Thinking Out Loud – Tex interviews Jill Rubolino about the IACC

texJill Rubolino, co-founder of Autism is Medical (AIM) talks about the upcoming IACC meeting in Maryland on October 29. What is the IACC? Who is in charge of making policy regarding our autism and our children’s health? How can we get more involved? Where do we learn about the medical rights of our children? How do we advocate for them? Watch this interview and learn!

 

 

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4 Responses to Thinking Out Loud – Tex interviews Jill Rubolino about the IACC

  1. Carolyn says:

    A big shout out to Jill Rubino and the work of the folks at AIM. As a parent whose son has been denied medical choice, we felt it was important for him to summit written and pubic comment at the last IACC meeting as well as an individual with ASD. That day was quite frustrating for several reasons. He also was participating in some medical tests via the NIH on a study they are doing related to adults with ASD and brain inflammation, something we feel could be vital to show biological causation. However he was not accomodated as requested, as a person with ASD, for the meeting nor was the planning for the research study participation executed as we were advised. We traveled to DC from MI at our own expense however because we felt it was necesssary to do so, especially after the death of Alex Spourdalakis and his denial of appropriate medical care and choice options for his family. We also provided written testimony to the committee as parents and our son provided written and public comment on this issue.

    You can watch the meeting via this link and I’d urge parents to do so. Listen to the presentations and learn how this committee is functioning at this point. You will see those that submitted public comment are not allowed to have questions asked from committee members. Our son had asked to be allowed to present his public comment if possible in the beginning, a reasonable accomodation, and he wasn’t allowed to do so and was grouped with us even though we submitted comment seperately, myself as a parent, and my husband on the topic of data collection on crime reports as a professional. We were all lumped into on comment and you can see it was indeed a frustrating experience for us. Our son however did well and we are very proud of him. Especially considering they never advised him when he would be given public comment opportunity, nor was he notified he was on the agenda to do so until the evening prior to the meeting. That day, prior to testifying, he also had his blood drawn, did an EKG, and discussed the research study with professionals from the NIH. So please watch his public comments as a self-advocate that at one time had severe autism and still struggles with communication. He is a living example of how meeting ones medical needs appropriately can provide a path for better options. Hopefully he will inspire you as parents to write letters and support folks like him to obtain the health care needed.

    Please also consider attending on Oct. 29th if you live in the area. As Jill has indicated, it is vital that our voices be heard about medical choice and appropriate medical care for our children. Especially since this has been put on the table at the July 9th meeting. Now is the time to do so. You must register prior to doing so and submit your testimony as well at least two weeks in advance. I suggest not being identified with AIM on that request so they don’t put everyone together to limit the time for public comment as they did with us.

    http://videocast.nih.gov/summary.asp?Live=12921

    Please folks submit written testimony for the October 29th meeting to specifically address health care choice. We need to keep this topic on the table until it is addressed as Tex and Jill have indicated. The members of the committee are supposed to be supplied comments prior to the meeting. We want to make sure those are submitted prior to October 15th to ensure there are 14 days to allow that process to happen.

    Additionally with the government shut down the IACC staff is not functioning. So this may delay events. Comments submitted are also suppose to be placed in the record so it is essential that those be provided to the IACC. Also e-mail Jill and copy and if you can also supply Lyn Redwood, via Safe Minds, a copy to ensure that your letters are received.

    Here is the contact information for the committee and please address your letters to the chair and committee members.

    You can also find out more information about the IACC and its members here:

    http://iacc.hhs.gov/about/member-roster.shtml

    Additionally when you have time if you have not looked at the past work of the IACC you may want to do so. It is also important to note that the Health and Human Services Secretary, Kathleen Sebelius, selected the current members of the IACC from several nominations since she is who the committee reports too.

    Please address your letters to the Chair of the Committee and all committee members via:

    Thomas R. Insel, M.D.Director

    National Institute of Mental Health,National Institutes of Health

    Bethesda, Maryland

    If you have any questions the committee contact person is Ms. Perez. Your written comments can be sent to her via e-mail.

    Ms. Lina Perez

    Office of Autism Research Coordination

    National Institute of Mental Health, NIH6001 Executive Boulevard, NSCRoom 6182A

    Rockville, Maryland 20892-9669

    Phone: (301) 443-6040

    E-mail: [email protected]

    Remember too folks no one will advocate for our children like we can, or they can, we need to do this now.

    Thank you,
    Carolyn

    “Be the change you wish to see in the world” ~ Gandhi

  2. Nikki says:

    Thanks for your help with spreading the word Tex! Great job Jill! You both look gorgeous đŸ˜‰ xoxo

  3. Sunflower says:

    Fantastic!

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