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Financial Planning for Autism Grandparents

As a grandparent of an exceptional child, you have probably already experienced many emotions – ranging from denial to acceptance, fear to joy, disappointment to fulfillment, balancing a feeling of powerlessness versus a strong desire to help, and many more. First off, know that all of these feelings are completely normal! And completely okay.

Grandparents are usually not in a position of primary decision maker for their grandchildren. Many grandparents find this to be a relief but with an exceptional child this can increase your feelings of powerlessness and anxiety. You have little control over the situation and any outcomes.

One big way to help is through financial resources, and often grandparents have more financial resources than their children do to help. The question is, what is the best way to help? And how do you know how to navigate the complex system of exceptional planning without interfering with all of the hard work that your kids might have done?

Parents and children often have complex relationships, and transparency (especially financial transparency) is usually not there. But in the world of financial planning for grandparents, the most important thing is to start the conversation with your child. Come to the conversation without judgment or preconceived notions. Know that whether they have completed their own financial and estate plan, or have not started the process, they are facing their families’ challenges in the best way they know how.

Let your child and their spouse know that above all, you want to help. You might know some basic information – such as if they have the means to have a financial advisor, and if they have done any estate planning. Is your grandchild eligible for and receiving government benefits? Here are some basic questions that could help you start to develop a plan for how you can best help.

You may even share this article with them, to start the conversation. But first, and most importantly, start any conversation by telling them you want to help, asking them how you can help, and listen as they tell you what they need. Be a sounding board for them.

1. How can I help? What are you struggling with the most today? What is something you need but have been afraid to ask for?

  • Listen to what your son or daughter has to say here. They may not be thinking long-term because they are drowning in the day to day. Do they have proper child-care? Are they able to get any time to themselves? Have they been able to go on a date or spend any time with their spouse?

  • Wherever they are at, help them find a solution to their immediate need, first. Whether it is a short-term or a long-term concern, meet them where they are. The rest can come later.

  • Most people assume this is money, but I have found this is usually not the case. It could be as simple as a listening ear, a morning of childcare, a referral to a counselor, or the ability to take a vacation away.

  • Be sure to set clear boundaries for yourself, and then offer any help you are willing/able to give.

2. What type of care does your grandchild need on a daily/monthly/long-term basis?

  • What type of support do you currently have set-up (therapists, government benefits, microboards, circles of support)?

  • What type of care might he/she need in the future?

  • What type of schooling/education do they have planned for her?

3. Have your son/daughter started a financial planning process?

  • Have they discussed contingency plans/estate plans for guardianship?

  • Set-up a will/ special needs trust?

  • Looked into an ABLE account?

  • An ABLE account is a 529-a that is set-up for an individual with a disability. It works similar to a traditional 529 and can be used for college expenses but can also be used for any other expenses related to the disability.

The world of financial planning for exceptional children and their families is intricate, detailed, and emotional. Both you and your children might feel overwhelmed by the process. Leaning on a professional financial planner to help you through can relieve some of the stress and pressure.

[Note from John Bryan, Coordinator of the Autism Grandparents Club: The author of this article, Kristin Carleton, heads a financial planning service – Eli’s Village ( - in Richmond, Virginia where I live. I asked her to write this article. Richmond, like all metropolitan areas, has a lot of financial planning professionals, and many of them can advise their clients regarding special needs trusts and a variety of other vehicles to serve short- and long-term financial needs of “exceptional children” and their families. But Eli’s Village has an add-on that is not common among financial planning companies: a hands-on holistic approach that addresses ALL of the family’s challenges – not just the financial parts. Kristin’s expertise is in financial planning, unlike the expertise of her Co-Director, Dr. Kathy Matthews, whose education and 20-year professional expertise are focused on exceptional children. And Kathy and Kristin are both parents of exceptional children. If your grandchild’s family is a candidate for professional financial planning, hopefully their community has a company that has a first-hand understanding of the wide range of needs and challenges, and that is able to provide professional guidance well beyond the financial aspects.]



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