For people with disabilities the question of being employed is a complex one because they often have to choose between financial independence and the vital services they require for survival.
My name is Jason Hahr but I go by Jay. I am your typical 37-year-old. I have many hobbies and goals that I want to accomplish in my life. I have a disability known as cerebral palsy. Cerebral palsy affects each individual differently. In my case, I am confined to a wheelchair and rely on personal supports to act as my hands and feet the majority of the time; in fact, because my voice recognition software is temperamental, I often have to dictate stories such as this one to my support staff. I have the cognitive skills to perform work tasks and, given the right technology and support, I am able to produce high quality work.
With that being said, I have many fears about full-time employment and it’s my opinion that having as severe a physical disability as I do creates a significant disadvantage when it comes to employment. To understand why I feel this way it’s important that you know a little bit more about me. I needed the assistance of others to perform some of my daily activities when I was younger, but I used a walker and was not confined to a wheelchair. My parents did not treat me like I was “special.” I had chores and responsibilities just like everyone else.
I did not realize I was “different” until later in life. My parents raised me to believe that I could do anything I wanted to as long as I put in the work, but sadly, society was waiting for me with a reality check.
I have told the following story in other pieces for FSACentral but I think it is important to share a brief version again here because the events that transpired made me rethink my disability. In graduate school I was denied the opportunity to student teach on the basis of my disability. The university administration felt that I was “too disabled to teach,” believing I would need so much physical assistance I would not be able to manage a classroom. They saw me as incapable of being independent and they didn’t want to pay two people to teach.
This situation along with family circumstances changed the direction of my life. I was forced to confront the fact that even though my family and I didn’t see me as different, others did. Since then, I have been forced to face a new reality that often rears its ugly head when it comes to employment. Before the incident in graduate school I had not taken into consideration that I would lose my aide care services if I obtained a job, full-time or otherwise, whose earnings exceeded Medicaid income limits. Up to that point I viewed my disability as only a small part of who I am. While I still believe that I often find myself facing a society that sees my disability first.
I had not considered disability from a financial standpoint until then. My hope is to still obtain a full-time job one day, but I question whether that will, or should, ever happen because of the amount of physical care I need. Thankfully, my aide care expenses have always been covered by Medicaid’s Home and Community Based Services via one of the approved waivers that allows me to live independently. Most private insurance policies that an employer would offer me would not cover the cost of my care, which is why many people with disabilities are in the same predicament I am. Medicaid provides, not perfect, but comprehensive care for me to live independently; but in order to keep it I must live near a poverty level.
Florida does have programs designed to help people who require a high level of personal care to stay on Medicaid and earn more – not necessarily a lot more – than the Medicaid income limits. I am going to highlight four here.
The newest program is Working People With Disabilities (WPD). To qualify for Working Peoples one must be receiving Home and Community Based Services from one of the following Medicaid waiver programs: Long-Term Care, Familial Dysautonomia, Model, and iBudget. Although the 2023 income limits are higher, the latest we could find published online are from 2021 on the Agency for Health Care Administration’s (AHCA) website. The 2021 annual income limit was around $52,000, which is significantly more than the traditional Medicaid income limit for an adult with a disability. Enrollees could also retain $13,000 in assets in 2021.
If by chance I were to get a job where I would exceed the updated 2023 amount in the WPD program, I have additional options that allow me to earn more. One is a Qualified Income Trust that allows one to use funds earned over the limit for personal care and other expenses related to disability and employment. Setting up a QIT can be complicated and requires an attorney to ensure it is done correctly. There are other trusts that may be advantageous that a good disability attorney can assist you with.
Another option that can be combined with WPD is an ABLE account, which allows a person receiving SSI or SSDI benefits and/or Medicaid to save money without jeopardizing their eligibility for those benefits. Income earned over the limit can be deposited in an ABLE account and be used for personal care and other related expenses. Florida’s ABLE accounts administrator is ABLE United. Information on how to open and criteria needed for an ABLE account can be found here.
For those in the workforce not receiving social security benefits and not on any of the waivers, there is a program known as The James Patrick Memorial Work Incentive Personal Attendant Services and Employment Assistance (JP-PAS) Program. Enrollees can be reimbursed for some or all of their personal care attendant services in order to attain and maintain competitive employment in an integrated workforce. To be eligible for this program one must be employed and earning income at least at the poverty level, no longer receiving SSI/SSDI benefits, nor using a Home and Community Based Services waiver.
A Medicaid buy-in program with a high-income limit, while not perfect, would simplify things for people with disabilities in Florida. Medicaid buy-in would also contribute to its enrollees’ dignity by allowing them to share in the cost of their health insurance. Disability advocates will once again bring the need for Medicaid buy-in in Florida before the state legislature in the upcoming 2024 legislative session.
Yes, these programs would offer assistance in offsetting some of my aide care costs if I earned more. However, all, while helpful, have limitations. For instance, many of the trust programs require money left in the trust to be returned to Medicaid upon the beneficiary’s death and dictate how funds can be spent.
In my heart of hearts I want to be gainfully employed and contribute to Florida’s economy through payroll taxes and sharing in the cost of my health insurance like other young men and women my age. Providing an incentive for me to earn to my potential is a win-win for me and the taxpayers of Florida. The cost of my aide care via Medicaid is not going to change, but could be reduced for the taxpayer, maybe just a little at first, if I am allowed to work and earn to my potential. If I continue being unemployed or under-employed, Medicaid pays the entire bill. If I am allowed to work, the more I earn, the more I could contribute to that care via Medicaid buy-in and, with hope, eventually take on a larger share as my earnings increase.
I am not giving up on the dream of full-time employment, I am only trying to consider all that may be involved when one has a severe physical disability. I hope the information I provided inspires others to advocate for Medicaid buy-in or other, better employment incentives that allow people with disabilities to contribute and flourish with fewer limitations. As a final note, please be aware the opinions and concerns in the last paragraph are mine and mine alone and do not reflect those of this publication or any other entity.