The Katie Beckett Waiver and the Idaho Children’s System Redesign

When Bryan got his job in Spokane, we were thrilled to move away from the hustle and bustle of the West side of Washington State.  When my Idaho cousins told me about the Katie Beckett program for disabled kids, where they could now receive Medicaid and additional services, it made us really look at moving to the Panhandle of Idaho, rather than in the Spokane area.  We have been blessed and simply love it here and especially with all the help Joshua is receiving from the Katie Beckett waiver.

I had been in contact with two agencies that provide Intensive Behavioral Interventions for kids with autism, up to a year before we moved and I recall both of the directors taking the time to talk with me about what the Katie Beckett would have to offer Joshua once we moved.  They informed me of the changes that have come down from the State of Idaho, in the effort to save money, with the Children’s System Redesign in regards to the Katie Beckett.  Since we have arrived in Idaho and got Joshua set up with the Katie Beckett, I’ve been learning a lot about the Redesign as compared to the old system.  Since we are in this transition period, with the Redesign becoming official July 1, 2013, it seemed prudent to go with the original system to see what it is like, as Joshua is currently entitled to receiving 22 hours of IBI/DT services a week, not to mention Family Support Service Coordination.  Considering his Speech Therapy and Physical Therapy, with Occupational Therapy still to be scheduled for after school, fitting 22 hours of IBI/DT services in a week is quite challenging during the school year.   Once he transitions into the Redesign, he will only be eligible for 10 hours of Habilitative Services.  I’m hopeful we can also make use of the 10 hours a week of Personal Care Services he is now qualified for.  Joshua will make out just fine, I’m sure, as we are used to doing so much ourselves, and then, he will have a total of 20 hours of services outside of therapy.

Since we are coming up from having zero hours a week outside of school and the speech/physical and occupational therapies, we are simply having to adjust with having people in our home to help us with some of Joshua’s difficult behaviors.  I am actually quite thrilled as I am learning some great techniques from Kelli, Amber and Maria, the therapists on his team.  They are simply quite talented and devoted ladies and I’m so grateful for their help.  It is exciting to see how Joshua will continue to improve and develop more self control of his body and feelings.  What is of concern, however, is how these changes in the Children’s System Redesign will affect direct service hours and those who are working with the kids under this current system, who are in need of these service hours and will be drastically cut.

Lisa Robbe is the Director of Partnerships for Inclusion, Inc. and has been an IBI trainer, having trained roughly 600 IBI therapists.  Her current position with Partnerships for Inclusion is setting up Family Service Care Coordinators for families of disabled children.   We brought her aboard Joshua’s team to help with navigating the Idaho Health and Welfare system for us and helping us find all the resources we can to help with Joshua’s care.  In fact, she’s having our coordinator look for grants to help us pay for bio-medical treatments for Joshua.   I have learned a lot from Lisa, especially in regards to how services are going to change.  For example, instead of rehabilitative services, it will now be habilitative services.  With this slight change in the wording comes some drastic changes for “IBI is rehabilitative. Meaning it is treatment to improve a condition. Habilitative is not about getting better.”  Habilitative is for supporting someone in their environment.  The State claims that under the new system, the disabled child will receive Habilitative Intervention and although their goal is to provide a higher quality of services, some of the qualifications in which they are now requiring are going to put a lot of IBI therapists out of work, despite their many years of experience and superior skill sets:  “Interventionists will need to demonstrate that they have completed credit hours from an accredited university in the areas of applied behavioral analysis, child or human development, and learning theory/psychology of learning.”  Those who may have had similar classes or even degrees in special education, but not these specific classes, will need to invest both time and money to get re-qualified.

Lisa spelled out her concerns in a letter she recently sent out, which are valid issues we need to talk about with our legislators:

I am concerned that families and advocates in Idaho do not realize the significance of the decisions Idaho has made over the last 2 years that will result in Intensive Behavior Intervention (IBI) ending and forcing families into the Children’s Redesign – where access to any services is severely and legally limited, in spite of what Idaho Health and Welfare officials communicate.

I recently attended a training in Washington led by Attorney Scott Crain, with the NW Justice Center.  As a result of a lawsuit, the State of Washington is mandating Applied Behavior Analysis (ABA) therapy be covered for children with autism by all private insurance providers. They join over 30 states that now mandate this coverage by private insurers.  Idaho is not one of them.

Even more significant, also as a result of a lawsuit, the State of Washington will cover ABA therapy for children with autism on Medicaid – first via Early Periodic Screening Diagnosis and Treatment (EPSDT), but soon to be via their state Medicaid Plan. As I understand it, this is precedent setting.  The decision to cover this therapy in Washington comes on the heels of yet another successful lawsuit in Florida to ensure ABA coverage under EPSDT.

Mr. Crain was surprised to hear that Idaho has been covering ABA therapy for children with Autism and other developmental disabilities for over 12 years via our Medicaid State Plan (IBI) because he believed that Washington was the first state in the nation to offer this coverage under Medicaid. He and the other parents and advocates at the training were also shocked that Idaho would be ending this coverage June 30, 2013 and that no one has legally pursued stopping this action.

Based upon the lawsuit in Florida to cover ABA under EPSDT, as well as the recent decisions in Washington, it seems that precedent has been set nationwide for families of children on Medicaid who need therapy based upon Applied Behavior Analysis (as well as benefiting children with disabilities other than autism who need behavior therapy).

What can be done to help ensure a route for families in Idaho to continue to have access to this important evidence-based treatment? It seems absurd that after 12 years of investing in a system of service delivery and developing providers with expertise we are now watching this necessary program being dismantled. In all likelihood, it will only be a matter of time before a lawsuit in Idaho forces our state to develop a system to cover these important services, but how many millions of dollars will that cost our tax payers and how many people will suffer in the meantime?

Have Idaho families truly received the notice required under due process to alert them that these important benefits are ending?  I have only seen notices that explain that the Redesign offers an “array of benefits.” There has been nothing that describes the actual results of their actions: severe cuts in services for many families.

The time to act is now. We need to contact our state legislators immediately and notify them that changing the State Plan is not a fiscally or socially sound decision and that doing so will result in lawsuits the State will lose. But it’s up to us to act now to avoid expensive future litigation. Scott Crain – Staff Attorney, Northwest Justice Project, 206-464-1519 x 258 – is willing to share his team’s successes and provide information how families may be able to stop Idaho Medicaid from ending this important coverage. Families can not afford reduced access to medically necessary treatment for children with autism and other developmental disabilities and, therefore, neither can the State of Idaho.

Arzu Forough, mother of two children with autism, is the founder of Washington Autism Advocacy and can be reached via the contact section of their website.  She is also happy to talk with families or advocates to share their strategy.

Please contact me (or any of our Service Coordinators) if you want more information and/or help planning for how these changes will impact your family. We are also happy to connect you to your legislators. 

I look forward to talking with you!

Lisa Robbe, MPA
Director, Partnerships for Inclusion, Inc.

208-660-2519 phone

208-474-6400 fax

Honestly, it irritates me to no end how the most vulnerable are treated!  Especially with a population that simply needs Rehabilitative interventions to help them become productive members of society.  With autism rates currently 1/88 kids and currently rising, we would do much better helping these kids recover and heal than simply acting as though they can’t get much better.

This entry was posted on Saturday, December 15th, 2012 at 2:25 am and is filed under Autism Resources, Autism Treatment, General Autism Info. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


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