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[Instrumental music]
Joshua is 27, he'll be 28 in January. When Josh first came to me,
I was working at a hospital in Chicago. He came to my door at three o'clock.
I was supposed be at work at three and called and told them I'm gonna be a little late.
I don't know how late but I'll be there. I had my best girlfriend sister
to come over. I said I need you Leola, you gotta help me.
She said, "What I'm going to do?" I just said come. So when she got to my house, about 10 minutes
before Josh came to the door. I explained to her that Joshua
is coming and he's a special need. And I'm going to need her to come stay a couple days
to help me transition him into my home.
When he came to the door, he came through with his grandmother
and his mom and
I wanna say maybe two other people. And when he got to the door, he looked all
around my house. He looked everywhere. He ran to the fridge. He opened up, he checked it
out looked up and down like food. And I said
oh my god he's so busy. I said but
Leola can you handle him? She said yes, because I gotta go to work.
If I knew, because they was supposed to arrive at nine in the morning; but they didn't arrive
until after three. I said if I had known this, I would have took off today.
I left, I went to work. I was so nervous. I called
every half an hour. I said this is the day I'm going to get fired because
I don't normally be on the phone, I said but I'm so nervous
cuz I got me a new kid. And I need to know how to deal with him.
She said don't worry it's under control. So when I got home that night,
she said only thing,
I got off work at 11. I worked in Illinois but I live in Indiana.
I get home about 12:15, she said he won't go to sleep. I said okay,
so me and her, we set up and we just watched him and watched him
and the next thing I know it was 8 o'clock in the morning. We were still watching
him. I said they never told me that he had a sleeping problem.
I said I got very little history on him but it went on for about a week.
He might sleep an hour here, an hour there.
So I guess maybe it's the new environment why he won't sleep.
So then I called his case manager. She came down to visit
and she was so surprised that he was sitting in a chair
with us so still. She said I'm so used to him just moving non-stop.
I said well I didn't get much of history so she started telling me different
things about Josh. And I have never heard of a medicare waiver
and she explained that to me. I said how do I get it started.
She said his is already in place. I said
okay so what do I do. She said I'm gonna come back down
in about 30 days and I'm
going to take you step-by-step how to actually use his waiver and she did.
When he first came to my house, I had an agency who gave me
a $1000 a month to take care
of him. I gave six hundred a month to my caregiver
to watch him while I go to work. I said okay I've got four hundred of month to
take care of him. And I said okay he's in diapers; he
needs plenty of skin care and all this. I would take him to the doctor, oh the
state don't pay for this. The state don't pay for that. So all the money
I got, I used it on trying to keep up with his diapers and his care
and stuff. And I said oh wow, I need to work overtime sometime to keep up
with the money that it's gonna take to take care of him. I went to my agency and
they was like outta sight outta mind. They really wanted me to
put me in a room and say this is what we're gonna give you, now you shut up
and don't you say nothing else to nobody else.
So I was like boy, this still isn't enough so he gave me an
increase of six hundred dollars. They gave me the money to pay for my
caregiver to take care of him. Well once
Gwen put his wavier in place, it worked out very well for me.
I found it very frightening but
I guess I was very lucky because I had a case manager
who had been with my son before he came to my house.
And she followed him to my home.
And she started educating me first and tell me you need to do this,
need to do that and it took off
to the point that I would even go to conference on the way in San Francisco
and other states to find out how
they're programs is working in them different states.
And gave me even more knowledge about people with disabilities.
I just fell in love with him and
to watch him grow was so exciting to me in my life.
It's like it woke me up to a lot of things that I never knew.
And to work with him as time went on, I'm found more and more
about people with disability knowledge that it's makes me wonder
what happened to the people who don't have someone to help them.
Like me, I'm very involved in my child's life.
I started off with the school system and it helped me to learn
a lot of knowledge about the school system in the state of Indiana.
Because I became the advocate for
people with disability in the school system to help them with their
IEPs. I have so much knowledge that I didn't know that I have learned over
the years. And there's so many people out there that really need
help with disability. And people don't understand
that it takes knowledge to help someone to get from A to B when you don't have
an assistant. It's so frightening
to watch people with disability who's trying to figure out what
to do next with their life.