A future without his father is not something Dane Boger thinks about.
His life at the moment is full, with school, work, recreation and a social life, like many other young adults born with Down syndrome.
“He is 19 and ornery as a junkyard dog,” Darrell Boger says of his son and roommate. But Boger, who is divorced, thinks every day about how Dane will someday be expected to manage without him.
“It’s a really scary thing,” says Darrell Boger, 46, knowing that Dane’s special needs will continue, probably long after he is gone.
Such fears are common for families whose loved ones live with developmental, mental or physical handicaps. How can they provide for the physical and financial needs of their child?
For starters, if the person has special needs as a child, parents usually hire an attorney to formalize their status as the child’s legal guardian beyond age 18.
What plans need to be made after that depend upon many factors, but the severity of the person’s handicap is the first thing to consider: Are they able to care for themselves with just a little guidance, or are their abilities so limited that they will need intensive help from multiple sources for the rest of their lives?
The ability of other family members to step into the guardian role after the parents have died is another concern.
“Dane has a sister that hopefully will help in that way, if she still is living in the area,” Boger said.
If there isn’t a family member who can act as a legal guardian, there are other options.
The Kansas Guardianship Program, for example, is a state-funded program that seeks volunteers to act as guardians for people who have no other family to look out for their interests. Usually, people who need the program already are receiving government benefits but still need someone to help make medical, housing or financial decisions for them.
“Families can make some arrangements with attorneys through their wills,” said Pat Weimer, who runs the guardianship program in the Wichita area offices. Many times, there is no family to survive the person with special needs.
“It really is a plus when families can designate someone they already know to help carry out their wishes,” she said.
One thing many parents know they can’t do is leave a large inheritance to their child, if they want the child to continue receiving benefits that pay for services they need and probably already receive. If the large inheritance does run out, the person who once received benefits probably would be forced onto a waiting list before the services could be re-established.
“Dane never will live fully independent, so, from a financial standpoint, I have to do one of two things: I have to make him poor or I have to make him really rich,” Boger said. “If he’s sort of rich, he won’t get the government benefits he needs.”
Boger said he and his ex-wife became Dane’s legal guardians, permitting them to help make personal, medical and educational decisions that affect him. Boger also set up a trust in his own name, allowing the money he contributes to be put entrusted for Dane’s later use. At some point, a conservator will have to be assigned to oversee the trust.
“But you have to be careful with that,” he warned of trusts. “If the trust gets too big, the government thinks you’re cheating on them.”
That’s the trickiest aspect of financial planning for persons with special needs. As one Internet Web site puts it: “The tax code was not written with their needs in mind. And public programs aimed at helping kids can sometimes backfire on them and their parents.”
If the parents’ income is high enough that inheriting part of an estate could jeopardize their benefits, it may be best to disinherit the child with special needs in order to keep their benefits in place. Trusts that require income distributions can cause the same problems.
A special-needs trust, such as the one Boger set up for Dane, is a discretionary fund intended to be used for things like vacations, a special event or an advocate — items or services that would improve the disabled person’s quality of life, yet are so modest they do not jeopardize their assistance benefits.
