Friday, July 27, 2012

Friday, Friday, Friday!

Maybe-Amy-house overnight visit is tonight.

I am so nervous.  So is she.  We need to get out of the hell house.

There is so much stuff that could go wrong.  What if Amy stresses out and they don't like the looks of that?  What is she's not polite enough?  What if they don't like her?  What if they realize they don't want to provide the level of physical care she requires?  What if they don't like me and they take it out on her.

This all sounds ridiculous, but the last house didn't take her.  They didn't like us.  They didn't like that we had filed complaints against her current house -- you know, the house where they neglect and abuse her, leaving her in bed, locking her in her room, threatening to withhold care, and withhold care.  And, the workshop at the last place (ok, and don't even get me started on how a workshop is not the long term answer -- at least not full time) wouldn't/couldn't provide Amy the physical care she required.*

Amy and I have been having long chats about what it will mean to finally live with peers, and how she'll need to hold herself to a higher standard in this new situation, which is truly a housemates situation rather than a dog kennel situation.  We've talked about how that is the only way this will work out for everyone.

Meanwhile a staff member told Amy that everyone hates working at Elmwood, and that it is because of her.  Of course, this sent her into an emotional tailspin of tears and frustration/hurt/anger (at the hurtful statement and that her caregiver would make such a hurtful statement to her in her own home), as it did me.  The next day the caregiver told her that if she doesn't act better (i.e. not respond with tears to emotional manipulation and abuse) that she won't get to move in to the new house.  I want to type a string of obscenities her now with a little picture of steam rising off my head, but instead I'll maintain a tiny shred of class by just telling you rather than doing it.

So the house visit.  I am so excited for her, and so proud of her.  She has grown  so much in the past year, and I love her so much.

The house visit will go fine.  

If it doesn't, I don't know what I'll do with myself.

*Stuff like this keeps coming up.  Has anyone else experienced discrimination against individuals who are also physically disabled when dealing with service providers to the developmentally disabled?  Amy tells me where she lives now will only allow one wheelchair per house, plus only a fraction of the houses are wheelchair accessible.  So lets say out of ten homes, three are wheelchair accessible -- then only 3 of 15-18 people can have significant physical disability.  And her workshop only has jobs for those without physical disability.  Amy still does them, but it is kind of a joke.

It's pretty clear at Amy's current house that her physical disability is a major inconvenience to staff, and that Amy's needs are actually wants.  Amy's disability isn't "charming" (I feel like some people romanticize developmental disability -- you know, the stuff like "she's so happy", "she is so loving", "if only I could see the world through her eyes" -- not that that happens at her current house), and she isn't easily warehoused the way her less physically disabled counterparts are.  

We used to joke that if we wanted angry, frustrated people to provide her half rate care we could have stayed home, but it's not really a joke.  Amy moved out because it wasn't fair to her or to mom the life they were living, barely getting by, barely fulfilling care needs.  It couldn't go on forever.  


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