Friday, March 24, 2017

Medicaid Matters Press Conference with Senator Cory Booker (NJ)

Republicans pulled the plug on the House vote to repeal the Affordable Care Act (ACA) with their American Health Care Act (AHCA) bill (aka Trumpcare). This victory is the result of a widespread and tireless advocacy effort by the progressive community and impacted individuals. 

Two days ago, I was given the opportunity to speak at a press conference with Senator Booker (NJ) along with folks who depend on Medicaid (or have loved ones who do), as well as people who work with Medicaid recipients. This effort was led by the ProtectOurCare coalition. The Senator showed heartfelt compassion towards our needs and promised to fight hard for us. 

Senator Booker posted a video of our speeches on his social media to help get our stories out there and show the dangerous impact of Trumpcare

This is the Facebook version of my speech. If you'd like to see the comments, click on the title of the video below


And below is the YouTube version

Below are pictures and tweets about the event

Below is a Facebook version of the short highlights video of the press conference 

And below is the YouTube version

Senator Booker was gracious enough to take a selfie with me!
Senator Booker was gracious enough to take a selfie with me!

Friday, March 17, 2017

I testified at a hearing held by House Democrats on the impacts of the Republican ACA Repeal Bill

Yesterday, House Democratic Whip Steny H. Hoyer held a hearing with House Democrats on the GOP bill to repeal the Affordable Care Act. Whip Hoyer invited me to testify about the importance of Medicaid for children with disabilities. House Republicans did not hold a hearing before the House Budget Committee passed the bill which is unconscionable and irresponsible.

Thank you Whip Hoyer, Congressman Pallone, Congressman Neal, Congressman Scott, Leader Pelosi, and the other Members of Congress for holding this important hearing and for inviting me to testify. What an honor it was to share the crucial role Medicaid has played in Caroline's life

You can click HERE to watch the live video Democratic Whip Steny Hoyer posted on his Facebook wall. My testimony is at the 1:40:00 mark. FYI--the Facebook version is better and you don't need a Facebook account to view the video. You can also watch the YouTube version below but you won't be able to see the speakers because the camera points at our backs.

Pictures from the hearing

Capitol Hill 

Whip Hoyer, Congressman Pallone, Congressman Neal, Congressman Scott, Leader Pelosi,
and the other Members of Congress 

 With Congressman Pallone, Congressman Lewis, Whip Hoyer, Congressman Scott

Dr. Sam Zager, me, Dr. Nitin Damle, Peter V. Berns, Dr. Samuel Ross

My testimony

More information about the hearing

Democratic Whip Steny H. Hoyer (MD-05)
Rep. Frank Pallone, Ranking Member on the Energy & Commerce Committee (NJ-06)
Rep. Richard Neal, Ranking Member on the Ways & Means Committee (MA-01)
Rep. Bobby Scott, Ranking Member on the Education & the Workforce Committee (VA-03)
House Democrats

Economic and Coverage Implications
Doug Elmendorf, Dean, Harvard Kennedy School, Former Director of the Congressional Budget Office
Andy Slavitt, Former Acting Administrator, Centers for Medicare and Medicaid Services
Mike Kreidler, Washington State Insurance Commissioner

Patient and Provider Perspectives
Dr. Nitin Damle, President, American College of Physicians
Peter V. Berns, Chief Executive Officer, The Arc
Dr. Samuel Ross, Executive Vice President, Bon Secours Health System, Inc.
Dr. Sam Zager, Patient Advocate
Marta Conner, Mother of a child with Rett Syndrome covered under Medicaid

UPDATE: Materials from the hearing (including my testimony) can be found on Democratic Whip Hoyer's website HERE

Wednesday, March 15, 2017

"What’s at Stake for Americans with Disabilities in the Trump Era" (Panel at CAP)

On March 8th, I was given the opportunity to tell our story on a panel at the Center for the American Progress (CAP). For information about the speakers and the panel, please click HEREKeynote speech by Anastasia Somoza. 

You can watch our conversation by clicking HERE

Photo credit: CAP

Wednesday, March 8, 2017

The House Republican Plan for Medicaid Would Put My Daughter’s Life At Risk -- my blog post on

This blog post was first published in Please click HERE to see it.

My daughter, Caroline, is seven years old. She is funny and smart and obsessed with Disney princess movies and loves books about dinosaurs. Caroline also has Rett syndrome, a neurological disorder that interferes with her ability to control her body. She can’t talk, walk, or use her hands.

Her symptoms first appeared a little after she turned one. She still wasn’t walking or crawling, but otherwise she was healthy and was hitting her milestones—she could say about a dozen words, feed herself, and play with her toys. But when she was around 14 months old, we noticed that Caroline was making repetitive movements with her hands that didn’t seem voluntary. Within a couple of weeks, she started losing her words and choking on her food. Eventually, she started losing her ability to hold things with her hands. We finally got her diagnosis when she was 17 months old.

Now Caroline takes about ten different medications, multiple times a day. She takes 4 different types of medication for her seizures, which she has about 90 times a year. Without them, she would probably seize all throughout the day, every day. She undergoes a couple of hours total of lung treatment every day to avoid pneumonia, and takes other medications to relax her stiff body, make sure she doesn’t vomit all the time, and help her sleep. Her involuntary movements keep her up at night, and if she didn’t take medication she would only get a couple of hours of sleep every night.

Without Medicaid, I don’t know if we’d be able to afford this treatment. For Caroline, this is a matter of life and death.

Medicaid helps cover the cost of co-pays, treatments, medical equipment, and other expenses that our insurance doesn’t cover. Those out of pocket costs usually add up to about a couple thousand dollars a month. Without Medicaid, we wouldn’t be able to afford the hospital-grade equipment Caroline needs—like the cough assist machine, the nebulizer, the oxygen supplies, and the nursing staff. She used to spend several weeks in the intensive care unit almost every time she caught a cold. But because of Medicaid, and the medical equipment it helps cover, she only had one hospital visit last year.

Medicaid also offers several hours of skilled nursing care, which allows my me and my husband to hold jobs. Without that coverage, one of us would have to quit our jobs—then we would not be able to afford all of the medical care that Caroline needs. That alone would put her life at risk.

I never imagined that I would have a child who would be dependent on us for every aspect of daily living for the rest of her life—from changing her diapers, to repositioning her to make sure she is comfortable throughout the day. And I never imagined that we would depend so much on a program like Medicaid.

But I also never imagined that I could love someone this much.

I want Caroline to live. I want her to feel safe, I want her to feel loved, and I want her to live in our home so that I can take care of her for as long as she is alive. Medicaid is the only way for us to be able to do that.

I would like to invite President Trump to meet Caroline and spend time with her, or with other kids like her. I think he would see first-hand how Medicaid helps us function as a family.

A short video about the role of Medicaid for Americans with disabilities featuring Caroline

Caroline and I had the opportunity to participate in a video produced by the Center for American Progress and the Arc about the role of Medicaid for Americans with disabilities. 

Repealing the Affordable Care Act (aka Obamacare) will result in 15 million Americans with disabilities losing Medicaid which would put lives at risk and force people like Caroline into institutions.