This Government Relations post is by Lorri Unumb, Senior Policy Advisor and Counsel for Autism Speaks and Summit Organizer.
“People who work together will win, whether it be against a complex football defense, or the problems of modern society.” ~ Vince Lombardi
Spoken by Vince Lombardi, the words above have never been more true than during the past three years of work by the autism community to achieve autism insurance reform in twenty-three states. As the community plans and prepares for another legislative season in the fight for reform in all 50 states, volunteer advocates from twenty-six states gathered in Washington, D.C. last weekend for the 5th Annual Autism Law Summit.
This event, which was co-sponsored by Autism Speaks and the Virginia Autism Project, brought together sixty-plus parents, providers, researchers, lawyers, lobbyists, legislators, and other interested professionals pursuing autism insurance reform legislation to learn from one another and share strategies for success. Conversations included not only advice on how to pass autism insurance legislation, but also discussions on implementation in the 23 states where reform bills have already passed.
Attendees at the summit came from Arizona, Arkansas, California, Connecticut, Delaware, Florida, Georgia, Iowa, Kansas, Louisiana, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Montana, New Jersey, New Mexico, New York, North Carolina, Oregon, Pennsylvania, South Carolina, Vermont, Virginia, and Washington, DC.
Special guest speaker, Kansas State Senator Tim Owens, who championed a successful autism insurance reform bill in the Kansas legislature in 2010, spoke to the attendees on Friday about working with legislators. Senator Owens, himself a grandfather of two children on the spectrum, fought long and hard to bring about meaningful reform in his state. While Kansas is a green state on the Autism Speaks State Initiative Map, indicating that reform has been enacted, Senator Owens shared that he will not rest until all children in Kansas have access to insurance coverage for autism therapies.
Friday night brought one of the event highlights: a mock legislative committee hearing in the formal moot court room at the George Washington University Law School, where the Summit was held. Professor Greg Maggs, who is interim dean of the law school, welcomed participants to the GW community on Friday.
While the focus of the session on Friday was the passage of autism insurance reform laws, with nearly half the country having already enacted this legislation, the focus of Saturday’s session was a discussion of the implementation and enforcement of the laws. Saturday morning’s implementation panel was packed with great information for families and providers who are learning to access new insurance benefits. The panel was led by Dr. Gina Green, Executive Director of the Association of Professional Behavior Analysts, and featured lessons learned by providers from three of the earliest states to pass autism insurance reform: Susan Butler from the Early Autism Project in South Carolina; Dr. Billy Edwards from Behavioral Innovations in Texas; and Dr. Bryan Davey from ACCEL in Arizona.
Other Saturday highlights included:
- David Meador, the Chief Financial Officer of DTE Energy, discussing self-funded companies who voluntarily adopt an autism benefit, much as DTE Energy has recently done.
- Dan Unumb, attorney, providing an update on autism-related litigation, which is rapidly increasing in volume and scope.
- Lisa McHenry, the parent-plaintiff from Oregon who successfully sued her health plan for failure to cover her son’s ABA therapy.
- Dr. Jerry Shook, CEO of the Behavior Analyst Certification Board, discussing trends in training and credentialing of behavior analysts.
“That was a great conference,” said conference attendee Chris Supple from Massachusetts. “I really enjoyed it, learned a great deal, and brought home some great resource material.”
Hair salon owners decide they can make a difference (Blakeny, N.C.)
Pigtails and Crewcuts in Blakeney is a hair salon that caters to children, with a specific interest in serving children with special needs. Read more.
Law groups file class action on behalf of special needs students (The Louisiana Record)
Four Louisiana law advocacy groups announced their civil rights lawsuit against the Louisiana Department of Education (LDE) on behalf of special needs students in New Orleans. Read more.
Dog treats help teach disabled youths skills (Mesa, Ariz)
Armando Galvan, Brandon Ulman and A.J. Stroud are gathered around a table, engrossed in a task 20-something men typically do not perform: kneading, rolling and cutting dough. Read more.
‘Perfect’ school for autistic son faces shutdown (Canada)
Some days, after school, Carrie Cassidy’s autistic son will wander off by himself and worry her until he’s back in her sight. The other parents and children at Champlain Heights Annex know her son, Stuary Isnardy, and help keep an eye on him. Read more.
Home worker suspended over alleged assault (UK)
AN investigation is under way into the alleged assault of an elderly resident at a North-East care home. Read more.
NAPERVILLE, ILLINOIS- Little Friends recently teamed up with NBC’s newest home improvement show, “George to the Rescue,” to complete a home makeover for a well-deserving Lisle family. Patti Boheme, executive vice president of the Little Friends Center for Autism, served as an autism consultant for the episode, which is scheduled to air at 11 a.m. on Sunday, October 31 on NBC 5 Chicago and in other major cities.
The 30-minute show is hosted by home improvement expert George Oliphant who visits families that are dealing with extraordinary challenges, in hopes of improving their homes and lives. This particular home makeover was for the benefit of Theresa and Mersim Kosovrasti and their three sons, Philip, Danny and Alex. The family was nominated for the show by Theresa’s best friend, Dia Rizmani who understands this families struggles.
The Kosovrasti’s oldest son, Philip, now 13, was diagnosed with lymphoma at the age of 2. After extensive chemotherapy and radiation, Philip underwent a bone marrow transplant made possible by his brother Danny, who was just 9 months old and has autism. Philip has been in remission since 2000, but still faces some health struggles as a result of his cancer treatments. Danny, now 11, was diagnosed with severe autism at the age of 3. Danny attends a therapeutic day school and lives at Little Friends’ Lifeskills Training Center for Children with Autism during the week. The Kosovrasti’s youngest son, Alex, 7, was also diagnosed with autism at the age of 4.
Demolition work got underway at the Kosovrasti’s Lisle home in late September. Dozens of volunteers from the Illinois Homebuilders Association donated their time to convert the family’s garage into a sensory room and bedroom for Alex and Danny, and redesigned an upstairs bedroom for Philip. Boheme worked with the project’s contractors to design the colorful sensory room for Danny and Alex. The new room features a sensory swing, a marble panel and fiber optic mats, courtesy of Southpaw Enterprises. The boys’ sensory room and bedroom also features several visual picture systems, designed by the Little Friends Center for Autism.
Crews from the NBC show were on hand on October 13 to unveil the finished project to the family and to thank all of the volunteers who helped to make this local home makeover a reality.
“There is nothing more rewarding than helping deserving families and making their home improvement dreams a reality,” said Oliphant. “I’m thrilled to use my skills to help touch people’s lives, and I’m incredibly grateful to the various local designers and contractors who are generously donating their time and resources to help make these important renovations a reality.”
About the Little Friends Center for Autism
Building on its more than 30 years of experience in providing educational, therapeutic and residential services for both children and adults with autism, Naperville-based Little Friends launched a new initiative in 2004 aimed at expanding a range of resources for this growing population. The Little Friends Center for Autism (LFCA) was founded around a core staff with years of expertise in working with adults and children on the autism spectrum. Today, the Little Friends Center for Autism is nationally recognized as a comprehensive “one stop” resource for autism and provides cutting-edge diagnostic evaluations, training. occupational and speech therapy, consultation services for parents and professionals, ABA, social skills groups, counseling and educational materials.
About “George to the Rescue”
“George to the Rescue” debuted in the popular LX.TV program “Open House”, which airs weekends on the NBC Local Media Stations. It has been expanded to a special half-hour program for the duration of its six-episode run. “Open House” airs weekends on the NBC Local Media stations and via national syndication by NBC Universal Television distribution.
Little Friends has been serving children and adults with autism and other developmental disabilities for over 40 years. Based in Naperville, Little Friends operates three schools, vocational training programs, community-based residential services and the Little Friends Center for Autism. Founded in 1965, Little Friends serves more than 800 people each year throughout DuPage, Kane, Kendall, Will, McHenry and western Cook counties.
Police recover van fitted for boy with autism, wheelchair still missing (St. Paul, Minn.)
St. Paul Police have recovered the van stolen from a family that uses it to take their autistic son to the doctor. Police say a driver noticed the van traveling near Western and University Aves. Monday afternoon. Read more.
Positive Education Program has opened a state-of-the-art $8 million autism center on the west side of Cleveland. It will offer education and family support to up to 110 children in grades K to 12. Read more.
You can see it on their faces as they come into the studio — they are thrilled to be there. Girls and boys dressed for dancing, tying on dance shoes and imitating the moves of their teacher in front of the mirror in a long, airy room. Read more.
Accelerations Educational Software (AES), a developer of software programs for children with autism and other learning disorders, is pleased to announce its expansion into over 1,000 public school districts nationwide. AES has also been able to provide its autism software to nearly 300 private schools, thousands of homes and several foreign markets. Read more.
When he entered the Times Colonist’s So You Think You Can Write contest, English teacher Dean Norris-Jones hoped he wouldn’t embarrass himself in front of his students. Read more
Mom honored for autism fight (Cincinnati.com)
Jennifer Brown remembers the summer day in 1977 when her son was diagnosed with autism. “Back then, they were still saying autism was caused by poor parenting,” says Brown, who lives in Evendale. “They were still calling parents ‘refrigerator mothers.’ ” Read more.
Okla. gymnastics center lets autistic kids tumble (Norman, Okla.)
Within the last few months, Bart Conner Gymnastics Academy has developed a growing fanpage among a network of 10 at Lincoln Elementary School. Read more.
Stormy Stories of Children with Autism (Philippines)
I was frantically texting and calling Gio’s yaya. While my youngest son and I were dry and comfortable in my mother’s QC house, the water in our Cainta home reached eight feet high during Ondoy. Read more.
‘I just can’t believe it’: Chrysalis award winner (Canada)
Shelley Sinner doesn’t have to go to work, she gets to go to work. She never imagined getting an award for something that brings her such joy, but she’s “very proud” of herself nonetheless. Read more.
White Castle’s Popular Original Slider®-Scented Candles Returns for the Holiday Season (Columbus, Ohio)
White Castle announces the long-awaited return of its steam-grilled-on-a-bed-of-onions Original Slider®-scented candles for the holiday season. Starting at midnight (EDT) on October 27, the candles will be available online only at www.houseofcrave.com, White Castle’s online store, for $13 plus shipping. Read more.
California State University-Northridge’s volunteer program called Unified We Serve is partnering with Autism Speaks U for their campus-wide challenge to support those affected by autism. Their challenge, which is called Unified4Autism, is aiming to get 50 different school teams (both students and faculty) to participate in fundraising or awareness events throughout the year. They will also be forming a college Walk team at their local Walk Now For Autism Speaks event.
California State University-Northridge’s (CSUN) events range from loose change campaigns, to hot dog fundraisers to jewelry parties. One of their most recent events had the poplar band LMFAO perform where they had a booth selling glow sticks to benefit Autism Speaks. In addition to spreading autism awareness, the event raised $1,693. Phillip Hain, the LA Walk Director, attended the check presentation on campus. To read more, click here.
CSUN’s United Sorority and Fraternity Council (USFC) organized an “Art for Change” event, which was a puzzle piece art campaign that raised $400 by having students donate pocket change. Marielos Renderos, activities director for the USFC, helped organize this event and coordinate with each organization within the USFC to submit a piece of art, for a total of 12 pieces. Click here to read more about students bringing autism awareness through art.
Autism Speaks U is a program designed to engage college students across the country in autism awareness, advocacy and fundraising efforts. Its new website offers a wide range of tools to empower students to establish Autism Speaks U chapters, organize events, and encourage their peers to get involved. College students, faculty and alumni can get involved with Autism Speaks U by visiting www.autismspeaks.org/u.
Penn Hills Man With Autism OK After 7-Hour Search (Penn Hills, Penn.)
An extensive search for a missing man came to an end early Friday morning after he turned up OK in Penn Hills. Read more.
Rumer has it (Ireland)
New soul-jazz sensation Rumer addresses the family scandal that nearly overshadowed her music, finding fans like Burt Bacharach and her Irish roots with Ed power. Read more.
Animal welfare expert with autism to speak at KSU (Manhattan, Kan.)
A leading animal welfare expert who has autism will speak about her experiences next month at Kansas State University. Temple Grandin was the subject of an HBO movie that won several Emmy awards this year. Read more.
Parents’ emotional plea for care respite (Brimbank Weekly)
Horror stories abounded at last week’s disability forum for the western region, held 42 days out from the November 27 state election. Read more.
Young adults get help to fit in (Reporter News)
Chris Rodgers was diagnosed with Asperger’s syndrome while in high school. Read more.