Sue Shellenbarger / Work & Family Column I Wall Street Journal - May 29, 2003
Ever since he began talking, Joan White's son Michael, now 20, who is disabled and unable to read or write, has been begging her regularly for one reassurance: "Mommy, say you will never die."
Michael's disabilities, including cerebral palsy, retardation and epilepsy, prevent him from holding a regular job. He can't imagine how he will get along after his mother is gone.
Ms. White, age 56, can't imagine it either. A single mother who lives in Yonkers, N.Y., she is trying to plan for her son's future. But the cost and complexity are overwhelming. "I'm afraid for Michael," she admits, "which is why I have to live forever."
Financial and care planning for the nation's 8.5 million disabled children and young adults poses a growing predicament for parents. While such children died young in the past, they're now outliving their parents by decades. The average life span of a Down syndrome child, for instance, has doubled to 50 years from 25 in a single generation, says the University of Minnesota's K. Charlie Lakin, a prominent researcher.
Yet only about 10% to 20% of families with disabled children have done much financial planning, estimates Matthew Valenzano, general manager of Exceptional Parent, a monthly magazine based in River Edge, N.J.
To plan well, these parents must face not only the open-ended financial needs of an extraordinarily vulnerable and needy child -- they must also embrace their own mortality. Their challenges bear lessons for all parents:
Facing mortality. Caring for a special-needs child can be so all-encompassing that it's hard for some parents to deal with the reality that they can't do it forever. Consciously or not, some hope for a miracle drug to heal their child, says Christopher Sullivan, manager, special-needs financial services, for Merrill Lynch. Others cling to the idea they will outlive their child. For many, the long journey toward acceptance begins with a single step -- attending a meeting or signing up for an appointment with a financial planner.
Kassie Lewis, Westminster, Md., whose son Jeremy, 15, is retarded, wheelchair-bound and has cerebral palsy, at first fought school officials' advice that he switch to a "life-skills" curriculum from the academic track. Against all odds, she had hoped for more for him. Yet at 50 and suffering from osteoporosis, Ms. Lewis knows she can't handle his physical care much longer.
A teacher she respects finally persuaded her to attend a meeting next month about residential and work programs for Jeremy to permit him to live independent of the family. She's struggling with the need to let go. "In some cases," she says, "what is best for the child may be the hardest thing the parents have ever had to do."
If you don't have enough money, make plans with what you have. Few families with severely disabled children can save enough to meet their overwhelming financial needs, which can run as high as $40,000 a year or more for a residential program. Like families who avoid saving for college, some parents of special-needs kids are so daunted by the numbers that they can't get started on a plan.
But even with relatively small sums, laying sound plans can make a difference in the quality of a disabled adult's life. Government programs -- the federal Supplemental Security Income program and Medicaid -- cover food, clothing and medical care. But they accept only recipients with less than $2,000 in personal assets and support just a bare-bones lifestyle, with personal allowances running as low as $30 a month in some states.
Setting up a special-needs trust enables a disabled adult to draw on family funds for supplemental needs, such as education, travel and entertainment, while still receiving SSI and Medicaid. Inheritances, life-insurance proceeds and family gifts can be placed in the trust to use as needed to provide a better quality of life.
Merrill Lynch requires a minimum of a $100,000 life-insurance policy to fund a special-needs trust. For families who can't afford that, pooled trusts allow smaller investments. Pooled trusts exist in about half the states and are operated by nonprofits, such as the Arc, a Silver Spring, Md., advocacy group. They pool assets among groups of families and manage them for disabled clients.
Prepare to pass the baton. The toughest part of planning for a disabled child, parents say, is finding and asking someone else to take over day-to-day care if you can't do it yourself. Guardians usually are family members, but a disability advocacy group may help find or provide guardian services if none are available. A directory of such groups can be found at www.nichcy.org .
For Dan Platt, 46, and his wife Marilyn, 52, the idea of naming a guardian was so daunting that they delayed planning for their son Ryan, 11, who has Down syndrome. Ryan can't speak, and naming a guardian meant entrusting someone else to decipher his wants and needs. For years, Ms. Platt mentally avoided the issue. "I just couldn't live with it," she says.
Eventually, the Platts, of Stockton, Calif., did call on family members, and they were gratified by the response. "Even though you're close to your family, you don't know how to ask these questions: 'Would you take care of my child forever?' " Ms. Platt says. But Dan's parents readily agreed to serve as guardians if the need should arise, with his sister playing a backup role. The Platts were pleased, Mr. Platt says, at how willingly their loved ones stepped forward.