To: Luz Robles, Jim Dabakis, Gene Davis, Pat Jones, Karen Mayne, Wayne Harper, Deidre Henderson, Brian Shiozawa, Wayne Niederhauser, Aaron Osmond, Howard Stephenson, Daniel Thatcher, Mark Madsen, John Valentine, Margaret Dayton, curt, Peter Knudson, Stuart Reid, Allen Christensen, Scott Jenkins, Jerry Stevenson, Stuart Adams, Todd Weiler, Ralph Okerlund, Lyle Hillyard, Kevin Van Tassell, David Hinkins, Evan Vickers, Steve Urquhart,
Subject: Autism Waiver
Date: Mon Jan 13 17:26:23 MST 2014
Dear Honorable Utah State Senators:
We are writing to first thank you for initiating the Autism Waiver program and second to encourage you to pass legislation requiring insurance to cover ABA therapy.
To help you understand how strongly we feel about these two issues, please allow us to explain our situation. Our son Harlan was diagnosed with autism in the fall of 2011 at the age of 4. It was a difficult thing for us to hear because we were basically told our son's future was non-existent and there wasn't much to be done for him. The diagnosing neuropsychologist even suspected mental retardation in Harlan's case. This was coming to us after Harlan's first two years of life were mostly normal developmentally.
At this point, the neuropsychologist told us Harlan needed 20 to 30 hours of ABA therapy a week. We live in Cache Valley and the only ABA programs in the area was the ASSERT program at USU and another in Weber County. Both were full and Harlan would age out of their programs before his name came up on the waiting lists. Our choices were to 1) move, 2) drive to Salt Lake every day, or 3) attempt to do therapy on our own. Moving would mean a job change and possibly going to a different state where ABA is either provided in the schools or insurance is required to cover it. We have four other children besides Harlan to consider in any such decision. At the same time we couldn't abandon hope for Harlan's future. We felt it would be best to at least try the therapy on our own before we uprooted our family or sacrificed the financial stability of our family. If that didn't work, we would have to make the tougher decisions.
We paid $2000 out-of-pocket to have an ABA program written up and to be trained to run the program on our own. We hired additional help which we also paid for out-of-pocket. Despite our inexperience, Harlan responded remarkably well. By our annual re-evaluation visit, Harlan had excelled enough to rule out mental retardation. The only problem was the strain it was putting on our family life and personal health.
Just when we were at the end of our rope, the Autism Waiver came along and it has been an invaluable blessing for our family. We can cannot adequately express our gratitude for this program! Thank you for putting it into place and we beg you to continue it for all the other families who have found themselves in our situation. Having an autistic child is an exceptionally lonely road and any help is tremendously appreciated!
One of the many great things that has come out of the Autism Waiver program comes down to the old supply and demand. Before the waiver, there were absolutely no private providers offering ABA therapy in northern Utah. Now because of the demand, we can actually find services without having to move or commute.
At the end of August 2014 Harlan will age out of the program regardless of whether the program is continued. He is still in need of ABA therapy which has helped him progress immensely. We do not qualify for Medicaid and to continue the current program will cost us roughly $1500 per month. Obviously to pay for the therapy out of pocket will require a great financial sacrifice for our family which will impact the futures of our other four children. This is a very difficult decision for us. Do we sacrifice Harlan's progression and future possibilities or do we sacrifice the financial stability of our family? We have even considered moving to Texas where insurance is required to cover ABA therapy up to the age of 10, but again that option demands a big sacrifice for our other four children.
We have worked hard to provide for the needs of our family and to qualify for a career that could give us the necessary medical insurance coverage. We are willing to pay what we can for Harlan's therapy but it is far in excess of what we can afford. Because of these considerations, we implore you to pass a bill that will give our family the insurance benefits we need.
Even taking an analytical view of the issue with all sentiment eliminated, it still makes sense to pass such a bill. The rate of autism is increasing dramatically. When Harlan was diagnosed, the rate was 1 in 150 children nation wide, two months later the CDC increased the rate to 1 in 110, and then again six months later the rate was increased to 1 in 89 in the state of Utah. As the rates continue to climb and these children become of age, the financial burden will shift to the Medicaid, Medicare, Social Security, and Utah state welfare programs. If we can change the course of their future early enough by giving them the opportunity to function at a higher level in the future, the end expenditures and resulting financial burden is going to be significantly less.
We are not asking for a hand out. We are asking for insurance to accept the responsibility of providing medical services that our child desperately needs while we shoulder the portion we are responsible for. In one form or another society at large is going to be impacted by the rising rates and needs of autism—let's make it count as a positive for everyone involved.
Thank you for taking the time to understand and consider our position and requests. Again, thank you very, very much for the Autism Waiver program! The strides that Harlan has made in this program are invaluable to us. If you have any questions or comments, please feel free to contact us at (435) 245-3488,
firstname.lastname@example.org or 762 West 300 North, Hyrum, UT 84319.
Sam & ShaNee Boucher