I find this to have a calming and grounding affect on me – especially when I’m getting ready to make an important phone call or contact with someone, or attendance at a meeting – on Max’s behalf. It reminds me of WHY I must do what I have to. I am centered “here”.
You might not know this about me, but I don’t like conflict or confrontation – but I do what I do for Max’s sake. I decided after he was born that I would always be his voice. I’d be his voice until I was able to give him his own voice.
Max will have his Dynavox Tobii set up in January and I expect that he will be using this device across all environments. I’m looking forward to be able to give him choices for music and stories as well. I am so happy that he will have this opportunity. I realize that there are many nonverbal people in the world who have complex communication needs, that don’t have this. That make me very sad.
“I WILL FIND A WAY” is my Mantra in that regard. Whatever is needed to get the job done. It was tough this past week and I have a lot of work to do this coming one.
I like stepping outside of the real and present world, and pulling out of myself that part of my being that sees beyond the mundane in this world. I like to stand to the side and let the ideas flow.
Max doesn’t have Self-Determination in his life. His life is extremely limited. He is not given opportunities to make choices. It’s a same-day, same-shit kind of existence.
Max has a CMH “support coordinator” (they go by other names too….case manager, CMH worker, etc.), but there is no coordination of the supports that he should be receiving to be self-determined.
County CMHs (under the auspices of the Behavioral Health and Developmental Disabilities Administration- Michigan Department of Health and Human Services) are suppose to be a “system” that supports self-determination. They don’t. Go ahead, ask anyone who has an child/adult (especially one that is severely, multiply-disabled) in this “system”, how it works for them. There are some real human, real life problems out there, and the people that could make a difference, are doing nothing. They seem to have a lot of “meetings” and there’s no action. There’s no trickle-down effect. There’s no meaningful reaching out to stakeholders (individuals/families). They really don’t “do” self-determination. At least not without a fight from individuals and families. It’s exhausting.
Locally, several years ago, it WAS getting better. They were going in the right direction, and than people started to retire and “new” and younger people (social workers) came on-board at the CMH here.
They were inexperienced. They had absolutely no idea what they should be doing for those that they were suppose to be working for and on behalf of. They still don’t. They were not and did not want to become familiar with the uniqueness of those that they “support coordinated” for. They didn’t want to educate themselves any further as they progressed in their “careers”. They either never cared, in the first place, when they went into this particular field (human services) – or they were and are just lazy. Maybe “Social Work” sounded kind of good and easy, and something that they could learn all about in college, and BAM! off they went and they got paid to do whatever they were told to do (indoctrinated), forgetting WHY they were in the position that they were in. Forgetting or intentional, it’s all the same. It’s wrong on such a fundamental human level.
I take great offense when it comes to those who have such control over the lives of others – their very quality of lives; their comfort and safety; their happiness – and blow it off.
I’ve seen Max ignored totally between annual Individual Plan of Service meetings (IPOS). If I never said anything; if I never addressed any problems or issues, there would be NO communication at all. I absolutely hate the group-home mentality. Even if a person has no family or friends checking in on them, they have a right – yes a RIGHT to be treated with kindness and dignity and care.
They (CMH’s) KNOW about self-determination and they’re suppose to support that in the mental health system – as Max is someone with a developmental disability – but per usual, he’s even worse off than others, as someone that is nonverbal (has complex communication needs) and non-ambulatory, living in an antiquated living environment that still thinks of itself as providing the basics of what he needs to survive (be warehoused) and that all they have to do. The bare minimum.
That’s SO wrong.
I’m sure that this topic will come up again down the road, because I am trying to make positive changes on Max’s behalf, even as I see things worsening.
I’d really like to hear from other individuals and families; guardians and caretakers, care providers.