Where Disability Planning Needs to Go
Hint - it's not financial planning with a side of Special Needs Trusts and ABLE accounts
If I have to read one more article about what Special Needs parents should do where the focus is opening an ABLE account and/or setting up a Special Needs Trust I’m going to scream. I’m not discounting the importance of a Special Needs Trust, I have both a 1st Party and a 3rd Party to make sure my son doesn’t lose his benefits. ABLE accounts I’m on the fence about, I think it depends on your situation. I DON’T think it’s something an overwhelmed parent needs to make a priority in most cases.
Disability Planning is overdue to become its own Category. In my mind’s eye, I can see professionals with varying specialties. It’s already happening. For example, Annie Tulkin started Accessible College, which offers College Preparation and Transition Support for Students with Physical Disabilities and Health Conditions. According to the National Center for Education Statistics, “nineteen percent of undergraduates in 2015–16 reported having a disability”.
Viewed as a percentage it can be easy to underestimate how much demand this is. But when you use this percentage with real numbers it’s eye-opening. In 2015 there were approximately 17 million undergraduates in the United States (https://nces.ed.gov/programs/coe/indicator/cha). This means there were over 3 MILLION undergraduates in 2015 who had a disability. Sure, not everyone one of them needed the help Annie provides. But if “only” 1% of this population did, that would have been over 30,000 students.
People with disabilities deserve better than to be someone’s afterthought. They deserve professionals who have made it their life’s work to understand what is available. Perhaps more importantly, they deserve professionals who recognize the status quo is broken and are working to change it. I don’t think anyone will argue that the way things were are the way we want them to be. Yet so much of the advice given relies on what has always been done in the past.
Attorneys have had “subspecialties” for years, although in many states they’re not allowed to say they “specialize”. There are lawyers who focus on IDEA and other aspects of Special Education. There are lawyers whose focus is on enforcing ADA and other civil liberties. And there are lawyers whose focus on estate planning includes protecting public benefits like SSI and Medicaid. All of these fall under the Category of “Law”.
Sometimes you may come across an attorney who says they can help you with some or all of these areas. I would be very hesitant to work with someone like this unless they are part of a law firm with different professionals for each “flavor”. In my opinion, there is just too much to know in any one area to be better than an “ok” Generalist. Yes, they can probably figure things out; but are you flipping the bill for their education? Not just in what you are paying on an hourly basis, but also in how your case is decided.
Let’s talk about Financial Advisors, after all, it’s their articles that set me off. I am seeing an increasing trend in Financial Advisors who say their focus is helping families with disabilities. Yet when I go to their websites here’s what I see. Their target market (my words) includes “business owners”, “people in transition”, “retirees”, and “special needs”. There are very few who make it very clear their only focus is helping families with disabilities.
Sure, people with disabilities can (and do) own businesses, get divorced, and retire. But I don’t think this is what Advisors have in mind when they say they do “Special Needs” planning. When I was a Financial Advisor, and I left the industry for good in 2020, this meant working with families whose children had an intellectual and/or developmental disability. Yet I wonder how many Financial Advisors are helping their clients understand the role of Medicaid Waivers in their future planning or discussing the pros and cons of using child-in-care versus taking the spousal Social Security benefit.
My point isn’t to bash Financial Advisors. By and large, I believe the majority are doing a great job for their clients. Often those who specialize in working with families whose children have disabilities have done so because of their own personal experiences. They have seen a need and are doing the best they can to fill the gap. And the most common method of payment for Financial Advisors, Assets Under Management (AUM), may prevent the very same families they want to serve from being helped - because they have not been able to save enough money to meet the Firm’s minimums or make it profitable to the Financial Advisor.
What you don’t see from the outside looking in is everything Financial Advisors have to do to remain compliant with the Securities and Exchange Commission (SEC) and the Financial Industry Regulation Authority. It can require a lot of energy, money, and time. Larger firms have entire departments dedicated to this. In some ways, I feel like Financial Advisors have their hands tied. The industry is really geared towards investment management, risk management (insurance), and “traditional” financial planning - will you have enough money to fund your retirement and other goals?
When I retired from the Navy I went into Financial Services for all the reasons mentioned above. I felt like there had to be a better way. I didn’t see anyone that looked like me serving families. I felt the system was broken, and that it was too confusing for parents. Only later did I learn that I didn’t really know what the “system” was. As I got more involved in preparing for my son’s future I uncovered more and more planning needs that didn’t fall neatly into “financial” or “estate” planning.
So I started Special Needs Navigator in 2017. Back then it was considered an “outside business activity (OBA)” and I had to get permission from the Financial Services firms I worked for to do anything. As the years went by this started taking more and more of my time. Whenever I thought for sure I had mastered something I would find new information taking me down yet another rabbit hole. My desire to share this knowledge led to me starting the ABCs of Disability Planning podcast and Waypoints.
The podcast led to my next “aha”. There are other people who share my passion and are working to make the world easier for those with disabilities and their loved ones to navigate. But we’re splintered. Many of us don’t know about each other, and as a result, haven’t had the opportunity to take advantage of possible synergies. It feels like I come across a nonprofit started somewhere in the country by a mom on a mission almost every day. Sadly I’m afraid most of these will die when the Founder does, despite the amazing things they are doing for their communities.
Unless something changes. There needs to be a unification within the Disability Planning space. It needs to become its own Category. I can already think of subcategories. I started this article with one - planning for college when you have a physical disability and/or health condition. Another example I see gaining momentum is Person-Centered Planning. Kenzie Clark, with ABLE Transition Consulting, has made this her life’s work.
Originally I thought Special Needs Navigator needed to be a provider working directly with families. I’ve since changed my mind. There are people much better suited to this role stepping up. Companies like Vitalxchange are allowing parents who have “been there, done that” share their experiences and knowledge.
No, my role is to be an evangelist and visionary. Special Needs Navigator had to become True North Disability Planning because my “superpower” is helping others find their way. Connecting the dots by introducing professionals to families and each other. Providing experts with the information they need to continue providing exceptional service to their clients.
According to the CDC, 26% of the United States is living with a disability. It is the largest “minority” population in the country. And like so often happens with minorities, they have had little say in what happens to them. This is changing. There is becoming a bigger push for accessible housing and improved employment. There has never been a better time than now to build the Category of Disability Planning. Join me, let’s change the world.