Autism Defined
April 2 is World Autism Awareness Day. It is estimated that approximately 75 million people worldwide have a diagnosis of autism spectrum disorder (“ASD”). Autism is defined as a bio-neurological developmental disability that occurs before the age of 3 according to the National Autism Association (“NAA”). Autism is diagnosed four times more frequently in boys than in girls. The rate of autism has steadily grown in the last twenty years per NAA.
So why is an elder law and estate planning attorney interested in autism? Many people are unaware that most elder law attorneys also specialize in special needs planning. However, not all estate planning attorneys are educated in special needs planning. This could be detrimental to your estate plan should you have an heir who is special needs (such as a child, grandchild, godchild, etc.).
Third Pary Special Needs Trust
For years, many people assumed that if you have an heir who is special needs, they cannot inherit from your estate. This is untrue! If you set up your estate plan correctly using a third-party special needs trust, you can leave money or assets to your special needs’ heir. You can appoint a trustee or trustees and designate a residuary beneficiary for any money or assets remaining in the trust upon the initial beneficiary’s death. This type of trust can be part of a will, revocable living trust or a stand-alone irrevocable trust. If you do not have a trustee, you can also look into setting up a trust using a pooled trust through Commonwealth Community Trust or the Arc of Northern Virginia.
By utilizing a third-party special needs trust, your heir will still have access to any needs-based entitlements such as Supplemental Social Security Income and Medicaid. All special needs trusts are considered irrevocable and the beneficiary cannot direct how the funds are spent or who controls the money. The trustee does have some limitations on how the money can be used but those limitations are addressed in the trust document itself.
First Party Special Needs Trust
There is another type of special needs trust referred to as a first-party special needs trust which differs from the third-party special needs trust. A first-party special needs trust is established by the disabled person, a parent of that person, a legal guardian for that person or a court. This type of trust can hold money that belongs to the special needs’ individual. An example is accumulated Social Security funds or funds awarded by a court for medical malpractice. The biggest difference with this trust (other than who owns the funds) is that the Commonwealth of Virginia may have a claim through Medicaid for some or all of the remaining funds in the special needs trust; however, you can also name a residuary beneficiary for any funds that the Commonwealth does not claim.
ABLE Accounts
Another option is establishing an ABLE account (Achieving a Better Life Experience). There are some changes coming to the ABLE program in 2026 so I will address that in a separate blog post later this year.
Guardianship
Our office also specializes in coming-of-age guardianships for those who have autism. When your child turns 18 years old, they are considered a legal adult in the United States. You may find that as parents you no longer have access to information such as health or school records that you did when your child was a minor. Guardianship will ensure that you can continue to assist your adult child in any way they may need in the future. In Virginia, a petition for guardianship can be filed when your child is 171/2 so you can get the guardianship in place prior to your child reaching the age of majority.
Please contact us if we can assist you with planning for your loved one’s future: https://themcmasterlawfirm.com/special-needs-planning/ . For more information, check out the links below.
https://www.fidelity.com/viewpoints/wealth-management/estate-planning-for-special-needs
https://www.truelinkfinancial.com/blog/making-a-will-can-protect-your-child-living-with-special-needs