Sabine Glanzman was born with a rare medical condition. It helped land her in intensive care at birth and left her mentally retarded. While only a handful of Americans have a similar malady, a few have also developed severe medical problems, her father, David, confides.
Knowing that she would always need special care, Sabine’s parents took some unusual steps–establishing both financial and physical successor guardians and a special type of trust–to plan for their child’s future.
The roughly 10 million Americans who care for a relative or child with a disability would be wise to take note. By taking a few steps early, parents can maintain a certain quality of life for their disabled child, even after the parents are gone.
“If you have a child with disabilities and you are not immortal, at some point somebody else is going to have to be taking care of the child,” says David Glanzman, a professor at UCLA. “I’m sure that every parent who has a disabled child has thought seriously about what they have to do for the future when they’re not around.”
Unfortunately, parents may think about the possibilities, but many don’t plan for them adequately, says Patricia Williams, a Glendale, Calif.-based attorney who specializes in representing children with special needs. And the results of failing to plan can be disastrous.
That’s partly because disabled individuals qualify for certain government benefits, including health insurance and, in some cases, special schooling and even institutional care. However, an inheritance, even a relatively small one, can disqualify these individuals from receiving most government aid.
An inheritance can cause the disabled individual to be removed from a group home or a special school, says Williams, who is the co-author of a self-help special needs planning program called “Dignity by Design.” It can also trigger cancellation of government-sponsored health insurance benefits–and with those benefits often go caregivers that have long provided the disabled person with both medical and psychological support.
“When the second parent dies, a person with mental retardation or autism isn’t just losing a parent, they are losing their primary care and support, their conduit to the outside world,” says Williams. “If the family has not made a plan as to how that transition can be done, it can be just catastrophic. They may no longer qualify for all the public programs that they depend on.”
Planning for a disabled child requires several steps, experts add.
The first, and sometimes most important, is lifestyle planning, notes Randee Cook, a Greeley, Colo.-based certified financial planner who specializes in this area.
Why? Disabled individuals often have routines that take on extraordinary importance. Those routines may be something simple, such as having a particular snack or watching a particular program on television. If the routine is upset, the disabled individual can be inconsolable.
Caregivers should chronicle some of these important routines, as well as dietary preferences and, in some instances, special signals that have a meaning that might not be understood by someone else. That way, if the primary caregiver must shift for any reason, someone else will be able to carry on with a minimum of problems for the disabled person.
The second step involves considering who will serve as this person’s advocate when the primary caregiver, usually a parent, is gone, says Williams. Even when the disabled individual is in a government-sponsored group home, it’s wise to have a friend or family member, who understands the disabled individual’s desires, empowered to act on the disabled person’s behalf. Then, if the institution or individual who provides daily care for the disabled individual ever becomes insensitive or abusive, the advocate is legally empowered to intervene.
The final step is financial. If the parents have money to provide some support for this child before and after they’re gone, they would be wise to set up something called a special needs trust, Williams says.
What this trust does is set up a formula to provide little extras–the products and services that help maintain the disabled individual’s quality of life. That may be occasional tickets to a baseball game, or it may be funding for transportation to and from friends’ houses or a special school or program. It also could provide money for something as simple as art supplies. The formula set up in the trust both sets out how the finances work and who handles them, Williams adds.
However, the special needs trust must not provide money for food, clothing or shelter if the disabled individual hopes to continue to qualify for government benefits, Williams cautions. If the child is left money outside of the trust, or if the trust’s assets can be used to provide these needs, the individual’s government benefits are likely to be cut off.
“We call it (this trust) the `parent’s pocket,’ ” Cook adds. “Parents are constantly dipping into their pockets to provide something for their kids. What this trust does is create a pocket that survives even when the parents are no longer around.”
