Autism Insurance Update: Insurance Committee Hearing for H 498 Scheduled!

House Bill 498 that would require group insurance plans and the state health plan in North Carolina to cover treatment of autism is scheduled for a House Insurance Committee hearing on Tuesday May 14, 2013 at 1PM in room 1228/1327 of the Legislative Building. The House bill would ensure that plans for companies that operate in North Carolina and that are required to follow North Carolina insurance laws would cover diagnosis and treatment of autism, including applied behavioral therapy. Thirty-three states now have similar laws requiring autism insurance coverage. You can read Autism Society of North Carolina (ASNC) CEO Tracey Sheriff’s opinion piece about the law  as well as parent Beverly Moore’s op-ed. The Insurance Committee hearing is the first step in passing the bill in the NC House; if it receives a favorable report (majority vote yes to move it forward) it will likely go to an Appropriation Committee and then to the House floor for two votes. Once it passes the House, we move on to advocating for it to pass in the NC Senate.  It must pass both NC House and NC Senate chambers and be signed by the Governor to become law.

If you are signed up for ASNC’s monthly e-newsletter, and you live or work in one of the districts represented by a NC General Assembly House Insurance Committee member, you should already have gotten an alert from ASNC asking for your help. (If you have not updated your email address with us, please sign up so we can update your information.)

We are asking that constituents (meaning you live and or work in their legislative district) contact their own legislators who sit on the House Insurance Committee and ask for their support on H498. Please do not email or call every member of the Insurance Committee.

• Look up your NC House of Representatives Legislator using the district map (it is the one at the very top).
• Look up the list of Insurance Committee members to see if your Legislator is on the committee.
• If they are, please email or call and ask for their support on H498. Share a short version of your story about how autism has affected you, your family or those you care about.

If your NC General Assembly House Member does not sit on the Insurance Committee, you may still contact them to ask for their support. Look up your NC House of Representatives Legislator.

• Please look at the list of sponsors for H498 before you take any action.
• If your House member is a co-sponsor, you can thank them for their support on H 498 and ask that they continue that support throughout the process of getting the bill passed.
• If your House member is not a co-sponsor, ask that they support H 498 when it comes up for a vote.
• Share a short version of your story about how autism has affected you, your family or those you care about.

If you are considering  attending the House Insurance Committee hearing next Tuesday, you should know a few things before going to the Legislature:

• Your advocacy has helped us get to this point, regardless if you can attend that day or not.
  • Personal contact with your legislators in person, by phone, in letters and in emails is still the best way to be an effective advocate and we thank you for all your efforts on this issue and all the others that help those on the autism spectrum and their families.

• The day of the hearing is not a day to protest or to “storm the gates.”
  • Signs and posters are not allowed in the legislative building. While many of us are frustrated about the length of time it has taken to pass the bill in North Carolina, expressing that frustration will not help the cause. Respectful and courteous behavior, even in the face of disagreement over the issue, is the best way to represent our issues.

• The bill may or may not be heard the day it is put on the committee calendar.
  • Sometimes bills get put on the committee’s agenda, but get moved to another day. This is normal during busy legislative weeks and does not mean there is no support for the bill or that the bill will not pass.

• Room 1228/1327 where the House Insurance Committee meets is a small narrow room in the legislative building with about 80 seats in the audience.
  • It will be crowded with legislators, staff, reporters, lobbyists, and other people interested in this bill and in other bills on the agenda. Please be sure to make arrangements for childcare as this is not a good day to bring your child(ren).

• The audience at the committee meeting *will not* be invited to speak about the bill.
  • In fact, audiences at the legislature cannot clap, shout, or otherwise comment loudly on the proceedings. Your opportunity to speak to your legislators about the bill comes before or after the meeting. If you want to try and arrange a meeting, please contact Jennifer Mahan at the Autism Society of NC or contact your legislator directly. Please know you may not be able to get a confirmed meeting at the last minute and meetings frequently change.

• The Insurance Committee room has bad sound.
  • You may have difficulty hearing the questions or responses because the room is not set up well for sound. Legislators at the front of the room can hear each other and hear the presenters, but there may be times when you cannot hear.

• Legislators are not experts in autism.
  • You have done a lot to educate them about autism over the last few years (and decades) but they may ask questions or make comments that surprise you. The speakers may or may not fully address the issues in the short time to discuss the bill. This is an opportunity to continue to educate people after the meetings.

• Please look at the Legislative website citizen’s guide and other information about the downtown area in order to locate the building and public parking.
  • Parking sometimes fills up during the day because the Legislative building is located near several museums. Most public lots are two dollars an hour or more for parking and take credit and cash. Please be sure to park legally – Raleigh tickets and tows regularly.

Reminder: The NC General Assembly (NC House and NC Senate) is responsible for passing laws in North Carolina. Congress (which also has a House and a Senate) passes laws for the entire country, including North Carolina. Some insurance plans, such as those for those for multi-state or multi-national companies, those that are self-funded, and those for Federal employees, are the responsibility of the Federal Government and Congress. The NC General Assembly cannot pass legislation changing those insurance requirements. If you have questions about who represents you in the General Assembly or in Congress, or questions about this or any public policy issue, please contact Jennifer Mahan, Director of Advocacy and Public Policy at the Autism Society of North Carolina. Or you can post your questions in the comments section below.

Autism Health Insurance Reform

The following column was written by Autism Society of North Carolina CEO Tracey Sheriff.

State lawmakers have an opportunity to right an unfortunate injustice this legislative session. Currently in North Carolina, the nearly 60,000 individuals with autism and their families face unfair financial hardship because of an inequality in their health insurance coverage.

To correct this inequality for North Carolina families, House members from both sides of the aisle have introduced House Bill 498 which requires private health insurance companies and the North Carolina State Health Plan to cover the diagnosis and treatment of autism.

Thirty-two states currently require autism insurance coverage, while eight more are considering similar legislation. This legislation has afforded thousands of families in other states access to autism treatment that until now was only available in select corporations and through the federal government’s TRICARE insurance program. The 40 House sponsors of HB498 have taken an important step towards assuring this same access to autism treatment for North Carolina families.

Today one in 88 Americans are born with autism, a non-curable but treatable neurobiological disorder that impacts communication, social interaction and behavior. The National Center for Disease Control describes autism as one of the nation’s most critical health issues and its incidence is on the rise. Autism affects more children than cancer, AIDS and diabetes combined.

And it does not differ from other non-curable chronic medical conditions that health insurance routinely covers, including asthma, diabetes and hypertension. Yet children with autism do not have access to the health insurance coverage for treatment that is routinely provided for these and other health disorders.

The cost of autism care is $90 billion a year in the U.S. and places a heavy burden on the families who live with the disorder but cannot afford appropriate autism treatment. These families are paying health insurance premiums, yet their child with autism is excluded from coverage.

Families face the day-to-day challenges of raising a child with autism plus the additional financial hardships that result from health insurance exclusions. Unreimbursed out-of-pocket expenditures for medical care and autism treatment put families in financial insecurity, debt and even bankruptcy as they utilize savings and retirement funds to pay for needed therapies. Alternatively, families are forced to make the agonizing decision to not provide their child with these evidenced-based therapies known to improve symptoms dramatically.

While the costs of autism care are staggering, the cost for autism health insurance coverage is minimal. The insurance industry’s own claims data show that autism insurance coverage generates an increase in premiums of less than one percent.

In our state, that small investment would yield big returns. Autism treatment focuses on diminishing or controlling symptoms that can range from mild to quite severe. Research shows that symptoms of autism can be improved by appropriate evidence-based therapies thus improving the quality of life for the individual and his or her family and reducing the long-term costs to society of caring for untreated children. Every new child diagnosed with autism will cost an estimated $3.2 million over his or her lifetime. Early diagnosis and intervention can reduce this cost by two-thirds. Autism insurance coverage will help make this happen.

Autism insurance coverage would reduce costs to schools because children with autism would receive a head start on appropriate therapies before they entered the school system. Autism insurance coverage would also attract new health care jobs to North Carolina. Availability and access to board certified behavior analysts and other evidence-based autism treatment providers would grow if lawmakers require autism insurance coverage. And ultimately, autism insurance coverage would save taxpayer dollars by reducing the long-term costs of care.

The Autism Society of NC has been promoting opportunities and providing supports for North Carolinians with autism and their families for over 40 years. Every day, we hear from families about the hardships they experience from this unfair health care insurance exclusion. Along with many community partners and lawmakers, we have been working tirelessly to pass autism health insurance coverage in NC. This year, we encourage lawmakers to make it a reality.

HB 498 has already attracted 40 House sponsors from both sides of the aisle. We urge our remaining state lawmakers to join their colleagues and show their support for North Carolina families by correcting the exclusion of autism therapies from health insurance coverage.

Tracey Sheriff is CEO of the Autism Society of North Carolina. He can be reached at tsheriff@autismsociety-nc.org.

Celebrating our Bookstore as Part of Autism Awareness Month

This blog post was written by Dawn Eberwein, Bookstore Manager for the Autism Society of North Carolina.

The ASNC bookstore is a unique place that provides information, resources, employment, and support for the ASD community.  We are a place for parents, self-advocates, teachers, practitioners, or anyone in a relationship with someone on the spectrum to who wants to find out more about autism.

Many parents come to the bookstore for the first time just after their child has been diagnosed to look for information to help them, their family, their child, and their child’s teachers understand the diagnosis. Every transition in a child’s life brings new adventures and challenges, so parents return looking for information on topics such as social skills, behavior, communication, bullying, and friendships. Parents often let us know about new resources that they’ve found so that we can share them with others. We are thrilled when parents who stop by or call us to tell us about a milestone that their child has met. They know we feel a personal connection to their child’s success.

Often, we think of a child when we hear of someone being diagnosed with autism, but adults are diagnosed every day, too. Spouses stop by the bookstore looking for resources to help with their relationship with their husband or wife and for information to help their children understand their parent’s diagnosis. Recently, a spouse came by looking for information for her and her newly diagnosed husband on understanding and managing their relationship.  We found a couple of books for her and one for her husband. She has been back several times to let us know which books were most helpful for her and to look for information on different topics as she and her spouse navigate their relationship.

Self-advocates contact us for resources, too. College students getting close to graduation want to learn more about navigating socially in the work place. Adults often want information to help their spouse better understand ASD and how it affects their relationship.

Three-fourths of our bookstore staff is on the spectrum. Our amazing staff members pack and ship our orders to families and schools all over the world and help us manage the daily operations of the bookstore. We also provide volunteer opportunities and summer internships for individuals on the spectrum. High school and college students on the spectrum volunteer and work summer internships to gain skills, experience, and a sense of confidence in the work place.

We are an important source of information for physicians, practitioners, and teachers. We supply pediatricians with resources for their patients’ parents. Recently, a group of teachers met with us to brainstorm about the most appropriate resources to meet their needs and the needs of their co-workers who work in self-contained and inclusive classrooms. We reviewed the latest materials on inclusion, social challenges, behavior, and reading comprehension. We scoured the websites of our suppliers to make sure that they got exactly what they were looking for.

All of our books, DVDs, and assessment kits are available online, and we provide personalized service and book recommendations via email, over the phone, or in person. We look forward to helping you during Autism Awareness Month!

You can reach Dawn Eberwein at 919-865-5087 or deberwein@autismsociety-nc.org.

Extinction Bursts and the Importance of Full Disclosure

This blog post was written by Dr. Aleck Myers, Clinical Director for the Autism Society of North Carolina.

Recently, I wrote a behavior support plan for an individual who frequently tantrums. Great methodology, if I do say so myself! It was well written and explained the rationale of the program to family and staff, stressing the importance of strengthening functional communication (the individual was communicating beautifully, just not the way we wanted him to! There’s nothing like a good sit-down-and scream-bloody-murder to let us know when he wants something or wants to quit something!).

We need to give people acceptable tools to express their wants and needs. So the program offered ways to do that. And the program stressed the importance of not paying any more attention to the tantrum behaviors than absolutely necessary. In other words, tantrums were to be placed on “extinction” (removing all attention to the behavior. Note though: not the person; the behavior). So this psychologist left the training feeling good about the program and the willingness of family members and staff to implement the program correctly and collect all of the necessary data.

Two and a half days later, I received a distressed email from Mom. Tantrums were through the roof in frequency, she was exhausted, and she felt that the program was making the individual’s behavior worse. It was then I realized, with great chagrin, that I had failed an important part of my training…I hadn’t described the “extinction burst.”

When you begin to ignore behaviors that are socially reinforced, the behaviors will increase in frequency and intensity almost immediately. This is the extinction burst. You can think of it as, hey, this used to get me what I wanted, now it doesn’t…that makes me mad, so let’s try harder! As a professional, when I see this burst in behavior, I feel assured that the program is going to work. From this parent’s point of view, though, not having been warned, things were getting much worse. Luckily, I was able to reassure the mother that this was not a bad sign, and if she and the staff hung in there, things would improve soon. Mom is a real trooper, and she, Dad, and the staff persisted.

I called the mother a couple of days later and was greatly relieved that a) she was still talking to me, and b) the afternoon after she had emailed me, the unwanted behaviors decreased, and that things were definitely improving now. This was further enhanced by an email two days later, indicating considerable improvement. And that the emphasis on strengthening communication was continuing.

Now if I can just improve my own functional communication!  I think I learned my lesson…

You can reach Dr. Aleck Myers at amyers@autismsociety-nc.org.

College Admissions Testing and Autism

This contribution is from Parent Advocate/Trainer Nancy Popkin.

Back when my son was diagnosed with autism, I couldn’t imagine him going to college, let alone surviving his school years. But here we are, sixteen years post diagnosis, with a high school graduate who is now a college freshman. If college is in your child’s future, now is a good time to start planning. There are so many steps along the road to college for anyone and the path is more circuitous for someone with an autism spectrum disorder, but here I want to address one step along the way, college admissions testing.

Possible Standardized Tests
Most colleges today require students to submit scores for the SAT or ACT as part of the application process. These tests are administered by the College Board and the ACT (formerly American College Testing Program), respectively. In addition, some students with autism diagnoses may be taking AP (Advanced Placement) Exams, also administered by the College Board. But even before your child takes his/her first SAT or ACT, there is the PSAT/NMSQT. If your child is following the standard course of study and working toward a Future-Ready Core Diploma Track, they will most likely have their first exposure to college testing with the PSAT in October of the tenth grade year.

Accommodations
The test will be administered by your child’s high school, but here’s the catch: your child’s testing accommodations, as outlined by the IEP, do not automatically apply to the PSAT or subsequent standardized tests. There are steps you must take, beyond the IEP to assure that your child has testing accommodations for the PSAT and any other College Board tests that will follow. The same is true for the ACT. To learn more about the testing accommodation process, what documentation is required, and the timing for applying, check here for the PSAT, SAT, and AP exams,  and here for the ACT.

For the most part, there is someone, either a school counselor or testing coordinator, who applies for the testing accommodations for your child. Your child’s EC teacher should be able to tell you who this is at your school. I would encourage parents to be proactive and contact this person in 9th grade to get this process started rather than waiting for them to contact you. The accommodation application needs to be submitted seven weeks or more before the test your child will take. So if you are planning for the PSAT administration in tenth grade, the end of August is the latest you should be filing for testing accommodations. Even earlier is better as sometimes the College Board will request more documentation before granting some of the accommodations, so time for this further submission should be provided.

Some more unusual accommodations may not be approved. One accommodation my son had on his IEP was to take all tests in pencil (some of his teachers required essays in pen). We applied for this accommodation well in advance of the AP US History exam (also administered by College Board) but it was denied. This gave us time to demo tons of different types of pens and have him practice writing with the best one so he could pull off the essay (he did great).

Once the accommodations are set, you will not need to reapply for each test. You will just need to bring the accommodations confirmation letter your son/daughter receives to each test he/she takes.

Preparing for Test Day
With the exception of the PSAT, you will need to register for testing days on your own if your son/daughter is taking the SAT or ACT. Go to the respective links provided earlier to find out possible test dates for the respective tests. To determine which tests you need to take, you will need to begin a college search and find out which tests are required by the colleges to which your son or daughter is hoping to apply. Don’t leave testing to the last minute in case a retest is desired to get a better score. For some students taking the test twice is a good idea. The first time is for getting used to taking the test as there will be some new experiences when taking the test. The second time things will be more familiar.

Once you have registered for the test, put it on a calendar and come up with a plan for preparing. There are tons of study guides out there. College Board will email a single practice question every day if you want. We actually did not have our son do too much preparing for the PSAT or SAT. We didn’t want him to get anxious about it and we weren’t sure if he would generalize the practice to the actual test. For other students, it may be appropriate to review the different sorts of math problems and verbal reasoning questions to expect, as well as the expectations for the writing section.

Closer to test day, make a schedule for your son or daughter to know how the day will proceed. The College Board tells you exactly what you are allowed to bring into the testing location. They are very strict about this, so discuss this in advance as well. Get these things ready the night before the test. There is lots of good information about what to expect on the College Board website.

On Test Day
On test day, you will not be allowed to escort your son or daughter to the proper room or talk to the proctor, so make sure they know how to self-advocate if they need to. This is especially important if they are taking the test in a school other than their own high school, where things are familiar.

My son took the SAT at an unfamiliar high school, so I went ahead and prepared a page for him to give to the proctor in his testing room. He and I discussed this in advance and he helped me write the page. We provided his name and contact information and my contact information at the top. If you choose to do this, keep it brief and simple. We also provided the following information on this page:

Gray has a diagnosis of autism. Things he might do that are due to his autism:

Make audible silly sounds.
Pop out of his seat and flap his arms or hands.
Sit on his knees and hang his head below the seat of the chair.
Make grunting sounds if he is frustrated.
When frustrated or scolded, he may hit his head with his fists.

Please redirect Gray by telling him what he should be doing instead.

Gray may need help when using a telephone, finding a restroom, or knowing when he can have a break.

On test day, I did take my son into the testing location front door and immediately found an adult to help him figure out where he was to go. I had my phone on and hung out at a coffee shop near by. If your child has extended time, the testing session will last 50% longer than other students. So expect to pick up your child five and a half hours later.

When Gray came out of the testing center, he was accompanied by someone who clearly was making sure he got out of the building safely. She even reported that he did great! He looked at me and said, “You owe me!” I do find it so ironic that the kids who need to get up and move around the most, have to stay the longest to take these tests, so I agreed with him. I did owe him and told him how proud I was that he handled the stress of the test and a strange location so well! I offered to do whatever he wanted for the rest of the day! But all he wanted was a Hershey Bar! Wish granted.

These standardized tests are just one step of many in preparing for a college experience. With careful planning, our kids can have a positive testing experience and do their best. Then it is on to the application, college visits, deciding where to go and moving on!!

A great resource is the book, Realizing the College Dream with Autism and Asperger Syndrome by Ann Palmer, available at the Autism Society of North Carolina Bookstore.

Written by Nancy Popkin, Parent Advocate/Trainer. To contact Nancy, please send an email to: npopkin@autismsociety-nc.org.