Like many financial advisors, I am self-employed. Starting out as a sole proprietor worked fine while I was building a book of business, but I am now at a point where growth can hurt my disability benefits. Of course, I would gladly give up my Social Security check and work full time. I love my job!
However, losing my healthcare coverage from Medicare and Medicaid is too risky. I have Spinal Muscular Atrophy and am confined to an electric wheelchair. One hospital stay could bankrupt my whole family. Wheelchairs cost as much as cars and accessible vans are priced as luxury cars. Sadly, vans are not covered by insurance as necessary medical equipment, but that’s a problem for another day.
My parents were told I wouldn’t live longer than 2 years. Now at 42 years old, I need to begin planning for my life after my parents can no longer care for me. My father is already in a Long-Term Care facility battling Parkinson’s Disease. My mother is in her 70’s.
Under the current rules, I can earn $1,620 per month ($19,440 annually) in 2025 and must keep my total resources under $2,000. 
Notice that it isn’t even close to the six-month salary savings rule all financial planners preach to our clients. My December revenue before expenses was approximately $1,400, so I am getting close to the danger zone. Add my Social Security Disability payment and I am over the $2,000 limit for a day or so until I pay bills.
I would love to be off the system. For me to even have a chance of full independence and pay for 24-hour care I would need around $300,000 in annual revenue. That’s a small number for most businesses, but it’s huge when you’re only allowed $2,000.
I need a way to restructure from a sole proprietorship to an entity where resources can be accumulated without hurting my current benefits.
This entity would be allowed to invest money in order to build wealth. It would pay my salary as a financial planner and eventually pay staff. The staff would both help me manage the business and help with my daily healthcare needs.
Currently, I am enrolled in the CAP-DA program, which allows me to hire my own personal care assistant. This person is allowed 40 hours per week. They are paid through Medicaid, so losing this benefit can be a major burden on my family. Paying for this myself would require approximately $41,000, which is twice the above annual earnings limit and 20 times the resource limit.
Programs like the ABLE Act are steps in the right direction, but they still have limits that are less than my revenue needs. Even my Special Needs Trust restricts contributions to anyone other than me. If I contribute to it, then it becomes a first-person trust and could be counted in the $2,000 resource limit.
Basically, the system covers every angle, preventing people with disabilities from building wealth.
One attorney said they watch you like a buzzard, waiting to pounce on your error instead of trying to help. It is a special type of pain to be accused of taking advantage of the system when all you’re doing is pursuing independence from that system.
The cruel irony is that a stranger like Elon Musk could give $5 million to my Special Needs Trust and not affect my benefits, but me earning $5,000 one month on my own would cause me to lose everything. Of course, if Mr. Musk wanted to give me $5 million, I would take it, but he cannot do that for all people with disabilities.
The rules need to be changed as many of us are not looking for handouts.
Like every other American, I just want the opportunity and freedom to build wealth. Imagine taking all of the steps needed to qualify for a career and being told you can only go so far because you have a disability. If that occurred in the private sector, lawsuits would be filed and the media would be all over the story. I would probably be invited to the White House as a hero! Unfortunately, it’s hard to get our lawmakers’ attention when the government caused the problem.
I love my country and I don’t believe the US Government is discriminating against people with disabilities on purpose. They just don’t know and need to be informed. Currently, advocacy groups are trying to get legislation passed to increase the resource limit, but I don’t have time to wait as long as it takes to get things done in Washington, DC.
We live in a time where a billion-dollar industry, such as college athletics, can be considered a nonprofit. Where bananas and duct tape sell for millions as art and things like cryptocurrencies are created out of thin air by an idea. Ironically, Sam Bankman-Fried probably would still be a free man if his legs didn’t work. He wouldn’t have been able to build up the resources needed to fund his schemes. That puts things in perspective, doesn’t it?
I know that there is a corporate lawyer or entrepreneur somewhere that can help me solve my problem. 
There has to be a legal way to live my American Dream, but I need someone to point me in the right direction. Please share my story to all who may listen and email me your ideas at jonathan@jonathangreeson.com.
