I’ve come to realize that disabled people don't talk much about the fear we have in our lives every day. It’s difficult enough juggling government programs to cobble together a support system to live independently in the community but imagine adding the constant fear of losing one or two of them. I’m not going to hide it, I’m always afraid!
This fear motivates me to fight to hold on to what we've got and push hard for expansion and more security. I have no use for politicians that are constantly whining about the growing expense of the Medicaid program or the relentless allegations of fraud, waste, and abuse. If you want to go down that road let's talk about the defense budget. You know that bloated pork-barrel political morass that barely gets questioned and is full of fraud waste and abuse.
We’re constantly being scrutinized and often seen as needing expensive long term services and supports/healthcare that need to be ”managed.” Thus, managed care. If not done correctly, which is most of the time, managed care results in cutting back on healthcare, long term services and supports and not being remotely responsive to our needs. It seems like they've never met an algorithm they didn't like that consistently finds ”savings” and squeezes every last penny out of our hides in the name of cost-efficiency. And to make it more interesting, they claim that managed care produces better healthcare outcomes.
Trust me, it's generally a false narrative. If my health plan is pulling away access to important healthcare and whittling down my long term services and supports, at some point my health suffers; quality of life is another story altogether. Again, we’re fearful that in the name of saving money to enrich the bottom line of healthcare corporations there comes a moment in our lives when the dominoes start to fall. Our support systems fail and the people we need to assist us in living independently are either no longer covered or presented with systemic barriers including salaries that are definitely not a living wage or privacy rights violations vis-à-vis electronic visit verification and they‘re forced to make the very difficult decision of getting out of the field.
I see it happening frequently in my life. At least twice a week I lie in bed and hope that my PCA will come to work and get me up. It’s not unusual for me to lose a good PCA because they can't pay their bills with the current rate of reimbursement. My PCAs are typically Latinas with children and are the single head of household. I don't have enough need to offer them a full-time position so after a while, through sheer desperation, they get another job. Good for them and bad for me. When you don’t know how you're going to get out of bed in the morning you can't help but worry all the time. This is a life-altering situation and just isn’t important enough to the politicians and bureaucrats who have the power to provide better wages and build flexibility into systems that support our independence as well as quality of life.
My biggest fear is going back into an institution where I have absolutely zero control of my life. Please join me in being insightful and honest enough to say that you’re fearful and join in the fight to stop the incremental destabilization of our Independence and the systems and people that keep us out of institutions.