Kim Musheno, Director of Legislative Affairs. Ellen Jensby, Policy Analyst. Amie Lulinski-Norris, Policy Fellow

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1 Kim Musheno, Director of Legislative Affairs Ellen Jensby, Policy Analyst Amie Lulinski-Norris, Policy Fellow

2 Issues in the 112 th Congress Combating Autism Reauthorization Act Health Care Reform Implementation Budget & Appropriations Medicaid Education Reform DD Act Restraint & Seclusion in Schools Lifespan Respite

3 112 th Congress Extremely partisan New Republican members want extreme cuts, shrink federal footprint, shift costs to states Democratic-controlled Senate trying to protect priorities

4 Combating Autism Reauthorization Act (P.L ) Signed into Law September 30, 2011!! TOUGHER THAN ANTICIPATED, BUT WE GOT IT!

5 CARA Process Two-year process developing comprehensive bill Bipartisan bills introduced in May HR 2005 Reps. Chris Smith (R-NJ) & Mike Doyle (D-PA) S Sens. Robert Menendez (D-NJ) & Mike Enzi (R- WY) with Scott Brown (R-MA), Richard Durbin (D-IL) Simple reauthorization separate service bills

condition-specific legislation Confusion about need to reauthorize

6 Hurdles Lost support of some autism organizations Resistance to reauthorize laws with sunsets easy $ House against disease- or condition-specific legislation Confusion about need to reauthorize (Insel testimony) Sens. Coburn & DeMint: don t tell researchers at NIH what to do

7 Overcame obstacles in House Reps. Smith & Doyle held press conference, urged Senate to pass AUCD coordinated grassroots strategy to prevail in Senate

8 September 30, 2011 George Jesien attended Signing Ceremony in the Oval Office

9 What does CARA do? $22 m for surveillance at CDC Extends Combating Autism Act of 2006 for three years at current (FY 2011) funding levels $48 m for early detection, professional training and development of interventions through HRSA $161 m for autism research at NIH Reauthorizes Interagency Autism Coordinating Committee

10 Autism Services Inactive CARA does not include services for transition-age youth and adults or supplemental funding for UCEDDs to provide TA, train professionals, conduct research and develop model services TRAIN Act not passed or reintroduced Active Autism Services and Workforce Acceleration Act (S. 850) Sen. Richard Durbin (D-IL) Autism Services and Workforce Acceleration Act (S. 850) Sen. Richard Durbin (D-IL) Autism Spectrum Disorders Services Act (S. 1132, H.R. 2007) Sen. Menendez (D-NJ), Reps. Smith (R-NJ) and Doyle (D-PA) National Autism Spectrum Disorders Initiative Act (S. 1128, H.R. 2006) Sen. Menendez, Rep. Smith

11 Thank you and Lessons Learned Lesson #1 Lesson #2 Lesson #3 Lesson #4 Lesson #5 AUCD network rose to the occasion! Education works! Importance of having representation Developing and maintaining relationships LENDs were needed!

12 BUDGET & APPROPRIATIONS

13 Background Congress spent first half of year on FY 2011 Passed multiple continuing resolutions before passing a long-term CR to fund the rest of fiscal year 2011 on April 15 DD Act programs spared from direct cuts 0.2% across-the-board cut Debt ceiling fight lasted through the summer, stalled work on FY 2012 appropriations

14 Debt Ceiling Deal: Budget Control Act Framing FY 2012 appropriations bills Raised federal debt ceiling Set caps for spending in FY 2012 Created Super Committee to find additional $1.5 trillion in savings by November 23 But, things can always change! If don t enact at least $1.2 trillion savings, automatic across-theboard cuts triggered in January 2013 except entitlement programs

15 Super Committee Can they agree? Will Congress pass their plan? Will plan impact FY 2012?

16 Fiscal Year 2012 President s Budget Operating under continuing resolution (CR) with caps set by BCA (1.5% cut) expires November 18 th Labor-HHS-Education Appropriations Senate bill approved by committee Chairman Rehberg draft: political document with extreme cuts, controversial policy riders. Stalled

17 Appropriations, in millions DEPT. OF HEALTH AND HUMAN SERVICES FY 2011 Final President s FY 2012 Request FY 2012 Senate Committee Senate compared to 2011 FY 2012 House draft House compared to 2011 University Centers for Excellence in DD DD Councils Protection & Advocacy Systems Projects of National Significance Combating Autism Act Autism and Other DD Center on Birth Defects & DD Natl. Institute of Child Health and Human Development 1, , , ,

18 Next Steps for FY 2012 Likely another CR through mid-december Working out a deal between H&S on final bills OUTCOME Omnibus bill OR Long-Term CR

19 In Conclusion Our Job: Uncertain! Very complex, many variables Election year everything could change Success/impact of Super Committee unknown Educate Congress and Administration about what we do and why we are important!

20 Medicaid

21 Medicaid Republican proposals include block grants, repeal of maintenance of effort requirements Obama proposal: blended rate Result? Shift costs to states, loss of coverage Alternatives: CFC, MFP, BIPP

22 Advocacy Activities Medicaid Strike Force House Energy & Commerce Subcommittee on Health Senate Finance Gang of Six Super Committee

27 Health Care Reform

28 Health Care Reform Repeal & defunding efforts Constitutional challenges in courts Implementation continues Community First Choice Option available Oct. 1 Rebalancing Initiatives Health Task Force - Regulations HaB Coalition

29 Class program suspended HHS: no viable path at this time Long-term solvency v. affordability

30 Education Elementary and Secondary Education Act (ESEA), No Child Left Behind Obama Administration s ESEA Flexibility plan Restraint and Seclusion in Schools

31 Elementary and Secondary Education Act (ESEA) Administration Blueprint last year House approaching reform in pieces Senate doing full reauthorization and overhaul

32 House on ESEA Eliminate 43 federal education programs (HR 1891 Setting New Priorities in Education Spending Act) Expand successful charter schools (HR 2218 Empowering Parents through Quality Charter Schools Act, passed House) Allow districts to transfer funds into/out of nearly every K-12 program incl. Title I grants for disadvantaged students (HR 2445 State and Local Funding Flexibility Act) Accountability & teacher quality? Stay tuned

33 Senate on ESEA Draft bill by Sens. Tom Harkin (D-IA) and Michael Enzi (R-WY) HELP Committee approved October 20 Policies kept Policies changed New provisions Important for students with disabilities Concerns from disability perspective

34 Policies Kept Keeps annual testing in reading & math for grades 3-8 and once in high school Keeps disaggregation of data by subgroup Keeps and adds more school turnaround options Keeps state and district report cards: expanded and more accessible

35 Policies Changed Federal accountability State accountability Federal oversight and resources focused on bottom 5% and those with achievement gaps Remaining schools subject to state accountability system Adequate Yearly Progress College- and Career-Ready Standards (states define) So far, does not require subgroup achievement targets Teacher quality standards

36 New Provisions Allows use of growth models Promotes/strengthens Multi-Tiered Systems of Support, Universal Design for Learning, Positive Behavioral Interventions and Supports Allows use of Alternate Assessments for students with the most significant cognitive disabilities (1% rule)

37 Disability Provisions College- and career-ready standards for all students Strengthened standards and assessments Assessment determined by subject 1% cap UDL, MTSS, PBIS

38 Concerns Teacher qualityequitable distribution, parent notification Concerns Inclusion of students with disabilities in state accountability systems No subgroup achievement targets

39 ESEA Flexibility The Obama Administration s Plan B Waive some of NCLB s requirements for states that adopt policies to improve academic achievement College- and Career-Ready expectations for all students State accountability systems (keeps subgroup achievement targets) More info:

40 Restraint & Seclusion in Schools

41 Background Keeping All Students Safe Act passed House in 2010 Similar bill sponsored by Sens. Christopher Dodd and Richard Burr (R-NC) not passed Disagreement in community over IEP issue House bill prohibited no-go in Senate Senate bill allowed in certain circumstances Will be even tougher to get in this Congress

42 Activity in 112 th Congress Keeping All Students Safe Act (HR. 1381) reintroduced by Rep. George Miller (D- CA) Sen. Tom Harkin (D-IA) draft language Bills: Ban most dangerous types of restraint Limit use to emergencies Requires training, parental notification Harkin language bans seclusion, requires identification of antecedents Harkin will offer draft language as an amendment to ESEA bill

43 Other DD Act No action on reauthorization Controversy with P&A Regulations for 2000 reauthorization Lifespan Respite Care Act reauthorization Reps. Cathy McMorris Rodgers (R-WA) and Jim Langevin (D-RI)

44 2012 Policy Fellowship Amie Lulinski-Norris leaving in December Kristina Majewski coming in January Please come to 10 Year celebration New applications welcome over summer!

45 Resources and Q & A Legislative News In Brief CCD: Public Policy under Online Action Center Health Care Hub Funding Announcements

Legislative Affairs Report to the Board of Directors

Legislative Affairs Report to the Board of Directors November 2011 Autism Policy Combating Autism Act Reauthorization The path to reauthorize the Combating Autism Act turned out to be very difficult with