When I was elected to be on the board of Directors for the Arc of Virginia, I immediately started looking forward to attending the state convention in Virginia Beach (this past weekend). I assumed I would be attending by myself but since Daniela's school delay meant she would still be at home with us I knew, of course, she should attend as well.
I was a little concerned about what Daniela would do while I was in board meetings and attending sessions that I knew would not interest her. The convention had great sessions lined up for self advocates (people attending who have disabilities), but I wasn't sure how comfortable she would be attending them since it was unlikely she would know anyone. I explained to her that if she did come with me she would have to be independent much of time. She still really wanted to come so I told her that she was now a representative of Shepherds College and that her behavior would reflect on the college. She took this very seriously. I asked the college to send us some brochures to distribute, since I knew that people in attendance would be very interested in finding out more when we told them about Daniela's future plan for college (and they certainly were).
We arrived last Thursday morning just before the first sessions started. Daniela and I split up with her nervously attending a session about peer advocacy. I went to an informative session for board member training. When we met up after the session, she was really excited. She had already met people and loved the session. She went from being nervous to looking forward to attending all the future self advocate sessions. We went to the opening plenary together Later in the day, she attended her own session on dating and relationships (which she said was really cool).
After the afternoon sessions were over there was a beachfront reception with music. Daniela danced with some of her new friends while I chatted with Howard Cullum the President of the Virginia Arc, Jamie Liban, the executive director and other Arc leaders. I was truly humbled by their work (some for up to 40 years) on behalf of individuals with intellectual and developmental disabilities. These are the people who have truly changed the lives of Virginians (and Americans outside of Virginia) who deal with extreme challenges every day of their lives.
When it got dark, I wanted to head up to our room, but Daniela was having too much fun and asked to stay with her new friends (who planned to end the evening with karaoke). I, with some trepidation, told her to act responsibly and headed upstairs. I was really pleasantly surprised at Daniela's confidence and independence! She acted with maturity the entire weekend, informing her new friends she doesn't drink and letting the interested young men know that she had a boyfriend. My worries about her going away to school significantly diminished and I saw Daniela in a new light as she moved forward to take her place as an independent adult.
Day 2
The next day followed with many more interesting sessions for both of us, some together - some separately. The luncheon speakers were Alison Barkoff and Aaron Sisser from the U.S. Dept. of Justice. They work for the Civil Rights Division at the DOJ and are currently involved in the investigation against the Commonwealth of Virginia's compliance with the Olmstead Act (click for more info). Because this is an ongoing investigation, they mostly limited their remarks to their efforts in other states and what they have accomplished to maintain the civil rights of individuals with disabilities. It is through the dedicated efforts of the Arc, the DOJ, and others that institutions housing people with disabilities across the U.S. are being closed and better housing in their communities is being opened up. It is the Arc's (and my) great hope that the Virginia investigation will also lead to the reduction in the long, long waiting lists for Medicaid Waivers. One surprising fact I found out during the convention is that while Virginia ranks 7th in per capita wealth in the USA, it ranks 47th in Medicaid expenditures per capita. While many Virginians may be proud of this fact, they should be mindful that this spells disaster for thousands of families impacted by disabilities and poverty.
Immediately following the luncheon, Mr. Sisser and Ms. Barkoff went to a discussion forum for self advocates that I also decided to attend. I was really curious as to how well these advocates would tell their stories. Would any of them speak up for themselves? Well - there was no problem there. Person after person stood up and told their story, most very eloquently. The most moving stories were from those who had lived in institutions and who now had independent lives. It was obvious how seriously these attorneys were listening to what they were hearing. They restored my faith (momentarily) in the federal government. They are fighting diligently to restore "lives with dignity" to people who have been marginalized for centuries. At that point of the convention, I thought this was going the highlight of the convention for me. But by the end of the weekend there were so many highlights, it was very hard to choose.....
After this session I had to attend the Arc board meeting. It was dinnertime and I really didn't have something for Daniela to do, since there were no sessions for her. I gave her $20.00 for dinner but most of her new friends were heading out of the hotel to eat and party for the rest of the evening. Daniela didn't want to do that. We were both looking forward to a screening of a new documentary after my meeting. I told her she could head up to our room but she decided just to hang around the lobby and see if she could meet up with someone. I was a bit nervous about that, but decided to trust her judgement....
The board meeting was surprisingly fascinating. Daniela called while I was in the meeting, but I couldn't check my phone till the meeting ended. She had, indeed, found wonderful friends to meet up with and have dinner with in the hotel restaurant. Who is this new independent young woman (who used to be afraid of new people and situations)???
We then went to the documentary screening and I will write about it in the next post. I am an avid documentary watcher, but never, ever, ever have I been so moved and changed by a movie. Daniela was impacted greatly (as was was the entire audience.) Of course, having the cast of the movie (!) in attendance may have had something to do with my intense feelings. More on this in the next post.....
All the best,
Tina
I was a little concerned about what Daniela would do while I was in board meetings and attending sessions that I knew would not interest her. The convention had great sessions lined up for self advocates (people attending who have disabilities), but I wasn't sure how comfortable she would be attending them since it was unlikely she would know anyone. I explained to her that if she did come with me she would have to be independent much of time. She still really wanted to come so I told her that she was now a representative of Shepherds College and that her behavior would reflect on the college. She took this very seriously. I asked the college to send us some brochures to distribute, since I knew that people in attendance would be very interested in finding out more when we told them about Daniela's future plan for college (and they certainly were).
We arrived last Thursday morning just before the first sessions started. Daniela and I split up with her nervously attending a session about peer advocacy. I went to an informative session for board member training. When we met up after the session, she was really excited. She had already met people and loved the session. She went from being nervous to looking forward to attending all the future self advocate sessions. We went to the opening plenary together Later in the day, she attended her own session on dating and relationships (which she said was really cool).
After the afternoon sessions were over there was a beachfront reception with music. Daniela danced with some of her new friends while I chatted with Howard Cullum the President of the Virginia Arc, Jamie Liban, the executive director and other Arc leaders. I was truly humbled by their work (some for up to 40 years) on behalf of individuals with intellectual and developmental disabilities. These are the people who have truly changed the lives of Virginians (and Americans outside of Virginia) who deal with extreme challenges every day of their lives.
When it got dark, I wanted to head up to our room, but Daniela was having too much fun and asked to stay with her new friends (who planned to end the evening with karaoke). I, with some trepidation, told her to act responsibly and headed upstairs. I was really pleasantly surprised at Daniela's confidence and independence! She acted with maturity the entire weekend, informing her new friends she doesn't drink and letting the interested young men know that she had a boyfriend. My worries about her going away to school significantly diminished and I saw Daniela in a new light as she moved forward to take her place as an independent adult.
Day 2
The next day followed with many more interesting sessions for both of us, some together - some separately. The luncheon speakers were Alison Barkoff and Aaron Sisser from the U.S. Dept. of Justice. They work for the Civil Rights Division at the DOJ and are currently involved in the investigation against the Commonwealth of Virginia's compliance with the Olmstead Act (click for more info). Because this is an ongoing investigation, they mostly limited their remarks to their efforts in other states and what they have accomplished to maintain the civil rights of individuals with disabilities. It is through the dedicated efforts of the Arc, the DOJ, and others that institutions housing people with disabilities across the U.S. are being closed and better housing in their communities is being opened up. It is the Arc's (and my) great hope that the Virginia investigation will also lead to the reduction in the long, long waiting lists for Medicaid Waivers. One surprising fact I found out during the convention is that while Virginia ranks 7th in per capita wealth in the USA, it ranks 47th in Medicaid expenditures per capita. While many Virginians may be proud of this fact, they should be mindful that this spells disaster for thousands of families impacted by disabilities and poverty.
Immediately following the luncheon, Mr. Sisser and Ms. Barkoff went to a discussion forum for self advocates that I also decided to attend. I was really curious as to how well these advocates would tell their stories. Would any of them speak up for themselves? Well - there was no problem there. Person after person stood up and told their story, most very eloquently. The most moving stories were from those who had lived in institutions and who now had independent lives. It was obvious how seriously these attorneys were listening to what they were hearing. They restored my faith (momentarily) in the federal government. They are fighting diligently to restore "lives with dignity" to people who have been marginalized for centuries. At that point of the convention, I thought this was going the highlight of the convention for me. But by the end of the weekend there were so many highlights, it was very hard to choose.....
After this session I had to attend the Arc board meeting. It was dinnertime and I really didn't have something for Daniela to do, since there were no sessions for her. I gave her $20.00 for dinner but most of her new friends were heading out of the hotel to eat and party for the rest of the evening. Daniela didn't want to do that. We were both looking forward to a screening of a new documentary after my meeting. I told her she could head up to our room but she decided just to hang around the lobby and see if she could meet up with someone. I was a bit nervous about that, but decided to trust her judgement....
The board meeting was surprisingly fascinating. Daniela called while I was in the meeting, but I couldn't check my phone till the meeting ended. She had, indeed, found wonderful friends to meet up with and have dinner with in the hotel restaurant. Who is this new independent young woman (who used to be afraid of new people and situations)???
We then went to the documentary screening and I will write about it in the next post. I am an avid documentary watcher, but never, ever, ever have I been so moved and changed by a movie. Daniela was impacted greatly (as was was the entire audience.) Of course, having the cast of the movie (!) in attendance may have had something to do with my intense feelings. More on this in the next post.....
All the best,
Tina
Tina:
ReplyDeleteTwenty dollars for dinner seems more than reasonable, particularly with the hoteliers and their living and working conditions.
(Hospitality is a well-respected art, particularly when catering for a conference or some similar major event: as Daniela may learn within the next year or two!)
It was so moving to think about the people who have changed lives, without fear or favour.
Especially that remarkable session. And this, of course, being a piece of what is done every day.
Didn't think much about the "dating and relationships" session. I imagine many on Virginia Beach would have been very interested in the form and the content!
As for the independent woman: she was and is always here, there and everywhere. What a great way to come into the light.
How frequently is the State Convention run? And what input do various sectors/stakeholders have?
Daniela:
ReplyDeleteI haven't been on the site in a while, but after seeing the "Wretches and Jabberers" video, and reading this new post, I think I'm going make coming here a part of my routine!
Wow!! You really have learned a lot, darlin'!
This man here is soooo proud of his lady love for finally reaching her goal to independence!
I would also feel proud to know that, over the 5 or 6 years we've been together, I contributed to this effort. Ah, can't get any more prouder'n you than that, sweetheart!
On that note, you just remember, ol' Jeremy's here and always will be for his wonderful young and independent girlfriend.
Git'R'Done!!!!!!
Love,
Jeremy