Need VA Autism stories

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It would be great to have familes log their daily challenges at school, home, community etc. etc.  so  JLARC can see what our families face everyday.

We do need families to also send in something to JLARC on the challenges they have faced so far in their autism journey.  So, please write up things about the challenges to get diagnosis from pediatricians, challenges of getting an appointment with Child Find, challenges in getting services etc. etc.

But – it would be great to see families blog their DAILY life challenges here.

I’ll start it off…I homeschool my son.  I took him to the bank today and met another family with autism that was also homeschooling their kids.  Is this a small world or what?  Is homeschooling on the rise among our families?  Hmmmm…why…..

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Yes we can!

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Oh beautiful for patriot dream that sees beyond the years   -”America the Beautiful”

Today, Veterans’ Day, we honor military service to our country.  We salute the present and former members of the armed forces and their families.  Many members of our Virginia autism community serve in the military. And all military families serve as well, by nurturing and supporting and carrying on with the responsibilities of daily life so that he or she can carry out her military service.  I am proud to be the daughter and niece of “greatest generation” veterans of the Army, Navy, and Air Force. Whenever I see someone in uniform, I shake hands and say, “Thank you for your service.” On the back of my car, next to the autism ribbon magnet, is a camouflage ribbon magnet that reads, “Land of the Free because of the Brave.” Long before I learned the term Positive Behavior Support, I knew that you can never say “Thank you” too often.

And “Thank you” to all who served a week ago, November 4, in the strongest voter turnout since another torch-passing election, that of 1960.  Voting is another crucial way in which we serve our country.  Special thanks go to all who worked to make Election Day go more smoothly, such as election workers, monitors, “get out the vote” volunteers, Starbucks and Krispy Kreme (free coffee and donuts!), media, food service, event planners and all the others who toiled in all their various capacities.

2008 was the first time that my son Clifford, age 12, didn’t go to vote with me.  He has autism and is still hospitalized for crisis stabilization, although I expect he will be discharged this weekend.  I can’t wait to take him to the Lincoln Memorial, the new pilgrimage site.

There are those that look at things the way they are, and ask, “Why?” I dream of things that never were, and ask, “Why not?”         -Robert F. Kennedy, paraphrasing George Bernard Shaw

My biggest “Thanks” go to all who are striving to improve the quality of life of families living with autism. This service to our state and nation strengthens families and communities and enlarges the pool of productive citizens. At AAC-VA, we work closely with existing autism groups to win key public policy victories for all persons on the autism spectrum. Thanks to all who testified at the statewide hearings, especially the parents.

But the job is far from done.  With your help, we can:

1.  Provide key feedback to our legislators about service delivery, including the appropriate state agency for serving our community. The Virginia General Assembly has directed its Joint Legislative Audit and Review Commission (JLARC) to evaluate the current availability and delivery of autism services in Virginia and recommend improvements.  This includes, but is not limited to: 

  • Factors that impact the ability of Virginians with autism spectrum disorders (ASD) to access services. 
  • Key services that are needed by Virginians with ASD but are generally difficult to obtain or unavailable.
  • Alternative means of receiving services that are unavailable or inaccessible through the public delivery system.
  • Adequacy of ASD service delivery system in providing the following:
    • Diagnoses of children with ASD,
    • Early intervention services to children under age three,
    • Public school and other services to children ages 2 to 22, and
    • Services to adults no longer served by the school system.
  • Adequacy of coordination of services for individuals with ASD over their entire lifetime, including
    • Transition from early intervention to public school services and
    • Transition from public school to adult services
  • Challenges faced by Virginians with ASD and their caregivers in navigating the current service delivery system.

 

2. On November 19, get Virginia’s Mandated Benefits Commission to recommend HB 1588 to the General Assembly and Governor for action in 2009.  HB 1588 will require private insurance companies to provide coverage for medically necessary evidence-based autism treatments and therapy, including Applied Behavior Analysis (ABA). To contact legislators:

http://tinyurl.com/5sy8ct

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JLARC Home for Autism hearing

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JLARC had a hearing this evening to discuss the state of autism in Virginia and what to do about autism.  The JLARC staff started it off and were especially interested in hearing about the parent’s viewpoints.  I was very comforted by that.  There were about 20 speakers, a majority of them parents.  Del. David Poisson from Loudoun spoke about HB 1588 and a new bill that will create ratio requirements for BCBAs in schools and incentive programs for teachers to take BCBA certifications.  This was new and I hadn’t heard of it before.

Most, if not all,  parents who spoke wanted a dedicated agency for autism.  They wanted focus on autism just because of the complexity of the disorder. Many parents also highlighted the benefits of ABA.

At the end, the JLARC staff asked a couple of questions about (1) is the challenge to find good people to take care of the kids only specific to autism or is there just a shortage of people who want to help (2) what is the issue related to getting speech services – is it because of lack of resources or lack of training on the part of school districts that the don’t understand why the kids need speech services.

I am sure I missed some..and ask Jim to fill int

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Hello world!

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Welcome to Autism Talk – a place to share and talk about things affecting autism families everywhere.

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