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Taking
The Next Step
By Melissa Healy,
Los
Angeles Times
May 5, 2003
Loving
Ties
On her 40th birthday last June, Martha Billington
moved out of the tidy shingled house that she grew up in Melrose, Mass. As
friends and family helped load her belongings onto a rented truck, Martha
climbed into the cab and beeped the horn in happy celebration.
Martha Billington, born with Down syndrome in 1962, was leaving the nest.
A year later, with Martha living in a group home, working a full-time job
and happy in her new life, her 80-year-old mother, Norma, is preparing to
sell the family home. After raising three boys and Martha — "my
joyous little girl," with the round face and shy smile — "the
time is right," she says, to make her own move to a smaller place.
Her work is done.
In numbers and ways never seen before, stories like the Billingtons' are
playing themselves out in communities across the nation. A generation of
parents who have cared for their developmentally disabled children at home
now face their own old age and the prospect that their children — grown
now, but still needing constant care and support — will outlive them.
Many have never asked for help from the government, but need it now, when
the system built to help this special population is already creaking under
the strain.
What is new is not only the size of this aging population of caregivers;
it is that their children are outliving them at all — a testament to
improved health care and lengthening life spans among the 4.3 million
Americans with mental retardation.
By the best estimates, there are about 673,000 individuals with
developmental disabilities nationwide — in California, roughly 69,000
— who are cared for at home by a family member over age 60. Many remain
unknown to state and county offices responsible for their support because
these parents, until their health begins to fail, are quietly doing the
job themselves. And their numbers are expected to accelerate greatly in
the coming years as a generation of aging baby boomers, who lobbied for
and won extensive government services for their disabled children in the
1970s, will start turning to the states in droves for help.
"We're just beginning to see the magnitude of the problem," says
David Braddock, a University of Colorado psychiatry professor who tracks
the population of developmentally disabled Americans. The system of group
homes and residential supports that states have built to assist adults
with mental retardation will have to double in size in the next two to
three decades if it is to keep up with the demand, Braddock says. And
under current federal and state law, states must keep up with demand or
face lawsuits.
For parents like Norma Billington, who defied her doctor's advice and
cared for her daughter at home for four decades, Martha's transfer from
home care to a state-owned, county-run group house marks a poignant moment
of closure. "I think I've done everything I can to have Martha
prepared for life without me," Norma reflected recently. "She's
experienced death and knows what it's about. Maybe it'll be a little
harder on her than the average person, but she'll be all right."
But for many other parents with developmentally disabled sons or
daughters, the recognition that a change must be made in the caregiving
arrangement brings fear and uncertainty. Across the country, the numbers
of state-owned group houses like Martha's lag far behind the numbers of
people with disabilities who want them.
So many aging caregivers of now-grown children with mental retardation
have nowhere to turn. Siblings frequently step in, but far-flung families
and a patchwork of differing state programs often make the transfer to a
sibling's household a painful adjustment for the family member with mental
retardation.
Many aging caregivers face a wrenching dilemma: whether to continue living
independently with the help of their developmentally disabled adult child,
or to provide for the future by transitioning the child to state care.
For decades, says Brandeis University professor Marty Krauss, these
parents "felt they were the final protectors of their child's quality
of life; that no one would protect their child the way they would, and
they would accept nothing less." But often as these lifelong
caregivers grow old, adds Krauss, "it's a very reciprocal
relationship."
Starting in 1988, Krauss and Marsha Seltzer of the University of Wisconsin
tracked 471 families in Massachusetts and Wisconsin in which parents
nearing or in their 60s continued to care at home for a developmentally
disabled child. Over the course of a decade, they found that the family
member with mental retardation acquired more new skills and made a
smoother transition when aging parents were active in their child's
transition to care outside their home.
Krauss and Seltzer also found that for all the hardships that came with an
unexpected lifetime of caregiving, the parents they studied were as happy,
healthy and socially connected as others their age. However, recent
studies that have focused on Latino and lower-income families caring for a
child with mental retardation have found much higher levels of depression
and poor health among parents.
In the four decades since Martha Billington was born, the prospects for
children like her have changed dramatically. Public Law 94-142, sometimes
called the civil rights act for people with disabilities, in 1994
enshrined in law a new and extensive body of legal rights for the
developmentally disabled — including the right to public education, to
accommodations and to timely state care. Programs such as Head Start, as
well as burgeoning research in special education, have changed views on
how early, how much and how continuously people with mental retardation
can learn. Improvements in health care have extended the lives of the
developmentally disabled to ages once thought impossible.
When Norma Billington was a student nurse in the 1940s, she remembers
being taught that children born with Down syndrome — if they made it
beyond infancy — would probably die before reaching adulthood.
"They were kind of dismissed, as if their lives didn't have any value
at all, and that used to bother me," says Norma. Breaking the shocked
silence of the delivery room after Martha was born, Norma's physician
urged her to place the girl in an institution as soon as possible.
Today, the expected life span of people with the genetic abnormality
called Down syndrome hovers at about 55 years — still shorter than that
of the broader population, but up from a median of about 35 years just a
few decades ago. Among other groups with developmental disabilities —
including those with Fragile X syndrome (a genetically inherited form of
mental retardation), fetal alcohol syndrome, cerebral palsy and autism —
better health care, including drug treatments and physical therapy, has
extended life as well. Among these groups, if an individual has no major
motor disability or respiratory illness accompanying mental retardation,
life expectancy is roughly comparable to that in the broader population,
says Wayne Silverman, a researcher with the New York State Institute for
Basic Research in Developmental Disabilities.
"Concerns about old age [in the populations with developmental
disabilities] are a very new thing," Silverman notes. But as people
with mental disabilities live longer, their aging process has yielded
insights — some unique to the developmentally disabled and some of
relevance to the broader population.
Among those with Down syndrome, for instance, some aspects of the aging
process appear to be accelerated. Their hair seems to go gray and their
skin texture changes at an earlier age than in the general population. For
women with Down syndrome, menopause sets in several years ahead.
Alzheimer's disease, the debilitating degeneration of memory and
intellect, is likely to set in earlier. And the risk of developing
Alzheimer's is far higher among those with Down syndrome, suggesting that
the 21st chromosome that is mutated in people with Down syndrome may also
play a role in Alzheimer's.
Norma Billington worries about Martha's risk of developing Alzheimer's,
but takes comfort in the strength of the new supports that she and East
Middlesex County, Mass., have built around Martha. Several years ago,
Norma designated a legal guardian for Martha and made financial
arrangements, both to take effect upon her death. Meanwhile, on a regular
schedule each week, a social worker takes Martha and her three housemates,
all of whom have a developmental disability, shopping and to the library,
and sees that medical appointments are kept. Without fail, Sunday is
Martha's day with her mother.
Reassured by such routines and coaxed through almost 15 years of special
education, Martha has accomplished more than Norma was ever told she could
expect. In the late 1960s, Norma remembers taking Martha to a state school
for tests to gain entry to a special-education program. Do you think she
could ever learn to read?, she remembers asking the psychologist
hopefully. "Oh, no, these children can rarely learn to read,"
the state's tester responded.
Today, Martha is an avid reader of geography books, and loves to regale
her family and friends with what she's learned on her weekly visits to the
library. A dedicated member of Weight Watchers, she tallies her dietary
"points" daily. At her job, she helps manage the paper flow of a
busy modern office. "I've often wished I could go back and tell
her," Billington says of the state psychologist.
What Martha needs to stay on track, says her mother, is a predictable
routine amid familiar surroundings. And that — with a few adjustments
along the way — is what she has gotten.
As she ponders the end of her day-to-day caregiving responsibilities for
Martha, Norma declines to congratulate herself on her steadfastness and
generosity in the face of naysayers.
"Having Martha has broadened my life. It's given me an experience I'd
never have had I just felt like this was my child, and it was my duty to
take care of her. And I enjoyed it."
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