Great News!! IRIS funding re-instated for Shepherds College students!!

From Tina - Last night, we received a wonderful email from Shepherds College letting everyone know that the state of Wisconsin, after many emails, meetings and interventions, has decided to allow the Wisconsin students to continue to receive IRIS funding while attending Shepherds College.

The Board of Directors and college staff spent countless hours and made superhuman efforts to help make this happen. The bold, daring  move they took in delaying the college opening for a month has resulted in a miracle. There was also incredible support and help from numerous federal and state officials in helping to successfully resolve this challenging issue.  All of the previously funded students will be able to return for orientation next week!

In the end, everyone involved in the decision came to see what we already knew, that this innovative program makes incredible use of the funding to help these students attain their maximum level of independence and enjoyment of life. It gives students the tools to live a life with purpose and dignity. It helps them to truly become part of their community, not only in Union Grove Wisconsin, the home of Shepherds College, but also in each of the communities they return to after their graduation (though Shepherds continues to be play a supportive role for the rest of their lives, if the graduates so desire.).

Daniela actually also became a Wisconsin resident in June, when I helped her move all of her belongings there and she established her residency (She's actually just a Virginia visitor right now!). It is still being determined whether or not she qualifies for IRIS at this time, since the freeze went into effect approximately 2 weeks after she moved there. If the state of Wisconsin determines she hadn't been there long enough before the freeze to qualify right now, hopefully she will then go onto the IRIS waiting list. We can only hope it won't be a 10 year waiting list like the one she was on as a Virginia resident.

Very thankfully, Shepherds has awarded Daniela a generous scholarship, as it has many of the "out of state" and other students who don't qualify for IRIS. We are so grateful to them for this great blessing. We still hope IRIS will be a possibility eventually so that the scholarship money granted to Daniela can go to other students.  This funding, where-ever it comes from, will mean that my husband and I can reserve some funds to help her in the future as, hopefully, she graduates and moves into a home of her own. Our goal is for her to gain as much independence as possible to live and work where ever she chooses to settle down. We'll, of course, be here to help her for the rest of our lives - it's when we aren't here that we are working towards. Isn't this what all parents are working towards? Some of us just need to give a little more guidance and set up a few more safety nets! Being part of the Shepherds family is the safety net which gives us such hope that all of these goals are completely within her grasp.

Anyway, we are off to Wisconsin next Thursday! Excited doesn't begin to describe our feelings. Now we can only hope that one nasty hurricane doesn't interfere with our plans! We are thinking good thoughts and saying our prayers for everyone who will be effected by this horrible storm. Stay safe out there across the Eastern Seaboard!!!


Tina and Daniela

Wretches & Jabberers 2011 Theatrical Trailer

We have added the trailer from the movie Wretches and Jabberers to the blog. If you watch the entire video, at the end you will have the opportunity to watch more videos from and about the movie.

We encourage you to watch! (For new readers, read post about the documentary which is 2 posts down) I hope you will all look into purchasing or renting this movie, especially those of you who are teachers or involved with any school!

love,

Tina and Daniela

The 2011 Convention of the Arc of Virginia - Tina's Perspective Part 1

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

Arc Convention Part 2 - Wretches and Jabberers

From Tina -

As I left off in my last post we were about to attend the screening of a new documentary.

Wretches and Jabberers is the story of two truly remarkable men, Tracy Thresher and Larry Bissonnette. Their journeys in life both began with childhoods in which they were thought, by almost everyone (their families always believed in them), to be extremely, extremely disabled. Both were autistic and nonverbal with no way to reach out to their families or anyone else whom they came in contact with. Larry spent his youth in a grim institution where he never received an education. Tracy's education, even though he attended school, was extremely limited. Both were aching and angry at being trapped in bodies that would not allow them to express themselves. Then, by some sort of miracle twenty years ago, both were given the gift of language. They were given devices to type with and the assistance of caring people to help give them a voice. Slowly, their brilliant minds were revealed to the world. Their voices also revealed - surprisingly - compassion, poetry and love.

Larry and Tracy eventually became fierce self advocates and staunch advocates for other individuals with disabilities. They had and have a strong desire to mentor young people. Several years ago an award winning film producer offered them the chance to tell their story as they traveled the world reaching out to others. Wretches and Jabberers is that story. With a haunting soundtrack by J. Ralph (which features many famous artists), it is a film that sweeps you into another world - a world in which your perceptions of disability will be forever changed. The overriding message - "Presume competence" - will always be with me, a part of my soul.

Filmed by the Academy Award winning director, Gerry Wurzburg, in Vermont, Sri Lanka, Japan, and Finland, the landscape is viewed through the poetic typewritten words of the heroes of the film along with the calming assistance with their longtime noble guides Harvey Lavoy and Pascal Cheng. The film was sprinkled with sarcastic humor layered with poignant thoughts and visions about life in a world where individuals with disabilities are marginalized. We meet young adults facing their own struggles who are given new hope in meeting these two unlikely middle-aged men. We find out that Tracy is extremely spiritual and that Larry is a talented artist. Their most important message - to look much deeper than the outward presentation of people. When the documentary was over Daniela and I, along with the rest of the audience were momentarily speechless. All around the room of 4-500 people, I saw people wiping their eyes, that is, as soon as I wiped my own tears away. As the lights came up there on a podium at the front of the ballroom sat Harvey, Tracy, Pascal and Larry. Even though we knew they would be there, it was still a bit of a shock. Daniela shouted out "Mom, look! There they are!!!

For over an hour, the four men sat patiently while the audience asked questions. Both men typed their answered diligently - their words even more astounding in person than they were on film. Larry's comedic timing was brilliant. Tracy's solemn facial expression was often at odds with the excitement he felt and the warm words he typed. The fact that Harvey and Pascal, two brilliant and educated men in their own right, are able to check their egos and allow the two other men to shine was also very moving to me. They all received a standing ovation, of course, at the end of their presentation. I, personally, could not sleep that night. I felt too much emotion at what I had just experienced. Daniela was changed as well. We both knew we had experienced something we would never forget.

The next morning, the four men held another session (minus the film) to a packed crowd. We were thrilled to hear more from them, including more about their backgrounds and follow-up videos made after the movie was filmed. (available on the web-site). Daniela had a chance to meet, and have her photo taken with, Larry, Pascal, and Tracy. Tracy reached out to her (after I briefed him on her history and goals) and offered to stay in contact with her. This meant the world to her and I hope they are able to do this. He is a wonderful mentor for young people, regardless of their level of abilities.

Daniela asked the last question at their presentation. "Was it difficult to learn to communicate at first?" I was in awe of her bravery in standing up in front of so many people. They each answered her. Tracy said that "It was like climbing Mt. Everest, but well worth the effort". You can read Larry's response on a photo on Daniela's post about the conference.

I highly recommend that everyone buy or rent "Wretches and Jabberers". I think that it will change who you are inside and you will never forget it. It should be required viewing in every high school, middle school and college. I plan to lobby for our local schools to show it this coming year and urge you to do the same.

To sum the weekend up, this was the best conference I have been to in my entire life. I wasn't bored for a single second and had a very hard time choosing which sessions I wanted to attend. I truly look forward to the next convention. Jamie Liban (executive director), her staff and the other people from the local chapters who put this together should be extremely proud of themselves. I am so grateful to them for the wonderful weekend Daniela and I had together!

Daniela, as I said in the previous post, became a poised adult who I barely recognized. She found a new inspiring community that she aspires to be like. At the end of the convention, several Arc leaders, including the impressive Jamie, came up to me and told me how impressed they were with Daniela. They think she will be an up and coming leader in the Arc movement when she graduates from Shepherds. (I happen to agree with them).

I am just so embarrassed that we have not truly been involved with the Arc before now. They are responsible for so many of the positive changes in the lives of people with intellectual and developmental disabilities. Well, we're on board now and very excited to help, in our own small way, to make an impact.They give me much greater hope for Daniela's future and the future of all young adults with ID and DD!

All the best,

Tina


PS Be sure to read Daniela's account below!!

My trip to the 2011 Virginia Arc Convention!

The first night they had a party on the beach.This was at Virginia Beach. I danced with my new friends.

Here I am with my new friend Quntia Grummell. She lives in Newport News.

This is Alison Barkoff and Aaron Zisser with the U.S. Department of Justice.They fight for the rights of people with disabilities all over the country.

This is Shawn Kirk. He is the President of a great self advocate group named VAULT

This is Maggie and another new friend from the group People for People.

More people from People for People and Diana ( in red) from another great group People First.

This is Harvey, Tracy, Pascal and Larry. They showed us their movie, Wretches and Jabberers. It was really, really good. I loved it. Some parts were funny and some were sad.

Larry and (in red) is a really good artist. He uses his hands to paint.

Here Larry and Tracy are typing and what they wrote showed up on the big screens.

I got to meet the stars of the movie! It was exciting!! Tracy gave me his card and is going to stay in touch with me!!

I asked a question in front of the very big crowd. I asked, "Was it difficult to communicate at first?" Tracy said it was like climbing Mt. Everest, but it was well worth it. Above is what Larry's answer was. My mom thought I was brave to stand in up in front of some many people.

This is Jamie Liban. She is the Executive Director of the Virginia Arc. She works very hard for all the people in Virginia with intellectual and developmental disabilities!

I had a blast at the conference. I met lots of new people and I learned alot of new things. When I graduate, I want to come back and be part of the Arc. I want to start my own group of self advocates here in Gloucester!

In two weeks I will be in school in Wisconsin. I told everyone at the conference about Shepherds College. They thought it was really cool!

love, Daniela

Shepherds College update - delayed start until Sept 2

From Tina-

For those of you who are thinking that Daniela must, by now, be at school in Wisconsin, I thought I would give you an update -

About a week before we were due to fly to Shepherds for the orientation, we received a phone call from the college, saying there would be a delay in the start date until the second of September. This, of course, was a big shock to all of us, but after the school explained the reason why, the delay became very understandable.

In every state, there is a program for people with intellectual disabilities called "medicaid waivers". Most of you who are familiar with the world of disabilities know all about this program, but for those of you who do not know this term, I'll give you a basic explanation (you can google it for a more detailed explanation).

Waiver programs were developed to promote individuals with disabilities, both children and adults, being able to live in the community and not be institutionalized. There are various types of programs for different populations and each state runs their program differently. Here in Virginia, there is approximately a 10 year waiting list for the ID (intellectual disability) waiver. Daniela was on that list. The funds help to support services to keep individuals in their family home or, when they become adults, in a home of their own. This can include many types of services: such as vocational services, life skills training, minor services such as weekly visits or 24 hour a day supervision. While this sounds expensive, institutional care is much, much more costly.

Shepherds College has been an incredible provider of waiver services. It's program up until recently has fit the guidelines and a number of the Wisconsin resident students costs were covered, in varying amounts, by the Wisconsin waiver program (called IRIS). Wisconsin, has ranked in the top 10-15 states in providing excellent services tho their residents with disabilities. (Virginia is ranked at 40.....)

This summer the Wisconsin legislature has decided to put a 2 year freeze on new participants. This is devastating to many families in Wisconsin. But for Shepherds students already receiving services, there is a different problem - somehow, the program has recently been denied as being considered as a provider of services for the IRIS program. From my understanding (and this is very confusing) someone has decided the college students are being "institutionalized" because they live together in the dorms and apartments..... Therefore they are not living in the community. Does this mean all "regular" students living in college housing are institutionalized???


The college is working very hard in this month of delay to get the program reinstated to receive IRIS funding. There is a great deal of support within the state government and legislature, which is good news. The college will find out by the end of next week whether they were successful in their efforts. If they are not, sadly, a number of students may not have the funds to continue in the program. The college offers scholarships, but those funds will be very strained by this major loss of funding. This situation would be devastating for affected students and their families. Shepherds College is one of, (if not THE), most innovative and amazing programs in the world helping young adults with intellectual disabilities to live the most independent lives possible. The graduates will be much less likely to need expensive services to live in the community, whether in Wisconsin or anywhere else they live. Please send your prayers and good thoughts that ALL the students will be returning to school next month. The college is also soon going to add a place on their web-site that will accept donations to the scholarship program. (you can donate now as well - if you are interested, email me privately and I'll tell you how.)


I will update you all when I find out the outcome of the college's efforts. Daniela is busy now with a packet the college sent to help her transition into school. She has to keep a record of a number of daily chores around the house. She is expected to read and exercise for a certain number of minutes each week. She also has cooking assignments (She made us a delicious roast with potatoes and carrots tonight!!)

The college was kind enough to reimburse for the fees required in changing our flights so we are rebooked and ready to head to Wisconsin again next month!!

All the best,

Tina