The Arc Convention at Wyndham - Day 2 of 2

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Mornin ... mornin ... We’re back home now! I think we got in about 7 pm last night. We had a chance to IM for a bit with Vince and Anna. It was a nice welcome back! Thanks guys!! We figure we’ll write an email or two as well. Special "pleasures to be getting to know you" go out to Tammy. We want to thank you for your generous spirit! We’re very happy with our life for the most part, and exceptionally pleased with the company we’re keeping. Such a neat community!

We’re still warm and fuzzy about the whole couple of days. I think that Casey, Jamie, and Kate were all out last night with Dr. M. Not so sure Casey appreciated the meetings, but Jamie and Kate seemed happy ... maybe a little tired though.

The day pretty much went as we sketched in yesterday morning. We met a few other ARC members throughout and had a sense of not being by ourselves. The main thing for us though was the meetings and being able to talk to the people who presented them.

The one by Tony, the executive director of the Illinois ARC was pretty cool. He was a very good speaker and terribly enthused with the work in front of the organization. He gave extremely good reports of what was happening at our capitol, plus he was able to give a good presentation of the ARC’s cause and the couple of bills they were helping to support. He was a down to Earth type guy.

We did ask one question out loud. It was in respect to the new "Fee-for-Services" that the ARC supports. We’ve not been able to obtain financial support through this to be paying for the new folks that are just getting out of high school. With 12 new intakes this year ... it is a pretty substantial problem. He allowed that we could talk about it later, and we did.

I think the complication was new to him. I think we’ll talk to Sr. Tess and offer a follow-up email/letter re-addressing the issue. Either it is a issue because the system isn’t working effectively, or it really hasn’t been addressed properly in Springfield. We’re willing to go through official channels with this one though. As it turned out ... after the session was over, we realized that Andrew, the director of the Chicago Networks was in the audience. Hmm, don’t know whatthat’ll mean. Sure we’ll find out though *goofy grin*.

The next meeting wasthe one on inclusion. This was a big meeting and the speaker was a mother of a 12 year old son with developmental disabilities. He is fairly low functioning and has medical problems as well as being blind and deaf. We felt a lot of anger from this mother, but for all the right reasons. She talked of her battle with the system to include her son in the normal classroom and life. She’s won some battles! I thought this person had a whole lot of constructive things to say.

I’m afraid she might have turned some of the audience off though, because she was very real in going to the heart of many outstanding problems. It could have been considered very overwhelming. We made sure to say something affirming to her afterward, especially when we realized a lot of people weren’t going up to respond directly toward her. I’ll always remember the strength and fragility in looking directly in her eyes to be telling her she’d done wonderful work in the field. We meant it with all our heart...

There was another luncheon speaker. It was an 18 year old girl with developmental disabilities who had gone through the school system and was very happy with the outcome. We didn’t question the thought when it was mentioned later she’d been on the debate team too! She had written a very good report and her being able to speak up for herself and "the cause" was very encouraging.

The same goes for our lunchtime companionship. We sat next to a younger lady and "her charge." I would guess John to have had mild mental retardation as did the guest speaker, but he also was wheelchair bound and appeared to be dealing with complications of cerebral palsy. He was of extremely good interest as was she. She talked of living communally so that each could play a part without interfering with the others’ growth. They had been friends for quite a while.

John was interested in becoming a politician. He was at two of the meetings we attended yesterday and was very, very good at presenting himself and following the issues with insight in hand. Just loved it!

The last speaker was the University Professor (young female) who ran us through a quick session called State Legislative 101. As would be the case, Tony showed up and sat in the meeting as well. The professor knew her material, but was young to being involved in the cause. She accepted Tony’s authority as an add on. Hehe, she had a lot to contend with.

In the audience there was another gentleman with MR who was being fairly abstract and thought to ask general questions on life at every opportunity. He was welcomed into the session by the professor even though he was off-topic. I give her a lot of credit for that. Him too! Most of the people at the convention didn’t have MR, but it was encouraging to see represented those who did. They added concretely to the program.

So, that’s pretty much it as far as the meetings go. As far as major points to be remembering ... we haven’t got this all down satisfactorily yet. I really, would like to see the group at the Center involved in these issues. I would be thrilled if any of them were able to know and care as much as John. In his own respect, he was a brilliant young man!

The two issues that are at our capital now involved getting the money promised as matching funds from the federal levels to support directly disabilities. Our legislatures want to throw that money into "the big slush fund." That fund goes to out to everything and everyone, not to people with disabilities, even though that is the intent of the federal government.

The second issue was to get new money into disability services. The dollar amount is 163 million. It is broken down into supporting the enrollment of people waiting for some kind of service; money for supporting centers for independent living; money to increase community living options (there are 30,000 caregivers over the age of 60); a cost of doing business increase of 4%; new housing into the CILA programs (our group housing); transportaton to jobs, schools, training, church or recreation; housing for people with developmental disabilities AND mental illness; increased respite services for the families; employment initiatives; and money to assist the transition in our business from grants to fee for service.

Right now Illinois ranks 47th in spending for people with developmental services. 31rst for spending on people with mental illness (21% of our Center’s population). We are 4th in amount spent on institutionalization (a process that should be stopped altogether) and 50th in the nation in regard to getting folks into regular classrooms. Pretty pitiful all told.

Yep, yep ... time to get our people involved.

There is a meeting coming up (an expo) that will also have meetings involved in legislation. We hope to be at that one too. I think there will be four hour long meetings. Don’t you just love the Internet. Here are the meetings, we will attend on May 18th to supplement the one’s we just had.

Life Span Michael Kaminsky, Director Illinois Life Span

Life Span is the first central resource for information and referrals to link people with advocacy services in Illinois.

Learn about the services available to you!

Creating Positive Public Policy Tony Paulauski, The Arc of Illinois

This session will include tactics that you can utilize with elected officials. You, too, can learn to change public

policy!

Our Children’s Futures: Advocating for a Brighter Tomorrow Charlotte Cronin

The Family Support Network advocates for programs and policies that support children and adults with disabilities

so that they can live with their families and in their communities. Learn what supports for people with

disabilities look like in Illinois and how we can work together to improve those services.

Make Your Vote Count—The Voting Rights of People with Disabilities Stacy Yusim Equip for Equality

If you’ve felt, "I’d do things differently if I were in charge!" then you can make a difference by voting.

I really want to be in a position of training in self-advocacy at a legislative level. *Giggle* At this point, we’re also kicking ourselves for not getting the number of John. Would really, really love to have him come and give a presentation to the our Thinking Group. Shoot, maybe through someone at the ARC? I’m pretty sure he’s fairly well known. I know he’s joined others who’ve gone down to Springfield.

Brings us back to home issues. We just got off the phone talking to our friend. He’s a little uptight, because the CARF people from his other agency are coming back to talk to him about his workshops. Paperwork shtuff. Hehe - he’ll be ok...

But, in the process we initiated a conversation of our Center. We’d stopped by last night to pick up our medicine and was given an earful by Sr. Tess. The individual’s family that had been upset that we couldn’t diaper train their daughter were at a meeting to "get out" the issues with Sr. Tess and the other Q. Guess they were pretty hard on the Center and they brought another agency that helped them support their claims. Sr. Was still very angry, theother Q. in tears, and our friend got angry as well.

I think we’re more angry at the thought of a crease in the Agency’s good reputation. I would guess that a few of the complaints were warranted. One of them that had bothered the family was that they didn’t seemto think our staff seemed happy enough. I’ve looked at our staff including Sr. Tess and thought the same thing before. I also don’t think that the staff in charge of the lower group does much with the individuals and most likely the other Q is coming off as presenting herself as more than should be chewed. We will still support our agency, but would take heed in some of the criticism.

There is so much to be doing for the clients. Maybe not so much with toilet training. We figure in 21 years of school and home if the job wasn’t done, it would have been to much to expect of our agency. Specifically, because its not something we would offer as one of our responsibilities. We assist when necessary and work toward independence, but we claim no miracles.

The family had built up their anger though in management, not the DSPs. What came out was that they had actually asked both the DSP and her substitute to quit our Center and work privately for them and their daughter. I don’t think this is exactly kosher, but respect that offering choices isn’t necessarily a bad thing.

*Sigh*

At this point, it is more like, what’s next, what’s next. Our mind is much too busy to focus on the general reading we are going to want to do the rest of this long weekend. I want to somehow solidify our position. Maybe this would mean spending some hard work time going back to the Outcome report. I know that we weren’t supposed to be working on it, but that was more in regard to our work time, not our free time.

In general, I think the way to progress is to make our organization the best that it can be. I would like it someday to be a model that is funded by grants for special projects. This is where the Thinking Group, Leadership Group, and Self-Advocacy Committee come in. But, as well the program as a whole and the next set of goals our clients will be working on after the first of July. Need to really get a handle on that.

I think what we’re going to need to do ... is somehow figure out what their abilities, strengths, needs and preferences are really showing us and how that all gels with the programming being offered. I think we are fighting an uphill battle with Sr. Tess., but we’ll keep pushing our points. Basically, we figure she’s leaving parents in the dark ... or to the impotence of the other Q. I don’t mean to seem so above those of my peers, but there is realities to contend with.

There’s the microcosm of the Center’s day-to-day life, and there is the bigger fish bowl we see when we are out at meetings or reading from books or Internet. This bridge has to be built, or it will eventually demise the business. We say this especially with thoughts in mind that Sister is 76 and chances will be ... she won’t have too many more years with the agency. If we are to survive her retirement personally and professionally, we need to build up an organization that will be too valid for the other sister’s to dismiss into oblivion. At least, that’s our general impression of things.

So, with that, we’ll excuse ourselves for a little bit. We are aware that we have a doctor’s appointment today with the surgeon for the hernia. Might have to do some figuring there. We don’t recall what we did with the paperwork, but am pretty sure the appointment is at 2 pm today. Hmm... Maybe we should go down and check the trunk? Yep, yep ... better be doing something. :)

Hmm, OR, maybe we'll take a nap!