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Consider Creating A “Care Committee” For Your Special Needs Child

Special Needs TrustWhen setting up a special needs trust, we ask parents to designate someone to serve as their child’s trustee. The trustee’s job is to ensure the child receives the best possible care – without necessarily being the primary care giver.

The trustee oversees things like the child’s finances, overall health, housing, benefits and education. However, finding someone who is extremely knowledgeable in all of these areas and knows all of the members of your family and how they interact with one another – can be a challenge. As a result, we often recommend creating a Care Committee.

However, before we get to care committees, let’s do a quick refresher on special needs trusts. Special needs trusts are legal instruments specifically designed to hold property for a person with disabilities.

Every special needs trust has a trustee – the person responsible for managing the trust’s assets for the benefit of the person with the disability. A special needs trust gives the trustee very broad authority to use the trust funds in whatever way she thinks will best help the trust beneficiary given the beneficiary’s current and future needs and other resources.

Because the trustee of a special needs trust has these discretionary powers and cannot typically be forced to make distributions to the beneficiary, the funds in the trust do not harm the beneficiary’s ability to qualify for government benefits like Medicaid or Supplemental Security Income (SSI).

This brings us back to Care Committees. Since the trustee of the special needs trust cannot always be expected to know everything about the beneficiary’s care and needs, parents may decide to name several knowledgeable people to serve as a formal advisory committee.

The Committee can include any number of people, but it is typically composed of a small group that parents select because they understand the beneficiary’s needs. Committees are often made up of caregivers, doctors, social workers, family members, lawyers and other advocates. The Committee members are supposed to advise the trustee about the best way to utilize the trust assets, even though the trustee usually retains the ultimate authority over the disposition of the trust.

However, in some cases the trust will mandate that the trustee must follow the committee’s advice unless it is clearly against the beneficiary’s best interests.

The Care Committee also facilitates a conversation between the trustee and the beneficiary. Since this relationship can sometimes be difficult, especially if the trust beneficiary is fully competent and resents the trustee’s control over the assets, the Care Committee can advocate for the beneficiary’s needs without antagonizing the trustee.

The Committee can also take some of the pressure off of the trustee, because she will have help making difficult decisions that a lone trustee may agonize over.

Not all parents feel the need to create a Care Committee for a special needs trust, but if you are interested in establishing one, we can help you design the right committee for your family. Contact DJ Jeyaram at or 678-325.3872.