I'll post later about what happens today with the Coordinator. I expect she will be understanding. I really had an awful time this weekend and Jackie was really aggressive yesterday not sure what is up with that. He's having a hard time with summer is the best I can figure. Thank heavens he goes back in two weeks. :p

Thanks everyone, I appreciate your thoughts on this. I really am emotional still. :grouphug:

Dear Pam,
'Sending lots of hugs and good vibes. :hug: :hug: :hug:
Mari

Thanks Mari. :hug: We decided to start the fading process, so we're going to see services change from this behabvior assisting to in home supports again sometime in the next six to eight months I think. It just depends. I still feel like crap about Friday though. No pool today, but maybe Wednesday. Jack is going to take Jackie to join the boy scouts. That will be interesting. :D

Dear Pamster,
It seems that you feel better after talking to the Coordinator.
What does "fading" mean? Does that mean that the hours are tapered until the service stops?
What replaces it.


It seems that the aide and her cohort were trying to control the process when you clearly need to be the one in control of making the decisions.

M.

That's it exactly Mari, they told us we had to use the hours or lose them originally and then the aide was overbooked and we were barely using six hours a week and yet THAT was fine because it was due to her scheduling conflict but when we only wanted 3-4 days a week that was us being uncooperative. OR When she called in and barely made it out ONCE a week due to her having this hard time or that hard time.

At this last meeting they were pushing to come out for more hours and then also during our family time. I just can't stand pushy people because I have trouble standing up for myself. Somehow I was able to send a short non-rambling email about what we needed from them, and tell her we were ready to start tapering off the service, and the lady scrambled to see if I meant totally stop it or fade it as THEY say. It means to taper the services off-they think it's going to take us six to eight months but we want it to end within three months. It's been a real PITA dealing with these people some of the time and okay to deal with them at other times. But still I want my house to be my own again...

so are you saying you don't want the help at all?
I thought they were helpful for jackie.
I am ignorant about this, what were they doing with him? for him? interact?
beth

That is a shame to have to face losing support service.
With my nephew the Aid became a part of the family for all the time she was with us. There was a TSS in school and then the gal that got Josh off the bus, help with dinner, bathing , There were more hours for nights for sitter type care on Thursday.

It did not seem intrusive but like a family memeber tht pitched in and we did not need to address needs,
It was a big supper table. I would co care too for the inbetween until the aide got there. Make supper, home work or some games, supper together. I assume this is not what generally happens, but it worked out really well for my nephew.
di

Pam

Is there a different agency you can use.

Donna

Yeah we are getting In Home Support aides soon to take over for the behavior people, it's just that the behavior service costs the state more so they naturally want to get rid of it. That is why this is coming up right when it did I think. If they try to label us as uncooperative I will FIGHT it tooth and nail. I expect the new aide will be more like what you describe Di, I hope it is anyway, we had it before and it was intrusive then too. Just depends, Jack is going to try to go back to work soon and we'll really need it then. :) Not as angry today and went to a free dental clinic and the dentist saved one of my really badly cracked teeth! So that was awesome. :)

Good for the saved tooth.

And I hope the in home care is much better for you.

Remember to let them do most of the work.

Donna