He arrived with greasy hair, an otherwise nice looking man usually in clean clothes now showing up in dirty t-shirts, falling asleep in his chair, nodding off. Apologetic, he’d right himself quickly, mumble an “I’m sorry,” and then drift back asleep, again, slouched.
We asked what was up, what was going on, talked about needing to go to bed at an earlier hour, offered suggestions for ways to get a good night’s sleep.
We called home and asked if anything had changed. Mom, Dad, had no suggestions. “Maybe he’s still adjusting to living on his own?” they wondered aloud.
Weeks later, he said what it was: “Gary.” His staff watched TV all night in a small group home apartment where the bed faced the TV with only a thin wall to block out noise. But the thin wall didn’t block out noise. The TV was loud, always on, and he couldn’t fall asleep with Gary on the couch, the flickering glow of late night shows, the constant noise.
And because Gary was busy watching TV late into the night, Gary sometimes didn’t help him in the shower. Without Gary’s help, a shower couldn’t be had.
But why didn’t you say anything? we asked. Why didn’t you tell us what was happening? Why didn’t you tell Gary to turn off the TV and to do what he was there to help you with?
“Because he was a good staff” he replied.
At a recent event, “Samantha” attended with her staff from her apartment. The staff didn’t put on a name tag like everyone else did, didn’t sit with the group, didn’t say much of anything. The staff sat on the side of the room in a chair like a sullen teenager, her weight shifted to one side, her face down in her phone. Samantha enjoyed herself anyway, talking to others, enjoying the potluck, happy to have been invited, and happy to have actually been able to attend.
A sign up sheet was passed around towards the end of the night so that everyone could be invited to the next event. Samantha signed her name but didn’t have an email address, not one that she could remember or spell anyway. Standing next to her was her staff, keys in hand, ready to leave. “Will you write down your email address so Samantha can get the next invitation?” the staff was asked. “Naw, I’m good” she replied, eyes never raising from her phone.
I sat in a meeting once where no less than 4 paid staff members debated which day “Jim” should be doing his laundry. He’d been “non-compliant” through out his “span date” and was being “defiant” regarding his “daily living skills.” (For those of you reading that aren’t literate in service speak, meetings about someone’s life often sound like this.)
The laundry wasn’t being done according to the day of the week set forth in last year’s meeting. The plan needed to be amended, since staff couldn’t document that the laundry skill had been reinforced; that goal had not been met, and the skill was not completed 80% of the time.
“Why don’t you do your laundry on Mondays, Jim?” someone finally asked. Jim said quietly because WWE RAW was on, and he didn’t want to miss it every week just to do laundry.
“Could he do his laundry on Tuesdays instead? Or Sunday, or any other day of the week then?” I offered. Yes, Jim’s home staff team decided after some debate. Jim could do laundry a different day, but if it was changed in the plan, then it would definitely have to happen this year, did Jim understand this?
Katie wrote about getting manicures with Abby, and the process not being as “typical” as any other woman going to the salon. For Abby, it includes weeks of negotiation with various staff and supervisors who manage Abby’s life. This process is true of Jim, and Samantha, and of the man with Gary for a staff.
The problem here isn’t whether or not people are “good staff” or “bad staff.” In any given week a staff can be both. And as a “staff” I have been both in the same week, and both a good staff and a bad staff in the same day. The problem is the way this system has been designed to micromanage lives, in a way that prevents life (in the ordinary and mundane and in the extraordinary and beautiful ways we know it to happen) in general from happening. The micromanaged life of a person with a disability by a staff is often an impenetrable fortress built to protect and keep people safe (and sometimes, just keep people busy and scheduled). The byproduct of the fortress is often a world of isolation and anonymity.
Katie’s example of manicures is a prime one. Who among us would work for weeks to plan a one hour manicure with a friend if it included numerous emails, phone calls, negotiations with multiple other people, and then making sure that friend came back with a signed receipt and correct change? We’d just as soon say that a friendship with that person is too difficult, too high maintenance, not worth our time.
Peter Leidy, of Wisconsin posted this link a few weeks back and it tells of the service world making day to day life about as clinical as it can. The author, a father, writes about the difference between his life, and the way his son’s life is talked about. “A person’s entire life, everything they do, is jargonized.” I’d add, in addition to jargonized, a person’s entire life, everything they do, is often overscheduled by services, micromanaged, and clientized, and endlessly documented. It seems that sometimes, common sense as Jack wrote about and common speak go out the window, once we start thinking about the lives of people with a disabilities.
There’s a lack of creativity in the work that a lot of us do with and for people who experience developmental disabilities. Certainly it wasn’t too difficult — and it wasn’t in the least bit creative, to think that Jim could do his laundry another day of the week. But isn’t it also strange to think that he has to have one day a week dedicated to a mundane chore that any of us might put off in exchange for a little entertainment? It’s not at all creative to think that Samantha’s staff could have written down an email address so that she could be invited. It’s not that creative to think of ways to make manicures for Abby a little easier with a friend.
It’s as if what is natural, day-to-day and ordinary for me, a person without a disability, has been re-engineered to be complex and difficult for a person with a disability. Making plans becomes more difficult, getting to and from places more difficult, making choices more difficult, having relationships difficult.
Such is a life according to a rigid plan, one supervised by “good staff.”
In training with connectors, we’re required to do the same training as any other staff would do. Topics include An Overview of Disabilities, Bill of Rights, Basic Principles of Home & Community Based Services, Confidentiality, Incidents Adversely Affecting Health & Safety of Individuals, Universal Precautions/Bloodborne Pathogens, Emergency Response Procedures, Interactions & Interventions with Individuals. Also required, a background check, CPR & First Aid training all before any time is even spent with the person a connector will be working with.
The message is confusing. If you’re training on policy and procedures, safety and precaution, your job is then policy and procedures, safety and precaution. The job of a staff becomes a series of trainings that depersonalize the very person they will be working with in a very personal way. This is not to discount safety. Staff need to know what to do in just in case situations. And I think everyone should be CPR certified (not just staff of people with disabilities). But required training doesn’t necessarily include how to do a good job at helping someone live a life we’d like for ourselves.
In the examples of Samantha, and Jim, and with Abby, the staff were “doing their job.” “Gary” we all want to say was a bad staff. But that staff wasn’t hitting him, wasn’t stealing money, wasn’t being verbally abusive. (He was reported nonetheless and a new staff was hired.) But, it makes your wonder what other kinds of staff people that person had had for him to say that Gary, the one that wouldn’t help him with his showers and watched tv loudly all night was “a good staff”. “Gary” was a staff worth keeping around in this man’s opinion, despite his obvious flaws.
Samantha’s staff’s job description likely did not include “be personable; look for connections when out; share your email address to get invitation to more events.” It more likely said “transport individual to and from community outings. Ensure safety. Document…” Or something even more generic like “assist client to become more independent in daily living skills.”
Jim’s staff were also “doing their job” trying to follow the goals in his MyPlan. Laundry had to be done. Jim needed to have clean clothes. However, the plan, in it’s rigidity, didn’t allow for anyone to say, “wait a second, is there a better way we could be doing this?”
How might a staff person support Abby’s friend in making plans with her? How could they make life a little easier with getting manicures and going out to dinner? How could they help Abby look like a typical woman, with a purse and a wallet instead of an envelope labeled spending money in marker?
How could staff help Jim get his laundry done and keep watching WWE? How could staff work to make sure Jim isn’t watching tv alone– are there WWE meet up groups? Could Jim join one? Could Jim host WWE viewing parties at his house?
How could Samantha’s staff be curious about others at the potluck, get to know them in an effort to have them get to know Samantha? Could she share her email and make sure Samantha keeps getting invites? Could she put away her cell phone for a bit and talk to people with Samantha?
How could “Gary” the staff understand his job was not babysitting, but providing thoughtful care to someone deserving of respect?
However, in all the above examples, the hypothetical questions are just that. In reality, it’s not a “staff’s job” to help make friends, help life be a little more typical, nor is it their job to write their email address down if the person they support doesn’t have one. None of this is explicitly said training when you begin– to go beyond safety and precautions and really work towards what matters: a good, full life.
The message staff first receive is a lengthy training not in how to get to know a person better, make time together make sense and be productive towards supporting someone in having good life, but rather to document, ensure safety, and check off a list of services provided towards daily living skills.
We’re doing a huge disservice to Samantha, Abby, and Jim. And to staff people whose jobs have become disrespected, and demonized.
We can do better.
Part 2 will include stories of “good staff” who work beyond the safety and precautions and required training to work with a person towards a good life and how they’ve come to understand their roles as part of something bigger.