1. SYSTEMS ADVOCACY: MENTAL DISABILITY POLICY Mike Bachhuber Independent Living Council of Wisconsin

2. Systems Advocacy: Mental Disability Policy  Objective of presentation:  Understand the role of CILs and SILCs with respect to systems advocacy  Raise awareness of CIL staff on systems issues and players relevant to consumers with psychiatric labels  Topics addressed:  Standards related to systems advocacy How does your Center do?  Mental Health Consumer Terminology  Philosophy Underlying Services  Systems Advocacy and Collaborators  NCIL MH Civil Rights Task Force  Presenters

3. Standards related to systems advocacy  The purpose … is to promote a philosophy of independent living, including a philosophy of consumer control, peer support, self ‑ help, self ‑ determination, equal access, and individual and system advocacy, in order to maximize the leadership, empowerment, independence, and productivity of individuals with disabilities, and the integration and full inclusion of individuals with disabilities into the mainstream of American society…. Sec. 701 of Rehabilitation Act

4. Standards related to systems advocacy  (1) The center shall promote and practice the independent living philosophy of…  (D) equal access of individuals with significant disabilities to society and to all services, programs, activities, resources, and facilities, whether public or private and regardless of the funding source.  (2) … The center shall provide services to individuals with a range of significant disabilities. The center shall provide services on a cross ‑ disability basis (for individuals with all different types of significant disabilities…. Eligibility for services … shall not be based on the presence of any one or more specific significant disabilities.

5. Standards related to systems advocacy  (4) … The center shall work to increase the availability and improve the quality of community options for independent living....  (6) … The center shall conduct activities to increase the capacity of communities within the service area of the center to meet the needs of individuals with significant disabilities.  Rehabilitation Act Sec. 725(b)

6. How Well Does Your Center Do?  Board and Staff Representation  Does the agency Board of Directors and Staff have representation on a cross disability basis?  Marketing Materials  Do you logo and other marketing strategies represent that your agency provides services on a cross disability basis?  Agency Policy and Procedures  Do you have policies and procedures to accommodate all disabilities?

7. How Well Does Your Center Do?  Agency Culture and Language  Look at language, staff/board perceptions, comfort level, etc.  Agency Collaboration  Does your agency actively collaborate with other organizations that serve persons with mental illness or other disabilities, especially those run by consumers?  Programs and Service  Staff Training and Support

8. Terminology Note  There is no consensus terminology  For reporting, 704 Reports use “Mental/Emotional Disabilities”  Many people with lived experience in the mental health system don’t like the term “consumers”  A movement often uses terms like “psychiatric survivor” or “ex-patient”  Others use terms like “person with a psychiatric disability”

9. Philosophy Underlying Services  “Illness” / “Brain Disorder”  Post-Traumatic Stress and “Extreme Emotional States”  Adverse Childhood Experiences www.cdc.gov/ace  IL Philosophy & Recovery

10. Philosophy Underlying Services  Recovery  National Consensus Statement store.samhsa.govstore.samhsa.gov Self-Direction Individualized and Person-Centered Empowerment Holistic Non-Linear Strengths-Based Peer Support Respect Responsibility Hope

11. Systems Advocacy and Collaborators  Access to services  Private Insurance/MHPAEA  Medical Assistance/Title XIX  Other  Types of service  Traditional/Medical Model “Diagnostic and Statistical Manual” Pharmceuticals “Psychotherapy” Cognitive Behavioral Therapy “Electroshock” or ECT IMD/Hospital Treatments

12. Systems Advocacy and Collaborators  Alternatives Exercise Sunshine Ample sleep Nutrition Omega 3 Fatty Acids Engagement with social connections Peer Support Participation in meaningful tasks Work

13. Systems Advocacy and Collaborators  How to assess services “Evidence-based” Safety and effectiveness  Other issues Access to health care Mental Health Parity – what’s covered? Consumer-run services Trauma-informed care International Solidarity/CRPD

14. Systems Advocacy and Collaborators  Evidence-based Practices www.nrepp.samhsa.gov www.nrepp.samhsa.gov Consumer-Operated Services Evidence-Based Practices (EBP) Kit store.samhsa.govstore.samhsa.gov  To find Consumer-run services: www.ncmhr.org/members.htm www.cdsdirectory.org  Resources from National Empowerment Center www.power2u.org www.power2u.org

15. Systems Advocacy and Collaborators  Recovery  Trauma-informed Care  Civil Rights  Forced treatment  From Privileges to Rights, Nat’l Council on Disability www.ncd.govwww.ncd.gov  Implementation of Olmstead

16. Systems Advocacy and Collaborators  Independent Living  Housing/homelessness Veterans  Self Sufficiency  Employment  Convention on the Rights of People with Disabilities  US International Council on Disabilities www.usicd.orgwww.usicd.org  Disability Rights International www.disabilityrightsintl.org www.disabilityrightsintl.org

17. Systems Advocacy and Collaborators  MH Block Grants and MH Planning and Advisory Councils www.namhpac.orgwww.namhpac.org  Every state receives a block grant  Each state has a Council  The Council must include (42 USC 300x- 3(c)(1)): (B) public and private entities concerned with the need, planning, operation, funding, and use of mental health services and related support services; (C) adults with serious mental illnesses who are receiving (or have received) mental health services….

18. Systems Advocacy and Collaborators  MH Consumer/Recovery Organizations  National Coalition for MH Recovery www.ncmhr.org www.ncmhr.org  Mind Freedom International’s “Amplify” Project www.mindfreedom.org www.mindfreedom.org  National Assoc. for Rights Protection and Advocacy www.narpa.orgwww.narpa.org  Law Project for Psychiatric Rights www.psychrights.org www.psychrights.org

19. Systems Advocacy and Collaborators  Other Potential Partners (non-providers)  Protection and Advocacy Systems (“P&As”) www.ndrn.org www.ndrn.org  National Alliance for Mental Illness (NAMI) www.nami.org www.nami.org  Mental Health America www.nmha.orgwww.nmha.org  The National Federation (Children’s MH) www.ffcmh.org www.ffcmh.org  The Bazelon Center www.bazelon.orgwww.bazelon.org

20. Systems Advocacy and Collaborators  Violence by people with “mental illness” about as common as others in community  Shown by series of studies funded by McArthur foundation  Major exception is use of alcohol or other psycho- active substance

21. NCIL MH Civil Rights Task Force  Statement of Purpose  …works on policy issues that affect consumers with mental health disabilities….  …will work for and with people with all types of disabilities to ensure that mental health programs and services better meet the needs of consumers in the community.

22. NCIL MH Civil Rights Task Force  Statement of Purpose (continued)  …will promote mental health services that are trauma-informed, recovery-oriented and consistent with independent living philosophy.  …consumers …make their own decisions about treatment….  …will educate the NCIL membership and the IL community as a whole…  …will work with external groups to bring their expertise to the IL community.

23. NCIL MH Civil Rights Task Force  Task Force Membership  Must be individual NCIL member  Meetings  First Thursday at 3:00 Eastern teleconference  August 4 next meeting  “Mentally Healthy Independent Living” on Facebook

24. NCIL MH Civil Rights Task Force  Recent Activities  Temple University Collaborative on Community Inclusion for Individuals with Psychiatric Disabilities and their “CIL Fact Sheet”  ECT or “Electroshock”  “Mad Pride”

25. Presenters  Mike Bachhuber, Independent Living Council of Wisconsin mikeb@ilcw.org