Why Medicaid Matters

Yesterday I spent the morning as a member of the Parent Advisory Committee for the ARC of King County sharing a bit of our story with a representative from Congressman Adam Smith's office who was meeting at the ARC office in Seattle to discuss concerns over changes to the Affordable Care Act (ACA). Since Ainsley is now being homeschooled I thought it was a good opportunity for me to bring her along so the representative could see a real life example of who is affected by the proposed changes to the ACA. There were other parents of intellectually disabled children and adults, siblings of adults with ID and one very eloquent well spoken adult with Down Syndrome whose story was especially moving as he is fully aware that the independence he's worked so hard to achieve very well could all be taken away. The lives of every person in that room will be profoundly affected by these changes.

The reality is our family could practically be the "Poster Family" for who is affected by the ACA and changes to Medicaid waivers. Most people would consider us a strong family from the outside but I honestly don't know if we would still be together if it weren't for the support we've received from programs over the last 10 years. It's a fact that having a child with special needs places additional strain on marriages. If you add serious financial strain on top of everything else: normal life, plus the emotional and physical toll of additional caregiving, it's almost a guarantee of failure. Financial ruin was a real threat for thousands of families of children with medically intensive needs (like ours) prior to the ACA when there were lifetime insurance limits that left families like our vulnerable to becoming uninsured when their child's medical bills reached the limit (typically 1 or 2 million dollars depending on the plan). As you know when you need medical care, you need medical care. The cost is what it is. Refusal of medical care on the basis of cost is unethical and parents really cannot choose not to treat their child's medical needs, even if they wanted to.  Prior to the ACA if a child's parents insurance met their lifetime limit the hospitals would still treat the children, parents would be sent to collections and the hospitals would eventually write off the costs, which really means the costs were absorbed by the system, likely in the form of higher costs of treatment to everyone.

Of course insurance limits affect everyone in with a major medical crisis like in the case of getting a rare form of cancer, needing an organ transplant or becoming a burn survivor etc as a few examples.  If not for chance, any one of us could find ourselves in a situation where insurance lifetime maximums are a looming concern (depending on changes to the ACA) at a time when we need it most, but I'm just wanting to share our personal story and what it means to us.

When Ainsley was born Steve and I were already parents to two great kids, a 5 year old girl and 3 year old son who kept us plenty busy. They were so excited for their sibling to be born.We were a very average family.  I'd left work to care for the kids and we were making ends meet on a single income in a 1919 fixer-upper house that took up far too much of our time and money. Like anyone else we expected an average pregnancy and a healthy child. Though the pregnancy was routine when I was 8 months pregnant we found out the baby's head shape was different but the doctors thought it was an isolated case of Craniosynostosis but we would have to wait until the birth to find out. We awaited the birth not knowing if we were having a boy or girl. We had wanted a surprise and we got one. Lots of big ones, actually.

We had no way to know what was in store. The baby turned out to be a she and when she was born she was unable to breathe well. We would later find out it was likely a complication of her primary diagnosis, (Global) Cerebellar Hypoplasia (with some effect to her pons). She was placed on breathing support, and had a tracheostomy placed at 5 weeks old.  She had a complex form of Sagittal Craniosynostosis which required her to have an invasive surgery when she was 3 months old (below), and then another even more invasive surgery again at 9 months old during which they reshaped the entire front of her skull including her eyebrows. She had eye brow and lid surgeries to correct the results to her eyes from prior surgery as well as eyelid ptosis. She needed hip surgeries. It would turn out in all she had 17 surgeries by the time she was 8.

Ainsley in the early years was considered medically intensive. Now I refer to her as Medically Complex, though her care is still intensive it is to a lesser degree. It took me a long time to admit that she likely had a degree of intellectual disability. Like Cerebral Palsy kids with CH aren't always affected intellectually so we just didn't know if Ainsley was or not but as years pass it is clear she isn't going to "catch up" despite starting early intervention therapy at 4 months of age. She still needs a walker to walk, an electronic speaking device to speak. She needs assistance for a lot of things that people can routinely do themselves like dressing, grooming, bathing, seating, communicating. She relied on a g-tube for feeding for years as well as a trach to breathe until she was 7. She still needs CPAP to sleep and sleeps with a pulse-oximeter on and it's not uncommon that it will alarm at night causing disruption to our sleep. She needs a lot of additional help with learning, which is why we are now homeschooling. Despite her early history she is currently very healthy and lives a very happy life full of fun.

Many people with intellectual disabilities (ID) and physical disabilities are on Medicaid waivers. There are also waivers for children with intensive medical needs. Ainsley fits all these categories. Historically both populations were frequently institutionalized. Changes to the system and advances in technology have meant that children can be cared for in their homes with the support of their family and these Medicaid waiver programs. This is often best for the families as well as the individual, is more humane than institutionalization and also happens to be far less expensive to the State.

We were "lucky" enough that Ainsley was sick enough that we were placed on a special waiver for babies that are hospitalized for over 30 days that was designed to keep families from going bankrupt. So for the first year we had Medicaid secondary picking up the costs beyond what our insurance would pay. But after that we started to worry when we saw the stacks of medical statements come in. With the monthly equipment and supplies (really, it was like we ran our own in home NICU), surgeries, and therapies we had no idea what the cost might be. The day that I got a letter in the mail, that I no longer had to worry about reaching our lifetime maximum because of the ACA, was the best day of my life. Prior to that we were getting closer and closer to exhausting our lifetime benefits, which would mean no medical insurance. Afterward I still continued to pay attention to our medical costs for ethical reasons (I caught a HUGE surgery bill error once), but I was no longer paralyzed by the fear that I would be unable to provide care to my child, or lose our home.

When Ainsley was a few years old we were able to get expedited onto a Medicaid Medically Intensive waiver which later was switched to a different waiver for the physically and intellectually disabled when her trach and g-tube were removed. We are fortunate that we have always had good medical insurance so for us the Medicaid is secondary, meaning it only pays for costs that our insurance doesn't pay. Those costs can really add up and cause serious financial hardship.

There is a real emotional toll on the whole family when a child requires this kind of medical care. It can be hard to hold it together and just get normal things done like getting the kids to school or food on the table. There are days that facing the care demands make it hard to even get out of bed. In the first year it was like running our own NICU in our home on top of normal life. Those days have long passed, but it's really not an exaggeration for many families it really is that intensive. As hard as it may be to believe, in some ways we are the "lucky ones".  I've made many friends along the way some of whose children require very intensive care at home: TPN nutrition, PIC lines, ventilators, life-saving round the clock medications, catheterization, seizures and autonomic storms, frequent ER visists and hospitalization when things "cross the line", just to come home and continue to play doctor and nurse. Some have seen their child pass away after years of dedicated care at home. Then there are the ones who have a difficult time in the beginning and then move on to live a "normal" life. They are the ones each of us hope to be. As a parent you do what you have to do for your child not knowing where it will lead. 

Ainsley is a wonderful child who brings a smile to the face of nearly every person she meets. But she is different in some ways that stand out. Everywhere that we go people notice her. Every day. Today, yesterday, last weekend at her cousin's birthday party. People notice she doesn't quite move like other people, and she looks a little different too (Just today a teen boy with ID at the hospital today asked loudly "What happened to her?!"much to the mortification of his mother. I gave her a knowing smile, it was an opportunity show grace.). Ainsley has a generously loving and friendly heart and people can see that too so often after the curious stares they will try to interact with her. Usually it doesn't take too much time for them to figure out that she is non-verbal. You can tell they are confused by her and don't really want to let it go at that. How can you explain the unexplainable? Strangers aren't the only ones who find Ainsley intriguing. I frequently hear from doctors that Ainsley "on paper" doesn't match the real person. Of course not, because people are more than their diagnosis!

In real life Ainsley is a person with a lot to offer who is constantly showing others what it looks like to overcome adversity with a positive attitude. She can do SO MUCH despite being so limited and SHE is able to live at home with her family because the waiver program kept us together when we were most vulnerable. Our story could have easily ended with us losing our home and splitting up and a very different kind of life not just for Ainsley but for our other two kids. Instead Steve made a job industry change, we sold our fixer upper and took a risk on a house that we thought would be great for Ainsley (single level with outdoor space she can access, and a large safe driveway for "home therapy" in her walker). We are just one family helped along our way by the Medicaid waiver programs. For today we are grateful that she is doing so well, and my hope is that continues for a long time. One thing I have learned is that you really never know what the future holds in the care of a medically complex child. Many other families really depend on these services. It is especially for them that I share our story hoping that whatever changes may come they do not come at the expense of children who are medically intensive or with intellectual and physical disabilities.