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From right: Tammy and Matt Syverson, their twins Sophie and Grace, 11, and Lily, 5, who has Down syndrome, at the New Horizon Ranch in Rantoul, Kan., Oct. 11, 2012. Managing the affairs of a special needs child or sibling may present issues that can divide a family and raise the fear of divorce.

Steve Hebert, New York Times

A psychic toll must be paid in a special-needs house

  • Article by: RON LIEBER
  • New York Times
  • November 3, 2012 - 4:35 PM

Most people caring for a family member with special needs eventually assemble a financial checklist of sorts.

They put together a team of health, legal and financial experts who understand their family member's condition. Then comes the estate plan and making sure they understand the eligibility rules for any state or federal benefits.

Checking these items off, however, often proves to be the easier part of special needs planning. The harder part springs from two challenges that are ultimately rooted in emotion and behavior. It's the psychological side, after all, that often plays a big role in just about every major financial decision.

The first is the question of where a special needs child or sibling should live. The second is not letting the stress of managing the affairs of a special needs family member contribute to the end of a marriage or other long-term romantic partnership.

When Alice Walther's son was small and experiencing developmental delays, she and her husband took him to a major children's hospital in the St. Louis area. A top doctor there told them that he was severely retarded. "He said to put him in a home, that it will ruin your family," she recalled.

Her son Sean is now 43, and he never left his family's home. He works part time at a library and pursues his passion for golf in his spare time, watching tournaments on television and maintaining a collection of scorecards from all over the world that is so large it takes up three bookshelves.

"He's gotten so used to his own room and his own bathroom that he wouldn't fit into a group home, quite honestly," Walther said.

Mary Anne Ehlert, a financial planner in Lincolnshire, Ill., who specializes in advising people with family members who have special needs, has heard versions of this before. Her own late sister, who had cerebral palsy, lived with her parents as an adult before her parents finally decided to have her move out.

"You want to keep them totally in a bubble," she said. "But it's not in their best interest, and it's not what they want. The problem is, if the parents die, then what?"

Walther's other son Michael, a financial planner himself, has thought through every angle of his younger brother's situation. He sees things as Ehlert does and thinks his brother should move out of his parents' home sooner rather than later.

"Change is not something he does well with," he said. "If we were to introduce it at the same time as the loss of a parent, that's going to be an awful lot to swallow." Their parents have a plan for this. "The minute one of us goes, the two who are left will move into assisted living," Walther said. Meanwhile, they're building a financial war chest for that moment, in part by living in the same house they have been in for 45 years.

Once Sean's other parent dies or is close to death, Mike plans to move his brother to the Chicago area where he lives. He's made peace, more or less, with his parents' decision about where Sean will do best in the meantime. "They're going to win this argument while they're alive," he said. "And I'm going to win it when they're dead."

The elder Walthers will celebrate their 49th wedding anniversary next month, but not every couple is so lucky.

Christopher Currin, a financial planner in Dallas who has an 18-year-old son with Down syndrome, knows of a family that ended up paying for three residences after a divorce. One is for the mother, one for the father and one is the house they used to share. They didn't think their child with special needs could easily move back and forth from one residence to another, so the parents trade off moving back in.

Currin's marriage is intact, but as someone who has counseled many families with special needs relatives, he understands why many partnerships do not survive. "One person in a couple with a child whose disability was unexpected may have difficulty accepting it," he said. "A deeper wellspring of love may open up in one of them, while the other goes to that well and finds it empty."

Some people also turn to a higher power when faced with a different sort of parenting challenge. "It can reinforce or cause someone to rediscover religious feelings," he said. "But others might be cast into doubt that can lead to losing faith."

The advantage to frightening, if exaggerated, divorce data is that it might nudge people into some preventive marriage counseling. Or if not that, the persistent, low-grade fear of a failed partnership may at least encourage people to invest in quality time as a couple.

Currin said he was particularly grateful for the respite programs that Methodist churches in his area have offered over the years. There, special needs children and their siblings can spend an evening with others like them while their parents get a few hours alone.

"We don't ever use the D word," said Matt Syverson, a financial planner in Overland Park, Kan. He and his wife have twins and a younger daughter, Lily, who has Down syndrome. "We don't ever need to go there. We make the best with what we've been dealt, and with God's help we keep getting through it."

In fact, now that Lily is in kindergarten, the Syversons have decided to add another child to their family. In the spring, they hope to adopt a boy they've named Levi and bring him home from China. He has a severe heart ailment, and once he's moved in, they will cross their fingers when the time comes for the surgery that will give him the best chance at a long life.

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