A common requirement among a lot of people with physically disabilities is attendant care. Attendant care is almost as important as eating, though you can’t eat without attendant care. My husband, Dave, and I are on the Consumer Direct Services (CDS), which means we do all the hiring and firing of our attendants. We chose this over going with an agency because attendants from an agency would not be able to drive our vans which we need. Although, sometimes it is really hard to find people to work as an attendant when you have to do the recruiting yourself.
Another problem with finding attendants is the pay is ridiculously low due to the rate set by the government which isn’t competitive to the average rate for the economy. My experience with agency option is they also have difficulties hiring applicants due to the low pay. Plus, they are supposed to provide a backup attendant when a client’s regular scheduled attendant can’t make it. This is not always reliable because most they only have one backup for ten people. They are also shorthanded!
Dave and I also are face with problem of applicants not showing up for an interview. We don’t understand why people schedule an interview and then not show. It is very disrespectful and is a waste of time. I wonder if people not showing up for an interview is common for other companies like Dell Computers, Apple, Health Care Agencies, etc. Even if they received a better offer, they should e-mail or call us to say so! We don’t like getting dressed on a Saturday just to wait for a no show.
One of my blog followers’ son just started college and he is living on campus. He has a physical disability and relies on attendant care. Even though he uses the agency option, they can’t find any attendants. One suggestion I have is to advertising on campus. This is something I did when I was in college. I would think the college has its own Facebook page or students that students\groups who created Facebook page for different purposes such as job postings. This is a new way Dave and I are finding attendants, we post our attendant ad on different Facebook pages around Austin. We still get some no shows (not plas many as we did before). I hope this helps!
Sometimes I often assume that people who work people who have disabilities automatically will understand me. My assumption is farther than the truth and I am ashamed that I assumed this. I quickly realize they don’t understand me from their factual expressions, their blank stares. I feel like an idiot so I immediately start using my communication device. Although with my caregivers, I will use my communication device when they first start, but after a week or two them to begin understanding my speech. So, I will start spelling words so they began understanding my speech patterns. Slowly but surely they pick up my speech and they can understand everything I am saying. They can serve as my interpreter when people can’t understand me. This doesn’t mean I don’t need to use my communication device, but when I am trying to communicate quickly my attendant serve as a great interpreter.
I mainly use my communication device when I speak to a large audience. I am not speaking face to face to them so I can’t tell if they are understanding me or not. I wonder what it would be like if I gave a fifteen minutes speech using my own voice. I think it would be a total disaster. People would be whispering, “What did she say?” Laughing at odd moments, totally awful.
I had a similar experience happened to me when I was giving a speech to large audience (about 500 people) to receive an award for my achievement using assistive technologies. I had prepared a speech in my communication device so I thought. I actually had almost a whole week to work on it because I was off of work due to ice storm. I worked for a school district and they called off school for four days. I thought to myself, “I needed this otherwise I didn’t know when I would get my speech written.” I remember having difficulties writing my speech because I wanted it to be prefect. So, I guess I had three different copies but I was sure I had the right copy in my communication device. I rechecked it like four times.
The day of presentation I barely got there in enough time to take my spot in the panel. There were multiple people who were being recognized for excellence of overcoming their disabilities with the use of assistive technology. When it was my turn to speak I pressed the button on my communication device to make it talk. It went smooth until it got to the end of the fourth sentences and it quit speaking because nothing else was there. I panicked for a second and said “oops, I the rest of speech must be on another flash drive, one second please” motioning to my friend who was audience to come up and bring my flash drive bag. Oh, which one was it? I tried another flash drive but it was not on right one either! Took a deep breath and I spontaneously started talking to with my communication device. Afterwards I just wanted to go to my room, I was so embarrassed. My friends said I did a great job at recovering myself. To my surprise, I was the talk of the conference in a good way. People were astonished how well I could spontaneously communicate with my device.
Throughout my life I had physical therapy which has made a huge difference in my abilities. When I’m not doing therapy my balance, posture, and overall control goes downhill. It effects how much assistance I need with my transfers. I love when my attendants say, “Wow, I hardly had to do anything to transfer you.” For the past two years, I haven’t any therapy and I could tell my coordination and balance wasn’t what it should be.
Through my Medicaid waiver program, I can receive physical therapy, occupational therapy, aqua therapy, etc. I have had physical therapist but unfortunately my physical therapist had to retired. I couldn’t find another physical therapist so I decided to try aqua therapy. I didn’t really know what to expect but it was in the pool and I loved the water. It took a while to get It going due to locating a facility with a pool that would allow an aqua therapist to work in. it was crazy because I was a member to the YMCA, but the one closest to our house wouldn’t let an aqua therapist their facility. We finally discovered another YMCA that would let aqua therapist practice there. Thank god!
Aqua therapy is amazing. I can do “normal” exercises that people do outside of the water. I jump, do all kinds of leg stretches and arm movements. It is incredible to feel my body do things I didn’t think it could do. The buoyancy of the water takes off the weight of your body which me as light as feather. Now I am not saying it is work, it takes a lot of coordination for my brain to tell my legs and arms to move at the same time, it is an intense work out. I can feel the burn for days after. I only have aqua therapy once a week, I wish it was twice!
Things are finally getting back to normal as far attendant go but I wouldn’t hold my breath! Dave went the art studio today and I am writing my blog. We hired three new attendants who can work for us both which is awesome in case someone calls in so now we have back ups. It was difficult when we weren’t together as a married couple to find attendants, but now it was extremely difficult to find double the attendants. Dave and I like to have two attendants at a time because we each have our separate things to do. Although some nights, we will have one attendant because we are usually together in the evenings.
The last couple of month, Dave and I had the worse luck with attendants. The attendant story that puts the cherry on top is the woman who we found passed out in her car in front of our house. She was supposed to come at 8:00 in the morning but she called me at about 8:15 saying she was running late and she would be there in ten minutes. Well, ten minutes came and went and Dave’s attendant who was scheduled to come at 10:00 come in with a confused look because he was expecting to see my attendant because her car was in front of our house. I called my back up attendant and she came over while Dave got ready for the day.
By the time my backup arrived Dave was in his wheelchair and he, my attendant and his went out to the car. They saw her inside the car unconscious and they knocked on her widow to try to wake her up but she wouldn’t. So, they called 911 and requested EMS and the police. Long story short, she was passed out on crack and the police found a pipe and some pills. I think EMS checked her over but she was okay and quickly arrested.
A few days and she tried to get her job back. She told us that she had a seizure that was why she passed out. The interesting part about it was she couldn’t provide a letter from her seizures because the emergency room diagnosed her. At this point, we knew she was lying!
Usually my blog is about AAC but I would like to discuss the phrase “Living a Normal Life”. Living a normal life can be subjective in that people define normal differently. My normal has always been what the average person accomplishes in their life. For instance, I was with an abled-bodied man for fifteen years. Did that make me more normal than marrying a man with a disability? I guess some people think that being with an able-bodied person makes them look more normal.
Now I have been married to a man with a disability and I truly don’t see the difference. However, personality wise I prefer my current husband because we like to do the same things and we share a wicked sense of humor. We like to go to concerts and we really enjoy taking trips together just like a “normal” couple. Some may say my life has been more than average since I went through a separation.
For all of the people who think being with somebody who is able-bodied I want to tell them it doesn’t make you more normal. You still have a disability either way.
The first Pittsburgh Employment Conference (PEC) was in 1992 and was organized by Support Helps Others Use Technology (SHOUT). The purpose of the conference was to raise awareness of the extremely high unemployment rate of people who rely on AAC. Although the initial focus of the annual conference was employment other topics such as sexuality, depression, and growing older were also addressed. The conference also gave people who rely on AAC the opportunity to socialize with each other and form lasting friendships. Unfortunately, due to funding issues there hasn’t been a PEC since 2011.
Most people use software such as Go-To-Meeting or Skype as a way of collaborating and sharing ideas with one another across the country. This concept has been applied to conferences where the presenter has videos of their speeches and the conference participants can tune in and watch. Then the conference organizers setup scheduled live chats with the presenters to answer questions and interact with participants. I think this idea can be applied to revive PEC because it is cost efficient but it still enables interaction.
I would like to start discussion about having a similar conference via the internet. Please share your suggestions and comments following this blog or on Facebook. I would love to hear from users, family members, and professionals on this important subject.
Over the last few months I have been having difficulties accessing my SGD. Normally I access my device with my left hand, but I have lost control over it. This makes me feel very frustrated and angry that I cant do what I used to. It is kind of like breaking your arm and it never heals. I always hope one day I will wake up and it would miraculously work again. I find myself getting depressed because I have lost another ability.
About a year ago I started to get Botox in my right arm and hand to help stop the involuntary movements. It did help a great deal so I thought I could get the shots in my left arm and hand to help me to have better control. However, my doctor told me I have a lot of dystonia (Involuntary muscle contractions that cause repetitive or twisting movements) in my left arm and Botox wouldnt help. So he has referred me to a brain and spine neurologist to have further tests.
In the meantime, I am trying different access Methods to see if I can access my SGD more efficiently. People always think eye gaze is the answer but it doesnt always work especially if you cant hold your head completely still. I do have personal experience with an eye gaze system and it was frustrating at best because I continuously moved out of the cameras line of sight. The camera kept needing to be recalibrated which wasted a lot of time. I have also tried scanning with a single switch but I found it very time consuming and slow.
The best option I have found so far was the Tracker. With a Tracker a special camera is attached to top of my SGD which tracks light from a reflective dot that is on my glasses. The reflection moves a cursor on my screen and I can select the buttons I need. I like how I can adjust the sensitivity of the cursor movement to compensate for my involuntary spastic movements. I will be posting an article in SGD Tips section soon about setting up a Tracker.