AUCD legislative activities Legislative Affairs Briefing on AUCD legislative activities Kim Musheno Joe Caldwell David Morrissey

FY 08 Appropriations Conference report on L-HHS-ED increases for DD programs: UCEDD +$4.4 to $37.6M DD Councils +$5 to 77.3M P&A +$3 to $41.7M PNS +$3 to $14.4M New F.S. Clearinghouse +$2M

L-HHS-ED conference LEND +$6 M to expand existing and add new programs MCH +10 M net increase to $683M NCBDDD +6.6 M to $131M NICHD +31.7 M to $1,286B Lifespan Respite $2 M for new law

DD Act Scheduled to be reauthorized, likely in Spring AUCD Recommendations Senate Health, Education, Labor, Pensions Committee House Energy and Commerce Some Parent & Union opposition Need to educate Congress

DD Act Recommendations Expand to include life-long disabilities Double authorization for appropriations for UCEDD Add support for parents with disabilities Family Support – option for systems change or demonstrations Continue and expand Title III Support SABE recommendations for Self-Advocacy

Anti-Class Action bill Rep. Frank bill (H.R. 3995) limits use of class action law suits to protect people in institutions co-sponsors Capuano (D-MA), Lynch (D-MA), Moran (D-VA), and Shea-Porter (D-NH) Need help educating Representatives

SCHIP Reauthorization

House and Senate bills passed in August

SCHIP Reauthorization Compromise bill (H.R. 3963) closer to Senate version Vetoed by President Bush early October Fell about 12 votes short in the House of the required 2/3 majority to override veto House & Senate passed revised version on October 25 Still about 12 votes short in House Democratic leadership and House Republicans still negotiating May pass CR and extend debate into next year In additional money is not provide states will not have enough money to cover current kids Moratorium on Medicaid Rehabilitation and School-Based Services (until January 2010) Politics of larger healthcare debate and election year

New Dental Bills in the Works Children’s Dental Health Improvement Act Makes pediatric dental mandatory under SCHIP Grants for community dental services and oral health promotion, specifically mentioning services to children with Developmental Disabilities Essential Oral Health Care Act Increases federal match (FMAP) to states for dental services for children on SCHIP and Medicaid Tax credits to dentists for service to low-income patients Funding of Community Dental Health Coordinator training and programming SCHIP Reauthorization $200 Million for grants to states to improve dental care access through reimbursement rates and approved services expansions. At this time, this provision is uncertain, along with the rest of SCHIP

CLASS Act Community Living Assistance Services and Supports (CLASS) Act (S.1758/H.R.3001) Establishes national long-term care insurance program Voluntary payroll deductions Would provide a flexible cash benefit Individuals would not have to become impoverished to receive services and supports allow hiring of family caregivers Hearing held on July, 10 2007 AUCD working in coalition to gain lead Republican co-sponsors and bi-partisan support

Community Choice Act (S.799/H.R. 1621) Senators Harkins (D-IA) and Specter (R-PA) Reps. Davis (D-IL) and Shimkus (R-IL) Correct the Medicaid “institutional bias” and provide equal access to community-based services and supports 19 Senate and 41 House co-sponsors Finance Committee hearing held in September New study by RRTC on Personal Assistance Services re-estimated costs at $1.4–3.7 billion compared with $10-20 billion estimate by CBO Chairman Baucus (D-MT) agreed to ask for new CBO score

National Family Caregiver Support Program Provides money to states to provide a range of family support activities (including respite) Authorized at $187 million ($156.1 million FY07) Includes: Caregivers older individuals (55 over) Caregivers of individuals with Alzheimer’s Grandparent caregivers Does not include aging caregivers of adults with disabilities (18-55) Report language in Labor-HHS-ED Appropriations Mary Beth Bruder (CT UCEDD) Tamar Heller (IL UCEDD) Working with Senator Mikulski (D-MD) on fix

Lifespan Respite Care Act (P.L. 109-442) December 2006 Grants to states: to develop statewide respite programs that serve all ages and disabilities Authorizes $40 million for FY08 Currently $2 million in Labor-HHS-ED Appropriations

Autism Spectrum Disorder Prevalence increasing at epidemic proportions: 1 in every 150 As a society, we are not yet prepared to help people with autism live with equality, dignity and independence Too few in the medical community have the knowledge to diagnosis autism at the earliest age Too few schools have the personnel who can effectively educate students with disabilities Too few employers are prepared to hire and support workers with autism

Expanding the Promise to Individuals with Autism Act SENATE Sens. Hillary Clinton (D-NY) and Wayne Allard (R-CO) introduced S. 937 11 co-sponsors (3R, 1 I, 7D) HOUSE Reps. Mike Doyle (D-PA) and Chris Smith (R-NJ) introduced identical companion bill (H.R. 1881) 65 co-sponsors (17R, 50D)

Expanding the Promise Act Authorizes funding for demonstration and planning projects to expand services and supports for children and adults Grants to expand access to post-diagnosis care and to reduce delays in getting services GAO report on improving financing structure Interdisciplinary training of professionals who diagnose and treat individuals (UCEDDs) Other provisions to improve access to services for individuals with ASD and their families

Expanding the Promise - UCEDDs Authorizes $13.4 million in FY 08 to award supplemental grants to UCEDDs $200,000 for each of the 67 Centers to provide training, TA, dissemination, and services, and address the unmet needs of individuals with autism Authorizes $5 million to establish up to 4 new UCEDDs with a primary focus on providing interdisciplinary training and services for individuals with autism and related developmental disabilities.

Combating Autism Act President signed PL 109-416 last year Authorizes $168 million in FY08, $25 million more than FY07 114.5 for NIH research into causes, diagnosis, early detection, intervention, and treatment $16.5 million for the CDC’s Disabilities Surveillance and Research Program $37 million to HRSA to increase awareness, reduce barriers to screening and diagnosis, promote evidence-based interventions for individuals with autism, and train professionals to utilize valid and reliable screening tools to diagnose autism and provide evidence-based interventions

Combating Autism Act and LEND Authorizes Secretary of HHS to expand existing or develop new interdisciplinary Leadership Education in Neurodevelopmental Disabilities (LEND) programs To provide each of the existing 35 LENDs additional funding to train developmental pediatricians, clinical psychologists, and other diagnosticians and interventionists in the coming year and begin to develop programs in States that do not have one.

Empowering Children with Autism through Education Act Rep. Yarmuth (D-KY) introduced H.R. 2609 on June 7 16 co-sponsors Establishes a task force to identify and disseminate evidence-based educational strategies and promising best practices Task Force includes members of UCEDDs TA Clearinghouse Amendment to reauthorization of NCLB Act

Higher Education Act Senate unanimously passed HEA reauthorization bill (S. 1642) on July 24, 2007 Title VII Expanded activities of current post-secondary demo projects for students with disabilities New demonstrations on postsecondary education for students with intellectual disabilities Coordinating Center Access to Pell grants, work study, and campus-based financial aid House Education & Labor Committee Plan to introduce bill by end of month AUCD provided input into additional provisions on postsecondary education

No Child Left Behind Neither House or Senate have yet introduced reauthorization bills AUCD provided recommendations through CCD House Education & Labor Committee released discussion draft in August CCD testimony at House hearing in September Main issue remains the inclusion of students with disabilities in the NCLB accountability system Controversial “2% rule” on modified academic achievement standards (House bill could exclude up to 40% of students with disabilities) Serious concerns about discussions of using IEP as accountability measure Politically momentum has stalled this year and heading into election year next year

Rehabilitation Act Reauthorization Workforce Investment Act Reauthorization Includes the Rehabilitation Act of 1973, but is currently stalled in House and Senate Rehabilitation Act Could move separately Senate HELP Committee drafting new bill Strong participation from advocates, CCD Includes amendments to strengthen youth transition and supported employment services

ADA Restoration Act After 17th Years of the ADA Restores the original intent of the ADA amends the definition of “disability” prevents courts from considering “mitigating measures” when deciding whether an individual qualifies for protection under the law keeps focus in employment cases on the reason for the adverse action 236 bipartisan co-sponsors in House Must be considered by four House committees and two Senate committees House Judiciary Committee held one hearing on the issue and may markup in mid-November House Education Committee possibly to hold a hearing in the beginning of the year and to begin pushing for Senate cosponsors Senate HELP Committee hearing on November 15

Crime Victims with Disabilities Matthew Shepherd Local Law Enforcement Hate Crimes Prevention Act Adds disability to list of protected classes under the federal hate crimes statute Provides additional funds to states to prosecute hate crimes Senate passed in September as amendment to the Department of Defense authorization bill House passed Defense bill without provision Conference bill? Veto? Crimes Victims with Disabilities Awareness Act Title IX of the Crime Control and Prevention Act (S. 2237). To increase awareness, investigation, prosecution, and prevention of crimes against individuals with a disability, including developmental disabilities, and improve services to those who are victimized AUCD, with help of SIG, provided significant input Research grant program to collect data for DOJ National Crime Victims survey – UCEDDs specifically named

Action Center

Action Center

Action Center Activity Total Number Messages Sent in 2007: 652 Top 5 Alerts of 2007 Rank Title # Messages # Activists Labor, HHS, Education Funding 111 messages 55 activists Convention on the Rights of Persons with Disabilities 93 messages 23 activists Funding for Lifespan Respite Care Act 66 messages 18 activists Community Choice Act 48 messages 16 activists UCEDD and LEND FY08 Appropriations 42 messages 33 activists

Action Center Activity Top 5 States Sending Alerts in 2007 Rank Title # Messages # Activists New Jersey 65 messages 16 activists Colorado 63 messages 3 activists New York 53 messages 20 activists Pennsylvania 35 messages 13 activists TIE: North Carolina 34 messages 12 activists Tennessee 34 messages 15 activists

Resources Check out AUCD’s Action Center for Action alerts and sample letters Contact info on congressional delegation Co-sponsorship status of elected officials Read full text of legislation of interest Read In Brief for legislative updates: http://www.aucd.org/template/page.cfm?id=164