There ought to be a law!
http://www.autismone.org/uploads/2006/Kennedy%20Chris.ppt
Knowing what you want—
and how to get it in your state
Christopher M. Kennedy, Esq.
Presented at Autism One, May 26, 2006
THERE OUGHT TO BE A LAW!
The progression or emancipation of any class usually, if not always, takes place through the efforts of individuals of that class.
Harriet Martineau (1802 - 1876)
We need you!
* Network:
o Build on relationships
o Encourage alliances
o Organize: emails, addresses, rapid response networks
o Media contacts
* Preach to the masses, not the choir
* Encourage others to get involved
* Be positive: every little bit helps
* Participate: “Democracy is not a spectator sport”
LOBBYING
o the attempt to influence the passage, defeat, introduction or amendment of legislation
o communication refers to specific legislation
o communication reflects a view on such legislation
Adapted from IRS Publication 1828, Tax Guide for Churches and Religious Organizations - February 2004, by Center for Non-Profit Corporations http://www.njnonprofits.org/
Center for Non-Profit Corporations http://www.njnonprofits.org/
Non-Profit Organizations CAN Lobby
How much?
+ substantiality test
- based on the facts and circumstances of each case
+ expenditure test
- based solely on the amount of money spent for lobbying
(if under $500,000, may be up to 20%)
Center for Non-Profit Corporations http://www.njnonprofits.org/
Prohibited Activities
Center for Non-Profit Corporations http://www.njnonprofits.org/
First Things First
Get organized!
o Join groups
o Create alliances, build coalitions
o Lead, follow or get out of the way!
o Statewide network
o Frame the message
o Sell the message
Dilution of the message
* 1999: 26
* 2003: 119
o Without support of autism groups, without consulting autism community
o Can be providers, parents, geographically limited issues, etc.
o Only one concern, ignores big picture, other issues
(The Chronicle of Philanthropy 1/6/05)
GET ON THE SAME PAGE!
Where are the parents?
There are two primary choices in life: to accept conditions as they exist, or accept responsibility for changing them.
Dr. Denis Waitley
Autism History
Medical disaster:
o Labeled psychological, under schizophrenia
+ Kanner: first identified in 1943
o Until recently, medical community blamed parents!
+ Bettelheim: monstrous “refrigerator mothers” theory
o Now known to be neurological
+ Imaging, biological studies prove autism is a brain disorder
+ But: still defined by behaviors, not biological markers
Autism History
Policy nightmare:
o Huge increases in identified cases in last decade
o No known cause, no known cure, no way to prevent
o Effective interventions are extremely expensive
o As numbers have risen, budgets have shrunk
Autism History
Slow progress:
o Moving slowly from “fool’s errand” to proven investment in children and families
o Lingering misunderstanding, bias: “soft bigotry of low expectations”
o More recognition and awareness, more parent involvement/expertise--but not more money
If there is no struggle there is no progress . . . Power concedes nothing without a demand. It never did and it never will.
Frederick Douglass (1818-1895)
Autism Issues Everywhere
* Task Forces
o Illinois (2005)
o Kentucky (2005)
o Ohio (2004)
o Pennsylvania (2004)
o Maryland (2004)
o Wisconsin (2004)
o Vermont (2004)
o Connecticut (2003)
o Ireland (2001)
o Quebec (2000)
o Oregon (1999)
o Maine (1999)
o Missouri (1998)
o Colorado (1997)
Developing a Plan
(or just killing momentum?)
* Do they accomplish a useful “task”?
* Do they have any “force”?
* Tangible results?
o Changes in law?
o Changes in lives?
Autism Policy Principles
1. Parents must have a seat at the table for all important policymaking decisions
+ If it’s done in our name, it should be done in our interests
2. Person with autism, family have control
+ Provide choices, power to direct how funding is spent
3. Big picture approach
+ Most good for the most people
4. Elimination of self-dealing, conflicts
+ Consult autism families, not just providers/”experts,” BEFORE acting on autism issues
5. URGENCY!!
+ Lives are being lived NOW; “some day” usually means never
Frame the Message
SUPPORT FAMILIES AND INDIVIDUALS WITH AUTISM!!!
(Yes, it’s just about that simple.)
Define your priorities
What do families in your state need most?
“The Big 3”:
# State services
# Health insurance
# Educational system
It does not require a majority to prevail, but rather an irate, tireless minority keen to set brush fires in people's minds.
Samuel Adams (1722-1803)
Autism Numbers
* 1 in 166
o One in every 166 children born today will be diagnosed with an autism spectrum disorder; one in 80 boys
o CDC: “urgent public health problem”
o Fastest growing developmental disability in USA
o Formerly: 1 in 2500; no longer a rare disorder
Source: “Autism A.L.A.R.M." – U.S. Department of Health and Human Services, United States Centers for Disease Control and Prevention, The Medical Home Initiatives and First Signs. (2004)
Autism Numbers
* Autism is more common than:
o Cerebral palsy 1 in 300
o Juvenile diabetes 1 in 400
o Down syndrome 1 in 800
o Hearing loss 1 in 900
o Vision impairment 1 in 1100
o Childhood cancer 1 in 6700
Source: CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD), “Autism Information Center,” http://www.cdc.gov/ncbddd/dd/aic/about/default.htm
1
in
166
Not “diagnostic substitution”
See also, Newschaffer CF, et al, “National autism prevalence trends from United States special education data.” Pediatrics. 2005 Mar;115(3):e277-82 ; Blaxill MF, “Study fails to establish diagnostic substitution as a factor in increased rate of autism,” Pharmacotherapy. 2004 Jun;24(6):812-3.
SOURCE: IATTAP FY04 Highlights & Future Challenges http://www.illinoisautismproject.org/images/FY04%20Highlights.pdf
Illinois autism trend
2004-05 Illinois Autism Numbers
* Increase of 32% from 2002-2003 data
* More than twice as many children as five years ago!
* Trend among young children:
o 70% of children identified with autism in Illinois schools are ages 3-11
o 3 times as many young children as old:
+ Ages 3-5: 956
+ Ages 6-11: 3,701
+ Ages 12-17: 1,721
+ Ages 18-21: 325
* (2003 data)
2004 Illinois Autism Numbers
* Tip of the iceberg?
o Only 8,076 counted by school system
+ Misses many children
+ Many still classified in other categories
# i.e., 8450 children ages 3-5 still listed under “developmental delay”
o Based on population and current prevalence rates, Illinois could have as many as 18,000 to 22,000 individuals with autism.
* “Not all children with an ASD receive special education services under the classification of ‘Autism,’ so the education data underestimate the actual prevalence of the ASDs.”
Source: Centers for Disease Control and Prevention, http://www.cdc.gov/ncbddd/dd/aic/about/default.htm
Today, 3 more Illinois children will be diagnosed with autism.
Falling through the cracks . . .
* State services
o Top-heavy, institution-oriented DD system
o Existing programs not geared to autism and/or full (if they exist)
o No Medicaid waiver for autism
* Insurance
o Exclusions, limitations when it comes to autism
* Schools
o Education system not geared to our children or best practices
o Shortage of qualified teachers, behavior analysts
* Who pays?
o Families, individuals with autism
o Societal toll, huge long term state costs
FUNDING CRISIS
* Illinois is the 9th wealthiest state (per capita avg.), but only 48th in the nation in per capita spending on persons with developmental disabilities in their homes/communities
* State money goes to providers, institutions, agencies, pilot programs, administrative costs—NOT to families
* Financial burden falls almost entirely on parents
* Autism families are going broke—or their children are going without needed help
Medicaid Waiver for Autism
* Empower individuals with autism and their families
* Adds federal matching dollars to state funding
* Create choices through parent/patient driven market for services
* Flexible, to match diverse needs
Medicaid Waivers for Autism
* Keep person with autism in their homes and communities
* Model states with autism waivers:
+ Wisconsin
+ Indiana
+ Maryland
+ Many states provide services through other waiver programs (i.e., SED waiver)
Insurance Coverage
The New Yorker, www.cartoonbank.com
Mental Health Parity Laws
* 46 states law now require insurers to cover “mental illnesses” (usually including autism) to some extent, often requiring minimum hours or tied to amount offered for “physical illnesses”
* Not enough:
o Behavioral interventions are excluded
o Many limitations apply; only certain plans
o Still listing autism under “mental illness”
+ fails to acknowledge physiological, neurological disorder
Mental Health Parity:
Some state Laws
CALIFORNIA (2000) Cal. Ins. Code §10144.5;Cal.Health&SafetyCode §1374.72
COLORADO CO.Rev.Stat. §10-16-104(1.7)
CONNECTICUT (1999) P.A. 99-284
GEORGIA (2001) Ga. Code §33-24-59-10
ILLINOIS (2002) 215 ILCS 5/370(c)
INDIANA Ind.Code §5-10-8-7.1; §27-8-14.2
KANSAS (2001)
KENTUCKY KRS §304.17A-143(1)
LOUISIANA (2000) 22 La.Rev.Stat. §669
MAINE (2003) Me.Rev.Stat. Ti.24-A §2843(5-C)
MARYLAND
MINNESOTA (1995)
MISSOURI 376.1550, RSMo
MONTANA (2001) Mont.Code §33-22-706
NEW HAMPSHIRE (2003) 37 N.H.Rev.Stat.Ann. §417-E:1
NEW JERSEY
NORTH CAROLINA
RHODE ISLAND
TEXAS (2003)
VERMONT (1997) 8 V.S.A. §4089
VIRGINIA (2000) Va.Code Ann. §38.2-3412.1:01
Mental Health Parity:
State Law Obstacles
* Statutes not universally enforced:
o A 2000 study showed 43% of families with children diagnosed as autistic have been denied insurance coverage for the condition
* Insurer denials
o Therapies not “rehabilitative”, unproven
o Therapies are “educational” or part of state benefits
* State laws re: insurance mandates
o Exclude small employers, self-insureds
o Legal Hurdles:
+ Florida § 624.215: mandatory 12-point review for all proposals
* Insurance Lobby
o Massive funding, well-connected, highly organized, unified
o Consumer Choice of Benefits Health Insurance Plan model act
+ Allows employers to offer “alternative” plans exempt from state mandates
Insurance Limitations
The New Yorker, www.cartoonbank.com
Insurance mandates
* Require most insurers to share many costs of autism therapies and treatment
* Indiana: defines ASD as neurological, requires coverage for medically necessary treatments, such as:
o Behavior Training and Behavior Management
o Speech Therapy
o Occupational Therapy
o Physical Therapy
o Medications to address symptoms of ASD
* Kentucky: up to $500 per month above other coverage
Autism Insurance Mandate
* Health insurance policies should be required to cover minimum amounts of therapy above and beyond that which is required by “mental illness” insurance parity law
* Policies should cover behavioral therapies, in addition to ST, OT, DT, PT, pharmacological and “medical/surgical” treatments
Why cover autism?
* Schools, state aid programs, and parents are financially overburdened
* Let parents work
o “no disability claims more parental time and energy than autism” - New York Times, 12/20/04
* RESULTS— “Return on Investment”
o Autism is TREATABLE
o All individuals respond to proper intervention
o Some children respond incredibly well
Why cover autism?
Enormous societal cost:
o $35 billion annually
April 25, 2006: http://www.hsph.harvard.edu/press/releases/press04252006.html
o $43 billion annually
May 2006 editorial
Invest in children with autism
“As many as 85 to 90 percent of children identified as having autism who participate in systematic intervention before they are five years of age gain the ability to talk, which helps them reach their full potential.”
CDC Programs in Brief: Using Developmental Screening to Improve Children’s Health, U.S. Centers for Disease Control and Prevention. 8 April 2005 http://www.cdc.gov/programs/bd10.htm
Invest in children with autism
Early intensive behavioral intervention “critical”
* “Using the outcome studies that have been reported, the rate of children reaching a best-outcome status appears to be between about 10% and 47%.”
* Additionally, “even if the child retains many characteristics of autism, the usual outcome of treatment is that the child learns useful skills. Behavioral intervention results in effective and efficient learning.”
Pediatr. Ann. 2003 Oct;32(10):677-84; Butter EM, Wynn J, Mulick JA
The New Yorker, www.cartoonbank.com
Providers
Provider issues
* Medical providers:
o No consensus: competing theories of cause(s), effective treatments
o Diagnosis based on behaviors, not biological markers
o Specialists:
+ psychology vs. psychiatry vs. neurology
+ too few with autism specialty, long wait lists, expensive
+ paternalistic approach can ignore parent input
o Pediatricians:
+ limited awareness, training
+ “wait and see” approach frustrates early intervention
* Service providers:
o Competing methodologies, interventions, “brands”
o Pilot programs that don’t take off, expand
o Driven by slots and beds, not consumer choice
* Controversy on almost everything:
o Costly, unproven “cures” and alternative approaches
o Even “evidence-based practices” have limited scope, effectiveness, don’t work for all
* Limited insurance coverage:
o Restricts testing, intervention options
o Leads to use of other disorders as primary diagnosis, instead of listing autism
o Effective treatments labeled “experimental” or “habilitative”
* Results for families???
o almost no state service supports
o very little insurance coverage, if any
o hit-or-miss school programs (mostly miss)
o huge geographic, socioeconomic disparities
o overwhelmed, confrontational school systems
o limited access to providers
o “you’re on your own”
Piecemeal approaches
Autism Education
United States Government Accountability Office Report to the Chairman and Ranking Minority Member, Subcommittee on Human Rights and Wellness, Committee on Government Reform, House of Representatives, January 2005
* Most expensive disability category under IDEA:
Autism education standards
Critical features for teaching children with autism:
1. early: “as soon as diagnosis is seriously considered”
+ intensive: “active engagement in intensive instructional programming for a minimum of the equivalent of a full school day,
5 days (at least 25 hours) a week, with full year programming”
+ 1-on-1: “sufficient amounts of adult attention in one-to-one and very small group instruction to meet individualized goals”;
“no more than two young children with autistic spectrum disorders per adult in the classroom”
4. parents: involvement in program and training
5. coordination: “continuous evaluation and adjustment”
Educating Children with Autism, National Research Council (2001)
Autism education standards
+ “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior.”
+ “Intensive, sustained special education programs and behavior therapy early in life can increase the ability of the child with autism to acquire language and ability to learn.”
U.S. Department of Health and Human Services. Mental Health: A Report of the Surgeon General. Rockville, MD: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health, 1999.
Autism education standards
Endorsed by:
American Academy of Pediatrics
American Academy of Child and Adolescent Psychiatry
Surgeon General
National Academy of Sciences
BUT:
“fewer than 10 percent of children with autism are getting the recommended level of therapy”
* Dr. Catherine Lord, lead author, Educating Children with Autism, psychology professor, University of Michigan
Source: NYTimes, “Autism Therapy is Called Effective, but Rare,” by Laurie Tarkan, October 22, 2002
Illinois: Form over substance
* No minimum standards, guidelines exist in Illinois
o Schools only rarely provide critical features needed to educate ASD kids
o Schools only rarely provide intensive behavioral intervention
* No specialty certification, little autism training
“Teachers must be familiar with theory and research concerning best practices for children with autistic spectrum disorders, including methods of applied behavior analysis, naturalistic learning, incidental teaching, assistive technology, socialization, communication, inclusion, adaptation of the environment, language interventions, assessment, and the effective use of data collection systems.”
(National Research Council, 2001)
* Limited federal protections, limited access to advocacy
* Funding shortfalls, geographic disparity
SOURCE: IATTAP FY04 Highlights & Future Challenges http://www.illinoisautismproject.org/images/FY04%20Highlights.pdf
Leaving Children with Autism Behind in Illinois
Leaving Children with Autism Behind in Illinois
Documented examples (from a single case):
“Students were seated around the room in chairs or on the floor where they were simply ignored for most of the day, some rocking, some banging their heads against the wall, some being provided only rubber bands with which to amuse themselves, while two unqualified teachers and three classroom aides sat at other tables reading magazines and talking amongst themselves, even with a State monitor in the room.”
“None of the autistic students were allowed to participate in any physical education, science, library, or any other classes or activities with their non-disabled peers, despite having IEP documentation to the contrary.”
“IEP files were missing”; “teachers had received no training in autism techniques or methods”
“The school’s autism program was being staffed solely by a series of rotating day-to-day substitute teachers lacking any teaching credentials.”
Leaving Children with Autism Behind in Illinois
Official responses:
“Not a requirement”
“We can’t say which instructional methods are best”
“We are not required to provide a Cadillac program, so long as we provide a ‘serviceable Chevy’”
“We can’t second-guess the evaluation team”
“There is ‘no need’ for the school to provide these students with an ‘autism-qualified’ teacher, as there is ‘no certification in Illinois for Autism’ and so qualifications or training related to this disability are ‘not required.’”
What can we do?
* Unify parent groups and allies
* Find, motivate, and train parents
* Organize:
o Parent/advocate database by district
o Rapid response network
o Include parents in message development
* Communicate one message
What can we do? Parents’ role
* Be counted: waitlists, databases
* Stay informed
* Contact your legislators:
o Personal relationships make the difference
o Write a personal letter
+ “Day in the life”
+ Ask for help/action
+ Photos
o Visit district, capitol offices
o Call on bills
o Work in community, on campaigns
* Help: get others involved
Writing To Your Legislators
* Address the envelope and inner address title as “The Honorable Jane Doe” begin the letter Dear Senator Doe,”
* Be as brief as possible, a page or two is best
* When addressing a specific bill be sure to get the bill number correct and give a brief synopsis of what the bill does; i.e. “HB 4502 creates an Autism Task Force”
* When using facts or statistics make sure they are accurate
* Be polite, don’t threaten or intimidate and don’t remind them you are a taxpayer (they know)
* Individualized, heartfelt, honest letters make a much more significant impact on a legislator than generated copies of formal messages
* Check spelling and grammar, including their name and office
* Include your name, address and phone number so they may contact you if they need to
* If it ‘s a complicated issue that requires more time, offer to schedule a convenient time to discuss the issue further in person or on the phone
courtesy of Laura Cellini, mother/advocate
Meeting your legislators
* Call and schedule a meeting in advance
o Leave your name, address, phone, topic
* Prepare—know info, bring fact sheets
* Dress appropriately, act professionally
* Never mislead, exaggerate
* Know what to ask for—and ASK FOR IT!
* Follow up
* Bipartisan/nonpartisan
The mode by which the inevitable comes to pass is effort.
Oliver Wendell Holmes, Jr. (1841-1935)
* Largest, oldest autism organization in Illinois—30th Anniversary
o Chapter of largest autism organization in the world
o Statewide membership
* Mission to serve those with autism, their families:
o The mission of the Autism Society of Illinois is to promote through advocacy, public awareness, education and research, lifelong access and opportunities for persons within the autism spectrum and their families in order that they may be fully included, participating members of their communities.
* Committee structure
o Legislative committee unites dozens of advocates, groups
www.autismillinois.org
2005 Legislative Success
Autism-specific bills:
* Insurance coverage mandate – Task Force draft √
* Autism Registry and Reporting Act (Senate Bill 1698) – PASSED √
* Medicaid Home and Community Based Services Waiver– Task Force draft √
* Autism Tax Return Check-off (House Bill 18) – PASSED √
* Autism Awareness License Plates (House Bill 14) – died ×
* Giant Steps Center for Excellence Pilot Program (Senate Bill 3) – PASSED √
Autism-related bills:
* Insurance mental health parity (House Bill 59) – PASSED √
* Mercury-Free Vaccine Act (House Bill 511) – PASSED √
* Stem Cell Research Initiative – Executive Order √
* ARC “Do the Right Thing” Agenda for adult services – PASSED √
* Extension of Early Intervention IDEA §635(c) – Task Force draft √
Protect autism teacher training budget:– CUTS RESTORED √
Oppose certain Special Education bills:
* Reduction of state regulations to federal minimums (House Bill 160) – KILLED √
* Imposition of attorneys fees on parents– KILLED before introduction √
2006 Autism Agenda: FAMILIES
1. Medicaid waiver
+ Create statewide, consumer-driven market for services
+ How: Support families, individuals directly
2. Insurance fairness
+ Require coverage to share the burden, invest in individuals
+ How: Cover proven interventions
3. Improve schools’ performance, quality
+ Increase focus on best practices, not bare minimums
+ How: BCBA certification, program quality indicators
2006 Autism Agenda: FAMILIES
Medicaid Waiver
* Provide flexible, direct services to families and individuals with autism for community and in-home supports:
a. establish a HCBS Medicaid waiver for children
b. increase funding through existing waivers and support mechanisms for adults
2006 Autism Agenda: FAMILIES
Insurance Fairness
* Enhance insurance coverage for autism treatments:
a. extend mental health parity minimums to HMO's and individual policies
b. mandate specific coverages for autism above and beyond parity minimums
2006 Autism Agenda: FAMILIES
School improvements
* Improve public schools' performance and capacity
a. establish certification for Board Certified Behavior Analysts to impact instruction and supervision of classes involving children with autism (consistent with Corey H. case)
b. increase teacher training capacity.
*requires changes in ISBE rules and policy
2006 Legislative Success
* Insurance coverage mandate for Speech (House Bill 4125)
o PASSED √
* BCBAs in schools (House Bill 4987)
o PASSED √
* Medicaid Home and Community Based Services Waiver (HB5386, SB2415, SB2770)
o Administration application draft in progress √
* Change DD definition (SB2394)
o Extended to November veto session →
Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.
“The Lorax” Dr. Seuss (1904-1991)
©Christopher Kennedy, all rights reserved
Updated 5/2/06
Autism Society of Illinois
2200 South Main Street, Suite 317
Lombard, Illinois 60148-5366
Toll-free: 1-888-691-1270
Phone: (630) 691-1270
Fax: (630) 932-5620
Email: info@autismillinois.org
Christopher Kennedy
Legislative Director
Phone: (847) 295-0300