Sassy, friendly, confident. These are just several words people use to describe my daughter Sarah. She has many positive characteristics, even if as a junior in high school she’d rather be left alone with her friends. Every so often she expresses that she would like to drive, even though I know deep inside she loves having a chauffeur.
There is one small problem. Her feet do not reach the pedals. She is just way too short. As a father of three I have learned that raising Sarah, who has Down syndrome, is both similar and dissimilar to raising my other children. My son, excited to get his license, took his permit test the first day possible. My youngest looks forward to that day as well. Sarah might learn to drive, and if she does, the entire process will look different. It will take longer... and I will be more frightened to get in the “shotgun” seat as she pulls out of the driveway.
Thinking about and planning her future is a mixed bag, too. I want Sarah to live independently. I expect her to finish high school and participate in a higher education program before working, like her siblings. However, she will need additional support from benefit programs, aides, specialized programs and from me.
On some levels, special needs planning looks similar to typical financial planning. Typical families save for retirement, have term life insurance, get out of debt, and fund other desired life goals. So do our families. Unlike typical families we need to plan for benefit programs to provide income, health insurance, and supported living. We face higher hurdles to achieve success in schools, and for lifelong health outcomes, employment, and independence.
The following are key areas to consider in your plan:
Special needs trust. Typical planning includes having a will and other documents for when you die or become incapacitated. Families like ours want to include a special needs trust. Your family member with a disability can lose access to benefit programs by having her own funds. The trust is a way to continue to pay for a high quality of life without losing valuable health, income, and community benefits.
Two-generations. Adults planning for themselves hope to leave some money to family and charities, but it is often secondary to maintaining their current standard of living. Families like ours intend to create assets to care for a son or daughter with a disability. It requires saving additional funds to be passed along.
Circles of support. Try as we might we cannot live forever. My goal is to outlive my daughter, but it is unlikely I will. We cannot leave the well-being of our family members to chance and we should be intentional about the people and nonprofits supporting us. Find organizations in your community serving families like ours and stay in touch with the ones you prefer so they can step in to help when you are ready.
Designated people. Your estate plan has people named to act in important roles – as trustee, guardian, attorney-in-fact. Review your documents every five to 10 years and always after a major life event occurs for one of them. Someone going through a divorce or moving to South America might not be the best choice for a trustee or guardian.
Trust funds. I expect my daughter to outlive me by five to 10 years. While she’s alive, I pay for her to enjoy life. After I pass away, she will still need money to make her life fulfilling. Trusts can be funded with different assets – investment accounts, IRAs and retirement accounts, real estate, life insurance, and more. Your plan should include calculations about how much will go to the trust and which assets to use to fund it.
Special needs planning protects benefit programs that can be worth tens of thousands of dollars every year in income, health insurance, and community supports. Parents of people with special needs embrace their role; they know life is different than what was expected, and they also know it is full of new discoveries and great joys.
Find a good team to help you make future plans. Getting out of debt, saving enough to retire and pay for future special needs expenses, and having the trust in place will reduce stress and anxiety about what comes next. Knowing I have taken steps to fund future needs, lets me enjoy each day as it comes – even if one of those days is in the passenger seat next to a new driver.
ABOUT THE AUTHOR
Rob Wrubel is a CFP who has a daughter with Down syndrome. He is recognized as a leading expert on financial planning for families with special needs members. Wrubel has written two books about financial planning and special needs families—Financial Freedom for Special Needs Families: 9 Building Blocks to Reduce Stress, Preserve Benefits, Create a Fulfilling Future and Protect Your Family: Life Insurance Basics For Special Needs Planning—and he has been published recently by Law360.com and The Good Men Project. Wrubel holds the Certified Financial Planning (CFP®) designation, the Accredited Investment Fiduciary® (AIF®) designation from Fi360, and the Accredited Estate Planner (AEP®) designation from the National Estate Planning Council.
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