The Self Advocacy Movement in the United States

Presenters Tia Nelis SABE President Chaqueta Stuckey SABE Secretary 2

Presenters Vicki Turnage, Support Juliana Huereña, Support 3

Purpose We will discuss how people with intellectual and developmental disabilities: Created a National self advocacy movement Developed relationships and supports with the available resources in their communities Educated and influenced policy makers national and locally 4

Formation of a National Organization First National People First Conference Attendees voted to start a National organization Formed steering Committee Elected region representatives st conference 5

There are 9 Diverse Regions 6

Committee Recommendations Discussed how a National Self Advocacy organization could work Created an Easy to Understand Booklet Created a Sample ballots for the next National Conference in Nashville, Tennessee 7

First Board Meeting Decided on name: Self Advocates Becoming Empowered Published newsletter Recorded videos about the meaning of self advocacy 8

Roland Johnson, "Who's in control? Are you in control or is the staff in control?" Spent his childhood in an institution in Pennsylvania Challenged individuals with disabilities and human service workers Respected leader 9

Wingspread retreat – In April 1993, SABE met at Wingspread Conference Center in Recine, Wisconsin. SABE’s first position paper, Taking Place: Standing Up and Speaking Out About Living In our Communities. National representation on the President’s Committee on Employment of Persons with Disabilities 10

Justin Dart, father of the American with Disabilities Act (ADA), met with Self Advocates Becoming Empowered board members

Olmstead Decision History Lois Curtis and Elaine Wilson from Georgia Sue Jamieson filed a lawsuit on behalf Close The Doors Campaign Educate others about individuals living conditions in institutions 12

Olmstead Decision History There were large asylums throughout the United States in the 1880 By the early 1900, facilities were overcrowded and people were neglected 13

Olmstead Decision History Requires that all states must create a plan to make sure that people get a choice to live in the most integrated setting No American should have to live in a nursing home or in a state institution if that individual can live in the community with the right supports 14

Recording: RESPECT Grammy nomination in Best Contemporary Folk 1998 Self advocates need respect 16

Project Leadership SABE Project Leadership developed a 2- week leadership training seminar for families and individual with disabilities Knowledge and skills to advance the goals of self-determination 17

President Obama Signs Rosa’s Law 18

President Obama Signs Rosa’s Law On October 5, 2010, President Obama signed legislation requiring the federal government to replace the term “mental retardation” with “intellectual disability” in many areas of government. This measure, known as Rosa’s Law, strips the terms “mental retardation” and “mentally retarded” from federal health, education, and labor policy. “Intellectual disability” or “individual with an intellectual disability” are being inserted in place of these outdated terms. The rights of individuals with disabilities remain the same. 19

Position statements Marriage penalty Eliminate Subminimum wage Employment Transportation Technology 20

Position statements Many state have closed institution and segregated places Just Do It statement 21

The fight continues Inappropriate use of managing behaviors

National Partners Manages developmental disabilities partner organizations (AUCD, NDRN, NADDC) with priorities related to disability programs and disability issues 23

National Partners Supports university-based interdisciplinary programs in each state Serve local and state communities Ex: Leadership Education in Neurodevelopmental and related Disabilities (LEND) programs 24

National Partners Councils receive funding to support programs that promote self-determination, integration, and inclusion for people with developmental disabilities in: employment, education, advocacy in each state 25

National Partners Equality and fairness, citizens under the law Meaningful choice and empowerment Supports and participation in integrated communities Independence, equal access, peer support, self determination Cultural Competency, diversity of their state Positive impact 26

Access Partners Technology access Technology Handbook CRPD (Civil Rights for People with Disabilities) United Nations: working on access around the world 27

Legislative Partners Supported by parents of individuals with disabilities who wanted fulfilling lives in the community Disability Policy Seminar: Annual legislative training Opportunity for parents and individuals with disabilities to educate legislators about disability issues 28

Connecting Partners Supported the beginning stages of SABE Provide a Listserv for SABE board members and for Advisors of self advocacy groups 29

Connecting Partners Developed self advocacy toolkits easy to understand Contact information of self advocacy groups in the United States, each group has to update information when it changes 30

Family Partners Brothers and sisters of individuals with disabilities that support their sibling with disabilities support group Helped siblings with the voting process 31

Current Partners Institute for Community Integration National service programs and information Disseminate Employment information to individuals and families Write a white paper about employment issues for people with disabilities 32

Current Partners Worked on a report about the importance of improving Home and Community-Based Services (HCBS) for people with intellectual and developmental disabilities and individuals with Autism Standards for privacy, choice, integration, and access to jobs in the community 33

Current Projects Our Community Standing Strong (OCSS) Self advocacy Technical Assistance Center for 9 states Peer to Peer Technical Assistance Sustainability Plan to support self advocacy groups in their states Use Technology: Webinars and Video blogs on disability issues 34

Current Projects SABE Voter Project Work with NDRN Share information about: the voting process, access and barriers at polling sites, working with voting organizations Developed Peer to Peer Voter Training with toolkit, distance learning, and voting videos 35

SABE’s Plans for the Future Build the National Self Advocacy Movement by working with local groups within the 9 Regions by creating a National Technical Assistance Center Sustainability Plan includes: hiring a fundraiser and apply for funds: grants, foundations, contracts Partner with other organizations to work on disability issues together Help Shape Disability Policies Create a Youth Recruitment Plan 36

SABE 25 Years 37

JOIN THE FAMILY! SABE 38