Realizing the Intent of the DD Act

Self-Advocacy

DD Networks have played a critical and often pivotal role in the development of the self-advocacy movement, both at the state and national level. The self-advocacy movement supports and encourages people with developmental disabilities to be their own self-advocates — in determining their life goals, directing their own services and supports, and living and working in the community. Consistent and persistent education of decision makers by the individuals served is essential if legislators and administrators are to understand the perspectives of people with disabilities. State agencies solicit and value the input of individuals with disabilities, with every state agency actively including individuals with disabilities on stakeholder groups and planning committees. These individuals benefit from support and training on how to become effective leaders and work with decision-makers. Self-advocates have local, statewide, and national organizations that receive substantial support from the DD Councils and UCEDDs. This support has contributed to the inclusion of self-advocates in high level policy decision-making around the country and has undergirded the national development of the self-advocacy movement. Inclusion of self-advocates in policy decisions has become a priority with the Centers for Medicaid and Medicare Services (CMS) which ask states to assure public input into decision-making about states' development of home and community-based services under their waiver programs, listing self advocates as the first group states should include for giving public input. This input will likely become a requirement with the passage of new proposed regulations from CMS.¹⁵

Self-Advocates as Change Agents:

The efforts of self-advocates organized by DisAbility Rights Washington and other DD Network members and advocacy organizations resulted in the legislature requiring that all public schools include disability history as part of the public school curriculum.

Impact of the Initiative:

• All schools in Washington state are required to promote the historical contributions of people with disabilities which means more than 1,000,000 public school students are made aware of this information.

Every year since 1999, the Wisconsin Board for People with Developmental Disabilities has provided core funding and technical assistance to establish and expand a statewide network of self-advocates comprised of local chapters and a statewide umbrella People First organization. During the past 12 years, People First Wisconsin has grown to include 20 local self-advocacy chapters with 500 self-advocates involved in local chapter efforts and an overall membership of 1,450 (925 self-advocates; 445 friends/allies; and 80 organizations) including an internet presence with a website and Facebook page.

Impact of the Initiative:

• Efforts in conjunction with Disability Rights Wisconsin resulted in the formation of the governor's task force on sub-minimum wage and successfully petitioned APSE to take a national position regarding sub-minimum wage.
• Developed 'Care for the Person' training which trained more than 300 medical students at the Medical College of Wisconsin and more than 125 nursing students across the state.
• Worked with local groups to: increase transportation funds for people with disabilities to five north central counties; extend community sidewalks and lengthening cross walk times in multiple cities; train local city bus drivers on accessibility, accommodation and safely securing mobility devices; create an integrated recreation program in their community.
• Supported a self-advocate to publish a book on her experiences who has since gone on to present her story to 3000 students in Wisconsin.
• Since 1999, the DD Network has supported three statewide self-advocacy conferences with more than 1,000 participants; more than 100 trainings to local self-advocacy groups — with 2,000 total participants; and self-determination training to more than 750 transition students.

Other self-advocacy efforts include the Washington State Developmental Disabilities Council (DDC) support of Self-Advocates in Leadership (SAIL) since 1990. This coalition of more than 200 people with intellectual and developmental disabilities (ID/DD) is influential in shaping public policy in Washington state. This coalition has been successful in impacting bills in every legislative session since 2004 from accessibility of voting machines to making sure all legislation uses respectful language, including removing the use of the word "retarded" form all statutes.