Transcript: 3 Yr. Plan Public Hearing - Dayton
Posted by: Alan R. Cochrun
Date Mailed: Thursday, June 18th 1998 09:33 AM
Date Mailed: Thursday, June 18th 1998 09:33 AM
PART: 2 of 4
REFERENCE: e99d83ed
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1 can.
2 The more of us that speak up,
3 the more chance that we'll rule our own
4 destiny. Please don't give up because it's not
5 consumer driven right now, because we have to
6 aim for that goal and keep heading toward it,
7 whether it's baby steps or giant steps. We
8 have to keep moving forward and the only way
9 that will happen is when people with
10 disabilities say, pay attention. I'm, I'm
11 where you get your paycheck.
12 MS. TRACY MANKINS: I invited
13 them to, to contact me and that I would keep
14 working with them. I heard nothing. I
15 don't know really how, how to penetrate that
16 and --
17 MS. LINDA GOOD: I would be
18 happy to pass your name along.
19 MS. TRACY MANKINS: That would
20 be great.
21 MS. LINDA GOOD: Thank you very
22 much. Next is Darrell Price. Darrell, will
23 that mike do or do you want this one?
24 MR. DARRELL PRICE: This is all
25 right. Okay. My name is Darrell Price and I'm
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1 also a member of Dayton ADAPT and I've been
2 with the access center full time for just over
3 a year, and my concerns are so broad that I,
4 I'm not really sure where to begin.
5 I think that, just I really have
6 two perspectives, I think. One is as just a
7 person with a disability and a person who has
8 done advocacy for free, and the other is as a
9 staff person at our center. And uppermost on
10 my mind, you know, working at the center, one
11 of my concerns is that with the resources that
12 we either have or have been able to draw from
13 or know to draw from, including the SILC, we're
14 just not able to do justice to the independent
15 living movement and to fulfill the core
16 services that we're supposed to provide for
17 people.
18 I mean, I alone have
19 responsibility to all the core services of the
20 center, plus outreach, so, you know, Maria
21 mentioned ODHS hearings regarding the changes
22 in the waiver programs.
23 I sat on an advisory group for
24 about a year for the changes, and I really felt
25 like I was more or less out there on my own
BRITTON & ASSOCIATES
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1 trying to learn the system as it is, trying to
2 look at the changes that ODH was proposing
3 critically and not just accept them out of hand
4 due to the lack of my own knowledge base about
5 what the system is and what leeway they have to
6 change.
7 So, I mean, just in that one
8 issue alone, I mean, I can spend about half of
9 my time doing research on the proposed changes
10 that the state human services and, you know,
11 really be able to get involved in that advocacy
12 role with the kind of attention and knowledge
13 base that it deserves, so when they come back
14 to us after a year when it's basically no
15 change at all, I can really be a better
16 advocate for change. That's really going to
17 mean something.
18 And I just, I don't do that role
19 alone. I don't have the time that it takes in
20 just that advocacy role to really be the kind
21 of advocate that I know I should be working at
22 a center.
23 And when I devote time to that
24 specific role, then other core services suffer
25 that are just as important to that ultimate
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1 mission.
2 So I guess if I wanted to put
3 that in concrete terms, I don't want to say
4 things just like throw money at it. Because I
5 know that's not going to work.
6 I think some simple things to at
7 least start out with would help us as centers,
8 and I think we need to network more and share
9 information with each other as centers and with
10 the SILC, so I as a staff person could do that
11 advocacy job better and wouldn't have to be
12 concerned about spending so much time trying to
13 check everybody's facts, not accepting things
14 that I'm handed out of hand.
15 Another thing in the development
16 of, you know, other core services like
17 independent living skills training or peer
18 support, I don't know what role the SILC would
19 play in providing feedback from, you know,
20 other centers, other training materials that
21 are available.
22 It's just that there's so much
23 to do and having responsibility to all those
24 services, I never feel like I can do anything
25 more than kind of make everything up as I go
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1 along and everything is always a crisis
2 situation.
3 I'm, there's just not enough
4 time to do justice to the mission of this
5 center with the resources we have and that's
6 really the point I want to make as far as staff
7 person.
8 And, I guess, you know, just in
9 terms of my perspective as a former consumer
10 and as before I got into, you know, independent
11 living as a job, I just think I can really see
12 that, you know, that situation being as it is,
13 even, even with my best intentions, there is no
14 way that I can really be empowering to people
15 and, and sell them on the idea of getting
16 involved.
17 I know that when before I got
18 into independent living centers as a job, I
19 didn't know what independent living was. I
20 didn't know what centers did. I didn't even
21 know they were out there, and I was doing
22 advocacy for passage of ADA.
23 I got over 4,000 letters signed
24 to send to congress at Kent State for passage
25 of ADA. It was in the paper. You know, my
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1 center never even, I never even knew that it
2 existed out, you know, where I was going to
3 school then, so it's not to brag; but I'm
4 saying, even in, even in my own community, I
5 know that there are people out there that are
6 doing advocacy on their own, and they're good
7 and they have skills and they have a lot to
8 contribute to the mission.
9 But I, you just, there's not
10 enough resources to really reach out and bring
11 these people together like we have to do, and I
12 just, I just feel like unless there's some way
13 that the SILC can support us in developing the
14 core services so I have more time to go out
15 there and bring these people together, that
16 already want to do advocacy and right now
17 aren't able to look at the center as a leader
18 in promoting that systems change, then I just
19 don't, I don't see any hope for doing anything
20 other than this sort of crisis management, drop
21 one thing and go to another frantically, you
22 know, every day.
23 I want to focus on the mission,
24 and I want us as staff to have enough support
25 to be able to carry that out in the way that it
BRITTON & ASSOCIATES
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1 was intended to do grassroots organizing so
2 we as staff aren't leading the change, but
3 we are supporting the people in the community
4 that already want to lead it and to have them
5 build it from the grassroots like it was
6 intended.
7 MS. LINDA GOOD: Thank you,
8 Darrell. If anyone, if anyone hasn't signed
9 this who would like to testify or make comment,
10 please come forward and sign or wait till the
11 end and sign up then. Carolyn, is it Brashear,
12 Brashear?
13 MS. BRASHEAR: My name, my name
14 is Carolyn Brashear. I'm also a member of
15 Dayton ADAPT. I have been working along with
16 Maria Matzik and Darrell Price in a problem
17 that has gone on for over two years.
18 My daughter was nearly killed.
19 I'm speaking for by daughter, Colleen Brashear,
20 because due to transportation problems for
21 people in wheelchairs, I couldn't get her here
22 today.
23 In April of 1996 my daughter was
24 nearly killed in the nursing home that she's
25 in. I had to place her in this home against my
BRITTON & ASSOCIATES
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1 will about 12 years ago when I had to file for
2 divorce.
3 Since then the care in that
4 home -- and what bothers me is it's considered
5 one of the best in Ohio -- the care in that
6 home has deteriorated to the point where it
7 should be sheer embarrassment to anyone who
8 says they're employed there. However, I feel
9 that there's no one that we can turn to.
10 And when I look at ACIL, to me
11 that says, Access Center For Independent
12 Living. I've been told there's nothing they
13 can do for me. I was told that in Columbus
14 when I was at the meeting with Steven Gold.
15 All right.
16 Now, since April of '96 they
17 dropped my daughter off the side of a bus due
18 to the lack of attendant care, and I'm aware
19 that attendant care is a problem everywhere.
20 However, these people are paid
21 at least $73,000 a year to take care of my
22 daughter. She doesn't get $50 worth of care a
23 day. Naturally our instincts were to start
24 looking, seeking other care.
25 I placed her there thinking it
BRITTON & ASSOCIATES
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1 was the safest place I could put her until I
2 got myself together, and we could start
3 planning other things.
4 I met her at the emergency room
5 at Grandview Hospital in a mess that I never,
6 hope to God I never have to see again. Now,
7 these are the nursing homes that they claim are
8 monitored, where people are cared for 24-hours
9 a day.
10 At any rate, in those two years
11 I have been looking for an apartment for her to
12 get her into independent living or
13 semi-independent living.
14 I finally found an apartment in,
15 or one that would be ready soon, the latter
16 part of '97. In order to get prepared for my
17 daughter to move into this apartment, I
18 contacted Ohio Department of Human Services for
19 an assessment.
20 You don't move anyone out of a
21 nursing home without equipment. She's
22 disabled. She's not sick, but she does need
23 certain equipment.
24 ODHS with tongue in cheek came
25 down knowing full well the assessment would be
BRITTON & ASSOCIATES
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1 denied. It was a total waste of 24 hours and
2 they said that the assessment was denied
3 because we didn't have an exact departure date
4 from the home nor do we have an address.
5 Well, do you, which comes first,
6 the departure date or the knowledge that you're
7 going to have the necessary equipment to set up
8 the departure date?
9 What are they thinking of? Why
10 does ODHS wheedle so much power and no one
11 steps in to interfere with their illogical
12 thinking? No one except individuals like
13 myself who flay about along with Darrell Price
14 and Maria Matzik here trying to do something
15 about it.
16 I thought perhaps I'd get some
17 assistance when I attended the meeting in
18 Columbus with, with Attorney Steven Gold who
19 won the landmark lawsuit in Philadelphia to get
20 Helen L out of the nursing home.
21 The talk was great. Steven Gold
22 was inspirational. He's been in touch with me
23 but ACL isn't doing anything, ACIL, statewide.
24 Not even a word of consolation, just good
25 luck.
BRITTON & ASSOCIATES
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1 So be it. I was sent the denial
2 in a form letter saying that the assessment was
3 denied as I said because of lack of departure
4 date and an address. Now, in December of '97,
5 there was a letter sent out, a form letter --
6 they used the same form letter for everything.
7 I think that's the only one they have.
8 I've received the same letter
9 three times, and here's the fourth time coming
10 from Senator DeWine's office.
11 At any rate this is from ODHS
12 saying that they, the waivers will likely be
13 exhausted by January of '98, meaning that there
14 goes my daughter's equipment. There goes any
15 assistance that she can get to get out of this
16 nursing home, will likely be exhausted. They
17 always leave an opening.
18 Okay. Then I got the date or a
19 near day for the opening of the apartment in
20 February. It was supposed to be ready the end
21 of this month but, or last month, but as all
22 new construction goes, it usually takes longer
23 than what you think it will, so I don't
24 have a definite date yet. It should be
25 sometime this month that she can move into this
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1 apartment.
2 Now ODHS is saying we have to
3 wait until July 1 or she does for a waiver to
4 be open for her. What is she supposed to do
5 between this month and July 1?
6 Now, she's to be re-entered on
7 the waivers in June, that's what this letter
8 says. That still is not a guarantee the way
9 things have been going that she, that there
10 will be a waiver open for her in July.
11 I'm hoping against hope that is
12 what will happen, of course. Living on
13 promises. You can't live on promises when
14 there is medical equipment involved.
15 She needs a hoyer lift. She
16 needs a shower chair. She needs a bed. At any
17 rate, this is where we stand.
18 Maria and I faxed 11 letters to
19 senators, to congressman, and the response I
20 got today from Mike DeWine, his staff ought to
21 hang their heads in shame, but why should we
22 even have to reach out to people like this if
23 there is Centers For Independent Living that
24 are supposed to be at least understanding?
25 If they don't want to assist us,
BRITTON & ASSOCIATES
DAYTON - (937) 228-3370 CINCINNATI - (513) 651-3370
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1 and as Maria and Darrell have worked their
2 tails off, but again he, why does ODHS wheedle
3 this power is what I don't understand.
4 Are they, are they just sitting
5 there totally relaxed as, oh, well no one can
6 fight us? Why can't the agencies get-together
7 and make us feel at least as though they're
8 trying to assist us?
9 Again, I ask you what is my
10 daughter to do between April and July? What
11 can ACIL do to assist us, if anything? I'm
12 reaching out in every direction for my daughter
13 again. Is ODHS the only ruling voice in the
14 State of Ohio?
15 Another thing, this is another
16 part. I haven't intended, I didn't know
17 exactly what the meeting was about here today,
18 but I get to go to everything I can that might
19 assist my daughter.
20 I'm wondering if you're on top
21 of this business of the amendment they're
22 attempting to bring about in the Fair Housing
23 Amendment Act, HR 3206. It was to repeal a
24 1968 Fair Housing Act by exclusive local zoning
25 regulations.
BRITTON & ASSOCIATES
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1 This will, HR 3206 will prevent
2 people from having a choice of living in the
3 community. It was designed exactly to no
4 longer give people in nursing homes the right
5 to come out and live in the community.
6 I had to go, Darrell and I had
7 to go to Butler County to get this. I hope to
8 goodness everybody sends letters, because this
9 bill will put us right back in the dark ages.
10 If anyone wants the addresses of
11 the people to write, I have them here.
12 I'm really truly concerned about
13 my daughter's future due to the lack of
14 interest that agencies seem to, to have toward
15 her, and the one I think that should be
16 supporting us, emotionally at least, is Ohio
17 SILC, and I see nothing.
18 As I say, you have some
19 admirable fighters in Dayton that I have the
20 utmost regard for, and that's Darrell and
21 Maria, and now Tracy. I wish I could see the
22 same kind of fervor come out of your Ohio
23 office. I really do. That's all I have to
24 say.
25 MS. LINDA GOOD: Thank you.
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1 We'd be happy to accept those addresses if you
2 want to leave them. Roland Sykes. Does anyone
3 want to speak? Roland has asked to speak
4 last. If anyone else has comments they'd like
5 to make? Roland.
6 MR. ROLAND SYKES: My name is
7 Roland Sykes. I'm a Dayton ADAPT member and
8 also chairman of the editorial committee of
9 disabled individuals and movement for equality
10 network. The only worldwide area network
11 completely disabled controlled and
12 publication.
13 We provide access to information
14 around the world over the Internet and through
15 various other sources.
16 We've heard some very heartfelt
17 comments today. I would like to come here
18 today to remind you that we as a people, people
19 with disabilities, have big problems.
20 If we look at the founding
21 documents, our Constitution, Declaration of
22 Independence, all the things that underline why
23 we're here as a people, what we find is that
24 we've lost sight of one of the most important
25 things. We are here to form a more perfect
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1 union.
2 As a people, we are here to form
3 a more perfect union. We are not moving in
4 that direction. If we look around us, we see
5 example after example where the disabled
6 community is under attack by the bureaucrats,
7 by the politicians, by the nay sayers in the
8 media, who say that folks with disabilities
9 need too much. Who says what we need is not
10 appropriate.
11 The fact of the matter is, is in
12 this country we are under siege. We are in a
13 war. A war which unless we recognize where we
14 are, we will lose.
15 And in this country that means
16 that the HMOs will give you the Kevorkian
17 solution if you have a disability, which is not
18 curable. We'll give you the cure, it will be
19 short, real painless, we promise, and it will
20 be over with. That's where this country's
21 headed.
22 That's what we can look forward
23 to unless we, as a disabled community, can come
24 together and recognize where we are. Re-group,
25 recruit, and create the revolution that we all
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1 know has to occur and do that in an organized
2 and non-violent manner. I believe that we can
3 defeat them without ever firing a shot.
4 And I believe that we of the
5 disabled community should be speaking in those
6 terms. Read the papers. In order to form a
7 more perfect union. That's not happening when
8 you're being attacked by your own people.
9 We may be trying to form a more
10 perfect union, but they ain't cooperating, and
11 the reality is, is we have to recognize that we
12 are in a war.
13 My father just recently ran out
14 of money and that resulted in him having to go
15 to a nursing home. Senator Sherrod Brown on
16 the floor of the house, not on the floor of the
17 house, I take that back.
18 In the hearing room the other
19 day when I was up for MICASA hearings said,
20 well, we don't really want to put these people
21 out in the community because there are
22 safeguards in the nursing homes and medical
23 care and other systems that we have
24 established.
25 And I looked at him when the
