The Values that Drive IM4Q – Historical and Today

IM4Q Annual Statewide TrainingPresented by:

Bill Krebs and Guy Caruso

Values are Principles You:

• Select• Freely• From Others• Act Upon• Repeatedly• Consistently

- Rokeach, 1978

Values Exist at the Levels of:

Decisions are Values in Conflict

CivilizationCultureSocietyNationState

CountyProviderProgram

Unit Shift

Person

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

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”

Common Reactions to Disability

• Assumptions about level of functioning • Focus on limitations• Fear• Ignore the person• Patronize• Pity

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

Historically…

People with disabilities have been forced into dependency.

Others speak for them, label themtake care of them…

often with the best intentions.

Source: American History Museum, Smithsonian Institution

Common Negative and Devalued Roles Assigned to People with Disabilities

• 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

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

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.

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

Institutions = Time Bombs

We let them grow and accepted their “rightness.”

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

ThePennsylvania

Mental Health/Mental

Retardation (MH/MR) Act of

1967:

The seeds of deinstitutionalization

& normalization

Photographs from Blatt’s “Christmas in Purgatory”

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

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)

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.

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.

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

Brief History of How Human Services Have Served People with Disabilities

Time Period Values Treatment

Ancient Greece Fitness/Wholeness Left to Die

Medieval Period Rationality Put to Death

Early Colonial Appropriateness Put to Death

Age of Reason Education/Learning Taught

1850’s Education/Learning(Correct Deviancy)

Small Residential Schools

Time Period Values Treatment

1848 Dix’s – Isolated land for the “Wards of the Nation”

1859 Darwin’s – Origin of the Species

1869 Galton’s – Eugenics Movement

1870’s Protection/Asylum/Shelter/Child Role

Isolated/Segregated Havens

1880’s Pity/Charity Protected/Bare Essentials

Alarm Period(1910-1920)

Menace/Dangerous Castrated/Isolated/Segregated & Persecuted

1916/Binet IQ/Labeling/Standardization

Segregated & Congregated

Time Period Values Treatment

1930-1960 Do not belong, sick, defective, unfit and

unproductive

Patients/Out of sight & mind, less than

1940’s Germany Not Human/Unfit

Holocaust/Death

1950-1970 Subhuman Institutions like worst prison

1950’s Parent Control/Reform/Change

ARC & UCP developed

1960’s Awareness(President JFK)

$$ for Change

Time Period Values Treatment

1970’s• Normalization (Rights & Presence) (Outrage/Legal Action• Control by Person, Demedicalization

• Deinstitutionalization & Integration• Centers for Independent Living

1980’s – 1990’s • Integration• Social Role Valorization• Self-advocacy/• System Change

• Community Living/Clients• Valued Roles• Voices heard/ADAPT

1990’s – Today • Self-determination• Person-centered• Inclusion• Relationships

• Drives Action• Individualized• Part of Community• Friends

Beyond Tomorrow ????

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

Focus of IM4Q Driven by Values

Former Values• Denial of Rights/Abuse• Devalued Roles• Labeled –Patient/Client• Dependence• Limited Relationships

(staff/clients)• Segregation/Exclusion• Non-productivity/Idleness• Few Choices/Limited Control

Today’s Values• Rights/Protection• Valued Roles• Citizen• Independence &

Interdependence• Full Relationships

(family/community)• Integration/Inclusion• Productivity/Action• Many Choices/Maximum

Control

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?

Questions/Discussion

Let’s Talk About the Values of IM4Q