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 Â– Autism Spectrum Disorder, AspergerÂ’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
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. IvaarLovaas 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.
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 stateÂ’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 childrenÂ’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 childÂ’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 armÂ’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 childÂ’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 ABCÂ’
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 RyanÂ’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.
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 RyanÂ’s Bill RyanÂ’s Law. It was truly a grass roots effort