A common problem for developmentally disabled individuals whose living arrangements are often imposed on them, are feelings of loneliness and of not having control over their lives.
An innovative program in New Hampshire indicates that a more consumer-directed approach not only improves quality of life, but also saves costs.
Under a project funded by a grant from the Robert Wood Johnson Foundation (RWJF), developmentally disabled individuals in New Hampshire, with help from their families and friends, are allowed to make their own decisions about their living arrangements and to take control of their lives. A predetermined budget, set somewhere between 75-90% of previous costs, has been used to pay for services. About 45 individuals have participated in the program in the Keene area since 1993. Preliminary data indicates the savings are about 12%.
Pilots in other states
The results, so far, have prompted RWJF to offer $5 million in additional grant money to other states that want to try similar projects, and 38 states have responded with applications.
"The major purpose is not just to control dollars but to get (persons with disabilities) connected to their communities," says Thomas Nerney, project co-director of the national office of the RWJF program called "Self-Determination for Persons with Developmental Disabilities." Grants are scheduled to be awarded to about 13 or 14 state programs by Feb. 1.
Some examples of how clients have been impacted in the New Hampshire program:
• A middle-aged man who had been unemployed and lived in a group home now lives in a home of his own choosing, with roommates he met through involvement with a local theater group. He has a job, has improved quality of life, and the cost to Medicaid and the state is $39,000 per year compared with previous costs of $65,000, a 40% decrease..
• A young man who was severely injured in a car accident and who spent years in an out-of-state rehabilitation facility, now is living near his family. He lives alone in his own home, although he needs 24-hour-support. His parents supervise the staff needed to assist him.
• A woman in her 40s had previously rented a home and lived with a roommate. Now she lives with her twin sister who is not disabled. Her close relationship with her sister has helped her get off a lot of medications and to be less harmful to herself. She does not talk now, but is showing signs of making progress in that area.
Chloe Learey, project coordinator for the self-determination program for Monadnock Developmental Services, Inc., says helping the developmentally disabled develop close relationships with their families and with others is an important goal of the program and one that pays dividends in mental and physical well-being. Monadnock Developmental Services, Inc. is one of 12 area agencies that the state contracts with to serve the developmentally disabled population.
Case managers help individuals and their families manage funds and build living arrangements around both paid support and informal support by family and friends. The front-end planning can be labor-intensive, as each case — and each budget — is unique. Mr. Nerney says that he hears comments from the field that this is "hardest work we’ve ever done, but it’s also the most worthwhile."
As individuals are assimilated into the community and find jobs, their social networks widen, in turn lessening the need for paid support in the future, some believe.
Setting budgets
"One thing we’ve learned is that people will always spend 100% of the money available, no matter what it is," Mr. Nerney says. One goal for the future is to refine budget-setting. Mr. Nerney admits that determining the budget, based on discussions with the individuals and their families, currently is a rather "arbitrary" process. To help individuals who exceed their budgets, as well as to bring people into the system who are currently on waiting lists, it is also critical to develop a risk pool and reserve funds, he says.
Ms. Learey says Monadnock Developmental Services is still experimenting with different approaches, but currently finds that it’s best to find out what people need first and then to attach numbers to those needs. People’s needs vary so much that 75-90% of costs may too much for some, yet too little for others.
The New Hampshire Division of Mental Health and Developmental Services has received a $750,000 grant from RWJ in December to bring the Keene program into the rest of the state. Doug Watson, statewide coordinator for this three-year grant, says in the next three years about nine of the 12 area agencies will get money to experiment with a self-determination program of their own. He estimates that there will be 400 individuals in these programs by the end of three years.
The New Hampshire’s waiver program was flexible enough to accommodate the self-determination program, but the challenge for many states, Mr. Nerney says, is implementing such a program within their existing structures. Ms. Learey notes that it’s challenging to help clients pay for what they need without actually directly giving them money.
A longitudinal study of participants in the New Hampshire program shows marked improvement in quality of life. The study asked participants how much freedom of choice they had over 29 different decision areas, such as where to live, how to spend money, how to use leisure time, when to go to bed, and what to eat. Fourteen areas showed significant increase, results which James Conroy of the Center for Outcome Analysis, the private consulting firm in Ardmore, PA that conducted the study, calls "stunning."
A finding that surprised Mr. Conroy was a decrease in problem behavior. When restrictions are removed, some problem behaviors may disappear, he notes.
Mr. Nerney estimates that the developmentally disabled account for only 1% of the Medicaid population eligible for long-term care services, but consume 10% of the resources for long-term care.
—Jana Sansbury
Contact Mr. Nerney at 603-862-4808 or Ms. Learey at 603-352-1304.
Self-determination program for developmentally disabled
in New Hampshire serves as a national model
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