That's ok: I don't need to shower

So I just had my reevaluation for my participation in our state's Personal Care Assistant program - the program I use to pay my mom for doing things like buying groceries and helping me shower.  I've been in the program for about 6 years or so, and every time the people come out - and it's never the same people - they tell me something different. At my initial intake (done 3 agencies ago), the nurse and the case manager came together, sat with me and basically explained how I didn't qualify for 3/4 of the stuff I really need help with - like cooking and cleaning and whatnot - because I live at home, and "the other people you live with are expected to pick up those tasks."   That was news to both them and me, I assure you.  And considering that one of the stated goals of the program is to "help clients live as independent a life as possible", kind of contrary to what we were supposed to be accomplishing.  But they were right - six years later, I still am not technically approved for the majority of what my actual needs are: someone to dust when I'm not around (bc of the asthma); somebody to bring groceries into the house and maybe get them made into a meal once in a while; all the toting and lugging of me and my chair to various non-medical appointments, etc. 

We filled out the paper work, with our best case scenarios, and nobody was surprised when the decision came back from Mass Health approved for significantly less hours than were necessary.  Significantly less hours than a qualified nurse and my own doctor considered necessary, I might add.  But I took what I could get, because, especially at that point, any financial help was better than the nothing I was getting. The kicker, in regards to my hours, is that I was approved for 30 minutes of "medical related" travel time A WEEK. 

30 minutes of medical related travel time happens at least 3 times a week, and that doesn't even include the actual appointments.


At another evaluation, the nurse told me that I qualified for an additional stipend, because of a new part of the program, and that she would put in the paperwork for me.  She didn't, and by the time I found out that she hadn't, the state had suspended that program, and I could no longer apply.  Last year, the nurse told me I was approved for two years, and wouldn't need a new evaluation until 2013.  I've had two people come out since then, both for evaluations. 

Today's nurse went out of her way to tell me that Mass Health is dramatically cutting back on hours, to the point where she's had to tell clients that their hours were cut back because "risk of falls is anticipatory language, and Mass Health doesn't pay for what we might anticipate our problems to be, but what they actually are."  Gee, there's great budget reducing deduction, state agency --> cut preemptive funds to protect people from falling, client falls and is badly injured, now needs MORE services then ever (so you spend even more money than you would have originally)!  Ignoring the fact that the client is a real person, who will have additional pain and suffering because of the fall (and I'm only ignoring it because I know they are), what kind of logistical financial sense does that equation make??  True facts: I hated math in school, but I still managed to pass, so I know that it makes zero actual sense! 

Anyways, she gave me the spiel about cutbacks and then said "So I hope I don't have to make any changes in your eval, because the only clients that I've had them deny are ones that I've asked for adjustments on.  So I try not to rock the boat."  She said that before we had started going over what help I need and when I need it, she said it at the bottom of every page, and she said it again as I was signing my (blank) form, so what are the chances that I told her that I felt like I needed more hours?  Even though I really do need more hours, and need adjustments on the aspects of daily living portion that are still wrong from five years ago?

I don't think you even have had to pass math to guess, but the chances of that are also zero!

There's so much talk in the air lately about benefit scroungers & welfare layabouts - people who are scamming the system and cheating 'the tax payers' out of their hard earned money.  There's a lot of talk about cutbacks to essential social services and financial supportive programs.  You can't read any sort of reliable news source that isn't telling you about how the social safety net is being dismantled in Country A or Country B.

And if you read through any of the blogs from last week's brilliant Blogging Against Disabilism Day, then you probably saw how much these cutbacks are affecting the lives of very real people.  Here's just one more subtle example: I wasn't denied any services by the program I'm in, or by Mass Health, or even by the agency that administers my participation in the program.  But I was told, again and again, that to ask for the amount of help I truly need could leave me without the help I already have.  That to ask for more is to put it all at risk, and that was enough.  And it wasn't the nurse's fault - she was honestly trying to be helpful, because she knew I needed services and didn't want to see me without anything.  But when the climate is "our state is cutting money where ever it can find it, and if that means a person with disabilities falls (or goes without meals or showers) because of it, oh well: unintended byproduct of cost-cutting Necessary Measures!", then people with disabilities know that they have to be extra cautious, to settle for what they have, even when it's not good enough.

But no, those commenters who were sure that there "isn't STILL discrimination against the disabled": I'm sure you're right.  I'm just being overly sensitive.