- The Washington Times - Monday, April 18, 2005

Harriet Cohen says one of her mother’s greatest fears before she died was that her mentally retarded daughter would be put in a group home by the state.

Instead, Mrs. Cohen used money from her mother’s estate to set up a trust account to care for her sister, who is now 55 years old and works part-time as a supermarket bagger.

“If she didn’t have [the trust] and didn’t have me, she would be in a group home and just existing,” said Mrs. Cohen, a medical technologist at Children’s Hospital in Philadelphia.

Mrs. Cohen’s sister is one of the disabled people who was saved from being institutionalized as a ward of the state. Others are not so lucky.

In Maryland, for example, about 4,800 disabled people live in state-sponsored assisted-living homes, according to the Maryland Department of Health and Mental Hygiene.

Social workers say many of them could live more independently if their parents had arranged for their financial futures.

Often, the parents seek advice on planning their children’s finances from their doctors, who are ill-equipped to handle the situations.

“Many families either don’t think that far into the future or they mistakenly believe that all of their child’s needs will be met through [government Supplemental Security Income] benefits and other public services,” said Brian Cox, executive director of the Maryland Developmental Disabilities Council.

Michelle Hart, the council’s public policy co-director, set up a trust and made a will with her husband to take care of their 4-year-old son, Jackson, who has severe congenital brain and spinal disorders.

“We also made sure several family members were lined up in case something happened to us, so they would be able to take care of Jackson,” she said.

The U.S. Census Bureau estimates that about 10 percent of Americans between 16 and 64 years old have some form of physical, mental or emotional disability.

However, 29 percent of the 1,718 parents surveyed in a study by insurance company MetLife said they made no plans to care for their disabled children in the future.

Sixty percent of parents said they do not expect their disabled children to be financially independent, but 68 percent of the parents have not written wills.

In addition, 27 percent of the parents said they expect their children to be lifelong financial dependents.

“Parents face a planning gap because they cannot find the information they need, don’t have the time to look and are unprepared financially,” said Nadine Vogel, a MetLife vice president who is mother of two special-needs children.

A common mistake is for parents to leave their estates to their disabled children in a lump sum, according to disability advocates.

If the disabled people have more than $2,000 in their savings or checking accounts, they lose government benefits, such as Social Security.

A better option is to appoint a trustee and set up a special-needs trust with the money. Then, the children get the proceeds of the trust investment while retaining their eligibility to government benefits.

The need for the financial planning grows as medical care improves.

“For people who are medically fragile, that has been a significant factor in extending their life spans,” said Mary Jo Randall, spokeswoman for Bart Stevens Special Needs Planning, a Scottsdale, Ariz., firm that helps parents plan the financial futures of their disabled children.

“Many of these kids can be very medically involved, so there’s a great deal of financial forecasting that needs to be done,” Miss Randall said.

The MetLife study also said:

• 88 percent of parents who have children with special needs have not set up a trust to preserve eligibility for benefits such as Medicaid and Supplemental Social Security.

• 72 percent have not named a trustee to handle the child’s finances.

• 53 percent have not identified a guardian for their child.

Several written guides are available to help parents make financial plans for their disabled children, including some from the Maryland Developmental Disabilities Council and the Easter Seals Society.

The Maryland Developmental Disabilities Council’s 131-page Planning Now guide can be downloaded at its Web site, www.md-council.org.

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