How to Make Decisions for Adult Children With Special Needs

Parents of children with special needs must ensure that medical and financial decisions will continue to be made in the child’s best interest once they reach age 18 – the age of legal capacity. In most states, once a child reaches age 18, they are presumed to have decision-making capacity, and the parents’ legal authority ends.

Parents of adult children with special needs have assorted options for establishing a new legal authority to continue making important decisions. Each option comes with upsides and downsides, depending on the situation.

Guardianship and Conservatorship

If the child is incapable of making personal or financial decisions once they reach age 18, a parent can petition the court to become the adult child’s guardian or conservator. (Note that these terms are different in different states.) This appointee can also be an adult who has the capacity and doesn't have a significant conflict of interest.

The disadvantage is that guardianship and conservatorship require a court process. This can be time-consuming, costly, and emotionally trying for the person with special needs and their family. To protect against abuse, an attorney represents the individual with the disability (the ward), and the court determines whether the ward is incapable of making their own decisions.

In cases where the court appoints someone to make financial decisions on the ward’s behalf, it may require that the person be bonded, file annual financial statements, and request the court’s permission before dealing with the ward’s property. While this may help increase oversight and protection, it also decreases family control.

There are ways to avoid the time and expense of a guardianship process while accomplishing the same basic goals. If the person with the disability has sufficient capacity to understand, they can appoint an agent using a durable power of attorney. Depending on the type of power of attorney, the agent will have the authority to make financial and property decisions or medical and personal decisions on behalf of the adult child, all without court intervention or direct oversight.

Supported Decision-Making

For individuals with disabilities, there is an alternative to guardianship that is becoming more popular nationwide.

Traditional guardianship can prove unnecessary for many people who have the capacity to weigh information and make decisions for themselves. Gathering a team of supporters they trust, a person with a disability can instead opt to engage in supported decision-making. The supporters they choose, which may include family, physicians, therapists, attorneys, or others, help the individual understand their choices and communicate their decisions.

“The key ingredient is trust,” says Anna Krieger, executive director of the Massachusetts Advocates for Children. The other, she adds, is that the individual with the disability must “be able to express their will and preferences in some way that the other people can understand.”

Representative Payee

Your adult child may receive either Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) but cannot manage their income. In these cases, another person – a representative payee – can receive the funds to use on the child’s behalf. However, this option also requires the filing of an annual report showing how the money was used.

Special Needs Trust

Parents may also consider establishing a special needs trust. This type of trust allows the disabled adult child to shield assets for certain purposes while maintaining their ability to qualify for SSI and Medicaid benefits. The trustee invests and manages the trust assets, usually avoiding the need for a financial guardian or conservator.

A combination of these approaches may be the best fit for your family. Be sure to consult with an attorney familiar with special needs law. Consider the nature of the child’s disability, their assets, and whether they have the capacity to understand their choices. Find a special needs planning attorney near you.