Autism Summit 2014 - Barbara L'Italien, Governor's Commission on Autism
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Autism Summit 2014 - Barbara L'Italien, Governor's Commission on Autism Presentation Transcript

  • 1. Legislative Training Barbara L’Italien, LItalien@arcmass .org, Director of Government Affairs
  • 2. Introductions Who are you? Where are you from? What is your connection to the disability community?
  • 3. Our History
  • 4. JFK signs bills to combat disabilities, 1963
  • 5. 1970: Consent Decrees and Right to Education
  • 6. 1980: Home & CommunityBased Waivers, Chapter 688Turning 22
  • 7. 1990: ADA, Olmstead, Belchertow n State School Closes
  • 8. 2000: Self-Advocacy Grows Prevention of Cuts & Medicaid Block Grant
  • 9. Postscript – Autism Commission
  • 10. Autism Commission Priorities  1-Expand eligibility criteria for the Department of Developmental Services so that individuals with autism who have IQs over 70 and have substantial functional limitations have access to services  2-Assure that those with autism and a co-occurring mental health condition have equal access to and appropriate services from the Department of Mental Health.
  • 11. 3-Expand intensive services in the home and community for individuals with autism through the Children’s Autism Medicaid Waiver, the Adult Medicaid Waivers, and the Department of Elementary and Secondary Education/Department of Developmental Services Residential Placement Prevention Program.
  • 12. 4-Expand insurance coverage for autism treatments 5-Increase and fortify supports and resources that make it possible to maintain the family unit and assist individuals with autism to live in the community. 6-Determine the number of people with autism in Massachusetts and their support needs by implementing a plan for consistent statewide data collection.
  • 13. 7-Improve access to autism screening, diagnosis, and Autism Specialty Services through Early Intervention for children diagnosed with autism and those considered at high risk for autism. 8-Increase employment opportunities for individuals with autism by providing a range of job training, job development, and employment opportunities.
  • 14. 9-Increase capacity to provide educational supports and services necessary to meet the needs of all students with autism. 10-Increase availability of augmentative and alternative communication methods, devices and services for individuals with autism.
  • 15. 11-Increase the range of housing options for individuals with autism. 12-Improve the delivery of healthcare services for individuals with autism. 13-Assure that the Autism Commission’s Recommendations are implemented and outcomes are monitored for effectiveness.
  • 16. PRIORITY RECOMMENDATION BILL SPONSO R Sen. Flanagan #1 A) DDS will no longer use an IQbased eligibility requirement for adult services. COMMITTE E BILL # SB 908 #2 #4 C) Require Mass Health to take action necessary to cover medically necessary treatments for individuals with autism. JCF JCF Hearing 05/21/13 Rep. Bradley HB 78 Favorable to Now HB3715 HCF 10/21/13 Sen. Flanagan A) Primary diagnosis of autism will not be used as grounds to find an adult ineligible for DMH services. BILL TITLE SB 909 Rep. Khan HB 1794 Rep. Gregoire HB 1026 An act to permit the Department of Developmental Services provide services to adults with developmental disabilities. An Act to ensure full and equal access to JMH Hearing services from the Department of Mental 9/10/13 Health for individuals with Autism Spectrum Disorder and related conditions Working who otherwise meet the eligibility criteria group for the Department of Mental Health Services. JHC Hearing 6/24/13 An Act relative to MassHealth providing Medically Necessary treatments for members diagnosed with autism
  • 17. PRIORITY #4 RECOMMENDATION BILL SPONSOR C) Require Mass Health to take action necessary to cover medically Rep. necessary treatments for individuals Bradley with autism. #6 B) EOHHS will establish and manage an integrated confidential data system among state agencies and stakeholders. #9 B) DESE will develop and implement a state Autism Discretionary Grant Program for local school districts to increase their capacity to educate students with autism in a manner consistent with their potential and in the least restrictive environment. #9 E) DESE will develop a competency based Autism Endorsement for licensed teachers so that teachers can obtain competencies necessary to educate students with autism in a manner consistent with their potential in the least restrictive environment. BIL L# HB 76 COMMITTE E JCF Hearing 5/21/13 Reported favorably to HCF 12/5/13 JCF Hearing 05/21/13 Rep. Bradley Rep. Bradley Rep. Bradley HB 77 HB 342 HB 344 Included in House IT Bond Bill 11/19/13 JED Hearing Scheduled 6/6/13 JED Hearing Scheduled 9/19/13 BILL TITLE An act to provide equal access to medical treatments essential for children with autism An Act establishing an integrated confidential data system among state agencies to track diagnosis, treatment, services and outcome of individuals with autism An act to establish a discretionary grant program for students with autism An Act to increase capacity to address the complex needs of students with autism
  • 18. PRIORITY RECOMMENDATION #10 D) Revise the Massachusetts education licensure regulations to require that general education teachers and specialists receive sufficient coursework and practical experience in methods of augmentative and alternative communication. AND E) Revise Massachusetts education licensure regulations to require that all teachers address use of assistive technology and augmentative and alternative communication. #11 A) The State Legislature will amend M.G.L. Chapter 40B (affordable housing) to redefine housing for lowincome people with disabilities to count as affordable housing, with each bedroom in a multi-residential house counting as one affordable unit. BILL SPONSOR BILL # COMMITTEE JED Hearing 9/19/13 Rep. Bradley HB 343 Rep. Lewis HB 3364 BILL TITLE An act to improve augmentative and alternative communication opportunities for children with disabilities. JCH Bill redrafted Hearing TBA An Act to promote housing creation for persons with disabilities
  • 19. PRIORITY RECOMMENDATION #12 D) Increase the number of medical providers who are knowledgeable in autism. #12 E) Promote additional specialized training on autism through medical continuing education programs for primary care physicians, neurologists, psychiatrists, dentists, emergency room personnel and other medical specialists. AND F) Encourage hospitals to develop an "autism team" who could be called upon should a patient with autism enter the emergency room, need tests or X-rays, need to be admitted, etc. BILL SPONSOR Rep. Bradley BILL # HB 1061 COMMITTEE/ HEARING JHE Hearing 6/19/13 BILL TITLE An Act creating a scholarship fund to increase the number of medical providers who are knowledgeable in autism JPH Rep. Bradley HB 1900 Hearing 10/17/13 An Act to increase current medical providers' knowledge about autism in order to improve the treatment individuals with autism receive in medical settings JSA #13 A) The Autism Commission will be a permanent entity responsible for overseeing the implementation of the Commission’s recommendations. Hearing Rep. Bradley HB 3321 11/6/13 Favorable vote to Rules Committee 11/21/13 An Act permanently establishing a state autism commission
  • 20. What is Advocacy?  The act of clearly communicating an issue, or cause to educate or persuade change.  Needs to be a year-round series of communication to educate & inform our elected officials.  Can be a simple statement of what you are advocating for – based on unique personal circumstances. Your unique story is far more compelling than a mass-produced talking point!
  • 21. Legislative Advocacy ―We, the ones who are challenged, need to be heard.‖- Hensel
  • 22. 10 Informal Rules of Lobbying  Consider yourself an information source  Tell the truth.  Know who else is on your side.  Know the opposition.  Make the legislator aware of your personal connection  Don’t be afraid to admit you don’t know something.  Be specific about what you’re asking for.  Follow up.  Don’t ―burn any bridges‖  REMEMBER YOU ARE THE BOSS!
  • 23. Tips for Calling Your Legislator  Try to speak directly with your legislator, or ask to speak with a legislative aide.
  • 24. What to say?  Identify yourself, where you’re calling from, and in what capacity  State what you’re calling about.  State what you want  Tell them why you want it  Ask about his/her stand or opinion on the issue.  Thank them for their time and express your appreciation if they are supporting your issue!  Try to keep the call short and courteous!
  • 25. Tips for Writing or Emailing Your Legislator  Name, address, phone number, email  Bill title, bill number, budget line item number, where it is in the process.  Reason for writing, clarify what you want.  Where you stand on the issue  Offer to provide additional info if necessary, thank them for considering your views  A picture of your family.
  • 26. Tips on Meeting With Your Legislator  Why do it?  Where to meet?  Who should go?  What should you say?  What shouldn’t you say?  What legislator may want to know.  What to bring.
  • 27. Tips on Testifying on a Bill What to know. What to expect. What to say.
  • 28. Sample Testimony  Provide an opening statement  Introduce your bill.  Give a paragraph or two about your own situation  Give some information about the bill you are testifying on.  Give a conclusion.
  • 29. Budget Advocacy ―We, the ones who are challenged, need to be heard.‖- Hensel
  • 30. Budget Line Items Line Item 5920-3000 Name Total DDS Family Support $52,364,298 5920-5000 DDS Turning 22 $6,500,000 4120-3000 MRC Supp. Employment $2,175,164
  • 31. Budget for FY’2015 DRAFT Line Item Name Total 5920-3000 Family Support $8,000,000 5920-3010 Autism $3,000,000 5948-0012 7061-0012 DESE-DDS $2,000,000 5920-2025 Employment $20,100,000 5920-5000 Turning 22 $15,200,000 5920-2000 Community Residential $148,000,000 5911-2000 Transportation $5,800,000 4120-3000 4120-2000 MRC Employment MRC CIES $1,000,000 $ 500,000
  • 32. The Budget Process September to December: Impacting Governor’s Budget  State Agency Heads  Cabinet Members
  • 33. February to June 1 4 • • • • budgets… House Ways/Means House Senate Ways and Means Senate
  • 34. June and July • Conference Committee of House and Senate • Governor’s Signature • Address Vetoes as necessary
  • 35. Name examples of when you have been an advocate with School? Support Agencies? Elected Officials?
  • 36. Give an example of where you have shown: Courage? Self-awareness? Confidence?
  • 37. Write down when you have been: A good listener. Able to assimilate information. Translate a challenge into an Action Plan. Able to work with others. Able to delegate tasks.
  • 38. Connecting Advocacy to how it affects individuals and families
  • 39. Autism advocacy
  • 40. Timeline 2005-2010 Event 2005 – Weinstock receives LEND Certificate 2005 – Autism Speaks is established by Bob and Suzanne Wright 2006 – Massachusetts passes Universal Health Care Reform Legislation includes a 2 year moratorium on insurance mandates 40 # of State Mandates 1 1 1 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 41. Timeline 2005-2010 continued Event May 2008 – Advocates for Autism of Massachusetts (AFAM) forms Insurance Committee January 2009 – House Bill 4935, An Act Relative to Insurance Coverage for Autism (ARICA) is filed by Representative Barbara L’Italien October 2009 – Joint Committee on Financial Services holds hearings on ARICA 41 # of State Mandates 5 8 15 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 42. Timeline 2005-2010 continued Event March 2010 – MA releases Fiscal and Policy Analysis of ARICA – Favorable Findings June 2010 – ARICA is discharged from Financial Services Committee July 2010 – MA legislature is vigorously debating casino legislation. ARICA appears to be languishing. 42 # of State Mandates 19 21 22 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 43. July 27, 2010: House passes UNANIMOUSLY July 29, 2010: Senate passes UNANIMOUSLY Delivered to Governor Patrick’s Desk, July 29 at 4:42PM 54 hours and 18 minutes before 43 the end of the session! Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 44. LEND 2005 Capstone Final Page of Poster Presentation  “The person who says it cannot be done should not interrupt the person doing it” – Chinese Proverb  “Leaders are visionaries with a poorly developed sense of fear and no concept of the odds against them” – Dr. Robert Jarvik  “Determine that the thing can and shall be done, and then we shall find the way” – Abraham Lincoln From Mass Family Voices, www.massfamilyvoices.org 44 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 45. How ARICA Became a Law – Fearlessness and Facts “Leaders are visionaries with a poorly developed sense of fear and no concept of the odds against them” – Dr. Robert Jarvik 45 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 46. Facts – MA DHCFP Mandated Benefits Analysis Findings  Autism treatments are medically necessary and have strong evidence to support efficacy.  Cost impact is modest – a fraction of a percent on premiums. Approximately $1.84 Per Member Per Month (PMPM) –we noted that it was ―less than a cup of coffee‖.  Executive Summary:  Annual medical care cost estimates should be considered in the context of potential societal savings outside the medical care system, including those realized in education, social security payments and workplace productivity. 46 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 47. August 3, 2010 -Fenway Park 47 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 48. Fenway signing ceremony 48 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 49. Fenway Signing Ceremony 49 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 50. Then the Real Work Started Legislation Implementation Enforcement 50 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 51. Implementation  Division of Insurance (DOI) held informational meetings  FAQ’s Developed  ARICA Presentations Start  Autism Support Centers  Schools  Clinics  Conferences  State Agencies 51 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 52. The Autism Insurance Resource Center NE Index/UMass Medical School Shriver Center  Established March, 2011 to support the implementation of ARICA  An important tool for corporate advocacy with selffunded ERISA plans  A centralized source of data for regulators, legislators and others on issues and effectiveness  Replicable on a state and national level 52 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 53. Implementation  Implementation has proceeded at a pace consistent, or a bit faster, than experienced in other states.  DOI issued a Consumer Advisory and two Bulletins  Health Plans issued CPT codes for ABA  Consumers and providers continue to have lots of questions:  Covered Treatments  Credentialing by Insurance Companies  Co-Pays, Deductibles  Medical/Education 53 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 54. Impact As a parent, I am very thankful for the guidance and information you provided recently to [provider] with regard to the full denial [insurer] placed on my son's services at the one year review. That was a seriously trying time. As I briefly mentioned to you, the outcome was that the denial was reversed . . . . 54 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 55. Please know that what you and the legion of others that have championed this cause with you have crafted, lobbied for and ultimately passed, is truly an epic achievement. The treatment now available under this legislation is an integral reason my son continues to have the continued opportunity to live at home, stay in his community and remain in his school. Period. Other than maybe donating a life saving organ to somebody, I don't know how much more 'real' or meaningful it gets when it comes to the wellbeing of a child and family in chronic crisis .... 55 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 56. Future Trends
  • 57. Employment National movement away from sheltered workshops & subminimum wage DOJ ruling in Providence, RI November 1,2013 release of MA Employment Blueprint
  • 58. Self-Determination Movement to empower those with disabilities to decide: Where and with whom they want to live What to do for work Education Recreation CMS now includes SD questions for waiver renewal
  • 59. Some Self-Determination Principles Supports for ourselves involve ourselves Supports are as flexible as possible Supports are user-friendly: easy to understand, cultural sensitive, etc. Funding is personalized The system is transparent
  • 60. Rise in Autism Incidence Advocacy in MA and elsewhere to address services and supports MA Autism Commission report & legislative/budgetary agenda DDS & DMH Eligibility bills
  • 61. Rate Increases—Fair Rates Passage of CH. 257 in 2008 and in 2011 new deadlines for implementation were set The goal: human services contract system based on fair and reasonable rates Implementation has taken place for Family Support, Employment, Community Based Day services Residential, Shared Living, Individual Support and others still in process
  • 62. Challenges- State and Federal • • • • • • • Federal Deficit Rising costs of pensions Tax Resistance Infrastructure Needs Health Care Costs Globalization Partisan Politics
  • 63. Questions and Wrap Up Barbara L’Italien, Litalien@arcmass.org Director of Government Affairs