When The System Breaks Down.. Uniting as People with Disabilities

Please note in reading this I don't mean the medical system or psychiatric system. I have been working with my providers well and that continues. As happens it was a person hired to work with me as a home attendant. The way they acted was neglectful. Factually. Its not a matter of being angry. Its a matter of documenting it for the relevant parties. I explained my disability was physical. And it had been explained to them beforehand. They approached me as if I were a low functioning individual which honestly is the wrong way to approach anyone. And I explained that I needed to get out the car when it stopped due to akathestic spasms. And that I needed someone to walk with me the whole time. And what happenned was not rational. But neither is a seizure. I went through a full myoclonic spasm when I approached the museum after having entered a dissociative state (that was seizure like churchbells set it off although epilepsy has been ruled out and they are approaching the still unknown criteria of tardive psychosis, tardive dysphrenia and tardive dysmentia, anti-Parkinson medications treat it and it stops) and had respiratory convulsions and dysphagic choking spasms. They ignored me. And stayed on their cellphone with a friend. Including while driving (which is not allowed in New York state). I respect home attendants and who they are. They are not just "hired help" to me. I speak to them like an equal, a person who is there to help. I respect them. And they respect me back. Usually. This was an exception. But one of concern.
  I need not digress. You know me better than to post a rant. It reminded me why the Community Choice Act must be passed. There are many people that psychiatrists have deemed eligible to leave the community but are warehoused in adult homes or nursing homes. The psychiatric system does not have oversite over these places. I haven't recieved any disagreements from my providers. And there is a pending lawsuit in N.Y. state to close down adult homes but I am not a part of it as I try to specify my action to working with people. But I do support it. But my actions were to encourage building supportive housing for people with psychiatric disabilities in a nearby community. But there are people with physical disabilities who are in nursing homes including young people. I could be one. I refuse to be. But many people don't have that option. And as for the way the home attendant treated me. Well once that is passed people if as originally intended people can "pick and train their personal assistant". And people (as mandated under the Olmstead Act of the Supreme Court of 1999) "will be able to live in the "least restrictive setting". The problem is in no manner psychiatrists. Or doctors. Or any other medical professionals. Of course some people still are in the category of "dangerous to themselves or others" and need hospitalization. And some people need further supervision once released. I'd be the first to agree. But if someone is mentally recovered and has a severe neurological disability and that person happens to be me I think you know where I belong. Right here at home. By the computer. And hopefully out and about with a home attendant (or personal assistant in the updated terminology) who will work with me. And thankfully my family united around this. It brought us together. Google "Community Choice Act" and see if your senator or representative is signed on. If not I encourage you to write them or send them an e-mail. It has support
across both political parties. Its not controversial. And it saves money (google "Adapt" and find out).
  And I will be speaking to my psychiatrist about this. By TTY. I am recovered so he won't get a rant. Now that the Zofran is gone (it was quite helpful but due to some side effects I couldn't tolerate it, (as its FDA approved I would suggest people with tardive dyskinesia ask their provider about it if other treatments haven't worked) for the finalization of the case study it would be essential to know what happenned in that dissociative state. Everyone has said a picture speaks a thousand words but a PET scan of my brain undergoing that could help benefit science and as well see how the glycine has improved the way my brain functions in regards to standard symptoms. I could say today was a traumatic experience. But why focus on that? I am moving ahead to unite the family. Many of us have disabilities and we didn't always think of ourselves as fellow consumers. Now we are beginning to. And the more people that join in disclosing and identifying as people with disabilties and uniting around positive non controversial causes such as I discussed the more we will recover...