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Parents of children with disabilities must plan ahead

All parents worry about what will happen to our children when they are gone. This is especially true of parents who have children with disabilities.

All parents worry about what will happen to our children when they are gone. This is especially true of parents who have children with disabilities. Because of medical advances, children with disabilities are outliving their parents with increasing frequency.

We’ve only lived in the Twin Cities for about four years. One of the first organizations we connected with when we moved here from Ohio was Arc Greater Twin Cities (Arc GTC). As the parent of a child with Down syndrome, I’m committed to the organization’s mission to help people with disabilities realize their goals, from the time they’re born until they pass away.

When Arc GTC asked my wife, Tara, and me to chair Arc’s upcoming fund-raising gala, how could we refuse? The gala will benefit Arc¹s Lifetime Assistance Program, which is just one example of Arc’s tireless advocacy on behalf of people with disabilities. Through this program, Tara and I will prepare for our son’s future when we’re not here.

The Lifetime Assistance Program combines long-term legal and financial planning with person-centered “quality of life planning.” These three aspects of planning ensure that family members with a disability have a framework for future supports and services, according to Anne Roehl, Lifetime Assistance Program specialist at Arc Greater Twin Cities. She says the goal of the program is to secure a high quality of life for people with disabilities after their parents are no longer able to provide that support.

“Through the planning process, we help individuals and their families identify and document what’s most important to them: What are their values, hopes, and dreams for the future?” she says.

More than a will or estate plan
To begin the process, families complete a planning guide that includes many aspects of an individual’s life, such as family relationships, likes, dislikes and religious preferences. Then, after several planning meetings, families develop a comprehensive lifelong support plan. The plan provides a roadmap for future services, based on the wishes and needs of a person with a disability and his or her family.

As part of its services, the Lifetime Assistance Program helps families plan from a financial and legal standpoint, providing information about special-needs trusts and guardianships, and connecting them with professionals who can help them achieve their plans.

The part of the Lifetime Assistance Program that particularly influenced our decision to use it was its quality-of-life specialist services. These services look out for the individual with the disability to ensure the hopes and dreams spelled out in the plan continue to be a part of his or her life after the parents are gone. (For details about the program, go here.)

Our biggest fear was that our son would be lonely when we are gone, and we wanted to be sure he would have people around him who cared about him. This aspect of the program absolutely addresses that.

Planning for such needs is critically important. In a 2005 MetLife survey, 68 percent of parents with children with disabilities had not prepared written plans, and 88 percent had not set up a trust to preserve Medicaid and Supplemental Social Security eligibility.

I’m in the financial-services business, and there’s a saying in my business that if you fail to plan, then you’re planning to fail. Thanks to the planning we’ve done together, Arc Greater Twin Cities has played a significant role in my family’s life, and it will continue to do so after Tara and I are gone.

Peter King is director of Merrill Lynch’s St. Paul & Associates division. He and his wife, Tara, are co-chairing the Feb. 27 Arcademy Gala, which is raising more than $200,000 to support services provided by Arc Greater Twin Cities. You can learn more here and here.