Hello. I’m Mary. Please join me each week as we explore a variety of topics related to the needs of people with disabilities. We will touch on topics ranging from personal care attendants to durable medical equipment. Each week, I will share real stories of how these topics impact our lives. As a person living with a disability myself, I will share some of the many tips and tricks it takes to navigate this experience. Over 30 years ago, I started my journey toward independence when I was approved for Consumer Directed Services (CDS), and began living independently in my community. Despite the many ups and downs over the years, I have enjoyed every moment of the journey.
Most mornings I’m up very early. I usually set my alarm about 30 minutes before my Personal Care Attendant (PCA) is supposed to arrive to allow time for preparation of whatever the day is about to bring. My disability is just severe enough that I am completely reliant on my PCA to assist me in getting up and going to bed each day. This includes everything from transfers and dressing to meals. I am unable to do any of these things without them so I made a rule that all of my PCAs must call/text to let me know when they are on their way. There’s a lot of anxiety that happens when a person is constantly waiting on someone to arrive, so that phone call is crucial in the process. For newer PCAs, that phone call (or lack thereof) can be a good indication of whether or not they are actually going to show up. When everyone shows up as scheduled, I can then focus my attention on other goals I have for the day.
One of the biggest lessons that I have learned at the beginning of this journey is to always have a backup plan. This comes highly recommended in case a PCA is not able to come. The best option is to choose a friend or family member you trust to act in a backup capacity. If not possible, then choose a PCA that has been with you for a while. Also, when you hire PCA’s, let them know upfront that filling in for other shifts is a requirement for the job.
I have always wanted, and continue to fight for my independence. I’m constantly fighting for my right to have the same opportunities available to me as any other typical person. I believe anyone can achieve any goal as long as they’re willing to fight for it. I want to live my best life possible, as we all do. It takes a lot of courage to realize that the journey toward independence is worth everything. I’m always striving for living a Princess life!
If you’re interested in learning more about consumer-directed services, as part of your journey toward independence, please contact Access Personal Care at 816-822-7432.
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