Wednesday, February 1, 2012

Got questions about financial planning for your child with special needs?

Some days, it's hard to look beyond the day you're immersed in. You're juggling your child's schedule, booking doctor and therapy appointments, tending to his needs, doing assorted therapeutic stuff and repeating "Max loves Cars 2!" 8,500 times (oh, wait, that's just me). Some days, even a bathroom break feels like a treat.

But you know, in your head and heart, that at some point you need to start planning for your child's adulthood, no matter how hard the thought of that is—or how pressed your budget is. It seems even more important now, given all the nasty budget cuts to services for adults with disabilities.

I'm going to be doing a series of posts in the upcoming months meant to demystify (and de-anxiety-tize!) the process, sponsored by Massachusetts Mutual Life Insurance Company (MassMutual). The company has a program devoted to special needs financial planning, SpecialCare, for parents and caregivers. I'll be visiting a financial planner to go through the planning process, and I'll share details about what it's like, along with other info I get.

Need some motivation for wrapping your head around planning? You could sign up for a free screening of Autism: Coming Of Age, which I reviewed back in April. It's a powerful documentary about the care our kids will get as adults, and while it focuses on autism the message and information is helpful to any person with disabilities. MassMutual, which sponsored the film, is offering private screenings to groups of 25 or more; read the details and fill out a request form here.

Meanwhile, please share your questions about planning financially for a child with special needs. My aim is to get them all answered in the posts. Ask away! No question is too big, too small, too neurotic or too out there.

This is one of a series of posts sponsored by MassMutual, for which I received compensation. SpecialCare is an exclusive MassMutual program that provides access to information, specialists and financial products and services.


  1. Thanks for this! I'd really like to know at what age you should start planning for a child with special needs? Mine is six years old, like Max he has cerebral palsy, and I'm thinking about this.

  2. Thanks for this great topic! I am interested in planning for future living arrangements. There is a good possibility that my daughter will not live independently, and for many reasons I do not want her to live at home with us, including needing to feel confident that she is all set before we die. How does that work financially? Are supportive living situations covered in any way, are parents responsible for the full cost, or is it somewhere in the middle? How do I set this up, and what plans do I need to make now?

  3. I opened a 529 for my son shortly after he was born. He was diagnosed with PDD-NOS this past October. I am not sure if he will still be going to college. Don't want to sound like I am giving up but just facing the possibility that college may or may not be in his future. Do you think it is wise to continue saving for college or find another financial vehicle to save for his future? Also I am interested in setting up a trust for him. Are there special financial provisions that I need to consider for my special needs child? Also is there a way to set up long term care for a child with special needs, meaning someone that can come to the home to care for him if needed? What savings vehicle would be best used for that?

  4. I'm not sure I fully understand what a trust IS. I just need a basic explanations of all those things you have to do for special needs planning.—Beth

  5. The first think I would suggest is to make sure your will has been prepared by a lawyer who is familiar with special needs trusts. I would not save any money in the child's name. It will count against him/her when trying to access waiver programs or other public assistance programs.

  6. A topic i have been thinking about lately, as we are thinking about our wills. Our county is having a seminar at the end of the month and that is one of the things that will be discussed. Would love to compare what is learned. I will have to see about forwarding the screening also to our local autism meeting group...sounds like something good for the monthly meetings.

  7. What kind of planning should be done - setting up a trust, a special brokerage account? I guess it should be something not too risky. How do you even figure out how much to put away?

  8. So glad you'll be offering this series of posts, Ellen! If anyone can "de-mystify" and "de-anxiety-ize" the process of future financial planning - it's you!

    Wanted to add a couple of resources to the mix - in case they are helpful to anyone.

    1. Here's a post on Special Needs Trusts -

    2. Since there have been some questions in the comments about future living arrangements and supports - here's a post with a link to a webinar on this topic

    Hope folks find these helpful!

  9. Our LO has CP among other things and is very young still. We don't know what the future holds. While we are hoping for the best, we also want to be prepared for the worst. And the only thing we feel we can do is save as much as possible.

    So we would like to know: 1) How much would one need to save - at minimum and at decent lifestyle level 2)If we put money in a college fund and we cannot use it later where does the money go? Can it be used for other stuff like medical care? 3) Basic tips for setting up special needs trusts and wills 4) How to maximize tax savings for instruments related to disability.

    Thanks for the good work and great blog!!

  10. I'm very excited for these posts. I need to do this and have just been putting it off.


Thanks for sharing!