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In my last blog, The Permanent, Occasional, Part-Time, Sometimes Aide, I talked about how the absences of my son’s Habilitation Aide have affected us.

Today, his aide posted on Facebook, “Some people like to tell me how much of an inconvenience MY cancer was to them.” I don’t know that that statement had anything to do with us, but I began to wonder if people reading my blog might interpret it that way.

All of us, to some degree or another, wear multiple hats, some of us are better at managing them than others.

When it comes to my son’s program and his aides, I wear three hats directly related to his services.

  • I’m the managing employer of his program/services. I’m responsible for hiring, firing staff; for scheduling staff; for approving and monitoring hours submitted on time sheets; for monthly reporting forms that verify we’re working toward approved goals in an appropriate manner. I’m responsible for enforcing the policies of the agency that’s facilitating our program. I’m responsible for scheduling monitoring appointments and establishing an Individualized Service Plan (ISP) with the agency and local county office. I answer to the agency facilitating our program.
  • I’m a parent. My son is my only child, an adult with special needs that will need support and assistance the rest of his life. His physical, mental and emotional health are my responsibility. He is my priority. I am his advocate. I am his voice.
  • I’m a friend. Our Habilitation aide was our friend, before she was our son’s aide. We laughed, we shared some painful experiences. I care deeply about her, as a friend. I’d like to take her pain and struggling from her, though I know the most I can do is listen. We’ve been mutually supportive of one another at difficult times.

Balancing all these hats, wearing them all at one time, is nearly impossible, as they are often in conflict with one another.

The friend understands the effects of cancer, of cancer treatment, how difficult it is to go through life altering treatment, how medications can change who we are, how we think, what we feel. I know the effects of medications, as I experience them myself. I know what it’s like to live with chronic pain, physical changes, etc. I am not the same person I was prior to my diagnoses. I fully understand. This is why we’ve been trying to be understanding, why I’ve been trying to explain to my son that we can’t expect his aide to be the same person she was before, that it might take a while for her to be more like the person he knew, get “on track,” as he says. I’m asking him weekly to be patient.

The parent is trying to understand both the aide’s and my son’s positions, trying to use this experience as a learning opportunity, praising him for his effort to adjust to changes to his routine, to his schedule, accepting that there are things, due to these changes that he can’t do, as much as he’d like to. It’s a lot to ask him to comprehend and adjust to. He’s always had trouble adjusting to change, but he’s doing better. He does a lot of perseverating, he talks incessantly about things that he stresses and worries about. Since June, he hasn’t stopped talking about whether or not his aide is going to come. We get up in the morning and as soon as we have an opportunity to talk to one another, whether his aide is coming on the next scheduled day is the topic of conversation. It’s the first and the last thing he talks about every day. His aide doesn’t realize this, because he’s afraid of being honest about how he feels because he had an aide previously who told him to be honest, tell her how he felt, but the first time he did, she blew up at him. At home, he feels comfortable, he knows I listen, I know how much we sometimes need to vent. (That’s the whole reason I have a blog!)

The Managing Employer has to be constantly thinking about the responsibilities that come with the role. I try to keep my son’s staff happy, address their concerns, make sure they know what’s expected of them and I also have a responsibility to the agency that our aide is working for/representing. The funding that pays for an aide, that pays for our program has strict guidelines. If we don’t use the funding and hours in our budget, we could have our budget reduced in the next fiscal year. If we violate policies, aren’t following guidelines set forth by the funding source, we could lose the funding completely. If we aren’t doing things that are relevant to our stated outcomes, they consider us to be misusing the funding then both myself and our aide could be forced to pay back money paid for services. If we lose the waiver that funds his program, he will not have support available to him later in life when my husband and I are no longer here, he would also lose his Medicaid, as he currently qualifies because of the waiver.

I have been counseled in the past, by representatives of the agency, the county office, that I can’t accommodate everyone, have to enforce agency policies, should not ever be sacrificing my son’s needs, his services, for our staff. I feel pulled in a multitude of directions, trying to meet the expectations of, feeling responsible to everyone involved.

When I write about how these absences affect my son, how it complicates things, those are concerns I have to have, things I have to consider, as the managing employer of his services, as his parent. It’s not about how his aide’s health problems “inconvenience” us, it’s about how her inability to work scheduled hours impacts his services.

I don’t know if this clarifies my last blog or not, but it certainly helped me to organize my thoughts.

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