What will it take to protect stable health care access for all disabled people? We encourage you to read this commentary on the process of disability documentation under Medicaid from Theo W. Braddy, Executive Director of the National Council on Independent Living (NCIL). Mr. Braddy is a member of AAHD’s Board of Directors. This piece was originally published on the NCIL website. It is re-printed here with permission. You can listen to an audio version of this piece on the NCIL website.
Every six months, the system will ask me a question it already knows the answer to.
Am I still disabled? I know that sounds ridiculous.
It sounds ridiculous because it is.
I became a C4 quadriplegic at the age of fifteen after a high school football accident.
That was fifty years ago. My spinal cord injury is permanent.
Unless someone discovers a miracle cure, I will remain a quadriplegic for the rest of my life.
That is simply a fact. Yet every so often, I and millions of others with permanent disabilities are asked to prove it over and over again.
There is much I can say about the new Medicaid work requirements, but that’s another topic.
However. I couldn’t let this one go by without addressing it.
Beginning in 2027, under the new Medicaid work requirement rules, many people seeking an exemption because of a disability will have to repeatedly document or verify that they qualify.
The process begins.
The paperwork arrives.
The forms must be completed.
Medical documentation must be gathered.
Deadlines must be met.
The system asks, in effect, “Are you still disabled?”
My answer is the same today as it was fifty years ago.
Yes. I am still disabled.
What has changed? Nothing.
Except the amount of paperwork.
Now, I understand that government programs have a responsibility to protect taxpayer dollars and ensure that people remain eligible for services.
Reasonable oversight is part of good government.
But there is a difference between accountability and unnecessary bureaucracy.
When someone has a permanent disability that is not going to improve, repeatedly requiring them to prove what everyone else already knows serves very little purpose, but causes a lot of harm.
It creates additional unnecessary work.
It creates frustration.
It creates additional barriers.
And sometimes, it creates tragedy.
Because the real problem is not the paperwork itself.
The real problem is what happens when people cannot successfully complete it.
Imagine trying to fill out lengthy forms when your disability affects your vision, your cognition, your dexterity, or your ability to communicate.
Imagine trying to upload documents on websites that are not fully accessible.
Imagine trying to schedule appointments when transportation is unaffordable, unreliable, inaccessible, or simply unavailable.
Imagine trying to navigate a complicated process while living with chronic pain, fatigue, or serious health conditions.
For many people with diverse disabilities, these are not hypothetical situations. They are everyday realities.
Then imagine missing a deadline. Not because you were no longer disabled.
Not because you were trying to abuse the system.
But because the system itself became another barrier. The result can be devastating.
Healthcare is interrupted. Personal assistance services are delayed, or worse – terminated.
And typically, it happens when you finally got things working well and all your needs were finally in place.
Prescriptions are interrupted. Supports that allow someone to live independently are suddenly placed at risk.
Sometimes people lose benefits simply because they could not successfully navigate the paperwork, not because they were no longer eligible.
That should concern all of us. Because Home and Community-Based Services are not luxuries.
For many people, they are the difference between living independently and entering an institution.
They are the difference between working and staying home.
Between participating and being isolated.
Between living and merely surviving.
As a person who has lived with a significant disability for most of my life, I have learned to adapt to many things.
I have adapted to using a wheelchair.
I have adapted to directing my personal care attendants.
I have adapted to driving without the balance of both of legs.
I have adapted to living with a spinal cord injury.
But one thing I have never understood or want to adapt to is why people with permanent disabilities are repeatedly required to prove what is permanent.
If my disability is lifelong today, it will still be lifelong six months from now.
The paperwork may change. The forms may change. The deadlines may change. But my spinal cord injury will not.
There has to be a better way.
Government should absolutely protect the integrity of its programs.
But it should also recognize the difference between temporary conditions and permanent disabilities.
It should not create unnecessary administrative burdens that place people’s healthcare, independence, and community living at risk and cause harm.
The goal should be preventing legitimate fraud, not preventing eligible people from receiving the services they need.
Sometimes, the greatest barrier is not my disability. It is the system that keeps asking me to prove it.
We continue to work to remove physical barriers, change attitudes, and expand opportunities for people with disabilities.
Now it is time to remove unnecessary bureaucratic barriers as well.
Because paperwork should never become the reason someone loses the supports they need to live and survive.
And after fifty years as a quadriplegic, why do I have to keep proving that I’m still disabled?
After all, the system could just ask my attendant care workers that question! They know!
This is Theo W. Braddy, Executive Director for the National Council on Independent Living. Until we meet again. Bye-bye now.
Theo W. Braddy has advocated on behalf of people with disabilities for over 40 years. At the age of 15, he became a person with a disability due to a high school football accident that left him paralyzed from the neck down. In 1988, Braddy was hired as CEO of the Center for Independent Living of Central Pennsylvania, where he served for over 30 years. As CEO, Braddy created an independent living center that became a strong and growing voice for people with disabilities, and started the Living Well with a Disability Initiative. He currently serves as Executive Director of the National Council on Independent Living (NCIL). He has taught at Temple University and Millersville University as an Adjunct Professor. Two different Governors have appointed Braddy as a Commissioner for the Pennsylvania Human Relations Commission and to serve on the Pennsylvania Statewide Independent Living Council. In 2021, Governor Wolf appointed him to serve on the State Board of Vocational Rehabilitation. In 2022, Braddy was selected by Senator Robert Casey, Jr., as one of four Black leaders in Pennsylvania who has demonstrated power and persistency in overcoming challenges and creating meaningful change in the State, and his contribution was acknowledged on the Senate Floor at a Congressional Hearing. He graduated from Temple University with his MSW in 1988 after receiving his BSW from Edinboro University.