Update on Lily’s staffing, and the realities of our future

One of the points that is listed in the document that the Sibling Support Network put together to describe what sibs want service providers to know is that we are likely to outlive our parents but not necessarily our siblings with disabilities, and that we thus ought to be considered – if not included – in their lives and plans. Seeing the staff turn over for the first time since Lily joined her independent living program has been an interesting experience, in that I’m definitely able to see what’s going on and am acknowledged as being part of the family, but I’m still in a position of minimal power; it’s disconcerting to realize that if anything were to happen to my parents, my sister’s immediate care would be covered by people whose arrangements I don’t fully understand.

When I started writing this post, my family’s status was this: we were in a transition period during which at least two of the three “normal” shifts in Lily’s schedule were being restaffed, and we needed more substitutes and people to help cover weekends so the weekday staffers could have more time for their own lives. It was hugely stressful for a variety of reasons. I sensed that a lot of the people who were being interviewed were going to ultimately settle into other clients’ homes, but the candidates were and are – as we have consistently experienced – good people who are really devoted to helping other people live their lives independently and with dignity.

I absolutely support a matching system in a program like this; you’re creating a sort of extended family, and you want to include people who want to be there. As her older sister, I can tell you that Lily’s personality isn’t one that everyone would want to make part of their lives for 40 hours a week. Sure, she’s a charmer and a flirt who loves being social, but she’s also a dominant enough personality (and smart enough) that she can be difficult; if she doesn’t want to take a bath but needs one, well, it’s easier to be patient with that if you already get along with her. (One of the new staffers delights me, because she doesn’t let Lily get away with her conversational loops too often. This is a great way to expand my sister’s vocabulary and to help her achieve greater social fluidity; having support staff doesn’t mean she has servants, and I not-too-secretly enjoy watching her learn to handle a little bit of healthy resistance.)

Since then, some other things have happened, and my parents have received a 30-day notice advising them that the program will no longer keep Lily as a client. I have not seen the letter yet, being, as I am, very far away. However, I suspect that my sister herself has essentially nothing to do with the decision. So now my family has a month to figure out what’s going to happen next. Mom mentioned another program that they’ve identified as worth considering. And despite the anonymity which I’m attempting to keep here, I want to protect everyone involved even further, so I will simply say: we have contingency plans. I am not happy with the idea of any additional stress on my parents right now (diabetes? multiple sclerosis? and bringing the daughter with barely-controlled epilepsy and a tendency not to sleep through the night home?), but I am not yet at the point of asking my boss for permission to work remotely for a few weeks while I help cover Lily’s care. (And, wow, am I thankful that a lot of my work can be done from wherever I have internet access, particularly for this current experiment, where I’m about to enter a data analysis phase.)

This is the lovely and horrible truth: in the best case scenario, we are going to have some phenomenal staffers to help Lily with her day-to-day life…and those best people are the ones who are most likely to leave us after too short a time. Most of the staffers I’ve met have also been students, with dreams of becoming nurses, doctors, other medical experts, teachers, and more; many have spouses and children of their own, or plan to. And since the best case won’t normally be what happens, I know that the politics and finances of helping my sister live her own life will cause some enormous headaches over the years to come. And while my parents are able to be the backup support now, are able to fight for Lily’s right to live her own life, that won’t be true for all that much longer.

I can only hope I’m able to live up to their example when that responsibility passes to me.


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