Divergent News

Archived | FEAT-FMC Newsletter Message | Circa January 25, 2010

FEAT-FMC Newsletter Message

FEAT-FMC Newsletter via
Mon, Jan 25, 2010, 3:16 PM
to me


— Autism — Autism — Autism — Autism — Autism —

1970 one-in-10,000 * 2000 one-in-166 * 2010 one-in-110
These are the numbers of children born who will contract Autism Spectrum Disorders (ASD)

Does this look like an increase to you?

You would be wrong.
This is not just an increase it is an epidemic and is growing exponentially

one-in-100 = 1% this is not just a statistic it is our children’s future

Because Autism has no known cure, Autism care and treatment will have a devastating effect on the Children with autism, Parents of Children with autism, and government backed programs for children with autism.

It doesn’t end there. Children with autism will grow up to be Adults with autism. Fact 18% of the autism population is under the age of 18. The California Department of Developmental Services (DDS) reports that of their $4.5 billion budget only $240 million is spent on children autism services. It doesn’t take a mathematician to see what is going to happen when the 18% (children) becomes the 82% (adults). It is estimated that the costs affiliated with services for people with autism will exceed more than $3 million per person. No amount of Federal or State tax base could keep up with the size of this expenditure.

These statistics are frightening. There is an untapped source that can help our precious children with autism navigate the gauntlet of out of reach services and expenses.

It is time to convert some of those huge profits and bonuses of the INSURANCE INDUSTRY into support services that the Children with autism badly need to affect positive outcomes for persons afflicted with autism. The cost of one 8 place corporate jet, could provide services for several autistic persons for life. Excluding the Executives of Corporations what would you vote to do with the monies spent on corporate aircraft fleets.

The following is being sent to Senator Darrell Steinberg Senate Pro Temp. of the California State Legislature. It is backed by over 40 Autism organizations throughout the State of California. Many of you belong to these organizations and understand first person what is going on with the Insurance Industry relating to coverage of services for autism. The Family unit cannot compete with the Insurance Industry to cover the services for autism, our Legislators can.

The attached Position Letter is only the opening move. Society and the families of children with autism will have to contact their respective Representatives to ask them to support what the Alliance of California Autism Organizations (ACAO) feels is the responsibility of the Insurance Industry. There are 15 States mandating insurance coverage for autism and the associated costs amounting to less than a 1% cost in premium increase. Thats right I said increase in premiums. The autism community is not asking for a free program.

This may be the longest and most important News Letter FEAT has ever written. Be advised that this has not been set into a bill as of yet. If and when it is FEAT will advise as to the next course of action. In the meantime your homework assignment will be to research who your Senator and Assembly member is.

To break the influence and power of the Insurance Industry the Autism Community will have to be very well organized and dedicated. This publication reaches 6,500 subscriber throughout California, all the States, and even foreign countries. If everyone passes this effort on to one person the gene pool increases to 13,000 and so on. Help us make this year the year of mandated Autism Health Coverage in California. California could be # 16 on the list of State Mandated Autism Health Coverage. California could become once again the leader in disability coverage for its children and adults. And most important California could get out of the Health Care Business and return to the business of Governing its budget woes. Governor Arnold please step aside so Californians can get on with caring for its Children with autism.

And here is the attached letter

Alliance of California Autism Organizations • 180 Valleywood Way,

Roseville, CA 95678 • 650-759-5737


President Pro Tempore, 6

th Senate District


Greg Fletcher

ACAO Representative

with any questions.
ASA–Autism Society of America

ASA-CA / Autism Society of California

ASA-Coachella Valley Chapter

ASA–Greater Long Beach/San Gabriel

Valley Chapter

ASA–Inland Empire Chapter

ASA–Los Angeles Chapter

ASA–San Diego County Chapter

ASA–Santa Barbara Chapter

ASA–San Francisco Bay Area Chapter

ASA–Ventura County Chapter

ASD Insurance Help

Autism Action Network

Autism Awareness Assoc–UC Davis

Autism Education Network

Autism Speaks–Bay Area

Autism Speaks–Los Angeles

Autism Speaks–Orange County

Autism Speaks–San Diego

Autism Speaks–Sacramento

Burlingame Mothers for Special Kids

California Autism Foundation

California Parents Association of


California Disability Community Action


FEAT– Los Angeles


FEAT–Fresno-Madera Counties

Friends of Children with Special Needs

Friends of The Bay School

Goh Foundation

K.E.N. Project

Kaiser Spectrum Kids

LIA Foundation

NAA–National Autism Association

Parents Helping Parents

Sacramento Asperger Syndrome Info

& Support

Sacramento BioMed

Schafer Autism Report

Santa Clarita Autism Asperger Network

Solano FEAT

TACA–Talk About Curing Autism

Unlocking Autism

Alliance of California Autism Organizations • 180 Valleywood Way, Roseville, CA 95678 • 650-759-5737

Position Paper: Why We Should Introduce an Autism Insurance Mandate Clarification Bill in California

The Bottom Line:

Health Plans are acting in bad faith

Every time they lose an argument they make up another one

They won’t stop until we stop them

A strong mandate clarifying AB 88 is the only way to close the loopholes

Families can’t wait any longer

The state can’t afford to wait any longer

The legislature can and should do this now

What are we talking about?

A strong mandate in the form of a clarification to AB88, California’s existing mental health parity law, that would close the loopholes

and allow the original intent of the mandate to be met. (AB 88 = Health & Safety Code 1374.72 and Insurance Code 10144.5)

This is not a new mandate – it is a clarification of an existing mandate

AB 88


already mandates medically necessary treatment for autism, which was recently confirmed by a California Superior Court1 – it is just not enforced.

See Appendix 2 for proposed mandate clarification bill comparison relative to AB 88
Can we pass this in the current budget climate?

The state can’t afford not to pass this clarification of AB 88. It will save our state millions of dollars every year starting immediately.

which should be the payer of last resort

The state currently spends about $250 million dollars annually on behavioral services through the regional center system,

Instead, they bear the full burden because health plans shift their responsibility to the state

responsibility of health plans

School districts spend additional hundreds of millions of dollars on autism treatment – some of which may also be the

The potential state budget relief of this bill is not merely a one-time reduction in expenditures

California will save year after year after year

million per affected individual)

The savings will increase year after year after year (long term savings of proper treatment for ASD is more than $3

The savings start immediately

There is NO short term cost

expenses from the private to the public sector

With the looming budget cuts to schools and regional centers (RC), it is critical that we stop the health plans from shifting
All other efforts to fix this problem have failed, and families can’t wait

After three years of working on the incremental approach to change:

those are individuals with the resources to fight

Less than 100 Californians have been able to secure the standard of care treatment (ABA) through health insurance, and

More than 100,000 Californians have an autism spectrum disorder

Governor vetoed SB1563 due to redundancy with mental health parity law and DMHC Autism Workgroup

DMHC Autism workgroup cancelled due to pressure from health plans

Mental Health Parity Law as currently written is not working for families dealing with autism


Efforts to work with DMHC for 3 years on enforcement have failed – DMHC has indicated preference for legislative

Litigation and early legal decisions against DMHC ineffective in changing DMHC behavior to date

Health plans are devoting full resources to avoid responsibility and delay, delay, delay – arguing to courts DMHC has jurisdiction,

arguing to DMHC courts has jurisdiction – which will extend litigation indefinitely.

Position Paper: Autism Insurance Mandate Clarification, Page 2 of 6

Litigation against health plans (Kaiser, Blue Cross) ineffective to date
Alliance of California Autism Organizations • 180 Valleywood Way, Roseville, CA 95678 • 650-759-5737

What’s the urgency?

Autism is now 1 in 110 (per CDC2) and 1 in 51 boys

In the past two decades California has had a two-fold increase in ASD rates

changes in diagnostic practices

Latest research from the MIND Institute confirms the increase is real and cannot be attributed to population growth or3

to the bone, there is no more to take from them

The budget crisis: California is going bankrupt, the entire regional center system is at risk of failing, school budgets are cut

DMHC is not acting as a patient advocate but rather has folded to the demands of health plans

cases to IMR (illegally allowed health plans to change denial reasons)

Despite 100% Independent Medical Review (IMR) overturns for ABA since 2008, DMHC no longer sending ABA

DMHC ignoring statutory 30 day review deadline – sits on case for 6 months to a year

is illegally allowing health plans to violate AB 88

DMHC refuses to change policies despite Judge Chalfant’s finding that DMHC made underground regulations and

DMHC allows medical necessity denials due to diagnosis of autism alone

licensed provider denial

DMHC requiring licensed providers for ABA despite no CA licensing requirement – allowing health plans to use

DMHC feels AB 88 is unclear and has asked for legislative clarification

Every year of delayed treatment is missed opportunity for a child that can NEVER be gotten back

Every year of delayed treatment costs 10 fold over the life time

California is falling behind – more than 15 states have strong autism mandates
Why health plans?

They are already legally required to be doing this and they are not

They are acting in bad faith and will never do it voluntarily (see Appendix 1)

centers and school districts) for decades

They have been pocketing the premiums and shifting their costs from the private sector to the state of California (regional
There is a consensus on the medically necessary standard of care for autism

Medical necessity of standard autism treatments is well researched and established. There is consensus on the standard of care in the

medical community.

Nearly unanimous independent medical review (IMR) decisions. (Jan 2008-March 2009) March 2009)

100% overturn of denials for Applied Behavior Analysis (ABA) (18/18)

85% overturn of denials for Speech Therapy (ST) (22/26)

86% overturn of denials for Occupational Therapy (OT) (18/21)


American Academy of Pediatrics states standard of care for autism is clear and includes ABA, ST, OT, PT, among other4

Surgeon General agrees standard of care for autism includes ABA, ST, OT, PT,

ABA, and a further 22 Emerging treatments

National Standard Project concludes there are now 11 Established Treatments for Autism spectrum disorders, including5

Health plans are the only ones promulgating the myth of lack of consensus to further their financial interests
Lots of people and organizations will support the bill

Autism Parent organizations

Guaranteed support from at least 40 autism parent organizations, unanimous support anticipated

This is the top legislative priority of autism groups and families in the state of California

Regional Centers

Sent a letter to DMHC asking them to force insurance companies to pay for ST, OT, PT and ABA (copy available)

Healthcare providers (ST, OT, ABA, physicians, psychologists, etc.).

Anticipated unanimous support (hundreds/thousands of providers)

School Board Members and Superintendents

Early polling (from this fall) suggests broad support

Teachers unions and PTAs

General taxpayers – who do not want their taxpayer dollars padding the pocket of insurance companies

Autism insurance mandates in other states have passed with bipartisan, even unanimous support from the legislature
The autism community is not looking for a handout

We pay our insurance premiums and receive no benefit

We are energized to fight for what we deserve

We are looking for the legislature to partner with us

Position Paper: Autism Insurance Mandate Clarification, Page 3 of 6

We are only asking that discrimination against people with autism spectrum disorders be stopped
Alliance of California Autism Organizations • 180 Valleywood Way, Roseville, CA 95678 • 650-759-5737

It’s is a good business decision to cover medically necessary treatment for autism spectrum disorders

Self-Insured companies who have analyzed the cost benefit of providing autism insurance coverage have concluded the benefits (e.g.,

increased employee productivity, retention and morale) far outweigh the costs.

California Employers with comprehensive autism coverage are increasing and include:


Home Depot


Cisco Systems (added 2007)

Oracle (added 2008)

Yahoo (Added 2009)
How a Gubernatorial veto can be avoided

It’s his last term

Bob Wright can be influential with Governor

Darrell can be influential with Governor

Autism Speaks can help Maria Shriver understand the issue

bear –

Informal assurances that Autism Speaks Public Relations resources and grass roots advocacy resources will be brought and e-mail lists

Issue passes most states with bipartisan – often unanimous support from the legislature

Families/CALWORKS/IHSS or letting hundreds of thousands of prisoners back out on the street

Governor has no choice in this economic climate – it might be the alternative to eliminating Healthy
Why we shouldn’t wait for federal reform

Obama’s bill even if passed won’t become effective until 2013-2018 – we can’t afford to wait, families can’t afford to wait

healthcare faced by families with autism

Obama’s bill currently includes behavioral health services, but is not strong enough to address the issues of accessing
Why this won’t bankrupt health plans, small business, or the general worker

Premiums will not be meaningfully impacted

legislature’s independent cost study showed a premium impact of less that $1 per member per month

Every independent economic analysis has shown the premium impact will be minimal – (The Pennsylvania

Only the health plans want to convince everyone that it’s too costly

When core autism deficits are properly treated, utilization of other healthcare services decreases

This is not a tax increase, it’s a tax reduction.

California taxpayers are already paying this bill through school districts and regional centers

If anything, this bill could reduce taxes
We are not shifting the entire cost to health plans

RC pay some today

Schools pay some today

Health plans pay nothing today – we’re asking them to pay their fair share.
It is worth doing even if the Governor vetoes it – (which we believe we can avoid)

You’ll be hero of autism community

You will be the hero of California taxpayers

You can use the State’s savings money to save another important taxpayer priority (schools, prisons)

It will make the bill easier to pass the next time

It will build grass roots

It will build support in the legislature

Prepared for Senator Darrel Steinberg, California Senate President Pro Tempore, at the request of Lou Vismara, January 25, 2010

Prepared by Kristin Jacobson

Alliance of California Autism Organizations – Steering Committee Member

Autism Deserves Equal Coverage – Co-Founder

Autism Speaks – Statewide Advocacy Chair

It will build awareness of autism


Position Paper: Autism Insurance Mandate Clarification, Page 4 of 6

Alliance of California Autism Organizations • 180 Valleywood Way, Roseville, CA 95678 • 650-759-5737

Appendix 1

The ever changing tide of health plans arguments

When health plans were winning IMRs they wanted all disputes to go to IMR and be decided individually.

Now that health plans are losing IMRs, health plans are putting intense pressure on the DMHC not to send disputes to IMR and calling

it a coverage issue (which violates AB 88).

And yet they still argue to the California courts that they do not have jurisdiction to rule on the ARCE case because these disputes are

individual and should be handled through IMR.

Health plan argument/tactic The truth

The problem

ABA is experimental They lost – it is proven effective

ABA is not medically necessary They lost – IMRs cite strong medical

research and call ABA the standard of care

ABA is educational They lost – IMRs find ABA is medically


ABA is custodial They lost – IMRs find ABA is medically

necessary and improves outcomes

Refusal to implement IMR – Regional

Center is providing

They lost – IMRs are binding

Delay Implementing IMRs – looking for


They lost – health plans have 5 days to

implement IMR decisions

Delaying IMRs – requesting

reevaluations after appeals finalized and

IMRs are filed

They lost – health plans only have 30 days

to respond to appeals

ABA is not a healthcare service They will lose this too – autism is a medical

condition and ABA is the most effective

evidence-based treatment

DMHC politicians have taken over and

are letting them get away with this illegal


ABA is not a covered benefit They will lose – AB 88 requires coverage of

medically necessary treatment. ABA is

medically necessary and therefore cannot be

excluded from coverage

DMHC politicians have taken over and

are letting them get away with this illegal


ABA requires a license They will lose – Knox keen Act requires no

license for ABA

DMHC politicians have taken over and

are letting them get away with this illegal


Bottom line:

Health Plans are acting in bad faith

Every time they lose an argument they make up another one

They won’t stop until we stop them

A strong mandate clarifying AB 88 is the only way to close the loopholes

Families can’t wait any longer

The state can’t afford to wait any longer

The legislature can and should do this now

Position Paper: Autism Insurance Mandate Clarification, Page 5 of 6

Alliance of California Autism Organizations • 180 Valleywood Way, Roseville, CA 95678 • 650-759-5737

Appendix 2

Comparison of Proposed Insurance Bill and AB 88

Important Similarities

Proposed Insurance Bill AB 88


necessary treatment of autism

Requires coverage of diagnosis and medically

necessary treatment of autism

Requires coverage of diagnosis and medically

Applies to a person of any age o Applies to a person of any age

Has no monetary caps o Has no monetary caps

less favorable than physical illness

Requires coverage under terms and conditions not

conditions as physical illness

Requires coverage under the same terms and

and disability insurer except:

Applies to every healthcare service plan contract

disability insurer except:

Applies to every healthcare service plan contract and
plan contract

Excludes specialized health care service

Excludes specialized health care service plan
Important Differences

Proposed Insurance Bill AB 88


necessary treatment from coverage

Prohibits exclusion of diagnosis and medically

coverage but not sufficient

Does not explicitly address, it is implied by requiring

amend, deliver, or renew coverage because of autism

Disallows termination of coverage and refusal to

Does not address

e.g., not medically necessary, custodial, not a

covered benefit, etc.

Specifically prohibits several current denial reasons

Does not address

established as the standard of care for the treatment

of autism (e.g., ABA, ST, OT, PT)

Requires specific treatments that are already

prescription coverage if offered by plan

Does not specify any specific treatments except

with the evolving standard of care

Includes provisions to ensure the law stays current

Does not address


Explicitly disallows denials because treatment is

Does not address

Defines PDD or autism as a neurobiological disorder o Defines PDD or autism as a mental health condition


Disallows mental health carve-outs to administer


Allows mental health carve-outs to administer

disallows visit limits, DOI does not

Explicitly disallows visit limits o Visit limits not explicitly addressed, DMHC

much be equal to other illnesses (applies to this

section only)

Defines medically necessary for autism, method

Not defined

prescribed, ordered, or delivered by a licensed

psychologist or licensed physician

Limits medically necessary treatment to that

licensing is addressed)

Not addressed in Statute 1372.74 (health plans claim

Benefits include services provided in the home o Not addressed

Requires DMHC and DOI to enforce o No requirement

Regional Centers and School Districts and vice versa

States that this law doesn’t impact obligations of

Does not address

available to enrollees cannot be denied because of an

autism diagnosis

Ensures medical care that would otherwise be

Does not address

Position Paper: Autism Insurance Mandate Clarification, Page 6 of 6

Not addressed o Exempts some Medi-Cal beneficiaries
Alliance of California Autism Organizations • 180 Valleywood Way, Roseville, CA 95678 • 650-759-5737

Appendix 3

Excerpts from Consumer Watchdog Decision

Case of Consumer Watchdog

Presiding Judge James C. Chalfant, Case number BS121397

“In any event, the purpose of the MHPA is to require plans to provide services for mental health, including ABA for autism, on an

equal footing with services for physical conditions.”

“It is true that the court should defer to an agency’s interpretation of its own regulations. Yet, the Department cannot adopt a

regulation which exceeds its statutory authorization, and a court does not defer to an agency interpretation when deciding whether a

regulation lies within that scope of authority . . . There is no licensing requirement for provision of ABA services.”

“In sum the MHPA requires that a plan offer mental health services on the same conditions as services for physical conditions. The

Knox Keene Act does not require that health care providers be licensed or certified unless the law so requires. ABA services are

provided by professionals who are not licensed or certified in California but are certified by a private organization. Therefore plans

must offer such services unless they have licensed providers who will provide the same services.”

“The Department’s interpretation of section 1300.74.72(b) is consistent with the MHPA’s purpose of parity in the provisions of

services for mental health problems. By interpreting section 1300.74.72(b) to permit a plan to deny referral of ABA treatment to nonlicensed

providers, the Department is permitting plans to avoid provision of ABA at all. This interpretation is not consistent with the

MHPA purpose of preventing private plans from inadequately covering mental health illness and shifting the costs of mental health

treatment to the state.”

“Petitioners have submitted a viable claim that section 1300.74.72 (b) must be interpreted to permit provision of ABA through a

professional certified by a private agency and the department has a ministerial duty to adjudicate enrollee grievances to permit it.”

“Since there are clearly different possible interpretations of section 1300.74.72, the Department’s interpretation is not the only legally

tenable one. Indeed, it is not the correct one. The Petition states a viable cause of action that the Memo constitutes an underground

regulation. The demurrer is overruled in its entirety.”

et al vs California Department of Managed Health Care et al, Los Angeles County Superior Court,

of Managed Health Care

Judge James C. Chalfant of Los Angeles County Superior Court in the case of Consumer Watchdog et al vs California Departmentet al, Case number BS121397

Chair, Senate Select Committee on Autism and Related Disorders

January 25, 2010

Dear Senator Steinberg,

We are writing to you to express our most urgent request that you introduce and carry an

autism insurance mandate clarification bill this legislative session. Given the fiscal crisis

faced by California and the autism epidemic that grows larger with every passing day, our

great state can wait no longer to require health plans and insurers to pay their fare share of

autism treatment and stop shifting costs to the public sector. The state currently spends

hundreds of millions of dollars every year on medically necessary treatment for individuals

with autism which legally and morally is already the responsibility of the health insurance

industry. And thousands of children and adults with autism go without treatment, which is

unconscionable since there are now many evidence-based treatments for autism.

Our organization, Alliance of California Autism Organizations (ACAO),

is comprised of more than 40 autism organizations throughout the state, and we are certain

that we speak for the autism community about this issue. Insurance reform is our

organization’s top legislative priority for 2010. We are seeking meaningful health insurance

reform that ends discrimination against individuals with autism and provides the health

coverage that our families pay for and do not receive.

We applaud your excellent record of leadership in the autism arena – including Chairing the

Blue Ribbon Commission on Autism, Forming and Chairing the Senate Select Committee on

Autism and the carrying numerous bills over the years that have helped our community. You

are the ideal person to take the leadership on this essential bill. There is no way you could do

more to help California families struggling with autism.

There are few legislative opportunities that can make such a meaningful impact on the lives

of some of the most needy Californians and save the state hundreds of millions of dollars in

the process. We believe this issue has the unique opportunity to unite a wide and disparate

group of constituents, including the autism community, regional centers, school districts,

teachers, health care providers, and taxpayers. Our community is energized about this

opportunity and we are committed to delivering the grass roots support needed to pass this

important piece of legislation

Please review the position paper we have prepared as to the innumerable reasons you should

introduce this legislation now. Please contact Kristin Jacobson at 650-759-5737 or

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The information and resources on the Families for Effective Autism Treatment-Fresno/Madera County (FEAT-FMC) Website are for educational and informational purposes only. Information provided through The Site should not be used as a substitute for care by a qualified Developmental Pediatrician, Pediatric Neurologist, Behavioral Psychologist, Behavior Analyst, Speech and Language Pathologist, Attorney, or other appropriate professional.

Questions or problems regarding this web site should be directed to .
Copyright © 2004-2006 FEAT-FMC. All rights reserved. Last modified: 9/21/07 .

Warning: Autism Speaks is a hate group that has been protested by Autistic people since their inception.

Autism Speaks is not just an organization, they are also the largest private investor in research, have immeasurable influence over healthcare and services that affects Autistic people’s lives, while at the same time excluding Autistics from having representation in legislation about us. This organization has pushed Autistic abuse as therapy and eugenics as the cure.

Only recently has Autism Speaks made a show at inclusion — they co-opted the Autistic civil rights movement symbolism and are now trying to pretend their part of the Autistic civil rights movement — without ever acknowleding, apologizing, making transparent their true history and involvement in the suppression of Autistic voices all these years.

Fact: Autistics have been protesting Autism Speaks since 2005 for our basic civil and human rights.

Warning: This is quackery. “Natural” and other products and pseudoscience practices promoted for ‘healing, recovery, cure’ have harmed and even killed Autistics worldwide.

Now these extremist fringe groups have expanded to gaslight the public on COVID-19 ‘cures, healing, recovery” and many other arenas.

The Autistic Community is very familiar with quack cults like this … we’ve been battling the same group who has had many identifying names like: Mercury Mob/Mafia, Antivaxxers, BleachCult, and many more. These folks and organizations also battle Autistics over our civil and human rights. The names change, but the people, for the most part, remain the same.

Fact: Autistics are not vaccine-injured and Vaccines do not cause autism.

PSA: Don’t Drink Bleach.

By Eve Reiland

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