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Home , Eunice Kennedy Shriver, Everyday life, Willowbrook State School

Advocacy for an Everyday Life

Presented by: KEPRO SW PA Health Care Quality Unit (KEPRO HCQU)

December 2017 eh

Disclaimer

Information or education provided by the HCQU is not intended to replace medical advice from the individual’s personal care physician, existing facility policy, or federal, state, and local regulations/codes within the agency jurisdiction. The information provided is not all inclusive of the topic presented.

Certificates for training hours will only be awarded to those attending the training in its entirety. Attendees are responsible for submitting paperwork to their respective agencies.

1 Objectives

• Discuss the importance of promoting equal treatment for people with intellectual and developmental disabilities (I/DD)

• State ways for caregivers to practice advocacy for persons with I/DD in all interactions

• Recall ways that caregivers can help an individual to make choices and enjoy an “Everyday Life”

What is Advocacy?

The act or process of supporting a cause; pleading in favor of something

(American Heritage Dictionary, 2011)

2 The Need for Advocacy for People with I/DD

• Historical treatment of people with I/DD

• Stigma associated with having a disability

• Disparities between people without disabilities and those with a disability

Results of Advocacy

• Protection of the individual’s civil and constitutional rights

• Improved services to meet individual preferences and desires

3 Results of Advocacy – continued

• Full access to and participation in community life

• Recognition of people with I/DD as valued and contributing members of society

Tools to Promote Advocacy

• Self‐Determination • Positive Approaches

• Everyday Lives • Laws

• People First Language • Education

4 Self‐Determination

• Freedom

• Authority

• Responsibility

• Support (Self‐Advocacy Association of NY State, n.d.)

Everyday Lives

• Choice • Freedom

• Control • Success

• Quality • Contributing to the Community • Stability • Accountability • Safety • Mentoring • Individuality • Collaboration • Relationships (PA Dept. of HS, Everyday Lives, 2016)

5 Everyday Lives: Choice

• “Nothing about me without me”

– Services received

– Who provides support

– Where to live and with whom

– Where to work

– Recreation and leisure

– Individualized day activities (PA Dept. of HS, Everyday Lives, 2016)

Everyday Lives: Control

• Relationships

• Budgets

• Medical Issues

• Planning

• Activities

6 Everyday Lives: Quality

• Quality of life improves when people have a voice

• Strive for quality in

– Supports and services provided

– Recognition of the person as an individual

– All daily interactions with that person

Everyday Lives: Stability and Safety

• Stability and safety lead to a sense of security

– Knowing that needs will be met

– Feeling safe at home, work, school and in the neighborhood

– Feeling secure that all changes are made with input and permission

7 Everyday Lives: Individuality

• Call a person by his or her name

• Offer activities based on likes and interests

• Allow privacy and freedom of choice

• Allow the individual to do things his or her way, within safe measures

Everyday Lives: Relationships

• People need people

– Family

– Partner

– Friends

– Neighbors

– Community

8 Everyday Lives: Success

• Freedom from poverty

• Living independently with support

• Being healthy

• Having friends

• Doing something meaningful

Everyday Lives: Contributing to the Community

• Voting

• Obtaining gainful employment

• Volunteering

• Leisure and recreational activities

• Attending religious services of choice

• Neighborhood activities

9 Everyday Lives: Accountability

• Government

• Agencies

• Support People

Everyday Lives: Mentoring

• Helping others know what to do

– Individuals and families

– Supports coordinators

– Senior support staff

– Community

10 Everyday Lives: Collaboration

• Working together for the person’s best interest

– Between all support service providers

– Between the Office of Developmental Programs (ODP) and other offices within the Department of Public Welfare

People First Language

Say… Instead of…

People with disabilities The handicapped

He has Down Syndrome He’s Down’s

Accessible parking Handicapped parking She’s confined to a She uses a wheelchair wheelchair Communicates with a device Talks through a box

(Kathie Snow, Disability is Natural, 2001)

11 Positive Approaches

• A way of thinking about people and interacting with them

• Supports people to grow and develop

• Shifts the focus from control over the person to collaboration with the person.

(Positive Practices/Approaches, PA ODP, 2016)

Laws

• American Disability Act of 1990

• Protect civil and constitutional rights

• PA Disability Law Project

• PA Disabilities Rights Network

12 Education

• Calms fears

• Corrects misconceptions

• Empowers people to be advocates

EVERYDAY LIVES ARE FOR EVERYONE

13 Using the Tools of Advocacy in Your Daily Work

• Lead by example

• Practice patience

Using the Tools of Advocacy in Your Daily Work ‐ continued

• Explore laws and policies and knows the channels to seek justice

• Promote inclusion of people with developmental disabilities

14 Using the Tools of Advocacy in Your Daily Work ‐ continued

• Focus on abilities, not disabilities

• Work to remove barriers

Using the Tools of Advocacy in Your Daily Work ‐ continued

• Challenge assumptions

• Encourage self‐advocacy

15 Living vs. Existing

• Getting a birthday card in the mail

• Choosing a job and feeling like a productive member of society

• Holding hands with someone special

• Having someone tell you they love you

• Being able to take part in a relationship with someone of your own choice

• Choosing how to spend time

Be an Advocate

• Work to provide a good quality of life

• Allow individuals to choose for themselves

• Assist with community integration

• Model appropriate behavior

16 Related Training Topics

• Behavior is Communication

• Positive Approaches

References

• American Association on Intellectual and Developmental Disabilities (aaidd). (n.d.). Definition of Intellectual Disability. Retrieved November 30, 2017, from http://www.aamr.org/About_AAIDD/MR_name_change.htm • American Association on Intellectual and Developmental Disabilities (aaidd). (2015, December). Issue Brief: Self‐Determination and Self‐ Advocacy by People with IDD. Retrieved November 30, 2017, from http://aaidd.org/docs/default‐source/National‐Goals/self‐determination‐ and‐self‐advocacy‐by‐people‐with‐idd.pdf?sfvrsn=0 • American Heritage® Dictionary of the English Language, Fifth Edition by Houghton Mifflin Harcourt Publishing Company. (2011). Advocacy. Published by Houghton Mifflin Harcourt Publishing Company. Retrieved November 30, 2017, from http://www.thefreedictionary.com/advocacy • Disability Advocacy. (2015). Individual Advocacy. Retrieved November 30, 2017, from http://da.org.au/advocacy/individual‐advocacy/

17 References

• Disability is Natural. (2001) People First Language Articles. Kathie Snow. Retrieved November 30, 2017, from https://www.disabilityisnatural.com/pfl‐articles.html • Disability Rights Washington. (2012, June) What is Advocacy? Retrieved November 30, 2017, from http://www.disabilityrightswa.org/what‐ advocacy • Legal Information Institute (LII) –Cornell University Law School. (n.d.). Civil Rights. Retrieved November 30, 2017, from https://www.law.cornell.edu/wex/civil_rights • Pennsylvania Department of Human Services. (2016). Everyday Lives. Retrieved November 30, 2017, from http://www.dhs.pa.gov/publications/EverydayLives/ • Pennsylvania Department of Human Services. (n.d.) Intellectual Disabilities Services. Retrieved November 30, 2017, from http://www.dhs.pa.gov/citizens/intellectualdisabilitiesservices/index.htm #.VyoTck_ruM9

References

• Public Broadcasting System (PBS). (2009, October). Body & Soul: Diana & Kathy. Retrieved on November 30, 2017, from http://www.pbs.org/programs/body‐and‐soul/ • Searle, J. (n.d.) My Life –My Story. Retrieved November 30, 2017, from http://slideplayer.com/slide/8600573/ • Self‐Advocacy Association of New York State. (n.d.) Principles of Self‐ Determination from the Robert Wood Johnson Foundation’s National Program Self‐Determination for Persons with Developmental Disabilities. Retrieved November 30, 2017, from http://www.sanys.org/determination/deter_2.htm • The Center for Self‐Determination. (2012). Principles of Self‐ Determination. Retrieved November 30, 2017, from http://www.centerforself‐determination.com/

18 To register for future trainings or for more information on this or any other physical or behavioral health topic, please visit hcqu.kepro.com

Test and Evaluation

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Thank you!

Treatment of People with Disabilities: An Historical Perspective Throughout history society has held differing views regarding people with disabilities. It is important to understand the past in order to improve the future. Historical societal views of those with mental retardation include the following:

Antiquity Period: Renaissance Period: Charitable Obligation vs. Biological Causes vs. Superstition Punishment by God By the 1500’s, there were advances in studies During this period, society felt an obligation to those surrounding how the human body functions. with a disability, but they also believed that the Despite these advances, the belief in the possession child’s disability was a punishment from a higher or bestial nature of people with mental disabilities power. In records dating back to 2000 BC, births of persisted, which may have been a direct result of children with congenital deformities were noted to the teachings of religious leaders of the time. hold prophetic meaning. The manifestation of a Individuals suffering from depression, paralysis and disability was a portent of things to come in the intellectual disabilities would undergo voluntary community. beatings to the head as a form of treatment.

Middle Ages: Physicians of the day would bore holes into the head Demonization vs. Sympathy to release the “stones” or “black bile” that was By the sixth century institutions were organized as thought to have caused the illness. While these refuges to people with blindness, leprosy and treatments seem radical, they focused on biological mental disabilities. However, intellectual disability, causes, indicating a shift from the belief that mental mental illness, and epilepsy were thought to have retardation was caused by the supernatural. supernatural or demonic causes. This led to the attempts to cure mental illness through exorcism, Age of Reason: an act that contributed to the persecution of people Advances in the Natural Sciences with mental illness as witches. Attempts were made The “Era of Enlightenment” and “The Age of to “cure” them by using magic. Reason” are terms used for a time period beginning in the 17th century. This period represents the rise Despite widespread superstitions such as these, of contemporary thinking. There were changes in other attitudes did exist. This is evidenced by the attitudes, formation of interest groups, the fact there is an absence of mention of organization of new institutions, and the formation demonological causes to mental disabilities in of voluntary charitable societies. medical texts of the time. There are writings that indicate there were advocates for the natural cause of disease and that towns assumed responsibility for people with mental disease. Some towns funded pilgrimages to religious sites to seek cures for people with epilepsy and mental illness. So in a time occasioned by plagues, malnutrition and infectious disease, people with disabilities were accepted as part of the natural order of things. Colonial America: disabilities as a way of delivering them from their Distinction between Mental Illness and disabilities. At this time, compulsory sterilization Intellectual Disability was deemed necessary for all “criminals, idiots, imbeciles and rapists”. The terms “idiot” and A distinction was made between mental illness and “imbecile” were medical terms used to differentiate intellectual disability during this period. Those who between the different degrees of mental were poor and/or disabled were housed in asylums, retardation. Additionally, due to the lack of madhouses or work houses. These institutions advocacy for those with mental retardation, they th became more and more common as the 19 were often the subjects of various medical century began. For the first time, disability was seen experiments without their consent. Thankfully, as something not just part of the natural order, but evidence began to emerge that these individuals instead, felt to be something that could be were not deviant, and studies demonstrated that corrected. This brought about treatment with family support, they could function in the interventions for all people with disabilities community. including the blind, deaf and mentally and intellectually disabled. This treatment occurred primarily in the institutional setting. This trend 1950’s and 1960s America: toward institutionalization would continue and gain Introduction of Medication and Beginning greater momentum during the 19th and 20th of Deinstitutionalization centuries. Beginning in the 1950’s parents and advocates of people with disabilities began organizing for more America in the 19th Century: services and better treatment for them. Local groups of parents joined forces and formed a group Institutional Segregation and the Beginning called the National Association for Retarded of Advocacy Children (now the ARC). These families organized to During this period, conditions in the institutions advocate for services for their children, including were terrible. They were severely overcrowded, better conditions in institutions and the making attempts at moral treatment difficult, if not development of schools and workshops. They impossible. Treatment gave way to confinement, advocated on the local, state and national levels. and as cure rates dropped, physicians reported that The introduction of anti‐psychotic drugs along with mental illness was incurable. the commitment to the community treatment approach resulted in a rapid decline in the Dorothea Dix, a nurse, was one of the first advocates institutional population. President Kennedy made for those who were institutionalized. She traveled social reform for institutionalized individuals one of across the county and inspected living conditions of his campaign issues, and money started to be people with disabilities who were institutionalized. available to change the lives of people with mental She found people living in cages, pens and stalls who retardation. were naked, beaten, covered in filth and tearing off their own skin. 1970s and Beyond: Working for the Rights

of Individuals with Disabilities th America in the 20 Century: The past three decades have shown profound Widespread Institutionalization and changes in the attitudes toward people with Disregard for Rights developmental disabilities. Society’s view that From 1880‐1925, people with mental retardation these individuals represent a burden and that they were seen as a menace to society, and it was felt require segregation and medical treatment is now that their disabilities degraded society. “Mercy” replaced by the view that people with killings were done to those with mental and physical developmental disabilities are entitled to all the 2

rights and respect afforded to all citizens. Similarly, 1980s to Present: the landscape of residential services for persons Empowering People with Disabilities with developmental disabilities has also changed. Over the last 20 years concepts such as Everyday Community‐based residential programs and Lives and Positive Approaches have been the basis supports have increasingly replaced public for supporting people with mental retardation and institutions, which had been the mainstay of the developmental disabilities. These concepts state service system since the 1800’s. recognize that the person has choices—choices about where to live and with whom, and what These changes could not have been possible programs to participate in, for example. without legislation regarding the rights of people with mental retardation. There have been greater Everyday Lives first became the framework for the than 70 class action lawsuits demanding mental retardation system in the early 1990s. Ten institutional reform or closure. Some of these laws years later it was reported that progress in helping include: people with disabilities to live every day, ordinary

– Rehabilitation Act of 1973 lives had been made. This concept is based on self‐ This act prohibits discrimination on the basis of a determination, which refers to people making their disability. own decisions about their lives, and self‐ determination actually applies to all groups of – Education for All Handicapped Children Act of people, not just those with MR/DD. 1975 This mandated that public schools must provide free Positive Approaches refers to a way to interact with and appropriate education, each student must individuals that is a worldview of holistically looking have an Individualized Education Plan (IEP), and at a person to help him live an everyday life, or the where possible, children with disabilities are life that he wants to live. It has 4 cornerstones: integrated into mainstream classrooms. environment, community, clinical, and hanging in there. This approach preserves the dignity of the – Omnibus Budget Reconciliation Act (OBRA) of person and respects the person. 1987 This is to prevent those with MR being placed into a Because of the efforts of the last 20 years, people nursing home if they do not need 24‐hour with disabilities can now have lives that are very nursing care. This also encouraged the discharge of similar to the lives of the general population. anyone with MR in a nursing home that did not Individuals now have more control over their lives, need 24‐hour nursing care. and they have the opportunity to make choices for themselves. Even individuals that need the highest – Medicaid Home and Community Based Waiver level of support now have a voice. Program This began in 1981 and allowed optional funding for individual services to be completed through this program.

Sources:  Smithsonian National Museum of American History, Kenneth E. Behring Center. (n.d). EveryBody: An Artifact History of Disability in American. Retrieved November 30, 2017, from https://everybody.si.edu/  Dybwad, G. (1960). Mental Retardation. Disability History Museum – Library. Retrieved November 30, 2017, from http://www.disabilitymuseum.org/dhm/lib/detail.html?id=2236 QR‐11.17/ eh 3

ADVOCACY HISTORY

1898 Eugenic sterilization bill introduced Michigan state legislature, to authorize castration of all inmates of Michigan Home for the Feeble Minded and Epileptic and felons convicted of third offense.

1898 Helen Brooke Taussig, deaf, dyslexia, tuberculosis; pediatric cardiologist. Born Cambridge, Massachusetts. Treated "blue babies," children born with heart condition affecting lung

1900 Marriage prohibited for alcoholics, "the insane," and people with tuberculosis by State of North Dakota.

1901 Pennsylvania sterilization law passed by legislature, but vetoed by governor. Nonetheless, Superintendent Martin Barr continues to sterilize inmates of Elwyn.

1907 Indiana compulsory sterilization law, first state law mandating sterilization of "idiots," "imbeciles," convicted criminals, and rapists. Over next decade, fifteen states adopt similar laws. Over next two decades, twenty one states implement eugenic sterilization statutes. Some 8,500 individuals will be sterilized, 465 in Indiana State Reformatory.

1911 Sterilization of certain types of "feeble‐minded" adults mandated by New Jersey state legislature.

1913 Sterilization of "mental defectives" authorized by Wisconsin State Legislature.

1915 Dr. Harry Haiselden kills disabled newborn "Baby Bollinger" at Chicago's German‐American Hospital, November 12; then actively courts nationwide publicity to advocate euthanasia of newborns with disabilities

1927 Buck v. Bell, U.S. Supreme Court upholds Virginia's sterilization statute, ruling that compulsory sterilization of people with disabilities does not violate their constitutional rights. Writing for the majority, Justice Oliver Wendell Holmes declares: "We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often felt to be much by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. . . ." During the next half‐century, more than 60,000 Americans with disabilities will be sterilized without their consent. The high court never reverses this ruling.

1927 Indiana legislature adopts a second sterilization law.

1931 Sterilization statues have been enacted in 27 U.S. states

1932 Franklin D. Roosevelt elected president of the United States.

1935 Social Security Act, passed by U.S. Congress August 1935, includes provisions for federal financial assistance to state governments to support Aid to the Blind and medical rehabilitation of physically disabled children. Also expands federal support of state vocational rehabilitation programs

1938 Sheltered workshops vastly increase in number following passage of Fair Labor Standards Act. Ostensibly job training and employment programs for blind and visually disabled workers, sheltered workshops are actually authorized by this law to pay such workers sub‐minimum wages in substandard work environments.

1940 National Federation of the Blind founded at meeting of blind advocates in Wilkes‐Barre, Pennsylvania.. Calls for dog guide and "white cane laws," the first access and accommodations statutes

1946 Cerebral Palsy Society of New York City established by parent advocates. Will expand to national organization, United Cerebral Palsy Associations.

1947 Presidents Committee on National Employ the Physically Handicapped Week convenes first meeting in Washington, D.C. Through state and local committees, its ongoing public relations effort will utilize motion picture theater trailers, radio and TV public‐service announcements, and billboards to persuade employers and the general public of the competency of people with disabilities and that its “good business to hire the handicapped.”

1947 Sterilization policies in 27 U.S. states have resulted in compulsory sterilization of 6,212 Americans with disabilities

1949 National Foundation for Cerebral Palsy founded by representatives of parents groups. Renamed United Cerebral Palsy Associations, Inc., in 1950. Along with Association for Retarded Children, becomes major component of a post‐World War II parents’ movement advocating for the rights of people with disabilities

1950 Barrier‐free movement launched by disabled World War II veterans, other people with disabilities, and disability advocates. Over the next two decades, this campaign, working with the National Easter Seals Society, the President’s Committee on Employment of the Handicapped, the Veterans Administration, and other entities, fashions national standards for “barrier‐free” buildings and promotes their implementation in federal and state laws.

1953 Medical experiments on teenage boys with mental retardation. Clemens Benda, clinical director of the Fernald School in Waltham, Massachusetts, starts a “science club” for male teenage inmates. He tells 100 of them that they will enjoy special outings and extra snacks. Seeking their parents’ consent, he tells the parents that blood samples will be taken after the boys eat “a special breakfast meal containing a certain amount of calcium.” He hides that the oatmeal contains radioactive substances. In 1997, the Massachusetts Institute of Technology and the Quaker Oats Company, which conducted the experiments, agree to pay the surviving uninformed subjects $1.85 million.

1960 Deinstitutionalization campaign for people with developmental disabilities begins. Seeks to move individuals from large institutions the small group homes with community‐based services. But such services never receive full or adequate funding. (1960s)

1961 President’s Panel on Mental Retardation appointed by President John F. Kennedy to look into the situation of Americans with cognitive developmental disabilities and propose reforms in policies and programs affecting them.

1963 Deinstitutionalization and community services for people with mental disabilities. President John F. Kennedy calls on Congress for legislation to reduce, “over a number of years and by hundreds of thousands, [the number] of persons confined” to custodial institutions. He proposes the creation of ways “to retain in and return to the community the mentally ill and mentally retarded, and there to restore and revitalize their lives through better health programs and strengthened educational and rehabilitation services.”

1965 Autism Society of America established by parents of children with autism to address lack of services, prevalence of discrimination, and the dominant medical perspective attributing autism to poor parenting rather than neurological basis.

1968 Special Olympics, founded by Eunice Kennedy Shriver as athletic training and participation program for people with cognitive and developmental disabilities, holds first in games at Soldier Field in Chicago, Illinois. Will become international program involving over a million children, teenagers, and adults in 23 sports events.

1969 Access symbol, the line drawing of a wheelchair rider which will become the ubiquitous sign of physical accessibility, introduced at Rehabilitation International World Congress

1970 Developmental Disabilities Services and Facilities Construction Amendments adopted by U. S. Congress. Establish first legal definition of developmental disabilities. Authorize grants for services and facilities to rehabilitate people with developmental disabilities. Authorized creation of state “Developmental Disabilities Councils

1970 Judith Heumann: In May, New York City Public School system refuses teaching license to Judy Heumann, a wheelchair rider. Even though the Board of Examiners regards her as physically fit, they fear that her use of a wheelchair will endanger schoolchildren in an emergency. Heumann sues the school district in federal court, charging job discrimination. Soon after she co‐founds Disabled in Action of New York, a disability rights activist organization. (See entry above). Drawing extensive news media coverage, she wins the lawsuit and receives a teaching license. The Board of Education opens teaching positions to people with physical disabilities. (Judith is now Assistant Secretary for Special Education and Rehabilitative Services (OSERS) since June 1993)

1971 Fair Labor Standard Act of 1938 amended to place people with disabilities other than blindness in sheltered workshops. As a result, the sheltered workshop system absorbs large numbers of people with cognitive and developmental disabilities and vastly expands.

1972 Center for Independent Living (CIL) established in Berkeley, California. Usually considered first independent living center anywhere. Non‐residential agency directed by people with disabilities, provides information and advocacy to support disabled people to live in their own households in the community. Funded by a $50,000 grant from the federal Rehabilitation Services Administration.

1972 Mills v. Board of Education: U.S. District Court for the District of Columbia orders that District of Columbia may not bar children with disabilities from public schools. Rules that school boards have legal and constitutional duty to afford all children, whatever their form of disability, a free public education. 1972 Pennsylvania Association of Retarded Children (PARC) v. State of Pennsylvania: U.S. District Court for the Eastern District of Pennsylvania declares unconstitutional various state laws barring children with disabilities from public schools. Decision prompts activists to file many other right‐to‐education lawsuits. During 1970s they will look to the courts to advance disability rights. Advocates refer to this ruling during the congressional hearings regarding Education for All Handicapped Children Act of 1975.

1972 Virginia state government ends sterilization program. 8300 individuals will never be compensated for being sterilized.

1972 Willowbrook State School: Parents of inmates in Staten Island, New York, institution sue New York Governor Nelson Rockefeller (New York ARC v. Rockefeller) to correct abusive conditions. TV exposé by reporter Geraldo Rivera provokes public outcry. Press coverage, parent advocacy, and the lawsuit eventually result in transfer of large numbers of people with developmental disabilities from Willowbrook into community‐based living arrangements.

1973 Bill of Rights for the Handicapped adapted at United Cerebral Palsy Association annual meeting in Washington, D.C.

1974 People First, self‐advocacy organization of people with cognitive/developmental disabilities, holds first convention in Salem, Oregon.

1975 The Association of Persons with Severe Handicaps (TASH) founded by special educators in response to PARC v. Pennsylvania (1972) and other right‐to‐education rulings. It will later oppose aversive behavior modification and demand closing of all residential institutions

1975 Education for All Handicapped Children Act (Pub. Law 94‐142) adopted by U. S. Congress. Later renamed Individuals with Disabilities Education Act (IDEA). For first time, ensures right of children with disabilities to receive public school education in settings as integrated as possible (the “least restrictive environment”) and mandates for each such child an “individualized educational program.”

1975 Edward Roberts appointed Director of California Department of Rehabilitation. He oversees an establishment of nine independent living centers in that state, patterned after the Center for Independent Living he co‐founded in Berkeley in 1972. These centers become models for hundreds of independent living centers across the globe

1976 United Cerebral Palsy telethon picketed by Disabled in Action of New York. Condemns such fund‐raising broadcasts as “demeaning and paternalistic shows which celebrate and encourage pity.”

1977 Halderman v. Pennhurst: lawsuit against Pennsylvania’s Pennhurst State School and Hospital that demands correction of harsh conditions at state “schools” for people with mental retardation. Pennsylvania state court rules against “separate but equal” educational programs and institutions for children with disabilities, declaring they violate constitutional guarantees of equal protection under the law. The ruling in favor of the inmates establishes the right to services in the community for people with developmental disabilities and becomes a significant judicial precedent in the struggle battle for deinstitutionalization

1982 Baby Doe” case: Doctors in Bloomington, Indiana, advise parents of newborn with blockage of esophagus to reject life‐saving surgery because infant has Down Syndrome. Activists try to intervene, but child starves to death. Disability rights and right to life advocates persuade Reagan Administration to issue regulations to protect disabled newborns from life‐threatening medical discrimination.

1982 Justin Dart holds public hearings on disability discrimination in every state October 1982‐August 1983 to gather data for planned National Council on Handicapped report.

1982 Telecommunications for the Disabled Act passed by U. S. Congress. Requires telephone access for deaf and hard‐ of‐hearing people in important public locations, such as hospitals and police stations. Requires that by January 1985 all coin‐operated public telephones be hearing aid‐compatible. Requires that workplace and emergency telephones be hearing aid‐compatible. Calls upon state governments to subsidize manufacture and distribution of TDDs (Telecommunications Devices for the Deaf, more commonly known as TTYs).

1984 Baby Jane Doe case, like 1982 Bloomington Baby Doe case, involves disabled infant denied life‐sustaining medical treatment because of her disability. Leads to U. S. Supreme Court case Bowen v. American Hospital Association and passage by U. S. Congress of Child Abuse Prevention and Treatment Act Amendments of 1984.

1990 Americans with Disabilities Act signed into law by President George H. W. Bush on July 26. Prohibits discrimination services and employment and requires “reasonable accommodations” or “reasonable modifications” to guarantee access to people with disabilities in federal, state, and local government facilities and programs, most private businesses, public transportation, telecommunications, and other public spheres of American society.

1990 Jack Kevorkian assists suicide of Janet Adkins, woman in early stage multiple sclerosis. Vast majority of suicides he abets will be women with disabilities.

1990 Wheelchair lifts required on public transit buses in regulations finally issued by U. S. Secretary of Transportation Samuel Skinner.

1991 Muscular Dystrophy Association Telethon protested in eight cities by “Jerry’s Orphans.” September

1992 Muscular Dystrophy Association telethon protested in twenty U. S. cities. September.

1995 American Association of People with Disabilities founded in Washington, D.C.

1995 Sandra Jensen, California woman with Down syndrome and member of self advocacy organization People First, denied heart‐lung transplant by Stanford University Medical School because of her disability. When disability rights activists protest, hospital administrators authorize the operation. In January 1996, Jensen becomes the first person with Down Syndrome to receive heart‐lung transplant.

1995 Christopher Reeve sustains high level spinal cord injury in horse‐riding competition. Becomes controversial spokesperson for cure research in opposition to accessibility and civil rights. In 2004, the medical treatments supposedly designed to improve his chances for cure cause his death.

1996 Telecommunications Act of 1996 passed by U.S. Congress. Requires that telecommunications services and equipment be accessible.

1990 Olmstead v. L.C. and E.W.: U. S. Supreme Court rules that State of Georgia violates Americans with Disabilities Act by compelling individuals with disabilities to reside in institutions without offering alternative option of community‐based living arrangements. Orders that state must offer services in most integrated setting

2001 Virginia House of Delegates passes resolution expressing regret for Commonwealth’s eugenic sterilization program from 1924 to 1979.

Adapted from: PA Department of Human Services. (2016). Everyday Lives. Retrieved from https://s3‐us‐west‐2.amazonaws.com/palms‐ awss3‐repository/MyODP_Content/Everyday+Lives/EDL+booklet+proof+11‐1‐2016.pdf

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Core Values of Everyday Lives

Choice: Having the power to make decisions in all areas of life

Control: Having the power or authority to influence and direct decisions in all aspects of the person’s life

Quality: Having a life encompassing all core values of Everyday lives so that the person has the life they choose.

Community Inclusion: Opportunities to participate in their community and pursue interests and relationships that the person chooses.

Stability Changes in life are only made with the person’s input and permission

Accountability: Being held responsible for carrying out one’s obligations, and responsibilities: People doing what they are assigned to do.

Safety: Ensuring freedom from harm or danger in the person’s everyday life, without being over protective or restricting the person’s supports/services

Individuality: The distinguishing character or qualities that make the person unique from everyone else.

Relationships: A connection to community, a sense of belonging to family, and close associations with friends

Freedom: Having the liberty to do, say or think what one pleases without being under another’s control

Success: Accomplishing or gaining something desired, intended or attempted that brings fulfillment and happiness to the person.

Contributing to the Community: A sense of Fellowship, social connection, participation, sharing something in common with other people in the same town, area, etc

Collaboration: All people/community/services/systems, etc, involved in the person’s everyday life are communicating, cooperating, aiding each other and working together to create a seamless system that bridges from education to adult services in the person’s life.

Communication: Exchanging desires, wants, needs, feelings, ideas, messages or information through gestures, sounds words spoken, oral written, sign or technologically enhanced language. This language is both expressive (making thoughts known) or receptive (understanding what others are saying)

Positive Approachespurpose is to support people to grow and develop, to make their own decisions, to achieve their personal goals, to develop relationships, and to enjoy life as afull, participating member of their community. (OMR Bulletin 00-91-05)

Po.vffiVQAppto~chQ.v in Pennsylvania is a way of thinking and acting that brings the Everyday Lives philosophy to reality for individuals with challenging behaviors. It guides services and supports based on the belief that everyone (with or without a disability) wants an "everyday life," a life that includes choice, control, relationships, and community. To support people with challenging behaviors, four major areasneed to be addressed:environment, communication, assessment,and a commitment to "hanging in there." Additional fact sheetsaddress these four areas. Positive Approaches is a paradigm, a way of living and a way of supporting individuals who receive supports from the mental retardation system. Customizing supports and using community or generic supports, based on the individual preferences and needs of eachperson, is a vital part of Positive Approaches.

~ GROW AND DEVELqP ...Everyone (with or without a disability) has the ability and potential ! to learn and increase their skills.

.MAKE THEIR OWN qECISIONS Everyone (with or without a disability) has the ability to makechoices that affect their lives.

.ACHIEVE THEIR PERSONAL GOA4S ...Everyone (with or without a disability) has certain things that they want to iaccomplish in dteir lives.

.DEVELOP RELATIO~SHIPS ...Everyone (with or without a disability) wants to feel that they belong, that their preserlceis valued by others, and that they are and can be loved.

~ ENJOY LIFE AS FULL, PARTICIPATJNG MEMBERS OF THEIR COMMUNITY. .. , Everyone (with or without a disability)lis welcomed ~nd their community values their participation and contribution. 0 Departmentof Public Welfare Office of Mental Retardation People with disabilities have identified specific elements, displayed in the graphic of Everyday Lives, that they want in their lives. These same elements are generally expected by those without a disability. Positive Approaches requires the ongoing effort of the entire support team to establish and ensure the likelihood that people with disabilities will achieve an "everyday life." This is no easytask. The team must attempt to look through the eyes and experiencesof the individuals they support and listen to what they have to say. .Listen to their words .Look at their actions .Pay attention to their reactions .Attempt to identify what might be missing from their lives. Positive Approaches requires continually exploring, educating, and advocating for creative and innova- tive ways to help individuals acquire the same elements in their lives that individuals without disabilities expect in their lives. Positive Approaches helps them to regain or establish their own "everyday life."

The applications of Positive Approaches are as varied and individual as the people being supported. There are countless articles and stories describing unique solutions that have significantly influenced the quality of life of others. Some of those stories can be found in The Pennsylvania Journal on Positive Approaches. There are also numerous tools available in Pennsylvania that support the practices of Positive Approaches. Some examples are person centeredplanning tools such as: .Essential Lifestyles Planning I .Personal Futures Planning .Making Action Plans (MAP) .Biographical Timeline .Planning Alternative Tomorrow's with Hope (PATH) These tools can be used to gather meaningful information to guide Positive Approaches and Pennsylvania's Individual Support Plan (ISP)o!

For more information on Positive Approaches, contact your County MH/MR Office or Jeannie Goryl at the OMR Consulting System, 800-360-7282 ext. 3715. For subscription information to The Pennsylvania Journal on Positive Approaches, contact Contract Consultants, 608 Market Street, New Cumberland, PA 17070, or call 800-459-1838.