sw 644: issues in developmental disabilities parent advocacy, organizations, and new directions part...
TRANSCRIPT
SW 644: Issues in Developmental DisabilitiesParent Advocacy, Organizations, and New
Directions Part I
Lecture Presenter:
Jim Hoegemeier, Executive Director, The ARC-Wisconsin
Presentation Goals
Review History of Developmental Disability in Wisconsin
Determine Where We are Now Take a Guess as to Where Advocacy
is Going Determine Our Role(s) as Advocates
Disability Advocacy Beginnings
Began with the first humans. Developmental disabilities are a
natural part of the human existence. Parents and other family members
remain the primary advocates and have been so throughout history.
How Did it Begin in Wisconsin? Wisconsin Became a State in 1848 Much institutional building for many people
with disabilities:1850 – the blind1850 – first state prison1854 – mentally ill1857 – delinquent boys1895 – Establishment of the Wisconsin Home for the Feebleminded
Early Advocates
Parents A handful of legislators – Assembly
Committee on Charitable and Benevolent Institutions
Wisconsin Teachers Association State Board of Charities and Reform
(1871)
State Board of Charities and Reform
Surveyed local jails and poorhouses Appalled by conditions By 1880, 152 “mentally retarded” people
living in local poorhouses Recommendations:
Segregate people with mental illnessPlace children in foster homesNothing related to “mentally retarded” people
Alternatives to Poorhouses
County jails County insane asylums Family homes Efforts by Legislature to develop
institutions for developmentally disabled stall
Eugenic movement got legislation on track
Wisconsin Home for the Feebleminded
Legislation finally passed in 1895 Home founded for the “care, custody,
and training of the feebleminded, epileptic and idiotic of this state” under the supervision of the State Board of Control. Received an appropriation of $100,000. Home located in Chippewa Falls.
People admitted at no charge to them – county would pay half of the costs
Institutional Growth Southern Wisconsin Home for the
Feebleminded established in 1914 at Union Grove
Census at two homes rose from 394 in 1900 to 1060 in 1920
Marriage of “feebleminded” prohibited by Legislature
Legislature authorizes involuntary sterilizations
“Special” Education Milwaukee offered special education
classrooms for “mentally retarded” children in 1906.
Legislature approved special education provisions in 1917
In 1920, there were 21 classes for mentally retarded children in 10 cities
Goal was to keep “mentally retarded” children from general population and ease burdens on teachers of “regular” children
Changes in Institutions Move to place “trained and safe”
persons under lifelong supervision in the community – many released if they agreed to sterilization (by 1939, 991 colony residents, 86% of whom were women, were sterilized)
Change name to “Wisconsin Colony and Training School”
Development of “half-way” colonies
State Government Reorganization
Citizen committee criticized system and suggested that many “mentally retarded” people, if given early intervention and training, could lead useful and self-sufficient lives in the community
Governor LaFollette establishes Board of Mental Hygiene and Board of Corrections
Governor Heil establishes Department of Public Welfare with several divisions
Problems with Institutions and Special Education Positives
In the 1940s, the institutions were terribly overcrowded – 2,350 people in 1945.
Attendants overworked. Allegations of abuse, neglect and manslaughter
More special education programs develop including classes for older students with special needs
State picks up cost of transportation and room/Board
Expanding Institutions
In the 1940s and 1950s, institutional building increased – as did allegations of abuse and neglect. Media begins to expose conditions.
Central Colony established in 1953 in Madison
Colonies become training centers for UW Medical School
Parent Involvement Group of 5 sets of parents of children at
Southern Wisconsin Center Wanted to get more toys to the center Began support group Pushed for training and education in the Began The Wisconsin Council for Mentally
Retarded Children in 1949 in Milwaukee – quickly expanded to Madison and other cities.
Silent Progress President Kennedy stresses alternatives to
institutions Brown County received federal grant to
build a community-based service center for people with developmental disabilities
Many advocacy groups become involved in day services, sheltered workshops, etc.
Institutions still overused
Progress in the 1970s and 1980s
Community-based services explode Special education act in 1974 First group homes Respite care programs Incentives for employers of people
with developmental disabilities Community Options Program and
Community Integration Program established in early 1980s
Advocacy Now Many parent pioneers are passing away; Young parents think we always had the
services we had now; Push by government for community-based
services (primarily due to financial reasons);
People with disabilities have much longer life expectancy than in the past;
Changing Demographics
More people with disabilities living in community settings rather than institutional settings;
More older elderly people with disabilities;
Baby boomers include people with disabilities.
New Aging Challenges How do we care for people with
developmental disabilities that have Alzheimer’s, Parkinson’s, etc.?
How do we assist aging parents that provide care and support for an aging child with developmental disabilities?
How do we encourage siblings to become more involved with their brothers/sisters with developmental disabilities?
How do we encourage families to engage in planning (not just financial) for a member with special needs?
New Aging Challenges (cont.) Access to appropriate health care services
by experienced health care providers; Increased employment/volunteer
opportunities for people with disabilities; Emphasis on improving the lives of people
with disabilities because it is the right thing to do and NOT necessarily because it costs less.
What Can We Do? Talk to anyone and everyone about the
progress made in serving people with developmental disabilities;
Emphasize that we still have a long way to go in including people with disabilities in everyday life;
Join a group – any group. It could be The Arc, it could be an informal parents’ group. Remember, The Arc network in Wisconsin and all it has accomplished came about because 5 Milwaukee area couples got together to talk about their children at Southern Wisconsin Center.
What Can We Do? Remember that “we” includes people with
disabilities. We have become much stronger when we advocate with special needs people than when we just advocate for them.
Use technology. The internet and e-mail can help us stay connected with each other and have access to resources. More and more people with disabilities are online.
What Can We Do?
Vote! And remind people that how candidates stand on disability issues plays a large role in how you vote.
Don’t give up – keep pounding the drum.
Call advocacy groups and let them know your concerns, what you like, what you don’t like, etc.
