Ten Steps in Planning for My Special Needs Child

by: Begley Law Group

by Thomas D. Begley, Jr., Esquire, CELA

  1. Retain a Competent Special Needs Trust Attorney.

The first step in planning for a special needs child is to retain a Special Needs Trust Attorney who is experienced in assisting families with special needs children.  Many Estate and Trust Attorneys draft Special Needs Trusts, but do not have sufficient volume or sufficient experience to do a deep dive into the needs of the family of the child with special needs.

  1. Develop a Plan

As long as parents are living, they will be sure that their child with special needs is taken care of.  The problem is after the parents are gone.  Who will take care of the child or children?  Where will they live?  How will their needs be paid for?  Do they work or could they work?

  1. Identify a Funding Source to Pay for the Standard of Living That You Want the Child to Attain.

Often, this means leaving your special needs child a larger share of your estate than your healthy children.  In some instances, it may mean leaving all of your estate for your special needs child.  Frequently, life insurance, especially second-to-die life insurance, is a good solution.  A financial advisor with experience in dealing with families with special needs children can be invaluable.

  1. Siblings

If your special needs child has siblings, what role, if any, will they play in the life of your special needs child?  What can they do to help?  Realistically, will your special needs child be able to live with a sibling?  If not, can the sibling work with a professional trustee to ensure that the special needs child achieves the standard of living that you desire.

  1. Housing

What will your special needs child do for housing?  Is it realistic to think they can live with a sibling?  If not, can they live in a group home?  If a group home makes sense, at what point should that be considered?   There is a very long waiting list for group homes in New Jersey and most other states.  When should an application be made for a group home?  Often, this should be done before the parents become too old to care for the child at home.

  1. What Happens When My Child Turns 18?

When a special needs child turns 18, frequently he or she is eligible for SSI.  If the child is incapacitated, guardianship should be considered.  If the child has marginal capacity, perhaps a Supported Decision-Making Agreement will suffice, and a guardianship can be avoided.

  1. Public Benefits.

What public benefits are available to special need children?  Frequently, these benefits include SSI, SSDI, Medicaid, Medicare, Group Homes, Federally Assisted Housing, Food Stamps (SNAP), Low Income Home Energy Assistance Program (LIHEAP), Division of Developmental Disability (DDD) services and many others.

  1. Community Resource.

Community resources, including disability organizations and government agencies, are available to assist the family of a child with disabilities.

  1. Estate Planning.

Parents of children with disabilities should implement an estate plan as early as possible.  The estate plan would include a Will, a Living Trust (if appropriate), a Living Will, a Power of Attorney, and a Special Needs Trust.  Estate planning for a child with disabilities who has capacity should also be considered.  A simple Will, a Living Will, and a Power of Attorney are all useful.  The Living Will and Power of Attorney can often be utilized to avoid guardianship.

  1. Family Discussion.

Once steps 1 through 9 have been completed, bring your circle of people who will provide assistance together to discuss the role that each is expected to play.