Blessed with Autism and Christina N. Peck

Today’s Disabilities Leadership Council spotlight is on the organization Blessed with Autism (http://www.blessedwithautism.com/) and its founder, Christina N. Peck. The organization helps parents of children on the autism spectrum recoup the considerable costs of therapy from their health insurance providers. In a recent interview, Christina explained why it is so difficult for parents to get these services paid for by insurance. Most of the providers of these services, which include speech therapy, physical therapy, occupational therapy, and behavioral intervention, are not in any of the health networks set up by major health insurance providers. Since they are out-of-network, parents have to pay for the services up front and out of their own pocket, and can only recover costs if their plans include out-of-network benefits. These costs are especially difficult to recoup if parents don’t have a PPO insurance plan. Christina said, “It is easier to recoup costs from private insurers than from Medicaid; you can go out of network.” Parents with an HMO can also find it tough to get reimbursement; Christina said that these parents “should get new [private] insurance. In the long run, the therapy can cost $90,000 and with this insurance you can get back maybe $50,000 of that.” Christina said that employer-provided PPO plans allow one to recoup many of the costs of therapy. This entire system is made even more difficult by the fact that there are many differences in plans not only from company to company, but even within different plans of the same company!

Christina explained how parents can claim reimbursement for their child’s therapy. She said, “The key is diagnosis codes for the type of therapy. You have to code for the medical condition being treated, not for autism. Quite often, providers don’t even put the billing codes on the bill. Parents must submit the bills and proper forms to their insurance company using codes provided by Blessed with Autism. If you submit a bill that is coded for autism, there is no chance of receiving reimbursement.” Coding for the medical condition means that the bill will be coded for the specific problem being treated, not autism. For example, for speech therapy, the bill would be coded as treatment for a speech impediment, not as treating for autism.

Christina’s book, Blessed with Autism, contains all the details on how to deal with different kinds of insurance and what the different codes and procedures are to deal with every type of therapy and treatment. The book is available on her website, http://www.blessedwithautism.com/. Christina’s hope is that, using the book, parents can complete the entire process on their own. For those parents who need help, Christina’s colleague Yvonne McNamee runs a consultation service through the Blessed with Autism website. Christine said that her main goal is to “empower people to do it themselves.”

Spotlight On: National Autism Association-New York Metro Chapter

The Disabilities Leadership Council is focusing today on the New York Metro Chapter of the National Autism Association (http://www.naanyc.org/). Unlike many other non-profit organizations, the main focus of the chapter is not on fundraising for families, research, and advocacy. Instead, its mission is to “educate and empower those in the Autism community.” In a recent interview, Sabeeha Rehman, the president of NAA-NY Metro, explained that the chapter is distinct in that “we work closely with families and parents that have been affected by autism. We are a parent-centered group that seeks to educate and support parents.” She also talked about how the chapter provides this support in four main ways. The chapter holds two sessions every month, each with a different purpose. One session is an educational session, in which the chapter brings in a nationally recognized expert to talk about an issue related to autism. Recent issues included the Tomatis therapy system, financial planning, and applied behavior analysis (ABA) treatment. The second session is a Parent Network Exchange Meeting, in which parents participate in a discussion moderated by an expert facilitator. At the latest meeting, the facilitator was an expert in Relationship Development Intervention, another type of therapy for children on the autism spectrum. These sessions are also designed to help parents network with each other. According to Mrs. Rehman, NAA-NY Metro is rolling out a third monthly session starting this September, which will be a support group moderated by a social worker. The chapter also runs a parent mentoring program called NAAvigators, where parents who have expertise and experience act as mentors to families who are new to the autism community. The mentors help them navigate through all the complexities surrounding having a child with autism. Mrs. Rehman said, “This program of one-on-one assistance really helps families cope.”

When asked about how effective the chapter has been so far, Mrs. Rehman said, “We have been very effective. Through our initiatives we have been able to educate parents on a broad range of topics, such as different treatment modalities.” After 18 months of existence, the chapter now has about 600 members, both families and individuals. She also talked about how the organization is active in the media: “We are solicited by the media each time there is a breaking story on autism.” Mrs. Rehman also explained how active the chapter is in lobbying for or against legislation in Albany. While the chapter is restrained by finances from launching big campaigns for or against various pieces of legislation, it does inform its members about pending legislation and urges them to email their local representatives echoing the chapter’s position on it. The chapter is also part of a statewide coalition of autism organizations who pool their resources to support bills already on the floor and try get others introduced.

The NAA-NY Metro Chapter has its own website and blog, where you can get more information on the organization and on past and upcoming events. Disabilities Leadership Council founder Stuart Flaum said, “NAA-NY Metro is very forward-thinking. Their seminars and sessions present outside-the-box solutions, which are the type of solutions we’re looking for too.”

Spotlight On: Rethink Autism

Today, the Disabilities Leadership Council is continuing its series highlighting organizations which provide services to individuals with disabilities and their families by focusing on Rethink Autism. As stated on their website, Rethink Autism’s mission is to “offer parents and professionals immediate access to effective and affordable Applied Behavior Analysis-based treatment tools for the growing population affected by autism spectrum disorders.” Rethink Autism delivers these tools, which are based on the latest scientific research into ASD, through its website, www.rethinkautism.com. This approach allows for more effective treatment, as a child’s progress can be tracked by numerous individuals (including both family members and professionals) from any computer that has an Internet connection, anywhere in the world. According to its co-founder and CEO, Daniel Etra, the company was founded to “take such science-based best practice programs only available in a limited capacity, turn the model on its head, and use technology and the internet to make these programs available to any family or professional no matter where they are located. We also made sure to remove clinical jargon and translate these programs into a language that’s easily understandable by anyone.” Mr. Etra also said that he decided to start Rethink Autism when, after talking with friends with family members on the autism spectrum, “it became clear what a tremendous problem it is for families to find access to effective and affordable services.”

Rethink Autism is truly innovative, with a totally fresh approach to autism education. For $100 a month, families receive unlimited access to four essential services: a customized Applied Behavior Analysis (ABA) curriculum, video based lessons, automated scheduling, and progress tracking. Parents and professionals use the website to customize programs for their children based on their specific needs. The ABA method is at the heart of Rethink Autism’s offerings. According to Mr. Etra, ABA “is the only treatment methodology recommended by the American Academy of Pediatrics (AAP), the US Surgeon General, the National Institute of Health and other organizations…The problem with ABA is the limited supply of trained professionals and the tremendous cost of such treatment. The AAP recommends a minimum of 25 hours of ABA intervention a week, but the only way a typical family will be able to meet this number is if whoever is physically spending time with the child uses that time to implement intervention exercises. This means that babysitters, siblings, family members, etc. must all be part of the treatment process; and the only way they can do so is to be taught how to implement.” Automated scheduling helps parents and professionals keep track of their teaching curricula at various stages of completion. Through this tool, Rethink Autism will also recommend certain lessons for children. Lastly, progress tracking is a vital tool in the treatment of ASD, and in this field Rethink Autism has excelled. Their website makes it easy to upload the results of lessons in various categories and track a child’s progress in each of them. Thus, it is easy to pinpoint areas in which the child is doing well and areas in which he or she needs improvement. The areas in which the child needs improvement can then be focused on by a therapist or other professional.

Rethink Autism is truly a pioneering company; its approach has totally changed the way professionals think about autism education, and has challenged older thinking about how to most effectively treat children with ASD. Rethink Autism is also unique in putting tools in the hands of parents at a low cost, so that in the same price as an hour or two with a therapist, a family can have unlimited access to a vast array of teaching tools. The Disabilities Leadership Council believes that the work of Rethink Autism advances our own mission, to find solutions for individuals with disabilities. Like the Council, Rethink Autism combines expertise from many fields; Mr. Etra said, “We have assembled an expert team across three key disciplines – video production, technology, and treatment.” Council Founder Stuart Flaum said, “Rethink Autism has moved beyond older, failed methods and has developed effective solutions by combining science and technology.” By employing this approach, the Disabilities Leadership Council hopes to find more solutions to other problems facing individuals with disabilities.

To read the full interview with Daniel Etra, CEO of Rethink Autism, please visit docs.google.com/View?id=d56tc3v_0fsrxs3db