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DD COC
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BLUEPRINT FOR EFFECTIVE TRANSITION
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SERVICES & HOUSING
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HISTORY OF MAINE'S ID/DD SYSTEM
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In late 2009 and 2010 the Maine Coalition for Housing and Quality Services initiated a parent-led project to redesign, from the ground up, a system of care for persons with developmental or intellectual disabilities. To learn more visit the DD Continuum of Care page!
In October of 2013 the Maine Coalition for Housing and Quality Services initiated a subcommittee to create a white paper on the topic of transition within the system of care for persons with developmental or intellectual disabilities. This began with a visual and conceptual diagram, evolved to a narrative, a structural design for implementation, and goals and action steps to achieve them. The Coalition completed the White Paper in February of 2015. To learn more visit the Blueprint for Effective Transition page!
Learn about the latest information on services and housing for people with ID/DD in Maine.
Relevant/applicable documents:
- Wuori v. Concannon (a.k.a. Pineland class action lawsuit) Docket, 7/3/1975
- Wuori v. Concannon Complaint, 7/3/1975
- Wuori v. Concannon Consent Judgement a.k.a. Pineland Consent Decree, 7/4/1980 - the entire Consent Decree including "Appendix A:" Pineland Center Standards, and "Appendix B:" Community Standards
- Wuori v. Concannon Memorandum of Opinion and Order of the Court, 8/6/1982
- "Appendix B: Community Standards," an appendix to the 1978 Pineland Consent Decree
- 1994 Community Consent Decree
- Final report of the Commission to Determine the Adequacy of Services to Persons with Mental Retardation, State of Maine 118th Legislature, 12/15/97
- 2010 court ruling that gave the State of Maine relief from judgement from the Community Consent Decree
From Whence We Came: A History of Services to People with Developmental Disabilities in Maine Charlene Kinnelly, Former Superintendent of Pineland 1978-80, social worker at Pineland beginning in 1966.
Prior to the 20th century - People with significant disabilities generally did not live past childhood. People with the mildest disabilities lived to adulthood and could help out on the family farm. People were cared for at home by their aunts, uncles, grandparents, etc.
1900 - 1920s - In 1908 legislation was enacted that called for the education of the feebleminded. It was based on the premise that your mind didn't work and you would always be a child. It was designed to protect the feebleminded from us because they were considered vulnerable. Pineland opened in 1908 with very few people. It provided education, work and protection for the population. In a working community males and females held stereotypical roles. In 1926 the title Chief Herdsman was used. People were put into one of three categories: Idiots (high functioning); Imbeciles (moderately functioning); Morons (low functioning). There was a growing belief that although Idiots were able to take care of themselves they were defective and dangerous and best served in large groups. Male Idiots were thought to be predisposed to violence and drunkenness and women idiots were predisposed to prostitution. The general belief was that they needed to be protected from themselves and that society needed to be protected from them. They needed to be watched. Until the latter part of the 20th century Pineland was the only place to get any kind of public service for a person with a Developmental Disability (DD).
1930s - In the late 1920s a growing eugenics movement led to change in societal perceptions: people with DD became objects of fear/menace. The role of institutions was to protect society. The Great Depression and World War II led to social and financial pressures causing families to have greater difficulty caring for members at home. The rich were able to care for their family members at home while the poor often were in the intuitions. Improvements in medicine (antiepileptic and antipsychotic drugs) meant less people died at a young age, which led to a larger population of people with significant impairments. With the development of antipsychotic and anticonvulsive medications there was a belief that anything could be cured with the right medication. Pineland population maxed in mid century which led to poor conditions. The treatment model transitioned to an educational model.
Now the three groups were called educables (high functioning), trainables (mid-functioning) and custodials (low functioning). The custodials were those with multiple challenges and more severe intellectual challenges you need custodial care.
1960s-1970s - Early parent advocacy (following path of civil rights) movement began. The first federal funding of DD services occurred in the Kennedy Administration. JFK had a family member with mental retardation and there was a growing belief that the federal government had an obligation to take care of its most vulnerable people. This was the time of the development of ADFC, SSDI, civil rights. The belief was that as an American you have certain rights. Families who didn't want their child institutionalized formed associations for retarded children (ARC), opened centers and schools, etc.
Deinstitutionalization begins, esp for custodials; institution was still seen as a place that education was provided).
1969: Maine Bureau of MR (but watch decrease in stature in state government over next 35 years)
1970s: Public education legislation, special ed.
1969 Bureau of Mental Retardation was formed as essentially a public guardian for someone who could not act on behalf of their child.
1974 All children have the right to education. Public schools had an obligation to all of its kids. There was a philosophical belief that if not institutionalized you would be cared for in community.
1975 Pineland suit filed.
1980s and 1990s There was a real push to de-institutionalize, public school became better for the population. First class of kids graduating from school into the community
2000 on DD population can live successfully in community inclusion is not questioned.
2009 Entitlements are limited to case management. There are 700 hundred members of the Pineland class. The State has petitioned to release all from the Community Consent Decree.
2010 - The State of Maine is released from the Community Consent Decree
Note: people serving in the legislature are of a similar age and remember this history. Remember who you are talking to if you work to garner their support. If you are 65 and never and haven't worked within the current system of care for people with developmental disabilities, odds are your philosophy is 20-30 years old.
For an updated version of this presentation, given at the November 9th, 2015 meeting please click here.
For more historical information please click here.
Related Documents:
Prior to the 20th century - People with significant disabilities generally did not live past childhood. People with the mildest disabilities lived to adulthood and could help out on the family farm. People were cared for at home by their aunts, uncles, grandparents, etc.
1900 - 1920s - In 1908 legislation was enacted that called for the education of the feebleminded. It was based on the premise that your mind didn't work and you would always be a child. It was designed to protect the feebleminded from us because they were considered vulnerable. Pineland opened in 1908 with very few people. It provided education, work and protection for the population. In a working community males and females held stereotypical roles. In 1926 the title Chief Herdsman was used. People were put into one of three categories: Idiots (high functioning); Imbeciles (moderately functioning); Morons (low functioning). There was a growing belief that although Idiots were able to take care of themselves they were defective and dangerous and best served in large groups. Male Idiots were thought to be predisposed to violence and drunkenness and women idiots were predisposed to prostitution. The general belief was that they needed to be protected from themselves and that society needed to be protected from them. They needed to be watched. Until the latter part of the 20th century Pineland was the only place to get any kind of public service for a person with a Developmental Disability (DD).
1930s - In the late 1920s a growing eugenics movement led to change in societal perceptions: people with DD became objects of fear/menace. The role of institutions was to protect society. The Great Depression and World War II led to social and financial pressures causing families to have greater difficulty caring for members at home. The rich were able to care for their family members at home while the poor often were in the intuitions. Improvements in medicine (antiepileptic and antipsychotic drugs) meant less people died at a young age, which led to a larger population of people with significant impairments. With the development of antipsychotic and anticonvulsive medications there was a belief that anything could be cured with the right medication. Pineland population maxed in mid century which led to poor conditions. The treatment model transitioned to an educational model.
Now the three groups were called educables (high functioning), trainables (mid-functioning) and custodials (low functioning). The custodials were those with multiple challenges and more severe intellectual challenges you need custodial care.
1960s-1970s - Early parent advocacy (following path of civil rights) movement began. The first federal funding of DD services occurred in the Kennedy Administration. JFK had a family member with mental retardation and there was a growing belief that the federal government had an obligation to take care of its most vulnerable people. This was the time of the development of ADFC, SSDI, civil rights. The belief was that as an American you have certain rights. Families who didn't want their child institutionalized formed associations for retarded children (ARC), opened centers and schools, etc.
Deinstitutionalization begins, esp for custodials; institution was still seen as a place that education was provided).
1969: Maine Bureau of MR (but watch decrease in stature in state government over next 35 years)
1970s: Public education legislation, special ed.
1969 Bureau of Mental Retardation was formed as essentially a public guardian for someone who could not act on behalf of their child.
1974 All children have the right to education. Public schools had an obligation to all of its kids. There was a philosophical belief that if not institutionalized you would be cared for in community.
1975 Pineland suit filed.
1980s and 1990s There was a real push to de-institutionalize, public school became better for the population. First class of kids graduating from school into the community
2000 on DD population can live successfully in community inclusion is not questioned.
2009 Entitlements are limited to case management. There are 700 hundred members of the Pineland class. The State has petitioned to release all from the Community Consent Decree.
2010 - The State of Maine is released from the Community Consent Decree
Note: people serving in the legislature are of a similar age and remember this history. Remember who you are talking to if you work to garner their support. If you are 65 and never and haven't worked within the current system of care for people with developmental disabilities, odds are your philosophy is 20-30 years old.
For an updated version of this presentation, given at the November 9th, 2015 meeting please click here.
For more historical information please click here.
Related Documents:
- Wuori v. Concannon (a.k.a. Pineland class action lawsuit) Docket, 7/3/1975
- Wuori v. Concannon Complaint, 7/3/1975
- Wuori v. Concannon Consent Judgement a.k.a. Pineland Consent Decree, 7/4/1980 - the entire Consent Decree including "Appendix A:" Pineland Center Standards, and "Appendix B:" Community Standards
- Wuori v. Concannon Memorandum of Opinion and Order of the Court, 8/6/1982
- "Appendix B: Community Standards," an appendix to the 1978 Pineland Consent Decree
- 1994 Community Consent Decree
- Final report of the Commission to Determine the Adequacy of Services to Persons with Mental Retardation, State of Maine 118th Legislature, 12/15/97
- 2010 court ruling that gave the State of Maine relief from judgement from the Community Consent Decree