Ryan’s Law grass roots gang efforts in SCThank you for your interest in the Ryan’s Law grass roots gang efforts in SC. By Lisa Rollins Attached is the copy of the bill and its entire history. You will note that the Senate passed it first (on the very last day of the session where it could still make the cross over to the House for debate). Champions of our bill in the Senate were, among others, Sen. Dave Thomas, (R) chairman of the Banking and Insurance Committee ( where the bill was assigned) , Sen. Joel Lourie,(D) Co-sponsor and staunch advocate from the very first day we spoke with him, Sen. Ray Cleary,(R )the primary sponsor of the bill along with Sen. Dick Elliott (D). 19 of the 45 senators actually co-sponsored the bill, and as you can see from the history, all of them ultimately supported it. In the House, champions were Rep. Skipper Perry( R) , primary sponsor and tireless advocate for our cause, Nathan Ballentine ( R), Tom Dantzler (R ), and Grady Brown (D). Well over 2/3 of the House also co-sponsored the bill, and all of them ultimately supported it as well. Note that although the governor subsequently vetoed the bill, he was overridden with a 100% majority in both the House and the Senate- well over the 2/3 majority required to pass the law. The bill requires insurance companies to offer coverage for individuals diagnosed with a pervasive developmental delay, which could be one of three types – Autism Spectrum Disorder, Asperger’s, or Pervasive Developmental Disorder Not Otherwise Specified ( PDD-NOS) Autism is defined in the Diagnostic and Statistical Manual IV as a spectrum disorder, and presents very differently in each child, but some common characteristics include- 1) abnormal or absent speech 2) adherence to rigid routines and stereotypical behaviors 3) lack of, or very poor social skills. There is no known cause for autism, and no cure, but there are effective treatments. For many years, a diagnosis of autism was a virtual death sentence for the child and family. There was no cure, pharmacological interventions were unsuccessful, and children ended up in residential group care facilities (like a nursing home) unable to support themselves or contribute to society. A 1987 UCLA study on young children with autism changed that paradigm, and gave children with autism a chance to function like other typically developing children. Dr. Ivaar Lovaas took two similar groups of pre-school aged children, all of whom had a diagnosis of autism. One group received 40 hours per week of intense one to one behavioral based therapies which took place over at least 2 years, and were administered by qualified providers of behavioral therapies ( i.e. board certified behavior analysts experienced in working with children with autism- see www.bacb.com for list of qualifications, list of certified providers). The second group received 20 hours or less of the same therapies over the same time frames. The results- 1) For the group who had received 40 hours per week, 47%, almost half, were completely indistinguishable from their typically developing peers, and were able to attend a general education class with no supports (i.e. no shadows, augmentative communication devices, etc). The other almost half were able to attend a general education class with some supports, and all made progress. Only a small percentage of this group, @ 2%, made minimal progress. 2) For the group who had received 20 hours per week, only 2% were indistinguishable from their typically developing peers, and the rest continued to need significant interventions and support. So what about the insurance industry and its position in SC and its stance on the autism issue? The insurance industry is hugely influential in SC in all arenas, and politics is no exception. The second most prevalent career in our state’s legislature (Attorney is the number 1 profession) is insurance. The insurance industry has many lobbyists and lots of money to contribute to political campaigns, and they are extremely visible at the State House and at all legislative after hours events. Our challenge as parents of children with autism was to educate our legislators about the need for this health care coverage, and to gain their support for these therapies, which average anywhere from 60,000 to $85,000 per year, and are completely non-covered therapies at this moment. The median income for SC families is @ $35,000, and the cost of these therapies is a catastrophic major medical expense which most families are totally unable to afford. Many families spend all of their children’s college funds, place first and second mortgages on their homes, move in with relatives, and literally go bankrupt trying to provide these therapies for their children. Depending on the age of your child at diagnosis, one parent has to quit their job, stay home and run the program full time. This means you lose your income and gain monthly expenses in the neighborhood of $5000 per month over the course of 3 years. Such was the case in our household. I quit my job of almost 20 years to stay home and run my child’s program, and current out of pocket expenses for this program are @ 4000-5000 per month. I am still at home running his program almost 2 and a half years later. We see our entire world in terms of before and after diagnosis, because our world and lives were forever altered by this change. I have 3 boys- ages 9, 5, and 3. My five year old, Walker, is the one with autism. I have attached a picture of us- he is the one with brown eyes. We have a 40 hour per week program, divided between home and school. Walker attends this program year round, which means he and we never get a break. I have therapists in my home from 8 am to 6 pm at least 5 days a week, and make up times are on the weekends. Many a Sunday morning breakfast has our family of 5 and several therapists at the table. Walker loves to hide, and does not answer when you call him, so he has to be always in arm’s length of an adult. This means you have to be constantly vigilant, as one of his favorite things to do is run out of the house and down the road, which he will do without telling you. We have all of the second floor windows nailed shut, and all doors have added security latches to keep him safe. Our home is safe for him, but almost nowhere else is, which means if you go to visit anyone, or go to any social functions, you must literally hold your child’s hand for the entire time you are there. I watch with envy other parents of typical 5 year olds who arrive at an outside barbeque and breezily turn their child loose, while they go get a cold drink and sit by the pool with the other adults. That is not my life. Walker has made huge strides in his communicative and social skills, and if he continues to progress at the same rate, is projected to be in that 47% of the Lovaas children who are indistinguishable from other typical kids. Walker can name his ABC’s, colors, shapes, numbers to 100, can write and say his name, and is starting to have the beginnings of spontaneous conversations. He loves to play with his brothers and cousins, enjoys jumping on the trampoline and swimming in the pool, and also likes dogs and horses. He can ride a small horse, and loves to color and build things with Legos. His favorite interactive game is Wheel of Fortune, and he likes to buy vowels. However, even on my worst days, I am more fortunate than the majority of families in our state who cannot get these life changing interventions for their children. The diagnosis of autism is performed by a physician specialist, a developmental pediatrician, and the medical community consensus is that the Lovaas behavioral therapies are the standard of treatment. In other states, there are medical facilities for families to get treatments for their children. In SC there are no such clinics for children to attend, because the insurance companies had argued, (up until this year successfully) that autism was solely an educational problem. We as parents, and ultimately the legislature, rejected this argument, and now the insurance industry will be required to offer coverage for those children with autism who are diagnosed by age 8. These children will receive treatments as prescribed by their treating physician, and there is a cap of $50,000 per year for the treatments. So, how did we do it? We started with 3 moms. We met for the first time in Dec of 2005 in the living room of Sen .Dave Thomas, and we spoke to him for about 2 hours about the problem and our proposed solution. He pledged his support that day, and we went back home to start the campaign .We gathered a lot of support from other special needs families and friends throughout the state. We conducted an intensive email, letter writing, and personal visits campaign focused to each of our constituent legislators, and we kept asking them to offer coverage for our children on the basis of it being the right thing and the economically sound thing to do. We sent pictures of our kids, we told our personal stories, and we even brought our children to the State House after the governor vetoed the bill. We packed the rooms at all of the public hearings, and most of all, we never gave up. My job was legislative relations. I went down to the State House every day it was in session and made personal visits to as many of the senators and representatives that I could find. Before starting this campaign, I did not know any legislators except my own House member, and at the beginning of the legislative session, I was literally holding a magazine with all of the photos of the legislators in it, standing in the State House rotunda, and trying to figure out which of these many men dashing by in suits was a legislator. I learned they are never in their offices, and they do not wear name tags. I ran up and down the State House steps 20-30 times a day so I could grab a moment with a Senator on the way to his session, learned where the best barbeque was, and even followed some on the way to the canteen or the restroom! Lorri Unumb, the author of the legislation, and for whose son the law is named- was also the person who planned and executed all of our strategic goals. She planned the public hearings, and brought in the subject matter experts from other states. She fielded the tough questions from the legislators and the insurance industry, and she was our chief negotiator. She wrote and sent out all of the many updates to the Ryan’s Law Grass Roots Gang to keep them informed, and insured the legislators got a barrage of contacts at the key voting times. She was stellar. Marcella Ridley, the 3rd mom, was in charge of our media relations campaign, and it was her job to provide all of the legions of studies showing the efficacy of the Lovaas studies to whoever needed them. That could be legislators, constituents, all media groups all over the state, and other groups such as small business, chamber of commerce, the medical community, etc. She and her husband, who is the lead emergency room physician at one of our major hospitals, also took the time to write personal letters to each of the 150 plus members of the legislature. Marcella co-ordinated many of the television and radio interviews, as well as the newspaper coverage. She did a masterful job. A fourth extremely important person in our campaign was a dad, Derrick Howle. He co-ordinated and collated much of the information on our parent and constituent matches. We wanted to have at least 2 constituent askers per legislator, which means we needed over 300 people who were willing to contact their legislators multiple times during the session. Derrick and his wife Sandrine tirelessly kept up with all of this information for our grass roots gang, and even watched the live feeds to see what was happening hour by hour in the Chambers sessions, as votes come up unexpectedly. Their support was invaluable. Please speak to each of these vital members of the Ryan’s Law Grass Roots Gang to learn more. It took all of these efforts by many dedicated parents, families, and friends, as well as the actions of the entire legislative body, to make Ryan’s Bill Ryan’s Law. It was truly a grass roots effort