An article in the Business section on March 31 incorrectl described the relationship of the two principals of a Bowie firm, Estate Planning for the Disabled, to Metropolitan Life Insurance Co. Both Emad Alwan and Edward Massagli have previously worked as financial planners for Metropolitan Life, but neither is employed there at present. Mr. Massagli is an attorney.
The Sun regrets the error.
The first shock, Joe Ann Kuhn says, came in 1969 when hehusband, Paul, learned at age 36 that he had multiple sclerosis. Then, four years ago, Mr. Kuhn suffered an MS attack that had the destructive force of a stroke.
"He couldn't even roll over," said Mrs. Kuhn, 55, an office manager in Annapolis. "I suddenly realized, if something happens to me, what in the world happens to my husband?"
Like other families where one member has a chronic, debilitating illness such as MS or a developmental disability such as mental retardation, the Kuhns discovered there is no easy answer to the question of how to provide for the disabled person when a spouse or parents die.
Medicaid, for example, would pay for Mr. Kuhn's care in a nursing home, but only to the extent that he could not afford that care on his own, Mrs. Kuhn said. Any funds left to him in her will would have to be used up before Medicaid kicked in, she added.
Medicaid also does not provide for such lesser amenities as optical care or for the sort of activities -- like visiting relatives -- that make life pleasurable for people whose illness or handicap prevent unassisted travel, she said.
While friends suggested that the Kuhns' 34-year-old son and 28-year-old daughter could be counted on to take care of their father if Mrs. Kuhn died, she discounted that idea.
"If anything happened to me, I know my kids would do their best. But they're young. They're raising their own families. If I'm gone, I would want to ensure that Paul has a good quality of life without being a burden to them," she said.
Achieving that is one of the hardest tasks Mrs. Kuhn, and spouses and parents like her, face, said Ralph J. Moore Jr., a Washington lawyer who has written a handbook on estate planning for families of persons with developmental disabilities.
If parents and spouses don't make arrangements for the care of a disabled family member after their death "the law will make arrangements instead," said Mr. Moore, whose handbook is published by the Maryland State Planning Council on Developmental Disabilities.
If, for instance, a disabled child inherits more than $2,000 worth of savings or real or personal property -- what the federal law calls "resources" -- he or she will not be eligible for Social Security benefits, he said.
Many parents put off planning until it's too late, said Albert S. Barr III, a Baltimore lawyer who specializes in estate planning and is himself the father of a handicapped child.
"Often, in their heart of hearts, parents think, 'Nobody can care for this child like I can, and I don't know who will do it when I'm no longer around.' So they don't face up to the question for years, and no planning gets done," he said.
Experts in estate planning admit that information about how to provide for a disabled person is often not readily available. Last -- December Gov. William Donald Schaefer appointed a blue-ribbon panel of lawyers, health-care providers and parents of disabled children to study ways to make such information accessible to the general public.
The panel, officially called the Governor's Task Force on Long-Term Financial Planning for Disabled Individuals, plans to recommend legislation to the General Assembly when it meets next year, said Randall D. Van Dolson, a Baltimore lawyer who is coordinating a task force subcommittee on proposed legislation.
The panel will also hold meetings this year throughout the state "where parents can come and get information and tell us what they'd like to see done. So many people don't make plans because they don't know how to," Mr. Van Dolson said.
Families with a disabled member sometimes also fear being taken advantage of because they are emotionally vulnerable, experts in the field say.
"I didn't want to go to just anybody," Mrs. Kuhn said of her decision to seek professional help in making provisions for her husband's care. "With legal documents you can think you're doing well-meaning things, and you end up just hurting people."
After consulting with friends and organizations for parents of disabled children, Mrs. Kuhn consulted Emad Alwan and Edward Massagli, who recently opened an office of Estate Planning for the Disabled, a national nonprofit organization, in Bowie.
For $750, Mr. Massagli, a lawyer with Metropolitan Life Insurance Co., prepared wills for both Mr. and Mrs. Kuhn and trust documents designed to protect Mr. Kuhn's interest in properties they hold together.
Mr. Alwan, an insurance agent with the same company, advised Mrs. Kuhn on investments that would yield money for the care of her husband and her elderly mother, who is living with the family.
Although Mr. Massagli and Mr. Alwan earn commissions on any insurance they sell, "I knew about all the fees up front," Mrs. Kuhn said. "I felt they were very fair."
Added Mr. Alwan: "Our purpose is not to sell insurance -- it's to help families."
If you need help planning for the care of a disabled family member, be sure to seek out advisers who specialize in this complex and often changing field, the experts say. If you haven't been able to face the task of
making plans, consider these issues:
* What will happen to my property when I die? Will it be used for the care of my disabled child or spouse?
If you don't have a will, much of your property will pass to your spouse and/or children through rigid state inheritance laws. Your disabled spouse or child will receive a share, just like other family members.
But unlike them, the disabled person might never see his or her share. Disabled people who receive publicly funded residential services are liable for the cost of those services. The state can enforce this liability against any assets, inherited or otherwise, that the disabled person has.
"If you don't distribute your assets in such a way that the state can't reach them, you won't be doing a thing for your child's quality of care," Mr. Barr said. "That money goes into the state's general fund and might pay for a boat for the governor or something like that."
* Where should my disabled child's inheritance go? How can I be sure it will be used to make his or her life more comfortable?
Experts urge parents or spouses of disabled persons to put their inheritance into a so-called "discretionary" trust, where an independent trustee has the right to decide how much of the money goes to the disabled person.
But some people still insist on giving the money to other family members, with instructions to use it for the disabled person's care.
This so-called "informal trust" arrangement hardly ever works, the experts say. "If you set things up so that your child can get an advantage for himself financially by committing his disabled sibling to an institution, that's going to happen sometimes. Children don't always justify their parents' opinions of them," said Mr. Moore.
Even with the best of intentions, Mr. Massagli added, "a sibling can have financial problems, like a divorce or bankruptcy, and the 'best' situation turns into the worst."
* How will someone else know how to take care of my disablechild after I'm gone?
Put it in writing, the experts say. Take the time to sit down ancompose a thorough, exacting "letter of intent," covering your child's vital statistics and details of his or her lifestyle, from housing to daily living skills to favorite pastimes and religious activities.
Estate Planning for the Disabled has prepared an exhaustive checklist for clients to consult before writing their letters, Mr. Alwan said.
"A letter of intent gives direction and guidance to your family, your friends, even a social organization that may be seeing to your child's welfare. With it, they'll be better able to do a good job."
Sources of help in planning for the disabled:
* PLAN of Maryland-DC, Inc. Planned Lifetime Assistance Network, a non-profit organization in Silver Spring, serves chronically mentally ill persons living outside of a hospital setting. Services include help in finding housing, monitoring medication, assuring the receipt of government payments, etc. One-time processing fee of $300, plus $50 per hour fees for services. 301-587-7815.
* The Maryland Trust for Retarded Citizens. Located in Westminster, the trust is a non-profit organization associated with the Maryland chapter of the Association for Retarded Citizens. The trust supports disabled people after their parents die or are disabled.
Services include monitoring the health and progress of a disabled person in a day-care or residential setting, serving as advocates for disabled person's rights, remembering birthdays and personal needs, etc. One-time membership fee of $2,000. 301-876-1836.