An Attorney’s Response to the Autism Epidemic
RFK Jr. may claim to know what causes autism. However, professionals—lawyers, educational advisors, health care specialists, advocates, and teachers—are more focused on improving the quality of life for those diagnosed as being “on the spectrum.” Here’s how I approach this challenge in my work.
Planning for families with a child identified as autistic presents significant complexities. The cornerstone of any such plan is establishing a trust for the child, specifically a special needs trust. However, this legal instrument is most effective when paired with informed decision-making.
Among the most important issues to consider are:
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Creating a thoughtful and flexible trust document.
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Determining who will bear future responsibility for care and management.
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Funding the trust sufficiently to meet the child’s lifetime needs, if possible.
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Planning for a transition to a suitable permanent residence.
Here are a few cautionary points worth considering:
The Trust Document
The trust document must be meticulously tailored to meet the individual’s unique needs. While boilerplate language exists, crafting this document is far more than a fill-in-the-blank exercise. Legal terminology can be daunting, and the review process exhaustive. Still, attention to detail is critical. Some trust terms require flexibility, and the trust itself should include provisions for amendments or restructuring as circumstances evolve.
The Role of Family
Family members are often assumed to be the natural choices for trustees and fiduciaries, but they may not always be the best option. Frequently, parents planning for their eventual absence expect the autistic child’s siblings to serve as trustees or guardians. Those siblings must possess not just financial savvy and good judgment, but also emotional resilience. In some families, the dynamic centers intensely on the autistic child, as a parent once described to me—it’s as if the family is caught in a cyclone. Other siblings may accommodate by stepping back emotionally, enabling parents to focus where needed most.
There’s also an assumption that family members won’t charge for their work, whereas professional or corporate trustees would deplete the trust with fees. In reality, corporate trustees rarely accept these roles for special needs trusts, given the demanding nature of the work and the typically modest sums involved. Unfortunately, banks and brokerage houses are not well-suited for these responsibilities.
Funding
Funding a special needs trust often requires broad community support. Grandparents can be encouraged to include the trust in their estate plans. Parents might consider purchasing permanent life insurance and designating the death benefit to the special needs trust. Qualified retirement accounts, such as IRAs, may provide a valuable, tax-advantaged way to secure an autistic child’s future.
Permanent Housing
All too often, parents delay selecting a permanent home for their adult child with autism. However, parents inevitably age, and the demands of caregiving may become overwhelming or impossible. An early transition to a new residence allows the family time to adjust and provides stability for the child. As the number of people diagnosed with autism rises, independent housing options beyond living with family may become increasingly scarce. Now is the time to plan ahead.
These thoughts reflect how I help families respond to the mounting challenges posed by autism. My focus is not on Tylenol or vaccines, but on building a safe and healthy future for the entire family.
