Thursday, January 3, 2013

The Ethics Of Therapy For Children With Down Syndrome - Breaking Up Is Hard To Do, But Getting Dumped is Worse

Happy New Year! A fresh start! A new opportunity for growth and improvement. That is what my mind should be thinking.  That is the spirit and energy I should be approaching this new year with.  Instead, all I can think about is this, 2013-- a new year and a new deductible. First there is the $2500 individual deductible that Joey usually clears by mid-February. Then there is the $5,000 family deductible that is mostly cleared by him around April/May. Then there are the therapy limits.

Our insurance limits his speech therapy to 20 visits per year. Not even once a week is covered and so right around the time we hit the deductible we start paying out of pocket for his speech therapy because it is no longer covered after visit 20. This is a choice we have made. We have decided that trying to help Joey to speak as well as he can will give him the best possible opportunities to be able to communicate in the greater world as he gets older. It will help him learn. It will help him have relationships. It will help him help himself and keep him safe, which is one of my greatest worries for Joey. We are fortunate to have found a wonderful speech therapist who loves Joey as much as he loves her. He has started to make many more sounds including "g" and "k". His first word was "Da Da" and he uses it purposefully when he sees his dad. His second word was "Car"-- oh the irony.  Of course his second word was "car." Tommy and I work hard daily to encourage and get him to say "Ma Ma." It will come. Does he have Apraxia? It is possible. His therapist and I have spoken about it and it may be one of the speech challenges Joey will have to overcome. 

Working on the stairs! 
Physical therapy is also limited to 20 visits per year. The struggle I have is that for a 2 1/2-year-old-boy who cannot walk and cannot talk, we are impeded by these insurance mandated limitations on his coverage.  Occupational therapy is also limited to 20 visits per year. Last year was our first full year of therapy and we blew through our coverage without keeping track and without realizing just how costly it would end up being once we had to pay for it out of pocket for the last four months of the year.

This year we are trying to be better planners.  We are sticking with speech therapy every week despite the out of pocket expenses. We are trying to do physical and occupational therapy every other week in an attempt to stay within our insurance confines.  On the alternating weeks I am using my Down syndrome resource books from Woodbine and the lessons from therapy to try and re-create and practice what we learn during our priceless sessions. 

We had finally found a wonderful Occupational Therapist (our 4th) who Joey loved and who was very close to home.  That is the other thing about therapy.  Even though the sessions last 30-60 minutes it is usually a 30-60 process of getting out the door and to therapy and then doing the same to get back home.  Overall, one therapy session usually entails about 2-3 hours from start to finish.

Our first OT experience was in a clinic where they did OT, PT and ST all at once. Joey was completely exhausted and overwhelmed. We went through 2 OT's in that clinic. We then broke out all the therapy sessions into individual ones and we met our 3rd OT.  This OT was a nice person, but the day she used the R-word during our session and then denied using it when I asked her to please not use it in front of us, I knew we would probably need to move on.

Then came OT #4. This OT was very enthusiastic and very encouraging.  Joey seemed to really like this OT. Back in December I explained to this OT and to the office that starting in 2013 we would have to reduce our OT visits to every other week in an effort to stay within our insurance coverage. 

Breaking up is hard to do, but getting dumped is worse. Our OT and the office told us that if we did not come every single week to therapy they would no longer serve as Joey's therapist. They said that they had changed their office policies and now would be requiring every patient to come every single week. 

"But what if your patient's insurance won't cover those visits?" I asked. I was told that those patients would have to pay out of pocket if they wanted to continue to be seen. 

I cried. I was hurt. I thought that our therapist and the office cared about Joey's progress. I pushed. I questioned. I argued. I asked our therapist to advocate for us, but the therapist stood firm on this new office policy. 

Is this ethical? I don't know. What I do know is that it sure didn't feel very good and something about it just didn't really feel right.  I've been dumped before, but my child hasn't and that is the worst kind of heartbreak a parent can experience. 

Meeting Sunny- Aunt LuLu and the girls' new puppy.
I put my chin up and started interviewing new therapy centers. The thing is- as a parent you have to work around your other children's schedules, your child in therapy's schedule-- it's some kind of incredible Rubik's cube to sort it all out. To be kicked out a program and spot you thought was working for your family is brutal.

I called our therapist and said that we had a Christmas present for the therapist that we would be dropping off.  I took the gift and Joey in so we could say good-bye and move on in 2013. The therapist asked us to please keep them updated on Joey's progress. We tried to take the high road and move forward, but keeping them updated is probably not going to be on our list of priorities.
Kisses from G-pa.

Has your child ever been dumped? Have you ever been kicked out of therapy? Is it ethical for a therapist to require you to attend every week even if it is not covered by insurance? 


  1. Thank you so much, Jen. You don't know how I feel your pain! To say that my family has misgivings about how the insurance industry treats autism would be an understatement. I really appreciate your carrying the message on this.

    Rich Mayer

    1. The treatment of children with disabilities is incredibly frustrating and impossible to understand. It is especially difficult for middle class families who do not qualify for many of the funded programs. All we can do is keep raising awareness-- thank you for your comments, Rich!

  2. Jennifer, I LOVE your blog. I am the mom of three wonderful kids... Andrew is 15 and has Down syndrome, Christopher is 12 and has high functioning Autism, and Kallie is 10 and gifted! I have covered the specturm :) I am just currious what state you live in. Andrew started therapy at 6 weeks of age (still has speech and OT) and what our private insurance didnt cover Long term care did. We live in AZ and both our boys have services thru DDD (Department of Developmentally disabled) and health coverage thru AZ Long term care. I have not heard of any therapy place requiring EVERY week to be a patient. I would ask to see that policy in writing... Your boys are beautiful!! :)

    1. Your kids sound amazing!!!! I would love a daughter to round out these two boys!!! :-)We live in Ohio and our county program has moved to a "consultative" therapy model in which we don't get actual therapy sessions anymore and we are on a list for a "waiver", which would someday help cover some of Joey's medical costs. Unfortunately, the financial requirements for many of the local programs requires that you almost be at the poverty level. I also have NEVER heard of requiring therapy every week-- it seemed so unconscionable to me. Thank you for visiting and for your comments! Tell those awesome kids hello from Ohio!!

  3. I just found your blog and am so sorry that you're dealing with insurance issues as well as weird therapy 'rules.' My daughter, now six years old, has 5p- syndrome (Cri du Chat.) She began therapies at a year old through Indiana's First Steps program. She was in this program until she was three years old and it provided four hours of weekly therapy. She got PT, OT, ST and DT, every single week until she was three. We never once had to pay out of pocket and my insurance was/is actually pretty good.

    I now live in Ohio and she received weekly therapies while at school. We are still not required to pay for any of these.

    Does Ohio not have an early intervention program that provides for these things?

    It amazes me that you're required to pay for essential things like therapies on your own.

    I'm so sorry!

    By the way, your boys are just beautiful.

  4. As an OT with my own business, I can say that their policy sounds pretty unethical to me. Intensity and frequency of visits should be determined by need only, and to require each child to come weekly is absurd! That is clearly a decision made based on convenience of scheduling and economics rather than need. Now, it is possible that Joey does need weekly therapy, but that is not the argument they made. I see most of my clients on an every other week basis, and it works very well as long as parents follow through with my recommendations at home. Unfortunately, a commute to Maine every other week wouldn't be too practical for you... Hugs!

  5. We have six therapy visits total with our insurance. We can only see pt once a month

  6. Jenny...I would say run away as fast as you can from that therapy provider. to your site. Loved reading your post. I have a 13 year old daugher with Down syndrome. She's a go-getter and is highly independent. I'm not going to write a bunch, but I would encourage you to think again about Ohio's Early Intervention services. It sounded like you were skeptical about the "consultative service" model, but I think you might want to think about all of the learning opportunities that Joey could be missing just from running around to various appointments. Through a consultative model, he is not having to have his typical day disrupted and the professional staff are helping you to see how you can maximize what he and you are already doing to promote growth and development. This is the beginning of inclusion. It just doesn't start in school. He will learn more from you and others that he is familiar with than from any therapy setting. This isn't magic. He's a kid first.


Thank you for your comment! We read every comment!