hand with pen

December 1, 2014 Letter by Kathleen Springhorn to Beth Swedeen- Executive Director for People with Developmental Disablities

Dear Ms. Swedeen,
I am in receipt of your letter dated November 19, 2014. I have several questions for you after reading through the materials you enclosed.
First, the letter states that BPDD (Wisconsin Board for People with Developmental Disabilities) “does not have a role in implementing the Home and Community Based Services (HCBS) rule. The WBPDD is a Governor-appointed board that has a Federally funded mission to improve the lives of all people with developmental disabilities in the state of Wisconsin. During the recent comment period on the rule, the BPDD clearly favored eliminating workshops in Wisconsin, even going so far as to post a picture on the WBPDD Face Book page that showed a person with a disability working in a facility with the words “SEGREGATION FOREVER” posted across his body. Further, in a Cap Times editorial, Beth Swedeen, WBPDD Executive Director co-wrote, “These sheltered workshops seemed like a good idea years ago, but they are now costly at best and exploitive at worst.”
Because the BPDD has so clearly taken a position against the workshops, I question their neutrality as a government- funded organization acting for the common good of persons with disabilities. Further, I am not sure what their connection is with the Survival Coalition of Wisconsin Disability Organizations. The Facebook page for the organization states that: “The Survival Coalition of Wisconsin Disability Organizations is a cross-disability coalition of more than 40 state and local organizations and groups.”
As a parent of a disabled adult, I am extremely uncomfortable with a taxpayer funded organization taking a position to eliminate services on the continuum of a person centered approach for disabled individuals.
I will respond to your letter point by point.

“Many parents tell us that segregated settings are the only option available to them in their community”.
On the contrary, where I live in Walworth County, VIP Services presents a wide range of services to clients. Those who desire community employment receive it. Some clients like my son thrive in the workshop environment. The choice should be his, and should remain available.

The information from The Survival Coalition of Wisconsin Disability Organizations that was included with your letter, states that “the rule does not eliminate any service types currently offered”. However, the letter goes on to state that “some changes to the settings where service are provided or how services are delivered may be required”.
“Families and individuals indicate they want community based options. The HCBS rule will expand choices for families and individuals who have been waiting for community based options in their communities.”
In Walworth County, VIP Service works to find community employment for clients. In the years that VIP has been in business, it has fostered productive long term relationships with the business community. Choices are not lacking for VIP Services clients.
The information from the Survival Coalition continues as follows: Vermont worked with families to transition from facility based employment to community based employment in 2002 and public dollars are now used only for community employment services. Within three years, about 80 percent of the people who’d worked in the last sheltered workshop to close found jobs. Those who didn’t got other services based in the community”.
What about this other 20 percent? Most likely they were among the most severely disabled. How did eliminating the workshops affect their lives? As government appointed advocates for disabled, I find your lack of concern for the lowest functioning and most severely disabled to be extremely disturbing.
Further on in the informational materials provided to me was the following; “While supported employment has an initial higher cost than facility based employment, over the entire lifetime employment cycle, supported employment is 65.9% cheaper to fund than facility based employment as the need for direct supports fades over time”.
While this may be true for some clients, for many disabled individuals the need for support on the job would be unchanging. The Department of Vocational Rehabilitation provides a limited amount of job coaching. After this clients are on their own. The assumptions that community based employment is cheaper is no doubt true. Many people would be left out, the 20 percent in the example above, or more. No services provided would be free!

Efforts have been made to communicate a different position to the Board and have been met with indifference. The following information is from the A-Team Wisconsin website:
? May 2014 – 17 families and self -advocates from the state of Wisconsin spoke to WBPDD board members at a public comment period to share testimony http://ateamwisconsin.org/video/a-team-members-voice-their-choice-a…. The board lacked sincerity and compassion for the families and their request to recognize a full spectrum of employment choices.
? July 2014 – 6 families met with WBPDD Executive Board Members again to repeat their request for the WBPDD to value all work choices and publicly support them. Again, their response was indifferent.

I find it extremely disturbing that a taxpayer funded organization is eliminating the concerns of a significant portion of the disabled population from consideration. My 25 year old son Greg Springhorn is very happy and productive at VIP services. He also works as a volunteer at a local resale shop. He does not drive, and the transportation provided by VIP is crucial to him as is the socialization with his peers. He has tried working in the community, and has not been safe or successful. I find the material included in your letter regarding the availability of employment for the disabled to be unrealistic at best and foolish at worst.

In closing, we all want the best for our children. As advocates for the disabled, you are doing a gross disservice to a large part of your service population by taking a stance that eliminates established workshop services. I will continue to advocate for the sheltered workshops. I hope that as an advocate for the disabled, you will recognize that “one size does not fit all”.


Kathleen Springhorn