HOME SWEET HOME

Welcome to our Spring Issue. For most of us, home is the place where we take refuge from the world, the space where we express ourselves, and where we decide who to invite in. Too often, people with disabilities are not included in even the most basic decisions about where and with whom they live. In this issue we look at why everyone should have a place to call home.

Opportunities for Affordable, Accessible, and Integrated Housing: Believing in the Possibilities and Creating the Opportunities

Jay Klein, Center for Housing & New Community Economics (CHANCE), Institute on Disability, University of New Hampshire

Over the last few decades there has been a concerted effort to end America’s affordable housing crisis. Thousands of new units of affordable housing have been developed for people who have low incomes; these include some units designed to be accessible. Although these endeavors should be applauded, affordable and accessible housing in itself does not address significant barriers still faced by millions of Americans.

Unfortunately, much of the new housing development in this country has excluded vast numbers of people who have disabilities. There remains an undeniable lack of integrated, affordable, accessible, and visitable housing from which people with disabilities may choose. Even when housing options are available, people are often not afforded control over, or given a voice in, the most basic decisions regarding where they live, with whom they live, and how they spend their time. Why? Despite creative names and shiny new exteriors, much of the new housing available to people with disabilities remains congregate, segregated, and service system controlled.

According to 1994-95 U.S. Census Bureau data, less than half (48%) of the estimated 53.9 million people with disabilities either own or rent their own homes. The State of States in Developmental Disabilities: 2004 Summary, reported 68.6% of adults with developmental disabilities lived in homes controlled by someone else. (Braddock, D., Hemp, R., Rizzolo, M., 2005) In comparison, virtually all adults without disabilities either own or rent their own homes.

In October of 2006 the US Secretary of Housing and Urban Development, Alphonso Jackson, in a letter to all Public Housing Agencies wrote, “The Department strongly supports expanding accessible, affordable, and integrated housing options to promote the transition of people with disabilities and seniors out institutional settings and into the community.” In order to assure people with disabilities are not further segregated from their communities, future housing development will need to be affordable, accessible, and integrated.

Why is it important for people to control their own homes, whether rented, leased, or mortgaged? From a community development perspective, as individuals with disabilities exercise choice and self-determination over decisions regarding their housing, they will engage in mutual and interdependent exchanges with other community members. Control of one’s housing allows individuals with disabilities to be contributing community members and to participate in the networks of mutual exchange that define the essence of community.

In economic terms, recent studies have demonstrated that providing personal assistance services to individuals living in their own homes costs far less than supporting individuals to live in institutional settings. The State of States in Developmental Disabilities: 2004 Summary found that the 41,214 residents in state institutions for people with developmental disabilities accounted for a total annual expenditure of $6.03 billion, an annual cost of $146,309 per person. The Study further reported that for the same time period, personal assistance services for 44,062 people living in community settings accounted for a total annual expenditure of $701,458,681 million, an annual cost of $15,920 per person. (Braddock, D., Hemp, R., Rizzolo, M., 2005)

Because the majority of people with disabilities have limited financial resources with which to own or lease their own homes, it is necessary to identify and combine complex financial mechanisms in order to bridge the gap between their income and the real cost of housing. These mechanisms typically include a combination of low interest rate financing, government or private grants, or rental or homeownership subsidies.

Slowly, but surely America is making strides to increase the number of people with disabilities who live in affordable, accessible, and integrated housing that they control. Throughout the country, there are a small but growing number of state and local efforts that draw upon a variety of federal, state, and local funding sources to increase housing opportunities for citizens with disabilities. Below are a few notable examples.

Iowa – The Housing Finance Agency uses resources from a state trust fund and local resources to provide rent subsides for over 400 Medicaid waiver receipts who are waiting for Section 8 vouchers. Trust funds also are used to develop or rehabilitate housing units that are affordable, accessible, and integrated.

New Hampshire – The Community Loan Fund, a Community Development Finance Institution, has assisted over 75 people using HUD Section 8 Vouchers and funds from the USDA Rural Housing Development, Housing Finance Authority, the Federal Home Loan Bank of Boston, the Department of Health and Human Services, Bureau of Developmental Services, New Hampshire Association of Realtors, and local banks to help people buy homes.

Mississippi – The Institute on Disability Studies receives counseling funds and Section 8 vouchers from HUD as well as funds from the USDA Rural Housing Agency, State Development Authority, and Housing Finance Agency, to assist 20-30 people per year to purchase homes.

North Carolina - The Department of Health and Human Services facilitates the use of over 900 Low Income Tax Credits designated for people who have disabilities; a state rent subsidy financed by a state trust fund; and Housing Finance Agency dollars to assist people at the SSI level of income. Tax credits, Section 8 vouchers, Medicaid Waiver funds and referrals from the local boards of cross disability agencies all help to assure that people have their own homes.

Texas – The State United Cerebral Palsy organization became a housing developer to use HUD Section 811, state tax credits, and state housing finance funds. State tax credit dollars and city housing funds are accessed to develop, rehabilitate, and provide rent subsidies for new housing units.

People with disabilities, their family members, and service providers are becoming more knowledgeable about the dynamics of developing housing and are making connections with financial institutions and housing providers. As a result, housing agencies and financial institutions are learning more about the funding mechanisms and service systems that support people with disabilities who have low incomes. These new partnerships have had and will continue to have a significant impact in changing policies to assure that people with disabilities have the opportunity to live in homes that are affordable, accessible, and integrated.

A Sense of Freedom

Barbara Howard, New Hampshire Community Loan Fund

Troy Lavigne, 33, has achieved one of his biggest dreams.

“I am now a homeowner,” said a beaming Lavigne, who recently bought a three-bedroom condominium in Dover. “I can do what I want here. I have the freedom to do things that I want to do.”

That freedom was achieved, in part, with assistance from the Home of Your Own Program (HOYO), which helps individuals with developmental disabilities like Lavigne secure permanent housing.

“HOYO allows people like Troy and their families gain long-term control and stability over their lives by achieving the American Dream of homeownership,” said Barbara Howard, Home of Your Own Specialist. HOYO is a Program at the non-profit New Hampshire Community Loan Fund.

“Troy is thrilled,” said Randy Lavigne, Troy’s father. “Every other word out of his mouth is, ‘Dad, I’m so happy.’”

Prior to buying the Dover townhouse, Lavigne rented an apartment in Portsmouth. It was expensive and, according to Lavigne, restrictive. “When you rent, you can’t do the same things you can do when you own,” he said. “You have to deal with a landlord.”

After looking at over 30 properties on the Seacoast, he hit pay dirt. “When I walked in here, I knew I really liked it,” he said. “It was like, bing, bing, bing! I could make it into a dance studio.”

Lavigne’s monthly house payment is substantially less than the $1500 he once paid in rent. He’s building equity and a sense of permanence. His father said, “I have piece of mind now that Troy bought a home.”

Outside of his part-time work as a stock associate at Marshall’s, Lavigne indulges many interests. He loves to dance and perform in musicals. He ice skates, competing in the Special Olympics. He swims. He follows the Red Sox and cooks. He loves planting flowers. And almost daily, Lavigne walks to the center of Dover with his aide, Tim Jenkins, to have a cup of coffee and exchange greetings with the Dover regulars.

“I love it here,” he said.

Since 1996, 79 individuals have bought homes through the Home of Your Own Program. To be considered for HOYO, a potential participant must be an adult with developmental disabilities, who is connected to a local Area Agency for Developmentally Disabilities in the state, and is receiving a residential budget through the Area Agency. For more information, contact Barbara Howard by email at or by phone at (603) -224-6669 or (800) 432-4110.

A Home of Her Own

Julia Freeman-Woolpert, Disabilities Rights Center

Six years ago Claire Shepardson bought a spacious home in Nashua. Her house has a back porch that looks over a winding brook and plenty of room for her sheltie Duke and a downstairs apartment for a live-in aide. The floor plan is open enough for Claire to maneuver her wheelchair with sip and puff controls, but cozy enough for friends to gather and chat in the kitchen nook. Photos of her large and close-knit family fill the mantel over her fireplace.

Claire’s comfortable and welcoming home is the realization of a long time dream. In 1978, with her family unable to care for her and no resources for in home assistance, Claire was “temporarily” placed in Greenbriar nursing home. Claire remembered, “My mother and father were devastated when I had to go to the nursing home.” In the beginning she had frequent visitors and went out often, but as the years passed Claire spent more and more time alone.

For 22 years Claire remained in Greenbriar. Even as the years turned into decades, Claire never stopped fighting to leave. “I kept saying it would be a whole lot cheaper for people to stay at home with people that could take care of them; people that loved them,” she noted. It took a hearing for Claire to be found eligible for area agency services under the ABD (acquired brain disorder) waiver program. Shortly after being placed on the area agency waiting list, Claire became a named plaintiff in Bryson v. Commissioner, better known as the ABD waitlist lawsuit. Claire credited both the lawsuit and advocacy by the Area Agency for Developmental Services of Greater Nashua with the state approving her budget for services.

With an approved budget, the next step was planning. Leslie Boggis, the area agency’s account manager, used a person-centered planning process with Claire to help her find a way out of the nursing home. They researched regulations, searched for creative options, and together dreamed about Claire’s future. “She’d get out an easel and write things down,” Claire remembered. “Leslie would ask, ‘How do you view things being a year from now? Can you see yourself in an apartment? What if money were no object?’ We started from there.” Claire knew she wanted the privacy of at least living in her own apartment, but didn’t know if she dared hoped for a house of her own.

With Leslie’s encouragement, Claire decided to look into home ownership. Leslie scouted houses and she and Claire looked at the ones that showed promise. Finding a house that was affordable, met Claire’s needs for accessibility, and had room for live-in assistance turned out to be a major challenge. Fortunately, Claire noted, “Leslie is tenacious, she does not give up. She’s somebody you want on your side.” Finally, they found a house in the right price range and, although less than ideal, Claire decided she could make it work. On the day she was to close, the area agency got a tip from the city that an accessible house was being foreclosed for back taxes. Claire and Leslie rushed over to take a look. It was perfect. Claire signed a sales agreement the next day.

It took some creative financing and piecing together several resources for Claire to be able to buy her home. With help from the Home of Your Own program, the New Hampshire Housing Finance Authority, and the Bank of New Hampshire Claire was able to make it work.

Finding staff was the next task. Fortunately, three Greenbriar staff members who had become friends with Claire decided to leave the nursing home to work for Claire. Six years later, two of these women are still with her. Claire is responsible for staff hiring and supervision and the area agency pays staff through Claire’s individual budget.

With donated furniture from friends and family and help arranging for the technology she needed to support her independence, Claire was ready. On June 15, 2001, a date she will always remember, Claire left Greenbriar and moved into her own home. Her dream finally had come true.

That November Claire hosted Thanksgiving dinner. Everyone came –her son and his family, her parents, brothers, sisters, nieces and nephews. “I always wanted to do holidays, but I always had to go to somebody else’s house,” she said. “We had a great time. There was more food than you knew what to do with.” Claire remembered this first Thanksgiving in her home as, “a celebration of everything!”

Claire loves her expanded horizons. She says feels safe living in her own home and has closer connections with her family and friends. Family members visit often and help out with household maintenance. When her son comes there is plenty of room for her granddaughter Abby to play. Claire is writing her autobiography and looking for an editor. She’s thinking about going to work. “It’s wonderful being able to have those choices,” she said.

Finally Home

Linda Bimbo, Institute on Disability

One hot August day in 2005 Cliff Marsh left the Merrimack County nursing home and moved into his own apartment in Concord. That first night Cliff didn’t even go to bed. He fell asleep in his new recliner in the living room, watching the Red Sox on TV – because he could.

A New Freedom Initiative grant funded by the federal Centers for Medicare and Medicaid Services made Cliff’s transition from the nursing home back into the community possible. The grant provided selected New Hampshire nursing home residents with the resources and supports they needed to successfully return to the community.

For Cliff the process of leaving the nursing home began when he told the Transition Coordinator from Riverbend Community Mental Health, “Yes, I want to move out!” An initial challenge for the Transition Coordinator was to identify and access the community-based services that would be able to meet Cliff’s complex medical and support needs. Cliff, who uses a wheelchair and is totally disabled, also required housing that was both accessible and affordable. It took months for the Transition Coordinator to locate a fully accessible apartment. Cliff had already been granted a Housing Choice (Section 8) Voucher and was ready to move. Unfortunately, HUD funding for Housing Choice Vouchers had been reduced and Cliff found himself on a waiting list. The apartment sat empty. Knowing that the landlord would not be able to hold the apartment open for long, Cliff requested and was given “bridge funding” through the grant that made it possible for him to move in.

Life outside the nursing home has not always been easy. Since moving, Cliff has had additional medical issues that have required finding increased supports. He also discovered that there was a trade-off to the independence of being in the community – isolation. Cliff said, “Even though I hated living in the nursing home, there was always someone around to talk to – even in the middle of the night.” Encouraged by his support team, including his case manager from Riverbend Community Mental Health, Cliff began taking part in more community activities. He now has friends who drop in and Cliff says that he is not as lonely.

In the institution, Cliff was told what to do and when to do it. Now, he said, “A lot of people come to my home and tell me what to do. I listen to them. And when they leave, I do what I want.”