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Self-advocates and family members speak out at BPDD meeting

When the Developmental Disabilities Act (DD Act) was reauthorized in 1970, it established federal funding for each state to establish Developmental Disabilities Councils (DD Councils).  The overall purpose of the DD Councils was updated in subsequent reauthorizations of the DD Act to focus on advocacy as well as capacity building and systemic change that contribute to coordinated, consumer and family-centered and -directed comprehensive systems to provide community services, individualized supports, and other forms of assistance that promote self-determination for individuals with developmental disabilities and their families.

Wisconsin’s DD Council is called the Board for People with Developmental Disabilities (BPDD).  The Board’s employment goal in its most recent State Plan for 2012- 2016 states: “People with DD will be employed in integrated jobs of their choosing in the community.”  Over the past several years, since members of the statewide A-Team organization began advocating for maintaining a full array of employment supports in contacts with state and federal policymakers, we’ve come to question how this goal squares with the following BPDD statement on self-determination: “(The BPDD) believes that individuals with developmental disabilities and their families should be the primary decision makers in the management of their lives including determining how the limited amount of public funding available to support them is spent.”

Our question about how the two goals relate to each other increased after reviewing statements made by the BPDD Chair and Executive Director.  For example, although the Board Chair, Kevin Fech, has said that he is “a strong believer in individuals having choices on how they like living their life”, he went on record in a press release about the HCBS Settings Rule as saying that “BPDD has heard from people with disabilities from all parts of the state who are segregated, treated unfairly, and exploited” by “sheltered workshops.”  Similarly, BPDD Executive Director Beth Swedeen told WPR in March 2013, “People with the most significant intellectual and developmental disabilities . . . are working at sub-minimum wage. So they’re working below the minimum wage and they’re working in facilities that allow them to do that. And that’s a concern we have.”

On hearing or reading these statements, self-advocates, A-Team members, and concerned family members began to feel that importance of CHOICE was being denied by the very group who is designated by the federal government as an advocate for them.  That’s why we requested an opportunity to speak with Board members at their regular meeting during the public input session held on May 22, 2014.

While we praised BPDD for having a worthy and important mission; stated the board members are well-respected individuals; and even acknowledged the positive impact that is being made by BPDD in its efforts to promote integrated employment with businesses and state government, the individuals who spoke during the public input session requested that the Board also respect the importance of a full array of employment supports to many individuals with disabilities and their families.  We reminded the board members that employment at a skill development center based on an individual’s informed choice is allowed by the U.S. Department of Justice in its enforcement actions, which are based on the Americans with Disabilities Act.

I was very proud to hear the all of the heartfelt comments that were made by the 20 or so self-advocates, parents, and family members who spoke during the BPDD meeting on the 22nd.  This needed to be the family members’ show and it certainly was.  The board members would have to have hearts of stone not to rethink their positions as a result of the stories they heard.  The families who took time out of their lives – some traveling to Madison from as far away as Eau Claire — to attend this meeting were but a small sample of the thousands that feel the same way as those who spoke at the meeting.   I sincerely hope that the board members will truly reflect on what we said to them and what we will continue to tell them about the importance of CHOICE.  I also hope that Mr. Fech and Ms. Swedeen will make the video recording that was made of the meeting available to us, as I requested.

I personally delivered an envelope of questions to Mr. Fech and Ms. Swedeen that we would like to use to help structure a future dialogue with BPDD (you can see the questions here).  Mort Sipress, the Chair of the Chippewa Valley A-Team, recently sent a letter to Mr. Fech requesting sufficient time on the agenda of an upcoming BPDD meeting so that members of his group and other concerned individuals may have a meaningful discussion about the future of employment supports in Wisconsin.  In his letter, Mort said that we would like to “be able to begin working together to advocate around a consensus position, instead of sending contradictory messages that are confusing to policymakers.”  Amen.

Permanent link to this article: http://www.familiesspeakingup.com/2014/08/08/self-advocates-and-family-members-speak-out-at-bpdd-meeting/

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