How person-centered planning pays off
In 1993 when Jeff Strully took over the troubled Mission Hills, Calif. based Jay Nolan Community Services, the agency was days away from bankruptcy. Many of the 13 group homes for adults with autism and challenging behaviors were considered dangerous places to work. Annual staff turnover was 105%. It was burdened with six-figure legal fees related to workers compensation claims, and annual group home property damage costs were $160,000.
Strully brought passion and vision to the job. His goal? Close all the group homes. Everyone would have his or her own home. Everyone would work.
And so it happened, one person at a time as Strully tells it.
"We serve 100 people today who live in 98 homes-of-their-own," Strully told a recent gathering of Rhode Island service providers at a conference sponsored by the
"We believed that everyone could live in their own home and could work, so the question was: 'how do we make that happen?'"
The answer he said depended on the person.
It turned out that the people with the greatest need for support were the first to declare that they wanted something better than a group home. "This was great because if we could show that Jimmy, Sean, Melinda, Ray and several others could live in their own home successfully, then it would be easier, in theory, to relocate the Robs, or the Eileens, or the Jerrys."
He said that the successful relocation depended, in each case, on hundreds of variables that were encountered in the struggle to avoid the creation of one-person group homes. It required "real person-centered planning and discovery" along with person-centered support. "We had to really understand what person-centered support meant. Sometimes that isn't easy to discover and a reason we had to work hard on the circles of support that were developed for each person. Among other things, that meant that people with disabilities had a say in who provided support and complete control over how and when they get help.
Support staff compatibility is critical he said, so matching the right support staff to a person with a disability can take a long time. Of the 97 people who live in their own homes today, 89 require access to support 24 hours a day, seven days a week.
"We use a housemate model to provide primary support so that the person with a disability can thrive in their own home. He said that 46 percent of the housemates providing support have been living with the same person for more than eight years.
Support staff had to change their perception of what their job was. They had to be "generators of possibilities" -- to help people "grow in their journey." They could not be 'wish grantors' nor maids, butlers nor bodyguards. They had to learn to "walk with people on their journey" he said.
"Not everything is perfect. Things can fall apart. Giving power to people with disabilities isn't a joy ride. People make stupid decisions. But so does everyone else."
"We're saying that Jim or Melinda or Sonja are going to live in their own home and are going to have jobs. We're going to work on relationships. We're going to try to figure out how to support people correctly. We're going to use the 'circle' process. That means that support is more than paid staff and loving parents. Co-workers, neighbors others involved with a person with disabilities help them in their journey. And we've found that the severity of disability has nothing to do with number of people involved.
"And things go up and down, but you stick with it. It's not the model. It's the personalization piece. And during that struggle perhaps the best thing you can say is 'we're never going to let this person go.'
"Part of this work is not knowing. It's in the struggle. But that can be the fun part. In our 15 years of doing this we have yet to find anyone living in his or her own home moving back to a group home."
Providers say a group home remains a good choice for some
people
Jeff Strully and his story about the radical transformation of a
residential program were brought to Rhode Island by PAL at a time when
the state wants to reduce its reliance on group homes for people with
developmental disabilities not only because "it is the right thing
to do," but also because it can no longer bear the cost of
maintaining the 125 group home buildings it owns.
More than 1,200 people live in group homes, the primary residential service model that was adopted to facilitate the 1994 closing of Rhode Island's state run institution, Ladd Center.
New models of service and support centered around the notion of self-determination which "encourages an individualized lifelong planning approach with an emphasis on independence, self-direction, and informed choice are called for by the governor's budget in keeping with Rhode Island's Global Medicaid Waiver.
"All of us want to have a say in where, with whom, and how we live," Strully said. "Why should a person with a disability or multiple disabilities be any different?" he asked.
If a person wants to live with another person, the two should have something in common, he said. "And having the same disability is not enjoying a common interest. Some people with autism don't want to live with another person with autism," he added. "If you look at it from their perspective, that's reasonable."
Lisa Rafferty, executive director of Bridges, Inc., said that she agreed with Strully's ideas. She has been caring for people with disabilities for 30 years and has owned her own agency for more than two decades. She said Bridges serves people in group homes and those who live alone. She also knows every person who comes into the agency's care and emphasized that every case is different, and all situations must be handled on a case-by-case basis.
Mary Madden, president and CEO of the J. Arthur Trudeau Memorial Center said that although many of her clients could live alone, it is not always possible or the best situation for everyone. "I agree that people with disabilities should be heard, respected, and have a voice in the care they receive and the way they live," Madden said. "But each situation is different, and every person has specific needs that must be considered.
Strully basically agreed. He said that his residential program is not a new design for a service delivery system. "It's just another point on the continuum."
