SW 644: Issues in Developmental Disabilities Parent 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 blind 1850 – first state prison 1854 – mentally ill 1857 – delinquent boys 1895 – 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 illness Place children in foster homes Nothing 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  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  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 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.

Contact Information  Jim Hoegemeier The Arc-Wisconsin Disability Association