Jonathan is 20 years old, has autism, and is currently receiving government benefits. He is still living at home with his parents, receiving SSI equal to $628 per month, as well as a monthly stipend of $30.
His parents want to make sure he is provided for should something happen to them and are considering a Special Needs Trust. They are not sure how much to include to ensure their son can maintain his quality of life, while still remaining eligible for needs-based programs that will cover basic health and living expenses.
What are some considerations in planning for how much to provide for his needs above and beyond what the state is providing? The following questions can help them make their decision:
- Will he live at home, with another family member or caregiver, or in a community facility where his SSI would go to the facility for living expenses?
- Are there medical expenses that are not typically covered by his benefits that are necessary? (e.g. allergy medication or assistive devices that are not covered by insurance)
- What social activities are important to your child that you would want to ensure continues? ( e.g. going to movies or baseball games with siblings)
- Are there things such as a computer, tablet, DVDs, video games, etc. that improve his quality of life?
The easiest way is to keep track of everything you spend on your special needs child above and beyond his benefits is to keep a record over the course of the month to see how much is spent. After you have that amount, go back and add in periodic expenses that might come up quarterly or annually.
Once you decide on the amount, how can you ensure that your wishes on how the funds in the Special Needs Trust should be used are made known? You can include an optional letter of intent attached to the trust that allows you to express your wishes, along with special notes about the beneficiary’s preferences.
More than $13 billion a year is spent to care for individuals with Autism Spectrum Disorder and other special needs. For the average affected family, this translates to $30K per year. Fortunately, there are many ways to plan for the long-term care of a disabled child. If you have a special needs child who will likely need care for life, it’s important to provide legal protections for your child. The Fairfax Special Needs Law Firm of Evan H. Farr, P.C. can guide you through this process. Be sure to check out our dedicated Special Needs Website at . If you have a loved one with special needs, call 703-691-1888 to make an appointment for a consultation.
About Evan H Farr, CELA, CAP
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