Webinar #32 – Let Me Hear YOUR Voice: Effecting Change through Effective Advocacy

Here are our introductory comments: 

Today’s talk is entitled “Let Me Hear Your Voice: Effecting Change through Effective Advocacy” and is presented to us by Lorri Unumb Esquire, the CEO of the Council of Autism Service Providers. Lorri’s career in law began at  the University of South Carolina where she earned degrees magna cum laude in broadcasting and political science and was awarded a full scholarship to USC Law School, where she graduated with honors.

Lorri’s advocacy in autism was inspired by her personal experience of being a mother to a child with autism as her oldest of three sons, Ryan, has autism. In 2005, she wrote ground-breaking autism insurance legislation for South Carolina (“Ryan’s Law”) that passed in 2007 and served as the catalyst for the national movement toward autism insurance reform.

Following the passing of Ryan’s Law, Lorri worked at  Autism Speaks where she served for more than a decade as Vice-President for State Government Affairs. Lorri oversaw advocacy initiatives in all 50 states and was responsible for spearheading the autism insurance reform movement, which led to 49 states requiring meaningful health insurance benefits for autism, including Applied Behavior Analysis coverage.

In 2019 she became the CEO of the Council of Autism Service Providers which advocates for best practices in autism services.These are just a few highlights in Lorri’s long and celebrated career. In addition, she has founded the Unumb Center for Neurodevelopment which provides services to people with autism in South Carolina. She and her husband, Dan, wrote the first-ever comprehensive textbook on legal issues related to autism, entitled Autism and the Law. She has won numerous awards for her contributions to autism advocacy including the Autism Society of America 2008 Parents of the Year Award; the Behavior Analyst Certification Board’s Michael Hemingway Award; and the California Association for Behavior Analysis 2012 Leadership in Law Award.

We could not be more thrilled to have such a high-impact speaker here with us today. About 50% of people who receive a SynGAP1 diagnosis will also receive a co-diagnosis of autism spectrum disorder. Lorri has spoken with Syngap Research Fund advocates in the past about advocating for proper treatment of our loved ones and is aware of the unique challenges we face as a community.

THIS IS FOR TRANSCRIPT ONLY:

0:05Welcome everybody to our next webinar for SynGAP  Research Fund. We’re really excited to continue  

0:13our SRF webinar series. The goals of our series  are getting families closer to the science,  

0:18making families aware of the research that has  been done and opportunities to participate,   empowering communications with our clinicians  and equipping families to advocate for the  

0:27needs of your loved one with SYNGAP1. We  want to share with you our next webinar   which will take place next Thursday May  13th at 10 a.m. pacific time this will be  

0:35with Dr Kurt Haas and is entitled “Functional  assessment of missense variants of SYNGAP1”.  

0:41You can sign up for all of our future webinars and  view past presentations at syngapresearchfund.org.  

0:46Today’s talk is entitled “Let me hear your voice:  affecting change through effective advocacy” and  

0:52is presented to us by Lorri Unumb esquire the  CEO of the Council of Autism Service Providers.  

0:59Lorri’s career in law began at the University of  South Carolina where she earned degrees magna cum  

1:04laude in broadcasting and political science and  was awarded a full scholarship to USC Law School  

1:10where she graduated with honors. Lorri’s advocacy  and autism was inspired by her personal experience  

1:15of being a mother to a child with autism as  her oldest of three sons Ryan has autism.  

1:21In 2005 she wrote the groundbreaking autism  insurance legislations for South Carolina known  

1:26as Ryan’s Law that passed in 2007 and served  as the catalyst for the national movement  

1:32towards autism insurance reform. Following the  passing of Ryan’s Law Lorri worked at Autism  

1:37Speaks where she served for more than a decade  as vice president for state government affairs.   She oversaw advocacy initiatives in all 50 states  and was responsible for spearheading the autism  

1:48insurance reform movement which led to 49 states  requiring meaningful health insurance benefits for  

1:54autism including Applied Behavior Analysis  coverage. In 2019 she became the CEO of  

2:00the Council of Autism Service Providers which  advocates for best practices in autism services.  

2:06These are just a few highlights in Lorri’s  long and celebrated career. In addition she  

2:11has founded the Unumb Center For Neurodevelopment  which provides services to people with autism in  

2:17South Carolina. She and her husband Dan wrote the  first ever comprehensive textbook on legal issues  

2:22related to autism entitled Autism and the Law and  she has won numerous awards for her contributions  

2:27to autism advocacy. We could not be more thrilled  to have such a high impact speaker here with us  

2:33today. About 50% of people who receive a SYNGAP1  diagnosis will also receive a co-diagnosis of  

2:39Autism Spectrum Disorder. Lorri has spoken with  SynGAP Research Fund advocates in the past about  

2:44advocating for proper treatment of our loved ones  and is aware of the unique challenges we face as   a community. At the end of the presentation you  will have an opportunity to ask your questions  

2:54by writing them in the chat. A recording will be  made available on the SRF website. Again welcome  

3:00to our presentation today entitled “Let me hear  your voice affecting change through effective   advocacy”. So Lorri I’m going to hand it over  to you and thanks so much again for being here.  

3:10Perfect Sydney thank you so  much for that kind introduction   and can you just let me know that you do see my  slide and everything is good? I see your slides  

3:19and we hear you just fine. Perfect. Thank you so  much and thank you to the SynGAP Research Fund for  

3:25the invitation to speak to you today. I really  enjoyed talking with some of the leaders  

3:30from your organization a couple of months ago and  there indeed are so many similarities between the  

3:37struggles that you face in getting  effective services for your children   with the autism community. So I want to start  at the very beginning of my talk it’s going to  

3:47be a little bit duplicative of the information  that Sydney just shared with you but I kind of   want to share that I really come at this from five  different perspectives and I’ll share those with  

3:59you now. First of all professional perspective:  my work, my full-time career is in autism now  Professional Perspective

4:08I spent a decade with autism speaks and then  as Sydney said I now lead the council of autism  

4:14service providers and i’ll talk a little bit more  about those professional experiences as we go  

4:21but I share that the first of my five perspectives  is this is my career, my professional perspective.  Provider Perspective

4:28Secondly, although I’m not a provider  I do have a little bit of provider  

4:36perspective because my husband and I founded a  non-profit clinic originally called the Autism  

4:44Academy of South Carolina as Sydney shared it’s  now called the Unumb Center For Neurodevelopment.  

4:50The board very kindly voted to change the  name in our honor just a couple of years ago  

4:56and I share this even though I don’t work  at the Unumb center and I never have,  

5:03I do still feel responsible as the founder  of the organization and it has helped me  

5:08understand from a business perspective the  provider aspect of things I feel responsible  

5:16to make sure that our staff get paid every  two weeks and we’re almost at 50 staff now so  

5:23it has certainly shaped my advocacy to have  a little bit of insight into the business and  

5:29provider side of things. So that’s the second  perspective. The third is an academic one:  Academic Perspective

5:38I taught a law school course for about five years  called Autism and the Law at George Washington  

5:45University Law School where I used to be a  full-time professor before autism entered my life  

5:52and as Sydney also mentioned my husband and I  wrote a textbook to go along with that course  

5:58also called Autism and the Law and so approaching  all of these issues about access to care,  

6:06funding, lifelong care, from an  academic perspective has also  

6:11shaped my advocacy. Fourth I just wanted  to share that I spent a couple of years  Commissioner Perspective

6:19as a commissioner on the South Carolina Department  of Disabilities and Special Needs. South Carolina  

6:25is my home state and where I currently live and  this gave me again a whole new perspective. The  

6:34Department of Disabilities and Special Needs  is the state agency in South Carolina that  

6:40administers Medicaid waivers for people with  disabilities and so it certainly broadened  

6:46my perspective to understand a variety of  disabilities and a lifetime of needs and limited  

6:53resources. I stepped down off of that commission  just last year at the end of my term but I learned  

7:00an awful lot and again another perspective  that shapes my advocacy and then finally the  

7:05fifth and most important perspective of course  is that of parent and my son, my firstborn,  Parent Perspective

7:13was diagnosed with autism at 22 months of age.  At the time he was diagnosed I really didn’t even  

7:21know what autism was. I had seen Rain Man and that  was about it. What I learned just you know i’m  

7:30sure you all know this I learned from the doctors  that day that autism was not considered curable,  

7:37was considered treatable to some extent. All the  facts: four times more common in boys than girls,  

7:45medical condition brought on through  no fault of the family. Literally   learning from scratch just like any other parent  all of that on the day of my son’s diagnosis.  

7:56We were living in Washington DC at the time he was  diagnosed, when he was born and at the time of his  

8:02diagnosis and I look back on that and think how  lucky we were to have access to multiple very fine  

8:11medical institutions and he in fact was triple  diagnosed because I was on the waiting list  

8:17for so long trying to get an appointment with  a developmental pediatrician and by the time I  

8:24had waited six months for an appointment I  just went ahead and kept all three of them   even though he was diagnosed at the first one and  looking back I think that’s really lucky because  

8:35all three of these excellent institutions  recommended the same course of treatment for my  

8:41son Ryan. They all recommended that he be enrolled  in a very intensive regime of Applied Behavior  

8:50Analysis or ABA. Again, something I had never  heard of. I didn’t even really have a concept  

8:57what therapy was and I learned, I researched thank  goodness for Google. Although Google was barely  

9:05around at that time when my son was diagnosed but  you know I learned this is a one-on-one therapy,  

9:10it might be recommended up to 40 hours per  week which it was for my son because he was   very severely impaired. I learned about  the science behind it and then I brought  ABA Providers

9:24prospective therapists into our home to teach us  how it works and what it cost and what we learned  

9:30is that there are multiple tiers of providers in  a child’s ABA program. There’s a consultant at the  

9:38top who’s board certified and then perhaps  a mid-level supervisor or lead therapist  

9:44and then line therapists or behavior technicians  at the lower level who are the ones in your home  

9:51or in the clinic providing the implementing the  the therapy program typically in three hour shifts  

9:58with what they explained to me for for up to  40 hours and then i learned about the cost and  Health Insurance

10:06with those multiple tiers of the consultant and  the mid-level supervisor and the line therapist  

10:13at 40 hours per week which had been recommended  it was going to cost $70,000 per year  

10:20and i remember turning to my husband in the  living room and saying “well thank goodness   we have health insurance. What would you do if you  didn’t have health insurance?” Little did I know  

10:31at that time that health insurance would not cover  one penny of it and I did not understand why.Private Treatment

10:42being the i guess somewhat cantankerous lawyer  that i am I decide- we went ahead and started  

10:50treatment for our child paying privately and  I said well let’s push it let’s find out why  

10:56the insurance company isn’t covering this  treatment that my son’s doctor recommended.  

11:02And we would get different reasons why  it wasn’t covered sometimes they would   say well that treatment that you want us  to cover is experimental or ineffective  

11:12and i thought really? What what does experimental  mean to you? Because i knew that the united states  Experimental Treatment

11:20surgeon general had said 30 years of research  demonstrates the efficacy of applied behavioral  

11:27methods in reducing inappropriate behavior and in  increasing communication learning and appropriate  

11:32social behavior. That doesn’t sound experimental  to me if several years before my son’s diagnosis  

11:40the surgeon general had endorsed it and  says it’s supported by 30 years of research.   So that basis for denial just didn’t ring  true for me. Sometimes they would say well  

11:53we don’t make insurance pay for any treatment  that’s provided by a non-licensed provider.  

12:01Well that one rang a little more true. I mean  there does have to be some level of fidelity  

12:07and integrity in who’s being paid for services  but I thought wait a minute that’s not really  

12:15fair because it’s not that i’m choosing to use a  non-licensed provider when there are licensed ones  

12:22there weren’t any licenses for behavior analysts  at that time and so just because the state  

12:31had not seen fit yet to license that provider  type that didn’t seem like a good justification  

12:39to be able to to deny the care to me and yet that  was the case and particularly where in the case  

12:46of Applied Behavior Analysis the providers were  nationally board certified it’s not like it was  

12:53just any tom dick or harry off the street. Even  at that time there was the the national nonprofit  

13:00behavior analyst certification board that had  very stringent standards degree requirements  

13:05coursework requirements supervised experience  and a psychometrically valid exam that that  

13:11has a relatively low pass rate actually. So the  providers were qualified if not licensed and again  

13:20that didn’t seem like an appropriate basis to deny  coverage. And of course now we know that 31 states  Behavior Analysts

13:28at this point now have adopted licensure  for behavior analysts so that reason  

13:34wouldn’t uh hold water anymore these  days anyway in the majority of states.  Medical Care

13:40Sometimes they would say well those treatments  that you want us to cover those are really   educational in nature. That’s not medical care.  And you know that was a little more difficult to  

13:52deal with as an argument because it is true that  good schools would utilize the principles of  

14:00Applied Behavior Analysis in educating children  with autism but it wasn’t true that the schools  Schools

14:10i felt that the school should not be charged with  ameliorating all of the effects of my child’s  

14:18condition. The schools are charged with educating  my child and it’s not fair to dump on the schools  

14:26the additional responsibility for ameliorating  his symptoms to the maximum extent possible.  

14:32That’s why i buy health insurance because  insurance is responsible for that and for  

14:38goodness sakes my child was not diagnosed by the  school principal. He was diagnosed by a doctor. So  

14:46that also seemed like a bogus justification for  denying coverage to me so despite all of these  

14:56invalid in my opinion justifications for denying  his coverage his care I look back at that period  

15:03and I think you know we were among the lucky  ones because during all this period of trying  

15:11to figure out why there was no coverage for autism  and for applied behavior analysis in particular,  

15:18my son was getting treatment. He was getting  40 hours a week of treatment because my husband  

15:24and i are both lawyers we both had good jobs  we both worked full time and we were able to

15:32live on his salary and use my entire salary to pay  for his therapy and you know even for us with two  

15:42good jobs we had to make sacrifices we we sold  our house and moved to a less expensive house  

15:49so that we could continue Ryan in the level  of therapy that his doctors had recommended  

15:56but I thought about all the average families in  the United States who couldn’t possibly make those  

16:05kinds of sacrifices or afford the therapy if you  don’t have two professional working parents or  

16:11maybe you don’t have a house to sell you  live in an apartment or you know just the   majority of families I realize would not be as  fortunate as we were and would not be able to  

16:26afford this therapy for their child and that just  seemed wrong to me and frankly was really a knife  

16:32in my stomach I kept thinking about what must it  feel like to be a mom or a dad and know there’s  

16:41a treatment out there that undeniably would  help your child but you can’t get it for your  

16:47child because you’re not rich enough and I just  couldn’t sleep at night thinking how horrible  

16:53that must feel and it also just seems so unfair  to me because you know these are families who  

16:59are paying for health insurance right i mean most  of the families i was i was working with they’re  

17:06they’re paying premiums every month and it seemed  they weren’t getting the benefit of the bargain  Old School House Rock

17:11so motivated by my experience with Ryan and  inspired by the the old school house rock.  

17:20i don’t know if you all are old enough to remember  but there was a schoolhouse rock that came on  

17:25cartoon that came on Saturday morning like a  little commercial and one of them was about how a   bill becomes a law. I’m just a bill yeah i’m only  a bill and i’m sitting here on capitol hill and  

17:35so it talked about how does a bill get started?  Well a citizen has an idea and they take it to  

17:43their legislator and and that’s how it starts and  i remember watching that one time and thinking  

17:49hey, I have an idea. I have a really good  idea. I think health insurance ought to pay for  

17:57autism treatment including ABA as recommended by  a physician. so yeah and but I forgot to listen  Its not usually becoming a law

18:05to the line in the song that said but it’s not  usually becoming a law because my little idea  

18:12was not so simple to implement. But I sat down  at my kitchen table in 2005 and just sketched out  My little idea

18:22what I thought the law should be very simple  bill two paragraphs that basically just said  

18:28a health insurance plan and this is in South  Carolina again where we were living we had moved  

18:35back from Washington DC a health insurance  plan must pay for treatment as prescribed  

18:42by the doctor in accordance with the treatment  plan and that was basically it and and the  

18:48the coverage the insurers couldn’t impose  different deductibles or co-pays or whatever  

18:55than they impose on on physical illness  generally. So very simple idea very simple bill  

19:02I contacted a legislator and got him to i i  went and met with him educated him about my  

19:09family’s issues and what the autism community was  facing generally and he agreed to file the bill.  Very simple bill

19:16That began a very long journey that was at times a  kick battle and at times a roller coaster ride and  

19:24definitely more than I was expecting and the  very beginning january 12th of 2006 you can see  First committee hearing

19:31it right there on the picture was the very first  committee hearing on that bill. I literally had  

19:36never even been to a legislative committee  hearing by that time and i was in charge of  

19:42putting together the witnesses and the parents  and whatnot of course I had been to law school   so I had some some sense of how to do it but again  not really sure if we were doing the right thing  

19:54and and that really kicked off the journey  which involved an awful lot of opposition from  Insurance industry opposition

20:00the insurance industry. They had all kinds of  objections to this little simple bill that I  Medicaid waiver program

20:07thought was such a good idea and i’m not going  to go through all of the… it’s a long story to  

20:14go through the whole battle to get that passed  but I will tell you that during the first year  

20:202006 we did not succeed and instead well the  bill actually did pass but by the time it passed  

20:31all of my language had been taken out and had been  replaced with a different program creating a new  

20:39government program funded by medicaid called the  Pervasive developmental disorder medicaid program  

20:46and this passed into law. it set up a program in  South Carolina to fund ABA therapy for children  

20:54with autism between the ages of three and eleven.  funded it up to fifty thousand dollars per year  

21:00limited to three years of treatment. it was  funded by seven million dollars which meant  

21:07that all of the children with autism basically  put their names into a hat and the state of  

21:13South Carolina had a lottery. they drew a hundred  names out of the hat and those hundred children  

21:20started into ABA therapy. my child was number I  think it was like 326 when they drew the names.  

21:33This program was engineered by the insurance  industry as a way to defeat the bill and they’re  

21:43very savvy, very smart. They figured out that  they should come up with something and so they  

21:48came up with this program and really thought that  the insurance parents would go away and would be  

21:54happy with this. i felt very strongly that health  care shouldn’t be doled out in a lottery system  

22:03and so i said thank you very much  for this medicaid funded program  

22:08now let’s come back the next year and pass the  private insurance mandate so that the children  

22:14who don’t have private health insurance will be  able to tap into this PDD waiver program and the  

22:20children who do have private health insurance will  tap into their health insurance and that way that   seven million dollars will go a lot longer  and serve more children. So we started all  

22:29over again in 2007 and again i don’t want to share  the whole story because it would take forever but  End of legislative session

22:37at the end of the legislative session right  right near the end on may 25th 2007 the bill  

22:43passed through the south Carolina legislature.  now that’s not quite the end of the story because  Governor vetoes bill

22:50on the penultimate day of the session the  governor of South Carolina vetoed the bill.  

22:59The governor in South Carolina has the  option of signing a bill, vetoing a bill  

23:06or letting it become law without acting on it and  i really thought he might do that latter option. i  

23:13i suspected he was not in favor of the bill  but I thought he would let it become law   knowing that the autism community had worked  so hard for two years to get this passed  

23:23but no he vetoed it. Late at night,  the the night before the session ended,  

23:31that telephone that you see on the screen is  there because i stayed up that night calling   my autism friends from around the state  saying oh my gosh you’re not gonna believe  

23:40it everything we just worked for is down the tubes  the governor just vetoed it and i said please come  

23:50to the capitol tomorrow show up at the state house  i know it’s late at night i know you don’t have  

23:56a babysitter just bring your kids whatever.  Let’s just show up tomorrow morning and plead  

24:02is there anything they can do can they  override this veto would they override this   veto you know politics is it’s such a partisan  environment and we had a republican governor and  

24:13a republican legislature and I wasn’t sure that  the republican legislature even though we they had  

24:20come to understand our issues i wasn’t sure that  they would go so far as to override a veto by  

24:27a fellow republican governor. But they did. so on  the very last day of the session June 7 2007 the  Overrode veto

24:37South Carolina legislature unanimously overrode  the governor’s veto and Ryan’s Law became law. oh  

24:45choking me up just a little bit to think about  it because it was quite an emotional day. By  

24:50the time it passed it still didn’t resemble  very much the actual bill that I had written  

24:57initially there were all kinds of restrictions  in it so you had to be diagnosed by age eight.  

25:05coverage only extended through age 16 there was  a 50 000 per year cap on behavioral therapy.  

25:12all of which i was adamantly opposed to but  one of the things i learned during this process  

25:17is that you you have to negotiate. if you insist  on the perfect legislation you’re probably going   to get nothing. So that was june 7 2007 and by the  way this was the next day June 8th. i literally  Disney World

25:32threw my boys into the minivan and drove to  disney world because i was so tired of being  

25:40in the political arena and lobbying for this bill  and i felt like i had been ignoring my own kids  

25:47so we we took off and and got away from it all  for a couple days at disney world. That led to a  Autism Speaks

25:55complete career change for me. Everything that  i’ve described thus far i did as a volunteer  

26:02just as a mom. i did not work in autism yet at  that point but shortly after ryan’s law passed  

26:11in south carolina i got a call from Autism Speaks  which had been formed just a few years before and  

26:20they said you know we think that’s a really good  law that you passed down in South Carolina, we’d  

26:25like for you to come work for us full time and try  to replicate that law lead the effort to replicate  

26:32that law in all 50 states. And i actually had  to think about it for a few months because i  

26:38really was enjoying my job practicing law at the  time but i decided I would take them up on that  

26:45offer and so i went to work full-time for Autism  Speaks in 2008 and and led their state government  

26:53affairs department and what I did during that  time was in fact travel around the country  Model Legislation

27:01meeting with autism parents and providers and  other stakeholders, going to find legislators  

27:08that we thought we could educate about the issue  and would be sympathetic to our issue drafting  

27:15the bills for the state to consider and and every  state of course made changes to shape it and make  

27:23it their own but but we could provide a starting  point for them with model legislation tailored  

27:29to the state. So it was a very interesting,  rewarding, gratifying journey to to travel around  

27:37to all the states and and work on this effort to  ensure that all kids have access, all people…  Transition Music

27:48I forgot i had transition music in there. So you  probably have heard that that we were successful  

27:55in that journey and i’ll show you… I start  the journey actually in 2001 not only because  

28:03that’s the year my son was born 2001 but that  was actually the first year that any state  Autism Insurance

28:10mandated autism insurance coverage. Indiana was  actually the first not South Carolina and Indiana  

28:18was quite out front of every other state because  congressman Dan Burton’s grandchild was diagnosed  

28:27with autism. i think it was his grandchild and  so you know I think he went through the same  

28:33thing that we went through. He was shocked that  health insurance wouldn’t pay for the treatment   recommended by the doctor for autism and he had  a brother that was still in the state legislature  

28:43in Indiana. So they passed a similar bill and and  just required that health insurance cover autism.  

28:52it didn’t… i think it’s significant that the  effort in Indiana was was backed by a congressman  

28:59because it didn’t generate the same controversy  and debate for two years that was generated in  

29:06South Carolina and as a result it didn’t really  catch on. Other people around the country  

29:12didn’t know that that bill had passed, didn’t  know that there was coverage in Indiana   and in fact i have many friends  in Indiana now who tell me that  

29:22it actually the coverage really did not unfurl  properly as a result of that 2001 legislation.  

29:30It took years before there really was coverage  and families had to fight through the department  

29:38of insurance to get it properly implemented.  I imagine the Burton family probably got their  

29:46coverage but if there was not really widespread  coverage for autism through health insurance   for many years. So even though Indiana was  first nobody knew about it and thus other  

29:56states didn’t really pursue it. So this is what  the map looked like in 2001. Here’s 2002 2003  

30:072004 2005. one time i was showing this at a live  presentation and a mom in the back of the room  

30:14raised her hand and said excuse me your picture  is not changing. i said I know. that’s exactly  

30:21the problem the picture is not changing  because there was no progress whatsoever   on meaningful autism insurance reform for years.  this is 2006 and then in 2007 when south carolina  Ryans Law

30:35passed ryan’s law as i said it was heavily  debated and controversial and the media covered it  

30:41and so people around the country did hear  about it and became interested and said hey,   we want to do that in our state we want to do it  in our state so Texas passed a very similar law  

30:52shortly thereafter. texas’s law actually only  covered children between the ages of three and  

30:59five believe it or not so that was dipping their  toe in. texas went back and fixed that so it’s now  

31:07much more comprehensive but the original law  that that passed in texas was very limited  

31:12but so as of 2007 then three states had passed  laws requiring insurance coverage for autism.  

31:20whoops i went the wrong way. 2007 again. 2008  that’s when autism speaks got involved and  

31:29professionally supported this effort and so in  2008 five more states passed similar legislation  

31:38for a total of eight and then in 2009 seven  more states passed bills for a total of 15.  Autism Insurance Bills

31:472010 eight more states all in that year was  a very tiring year passed autism insurance  

31:54bills for a total of 23. in 2011 we got up  to 29 with six more states passing mandates  

32:04in 2012 we reached 32 states 2013 34 states.  2014 38 states. 2015 43. 2016 44. 2017 46.  

32:182018 48 and then finally in 2019  the 50th state addressed the issue.  

32:27Tennessee was number 50. my colleagues and i had  Autism Speaks we would always take bets through  

32:32the years of who was going to be number 50. but  they all got there. they finally all got there  

32:38now i will say that really the map should look  more 50 shades of green because some of the  

32:46state laws are much better than others there are  many gaps in coverage there are caps on coverage  

32:53that shouldn’t be there but there is at least  some coverage in every state now. we actually  Green State Grid

33:00that green state map we would keep on the wall  to keep track of our progress but internally  

33:06we had a green state grid that more granularly  depicted which states had coverage and in which  

33:16markets was the coverage applicable. this grid is  a couple years old but you know you had to check  

33:23was it applicable for large group plans? small  group plans? individual plans? state employees etc  Applied Behavior Analysis

33:31so and and for years I kept a chart like this  

33:38looking to see whether Applied Behavior Analysis  coverage was subject to a dollar cap in a state  

33:46and was it subject to an age cap in a state.  many of those caps have now been invalidated  

33:54some of them have been legislatively  removed others have been   invalidated under federal mental health parity law  but it’s certainly an indication that the coverage  

34:08was spotty from the beginning i every state did  a phenomenal job getting legislation through  

34:14but in almost every state it wasn’t perfect from  the get-go. Additionally even reaching the 50th  Health Insurance Coverage

34:25state with autism insurance mandates  didn’t ensure that everybody had coverage.  

34:34There are a variety of sources of health  insurance coverage in the united states.  

34:40Some people see this big blue piece of the pie  have health insurance coverage through medicaid  

34:48which is generally federally regulated and so  these state insurance mandates that we were  

34:56passing don’t apply to medicaid. Some people have  insurance through medicare generally that was not  

35:03relevant for us because we were mostly looking at  a young population and medicare is for elderly.  

35:09Some people are uninsured and certainly an autism  insurance mandate couldn’t do anything to reach  

35:16people who were uninsured. i think this number  it shows 11 percent when i first made this pie  

35:22chart and i think that’s gone down now  as a result of the affordable care act   but still there is a certain percentage of the  population that does not have health insurance.  

35:33the purple piece of the pie at the bottom  represents state employees and these numbers,  

35:39these percentages vary from state to state but in  every state there will be a similar pie chart and  

35:46state employees also aren’t subject (generally)  to an autism insurance mandate or any other kind  

35:55of state insurance mandate now most of the states  that passed the autism insurance mandates applied  

36:02the coverage mandate also to state employees but  it was a separate effort to make that happen.  

36:10the big piece of the pie here is  what i have labeled ERISA or ASO  

36:16which stands for administrative service  only and that is 25% of the population.  

36:24that’s pretty standard in a state  to see 25% of the overall population  

36:30insured through a plan a health insurance plan  that’s governed by a federal law called ERISA  

36:38rather than by state law and technically i said  it’s a health insurance plan, technically it’s  

36:44not an insurance plan because these types of  plans are operated by big corporations like  

36:52Walmart or Walgreens or bmw or cvs or you know  any pretty much any large corporation in America  

37:02pools their own money together and creates  their own little health plan for their employees  

37:08rather than farming out the risk to an insurance  company like Cigna or Aetna or blue cross. Now  

37:16you might not know if you have a health plan that  is technically a self-funded plan by one of these  

37:24large companies because those large companies  typically contract with an insurance company Cigna  

37:31or Aetna blue cross for administrative services  only. So if you’re an employee of one of those  

37:38companies you still have a blue cross card or a  united health care card and you may not be aware  

37:45that blue cross is only administering the plan  they’re not assuming the financial risk of the  

37:51plan. That’s all very technically detailed but  my reason for telling you all this the point is  

37:58people who have health care through a self-funded  plan that is merely administered by an insurance  

38:05company all those people do not get the benefit  of state insurance mandates. So that big chunk  

38:14of people also wasn’t helped by the state autism  mandates and then just to finish out the pie here  

38:23about two percent of the population in my state  was tricare military families and tricare of  

38:29course is a federal program so it’s not regulated  by a state insurance law. Same thing for the  

38:35federal civilian workers they have federal fehb  it’s called federal employees health benefit plan  

38:43and they’re not subject to state  law. So the remaining pieces of pie  

38:48are the ones who have what i call regular  insurance that the state mandate can reach  

38:55and that’s still many many people and of  course it’s very important to those people  

39:00that these laws passed but it left a lot of people  uncovered as well. so as as we had Autism Speaks  

39:11worked on the effort to ensure that everybody  who needed care had access to care passing the  

39:18health insurance mandates in all 50 states  was a heck of a job but it was only one  

39:24piece of the effort. we also worked to convince  the self-funded health plans to add coverage for  

39:34autism and ABA and then we had to work on medicaid  to also include coverage for ABA. so i’ll say  

39:43just a little bit about both of those efforts  here. every as i said essentially every  Selffunded Health Plans

39:51large corporation in America has a  self-funded, internally funded health plan  

39:58not subject to state insurance regulation and so  we could pass state laws all day long and none of  

40:06these companies would have to comply. So the way  to get these companies to have to cover autism and  

40:14ABA would be either to pass a federal mandate  or to go company by company and meet with the  

40:21hr department and try to convince them that they  should offer this coverage and we opted for the  

40:28latter i mean we did draft a federal bill and we  had some conversations with congress about it but  

40:34the fact of the matter is that the United States  congress at that time had only ever mandated  

40:40four benefits in the history of the united states  so not that we shy away from a challenge but the  

40:50chances were not good that we were going to drive  through an autism mandate in in short order.  

40:58We decided instead it’ll probably be faster to  just go company by company and and we put out  

41:05a call to families and said hey if you work for  Starbucks if you work for bank of america if you  

41:10work for Walmart and you need this coverage and  you don’t have it reach out to us we’ll partner  

41:16with you and go to your hr and plead for coverage  and it’s it’s not plea is not the right word.  

41:22We’ll make a business case for coverage it’s  all about dollars and cents and and you might  

41:29wonder why would any corporation voluntarily add  this coverage which is not inexpensive but they  

41:40do because they have to remain competitive  and if you work for Bank of America and your  

41:50child needs a treatment that’s costing you $70,000  a year and bank of America won’t offer that  

41:58but your state employee plan does offer it or  another fully funded plan does offered in your  

42:03state chances are you’re probably going to leave  bank of America and you’re going to find a job  

42:09where your health plan, your insurance does cover  it. These large self-funded companies they know  

42:15that they know they have to remain competitive in  their benefits package it’s part of compensation  

42:21and so while it was a very long  process and still not complete process  

42:28of trying to convince each company to add the  coverage in some ways it wasn’t as difficult  

42:35as you might think at the outset. i actually  every year for many years i would compile a list  New Companies

42:44and out on January one or or at the end of each  year i would say okay here are the new companies  

42:49that came on board this year and i’m sure i  probably didn’t know of all of them but some   of these companies i had met with individually  so so we would know who was coming on board.  Recap

43:02all right so we’ve talked about the efforts to go  state by state to pass autism insurance mandates.  

43:09we’ve talked about the efforts to go company  by company to get self-funded health plans to  

43:15add appropriate benefits. that still leaves  the medicaid population and for Medicaid we  EPSDT

43:25utilized a provision of medicaid law called EPSDT.  that stands for early and periodic screening  

43:35diagnosis and treatment and this is a provision  of federal medicaid law that is designed to assure  

43:44that children on medicaid between the ages  of 0 and 21 receive early detection and care  

43:55so that health problems are averted or diagnosed  and treated as early as possible. i remember the  

44:05first time i learned about the EPSDT program and  i was at a conference i believe in washington dc  

44:13and the deputy surgeon general was speaking about  EPSDT and he’s he said you know we’re carrying  

44:20out congress’s intent that for every kind of  health problem there should be early and periodic  

44:29screening for a health problem, diagnosis of the  problem and treatment of the problem. For whatever  

44:37ails these children who are on medicaid and i  went up to him at the end of the speech and i said  

44:46i just want to make sure i understand what you  just said. for any health problem there’s supposed  

44:52to be screening diagnosis and treatment paid for  by medicaid? and he said that’s correct as long as  

44:58the children are eligible for medicaid and I said  and that includes autism? and he said yeah i mean  

45:05i don’t think he had thought about that one way or  the other but autism is a health problem so yes.  

45:13and i said because i’m pretty sure that in every  state or virtually every state a child on medicaid  

45:21can get periodically screened for autism and can  get medicaid to pay for a diagnosis of autism  

45:30but we’re missing the “T”. We’re missing  the “T” medicaid is not paying for the most  

45:37commonly prescribed treatment for autism he didn’t  have an answer to that. i’m sure he didn’t know  

45:44anything about it i probably hadn’t ever dealt  with it before and so that plagued me for a while  

45:52that there was not for autism. now i want to  spend a minute to actually read a piece of  

45:58the law to you because as i think about  Syngap and how you can advocate to get  

46:05better coverage for the care that you need I think  this EPSDT program could be part of your strategy  

46:14and perhaps you’ve already pursued this so let me  know if that’s the case but the medicaid statute  

46:23requires certain types of medical assistance  that’s the term of art to be covered. one is  

46:33paragraph a nursing facility services. paragraph  b early and periodic screening diagnostic and  

46:42treatment services as defined in subsection r  for individuals who are eligible under the plan  

46:49and are under the age of 21. so that is the  EPSDT statutory provision and then if you look at  

46:58subsection r it says that EPSDT services  include such other necessary health care,  

47:10diagnostic services, treatment and other measures  described in subsection a to correct or ameliorate  

47:19defects and physical and mental illnesses and  conditions discovered by the screening services  

47:26whether or not such services are covered  under the state plan. So this is an incredibly  

47:34comprehensive program that congress passed with  the intent that for children who are on Medicaid  

47:46we want the government to pay to detect  their health care problems, get them properly  

47:53properly diagnosed and treat them and it  doesn’t list out certain health care conditions,  

47:59it just says health care conditions and so this  is just a sweeping statute that I believe you  

48:10could argue, and successfully argue that if if a  doctor is recommending ABA or whatever the doctor  

48:20is recommending for an individual with Syngap if  that if that person is or that child because EPSDT  

48:27only goes through 21 if that child is eligible for  medicaid then medicaid must pay for that treatment  

48:36and we can talk more at the end if you  have particular questions about that but   it’s it’s an incredibly important tool in the  advocacy toolbox. I’m debating if i was going to  

48:48tell you the history i i’ll take just a second to  tell you that the reason congress passed this law  

48:55was because i think it was during  the Vietnam war era draft too many  

49:03young people were getting out of military service  on the basis of a relatively minor health problem  

49:12and congress got upset and said that’s ridiculous  if we had known you had a hearing deficiency we  

49:18could have fixed that or if we had known you  had this impairment we could have fixed that  

49:25and so kind of as a backlash against all these  people getting out of military young people  

49:30getting out of military service congress added  this EPSDT program to the medicaid program and  

49:37said we’re fixing it from now on we want healthy  kids. so use it. use it so the autism community  

49:46had to do quite a bit of deliberate advocacy  to make use of EPSDT. in fact all or almost all  

49:59states were not providing coverage for ABA as part  of EPSDT and so we advocated directly with CMS  

50:11for a period of years and the end of  the story is that on july 7th 2014  

50:18CMS issued a memo, a seven-page memo, to all  state medicaid agencies basically clarifying  

50:28that medicaid coverage for children with autism  should include all medically necessary services  

50:37they stopped short of saying hey states you must  cover ABA because they don’t like to list out  

50:43particular treatments but that was the point of  this memo almost all states instantly got it and  

50:51implemented ABA coverage there are actually two  states still dragging their heels even though  

50:58this memo came out in 2014 and a couple of states  have required litigation but we’re almost there  

51:04in ensuring that all medicaid eligible  kids in all states have access to ABA  

51:12by the way in in case you’re not  familiar with medicaid eligibility  

51:18it does vary from state to state in all states  children can be eligible for medicaid on the basis  

51:27of income if they meet a certain poverty level  or their family meets a certain poverty level,  

51:33that is one pathway to medicaid eligibility but  in many states, the majority of states there’s  

51:40another pathway to medicaid eligibility on the  basis of disability and so you don’t have to be  

51:48poor, you can simply meet the medicaid definition  of disability and become eligible for medicaid. So  

51:56for example my son is on medicaid he he also  has private health insurance through my job  

52:02but he is on medicaid and he is eligible for  it because autism qualifies as a disability  

52:09for medicaid purposes. So i recommend that you use  medicaid EPSDT again as a tool in your advocacy  

52:20even if it only reaches poor children  because strategically there’s a reason to  

52:26do that but also know that in many states it  doesn’t reach only poor children, it reaches  

52:33those with with qualifying disabilities. Okay. One  thing i’m transitioning a bit here and one thing  Systems

52:42i want to say is that i do have a firm belief  that a variety of systems have a role to play in  

52:51ensuring adequate services are provided to  children with autism and other disabilities.  

52:57I have spent most of my career as you’ve  heard ensuring that insurance and medicaid are  

53:03at the table playing a role because they were  playing no role at all when my son was diagnosed  

53:09but it’s not that I think the schools don’t  also have a role to play they certainly do   and IDEA makes that clear and various other  state programs as well have a role to playStrategies

53:25there’s my transition queue. so i want to  turn now and for the remainder of my time  

53:31just talk about tips and strategy.   you know if you decide to pursue a legislative  route trying to mandate coverage for Syngap I  

53:41certainly think you could do that and and frankly  you could probably tag onto the autism insurance  

53:47mandates in in many states. so i just want to  talk a little bit about the strategy that we  

53:53developed through the autism insurance, through  the period of getting all those laws passed  

53:59because I do think this is hugely important and  a reason that so many advocacy efforts fail. So  Playing Against the Big Boys

54:08okay i forgot i had that much music first of  all it’s just really important to keep in mind  

54:15if you’re pushing an insurance mandate of any  sort you are playing against the big boys.  

54:23I knew that and yet i was still   overwhelmed by the amount of money that was spent  to oppose our bills in each state. On our side  

54:37occasionally we were able to fund a lobbyist  in most states not but occasionally we were  

54:44sometimes who were working well below their dollar  value but parents were doing most of the advocacy  

54:51and on the opposition side there would be teams of  lobbyists who spent every day at the state capitol  

55:00working against our bill. It is kind of stunning  to appreciate the extent to which you will be  

55:07outnumbered and overpowered and outspent by  the opposition if you’re advocating against  

55:13the health insurance industry. So we had  a strategy in South Carolina that that my  Favors Fishnets and Facts

55:18brother who has since passed away but he was  a political consultant he didn’t lay this out  

55:24in in the way that i’m going to tell you but he’s  the one who helped me understand what’s important.  

55:32The strategy is called favors fishnets and  facts and and when i first wrote this bill  

55:37and i wanted to get it passed I literally showed  up with binders full of data that i had compiled  

55:43to support the efficacy of applied behavior  analysis and show the scientific literature  

55:49and and my brother to whom with whom i shared  this just laughed and laughed and he said  

55:55data? What you think they want to see your data  they don’t want to see data? Here’s what you need   to do call up your own legislator and say senator  jones i live in your district and i want to ask  

56:08you a favor i have a child with autism. there’s  a bill pending that would really help my family  

56:15would you sign on to that bill and would  you support that to help my family?  

56:20And my brother said that’s all you need to do just  ask them if they know that there’s a constituent  

56:27in their district who cares about their bill  most likely they’re going to sign on to it. And  

56:33i was dumbfounded by that. I said to my brother  why would anybody sign onto the bill if they  

56:39haven’t read it if they don’t know if it’s a good  idea if they haven’t seen the science behind it?   He said trust me it’s just the way it works so  that was our strategy and within a few weeks we  

56:51had 81 legislators listed as co-sponsors signed on  to our bill just by finding a constituent in their  

57:00district to call and ask a favor. It was really  clever. The insurance industry took note once they  

57:09saw suddenly oh my goodness there’s a mandate  bill with 81 sponsors we better pay attention.  

57:16The second piece of the strategy is called  fishnets and this is not me in the photo this   is my friend Lisa Rollins who was also an autism  mom and she decided i’m going to do this with  

57:26you you you tell me when to show up i’m going  to meet you at the South Carolina state house   every day and we’re going to work this and Lisa  she had never been to the state capitol either  

57:38but she really got into it and she was having  fun and she loved getting to know the legislators   she would chase them into the men’s room  door just lobbying and educating them and  

57:50I tell you as the days went on Lisa’s skirts got  shorter and the blouse got lower cut and one day  

57:57she showed up and she had on this short  black skirt and fishnets and i thought oh   my gosh i’m going to have to tell Lisa that’s  just not appropriate and then i said you know  

58:08no i’m not going to do that i’m not going to  tell her that’s not appropriate lisa is not   a professional lobbyist. She’s a mom and she’s  entitled to come to the state house and talk to  

58:18her representatives wearing whatever she wants  to wear. It doesn’t matter because we’re not  

58:23trying to pretend to be anything other than what  we are well that was the best decision i ever made   because Lisa looked very good in her fishnets and  she got a lot of doors open with those long legs.  

58:35And then facts is at the end. So favors  fishnets facts. At the end of the process  

58:43there will be one or two people in the legislature  who do want to see your binder with all the facts  

58:51and the data and i was relieved frankly that there  there was the way the legislatures work is that  

58:59somebody educates themself enough to assure  their colleagues yes, this is good policy,  

59:04this is a good bill but it’s not everybody  the bulk of the people who vote on it  

59:11i shouldn’t say they’ve never read it  maybe they they have read it but they   certainly haven’t studied up. They trust each  other they find somebody who has studied up  

59:20and and they and they vote on the basis of that  recommendation so that was kind of our strategy  Tips for Legislative Success

59:26there. A few tips for legislative success that  we we learned as we went through the process  Get to Know Your State Legislators

59:33one of course is just get to know your state  legislators. If you don’t already know them just  

59:40call them up and and say hey i’d like I  live in your district those are the keywords  

59:46and i’d like to sit down with you and talk  with you about an issue. It’s really important   even before you have an ask to educate them on  the issue. Also get to know your state regulators  Get to Know Your State regulators

1:00:00because a lot of times it’s the regulators who  run the agencies who have more direct power over  

1:00:05you than the legislators themselves and I have  listed just a variety of agencies from California  

1:00:13that were relevant in our California efforts and  they have different names in every state of course

1:00:22how do you get to know your state officials  the legislators or the regulators? be on   the lookout for town meetings and go to their  own town meeting if they’ve set something up.  

1:00:32Definitely if it’s campaign season they’ll always  lend you an ear at a campaign event. There are  

1:00:39conferences where if you’re engaged in a national  strategy on a state-by-state basis like we were  

1:00:46it’s really worth your time to go to the national  conference of state legislators or the council  

1:00:52of state governments or the national governors  association. Presumably those will start to be  

1:00:57in person again soon and i started going to those  I got Autism Speaks to set up a booth i got the  

1:01:06behavior analyst to set up a booth because you  can hit a lot of the legislators all at one time  

1:01:12and if you’re not there educating them about  your cause why do you think they’re ever going  

1:01:18to know about it or learned about it you you’ve  got to take that on that’s your role as a citizen  

1:01:23in government that’s how it operates. We also  set up a bunch of Starbucks meetings when the  

1:01:30legislators were home not at the state capitol but  home in their district it was just really easy to  

1:01:36say you know i’d like to meet with you or i’ve got  a handful of families who want to meet with you  

1:01:41can you just stop by Starbucks on Tuesday morning  at 10 and that was really a low pressure way for  

1:01:48legislators to meet because it’s a public place  they could duck out whenever they needed to  

1:01:54and so we found that they were really willing to  just meet at Starbucks and learn about our issues.  

1:02:02This is the most important tip i think of all and  that is be friendly and polite. Not demanding. so  

1:02:12many people walk into a legislator’s office and  bang their fist on the desk and they they’re mad  

1:02:20because there’s no coverage for autism and why  should my child be discriminated against and  

1:02:25we had to sell our house and whoa you know 99%  chance the legislator knew nothing about that  

1:02:35unless they happen to have autism in their  family or they have Syngap in their family   chances are they barely know what it is, they  they’ve never heard of the treatment they’re  

1:02:45not aware that insurance doesn’t cover it. They  don’t know the struggles you’ve had as a family  

1:02:50you need to walk into every meeting assuming that  that legislator wants to help you. They truly want  

1:02:58to help you they just don’t know what your needs  are they don’t know your issues so your job again  

1:03:05as a citizen in this form of government is to meet  with them and educate them here’s what Syngap is.  

1:03:13Here’s how it affects my child here’s how it  affects our whole family here are the problems  

1:03:18that we’re still facing when we try to access care  for our child here’s a solution that I have in  

1:03:24mind that I’d like your help with. They respond  so much better to polite friendly approaches.

1:03:34if you do pursue legislation even  if it’s just amending an existing   law like the autism insurance law you want  to carefully choose a legislative champion.  

1:03:44You need to find one person or a couple of people  who are going to make it their job to wake up  

1:03:50and think about that bill every day because just  getting a bill filed means nothing. The bill will  

1:03:56just sit there you have to have an advocate who  is pushing your bill through the system and you  

1:04:03want to think carefully about whether you’re  in a republican-controlled legislature or a   democrat-controlled legislature. You typically  want to select somebody from the majority party.  

1:04:12Even if you feel like your issue is a democratic  issue say if you’re in a republican control  

1:04:18legislature find a republican sponsor you’re  going to be a lot more successful that way. Also  

1:04:23if you can find a legislative leader to carry  your bill they usually are savvy and and have  

1:04:30favors that they can call in  so that’s that’s always good.  

1:04:36When you’re recruiting spot legislators to sponsor  your bill you have to know their language. Here’s  

1:04:44what we learned: if you ask a legislator will you  sign on to the autism insurance bill if they say  

1:04:54yes they mean yes if they say no they mean no but  most of them don’t want to say no so they’ll say  

1:05:04maybe and if they say maybe that means no. If they  say let me think about it that means no if they  

1:05:13say i’d like to study it that means no if they  say i’m not sure about the timing of this bill  

1:05:19that means no. If they say i support kids with  autism that means no what you have to understand  

1:05:26as you’re counting votes and you’re counting how  many people said they will co-sponsor your bill  

1:05:32or vote for your bill if they have responded  with anything other than yes that means no  

1:05:39because if they are going to sponsor it or they  are going to commit to voting to it they really   want to say yes to you. You’re a constituent.  They desperately want to be able to say yes  

1:05:49so if they say anything else they’re not with  you so make sure you don’t count those as yeses  

1:05:56oh yeah i’d like to help everyone with autism i  learned also that means no make sure you pursue  

1:06:02one thing at a time legislatively so many times  i would go into a state that was ready to pursue  

1:06:09autism insurance reform and also there would be  autism advocates in the community who wanted to  

1:06:16pursue a license plate oh we’ve always wanted  to have an autism license plate in this state  

1:06:23and maybe they wanted to pursue a registry we’re  interested in having individuals with autism  

1:06:30on a voluntary registry both of which are great  ideas right but the way legislators think if if  

1:06:38in one year they do something for autism  autism is checked off they’re not going to do  

1:06:46everything you ask for and so if you ask for  an autism insurance mandate and a license plate  

1:06:54and the other one all at one time a registry  guess which one they’re going to do probably  

1:07:00the license plate they’re not going to  do the insurance mandate which is the   the hard one to pass so if you’re trying to get  insurance coverage that is your only ask that year

1:07:13educate and educate on a surface level i’m going  to quickly show you this video it’s still just  

1:07:19kind of stunning sometimes to think about some of  the people who are are our elected representatives  

1:07:27and their thoughts on insurance and and how  it works let’s see if i can bring this up

1:07:36the second one is take off the mandates for  coverage in the State of Nevada and all over  

1:07:44the united states but here you know what  i’m talking about you’re paying for things   that you don’t even need they just passed the  latest one is every everything that they want  

1:07:55to throw at us now is covered under autism  so that’s a mandate that you have to pay for  

1:08:02how about maternity leave i’m not going  to have any more babies but i sure get   to pay for it on my insurance those are the  kinds of things that we want to get rid of

1:08:15i probably shouldn’t make any comment  after i show this video but it’s  

1:08:20stunning to me that some  people don’t seem to understand   how insurance works and that is you spread  the risk amongst the entire population  

1:08:32you don’t just select oh i’m going to have  babies so i want maternity coverage in my policy  

1:08:39or i have a child with autism everybody pays for  everything that’s kind of the whole concept behind  

1:08:46insurance so you have to educate at a very surface  level and along those lines as well this was a  

1:08:53huge mistake i made when i started the legislative  advocacy legislators would ask me i knew they  

1:08:59would ask me well what is autism and this slide  was in my original powerpoint when they would ask  

1:09:06what is autism this is the slide i would show this  is a terrible slide for that question you can’t  

1:09:14process all of that it’s way too much information  it’s it’s this is from the dsm at the time  

1:09:21so after a year or two i i learned to to  simplify even more autism is a medical condition  

1:09:28it affects social skills language whatever and  then i simplified even more and made it colorful  

1:09:36because you know one minute legislators are  learning about autism and the next minute they’re  

1:09:42talking about trash collection and the next minute  they’re talking about bridge construction or   transportation issues they’re generalist and  they just can’t remember and can’t process  

1:09:54really deep detailed information so you have to  educate them at a very surface level let’s see

1:10:04where is my why there we go use positive  reinforcement those of you who are familiar  

1:10:10with applied behavior analysis know that that’s  one of the principles of human behavior that’s   very much a part of aba and you need to use it  with the legislators as well and and with the  

1:10:19families who are working with you write thank you  notes whenever you’ve had a positive conversation   with the legislator issue a press release to the  local newspaper they love that i mean first of  

1:10:32all a local newspaper will publish anything that  you write and give to them pretty much and if you  

1:10:38send it with a picture of here i am or here’s  my child with senator jones well senator jones  

1:10:44is going to love that and you just put a  little caption senator jones showing his  

1:10:49support for kids with autism at that point  you’ve basically trapped senator jones into  

1:10:56voting for you because you  you’ve thanked him in the paper   and and also be really positive with the other  families that that are working with you on that  

1:11:06it’s really important to be present if you’re  trying to pass legislation that’s hard when when  

1:11:13your family members we can’t be at the state  capitol all the time we have kids to care for  

1:11:19and so if you can hire a lobbyist that’s  where that helps but be present or be there  

1:11:25sounds kind of obvious but it’s amazing how  quickly some things happen and without notice  

1:11:31uh it’s not like they call you and say next  thursday we’re going to consider your bill  

1:11:37it may be that one morning the chairman says let’s  put that bill on our 11 o’clock calendar and you  

1:11:43don’t even have time to get there so you need  to be there all the time when the legislature is   in session somebody somebody has to be there keep  your eye on the clock the game is not really about  

1:11:55yes or no votes typically if somebody’s trying to  defeat your bill it’s about beating the clock and  

1:12:02so there are all kinds of internal deadlines  and if you don’t get a bill passed by x date  

1:12:07then it gets carried over to the next year  so you haven’t lost they just defeated you  

1:12:13with timing and i had to learn that the hard way  a couple of times so remember it’s about the clock  

1:12:22name your bill and you have to think about whether  to use the word mandate i mean if you are trying  

1:12:28to require insurers to cover something then you  are mandating coverage and technically that’s  

1:12:33called a mandate but a lot of republicans hate  that word and they pride themselves that they’ve   never voted for a mandate which i actually find  to be hard to believe because virtually all laws  

1:12:44are mandates where a seat belt is a mandate drive  65 or under is a mandate but they hate insurance  

1:12:54mandates many many uh conservatives do so you  have to think about using that language too much  

1:13:02in in South Carolina as you heard the bill was  called Ryan’s law after my son in Montana it  

1:13:08was called Brandon’s bill because i worked with  a mom named Laura whose son Brandon was uh was  

1:13:14there advocating in Arizona it’s called Stephen’s  law so if you can name your your bill and help  

1:13:20people understand it by putting a face with it  that’s always good orchestrate your testimony  

1:13:27i can see i’m we’ve only got 15 minutes late  left so i’m rushing through a few of these but  

1:13:33do not just if you get a hearing on a bill  you do not just put out a sign up list and say  

1:13:40who wants to testify because what will happen is  13 parents will stand up and say the same thing  

1:13:48instead you put out a list and you make a  list of here are the points i want to make  

1:13:53autism is a medical diagnosis who’s the best  person to make that point autism is treatable  

1:13:59who’s the best person to make that point autism  is often treated with a treatment called applied  

1:14:04behavior analysis here’s what ABA is who is the  best person to make that point so you have to   list out all of your bullets all your points  in the sequential order you want them made  

1:14:14and then decide who is the best person to make  each point it’s really important to come together  

1:14:22to the legislature let’s see we’ll  have a moment musical interlude moment  

1:14:33I don’t know how the Syngap community is the  autism community is very fractured and if you know  

1:14:43you’ve got people who want to focus on research  others who want to focus on treatment some people  

1:14:48who want to look at the genetic underpinnings  some people who want to focus on environmental   causes in particular vaccines some people who  want to focus on biomedical treatment options  

1:15:01let me turn that off if i can there we go others  want to focus on therapeutic treatment options  

1:15:08focusing on children only versus focusing on  adults some people who say i have autism and  

1:15:14i don’t need or want to be cured or treated  at all if you expose all of this internal  

1:15:22division and dissension to the legislature you can  forget it you need to go with one unified voice  

1:15:29and if you can’t get it together internally  before you approach the legislature you’re   not tight you’re not ready to pursue legislative  action in terms of getting treatment for your kids

1:15:42yes it’s very overwhelming for the  legislators to understand all of that okay  

1:15:50recruit top-notch speakers i kind of  touched on that think of who is the   best speaker on each point that you want  to make and and ask for their assistance  

1:16:00pack the room it’s always good to show that  there are a lot of people who support this bill  

1:16:07whenever we had a hearing my mother who was in her  80s would invite her entire Sunday school class  

1:16:16half of them didn’t know why they were there in  the hearing room and they didn’t care all they   knew was that my mother had told them they would  play bingo afterwards if they would sit through  

1:16:24an entire hearing and so you want to have all the  people wearing your pen or wearing your ribbon or  

1:16:30whatever that you can play the kid card you know  we decided it’s really not about sympathy it’s  

1:16:37not about generating sympathy for your cause it’s  about demonstrating why from a business or from a  

1:16:43financial perspective it makes sense to require  health insurance to cover your child’s treatment  

1:16:49and there is a financial case to be made that’s  what persuades them it’s not evoking sympathy so  

1:16:57we made a decision we’re not going to try to play  the kid card on the other hand we’re not going to  

1:17:02try to uh hide our kids either a lot of us needed  to bring our kids to the capitol or else we  

1:17:10because we had no babysitters so we didn’t play  that card but but we expose them in a natural way  

1:17:19i was afraid to involve the media at the outset  because having been a journalism undergrad i knew  

1:17:25that the media was supposed to present both sides  and i really didn’t want both sides presented  

1:17:30in the media but that was a mistake i learned  early on that was a mistake because uh the media  

1:17:37very favorably covered our side and they loved  this grassroots effort that was led by parents  

1:17:44not led by lobbyists so we got really favorable  coverage always maintain your credibility  

1:17:50a lot of times i was asked questions by  legislators that i did not know the answer to   for example simple questions like how many  children in South Carolina have autism i didn’t  

1:18:00have that data i knew the prevalent statistics  from the CDC i knew some school statistics but i  

1:18:07really didn’t have an accurate answer don’t make  it up i mean this is one thing you learn in law  

1:18:12school don’t ever make it up because then you’ve  lost your credibility it’s always fine to say  

1:18:17we’ve had a hard time producing that answer or can  i try to research that further and get back to you  

1:18:25lower your standards one of the things you learn  in law school they tell you there are two things   that you never want to witness being made sausage  and the law and it’s really true the process  

1:18:38of of watching a law be made is ugly and if you  insist on a perfect bill with all of the terms  

1:18:47that you wrote into it you’re probably going to  get nothing there are probably going to be some  

1:18:52things written into the bill that you vehemently  disagree with there were for me in virtually every   state but i had to learn to lower my standards  some coverage is better than no coverage even if  

1:19:04the coverage is not perfect it drives me crazy  to this day that the South Carolina law named  

1:19:10for my son says you have to be diagnosed  by age eight because some people don’t get   diagnosed by age eight particularly in a lower  socioeconomic status so i hate that provision  

1:19:20but had i stood my ground and said no if you won’t  take that out i’d rather you not pass it at all  

1:19:26there would have been many many children  who wouldn’t have had coverage to this day   negotiate this was another mistake i made this  picture is the lobbyist for blue cross blue shield  

1:19:39asking to meet with me at the end of our  first very successful hearing and at that  

1:19:44point i was kind of like i don’t think so  we just had 200 people in the committee room   and we have a lot of support that was a huge  mistake always sit down with the other side  

1:19:55and try to work out compromises and negotiate  just say no to task forces and working groups  

1:20:04very often at a committee hearing if you’ve  got a bill an autism insurance mandate or your  

1:20:10insurance mandate a legislator will say you  know this is a really interesting issue that i  

1:20:17haven’t known about before today and i  think it’s important we do something on this  

1:20:23i think we should put together a task force to  study this the first time one of them said that  

1:20:28to me i i was like yes we should i think so too  and then i learned what that actually means is  

1:20:35let’s kick it down the road for two to three  years it’ll take six months to assemble the   task force and then six months for them to start  meeting and then six months to write the report  

1:20:45no you want action you don’t want more study work  with a lawyer i’ve got just one particular example  

1:20:54Georgia actually passed an autism insurance  bill of sorts in 2001 very early on  

1:21:02this is the law if you read the very last sentence  it says the provisions of this subsection shall  

1:21:10not expand the type or scope of treatment beyond  that that is authorized for any other diagnosed  

1:21:18neurological disorder i’m pretty sure the  insurance industry got that last sentence  

1:21:24inserted and whoever was backing the bill  probably wasn’t working with a lawyer who  

1:21:30could look at that sentence and say wait a minute  this kind of negates everything if they’re not  

1:21:36using ABA currently for other neurological  disorders then this senate says that they don’t  

1:21:41have to use it cover it for autism so this bill  essentially got nothing for the autism community  

1:21:48they worked hard to get it passed and then they  didn’t get what they needed keep your chin up  

1:21:55i’m not going to tell all my war stories but  it the legislative route is very difficult and  

1:22:01if you don’t have to use that approach  in order to get coverage for your kids   then don’t because it’s it’s can be costly it’s  exhausting all of these bullets are our stories  

1:22:14you know one of the insurance lobbyists reported  me to the bar tried to get my bar license taken  

1:22:21away a lobbyist at one point with a room full  of autism mothers said you know what is autism  

1:22:29really anyway isn’t it something the mothers did  while they were pregnant like drinking or smoking  

1:22:34i mean it’s hard when you have to face that  kind of ignorance and try to fight for your  

1:22:42child’s health care it’s a hard it’s a hard battle  prepare for the questions you least want to answer  

1:22:52we actually already touched on most of these  so i’m not going to go through these slides

1:22:58let me see if there’s anything else we  talked about the educational argument and the  

1:23:03experimental earlier in the program yeah but you  know anticipate what the questions are going to be  

1:23:13and come up with with answers in advance because  you’re going to be asked the hard questions if  

1:23:19all of this policy and legal stuff is interesting  to you i invite you to join the autism community  

1:23:28at an event that we do every fall a gathering  called the autism law summit it’s something  

1:23:34that i started in charleston South Carolina  15 years ago and it still happens every fall  

1:23:41we move it around the country it was in salt  lake city in DC, Nashville, Mobile, Albuquerque,  

1:23:47San Diego san antonio jackson hole was our last  in-person one last year we did it on zoom and  

1:23:54called it the sort of summit but every year uh  this just group of autism parents and providers  

1:24:04and researchers and policy makers come together  to share ideas and strategize about how we can  

1:24:12make things better how can we use law and policy  and legislation and court to bring things better  

1:24:18a group of attorneys assemble as part of it  every year these are attorneys from all around  

1:24:24the country who are willing to litigate cases  i bet they’d be willing to litigate some Syngap  

1:24:29cases for you so the the autism law summit this  year is in columbia South Carolina my hometown  

1:24:37October 24th 21st through the 24th and you would  be very welcome there and would enjoy networking  

1:24:45with the movers and shakers who come to this um  i think i’m going to jump right to the question  

1:24:51these are kind of my my final slides right here  which are just more stories so i see that there  

1:25:00are two comments in the chat um i have advocated  for change on a small scale for my child  

1:25:08for example getting his IEP to be quite different  than expected how can i effectively advocate on a  

1:25:13different scale school district state  national level is one more efficient   what about when my personal views are not  exactly aligned with an advocacy organization  

1:25:23are direct letters to state senators  the best thing to do well i think i’ve   sort of hit on some of that and what i just  addressed it kind of depends on the issue  

1:25:35you know for me i considered kind of fighting  through the IEP process to get my son’s ABA  

1:25:43but i really for us i felt strongly that the  schools were trying and the insurance companies  

1:25:52were not trying to help at all they were trying  to stay away from it and um i thought sure i could  

1:25:59hire a lawyer to sue the school district that will  take years probably and cost a lot of money in  

1:26:04the same amount of time i can probably change the  law the insurance law at the state level and then  

1:26:11everybody or more people would be  able to benefit so it just depends  

1:26:16on exactly what is the policy change that  you you want to effect direct letters to  

1:26:23to state senators and representatives are a great  thing and direct meetings are even a better thing  

1:26:29as i said you want to you want to  put a face with a name so that they  

1:26:35no it you know if I tell you like legislators in  South Carolina if a constituent ever contacts them  

1:26:43about an autism issue a lot of the legislators  will reach out to me and say can you help me  

1:26:49help my constituent and i am so happy to  do that I love that they reach out to me  

1:26:54but they think of me as the autism mom and there  there are others as well you know and because  

1:27:00i’ve made my face known to them and and they know  that this is something I’m very passionate about  

1:27:05so make yourself known to your legislators so  that should they ever have a Syngap issue arise  

1:27:15or or other rare disease issues they’ll reach out  to you for help are there any other questions I  

1:27:24think a lot of this may be through facebook  live so I don’t know that I would see it but  

1:27:29yeah no worries so I actually have a couple of  questions for you myself but i just wanted to say  

1:27:37all of the information that you’ve given us today  has just been so incredibly comprehensive I love  

1:27:44how much of it comes I mean really all  of it comes from your personal story   and the intersection of your personal life with  obviously your professional career to make change  

1:27:55for so many of us and I definitely do want to ask  you some questions some are a little more general  

1:28:03and then some are a little more specific based  on conversations that I’ve had with people   prior to this webinar and knowing what they would  want to ask as well so my first question for you  

1:28:14is you touched a little bit on how we should  view legislators so for instance the basic  

1:28:21takeaway that I got was that we should view them  as wanting to help but perhaps not being informed  

1:28:28i want to ask after all of this time what would  you say is the general way that we should view  

1:28:34insurance companies at best what are they and  at worst what are they that is a loaded question  

1:28:43well you know my experience was that insurance  companies were not going to step up to the plate  

1:28:51voluntarily and do the right thing I wish that  that were not so but if you think about insurance  

1:28:59companies um they answer to their shareholders and  their shareholders interest is to maximize profits  

1:29:09essentially at base I mean I’m oversimplifying  but it is not consistent with maximizing profits  

1:29:18generally to add benefits the fewer coverages  they have to offer the higher the profits will  

1:29:27be and so I have not had a lot of luck reaching  out to insurance companies directly to try to  

1:29:36get them to add coverage that said once coverage  was mandated I’ve had I have some really great  

1:29:45relationships now with people who work within  the insurance companies but their lobbying arm  

1:29:53is a different matter and and we always fought  rather tooth and nail now all that said given  

1:30:03the similarities between Syngap and autism if  i were your community I would give it a shot  

1:30:13you know the prevalence is is low relatively low  and given the similarity I think it would be worth  

1:30:24reaching out to each insurance company to say you  know we’re very similar to autism we respond very  

1:30:30similarly to autism there’s now a lot of cost  data to show that adding the autism ABA coverage  

1:30:39did not break the bank it was remarkably low the  impact on premiums in in my state for example  

1:30:48years after the insurance mandate went into  effect we have data from blue cross showing that  

1:30:56the impact on premiums is about 40 cents per  member per month and so really do they want  

1:31:05to fight with you that much over that little  so I think it’s worth it it’s worth a shot  

1:31:12yeah that’s that’s actually striking to me because  i’ve never never had to put to me you know when  

1:31:18you add an expensive therapy that looks incredibly  expensive to a single family right when you’re  

1:31:23looking at a hundred thousand dollars a year but  then when it’s shared within a large insurance  

1:31:29network what that actually looks like is there  a great place that we could go that has numbers  

1:31:35like that to look at the cost benefit or or the  actual I guess negative cost of 40 cents that  

1:31:42the ABA could have on a plan so email me i  have a lot of that data I’m not sure that it’s  

1:31:53publicly available anywhere well that’s not true  I’m not sure it’s broken down in a way that you  

1:32:00would be able to access it but any state’s public  employee health plan would of course have to make  

1:32:06their data publicly available it might be a little  more difficult to to extract just that piece of  

1:32:13it but I have a lot of it and I’m of course  very happy to share it with you I will also  

1:32:18say that as to the autism benefit in particular  for a number of years the Missouri department of  

1:32:26insurance was required by their state legislature  to report on the cost of the autism coverage  

1:32:33and so there that is one state’s data that  is publicly available written into a nice  

1:32:39document i can also send you that latest report  but you could google that and find that as well  

1:32:45great that’d be really interesting to see so  just on the topic of Syngap and obviously i  

1:32:53had mentioned that the prevalence is about 50 of  our kids will also get a co-diagnosis of autism  

1:32:59you had mentioned and I’m so sorry I didn’t write  down the terminology that you used but I think it  

1:33:04was something along the lines of we could kind of  be tacked on with the autism legislature as Syngap  

1:33:14I just wanted you to give me like a brief overview  of what you meant by that and kind of the steps  

1:33:20that we would look at taking if we wanted Syngap  to be recognized as a disease that’s worthy of  

1:33:26having ABA provision made for our loved ones as  well so i think it would require legislation on  

1:33:37a state-by-state basis but rather than having to  write a whole bill from scratch what you would do  

1:33:47is pull up the existing autism insurance law and  just add the words “and Syngap” when it defines  

1:33:59for whom must this coverage be available you  would just add into there “and Syngap” and so  

1:34:08it’s a tiny change which can  make it easier to go through

1:34:16the down syndrome community got added to  the autism insurance mandate in Florida.  

1:34:25In Missouri two years ago another group of  disability advocates got the mandate expanded  

1:34:35to cover another group of disabilities. Now that  experience was actually highly problematic because  

1:34:44that group of advocates kind of didn’t know  to touch base with the autism community  

1:34:51to make sure that they weren’t agreeing  to anything that would be damaging to us  

1:34:57and so the insurance industry got a hold of their  bill I mean initially all they wanted to do was  

1:35:04add their group of disabilities to the coverage  bill. The insurance industry sat down with them  

1:35:10and said you know maybe we can work with you so  you won’t have to fight so hard to get this added.  

1:35:18We’ll agree to have your disorders added if you’ll  agree to a few language changes here and there

1:35:27language changes which were highly detrimental to  the autism community but they didn’t really know  

1:35:32that and so the autism community had to spring  into action. We didn’t even know about the bill  

1:35:42until it was already halfway through the entire  process and had already passed the house.   So it can be problematic. any time a piece  of legislation, a law is opened up it can  

1:35:52be problematic and so we we’re always having to  protect the 50 laws that have passed but I can  

1:35:59assure you that the autism community would be very  supportive of the Syngap community just trying to  

1:36:07get added in and we would help. Okay. What do you  think we should have in mind as far as strategy  

1:36:14goes because I’m sure you’re aware that Syngap  is you know just one of many neurodevelopmental  

1:36:20disorders that is, you know, linked with autism  and tied to a genetic diagnosis. Would it be  

1:36:25in our best interest to levy relationships with  those other organizations to get a bunch of  

1:36:31them included or would it be better to say well  let’s just do one at a time because then it you  

1:36:38know maybe it’s less complicated in some ways  and do it just for Syngap? What do you think?   Yeah that’s a hard question and it might vary  from state to state, you know, or it’s possible  

1:36:51some of the autism insurance mandates actually  say there must be coverage for autism and similar  

1:36:58related developmental disabilities or other  neurological disorders. I don’t remember the   exact language but some of them are very specific  to autism and others are slightly broader  

1:37:09and certainly I’d be in favor of making it as  broad as we can but sometimes when you try to  

1:37:16use language that’s a little too broad or generic  that just gives the insurance industry a reason to  

1:37:22fight back and say “well I don’t even know what  they mean by this. Which disorders have to be  

1:37:28covered? Can we count those? Do we know how many  people that is?” So it can be a little tougher  

1:37:34and you know I will say the autism community at  times got criticized for pursuing coverage for  

1:37:43only autism but I’ll tell you like you know I  wrote the bill that’s all I knew right? I mean  

1:37:52it’s not like we were trying to be exclusive or  that we had made a strategic decision that it  

1:37:58would be easier to pass just autism. I only was  advocating for what I knew and I knew that ABA  

1:38:05had been shown to be effective for autism. So you  know you just have to kind of balance going beyond  

1:38:15where you know the science is valid or whatever  and make that kind of on a state-by-state basis.  

1:38:23Okay, yeah. Now the next question that  I have for you is a little more it’s not  

1:38:28focused specifically on autism so you can  let me know if it’s you know maybe not your  

1:38:34expertise but I’d still love to get your opinion.  So you know as you know with Syngap we have  

1:38:41children who we want treated with ABA because of  their autism diagnoses and that’s expensive and on  

1:38:47the other hand a lot of our children are diagnosed  with epilepsy and other co-morbidities that  

1:38:53we also are seeking expensive treatments form  in the form of some kind of genetic treatment  

1:38:58and other neurodevelopmental  diseases have already had   such treatments come down the pipeline and  clinical trials we’re of course hopeful  

1:39:05that that will happen for our disease as well I’m  wondering what what knowledge you think you could  

1:39:12transfer to us as a group that will also be  seeking expensive treatments in the future  

1:39:18in the form of genetic treatments and making sure  that our loved ones have access to those as well.

1:39:25So in the case of other genetic disorders  for whom treatments have been discovered or  

1:39:35however you want to put it has there  been difficulty of getting coverage   for those? So I’m not super aware of what’s  gone in this realm as far as coverage.  

1:39:46I do know as one example muscular dystrophy has a  genetic treatment that is covered at least in some  

1:39:53cases that I’ve personal family stories that I’ve  read covered by their insurance. I’m not sure what  

1:39:58legal battles if any went into that. I wasn’t sure  if you might be able to speak to that. yeah I mean  

1:40:03I don’t really know. My initial reaction is you  know make sure that there’s not already coverage  

1:40:15you may not be getting so so with autism  because there is no identified genetic  

1:40:24underpinning that is one of the reasons the  insurance companies didn’t want to cover it or  

1:40:31that was one of the justifications they would give  legislators is we don’t even know what this is   anybody can say they have autism you  know there’s no medical test for it  

1:40:39and so in a way you have a leg up because  there’s an identifiable genetic cause

1:40:48and it’s not the case that everything   that is coverable is listed in a policy as  covered. So I mean I’d say the first thing to do  

1:41:01is file claims and see if it is covered and if  it’s not figure out what is the reason it’s not  

1:41:08because often the reasons are junk you know you’ll  get invalid reasons or you know I don’t know the  

1:41:20I think sometimes the insurance companies just  throw something to the wall and see what sticks.   They just issue a denial and hope that the family  won’t appeal and most of the times the families  

1:41:31don’t appeal. They just say “oh that got denied…  ugh” and they don’t think to fight back and they  

1:41:37don’t think to question why was it denied. So I  would definitely very exhaustively go through that  

1:41:43process first of seeing if they will cover it and  if they won’t what is the reason and is it valid?  

1:41:52Okay all right and then my final question to you  is if you have any advice for maybe some of our  

1:42:02global Syngap family that are  residing in countries where   you know ABA is still going to be  told to them that it’s experimental  

1:42:11and you know we don’t cover this like nothing in  our nation that covers this what would be some  

1:42:16first steps that they could dream of looking at  obviously the system is not going to be exactly  

1:42:22the same here as in the states but I’m sure there  are starting places for them yeah I appreciate   that question and I lose sleep now over that  question I’ve worked with families in a lot of  

1:42:33different countries I’ve traveled to many of the  countries to meet with their legislators or their   ministry of education or their ministry of health  to advocate for ABA coverage and you know you  

1:42:46it’s a long process you’ve got to find families  who are in it for the long haul and and it may  

1:42:53be resolved too late to be of maximum help  to your child but if you think of future   generations because in many of these countries  I remember going to the Czech Republic and we  

1:43:02had great meetings with the legislature with the  relevant ministries about the reasons to require  

1:43:12coverage for ABA but there were no behavior  analysts and there were no training programs for  

1:43:19behavior analysts and it’s like where do you even  start and so so those families started by getting  

1:43:27one of the universities to add a training program  with the appropriate course sequence to churn out  

1:43:32some BCBAs who then could open some clinics and  then we could get funding for it. So it’s a long,  

1:43:38multi-year process but it’s going to take the  families pushing to make it happen yeah and and  

1:43:49CASP will help with that the people who kind  of led the effort in the united states are  

1:43:57are more than happy to help around the  world and and we’re really invested in  

1:44:03just making sure every child has access no matter  where they’re located so yes even though the  

1:44:08system’s different I did some speaking in various  asian countries and in Northern Ireland and just  

1:44:16a handful of countries around the world in Brazil  and yeah you don’t get a legislator to file a bill  

1:44:24in the exact same way but some of the concepts are  definitely the same and just know that we’re we’re  

1:44:31willing to reach out and help to provide resources  to share our experiences to share the cost data  

1:44:38that sort of thing and even to travel where we  can to help convince your your policymakers okay  

1:44:47so for instance and a country that i know well  South Africa they’re in the situation where  

1:44:53autism providers are available if you have enough  money because they’re very much located in special  

1:45:00schools that cost you know tens of thousands of  dollars a year for your child to attend would that   be the kind of situation where and I’m assuming  this is the case for other countries as well  

1:45:10where they would see legislation as their  next step since providers are available yes  

1:45:16absolutely and in fact i’ve had conversations  with a few South African families and  

1:45:22was on the cusp of one of the families was was I  think ready to fly me over and then covet hit but  

1:45:32i think South Africa would would be it would be  a great country to work on because they do have  

1:45:40some infrastructure and a system of government  that I think would support this so yes yes is  

1:45:45the answer to your question okay I really  appreciate you answering it too because I   know one of our moms who’s very active and from  South America is here and this is a conversation  

1:45:54that we have a lot about making sure that  families have access to the care that they need   so great well we my husband and I both my  husband also works in this field he runs  

1:46:04a company called the Autism Legal Resource  Center and that’s essentially his law practice  

1:46:11but all he does is work with autism families and  providers to try to get adequate access to care  

1:46:17all over the country and and all over the  world and so he and I both went to Brazil   in 2019 right before the pandemic and  we’re still in touch with quite a few of  

1:46:28those families because in particular there their  court system the the litigation that’s ongoing is  

1:46:34very similar to some of the the ways we have  handled matters here and really our experiences  

1:46:42there were quite relevant to them and we’re  just happy to share you know what we’ve learned  

1:46:49awesome well Lorri I want to tell you just again  how incredibly grateful we are that you took time  

1:46:55out of a busy schedule and so many things that  you do to chat with us I really do feel inspired  

1:47:02by your personal testimony of caring for your son  and then you know, making a purposeful decision  

1:47:08that you were going to do things in a way that  would change things for future generations and  

1:47:13hopefully around the world as well so again  thank you so much for taking time to chat   with us and if you’re open to it for those  families who are maybe watching the recording  

1:47:24later on I’d love to submit any questions to them  if you’re open to that as well of course I’d be  

1:47:29happy to and I’m just very appreciative of the  invitation I have learned a lot by meeting you  

1:47:36all and you know I anything that that we and  the rest of the community can do to assist  

1:47:44the Syngap community we we feel your pain in a  lot of ways and and we want to see this inequity  

1:47:52righted and we’re happy to help great  thanks so much I really appreciate it  

1:47:57all right so I’ll say thank you to all of those  who have been watching us and following along if   you do have any questions that you’d like to have  submitted to Lorri then you’re welcome to send  

1:48:06them through to me sydney@syngapresearchfund.org  and again thanks Lorri thank you Sydney