Advocacy, Political

Really?!?

Remember how I’ve been writing about the direct support staffing crisis? That we’re not paying caregivers enough so are having a really hard time trying to find or hire anyone? This story by Kirsten Swanson of KSTP, is more about the direct support crisis impact on group homes: From Group Home to Senior Living Staffing Crisis in Minnesota’s Disability Services Forces Aging Parents into Desperate Situations (KSTP news)

The staffing crisis is also impacting those of us living or trying to live independently. Apparently, the MN Department of Human Services Commissioner thinks everything is “fairly stable.” Really?!?

  • My parents have been helping out a friend of ours who has lived independently for around 35 years. He has NOT had consistent, dependable personal care attendant help in 2 months. Traditional PCA agencies aren’t finding staff and PCA Choice relies on clients finding their own staff. Either way, there are very few people who are willing or able to work for $15.25/hour with no benefits. He does NOT want to lose his independence.
  • I use self-directed Consumer Directed Community Supports (CDCS), so can pay staff a little more than PCA provider agencies. My CDCS budget covers less than 2/3 of the staffing hours I need to live independently. I could switch to provider services, but then I’d be in a similar situation to my friend in the first bullet above where providers are unable to find staff. Or I’d still have to find my own staff but for less than what I pay them now.
  • Oh, and, by the way, for those who think living in a group home or more segregated setting should be my only choice, these options cost more than providing adequate support in our own homes. It’s important to have a variety of options available to meet people’s needs, but please make sure that self-directed options like CDCS are on a level-playing field with other provider services. Right now, they simply are not.
  • Because I don’t have enough caregivers, I’m usually going home on weekends. This weekend, my mom stayed here with me at my apartment. My dad usually spends 2-4 nights a week with me at my apartment. This is do-able for now but not a great long-term independence success story. Without a budget that will cover the staff I need, I may have to switch to more costly provider services or move back home.

Here are my questions:

  • What do I do when my parents are in their upper-80s, like the couple featured in this KSTP story? Or scarier, what do I do when they’re not around?
  • What happens to my friend or the others who have had to move from their homes to more restrictive settings because they can’t find staff? Paying staff competitive salaries and remaining in our homes is less costly than more restrictive settings.
  • How do we make people understand that there is a caregiver crisis? It’s me, my friends, and others with disabilities. It’s also impacting seniors, nursing homes, and others needing caregivers. We’re all competing for a limited number of employees who are willing to work for very low wages.
  • What do we do, when the commissioner of the agency, who is supposed to be helping figure this out, doesn’t realize there’s a problem?

We can and must do better. Please do NOT leave us behind! Elected officials, please approve budgets and funding to pay direct support staff living wages. DHS, make CDCS budgets comparable to provider services so we can direct our own services. I am angry. I am disappointed. We all should be.

If you’re reading this and you are angry about the crisis, let your elected officials know that this is not okay.

Thanks Kirsten Swanson for raising awareness of what’s happening and how many of us are struggling and not feeling “fairly stable!”

3 thoughts on “Really?!?”

  1. Justin, you’re describing a lot of what I’m hearing from others. I’ve left you my direct work email as I am looking to organize around exactly what you’re bringing forward with group homes, self-directed options and the staffing shortage.

    Liked by 1 person

  2. 💯 This is spot on, and it absolutely cannot be left to figure itself out. I don’t think we can wait for lawmakers and bureaucrats to understand the issue enough to find a solution that works for them, we have to make them feel political pressure to meet THE COMMUNITY’s demands to fix this.

    What are you demanding? What wages/benefits do you think it will take to fix this?

    Liked by 1 person

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