Parent Interview: Success in Obtaining ABA Therapy

Today's Interview is with Vera M. Vera is a mother of a 5 year old child with Rett Syndrome (Form of Autism). Vera was successful at obtaining ABA Services for her daughter recently.



Who did you have to advocate with for ABA services? Was it the school or insurance?



I dealt with the local regional center. The Local Regional Center coordinates the special need services in my school district.



What was your daughters classroom like?



My daughter has been attending a typical Pre-K classroom for 3 hours each day with a 1:1 aide that our district hired from an ABA company on my request.



Was the school district open to providing the ABA therapy upon request?



No. I asked that the regional center fund an additional 2-3 hours of in home ABA in the afternoons and they initially refused.



Did you ask the reason for refusal, and if so, what did they say?



Yes. They said ABA therapy was inappropriate for a child with Rett Syndrome. They also said things like: She has to be in an Autism Class for this service and Rett is not an ASD (autism spectrum disorder)



What did you do next to resolve the issue?



I requested a meeting with the Autism Board who makes the decision and an appointment was granted.



What Happened at the Meeting?



When meeting with the 7 members of the Board last week, I laid out my strategy. I said I was not there to argue appropriateness of any therapy for a diagnosis. I was there to argue that ABA therapy was appropriate for my daughter.



I also said I was not the only one who strongly believed this. I presented letters of support from my daughter's treating physician (Director of our local Rett clinic), DAN doctor/Homeopath, ABA company providing the aide in school and also Judy L (my daughter's case manager and AAC/AT expert). Each person said they were prescribing 25-40 hours of ABA therapy per week, consistent with ASD intervention.



I then explained that during school, my daughter's academic goals are: socialization, communication and interaction. Her goals for in home therapy are: Social & Functional Communication and Adaptive. There is no time to work on the latter goals during her three hours in school.



Specifically, Lilia's expert team and I would like to see her learn to navigate her new Tango communication device independently so she can communicate her desires and have her needs met. I explained that when she is frustrated from inability to independently communicate, she exhibits behaviors (I had to use Autism speak, even though this made me cringe!). These behaviors include teeth grinding, tugging on her hair with her right hand and other signs of frustration.



Learning to navigate a new communication device requires lots of repetition, time and learning. Additionally, we would like her to practice interaction via reciprocal turn taking. Again,, this requires practice and repetition. We'd like to see her strengthen independent learning skills to fade out adult support (again, being able to communicate through independent Tango navigation). There were more goals, but you get the jist.





What was the result of this meeting?



After a 20 minute presentation, I was given approval for 10 hours of in home ABA therapy with the same company that goes to school with my daughter. The regional center will also be providing additional time for preparation, set up and writing goals.





What do you feel was the most important advocacy tool you used?



I'm not sure if this was a good or bad comment, but the members of the board said they had never met anyone like me. I decided to take that as a compliment and said "thank you" and smiled. The point is not to give up. I have always won everything in appeal. Figure out their objection and remove it. That's my strategy.

As this interview concludes it is important to note that Vera did many important advocacy steps:

She called another meeting, gathered important information including medical reports and letters of support, provided reasons why this service was appropriate for HER daughter specifically, outlined the goals that they wanted to work on. She even tied her outcomes to socialization, something her daughter was not currently receiving services for.



Great Job Vera!!!

Music Therapy--My Personal Experience with Adding Music Therapy into an IEP

Today I will tell you about how Music Therapy was added to my daughters IEP.

Music Therapy is a service that in many schools opinion is a costly add on only reserved for those parents who show a distinct interest and advocate for it. Therefore, rare is the school that will actually come out at a team meeting to recommend it as a related service. Sometimes they will when it is already a service being provided for another child in the classroom.

In this posting I am speaking about the Music Therapy where a teacher who is familiar working with kids with special needs will come into the school to work with a group of kids. Sometimes, the therapy will involve goals in the IEP and others its listed as a additional service somewhere in the IEP.

I am not speaking about Music Therapy provided one to one with a student with direct goals and objectives. This is something I have not seen provided in the schools I've dealt with and is usually covered outside of school by insurance. If someone had an experience getting one to one music therapy in school I would love to post your success and how you went about it.

The Federal Laws Standpoint:

Artistic/cultural programs are specifically mentioned in the federal regulations for IDEA as "other developmental, corrective, or supportive services (such as artistic and cultural programs, art, music, and dance therapy) if they are required to assist a child with a disability to benefit from special education in order for the child to receive FAPE" (U.S. Department of Education, 1999a, p. 12548). Artistic and cultural programs are designed by art therapists, dance therapists, and music therapists to address the individual needs of students with disabilities. These professionals:
assess the functioning of individual students;
design programs appropriate to the needs and abilities of students;
provide services in which music, movement, or art is used in a therapeutic process to further the child's emotional, physical, cognitive, and/or academic development or integration; and
often act as resource persons for classroom teachers.

www.wrightslaw.com


Steps to introduce Music Therapy into your child's class:

1. I found it was easier to obtain the therapy since my child was in a self contained classroom. It gave all the children in class access to the therapy. If your child is integrated you may find that he may be taken out of class with a group of kids that all can benefit. Maybe in a class down the hall a child you don't know about is receiving music therapy. Can your child attend also?

2. You may need to get an evaluation from a music therapist in the area. They can assess your child and write a report to show the school how the child would benefit. You may have to pay for this evaluation but its yours for life. The school may say that they can't find a music therapist. At that point you can say that the person who did the evaluation is available to come into the class once a week for an hour long small group session (you'd have to find this out first of course). That is another reason to seek an evaluation..it gives you a resource to bring to the school. Sometimes the school will agree to hire the person as a consultant for a period of time. Other times they may decide to hire their own Therapist. Sometimes the school may even agree to send your child to the Therapy Center after school.

3. If you live in MA you have even more leverage for Music Therapy if your child has Autism. The MA Autism Bill in 2007 went one step further than the Federal Law to state the the team need to consider other options when providing services to promote Social, Educational opportunities.
You can look this up at:
http://www.massadvocates.org/autism_project/autism-iep-bill-passed

4. If the team refuses to provide music therapy you have a few options. You can call another meeting, gather more information including evaluations and try to work it out. Or, you can sign the IEP but reject the Music Therapy portion. The team will then hold an emergency meeting to try to resolve the issue or you can go to mediation. The third option is Due Process which at that point I always recommend having a Legal Advocate to assist you.


In our case, the school provided music therapy to my daughters class once a week. Everyone benefited from the therapy. Warning: Even though the school did say she would receive it I found that they didn't actually write it in the IEP. You want to make sure its in the IEP with time frames. You don't want to move schools or classrooms someday and find that they won't honor the therapy because its not in the IEP.
Also, if you don't have time frames:i.e. once a week for one hour, they don't have to provide the compensatory time if the therapist is out.


Good Luck!!