ASNC Day on the Hill

 

capitol-hill

This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy.

The Autism Society of North Carolina traveled to Washington, D.C., to participate in the Autism Society of America’s annual Day on the Hill for Autism Society advocates. Our goal in participating this year was to make sure that we voiced to Congress the critical need for services and supports for people of all ages on the autism spectrum, as legislators consider affordable health care access, Medicaid funding, and education issues.

ASNC Director of Policy Jennifer Mahan met with staff from our congressional delegation on Capitol Hill February 16 to discuss our concerns about affordable, comprehensive health care; Medicaid’s importance to people with disabling conditions; the need for adult services including employment supports and housing; and the right to a free appropriate education that meets the needs of students with disabilities.

Many of our current members of Congress are aware of autism issues, as well as the work of ASNC, based on their connections to constituents, families and ASNC’s long history of service in NC. Despite this familiarity, with so many changes happening on a national level it is more important than ever for all of us to make the connection between the policy decisions faced by our members of Congress and the impact of those decisions on the lives of people with autism and their families.

 

What You Can Do

  1. Learn who represents you and North Carolina in Congress.
    • You are represented by two US senators, Richard Burr and Thom Tillis.
    • You are represented by one member of the US House of Representatives, based on where you live. You can find out which US House member represents you by entering your street address on the THIRD map at the bottom of this page. (Please note that only the third map on this page is for Congress. The other maps are for the NC General Assembly.) Or you can call the Congressional Switchboard at 202-224-312 for info on your members of Congress.
  2. Tell your representatives about your experiences with autism, as a person on the spectrum, as a family member, as a professional, as someone who cares:
    • Call or email. Handwritten letters take weeks or months to reach Congress because of security measures. Calling or emailing is better. Better still is inviting your member of Congress to a local autism event or local service organization to see things firsthand.
    • Say you live in their district. (OR for your two senators, say that you live in NC).
    • Tell them the basics: who you are, how autism has affected you, why the issue is important, and why retaining or getting access to health care and education services has helped. Keep it to the equivalent of a page or a five-minute conversation. Short summaries are more likely to generate questions and interest in your issue.
    • Be respectful and positive, but firm. Ask for what you need. Some talking points are below. See our toolkit Advocacy 101 for more on working with elected officials.

 

Talking Points to Advocate on Issues that Matter

We know that health and disability issues can be complex. Below are some points that you can use in your discussions with Congress. MOST IMPORTANT is telling your story about autism and what is working or what could be improved with the help of your member of Congress. You don’t need to be a policy expert!

  1. The Affordable Care Act/“Obamacare”
    • The ACA should not be repealed without a plan for replacement that maintains or improves access to health care.
    • People with autism have benefited from parts of the ACA that require coverage for pre-existing conditions, the ability to stay on families’ health-care insurance until the age of 26, and the ability to buy affordable coverage on the health marketplace.
    • Autism is a complex disorder that often includes other physical and neurological conditions.
    • Any health-care package must include both rehabilitative AND habilitative services, mental health and addiction services coverage, behavior treatment, and prescription drug coverage.
    • Because of changes in the ACA, North Carolina has dramatically improved access to children’s health care, which improves access to developmental screening, early identification of autism, and early interventions.
    • Health care must be affordable and address high cost-sharing requirements and high premiums. Many families already struggle with added costs of raising a child with special health needs. Many adults on the spectrum are unemployed or under-employed, so age cannot be the only factor in determining health-care subsidies.
  2. Medicaid
    • Medicaid provides health-care services, long-term care services, and other supports that maintain health, functioning independence, safety and well-being to an estimated 500,000 children and adults with disabilities in North Carolina.
    • State Medicaid programs provide critical screening, early intervention, and home-based health programs for children with autism under Early and Periodic Screening, Diagnostic and Treatment (EPSDT). Early screening, diagnosis, and intervention are critical to preventing long-term disability.
    • NC is already doing a good job with its federal Medicaid funds: NC has used managed-care principles, prevention services, and health data to effectively manage Medicaid costs.
    • Do not cut Medicaid funding. Program cuts, along with block granting or per capita caps would hurt people with autism who rely on Medicaid for essential services. These costs get passed along to beneficiaries, families, and providers who are already doing more with less.
    • Additional cuts or restrictions on Medicaid funding could prevent NC from addressing the 12,000 people with developmental disabilities, including autism, on NC’s Medicaid waiver waiting list.
  3. Education
    • The Individuals with Disabilities Act (IDEA) and the Every Student Succeeds Act (ESSA) ensure that students with disabilities get the education they need and that schools are subject to a strong accountability system to ensure all students succeed.
    • IDEA is parent-driven: parents ask for evaluations, participate in planning, and can access procedural protections to ensure that their child is able to learn.
    • The federal IDEA act is not perfect, but it is assuring families that their child is able to attend school and get access to the curriculum in the least restrictive environment. It is CRITICALLY important to assure these rights for students with disabilities.
    • Schools are already challenged to meet the needs of students with disabilities: right now only about 15% of the funding for educating special needs students comes from the federal government though much more was promised. Please fully fund special education.

 

If you have questions about policy issues, please contact Jennifer Mahan, ASNC Director of Advocacy and Public Policy, at jmahan@autismsociety-nc.org or 919-865-5068.

 

 

 

Finding Children Who Wander

A new coalition of six national autism nonprofit organizations has been created to prevent wandering incidents and deaths within the autism community.  The collaboration, Autism Wandering Awareness Alerts Response Education (AWAARE), has launched AWAARE.org in a joint effort to raise awareness and provide information to caregivers, law enforcement, school officials and the medical community. Coalition member organizations are AutismOne, Autism Speaks, the Doug Flutie Jr. Foundation for Autism, the HollyRod Foundation, the National Autism Association (NAA), and Talk About Curing Autism (TACA).

“The AWAARE Collaboration will work to prevent wandering incidents and wandering-related deaths within the autism community through the use of collective organizational resources, and by establishing and monitoring objectives, guidelines, policies, and tools that will promote awareness, education, prevention and safety.”

To help parents and professionals, AWAARE has collected information to help prevent wandering, to recommend responses, to inform first responders, and to inform IEP teams of the dangers.  Please visit their website for details, as well as downloadable forms to prepare for your family.

Did you know that children with Medicaid might qualify for Project Lifesaver under the EPSTD (Early Periodic Screening Treatment and Diagnosis)?  If not, there are other grants that might help—the National Autism Association’s FOUND grant provided the funds for Orange County to begin serving families.  Contact your local police department to see if they have Project Lifesaver or another program to help find people with autism who wander.  Unfortunately, I have not been able to find such a list online; if I do locate one, I’ll post it soon.  Please let me know if you have such a list, and I’ll post the link!

Usually articles about this serious topic include links to news releases about children who have wandered and either been found or not…but I find them too painful to read, frankly.  We all know that having a child wander (regardless of the “child’s” age) is a terrifying event.  My imagination is too active, anyway—don’t need help with that.

If your local Police/Sheriff’s department doesn’t have a program to help wandering children, encourage them to get one!  Does your child have Project Lifesaver, LoJack SafetyNet, or some other program?  Does it work/do you like it?  Tell your story…

ASA: Amazing Sessions!

Two weeks ago, the Autism Society of America held its annual conference in Dallas, TX, and I was fortunate enough to be there—my first ASA conference!  What an amazing experience, with many different sessions occurring simultaneously.  I have to say that it was quite a thrill to be standing in line next to Carol Gray, to have Michelle Garcia Winner sign my book, to ride a shuttle bus with Stephen Shore, or to get coffee behind Cathy Pratt.  I admit it; I was star struck by these famous names in the autism world.  It’s also exciting to know that many of these luminaries either have already spoken at the annual conference of the Autism Society of North Carolina, or will in the future.  In 2011, for example, Stephen Shore and Brenda Smith Myles will both be presenting at ASNC’s Annual Conference, which will be in Charlotte (details to be posted on our website soon—save these dates now, March 18-19, 2011!). 

I was impressed that the ASA had representatives from President Obama’s administration there and by what they had to say.  It was reassuring for me to know that one of Obama’s advisors has a child with autism, for example (Mike Sherman); to see that the Special Assistant to the President for Disability Policy is legally blind (Kareem Dale); and to know that the head of the Administration on Developmental Disabilities (Sharon Lewis) has a daughter with a developmental disability.  I do not apologize for bringing politics into this: President Obama is the first presidential candidate in recent memory to have highlighted disabilities in his campaign and to have a written policy on autism. 

There were so many great sessions that I learned from—too many to write about today.  More later on what I learned…In the meantime, take a look at our bookstore, which has books authored by many of the above-mentioned autism experts.

Autism, Medicine, and Media

Now that 2010 has rolled in, there seems to be more autism-related research published that’s getting some attention in the news.  When the previously embargoed autism rates were announced on the Friday afternoon before Christmas, it didn’t receive much notice in the media, aside from catching the statement that officials were still puzzled about whether there is a true increase in children with autism.

Autism advocacy organizations, such as the Autism Society of America, are calling the two reports published in Pediatrics “significant” and ‘confirming’ what families have been saying to doctors for years:  some children have gut issues that cause pain and affect behavior commonly associated with autism.  Yet, what I saw were more headlines about how this study confirmed that special diets for children with autism don’t work.  That is not what this study actually said.

Some in the autism community criticize that no one on the panel from which the two new studies emerged has actually published on bowel disease in children with autism.  Researchers such as the ones listed below were not included:

Balzola F, Daniela C, Repici A, Barbon A, Sapino A, Barbera C, Calvo PL, Gandione M, Rigardetto R, Rizzetto M. Autistic enterocolitis: confirmation of a new inflammatory bowel disease in an Italian cohort of patients. Gastroenterology 2005:128 (Suppl. 2);A-303

Balzola F et al.  Autistic Enterocolitis in childhood: the early evidence of the later Crohn’s disease in autistic adulthood? Gastroenterology 2007;132:suppl 2, A 660.

Gonzalez L, Lopez K, Martınez M etal. Endoscopic and histological characteristics of the digestive mucosa in autistic children with gastrointestinal symptoms. Arch. Venezolanos Puericultura Y  Pediatria 2006;69;19–25

Furlano R, Anthony A, Day R, Brown A, McGavery, Thomson M, et al. Quantitative immunohistochemistry shows colonic epithelial pathology and gd-T cell infiltration in autistic enterocolitis. J Pediatrics 2001;138:366-372

Torrente F, Machado N, Ashwood P, et al. Enteropathy with T cell infiltration and epithelial IgG deposition in autism. Molecular Psychiatry. 2002;7:375-382

Torrente F., Anthony A., Herushkel RB., M Thomson., Ashwood P., Murch SH. Focal-enhanced gastritis in regressive autism with features distinct from Crohn’s and helicobacter pylori gastritis. Am. J. Gastroenterol. 2004;598-605

Ashwood P, Murch SH, Anthony A, Pellicer AA, Torrente F, Thomson M, Walker-Smith JA, Wakefield AJ. Intestinal lymphocyte populations in children with regressive autism: Evidence for extensive mucosal immunopathology. J.Clin. Immunol. 2003;23:504-517

Ashwood P, Murch SH, Anthony A, Hayes C, Machado MP, Torrente F, Thomson MA, Heuschkel R, Wakefield AJ, Mucosal and peripheral blood lymphocyte cytokine profiles in children with regressive autism and gastrointestinal symptoms: Mucosal immune activation and reduced counter regulatory interleukin-10. Neuroimmunology. 2006;173;126–134

Krigsman A, Boris M, Goldblatt A, Stott C. Clinical Presentation and Histologic Findings at Ileocolonoscopy in Children with Autistic Spectrum Disorder and Chronic Gastrointestinal Symptoms. Autism Insights. 2009:1 1–11

Horvath K and Perman JA, Autistic disorder and gastrointestinal disease, Current Opinion in Pediatrics 2002;14:583–587.

Melmed RD, Schneider C, Fabes RA, et al.: Metabolic markers and gastrointestinal symptoms in children with autism and related disorders. J Pediatr Gastroenterol Nutr 2000;31:S31–S32

[1]Horvath K, Papadimitriou JC, Rabsztyn A, Drachenberg C, Tildon JT. Gastrointestinal abnormalities in children with autistic disorder, J Pediatr. 1999;135:559-63.

[1]Sandler RH., Finegold SM., Bolte ER., Buchanan CP., Maxwell AP., Vaisansen M-L, Nelson MN, Wexler HM., Short-term benefit from oral vancomycin treatment of regressive-onset autism. J. Child  Neurol. 2000;15:429-435

Parracho H., Bingham MO., Gibson GR., McCartney AL.  Differences between the gut flora of children with autistic spectrum disorders and that of healthy children. Journal of  Medical Microbiology. 2005;54:987-991

Balzola F, Barbon V, Repici A et al. Panenteric IBD-like disease in a patient with regressive autism shown for the first time by the wireless capsule enteroscopy: another piece in the jigsaw of this gut–brain syndrome?Am.J.Gastroenterol. 2005;100;979.

Krigsman A, Boris M, Goldblatt A, Stott C, Clinical Presentation and Histologic Findings at Ileocolonoscopy in Children with Autistic Spectrum Disorder and Chronic Gastrointestinal Symptoms. Autism Insights, 2010: 2  1-11.

It is difficult for me to understand why potentially important information for the families of the now 1 in 70 boys is virtually ignored by the press.  If they only highlight erroneously about how diets to treat autism don’t work, and come up against popular actresses, perhaps that guarantees ratings or views.  I don’t know.

What I also wonder is where was this information when my three boys were vomiting every day?  Why has the medical community taken this long to assume autism is behavioral, mental, but not physical?  Bandages have been blindly handed out when wounds can be healed.

Who has the disorder in communication?  The medical establishment continues to be protected from embarrassment.  The media continues to grab for advertising dollars while appearing irresponsible in light of this huge health crisis.  Children continue to suffer.  Meanwhile, our national “grass roots” autism advocacy is unfortunately getting thicker.

LeFreak?

When discussions about blogging for the Autism Society of North Carolina began, Maureen Morrell, friend and Director of Government and Community Relations, said, “We see so many families now with more than one child with autism.  You have a unique perspective.  Why don’t you write about it?”

Ten years ago, when the three boys were first diagnosed, I felt strange.  I’d go to various autism support groups and cringe when the introduction circle came around to me.  “Hi my name’s Alison I have three boys with autism ages…”  Inevitably, the room would let out a gasp.  I’d leave more worried than when I came and stopped attending for a while, unable to shake off feeling somehow excluded, and like a- well,…a freak.

Thankfully, I’m over feeling embarrassed.  And before anyone gets upset, let me just add that I have never been embarrassed by my children.  The negative feelings always came from how I felt I measured up as a mom.  When you have three with special needs, you can’t do enough.  Like most parents, I suspect, I tend to feel overly responsible for everything.  Since then, I‘ve also met and heard of many more families impacted more than once by autism.

How many of the 50,000-plus families in North Carolina have more than one child with autism?  How many of that 1% of our nation’s children (the ‘new’ rate of autism) are in families with multiple children with autism?  The short answer:  We don’t know.  Anecdotally, we know we have more than we used to, but then again, we certainly have more children with autism than we used to.  I began my quest to find these answers.

I started in North Carolina with TEACCH.  It’s a bit busy over there (diagnosing more kids!) and they can’t give me numbers right now.  Next, I emailed the North Carolina Department of Public Instruction, which led me to the people in charge of the epidemiology study at The University of North Carolina at Chapel Hill, the North Carolina Department of Health & Human Services, and Autism Speaks.  I haven’t received any responses yet.

The Autism Society of America doesn’t think there is a number.  However, Catherine, in the Information Department said she would recommend to her supervisor they start taking this data, at least with their incoming calls.  Kudos to Catherine and ASA!

By Friday afternoon, with no hard, cold facts, I’m like a dog with a bone and getting concerned that few are thinking about families like mine.  A spotlight is needed on this number.  Autism is expensive and families are going belly-up financially, emotionally, and physically.  If there is a true increase within families, this also affects agencies and organizations and impacts how supports and services are delivered.

We can’t all be saved by “Extreme Home Makeover”.  Is it our last resort to be featured on the Discovery Channel in order to tell the world we have an autism problem?  Individuals and families need supports and services in spite of budget cuts.  People with autism need housing and employment as they age out of school.  Just because Oprah doesn’t say it, doesn’t mean it’s not real.  And, as I would later confirm, just because the CDC doesn’t highlight it, it doesn’t mean families like mine don’t have some serious issues.  Note to self:  Does anybody really care?

Dr. Andrew Wakefield cares.  After graciously replying that their database at Thoughtful House contains the very information I seek, he added that he would have their IT guy look into what percentage of their patients are members of families with more than one child with autism.  This looks promising…I’ll keep you posted.

I was told by friends there are all kinds of genetic and behavioral research done on families with more than one child with autism.  (Genetic studies have done bupkes for my family.)   Google “multiplex autism in families”.  This gave me pause.  I didn’t know there’s a name for families like us.

We’re a Multiplex Autism family, like a movie theatre.

The Centers for Disease Control and Prevention do this kind of counting thing all day long.  Coffee consumption levels in Atlanta have got to be high. The CDC should know what percentage of children with autism are in (multiplex!) autism families.  I phoned and was connected to a real person who efficiently took down all my vital stats, asked when I needed the information, and responded that someone will contact me by email.  Here’s what I got.  Notice how I’m succinctly summed up as a Media-Inquiring Normal Blogger.  Love the “Normal”.  This is the CDC; pay attention, folks:

Subject: FW: MI-Normal-Blogger-Tracking families w/ 1+ autistic childre

Date: Fri, 6 Nov 2009 14:22:45 -0500

From: Amanda (CDC/CCHIS/NCHM)

To: Alison Davis

Hi Alison,

The CDC does not currently have any studies looking at families with more than one child with autism. However, this is definitely a subject of interest and I know quite a few papers have been published on this topic. You may want to do an online search to see if you can find further information.

I hope this helps!

Amanda

Questions for CDC: Alison is working on a blog for the Autism Society of North Carolina and in her particular state, they are seeing an increase in families that have more than one autistic child. She would like to know if CDC tracks families that have more than on child with autism.

Information Provided by CDC:

View Inquiry Details

From: Alison Davis

Sent: Friday, November 06, 2009 2:41 PM

To: Amanda (CDC/CCHIS/NCHM)

Subject: RE: MI-Normal-Blogger-Tracking families w/ 1+ autistic childre

Thanks, Amanda, for your quick reply.  I’m not looking for genetic studies at this time; I was just hoping for numbers.

Alison

RE: MI-Normal-Blogger-Tracking families w/ 1+ autistic childre‏

From:            Amanda

Sent:            Fri 11/06/09 2:45 PM

To:            Alison

I see, you want to know how many families have more than one child with autism?  I don’t think I have ever seen that information or a study done particularly on that topic.

Sorry!

Amanda

So there you have it.  The freaky thing is, I know you families are out there because I know I’m here.  If you have three or more children with autism, there’s a support group run by my friend Michele Iallonardi.  Autismx3ormore@yahoogroups.com has almost 40 members across the country and Canada.  As you can imagine, it’s not very active.  Most parents of three or more children with autism are covered up.  But if a member posts a call for ideas or help, we jump right in and hold you up.  Count on it.