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OARacle Newsletter

As those of us who are family members and caregivers of autistic people begin planning our financial futures, the prospect of a lifelong commitment is daunting. We know we need to do something, but might not know just how to get started. Our family was no exception. 

When we started our journey by taking these steps after our son, Kyle, was diagnosed with autism 20+ years ago, we soon realized we needed to start getting serious about long-range financial planning, something we hadn’t made a priority as young parents who were still in the early stages of home ownership and raising children. We decided early in the process that hiring a financial advisor was a good starting point. After talking with several firms, we started working with Eric Schumer, then at Merrill Lynch and now with RBC Wealth Management. We were impressed with his grasp of the issues facing families like ours, and his personal connection with his autistic nephew. He’s been with us every step of the way ever since. 

“I’ve worked with the Shipleys for 20 years, and what I know about Barbara, Don, and Erica is that caring for Kyle is and always will be priority number one. I have found that to be the case with all of my families who have someone with special needs or have a loved one who needs constant supervision,” said Schumer. “My top goal with families like the Shipleys and others I serve is to make sure their special needs loved one will always have the emotional and financial support they will need throughout their lives.” 

With help from Eric and others who help support Kyle and our family, we now have a strong foundation in place for our son after 20 years of steady work. Sure, our work is never completely finished, and we wonder what his life will be like after we’re gone. At least we know we’ve left no stone unturned as we’ve worked to plan for Kyle’s future. It all began when we started to take action rather than just thinking about it. In the familiar words of Chinese philosopher Lao Tzu, “The journey of a thousand miles begins with one step.” 

Action Steps and Guiding Principles

Kyle’s diagnosis was the catalyst for us to find out about the tools and professional guidance we would need to develop a lifelong plan for our family and our son. These are some of the action steps and guiding principles that emerged once we got started: 

  • Start with autism and disability groups for information. This is an easy first step to help you get some momentum. Autism and disability groups such as OAR, Autism Society of America, Autism Speaks, and The Arc are among those that offer a wealth of national and local information to help you get started. Visit their websites, get to know their staff, and take advantage of their webinars, conferences, and newsletters. Do the same with relevant state and local human services agencies. 
  • Tap into your networks. You are not alone on this journey. Teachers, therapists, clergy, and fellow families in the autism and disability communities are among those who can share experiences, best practices, contacts, and moral support. Don’t be shy about asking them for advice and connections. 
  • Get smart on benefits, programs, and tools. Listed below are some of the key elements to a long-term financial plan that require extensive research and application efforts to enroll and take full advantage of them. 
    • Estate plan 
    • Guardianship 
    • Life insurance 
    • Medicaid 
    • Social Security 
    • Special needs trust 
    • Waivers 
  • Explore financial advisors and saving vehicles. Working with a financial advisor offers several advantages, but not everyone may be ready to take that step. It’s an approach well worth exploring, since the right financial advisor can provide an invaluable perspective and support to maximize your efforts. If you’re not ready to make that commitment, look for other ways to build your assets, such as 401(k) plans, 529 accounts for college savings, and pooled trust funds. 
  • Keep good tax records. Yes, it sounds obvious, but W-2s, tax returns, and other records are almost always required when applying for benefits. Make sure yours are accurate and easily accessible. Develop a relationship with an accountant if you haven’t already, if only so your records are all in one place. 
  • Build your own kitchen cabinet. As you begin to make progress, you will start developing relationships with groups and people from your networks who are especially useful sources for information and support. Think of them as your micro-board of trusted advisors who provide a lifelong circle of support and may someday be candidates to become back-up guardians. If possible, identify siblings and other family members who are candidates to serve in this role. We call ours Team Kyle. 
  • Remember it’s a long-term effort. It’s a lot of work and there’s always more to be done, but there are plenty of rewards along the way. With the right team and information, you can do it once you take that first step!  

“This is not exciting stuff, but you need to make the time available,” said Schumer. “Most folks would prefer to spend their free time doing more exciting things than preparing a plan that is a major time and financial commitment, but you have to do it, and you’ll be glad you did.” 

Like most autism families, we’ve faced a number of challenges since Kyle came into our lives in 1996, but we’ve also enjoyed some unexpected rewards. As his parents, we’ve learned patience and tolerance not only for Kyle, but for everyone like him who sees the world differently. We’ve watched with pride as his sister has embraced her brother’s autism and been part of Team Kyle since day one. Kyle’s autism has brought us many blessings, not the least of which is a financial roadmap for the future. 

Don Shipley lives in Falls Church, Va. with his wife, Barbara, daughter, Erica, and son, Kyle. He is active in the local autism and disability community, and works as an independent producer and public relations consultant.