Justin in MN Senate Hearing Room
Advocacy, Political

Bureaucracy + budget + staffing = nightmare

Enough with the waiting around for the “all about staffing” blog. I did have some health stuff I was dealing with and ended up in the emergency room a week ago. I’m doing fine now, but it seems like a good excuse for not getting this post done last week.

Justin in wheelchair with communication device computer table looking at monitor that shows Mn House legislative hearing with 7 webcams displayed

Recap #1: The first hurdle in my living independently was finding an accessible apartment that would meet my needs – large enough to move around in a power wheelchair, store all my durable medical equipment (e.g. shower chair, toilet chair, gait trainer, lift, etc.), and have a roll-in shower. I finally found an apartment that is workable and moved in mid-February. The image above is of me getting ready to speak about my experiences and need for more accessible housing that actually works at a Mn House Hearing on accessible housing. Here’s more about advocating for accessible housing and here’s the link to my MN House testimony recording on YouTube.

Recap #2: The 2nd hurdle is how to afford an income-restricted apartment of $1,332/month when your sole income is SSI of $840/month. The math still isn’t adding up on this one. There is a possibility that I’ll be getting a housing voucher, but that’s still not in place. Check out A Math Problem.

Next Hurdle: Staffing

Okay, hang on, this part gets complicated fast. I am writing about my situation and not about all of the various waivered services or staffing options that go along with them. I’m thinking people need many advanced degrees to actually understand these services or figure out how to make them work best for people needing these services.


I have been using Consumer Directed Community Supports (CDCS) with a Developmental Disability (DD) Waiver since I was about 3 years old. I love CDCS because it’s the most self-directed service where I can hire, train, and manage my own staff. I can also pay people a bit more which helps in finding and being able to keep staff. A fiscal management service (FMS) handles all of the payroll and human resources details and I pay a fee for them to do that. So, I get an annual budget and with the help of my parents we come up with a plan for how to best allocate the funds for that budget to best meet my needs. Most of the budget goes to staffing with a little bit to cover things like adaptive equipment not covered by Medical Assistance or the health insurance that my mom has through her work.

I qualify for twenty-four hour awake care which obviously means that I need to have direct support professionals (DSPs) with me twenty-four hours a day/365 days a year. Right now, with my current budget that my county and Mn Department of Human Services (DHS) allocate for me, I would have to pay people under $10/hour to pay staff because my budget isn’t large enough to cover 24-hour care. I am going to run out of budget with about third left of my budget year. The reason I’ll be running out is because I have more staff now caring for me at my apartment.  

What are my options?

The County and DHS will tell me to use provider services such as PCA Choice which means I’ll still be hiring, training, and managing my staff – but they’ll just get paid less and more money will go to overhead and profits for the PCA provider company. I have one friend who was forced to make this decision and has been struggling with finding enough staff and has discovered that providers are being paid $100,000 more than what my budget currently is for CDCS.

Or, they’ll say my parents can provide unpaid care, which they already do to the tune of 60 hrs a week, but that wasn’t really one of my goals for becoming more independent. I’m not more independent when I have to move back home so my parents can care for me. Or if they have to spend their time here at my apartment caring for me with no pay.

Switching to PCA Choice or more traditional staffing services isn’t a great option right now, either. I know other people with disabilities whose PCA provider companies are not able to find staff right now for the $14.40/hour negotiated rate. They’re at risk of having to go live in nursing homes or more institutionalized setttings. One of my friends who has been living independently for over 30 years has been told by his case manager that he will most likely have to go into a nursing home at the end of this month since he can’t find direct support staff. This is SCARY and HEARTBREAKING and WRONG. I have heard of others facing these realities.

By the way, nursing home and insitutionalized settings like group homes are way more expensive than my having a CDCS budget that actually would cover my 24-hour care at the rate I pay of $17 an hour. They’re also more expensive than paying direct support professionals a decent wage for those that choose provider services like PCA Choice or traditional PCA services.

How am I feeling?

I am disappointed and frustrated in how complex these systems are. I’m also disappointed and frustrated with Minnesota DHS and the county for not doing more to make CDCS equitable and a viable option for those of us who require 24-hour care without providing a reasonable budget for covering that care. Forcing those of us to use provider services for staffing when we want to choose more self-directed CDCS seems to go against the intent of Olmstead and Waiver Reimagine. The Olmstead decision says that I’m supposed to live in the least-restricted environments in my community and be in control of my life. Forcing me to use provider PCA services when it is more costly to the state and doesn’t meet my needs seems as if DHS and the counties are great at saying words like person-centered and self-directed but don’t really mean it.

What am I going to do?

It’ll involve an appeal of my CDCS budget, which will be new for me. It’ll involve advocating for equitable budgets for CDCS or for whatever replaces it for those of us living indpendently and wanting self-direction with DHS’s Waiver Reimagine.

None of this is easy. Did I mention that I’m disappointed and frustrated? To quote Roy Kent from Ted Lasso “F**********************************************************CK!”

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4 thoughts on “Bureaucracy + budget + staffing = nightmare”

  1. It’s tough, Justin. I receive 70.5 PCA hours a week, but like you I need 24/7 support. My PCA lives with me, and I’m fortunate that he provides around-the-clock care for me, but I know many people aren’t as lucky as I am when it comes to PCAs.

    Liked by 1 person

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