CFO Logo

Friday, July 15, 2011

Financial Planning for a Special Needs Child

One of my closest friends has a young son who has been diagnosed as high-functioning autistic. He's the sweetest, happiest kid, and I've agonized with her as she's struggled to get him the services he needs, especially from our school district.

So when MassMutual told me that over the next 10 to 15 years, an estimated 800,000 children with autism will age out of their school systems, it hit pretty close to home. MassMutual has sponsored a PBS documentary called Autism: Coming of Age, which is produced by award-winning filmmaker Catherine Sager and provides an inside look at the lives of three adults with autism and their families, and also includes expert commentary from advocates and state government officials who detail the long-term challenges of providing quality care to adults with autism.

When I was asked if I wanted to interview Joanne Gruszkos, the director of MassMutual's SpecialCare program, I had just one question: What are the top five things a family should do to plan for their special needs child? Here's her response:
1. Establish or review your child's Individual Education Plan (IEP). The IEP states where a student is currently and where the student is going, academically, emotionally, behaviorally, socially and cognitively. To help your child reach full potential, the IEP should do more. Work with his or her teacher to set specific goals for your student. Make sure the goals are limited in focus and "SMART"(specific, measurable, action-oriented, realistic and timely). {Ed. note: In theory this sounds great, but it depends so much on the people you are forced to deal with. My friend has tried hard, mostly unsuccessfully, to achieve this kind of relationship with her son's teacher and the school administration.}

2. Write a letter of intent. A letter of intent familiarizes other people with the person with special needs and expresses your expectations. You can request a free Word document Letter of Intent template at

3. Establish a Supplemental Special Needs Trust (SSNT). As little as $2,000 in assets can disqualify an individual from many governmental programs. Assets in an SSNT, if properly drafted, do not count against this $2,000 limit, making it an effective vehicle for enhancing the lifestyle of the person with special needs.

4. Coordinate your will and beneficiary arrangement. It's important for both parents to have wills and for the wills to coordinate with other planning documents, such as the child's trust. You should seek out an attorney who is familiar with SSNTs and your state's intestacy laws. It's important for parents of special needs children to have wills that are coordinated with other planning documents, such as a child's trust.

5. Choose guardians, caregivers and trustees carefully. It's very important to select the right people for these jobs and advise them of your selection. A great caregiver (guardian) might be a terrible money manager (trustee) and vice versa. The co-trustee or "committee" approach is often utilized when the responsibility of care and/or oversight is too much for one person alone.
Visit for free educational materials, resource guides and website links for additional information.



  • At 7/15/11, 8:14 PM, Blogger karenmed409 said…

    Thank you for the resource's! as a grandparent and guardian of our grandson who has been diagnosed with asperger's, the hubby and I are taking notes to see what we need to do to make sure he has a future. We just learned about the $2,000 in assets can disqualify an individual and just hired an attorney to help us with the appeal for benefits. We have been very lucky to have good folks to deal with for his school IEP. Last year they gave him a laptop to take to classes and turn in at the end of the day. We are looking to see what options will change after he turns 18. He has come a long way, he is listed has a special needs scout and earned his Eagle Rank last year.

  • At 7/16/11, 7:33 AM, Blogger Chief Family Officer said…

    @Karen - It sounds like your grandson is really lucky to have you! Kudos for doing such a great job!


Post a Comment

Links to this post:

Create a Link

<< Home