MAIRC Michigan Autism Insurance Reform Coalition

1. MAIRCMichigan Autism Insurance Reform Coalition - Advancing Insurance Reform In Michigan - A significant cost savings opportunity for Michigan taxpayers March 1, 2011

2. Change Will Come About When We Make It Happen

3. Background Overview • Over the lifespan and without medical treatment, the average societal cost of caring for 1 person with autism is $3.7 million. (Harvard School of Public Health, 2006). • Today, 1 in 110 individuals (1 in 70 boys) is diagnosed with Autism Spectrum Disorder (ASD), making it more common than pediatric cancer and diabetes combined. It occurs in all racial, ethnic, and social groups. • There are 15,000 children with autism in Michigan. • Without treatment – imagine a life of constant and exhausting supervision, daily/hourly emotional and behavioral issues. Confinement to home, no friends, and almost complete isolation, limited learning and a lifetime of dependency or institutionalization. • Research has shown that the earlier the treatments, the greater the lifetime impact to the child. If autism is not treated, in many cases the child will likely require full time care for the rest of his or her life. The cost for non treatment is incurred by Michigan companies (disabled children usually get lifetime medical insurance), families and the State of Michigan. • Healthcare plans in Michigan systematically excluded many of the prescribed, medically proven treatments for autism.  • In addition to the crushing financial burden, the time, energy and stress of parenting children with autism can impact employment, health and marriage. Divorce rates for parents of children with autism are extremely high.

4. Untreated Autism has a significant impact on society Higher Societal Cost Overwhelming Impact on Public Agencies (especially in adult care) Higher Incident Rates Tidal wave Impact on Schools Lack of Insurance Coverage Delays in Diagnosis and Implementing Treatment Plan Lack of Trained Professionals

5. Economic Reform for MichiganWhat do we know? Key Assumptions • 15,000 or more children in Michigan with autism. • Research shows with early identification, appropriate intervention and treatment, almost 50% recover typical function and another 40% make significant progress. • Less than 20% of Michigan’s children with autism receive the access to therapies and services . • Not acting is the high cost approach, thrusting families into an unfortunate situation and pushing children into schools without services.

6. Impact on Lifetime Societal Cost Conservative total Michigan lifetime cost savings: $14,000,000,000, not including ERISA Plans. Michigan coverage: 50% Non-ERISA, 50% ERISA

7. Insurance Premium Impact • Initial monthly cost for a family are about $1.50 per month or .14% increase • Initial individual costs are 55¢ per month • A small business with 50 employees will spend a little over $300 in the first year • Premium increase is estimated at less than 1% • In states that have passed legislation, early data shows experience as low as 1/10 of 1% • Initial costs will be low because it will take 3-5 years for the supply of therapists and service providers to fill the demand

8. Taxpayers and Businesses pay high costs today -- Example Lack of assessment and therapies prevent 50% of Michigan’s children with autism from attaining normal function by school age. High Cost Option: $60,000 per student per year $3 billion cost to Michigan schools over life of 14,000 children with autism Results: • Autism class with 6 students to one teacher. • Every child has full-time aid, some two. • Education until age 26. • Emergency interventions, restraints and police response are common. • Extensive meetings with administrators and lawyers. • Training for all teachers and staff on how to handle untreated students. • Special transportation. • Annual costs embedded in school taxes. • Diverts resources from all programs. • More time spent on avoiding behavior problems than learning.

9. Legislative Reform in MichiganWhere We Have Been – 2009-10 • Michigan autism advocates and parent groups took up the banner and led the fight to have autism-related services included under Michigan insurance law. • Rep. Angerer and Rep. Ball introduced HB 4476 and HB 4183 in the last session of the state legislature and two bills (one for non-for-profit and the other for for-profit insurance companies) passed in the state House of Representatives. • The legislation moved to the state Senate where it was bottled up in Committee and no formal hearings on the bill where held (though informal field hearings were conducted) • In the closing days of the legislative (or “lame duck) session a concerted effort was made to discharge the bill from committee and bring to the Senate floor for a vote. • While there was a sense that the bill would pass and be signed into law if it could get a vote, the Senate leadership failed to bring the legislation for consideration and it died as a result of the full Senate’s having taken no action

10. Taking no action is the high cost solution for Business Employees (Parents) and Employer High stress and distraction Absenteeism Higher parental medical costs Lifetime medical coverage Higher Taxes – State and Local Intensive school support Social Services Housing Medical Services Transportation Police Societal Parent lost wage Parent bankruptcy No Insurance No Therapist No Services No Improvement High Cost

11. Why Business Should Support an Autism Benefit(DTE Executive Chair Tony Earley’s Perspective) • Greater employee productivity. • Employee retention is maximized – employees will not feel the need to leave Michigan in search of a job with state-regulated insurance. • Children who achieve higher levels of functioning • have lower overall health care costs • do better in school • need less assistance from their families, from whom autism often exacts a terrible financial and psychological toll • A child is given the opportunity for a functional, happy life and is saved from a lifetime of institutionalization.

12. Benefit to Michigan Schools and Jobs • Studies in other states show early assessment and intervention will reduce the need for special education services over 18 years, saving $200,000 per child. • Even if you can self-pay today, therapists are almost non-existent: Board Certified Behavior Therapists: Michigan: 60 Florida: 1,800 • Michigan college graduates leave Michigan for states with autism insurance. • Sound public policy • Supports schools by lowering school age cost by $3 billion • Creates good paying professional jobs.

13. Legislative Reform in MichiganWhere We Are Now • Michigan government has changed dramatically since last year with a new Republican Governor Rick Snyder, Lt. Governor Brian Calleyand GOP control of both the House and Senate • Due to term limits and other factors, there are 26 new members of the state Senate and 63 of 110 new members of the state House • The new leadership of the state Senate includes Majority Leader Randy Richardvilleof Monroe and Majority Floor Leader Sen. ArlanMeekoffof Ottawa County • Democrat leaders in the Senate include Sen. Gretchen Whitmerof East Lansing as Leader and Floor Leader Sen. Tupac Hunter of Detroit • On the House side, the new Speaker of the House is Rep. Jase Bolger of Marshall, Speaker Pro Tem Rep. John Walsh of Livonia and Majority Floor Leader Rep. Jim Stamasof Midland • New Democrat leaders in the House include Leader Rep. Richard Hammelof Genesse County and Rep. Kate Segal of Battle Creek • The Michigan Legislature is embroiled in a very intense and sweeping state budget debate that has absorbed a great deal of time and attention of the legislators • The vast majority of attention by the legislature is now, and will be devoted to passage of the budget targeted for likely no later than the Fourth of July.

14. Legislative Reform in MichiganWhere We Are Now • Momentum is re-emerging in Michigan and across the nation for reform of insurance laws with passage in Virginia and passage in the state House of Arkansas just last week. • One set of bills – SB 38 and SB 39 – have been introduced in the state Senate by Senator Tupac Hunter (D-Detroit) and referred to the Committee on Insurance chaired by Sen. Joe Hune of Howell • We are anticipating a Republican Senator to join in and become a co-champion and possibly introducing a slightly different version of the legislation • We anticipate new legislation being referred to the Senate Health Policy Committee chaired by Senator Jim Marleau(R-Lake Orion) who is a friend of MAIRC and has been given a green light by Senate Majority Leader Randy Richardville (R-Monroe) to hold hearings on the bills • Once we have secured favorable passage from the committee, we would anticipate a vote in the full Senate with the exact schedule to-be-determined • Following Senate passage, we turn our attention to the state House and repeat the process • In the House, the committees of jurisdiction include the Health Policy Committee chaired by Rep. Gail Haines (R-Waterford Twp.) and the Insurance Committee chaired by Rep. Pete Lund (R-Washington Twp.)

15. Legislative Reform in MichiganWhat You Can Do Now 1. Offer your advice, suggestions, ideas and time • This effort can only be accomplished with the effort of everyone in this room and beyond • We are forming this ad hoc coalition – MAIRC – to pull together all the resources in Michigan (and nationally with the help of Autism Speaks) to draw on the experience, relationships and commitment of everyone to achieve our goal • There is no monopoly on wisdom and your input is welcome and encouraged • We need your help in Lansing, but we particularly need your help in your own hometown to educate the community and work from the bottom up 2. Understand the process, be patient and deliberate • As anxious as we are to see autism insurance pass immediately, we must recognize the impact of the consequences of the budget debate and the legislative resources being devoted to its passage • We need to use a rifled approach – not a shotgun – and target our resources to those legislators who are particularly significant to this debate

16. Legislative Reform in MichiganWhat You Can Do Now 3. Build a relationship with your legislator • Don’t just lobby your reps. and senators, get to know them, particularly back home in their district • With the facts on our side, ours is an education campaign • Even if we don’t always agree or share the same priorities, over the long haul your task is to be a resource for your legislator • Take a leadership role in your community, your county or your region of the state • By placing an increased emphasis on the local level in order to build better relationships with legislators, we are looking to have regional coordinators who will work county level supporters • Our objective is not to create another obligation in your lives, but to provide a grassroots network than can assist in attracting new people to the cause and help with the process of education of the benefits of the legislation

17. Legislative Reform in MichiganWhat You Can Do Now 5. Host a meeting in your county to allow proponents to speak to the issue of Autism Insurance Reform in Michigan • MAIRC will provide a speaker who will come to your community and talk to your group about autism and the need for reform in our state’s insurance law • Our speakers can also address service clubs or other organizations in your community to help share the word with local leaders 6. Write or Sign Letters-to-the-Editor or Op-Ed pieces to local newspapers • MAIRC will help provide you with content for your letter 7. Participate in local radio call-in programs • Help build our database and social media sites • Our strength is in our numbers and our ability to mobilize our supporters at the critical time – Facebook and Twitter work – join them! • Gathering names and contact information is vital to our success

18. Legislative Reform in MichiganWhat You Can Do Now 9. Attend community meetings and participate with local organizations – particularly those organized by your representative or senator – to advocate for autism insurance reform • Whether it is the local Lions Club, your local political party organization or a Coffee Session with your representative, it is important that our message is offered at these gatherings in an informative, respectful manner 10. Coordinate with MAIRC and visit your legislator in Lansing • Communication is the key and MAIRC will communicate with you • Plan to visit with your legislator and their staff • Participate and help organize our legislative action days in Lansing – dates to be determined • Working together as a coordinated team will allow us to win this important struggle on behalf of Michigan’s children

19. Key Supporting Arguments This unlike others, is funded and will save at least $14 billion and double that if ERISA plans follow. • I can’t support mandates • Costs will be high and make insurance prohibitively costly Actuarial studies do not support this statement. Initial premium increase is significantly under 1%. • Therapies are experimental This is not true. Therapies are supported by science and the Surgeon General, the National Research Council and the American Academy of Pediatrics. • The schools already provide these services Federal and State laws charge the schools with providing the child with autism a meaningful education. Schools try to accommodate disabilities in the course of educating children with autism. Schools do not, cannot, and should not be tasked with treating the disabling condition by providing medical therapies.

20. Summary • The medical, family, societal and business case has been made. • The legislation is narrow in scope and does not add to Michigan’s budget challenges. In fact, it will help to reduce spending over the long run. • The reform is economically sound. This is a fully funded mandate, different from other proposals. As important, this reform puts at least half of the children out of harm’s way and on a path to a fully functioning, productive life. This is very positive for schools, businesses and Michigan's college graduates with degrees in autism therapies. • MAIRC is prepared to help you make a difference in helping to educate and work to persuade your representative and senator in the merits of Autism Insurance Reform. • With your help, we will make it happen for Michigan’s children.

21. Appendix – FAQ’s What is Autism? • Autism is a general term used to describe a group of complex neurological developmental brains disorder known as Pervasive Developmental Disorders (PDD). How common is Autism? • Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer and juvenile diabetes combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are one out of 70 boys is diagnosed with autism. What causes Autism? • The simple answer is that we don’t know. The vast majority of cases of autism are idiopathic, which means the cause is unknown. • The best scientific evidence available to us today points toward a potential for various combinations of factors causing autism – multiple genetic components that may cause autism on their own or possibly when combined with exposure to as yet undetermined environmental factors.

22. Appendix – FAQ’s (continued) What are the signs? • Research now suggests that children as young as 1 year old can show signs of autism Watch for the red flags of autism • No big smiles or other warm, joyful expressions by six months or thereafter • No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter • No babbling by 12 months • No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months • No words by 16 months • No two-word meaningful phrases (without imitating or repeating) by 24 months • Any loss of speech or babbling or social skills at any age