For a Disabled Child's Future
Parents make provisions for the years after their own
by Brynn Grimley, The Seattle Post-Intelligencer,
September 1, 2003
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Meet Janet Taggart. Her days begin at 6:30 a.m., when she must
rush to help her developmentally disabled daughter get ready for
her adult day care program while tending to her 95-year-old
mother at the same time.
Taggart, 73, lives with and cares for her mother, her
77-year-old husband of 51 years, Phillip, who is legally blind
because of diabetes, and her daughter, Naida, 46, who is in a
wheelchair and has a seizure disorder, cerebral palsy and
limited ability to speak.
"I've never thought about it," she said of her caregiver role.
"She's just my mother; she's just my kid. There's nothing
unusual about it, it's just my life."
With such a hectic schedule, it's hard to imagine that Taggart
and her husband have had much time to make plans for their
daughter's care after they are gone. But unlike growing numbers
of aging parents in similar circumstances, they have.
Taggart is one of hundreds of parents in Washington state who
are faced with the reality that -- unlike in years past -- their
developmentally disabled children likely will outlive them.
Recent data from the Arc of Washington, a non-profit
organization that serves people with developmental disabilities
and their families, showed that 1,230 developmentally disabled
people in the state who are over 40 live with family members who
are over 60. But a spokeswoman said that figure is most likely
The Arc of King County, one of 11 local Arc branches in the
state, began a senior family caregiver support program because
it realized many parents in their 50s weren't thinking about
long-term planning for their children.
Nancy Meltzer, coordinator for the Arc of King County, guides
families through the steps of long-term care, explaining the
importance of early planning.
"The goal is to build trust with the families," she said.
"Because I have a child with (developmental disability), I have
gone through what they're going through, and once (the trust is
built), I then ask the harder questions."
The state Aging and Disability Services Administration has
organized training sessions to inform caregiving professionals
and families about issues such as aging and long-term planning.
And the state Developmental Disabilities Council, whose members
are appointed by the governor, recently worked with the
Legislature to create an Endowment Trust Fund for
developmentally disabled residents.
The Legislature has dedicated $5 million to match funds for the
trusts, which make it possible for parents and other family
members to save for the future, specialized needs of their loved
In her experience as an adviser to aging parents, Meltzer said
many of them don't think about long-term planning for many
reasons, ranging from unwillingness to accept their own
mortality to the complicated laws geared toward long-term care
of a developmentally disabled child.
"The parents are very confused about the benefits their child is
entitled to," she said. "By coming to me for help, they are on
the right track to get all that is possible for their family."
She explained that her job is to walk families, sometimes
parents but most often siblings who are thinking about the
future, through the process of building a trust fund for the
child and finding a legal guardian and a place for them to live
once their parents are gone.
A lot of times, Meltzer said, families can lose money because
they don't understand the system, or they can overlook benefits
because they don't know the right questions to ask.
She said it's ideal when families can address planning issues
together and talk to others in similar situations and learn
about their decisions. She also stressed that it's never too
early to start planning.
For Taggart, planning for her daughter's future has remained a
constant theme throughout Naida's life.
She and five other mothers of developmentally disabled children
challenged the educational system in the late1960s when they
were told their children could not attend public schools or
partake in Sunday school activities because they weren't like
The women pushed for equal educational opportunities for all
students, researching and gathering data for the Education For
All bill, which was passed in 1971 by the Legislature. The
concept ultimately made its way into federal law.
"Almost universally the information we got from doctors was to
put our children into institutions," Taggart said. "You have to
remember, though, that it was a different era, but I couldn't
imagine putting her into one."
Instead, she and her husband chose to keep Naida at home and be
her primary caregivers while she attended school and other
daytime group activities. Now, Naida spends her days with an
adult day care service, where she is able to enjoy prescribed
activities and catered food.
This is the life her parents hope she will enjoy once they are
Taggart explained that eight years ago she and her husband set
up a trust for Naida, on top of certificates of deposit in her
name, that would not interfere with the benefits she receives
from the state.
They also left their house in her name, and said their
26-year-old daughter, Mamie, who is close to Naida, will most
likely be her guardian after they die. As a guardian she will
help make decisions in Naida's best interest, including who her
roommates will be and who will become her caregiver.
Although Taggart acknowledges that her life isn't as glamorous
as it was years ago, with trips to the family's summer house and
vacations across the world, she said she's happy that her life
now is filled with family. She also said she's confident in
their planning for Naida's future without them -- although she
doesn't plan on leaving anytime soon.
"When you reach a certain age, you begin to think more seriously
about what you plan to leave behind," she said.
"The reason I am not worried is (because) we've worked very hard
ON THE WEB
Parents who need help planning for the future of their
developmentally disabled children can visit the Arc of
Washington State's Web site at
Specific information about the Endowment Trust Fund for
developmentally disabled residents can be found at
The state Aging and Disability Services Administration's Web
The state Developmental Disabilities Council's Web site is
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