News from The Arc of Northern Virginia

I have a Dream, I have a Life, I have a Name
2008 Campaign
August 22, 2008

The Arc of Northern Virginia is putting our advocacy efforts into the hands of our advocates with disabilities this legislative session.
What does that mean?
Well, we have heard from self advocates around the state that they:
"Want to be in control of their lives!"
With that being said, we have given self advocates in Northern Virginia the opportunity to take control. - one legislator at a time.
We decided to set up a "Café'" much like the set in the show "Friends." We serve coffee and snacks along with ours our dreams, lives, names and legislative agendas. We have a breakfast, brunch and a late snack shift available each day--one or more legislator and his/her staff are invited to the Café.

Guests included:
Legislators and Aides who wanted to learn more about building and supporting ""A Life Like Yours""! We would like to thank Senator Ticer and Peggy Papp (legislative Aide); Delegate Dave Marsden; Supervisor Michael Frey and Marley (Dog); Delegate Tom Rust; Delegate Mark Sickles; Senator Toddy Puller; John Connor for Delegate Kris Amundson; Delegate Ken Plum and Delegate Tim Hugo for participating in week six of our "I have a dream, I have a life, I have a name campaign".
Sam May's 19th birthday was the day of the Cafe

Sam May's 19th birthday was the day of the Cafe

Constituents from the community who joined The Arc team to serve as hosts and share their dreams as well, Liz Tomlinson (Fairfax); Michael Smith (Alexandria); Andy and Donna Martinez (Fairfax); Jane and Elizabeth (McLean); Patrick Watt (Reston); Kathy and Sam May (Fairfax)(celebrating his 19th birthday); Vivian and Betty Alonso (Fairfax); Brian Clukey (Falls Church)
Hosts:
The Host staff was responsible for giving a tour of the office, making introductions, sharing the Credo of What Self Advocates Expect in Virginia and presenting a draft Legislative Agenda.

Jill (Vienna), Erin (Fairfax), Christina (Fairfax), Catherine (Reston) the event with our wonderful photographer Kathy Jenkins (Fairfax).

Key Issues Discussed Today included:
Group 2 wk6

It's time for a Paradigm Shift Virginia
No More Waiting for Respect or Life in the Community!

Regardless of what Café a passerby walked into today they would have heard the same thing; People with intellectual and developmental disabilities, their families and friends believe that the "wait should be over".
We are tired of waiting for:
Life in the Community and all that comes with it; and
Respect!
The advocates from The Arc of Northern Virginia have prioritized the following "next steps":
The next step to make our legislative agenda a reality is to figure out how to prioritize our issues. It is not easy to prioritize building ""A Life Like Yours"" when you fall between 48th/47th in the nation in funding in community based care.

Three issues we want to highlight this legislative session include:

I. Support the ""A Life Like Yours"" Act":
People should not have to WAIT to live in the community! The Arc of VA has a plan for you to take to Richmond. "The "A Life Like Yours"" Act proposes that we can develop a plan to get rid of the MR/ID and DD waiver waiting lists in six years. This is an exciting proposal as the waiting list grows one person a day-regardless of the fact 600 waiver slots were funded last session!

The "A Life Like Yours" Act proposes that we make a commitment to fund the waiting list at 25% the first year and 15% the following five years. What is exciting about this is it will look like a bell curve-that means funding more "slots" at first, but over time as we get rid of the large numbers the number and cost of slots will become less. By the end we will have "leveled the playing field." This is exciting to think that funding community based care does not have to "break the budget!" We all don't need a lot of money-sometimes we just need a little to live ""A Life Like Yours"".

2. Pass The "R" Word legislation-both of them:
Last year was an exciting year, we hand a unanimous vote in support of getting rid of the words Mental Retardation in the state code! But we don't want to create legislation that might hurt us in areas like funding and protecting rights! Senator Ticer and Del. Caputo have signed on for another year to help us write two new pieces of legislation:

Change the state code in the human services area first, as well as other areas of the code that would be impacted. This legislation would be about 193 pages versus 363 pages. We would like to thank The Secretary's office, the Attorney General's office and the Office of Intellectual Disabilities for work on this issue for the past year and over the summer.

We will need a resolution to make sure there are work groups to address code changes in other parts of the code. This is exciting-we hope that people with ID/DD will be able to play a role in these work groups, which will give us a chance to meet and work with leaders in other parts of the Commonwealth's government. We believe that once people (outside of human services) have a chance to meet and work with individuals with ID/DD-they will want to work, live and play by people with ID/DD and we will all be another step closer to building and maintaining ""A Life Like Yours"" throughout Virginia!

3. We want to invest in communities not Institutions:
We have begun to work with our legislators to let them know that it would be important to use this opportunity where we need to "fix up our institutions" to make them safe to change our institutional thinking-Why do we need to build Big? Why don't we invest capital dollars in building our affordable, accessible and supportive housing models, small group homes, apartments and duplexes across the state? We could wrap the right supports around people so they could truly live "A Live Like Yours."

"I have a dream sessions": The hosts facilitated a dream sharing time during the visit.
Senator Patsy Ticer: "Leave the state a little better than when I got here"
Peggy Papp (legislative Aide): "Retire with enough money."
Michael: "To learn to read."
Andy: "Become a pig farmer-or take a trip on an airplane!"
Liz: "I am 61, a widow, raising my adult son who is mute and has autism. I work full time and would like to go to school-but I am waiting to help my son fulfill his dream of getting "A home of his own."
Supervisor Michael Frey: "Our Budget would have more money than needs!"
Senator Puller: "Since I have been in the legislature you hear the same requests over and over again. This is my third recession, although we are not calling it a recession. It feels like we have one year of good times and then several years of "cuts". My dream would be to see more good years than bad, and to see my two beautiful grand children grow up."
Delegate Mark Sickles: "All my neighbors could hear what I heard today, and our jobs as leaders would be so much easier."
John Conner (Del.Kris Amundson's Legislative Aide): "I hope I took adequate notes and caught all this wonderful discussion!"
Del. Ken Plum: "Your dreams are eventually realized!"
Delegate Tom Rust: "Eliminate indiscrimination of all forms, a way to have strong communities for all and we won't have to raise taxes!"
Delegate Dave Marsden: "We have continuity in our government so we can develop comprehensive plans for addressing all the needs in our Commonwealth in a systematic fashion."
Delegate Tim Hugo: "No more waiting lists!"
Sam: "I want to be a football player, not for the Patriot's they lost, to the Redskins."

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

Senator Patsy Ticer:
Senator Ticer has been in public office since 1982. During that time two of her elected positions have included: Mayor of Alexandria and a Virginia Senator. Did you know that Senator Ticer was the first woman elected as Mayor in the city of Alexandria? With this being said Senator Ticer is a great mentor to The Arc of Northern Virginia as we work to be the first to do a lot of things like changing the words mental retardation to intellectual disabilities in the state code-a bill which Senator Ticer patroned last session! On a personal note we learned that Senator Ticer is an animal lover! During our discussion of animals Jill Egle' did an impression of Nancy's dog Carter (It was very realistic) to which Senator Ticer responded, "It sounds like our dogs were very similar? Does your dog have beagle in him?" Currently Senator Ticer shares her town home in Alexandria with her two cats, Misty and Beau. Last year Patsy lost her husband, and she reported that helps to come home to her two friends who are always waiting at the door for her. "The house doesn't seem so lonely." To find out more about Senator Ticer go to www.patsyticer.com.

Animal Adoption Hint from Senator Ticer: "Always adopt two if you can - animals like to have companions-just like us!"

Senator Ticer's Legislative Aide, Peggy Papp:
Peggy has worked along side Senator Ticer since 1982! Peggy shared that you could learn a lot more about her if you "googled Peggy Papp." You would find out that she is a famous psychologist. She has written a book on marriage. She lives in New England. Then Peggy cracked a smile and said, "Just kidding! Isn't weird that there is another Peggy Papp in the world?" Peggy shared that she too is an animal lover and took some time to brag about her three cats, Parker, Bill "The Cat" named after "Bill the friend"; and Weep who got his name because that is the sound makes "weeeeeepppp" (another good animal impression). It is important to remember that every great leader is surrounded by great staff-we are lucky to have Peggy Papp on board!

Delegate Dave Marsden:
Delegate Marsden has been a great friend to The Arc of Northern Virginia over the last several years. Government is most effective when our leaders take the time to understand the needs of his/her constituents. Del. Marsden reminds us that in our current system(s), "Unfortunately, when you take care of one constituent's need-it may mean you have had to take from another." Delegate Marsden would like to see Virginia commit to making a plan for improving how we do business as a Commonwealth-in all areas! We need get rid of the systems we have created and are "shackled too." We need to develop goals and plans to improve everything from the juvenile justice system to dealing with the ID/DD waiting lists!

Delegate Marsden has made a commitment to learning about community and how it can best support people with Intellectual and Developmental Disabilities. Ask his constituent Glenda, the DD Waiver Team at The Arc and MVLE-we really appreciate the fact the Delegate Marsden takes the time to understand each of his constituents and determine best ways to help them live ""A Life Like Yours"."
To learn more about Delegate Dave Marsden go to www.marsdenfordelegate.com.

Delegate Tom Rust:
"I don't know a lot about this area, but I do know that the MR Waiting list never seems to go away." Delegate Rust came prepared to ask questions:

1. How do we address the fears parents have about the needs of people currently living in institutions-when we talk about downsizing?
Nancy reported, "If we had an adequately funded waiver and community system. We wouldn't even have to ask this question. Because people would all be living in the community with the right services wrapped around them." Delegate Rust then went onto ask if there would always be a need for institutions, for some people.

The group answered, "There will be people who will always need an institutional level of service, but this does not mean it has to be in 300 bed facilities-The Arc and people with ID/DD would like to see institutional services offered in smaller settings and in the community.

Delegate Rust and the group learned that the Northern Virginia Training Center offers dental, psychiatric and medical care to the community-often time services that are not available to people with ID/DD. The Arc would like to see the "Training Centers" move to "Training professionals in the community so we could build community capacity-and people with ID/DD could go to any professional in the community rather than having to return to the Training Center for his/her medical care-Now that would be a center for excellence!

Delegate Rust wanted to understand how parents of people living in the institutions and parents who believe in community services can come together on this issue. We referred the group to House Document 76:
http://www.dmhmrsas.virginia.gov/documents/OMR-HouseDocument76.pdf.

This document represents work from a year long process made up of representatives from all parts of the community-and outlines the goal of ultimately funding the community adequately-so everyone can live lives in the community with the right supports in place!
To learn more about Delegate Tom Rust go to www.tomrust.org.
cafe group

Supervisor Michael Frey:
Supervisor Michael Frey has been a long time friend of The Arc and partners with the Virginia Ability Alliance, we have walked with him at the Buddy Walk and listened as he gave the proclamation for Anglemen Syndrome the spring of 2008. Supervisor Frey, of the Sully District, always travels with his family "Marley" a rescue dog-and today was no different.

Supervisor Frey listened carefully to all the discussion and shared his commitment to creating ""A Life Like Yours"" for people with ID/DD from a county perspective. "The County board has made people with ID/DD a priority in our budget for years. We and the citizens of Fairfax believe that it is important to provide a life after graduation. Unfortunately we have so many needs and never seem to have enough money. I am continually impressed by the strengths and resourcefulness of families who make raising a loved one with a disability look effortless in a community with limited resources."
To learn more about Supervisor Michael Frey go to www.fairfaxcounty.gov/sully

Senator "Toddy" Puller:
Senator Puller represents Fairfax and parts of Prince William County. When the Senator saw that MVLE had sponsored a café' she said, "I know MVLE, they do great work!" Senator Puller has been in public office for many years since 1991! Senator Toddy Puller serves on the following committees: Chairwoman, Rehabilitation and Social Services: Commerce and Labor; Courts of Justice; Local Government, and; Rules. Senator Puller has championed causes in all parts of our community from services for screening services for newborns to supports for veterans-Senator Puller takes time to know her community and ensures that when she gets to Richmond she represents the needs of her constituents-which includes many of the military communities on the route one corridor.

Senator Puller shared that "It feels like we get one good year to fund our communities and then we have several years in a row where we have to cut services to balance our budget. I would like to see that trend reversed."
To learn more about Senator Puller go to www.toddy.org.

Delegate Mark Sickles:
Delegate Sickles is a relative newcomer to the Richmond scene, elected to his first term as a delegate representing southern Fairfax County for the last three years. But Del. Sickles has a long history of public service locally, and as a volunteer on campaigns for people like Delegate Keating and Senator Gartlan-Del. Sickles is active in his church community and takes an interest in making sure our libraries have the resources necessary to be "learning communities."

The Arc appreciates Del. Sickles and his team because they always make time to learn about The Arc of Northern Virginia. Del. Sickles listened to the legislative agenda and then took some time to educate the group about "State General Funds." This is a topic that has come up a lot during our café' sessions-- and today it was even more timely as we had just heard Governor Kaine's announcement about the upcoming budget shortfall! Once again we heard the "state general funds" are a resource that many parts of our community depend on it is important to understand that it is limited in scope and that we are going to need to really take time to prioritize this year with the upcoming budget shortfall projections at the state and local levels.

Del. Sickles also shared that he would love to share the same dream as Christina. Live at the beach and sell suntan lotion!
http://www.marksickles.com/

Delegate Ken Plum:
"Changing the 'R' word is not simply a name change. It represents our opportunity to make a paradigm shift in the way we support individuals with disabilities in our communities." Del. Plum went onto say that although we have made strides in creating ""A Life Like Yours"" for people with disabilities we have more to do. Yes it will be a tough budget year, but it will be important for constituents to come prepared to Richmond with well thought out plans and directions for their leaders. "We have a short time to get through all the requests, it helps when you give us your list of priorities."

Delegate Plum understands the importance of services for people with mental health, intellectual/developmental disabilities, and substance use issues-he was at one time on the Fairfax County Community Services Board. He is a wonderful resource for his colleagues in Richmond when it comes time to make tough decisions in what is truly a "core service."

Did you know Delegate Plum is a movie star in addition to a legislator? You can catch Delegate Plum on his talk show the Virginia Report at http://www.rctv28.com/videosVR.htm! To learn more about Delegate Plum go to http://www.kenplum.com.

Delegate Tim Hugo:
"I just got home from vacation and made sure I got to this meeting on time." Delegate Tim Hugo arrived at The Arc office tanned and relaxed. He enjoyed watching Jill Egle's YouTube letter, "Can We Talk Ben Stiller?" http://www.youtube.com/watch?v=7eOBOAlQH54 and then reported to the group that "I will not be going to see Tropic Thunder!" to which he received cheers. Del. Hugo also asked Jill to share her letter with him as well as the link to the YouTube video and he would send it out to his list of constituents. YOU Go Delegate Hugo!

Delegate Hugo listened to the legislative requests and really like the "A Life Like Yours" Act that would get rid of the MR/DD waiver wait lists in six years. "No more waiting lists," Delegate Hugo shared, "People should not have to wait to live in the community." In addition to the waiting list issue Del Hugo said he would throw his support behind the "R" word bill in Richmond. The group was energized by Del. Hugo we had a birthday party for one of his constituents, Sam May and spent the rest of the visit taking pictures and visiting. Wait until you see the picture of Del. Hugo, Andy and Sam doing the "power lift" pose!