Parents try to understand special needs trusts

The parenting role of caring for special needs children never really ends. Even after a parent's life ends, special needs children will still need financial resources that will enable them to continue enjoying life.

Special needs is an umbrella term to include children who need extra care, whether they have a learning disability, mental retardation, terminal illnesses, developmental delays and a myriad of other complications.

"At age 18 special needs children may depend upon cash benefits from Supplemental Security Income and medical coverage from Medicaid whether living independently, with a family or in a group housing arrangement. These essential benefits do not allow for many extras and there are strict income and resource limitations to maintain eligibility," said Claire Watson Heartland Down Syndrome Association president.

Facing the fact that their special needs child will someday be left alone is not easy, but parents who believe they've done all they can to assure the best future possible for their children have a good chance at relief.

Special needs trusts can provide long-term financial security and a responsible disbursement of assets through the drafting of wills.

"Individuals with disabilities, their families and the professionals who represent them face a host of distinguished legal issues and other challenges unfamiliar to most of their peers," Watson said. "For instance, making sure a special needs child does not lose needed benefits like Medicaid, SSI or subsidized housing does not affect parents of children who are healthy and have no special needs. Setting up a special needs trust or choosing a trustee to manage the trust is another issue those parents don't face."

Heartland Down Syndrome Association vice president Theresa Essner, also the mother of a child with Down syndrome, said that she's been thinking of setting up a trust for her 7-year-old son Adam for a couple of years.

Essner has an older daughter and sister who are aware of Adam's needs, but she doesn't want them to have the extra burden of having to worry about him when she's gone.

"When I die I want things to roll smoothly," she said.

Essner said that if she set up a regular trust for her son the government could demand back payment for therapies he's received with their assistance, diminishing or eliminating a fund she worked hard to create. Her other fear is that with a regular trust the government may be able to determine what his needs are, changing his quality of life.

To see that Adam's needs are met, Essner works with him when he gets home from school with material from the National Association for Child Development.

"He's high functioning and I want to keep it that way," she said. "They test him regularly and write up programs after he's evaluated. He's a really good reader."

Essner said she discovered there were no local attorneys who dealt specifically with special needs trusts. This resulted in digging a little deeper to find the Special Needs Alliance, a not-for-profit organization comprised of attorneys who specialize in public benefits and disability. Many of them are parents and siblings of children with disabilities.

Essner, who has attended other special needs workshops, said this seminar was planned for the month of October to launch Down syndrome awareness month.

Janet Hume, a paraprofessional in the Jackson School District, said she is looking forward to attending the special needs trust seminar.

"I think its great that they're doing it. This is something all special needs parents need to know about. All special needs parents know planning is the key," she said.

Janet works with special needs children and has a son, Landon Hume, 19, who has Fragile X syndrome, a genetic abnormality of the x chromosome resulting in varying degrees of learning problems to mental retardation.

Landon, a senior at JHS, will attend high school another year. Landon receives job training through a school program and has worked and volunteered at local businesses for years. His mother is happy for the experience he's getting and hopes that when he graduates he will be able to find employment locally.

Landon also bowls on a Special Olympics team. His mother attends as many programs as she can that pertain to planning for Landon's future or about programs he could be involved in.

Janet has been looking into trusts for Landon, too.

"When he was smaller, it was always in the back of my mind," she said. "Being busy with doctor visits and therapies, it was something I didn't concentrate on at the time."

Janet said she is still learning about trusts in general and finds the topic complex and overwhelming.

"Sometimes you need to hear things over and over again before you understand them," she said.

She believes a trust is a safeguard so that a child can still be eligible for benefits. She has attended a seminar on the topic at a Fragile X conference.

"I hope the trust can ensure his quality of life," she said. "Who will take care of him? He may be able to live in a group home but will need help managing money and things like that. I don't think he can live totally on his own.

"And I want to be sure it will last throughout his life," she said. "If I do this I will feel better that I've done my best to take care of him."

Another duty Janet deems important is to write a letter of intent with her son's likes, dislikes, medications, dreams, aspirations, education and future living plans. She said that parents should create a trust but even grandparents who may leave something for the child should make provisions for the money to be channeled into a trust.

The Heartland Down Syndrome Association will hold a free seminar about special needs trusts that will include a question and answer period. "What you need to know about Special Needs Trusts" will be from 10 a.m. to noon Saturday, Oct. 11, at LaCroix Church, 3102 Lexington Ave., Cape Girardeau.

The seminar speaker is Martha C. Brown, member of the Special Needs Alliance. She is an attorney and partner at Oelbaum and Brown Law Firm in St. Louis. Membership to SNA is by invitation only and member attorneys are dedicated to the practice of disability and public benefits law.

Watson said the Heartland Down Syndrome Association wanted an extremely knowledgeable speaker to explain the complexities of special needs trusts.

"Results can be disastrous for our children if errors are made," she said. "We also wanted parents to feel comfortable that they are receiving objective up-to-date information at the seminar, not a sales pitch for a specific product or professional. As the parent of a special needs child, I want to do what I can to insure that she has the care she needs, a good quality of life, and that I am contributing to her future, even if she is reliant on government benefits for some of those needs. For parents of children with special needs, it is very difficult to come to terms with the fact that we will not always be here to take care of them, but we must face that fact."

cpagano@semissourian.com

335-6611 ext. 133