August 2022 Update
It's time! Time to....
CALL the GOVERNOR!!
YOU can get your friends and family involved with your passion for autistic people and their families in this way: your friends and relatives can all help out the families who need equitable access to care and want a developmental approach to treatment! Allowing parents a choice and doctors a choice of treatment methods is good science under the legal definition of evidence-based practice!
Invite friends and family to join you in the efforts to urge the Governor of California to fix the laws to allow families to get coverage for all evidence-based treatment for autistics, including developmental approaches. It is said sometimes, "as goes California, so goes the nation!" This legislation, if the Governor will sign it, could set a precedent for other states.
You and all your friends and family in California can call at 916-445-2841 or email the Governor of California to say, "I support SB 562 for equity in autism treatment coverage." Below are more detailed instructions.
It's time! Time to....
CALL the GOVERNOR!!
YOU can get your friends and family involved with your passion for autistic people and their families in this way: your friends and relatives can all help out the families who need equitable access to care and want a developmental approach to treatment! Allowing parents a choice and doctors a choice of treatment methods is good science under the legal definition of evidence-based practice!
Invite friends and family to join you in the efforts to urge the Governor of California to fix the laws to allow families to get coverage for all evidence-based treatment for autistics, including developmental approaches. It is said sometimes, "as goes California, so goes the nation!" This legislation, if the Governor will sign it, could set a precedent for other states.
You and all your friends and family in California can call at 916-445-2841 or email the Governor of California to say, "I support SB 562 for equity in autism treatment coverage." Below are more detailed instructions.
May 2022 Update
PLEASE STOP what you are doing for a moment--
Go tell 50 of your email/Facebook Messenger friends to petition the Governor stand up for parent & doctor choice of treatment approaches and support for autistic people NOW! #SB562
Change.org petition link:
http://chng.it/5MkNc4nDNL
PLEASE STOP what you are doing for a moment--
Go tell 50 of your email/Facebook Messenger friends to petition the Governor stand up for parent & doctor choice of treatment approaches and support for autistic people NOW! #SB562
Change.org petition link:
http://chng.it/5MkNc4nDNL
February 2022 Update
Parents submitted the following Op-Ed Article to the LA Times about SB 562. The Times said no to publishing it.
We can go around this "No" - please blast this page link https://www.dirfloortimecoalition.com/your-voice-needed.html
on your Twitter and Facebook please!
@FloortimeCA
Parents submitted the following Op-Ed Article to the LA Times about SB 562. The Times said no to publishing it.
We can go around this "No" - please blast this page link https://www.dirfloortimecoalition.com/your-voice-needed.html
on your Twitter and Facebook please!
@FloortimeCA
Parents Want Governor Newsom to Sign Autism Bill!
Parents of autistic children know that COVID-19 isn’t the only health crisis in the news. The LA Times reported in December 2021 that new data show the rate of autism has increased from 1/54 to 1/44 children. Autism treatment and support for autistic people is an evolving healthcare and economic crisis, and we need our state to maximize the efficiency and effectiveness of care.
For our autistic children, many languish without help due to lengthy wait lists. The average wait for diagnosis in the US is 18 months. After that, there is a 12- to 18-month wait for intensive treatment. All of this lost time leads to worsening the child’s developmental delays while we wait for therapeutic services to begin. But often the approach to treatment is a poor match for our child and/or our family, so all that waiting and cost of care are wasted. Applied Behavior Analysis (ABA) is the most common treatment for autism. However, every autistic child is different, and many children do not respond to this approach.
There are other evidence-based approaches to autism treatment, and the research evidence for them has become stronger than for traditional ABA such as Developmental Relationship-Based Intervention (DRBI) and Naturalistic Developmental Behavioral Intervention (NDBI). Developmental approaches build on the child’s interests rather than dictating what the child should do. Scientific studies of both DRBI and NDBI demonstrate they have a meaningful effect on social communication which is one of the core problems in Autism.
We have watched our own children make dramatic, meaningful improvements in their emotions, behavior, and relationships through receiving DRBI treatment approaches. In California, health insurance is only required to cover the ABA approach, so we are generally forced to pay out of pocket for other intensive treatments. As a result, most families, particularly those with less means, don’t have a choice. This lack of choice disproportionately affects children of color, especially Black and Latino families.
California Law requires insurance to cover all evidence-based treatments. However, insurance companies are able to deny coverage for intensive treatment that does not use ABA-trained professionals. Our kids who do not respond to ABA do poorly at home and school because they do not receive the treatment approach they need. The largest outcome study of ABA looked at over 17,000 military dependents whose treatment was funded by the US Department of Defense and found that 76% made no progress over the course of a year, 9% got worse, and only 15% had a measurable benefit. There has to be a better way.
California families need flexible, affordable options for effective and therefore economical care that builds on the strengths of children. Parents of children with Autism covered by private health insurance are being denied the coverage our kids desperately need.
SB 562 would ensure that doctors can have a choice of covered treatment approaches to recommend. Once the Governor signs this bill, insurance companies will provide coverage for whichever evidence-based approach is recommended by our doctor for our child.
But there is opposition to SB 562 in Governor Gavin Newsom’s administration, despite the bill’s resounding bipartisan support by the Senate and Assembly and massive support from parents. Governor Newsom has just published a very important book for children that presents a compassionate understanding and support for children with dyslexia. Based on the governor’s own experiences of overcoming his own challenges of a learning disability, Ben and Emma’s Big Hitdemonstrates how the best, most effective approach to helping children with disabilities addresses the underlying causes of a child's difficulty. These children’s teacher, Ms. Kim, used a relationship-based supportive approach, capitalizing on each child’s unique passions, and it was beyond successful!
It is past time that all our California families discover the important message that author Governor Newsom is sharing, that each child is unique and deserves a treatment approach tailored to their needs. In this way, maybe someday another child with a disability will rise to the governor’s office and write about their own success story.
We as parents of special needs kids urge Governor Newsom to draw on his own experiences and stand up for California’s children by signing SB 562.
George and Denise Yllescas
Laura Smith
Parents of autistic children know that COVID-19 isn’t the only health crisis in the news. The LA Times reported in December 2021 that new data show the rate of autism has increased from 1/54 to 1/44 children. Autism treatment and support for autistic people is an evolving healthcare and economic crisis, and we need our state to maximize the efficiency and effectiveness of care.
For our autistic children, many languish without help due to lengthy wait lists. The average wait for diagnosis in the US is 18 months. After that, there is a 12- to 18-month wait for intensive treatment. All of this lost time leads to worsening the child’s developmental delays while we wait for therapeutic services to begin. But often the approach to treatment is a poor match for our child and/or our family, so all that waiting and cost of care are wasted. Applied Behavior Analysis (ABA) is the most common treatment for autism. However, every autistic child is different, and many children do not respond to this approach.
There are other evidence-based approaches to autism treatment, and the research evidence for them has become stronger than for traditional ABA such as Developmental Relationship-Based Intervention (DRBI) and Naturalistic Developmental Behavioral Intervention (NDBI). Developmental approaches build on the child’s interests rather than dictating what the child should do. Scientific studies of both DRBI and NDBI demonstrate they have a meaningful effect on social communication which is one of the core problems in Autism.
We have watched our own children make dramatic, meaningful improvements in their emotions, behavior, and relationships through receiving DRBI treatment approaches. In California, health insurance is only required to cover the ABA approach, so we are generally forced to pay out of pocket for other intensive treatments. As a result, most families, particularly those with less means, don’t have a choice. This lack of choice disproportionately affects children of color, especially Black and Latino families.
California Law requires insurance to cover all evidence-based treatments. However, insurance companies are able to deny coverage for intensive treatment that does not use ABA-trained professionals. Our kids who do not respond to ABA do poorly at home and school because they do not receive the treatment approach they need. The largest outcome study of ABA looked at over 17,000 military dependents whose treatment was funded by the US Department of Defense and found that 76% made no progress over the course of a year, 9% got worse, and only 15% had a measurable benefit. There has to be a better way.
California families need flexible, affordable options for effective and therefore economical care that builds on the strengths of children. Parents of children with Autism covered by private health insurance are being denied the coverage our kids desperately need.
SB 562 would ensure that doctors can have a choice of covered treatment approaches to recommend. Once the Governor signs this bill, insurance companies will provide coverage for whichever evidence-based approach is recommended by our doctor for our child.
But there is opposition to SB 562 in Governor Gavin Newsom’s administration, despite the bill’s resounding bipartisan support by the Senate and Assembly and massive support from parents. Governor Newsom has just published a very important book for children that presents a compassionate understanding and support for children with dyslexia. Based on the governor’s own experiences of overcoming his own challenges of a learning disability, Ben and Emma’s Big Hitdemonstrates how the best, most effective approach to helping children with disabilities addresses the underlying causes of a child's difficulty. These children’s teacher, Ms. Kim, used a relationship-based supportive approach, capitalizing on each child’s unique passions, and it was beyond successful!
It is past time that all our California families discover the important message that author Governor Newsom is sharing, that each child is unique and deserves a treatment approach tailored to their needs. In this way, maybe someday another child with a disability will rise to the governor’s office and write about their own success story.
We as parents of special needs kids urge Governor Newsom to draw on his own experiences and stand up for California’s children by signing SB 562.
George and Denise Yllescas
Laura Smith
January 2022 Update
Right now! PLEASE get your friends, family, staff, colleagues to urge the Governor of California to sign SB 562 for families to have equitable access to the most effective autism treatment approach for their child by tweeting @GavinNewsom #SB562 #equity #fairness #autism
Also SIGN THE Change.org PETITION!
Urge the Governor to sign our bill into legislation this time around with -
SIGN and then share the petition with all your friends:
http://chng.it/5MkNc4nDNL
Late breaking news - late June 2021 update:
11-0 vote in Assembly Health Committee!
STILL we have zero no-votes on SB 562 for autism treatment funding and access !
11-0 vote in Assembly Health Committee!
STILL we have zero no-votes on SB 562 for autism treatment funding and access !
June 2021 UPDATE:
40-0 vote on Senate Floor!
UNANIMOUS votes at every step so far for our bill SB 562!
https://leginfo.legislature.ca.gov/faces/billVotesClient.xhtml?bill_id=202120220SB562
40-0 vote on Senate Floor!
UNANIMOUS votes at every step so far for our bill SB 562!
https://leginfo.legislature.ca.gov/faces/billVotesClient.xhtml?bill_id=202120220SB562
April 2021 Update:
Look at our bill go!
In the news:
https://www.pasadenanow.com/main/portantinos-bill-to-improve-healthcare-access-for-autism-spectrum-disorder-patients-approved-by-senate-committee/
Look at our bill go!
In the news:
https://www.pasadenanow.com/main/portantinos-bill-to-improve-healthcare-access-for-autism-spectrum-disorder-patients-approved-by-senate-committee/
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March 2021
We have sponsored a NEW bill!! We need your voice of support!
a) As an individual, you may sign here: https://hipaa.jotform.com/210541205090036
b) As a professional, you may also put this organizational letter template on your letterhead and email to Jim Lantry callegadvo@gmail.com
c) Please request friendly organizations to also complete the organizational support letter template (professional guild, grad program, business guild, training program, etc.)
California SB 562 (bill text is here) will work for equitable access to intensive treatment funding for patients with autism. Insurance must cover whichever treatment approach is recommended for a patient by their doctor, not just one approach!
Clinical research evidence shows strong support for the meaningful results of developmental, relationship-based approaches to treatment. Developmental approaches respect and work with the individual differences of the child or adolescent's passions and neuropsychological profile. Developmental approaches use attuned relationships to help an individual move up the social-emotional developmental ladder to arrive at joy, creativity, empathy, purposefulness, emotional understanding, self-awareness, and warm connection.
This bill will assure California HMO's and PPO's approve funding for whichever approach the doctor recommends and the family chooses, whether it be developmental or traditional behavioral. This bill will close the loophole in California law so that all families are able to get DIR/Floortime and other evidence-based approaches covered. Please help us get this passed in committees and on Senate and Assembly floors by following steps a, b, and c above!!!!
We have sponsored a NEW bill!! We need your voice of support!
a) As an individual, you may sign here: https://hipaa.jotform.com/210541205090036
b) As a professional, you may also put this organizational letter template on your letterhead and email to Jim Lantry callegadvo@gmail.com
c) Please request friendly organizations to also complete the organizational support letter template (professional guild, grad program, business guild, training program, etc.)
California SB 562 (bill text is here) will work for equitable access to intensive treatment funding for patients with autism. Insurance must cover whichever treatment approach is recommended for a patient by their doctor, not just one approach!
Clinical research evidence shows strong support for the meaningful results of developmental, relationship-based approaches to treatment. Developmental approaches respect and work with the individual differences of the child or adolescent's passions and neuropsychological profile. Developmental approaches use attuned relationships to help an individual move up the social-emotional developmental ladder to arrive at joy, creativity, empathy, purposefulness, emotional understanding, self-awareness, and warm connection.
This bill will assure California HMO's and PPO's approve funding for whichever approach the doctor recommends and the family chooses, whether it be developmental or traditional behavioral. This bill will close the loophole in California law so that all families are able to get DIR/Floortime and other evidence-based approaches covered. Please help us get this passed in committees and on Senate and Assembly floors by following steps a, b, and c above!!!!
October, 2019
Veto
Despite unanimous approval in the California Senate and Assembly and hundreds of letters and over 1000 petition signatures from all of you and your organizations, our autism treatment insurance bill to ensure funding for ALL evidence-based treatment approaches including DIR/Floortime, Luca's Law SB 163 was vetoed by Governor Gavin Newsom at the last possible second. Our legislative advocate, Jim Lantry, is making progress in working with the Governor's staff and Senator Portantino to devise a new strategy for 2020 to ensure families can access the right treatment for their child and get funding for whichever approach to treatment their doctor recommends. We will be joining forces with ICDL through the new ICDL Advisory Council on Advocacy, Awareness, and Outreach to have a larger advocacy impact in California and other states and provinces in North America.
Veto
Despite unanimous approval in the California Senate and Assembly and hundreds of letters and over 1000 petition signatures from all of you and your organizations, our autism treatment insurance bill to ensure funding for ALL evidence-based treatment approaches including DIR/Floortime, Luca's Law SB 163 was vetoed by Governor Gavin Newsom at the last possible second. Our legislative advocate, Jim Lantry, is making progress in working with the Governor's staff and Senator Portantino to devise a new strategy for 2020 to ensure families can access the right treatment for their child and get funding for whichever approach to treatment their doctor recommends. We will be joining forces with ICDL through the new ICDL Advisory Council on Advocacy, Awareness, and Outreach to have a larger advocacy impact in California and other states and provinces in North America.
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July 11, 2019
Great progress on our new 2019 autism insurance funding bill, Luca's Law! Our new 2019 autism insurance funding bill, SB 163, has been making progress and we wanted you all to be the first to know! All your individual and organizational letters of support to Senator Portantino really helped! NOW we need your new letters to the Governor to sign the bill!! Click on Sample Letter Above - email your organization or individual letter to Jim Lantry callegadvo@gmail.com. Republican Senator Jeff Stone momentously reversed his position to vote for our bill in honor of his granddaughter with autism. Senator Stone testified how this bill would fix a big problem, as his own son has had to pay out of pocket for many of Luca's effective therapies. He was moved to tears to hear Luca address him for the first time in six years on the phone the night before: "Hi, Poppa!" Our bill's author, Senator Portantino, changed the bill name to Luca's Law! Parent and educational therapist, Caitlin Welsh, testified at the Senate Health Committee about her experience of doing everything she could to try to get insurance funding for an effective (developmental, relationship-based) approach to their son's autism .... see video. The Chair and the members were persuaded by her story and voted in favor of our new bill. One committee member reached out about needing similar information on how to get the best treatment for his own family member. Now, the Senate AND Assembly Health Committees and Human Services Committees, Senate Appropriations Committee, and Senate and Assembly Floors have all voted in favor of SB 163! Now it sits on Governor's desk for him to sign or veto, and CalABA has been soliciting letters with mistaken information asking him to veto this important bill.... so we need your support letters to Governor Gavin Newsom! |
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November 2, 2018
As we approach next week’s election, many have asked us about the candidate’s stance on Autism and parent choice. As a non-profit, we cannot endorse a candidate, but we can relay a candidate’s views on a subject. To that end we reached out to the candidates. Unfortunately, we have not received a response specific to Autism and parent choice. But, in the case of Lt. Governor Gavin Newsom, we can report on his position on Mental Health which mirrors in many ways our hopes for Parent Choice.
These views are found on his campaign website at (https://medium.com/@GavinNewsom/getting-serious-about-mental-health-8c09ad95a5ae) and I encourage you to read them.
But in short, Lt. Gov. Newsom believes that California is falling short on enforcing Mental Health Parity Laws. We are failing to treat mental health to the degree that we treat physical health and has pledged to correct this.
Among his many proposals are to:
ü Address the limitations in insurance coverage for mental health conditions
ü More funding for prevention and early intervention
ü Expansion of treatments and systems to bring best practices from around the world to Californians
ü Eliminate overlapping lines of authority in state government that hamper the ability to address problems impacting mental health services.
While this does not specifically address Autism, and Parent Choice, these positions give us hope that a Newsom Administration will work with the Autism community to solve many of the problems that the Brown Administration ignored.
As we approach next week’s election, many have asked us about the candidate’s stance on Autism and parent choice. As a non-profit, we cannot endorse a candidate, but we can relay a candidate’s views on a subject. To that end we reached out to the candidates. Unfortunately, we have not received a response specific to Autism and parent choice. But, in the case of Lt. Governor Gavin Newsom, we can report on his position on Mental Health which mirrors in many ways our hopes for Parent Choice.
These views are found on his campaign website at (https://medium.com/@GavinNewsom/getting-serious-about-mental-health-8c09ad95a5ae) and I encourage you to read them.
But in short, Lt. Gov. Newsom believes that California is falling short on enforcing Mental Health Parity Laws. We are failing to treat mental health to the degree that we treat physical health and has pledged to correct this.
Among his many proposals are to:
ü Address the limitations in insurance coverage for mental health conditions
ü More funding for prevention and early intervention
ü Expansion of treatments and systems to bring best practices from around the world to Californians
ü Eliminate overlapping lines of authority in state government that hamper the ability to address problems impacting mental health services.
While this does not specifically address Autism, and Parent Choice, these positions give us hope that a Newsom Administration will work with the Autism community to solve many of the problems that the Brown Administration ignored.
October 5, 2018
SB 399 Went Almost All the Way....
THANK you for all your calls, letters, and signatures over the past 24 months!! Our bill passed the The House and Assembly by large margins! We had over 1300 signatures on our petition to the Governor on Change.org. This is a huge achievement for parent choice.
Unfortunately, Governor Brown vetoed the bill, citing a reason that the requirements for providers had already been changed the year prior. (This objection does not reflect the actual nature or purpose of our bill and likely masks the last-minute heavy lobbying from self-protective professional guilds who fight for only one methodological approach to be covered.) We are strategizing now to take our fight all the way to completion with a new governor next year!
Unfortunately, Governor Brown vetoed the bill, citing a reason that the requirements for providers had already been changed the year prior. (This objection does not reflect the actual nature or purpose of our bill and likely masks the last-minute heavy lobbying from self-protective professional guilds who fight for only one methodological approach to be covered.) We are strategizing now to take our fight all the way to completion with a new governor next year!
JANUARY 29, 2018 our bill SB 399 PASSED THE SENATE!!
This bill allows coverage for all evidence-based, doctor-prescribed approaches to autism treatment and we have been working tirelessly to get it passed... Next, onward to the Assembly Health Committee in June and, if it passes, on to the Assembly floor!
CLICK HERE to SEE VIDEO
of the FIGHT IN ACTION!
We are David fighting Goliath (the insurance companies and lobbyists for ABA-only) and achieving this significant step is huge. Your action and support has made it possible and we need more of it... after watching the inspiring video above of the DIR/Floortime Coalition parent testimony at the Senate Health Committee, if you are inspired, please consider testifying at the next Committee hearing! Thanks to you, we have hundreds of letters from individuals.
Please ask your professional and educational organizations to place the sample letter below on institutional letterhead, sign, and email to Jim Lantry: callegadvo@gmail.com and he will deliver it to the legislators.
This bill allows coverage for all evidence-based, doctor-prescribed approaches to autism treatment and we have been working tirelessly to get it passed... Next, onward to the Assembly Health Committee in June and, if it passes, on to the Assembly floor!
CLICK HERE to SEE VIDEO
of the FIGHT IN ACTION!
We are David fighting Goliath (the insurance companies and lobbyists for ABA-only) and achieving this significant step is huge. Your action and support has made it possible and we need more of it... after watching the inspiring video above of the DIR/Floortime Coalition parent testimony at the Senate Health Committee, if you are inspired, please consider testifying at the next Committee hearing! Thanks to you, we have hundreds of letters from individuals.
Please ask your professional and educational organizations to place the sample letter below on institutional letterhead, sign, and email to Jim Lantry: callegadvo@gmail.com and he will deliver it to the legislators.
9/16 - DIR/Floortime Coalition's Bill AB 796 Signed into Law
Thanks to your letters over the past two years, AB 796 unanimously passed three Assembly committees and also passed the Assembly floor with no no-votes! Next, Floortime parents spoke at Committee hearings in Sacramento to stress the urgency of passing this law. The law did pass and the Governor signed it into law. It removes the autism insurance mandate sunset date (end date) of 2017, ensuring that insurance coverage for intensive treatment for autism with no age or dollar limits will continue on in California!
Unfortunately, at the last moment, the Senate Appropriations Committee chair removed all the key language about allowing all forms of evidence-based treatments to be covered. There are more battles to be fought and we will with your help continue!
Thanks to your letters over the past two years, AB 796 unanimously passed three Assembly committees and also passed the Assembly floor with no no-votes! Next, Floortime parents spoke at Committee hearings in Sacramento to stress the urgency of passing this law. The law did pass and the Governor signed it into law. It removes the autism insurance mandate sunset date (end date) of 2017, ensuring that insurance coverage for intensive treatment for autism with no age or dollar limits will continue on in California!
Unfortunately, at the last moment, the Senate Appropriations Committee chair removed all the key language about allowing all forms of evidence-based treatments to be covered. There are more battles to be fought and we will with your help continue!
Coalition Challenge Grant!!
Thanks to a generous donor, the Coalition received $5,000 from Cherry Crisp Foundation for reaching the goal of 50 new monthly donors! Thanks to each of you!! Cherry Crisp offered us one more challenge grant, so here we go starting down the path to 50 more....
RESOURCES
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GREAT Summary article of the research, "Evidence Base for the DIR/Floortime Approach", penned by our Coalition past president, Diane Cullinane, M.D. !!
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- UPDATES (Please Bear with us! Links to articles and news updates will be active shortly. Thank you.)
- Giving to Advance Floortime!
- PRINT 2014 CONFERENCE HANDOUTS HERE: http://www.pcdateam.org/dirfloortime/
- Fantastic Floortime Conference Lafayette October 10th!
- Filmmakers Screening Under the Stars: “Autistic-Like: Graham’s Story”
- 2013 DIR/Floortime Coalition of California Conference Videos Available Online!!
- Young Adult Panel Presentation 2013 DIR/Floortime Conference
- “Floortime Basics” by Dr. Diane Cullinane, Presenter at 2013 DIR/Floortime Conference
- “Regulation… Disregulation… Regulation… The On-Going Process to Support Appropriate Behaviors” by Cherisse Sherin, M.A., Presenter at 2013 DIR/Floortime Conference
- “DIR Approach to Feeding Issues” by Julie Miller, MOT, OTR/L, SWC, Presenter at 2013 DIR/Floortime Conference
- “DAISY’S STORY: A STORY OUT OF THE BOX” by Michal Piran, MS, OTR/L, Case Study Presenter at 2013 DIR/FLoortime Conference
- “PEELING BACK THE LAYERS OF THE ‘I’ FROM A NEUROPSYCHOLOGICAL PERSPECTIVE” – Dr. Jonine Biesman, 2013 DIR/Floortime Conference
- Research at York University Supports Developmental Treatment Approaches
- How to Advocate for Developmental Treatment for your child
- ADVOCACY UPDATE October 2012
