Beyond a Will and Trust, Leave Your Child a Special Needs Care Plan

When they plan for the future of a child with special needs, parents often turn to professionals such as an attorney and a financial planner to establish guardianship and to develop and maintain a special needs trust.

But to supplement legal documents such as their will and special needs trust, parents can and often should develop a Care Plan.

A Care Plan is a way to inform future care providers about the parents’ concerns, wishes and desires for their child at any age. It describes a child’s needs and abilities and can be written regardless of the child’s age.

By assembling this information, parents can give future care providers the knowledge and insight that they may need to provide the best care possible. It can also alleviate some concerns that parents may experience when contemplating if they are longer living, what will become of their child.

What’s In a Care Plan?

The Care Plan contains any useful information that a parent wishes to share. Some parents may find it helpful to provide a brief family history. Others may share educational history and any desires for future education.

‘The Care Plan should specify with whom the child should live if the parents are unable to provide care. As best as they can, parents should describe what the living arrangements entail, such as “shares a room with older brother” or “sleeps best with bed under a window.”

Another section can detail what types of future work a child might enjoy as well as the level of support that might be needed.

It is also important to include information about current medical professionals that the child sees, how often they are seen, and for what reason. If the child exhibits challenging behavior, the Care Plan can also include a description of those behaviors and plans in place to address them.

Social activities should also be included as part of the Care Plan. Details about types of activities as well as most and least preferred activities could make it easier for a future care provider to create a stimulating and relaxing environment for the child.

Parents can also specify particular religious activities or a place of worship that they wish to continue. Prearrangements or directions for a funeral or burial service involving the child can also be included in the Care Plan.

Maintaining the Plan

A Care Plan should be updated regularly and kept with important paperwork such as wills and other special needs trust documents. Each time that it is updated, it should be signed and dated again.

For more information about Care Plans, families can contact an attorney or a special needs trust advisor. For a list of providers in New Jersey who can assist with your Care Plan, please call 800-4AUTISM, visit or e-mail:

Amy Perrine is information director of Autism New Jersey.

Categories: Special Needs Parenting