Autism Parenting Magazine – News, resources, and expert advice for autism parents

Check out the newest issue of Autism Parenting Magazine! With up-to-date news and professional resources for parents of children with autism, this magazine offers expert advice from medical professionals and therapists among others, autism treatment centers and therapies, news and research in the field, and even real life stories from parents and families that inspire and provide support.

 

For more information about the Autism Parenting Magazine, visit their website here.

Federal Government Calls for Greater Inclusion of Children with Disabilities in Preschools

Federal officials say that young children with disabilities should be receiving educational services in inclusive settings in greater numbers. (Antonio Perez/Chicago Tribune/TNS)

The U.S. Departments of Education and Health and Human Services are encouraging greater inclusion of children with disabilities in preschools, Disability Scoop reports. The Department of Education has reported that while a majority of preschoolers with disabilities did attend general early childhood programs since 2013, more than half received special education in contained environments.

States are being urged to create task forces to promote early childhood inclusion, establish new policies, and allocate funds to facilitate these programs and track goals for expanding inclusive learning opportunities.

In a draft policy statement on the inclusion of children with disabilities by the Departments of Education and Health and Human Services, the lag in progress on giving children with disabilities and their families access to inclusive early childhood programs is troubling for several reasons, such as:

  • “Being meaningfully included as a member of society is the first step to equal opportunity, one of America’s most cherished ideals, and is every person’s right—a right supported by our laws.
  • “A robust body of literature indicates that meaningful inclusion is beneficial to children with and without disabilities across a variety of developmental domains.
  • “Preliminary research shows that operating inclusive early childhood programs is not more expensive than operating separate early childhood programs for children with disabilities.
  • “Meaningful inclusion in high-quality early childhood programs can support children with disabilities in reaching their full potential resulting in societal benefits more broadly” (U.S. Departments of Education and Health and Human Services, 2015).

What are your thoughts on this urge for change in the early childhood setting?

Read more: “Feds Call for Greater Inclusion in Preschools”

Special Education Law and Advocacy Training by Wrightslaw: May 14th, Queens New York

Nationally acclaimed special education attorney and advocate, Pete Wright, will be presenting in New York City on May 14th, 2015 for a one day training course. Wright will speak to special education law, rights & responsibilities, tests & measurements to measure progress & regression, SMART IEPs, and tactics & strategies for effective advocacy. The course is from 9am – 4:30pm at the JFK Hilton in Jamaica Queens with CLE /CEU certificates offered with the professional rate.

For more information and registration details, visit the Kulanu website here.

Autism Awareness Month Interview Series: Creating Positive Change in ASD Treatment Through Science, Support and Education with David Celiberti, PhD, BCBA-D

We couldn’t be more thrilled to wrap up our Autism Awareness Month Interview Series with David Celiberti, PhD, BCBA. Dr. David Celiberti is the Executive Director of the Association for Science in Autism Treatment (ASAT) and provides consultation to public and private schools and agencies in the U.S. and Canada. Here, Dr. Celiberti shares his wealth of knowledge and experience in creating positive change in autism treatments through scientific research and high-quality education and support.

Don’t forget to check out the other interviews from our Autism Awareness Month Interview Series here!


Creating Positive Change in ASD Treatment
Through Science, Support, and Education
with David Celiberti, PhD, BCBA-D

SAM BLANCO: I consider the Association for Science in Autism Treatment (ASAT) to be an invaluable resource for both parents and practitioners. You serve as the Executive Director. Before we discuss ASAT, can you tell us a bit about your background?

DAVID CELIBERTI: First and foremost, thank you for the opportunity to participate in this interview, particularly as you are asking about topics that are near and dear to my heart. I have been fortunate to have a career in the treatment of autism spectrum disorders (ASD) where the journey has been just as reinforcing as the destination. I continually urge young people to work hard at finding a career path consistent with their passions. Among my many reinforcers in the field of ASD treatment are interactions with parents and siblings who did not choose a life that included ASD, but still love unconditionally, roll up their sleeves and embrace powerful roles as agents of change. Additionally reinforcing has been my collaboration with myriad professionals, particularly those who are grounded in, and informed by, science. Perhaps most inspiring, though, are the individuals with ASD themselves who work so hard to acquire new skills, learn effective strategies for negotiating their experiences, and remind us daily that science-based treatments, such as applied behavior analysis (ABA), truly make a difference.

I currently serve as the halftime Executive Director of ASAT. I view this role not as a job but as a “lifestyle”, and I am so proud of what ASAT accomplishes every year, even with a tiny operating budget. We have an incredible board of directors from diverse professional backgrounds such as special education, behavior analysis, psychology, social work, sociology, law, medicine, speech-language pathology, computer science, family advocacy and business. Many of our board members have family members with ASD. Their commitment to helping other families and professionals find a clearer path to effective intervention is astounding to me. We also have scores of volunteer coordinators, externs, and an active Media Watch team who do much of the “heavy lifting”, helping ASAT remain productive, current, and responsive to the needs of the autism community.

SB: For those out there who aren’t familiar with ASAT, can you talk a little bit more about the organization’s mission and why it continues to be such an essential resource?

DC: With respect to our mission, we improve the quality of life for individuals with ASD and their families by promoting the use of safe, effective treatments, which are grounded in science, for people with ASD. As you know, there are over 400 treatments for autism, with the vast majority lacking any semblance of scientific support. We achieve our mission by sharing accurate, scientifically-sound information with professionals, parents and journalists; and by countering inaccurate or unsubstantiated information regarding autism and its treatment as it comes up. Unfortunately, there is so much out there which distracts consumers from making the best possible choices. Our overarching goal is to help parents and providers become savvy consumers of information who can truly discriminate science from pseudoscience. This means being armed with the knowledge to ask practitioners and marketers of ASD interventions critically important questions related to the state of their science, consult with knowledgeable and impartial professionals about potential treatments, and establish methods for assessing the benefits of treatments when they are adopted by the family and their intervention team. It is absolutely heartbreaking that autism treatment has become the type of business in which parents of children with autism must work so hard just to sort through so many options and mixed messages just in order to help their sons and daughters.

For more information, your readers can visit ASAT’s comprehensive website at www.asatonline.org. On the website, they will find extensive information about the scientific support (or lack thereof) behind the full array of treatments proposed for autism; resources and guidelines on how to make informed choices and weigh evidence in selecting treatment options, and information for various groups such as parents of newly diagnosed children, parents of older individuals, teachers, medical providers, and members of the media community. We encourage people to revisit ASAT’s website often, as information about autism treatments is frequently updated to reflect the latest research, and new content is routinely added.

ASAT also publishes a free quarterly newsletter, Science in Autism Treatment. Sign-up information is available at https://asatonline.org/signup. The quarterly e-newsletter features:

  • Invited articles by leading advocates of science-based treatment;
  • A Clinical Corner which responds to frequently asked questions about autism treatment;
  • A Consumer Corner which recommends resources that can guide and inform treatment decisions;
  • A Focus on Science column which is designed to empower families to make educated treatment decisions by highlighting those elements that constitute science-based interventions as well as warning signs of unsubstantiated treatment;
  • Detailed summaries of specific treatments for autism;
  • Book reviews;
  • Highlights of our Media Watch efforts and discussion of accurate, and inaccurate, portrayals of autism and its treatment by the media;
  • Reviews of published research to help consumers and professionals understand and gain access to the science;
  • Critiques of policy statements related to autism treatment; and
  • Interviews with those who advance science-based treatment and confront pseudoscience.

Finally, your readers can also follow us on Facebook and on Twitter at @asatonline.

SB: You have dedicated a lot of your time to providing services for underserved populations, from direct services to organizing fundraisers that support organizations that serve economically disadvantaged children. Why is this an important area of work for you?

DC: When I was in graduate school in the late 1980s and early 1990s at Rutgers University under the mentorship of Dr. Sandra Harris, I was struck that only a tiny percentage of students with ASD were receiving the lion’s share of the available expertise and resources. This disparity was troubling to me as I recognized that there were scores of other children with ASD who were receiving “generic” special education services which did not yet incorporate state-of-the-art behavior analytic intervention. My hope was to one day dedicate a portion of my time to supporting students with ASD in inner city communities. As my career unfolded, I had the opportunity to work at the Rutgers Autism Program, where part of my duties focused on outreach. I started working in rural Maine in 1997, helping public schools develop and implement educational programs to students with ASD, and have now returned over 110 times! It is not that urban setting that I had envisioned as an idyllic graduate student; however, I quickly realized how rewarding it was to provide services in geographic areas that did not have the existing resources, and to assist public schools in providing high quality educational experiences.

Hoboken, New Jersey, where I live, is home to a significant number of economically disadvantaged students. I began to seek collaborative relationships between ASAT and other local organizations which focused on poverty. The common thread was the importance of providing children with meaningful, socially valid and effective opportunities to realize their fullest potential despite the myriad obstacles that they face. That resonated well with me as someone whose career focuses on the treatment of ASD. To date, my fundraising efforts have benefited four Hoboken-based organizations combating the barriers associated with poverty.

SB: I would like to go back to your reference about public school programs. In your view, what are some of the key elements of a high quality education for students with autism?

DC: This is such an important question! In a nutshell, a high-quality education would include the following elements:

  • Be truly individualized – An educational plan should truly fit the child like a glove fits a hand. Services should not be about what a provider likes to do, but rather what the student needs, as determined through ongoing, valid assessment.
  • Be comprehensive – A high quality education targets the full array of skills that will promote success at home, school and community and uses a wide range of techniques based on science that are well fitted to the skills being targeted.
  • Keep the future in mind when selecting goals – The skills needed to be successful and marketable in the next setting (be that a particular job or even Mr. Walker’s 4th grade classroom) must be identified and addressed.
  • Use well conceptualized behavior management strategies – When addressing challenging behavior, these strategies should take into account the underlying function of the behavior, include carefully selected antecedent and consequence based supports, and build skills to help students better meet their needs in a way which promotes their day-to-day independence and opportunities.
  • Consider and offer inclusion opportunities carefully – Ensure that it occurs with the appropriate supports and is delivered by adequately trained staff. Social skill development does not occur through pure exposure alone; rather, skill acquisition occurs when inclusion is approached as a systematic, individualized process, with proper supports, monitoring of data, and a goal of challenging the individual with ASD while not overwhelming them, or inadvertently creating isolation.
  • Carefully implement instruction, including modifications and accommodations – Promote early success and carryover, identify and use powerful motivators, and consider how to motivate students to work hard, to learn new skills, and to minimize frustration.
  • Allocate resources thoughtfully – Intervention and teaching-team members need solid training in order to implement teaching procedures and services. Regularly scheduled team meeting promote coordination, particularly when multiple disciplines are involved.
  • Engage parents – Not only is it important to continually seek input from parents about treatment priorities and goal selection, parents benefit from the training, collaboration, and information that will enable them to embrace their role as a co-pilot in their child’s intervention. This support should include siblings, grandparents, and other significant individuals for whom parents consent to their involvement. Engagement should occur throughout the educational journey and be adjusted to face the unique needs and challenges at each point in time.
  • Take data collection seriously – Ongoing data collection enables one to objectively assess progress, make timely adjustments, and remain accountable to those we serve. No provider should get a “pass” on data collection.
  • Start early and get it right from the start! – We know that early intervention can make an incredible difference. Don’t squander precious time on interventions that are not time-tested and research based.

SB: You’ve been instrumental in implementing change in many aspects of our field of ABA and ASD treatment in general. Do you have your thoughts on two or three areas that you think need to be addressed differently? How can we improve our work there?

DC: There is certainly room for improvement. Promoting science and science-based interventions such as ABA is not an area in which we have been very successful. Media representations tend to favor less science-based treatments, perhaps because their promoters use more sensationalized language when describing both their methods and their outcomes. Behavior analysts must take a closer look at how they market their work so that their outcomes can be more understandable and appreciated by various stakeholders (e.g., media, funding sources, consumers). We must also be more proactive in helping the media approach autism treatment in a more accurate manner.

Autism is clearly a spectrum disorder. In recent years, we have seen many higher functioning persons with ASD who have been very vocal; generously sharing their views about the appropriateness of treatment. Although their views and perspectives are important, I worry that the public, policy makers, and other important stakeholders may take these views as applicable to the entire spectrum. I believe this has the potential to do parents a tremendous disservice when they try to acquire the resources, tools, and experiences which will enable their son or daughter (who may not be on the upper end of the spectrum) to realize his or her fullest potential. On the other hand, one important take-away message is the importance of cultivating and celebrating the strengths of individuals with ASD rather than approach our work from a pure deficit model.

Another significant concern is that the hundreds of thousands of children with ASD who were diagnosed in the last two decades are growing up and becoming hundreds of thousands of young adults with ASD; as a society, we are failing them. When children with ASD turn twenty-one, funding for services drastically changes. As a result, there are very few quality programs for adults. We are facing a crisis in the field, with a scarcity of services for adults with ASD and the absence of a clear strategy for closing the gap between the ever-increasing need, and an unprepared supply of resources. Autism awareness must include important conversations about how we can help adults with ASD live and work independently, develop meaningful relationships, reduce challenging behaviors that may limit opportunities, access faith communities, and enjoy the array of recreational pursuits which are available within their communities. Those are important conversations to have and these conversations should translate into actionable items at every level of service delivery.

SB: With Autism Awareness month drawing to a close, what would you like the general public to know about autism treatment?

DC: Even though ASD is no longer the rare disorder it once was, each person with ASD is unique. Efforts to help them realize their fullest potential should be individualized to meet the specific needs of each individual with ASD across settings such as home, school, community and the workplace; and informed by input from the individual, as well as his or her family.

Do not believe everything you hear. There are dozens of purported “miracle cures” and “breakthroughs” for ASD which receive widespread media attention, even if they have not been proven effective. Sadly, effective treatments rarely gain media attention.

On a related vein, do not believe everything you read. Not all information on the internet is reliable and accurate, and celebrities are neither trained nor equipped to define or guide ASD treatment even though many appear comfortable in that role. On the other hand, there is a large body of research published in peer-reviewed scientific journals which should guide autism treatment. Visit our website to learn more at www.asatonline.org.

Lastly, there is hope and tremendous opportunity. With the right treatment, individuals with autism can lead happy and fulfilling lives. Research indicates that interventions such as ABA can effectively help children and adults with ASD realize their fullest potential. As stated earlier, we know that early and intensive behavioral intervention can make a huge difference, both with respect to human potential and significant cost savings across the lifespan.

SB: How can the general public make a positive difference?

DC: It cannot be overstated that it takes a village to help individuals with ASD learn to enjoy and benefit from all that their communities have to offer. Every member of the public can make a difference in supporting individuals with ASD and their families. There are so many positive ways the public can help. Although I will share several examples here, this list is by no means exhaustive:

  1. If you have a family member or a neighbor who has a child with ASD, ask specifically how you may be helpful (e.g., assist with siblings, offer play dates, help with transportation to therapies, or provide an empathic ear).
  2. If you see a family struggle in the community, do not stare, comment, or judge. In some cases, it may be appropriate to go over and assist (e.g., “I see you are helping your little guy, may I help you put your bags in the car?”). Family members may take you up on your kind offer or may just decline.
  3. If your children are interested, inquire if there are opportunities for them to help classmates with ASD at their school (e.g., becoming a lunch buddy, peer tutor). This is particularly beneficial in the later grades when opportunities for students with ASD to interact meaningfully with their typically-developing peers is lessened.
  4. At school board meetings encourage board members to learn about best practices in special education which are scientifically validated. Inquire if special education resources are being spent on interventions that lack scientific support or are not being spent on those that do possess such support (e.g., ABA). In fact, a research basis should inform most decisions.
  5. Some faith communities are very welcoming to families of individuals with ASD, whereas others are not. Discuss this within your place of worship. Identify steps that can be taken to help individuals with ASD participate in their religious communities in a positive and meaningful manner. This applies to both religious ceremonies, as well as day to day participation.
  6. Encourage organizations to be more accepting of persons with ASD and to take appropriate steps to learn how to create meaningful inclusion opportunities (e.g., seeking out information, soliciting training and education, learning from others who are doing this with success).
  7. If you are involved with youth sports or other extracurricular activities, offer to coach and/or mentor a player with ASD.
  8. Encourage your town or city to provide and/or create recreational opportunities that include individuals with ASD as there is often a tendency to focus only on separate experiences.
  9. Support ASD organizations that put science first. Research how your donations are used.

ABOUT DAVID CELIBERTI, PHD, BCBA-D

DCelibertiDr. David Celiberti is the Executive Director of the Association for Science in Autism Treatment (ASAT). He previously served as the President of the Board of Directors of ASAT from 2006 through 2012. In response to the increasing number of parents attending professional conferences to learn about applied behavior analysis, he also founded the Parent-Professional Partnership SIG for the Association for Behavior Analysis International in 2000 and served as its Co-President until 2014. He had also served as President of the Autism Special Interest Group (SIG) from 1998 to 2006. He currently sits on a number of Advisory Boards in the area of autism, as well as in early childhood education. He has organized fundraising initiatives to support afterschool programming for economically disadvantaged children in Northern New Jersey. Dr. Celiberti is in private practice and provides consultation to public and private schools and agencies in the U.S. and Canada. He received his Ph.D. in clinical psychology from Rutgers University in 1993. He has authored several articles in professional journals and presents frequently at regional, national, and international conferences. He has taught courses related to ABA at both the undergraduate and graduate levels, supervised individuals pursuing their BCBA and BCaBA, and in prior positions had conducted research in the areas of applied behavior analysis, family intervention, and autism.

Understanding Autism: Tips for Teens by a Teen by Alexandra Jackman

We’re excited to feature some tips for teens from Alexandra Jackman on what it means to understand autism and the perspectives of their peers with autism. You may remember Alex from last year, when we shared an exclusive interview from our BCBA Sam Blanco with Alexandra Jackman. Alex is a 15-year-old New Jersey teen and the creator of the documentary A Teen’s Guide to Understanding and Communicating with People with AutismShe’s also been awarded Hasbro and GenerationOn’s scholarship grant for being a “Community Action Hero” and making a difference in her community through hands-on service projects that create awareness for important social issues. Congratulations, Alex!


Understanding Autism: Tips for Teens by a Teen
by Alexandra Jackman

During summer camp when I was eight, I met a girl named Jaime. I noticed that at lunch she always sat by herself with an aide. I assumed she wanted to sit alone, because she never came and sat with the rest of us. One day I was curious, so I hesitantly asked if I could sit with her and the aide replied “yes.” I learned that Jaime had something called cerebral palsy. She couldn’t speak but communicated through hand signals.

Jaime and I started hanging out outside of camp activities, and I really liked her. Just because communicating wasn’t her strong suit didn’t mean that she couldn’t be a friend. I think our friendship helped others in the camp group realize, “Oh, we can hang out with her,” and they started including Jaime in camp activities.

That was the first time I realized that many people don’t take the opportunity to get to know people with special needs. I almost didn’t. If I hadn’t been curious that day, I would have most likely missed out on the opportunity to get to know someone I really liked.

Knowledge Matters
I think knowledge is so important. As a 15-year-old autism advocate, I often notice how other teenagers interact with people with special needs in my school and in my community. I have found that teens (and adults) often ignore their peers with autism not to be mean, but because they do not understand what is “wrong.” People don’t know what to say because they don’t understand what is different. I think that it is important to change this.

Fortunately, there are many resources to teach people about autism. However, very few of those resources teach middle and high school students about special needs. So, as a teen, I have some tips that I think can help spread autism acceptance and understanding to hormonal, moody, creative, curious teenagers. Well, people kind of like me.

While not everyone with autism will have all of these behaviors, these general tips are important to keep in mind whenever you are speaking, studying, hanging out, or working with a classmate or friend with autism:

Be direct: Social cues can often be difficult for people with autism. It’s kind of like texting in real life. When someone texts “What?!” are they angry, excited or disappointed? Do ALL CAPS always mean that someone is yelling at you? Many people with autism cannot always distinguish the tone of what others are saying to understand the emotions behind words. Imagine how much harder it would be to interact with people if everything said to you was said with a monotone voice and blank facial expression. So, when talking to people with autism, try to say what you mean and be straightforward.

Be specific in your communication. Avoid open-ended questions: It is important to realize that for many people with autism, a question like “Do you want to go hang out in town with me?” can be overwhelming, because there are just so many possibilities. Maybe you are going to Starbucks, a diner, or shopping. Maybe you are going to the doctor’s office for a vaccination or to the dentist. What might be less stressful would be to specify exactly where you would be going. For example, asking something like “Do you want to come to the diner with me for lunch?” or “Do you want to go into town with me to see a movie and then go shopping?”

Don’t judge physical behaviors. You do similar things: Many people with autism make repetitive movements called self-stimulatory behaviors, such as flapping their arms or tapping things. Also known as stimming, these behaviors are a way to handle emotions and keep calm. While these movements might seem weird to you, everyone exhibits self-stimulatory behaviors that help them deal with stress. Do you ever bite your nails, twirl your hair, or bite on a pencil? Yeah, that’s stimming, and it’s how you handle your emotions.

Get past the disability and make a friend: Having an autism spectrum disorder is not who a person is, it is just something that they have. So don’t let autism define a person. Get to know who the person is on the inside. You just might meet someone you really like!

WRITTEN BY ALEXANDRA JACKMAN

Alex Jackman is a 15-year-old autism advocate and the writer and director of the documentary, A Teen’s Guide to Understanding and Communicating with People with Autism. A high school sophomore in Westfield, NJ, she is currently the peer mentor leader for monthly special needs teen nights and the founder of The Hangout Club, a program at her school to promote inclusion. She is also a special needs volunteer at the YMCA, The Friendship Circle, and Children’s Specialized Hospital. She has received a number of honors for her advocacy efforts and speaks to students, adults, and professionals throughout New Jersey and beyond about autism.

We’ve extended our Language Builder promotion! Save 30% and more!

Great news for those of you who might have missed our 3-day promotion for our Language Builder sets! We’ve extended our sale to last through next Tuesday, April 28th. Just use our promo code BUILDER15 at check-out to redeem these savings below on all of our Language Builder card sets until next Tuesday:

We’re offering a value bundle of the Language Builder Picture Cards and the Picture Noun Cards 2 together for only $155 (a $234 value)! You’ll be saving over $75 with this bundle! Just add the bundle to your cart—no promo code necessary.

 

Everyone’s favorite—the Language Builder Picture Cards—is a 350-card set that teaches key language concepts to children with autism or other speech and language delays. With vivid, beautiful noun cards created by a parent and professional experienced in the program needs of ABA, this set will foster receptive and expressive language skills. Get the individual set of the Language Builder Picture Cards for $149 only $110—just apply our promo code BUILDER15 during check-out!

We’re also letting you SAVE 30% on any of our individual Language Builder sets, Picture Noun Cards 2, Emotions, and Occupations.

The Language Builder Picture Noun Cards 2 is a 200-card set of photographic noun cards for building additional vocabulary in students who have mastered the original Language Builder Picture Cards. This set is great for labeling practice, as well as sorting, adjectives, functions, things that go together, storytelling and more.

 

The Language Builder Emotions Cards depict facial expressions and emotions by presenting various scenarios featuring men and women of various ages and ethnicities. This 80-card set will help students identify and discuss different feelings and emotions, inviting discussion about a range of emotions, why people may feel a certain way, and possible responses to these feelings.

The Language Builder Occupations Cards is a complete set of photographic cards that depict community workers, both male and female, in each occupation. There are 115 cards featuring 61 different occupations. Each photo is depicted in a natural setting with plenty of contextual clues and reinforcers illustrating that occupations are not gender specific. The set is ideal for teaching occupations, community helpers, gender labels, pronouns, storytelling and more.

*Promotion expires at 11:59pm EST on 04/28/2015. Not valid with any other offers. Be sure there are no spaces or dashes in your code at check-out!

Special Tours and Programs with New York City Museums for Children with Autism and Developmental Disabilities

New York City’s Museum of Natural History and Museum of Modern Art (MOMA) are introducing special tours and experiences for children with Autism.

The Museum of Natural History’s ‘Discovery Squad’ meets on select Saturdays for children ages 5- 14, accompanied by an adult, before the museum is open to the general public. Specially trained museum guides will lead a 40 minute tour through the North American Hall of Mammals (ages 5-8) or on an adventure through the Koch Dinosaur Wing.

For more information on the Museum of Natural History’s Discovery Squad, please visit their website here.

Each month the Museum of Modern Art’s program ‘Create Ability’ follows a different theme through the galleries to explore the art work and workshops to create in the classroom. These workshops are intended for individuals with developmental or learning disabilities ages 5-18+ and are free with pre-registration!

For more information on MOMA’s Create Ability programs, visit their website here.

 

Autism Awareness Month Interview Series: Getting the Services Your Child with Autism is Legally Entitled To with Gary S. Mayerson, JD

This week, our exclusive interview series with BCBA Sam Blanco features the renowned Gary Mayerson, JD, founder of Mayerson & Associates, the very first civil rights law firm in the nation dedicated to representing individuals with autism and related developmental disorders. In this interview, he reveals valuable advice for parents and caregivers on how to find and obtain the services their children are entitled to.


Getting the Services Your Child with Autism is Legally Entitled To
with Gary S. Mayerson, JD

SAM BLANCO: Can you address any common misconceptions related to IDEA or LRE?

GARY MAYERSON: The federal IDEA statute is governed primarily by what is “appropriate” for the student, as opposed to what is “best” or “optimal.” Unfortunately, the IDEA statute does not define the word “appropriate” and that confusion accounts for many of the conflicts that will arise between parents and school districts, who are obligated to provide a FAPE (a “free and appropriate public education”). On the other hand, LRE, otherwise known as “least restrictive environment,” is one of the few “maximizing” provisions in the IDEA statute. LRE is Congress’ mandate that students with disabilities be educated with their non-disabled peers to the “maximum extent appropriate,” even if doing so requires supplemental aids and services. The LRE mandate requires school districts to consider what is known as “the full continuum” and not rely upon “one size fits all” special education classrooms.

SB: What is the most important piece of advice you can give to parents as they begin the process of finding an appropriate school placement for their child?

GM: The best advice I could give parents who are just getting started is to seek out the best possible baseline of assessments and evaluations to tease out the strengths and challenges, identify and address any interfering behaviors, and hopefully get a good sense as to how their child learns, i.e., what kinds of programs are likely to be effective or not. Without the benefit of solid evaluations, the discussion at the IEP meeting will likely be relegated to “this is what the parents want.” When parents are able to provide quality evaluations, the discussion is elevated to “this is what professionals are recommending.” School districts are far more likely to take action based on the recommendation(s) of experts. Early intervention is always best. Accordingly, once evaluations and assessments are available to guide intervention, services should start ASAP. Parents of children diagnosed on the autism spectrum who are just getting started will find very useful information at www.autismspeaks.org. Autism Speaks offers an online “100 Days Kit” to help parents wade through the initial time frame following a diagnosis.

SB: Many parents struggle with the costs associated with autism. What advice do you have for them to alleviate some of the expenses?

GM: This is a thorny topic because even families with significant financial resources will struggle to pay for the daunting cost of effective programming where autism is the core disability. Today, most states (including New York) have enacted insurance reform, which means that many intervention services will be covered by private insurance, typically limited to an annual cap of approximately $40,000 or so. Parents should also consider obtaining home and community based services by filing for a “Medicaid waiver.” In addition to accessing insurance benefits and applying for a Medicaid waiver, families should register with early intervention (“birth to three”) and later, with their Committee on Preschool Education (3-5) and later, with their Committee on Special Education (5-21) to secure a public program. If, however, the public program is not appropriate or adequate, with timely advance notice, parents can file for a hearing to seek to obtain reimbursement or other funding for services and programming that is appropriate. Even short of a lawsuit, if parents are unhappy with the school district’s evaluation, they can request an “independent (private) evaluation” at the expense of the school district.

SB: Do you have recommendations for how parents keep track of records for legal purposes?

GM: Good record keeping is absolutely essential for parents. A great low tech, low cost method every parent should employ– keeping a $.99 notebook “log” of all your conversations with evaluators, school district personnel and providers. Everything important needs to be confirmed and documented in writing. This, however, does not mean sending a letter by certified mail. Faxes are just fine (but be sure to keep the fax transmittal confirmation), as are emails. Make sure to save every notice, letter and communication. For the IEP meeting, parents should either take good notes or, in situations where distrust has arisen, consider tape recording the meeting. Parents who observe schools that are being recommended by the school district also should record their observations, both good and bad.

SB: What resources do you recommend for parents to educate themselves about their legal rights?

GM: While there often is no substitute for seeking the assistance of an experienced attorney or other advocate, there actually are a number of good resources for parents to turn to in order to become better informed as to their child’s rights and entitlements. Parents, for example, will find useful information at www.wrightslaw.com and at www.mayerslaw.com. Our law firm invites parents to sign up for the firm’s quarterly informational newsletter. In addition, parents should carefully review the “parental rights” booklet that all school districts are required to provide in the context of the IEP process. Parents can also contact their local SEPTA or PTA. Finally, each state’s department of education will post, online, valuable information that parents can access free of charge, 24/7.

SB: Do you discuss estate planning for parents of children with special needs? When do you advise parents to begin making those plans?

GM: Parents of special needs children live with constant worry, knowing that they will not be able to live and protect their child forever. All parents–even those without any financial resources–should have a will that addresses estate planning issues, and the question of who will take over the parental role when the parent is no longer around to do so. Parents with financial resources, or who expect to come into money in the future, need to engage counsel to set up a “special needs trust” for their child—so as to allow the child to receive Medicaid and Social Security benefits without endangering the estate when such benefits are accessed. It is never too early to discuss estate planning issues, and too many parents overlook estate planning issues until it is too late. Parents also should timely commence guardianship proceedings well before the child reaches the age of majority (18 in most jurisdictions). Otherwise, a child who reaches the age of majority without a guardianship order may leave the jurisdiction and put themselves in danger with parents being left with little, if any, legal recourse. This is not to say, however, that obtaining guardianship is a given. Obtaining guardianship requires a showing, deemed acceptable to the court, that the child is incapable of making their own decisions.

SB: Can you describe legal considerations across the lifespan? For instance, what should the preschooler’s parents be considering as opposed to the teenager’s parent?

GM: The perspective and legal considerations when a child is a preschooler are different than when a child reaches his or her teens. While learning can and will continue into adulthood, most scientists and educators are in agreement that the same effort will produce greater learning, with a greater “rate of acquisition,” when the same child is younger. For this reason, judges and hearing officers are most comfortable “investing” significant public resources in the younger child. Because of the value of “early intervention,” parents need to obtain a diagnosis and classification as soon as possible. This means obtaining quality assessments that come with specific recommendations. Parents of children at the preschool age should thus timely receive the services and service levels that are being recommended by professionals. When the child enters his or her teens, that child still may require intensive services. However, as mandated by federal and state law, when a child is about to turn 16 (15 in New York), the IEP is supposed to shift into high gear with “transition” assessments, vocational training, and post-secondary outcomes. At all stages, parents should make sure that educators and service providers are promoting “generalization,” and that increased independence and self –sufficiency is the constant beacon on the horizon.

ABOUT GARY S. MAYERSON, JD

Gary Mayerson is a graduate of the Georgetown University Law Center and the S.I. Newhouse School of Public Communications at Syracuse University. In early 2000, Gary founded Mayerson & Associates as the very first civil rights law firm in the nation dedicated to representing individuals with autism and related developmental disorders.

Gary speaks regularly at national conferences and major universities and has testified before Congress on the subject of the federal Individuals with Disabilities Education Improvement Act (“IDEIA”). At the invitation of the United Nations, Gary spoke on the subject of facilitating inclusive education. Gary is well published in the field and is the author of How To Compromise With Your School District Without Compromising Your Child (DRL Books 2005), the “Legal Considerations” chapter appearing in the Second Edition of Dr. Donna Geffner’s book, Auditory Processing Disorders (2013), and the “Autism in the Courtroom” chapter appearing in the Fourth Edition of Dr. Fred R. Volkmar’s seminal treatise, Autism and Pervasive Developmental Disorders (2014).

Gary has been interviewed by the Today Show (NBC), Dan Rather (HDNet), Katie Couric, CNN, HLN, ABC, NPR, New York Magazine, the Wall Street Journal, Congressional Quarterly Researcher and the New York Times, among other media. In 2014, after being peer-nominated and vetted across 12 factors by an attorney led research team, Gary was named by Super Lawyers Magazine as one of the top attorneys in the New York metropolitan area.

In addition to the U.S. Supreme Court, Gary is admitted to the Second Circuit Court of Appeals, the Third Circuit Court of Appeals, the Fifth Circuit Court of Appeals, the Sixth Circuit Court of Appeals, the Seventh Circuit Court of Appeals, the Tenth Circuit Court of Appeals, and the Eleventh Circuit Court of Appeals.

Gary is responsible for more than sixty reported federal court decisions, including Deal v. Hamilton County, the very first autism case to ever reach the U.S. Supreme Court. Gary’s work also was instrumental in T.K. v. NYCDOE (bullying recognized as a “FAPE” deprivation), R.E. v. NYCDOE and C.F. v. NYCDOE (cases rejecting school district’s attempts to rely upon “impermissible retrospective evidence” at trial), T.M. v. Cornwall (least restrictive environment mandate as applied to ESY), L.B. v. Nebo School District (pertaining to “supported inclusion” and Congress’ “least restrictive environment” mandate), V.S. v. NYCDOE (parents have a procedural right to evaluate the school assignment) and Starego v. NJSIAA, a federal court settlement affording Anthony Starego, a 19-year-old high school placekicker with autism, an unprecedented fifth season of interscholastic competition (incredibly, that additional season had a storybook ending, with Anthony and his team going on to win the 2013 State Championship 26-15 after Anthony contributed points from two successful field goals!).

Gary has served on the national board of Autism Speaks since its inception in 2005 and founded its Federal Legal Appeals Project, a pro bono initiative at the federal level. In addition, Gary serves on the Boards of JobPath, a not-for-profit based in Manhattan that is dedicated to securing and supporting meaningful employment opportunities for adults with autism, and ALUT, Israel’s largest autism not-for-profit. Gary also serves on the Professional Advisory Board of the New England Center for Children (NECC), a residential school for students with autism located in Southborough, Massachusetts.

Gary testified before the New York City Council in support of “Avonte’s Law,” a safety enhancement measure introduced by Councilmember Rob Cornegy that, once fully implemented, will provide an additional layer of protection for students with autism who have a propensity to wander. Most recently, Gary and attorneys Maria McGinley and Jacqueline DeVore worked behind the scenes to help secure a conditional pardon from the Governor of Virginia for “Neli” Latson, a young man with autism, previously placed in solitary confinement, who is now receiving the therapeutic treatment that he needs.

What is Your Favorite Teaching Tool? Enter for a Chance to Win!

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We’re continuing the fun this week with another interactive giveaway for you! Share your response on Facebook (or privately in this form here): What is your favorite teaching tool? and be entered for a chance to win a $25 Gift Certificate to shop from our website and catalog!

We’d love to hear about your go-to teaching tool. More specifically, what is it, what age level is it primarily for, and how do you incorporate it into your teaching? What do you love most about this tool? Our community will be eager to hear your experience using this product and how your child or student has benefited from it!

How it works:

  1. Click on the “Enter Now” button above.
  2. You’ll be directed to the interactive submissions post on our Facebook page. (If you haven’t yet liked our page, go ahead and like it!)
  3. Leave your response in the Comments section of the post. And don’t forget to hashtag #AutismAwareness!
  4. If you prefer to share your response and feedback privately, use this online form here. Your response will automatically enter you to win a $25 Gift Certificate from Different Roads! One winner will be chosen at random.

Submissions will be accepted through next Monday, April 20, 2015. The winner will be announced on our Facebook page next week, so stay tuned!

*Different Roads to Learning reserves the right to remove or delete any submissions containing hate speech, profanity, personal attacks, and threats. We also reserve the right to remove or delete any comments containing spam or viruses, solicitations/advertisements of non-autism-related content, or the private information of individuals. We reserve the right to use private responses when announcing the winner of the sweepstakes.