Teresa's Story: Fighting for Anthony's Right to Live in the Community

My name is Teresa Merlo. I am a single mom in Missouri with my three children: Charla, Anthony, and Alex. We also have two dogs, Oreo and Coco, lots of freshwater fish, and more snails than we can count! (Seriously, if you need some snails, contact me.)

Charla is such a unique, loving, empathetic kid. She’s very into science and history, and is possibly the only 10-year-old I know who will happily sit on the couch and watch a Ken Burns documentary. She’s an athlete in soccer and wrestling, belongs to Girl Scouts, and plays the drums. Her brother Alex is seven and very feisty, independent, and adventurous. He’s a big fan of dinosaurs and cars, draws constantly, and is so sweet; every day he has to tell me “I love you to the end of the universe.” He plays soccer like his sister, along with baseball, and just became a Cub Scout.

Their brother Anthony is eight. He is such a ball of joy: He can turn anyone’s day around in a second, whether they’re a friend or a stranger. He has Down syndrome and significant global delays. People often think he’s much younger than he is because he’s so small; he’s about then size of a two-year-old, and developmentally he is around one. While Anthony is nonverbal, he’s very expressive, and he’s much-loved by his teachers, nurses, therapists, and doctors—basically, everyone who interacts with him.

I knew in utero that Anthony had Down syndrome and might develop related health issues. I remember a doctor trying to gently tell me that Anthony might have a lot of medical problems—he’d “hit the lottery,” as the doctor put it—he had a son with Down syndrome and wanted to prepare me.

Anthony came out not breathing, which was really scary. I’m glad the NICU staff were there to step in immediately. He needed a ventilator initially and spent a month in the NICU. Like other kids with Down syndrome, he had some complications with his heart and his lower digestive tract. He needed a feeding tube. They discovered that he has hypogammaglobulinemia; his immune system can’t produce antibodies and he’s incredibly vulnerable to infections. He also has hearing loss.

When we switched to private insurance, it was a nightmare. There was so much they didn’t cover and we had to fight for every single thing.

He spent most of his first year in the hospital: He had pulmonary hypertension, where his heart was working too hard and it affects the arteries that carry blood to the lungs. Anthony had a series of really scary respiratory crises, he spent some time on ECMO, and he ultimately needed a tracheostomy to breathe safely. I am so thankful to the hospital and the team there, who were so supportive and really helped me become his advocate. I will never forget one of the intensivists, Ahmed, telling me that Anthony would make it, he just needed time.

When Anthony was in the NICU as a baby, he had Medicaid coverage. When we switched to private insurance, it was a nightmare. There was so much they didn’t cover and we had to fight for every single thing. I had to quit working and we were really struggling financially. Anthony was so medically complex, but we didn’t qualify for Medicaid. I connected with another mom at the hospital who was having the same problem. I was told that my options were to move to Illinois, where there were more options for kids like Anthony, divorce my husband so I could qualify, or give Anthony up into medical foster care. I couldn’t believe it. I thought the state had processes to take care of families like mine. I thought “if only people knew this was going on, they would be horrified.”

We heard something about a waiver program that we could use to get our kids on Medicaid, but no one at the hospital had any information. I finally tracked down a case manager at social services who helped me with the application process, but I ended up on the waitlist, which could be more than two years long. We couldn’t wait. I begged my state representative and senator to help, but didn’t get anywhere. Finally I got brave, and maybe a little desperate, and I emailed my U.S. Senator, Claire McGaskill. Within days, we got the news that we’d been accepted. Getting on to the waiver meant that he was able to get the nursing care he needs to stay home, that he gets coverage for all the equipment and therapy and medical supplies that he needs, that he can stay safely here with us.

That’s when I connected with Little Lobbyists: I saw Elena speaking at a rally and it got me fired up. I reached out, and before I knew it was in front of the crowd at a Protect Our Care event, telling our family’s story. I talked about how before the Affordable Care Act, he would have blown through his lifetime cap before he even left the hospital. He had $5.2 million in medical bills in his first year of life. The waiver saved his life, and it saved our family.

I’m really scared now with all the changes to Medicaid coming through. The waiver he’s on is considered an optional program, so it could just disappear. The program that pays for our whole family’s health insurance premiums so we can keep private insurance as our primary would also probably go away. Anthony has 12 specialists and he’s got a medical appointment nearly every week. As a single mom, I don’t have much of a safety net and I’m so worried about interruptions to his care.

So many people don’t know about families like ours or they think we must be taken care of. They don’t know about the waitlist, the daily stress. I talk to people and they are just appalled. I’m so worried about all my friends and their medically complex kids right now. These programs benefit everyone, and we each have our own unique stories. I just want people to hear our stories, to listen, to understand how hard we have to fight for our kids, and how much they mean to us.