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Autism Law Set to Expire Later this Year | Autism Key
 

 
 

Autism Law Set to Expire Later this Year


In the closing days of Autism Awareness Month, the White House sponsored an Autism Awareness Conference. Senior Adviser to the President, Valerie Jarrett and Secretary of Health and Human Services Kathleen Sebelius, spoke to an audience of parents, advocates and experts at an Autism Awareness Month Conference at the White House. The speakers touted the fact that because of Obama’s healthcare reform, children can stay on their parent’s insurance until age twenty-six, an advantage for young adults on the autism spectrum. They also committed themselves to the re-authorization of the Combatting Autism Act (CAA), which is set to expire in September of 2011.

The original legislation was signed by President Bush back in 2006. With its emphasis being research, with some funding for outreach and awareness education, it established the Interagency Autism Coordinating Committee (IACC) to advise the Secretary of HHS on all matters relating to autism and develop and update an annual strategic plan for autism-related research. 

Now, the old structures must be transformed into a new National Institute for Autism Research, with the grant making process streamlined to get the most value for today’s dollars. The CAA law provided for research relating to services and support but was not designed to actually fund them. Several bills have been introduced during recent sessions relating to these services, such as training, restraints and seclusion issues, wandering disorder and infrastructure, but none of these has passed. 

Comprehensive national legislation is urgently needed to fund these and other vital issues, particularly as Medicare is under attack and our children with autism will age out of the few resources there are. 

And while insurance reform for autism has passed in over 20 states, there is strong popular support for “repeal and replacement,” so CAA 2011 must provide for parity of coverage with other medical conditions and ban all forms of insurance discrimination arising from an autism diagnosis.

In this current political climate where every program is fair game for elimination, passage of CAA 2011 will require a strong grassroots effort. In order to lend your voice to the movement go to:  http://capwiz.com/aucd/issues/alert/?alertid=29067511

2 Responses to Autism Law Set to Expire Later this Year

  1. Phyllis M. says:

    Dear Parents and Advocates,

    Your help is needed with the email request below.

    Please take the time this week to write a short letter of support for the Keeping All Students Safe Act, S.2020 (U.S. Federal Bill).
    Everyday children with disabilities are injured physically and mentally by being restrained put in seclusion or subjected to other aversive practices by school staff in the name of treatment. Your help is needed to get laws passed to keep our children safe. Please help STOP these abusive practices from being used on our children any longer. If your child has not been subjected to these abusive practices, please don’t wait until this does happen to your child. Act now by writing a letter to support the Keeping All Students Safe Act, S.2020.

    Please read the email below to help guide you in writing your letter.

    Regards,

    Phyllis Musumeci
    Anna Moore
    Families Against restraint and Seclusion
    http://familiesagainstrestraintandseclusion.blogspot.com/

    ===================================================

    SEEKING PARENTS WITH RESTRAINT/SECLUSION STORIES FOR U.S. SENATOR HARKIN’S STAFF

    Last week, U.S. Senator Tom Harkin introduced the Keeping All Students Safe Act, S.2020, to protect students nationwide from dangerous restraint and seclusion. As the GAO (U.S. Government Accountability Office) has found, restraint/seclusion are dangerous, resulting in deaths, injuries, and trauma to children nationwide. WE ARE SEEKING LETTERS IN SUPPORT OF THE BILL FROM PARENTS THAT CAN BE SHARED WITH SENATOR HARKIN’S STAFF AND PERHAPS OTHER SENATE STAFF. WE ARE ALSO INTERESTED IN STORIES OF CHILDREN WHO RESTRAINED OR SECLUDED AND WHO MIGHT HAVE BEEN HELPED IF THE BILL WAS LAW. You do not have to have a story to send a letter. Please email Jessica Butler, Congressional Affairs Coordinator, Autism National Committee, at jessica@jnba.net if you have a story or think the bill would have helped your child, or if you would like to send a letter in support of the bill (even if you do not have a story). Please feel free to forward and share with others.

    HERE ARE THE HIGHLIGHTS OF WHAT THE BILL DOES. PERHAPS ONE OF THESE THINGS HAPPENED TO YOUR CHILD AND THE BILL COULD HAVE PREVENTED IT FROM HAPPENING. OR PERHAPS ONE OF THESE THINGS COULD HAPPEN TO YOUR CHILD (e.g. you live in a state with fewer protections).

    The bill bans all seclusion of children. This means that schools cannot lock children in rooms or closets or put them in other rooms or spaces they cannot leave (such as when furniture or a staff member blocks a door). Seclusion is dangerous; children have died or been injured.

    The bill prohibits physical restraint except in emergencies when there is an immediate threat of serious bodily injury. Far too often, children have been restrained or secluded for misbehaving, not doing their assignments, being noisy, behavioral control, discipline, punishment, threats of minor injury (like pinching), tearing up books or other minor destruction of property. Restraint can injure and kill students.

    The bill requires schools to use less restrictive measures before attempting restraint. In many cases, the school used restraint/seclusion first rather than trying less restrictive measures that would have worked. Sometimes, parents provided the school with behavioral analyses or information or information about positive supports or other things that would work and the school ignored it.

    The bill requires restraint to end when the emergency ends. There are reports that schools have continued seclusion and restraint long after any emergency ended, or required a child to perform a task or sit still for a particular period before they could get out. For some children with autism and other disabilities, this is almost impossible.

    The bill bans mechanical restraints, such as putting children in Rifton Chairs, or taping or tying them to chairs or furniture, or locking them into devices. It also bans chemical restraints, restraints that impair breathing or otherwise threaten life; restraints which are medically and psychologically contraindicated. Since prone restraint impairs breathing, it would be forbidden under the bill.
    The bill also bans restraints that prevent children from communicating. So, if a child needs assistive technology, PECS, or sign language to communicate that they are suffering or in medical distress, they cannot be restrained in a way that stops them from doing so. The bill bans aversives that compromise health and safety. All of these are dangerous.

    The bill requires schools to notify parents in writing within 24 hours of restraint and verbally the same day. Parents need quick notification because of the danger of concussions and other injuries that require quick medical treatment. In some cases, parents have not been told that their children were being restrained or secluded and only found out about it weeks, months, or years later.

    The bill prohibits putting physical restraint as a planned intervention in IEPs, 504 plans, behavioral intervention plans, student safety plans, or other educational planning documents for individual students. There are reports that restraint and seclusion have been put into children’s IEPs and then schools use them as the first intervention.
    If a child is physically restrained, there will be a debriefing with parents and staff to plan to prevent further restraint and consider additional services and supports for the child. A Functional Behavioral Assessment must be performed.
    The bill applies to all children in public school. It also applies to children with disabilities who have been placed in a private school at school district expense.
    The bill forbids retaliating against any parent, teacher, staffer, or person who reports that a child was restrained, secluded, or that the statute was otherwise violated.

    Please contact me if you are a parent who would like to write a letter of support or if you have a story. You do not have to have a story to write a letter. My email is jessica@jnba.net . For those on yahoo groups and other systems that cut off email addresses, my email address is jessica (at) jnba-dot-net

    Thank you,

    Jessica Butler
    Congressional Affairs Coordinator
    Autism National Committee
    21 years of advocating for the rights of people with autism and related disabilities
    http://www.autcom.org
    email: jessica@jnba.net [jessica (at) jnba.net]

    ================================================================

  2. susan says:

    Thank you for writing and sharing this information.

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