, "I want to not just be independent, but be independent with others."

Kameka said a Texas rancher developed such a community, "Down Home Ranch," on his land, offering many with disabilities opportunities to work with animals and horticulture.

"We have a human and civil right to make choices about where to live," she said.

McMullin-Powell agrees, but said Friday's audience was all "white, rich people" who had other options than to rely on Medicaid supports. She said people sometimes use safety concerns "as a barrier to integration" and instead of locking people into gated communities, they should make sure communities are safe for everyone.

But the federal funding is a critical piece for many families, especially those whose loved ones need constant care.

"We're very concerned that funding remains," said Joy D'Avanzo of Pike Creek, whose 22-year-old son has severe autism and lives at home. "It is hard to find help and turnover is high. And when I pass on, will my kid be thrown into foster care until a room opens up? I can't even die in peace."

U.S. Rep. John C. Carney said it was important to address the problems that arose in institutions, "but sometimes the pendulum swings too far."

The federal government is not good at flexibility, he said.

"We're moving in the right direction," he said. "We've made a lot of progress and the people in this room are a big reason for that. Delaware has always had a very forward-thinking perspective on it, but it's hard because of the need for flexibility. If anybody can do that, it's Delaware."

Esme Grant of the National Association of Councils on Developmental Disabilities, said the new rule is not meant to create fear for anyone, but to ensure that government funds are used appropriately.

"The rule is not shutting programs down," she said. "This is a transition plan – this is what home- and community-based services will look like."

Laurie Nicoli, an attorney and parent of a child with an intellectual disability, said families shouldn't have to defend their choices.

"You have to prove to the government that your choice is appropriate?" she said. "I have a real problem with that. I see government money as our money. And I don't see the legal basis for it."

Kameka said families and individuals don't believe their voices have been heard on this.

"They feel their choices for the future will be put in jeopardy at a time when there are so few options. Why create more barriers at the state level or disallow certain settings based on a bias?"

Micki Edelsohn, founder of Homes For Life, said she will meet with the like-minded Families Speaking Up group to determine if there is interest in developing a planned community here.

Connie Thomas of Newark, whose 23-year-old son has severe autism, said options are needed for those who cannot live independently, too. She cares for her son at home now, but what happens later?

"He needs constant care," she said. "I'm looking at the future. Where is he going to go when we're gone? And who will be taking care of him?"

Contact Beth Miller at (302) 324-2784 or bmiller@delawareonline.com. Follow on Twitter @BMiller57 or on Facebook.