News from The Arc of Northern Virginia

Sponsor(s):
We would like to thank MVLE for providing the wonderful "brunch" for the two café's as well as the great company of Alex! (To learn more about MVLE go to www.mvle.org)

We would like to thank SPARC for their help facilitating the meeting today-who knew we could fit 12 wheel chairs (oops 14 in The Arc office.) (To learn more about SPARC go to www.sparcontheweb.org)

Key Issues Discussed Today included:

No More waiting to live in Virginia!
We don't want anymore waiting lists-we aren't funding fast enough! Currently Medicaid Waivers pay for most of our community based services. These services include Housing, Transportation, Work Support, Recreation Support, A Life Like Yours support. Thanks to leadership from Delegate Cox and Senator Whipple we received funding for 600 MR Waiver slots --but that is not enough. People are still waiting (in fact the waiting list grows a person a day!) The community becomes an unsafe place when the right supports are not available. We are going to be asking you to support the a plan so we can make our waiting list predictable -and reinforce the idea that people should not have to "wait" to live in his/her community. By funding our community adequately we will "level the playing field" for people of all abilities.

Next Steps:
The "A Life Like Yours" Act: Establish a commitment in state law to end the wait for the MR and IFDDS Waivers by 2014. This 6 year plan would require a 25% reduction of the MR and IFDDS Waiver wait lists in 2009, followed by a 40% reduction in 2010, a 55% reduction in 2011, a 70% reduction in 2012, a 85% reduction in 2013 and a 100% reduction in 2014. The reduction each year would be based on the wait list count at the beginning of the fiscal year.

No more institutions or institutional "programming"-We want to live with the people we choose to live with:
Self Advocates don't want to build Institutions, or rebuild institutions or institutional programming. We (self advocates and families) understand that the General Assembly thought that they were doing something nice when they gave 100s of millions of dollars in capitol money to Central Virginia Training Center and Southeast Virginia Training Center in the special session this year. Self Advocates don't want to live in large institutions regardless of our ability.
We understand that funding group homes is one way to use waiver dollars, but we would like to put a twist on this idea. Why don't you invest in affordable, accessible and supportive housing-and let us choose where we want to live and who we want to live with??? Isn't this really what "Money Follows the Person" is all about?

The Solutions:
We ask that you use the capital dollars wisely, investing in small group homes, apartment buildings, places where people can live and wrap the right supports around them so they don't lose the ability to live A Life Like Yours.

Currently the Medicaid Waiver only pays for services NOT bricks and mortar or general supervision-it would be great if every-time someone was eligible for a Medicaid Waiver "slot" they would also get a Housing Voucher so people with disabilities REALLY could have the resources to choose where and with whom they live!

Next Steps:
Allocate $50 Million in state capital funds to create a specialized fund to be used as match funds by local governments and non-profit providers to build community infrastructure and provide residential alternatives to institutionalization. (75% state funds would be matched with 25% local or private funds)
Did you know a person needs to earn $22.00 an hour to live in Northern Virginia?
The current waiver reimbursement rate for a Direct Support Professional/Personal Care Attendant is half that, and they don't get benefits like health care, retirement, or workers compensation. These Workers are employed by the state through the Department of Medicaid and should be treated as state employees-with the same benefits! As Virginia moves away from institutions and towards community based care our workforce is shifting-so must the pay and the benefits. We want to say that our Direct Care Workers can make A Life Like Yours. Please work to pass legislation that will value the important work they do in there every day life 24/7.

Solutions:
We must make sure that we build a community system that supports not only the person with the disability, but also his/her loved ones and caregivers -they need "A Life like YOURs" as well. While investing in building communities versus institutions through getting rid of "waiting lists" and "funding waiver slots" we must also remember that the jobs must pay living wages to direct care professionals who choose to do this important work-24/7.

We need a plan to get rid of the idea of "waiting to live in the community" and embrace the idea that "direct care professionals deserve good pay, benefits and retirement once they sign up for this career choice through our state system!"

Where does the Money Come from to Build and maintain "A Life Like YOURS?"
The group learned more about the way services were funded or "not funded" in the community.

Services are currently funded by three different government resources-

Delegate Bulova and Senator Howell shared that as we discussed the different ways community based services were funded-it is important to listen and when we hear legislators talking about using "State General Funds" we have to understand that the State General Funds represent money that is used for things like:
·       Human Services;
·       Safety;
·       Transportation; and
·       Many more of our core services.

Senator Howell pointed out that we have a defined pot of money in the State General Fund-and it is going to be a difficult budget year! We are all going to have to work together to make sure we make good choices and investments-STARTING NOW!

"If we use general funds for transportation-roads not specialized transportation" We must all understand that there will be less general funds for the other core services! For people with disabilities this will mean that this is another area that will be "tapped" and "not available" for building community based services.

"I have a dream sessions": The hosts facilitated a dream sharing time during the visit. But as you can see we had a lot of dreams to capture over the day as we had over 40 people attend the two café's today! Here goes;
Supervisor Sharon Bulova: "We will finish with fiscal 2010 budget and everyone will be happy and satisfied, and we will have made positive changes for everyone."

Cathy: "To be a race car driver - she really knows how to maneuver her chair in tight places!"
Ellen: "To choose her own day program like SPARC which she goes to three days a week."
Tim: "I have learned the power of employment-I wish
Phil: "We should be able to pick where we live and live with our friends-make our own group homes!"
Pierre: The Dallas Cowboy fan: "We can make college a reality and not a dream if we give people the right technology, smaller classrooms and larger desks to work upon."
Jonathon: "I would love to get a job!"
Jane (Elizabeth's Mom): "My dream is two parts, 1. Help my daughter in any possible way; and 2. Understand this very complicated system of acronyms, eligibility requirements, denials and appeals."
Elizabeth: "I would like to live in a place of my own and have a job to pay the rent."
Jill: "Take risks, skydiving, get a tattoo and have a personal relationship."
Senator Howell: "I like to take risks too, but not the same ones as Jill! I would like to have the time to travel the world on a personal note. But my real dream would be to see everyone's dreams come true in Virginia."
Brian: "I wish for more services for people with disabilities, all over Virginia."
Erin: "Take regular classes on campus at GMU and open my own magazine some day!"
Leslie: "Senator Howell and Delegate Plum were so helpful in helping my son Michael live "A life like yours" unfortunately we had to move Michael over to Maryland to find his "life"-my wish is to have Michael living closer to us in Virginia some day."
Louise: "Recently moved here from St. Louis and I hope to build a happy life here."
Monica: "We don't have to hold any more fundraisers to pay for SPARC!"
Numi: "Go to GMU and become an architect."
Bob (Kyle's Dad) and Kyle: "When Kyle graduated from South Lakes School there was nothing for him in the community, unlike his brothers who had many choices. Our dream has come true with SPARC-- it is a place for Kyle to be a member of, grow and thrive, with Cleo his long time personal care attendant by his side!" (Kyle had lots to say today, he spoke softly through both café's and went to sleep after a long morning of educating!)

I have a Life Interviews: The Hosts shared their personal stories and learned a little more about each of our guests!

Supervisor Sharon Bulova: Supervisor Bulova has been on the Board of Supervisors for 21 years and she is currently the Vice Chair-she represents the Braddock District! We all learned that Supervisor Bulova is the mother of Delegate David Bulova-it is hard to believe they could be sibling!. (Del. Bulova stated that he was surprised to hear his mother say he had been working for 21 years-I don't get it, I am getting older and she is getting younger!) Supervisor Bulova shared that it is going to be a very tough budget year in Fairfax and for the first time ever the County Board is going to be holding 20 Community Discussion Forums around the county to hear from the community about what they think is "most important" to have and fund in our communities. "It will be much like this meeting not like the public hearings where you have three minutes to tell your story. You will have a chance to discuss important issues and educate not only the Board of Supervisors, but also your neighbors and other community members." Supervisor Bulova reminded us that "We are all in this together!" so it is important to be part of the discussion; to be part of the solution. (To learn more about Supervisor Bulova go to www.fairfaxcounty.gov/braddock)

Advocacy Tip: "The Arc writes the book on Advocacy. You are upbeat, and are honest and straightforward with your legislators. The Arc and its advocates make it real and relevant.