Planning for the future: Special needs trusts

I’ve written before about the need for parents to think about the future for their autistic children. (See, for example, Support and Services for Autistic Adults, Planning for the future: Reality check for parents…, and It’s never too early to start planning for adulthood.)

The more I learn the more I realize I don’t know nearly enough, so I take every chance I can to learn more. A program being offered by the St. Louis County Special School District is helping me along that path.

Entitled Dealing with My Greatest Fears, this three-part workshop is designed to provide information to students and their families about the transition process and issues that cause anxiety for parents when planning for the post-school years. Families will get the necessary information to put in place a comprehensive transition plan. Last night I attended the first session:

Session 1 – Feb. 9 — SSI, Estate Planning and Guardianship

This session answers, “What will happen to my son or daughter if I am not here?” and addresses issues of guardianship, estate planning, SSI/government assistance and long-term planning.

For this post, I’m going to focus on the estate planning topic, I’ll try to provide some thoughts on the guardianship and SSI/gov’t assistance topics later.

The estate planning topic was presented by Gerald Zafft, a principal at Blumenfeld, Kaplan & Sandweiss, P.C here in St. Louis. He first learned about the need for special needs trusts, as he put it, “the hard way” (Gerry has a now 35 year old son with Down Syndrome and has been involved with the Midwest Special Needs Trust (formerly known as the Missouri Family Trust) since its creation nearly 15 years ago.

Some key thoughts from his briefing materials and presentation (emphasis his):

The first consideration for planning is to determine the needs of the beneficiary (in our case, our children). Planning should take into account the needs of the beneficiary now and in the future, especially what the needs will be for supplemental income after hte parents’ death. Resources of such plannign are available from the Arc of the United States.

The second major consideration is to identify the source of funds for the trust and how and when these assets will be transferred into the trust. Many types of assets can be used to fund the trust, including cash, property, stocks and bonds, certificates of deposit, and life insurance policies.

A special needs trust enables assets to be held for an individual with a disability without negatively affecting eligibility for government benefits. First created in the early 1970’s, Social Security Administration regulations now govern them. Trusts which meet the SSA regulations are not counted as a resource for determiniation of eligibility for SSI or Medicaid.

A lot of things to consider, many more than I can cover here. The Midwest Special Needs Trust site has a wealth of information, as well as links to many other resources. Many, many things to consider and plan for.

If you live in the midwest, I also encourage you to check out the services the MSNT provides.

Bottom line, as I’ve said before, it is never too early to start thinking about this.
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If you are interested, the next two sessions in the Dealing with My Greatest Fears workshop are:

Session 2 – Feb. 16 — What Happens After Graduation

Session answers, “What will my son/daughter do once they have graduated?” and addresses the vocational, post-school enrichment programs and recreational/leisure options available to students after school.

Session 3 – Feb. 23 — Getting the System to Work for Me

This session answers, “How do I get the system to work for me? And addresses the many issues involved in working with the system to access quality, post-school programming.

If you live in the St. Louis area and are interested in attending, you can call 314-989-7807. There is also on-line registration for SSD programs*, but this one is no longer listed. (A lot of other good stuff coming up, though.)

* Be warned, this registration site only supports Internet Explorer.

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