1. History of Disability Legal Advocacy Network 1975 – Developmental Disabilities Assistance and Bill of Rights Act includes Protection & Advocacy. 1977 – Planning grants to State ($20,000). 1978 – Protection & Advocacy begin operations with State Designations

2. PRINCIPLES OF PROTECTION & ADVOCACY SYSTEMS CLIENT DIRECTED LEGALLY BASED INDEPENDENT ADVOCACY CONSUMER MANAGED

3. STRUCTURE Governor’s Designation Ongoing Nature Re-designation for Good Cause Only –Not pursing mandates –Not aggressive advocates 5% Monitoring/ Administrative Supplement & Supplant

4. STRUCTURE Formula Grant Minimums All Boats Rise Together Stability Build Capacity

5. STRUCTURE Specialist Authority “Purse legal, administrative & other appropriate remedies” Range of Issues Ranges of Remedies Ability to Respond Access Persons Records Facility

6. STRUCTURE Fiscal Accountability A-133 Private Audit OIG Oversight

7. STRUCTURE Continuum of Remedies

8. Continuum of Advocacy Services  Information and Referrals  Training Consumers – Professional  Self – Advocacy Skills  Counseling and Advice  Negotiation and Mediation  Administrative Action  Individual Litigation  Monitoring  Interaction with Policymakers  Class Action  Legislative Advocacy

9. STRUCTURE Priority Setting Consumer Involvement Saying NO Flexibility

10. STRUCTURE Grievance Procedure Individual Grievance Third Party Grievance (PAIMI Only)

11. History of Disability Legal Advocacy Network 1980 – National Association of Protection & Advocacy Systems, Inc. (NAPAS) formed. 1981 – Dues collected. 1982 – First NAPAS staff hired. 1984 – Client Assistant Program reauthorized as formula grant program. 1986 – Protection & Advocacy for Mentally Ill Individuals program enacted.

12. 1989 – PAIR Demos 1991 – Protection & Advocacy for Individual Rights program reauthorized to formula grant 1993 – PAIR Trigger Reached 1993 – Assistive Technology Subcontracts 1998 – Direct AT Fund 1999 – TTWWIA Act Passes 2001 – PABSS Funded 2001 – PAIMI to community expansion Traumatic Brain Injury P&A 2001 – Brain Injury Authorized 2002 – Brain Injury Competitive Grants - $1.5 million – 33 Awards 2002 – Voting P&A authorized @ $10 million 2003 – BI moves to formula Voting P&A Funded

14. National Association of Protection and Advocacy Systems Program Statistics FY 2001 PADD%PAIR%CAP%PAIMITotal% MI1,4556.11,27911.21,69220.917,07221,48835.6 MR6,56527.71861.62493.17,00011.6 TBI/HEAD Injury4972.14503.93524.31,2992.2 NEUROL162.71,25310.96087.52,0233.3 ORTHO1,7977.62,82524.61,73621.46,35810.5 HI/Deaf6302.77196.34185.21,7672.9 AIDS16.11321.274.9222.3 LD3,14413.31,0779.47018.74,9228.2 Blind/VI4491.96015.288410.91,9343.2 CP1,7227.31,7222.9 Other Disability7,27530.73,66831.21,38917.112,33220.4 Totals23,70211,4718,10317,07260,348100

15. Programs FY 2002 PADD $35 MILLION PAIMI $32.5 MILLION PAIR $15.2 MILLION CAP $12.1 MILLION AT $2.686 MILLION PABSS $7 MILLION PATBI 1.5 MILLION FY 2003 PADD $ 36.5 MILLION PAIMI $34 MILLION PAIR $17 MILLION CAP $12..2 MILLION AT $4.5 MILLION PABSS $7 MILLION PATBI $3 MILLION VOTING P&A $2 MILLION

16. DHHS ADD PADDPAIMI CMHS HRSA PATBI DOE OSERS RSA CAP PAIR NIDDR AT OSEP ? SSA PABSS VOTING P&A

17. Trends in TA Requests re P&A Access Authority (last six months) July 2003 Lack of awareness re P&A mandates Hospital records (based on CMS reports of restraint deaths) Access to psychiatric residential treatment facilities and records (new CMS restraint regs) State investigation reports, including police and licensing and certification reports (restraint) Physical access to monitor conditions Public schools coverage Access to treatment team meetings Death reports Record of groups (classes) people subject to abuse Staff interviews Peer review records (NH, IA, PA and CO litigated) Role of guardian in access (AL, CT, MA, and IA litigated) Investigation of rights violations (community placement, financial exploitation) Prison access (CT litigated successfully) Burden to show probable cause (widely litigated) Conflicts with other Federal laws (re education, drug treatment and medical records) and Impact of HIPPA regulations authority

18. TA Provided through NAPAS Contract frequent oral advice Site visits from contract staff Peer-to-peer consultations draft outlines for briefs review and revise briefs and complaints prepare case and regulatory outlines prepare notices on new case developments update web site (which has extensive resources) docket of access (and abuse) cases draft outlines for agreements/negotiations provide model policies, briefs, etc