I sympathize with the parents or kinfolks of the people that have somebody in there. I know what they are going through, but on the other hand they don't look at it that it could be better for their loved one, and they could still be taken care of in the community. My parents were against me moving out of the nursing home, because they felt like that I was better off where I was. They said that I could not make it, that I would be right back where I was in a couple weeks, and here I am going on a couple of years on my own. They said "you can't feed yourself, go to the bathroom, go grocery shopping." I realize I can't do these things, but with attendant care I am making it like anybody else in the community. So I feel like the parents should wake up and realize it can be better. It will be better. We just have to give it a chance.
When you're in a State School or other institution it's hell because your life is not your own. You are under constant supervision. I don't care how old you are or how young. They treat you like you don't have a lick of sense. They speak for you. You don't get no respect. You got to go to bed when they say go to bed. You got to eat when they say eat -- or you go hungry. If you get hungry after supper and you want a snack, they say "sorry kitchen's closed." Then you got to go hungry until the next morning. An older person may not eat at all and then after a while they get hungry. I know a younger person or someone that has money can go and get a snack, but some people are too disabled. Sometimes they do go around after the last meal and offer you juice or a cookie but some people need more than that. People that have to eat pureed food, I've seen their food that looked like water, no nourishment just like chalky water. It was ice cold.
And when the state people would come and you would tell them about the food, they would always take up for the dietician and say that's the way its supposed to be. Or they would make it better as long as they stayed. Then they go and the nursing home would get a high rating. And then they would go right back to the way it was before.
People laying in their own urine. You would go down the hall and you would see the bed patients half covered. You go up to them and feel on their leg or arm and they would be cold and wet and you would go and tell a nurse they need to be changed and they would say it's not time to change them yet. They changed on the two hour shift so they might not go back for hours to change that person.
And to me that's a hell hole.
Medications At night you would hear people screaming harder, crying from pain. I know they can't give an overdose of medication, but they would be so ugly to that person, let them holler all night long with pain. They would close the door so they would not hear the noise, but being in an institution you can still hear the noise.
In a person who normally don't need medication, if you would get upset about something the first thing they would do is throw a damn valium down your throat so you would be quiet. What it all boils down to is they just don't give a damn about a person's personal life. They just want the money that's all they care about.
Every time all they talk about is people being let go from jobs if Schools are closed. Like on Friday (at the Hearings) they were talking about a lot of people loosing jobs. It's funny when people are talking about rights the first thing that comes up is the employees, which I know is very important. Everybody needs a job. This would eliminate jobs but on the other hand they could work in the same field only they would be working in the community instead of the warehouse (that's what I call an institution -- a warehouse). If we would get enough money in the community people could get paid the same amount as they would in an institution. If we get people out in the community then we could give them more quality care, because you would be working for only one or two people and you could give them more quality care than you could give them in an institution.
The reason I think State Schools should be closed is so people can have happy normal lives. I agree that some people won't be able to live all by themselves but you can arrange a small group home with supervision 24 hour care. And people who can't live on their own, I think they have the right to live in community as anyone else. That stuff about people being too disabled -- just because you are disabled don't mean you have to be hospitalized for the rest of your life! You're not sick, your body just don't perform like you'd like it to. And me and a lot of my friends have proved that already. We can live on our own.
Now that I'm living on my own I can do what I want and don't have to answer to anybody. I can come and go as I please and I have control over my life. (If I make a mistake so what? I like making mistakes. You learn from them.) I feel like a person not like a number or a puppy dog. In an institution somebody pats you on the head and says "oh you poor thing you're in here and we got control over you life." They may not say it in so many words but you can feel what they're thinking. I have a better feeling about myself because I'm making it on my own. I use attendant services and it's not always easy, but at the same time you have control of who you want and who you don't want. Like everything else you have to give and take, but that's everywhere; that's part of life. I would rather have that kind of worry than to be stashed away like a number.
To sum it all up, all institutions should be closed so we can get on with more productive and happier lives. And one more comment. They say it's cheaper to live in an institution ... that's not so. You pay your bills and you can see what you did your money, but in an institution you give them your check every month and you don't have nothing to show for it. There are costs besides dollars. It's not dollars its people's lives.