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Federal Legislative Update
     CAAI Meeting
Combating Autism Act
Authorizes $210 million in FY2010:
  143.5 for NIH research into causes, diagnosis, early
  detection, intervention, and treatment
  $19.5 million for the CDC’s Disabilities Surveillance
  and Research Program
  $47 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
     For LENDS - $28.2 or +$2 million expected


                                                           2
FY 2010 Appropriations
House passed 12 bills; Senate passed 3
Continuing resolution at FY 09 levels
Labor, HHS, Education Appropriations
bill passed by House but not full Senate
Likely to be included in omnibus – split
difference between H&S bills
Hope to have bill by end December!

                                           3
Combating Autism Act
   (PL 109-416) Signed De. 16, 2006
The law authorized expansion of
interdisciplinary training to increase number
of sites able to diagnose or rule out ASD or
other DD; and
To expand existing or develop new
maternal and child health interdisciplinary
leadership in neurodevelopmental and
related disability programs in States that do
not have such a program                    4
Now 39 LENDs in 33 states
 FY 2008 four new LENDs in Arkansas, Colorado,
 Connecticut, and Illinois and awarding 18
 supplemental grants to existing LENDs
 FY 2009 increase of $2 million provided partial
 expansion to 17 LENDs that had not received
 the previous year’s expansion dollars and to
 establish one more LEND in the state of
 Minnesota.
 FY2010 appropriations will provide $2 million to
 establish up to two new LENDs and to complete
 the award of supplemental grants for existing
 programs.                                        5
CAA Reauthorization
 CAA expires in 2011 and must be
 reauthorized
 Each section contains sunset provision
 Discussions likely to begin next year….
 After health care reform
 Start educating your members on the
 Senate HELP and House Energy and
 Commerce Committees
                                           6
Health Care
Reform




              7
What’s Happening?
 House passed HR 3962 Nov. 7 on vote of
 220 – 215 with one GOP
 Senate in second week of debate
 Major outstanding issues are public option,
 abortion, and cost of the bill
 Hope to have Senate bill by Christmas
 Must then conference the bill and pass
 final bill by both chambers
                                           8
Health reform critical provisions
 Exchange or market place for people
 without insurance to shop for plans
 Expansion of Medicaid to households
 earning less than 133-150% FPL
 Cannot deny coverage based on pre-
 existing conditions
 Elimination of annual and lifetime caps
 Employer mandates
 Individual mandate and subsidies          9
Critical provisions
 Rep. Doyle (PA) and Sen. Menendez (NJ)
 Minimum services includes “mental health
 and substance use disorder services,
 including behavioral health treatment.”




                                        10
Autism training grants
 Authorizes grants to UCEDDs or other
 interdisciplinary education, research, and
 service entities
 To provide training, continuing education, TA,
 and information to improve services and address
 unmet needs of ASD and related DD
 Authorizes establishment of up to 4 new
 UCEDDs to improve services to individuals with
 ASD with priority to minority serving institutions
Long term services in health
reform
 Community Living Assistance Services
 and Supports (CLASS) Act
 Community First Choice Option (Sec. 101
 of the Community Choice Act)




                                           12
CLASS Act
 National LTSS Insurance program
 For working individuals (18 and up)
 Auto-enrollment through employer with
 opt-out
 Self-funded and reduces deficit and
 Medicaid spending


                                         13
CLASS Act
Participants vested after 5 years
Estimated monthly premium $125/mo.
Eligibility for cash payments (average
$75/day) based on needing assistance to
perform at least 2 activities of daily living
ADL = eating, toileting, transferring, bathing,
dressing, continence
To purchase non-medical services and
supports to maintain independence
                                             14
Community First Choice (CFC)
 Core elements of the Community Choice
 Act (Section 101 of S. 683/HR 1670)
 Medicaid State Plan option (not mandate)
 To provide community-based attendant
 services and supports
 Individuals eligible for nursing homes and
 other institutional settings
 6% enhanced FMAP for states that select
 the CFC option
                                              15
Autism Treatment Acceleration Act
  S. 819 introduced by Sen. Durbin, Casey
  (D-PA), and Menendez (D-NJ) on April 2
  H.R. 2413 introduced by Mike Doyle (D-PA)
  and Chris Smith (R-NJ) on May 14
  Comprehensive services bill that focuses
  on services across lifespan, not just
  children
  Combines elements of Sens. Clinton and
  Obama/Durbin bills from last Congress
Acceleration Act
              Main elements
Demonstration project to develop comprehensive,
coordinated autism services
Demonstration grants to develop adult services
Voluntary population-based registry
Provision to strengthen existing national, regional, and
local networks
National training initiatives to provide interdisciplinary
training, continuing education initiatives, and technical
assistance
Requires that health insurers cover the diagnosis and
treatment of ASD, including ABA, assistive
communication and assistive technology devices
                                                             17
Seclusion and Restraints
 Jan. 2009 NDRN Report outlines the problem
 GAO Report requested by Chairman Miller
 Less than half of states have laws or regulations
 concerning restraint or seclusion use in schools;
 almost (90%) still allow prone restraints, and
 only 45% require or recommend that schools
 notify parents
 Most cases identified involved kids with
 disabilities and majority diagnosed with autism
 Federal law (Children’s Health Act) only pertains
 to public facilities, not schools               18
AUCD Recommendations
 Federal legislation to ban use of seclusion
 and prone restraints and other types of
 restraints except in case of immediate
 physical safety of students or staff
 Mandate development comprehensive
 continuum of positive behavior supports
 and interventions in every school
 Authorize funding for UCEDDs to provide
 training and TA                           19
Next Steps
 Chairman Miller (D-CA) and Rep.
 McMorris Rodgers (R-WA) of House
 Education and Labor Committee will
 introduce bill this Wednesday
 Sen. Dodd (D-CT) working with House to
 draft bipartisan, bicameral legislation
 Need Republican co-sponsor in Senate

                                           20
Other Legislation Coming Up

After health care reform….

  WIA Reauthorization
  DD Act Reauthorization
  NCLB Reauthorization




                              21
Resources
 AUCD: http://www.aucd.org
   Public policy/Autism
   Legislative News In Brief
   Action Center:
   http://www.aucd.org/template/capwiz.cfm
 Consortium for Citizens with Disabilities (CCD)
 Autism Task Force: http://www.c-c-d.org

                                               22

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Federal Legislative Update CAAI Meeting 2009

  • 2. Combating Autism Act Authorizes $210 million in FY2010: 143.5 for NIH research into causes, diagnosis, early detection, intervention, and treatment $19.5 million for the CDC’s Disabilities Surveillance and Research Program $47 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 For LENDS - $28.2 or +$2 million expected 2
  • 3. FY 2010 Appropriations House passed 12 bills; Senate passed 3 Continuing resolution at FY 09 levels Labor, HHS, Education Appropriations bill passed by House but not full Senate Likely to be included in omnibus – split difference between H&S bills Hope to have bill by end December! 3
  • 4. Combating Autism Act (PL 109-416) Signed De. 16, 2006 The law authorized expansion of interdisciplinary training to increase number of sites able to diagnose or rule out ASD or other DD; and To expand existing or develop new maternal and child health interdisciplinary leadership in neurodevelopmental and related disability programs in States that do not have such a program 4
  • 5. Now 39 LENDs in 33 states FY 2008 four new LENDs in Arkansas, Colorado, Connecticut, and Illinois and awarding 18 supplemental grants to existing LENDs FY 2009 increase of $2 million provided partial expansion to 17 LENDs that had not received the previous year’s expansion dollars and to establish one more LEND in the state of Minnesota. FY2010 appropriations will provide $2 million to establish up to two new LENDs and to complete the award of supplemental grants for existing programs. 5
  • 6. CAA Reauthorization CAA expires in 2011 and must be reauthorized Each section contains sunset provision Discussions likely to begin next year…. After health care reform Start educating your members on the Senate HELP and House Energy and Commerce Committees 6
  • 8. What’s Happening? House passed HR 3962 Nov. 7 on vote of 220 – 215 with one GOP Senate in second week of debate Major outstanding issues are public option, abortion, and cost of the bill Hope to have Senate bill by Christmas Must then conference the bill and pass final bill by both chambers 8
  • 9. Health reform critical provisions Exchange or market place for people without insurance to shop for plans Expansion of Medicaid to households earning less than 133-150% FPL Cannot deny coverage based on pre- existing conditions Elimination of annual and lifetime caps Employer mandates Individual mandate and subsidies 9
  • 10. Critical provisions Rep. Doyle (PA) and Sen. Menendez (NJ) Minimum services includes “mental health and substance use disorder services, including behavioral health treatment.” 10
  • 11. Autism training grants Authorizes grants to UCEDDs or other interdisciplinary education, research, and service entities To provide training, continuing education, TA, and information to improve services and address unmet needs of ASD and related DD Authorizes establishment of up to 4 new UCEDDs to improve services to individuals with ASD with priority to minority serving institutions
  • 12. Long term services in health reform Community Living Assistance Services and Supports (CLASS) Act Community First Choice Option (Sec. 101 of the Community Choice Act) 12
  • 13. CLASS Act National LTSS Insurance program For working individuals (18 and up) Auto-enrollment through employer with opt-out Self-funded and reduces deficit and Medicaid spending 13
  • 14. CLASS Act Participants vested after 5 years Estimated monthly premium $125/mo. Eligibility for cash payments (average $75/day) based on needing assistance to perform at least 2 activities of daily living ADL = eating, toileting, transferring, bathing, dressing, continence To purchase non-medical services and supports to maintain independence 14
  • 15. Community First Choice (CFC) Core elements of the Community Choice Act (Section 101 of S. 683/HR 1670) Medicaid State Plan option (not mandate) To provide community-based attendant services and supports Individuals eligible for nursing homes and other institutional settings 6% enhanced FMAP for states that select the CFC option 15
  • 16. Autism Treatment Acceleration Act S. 819 introduced by Sen. Durbin, Casey (D-PA), and Menendez (D-NJ) on April 2 H.R. 2413 introduced by Mike Doyle (D-PA) and Chris Smith (R-NJ) on May 14 Comprehensive services bill that focuses on services across lifespan, not just children Combines elements of Sens. Clinton and Obama/Durbin bills from last Congress
  • 17. Acceleration Act Main elements Demonstration project to develop comprehensive, coordinated autism services Demonstration grants to develop adult services Voluntary population-based registry Provision to strengthen existing national, regional, and local networks National training initiatives to provide interdisciplinary training, continuing education initiatives, and technical assistance Requires that health insurers cover the diagnosis and treatment of ASD, including ABA, assistive communication and assistive technology devices 17
  • 18. Seclusion and Restraints Jan. 2009 NDRN Report outlines the problem GAO Report requested by Chairman Miller Less than half of states have laws or regulations concerning restraint or seclusion use in schools; almost (90%) still allow prone restraints, and only 45% require or recommend that schools notify parents Most cases identified involved kids with disabilities and majority diagnosed with autism Federal law (Children’s Health Act) only pertains to public facilities, not schools 18
  • 19. AUCD Recommendations Federal legislation to ban use of seclusion and prone restraints and other types of restraints except in case of immediate physical safety of students or staff Mandate development comprehensive continuum of positive behavior supports and interventions in every school Authorize funding for UCEDDs to provide training and TA 19
  • 20. Next Steps Chairman Miller (D-CA) and Rep. McMorris Rodgers (R-WA) of House Education and Labor Committee will introduce bill this Wednesday Sen. Dodd (D-CT) working with House to draft bipartisan, bicameral legislation Need Republican co-sponsor in Senate 20
  • 21. Other Legislation Coming Up After health care reform…. WIA Reauthorization DD Act Reauthorization NCLB Reauthorization 21
  • 22. Resources AUCD: http://www.aucd.org Public policy/Autism Legislative News In Brief Action Center: http://www.aucd.org/template/capwiz.cfm Consortium for Citizens with Disabilities (CCD) Autism Task Force: http://www.c-c-d.org 22