Saturday, August 04, 2007

The Personal Care Attendant: things I wish I'd known

The state of Minnesota has paid for a personal care attendant for our son for the past 2-3 years. In our case the service has been managed by an agency I'll call "The Agency". We've had a couple of young men, one of whom lasted a few months. We've gone through 3-4 young women, all students, with a bit more success. Along the way we've learned a few lessons worth passing. I'll try to summarize them here:
  1. There are books written about how to acquire and maintain a PCA, such as The Personal Care Attendant Guide: The Art of Finding, Keeping, or Being One. Katie Rodriguez Banister. Who knew? The Amazon page for this book links to others. We're going to order a couple.
  2. The PCA system was designed for the care of persons with severe cognitive and/or physical disabilities. The system is a poor match for our needs -- a physical very active child with complex behavioral and cognitive disabilities.
  3. A PCA has to work with the funded child. This is a poor fit for our needs. Often we are the only people who can handle our funded child, we'd like the aide to switch tasks and cover the other children. In practice they often fudge things and do this, but they're not supposed to.
  4. Any PCA who has the skills and physical abilities to work with our child isn't doing the work for the money. The stipend they receive is very marginal, especially after The Agency takes their cut. Our PCAs are mostly working for experience consistent with their studies and career track. This means any aide will last at most 1-2 years before their career takes them in other directions.
  5. The PCAs we've worked with have received little or no relevant training from The Agency. I think, in retrospect, that we should have more directive about what training our PCAs needed prior to starting -- or set up our own training program.
  6. Reliability: Our PCAs are young, between the ages of 19 and 23 typically. Sometimes their parents don't seem to remember that their daughters are doing real work. Reliability and schedules can be challenging.
  7. We have had chronic problems with finding aides to fill our allotted hours. Our Agency is supposed to "bank" unused hours, since it seems they're paid for them. We're not confident that the hours have been truly "banked" or if we'll ever get credit for them. Certainly if we leave the agency I suspect we'll lose the ours.
  8. The PCA program has to be renewed annually. We weren't aware of that and it appears The Agency forgot some of their required tasks. We need to take on more of the tracking of those tasks ourselves.
  9. Nanny/funding: I think we'd be better off if we could get the state to simply send us cash for the hours we have PCAs assigned. We could then put the state money and our own money towards a high end Nanny who could work as much with our other children as with our funded child. Alas, I don't think the system works this way.
What we hope to do going forward:
  1. Prepare any aide for aggressive behavior. Have they ever been hit? Do they know how to respond?
  2. Require The Agency to provide training in self-defense and managing aggression issues.
  3. Develop a curriculum and reading program for the PCA. For their initial hours assign them readings and study materials before they start work.
  4. Expect aides to last 6-12 months and encourage them to keep an eye open for their replacements.
  5. Look at alternatives to using The Agency.
Update 10/16/07: The Agency's standing dropped into the sub-basement when we discovered they'd never initiated the required yearly reauthorization procedure - but they continued to provide services and hours while billing the state.


Assistive technology said...

Thank you for this article. You give some good advice. I doubt the state would send you money instead of the hours, but maybe you could make a valid case that they should be assigning you guys a nanny rather than a PCA.


Anonymous said...

There is a grant you can recieve through the state of Minnesota that would pay you the monies instead of the agency, And you can use the monies as you see fit. I am a PCA in Minnesota and have been working with the same family for the last five years,keep hope alive you just might find your perfect fit. You are right about training though I've had little to no "formal" training.

John Gordon said...

We are working on a waiver application, which is what I think the state program is called. In theory the agencies provide valuable services (screening, training) in practice I think both are pretty worthless. Most aides are too young to have much of a record to screen against, and the quality of the training is marginal.

I'd like to see a program that allowed one to outsource the screening and training and otherwise manage the PCA funds directly.

Anonymous said...

For the care you are looking for your child belongs in the Waiver Program. The PCA program is a program that is supposed to be for medical needs, however; ends up as DHS's default program for funding.
I work for Waiver/PCA provider and supervise their PCA program. To make a long story short, from a provider point of view, DHS makes the PCA program impossible to do what you need to for your employees training and trying to keep up with their changes in regulations. In the case of your child, a PCA is not allowed by DHS to deal with the behavioral issues your son needs. The waiver program is. At that point DHS actually pays to train your staff and deal with at behavioral issues. The program is meant to help develop living skills. Just trust me on this, the problems you are experiencing sound like problems that have been occurring because of the DHS system. If you really aren't happy with your provider, the hours you have banked probably aren't their because DHS sent out all new contracts in October that adjust to only what you need to the service aggrement. If you don't have a waiver slot by now, talk to your case worker and really push the behavioral issues. Slots are frozen, but it should help you keep higher on the list.

-MN Provider