Health Kids

I Worry About Changing the Affordable Care Act – And This is Why

I Worry About Changing the ACA, And This is Why www.herviewfromhome.com
Written by Alethea Mshar

Eleven years ago we had our first, typical daughter who was 6, our son with Down syndrome who was 3, and had taken permanent guardianship of our niece who was 15 after her mother died, and carried out all parenting responsibilities for her.  Our plate was plenty full, but I wanted one more child.  After many long discussions, my husband and I decided to pursue adoption.  We had a homestudy from fostering our niece, and we specifically wanted to adopt a second child with Down syndrome.

Many thought we were going overboard, but we plunged ahead anyway.  Five months later we brought our son Benjamin home.

When you adopt you get a huge list of medical situations which you can check with “yes”, “no” or “maybe”.  Knowing that many children with Down syndrome are born with additional health issues, we were open to a fair number of them, but when Ben’s case was presented to us, he was declared perfectly healthy.

He had been born a bit early, and was slow to learn to eat.  He had failed his hearing screenings and struggled with constipation, but all of these things were well within normal parameters, especially for a child with Down syndrome.  We knew we had to get Ben to the pediatrician and get his hearing tests redone, but considered it no big deal.

After we brought Ben home to 3 older siblings and 2 dogs, we realized immediately that he never startled.  We made getting his hearing evaluated a top priority, and got him in right away because we already had an Ear Nose and Throat Specialist for our other kids.

Ben did fail the hearing assessments, and went on to get ear tubes and a sedated hearing test.  The tubes helped, but Ben was significantly hearing impaired.

As time went on, Ben’s thyroid failed in his first year of life, and he was hospitalized extensively for RSV.  His constipation got worse until at the age of 15 months, weighing barely 15 pounds, he was diagnosed with Hirschsprung’s disease.

After surgery to correct it, Ben’s constipation got much better, but he developed another disease called Cyclical Vomiting Syndrome (CVS).  Once we finally got that managed, Ben was two years old, and had spent his first two years sick.  With his improved health, Ben started growing and developing in leaps and bounds.  He enjoyed great health for a couple of years before becoming sick again.  We initially thought his CVS had returned, but after a week in the hospital, a few doctor’s appointments, and another emergency room visit, Ben was diagnosed with Acute Lymphoblastic Leukemia (ALL).  ALL meant over 3 years of treatment, and landed Ben in the hospital many times.  By the time all was said and done, his bladder no longer functioned properly, he had lost about 20 IQ points, and our dreams of a new normal after treatment were altered.

Since then Ben has had a few more major surgeries, been diagnosed with autism, and sees a psychiatrist for mental illness, and is on his fifth hearing aid.

We had no idea 11 years ago that our dreams of adding a second child with special needs would mean this much medical complexity, but as his parents, we have done everything in our power to provide Ben with all that he needs, and a life that is as normal and happy as possible.

Now, with a hefty list of pre-existing conditions, as Ben grows older, keeping him insured is crucial.  Ben still has 10 specialists that follow his care.  As he grows older, he will age out of our insurance, and rely for the rest of his life on Medicaid and Medicare for his medical needs, in other words, the Affordable Care Act or Obamacare.

This week, the U.S. Senate has voted to take away 6 important health benefits that have been part of the ACA, 4 of the 6, if eliminated, would have a drastic effect on Ben’s present and future health care.

I, and many other families in similar shoes, and deeply concerned.

Because of Ben’s developmental and medical issues, my ability to work is severely limited, and we rely almost completely on my husband’s income as a police officer.  Even with excellent coverage and secondary Medicaid for Ben, our medical bills and mileage far exceed our hefty flexible spending account, and we incurr hundreds of dollars a month in medical expenses. Without Ben’s secondary Medicaid based Children’s Special Healthcare (CHIP), the additional copays and deductibles we would face would add up well into the thousands or even ten thousands a year.

Stay with me here, this is getting long, but this is where the rubber meets the road.

When choosing to have and then adopt our boys with Down syndrome, we took a leap of faith, and the safety net of insurance and Medicaid caught us, keeping us from financial ruin.  If that safety net is eliminated will people have more second thoughts about bringing their children with special needs into the world?  Will people even consider adopting children with special needs if it could lead to financial disaster when medical bills pile up?

As someone who desperately wants to see the need for abortion eliminated, I believe that we must ensure that children born with special needs get excellent medical care without financial burden to families who already have additional needs to consider.  We must eliminate as many barriers as possible to people effectively parenting their children with special needs, so that parents feel equipped to welcome their child with a prenatal diagnosis into the world without fear of losing everything they have.  And even more, would anyone be foolish enough to adopt a child with a pre-existing condition?

Excellent medical insurance coverage is essential to the pro-life platform.  We simply cannot expect people to bring children into the world when they fear they cannot afford to provide their medical needs.  We cannot allow carrying a child with special needs to term to become a recipe for financial disaster.

About the author

Alethea Mshar

Alethea Mshar is a mother of three children, one typical daughter and two sons who have Down syndrome, one of whom has autism spectrum disorder and complex medical needs. She has written “What Can I Do To Help”, a guide to stepping into the gap when someone you know has a child diagnosed with cancer, which is available on Amazon, and is publishing a memoir titled, “Hope Deferred”. She can be found on Twitter as leemshar, and blogs for The Mighty HuffPost as Alethea Mshar, as well as her own blog, Ben’s Writing Running Mom on https://benswritingrunningmom.wordpress.com/. She is also on Facebook as Alethea Jo Mshar.

1 Comment

  • Thanks for this article. It helped me see a side of things I hadn’t considered before. The pro-life movement does need to embrace and support difficult situations like this.