Such decisions are especially challenging for parents of children with special needs. The question of “Who will take care of this child after we’re gone?” can be heart-wrenching.
There are financial planners who specialize in this area, and the best option for many families might be to ask a generalist planner like me for a referral to one of them. The following suggestions, then, are intended as starting points or a very general framework on which to build.
A fundamental tool in providing for a special-needs child is a trust. My suggestion is to have this trust handled by a trust company that does not manage money, rather than a bank. It will charge a flat fee for its service, typically in the range of $3,500 to $10,000, and the trust need not be in the millions of dollars.
The parents can empower the trust company to hire an appropriate investment advisor to manage the money. I suggest the trust require using an advisor who is a fiduciary to the trust and is compensated by fees rather than commissions. This, along with the trustee looking over the advisor’s shoulder, provides a good system of checks and balances.
Then the parents can appoint an advocate for the beneficiary who serves as a co-trustee. This person does not manage the money, but is the trustee’s eyes and ears to make sure the trust is meeting the beneficiary’s specific needs. When the advocate can no longer serve, the corporate trustee can appoint a new advocate.
Advocates might be family members or representatives from an agency that provides care to the beneficiary. In Rapid City, for example, a nonprofit organization called Black Hills Works serves people with a variety of special needs. Many of its clients receive services throughout their lifetimes, and some of them are supported by trusts. An agency like this will not serve as a trustee for clients’ funds, which would be a conflict of interest, but it can serve as an advocate for a client who is the beneficiary of a trust.
The basic approach I’m suggesting is to separate the responsibilities of caring for a special-needs child among several professionals, family members, or friends, according to their competencies and the child’s needs. A corporate trustee, not an individual, coordinates their functions. This goes a long way toward assuring consistent and coordinated support throughout the beneficiary’s lifetime.
I also suggest not thinking of this approach only in terms of estate planning, but also to provide for a child as the parents age. As they become unable to provide care or manage funds themselves, they can turn responsibilities over to the corporate trustee, advisor, and advocate.
Making sure a handicapped child is taken care of may take all the parents’ assets, which could raise the question of fairness to other children. While the issue of what is fair depends on each family’s situation, my observation is that it isn’t necessarily a problem. Many siblings, rather than feeling deprived, are pleased to know the special-needs child is provided for. As with other estate planning concerns, clear communication about the parents’ intentions is crucial.
My final suggestion regarding a trust is to make sure you design it to allow the beneficiary as much flexibility and participation in decisions as is appropriate for his or her abilities. Ideally, the trust will not limit the beneficiary’s independence, but will support it.
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