The Values that Drive IM4Q – Historical and Today

1. The Values that Drive IM4Q – Historical and Today IM4Q Annual Statewide Training Presented by: Bill Krebs and Guy Caruso

2. Values are Principles You: • Select • Freely • From Others • Act Upon • Repeatedly • Consistently - Rokeach, 1978

3. Values Exist at the Levels of: Civilization Culture Society Nation State County Provider Program Unit Shift Person Decisions are Values in Conflict

4. Disability Rights Movement • Struggle to gain full citizenship • Demand for equality, independence, autonomy, access to public life • Integration vs. “separate but equal” Source: American History Museum, Smithsonian Institution

5. In other words… • “No More Pity” • “Access not excuses” • “I’m not dead yet” • “I am not a case, and I don’t need to be managed”

6. Common Reactions to Disability • Assumptions about level of functioning • Focus on limitations • Fear • Ignore the person • Patronize • Pity

7. Knowledge is Needed Many Americans: • Are not aware of the amount of ongoing advocacy needed to ensure equal rights for people with disabilities. • Do not know what the history of disability has been internationally and nationally. Knowledge is Power

8. Historically… People with disabilities have been forced into dependency. Others speak for them, label them take care of them… often with the best intentions. Source: American History Museum, Smithsonian Institution

9. Subhuman creature or thing: animal, vegetable, object Menace: a threat to society Object of ridicule: to be laughed at and made fun of Object of pity: a victim Object of charity: a burden Holy innocent: child of God Patient: diseased, ill Eternal Child Commodity: $ can be made by serving the person Dying, already dead, close to dead Common Negative and Devalued Roles Assigned to People with Disabilities

10. Typical Life Experiencesof People with Disabilities Persons viewed by society as different: • Become devalued by society • Are put into devalued, negative social roles • Are rejected, segregated, and congregated • Are marked and labeled in negative ways • Are oppressed, punished and even physically hurt

11. New Understandings -Disability is part of the human experience. -Barriers are not created by disability, but by society’s response to it. -People with disabilities have a right to participate in all facets of life. -Society has a responsibility to remove the barriers that exclude them.

12. Parents Change Values of the Day • Questioning the statement:“Nothing can be done for your child.” • Belief that society has a responsibility to help people with disabilities have decent lives • Advocate for laws that improve education, rehabilitation and civil rights

13. Institutions = Time Bombs We let them grow and accepted their “rightness.”

14. De-institutionalization & Normalization Public exposure of inhumane conditions in institutions Families’ desire for children to live at home, attend school, and be part of the community Source: Disability History Museum

15. The Pennsylvania Mental Health/Mental Retardation (MH/MR) Act of 1967: The seeds of deinstitutionalization & normalization

16. Photographs from Blatt’s “Christmas in Purgatory”

18. Forces of Deinstitutionalization • President John F. Kennedy acknowledged his sister Rosemary and put money toward community services • Celebrities speak up – Roy & Dale Evans, Pearl Buck, 38th Vice President Hubert Humphrey • Exposes- Blatt’s, Geraldo Rivera (Willowbrook), PA ARC Pennhurst lawsuit • Parent Movement • Normalization/Valued Social Roles - Wolfensberger

19. Normalization-Valued Social Roles • 1970’s Wolfensberger Normalization led to deinstitutionalization and creation of community services (lead a life like everyone else) • 1990’s Normalization changed to Social Role Valorization (SRV) stating that valued roles are crucial to acceptance and a valued life (e.g. worker, artist, home owner)

20. L.C. & E.W. v. Olmstead • In 1999, two women with mental retardation, were voluntarily admitted to a psychiatric unit of a Georgia state hospital. • It was determined that the women were qualified to receive care in an appropriate community-based program, but the women were placed on a waiting list for the services and remained institutionalized. • The women filed suit against Georgia officials, alleging a violation of the Americans with Disabilities Act (ADA) for the state's failure to place them in a community-based program. • The U.S. Supreme Court ruled that states are required to provide community-based services for people with mental disabilities if treatment professionals determine that it is appropriate and the individuals do not object to such placement.

21. L.C. & E.W. v. Olmstead • The Court concluded that states are responsible for community-based placement if they have the available resources to provide community-based services. • The Court also required that states demonstrate that they have a comprehensive, effective working plan, including timetables and progress reports, for placing qualified people in less restrictive settings. States that maintain waiting lists must make a good faith effort to move people on the list to community programs at a reasonable pace.

22. Before the Olmstead Decision… • State hospitals and institutions house many individuals with developmental disabilities and mental health issues • The 90s brings the closing of many institutions as people move into communities of their choice

23. Brief History of How Human Services Have Served People with Disabilities

27. IM4Q Begins in 1999 – A Safeguard Driven by Families and People with Disabilities • The purpose of Pennsylvania’s IM4Q is to collect information about, as well as to improve the quality of life of people with intellectual disabilities who are served and supported within the ODP system • ODP’s vision is that everyone has the opportunity to live an everyday life • IM4Q was developed as the key data collection method to measure if a person has an everyday life

28. Focus of IM4Q Driven by Values Former Values Today’s Values Rights/Protection Valued Roles Citizen Independence & Interdependence Full Relationships (family/community) Integration/Inclusion Productivity/Action Many Choices/Maximum Control • Denial of Rights/Abuse • Devalued Roles • Labeled –Patient/Client • Dependence • Limited Relationships (staff/clients) • Segregation/Exclusion • Non-productivity/Idleness • Few Choices/Limited Control

29. REMEMBER!!!! Ed Roberts, the founder of the Independent Living Movement said: “Disability is an equal opportunity club and anyone of us can join on any given day.” When do you think you or a loved one will join?

30. Questions/Discussion Let’s Talk About the Values of IM4Q