At 34, after a degenerative nerve disorder left her unable to live on her own, Michelle Schladenhauffen entered a brain-injury rehabilitation center in Kennebunk, Maine. It was supposed to be for a couple of months, while the staff evaluated her and found an assisted-living placement. Instead, she remained there for more than a year. Eventually, she was transferred to a nursing home in Hampton, N.H., where most of the residents were decades older than she. What was supposed to be another temporary stay turned into months, then years.
“I was young and vivacious and wanting to experience life, and I was around a lot of death,” she recalled recently. “I didn’t really have room to grow. I felt like it was jail.”
Schladenhauffen isn’t alone in her experience. People in nursing facilities who would prefer to live in a community often struggle to find the support they need to make the transition to home-based care. But that’s starting to change: UNH’s Center on Aging and Community Living (CACL) is at the forefront of a statewide effort to enable residents such as Schladenhauffen to live and age where they wish. Under contract with the Bureau of Elderly and Adult Services, CACL manages the N.H. Community Passport program, which has grown significantly since its inception in 2007. So far the program has helped some 200 New Hampshire residents move from an institutional setting to their (or a relative’s) house, to a rented apartment, or to a small-group home.
“We’re not trying to close nursing homes or say nursing homes are bad,” says CACL Co-Director Susan Fox. “We’re saying people should have a choice, and people who want to stay at home should have options to receive services at home.”
That goal is especially relevant at a time when American society is aging. In New Hampshire, the number of people 65 and older is expected to double by 2032, according to a 2012 report from UNH’s Carsey Institute. The New Hampshire Center for Public Policy Studies predicts that, by 2030, nearly one-third of the state’s population will be over 65.
But the Passport program isn’t just for the elderly; it’s open to all New Hampshire residents who have spent at least three months in an institutional setting, receive Medicaid, and qualify either for a Medicaid waiver program allowing them to receive services at home or for specific state-financed mental-health services.
After learning of NH Community Passport from an attorney at the Disability Rights Center in Concord, Schladenhauffen received a referral from the Passport program to work with Patty Cotton of UNH’s Institute on Disability, which runs CACL in partnership with the New Hampshire Institute for Health Policy and Practice. “She promised me she wasn’t going to give up on me until I got back into the community,” Schladenhauffen said. Cotton helped Schladenhauffen think about where she wanted to live and what she hoped to do with her future – and then develop plans to meet her goals. Schladenhauffen also became a strong self-advocate who reached out to agencies and lawmakers. “I was very motivated and driven to get out of the nursing home,” she said. “That’s not where I pictured my life.”
Yet sometimes it was difficult to remain hopeful. At 30, Schladenhauffen had been diagnosed with Charcot-Marie-Tooth disease, a hereditary disorder that damages the nerves of the arms and legs, leading to muscle weakness and loss of sensation. By her mid thirties, she had to use a wheelchair and needed assistance with daily tasks. From her shared room at the nursing home, she conducted a years-long search for a viable living arrangement, frequently encountering obstacles and rejection. Then she got a call from Betty’s Dream, an independent-living facility in Portsmouth where she’d been on the waitlist. The property manager said the words she’d been waiting to hear: “You can move in.”
Schladenhauffen’s story is typical in that she experienced the most common barrier to leaving a facility – lack of accessible and affordable housing, says NH Community Passport Director Margaret Almeida. The Passport program provides access to a specialist who helps participants find a place to live in the community. In some cases, it also assists them in getting medical equipment, modifying their homes to make them safer, and training caregivers.
The Passport program is part of a national effort to address biases toward institutionalization embedded in state laws, budgets and Medicaid plans. In 1999, the U.S. Supreme Court ruled that two Georgia women had been discriminated against when the state kept them in a psychiatric hospital rather than letting them receive services in their community. In response, Congress passed Money Follows the Person in 2005 to enable states to serve more people at home. The Affordable Care Act of 2010 allocated additional funding for Money Follows the Person and extended it through 2016.
Under the program, the federal government pays for 75 percent of participants’ expenses in the first year of their transition back into the community. (The state covers 25 percent). That’s larger than the usual federal Medicaid share, which in New Hampshire is 50 percent. The state uses the money it would normally contribute toward Medicaid costs to enhance existing home- and community-based services.
With a budget of more than $3 million for the 2014 fiscal year, the Passport program is set to help more people than ever before – a boon for both taxpayers and the well being of New Hampshire residents, Almeida says. “It’s often less expensive to serve people in the community than in institutions. Plus, a lot of times people report better quality of life if they’re not living in an institution when they don’t want to.”
That’s true for Schladenhauffen. Now 41, she’s been living in her apartment at Betty’s Dream for the past year and a half. Her days include cookouts with friends and visits from family. She’s taking a watercolor class and enjoys outings to downtown Portsmouth. She adopted a cat, Jasper Rea, from the Society for the Prevention of Cruelty to Animals.
Though she’s looking for steady part-time employment (before her condition worsened she worked as an after-school counselor at a YMCA), she also wants to be a voice for people with chronic conditions who wish to live independently. She participated in the NH Leadership Series, run by the UNH Institute on Disability, which trains families and adults with disabilities to advocate for themselves and others. In addition, she serves on the advisory committee for NH Community Passport.
“In the nursing home, I remember thinking, ‘what did I do to deserve this’?” she says. “Here I can say, ‘I deserve this, every last bit of it, and there are going to be more and more exciting things on the horizon’.”
Written by Sonia Scherr ’13MFA