What is the Mentoring Connection?
Greetings! I was created with the curse and blessing Cerebral Palsy (CP). In layman’s terms CP affects my motor control in all four extremities, the way I talk, as well as my balance which makes standing and walking a big problem. So what does this all mean? Sure, my parents could have taken the advice of the doctors who said to take me home and love me. They went on to say don’t expect too much because I would most likely be a vegetable. But they didn’t listen! Instead they looked into my big blue eyes and said, “The eyes are the window to the sole. Kate’s eyes are wide open with fierce determination to beat the odds.” My eyes never lost sight of my desire to succeed in life. This not to say that I haven’t encountered a tremendous amount of obstacles and fought many battles.
I feel these components have played a significant role in my success: countless hours of therapies, abundance of caretakers, an array of mobility devices, a mixture of communication devices, different computer systems and access methods, and a magnificent support system. About two years ago, I started “Kate’s Mentoring Connection” blog to share how these key components have and continue to play an important role in my triumphant life. I hope my readers find my blog writings intriguing, inspiring, and encouraging. As well as recognizing the need to have a great sense of humor when faced with a disability.
Debating Leads To Advocacy
November 2020
Recently my debate couch from high school asked me to speak about how my debating skills played a role in my life. So I am going to talk about my adventures and my debating and how it has transferred into other skills.
My sophomore year in high school I had the privilege of being a beta tester for the Prentke Romich Company’s communication device, the Liberator. The Liberator was a computer that helped me communicate when my natural voice wasn’t understood by others. This device opened up so many opportunities for me. I took Introduction to Speech to learn how to prepare a well organized speech since I would be presenting at two national assistive technology conferences that school year.
After I had a successful year with Introduction to Speech and won my high school’s Speech Award at the end of the school year, I wanted to challenge myself even more by taking Debate. My Speech teacher, Mr. Webber, happened to also be the debate coach. He spent a lot of time working up the chain to receive permission for me to use my Liberator during a debate tournament. At the time computers weren’t allowed during debate tournaments. In my case, my communication device was seen as a prosthetic
Taking debate was also exciting because I learned how to come up with arguments on either side of a topic. It was like being the devil’s advocate. Moreover, as someone with a physical disability I am always self advocating for myself and for others using my debating skills. I had a specific opportunity to utilize my debating/advocacy skills first hand when the state organization (now called Texas Workforce Solutions ) tried to deny services based upon a standardized test. As I expected I did horrible on the test which labeled me “dull intelligent”. The state agency excuses my teachers for giving me “my grades”.
I was totally appalled by their decision and immediately wrote a letter expressing my feelings to discuss the results of their findings. Needless to say my high school teachers and other school personnel were furious at their accusations of giving me grades. Needless to say, the Texas Workforce Solutions paid for my tuition and other things I needed for college.
In my case my debating skills turned into advocacy which plays a significant role in my daily life. For instance, I use a power wheelchair for mobility. I have Medicaid for my insurance and most of the time they will deny my power wheelchair. They will send me a denial letter and hope I don’t read the back where it reads, “I can appeal their decision and request a fair hearing.” Most people who receive this type of letter would be too scared to request a fair hearing because they are intimidated by the government. When I receive these denial letters, I am ready to go to the fair hearing and advocate for myself. During these fair hearings, I find it sort of funny because the medicaid representatives, who are usually a nurse, don’t have a case for why they are denying my power chair. The Hearing Officers always look dumbfounded when the medicaid’s representatives don’t have a case and the recommendations are totally the opposite than what I need.
However, there was one instance, I “lost my debate”. During my last years of college, I was finally finishing up my degree and I was taking the courses to become a special education teacher. Midway between my course work, I started taking my practicums. Practicums is coursework in which a student is placed into a classroom to teach. In my situation, I was placed in a self-contained classroom for students who have autism, down’s syndrome, etc. When I was doing my practicum I found it quite interesting that I hardly ever saw the classroom teacher teaching her students. It was always the teaching assistant giving the instruction to the students.
One of the few times that I saw the classroom teacher teaching was when my overseeing professor observed me in the room. The tricky thing was that the overseeing professor and the classroom teacher were best friends. For some reason they had it in for me that I couldn’t be a teacher and my professor gave me a “D” for my practicum. I was so upset because a “D” might as well have been a “F” because a “D” was considered a failing grade.
At that point, I called a meeting with all the special education professors and my mom but I wasn’t able to get anywhere with them. It was pointless. They were in the mindset that someone with my physical limitations couldn’t be a special education teacher. In reality who was more qualified to be a special ed teacher than an individual who had a disability and had accomplished so much.
After I graduated without being a certified teacher I often wondered what my professors told their future students about my situation. Ironically, a few years later a friend of mine had to take a class which was taught by my old overseeing teacher. Sure enough, she told the class my story of becoming a special ed teacher. She was clearly referring to me. She said that she had a student years ago who had unrealistic goals of becoming a teacher. My friend, who was in her class promptly raised her hand and told her teacher and classmates I was teaching. Now who had in fact won that debate?
As an adult, I have been a self-advocate for myself whenever necessary. It has been anywhere from getting a new power chair, a communication device, dealing caregiving issues etc. My most advocacy endeavored has been accepting a job as an advocate for students with disabilities and their families in ARD meetings. ARD are meetings held annually, sometimes more, for teachers, other support staff, and parents and other family members to discuss the student’s: goals, accomplishments, weakness etc. My role is to support the student/families during their meetings. I have to know the special ed laws and statutes in order to best serve the student. This is ultimately the best job I could because I believe I am giving back. It is very rewarding.
A Loooong 2020
July 16, 2020
One of my favorite music groups is the Counting Crows. I love their song, “A Long December” This song becomes my theme song when I am encountering hardships .These hard times seem to drag on forever, such as COVID-19. At the end of May, I thought things were finally settling down and Dave and I could slowly start going to the grocery store, Walgreens, etc. However, we also wore a mask when we went somewhere. I was surprised to realize how so many people weren’t wearing masks. To me it was a given. Shortly after wearing masks, Dave made the joke, “The masks are keeping the virus out and chins dry.” I can always feel my drool building up in my mask. Then when I take it off it’s drenched in drool.
Another factor I have with wearing a mask is it tends to slip down my face when I speak. My attendants are constantly having to pull my mask over my mouth and nose. Thus, it is very well worth the annoyance. It was awesome to hear today on the news the new number of COVID cases in our county are way down. Our mayor mandated face coverings over a month ago and it has made a huge difference. The face covering mandate gives me confidence to go to my much needed medical procedures.
For years I have suffered with back and neck pain. It was a life changer when Advanced Pain Care became an option for me. Prescribed pain medicine isn’t the best option for me, since it causes me to be really sleepy. At Advanced Pain Care they offer other options to help with pain. So, in order to avoid taking pain medicine, the pain doctor burns off the nerves in my back and knees to relieve my pain. At first I was very skeptical of this procedure because it “burns” your nerves but they ensured me the nerve would grow back. They were right, they did grow back. It has been a tremendous pain reliever for me.
As I said the nerves grow back so I have to go every six months to have the nerves burned again. Right after COVID broke out, it was time for me to have the procedure again. Unfortunately, the surgery center where I get my procedures done was closed during the stay at home order. They re-opened in late May but I have been reluctant to have my procedure. .Last Monday, August 10th I finally bit the bullet and went for procedure. It was definitely a new check-in process to meet the socal distance requirements. The new check-in process gave me reassurance that the surgery center was taking the proper CDC measure to protect my health as well others. On a side note, my attendent and I had a good laugh when the nurse asked if my attendant was my mom. We chuckled and said, “We are the same age and she was my attendant.
In closing, I hope the pandemic will continue to become under control and our country can be united again. These days can often lead to depression but try to think about the plans you have for next year. Scientists and the medical field will find a vaccine for COVID sooner than later. From my perspective, maybe we needed some type of “reset” in the world but I don’t think we have gotten there yet. Humanity needs to come together!
My New Normal
May 18, 2020
I’m a little late posting this blog
Around March 12, 2020, would be “my last day of my old normal lifestyle’”. It was when I had my first meeting to start the process of getting on Home Community Services (HCS). They came to our home to evaluate me to see if I met the qualifications for a diversion slot. After the meeting they were pretty sure that I would qualify. However, I had no doubt that I wouldn’t because I had three qualifying medical necessities.
Over the next few days, I sent the guy who evaluated me for HCS a couple of follow up emails to provide additional information and check on the progress. Strangely, I didn’t hear back from him which was concerning to me because he had always been responsive to my emails.. Sometime within those days, Sherry from Disability Rights informed me that he had bronchitis. Luckily, he had tested negative for the Coronavirus. I was glad to hear that but it was shocking to hear how fast he got the results back. On the news, they always said it took two or three weeks to get test results back. This makes me curious about the media. Are they really telling us the truth?
After that in-home visit, HCS/Integral Care’s employees were no longer able to do home visits and this was pretty much the start of my quanitine. They said I could come to their office for my meetings but I had a lot of concerns about going out in public since I have asthma. This worried me because I wondered if this would put a hold on me getting on HCS. I believed I suggested Integral Care come up with a way to do video meetings and they did via Microsoft TEAMS. However, I had to go to the Integral Care office for my psychological testing. This testing is a requirement to qualify for HCS. When I arrived at the office the receptionist took my attendant’s and I’s temperature and asked us a series of questions screening for Covid-19.
Little did I know this would become the “new normal”. Now I have had multiple video conference calls from doctor’s appointments to groups of 25 people. The group’s videos are kind of difficult when using Zoom (another video conference call format) because you can’t see everyone who is on the call.
I have been trying to keep a daily schedule: wake up at 9, take a shower, get dressed, take my medicine, do my exercises and start working. It isn’t really much different than before. However. sadly, I can’t go swimming at the YMCA which I really miss. Plus, the place where I go to get my allergy shots has decided patients can only get shots every two weeks instead of every week. I think they are trying to control the number of people in the office at once. When I went, there were only two patients and myself in the office. Usually, there are of 10 to 15 patients in the office at once.
I know it is hard not to go crazy these days because of the stay at home orders but I feel it is the right thing to do. The government is trying to contain the spread of the virus which will save lives down the road. Things will go to normal as we once knew it to an extent but there are some things which have changed for the better. Before the stay at home order most families have become so busy in their own lives that they don’t know each other. I think of these times as a time to reconnect and establish the meaning of family.
Voting Primaries 2020
April 8, 2020
Like most people, I voted in the Texas primary election. Of course I waited until the last day of early voting. I was treated like everyone and “sat” in line to vote. Not too long after I got in line, I noticed a van from an assisted living center pulled up and unloaded a group of seniors. As I came closer to the front of the line to sign up to vote, I noticed that most of the seniors were using the lower voter machines for people with disabilities. I saw one of the seniors sitting at one of the voting machines wearing headphones. I was quickly reminded of the accessible features required on voting machines.
When it became my turn to vote, I asked the voting staff who was helping me if she knew of any accessibility devices that I could use to independently vote. One staff member suggested I could
use the earphones and I said I could read just fine but I wasn’t able to touch the screen. One staff member took the voting machine out of its docking station to get it closer to me. I mentioned that there should be some switches to help me control the machine. Then I guess a light bulb went on in another voter staff brain. She reached around the vote machine dock and pulled out a small box with arrows, select button, etc.It was similar to the one below:
I was able to hold the controller in my lap and figure out how to use it. it was obvious that none of the voting staff knew how it worked. I found the buttons were difficult to press down which made it pretty hard to select the buttons. I was curious about how someone like Dave, my husband, could select the buttons by himself. The controller didn’t appear to have any ports to connect switches nor did it seem like the controller had the capability to scan. However, the buttons had braille on them.
Awesome Attendant News!
January 26, 2020
Dave and I believe we are getting off to a great start in the new decade. Dave started a new job with the University of Texas’s Center for Disability Studies as a job coach through the E4Texas program (https://disabilitystudies.utexas.edu/e4texas). As a job coach, he teaching students to become personal care attendants. The majority of the training is taking place in our home, I am every excited for him and look forward to having access to the pick of the litter!
In addition Dave is getting on a different attendant care program which will increase the number of hours he receives and raises his hourly rate significantly. This all came about due to our continuous problem with the high turnover of attendants. We are always in competition with McDonald’s hourly rate of flipping burgers for $13. I think everybody Is aware of this ongoing issue. So back in July (2019) one of my favorite friends, Julie Miller, put me in touch with one of her other favorite friends JulieAnne. JulieAnna had just been hired by Disability Rights of Texas (DRTX) as an Education Advocate and Julie thought she could be a good resource for us.
In a nutshell, Dave, JulieAnne, and I met at DRTX which led to re-connecting with a lady, Susan, who had given us advice on how Dave could get on a personal care attendant medicaid waiver program when he moved to Texas. Once Dave moved to Austin, Dave never had the opportunity to meet her in person until our re-connection. Moreover, after speaking with Susan guided Dave in getting a diversion slot to get on the Home and Community Service (HCS) medicaid waiver program. We are so excited Dave will be on HCS February 1st! This month, I am starting the 5 month process of getting on HCS!!!
On another awesome attendant note in my opinion people with years of experience as caregivers think they know it all. They want to do everything their way. Much to my surprise, about four months ago, we hired the two caregivers with years of experience. However, these two ladies are 1000% awesome and they have the attitude, “people are different and need to be respectful of their clients’ ways of their ways of doing things.” I must say, it is nice that they had basic knowledge of being caregivers. Ever since they started I have been pinching myself to make sure I am not dreaming.
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