Many couples are parents to children with special needs, both young and old, such as those living within autism spectrum disorders (“ASDs”), Down’s Syndrome, or many other conditions. For those of us who are parents to special needs children, it is critical not only to protect them now, but also to protect their future if they outlive us, and to ensure that they have full access to the government benefits to which they are entitled.
Below we’ll look at some of the unique planning requirements of families with children, grandchildren or other family members with special needs. There are many misconceptions in this area of law that can result in costly mistakes. So here are 7 legal planning tips for families who have loved ones with special needs.
Many people with disabilities receive Supplemental Security Income (“SSI”), Medicaid or other government benefits to provide food, shelter and/or medical care. Loved ones of special needs beneficiaries are sometimes told to “disinherit” them in order to protect their public benefits. Yet, these benefits rarely provide more than basic needs and this solution (which normally involves leaving the inheritance to another sibling) does not allow loved ones to help their special needs beneficiaries after they themselves become incapacitated or die. Instead of “disinheriting” a loved one, the best solution is often for loved ones to create a special needs trust to hold the inheritance of a special needs beneficiary.
None of us know when we may die or become incapacitated. It is important for loved ones with a special needs beneficiary to plan early, just as they should for other dependents such as minor children. However, unlike most other beneficiaries, special needs beneficiaries may never be able to compensate for a failure to plan. Minor beneficiaries without special needs can obtain more resources as they reach adulthood and can work to meet essential needs, but special needs beneficiaries may never have that ability.
Planning that is not designed with the beneficiary’s special needs in mind will probably render the beneficiary ineligible for essential government benefits. A properly designed “special needs trust” promotes the comfort and happiness of the special needs beneficiary without sacrificing eligibility.
Special needs can include medical and dental expenses, annual independent check-ups, necessary or desirable equipment (for example, a specially equipped van), training and education, insurance, transportation and essential dietary needs. If the trust is sufficiently funded, the disabled person can also receive spending money, electronic equipment & appliances, computers, vacations, movies, payments for a companion, and other self-esteem and quality-of-life enhancing expenses: the sorts of things families now provide to their child or other special needs beneficiary.
Some special needs trusts are unnecessarily inflexible and generic. Although an attorney with some knowledge of the area can protect almost any trust from invalidating the beneficiary’s public benefits, many trusts are not customized to the particular beneficiary’s needs. Thus the beneficiary fails to receive the benefits that the parents or others provided when they were alive.
Another frequent mistake occurs when the special needs trust includes a “pay-back” provision rather than allowing the remainder of the trust to go to others upon the death of the special needs beneficiary. While these pay-back provisions are necessary in certain types of special needs trusts, an attorney who knows the difference can save family members and loved ones hundreds of thousand of dollars or more.
Loved ones or family members can manage the special needs trust while alive and well if they are willing to serve and have proper training and guidance. Once the family member or loved one is no longer able to serve as trustee, they can choose who will serve according to the instructions provided in the trust.
Families or loved ones who create a special needs trust may choose a team of advisors and/or a professional trustee to serve. Whomever they choose, it is crucial that the trustee be financially savvy, well-organized and of course, ethical. The trustee of a special needs trust should understand the trustmaker’s objectives and be qualified to invest the assets in a manner most likely to meet those objectives.
A key benefit of creating a special needs trust now is that extended family and friends can make gifts to the trust or remember the trust in their own estate plans. For example, these family members and friends can name the special needs trust as the beneficiary of their own assets in their revocable trust or Will, and they can also name the special needs trust as a beneficiary of life insurance or retirement benefits. Unfortunately, many extended family members may not be aware that a trust exists, or that they could contribute money to the special needs trust now or as an inheritance later.
Many family members rely on their other children to provide, from their own inheritances, for a child with special needs. This can be a temporary solution for a brief time, such as during a brief incapacity if their other children are financially secure and have money to spare. However, it is not a solution that will protect a child with special needs after the death of the parents or when siblings have their own expenses and financial priorities.
What if an inheriting sibling divorces or loses a lawsuit? His or her spouse (or a judgment creditor) may be entitled to half of it and will likely not care for the child with special needs. What if the sibling dies or becomes incapacitated while the child with special needs is still living? That sibling’s heirs may not care for the person with special needs as thoughtfully or as completely as the sibling did.
Siblings of a child with special needs often feel a great responsibility for that child and have felt so all of their lives. When parents provide clear instructions and a helpful structure, they lessen the burden on all their children and support a loving and involved relationship among them. Parents of a child with special needs should go into legal planning with the mindset that their child will require a lifetime of care. Fortunately, by addressing these 7 key steps early parents can make tremendous progress toward ensuring their child is physically and financially cared for in their absence.
Your specific situation, and that of your special needs child will be unique. When I learn about your circumstances and needs, I can discuss with you your options and the resulting benefits.
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