Thursday, November 13, 2014

Disability Politics: Divide and Conquer

These remarks were made when Thom Tillis was the North Carolina Speaker of the House. He is now the U.S. Senator-elect from North Carolina:

"What we have to do is find a way to divide and conquer the people who are on assistance," Tillis said. "We have to show respect for that woman who has cerebral palsy and had no choice, in her condition, that needs help and that we should help. And we need to get those folks to look down at these people who choose to get into a condition that makes them dependent on the government and say at some point, ‘You’re on your own. We may end up taking care of those babies, but we’re not going to take care of you.’ And we’ve got to start having that serious discussion." 


Daniese McMullin-Powell, the Chair of the Delaware State Council for Persons with Disabilities, did not hold back when she talked to reporter Beth Miller about federal funds paying for services for people with disabilities who choose to live in congregate care (more than 3 or 4 people with disabilities living together):

"...she does not want government money used to support segregated communities for people with disabilities. That money should go to those who can live in ordinary community settings and want to do so. 

"'This would suck up every drop of Medicaid money there is,' she said. 'If they want to choose congregate living, then let CMS use only nursing home money. Don't suck it all up because you want to live in summer camp forever.'" 

In response to these comments, Dr. Lanny Edelsohn wrote in an opinion piece about McMullin-Powell's remarks:  "...I am nonetheless most grateful for her finally revealing something that many in the disability community have long suspected but no one has yet had the courage or honesty to admit: that at the end of the day, this battle over the direction of the Medicaid waiver, while superficially clothed in the appealing rhetoric of 'rights,' is, like many things, actually about money." [emphasis added] 


Then there is this from The Press Democrat: "Close to Home: Time to end war over the Sonoma Developmental Center" by Kathleen Miller, 11/8/14. Kathleen is president of the Parent Hospital Association at the Sonoma Developmental Center in Sonoma Valley, CA. 

"...Following the [Halloween] parade, I took my son out to lunch. While at one of the local restaurants, I ran into a former SDC employee who now works for a community day program provider. Her clients were eating there also, and we enjoyed a brief minute to chat. I reminded her that it was parade day at Sonoma Developmental Center. She had always been an enthusiastic participant during her years working at the center, and we both agreed what fun it would be if her community clients could join with SDC residents and participate in the parade.

"She shook her head and shared that it was frowned upon for those in her program to in any way participate at SDC events. I didn’t have to ask why. It is an old battle that continues today.

"As long as I have been aware of developmental centers and community services outside of the centers, I have also been aware of the friction between them. Care providers tell their clients horror stories about what life is like inside developmental centers. They bring them to legislative hearings to urge for closure even if these same clients have never set foot inside of a developmental center."


Kathleen Miller would like to create "...a seamless system that serves all of the developmentally disabled populations, including those that regional centers struggle with. We need to find ways to use the Sonoma Developmental Center infrastructure to create something special, a system that can fill the gaps in care that exist in today’s system. We need a system that cannot only help the center’s residents but those in community setting where services are not working."

She is disheartened by the old voices that only want closure, but she is also hearing new voices that give her hope:

"These new voices either know nothing about the old battle lines or want to rise above them. It is my hope that together we will be those who decide the future of Sonoma Developmental Center and of the system of care going into the future."

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