One Small Step For Awareness, One Giant Leap for Coverage

Mr. John Burress From Winston-Salem Provides Testimony to NC Senate Health Committee

Today I witnessed in awe a community of diverse people from across our state come together in unity, with standing room only.  Although clapping is not typically the protocol for legislative meetings, the North Carolina Senate Health Committee Hearing on SB 1265, Treatment of Autism Spectrum Disorders, was subjected to enthusiastic applause after every honest and highly personal testimony by a grandfather, three mothers, and two fathers.  Our sponsor of the bill, Senator William Purcell, even joined in after a while!

After the hearing, Tre Benson, the devoted father from Lee County, echoed this same sentiment:

I thought those of us parents asked to speak would be able to keep it together, just the facts, cold cut and dry but when any of the speakers mentioned their child, personalized their point, we all instantly had those “walk a mile in my shoes” magically slipped onto our feet, we felt the heartache and love fill the room with tears. I saw doctors in their white coats with faces wet from the water streaming down their faces. It was a blessing to have seen strangers connect in such a way.

The Autism Society of North Carolina has been tirelessly working at the Legislature for this bill, coordinating with the autism community throughout the state, in addition to graciously hosting a lunch for all who attended afterward at their Raleigh office.  Autism Speaks also deserves kudos for drawing families to the hearing and especially for Lorri Unumb, Senior Policy Advisor and Counsel, who gave a pretty good impromptu class in what I’d call “Autism 101” in response to legislators’ questions about the differences between Pervasive Developmental Disorder-Not Otherwise Specified, Autistic Disorder, Autism, Asperger Syndrome, and Autism Spectrum Disorders.

We are far from claiming a victory for autism health insurance reform.  The Senate Health Committee did not vote today, as they are waiting for the fiscal note to be drawn up.  Stay tuned to ASNC and Autism Speaks e-alerts.  But from this day forward, know that when we work together, our loved ones benefit greatly.  I was honored to witness it with my own tear-filled eyes.

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We Are A Coalition

ADVOCACY DAY & POPCORN RALLY JUNE 1, 2010 8 AM TO 2 PM!

Do you ever wonder how things get done for our loved ones?  The Autism Society of North Carolina is a member of The Coalition, containing approximately 40 members from the Mental Health, Developmental Disabilities, and Substance Abuse Service communities throughout the state.  Last year I attended the Advocacy Day & Popcorn Rally and spoke to my legislators about better funding for services and supports for people with developmental disabilities, including autism.  On June 1, 2010, the Autism Society of North Carolina will be at the Registration Table again to welcome us.

Here are the details.  It is vital to see you there, having your say!

Advocacy Day & Popcorn Rally

Sponsored by The Coalition

TUESDAY, JUNE 1, 2010 (day after Memorial Day)

ADVOCATE FOR BETTER FUNDING FOR MENTAL HEALTH, DEVELOPMENTAL DISABILITIES & ADDICTIVE DISEASE SERVICES AND SUPPORTS

at the…

LEGISLATIVE BUILDING,

16 West Jones Street, Raleigh, 27601

Registration will open at 8 am on the back portico of the Legislative Building. Participants will receive information on the day’s legislative committee meetings, the current budget proposal and begin to visit with legislators.

Advocacy trainings will take place in the Legislative Building Auditorium (third floor) beginning at 9 am. The short trainings will be on ways to effectively communicate your message to legislators.  Volunteer will also be on hand in the auditorium with tips & techniques for making the most of your legislative visit.

Popcorn will be available on the portico beginning  at 11 am. Please note that lunch will not be provided.

PARKING:  Passengers in vehicles of any kind must be dropped off at the LEGISLATIVE BUILDING. The driver will then be able to park the car or van at the state fairgrounds (GATE 9) and get bussed to the Legislature.  Shuttles will run from 8 am until 2 pm.

For more information, visit The Coalition or contact Elizabeth Cloud at ncpaelizabeth@mindspring.com or Erin McLaughlin at emclaughlin@mha-nc.org.

My Lunch with Temple

Dr. Temple Grandin and momof3au

We faced each other across the linen-laid table; her police-siren blue eyes locked with mine.  We were smirking and guffawing together over the propensity of the English language for visual thinkers.

“Temple, I’ve been thinking about working memory and autism.  You see…”

“Oh, I have a horrible time with working memory!”, she retorted.  And off she went, telling me about the redesign of a packing plant and how it took her 12 visits to get the sequence of steps down in her mind properly before she could work on the project.

Okay, maybe it wasn’t just me and Temple Grandin dining, but Susanne Harris, Temple, a few talented service providers and agencies, a handful of awesome Duke research scientists…and me.

How did it happen that I should be one of the fortunate few?  If the Rock Star of the Autism World happens to be honored at Duke University, which happens to be in Durham, North Carolina, and you just happen to have three children with autism living in Durham, you may just happen to stick out like a sore thumb and luckily happen to be included.  And what a happening it was.

Highly acknowledged for her accomplishments in the fields of animal behavior, humane livestock facilities design and autism, Temple Grandin is, well…Temple Grandin IS.   Aside from being simply brilliant, she’s a very funny woman.  I think I may have slightly colored her well-attended public presentation by her drilling me with questions about my boys’ accomplishments, current interests, and the challenges I now face in raising three teenagers on the autism spectrum.  Negative examples of too-narrow interests such as heavy metal and sex peppered Temple’s speech as she wove her thoughts on how to encourage skills in people with autism for the work force along with her perspectives on engineering, animal behavior, and brain function.  Somehow, in a style unlike anyone I have ever met, she made it all work beautifully.

Temple Grandin, one of Time’s 100 Most Influential People, has also been closely following media reports on the oil spill in the Gulf of Mexico, her latest deep and focused interest.   She punctuated her comments at the end by saying if she was in Congress, she wouldn’t want to hear from the president of BP, she’d want to talk to the engineers!  I say Temple Grandin for Congress.

Did you see HBO’s Temple Grandin?  If you haven’t or even if you have, the DVD will finally be available on August 17th, 2010.  You can pre-order it now through ASNC by calling 1-800-442-2762, dial Extension 1130. She thought they did a fabulous job (I did too).  I also hear Temple is again invited to Durham by Duke next year, but this time by Women’s Studies.  They’ve reserved a big hall.  I know it will be filled.

Our host for my lunch with Temple was the Duke Institute for Brain Sciences (DIBS).  And Dr. Fitzpatrick?  I hope you’re reading this.  This is my formal note of thanks.  THANK YOU!  Thank you for giving me a life-changing experience, but now I’ve got to get to work on Temple’s advice for my boys.  Like Temple’s mom, I’m going to make it happen.

Monday, May 10, 2010: THE PLAN

Legislative Office Building, North Carolina General Assembly, Raleigh

Come to the last meeting of the North Carolina General Assembly Joint Study Commission on Autism Spectrum Disorders on Monday, May 10, 2010 at 1:00 p.m. in Room 643 of the Legislative Office Building in Raleigh!

The Autism Society of North Carolina, in partnership with Autism Speaks, has been diligently working at the Legislature to get an autism insurance bill for our loved ones introduced in the upcoming legislative session.

You will make an important impact by your presence at this meeting to hear recommendations by committee members.  A strong attendance by the autism community will encourage the committee members to recommend introduction of the bill into the upcoming legislative session.

Here are driving directions with parking suggestions.  Allow yourself ample time to park and walk to the Legislative Office Building, affectionately termed “L-O-B”.  This building is not to be confused with the Legislative Building (“LB”) on Jones Street, which faces the dinosaurs in the North Carolina Museum of Natural Sciences…

Legislative Building, North Carolina General Assembly, Raleigh

If you’ve never attended a meeting or hearing at the General Assembly, there is a pedestrian bridge (which you can see a bit of in the first picture) connecting the Legislative Building to the 3rd Floor lobby of the Legislative Office Building.  The Legislative Office Building’s 3rd Floor lobby is where the Autism Society of North Carolina will have a sign-in table at 11:30 a.m. to meet you, answer questions, and assist you in attending the 1:00 meeting.  Please note there are strict rules governing lobbying at the General Assembly, so do not bring signs into the building with you.

If you plan to attend, please click here to check the NC Legislative calendar to confirm the meeting room, as last-minute room changes sometimes occur.  If you are unable to come, you can listen to the meeting by clicking here and then click on Room 643.

This last meeting of the Study Commission will be the first in many ups and downs of the legislative process.  ASNC asks that you halt writing committee members for now, but if you haven’t told us your story, contact us at autisminsurance@autismsociety-nc.org.  Send your name, address including county, and best phone number and email address to reach you if your child has been denied treatment coverage through your insurance company, or if you are a small business owner and support autism insurance coverage.

I do hope you may be able to come and witness history being made.  I look forward to seeing you!

Battle of Words & Numbers: Autism Insurance

There was no People First language spoken last Thursday at the second meeting of the Joint Study Committee on Autism Spectrum Disorder & Public Safety.

The first meeting, organized jointly by the Autism Society of North Carolina and Autism Speaks, clearly established a dire need for autism insurance coverage.  This last meeting was the industry response.  Testimonies were provided by the insurance industry and a member of the Chamber of Commerce to stop possible mandated coverage of autism in North Carolina.  Aside from the presentation with power point given by Oliver Wyman Actuary Consulting Inc. (a great member of what I call “Team Autism“- brought by the Autism Society of North Carolina), the other three testimonies (“Team Business“) were without the benefit of documentation (ex. citing their own actuarial report, but not providing it to the committee).

There was a wide disparity between the numbers reported by Team Autism and Team Business.  Members of the committee requested a copy of the report that Blue Cross Blue Shield of North Carolina cited.  Translating these numbers into actual increases in costs of insurance premiums also varied greatly.  Brows furrowed as legislators and committee public members attempted to understand the math.

As expected, Team Business came down hard and heavy against having the state mandate coverage of Autism Spectrum Disorder.  Lorri Unumb from Autism Speaks, also brought to the meeting by the Autism Society of North Carolina, ably refuted arguments put forth, such as concerns that “no codes existed” to file claims for treatments and interventions.

Each of the Team Business speakers prefaced the nay-saying by acknowledging how difficult autism can be for families, and then immediately launched into how bad autism insurance would be for everyone, ignoring these families altogether.  As with many issues that families affected by autism face, an acknowledgement of difficulties is as helpful as a cheap, generic band-aid.  It soon falls off.

Discussion of ABA (Applied Behavior Analysis) was grossly exaggerated.  Calling all behavioral interventions educational, not medical, along with describing them as 40 hours a week of intensive one-on-one drills with ill-trained college students teaching  “sitting still”, belittled all evidence-based interventions for individuals with autism.  Autism is not a learning disability.  Autism is the most pervasive of developmental disorders, affecting every area of a person’s life.

Any intervention when measured only by poor treatment examples, without fidelity to true implementation, would hardly credit any method.  ABA is a broad spectrum of interventions which includes, but is not limited to:  Discrete Trial Training, Positive Behavior Supports, Verbal Behavior Analysis, and antecedent-heavy methods such as Structured Teaching, birthed out of the long-respected UNC Division TEACCH.

The clincher was that Blue Cross Blue Shield does not consider ABA evidence-based!  Note all above methods have numerous peer-reviewed evidence in their favor.

Another “Oh, tell me you did not say that!” comment by Dr. Genie Komives, Vice President and Senior Medical Director for Blue Cross Blue Shield of NC:  She warned that the prevalence of ASD would go up because parents would more likely seek an ASD diagnosis for their child if they knew comprehensive services existed!  She also noted autism was certainly an important issue for society, but one that the insurance industry should not have to shoulder.

Both insurance providers stated that they indeed already cover autism in their plans:  diagnostic assessment, prescription psycho-pharmaceuticals, and speech and occupational therapies.  In other words, they’ll give your child the label of autism and some drugs to manage their behavior, provide up to 30 30-minute speech sessions or a total combination of 30 speech & occupational therapy sessions and then good luck to you.

Services and supports are being cut by Health & Human Services.  Education of children with autism continues to flounder in every county and state.  Now insurance providers attempt to block coverage of what most certainly is a civil rights issue.  There appears to be no place to turn to get our children the comprehensive help they need.

The next meeting on autism insurance coverage will be scheduled soon.  Subscribe to meeting notices to receive email updates of the schedule.  Don’t leave your state’s decision-making process for what directly impacts your child up to a roomful of people.  Come to the meetings.  The Autism Society of North Carolina staff are there to greet you and answer questions.

Autism insurance coverage is heating up in North Carolina.  We need you to stay involved more than ever.  We need you to stand up for your child.  We need you.

Birds, Bees, ASDs

Inclusion is a process of identifying, understanding and breaking down the barriers to participation and belonging. - Early Childhood Forum, National Children's Bureau, UK, 2003

Support individuals to create meaningful interpersonal relationships, healthy sexuality and personal safety.  -Advancing Futures for Adults with Autism Preliminary Report, 2009.

The subject of teaching healthy sexuality is a delicate matter incorporating social, cultural, and religious mores.  Never the less, it is imperative that parents, advocates, educators, and other professionals exchange information and collaborate on how best to serve the needs of individuals with autism.  Honest communication starts in the home, but families need support and resources based upon collaboration.

My three sons are riding the crest of the huge birth cohort with autism.  They are smack in the middle of adolescence and puberty.  Until recently, I thought my older two (14 and 12) were included somewhat successfully in school Health classes, supplemented with home discussions and additional resources.

My eldest seemed to understand what was covered, and read  What’s Going on Down There?, given to him at home.  We had no problem broaching this subject, as he is an avid asker of questions, anytime and anywhere.  I remember him loudly stating he wanted to “talk about S – A – X”.  Aside from spelling, his difficulties in learning about sexuality lie in the abstraction and complexity of social relationships.

But my middle son!  One recent morning, he was playing a video game.  As he deftly maneuvered the game controls, he asked, “Hey- Mom, what’s an STD?  What’s masturbation?”  He heard these words in 7th Grade Health.  I asked him if they went over these words in class and he said, “Yeah, but I don’t get it.”  I explained the definitions briefly, wondering what else he wasn’t “getting”.  He and his dad went over it again later.  I then realized our teaching about sexuality both at home and at school was primarily language-driven.  I decided to include him as I planned to teach my youngest.

The youngest is in 5th Grade.  We knew it was time to deal with this issue.  Also, a permission slip to attend the 5th Grade Health class came home in his backpack.  Although my son is a year older than his peers, he is much younger emotionally and has language delay.  Because we knew he would be confused and would need concrete social rules about behaving and discussing this subject, we decided to not include him in the class.

However, we wanted our son to have access to the same information as his classmates.  We asked the school in writing to give us the curriculum:  a text, handouts, class notes, or lesson plans.  The picture at the top shows all that we received from the school.  What were we supposed to do with this?  Proctor and Gamble may be profiting from this, but my son certainly has not.

I put out a request for help by email,  list serves, Facebook; I even Tweeted it.  I am thankful for the many parents and few dedicated professionals who responded, from Chantal Sicile-Kira (a keynote speaker in April) to Elizabeth Byars, to John Thomas, to a mom of two girls with autism right in my town.  I’m especially grateful to Dr. Mary Beth Van Bourgondien, who publishes research and trains parents and professionals on understanding and teaching sexuality to adolescents and adults with autism.  If a resource or strategy was mentioned more than once, I included it in these lists drawn from the many responses and additional questions generated:

Autism or Special Needs-Specific Resources

  1. Adolescents on the Autism Spectrum, Sicile-Kira
  2. Growing Up: A Social and Sexual Education Picture Book for Young People with Mental Retardation, Shea and Gordon
  3. Taking Care of Myself, Wrobel
  4. Autism-Asperger’s & Sexuality: Puberty and Beyond, Newport and Newport
  5. Asperger’s Syndrome and Sexuality:  From Adolescence through Adulthood, Henault
  6. A 5 is Against the Law:  Social Boundaries:  Straight Up!, Buron
  7. Teaching Children with Down Syndrome about their Bodies, Boundaries, and Sexuality, Couwenhoven
  8. The Hidden Curriculum, Myles
  9. Autistics’ Guide to Dating, Ramey and Ramey
  10. Aspergers in Love, Aston
  11. Establishing a sexual identity.  Case studies of learners with autism and learning difficulties., Autism 2009; 13(6):551-66.
  12. High-Functioning Autism and Sexuality:  a Parental Perspective., Autism 2005 Jul;9(3):266-89.

Helpful General Resources

  1. It’s Perfectly Normal, Harris and Emberley
  2. What’s Going on Down There?, Gravelle
  3. My Body, My Self for Girls, Madaras and Madaras
  4. My Body, My Self for Boys, Madaras and Madaras

Strategies

  • Break down the information into smaller sections.
  • Present the information visually.
  • Spread the teaching out over an extended period of time.
  • Halt to visually address unexpected confusion or questions.
  • Provide written detailed, concrete rules on social behavior and conversations.
  • Make manipulatives from blank business or index cards for sorting into categories:  okay, not okay, unsure, etc.  On these cards, provide examples of specific social situations to gather information on what needs teaching.
  • Write a social story with pictures and/or words about where and when it is permissible to touch oneself if this is an issue.
  • Make a “Hug List” using names and/or pictures:  Teach child to give and accept hugs and kisses only from people on their Hug List.

POLICY TO THE PEOPLE!

The man sat in front facing us.  He spoke with casual ease, immediately making us feel like we’re already friends.  “How many of you live in an apartment, condo, or home that I can get in?  Show of hands?”  I looked around.  Two hands were raised.  “Guess who’s not coming to dinner!”, he quipped.  Our speaker then shared some of his experiences and at the end of his talk, he asked if we would think about the next time we were going to rent, build, or buy a home.  Would it be a structure that could include him and others in wheelchairs?

Mark Johnson, Director of Advocacy for The Shepherd Center and founder of ADAPT, was one of four national speakers I heard last weekend.  Mark leads by example, showing how one person can make a difference for people with disabilities.  As a newly accepted 2010 North Carolina Partners in Policymaking trainee, I’m learning to change the world for people with developmental disabilities.  The first place I’m starting is in my home.

Mind mapping, brainstorming, a mind-blowing history of disability, public speaking, tales of civil disobedience with intent, landmark litigation and legislation, table swapping, and note writing etiquette were just some of the topics we discussed, or practiced.  (We just talked about the civil disobedience part!)  And that was only the first session.

Twenty-eight advocates and parent advocates selected from across the state gathered in Raleigh to begin this intensive advocacy training.  It was the first whirlwind weekend in a series of eight monthly trainings.  Modeled after Minnesota’s successful program, NC Partners in Policymaking produces graduates who advocate at every level of government and who create and participate in community initiatives that promote inclusion.

Funded by the North Carolina Council on Developmental Disabilities, NC Partners in Policymaking is part of an international program and has a mouthful of a mission statement.  What it boils down to is this:  The people who need and use services should know how to work with leaders to decide policy that affects them, and then go out and do that. The North Carolina Council on Developmental Disabilities is “building bridges to community”.  NC Partners in Policymaking is building the builders of these bridges.

When we speak of disability rights, we’re not only talking about services and supports.  The issue is not about disability; we’re talking about people.  The issue is civil rights.  This hit me hard; it reminded me of what my teenage son said.  “I’m not a woman or in a wheelchair, and I’m not African-American.  But I’m still discriminated against because I have autism.”  He was speaking about social acceptance in high school, but I wonder if someday he’ll want to be a candidate for NC Partners in Policymaking.  I hope he and others in North Carolina will continue to have this incredible opportunity to experience what I’m learning.

The fact that society still talks about Inclusion as an issue only highlights how much work still needs to be done.  Disability issues are civil rights issues.  I want to hear your stories of how the civil rights of people with autism have been violated.