Friday, August 11, 2017

Do I wish Caroline were a typical child?

Do I wish Caroline were a typical child?

This is a question I've been asking myself since she was diagnosed in 2011. The answer is yes ... and no. You're probably wondering how I could possibly include a "no" in my answer.

At an appointment today, I was describing Caroline's condition to a medical assistant, and her reaction reminded me that yes, Rett Syndrome is indeed an awful disorder, but no, there's no need to apologize and be sad for us. She's still alive and looking right at you, wondering why you suddenly look so sad. I get it. I wish for Caroline's sake that it didn't happen, but I get it. I know it comes from a good place. I usually try to lighten the situation with humor, but I realize that our sense of humor and way of coping doesn't always translate well outside our household. Me joking to Caroline "let's try not to throw up or have a seizure during the exam" resulted in a smirk and an eye roll from Caroline but an even more uncomfortable and sad look from the lady.

So back to my question. Do I wish Caroline were a typical little girl? I'll start by explaining the "yes" part. Rett Syndrome is horrible, plain and simple. I wish, multiple times a day, that I could take away her seizures, her inability to breathe properly, her discomfort, her pain, her frustration, and everything that Rett has stolen from her. I wish she could do regular things that 7-year-olds do -- hang out with her friends on her own, read books by herself, explore her surroundings, do silly things, share her thoughts and feelings with others, ask us questions, and so many other things I took for granted when I was her age. I would do anything to make her life easier, and I am continuously in awe of her patience, bravery, and strength. We try our best to give her -- and ourselves -- some semblance of a normal life. But the truth is that Caroline has been dealt a very difficult and challenging life, and that pisses me off. At times, I am both angry and devastated that instead of worrying about raising Caroline to be a strong independent woman, I'm having to worry about what will happen if she dies young...or if she outlives us (very unlikely). Both scenarios cause me to stay up at night. I know life isn't fair, but I'm going to say this anyway. It's unfair that just staying alive and fairly stable isn't something that she can do without so much intervention. I hate that Mike and I need to have conversations about all the things we need to do to make sure she suffers less and lives a little longer. Our biggest fear is losing her. Even though we have accepted that will eventually happen, the pain and loss is still unimaginable to us.

Now to the part that is hard for me to explain....why I don't wish she were a typical kid. This is my selfish and brutally honest answer. In short, I love and (or as my mom will describe it) worship the Caroline I know. She is perfect to me, and I love her for who she is. And even though she's first and foremost just Caroline, Rett Syndrome has shaped and continues to shape everything about her. This will probably sound like a terrible thing to say out loud, but I don't find myself wishing Caroline would suddenly turn into a typical version of herself -- a parallel version of herself who talks, walks, and can do things on her own. I don't know and love that little girl so I don't wish for her. It doesn't make sense to me. People often assume that I want what they have. In fact, I've had a number of friends (even close ones) distance themselves from me because they feel bad for me. They feel guilty because they have their healthy kid and I have Caroline. My catty side causes my eyes to roll a few times to the back of my head at this. I can understand their perspective. I used to resent it, but when I put my hypocrisy and defensiveness aside for a minute, I realize that I kinda feel the same towards parents with typical kids. I fear some aspects of having a typical child as much as they fear the challenges often associated with having a medically fragile child with severe disabilities. When Caroline started losing her skills 6 years ago, I was desperately trying to hold bring them back somehow. I looked at other kids and wondered what it would be like to have a conversation with my baby. But months went by and my memory sucks. The only reality I know is the one in which I am lucky to have a child who looks exactly like Mike with a hint of my Korean side, and who is bright and sassy and funny, but whose time on this earth is more limited than others and who happens to need more care and assistance than most. I love the family we have become because of Caroline's condition. I like the person I've become because of Caroline. I just wish that these things had not come at such a high price to her.

Last, do I wish for a cure? I would give anything to alleviate Caroline's Rett symptoms

Thursday, July 6, 2017

I told Caroline's story at a protest outside Trump's Hotel while he held a $35,000-$100,000/plate fundraiser inside

Thank you Public Citizen, Resist Here, Americans for Tax Fairness, and Working Families Party for the opportunity to share my daughter Caroline's story.

I am feeling deeply thankful for the opportunities I've been given to tell our Medicaid story and add my family's voice to the health debate. I still find public speaking excruciatingly challenging -- it's not something that comes naturally to me. I've also had to set aside my family's privacy. But I recognize my own privilege and the flexibility it gives me to be able to voice the concerns of so many families like mine.

The protest received a a lot of media coverage. Below is a link to a news clip with a very (very!) short clip of my interview.

You can view video of the protest below. My message to the Republican Senators supporting this bill starts at the 21:30 mark.

My message to the Republican Senators supporting Trumpcare:

You are putting my daughter's life at risk. You are taking away the lifeline of so many children with disabilities and/or chronic illnesses by cutting $800 billion from Medicaid to finance tax cuts for corporations and billionaires. Do you even understand what's in the bill? This is a matter of life and death for millions of Americans across the country.

Do the right thing. Do NOT pass Trumpcare. America will be watching you.

Sharing Caroline's story with Whip Steny Hoyer on

On June 23rd, I was given the opportunity to share our Medicaid story with Whip Hoyer. We are deeply grateful to him and so many other champions in Congress for fighting so hard to protect children like Caroline -- who have with disabilities and chronic health issues and depend on Medicaid to survive and be part of society. 

Our conversation was filmed as part of a video series on featuring members of Congress interviewing Americans about the impact TrumpCare would have on their lives.

These stories are shared by millions of Americans across the country. Let's continue to call our Senators every day and tell them to vote NO on the Senate health bill/TrumpCare. We are not asking for much here. People need their healthcare coverage to just live and continue to be part of society.

Video of my conversation with Whip Hoyer

The video below includes clips from a few stories including ours (and some cute pics of Caroline!). You can hear my message to the Administration and Republican members of Congress at the end of the video.

Tuesday, June 27, 2017

Press Conference Outside Children's National Hospital

Thank you so much, Leader Pelosi, Rep. Jayapal, Rep. Yarmuth, Rep Norton, Rep. Raskin, and Rep. Sarbanes for showing me genuine compassion and for fighting for Caroline. And thank you to the Arc of the United States for inviting to share the importance of Medicaid for children like Caroline. 
Link to the video of the speeches:

Thursday, June 22, 2017

Senator Mark Warner is fighting for Caroline and others like her

Thank you, Senator Mark Warner and the Arc of Virginia, for giving me the opportunity to share Caroline's story and talk about the crucial role Medicaid had played in her/our lives.  
Please call your Senators today. Everybody stands to lose with the terrible health care bill the Senate is voting on next week.

Wednesday, May 31, 2017

Kicking off the #HandsOff Campaign on Capitol Hill -- May 24, 2017

I had the honor join advocates and members of Congress to speak out against Trump's budget proposal. What's at stake? Pretty much everything that American families care about.

Thank you Congresswoman Lee, Whip Hoyer, Leader Pelosi, Congressman Yarmuth, and the Center for American Progress for the opportunity to tell our story today.

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

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. 

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. 

Friday, February 24, 2017

Annual Developmental Disabilities Advocacy Day in Richmond with the Arc of Virginia

On January 31st, I joined the Arc of Northern Virginia on a trip to Richmond VA for a number of meetings with various state legislators about the importance of Medicaid Waivers and why they should "end the wait" for long waiting lists. I got to spend time with amazing people -- adults and children with developmental disabilities and parents like me.
The meetings went really well! I told the legislators about Caroline but the majority of them remembered me and her story from my testimony to the Virginia General Assembly Finance Committee members at the public hearing on the Governor's proposed budget in early January. The folks we met with seemed super supportive of our community.
We ended with a big rally in front of the Virginia State Capitol where some of us, the lieutenant Governor, and a number of legislators gave speeches. I gave a speech too. 

Virginia State Capitol

Picture provided by the Arc of Northern Virginia

Picture provided by the Arc of Northern Virginia

Caroline's story was featured in the Richmond Times-Dispatch. Please click here for link. 

News Article:
Disability groups protest 11,000-person waiting list for services in Va.
By Sarah Kleiner Richmond Times-Dispatch
Jan 31, 2017
With her 14-year-old son Danté Herrera bundled up in his wheelchair next to her, Marlo Dean asked a couple of hundred people to put their fists in the air as they protested an 11,000-person waiting list for disability services. 
“What do we do?” Dean asked the crowd gathered outside the Virginia Capitol in the cold morning air on Tuesday. 
“We fight,” they said in reply. 
“We fight to have what?” Dean said to cheers. “A life like yours.” 
Dean was among a long line of parents, advocates and lawmakers who implored the crowd to keep fighting for services for people with disabilities. Herrera, who has Batten disease, a rare and fatal brain disease, has been on the waiting list since he was 3 years old, Dean said. 
The government “should be helping people that have problems, that have challenges, that have difficulties,” said Del. Timothy D. Hugo, R-Fairfax. “We’re all God’s children and government has an obligation and a necessity to step up and try to help everybody, to make sure everybody can live life to the best of their capabilities.” 
Virginia has for far too long relied on institutionalized care for people with disabilities, said Jamie Liban, executive director of the Arc of Virginia, an advocacy organization. 
Even after the federal government required the state to provide care in the least restrictive settings possible — at home, if possible, rather than in institutions — the waiting list for services has been growing. Advocates have urged the state to spend more money on disability waivers, or slots, which provide a variety of services to families in need, such as respite care or home modifications. 
Caroline Conner, 7, has been waiting for a waiver slot to get adaptations in her home, additional nursing, a case manager and extra therapy to keep her muscles from stiffening in certain positions, her mother Marta Conner told the crowd. Caroline has Rett Syndrome, a brain disorder that makes it impossible for her to walk, talk, sit without assistance or use her hands. 
Marta Conner said her daughter wears diapers and her food is pureed. She had 85 seizures last year. 
Caroline has a lower level waiver that pays for respiratory equipment, but a more intensive waiver would “improve the length and quality of Caroline’s life and also allow us to continue to care for her in our home,” Marta Conner said.
Sen. Barbara A. Favola, D-Arlington, said it’s “shameful” that the waiting list is so long, and she vowed to reduce it.
Democratic Lt. Gov. Ralph S. Northam, a pediatric neurologist in Norfolk, said 70 percent of the children he cares for have disabilities. He said they should have the same educational opportunities as other students in school, and they should be educated in the least restrictive environments possible.
Adults with disabilities should have the same opportunities for employment and access to affordable housing, he said, as he put in a plug for his run for governor. 
“I can tell you as the next governor of the commonwealth of Virginia, I’m going to stand up for all of you with disabilities,” Northam said. “I will be your friend, and I hope you will be my friend.”

My testimony at the public hearing for the Virginia General Assembly

(I'm late posting this!)

On January 7th, I spoke to the Virginia General Assembly Finance Committee members at the public hearing on the Governor's proposed Budget. I shared Caroline's story to help make the case for Medicaid Waivers which are vital to individuals and families like ours.

I had reached out to the Arc of Northern VA (an advocacy organization for people with disabilities) and they arranged for me to give my testimony on behalf of Caroline. I could tell that the delegation was moved by our story, and I really hope that the upcoming state budget includes sustainable funding to continue these services for all Virginia families who need them.

My speech 
Good morning. I am Marta Conner and I’m here speaking on behalf of my daughter, Caroline. She would love to be here speaking for herself, but sometimes large crowds like this overwhelm her and cause seizures. So today, I’ll share some thoughts on her behalf.
Hi, my name is Caroline! I am seven years old, and I have a neurological disorder called Rett Syndrome which keeps my body from doing what I tell it to. I cannot walk, talk, or use my hands. I still wear diapers, and can only eat pureed foods and drink out of baby bottles. Still, I am smart and I understand everything going on around me. I use my eyes and make sounds to communicate. I also use a cool computer that tracks my eyes and talks for me! I love books about Dinosaurs, and my favorite movies are Tangled and Beauty and the Beast.
I was born healthy and strong, and I hit most of my milestones during my first year. Then, around my first birthday, I stopped keeping up with my friends who were already walking and exploring the world around them. Soon, my mommy noticed I was dropping my toys and couldn’t say my words anymore
At 17 months, I was diagnosed with Rett Syndrome. The day of my diagnosis was so sad for my family, but my parents promised me that we would live a happy and full life no matter what. Rett Syndrome can make that hard. I take four different medications to control my seizures, but I still get them. Last year, I had 98 seizures over 12 months. I have tummy issues and I take medication so that I don’t vomit all the time. I also can’t sleep without medication because my body doesn’t know how to relax.
As you can imagine, caring for my personal and medical needs is a full-time job, but thanks the EDCD Medicaid waiver, I have nursing care to help my mommy and daddy for a few hours each day on weekdays (and sometimes on weekends). This allows them to work and take care of our family needs.
I’m currently on a long waiting list for a Developmental Disabilities waiver, which will help me get additional services that are important to my health and the quality of my life, like a case manager, more nursing, and the opportunity to adapt our house so I can get inside safely. It will also help provide therapies to keep my stiff body from permanently getting stuck in certain positions.
There are more than 11,000 people like me that are also on the waiting list and need your help. About 4,000 of us use EDCD Waivers and the cost to convert our EDCD Waivers to a Developmental Disability Waiver is pretty low and a great way to get ahead of the waiting list! Please support converting our EDCD Waivers to Disability Waivers. Also, I hope you’ll reject the Governor’s proposal to reduce waiting list funding by $10 million. Instead, keep that money in the Waiver system to provide 800 additional Family and Individual Support Waivers and 250 Community Living Waivers for individuals and families on the DD Waiver waiting list.
You have the power to improve or even save our lives. Please fund the waiting list for Developmental Disabilities Waivers! END THE WAIT, start a life! Thank you.

Caroline's Medicaid waiver story

Caroline's Medicaid waiver is on the Arc Of Northern VA's website. Please click here to read it.

Caroline is one of 11,000 people currently on a long waiting list for a Developmental Disabilities waiver, which will help her get additional services that are important to her health and the quality of her life, like a case manager, more nursing, and the opportunity to adapt our house so she can get inside safely. It will also help provide therapies to keep her stiff body from permanently getting stuck in certain positions.


Thursday, January 26, 2017

Medicaid Fulfills Crucial Role for Children with Special Health Care Needs Like My Daughter

This blog post was first published in Georgetown University Health Policy Institute Center for Children and Families's blog "Say Ahhh!" 

My daughter Caroline is alive because of Medicaid. The medications, the equipment and the nursing care that have helped us manage her severe disability would not be possible without the federal program’s support. Now, with Congress and the White House considering cuts and restructuring for Medicaid, it’s important to consider children like Caroline.

We welcomed our little girl into the world seven years ago. We were in love the second we met her. She was sweet, bright, and observant from the very beginning.

Caroline’s early infancy was easy and uneventful, and she met most of the first year milestones on time. However, during a routine check-up around 10 months, Caroline’s pediatrician worried that she still wasn’t crawling and urged us to contact Early Intervention services.

Her evaluation determined that she had low muscle tone and needed physical therapy, and services began soon after her first birthday. Within a few months, it was clear that Caroline had the motivation to crawl and explore the world around her, but the coordination necessary to move forward was missing.

At 15 months, we noticed that Caroline was performing a strange repetitive movement with her hands. The movements were subtle at first, but my heart sank the first time I noticed them. This involuntary behavior was a sign that we were dealing with more than just gross motor skills delays. We immediately took Caroline to see her pediatrician, who expressed concerns about the possibility of Rett Syndrome.

We were stunned when we first read about the progression of the disorder. We were referred to a neurologist and a geneticist in the hopes that we could rule it out.  However, the hand movements soon became constant and Caroline began to lose the ability to use her hands to play with her toys, feed herself, and hug us. Around this time, we noticed that she was losing her words and struggling to vocalize sounds. She was verbal early on, and communication had always been her strength, which made her regression all the more noticeable. Caroline also developed problems with chewing and swallowing.

We experienced dark days filled with grief and anxiety as we watched Caroline struggle with the loss of these skills. At 17 months, doctors told us she had Rett Syndrome, a heart-breaking diagnosis that finally explained her inability to walk, talk, or use her hands. We were devastated.

Rett Syndrome prevents Caroline from expressing herself and moving the way she wants to, making her completely dependent on others for every aspect of her life. At age 7, she still wears diapers and can only eat pureed foods and drink out of baby bottles. The disorder, however, doesn’t affect Caroline’s intelligence or her ability to love.

She is very observant and engaged, and she understands everything we say to her. She uses her eyes and makes sounds to communicate, and she is also learning to tell us what she wants with a computer that tracks her eye movements. Caroline is not defined by her missed milestones, but by her strength and sweet spirit. She loves spending time with her family and friends. She is daddy’s little girl. She loves books about dinosaurs, and her favorite movies are Tangled and Beauty and the Beast. In a lot of ways, she’s just like any other girl her age.

But unlike typical girls, Caroline’s medical needs continue to worsen and grow more complex with time. Even with four medications to control her seizures, they keep coming. Caroline had 85 seizures last year alone. She also needs medication to keep her from vomiting and medication to let her know when it’s time to sleep. Caroline’s muscles and tendons are often very tight so she has to take yet another medication and wear braces on her ankles and hands to keep contractures from developing. Caroline’s condition also makes her susceptible to pneumonia and respiratory failure.

Caroline has been in the Pediatric Intensive Care Unit (PICU) five times since 2014, sometimes for several weeks straight. One visit in 2015 was particularly terrifying and heart wrenching because we weren’t sure we would get to bring her home again. Luckily, her great team of doctors worked hard to save her life and figure out a plan going forward. To reduce the number of expensive hospitalizations and also prolong the quality and length of her life, Caroline’s doctors put her on a daily regimen of lung therapies at home.
Several times a day, she receives a round of various nebulizer treatments, followed by therapies to keep her airways clear and help her cough. These lung therapies are administered through two different types of hospital-grade medical equipment. At night, Caroline also receives additional oxygen support through a BiPap respiratory machine that helps her inhale and exhale properly.

Caroline is alive because of Medicaid. Medicaid has also allowed my husband and me to care for her in our home and watch her grow into the beautiful, sassy, and funny girl she’s becoming.

We found out about Virginia Medicaid’s Elderly and Disabled Consumer Directed (EDCD) waiver six months after Caroline’s diagnosis when our circumstances started taking a toll on our mental and physical health. We were heartbroken, sleep deprived, and extremely stressed. My husband and I were working full-time while doing our best to ensure that Caroline saw all of her doctors and therapists each month. We hadn’t yet found a solution to address Caroline’s inability to sleep so we were functioning on just a handful of hours of sleep each night. We also spent every free moment educating ourselves on how to best care for our daughter and navigate this new uncertain path. When I shared our concerns with Caroline’s case manager from our local Early Intervention services, she told us about the EDCD waiver, which would provide us with some hours of personal assistance and respite care each month. We were initially reluctant to enroll in this benefit, but we recognized that the pace and complexity of our lives was not sustainable, and we desperately needed help.

The EDCD Medicaid waiver allows elderly and disabled people to live in their homes instead of an institution. Caroline receives nursing care for a few hours each day on weekdays (and sometimes on weekends), allowing my husband and me to work and take care of our family needs. We never imagined that these nursing services would one day save Caroline’s life.

In 2014, during one of the monthly required visits as part of the program, the agency’s head nurse took Caroline’s vitals as usual and noticed something that alarmed her. Caroline, asleep during this routine check-up, wasn’t taking enough breaths per minute. The nurse instructed us to get prescription for a Pulse Ox machine and see a sleep specialist as soon as possible. These two actions changed the course of our lives. Caroline’s sleep specialist and pulmonologist ran tests that revealed she had severe sleep apnea. Apparently, Caroline often stopped breathing throughout the night, and she wasn’t fully inhaling and exhaling which caused her system to retain higher than normal levels of carbon dioxide.

A few months later, the Pulse Ox machine’s alarm suddenly went off after Caroline had been asleep for a while. We ran to her room and noticed that her breathing was labored and her oxygen saturation was dipping. During the day, we had observed symptoms of what appeared to be a mild cold and never imagined that she was rapidly developing pneumonia. We rushed her to the hospital where she was immediately admitted to the PICU and ended up staying for 17 days.

The EDCD waiver also helps cover the rental of the lung therapy machines and other medicines that are not covered by our private insurance. The rental of Caroline’s two lung therapy machines alone amounts to several thousand dollars a month. These machines not only keep Caroline out of the hospital but also allow her to do something most of us take for granted – to breathe normally…and stay alive.

The uncertainty about Medicaid’s future has compelled me to speak out on her behalf and on behalf of the millions of children like her who rely upon a strong Medicaid program.
Since its creation more than 50 years ago, Medicaid has been a successful, cost-effective federal-state partnership. Several proposals have recently surfaced that would impose an arbitrary cap on the federal Medicaid contribution and shift more costs to states. These proposals would severely hamper state leaders’ ability to respond to the fluctuating needs of their residents and pose a real threat to families who rely on Medicaid now or may need it in the future.

Our family story is not unique. Babies are born every day to parents who never expected to need Medicaid to help them meet their children’s needs.

Nobody knows what the future holds. None of us knows whether we or one of our loved ones will face insurmountable medical costs due to an accident, illness or the birth of a child with special health care needs. The decisions our leaders make today about the future of Medicaid will have a dramatic impact on the future of our children and families. Strengthening Medicaid would build a brighter future for our children, but proposals to weaken the program through arbitrary caps would leave families wondering whether or not Medicaid will be there for them in their time of need.