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By Daniel Mont
Special to The Washington Post
Tuesday, October 8, 2002; Page HE01

Back in 1996, Pat Carver of Falls Church was not her brother's keeper -- not yet.

Jimmy, her older brother who has autism, was living in an institution she abhorred, but she thought there wasn't much she could do about it. Her ailing father -- Jimmy's guardian -- refused to discuss Jimmy's situation and wouldn't move him, even though the institution was being sued for abuse against several residents. But beginning to sink under the weight of Alzheimer's, her father left a letter from a Virginia official in plain view. The letter stated that a signature by a responsible family member would authorize the state to move Jimmy to a different home.

Carver didn't hesitate. She signed her name and rescued her brother.

The transfer from parent to sibling of the caretaker's role for a person with serious mental disorders or developmental illness is not always so dramatic. But the experience is often complicated, emotionally trying and, thanks to several factors, increasingly common.

Part of the reason is demographic: The aging of the baby boom has brought unprecedented numbers of those with mental disorders into middle age. In addition, improved medical technologies are extending the lives of some people with disabilities so dramatically that many now outlive their parents -- something that would have been unlikely a generation ago. For example, in 1968, only a small number of those with Down syndrome made it past their first birthday; by 1997, according to the Centers for Disease Control and Prevention, the median age of death had become 49, thanks to improved ability to treat the congenital heart defects and respiratory infections that often accompany the condition.

At the same time, social policies and tightened state funds have discouraged institutionalization of all but the most disabled patients and promoted living and working in the community for those with developmental disabilities, as well as mental illness. "This increase in community-based care has required families to be more present as a support. Professionals come and go, but the family is always there," says Ellen Lukens, an associate professor of social work at Columbia University.

Some five million people have assumed or expect to assume responsibility for a dependent brother or sister, according to Don Meyer, director of the Sibling Support Project of The Arc of the United States -- a leading advocacy organization for people with mental disabilities. But the number, derived from government statistics on adults with mental illness, can't be verified because no agency tracks this population. A 1996 study by Marty Krauss, a professor of disability studies at Brandeis University, found that about 60 percent of siblings of people with mental retardation and 30 percent of siblings of the mentally ill expect to be their brother's or sister's caretaker. Approximately one-fifth of these siblings expect to care for their brothers and sisters in their own homes rather than just monitor or supervise the services they receive elsewhere.

The logistical, financial and emotional dimensions of a transfer of responsibility can be intense. "[That] people with disabilities are living longer and are no longer in institutions . . . are good things," says Alan Wooten, director of mental retardation services for the Fairfax/Falls Church Community Services Board, "but when an aging caretaker dies, it's left up to the remaining family to navigate the system."

But even before they can tackle such challenges, many siblings prepared to become caretakers have to surmount a more immediate obstacle: winning the consent of elderly parents.

Clash of Wills

 

Why might a parent be unwilling to even discuss transfer of responsibility to an adult child?

"Parents sometimes shield their adult children without a disability from a lot of the intensive caregiving that goes on in that family. They do this with the best of intentions, but then siblings find a huge weight of responsibility thrust upon them. They are clueless about what the plan was," says Jeannie Cummins, director of advocacy and programs at The Arc of Northern Virginia.

Other times, parents don't want to cede control to a child who disagrees with them on which support services are appropriate. "Congregate facilities for living and working" -- such as large-scale group homes and sheltered workplaces -- "are offensive to me," says Mark Russell, executive director of The Arc of Northern Virginia. "But [this kind of segregated environment] was manna from heaven in the 1970s. Our parents worked hard for them and needed them. They still love them."

Sometimes, too, parents don't want to admit they've become dependent on either the companionship or physical help that a child, even a mentally disabled one, can provide. "Sometimes," says Cummins, "parents don't want them to leave because they depend on them for some of the legwork around the house. Siblings get frustrated because in their minds the parents are overprotective. The siblings see opportunities [for their brothers and sisters to gain more independence] that parents can't or don't want to see."

A North Dakota woman, referred to The Washington Post by the Sibling Support Project, says she has gingerly approached her mother for years about planning for the future of her mentally retarded brother. Her mother refused, she says, treating any suggestion about his care as criticism. But since the older woman suffered a heart attack last year, she has begun to relent. Still, she is obstinate in her shunning of social services as a care solution. Her daughter, who asked that her name be withheld, understands why.

"[My brother] is not only mentally retarded, but also deaf. When he was in kindergarten, there was a teacher who tried to teach him to read lips," she says. "When he wouldn't look at her face, she hit him. [My brother] would have fits when he boarded the school bus. He was terrified of going to school. My mother said, 'That's enough!' and kept him home. My mother has never trusted the schools or any other social programs since."

"Now he just sits around the house and eats," she says. "He weighs over 350 pounds." Her mother, who is barely 5 feet tall, takes care of all his needs. "She cares for him in ways that, frankly, I never could."

The complexity of sibling relationships in general -- and these sibling relationships, in particular -- says Meyer, can compound the guilt and resentment that can accompany intergenerational transfers of responsibility. He describes many brothers' and sisters' attitudes toward their dependent siblings as "intense ambivalence," often still bearing traces of anger at the additional demands their siblings placed on their parents when they were growing up.

This ambivalence can be heightened for siblings of those with late-onset mental illnesses like schizophrenia who often don't have a whole lifetime to grow into a supportive role. "Later diagnosis makes a huge impact," says Xavier Amador, national director of research and practice at the National Alliance for the Mentally Ill, "because it can lead to unrealistic expectations. Separating the illness from the person is far more difficult than with mental retardation."

That problem, at least, is one the North Dakota woman doesn't face.

She has suggested to her mom that they ask social services for assistance with in-home care. But her mother says she doesn't want strangers snooping in her home or telling her she has not done right by her son. She is not swayed by her daughter's reassurances that services for people like her brother are different now than they were 40 years ago.

The daughter is frustrated. "My mother is hanging on by sheer will," she says. "She has a pacemaker. What if she has a heart attack when she is alone with [my brother]? He can't call for help. How long will it be until someone finds her? I tell my mother, let us plan for [him]. When you die, I want to be able to grieve for you. I don't want to be caught up in a social service emergency, resenting you."

Limited State Help

 

The availability of services for people with disabling mental and developmental disorders varies by state. But, in all three local jurisdictions, budget limitations have put the squeeze on services at just the wrong time for siblings reaching middle age. "The aging of baby boomers and their caregivers is starting to put much more of a demand on state and local services," says Martha Adams, director of Virginia's Office of Mental Retardation.

State funds can be matched by federal funds if the disabled person qualifies for Medicaid -- the primary source of funding. Eligibility is determined separately by each state, but is based on the income and assets of the recipient.

Medicaid payments in such cases go toward residential services, day support, in-home services, supported employment, pre-vocational services, home modification, assistive technologies and skilled nursing.

But when a state exhausts its annual funds, the federal match is no longer available, and applicants must wait for help with housing and other services. In Virginia, the waiting list is 1,800 names long, according to Adams; sibling advocates say it can take years to be served. In the District, the waiting list holds 68 names, according to Deborah Daniels, of the Mental Retardation and Developmental Disabilities Administration.

For the moment, Maryland is better off. There, a 1997 waiting list initiative allotted $118 million over five years to expand residential services -- both housing and in-home assistance -- to those with mental disabilities. The funding increase provided service to more than 9,000 people -- nearly all those who applied for help during that time. Funding runs out in July 2003 and some advocates worry that, with no extension, the waiting list will begin growing again.

When there is a waiting list, preference for residential services generally goes to applicants with older and presumably needier caretakers -- usually parents. Sibling advocates bristle at the impact of this policy. "The potential burden goes to siblings," says Russell, "because of the inadequacy of how the state is regarding its own responsibility."

In Virginia, Adams acknowledges the problem. "There aren't enough funds to serve everyone on the waiting list," she admits. When demand exceeds funding available, she says, "the family" -- often siblings -- "must provide."

Not all the costs of assuming responsibility for a sibling, though, are financial, as Felix Gyi, 46, of Bethesda, found out.

Gyi's experience wasn't as dramatic as Carver's or the North Dakota woman's, but being responsible for his sister, Diane, 36, who has Down syndrome, is still intense. "Diane is another child for me," he says. "It's a very emotional thing to provide for the long haul. Of course I will do it. I love Diane, and she is very much part of our family."

Growing up, Gyi always knew that he would be his sister's caretaker, but the responsibility came sooner than he thought. His mother was diagnosed with breast cancer in 1986 when he was in graduate school in Pittsburgh. They had extended discussions about Diane's needs and Gyi's responsibilities, and because of the acuity of his mother's condition, they were able to move Diane up on the waiting list for residential services. Gyi returned to the Washington area upon completing grad school so that Diane could remain in the house where they grew up.

Today, four years after their mother's death, Diane receives structured support for independent living through Jubilee, a community residential service provider funded in Maryland primarily through Medicaid. But the transfer of responsibility exacted a high price in family relations: the estrangement of a third sibling, a brother. Gyi suggests the outcome was "maybe a function of [the brother's] not being able to cope with a family member who is that dependent."

Acceptance

 

Not everyone wants his or her dependent sibling living away from the family. Julie Calhoun, 35, fully intends for her brother Jared, 21, to stay with her in her Alexandria home. Jared, who is profoundly mentally retarded, also has autism and slight cerebral palsy and requires a feeding tube in his stomach. Calhoun looks after both him and their father, who is recovering from a heart attack, fighting prostate cancer and awaiting a hip replacement.

"I can't leave Jared with anybody," Calhoun says. "He has so many needs you can't just drop him off." Besides, she adds, being autistic Jared has a good deal more trouble integrating new people into his life. When asked what will happen when she is no longer around, she says she is in denial. She'll deal with that later.

But don't speak to her about her "burden." Like many who have assumed responsibility for a disabled sibling, she doesn't feel the term is appropriate. "When my mom was dying, she asked me what I was going to do with Jared. Was I going to give him up? She told me I didn't have to deal with this. But I don't feel this is a burden," says Calhoun.

Perhaps it takes someone who is in that position to fully understand the sentiment. Someone, for example, like Gyi. He puts it simply: "My sister enriches my life."

Daniel Mont is a Washington area freelance writer specializing in disability issues and the author of "A Different Kind of Boy: A Father's Memoir About Raising a Gifted Child with Autism."