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.

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.

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.

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.

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.

North Carolina General Assembly Representatives Chuck McGrady, Tom Murry, Phil Sheppard and Trisha Cotham have introduced NC House Bill 498, titled “Mandate Autism Health Coverage.” The bill would ensure that health benefits plans in North Carolina will provide coverage for diagnostic and treatment services for Autism Spectrum Disorders in individuals in private and state health plans that are covered by North Carolina insurance law. HB 498 has been referred to the House Committee on Insurance, then if the bill receives a favorable report (they vote yes) the bill moves on to the next committee. The procedure is that bill must be heard in those committee and voted on favorably to be considered on the House floor.

We all know it’s the right thing to do, making sure that children with autism get the services they need to be healthy and successful. We also know that it will save money in the long run by promoting independence and less disability. North Carolina should join the other 32 states who now have coverage for autism spectrum disorder!

ACTION: The Autism Society of North Carolina is following this legislation closely and actively working to see it passed, but we need your help to make it happen. More and more Legislators are aware of autism, its impact and the need to address the issue even when they don’t completely understand autism spectrum disorder or the services and treatments. You can tell them that insurance coverage is something they can do to help and ask that they pass House Bill 498. Check the bill page and see if your General Assembly House member has put their name on as a sponsor or co-sponsor. Legislative districts changed last year so please be sure to check who represents you currently.

• If your NC House Representative has sponsored or co-sponsored, please call, email or write them a note thanking them for their support. This is a good time to let them know how much this means to you, your child, those you care about or those you serve 

• If your NC House Representative was not a sponsor it’s still important to educate them about this bill.  Tell them how much insurance coverage would mean to you and others who care about someone on the autism spectrum and that its time that North Carolina joined the other 32 states with insurance coverage laws.

If you have questions about this public policy issue or others affecting autism, please contact Jennifer Mahan, Director of Government Relations, Autism Society of North Carolina, 919-965-5068 or jmahan@autismsociety-nc.org.

The Autism Society of North Carolina advocates on public policy issues, monitors activities of the General Assembly and works to inform you about how these issue might affect people on the autism spectrum. If you have questions about these or other policy issues, please post your questions below or contact Jennifer Mahan, Director of Advocacy and Public Policy at 19-865-5068 or jmahan@autismsociety-nc.org. 

Governor Releases Budget Proposal

Governor Pat McCrory released his state budget proposal on March 20^th, in what will be the first step in a lengthy process to develop a state budget for the 2013-2015 biennium. Legislators had the opportunity to hear from the Governor’s budget staff March 21st about the proposal and to ask questions in a Joint Appropriations Committee meeting. The next step is for the NC Senate to develop their budget legislation, which does not need to be based on the governor’s proposal. More information on how the budget process works in North Carolina can be found at the end of the news article here.

The Governor’s budget overall maintains services and supports to individuals on the autism spectrum and those with other developmental disabilities; there are no major cuts to Medicaid and no major cuts to the Division of Mental Health, Developmental Disabilities and Substance Abuse Services.  Medicaid funding is increased to allow for growth in the number of people who will access the program due to changes with the Affordable care Act in 2014. A first reading of the 1300-page document reveals the biggest concerns for disability advocates to be:  1) a prior authorization requirement for obtaining mental health medications under Medicaid; in other states this has kept people with mental health conditions from getting needed medications and 2) the elimination of 3200 teacher assistants in 2^nd and 3^rd grades, and the lowering of the ratio of TAs to students in K-1, to pay for 1800 more teachers to address school enrollment growth.  Since many children with disabilities are now in mainstream classrooms, fewer teacher assistants in those grades could mean less assistance for kids with Individual Education Plans (IEPs) or 504 plans since teaching assistants often provide that additional support. Local school districts would have the flexibility to determine how those funds would be used, so it is not entirely clear what the impact of shifting those funds from TAs to teachers would be.

Education Scholarship for Students with Special Needs Would Replace Tax Credit

Representative Paul Stam, the original sponsor of the education tax credit for children with special needs, has introduced new legislation to change the tax credit into a scholarship program, House Bill 269.

This program is nearly identical to the tax credit program, assisting families who move their child with a significant disability out of the public school system and into a private or home school, with a few differences: 1) it would open the program to a wider array of income levels since it is not dependent on a family’s tax liability 2) it would grandfather into eligibility those currently eligible for the tax credit 3) it would include the provision that was intended to go into effect for the tax credit next year, requiring only one semester of public school in North Carolina to be eligible (the current criteria is two semesters) 4) it would be a set amount of money, $3000 per semester, unlike the variability of a tax credit.

The Autism Society of North Carolina worked to pass the tax credit bill and believes this bill is a positive change that will carry similar benefits to families and children as the previous law.

Since it uses scholarships, the new program would have a limited amount of funding, $3 million to start, so individuals would need to apply yearly for the funding (those currently getting a scholarship appear to have some priority in accessing the scholarships). However, given the above changes, we believe that the program will attract more families than the current tax credit since it is easier to use and available to all income levels. Rep. Stam intends for this program to be permanent, but of course the legislature cannot obligate future legislatures so there are no absolute guarantees.   Just like the tax credit, these scholarships would not be available to people who took their child with special needs out of public school prior to June of 2011 when the original tax credit bill passed. This will disappoint some parents who were hoping that legislation would eventually expand to include them – they have a good argument for more funding to support additional families and ASNC would continue to work with them to advocate for their position.  This is a good time to find an alternative to the tax credit as we expect major tax reforms are coming, either this year or next, and this tax credit could be lost.

ACTION: Please contact your North Carolina legislator and express your support for the scholarship program for children with special needs. If you believe the scholarship program would not cover your child due to limits in the eligibility criteria, state your belief that the program should be expanded to include your child.  NC House and NC Senate legislative voting districts changed this year, so you should check to see which district you are in and who currently represents you in the General Assembly on the new easy to use district map page.

Temporary Fix for Group Funding Problems Enacted

On March 6^th Governor Pat McCrory signed House Bill 5, Temporary Funding /Group Homes and Special Care Centers. This temporary fix to the Personal Care Services and group home crisis will allow group homes whose residents have been denied Personal Care Services to access special funding through June 30^th, 2013. This funding will keep the group homes operating and their residents cared for in the short-term. Governor McCrory, Speaker Thom Tillis, President Pro Tem Phil Berger, Senators Ralph Hise and Louis Pate, as well as Representatives Marilyn Avila, Justin Burr, Nelson Dollar, and all deserve thanks, along with the other bill sponsors and General Assembly members for their role in getting this bill passed quickly.

Since this is a temporary fix, the legislature must get a long-term fix in place before the temporary funding expires at the end of June. For the past several years, the intellectual and developmental disabilities (IDD) advocacy community, including the Autism Society of North Carolina, has been working on a proposal that serves as a long-term fix by allowing Medicaid funds to be used for support services in community settings using the “1915i option.” This “i” option offers an excellent opportunity to create a stable future for these individuals with IDD living in group homes, and thousands of others in other community settings.

This policy update contains both an update on the North Carolina General Assembly (state laws) as well as actions by the US Congress and federal regulators (federal laws).

North Carolina General Assembly Update

Group Home Bill Moves

House Bill 5, which would extend temporary funding to residents of group homes who no longer qualify for personal care services, passed the Senate and returns to the House where they are expected to concur. The Senate committee amended the bill so that the funding also extends to residents of special care units, who assist people with dementia. In addition, the new version of the bill would clarify several dates and make technical language changes. This bill is not a permanent fix to the problem, as the funding will end June 30^th. The Autism Society of North Carolina (ASNC) is hopeful that the General Assembly will work on a permanent funding solution to make sure that people can remain in their community homes. Read more about the issue and the bill here  and here.

• TAKE ACTION: Thank your NC General Assembly House member and NC General Assembly Senator for extending these funds for group homes which ensures that people will be able to stay in their homes.  Remember, NC House and NC Senate districts changed this year, so you should check to see which district you are in and who currently represents you in the General Assembly on the new easy to use district map page.

NC General Assembly Says They Will Not Expand Medicaid

The NC House and Senate have passed bills (H 16  and S 4 ) which would prevent NC from expanding Medicaid to cover an estimated 500,000 low income individuals who would not qualify for health insurance coverage subsidies from the Federal government that make insurance more affordable under the Affordable Care Act. Without subsidies, advocates are concerned than many of these individuals, which include single people with disabilities and families of children with special needs, will not be covered by health insurance. Rural hospitals and other health care providers have expressed concerns that without health coverage, and with the loss of Federal funds for those without health care, hospitals will bear high costs for people who show up needing emergency care. Governor McCrory has indicated that with the problems in Medicaid and without more assurances of long term funding from the Federal government, he does not support expanding Medicaid. Read more here and here.

• TAKE ACTION: ASNC supports expanding Medicaid to cover low income people, including those with autism spectrum disorder and their families, to ensure they have access to basic health care services. You can contact Governor McCrory and encourage him to veto this legislation, and say yes to expanding Medicaid. The Secretary of NC Health and Human Services has told the Legislature that problems in the Medicaid program that were recently identified in a state audit will be fixed by the end of the fiscal year. Let’s make sure we don’t leave people without healthcare in the coming years.

Federal and Congressional Update:

ABLE Act Reintroduced

The US Congress has reintroduced the Achieving a Better Life Experience Act (ABLE Act) HR 647 which would allow individuals with disabilities and their families to set funds aside in tax free savings accounts (similar to 529 plans used to fund college educations) that could be used to help a individual with a disability with the costs of education, housing, transportation, technology assistance, and employment without adversely impacting means-tested Medicaid and Social Security benefits. These funds could be used in addition to those benefit programs and help people live more stable and economically independent lives.

ACTION: Senator Richard Burr has already signed on as co-sponsor of the Senate bill: please thank him. Urge Senator Kay Hagan to sign on to S 313 and ask your Representative in the US Congress to sign on to HR 647.  To find out who represents you in the US Congress go to the House page and to find out how to contact Senators Burr and Hagan got to the Senate page.

Federal Regulators Leave Out Autism Coverage

When the Affordable Care Act (ACA) was passed, it included the requirement to cover “behavioral health treatment.” Advocates worked with Congress to include this language in the bill to ensure coverage of autism therapies such as applied behavioral analysis (ABA). Recent federal regulations were released for coverage of behavioral health treatment in health care exchanges which are required under the ACA to act as a health care marketplace for those not currently covered by group health coverage. Despite significant advocacy by autism groups and families, these regulations unfortunately do not include autism therapies like ABA as part of the definition of “behavioral health treatment.”  This leaves many states that have passed autism insurance laws in recent years in limbo, with state regulators left with the decision of whether or not to include these therapies in their health care exchange marketplace. Read more on this at Disability Scoop.

In addition, the Federal government has decided not to define the habilitation benefit under the ACA rules. The definition of what is covered under habilitation services has been left up to individual states. ASNC, working with other advocates for people with special health care needs, submitted comments to the Federal government and the state Department of Insurance encouraging them to set a definition and a basic set of services for habilitation that would include services such as respite, hands-on care, one-to-one skill building, and other habilitative services that really make a difference in people’s lives. ASNC will continue to advocate on this issue and monitor the outcome of decisions about the healthcare that will be available through North Carolina’s health care exchange market.

• TAKE ACTION: a North Carolina parent has created a nationwide White House petition to ask the President to respond to leaving ABA services out of federal regulations for the Affordable Care Act. Please sign the petition and share it with friends and neighbors, as well as through Facebook or other social media. You can sign the petition whether you agree with Obamacare or not: since the new health care law will be implemented next year, it should include services for those on the autism spectrum! The petition needs 100,000 signatures by March 24th so please sign now (You must register on the petition site to sign, but it’s worth it.)

To learn more contact Jennifer Mahan, Director of Advocacy and Public Policy, at jmahan@autismsociety-nc.org.

Editor’s Note – The following article was written by Amy F. Hobbs, Training Coordinator with the Autism Society of North Carolina.

Research shows that video modeling is an effective strategy to use with individuals with Autism Spectrum Disorder to improve social and communication skills. As a trainer, I frequently emphasize the importance of showing children with autism what you want them to do as opposed to just telling them. Verbal directions are typically difficult for individuals with autism to process as their visual processing skills are more advanced than their auditory processing skills. Video modeling or the process of instructing through watching a model therefore provides an excellent opportunity for students to actually see the behavior or the skill that is requested and therefore better understand it.

Not only is video modeling time and cost effective, but it can be rehearsed and rerecorded until the exact skill or behavior desired is captured. This is a much cleaner method than live modeling and can be watched repeatedly until the skill is learned as well as used as a tool for maintaining the skill. In fact, video modeling is a practical method of instruction for teachers that can be used with multiple individuals needing practice on the same skill.

As with computer screens, video modeling takes away the interpersonal component present in 1:1 teaching that makes learning more challenging for individuals with autism. It offers instead a mode of instruction that is highly motivating and fosters independence.

Video modeling has been used to teach many different social, academic, behavioral or functional skills from iPod use to how to give a compliment. Many studies show the success of video modeling in teaching challenging social skills such as recognition of emotions, perspective taking, social initiations, eye contact, social greeting, sharing and engagement in social conversation. My goal here is to demonstrate the simplicity of the video modeling process by giving some basic steps to follow.

1. Determine if the child has the perquisite skills needed to ensure success. These include basic imitation skills, normal visual and hearing acuity, and the ability to attend to a video for at least one minute.
2. Teach a skill that can be easily modeled and observed. An ideal target skill is one that the child is able to do with prompting.
3. Decide who to use as models in the video. Peers, siblings or other children of a similar age are good choices. Once the skill or behavior is learned, videotape the child with autism displaying the target skill or behavior (video self-modeling). This can be a powerful tool for increasing the child’s self-efficacy (Bray & Kehle, 1996) as well as reinforcing the maintenance of the skill.
4. Write the script for the models and keep it short. Three to five minutes is recommended, but it can be shorter.
5. Video the models making sure that the important actions are clearly visible and that the audio is clear and free of distracting sounds. Keep it simple.
6. Intervention includes:
   a. Showing the video model to the child with autism several times and then
   b. Providing a time and place to practice the skill.
   c. Monitoring and keeping data on the child’s progress.
   d. Testing to see if skills generalize to other settings and people.

Often video modeling instruction is paired with another method of teaching such as peer mentoring, social skills groups, self-management, reinforcement, role modeling and other applied behavior analysis techniques to ensure success. Below is a list of research articles that demonstrate success using video modeling.

References:

• Bray, M., & Kehle, T. (1996). Self-modeling as an intervention for stuttering. School Psychology Review, 25, 358-369.
• Other research:
• Bellini, S., Akullian, J., & Hopf, A. (2007). Increasing Social Engagement in Young Children with Autism Spectrum Disorders Using Video Self-Modeling. School Psychology Review: Volume 36, Issue No. 1.
• Charlop-Christy, M.H., & Daneshvar, S. (2003). Using Video Modeling to Teach Perspective Taking to Children with Autism. Journal of Positive Behavior Interventions: Volume 5, Issue No. 1, pp. 12-21.
• Charlop-Christy, M.H., Le, L., & Freeman, K.A. (2000). A Comparison of Video Modeling with In Vivo Modeling for Teaching Children with Autism. Journal of Autism and Developmental Disorders: Volume 30, Issue No. 6, pp. 537-552.
• Corbett, B.A. (2003). Video Modeling: A Window into the World of Autism. The Behavior Analyst Today: Volume 4, Issue No. 3.
• Corbett, B.A. & Abdullah, M. (2005) Video Modeling: Why Does It Work for Children with Autism? Journal of Early and Intensive Behavior Intervention: Volume 2, Issue No. 1, pp. 2-8.
• D’Ateno, P., Mangiapanello, K., & Taylor, B. A. (2003). Using Video Modeling to Teach Complex Play Sequences to a Preschooler with Autism. Journal of Positive Behavior Interventions: Volume 5, Issue No. 1, pp. 5-11.
• Goldsmith, T.R. & LeBlanc, L.A. (2004) Use of Technology in Interventions for Children with Autism. Journal of Early and Intensive Behavioral Intervention:Volume 1, Issue No. 2, pp. 166-178.
• Hine, J.F. & Wolery, M. (2006). Using Point-of-View Video Modeling to Teach Play to Preschoolers with Autism. Topics in Early Childhood Special Education: Volume 26, Issue No. 2, pp. 83–93.
• Hine, J.F. & Wolery, M. (2006). Using Point-of-View Video Modeling to Teach Play to Preschoolers with Autism. Topics in Early Childhood Special Education: Volume 26, Issue No. 2, pp. 83–93.
• Smith, C., Williamson, R. & Siegel-Robertson, J. (2005). Implementing Technology to Teach Social Skills to Students with Multiple High-Incidence Disabilities. Unpublished University of Memphis research study, 11 pp.
• Wert, B. Y., & Neisworth, J. T. (2003). Effects of Video Self-Modeling on Spontaneous Requesting in Children with Autism. Journal of Positive Behavior Interventions: Volume 5, Issue No. 1, pp. 30-34.
• Williams, C., Wright, B., Callaghan, G., & Coughlan, B. (2002). Do Children with Autism Learn to Read More Readily by Computer Assisted Instruction or Traditional Book Methods? Journal of Autism and Developmental Disabilities, Volume 6, pp. 71-91

Amy can be reached via email at ahobbs@autismsociety-nc.org or by phone at 828-236-1547.

This week marks the beginning of the North Carolina General Assembly long session, which typically lasts from the end of January to sometime in June/July.  Lawmakers arrived for work in Raleigh over the last two weeks and began organizing for the session, with new legislators receiving training.  There are a LOT of new folks – of the 170 legislators, 80 are serving in their first or second term.  They began hearing bills starting on January 31, and already leadership in the House and Senate have been discussing policy priorities, prior to bills being filed. We are likely to see proposals for tax reforms, changes to education, voter identification, overhauling unemployment compensation and reigning in Medicaid.

The Autism Society of North Carolina has its own set of public policy targets. These targets promote public policies that enhance the lives of individuals on the autism spectrum and their families. The targets are updated each year based on community feedback.  Though we work to promote these targets with our legislators, some issues get more attention than others in any given year. With the stated priorities of this new General Assembly, what might the session hold for those with Autism Spectrum Disorder?

1. Raising Autism Insurance Standards: The Autism Society of North Carolina, working in partnership with Autism Speaks, has been meeting with legislative leadership to encourage the state to adopt better insurance standards for those with autism. Expect legislation on insurance to be filed this session and to move forward through the committee process.
2. Expanded Opportunities for Children on the Spectrum to Attend Non-Public Schools: Legislation passed two sessions ago gave some families of children with disabilities a tax credit for moving to home schools or private schools.  As part of education reforms, legislators are looking at scholarship programs that would open this opportunity to more families and make the program easier to use.
3. Protections for People with Disabilities to Exercise Their Rights to Vote: Voter identification laws can have the unintended consequence of making it more difficult for people with disabilities, including those on the autism spectrum, to exercise their voting rights. Because some people do not drive, or have limited funds, or have difficulty getting needed paperwork to access photo identification, expect that lawmakers will make adjustments to voter ID proposals to accommodate people with disabilities. [Questions about voting rights? Disability Rights NC has an info page here.]
4. Changes to Medicaid: It’s difficult to predict what lawmakers will do with North Carolina’s Medicaid system, a $13 billion set of programs that provide health care and supportive services to people with disabilities, including those on CAP and Innovations. The Autism Society of North Carolina continues to emphasize the benefits of Medicaid services in assisting people to be able to live and participate in their communities. We hope lawmakers will see these programs as effective investments in communities for those on the autism spectrum, though it is looking more likely that lawmakers will not expand Medicaid this year to cover an estimated 500,000 low income people, including those with disabilities trying to return to work.
5. A Short Term and Long Term Fix for “The Group Home Problem:” Language changes in the last days of the budget process in 2012 left group homes for people with developmental disabilities and mental illness without the ability to access funds to keep operating after the legislature made changes to who could receive personal care services. One of the first bills passed this session, House Bill 5, makes sure those homes can remain funded through the end of the fiscal year. The bill now moves to the Senate. Proposals for a long term fix for group homes, adult care homes, and special care units will likely be up for discussion in the coming months.
6. The Budget: Numerous programs that are used by people with autism and their families are funded by the state’s budget – everything from special education services in schools, to  Medicaid waiver one-on-one supports, to state developmental disability center crisis programs. Over the last few years NC has cut funds for programs that served people who do not qualify for Medicaid, as well as frozen spending for Medicaid waiver programs, a trend that has left thousands on waiting lists for help. The new Governor will propose his budget priorities this spring.  Then the NC Senate will develop the first budget bill this year, with the House responding with their budget bill. ASNC will report more specific news on the budget once appropriations committees begin meeting and talking.

What can you do?

1. Stay Informed: Subscribe to the ASNC blog, sign up for our e-newsletters and alerts.
2. Talk to Your  Legislator: You can write, email, call, or visit. ASNC encourages you to share your story about autism spectrum disorder, how it affects you, your family or those you care about. We have tips for making that contact and we are glad to help you or your local chapter set up a meeting with your state legislators. You can find out who represents you here.
3. Respond to Calls for Action: Periodically ASNC will ask those in our network to respond with action. We don’t ask often, so when we do, you know we really need your help!

If you have questions about these issues, or other public policy issues for people on the autism spectrum and their families, please contact Jennifer Mahan, Director of Advocacy and Public Policy at 919-865-5068 or at jmahan@autismsociety-nc.org. if you need one-on-one advocacy help from one of our Parent Advocates,  please see the map to find those for your region. To connect with other parents, find a local Chapter or Support Group.