I volunteered to volunteer at a shelter at the YWCA building. I went and when I got there I could not get through the front door. The door was locked and no one new which key it was. I was in the freezing cold for 20 minutes and was ready to go home. The reason I'm upset about it is I could have taken care of the issue on my own if I had known ahead of time. I'm not new to the problem of a locked door. I wish people who want me to be included admit that I should be the one to check on accessibility of a project because it's a special issue. It a weird dichotomy because people mean well by involving me but don't admit that I should be the one to make specific preparations. How do I get that across to others without hurting them? People need to feel more comfortable admitting potential problems.

I should be getting my new van next week. It's actually never been done so quickly in my life! The company is in Norristown and they are really committed to doing a good job. I have to use a larger wheel so it will take some getting used to so I am going there today to practice. It will be hard to leave it since I know it's ready for me and yet I'm not allowed to drive till I'm officially signed off by the York OVR counselor. Furthermore, the one I have been using has stopped working. I was able to drive short distances for awhile even though there were gear shifting problems. Yesterday I went outside to drive it and the gear would not get in any gear other than park. Actually that's the most important gear.

I have decided to take my knowledge, my experiences, my writings, and my interests and do Infobility differently. I will offer to consult on existing projects via email because I can be helpful to
companies. I have already started to market Ride Away and that realizes my dream of empowering people with disabilities to improve the quality of their lives. I will be contacting 50 rehabs and 7 CILs
I will not only make them aware of a great company but I can also walk them through the entire OVR process. I wish I had someone to provide support to me each of the 4 times I went through it.

I'm involved in a disability initiative with Millersville University. I also took part in a conference on disability and religion. The issue is really starting to gain momentum it's like a "hot topic" these days. It's so exciting to see people interested just because they want to learn. There is so much to be done and it isn't just with employment. I am getting in on the ground floor. Dauphin County is even going
to start a county wide initiative in which I may get paid to present awareness programs, analyze jobs,
and create clubhouses for this population. I am coming alive!

My first love, regardless of how many other types of jobs I perform that have nothing to do with this, is the following. 1) Creating educational programs on disability for employers, schools, small groups, etc. 2) Creating jobs for individuals with developmental disabilities. A person can not change the essence of his/her being. Those 2 goals may soon be realized - that would be like making Infobility into a business. It should have been years ago but better late than never. There are no words for how fulfilled that would make me feel. I have never ever given up on that reality because I just couldn't.

New outreach initiatives are being tried and in time they will show results. I'm going to be sending 53 monthly newsletters on a variety of disability topics. I met people at the Lancaster Expo, sent out my first issue, then followed it up and received some positive responses. A program is planned for the 25th and the attendees will be 13 new people. Perhaps this audience will be more receptive. Rather than giving up I'm trying different ways.  

This will be the last Next Steps meeting on general issues such as resources in the community. I am now going to focus on something nobody likes to think about let alone talk about. Future residential issues for individuals with developmental disabilities. There are so few options and so few people who are willing to entertain the issue, that I will just work with the ones who do and hope that others will follow. This is an even less interesting topic but I will make it worthwhile because it is.

I just spent 2 days at the Lancaster Disability Expo and I really enjoyed both of my experiences.
I may have some job prospects, I may have developed some friendships, and I am going to start a
newsletter again with all of the vendor cards I received. My logic is that each of the recipients will have a multitude of their own contacts and most will share this with them. I also learned that I could create a free Infobility website on blogger not just this journal. I would like to help arrange some of the transportation for next year so attendance can improve.

ADA Day seems as though it will work out nicely. I've done these programs so many times with no results but this one should be very different. It's at a good location, it's being supported by the Camp Hill CIL, and I am having big name speakers. Also I have done so many things wrong that the only thing I haven't done is do it right! I'm trying to incorporate residents from the community by asking them to tell us their stories of discrimination. That should interest them and encourage them to work with me on developing strategies to succeed in the marketplace. I'd love to have a follow up activity. 

trying to help

I want to apologize for my latest entry (I will delete it) I organized a vocational program for parents of adult kids with challenges. I thought I was very informative and wanted to give other parents and kids the opportunity to experience it. I mentioned that many parents are skeptical of agencies being less than helpful to consumers who have higher functioning. I see how that can be taken in an offensive manner but I was not generalizing that to everyone. These programs are not for myself though I can identify with the struggles. The purpose is to fill a need that is out there for some.

It is understandable that I have an overprotective mother; however, enough is enough, how does she think I manage the years that I didn't live with her? It's actually quite demeaning to experience her running after me with a rain poncho and much much more. It's unhealthy for me as well as for her and it will result in my sister, who has a brain injury, being completely lost in life after mom dies. A parent's most important job is to give their kids the tools and then teach them how to use them. I am actually proud of my fierce independence.

I have my 3 summer programs for "Next Steps" gatherings as well as an additional program to comemorate the 23rd annivesary of the Americans with Disabilities Act. I took people who were not participants of the panel last week but had good information to offer and asked if they would speak. I even got someone who wasn't given approval to attend, to speak. Hopefully the person will mention the gallery that displays consumer's art work. I may finally get some validitity for my projects.

I'm about to write notes to all of the participants who took the time to attend and share their struggles. I hope they will keep with it throughout the summer. I plan to develop 2 projects we discussed but I hope people will feel comfortable enough to offer ther own ideas. I believe that supportIVE groups are best so we do more than vent rather have something concrete to show for our time. I want us to be taking the next steps.

The meeting went well, there were 40 parents in attendance. People were concerned about their kids "falling through the cracks." Too high functioning for services but not high enough to function independently. I suggested 2 projects- compiling a manuscript of stories to show legislators and forming a bartering group like communty exchange. I think people would be receptive and I don't want to lose momentum. I would like meet 3rd Wednesdays of the month in the Manheim Library.
The next 3 groups could be in a house or park or restaurant or church. I just want to keep this moving.

I have been super busy fighting OVR with both barrels, the director just won't give up. First she tried to forbid me to schedule and pay for my own evaluation now she's requesting that I give her carte blanch into my personal background (social secrity numbers, bank account, etc)! She lost round 1 since I proved that a consumer can do an evaluation, it saves them money and I don't have to deal with OVR so they should be fine with that. Now I was told I must sign a release of information form. She decided that if I can afford to pay for the evaluation $100+ I should be able to pay for the purchase and installation of the hand controls $70,000. I wanted to prove my advocacy skills to help people with disabilities and now I'm given the opportunity to do just that- I am the example.

The article on my disability program has been published in a county wide newspaper and I'm getting a few replies. I've also filled 25 slots with 2-3 people each so I will have a huge list of prospects for Rose when she comes back. Hopefully we can then move forward with the hiring of me. I wrote a letter plus 2 full pages of all I've done since April 1 when I was denied the job at Hoffman Care. I wrote to my senator, a lawyer in my temple, and the lady I met at the soap opera luncheon. She helps people who have diability issues. There's got to be someone out ther who has the power to help.

"Round Two" with OVR and the van process. I have an appropriate job now and so I'll be eligible for my evaluation. I did most of the work on my own- I explained to the evaluator the equipment I need, I explained to him I've been driving for 20 years (OVR never told him), and he told me that he is in this area often (OVR never told me that) and will meet me 1/2 way if that works for him. This information would have taken weeks to research and compile. Furthermore, they would have charged for a full evaluation when I only need 1/2 of one. Next, I'm hiring my neighbor as a professional, private negotiator. She's perfect cause she'll speak calmly but firmly. No consumer ever does that!

Last night the educational program at my Temple was about the "Book of Job." We touched on our levels of faith in God during hard times. The trip to Mississippi, in which people still devistated by Hurricane Katrna, was used as an illustration. These poor people showed pride in themselves despite how bad their situations were.  The consensus was that people always have that little spark inside regardless of how they look on the outside. In my experience it isn't always so. Not only do people not get the chance to show their spark, they often don't know what their spark is.  Paid staff are so overworked and underpaid (even parents) they don't see the specialness in the people they see every day. The problems are easily visible so that is what is focused of rather than the other parts. If the good was nurtured, the bad would decrease on its own.

The disability program is growing and some key professionals are "signing on" to the idea and are "on board" with my concept. I attended the Dramability event because the director is participating in mine. I met a few good people- parents with kids who are in the program. The task force is sharing it with others and the newspaper article hasn't been published yet. I feel like I'm on my way and for the very first time in my life I feel like I'm going to make a difference in the world. 

My disability program "Next Steps" is full steam ahead. I was interviewed and the reporter asked to speak with the participants also. It may or may not result in a job but surely will widen my contacts. I did mention my needs to the reporter, hopefuly if mentioned it will be in a tactfiul manner. I would certainly not say anything during the program. I do think that I will benefit regardlesss because I believe that if you do a good thing for others it will come back to you. I may even get the oppportunity to start a Community Exchange program, as I've been wanting to do for months.