Making a life in the community.
Norma cared for Ray, her retarded son, for 57 years. She always had trouble making ends meet - first as a single mother and then as a retiree from the public school system on a fixed income. She spent many sleepless nights fretting about who was going to care for Ray when she was gone. A few weeks after her 78th birthday, she felt pains in her chest and called the hospital. An ambulance carried her away, sirens wailing and lights blaring, to the complete bewilderment of Ray. She died on the way to the hospital. The county Department of Mental Retardation did not know of Ray's existence until a nurse from the hospital called for an emergency placement. Ray was sent to a nursing home, where he will stay until a more appropriate place can be found.
Ray is one of a growing number of people with a developmental disability such as mental retardation, cerebral palsy or autism, whose family can no longer provide care because of age, infirmity or death. Ray suffers from the double jeopardy of being old and mentally retarded. He and his peers have been called "the invisible population" because they live at home and quite often become known to the service system only during a crisis.
The 1990 census suggests that there are at least 210,000 adults age 55 or older with a developmental disability. With the aging of the "baby boom" generation - those born after World War II and into the mid-'60s - that number could reach nearly 400,000 by 2035 when the senior boom is expected to peak. Illinois estimated that in the next 10 years, as many as 3,000 adults with developmental disabilities now living with their aging parents may need community residential services.
States are faced with a public policy dilemma: how to organize and pay for long-term care for older people with developmental disabilities.
"People hear the word long-term care, and they think nursing homes and institutions," says Bruce Blaney, senior researcher at the Human Services Research Institute in Cambridge. "Long-term care should mean family and individual supports."
Traditionally, placement for older people with developmental disabilities has been in nursing homes or institutions. Today, spurred on by a strong advocacy movement, lawsuits and federal regulations, states have been moving people out of nursing homes and institutions and into the community. Between 1977 and 1989, the number of people with developmental disabilities in large institutions dropped 48 percent to 78,000. New Hampshire and Vermont have completely closed their state institutions, and New York has announced that by the year 2000 all of its institutions will be closed.
The Nursing Home Reform Act, part of the Omnibus Budget Reconciliation Act of 1987, directed states to move all people with a developmental disability who did not have a medical reason to be there, out of nursing homes and into the community. People who had been in the nursing home for more than 30 months had the option of staying.
The trend of emptying institutions and transferring people from nursing homes has strained state service systems.
"There are huge waiting lists for services for developmental disabilities in general. Add to that the pressure from older people being diverted from or moved out of nursing homes and the institutions, and the likelihood of quality placements is slim," says Deborah Anderson, project director for aging and developmental disabilities at the University of Minnesota.
Often the people who get shortchanged are those living at home with their families. A University of Minnesota study of all 50 states found 181,835 untilled service requests for people with developmental disabilities. The largest groups - 31 percent - were people living at home.
The demand for services is not going to go away - it is going to increase, forcing states to plan ahead. Professionals in the field have identified four areas for legislators to consider when developing public policy. These are collaboration between aging and developmental disabilities agencies, increased housing options, family support and flexible funding.
Both the aging and developmental disabilities agencies provide some services for older people with developmental disabilities. However, without cooperation between the agencies, services can be fragmented.
In New York state, strong collaboration exists. "It requires an attitude change and cross-training so both departments speak the same language," says Matthew Janicki, director of Aging and Special Populations in the New York State Office of Mental Retardation and Developmental Disabilities. His department is involved in an attempt to make senior centers, funded by the Older Americans Act and run by the aging network available to people with developmental disabilities.
New York also has developed a senior day program that is not restricted to people with developmental disabilities. An appropriation of approximately $3 million funds 60 to 70 programs around the state that serve 700 to 800 people.
Illinois is developing model programs that call for collaboration between local groups that provide services for the elderly and the developmentally disabled. The goal is more outreach and support services for aging families who care for a disabled relative. Special efforts went into finding Hispanic families who are traditionally underserved because of language barriers and a reluctance to ask for help.
There will be an increasing need for residential services. The trend is toward smaller, more individualized placements with support services provided. "Legislators should start supporting smallness," says Blaney. "Economies of scale produced large, impersonal institutions."
Some states are tailoring residential options to the special needs of older people. The most progressive programs give the person a choice. Nebraska offers people over age 55 with developmental disabilities the option of living in eight-bed congregate care homes with on-site day programs tailored to older people. Or they may opt to receive supports in the home where they have been living. Nebraska serves 850 people in two supported living programs. About 15 percent of them are over 55.
In New Hampshire's "Home of Your Own" demonstration project, 25 people with developmental disabilities will have purchased their own homes by year end. Vermont works to develop individual placements. Options include small group homes or developmental homes where the individual is placed with a family. People are sent to nursing homes only if they have a major medical problem.
"Because we're so individualized, we don't find the need to cate-gorize people by age," says Gail Falk, chief of community services for Vermont's Division of Mental Retardation.
Approximately 85 percent of people with developmental disabilities live at home with their families, although this percentage is estimated to be lower for older adults. But the stress is often enormous - with more single-parent households, more working women and an increasing number of elderly parents.
People with developmental disabilities can stay at home longer if they get a little help. "All families are asking for is respite care and transportation. Sometimes they need personal care attendants. If we could meet their minimal needs, it would help families and save money in institutionalization," says Mary Hayden, project director for the Family Services and Support Project at the University of Minnesota.
Illinois has a family support program specifically for adults. The Home-Based Support Services Program provides a flexible array of services to families at a cost of about $1,300 a month. Families can sign up for homemaker services, transportation or special therapies. New Hampshire's Family Support Law of 1989 set up a strong family support program that includes respite care. Service is provided through 12 area agencies.
FLEXIBLE FUNDING AND REIMBURSEMENT
States face the common problem of how to offer more services when budgets are strained and competition for existing funds is intense. Creative funding mechanisms exist to help stretch the public dollar.
Many states use the Medicaid Home and Community-Based Waiver, which allows Medicaid to pay for community options for people who are in an institution or at risk of going to one. New Hampshire has used Medicaid funds through its Community Care Waiver in place since 1983. During that time, the federal dollars used for people with developmental disabilities have risen from zero to $29 million while state appropriations have climbed from $17 million to $45 million.
With the help of the Medicaid waiver, New Hampshire was able to shut down its one state institution and move 750 people into the community. The Medicaid waiver was also used to fund residential community alternatives for another 600 people living with elderly parents who could no longer care for them. The cost of providing these services was about two-thirds the cost of institutional care. The result: better service and clear savings for the state and Medicaid.
Some states are investigating ways to permit the funding to follow the individual instead of the program. In Ohio, the families - not the agencies - determine where the money is spent. Once a family is declared eligible, they meet with the agencies and the agencies bid on what the client needs, whether it is transportation, home health or housing.
"If there were give and take in the system itself, providers would have an easier time addressing the issues with the available funding," says Alan Factor of the Rehabilitation, Research and Training Center on Aging with Mental Retardation at the University of Illinois at Chicago. For example, day program reimbursement is based on attendance. Each person must be present, say, six hours a day for five days a week or the provider is not reimbursed. But an older person may not have the stamina or the desire to attend daily programs. This problem can be addressed by using a variable rate structure or allowing the provider to fill one full-time slot with two part-time people.
There are other creative ways to address the problem without throwing money at it. A growing movement among advocates and providers encourages the increased use of "natural supports" in the community. This might include neighbors, friends, local merchants, and banks helping the person with a disability become a part of the community.
The Americans with Disabilities Act of 1990 will open up vast new opportunities for older people with developmental disabilities to live, play and retire in the community. As people with mental retardation become integrated into daily life, lobbying efforts will come from neighbors, shopkeepers and ministers as well as families. The advocacy movement continues to grow and will exert increasing pressure on state legislators.
Barbara Wright is a free-lance writer from Denver, Colo.
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|Title Annotation:||state governments transfer disabled citizens to community-based care|
|Date:||Mar 1, 1995|
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