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.

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.

 

Seeing is Believing

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.

A New Year, A New Approach to Challenging Behaviors

Editor’s Note – The following post was written by Louise Buchholz Southern, M.Ed., BCBA, Training Specialist for the Autism Society of North Carolina (ASNC).

As professionals working in the field of Autism Spectrum Disorder (ASD) intervention and as parents of individuals with ASD, it’s likely that we have all experienced challenging and persistent behaviors. These behaviors come in many forms including aggression, property destruction, non-compliance, and self-injurious behavior, to name a few. When we experience these behaviors in an individual with ASD, one of the first questions we should ask ourselves is, “What is the individual trying to communicate with this behavior?” What want, need, confusion, or fear is the individual trying to express? As one individual with ASD stated, “You can’t not communicate. Everything you say and do or don’t say and don’t do sends a message to others.”

Some behaviors take us by surprise, and seem to appear without any cause. However, if we operate under the assumption that there is always a reason for the behavior, we are more likely to take the action necessary to change behavior. Changing someone else’s behavior always requires a change in our own behavior first. So as the New Year begins and as we continue to face challenging behaviors, let’s assume that behavior is always meaningful and let’s ask ourselves these questions:

• Does the individual have a way to communicate his/her wants, needs, and choices all of the time and across contexts? In order to teach an individual the power of communication, we cannot compartmentalize their communication to certain parts of the day or to certain locations (e.g. only when the instructor directs the individual to a choice board that is affixed to the wall).
• Even if the individual is “verbal,” does s/he functionally communicate? For example, some individuals script from TV shows, or they repeat back what they hear rather than responding. Some individuals are nonresponsive to anyone other than people with whom they are very familiar. Some individuals use language that does not seem to make sense given the context. Some individuals label everything, but don’t use language to express wants or needs, or to respond to questions and statements. In all of these examples, while the individual is “verbal,” we need to explicitly teach and reinforce functional communication.
• Note: ASNC’s Training Department is preparing to launch a functional communication training workshop this spring. In addition, the Autism Internet Modules website http://www.autisminternetmodules.org offers a range of free trainings on evidence-based practices such as functional communication training and the Picture Exchange Communication System (PECS).
• Have we identified a behavior that we can teach and reinforce to replace the behavior that we don’t want to see?
• Are we effectively reinforcing those behaviors that we want to see? Are we applying consequences that are actually reinforcing /motivating to the individual? Are we reinforcing the appropriate behavior consistently, and are we making sure that the individual understands the connection between behavior and consequence (reinforcer)? Are we attending to (and reinforcing) those behaviors that we want to increase significantly MORE than we are attending to those behaviors that we want to reduce? Are we missing opportunities to reinforce the individual when s/he is doing what is expected?
• Are we delivering instructions/information in a way that the individual with ASD can understand?
• Are we visually structuring academic, leisure, and work activities so that the individual understands what to do, how much to do, when finished, and what next? Many individuals with ASD experience significant anxiety and frustration when they don’t understand the expectations, the “rules” of the game, or when the activity will be finished.
• Has there been a change to the routine or has something unexpected occurred? How can we better prepare the individual for these inevitable events?
• Does the individual have a strategy in place to regulate his/ her sensory needs? What self-calming activities do we need to explicitly teach? How does the individual indicate that he needs a break?

For more information about support services available to individuals, families and professionals through the ASNC Training Department contact Louise via email at lsouthern@autismsociety-nc.org.

For titles related to challenging behavior please visit the Autism Society of North Carolina Bookstore located at www.autismbookstore.com.

Action Needed: Personal Care Medicaid Changes Threaten Group Home Residents

Recent news reports have shed light on changes that will have a negative effect on individuals with Autism Spectrum Disorder and other disabilities who receive assistance through Medicaid’s Personal Care Services (PCS).

Please note that the Personal Care Services described in this blog are not the same personal care services delivered to individuals who are in the Community Alternatives Program for Intellectual and Developmental Disabilities (CAP-IDD) or those in the Innovations waiver program. – Editor

By Jennifer Mahan, ASNC Director of Advocacy and Public Policy

North Carolina recently changed the Medicaid eligibility criteria for people with disabilities to qualify for Personal Care Services, which is one-on-one care assisting people with things like eating, dressing, bathing and other daily living activities. These changes were prompted by a Medicaid rule that PCS delivered to someone living in their family’s home or an adult care homes have the same eligibility requirements.

Several options for eligibility criteria to use were presented for consideration during the 2012 legislative session. The one passed in the most recent state budget raised the eligibility criteria for PCS across the board which “saved” Medicaid several million dollars, but also resulted in making thousands ineligible for PCS. Here’s why:

• Residents of some group homes (often referred to as the 5600 or DDA group homes) for people with developmental disabilities and mental illness need Personal Care Services. Without the Medicaid funding for those services, group homes can no longer afford to provide care to their residents and support their operation. Simply put they have lost part of the revenue needed to keep the doors open.
• This month along with the loss of services, people began getting notices they must move. These people with disabilities, living on social security disability payments and unable to provide for much of their own care, now have nowhere to go.

You can read several new articles explaining how this crisis developed here:

• North Carolina Health News Coverage
• Charlotte Observer Coverage
• WRAL TV Coverage

On November 30th, the Speaker of the North Carolina House, Representative Tills, sent a letter to the Governor requesting that she call a special session of the Legislature to deal with group home funding and in the letter he promised that no other bills would be brought up for vote. The Autism Society of North Carolina thanks Speaker Tills for recognizing the critical nature of this situation in which thousands of people with developmental disabilities and mental illness may become homeless.

Now, the Governor must agree to the special session and Legislators must agree on how to fix the crisis. The Autism Society of North Carolina is working with the Arc of North Carolina and other advocacy groups to urge elected officials to call a special session of the NC General Assembly before December 31, which is when PCS services for many will end and threaten the loss of housing for thousands.

As of the posting of this Blog (Sunday, December 9) there has been no action on a special session. ASNC is asking individuals interested in this issue to become involved in the discussion. Here’s what you can do:

1. Sign the online petition to urge The Governor and Legislature to solve the Personal care crisis now!

2. If you prefer to contact elected officials directly, information is below. As always, please personalize your message by using your own words.

To contact Governor Perdue you can email her via the Office of the Governor email: governor.office@nc.gov

The message to the Governor is simple:
Please call a special session of the General Assembly and/or worth with Legislative Leadership to find a solution to the Personal Care Crisis for group homes and people with developmental disabilities.

To contact the Senate Leadership you can email Senator Phil Berger, President Pro Tem of the NC Senate at Phil.Berger@ncleg.net.

The message:
Please work with other Legislative leaders and the office of the Governor to find a solution to the Personal Care Crisis for group homes and people with developmental disabilities.

To contact the Speaker of the House Representative Thom Tillis, use email address Thom.Tillis@ncleg.net

The message:
Thank you for asking for a special legislative session and your commitment to finding a solution to the Personal Care Crisis for group homes and people with developmental disabilities.

We also encourage you to contact your own NC General Assembly Senator or House Representative and let them know of your concerns. To find your elected officials click here.

If you have any questions about these or other public policy issues please contact Jennifer Mahan, Director of Advocacy and Public Policy at jmahan@autismsociety-nc.org or 919-743-0204,  extension 1116.