Monday, November 15, 1999
Lifetime care a challenge to plan
Trusts key to disabled people's future
BY AMY HIGGINS
The Cincinnati Enquirer
Like most parents, Michelle and Scott Lang are investing money and planning for their children's future. The savings for 5-year-old Allison will likely pay for four years of college. The savings for 2-year-old Brian need to pay for the rest of his life.
“As with any parent, you'd want the best care for your child, whether they're disabled or not disabled,” said Mrs. Lang, of West Chester. “But he's going to need care for the rest of his life.”
Trying to fund that lifetime care, however, can jeopardize funding from state and federal programs, such as Medicaid and Supplemental Security Income (SSI). Through special trusts, however, there are ways to ensure that children like Brian (and the other 14.7 million disabled Americans) can have their basic needs met without forgoing a few extras — or making everyone around them broke first.
“So much education is needed for people,” said Marjorie Forrester, a certified financial planner with American Express Financial Advisors in Middletown. “Quality of life is as important as basic needs.”
Brian Lang was born with microcephaly, a disorder in which his brain is underdeveloped and abnormal. At 2 years old, he can crawl and pull himself up, but cannot speak or feed himself. His long-term prognosis is still uncertain, but it's likely he'll never be self-sufficient or earn a living.
So for now, there are medicines, therapies and special ists to pay for. Later in life, tack on shelter, food and other necessities. Also factor in that Brian loses his parents' insurance benefits when he be
comes an adult.
“You know how much it's going to cost for college,” Mrs. Lang said. “But when you get to the care of an individual for a lifetime, it almost does overwhelm you.”
Focused on future
For two years, Mrs. Lang has devoted her time to meeting Brian's day-to-day needs, including haggling with insurance companies and coordinating hospitals and specialists.
But now, she and her husband are starting to think about the future. In addition to beefing up their life and long-term-care insurance, they are in the process of writing a will and setting up a special trust for Brian's expenses that will not limit his federal benefits.
Mrs. Forrester said the trusts are complicated and easy to do wrong. She has heard of cases where disabled adults have inherited money, lost benefits and had to spend their money on life's basics, instead of the extras it was intended for.
Those so-called “extras” could include costs of visiting friends and family; televisions and radios; certain kinds of wheelchairs; protective helmets, like those Brian uses; and even their own burial expenses.
But the trusts don't skirt the system and burden taxpayers, Mrs. Forrester said. Called Medicaid Payback Trusts, the money in them can be used only for those supplemental services and goes back to Medicaid after the person dies.
“If people are uneducated about this, then it's done incorrectly, and it goes to Medicaid sooner rather than later,” she said. A similar type of trust, called a Pooled Trust, is available in several states, including Ohio and Indiana. Money leftover in the trust at the end of the person's life is doled out to other disabled people to help cover their supplemental expenses.
Older parents' dilemma
Bob Ritter recently set up a series of trusts to benefit his son, Tom Ritter, whom he describes as mildly mentally retarded. Even though the younger Mr. Ritter is 50 and has lived on his own for several years, his parents still want to ensure that he's provided for.
“We don't last forever — I'm 80 years old,” Mr. Ritter said.
Mrs. Forrester said many older parents like the Ritters are in a particular dilemma because of their age. They had and cared for their children during a time when not as many resources were available, and now, they might have to pay for their own long-term care as well.
According to the Association for Retarded Citizens, the life expectancy for people with mental retardation is well into their 60s. People with Down syndrome live about 10 years less.
“The big issue now is that parents in the late '60s, when their children were born with disabilities, they were told they would probably outlive the child,” Mrs. Forrester said. “Recent medical advances have changed that.”
That doesn't really apply to the Ritter family, who always anticipated that Tom would have a long life. Still, his parents know they're not going to be around forever to care for him. So, the duplex where he lives is owned by a partnership controlled by his siblings. A sister also acts as executor of the trust.
The younger Mr. Ritter earns a living as a janitor at Abilities First. Formerly the Doty House, it is a not-for-profit agency in Middletown serving people with disabilities. Mr. Ritter helped found it 41 years ago when he realized that his son was mentally retarded.
Qualified attorney needed
Tom Ritter's income pays his rent to the partnership and provides for other basics. A trust his parents set up will protect anything they are able to pass on. That money then can help fund things like Mr. Ritter's bird-watching hobby.
Mrs. Forrester stressed that the specialized trust be written by a lawyer concentrating in such areas and that it be updated every few years to stay current with changing laws and shifting circumstances.
“It has to be done by an experienced, qualified attorney,” she said. “If not done properly, they can lose.”
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