Tag Archives: Paralysis

The AHCA and Paralysis


We are pleased to publish this guest post on our SPINALpedia blog by the Outreach Team at Disability Benefits Help.

On May 4th, the American Health Care Act, or AHCA passed in the House of Representatives. This new healthcare bill is the first attempt at repealing the Affordable Care Act. The AHCA has some sections that are concerning for people with paralysis or another spinal cord injury. Here are some ways the AHCA might affect you and your family if the bill does pass as-is:

1. You might have higher premiums

While the AHCA assures us that everyone will have access to health care, the MacArthur amendment does allow states to file for a waiver that exempts it from some components of the Affordable Care Act. With a waiver, insurance companies in some states could charge people with pre existing conditions significantly more than healthier young adults.

So how much would paralysis cost? It’s hard to know exactly how much your premium could rise, but paralysis would without a doubt be considered a preexisting condition. The amount your insurance might rise would depend on your age and the state where you live, but this interactive map can give you some kind of idea how much you might be affected before paralysis is factored into the equation. Some people see the cost of health insurance rise by $40,000.

What’s more detrimental for people with paralysis or another catastrophic spinal cord injury is the MacArthur amendment allows insurers to put lifetime caps on those with preexisting conditions or disabilities. A catastrophic injury like paralysis can cost over $5,000,000 over someone’s lifetime. A lifetime cap would leave millions of people with paralysis without insurance.

2. Funding would be allotted for people with catastrophic injuries, but the AHCA has not given enough.

The AHCA includes high-risk pools for people with disabilities who are denied insurance, such as those with a spinal cord injury. The AHCA set aside $130 billion over the next decade to help fund these pools and get everyone insurance, but this plan would only work if a handful of small states file for the MacArthur waivers.

Some experts believe $130 billion is not nearly enough funding. Conservative estimates guess that the pools will need $25 billion per year to cover everyone in need. This means the pools need an additional $100 billion to work as planned.

3. If you or someone you love is in an assisted living center, you may lose insurance.

One of the biggest changes the AHCA looks to make is cutting funding to Medicaid. Many people with paralysis live in an assisted living center, which can cost over $100,000 per year out of pocket. Medicaid supports millions of people with disabilities and makes specialized care possible. Up to 60% of people in assisted living centers and nursing homes are enrolled on Medicaid.

Currently, Medicaid is an entitlement program. This means states receive funding as needed for people who qualify. As the AHCA stands now, Medicaid would become a grant program. This would again potentially impose lifetime caps, which is simply not an option for someone with a catastrophic spinal cord injury due to the enormous costs of health care.

What can we do?

The most important thing to keep in mind is that the AHCA is not law yet. In fact, the Senate has expressed that it wishes to rework the health care bill to make it better for all Americans.

You can call your local Senators to tell them to vote NO on the AHCA. Find the contact information for your local Senators here and call them directly.

The AHCA is completely unacceptable for millions of Americans, but we can fight to make health care accessible for everyone.

This article was written by the Outreach Team at Disability Benefits Help. They provide information about disability benefits and the application process. To learn more, please visit their website at http://www.disability-benefits-help.org or by contacting them at help@ssd-help.org.

Guest Post: Parenting with a Disability

This guest post on Parenting with a Disability comes from Alicia Reagan!


As a little girl, I had so many baby dolls! I named them, changed them into their jammies at night, and played with them as much as I could. I couldn’t wait to grow up and have a bunch of real babies. This was an actual talking point with my husband before we married. I wanted to make sure that he loved the idea of a large family as much as I did. He did.

In March of 2009, I was 5 months pregnant with my 6th baby. I got very sick and was in a tremendous amount of pain. I lay down to take a nap and when I woke up, I was completely paralyzed. After much time and testing, I was diagnosed with Idiopathic Transverse Myelitis. Paralysis, and a life raising all of my children from a wheelchair, was NOT in my game plan.

After almost 5 years in my chair, and having a houseful of kids that range from toddler to teen, I have a few things I would like to say about parenting. There is much written about parenting a special needs child, but little written about being the parent with the special need. Here are some things that I have learned.

1.We are capable of being great parents!
I cannot tell you the times that people will be shocked to learn that as a paralyzed woman, I am capable of having children. Women in chairs can conceive and carry a baby like other women. Modern medicine can help couples where the man is disabled. Depending on your disability, you will definitely have to plan around your disability and your specific needs. Our disability is a factor in having children, but it is certainly not the deciding factor. If you want a family, go for it!

2. My children are not my aides.
I think this is important to remember. I see people look at my children with such pity at times and it really makes me want to scream! They are my kids. They do not suffer. They do not take care of me. We are a big ship to run….even before I became paralyzed! My children do their share of chores. I want them to know how to make their beds, clean their room, do laundry, cook, and take care of the yard. They did these things before my chair and they still do them. I love how my children love me and desire to help me out, but my children do not take care of me.

3. We can give kids what they need.
Typical parenting has many physical stereotypes. Commercials are full of dads throwing footballs, moms running the soccer car pool, hiking with your family….are you feeling all of the physical activity?I think one of the reasons that disabled parenting gets such a negative response is because we don’t necessarily fit the typical active parenting mold. I don’t think we have to be all that to give our children what they need.

I think that the most important thing that you can give children is not activity. It is love, attention, quality time, and focusing on their precious hearts. My kids love activity, and I get in on as much of it as I can, but realistically I cannot do what I used to do with them. Do you know what I have noticed though? I have a lot more time to just sit and listen to them. I have a lap that is always available for my little ones to climb up on. There is more time to watch cartoons with them on days I don’t feel as well. I have had more one on one time with my kids since I became paralyzed than I did before. Our relationship has become much better…not worse. Even with a teenager!

4. We will improve society.
As parents with disabilities, we are raising kids who will enter society with a heart for the disabled. What a gift that we wish many more had! My kids already find the special need kids to be a friend too, and my older ones have already told me that they would have no issue at all with marrying someone with a disability. I love that!

5. Being a mom, helps me deal with my disability.
My kids are one of my greatest reasons to deal with the frustrations that can come with being paralyzed. They are watching me. They are learning, by my example, how to handle hardships in life. They are learning about attitude, confidence, acceptance, resolve, determination and happiness. Knowing they are watching me handle this disabled life makes me humbled to show them the right way. It is a wonderful reason to get up and get going in the morning.

Being a mom is a precious gift. I did not choose to become paralyzed, but if it had to happen, I sure am thankful that I am surrounded by my children. Life is beautiful…especially when you are a parent!

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