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| ..not circling the wagons |
It also appeared in the Lander Journal (“Working Together,” 9/25/2013), the Gillette News Record (“Wyo. needs to do more for developmentally disabled,” 9/25/2013) and the Wyoming Tribune Eagle (“Families of the disabled must carry their torch,” September 20, 2013)
Connie Howard is VOR’s Wyoming State Coordinator. Connie’s son, Mark, has profound intellectual disabilities and has received high quality, specialized supports in both facility-based and community-based settings.
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We must work together, not apart
by Connie Howard
September 21, 2013
Casper Star Tribune
Casper, Wyoming
I have been advocating for people with developmental disabilities for 53 years. By no coincidence, that’s also how old my son is.
Mark is developmentally disabled. While young, I never said “I want to be an advocate for people with disabilities when I grow up.” Like so many other families of individuals with developmental disabilities who daily advocate for their loved ones, my son has brought out the advocate in me.
While my advocacy is certainly motivated by my son and his needs, I also recognize that he is part of something much bigger. Mark is part of a population of developmentally disabled adults who are served by a complex web of state and federal programs all designed to ensure that he and his peers are adequately and safety served in settings of their choice.
Calling on the general public to support the least-abled among us is the greatest moral test of our government and its people, as noted so aptly by Hubert Humphrey.
The compassion of the general public in helping to provide my son and his peers the supports they need is not lost on me. I recognize that what Mark receives is a blessing, not an entitlement.
But, the system is not perfect and that motivates me too.
The system allows aging parents to continue caring for their middle-aged loved ones with developmental disabilities long beyond what is reasonable. The system allows 600 Wyomingites in desperate need of services to wait. Worst of all, because it can hinder (or stop) progress, legislative debates about the system’s future encourage infighting among advocates for people with disabilities.
Recent proposals suggest that Wyoming’s main Medicaid programs for people with disabilities – the Wyoming Life Resource Center and community-based programs—must be cut (translation: individuals will lose services) to provide funding for people waiting for services.
Don’t get me wrong. People in need should not have to wait another day. But, how is “robbing Peter to pay Paul” a solution?
Yet, even as every advocate sees the injustice of depriving one segment of the population to meet the needs of another, it still takes a collective resolve to avoid “circling the wagons” in support our own programs.
On Sept. 26, Gov. Matt Mead, like many state officials and legislators before him, will visit the Wyoming Life Resource Center. I am encouraged by these visits. Too often, elected officials make policy “sight unseen.” Mead will see firsthand the wonderful care my son and his peers receive. He’ll see profound needs being served so compassionately.
If given the chance, I will use this opportunity to encourage the governor’s support for a broad continuum of supports, services, residential, and employment options that match the broad spectrum of abilities, needs and preferences within the disabled population. I vow not to “circle the Wyoming Life Resource Center wagon.” My support for WLRC will be clear but not exclusive. A continuum of service options is needed.
I will also continue my advocacy in Cheyenne, attending rallies in support of expanded community-based programs, while also speaking in support of the great need filled by WLRC.
I will also encourage many more fellow advocates to do the same. As Pastor Rodger McDaniel wrote in his blog, “The developmentally disabled, their families and advocates should flood the Capitol building. They should occupy the rotunda of the building, filling it with the faces of the people who will suffer the impact of the choice the Legislature made.”
Families of Wyomingites with developmental disabilities must carry the torch for our loved ones, and we must do all we can to carry this torch hand-in-hand.
For if not us, then who?
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