Today my blog will be about a legislative meeting update. As you guys know, I have been very, very busy with my legislative meetings. In fact, Thursday I went to a breakfast where we presented several key issues impacting individuals with special needs, their families and the organizations that support them. There were a several legislators there and they all had different opinions. At times the discussions were intense as Paul, the CEO of The Arc Alliance presented complicated details. As part of the larger group I was able to present the issues that are specific interest and concern for me and for many students in similar situation who are unable to speak for themselves. As these meetings continue, I have to say I am getting more and more comfortable and confident in presenting. I really enjoy telling my story and it’s not just because I like to talk it’s because these issues are important. My grandparents went with me to the breakfast, and as grandparents can be, they were very proud of my involvement. I actually have another appointment on Wednesday and I am excited to present these issues and hopefully provide a personal perspective to the concerns.
I’d like to give a special thanks to the Spring-Ford school district for allowing me to travel. I sent the superintendent a thank you letter, but now I’d like to thank him in blog form. It’s because of his generosity that I’m able to tell my story.
At the two breakfast meetings I have attended there has been a lot of food. The food was delicious, with bagels, pastries and juice. I like bagels and pastries so I was okay with that. More important than the food is our discussion and when I speak I focus on the lack of funding for individuals and the organizations that support us. Funding is a tricky topic and has a lot of related pieces. I however, present to them a specific picture of how the lack of funding impacts me. Typically I say, “Fact: do you know that someone providing in home care makes less than a cashier at BJ’s? Let me give you a personal story to put things into perspective. (I have a visual aid that goes along with this speech) Imagine you were a single mother of two children. Taking care of two children is not easy, let alone a one-year-old and a 10-year-old. Then I go on to say that this woman in the picture was my aide for a year. Periodically throughout the year, I would look into her eyes and wish there was something I could do for her. At one point I asked her, why you do this job? Her response was, and I quote, “I don’t do it for the money, I do it out of the kindness of my heart.” I then go on to say that it’s people like her that sacrifice to give people like me a better quality of life. The least we can do is raise their paychecks.” The amount the state provides organizations to serve individuals through Early Intervention and Supports Coordination have not been increased in like ten years! How do they expect organizations and the people that work there to survive?
Sometimes there are other people with special needs and their families in attendance. At this meeting a young man spoke on something that is called the ABLE Act. It’s basically a way for individuals and their families to save money without losing support. It’s crazy, but I’m not allowed to have more than $2,000 or I will lose my support. The ABLE Act (federally approved, but not yet approved by Pennsylvania – ugh!) allows me to save $14,000 per year for miscellaneous expenses like upgrading my wheelchair, paying taxes, down payment and rent. It’s like the college savings plan but for individuals with special needs. Legislators need to approve this by Nov. 30, 2016 or it goes back to ground zero!
This young man’s mother also spoke a little bit on OVR, the office of vocational rehabilitation and how it is hard for her son to get a job. I know that sooner than later I will be working with OVR so I paid close attention. People with special needs are looking for employment that is meaningful. Unfortunately it seems most jobs are less then 10 hours a week, so people need to piece several jobs together and that’s not easy for the person or the family. OVR’s job is not easy but we need to work on building opportunities for individuals and businesses.
Needless to say, these meetings are very important and I think they are going great. I can’t wait to do more! This is something I have been really passionate about, and I like the fact that people are not looking at me and going, what the heck is this guy thinking? They all have been very receptive to what I and others are saying. If they were not, I would stop right away, but that is not what they are doing. These people are taking the time to hear what I have to say, and they are listening intently and that makes me feel really good.
Now, onto a little bit of what is going on in my personal life. I’ve been really busy in my personal life. I have been sending in a bunch of emails and mainly just preparing for these meetings. I’ve talked to so many different people over the last couple of weeks, it is amazing. It’s hard to keep all of them straight, but I have had so much fun. I am also having surgery on my feet at the end of March. I will be fine, but I will be in casts for 6 to 8 weeks, luckily I will still be able to go to school and The Arc Alliance. But keep me in your thoughts and in your prayers.
Easter is also coming up, so I want to know what are you guys planning to do for Easter? I’m not sure if I’m planning to do much of anything besides cook and eat food. So basically, what I do every day. What are you guys doing as far as entertainment goes? Have you seen any good movies? The Batman movie comes out March 4th. Are you going to see it? I can tell you, I’m not. Do you have any more suggestions for me to write in my blog? I am open to any topics.
That’s about it for today. I will see you next time and remember it only takes one person to change the world.