How can families of someone with a spinal cord injury evaluate potential caregivers?

You can private-hire or there are a myriad of public programs in every state of different kinds in extent of how much they might provide in terms of the care. But I would say if you’re privately hiring, ask your social worker for a resource. “Personal Care Assistive Management” is one booklet that’s out there. It is very extensive on how to screen people, how to ask them certain questions, how to go over the tasks. I think the best thing is to have an attendant-care plan, which outlines when the person gets up, what they need when—at 10 o’clock, 11 o’clock—outline exactly what they need and how long it takes to do that so that when you’re hiring someone you say, “This is the attendant-care plan, and these are the duties that need to be done.” They can see the full scope of the job. When you’re hiring somebody to be an attendant or caregiver, you’re them hiring for a job. They’re not there to be your friend, and best buddy and all that jazz. But they also deserve a professional look at the job, not just say, “Could you come in and help my son or my husband?” So an attendant care plan where it’s written out and very clearly delineated is very helpful in hiring. But it’s also helpful if the family wants to do the support, and if you can’t be the person who does all the care, you see the scope of the job. And it will take actual time—eight-hours-a day—because “this takes this long and that takes that long”, and you know what the scope of the job is. So therefore, if you have a flexible family situation or other support, you can say “I’d like you to come here in the evening and help me out and this is what needs to be done. Boy, I could really use some help from you in the morning.” Because people, and family and friends always come up after a spinal cord injury and say “What can I do to help you?” And without having a clear plan when you get home to say, “I need your help in the morning from 8:00 to 10:30.” If it’s written out, you can hand that to them and say “This is how you can help me, I don’t need any more cookies or cakes.”

You want to spend as much time as you can with interviewing, doing a background check, remember they’re going to be in your home. They can steal from you, and I don’t mean to badmouth caregivers, but then again the personal nature of what they’re going to be doing—they’re going to be in their homes and if you have children in your home there are all kinds of things you need to remember that they can be vulnerable to. They’re going to be doing very intimate things to your loved one, so you have to be careful about that. Do they have the ability to learn?—even if they don’t have any experience with spinal cord injury, that’s okay. Do they seem like they could learn? If they are green and don’t know a darn thing about spinal cord injury, but you think, “Gosh, in my gut, I think they may be able to learn something,” then go with your gut, see if you could teach them that and give that a chance. Sometimes those turn out to be the best caregivers in the world.

That’s a tough question because if you don’t know the right questions to ask, then obviously you’re not going to be able to evaluate something. Having a case management program, our case managers try to assist the individual with a spinal cord injury and their family. We have a little booklet that says, “Here are the things you need to ask the caregiver, here are the things that you need to ask if you’re using an agency.” It is tough because obviously they’re not getting paid a whole lot of money—they might be making eight bucks or ten bucks an hour, and they can go to McDonald’s and make that. So you have to think about you’re not always going to get the person who is dedicated. I think that’s one thing that makes families a little standoffish because they’re worried—“I don’t know if my husband, or my daughter or my son’s going to be safe when I leave this person alone.” We suggest that they stay in contact with the supervisors and the agency itself, and as soon as they indicate that there’s a problem, call them immediately. Don’t wait weeks and months.