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As Parents Age or Die, More People Are
Assuming Care of Disabled Siblings
by Daniel Mont
, The Washington Post,
October 7, 2002
Original URL:
http://www.washingtonpost.com/wp-dyn/articles/A56664-2002Oct7.html
For more articles on disabilities and special ed visit
www.bridges4kids.org.
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."
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