Life-Care Planning

Trisomy 18 and Trisomy 13:  Common Questions about Life-care planning,
Wills, Estates and Special Needs

 When a family has a special needs child, having trisomy 13, trisomy 18 or other chromosome disorders, financial preparation for life-care, estate preservation and the care of the child become pressing matters that should not be ignored.   Without proper planning, costly mistakes can occur, such as accepting a gift from a generous relative, which could disqualify the child from important governmental programs.   It is important to conduct financial matters in the proper way.

Perhaps the best way to begin is to catalog all important information about the child  so that it is all in one place and accessible to future caregivers in an emergency.   This means they must know about it.  A good way to compile this information is known as a Letter of Intent.

Although not legally binding, a letter of intent offers guidance to the courts and trustees regarding interpreting care instructions and it typically includes emergency contacts, medical history, preferred living arrangements, behavioral challenges and a summary of family and child financial information.  This document is helpful to Special Care Planners or other financial professionals who specialize in working with special needs, attorneys, CPAs and others who can use it as a guide in creating plans, wills, trusts and other documents.   Samples of a Letter of Intent are available on the internet.

Special Care Planners are usually available through your family insurance company, and are typically made up of an attorney, a CPA and others such as social workers, caregivers and other financial professionals – all of whom have special training in this field.

What is a trust?  A trust is an arrangement between three people:  the trustmaker (sometimes called the grantor), the trustee and the beneficiary.   A trust is created when a trustmaker turns property over to a trustee, who holds it for a beneficiary.  One person alone can play one, two or all three of these roles.  An example of holding three roles is when a parent (the trustmakers and the trustees) opens a bank account for a minor child (the beneficiary).  A trust you establish can be either revocable (you can change your mind and withdraw it) or irrevocable (you cannot back out).  If you are the trustee, you should name a successor trustee in case you become incapacitated or die.

The Supplemental and Special Needs Trusts.   The laws are different in each State but, in general, these are two different types of trusts and each has its purpose.   These can benefit your special needs child by safeguarding and supplementing the child’s resources without damaging the child’s eligibility for governmental assistance.   The criteria for assistance are very stringent and the child can easily be made ineligible so it is important to consult a Special Care Planner or an attorney who specializes in this field when considering establishing such trusts.

For example, as of 2012, the child must have assets less than $2,000 to qualify for Social Security SSI and below $3,000 for Medical Assistance.   So it is important to properly allocate and account for any gifts or income designed to benefit the child.   These limits apply to the child’s assets, not the parents.

Wills.  It is very important to have a will.   A will is a document by which a person can name the person (his personal representative) to have control of his or her property when, and only when, he or she dies.   The personal representative must receive permission from a judge to proceed – this is called the probate process.

In many states, intestacy laws (dying with no will) require that the child will inherit a portion of the parent’s estate and if this exceeds the limits mentioned abot the child will lose eligibility for SSI or Medical Assistance.   Wills are a necessity and these should coordinate with other planning documents such as the child’s trust.   Generally, a trust can receive the child’s portion of the estate, thus preserving the child’s eligibility for assistance since the child does not own the trust.   A trust can own financial, property and other assets if properly structured.

Arrangements must be made for the child’s care should the parents die.  In addition, should the parents die and the child become an adult, how will he then be cared for?   An attorney should be engaged to establish the proper documents to protect and care for the child.

Benefits.  A disabled child might be eligible for benefits from Medicaid, Medicare, the State Children’s Health Insurance Program (SCHIP) or the Children with Special Health Care Needs (CSHCN) provision of the Social Security Act.   Information about these is available from and your Special Care Planner or attorney should be able to help.

As a simple conclusion,  your surviving child needs to be protected, both in terms of care and in terms of his or her financial well-being, so contact professionals who specialize in this field.