"In Trust," for our Special Children by Anne Huff

In 1997, at the age of 12, my daughter Emily was diagnosed with childhood-onset schizophrenia. When my husband died in 2000, leaving life insurance money for each of our children, on the advice of an attorney I established a Special Needs Trust for her. Given the uncertainty of the future, it was reassuring to know there would be funds available to provide for her "extras."

When Emily turned 18 and her health coverage changed, the District DHHS office requested a list of expenditures from her Trust in the past year. I was told certain expenditures from the Trust would be countable as income to Emily. After attempts to clarify what constituted "certain expenditures," we only knew that payments for education or healthcare would be exempt. Managing Emily's illness has sometimes necessitated relying on the Trust for expenses, but because I wanted to follow "the rules," I became fearful of spending any funds, regardless of the potential benefit to her. In accordance with DHHS stipulations, the terms of the Trust are clear: when Emily is no longer here, the entire contents of the Trust will go to the State.

This seemed in direct conflict with the intent of the Trust, and so I decided to appeal the Department's decision. I met with an estate attorney in Manchester, who explained that this had been a long-standing issue with Special Needs Trusts and that our family was not alone in facing this frustrating situation. Under Federal law, the expenditures in question would not be countable income, but there was an exception to this in NH. After our lawyers spent countless hours in research, we agreed to move forward with the appeal process.

At the time, I had no idea that our case would end up in the NH Supreme Court. It was intimidating to imagine going against the very state which provides Emily's services. At times, I feared some sort of retribution or that Emily's benefits and supports would be in jeopardy. The single most comforting factor came from being a graduate of the IOD's NH Leadership Series in 2003. The knowledge I gained helped me to maintain the courage to continue. Equally sustaining was the life-long bond created with the other parents who attended, and the respect I hold for them and their daily challenges.

There is no way to express my gratitude to the legal community for their assistance, who selflessly contributed their time and resources, attended the hearing at the Supreme Court, and testified at the Public Hearing on HB 273, sponsored by Rep. Ruth Bleyler (a NH Leadership Series graduate herself!). As parents, we all do our best each day, try to diminish our disappointments, and hold on to the fact that there will ALWAYS be reasons to celebrate!

For more information on the NH Leadership Series, visit www.nhleadership.org.