What will happen to my child with special needs when I pass away? The reality is, in all likelihood, a child with special needs will outlive their parents. This is why with efficient financial planning, understanding government benefits, utilizing the right legal instruments, and most importantly, centering the plan around your child’s needs—the rainbow of financial security can lead to a pot of gold stability. In the following Q&A, I interviewed Stuart Flaum of Stuart Flaum Consulting. He specializes in special needs financial and legal planning, government benefits, special needs trusts, self-determination, guardianship, housing, employment, self-direction, SSI, SSDI, Medicaid Waivers, and more. Flaum serves on NYS Developmental Disabilities Advisory Council, chair of the Self Direction Committee, and has served on various boards, including treasurer of Parent to Parent of NYS, and secretary of the National Autism Association Metro NY.
In my interview with Flaum, what was most endearing is his genuine passion to help parents navigate the road to providing sound financial security and quality of life for their children. Flaum is also a parent of a son with special needs.
KLA: What’s a common mistake parents make when starting the journey towards financial planning for their child?
SF: Instead of planning from the morbid standpoint—“What happens when I’m no longer here?”—parents should plan from where the hope is. My approach is I start with the individual and their specific needs. For example, we ask if the parent has applied for Office for People With Developmental Disabilities’ (OPWDD) self-direction program or other services. The service system has robust benefits, not just financial, but other supports and services. For decades, professionals have asked parents, including you and me, do you have a will, do you have a trust or insurance? Making parents worry about the future, instead of focusing on the now.
KLA: What about Supplemental Security Income (SSI) benefits?
SF: SSI is really important because it provides a floor for individuals who can’t engage in gainful employment after age 18, or for those younger, who live in a household in which the family’s economic situation meets the criteria. I want families to understand that income, whether it’s earned or from the federal government, social security, parents’ retirement—it’s still money. Another important consideration is for parents who take their social security retirement income after age 62. For example, my son will receive one half of my full retirement benefits with cost of living for the rest of his life, providing that he doesn’t have substantial earned income.
KLA: What is a Special Needs Trust (SNT)?
SF: A Special Needs Trust (also called a Supplemental Needs Trust) allows you to set aside funds for a disabled individual without jeopardizing their eligibility for crucial government programs like Medicaid and SSI. Ordinarily, if a parent sets up a trust fund for their disabled child with $100,000 in it (for example), this would make them ineligible for public health insurance such as Medicaid. To avoid this, lawyers created special trust funds, which are structured in such a way that they do not impair a person’s eligibility for public benefits. They supplement the disabled beneficiary’s benefits, rather than replace them; hence the name Supplemental Needs Trust.
KLA: What inspired you to become a special-need planner and open a firm?
SF: I started my company when my son was 13 years old. When I went to plan with a financial advisor and attorney, I was really disappointed because all they asked me was about my income, my 401K, my house, my wife. They didn’t ask any questions about my son. So, by not encouraging me to think about financial planning from his perspective, I would have not thought about how he is going to live in the community, and how I’m not going to be one of those parents when I’m 90, my 70-year-old son is still living in my home. It’s about the excitement we want to create for our children’s future, making decisions in a more positive light with shorter windows.
For more info about financial planning for your special needs loved one, visit: https://stuartflaum.com/
Save the date! On Wednesday, August 19, join RBAF on the boardwalk at our 7th Annual “Dance Under The Stars For Autism” at Beach 97th Street Concession. This year, RBAF is combining the event with our Back-To-School backpack giveaway. For more info, visit: Rockaway Beach Autism Families on Facebook/Instagram.
