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Advocacy, Inspiration, Personal Reflections, Uncategorized

Why Long-Term Care Programs Give Me My Arms, Legs, and So Much More.

It’s been a long night. I’ve been tossing and turning. My mouth is dry; I need more water. I haven’t gotten much sleep lately, so I know this morning is going to be rough.

The door unlocks, the light turns on.

I’m greeted by the start of a tea kettle for my French press coffee (which I basically need to live.) I’m definitely not a morning person. There’s some friendly banter, and then it’s time to get to work. We do my breathing treatments, I get in the shower (where I can sit and think about what kind of superpowers I’d find most useful.) We pick out my clothes, as I complain roughly 300 times how “dead” I am, threatening to fall asleep mid-task. They already know what I’m eating for breakfast, as I can’t be bothered to be too spontaneous so early. I eat my eggs, get ready for work, and we’re out the door.

As I sit in the passenger side of my minivan–radio blaring to wake me up–I become very aware of how grateful I am. As someone with a disability that impacts nearly every aspect of my life, my employees really are my arms and legs. They are my employees, but in this line of work, they are not just employees—they do so much more. These are the people that bring me coffee when I’m having a rough day. These are the people who help me pick out the perfect outfit when I have somewhere important to be, the people who wake me up in the morning, the people I choose to come home to. They’re the reason I get to work (mostly) on time, the reason I can always be the friend, daughter, or sister I want to be, and the reason I can spontaneously get tacos on a Monday night when I’m feeling it, just like anyone else. They help me be the independent woman I want to be, and the fact that I can choose who helps me makes my life efficient–in my professional life and my personal life. I don’t have to spend my days worrying about if I’ll have care, or if the person helping me is qualified for my personal needs and preferences. I know because I thoughtfully picked them and taught them.

Because of the flexibility that the current long-term care programs provide, I can choose people who not only are capable, but are actually compatible with my life. I don’t think anyone really understands how much my assistants are an extension of me, and who would want just anyone being such a close part of their life? I get to choose who sees me at my worst, at my best, and everywhere in-between. Not only do they help me get from point A to point B, they help me be who I want to be.

Right now, with the repeal and replacement of the Affordable Care Act (ACA), legislation is being proposed to introduce Medicaid block grants. These block grants could mean cuts to programs like the ones I use to live my day to day life, as well as many other programs that so many of us rely on. (To learn more about block grants and what it could mean for you, click here.) If you know me, you know I’m not one to get very loud about advocacy, but now is the time to act. Contact your representatives, share your voice, share your story. This isn’t just about budgets and taxes, this is about humanity and the right–my right–to live my life how I want and need to. This isn’t just a job, it’s my life.

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