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