Hello! I know it has been quite some time since you last heard from me. Too much has occurred and I had to let some things slide to keep up.
I LOVE the DISRUPT T-shirt…and I’m waiting to get one along with the new book. Every time you create these things, I can take them and use them in the communities that I work with. Keep up the good work(s)!!!
So what have I been up to? While addressing my husband’s need to stay up to 1 a.m., having to be up at 7 a.m. to get daughter to camp, juggling severe lack of sleep and immense loss of daytime work hours…and….the list goes on. These are the highlights:
DISRUPT #1: UPDATE: Long Term Disability (LTD)…
For history on this please see Have Disabled Spouse Will Not Divorce from earlier this year. There have been several conversations and many phone calls since that post. The Congressman’s office has been most helpful. We are not finished fighting this issue yet but here’s the tentative place we are at (via verbal conversations):
Apparently the Social Security Benefits (SSB) my daughter and I receive are pulled directly from my husband’s SSDI account. If I give up my SSB then I should be able to earn (unlimited) salary and we can participate in contests that would issue 1099/98’s etc. And my response was, What about putting this to pa…”Do NOT (said the Congressmen’s office interrupting) do anything until this is on paper.” Reading between the lines: Aapparently the LTD doesn’t want to participate. Right now there’s supposed to be a call between the State Insurance Commissioner (our advocate on the call), the LTD and ourselves before this letter occurs. We’ve already been waiting a week for this step.
So what would I do? s I spend so much time doing what I do, with EP and Disabilities, I was thinking of going non-profit. But I would need an investor to begin with and some way of negotiating a salary. I’ve talked to a friend of mine who says this is doable. But I don’t know how to make it happen. My strength is being out in the the community. So if anyone has thoughts I’d appreciate them. In the meantime, I have no regrets pursuing this “Disrupt.” This will benefit someone else in addition to ourselves.
DISRUPT #2: Emergency Preparedness
I’m sorry if this paragraph will sound a bit cryptic. But for now it has to be. For over six years now as you know I have been advocating for equal access to emergency management design for members of the Disability, Elderly and similar communities. At about the same time I embarked on a project as it affected hubby and I on a very personal level. We’ve recently learned that apparently our story has taken the interest of many in “very high places”. Today, some of what we first faced is now written into the National Disaster Framework and many other emergency management design programs that exist that now include and have to account for those with additional needs. I’m sorry I can’t say much more on this but know that every time you state details about your unique challenges, I carry those with me and use them to help both you and I. Keep them up and I’ll keep advocating for you as well. I’ll post on this when I can.
DISRUPT #3: Get Ready Gwinnett!!
Trish & Robert – Thank you for the Helmet!!!!! Huh? What is she talking about? I sit on the county emergency preparedness committee and September is National Preparedness Month. This year’s theme is to “Take the Pledge to Prepare”. (http://www.ready.gov/). I have already registered there and am participating in the National Preparedness Coalition. (By the way, they love questions!) So being the co-chair of the Get Ready Gwinnett! Emergency Preparedness Resource Fair, everyone is welcome and our theme or focus is on populations who will need additional assistance in disaster situations. One of the things I wanted to do was an “experience course” so that people who come through the exhibit section could get a feel for what others might have to go through on top of the disaster.
I don’t know if I’ll be able to pull that off due to lack of assistance coverage for that day. So instead I’m going to gear it towards a museum of sorts. My co-chair thinks we can still make a game of it and we are going to try. The “helmet” is going to be used to educate on epilepsy. I also have a transfer board and a walker that I can donate. We will be looking for other pieces to put on display that consumers and/or first responders might not be familiar with.
In the background, I’m working with a dear family friend to design a 508 compliant (user accessible/accommodation) website so those with vision, hearing or epileptic issues can access information as well. I’m very excited by it and will let you know when it’s up. What I’m also learning is that because we are diving into a topic that is usually in the background and instead bringing it to the forefront–the elderly, special needs, disabled, etc–that we are doing something that probably hasn’t been done before. As usual I’m welcoming any thoughts you have that you think I might be able to use there. (Wish I could have Caregiving.com there!) Why work so hard on this? Change doesn’t come about unless challenging questions are asked. I intend on challenging as many people as I can that day and I am working with a great group of people who feel the same way.
Baby Sized Disrupt #4
Our little “Twinkie” by His grace was given a scholarship (via network connections I have) into a reading camp which began the first week in June. We knew that our five-year-old daughter was advanced by her actions but didn’t know much more then that. On the first day of camp they told us that she was reading at a 6th grade level. Wow! Proud parent!
Reality!!! What do we do?? So she’s just finished her third week and we are actively praying that she can get a scholarship to attend a private academy. Here in Georgia there’s a 70/30, where we pay the latter but because of the LTD, we have no money for that. So I’m chasing down avenues in hopes that we can get in a proper educational environment.
I have other topics to write on. But wanted to get this one in as this is my (finally!) self created respite time and I’m so glad I took it.
Big hugs to all! I’ve missed you so much!
The Roaring Mouse