News from The Arc of Northern Virginia

Charlie DeLoatche and his mother, Kymberly, took the lead on educating Senator Petersen on the following issue: Self Advocates don't want to build Institutions, or rebuild institutions. 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.
Charlie DeLoatche & Delegate Peterson

The Ask: 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.
Charlie shares his story: Charlie is four years old and has 24 hour nursing care in the community through the Elderly Disabled and Consumer Directed Waiver. Although he has many medical challenges, because of the support he receives from his parents, lovely sister Sophia and his community. Charlie is probably the ONLY one who does not know he is "sick!" He is a happy little guy, who on a daily basis reminds us all that he wants and deserves "A Life Like Yours" in the community not in an institutional setting!

Next Steps:
We must make sure that we build a community system that supports not only Charlie, but his 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!"

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 all 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 develop a plan so we can make our waiting list predictable for all people regardless of there disability.
   week 4 group 1

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.
Not everybody is eligible for the waiver, but we still need support!!!
People like Jill, Erin, Tom, Christina, and Pete are not eligible for Waiver services. Medicaid Waiver services are for those individuals who require "institutional level" of support-they are viewed as "at risk in the community". Many people with disabilities need "a little help" to be successful in the community; maybe for their entire lives these are the people we refer to as non waiver eligible; They are not "at risk" as defined by Medicaid, but without the right supports WE ARE ALL AT RISK eventually.
Last year Delegate Shannon and Senator Chap Petersen sponsored a bill that would provide 5 million dollars to help non waiver eligible to get the right supports in the community. We will be back this year asking that support again.

Next Steps:
Provide $2.5 Million for a pilot in one health planning region of the state to provide individualized services to people with intellectual and developmental disabilities who are not eligible for Medicaid waiver services. Service plans would be based on each individual's specific needs and would include outcome measures to ensure success. Services would include representative payee supports, drop-in bill paying, drop-in job supports and other supports that promote independence to the highest degree possible.

"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 50 people attend the three caf�'s today! Here goes:

Aileen : "I would like to see all your dreams come true."
Mark J.: "I would like a good paying job."
Barbara (Mark's Mom): "I would like to see Mark finish school and use his education in a good paying career."
Emily (Mark's twin sister): "I would like to finish college and go wherever the wind takes me. I would like to see Mark enjoy his life!"
Audrey: "Play Ball!"
Rick (Audrey's dad): "I would like to attend Audrey's college graduation and wedding."
Mark D.: "I wish healthy and happy lives for everyone."
Sheila: "My 21 year old Zach will be able to put his skills to use and enjoy a passion!"
Pat: "We build "A Life Like Yours" for everyone regardless of ability."
Senator Whipple: "We are a just and better Virginia!"
Delegate Brink: "All of us have our dreams come true."
Senator Petersen: "Everyone becomes a member of The Arc!"
Sheridan: "I will get to go to sleep-overs and be a waitress."
Delegate Albo: "See a Redskins game in person. I always stay home and watch my son because my wife is such a fan."
Delegate Shannon:" Be good husband, good dad and good community member."
Delegate Scott: "Get a Willie Nelson autographed picture from The Arc of Northern Virginia. really build a strong Virginia for people of all abilities!"
Tia: " I have many dreams, but the most pressing focuses on when I die. I want to know that services will be in place for my two daughters with disabilities. I will have no one to take care of them when I am not here."
Vivian: "Work with kids and get married in ten years."
Betty (Viv's mom): "Vivian gets a job she enjoys."
Mark G.: "Everyone can live "A life like yours"-families too!"
Dennis: "Live as many days in retirement as I have lived working."
Pamela: "Good paying job and getting married some day."
Mitch: "Someday we will get to retire and see our kids happy."
Carrin: "Everyone will get to know Bailey the way we do. She won't get put away somewhere in an institution."
Woody: "People don't have to WAIT to live and contribute back in Virginia."
Herk: "My daughter continues to live a happy and healthy life in the community even after I am here."

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

Senator Petersen: We learned that Senator Petersen was born and raised in Fairfax. He has been active in leadership roles for a long time, and as a leader he takes the time to meet and know each of his constituents. Senator Petersen is a long time friend of The Arc, from hosting an annual meeting with a sixties theme to running in the Patriot's Cup race-EVERY Year!
How exciting Senator Petersen wrote his own write up for our report!
Visit to The Arc Cafe - Posted by Chap at 8/6/2008 6:47 AM and is filed under uncategorized.

Monday morning I stopped in to visit at The Arc Cafe in downtown Falls Church.
For those of you that don't know, The Arc of Northern Virginia http://www.thearcofnova.org/ is a disability-rights organization which speaks for mentally and developmentally disabled people and their families. The Arc Cafe is their new headquarters.
The motto of The Arc is "A Life Like Yours." Among other things, The Arc sponsors an annual family picnic and the 8K "Patriot's Cup" road race at George Mason. It is a clearing-house of information for parents of kids with special needs. Nancy Mercer is the perpetually buoyant executive director.
But don't let the pretty faces fool you.
The Arc is one of the most effective advocate groups in Richmond, because they know the legislators and are not shy about requesting help. This year, in a very down budget cycle, advocates like The Arc were able to add an additional 600 MR waiver slots to the state budget. That means that 600 Virginia families with mentally disabled children are able to receive an annual stipend for in-home care.
It's not just about spending more money.
One of the major goals of The Arc is to move disabled children out of institutions and into a home (or group home) setting. This is a huge change in direction from the traditional U.S. model of isolating the disabled in institutions. Again, the approach goes back to the motto "A Life Like Yours."
In taking on this task, The Arc is often going head-to-head with state policies and state bureaucracies. The irony is that Arc's approach could offer a huge long-term cost savings to the state.
Right now, we are spending hundreds of millions in capital costs on institutions that house a very few disabled people. Starting with Governor Warner, the legislature has looked to reform this process by moving to the more home-based care. We did it from a cost savings approach. But increasingly it appears to be in the best interests of the children involved.
Bottom line? The Arc of NoVA is not just a disability rights group. It's also an education source for the rest of us.

Advocacy Tip: Join The Arc! (More on the Senator Petersen and his adventure http://www.oxroadsouth.com

People with disabilities have the same dreams that people without disabilities have. They wish to have a home, a job, a family and friends. People with disabilities often have different lives than their peers without disabilities-because the right supports are not always available. We learned that we can make sure people with disabilities have the same opportunity to live "A life like yours" prioritizing the following: