Rachel's Health Care Situation

My 24-year old daughter, Rachel, has been covered for several years on Medicaid and was recently switched over to medical coverage provided by the Affordable Healthcare Act.  Rachel has a genetic condition known as Smith-Magenis syndrome.  She is mentally challenged.  And she suffers from seizures and other health issues related to her disability.

Several weeks ago Nadia, my wife, took Rachel for an appointment with the neurologist whom she has seen for many years.  This doctor accepts Medicaid.  Upon arriving at the office Nadia and Rachel were informed, however, that the doctor will not accept patients who are covered under the Affordable Healthcare Act.

This was upsetting because this doctor provides important care for Rachel.  He has seen her for most of her life and is familiar with her condition and her medical history.

Nadia offered to simply pay for his services out of our pocket.  She was told the doctor could not do that.  In fact, she was informed that would be illegal.

(I’m still puzzled how paying a doctor out of our own pocket would be illegal, but I’ll just continue on with the story.)

Referring to the health care ID card provided by the system under which Rachel is now covered, Nadia called the primary doctor listed on the card.  She was informed by this doctor’s office that they are not taking patients who are covered under the Affordable Healthcare Act.

This is the doctor who is listed on the card!

Nadia has contacted Aetna, the insurance company, that our plan utilizes and, at this point, they have been unable to refer a doctor in our area for Rachel.  We are still attempting to communicate further with Aetna.

Nadia has also contacted the office of our state representative, Bill Cunningham, hoping for help, direction and solutions to our situation.  She has had conversations that basically could be summed up in this way:  Sorry, but this is what we have in Illinois, right now.

So, Rachel is no longer able to see any of the doctors who have treated her for her entire life and, at this point in time, she really does not have a doctor.

It is my intention with this post to: 1) provide a simple account of our experience.  And 2) speak up for my daughter who is unable to speak up for herself.

I’m just a dad with a handicapped daughter whom I love.  And I am writing on her behalf because she cannot write her own story.

It is my understanding that the social programs in our country—like the one Rachel is currently depending on—are supposed to provide quality help and care, without a change of doctors.  I would think this would be particularly true for the most vulnerable.  Rachel is one of those who is vulnerable.  She has health issues that render her physically vulnerable.  She is also vulnerable in the sense that she is not able to care for herself and she is unable to advocate on her own behalf for complicated issues like this.

The fact that our system has now resulted in a situation where someone like our daughter, Rachel, is currently without all of the doctors who know her is sad, puzzling and, quite frankly, shameful!

Dan Marler

Oak Lawn, IL

God Has A Purpose For Every Person

My daughter, Rachel, has a genetic condition that is known as Smith-Magenis Syndrome.  This results in certain challenges both physically and mentally, including diminished intellectual capabilities.

Her condition might lead some people to conclude that Rachel has very little, if any, meaningful contribution to make to our world.  I certainly understand and would not argue with the fact that her challenges limit the kinds of contributions she will be able to make in life.  For example, she will not offer any new and advanced surgical procedures to the world of medicine—but frankly none of the rest of us are likely to do that, either.

However, I would argue that Rachel’s limitations do not mean that she does not contribute to the world.  And, I have found that she has a way of making contributions to the lives of others that “regular” people are not likely to make.

For example, a friend of mine went through a period where he wasn’t at church very often.  One Sunday when he attended a service, Rachel greeted him with genuine joy and excitement, giving him one of her patented Rachel mega-hugs.  We know these greetings from Rachel are genuine because if she is not joyful and excited about seeing someone she, typically, ignores the person. 

He has told me several times that that was one of the most meaningful things that he experienced at church.  I believe part of the reason it was so meaningful for him is because he knew that the excitement of seeing him was authentic on her part and because of his appreciation for the unique person that Rachel is.  I would suggest—based on his comments to me—that was a positive contribution to his life that no other person could have made.

I will admit that I have wondered why God made Rachel the way that he did.  But I never question whether she is worthwhile and valuable.  She is a priceless gift of God in my life (while occasionally irritating me, as all children must do), the lives of my family, and the lives of many who know her.  

I love her just the way she is.

It’s important for us not to be too presumptuous about making determinations regarding which persons are valuable and which persons are not valuable.  Some people definitely have greater capabilities than others but I do not believe they have greater value in God’s eyes.  And God has a purpose for each one.