More with Down syndrome outliving their parents

Leah Fisher, 9, (right) does her homework with her sister, Emma, 6, in the dining room of their Crystal Lake home. Leah, who has Down syndrome, underwent open heart surgery to repair three holes in her heart at the age of 15 months.
Leah Fisher, 9, (right) does her homework with her sister, Emma, 6, in the dining room of their Crystal Lake home. Leah, who has Down syndrome, underwent open heart surgery to repair three holes in her heart at the age of 15 months.

Eight-year-old Leah Fischer was born with three holes in her heart.

A congenital heart problem is one sign of Down syndrome. About 40 percent of the children with the syndrome have congenital heart defects, according to the National Association for Down Syndrome. There were other signs that Leah had at birth – a lack of muscle tone and a symptom called “simian cross” on the palms of her hands.

The three holes in her heart were closed, one with a Gore-Tex patch and one with a stitch, and one healed on its own.

Addressing the medical problems that accompany Down syndrome is helping patients with the condition to live longer. But it also brings extra worries for parents later in life.

Who will tend to children with Down syndrome when they become middle-aged adults, after their parents are gone?

The life expectancy of people with Down syndrome was about 25 in 1983. But medical advances have increased that to about 55 years, with many people with Down syndrome living into their 60s and 70s, according to the National Association for Down Syndrome.

“We’ll keep her as long as we can,” said Michael Fischer, Leah’s father. “Maybe she will be living in a group home. Maybe we will keep her at home with us. We will do whatever she wants.”

Michael Fischer, 41, said he and his wife, Mary, 39, were weighing their options whether to establish a special-needs trust now or rely on Social Security when Leah turned 18.

Leah attends Coventry Elementary School in Crystal Lake, where she is in the adjusted-learning program.

“Leah reads on a first- or a second-grade level, and she’s doing basic math,” Michael Fischer said. “The teachers there are so passionate about what they do. We’re just thrilled with her progress.”

Fischer sees his daughter growing up, getting married and having children.

“In the past, from a person with Down syndrome, you expected the functionality of a 7-year-old,” Fischer said. “That’s because when they reached that level, you stopped teaching them. Younger people with Down syndrome have a lot more life skills. As long as you keep on teaching them, they’ll keep on learning. You rise to the level of your expectations.”

Fischer said the far-off future for Leah was not something that he and his wife had discussed yet. But it’s something that he’s been thinking about.

Those who work with people with Down syndrome encourage parents to plan ahead.

“The natural parent is not automatically the guardian of an adult child with Down syndrome,” said Michele Bianchi, who works at the Pioneer Center for Human Services in McHenry. A judge decides that.

Bianchi suggested that a younger sibling or younger family member be groomed to become the guardian because the natural parents might become unable to do so in old age.

Bianchi runs the day program at the Pioneer Center for those with Down syndrome who are senior citizens. The day program is open from 7:30 a.m. to 4:30 p.m. to those 50 years and older. The oldest participant is 76.

Of the 40 seniors in the day program, 11 have Down syndrome and come from a variety of home settings, including group homes.

Funding for the day program comes from the Department of Human Services, the McHenry County Mental Health Board, and from a referendum to levy a tax in McHenry County for senior programs, said Dan Haligas, vice president of programs at Pioneer.

And several go for regular health and well-being check-ups at the Down Syndrome Clinic in Park Ridge.

“They help us a lot,” Bianchi said. “Their doctors come out here for visits. It is a wonderful clinic that treats the whole person.”

Carl M. Mook, with Sycamore-based Protected Tomorrows, is a licensed advocate who handles life planning issues for families who have special-needs members.

“Your retirement plans become you planning for three people instead of two,” Mook said. “You’ve got to get your finances in order and start making plans as early as possible.”

The cost of medical services and housing for a person with Down syndrome, Mook estimated, runs $50,000 to $60,000 a year.

“That cost sounds right, but it is for a person without extraordinary symptoms, who is somewhat independent,” said Cindy Sullivan, executive director of Options & Advocacy, whose services are available to people who are living in or have significant ties to McHenry County.  

Sullivan said her organization was connected to the Illinois Department of Human Services and was “the doorway” for applying for state aid that would cover a stay in a group home.

Sherri Schneider, who is a qualified retardation professional with the Center for Enriched Living in Riverwoods, said she had heard of yearly expenses for private housing going as high as $200,000 for people with severe disabilities.

Schneider said that at a state-subsidized group home in which room and board was covered, the parents should expect to pay as much as $7,000 a year for clothing; entertainment, such as going to the movies and bowling; and teeth cleaning.

But the abilities and supervision required for people with Down syndrome can vary greatly.

“And there are some people with Down syndrome who have jobs and live in their own apartments,” Schneider said. “And they have someone drop in to make sure they’re eating, that there are no bugs in the place, and they are paying their bills.”

Click to watch a video about a family with Down syndrome
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