Policy debate rages about where people with developmental disabilities should live. Urban settings? Rural? Alone or with people? People who are similar? Or, people who are different? Where should the Medicaid dollars be used?
Ultimately it comes down to a discussion about community. what characteristics define community? Who defines community?
At a time when we face a critical shortage of housing options for individuals with developmental disabilities, we also face virulent advocates and policy makers purporting that individuals with disabilities who utilize public funding should not be permitted the choice to live in a setting like Benjamin's Hope, asserting that such settings isolate people. These advocates seek to influence policy to prohibit people with disability the right to use funding to which they are entitled in their setting of choice.
At the 1990 signing of the Americans with Disabilities Act, President George Bush stated, "Today's legislation brings us closer to that day when no Americans will ever again be deprived of their basic guarantees of life, liberty, and the pursuit of happiness."
Yet, in March 2014 the Center for Medicare and Medicaid Services issued Home and Community Based Service rules that oppress innovative, fiscally responsible models that are in high demand by individuals with disabilities and their families. This rule effectively narrows choice.
When asked to share why he has chosen to live at Benjamin's Hope, Lucas VanderKolk (19) wrote these words:
bens hope is a place where everyone is welcome not only to residents but to the community also. I don't have to be scared of not fitting in because everyone is welcome.
I don't have that fear of sticking out like a sore thumb, because it's a place where everyone is welcome and people don't look at me funny or think that I'm stupid because I'm special needs. I never thought there would be such a place like bens hope. I don't have to hide anything ever, i don't have to worry about not fitting in.
I may be different but here at bens hope different is good and i am welcome unlike other places i just fell like i don't and can't fit in but at bens hope i don't have to worry about any of that.
By taking away choice, we stand in danger of returning to a day when people with disability had no voice. Let's not repeat the mistakes of history. Stand with us in protecting the rights of people with disabilities to define for themselves what community means.
Lucas, we hear you.