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Article of Interest - Planning Ahead

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Bridges4Kids LogoPlanning For a Disabled Child's Future
Parents make provisions for the years after their own passing.
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 an underestimate.

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 ones.

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 others.

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 gone.

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 for her."


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 site is

The state Developmental Disabilities Council's Web site is  


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