Justin laying in hospital bed, brother sitting in chair with game controller
Advocacy, Health, Political

On the Issue of Disability Rights: Healthcare

I have been pretty nervous about plans for repealing and replacing the Affordable Care Act (ACA). Representative Ryan’s plans for the Medicaid Block Grants and Per Capita Caps could have drastic impacts on people with disabilities, like me. To explain this, let me share my story.

Dad holding Justin in hospital bedI had 6 surgeries within one year. I don’t recommend this because it involves a lot of time in hospitals, a lot of pain, and a lot of worry. My deep brain stimulation (DBS) surgeries cost about $100,000 each. The first DBS surgery was followed by a serious staph infection that required the removal of the deep brain stimulation leads going deep into my brain along with the stimulator implanted in my chest. DBS was my hope for getting better control of my cerebral palsy, so I repeated the DBS surgery the next summer. Within that time, I also had several additional minor surgeries.

As a person with a severe physical disability, I also have a lot of expensive specialized equipment.

  • A power wheelchair that costs about $15,000
  • My specialized seating system that goes into the wheelchair that costs about $6,000
  • An augmentative communication device that costs $8,000
  • A Hoyer lift helps my support staff and parents transfer me from the bed to my wheelchair to a toilet chair or shower chair that costs several thousand dollars
  • A toilet and shower chair that costs about $4,000

You cannot begin to imagine how expensive it is to have a severe disability. Even with good private health insurance, the copays for durable medical equipment or for equipment that I need that is not covered by health insurance would be outrageously expensive.

Justin sitting on Mom's lap in chair next to hospital bed

I need 24-hour care to help me with ALL my basic personal cares. Imagine that you have to depend on another person to give you a drink of water if you’re thirsty, feed you if you’re hungry, and help you go to the bathroom when you need to go. It’s important for people to realize, that I can do what I do, because I have special equipment and support staff to help me do these things. Without an adaptive keyboard and joystick mouse, I would not be able to write or use my computer. Have I mentioned a wheelchair accessible van with a lift or ramps to my house? Those are pretty expensive, too.

This is why people with disabilities NEED Medicaid – to help cover the many costs that many people never have to worry about and get the equipment and staffing support we depend on to help us live independent lives.

So, what impact would the proposed cuts to Medicaid or per capita block grants have? For Minnesota alone, over the next ten years, it could result in a $15 BILLION reduction for Medicaid funding. That’s BILLION with a B! Some people would say that’s fantastic, the government needs to cut costs. But, we need to realize that cutting costs doesn’t reduce the very real need and costs that people with disabilities and their families will have. This huge of a cut means that there are three alternatives to deal with the lowered amount of federal funding coming to our state. Our state can:

  1. Narrow who receives Medicaid services
  2. Cut or limit the services that are provided
  3. Cut the reimbursement rates to providers

Any of these options or combination of all three will mean real harm to people like me who depend on Medicaid services and supports to live our lives. It could result in people having to be institutionalized to receive the care they need. After all the progress made over the past several decades in moving towards the right for people with disabilities to live full lives in our communities, the Medicaid Block Grants or Per Capita Caps would be a huge step backwards!

 The Medicaid waiver that I am on provides flexibility to hire support staff that I choose and helps cover extra costs that I have because of my disability. I don’t want to be forced to give it up for going back in time to a system that is filled with isolation and exclusion of people with disabilities. I don’t want to be forced to live where I don’t want to live. I want to live with as much choice and independence as possible. Isn’t this what anyone would want?

Please contact your representatives in Congress and let them know that disability rights are human rights and that we should be strengthening programs such as Medicaid that help people with disabilities lead full lives in their communities instead of ripping them apart.

We must ask ourselves, what kind of world do we want to live in?

originally published April 16th, 2017

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