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.