Living independently Requires Support
As mentioned in my post on Living Independently Requires Financial Support, staff support is needed for maintaining independent living. That support came via a Person/Family Directed Support Waiver (P/FDS) from the County. As mentioned in my other post, we got this support almost by accident. But once we had it, we needed to determine how to use the limited funds.
Dave is very capable of doing almost anything. He often accomplishes things he really wants to do, even after I tell him he won’t be able to do it. One time, after a hospital visit, he wanted to take the ID bracelet off. I told him it would be too difficult to do on his own, and he should wait until we get home so I could cut it off. Just a few minutes later, it was off. I don’t even know how he did it! But, will he brush his teeth, sweep his floor, or do his laundry without some kind of motivation? Probably not, at least not when we started out. So, we needed staff (often called Habilitation Aides) to visit with him regularly to help him get the important tasks of independent living accomplished.
Habilitation Aides Support Independence
In the beginning, we had no idea how many hours would be needed to provide support to Dave. And, as mentioned, the P/FDS waiver funds are limited. We had 2 choices for how to spend these funds. We could hire an agency, such as the Arc, to provide aides. Or, we could hire them ourselves. We could get a lot more hours if we hired them ourselves because we could determine how much to pay them. So, that’s what we did. But, this meant we had to create and post advertisements for the position, interview prospective aides, go through the complex paperwork, and train and manage our “employees.” And it was a lot of work – a bit like managing a business! It felt like a part-time job on top of my full-time job to manage it all.
We live near a university, so we often hired students. We could pay them more than they would get at other kinds of jobs available to students, but less than the cost of hiring an agency to provide aides, and they could get some experience. Students are energetic and creative, but they don’t stay around long, so we were hiring very frequently. Students also have a lot of holiday breaks, so I found myself frequently serving as Dave’s aide.
But that wasn’t always a bad thing. It helped me to get a handle on how things were working and discover for myself just how much time it took to get Dave moving. For example, his aides often had difficulty motivating him to get started on his tasks. He preferred playing with his Yu-Gi-Oh cards that were often spread all over the table. The aides resorted to things like throwing a blanket over the table or turning off the lights to get him to work on his tasks. When I was there with him, I discovered this challenging situation first-hand.
Managing Habilitation Aides
We developed a checklist of tasks, along with descriptions, for Dave’s helpers, which has, by this point, gone through numerous iterations. We wanted Dave to do his own tasks, but he needed help accomplishing them thoroughly (and still does). Paradoxically, Dave’s high level of functioning sometimes creates conflict. It is easy to believe him when he makes a promise, but that can be a mistake. For example, he would often tell the staff that he would fold the clothes after they left. But he never did, though he probably sincerely meant to. The funny thing is, he folds clothes very meticulously when he wants to! But he can’t be bothered to fold his laundry. After all this time, he now hangs his clothes over the chairs in his dining area.
Another issue that has happened more times than I care to admit, is that, when I see that tasks aren’t getting done, or aren’t getting done correctly or completely, I have presumed the Habilitation Aides are not doing their job. When I ask Dave about it, he confirms my suspicion. Wrong again! After much cajoling, Dave usually admits that he has refused to do the task. Dave and I have had numerous “come to Jesus” discussions during which I tell him that he could not live on his own without their help, so he must do as they ask. This helps for a while, but we often cycle back to the same issue over time. Supporting successful independence gets easier over time, but never ends.