Tuesday, March 28, 2017

Caroline's Medicaid story in the Guardian

I was given the opportunity to be interviewed by Mary O'Hara, the reporter who wrote this article about the impact of Trump's Administration on the most vulnerable Americans. The article includes Caroline's Medicaid story. As a society, we will need to keep fighting for each other against the threats of dangerous policy proposals.

News article below
For a link to the news aricle, please click HERE
America rose to defend healthcare. But Trump’s attack on the poor is not over
Mary O'Hara
Obamacare will be the law of the land for the “foreseeable future”, the speaker of the US House of Representatives, Paul Ryan, admitted in the aftermath of the abject failure of Donald Trump or the Republican party to “repeal or replace” Obama’s flagship Affordable Care Act (ACA) after seven years of bleating about it. The colossal and humiliating collapse of the proposalswas met with jubilation last Friday by millions of people, especially the poorest and disabled, who were in line to lose access to healthcare if the American Health Care Act had been successful.
Watching the events unfold I wondered: what if there had been a similar sudden downfall of the austerity programme in the UK in those early days when the dire warnings of the harm it would unleash were being shouted from the rooftops? How many people would not now be turning to food banks or battling to access social care if austerity had been stopped in its tracks? 
The political rollercoaster in the US as the new health bill failed to garner the necessary votes to be passed in the house (partly because rightwing hardliners wanted an even harsher version) was stunning. The debacle came against a backdrop of months of anxiety and fear at what would unfold if it were passed and, the closer the vote deadline got, the more it hit home how much ordinary citizens would suffer. Across the country, individuals and groups rose to oppose it, highlighting the potentially devastating consequences for access to reproductive health services and the disproportionate impact on low-income women and children. Disabled campaigners worked tirelessly to draw attention to the particular injustices they would face if the law passed. Last Wednesday, more than 50 disability rights activists were arrested in Washington DC for protesting against it. 
As longtime campaigner Bruce Darling from the disability rights organisation Adapt explained, many people risked being placed in institutions rather than supported in their own homes if proposed cuts of $880bn (£705bn) to Medicaid, the government-funded programme that assists the very poorest and disabled people, went ahead. “Disabled people will die,” Darling told me. 
Leading up to the healthcare vote I talked to people who were terrified about the impact of the new act. One of these was Marta Conner, a charity consultant from Virginia whose seven-year-old daughter, Caroline, has Rett syndrome, a neurological condition that severely limits her control over her body and means she needs round-the-clock care, expensive medication and specialist equipment. Conner was like many of those speaking out. She told me she felt “it was important to have our voices heard” because children like Caroline and millions more disabled and seriously ill people could lose a lifeline.
According to independent analysis from the non-partisan Congressional Budget Office, the AHCA would have seen 24 million people lose health cover in the next decade – and sent insurance premiums for older people rocketing. And, just to rub salt in the wounds, it would have meant a doling out of tax breaks to the rich.
Nevertheless, despite the healthcare reprieve, if you are poor or disabled in the US right now, the fight for rights to support and quality care is far from over. For a start, the healthcare debate isn’t going to disappear: health insurance remains prohibitively expensive for many and even with the advances of Obamacare, it is not a universal system. 
But there are other reasons why complacency is not an option. The attack on the poorest is coming on multiple fronts. Trump’s “blueprint” budget, which was also published this month, is a source of widespread anxiety. It has been overshadowed somewhat by the healthcare issue, but with clear echoes of cuts in Britain, initiatives that help the most vulnerable could be decimated if Trump gets his way. 
In a similarly absurd vein to Tory claims of “compassionate Conservatism” while they slash budgets, preside over soaring levels of child poverty and pummel the NHS, Republicans have had the gall to argue that culling anti-poverty programmes such as after-school nutrition initiatives and Meals on Wheels are acts of compassion towards taxpayers. The question now is, can these radical proposals come crashing down as the healthcare bill did? For the sake of the most vulnerable, let’s hope so.

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 talkpoverty.org

This blog post was first published in Talkpoverty.org. 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. 

Tuesday, March 7, 2017

Meeting on the Hill to share the impact of Medicaid on Caroline's life

I had the opportunity to join Anastasia Somoza and Andraéa LaVant for visits with the following legislators: Sen. Gillibrand, Sen. Kaine, Rep. Brown, Sen. Cardin, and Sen. Van Hollen. Today was a crazy day on the Hill with the unveiling of the House's proposed bill to replace ACA so we ended up meeting with their policy staff instead (though I did run into Sen. Kaine on the street and thanked him for his work!).
They listened to our experiences and told us that our stories will help our legislators make a better case for protecting ACA and Medicaid. Our visits were timely given that the proposed Republican plan would result in changes to Medicaid that would end crucial services to 15 million people with disabilities.
Medicaid allows us to raise a medically fragile child like Caroline in our own home, pay for her life-saving medical care, hold jobs, and have some semblance of a normal life.

Capitol Hill 

Anastasia Somoza

Anastasia Somoza

Andraéa LaVant

Sunday, March 5, 2017

Update on Eyegaze Communication Technology

My little sweetie is featured in PRC's website!  

Eyegaze communication technology has given Caroline a voice, and now she's showing the world to never make assumptions about the intellect of non-verbal people with disabilities.
Caroline has been using her eyegaze communication device since she was two years old. Her biggest motivation to use her "talker" consistently and accurately has been her desire to talk to her friends at school. She now uses the device not only indicate her needs, but to tease, joke around, and to share her thoughts about her surroundings.