"How a Society Treats its Disabled is the True Measure of a Civilization"
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| Our Local Women's March, January 2017 |
"If you're on Medicaid a lot could change. Medicaid Expansion states will roll back benefits so people who have benefits that aren't required under the program--that's a lot of the care for people with disabilities--will be rolled back over time. Those are a lot of the benefits for people with disabilities who will lose coverage."
--NPR--
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| Celebrating My 40th |
I am here today to say this:
I am the face of Medicaid.
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| Celebrating a Birthday In Bed |
I am a person with a disability.
I receive Medicaid by necessity.
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| Being Serenaded in Bed |
Without Medicaid I would have no health insurance.
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| Solace on the Hard Days: Puppies |
My family would be bankrupt.
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| The Power of Family |
I would be without the care I desperately need.
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| The Sacrifices of A Caregiver |
It has taken me a very long time to get up the courage to write this post, to speak up about being a recipient of Medicaid, and to realize that I must speak up to reduce the shame many of us feel about being Medicaid recipients.
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| Crashed Out In Bed with Tovah Rose |
But I am tired, weary, frustrated, scared, anxious, stressed, angry and overwhelmed by
1. the misperceptions of people who receive Medicaid, and
2. the threats to Medicaid that could drastically impact my quality of life.
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| Out and About |
When I thought about writing this post, I thought about the shame I felt. I thought about how we perceive people with disabilities and those who receive Medicaid. I thought about silly things like wondering if sharing my story would make me 'un-dateable' or make people look down on me.
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| Pajama Day! |
And then I thought a lot harder about that.
If people look down upon me for being a person with a disability who receives Medicaid that is about them, not me.
If we are going to reduce stigma, I must speak out.
Long before I got sick, my sociologist parents taught me that we must take care of our most vulnerable. Now, I am one of those most vulnerable citizens.
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| One of the First Times I Could Wear a Dress |
Let me explain a little more about what it means to be the face of Medicaid.
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| Those Early Years: Spent in Recliners! |
In this country, we have a lot of misperceptions about people who are on Medicaid and why.
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| How I Worked at My Computer |
I am an educated woman who comes from a middle-class family.
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| Thank G-d For My Dad |
One month and one day after my graduation from Davidson College, I got sick.
I was 23 years old.
I am now 41 years old and rely on Medicaid as my source of insurance.
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| Asher's Love |
Early on, I was able to COBRA off of my dad's insurance through his work. This still cost our family thousands of dollars a year in out-of-pocket expenses.
Once that was no longer an option, I applied for disability.
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| Snuggles and Crashing Out |
Because I got sick AFTER I turned 23, BUT before I had worked long enough to pay into the system, I only qualified for Medicaid and Supplemental Security Income.
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| Big Cheerleader |
Had I gotten sick before the age of 23, I would have been eligible to receive Social Security Disability Income and Medicare. This would have left me in a much more secure and much less precarious position.
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| Celebrating a Victory |
I'm stuck in a bit of a funny place because of the timing of when I got sick and the fact that I had not worked.
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| Rejoicing in Being Able to Attend An Awards Ceremony for Dad |
My ONLY option for health insurance and any source of income is to have Medicaid and Supplemental Security Income.
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| More Recliner Time |
The process of applying for disability is one of the most demoralizing processes I have ever endured in my life.
Let's just say that I would not choose to apply for disability 'just to get a government payout'.
The tears, the trials, the denials, the appeals aren't worth it.
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| Smiling Through Pain |
We have a perception in our culture that those who receive Medicaid are the 'poor and undeserving'.
In fact, most people on Medicaid are hard-working individuals who still can't make ends meet, people with disabilities like me, people with intellectual disabilities, children who need extra services or the elderly.
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| Dad Never Loses Faith in Me |
We also perceive that Medicaid isn't really working for its patients.
But people on Medicaid have as high or higher satisfaction ratings for their care as people with private employer insurance.
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| The Best PCP! |
Because of a combination of things: Medicaid, hard work on my part, the support of family and the dedication of the practitioners who care for me, I am here today.
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| Dr. Rowe and Me! |
Since the ACA and Medicaid Expansion (which PA opted into), my care has improved dramatically.
My care team and I used to spend hours, days, weeks, sometimes months, trying to get medications or supplies that I desperately needed.
Since the Medicaid Expansion, I've had much greater access to the care I need, the medications I need, the preventative care I need, and I spend my limited energy living my life and working on healing rather than fighting for what I need.
I don't think that it's a coincidence that my health has DRAMATICALLY improved since the implementation of the Medicaid Expansion.
Until now, I've never spoken out about what really happens to a family financially when someone gets sick.
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| First Rolls Outing |
There is a perception that somehow a middle-class family could easily care for an adult child with chronic illness.
This is simply not true.
Even with Medicaid, many things I need are not covered, my family spends exorbitant amounts of money to cover out of pocket expenses, my only option is to live at home, my mom retired early drastically reducing her retirement income so that she could care for me, and my dad is still working at the age of 74.
The physical, emotional and financial demands on our family have been tremendously taxing.
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| Anniversary of Getting Sick: Grieving the Losses |
I can assure you that Medicaid is a necessity for me and my family.
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| Missing My Being My Friend's Maid of Honor, She Sent me the Bouquet I Would Have Carried |
Behind our smiles is struggle and worry.
We worry about what will happen to me, who will care for me, if Medicaid will still be there, if the ACA will be there.
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| Oh, So Many Days of Reclining and Pajamas |
With my current coverage, I have the best medical team I could ask for, access the the medications I need and improving health.
With the ACA, I have the security that if, for any reason, I no longer qualify for disability, I would be able to buy coverage.
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| A Mother's Love |
Now, all of my care feels up in the air and terrifyingly uncertain.
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| My Baby Girl Arrives |
Will we go back to the days when we didn't have the Medicaid Expansion?
Will I have to fight for every medication I need?
Will I stop getting the preventative care I need?
Will I have to fight to see the doctors I have established my relationships with?
Will I lose Medicaid completely?
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| Celebrating the Victory of Being Able to Sit UP to Paint This |
Will I be forced to go back to work?
Will I fail at that and be left with no options for insurance?
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| Puppy Time and Reclining |
I look back at the photos I have chosen to post here. I look at the days when I celebrated my birthdays in bed or in a recliner. I look at the photos of me in my wheelchair. I look at the photos of me walking and smiling.
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| Cooling Vests and The Rolls |
Which life do I want to live?
Of course, I want to live this new, healthier, happier life.
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| Celebrating Asher's Birthday |
It hurts to look at these old photos, when every minute of every day was filled with suffering and pain.
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| Thank Goodness for Good Companions |
I don't want to go back.
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| Of Course G Wants to Nap! |
My prescriptions cost thousands of dollars a month. Medicaid got me the Rolls, which allowed me to leave the house after many years of being completely homebound. Medicaid means I get to see the doctors who will care for people with a complicated illness like mine.
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| Enjoying Outings |
My health and my healthcare shouldn't be at the whim of whatever the political tide of the time is.
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| My Healing Place |
I wake up every day worrying that the rug will be pulled out from under me, that I will be a bag lady, that I will be terribly sick again, that my parents will lose everything.
I watch my parents struggle.
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| Yes, More Pajamas |
My fight needs to be focused on getting better, not worrying about whether or not I will have Medicaid.
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| The Year We BOTH Spent Feeling Lousy and Wearing Pajamas! |
Disability does not discriminate.
Disability is not a choice.
Being on Medicaid is not a choice.
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| The Opportunities the Rolls Gave Me |
We owe it to our most vulnerable citizens to provide them with healthcare.
I am the face of Medicaid.
Please remember me the next time you think that people on Medicaid are on it to take advantage of the system.
I am just like you. I want to live my life to the fullest. I seek out joy and love in the midst of life's many challenges. I take advantage of my good days and I crash out on the bad days. I am resilient and perseverant. I just need a little extra help in the form of Medicaid to have a shot at feeling better and living a meaningful life with disability.
While there is a small handful of people who do take advantage of the system, I would rather we maintain Medicaid and other safety nets for the benefit of the greater good.
I'm grateful for Medicaid.
It may not be perfect, but it's a lifesaver.
I want the security of knowing that Medicaid will stay in place, that we will work as a society to improve it, and that over time, we will make sure that people like me never again have to worry about whether or not we will get the care we need.
I am here today to say:
I am the face of Medicaid.
I have a disability.
Please take care of me.
Please keep my family from going bankrupt.
Please assure us certainty.
Please take care of our most vulnerable citizens.
Blessings,
Emily
Photos: I have chosen a selection of photos from the past 12 years (I don't have any from before 2005 on my computer). I wanted to show some authentic pictures of what being sick looks like--the good days and the bad days. Going through these photos was painful, hard and difficult. It brought back traumatic memories. It reminded me how far I have come, and why I so badly want to preserve the health and healthcare I've fought so hard to get.
