On May twenty-seventh, by phone call, I was told I had to cut two hours a day of my 24 hour care. The two hour alone time went into effect that following Monday. I wrote an email, of course, with all my concerns, but the email was more about my feelings as to how it was brought to my attention. I made a snap-ish decision based on my comfort level. I went with taking the two hours at night, since I tend to have an active bladder in the mornings! But after I had time for the new schedule to sink in, a lot things started popping into my head. I would have to be more regular about when I eat my meals. Regulate when I drink. Plan to go to no more late night parties, concerts, movies, or plays. Unless I go with friends or family. In general, I will need to be more vigilant about how I use my time with my PA’s. I changed the two hour time block, to a hour one each end of the day. In case you haven’t added up the hours being cut, it adds up to fourteen hours per week. This is doable, I will make lemonade out of the lemons
Not more than two weeks into my “new normal” I got a call from the lead supported living manager saying she wanted to meet with me, along with my sister and another bigwig at the agency that supports me. She wanted to have the meeting on Thursday, but was thrilled to tell her that I work Thursdays! At first, I just thought they were coming to talk about my email, however, I knew it wasn’t what the meeting was solely about. In my gut of guts, I could see the axe lowering on my neck! Long story cut short, this agency has been eating $87,000 over the top of the monies I get from the state and federal budget. They have been eating the money because my sister is a loyal employee and they didn’t want to lose me. $87,000! I want to puke every time I think about that kind of money being spent on my care! Of course, the agency can no longer justify shelling out that money on me. SO, I have big decisions to make, and set into action, by August first! Lots of asinine and horrid suggestions were thrown on the visionary table for me to “ponder” over.
Here are my options so far. Move to another agency with a supported living program. But with everybody facing budget cuts, what are the chances another agency will take me into their program? I could downsize everything I own and move back into a group home. Not a thrilling option! Really not an option, unless it’s something totally appealing, which is very unlikely.
Nobody wants me to lose my apartment, however, this means I will have to stretch myself beyond what I ever dreamed I could do. Like staying alone eight hours at night, and installing a bidet. Hand and hand with the bidet idea, I would wear a gown that would spread open as a person sits down. In theory I would go commando at night. If I should have the need to use the toilet at night, I could transfer myself onto the thrown, do my business, use the bidet to clean myself, probably sit there to drip dry for a spell, and transfer myself twice more before getting into bed. When I calmly reminded them of the fact that most home accidents happen in the bathroom, they replied that they knew, and would equip with a “help I have fallen, and I can’t get up” necklace. Oh, so fancy! Fat chance the necklace would do me any good if I fall, crack my skull, and bleed to death. it’s as if the agency is banking on me getting hurt, and possibly becoming further disabled. If that’s the case,… Never mind, if I write that thought, it might come to fruition, and I wouldn’t be me anymore!
Actually, What it all comes down to, by August first, they’re hoping to trim 14 hours of paid PA supports from the day. Eight or so hours at night, and four hours during the day in addition to the two they have already removed earlier this month.
They said they were willing to buy technology that would increase independence, as opposed to having human PA’s. I was also encouraged to look at other agencies.
The way supportive living was set up to run in this agency, was to have the person going into the program interview an already pre-screened person that was interested in the job. If the two people thought they could live together, the live-in would get a flat stipend each month, live rent and utilities free, get one evening a week off, and one weekend per month off. You’re smart readers, can you think of some problems that might arise from this type of living environment? Regardless of its obvious deficiencies, I have been open to this situation for years and yet have gone four years without a person willing to fill this live-in position. Now the agency has given me about six weeks notice to find a solution and are pretending that this is one of the options.
Okay now, at Tuesdays meeting, lots of ideas were tossed at me. The following idea is just really asinine! There is a long standing relationship between a woman and her live-in. Let me say that I think most people would find it taxing to live with the person served.. With this in mind, the idea would be to ask each woman separately if they would be willing to forgo the apartment and the life they have built together to move into a bigger place, and be open to live with a man who is also in the program. If the women and the gentleman agree to do this, and if the agency’s accountant can get the numbers to work, the agency would buy a duplex. The three would live together, and I would live on the other side. There are a lot of ifs in this plan! I think my chances of becoming a millionaire are greater then this duplex idea! I say don’t mess with a good relationship!
I know what is happening here! I’m not a fool! They gave me all these unrealistic options, in the hopes I will pick the option that is best for them This is the oldest tactic in the book for dealing with disabilities! Do I have the strength to fight for my independence? .
No, I’m not dreaming. I just asked my PA to pinch me, and I didn’t wake up!
Please comment .orgif you have any ideas for how to deal with this situation. Its imperative that I do something very soon, before I am forced out of the supports that enable my independence.