Finding Joshua the Best Treatment for Autism Available

Since Joshua was approved for the Katie Beckett Waiver, I have been taking all the steps I can to get services set up for him that would provide him with every opportunity to benefit from these specialty designed treatments  for autistic children.  It hasn’t been easy, however.

I soon discovered after Joshua had been approved for the Katie Beckett, that I couldn’t just sit back and wait for any help as to what to do next.  I didn’t receive any calls or letters from the State and I wasn’t hooked in with the pediatrician other than for the knowledge that I would need referrals for services.  How I found out what to do was to start calling service providers.  When I called about Speech, Occupational and Physical Therapy, I was told I’d need the doctor’s referral to get started.  This also happened when I called for IBI (Intensive Behavioral Intervention, which is essentially the same as ABA or Applied Behavior Analysis) services.  To get a doctor’s referral, I had to first get Joshua a physical and then make a separate appointment to get the referrals.  Why they couldn’t happen in one appointment, both the physical and referrals, I just don’t understand, as it seemed like a waste of taxpayer money to me, not to mention my time and Joshua’s as he had to go late to school two days instead of one.

Once we saw Dr. Craddock and got the referrals, I called two different providers to get Joshua set up with Speech and Physical Therapy.  Occupational Therapy is going to have to wait until more treatment providers are hired by the providers we are already seeing, unless I want to go to 3 different outside providers.  My goal has been to work with rehabilitative therapies who work with Syringa, the organization that provides IBI and Developmental Therapy for Joshua as some providers will even work from Syringa.  I’d love to have Joshua get therapy in such a way that we aren’t running around each day to different places.  That dream may have to wait, however.  Currently, we will be having IBI be home based 2 afternoons a week; Developmental Therapy out with us on community outings, twice a week; Speech Therapy and Physical Therapy after school at their offices on Tuesday and Thursday afternoons.

Through Colleen Sisk, the director of Syringa Family Partnership, who supports the biomedical treatment for autism I’m doing with Joshua, I was introduced to Lisa Robbe, the Director of Partnerships for Inclusion, a Family Care Coordination program that helps parents navigate the system and get the treatments and supports they need in caring for their disabled child.  Lisa and I met and talked for about 2 hours about the Katie Beckett Waiver and what changes where happening in the Children’s System Redesign, scheduled to begin July 1, 2013.  It’s still a bit foggy for me, but at that point, IBI , DT, and Family Service Coordination for children with developmental disabilities, is supposed to be discontinued.  Great.  All the ABA type services we are trying to get for Joshua, no longer offered as of next summer.

All is not lost, however.  What seems to be happening, in an effort to save money, the State is having to cut back on the hours offered from the 22 hours a week, currently available for IBI and Developmental Therapy, to 10 hours a week of what now will be called Habilitative Intervention (aka IBI) or Habilitative Supports (Developmental Therapy).  The budget that Joshua will be given is $29,300 a year and that will need to cover this therapy, 6 hours of respite a month, and an assessment.   Wow!  The other choice for us is to go Family Directed with this Redesign System.  The Family Directed budget gets dropped to $14,900 and although I could most likely get biomedical treatment and supplements covered, I would be shouldered with a lot more paperwork, not to mention finding and hiring our own therapists to do the IBI or other type of therapy and writing up treatment plans.  Honestly, I may look at doing that at some point, but not the first time around.  I have plenty to do, thank you!  As for the Family Care Coordinator, I don’t know how that will be handled once the System Redesign takes affect.  It certainly is a needed program as trying to navigate this system is a challenge, indeed!

Currently, however, we are electing to go under the old system, to get the most bang for the tax payer buck.  We are set up to receive 4 hours of IBI and 4 hours of Developmental Therapy, but since we are entitled for up to 22 until June 30th, the trick is to not only find the hours to use the therapy, since he’s in school 6 hours a day, but for Syringa to find more IBI therapists as they are in high demand.  During the discussions while getting our needs assessed, it has also been suggested to see about getting a Personal Care Services, which is comes out of a separate budget, due to Joshua having difficulty with toileting (he doesn’t wipe), learning to dress properly (his clothes are typically askew and underwear not on properly shall we say) and he has poor judgment with being safe, jumping on siblings, getting sharp knives for me to cut fruit, getting out of the house without permission or supervision, etc.   Having someone to come help with those needs would add some hours of help we can get for him to learn how to better care for himself.  From what I understand, this is available in Washington, but I didn’t make use of it due to his age at the time made it more difficult for him to qualify.  Since the SIBR evaluation places him at about an average 2 and a half year old with all his scores combined, he obviously has delays that need to be addressed.  I have the evaluation for these services set up for Friday, November 30th, so hopefully, we can continue to see how to help Joshua to improve.

As best that I can ascertain, what I am setting up for Joshua will be quite beneficial to him.  He is already making some progress with his program at school as well as the speech and physical therapies he’s doing.  The boy is like a sponge and it just takes working with him consistently.  I’m so grateful we have the help, whether it’s 22 hours a week, or merely 10, it’s up from what we were getting in Washington outside of school and OT/Speech Therapy.

My next order of business is to see how we can get more biomedical treatment paid for.  Both Bryan and I are trying to see what we can do to earn more money with some side jobs, but it never seems like enough.  I’m impatient, but I must always keep in mind that Joshua is God’s kid first and step by step, He’s doing a great work in Joshua so we just have to keep the course and be good stewards of all these resources that God has so graciously provided through these programs and continue to allow Him to guide us along this journey.  To God be the Glory!

Yeah, we have some work to do with this boy. As cute as this is…

Closing one chapter…

Waiting for Joshua to emerge for a new beginning and become the best of whom God created him to be…

 

This entry was posted on Tuesday, November 20th, 2012 at 5:09 am and is filed under Autism Resources, Autism Treatment. 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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