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As I said in my last blog, this past week has been a roller coaster of emotions.

Wednesday came and I had  a quick morning walk with Kodiak, got home and the furniture delivery went off without a hitch, though one of the delivery men didn’t listen to me and came right at Kodiak, reaching at him, right in front of my chair and there were some barks and growls before I could convince the guy that trying to pet my dog is not a good idea! He was protecting me in my power chair.

Shortly thereafter my son’s habilitation aide came and they left to get lunch and do some father’s day shopping. They only had 2 hours to get everything done they had planned and we were to have a service coordination meeting at my home.

When they got home, I leashed Kodiak and took my position across the room from seating, so the habilitation aide’s new supervisor could come in and sit down, having alerted us that she is ‘afraid of dogs’ (though I learned later she actually has a dog – go figure!).

My son didn’t want to meet her. She was ‘replacing’ someone he dearly loves and had a fantastic relationship with. He got up and went to his room, some convincing had to be done to get him to come out and sit down with us.

This was our first time meeting this woman and she started off by commending me for the letter I’d previously written in support of the agency and staff that worked with us (by the time the meeting was over I wished I could rescind that letter) and acknowledged my support group I’m trying to get started and my experience as an advocate.

There was a nice exchange between she and my son, as he spoke to her about his previous experiences, what he had done with his aide, what he had done on his volunteer job, etc.

Once again, we were asked if we minded them training a ‘back-up’ for his aide. Did we mind her attending outings with him and his aide, so he could become comfortable with her in case his aide would become ill or leave. LEAVE? She said “LEAVE” in front of my son, who has serious abandonment issues, who has lost every good aide he’s had because they ‘leave’ their employment and he has to start over again with someone new.

We all looked at one another, panic set in and his aide immediately started to reassure she wasn’t leaving or going anywhere. I was immediately suspicious because two previous aides had guaranteed us they were staying with us and within weeks had taken other positions and his current aide and her previous supervisor had known for a month that the supervisor was changing positions and ‘leaving’ my son, but we weren’t told until the last meeting we had with her. No time to get my son adjusted to the idea, no opportunity for that individual to bring the new person to a meeting to introduce to my son… more or less acting against everything we had ever talked about that was “good to know and do” to help my son adjust.

My son resisted the idea, saying he wanted to think about it. I offered a number of options for introducing this ‘back up’ aide to him, but he wanted to think about it. I fully support that.

Then the floor literally fell out from under us!

This person I had met for the first time that day tells me that the agency’s rates had been cut and because they employ only staff with Bachelor’s Degrees and pay them accordingly, they would like to know if I would be willing to contact someone at our local Mental Health/Intellectual Disability organization and advocate for this agency to be paid an ‘enhanced rate’ for my son’s services because he requires the services of a more experienced individual, as opposed to a High School graduate or college student, as our experiences with both in the past have been horrendous.

I had never heard of this. We have spent all our time since receiving waiver funding for his services negotiating with the facilitating agency over how many hours of service we can get and still remain within his budget. When rates have been raised we’ve had to sacrifice the amount of time he’s able to receive services. I’m constantly being reminded of the waiver regulations, our budget and the limitations put upon his services as a result.

I hesitated, as I hadn’t heard of it and was a little put off by this agency asking me to advocate for them with a county office. My first thought when she said rates were lowered was, ‘great, that means we can go back to our previous number of hours of service, rather than the reduced number of hours.’

Then she leaned forward and told me she shouldn’t be telling me but was going to tell me because she respected me, that her supervisor had just confided to her that due to the rate cut they may have to drop the Home and Community Based Services (habilitation aide) completely, leaving 20 clients without services, including my son. She indicated they could continue to provide his services if I could advocate for the ‘enhanced rate’.

I told her something didn’t feel right about it, why should he get a service, because his mother is an advocate, that 19 other people aren’t going to get?

This is when the earth began to crumble…. she said, “I thought you loved your son enough to advocate to help us…” I don’t even know what else she said in that sentence or with that particular breath… “I thought you loved your son enough…” “I thought you loved your son enough…”


I told her that was an incredibly ‘guilting’ thing to say, implying if I didn’t help them get a higher rate I didn’t love my son enough? WTH is that?

Immediately she and the aide went into damage control… she didn’t mean what she said, she misspoke, she would never say something like that to me (SHE JUST DID), she didn’t mean it the way it sounded.

All I could do was cry and shake. I was furious! So incredibly hurt! I felt so manipulated, blackmailed…. betrayed! This agency, I had written a letter of support for, talking about how incredible the previous supervisor had been, the relationship the aide had with my son, had just put me in a position of either helping them attain a higher pay rate or possibly lose the service that’s been the most help to my son.

The supervisor started to cry. The supervisor tells me she and I need to meet together because “you don’t know who I am.” Oh, I think I just got a wonderful snapshot of who the hell you are. I don’t think I want to know any more. I don’t need to know any more.

I couldn’t believe she talked about something like that in front of my son. It was left with me telling them we should have a meeting with their agency and the county.

I was stunned to realize that this agency is a ‘for profit’ business, rather than a non-profit, which has been my misconception. That makes this plea for money even more obnoxious. I had thought that they were different, in that they put the individual first, above all else… well I got my eyes opened, painfully so!

I talked to a supervisor at the county office that manages the waiver funding today and she explained what I was being asked to do. She said there is no way to justify an ‘enhanced rate’ for my son, as there is nothing about his diagnosis that indicates a behavior that would require a person with a degree deliver his services. The fact that previous staff persons who didn’t have a degree have impacted his progress negatively speaks to a staffing problem, a training problem, not an issue my son has that would require a more educated individual work with him. That is an honest assessment of the situation.

The supervisor I spoke with at the county office also told me she had already had this discussion herself, with the supervisor of the provider agency either a week ago Friday or this past Monday. She said she hoped she wasn’t approaching other parents with this proposition as well because it’s not the parents’ problem to solve, the agency needs to negotiate with the Office of Developmental Programs, explaining that they can’t manage to continue services at the reduced rate they’ve been assigned. It’s their job to manage their own budgets, the rates they are assigned, not the parents, not the families and honestly the families shouldn’t even know their difficulties, unless the program is going to be ended, then the parents should be notified so they can make another choice.

I totally agree and basically said the same thing to this individual when she made this proposal.

What ever happened to professionalism? When did that become an outdated thing? When did that become a dirty word?

The ‘advantage’ of my advocacy skills belongs to my son.

What a week! That’s not even the half of it!