Imagine for a moment, your alarm goes off at 6 a.m. and it's time to go to work.
But somehow you can't get out of bed. You wait. You pick up your phone and see that the person that was supposed to be your arms and your legs to get you out of bed, cleaned up and dressed and ready to make a living is unable to come because she has a sick child.
Or perhaps someone in her house was exposed to someone who has COVID. Your one connection between dependence and independence is gone. Not her fault.
The home health care agency doesn't have enough on-call people to send you someone else. This is what disabled people who depend on direct care workers are faced with every day.
And this is only one barrier to our independence.
As a philanthropist with a disability I figured that I was in a unique position to try and address this issue. To try and "fix" it. And after all, I had a vested interest.
I looked everywhere for a model — for-profit or not-for-profit — that had figured this out. One that was profitable enough to sustain itself yet not so profitable that the people it served were unable to afford it.
One that understood the need for the client/consumer to have control over who cared for them — the ability to hire and fire and train. One that clearly had the client/consumer at the center.
One that actually paid the worker a living wage and saw this as a viable career choice.
I'll tell you that they are few and far between.
The goal for many disabled people to live an independent life with the assistance of a personal care attendant is great if you can find a qualified person to work for you, stay with you and be willing to be paid the rate that Medicaid will cover.
In Kent County where I live, the average hourly salary for a direct care worker is $12.29 an hour — a scant $0.23 over what they could make at the local fast food restaurant.
When we find a great worker, keeping them when they feel the pull to a higher paying, consistent position with the possibility of benefits has become increasingly difficult.
The issue of direct care workers and their availability, and especially their compensation has been elevated as our country continues to age.
The direct care crisis that disabled people experience has begun to be included in much of that discussion now, as advocates have pushed.
More recently with the candidates in the presidential race, personal care attendant issues have been included in disability related platforms.
Policy issues revolve around need and money. We've got the first and, of course, need the second.
Michigan was one of 24 states to sign onto the Medicaid waiver program in 2013 under Gov. Rick Snyder. This put additional money into the hands of disabled people already covered by Medicaid, and helped both keep disabled people in their homes, or help them get out of inappropriate placement in nursing homes.
With the dissolution of the auto no-fault law, the people who are permanently disabled from auto accidents and needing home care are often left without the ability to hire and pay for quality workers to say nothing of the basic costs of disability — and are now left with the limits that Medicaid imposes.
The costs to the system in health care and institutionalization are likely to surpass the potential costs of quality direct care workers to keep people in their homes, to say nothing of the potential for disabled people to become a taxpaying part of the workforce.
Issues of dignity, living wage and independence have to be a part of the conversation.
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December 13, 2020 at 12:09PM
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Kate Pew Wolters: As the country ages, the market demand for direct care workers will only intensify - Crain's Detroit Business
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