November 14, 2012

Somewhere over the rainbow...


When Alex was born I could not think past early intervention,
When Alex was three I could not think past pre-school and a dual placement,
When Alex was six I could not think past third grade,
When Alex was eight I could not think past supports in the classroom,
When Alex entered middle school I could not think past curriculum modifications,
When Alex entered seventh grade I could not think past educating our new school about being on a “team”,
When Alex entered high school I could not think past graduation,
When Alex graduated from high school I began to think and think and think about her future, one she wants and one that is positive and possible.
 And I am scared.

Through Alex I have learned what’s important, and that’s being part of the community. Valley Life for All has become my passion and despite the lack of funding for initiatives such as this has helped me find my way.

Part of my responsibility as the Executive Director of VLFA is to share information with our community on state and federal policies that impact funding for services for people with DD. So tonight, I sit here in my hotel room in Colorado Springs on the last night of a three day conference hosted by the Colorado Department of Human Services, Health Care Policy and Financing, and Public Health and Environment. I have heard many messages and learned many things, some good, some not so good.

I learned that Colorado has recognized the needs of people who are developmentally disabled. The Governor's new budget calls for funding to reduce the waiting list for people on Medicaid waivers waiting lists so they can get services.  This means 800 people with developmental disabilities who are living with their families and receiving minimal services will be able to be placed in programs in their communities.

There is a federal program in place to get people out of nursing homes and into housing of their choice, Colorado  will able to move 500 people who were placed in nursing homes and are not seniors, eight of those with DD and under the age of 50 (there are currently 50 such people in CO).

I learned there are many organizations, some government and some not, that really care for their clients and work their hardest to make a difference when they are challenged by rules, regulations, reporting standards and budgets.  I learned there is a lot of collaboration happening as we all look at ways to maximize our resources, share information and connect our silos.

But most importantly I learned that Alex’s definition of community is way different than our state’s. When Colorado celebrates moving 800 people of the waiting lists to receive support in their community they are referring to our local Community Center Boards. There are 20 CCBs in Colorado who are state funded (as well as by grants and donations) to provide supported living and employment options for people with disabilities. These are the group homes, sheltered workshops and segregated jobs that exist across our state.  These are the vans full of people with disabilities who go to Target together, or other outings. This is in community only be geography….this is segregation.

Alex is not on any DD waiting list, and despite the pressure to put her on one, we did not. Alex wants to live in her community, surrounded by her community and participating in her community, just like her peers.

The State program does not provide support for people who choose this option (except for an awesome program called CDASS which is currently in review) and Alex will have to make her own way, as will  thousands of other young adults with developmental disabilities. All supported by their visions for their futures, and they will make it happen.

And sometime, on the other side of the rainbow, some government organization will recognize that supporting people in their own communities, in housing of their choice is the most cost effective way of all…..and the most honorable.

And to bring this post back to today, lest I lose sight of our day to day celebrations, Alex bowled a 110, 125 and 93 at the State Bowling Competition in Denver on Saturday. Can anyone beat that?

video


2 comments:

  1. wow i can not belive there is no support for people who want to live in the community
    hang in there I am involed in Big Wave here in the the bay area maybe u can rally support for something similar

    ReplyDelete
    Replies
    1. Hi - I may have mis-spoken - there is no state support, but there are non profits (like Valley Life for All) who are working on this.

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