Friends for Hire?

For those with severe I/DD, relationships with direct care staff are primary.

Posted Oct 14, 2018

My son, Jonah, has enjoyed many strong relationships over his 19 years, with amazing people I’ve considered it a privilege to know. They’ve drawn endless pictures of Ernie, Bert and Barney; taken him to the water park, the beach, and out for countless hamburgers and French fries; made playlists for him to spin to; even dressed up with him on Halloween as Kermit the Frog and his doppelgangers Kermit the Forg, Kermit the Grof and Kermit the Gorf (from a particularly entertaining skit featured on The Best of Kermit, which was one of the first VHS tapes Jonah ever watched).

            And all of them were paid – as teachers, home aides, or hospital technicians.

            Relationships like these are routinely dismissed as inauthentic and inferior to “real” friendship. In its position paper “Keeping the Promise: Self Advocates Defining the Meaning of Community Living,” the Autistic Self-Advocacy Network specifically defines “community” as a place where autistic people “integrate with people who don’t have disabilities, and this does not mean staff.”

            But what if that’s what Jonah prefers? Like all other parents of severely autistic children we know, we tried to facilitate friendships for Jonah from the time he was a baby. When he was very small, we took him to toddler playgroups, music classes and playgrounds, and asked our friends with neurotypical children his age over to swim and bounce on the trampoline. When he was in school, we invited his classmates to elaborate birthday celebrations featuring water slides and inflatable castles, and dutifully took Jonah to their parties.

            There’s something particularly sad about those occasions, in retrospect: the gluten-free cupcakes, the carefully chosen gifts the children often had no interest in opening, and the kids –completely ignoring one another, as if they had never met; each one chased by a parent as he or she scrambled through tunnels or banged on arcade games at Chuck E. Cheese, because these venues always have so many exits, and all it takes is one distracted moment for a persistent eloper to disappear.  At the time, though, we weren’t sad. We were hopeful, and persistent, and we did it for many years, until one by one we all stopped.

            Now, I suspect Jonah is incapable of friendship. Not of love, or affection – he is quite demonstrative with our family and certain caregivers. And I would never minimize the importance of these relationships, to him and to us – I know from the love my neurotypical children have for their old nanny that financial compensation in no way precludes deep and meaningful connection. But I don’t think Jonah understands the social reciprocity that defines friendship. He never seems to think, I wonder how Mommy is feeling? What does Dad want to do right now? How can I help? Let’s take turns. Everything, for Jonah, is about Jonah. His favorite adults – and they are always adults – don’t mind. We know what he loves, and we reliably follow the script. We know how to make a “fun list,” draw “Ernie half-a-hand,” sing the “We all go home together song,” and order lemonade with no ice. In return, we get…..big smiles, sometimes sloppy kisses. It’s more than enough, for us. But that’s not what real friendship is about.   

            This is one reason why parents of kids like Jonah are so critical of the fictions spun by inclusion advocates, in which our children are welcomed into neurotypical neighborhoods and invited to barbecues and Christmas parties. Not only, in real life, are these invitations rarely forthcoming, but – more importantly – our kids wouldn’t want to go anyway (or maybe they wouldn’t mind putting in a brief appearance, if the right snacks were served).  If these advocates took the time to get to know our kids, they would realize that one of the single most important contributors to their happiness is and always will be the quality of their direct care staff. The size and location of their houses, even the type of activities that fill their days – none of those factors matter nearly as much.  

            Acknowledging this reality opens up critical common ground for advocacy. Behind every horrific act of abuse or neglect is not a building or a program, but a direct care worker who never should have been hired to work with this vulnerable population. Yet candidates for these positions require little more than a driver’s license and a high school diploma. These demanding jobs rarely pay a living wage, provide minimal training, and offer no discernible career track. Little surprise that turnover is tremendous. One of Jonah’s favorite aides reluctantly left the field for an entry-level job in a massive corporation, simply because he wanted to get married and couldn’t support a family on his meager salary.

            Every single advocate who cares about the intellectually and developmentally disabled should be fighting to build the strongest direct care workforce possible. Primarily, this involves lobbying state and federal governments to allocate more money for salaries. Working with individuals with severe I/DD and the aggressive, self-injurious, destructive and wandering behaviors that often accompany this diagnosis is difficult work, requiring patience, flexibility, and empathy. Those entrusted with these responsibilities should be compensated accordingly, and these higher wages should be attached to strict training and performance standards. It’s baffling to me that truck drivers, accountants and construction workers – just to name a few – are more highly regulated than workers with literal life-or-death power over often incapacitated children and adults who cannot report mistreatment. Desperately needed is the kind of oversight facilitated, for example, by Nicky’s Law, a proposed bill in Massachusetts that would create a registry for abusive caregivers and prohibit agencies from hiring anyone on that list. But, although it enjoyed popular support, the bill was left languishing in the House when the legislative body disbanded for the summer.   

            Do I hope one day that Jonah experiences a real, reciprocal friendship? Of course. But I also know that, should this development ever occur, it most likely would be due to the very gentle, very persistent efforts of an amazing aide – the kind of committed, compassionate direct care worker that I hope, more than I do for anything else, will always be part of my son’s life.