Parents of disabled get a tool to help with care

As an estate-planning lawyer, James Houle knew how complex and expensive it could be for parents to leave money for the care of a disabled child.

As the brother of a man with a mental disability, Houle knew how important it was for the child to have that kind of support.

This year, Houle used his unique set of experiences to set up the Maine Trust for People with Disabilities, a nonprofit corporation that offers an easy-to-use, inexpensive option for families that want to improve disabled relatives' quality of life.

Using a volunteer board of managers and pooled investments, parents can set up trust funds for their children to pay incidental expenses that are not covered by state or federal programs.

And unlike a direct gift, the money kept in trust will not affect a child's eligibility for the programs he or she relies on for life's necessities. Before the corporation's creation, trust funds were an option available to wealthy families but too expensive and complex for people of lesser means. It's a service Houle hopes eventually will be available to everyone, whether they have families to contribute or not.

"Parents will give what they can out of love, but they always want to know: Who's going to take care of 'John' when I die?" Houle said. "I figured with my kind of expertise and my sense of the responsibilities involved, if I didn't do something, it would be a long time in coming."

Care providers agree that the service is a welcome addition to what is currently available. State and federal programs leave major gaps in care, from movie tickets to dental care, that can have huge effects on quality of life.

It comes at a time when government programs are reducing what they will pay for, said James Pierce, executive director of Independence Association Inc. in Brunswick. There is a gap in what federal programs will pay for room and board that the state made up in the past, but Pierce said that is changing.

"There is a lot of constriction in what Medicaid will pay for and not pay for, and the state is now saying they will not cover those costs," he said. More is expected of families and nonprofit service providers.

Like most of the 8,000 people with developmental disabilities in Maine, Houle's brother John depends on a combination of state and federal programs to pay for his housing and medical care.

But if he needs a haircut, cab fare or some new winter boots, he must rely on his family. Even essentials such as dental care and pharmacy co-payments are not covered.

"People with disabilities are living on a subsistence level," James Houle said. "There is no government program that will purchase a pair of headphones for my brother so he can indulge in recreation without bothering his roommate."

In order to remain eligible for the government programs, a disabled person cannot have more than $2,000 in assets in his own name. If a parent were to leave more than that to the child, government benefits would be stopped until that money was exhausted.

In the past, parents had two choices when planning for their child's future. They could leave money to another relative with the understanding it would be used to care for the disabled child, or set up a special-needs trust.

With the first option, they risked that the money could be lost in a divorce, lawsuit or bankruptcy. With the second, they faced high costs to set up the fund and manage it over the years.

The Maine Trust will be kept by Norway Savings Bank and overseen by a volunteer board. Families will be asked to pay a one-time $500 fee to set up the fund. They also will pay the equivalent of 2 percent of their investment annually for management costs once the account is active and paying benefits.

Initially, the minimum account will be $25,000, which would allow the trust to break even. Houle hopes that over time, both the minimum account and the management fee can be reduced.

The trust also has a foundation component. Families will be asked to consider leaving all or part of the residue of a trust account to the foundation when the disabled person dies. That money would be used to set up accounts for people who don't have any support for incidental expenses.

Houle took time away from his work with the Portland law firm Bernstein Shur to create the trust and will serve as a member of its board, which is made up of professionals from business, social services, finance and government. He said he hired an outside attorney to help set up the trust because he didn't want other lawyers to think it had a "monogamous relationship" with his firm.

Houle's family has been involved in issues involving people with disabilities since John Houle, the second-youngest of nine children, was born.

His parents found that there were no community-based services for people like their son and started a nonprofit organization, now known as Creative Work Systems, which has clients from central Maine to York County. It offers sheltered workplaces and training for people with disabilities. Lois Houle died in 2001 and her husband, Paul Houle, died a year later.

James Houle said his brother spent several years in Pineland, the state institution for people with mental disabilities, and was released into community care when it closed in the late 1990s. He now lives in a house in Biddeford with 24-hour care and works, when he can, in one of the programs created by his parents.

James Houle's experience, both personal and professional, make him the ideal person to set up the trust, Pierce said.

"This wouldn't have happened without Jim," Pierce said. "He saw something that needed to be done and he did it. I have great admiration for Jim."

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