down syndrome

ACA Repeal Affects Families

There has been a lot of talk about repealing the Affordable Care Act (ACA) recently. There are several things that concern me about this with regard to how it will affect those living with Down syndrome (DS). The first is the pre-existing condition statute. The current law forbids health insurance companies from denying coverage to anyone, regardless of health history. It also forbids companies from charging higher premiums to enrollees just because they have a pre-existing condition. Even if your child has no other health issues, most insurance companies consider DS itself a pre-existing condition. Before the ACA was implemented people with DS and their families were essentially locked into an insurance company. They were hesitant to change insurance providers or to leave their jobs because of the fear that they would no longer qualify for insurance, or that if they did they would be charged prohibitive premiums. People also lived in constant fear that their employer would change insurance providers or that they would be laid off. People often stayed in jobs that were unfulfilling or declined better positions with more opportunities because they were afraid that they wouldn’t qualify for insurance with their new employer. This placed an undue and unfair burden on families who had children with DS.

The other concern I have about the repeal of the ACA is that we will lose the ban on lifetime limits. Before the ACA, insurance companies could set a dollar amount for how much they would pay to cover medical expenses for any given individual. Essentially, they could say, “sorry, you’ve reached your lifetime limit and we will no longer pay for your medical expenses”. These are the kinds of events that bankrupted families before we had healthcare reform. You can google this topic and read hundreds of stories about young children who exhausted their lifetime limits. The LA Times published a story in 2008 about a little girl who had what her parents thought was an ear infection. It turned out she had a virus that damaged her heart. She went over her lifetime limit within three weeks of the original diagnosis. She was 20 months old. There are hundreds of stories of children who met their lifetime limit before they even left the NICU. This meant that these children were cut loose from their insurance companies, who never had to spend another dollar treating them. Imagine that your child is in the NICU receiving life-saving treatment and your insurance company calls to tell you that you are fast approaching your lifetime limit. What are your options? You have to choose between allowing your fragile baby to get the care he or she needs and being bankrupted by medical bills. If you reach your lifetime limit you could seek coverage from other insurance companies but, of course, your child has a pre-existing condition so no one is required to provide coverage to your child and if they do provide coverage, they can charge astronomical rates. None of the plans set forth to replace the ACA have yet addressed the topic of lifetime limits but if the ACA is repealed those prohibitions will go with it. 

Before the ACA, which banned lifetime limits and discrimination for pre-existing conditions the anecdotal stories of families being forced to decide between treating their child’s cancer, heart condition, or other medical issue or to pay their mortgage or other bills were heartbreaking. If you know any families who have children with medically complex needs you know that they already have so many challenges. I have a good friend with a 10-month-old daughter who is absolutely the joy of her family. She has been inpatient for over 100 days of her young life. She’s had two heart surgeries, including one to implant a pacemaker. Her parents already have to juggle full-time jobs, managing their daughter’s complex medical issues, and visiting her in the hospital against meeting the needs of their older daughter and the demands of daily living. Thankfully, they live close to the hospital so they don’t have the added financial strain of paying for hotel rooms, which can add up to several hundred dollars a week, but they still pay out of pocket for parking, gas, and meals. Having your child in the ICU is bad enough and the additional financial resources required are numerous, but before the ACA they had to wonder “is this the hospitalization that will put us over the limit?” and if it does “how will we ever be able to afford another insurance?” At least with our current insurance plans, we take those two huge worries away from them so they can focus on helping get their daughter home, where she belongs.

For a society that purports to believe in family values and family first, a compassionate health insurance bill is the only option that could possibly align with those values. 

For more information about how the repeal of the ACA might affect those living with DS, check out this fact sheet from the NDSS.

Celebrating WDSD

Dozens of people participated by wearing their mismatched socks. 

Dozens of people participated by wearing their mismatched socks. 

March 21st was World Down Syndrome Day. This time last year we were still sitting with Julia Grace's diagnosis when we heard about the day that celebrates those living with DS by wearing crazy, mismatched socks. I've always loved crazy socks and have maybe only one pair of "normal" socks in my entire sock drawer so this seemed like a "holiday" tailor made for me. We decided to announce the diagnosis on Facebook and asked our friends and family to show their support for the baby we were expecting. We were truly overwhelmed by the number and diversity of people who participated and posted photos of their feet to our Facebook wall. It was the first moment where I truly understood the power of community and realized that this child would be loved and accepted no matter her differences.

      This year was no different  and we had dozens of people participate in honor of Julia Grace and others living with Down syndrome. It is always so awesome to see the community of families with Down syndrome planning and preparing by creating educational materials for their children's classroom, making blue and yellow treats for coworkers, inspiring others to kindness in the name of their loved one with DS, etc. But, perhaps it's even more inspiring to see how others respond by being open, accepting, and loving. People with Down syndrome have contributed in so many meaningful ways to their families, schools, and workplaces that it is an honor to celebrate them in this way. Can't wait to see what next year brings!

Why be normal?

In January of this year, I was driving home after a long and overwhelming day at Boston Children’s hospital when I heard Aimee Mullins on “The Moth” podcast. She is a model, athlete, and activist as well as a double amputee. Listening to her story I was inspired by everything she had accomplished not only in spite of being a double amputee but in some ways because of it. I pulled out my phone and recorded a short spoken word piece about reconsidering my approach to raising my daughter with Down syndrome. I didn’t know what I was going to do with it but I knew I wanted to share it. A few weeks later we were visiting Tony and Julia Bacon, close family friends and an amazingly creative couple and I played the sound recording for them. Tony is an award-winning filmmaker and was inspired by the piece and thought that the sentiment might resonate with parents of all kinds. I could see that he was already envisioning my words as a short movie. Several weeks of collaboration later and we are proud to share with you this video that we hope inspires you to reimagine life with Down syndrome. We are so happy to have you on this journey with us.  For more information sign up for our newsletter at www.juliasway.com or find us on facebook @ https://www.facebook.com/juliasway2016/.

The Last Time We Ate Indian Food

Last night Julia Grace was up a lot, like usual. She has reflux that seems to be worse at night, probably because she metabolizes the medication too quickly. We are working to get it better controlled but what we tried overnight, suggested by our doctor, didn't work. Yet still, I woke up grateful. Partially because her dad did let me sleep through most of the wake ups, but mostly because a year ago today was "the last time we ate Indian food". That's how my husband and I talk about the day a year ago when we found out that she likely had a genetic condition "inconsistent with life". When you hear something like that, especially perhaps in relation to a baby you tried to bring into this world for years, your vision gets very, very narrow. "Did I do something to make this happen?" was the question that I didn't even consciously form before it was out of my mouth. My midwife assured me I didn't.

Just an hour before I sat in that room, feeling faint and dizzy with my husband's hand on my back we sat in a nearby Indian restaurant enjoying a meal and ogling the ultrasound picture of our beloved baby. The ultrasound tech confirmed what I had known since long before we even became pregnant -- we were expecting a baby girl. I mentioned to my husband that the ultrasound technicians had behaved a little oddly but he thought I was imagining things. On the walk to the restaurant the receptionist at my midwife's office called to ensure that we were coming to our appointment, which was scheduled an hour or so after the ultrasound. I hung up the phone and said "That's weird. Why wouldn't I come to the appointment?" I had always had a sense that I'd have "different" kind of child so I was certain to ask the woman performing the ultrasound if the baby's nuchal fold was normal (a thickened nuchal fold can be a sign of Down syndrome). She assured me it was normal. Little did I know that piece of information would be one of my biggest sources of worry between the time we found out "something is wrong" until the time we found out she had Down syndrome. I obsessed about it. We knew that we could gladly manage a child with Down syndrome but these other things that the midwife talked about, the ones that were "inconsistent with life," those things broke me in my deepest places. It couldn't be Down syndrome because of the normal nuchal fold and several other characteristics that she had that were not typical of a child with DS. So what was it? Sometimes I felt like that meal, "the last time we ate Indian food" was the last joyful meal we had. The intervening weeks and months were exhausting with complications, fear, and sadness. Through it all even though my head was deeply engaged in fear my heart knew that my daughter was meant to be a loving, living, breathing child. I had visions of her in my minds eye: running around our yard, playing with a friend's little boy; snippets that would come to me randomly. That time was dark, I remember only a tunnel vision and a frantic need to be as close to my husband as humanely possible. There were so many tears. I would tell Ed that I was going to shower and I would sit and sob as the water washed over me. I would wake up in the middle of the night, crying silently. I cried at work and in the car; at lunch with friends; and on the phone. I cried for days, it felt like.

Today, exactly a year later, Julia Grace and Ed and I had a lazy morning together as a family and when we finally got out of bed he fed her and got her dressed and she and I made our way to mom & baby yoga. Tonight we sat together on the couch, as we do each evening, and we made faces at each other and laughed hysterically and then I held her and sobbed again with gratitude and joy.