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>>> Good afternoon, this is Steve, director for the Michigan statewide living independent council.  We are going to wait another minute to see if anybody else joins us on the line and we will get started here in about another minute or so.  All right, it is 12:32.  I am the executive director for the Michigan statewide independent living council.  And I would like to welcome into the public input hearing coverings 2021‑2023. 
I will be your facilitator today.  And before we get started, there's some information I want to share with you about the reason that we are here today.  The SILC was established in 1992 by amendments to the rehabilitation act of 1973 and is a statutory requirement under federal laws.  The Michigan SILC is a Governor‑appointed independent and consumer‑controlled council designed to be independent and not exist within any state agency to ensure autonomy of the independent living program in Michigan known as IL.  Statewide independent living councils fulfill a unique and sometimes challenge role.  SILCs along with centers for independent living known as CILs and input from the public and partners are responsible for determining the direction of the independent living program in the State.  To receive federal funding, states must develop and submit a state plan for independent living known as the SPIL.  Which is a three‑year plan for providing independent living services in the State.  The State entity is the agency that on behalf of the State receives accounts for and disburses these federal IL funds received under the rehabilitation act.
The council is responsible for monitoring, review, and evaluating the implementation of the SPIL.  Centers for independent living with consumer‑controlled, community‑based, cross‑disability, non‑residential, private, nonprofit agencies that are designed and operated around the State by individuals with disabilities and provides an array of independent living services.  The Michigan SILC is responsible for the development and monitoring of the State plan which a three‑year plan for Michigan to work towards goals of greater access, inclusion, and independence for people with disabilities.  It also helps with coordinating activities with entities that provide similar services to independent living services.  And it assists to develop our network of centers for independent living and helps us also conduct regular meetings that are open to the public.
We achieve the goals through working with the 14 Michigan centers for independent live, state agencies in Michigan and educating the community.  Our role is not providing direct services but to advance independent live manage Michigan.  The Michigan SILC is committed to promoting consumer control, peer support, self‑help, self‑determination, equal access, and individual and systems advocacy in order to maximize leadership, empowerment, independence, productivity, and to support full inclusion and integration of individuals with disabilities into the main stream of American society.  The SILC operates with Governor‑appointed members that represent a range of disabilities and to ensure we can respond to the needs and concerns of people with disabilities in Michigan.  More than half of our members must be individuals with significant disabilities who are not state or CIL employees.  Of those member, one is selected by the centers for independent living and five are employees from state agencies that work with individuals with disabilities.
The SILC council meets at least four times a year at accessible locations, all of the meetings are open to the public.  The SILC welcomes consumers' comment, questions, and concerns as it works to improve independent living services in Michigan.
The role of the SILC.  The primary duty of the SILC is to jointly develop the State plan for independent living with the CILs in the State after public input.  The SPIL establishes a blueprint for present and future independent living programs and services in Michigan and reflects our commitment to comply with all statutory and regulatory requirements during the three years covered by the plan. 
A SPIL must reflect the needs of individuals with significant disabilities in the State and accurately describe the complexity of the challenges and barriers encountered individually and at the systems level.  Together with the input of the disability community, the CILs and our partner, we are responsible for developing a statewide plan that outlines the goals and objectives leading to improvement in the lives of people with disabilities in Michigan.
The main sections of the SPIL include Michigan's IL goals, objectives and strategy, a detailed description of how Michigan's federal subchapter B funds will be spent, an account of the outreach efforts to identify unserved and underserved populations, a detailed report of the services currently provided in Michigan, a description of Michigan's network of I think, a detailed plan for how new funds will be used including one‑time fund, a narrative of the working relationships of providers in Michigan's IL network, the SILC's resource plan, and the process for evaluating progress and effectiveness.
So how can you be involved in SILC activities?  Input from people with disabilities is vital for the development of the SPIL.  Public comment at SILC meetings and public hearings like the one you're attending today helps shape the independent service delivery system.  Obtaining input from stakeholders within the community is important for several reasons.  It allows the SILC and CILs to make more informed and better decisions.  It provides the opportunity for collaboration and connection.  It creates investment and buy‑in, and it is a good business practice.
To encourage orderly administration of this meeting and minimize the possibility of any disruption, the meeting will be conducted with the following protocols:  The sole purpose is to receive public input into GOP.  Of the 21‑23 SPIL.  Members of the public who desire to give their input will go given a single five‑minute time period for each question to make their public comment.  Members of the public or groups or organizations wishing to submit written or recorded comments may do so by providing the written or recorded comments to Tracy brown who is the SILC operations director. 
Now we will go ahead and start with ‑‑ we have a series of questions that we're going to go through.  I believe there are 14 in total.  And I will go ahead and ask the first question and then we will open up the floor for public input.  What barriers are you currently experiencing that impact your ability to live independently in your community?  Do we have anyone on the phone that would like to give public input on that question?
>> Yes.
>> Yes, go ahead, please.
>> Yes, as a blind person, this is Joe Harts by the way, member of the national federation of the blind.  I can continue along with other blind people experience systemic barriers.  They include but are not limited to access to information in accessible means including on state agencies and including tens of thousands of documents that are not available to us.  That prohibit and inhibit our capability to act in the world.  A good example is with our medical portals are not accessible to us.  The DHHS online application process is not accessible to us.  We also do not have raised character and braille signage on every permanent room including room numbers of our public buildings.  Period.  That included the State capitol in Michigan.  That includes the Michigan works building here in flint of which I've identified those barriers all the way back to 2002. 
And when I go a meeting of the Michigan council on rehabilitation services in January, there's no raised character and braille signage including on the room we meet in.  Therefore, I cannot independently find my way there.  To the room.  To the actual room.  Needed assistance.
We have major barriers with kiosks, with voting.  And we also experience and I'm across disability person, we also experience in our communities lack of ADA compliance that is major and systemic.  That includes many of the public hearings that I attended at the Michigan department of civil rights on the Flint water crisis where people who used wheelchairs could not access their water or had to drive down the middle of the bloody road.  To get it. 
Period.  Because the sidewalks are in such disarray and they're a hazard and are not complaint.  My polling place, a block away, is not ADA complaint.  And my center for independent living knows that.  And a person who uses the wheelchair cannot get independently get into this location, cannot independently get into it. 
There is a lot that is wrong with our access issues.  And Americans with disability acts is not followed.  And it's actually violated by many of our centers for independent living.
We have ongoing issues with this.  I'm going to go back to September 17th of 2015 where several dozen people were protesting the fact that the State capitol was not complaint, that there was no information in alternative formats at the booth, and then on barrier removal day, the State police and other people put literally barred us from attending.  And exercising our civil and constitutional rights in and our right to actually celebrate our day.  They put up barrier, literal barriers on barrier removal day.  Literally put up barricades.  And they kept me out who was a part of the accommodations committee.  Who had every right to be there.  Claiming that it was a private event.  I have a very hard time with this, as well you know, because I got retaliated for pointing these things out.  Also we were protesting the horrid act in violation of integration mandate to place several thousand people in facility‑based operations, I.E. sheltered workshops at sub‑minimum wage.  Now when it comes to my center for independent live, it is not ‑‑ I have been engaged with many in ADA survey.  None of the barriers that have been identified have been removed.  And that's an actual problem with our SPIL on accessible communities.  We may identify some barriers but there's no accountability for actually having them being removed.  None.  We're not pointing out the Michigan works build, the same issues that were addressed in 2002 exist to this very day.
We have ‑‑
>> We're just over five minutes.  I'll tell you what, for anyone on the phone, we're going to do the five minutes until we get through all the questions and if you have additional information you want to share, we can come back to these questions because we're going to go until 4:00.  And time permitting, we can come back to these and you can give additional comments.  But I want to make sure that everybody has a chance with all these questions.  And if we do have additional time at the end, we will absolutely use that time and turn that back over to you because it's important that we get this information.  So is there anyone else on the phone that would like to give comment on this question?  And I will repeat it one more time.  What barriers have you or are you currently experiencing that impact your ability to live independently in your community? 
>> Yes.  For me, the ableism, the bigotry, and the extreme retaliation in our centers for independent living in Michigan is creating real barriers in my community. 
>> Thank you.  Is there anyone else that would like to give public input on this question? 
>> Yes.  This is Darma Cantor and I want to second everything that Joe said.  All of those are issues that I encounter and watch my friends and family members encounter.  So I second all of that for me.
And then I want to bring up something I think that is critical when we look at changing society.  And I think in the end, and I think that's what you said, Steve, that our intentions through IL is to change the society in which people with disabilities live.  So and that is descent.  Descending voices are very critical to problem solving.  It's like when the county decides how they're going to rearrange the bus service but none of the people making those decisions have any real experience riding the bus.  You know, if it's four blocks farther, well, that's not their problem, it's my problem.  And when I stand up and tell them it's my problem, they act like, well, how dare you be so rude.  At public meetings that the public is invited to, then they get up and say, okay, well, we can't talk about that right now.  Or this isn't the place.  Well, this notion that you can have a community of changer, people who are going to champion change without encountering some descent, it means you are not going to change society.  Descent is a critical part of making improvements in our systems and in our lives.  You know, so when I go to my doctor for service and they want to send me some place else, I have to say no.  And I have to be able to listen to that doctor tell me why I can't say no.  And why I can't have my papers.  Anyway, I'm just saying that we have to learn to interact with each other in a way that embraces our differences.  We are different and that should have a value.  And those differences need to be taken in.  They need to be used as we plan our goals of change.  Thank you. 
>> Great.  Thank you very much.  Is there anybody else that would like to give input on the question, what barriers have you or are you currently experiencing that impact your ability to live independently in your community? 
Okay, we're going to move on to the second question.  What would you like to change in your community?  And I'll open the floor up to that question.  What would you like to change in your community? 
>> Yes. 
>> Go ahead, Joe. 
>> Well, we will revisit the same wheel.  One, I would like access.  Access is number one.  And not just for me.  For all people with disabilities.  If you can't get in, you can't access the services and programs.  I would like to go back to the first place that starts in echoing somewhat of what Donna says, access to our own centers for independent live, not just physical access, not just communications access, and not just transportation access, all of which are barriers, but actually being denied a seat at the table.  By non‑disabled people.  And by that, I mean, our meetings of our centers for independent living under best practices should be open to the public including people with disabilities.  They are not.  We are not even allowed in.  That goes to exclusion and that goes against every IL principle.  Because if you don't have us at the table, the consumer and people who really know what they're doing and who are the experts on our own lives as Ed Roberts says, then aren't fulfilling your mission.  We also do not need ‑‑ we also need to have accountability of these centers.  When you have people with disabilities excluded, you are not cross‑disability, you are not a consumer‑controlled, and you are not accountable.  We see a big example of that problem with the blue water center of independent living.  And there was major embezzlement that went on because people were excluded, and we weren't put into control of our own systems.  I highly suspect similar things with my own center for independent living which also violates the SPIL and employment first by working collaboratively and affirmatively with bringing Peckham to front, a sheltered workshop in violation of the workforce investment opportunity act.  And using funds to do that.  It is an outrage.  And going back to the access issues overall, what good does it do for a center for independent live, and again, I have engaged in many of these, to do the access survey, mostly physical access survey, and then to put them on the shelf or make back room deal, not to have them implemented?  Not to have them implemented.  That's counter to the advocacy mission of a center for independent living.  It's totally counter.  Again, I have addressed some of the barrier, polling place access the barriers are still there to this day because people wanted to get a few bucks from money and didn't want to implement what they found.  And then we have non‑disabled people running that center right now, and who are lying that they have a significant disability.  Lying.  (indiscernible) does not have a significant disability by any measure of the term.  Any measure.  I'm done with that.  I'm through.
>> Okay, thank you, Joe.  Is there anyone else that would like to give input on the question:  What would you like to change in your community?
>> Yes, this is the third public input session that I have listened in to.  And a lot of the input that you're getting isn't about individual barriers that people experience.  And a lot of those things are things that they should be going to their center for independent living with.  And being given an independent living plan and then the center should be helping them work through those problems.  Our centers don't provide advocacy.  That is legally required.  And simply refuse to do it because they are run by non‑disabled people and ableists.  That's something I would like to see change. 
>> Okay, thank you.  Is there anyone else that would like to give public input on the question:  What would you like to change in your community?
>> Hi, this is Darma again.  And what I need in our IL system is for the people making decisions to understand that justice for all has never included us.  People with disabilities never fit in that one‑size‑fits‑all because we are each unique.  And when you use language like accessible to all well, that means something to a person with without a disability and it means a very different thing to me as a person with a disability.  So I think it's important to start out with a vision of who is this ability.  And this is about people with significant disabilities that they deal with every day.  Day in and day out, there's no relief.  It only gets worse and sometimes it gets better, but it doesn't go away.  So that what it is to have a disability.  When you have a disability and you work with that for 30 or 40 year, then you suddenly get the picture that, no, it's not equal.  Things are not fair.  And some people choose to live with that.  But advocates worked for a longtime to create seats at the table, decision‑making tables for people with disabilities and other minorities who are always moved out to the side, out the margin.  And those seats ‑‑ and I know this because this happened, I was involved with and responsible for the kind of co‑opting of that representation and people sitting in positions are very often like the board's required to have two members on the board with disabilities.  Developmental disability, autism, that kind of thing.  But what happens is that people are sat down with other people who have much more knowledge and power and pretty soon they start to identify with those people instead of representing the group that they are from.  And that goes back to what I said the first time that when we can't challenge the people making decisions with our tax dollars, that is always going to kick us in the butt.  So we have to have representation, representatives have to be trained in order to descent to challenge those other authorities at the table.  And we have to say that's a good thing.  Democracy, it counts on that.  Representation.  Okay.
>> Great.  Thank you very much.  Is there anyone else that would like to give public input on the question, what would you like to change in your community? 
>> This is a comment about the SPIL. 
>> Yes.
>> We need the SPIL to identify the problem of discriminatory job descriptions in our centers for independent living and then create a plan to change that statewide.  We need an effort, a statewide effort to go through every single IL job description and eliminate all of the discriminatory language in them. 
>> Great, thank you.
>> If we can do that, if we can do that in the IL system, then we will be able to take that message out to the larger business community and say, this is how you do it.  Right now, we're not taking that opportunity.  Thanks.
>> Could you be specific for the record on what you're seeing in the job descriptions that you would like to see changed? 
>> I can. 
>> Go ahead, Joe.
>> Requirement to have a valid driver's license when it's not an essential function of the job.  That is something I've fought for decades.  Including when I lived in New Hampshire.  That it is not an essential job description to have a valid or essential function of the job to have a valid driver’s license in most cases.  And unless maybe you're a bus driver.  The ability to travel is what is there.  That's one of the biggest barriers facing with people disabilities and especially people who are blind.  We can't drive.  That's okay.  I can live with it.  But I can't live with a job description in which driving is not a component of that job, that an essential function of that job, but rather the ability to travel in certain circumstances.  It's discriminatory.  Eliminated.  Thank you.
>> Are there other items in the job descriptions besides the drive's license? 
>> Yes.  There are often requirements that people need to be able to lift 25 pounds.  There's also a requirement that says people need to communicate verbally which excludes deaf people.  And people who use other forms of communication devices.  One of the biggest problems is requiring unnecessary degrees.  That's why we have centers for independent living that are sealed with vocational rehabilitation counselors for jobs that have nothing to do with vocational rehabilitation.  We have nurses.  We've got people with all types of medical degrees.  It's not appropriate for these types of jobs.  We need to look into what is essential functions go along with a job.  Anything requiring ‑‑ things that are not related to the essential functions of the job are discriminatory. 
>> Great.  Thank you.  Anything else on that topic?  That you want to put on record? 
>> Yeah, I'll just say that when we think of services, there might be in different activities that a center is involved in.  But the services we're asked to deliver are peer support, peer mentor, peer counseling, empowerment, the things that are our core services are not about the education you have.  Having a disability is a great educator.  And when I sit down at a table in my independent living center with somebody who is not like me, not my race, not my gender, not my educational experience, what you can't deliver peer services is somebody that you have no connection to.  I'm pretty sure we need to look closely at our staffing policies, so we end up with true diversity so everybody who has a disability has a place to go for peer support.  Thank you. 
>> Thank you.  Anything else on that topic before we move on to the next question? 
>> Just one quick item.  One quick item.
>> Yeah, go ahead.
>> To add the affirmative action component to it and follow section 504 of the rehabilitation act and have that clearly articulated because every one of our centers are recipients of federal funds.
>> Correct.  That's absolutely correct, Joe, good job. 
>> Anything else on that?  That's good information.  Okay, we're going to move on the third question.
What independent living services are most important to you?  And the floor is open. 
>> Well, should I jump in?
>> Certainly.
>> Yes.  Well, to quote Ed Roberts again, advocacy, and advocacy, and advocacy.  And advocacy doesn't mean just raising money.  It doesn't mean that.  What it means is affirmatively addressing the barriers, the discrimination, et cetera, for people with disabilities.  We have gone far from that.  Very far from that in my experience.  And also in particular, with my center, you know, with other centers, people with various disability, even though it's promoted do not get assistive technology training or experience because it's all geared to people that do not have physical or sensory disabilities. 
A good example is we have a technology center here in Flint, but nobody knows how to teach people jaws or other screen reader technology.  And they openly admit that, but they just don't do it.  We have to have an address of these various issues that have been brought up.  And again, in my case for years.  I'm so tired of this.  Systemic, people need to be looking at these things.  And we also need to be having, well, this will get down to a safety issue, but we have ‑‑ we have major safety and abuse issues going on.  Statewide.  All people have to do is pick up the papers, you know, and I can access some accessible.  Yesterday I see, you know, special, a teacher in Southfield getting kicked out of a job for literally kicking a kid with autism.  Where are centers working on this?  Where are centers working on this when they openly abuse adults with disabilities?  Like on the September 17th incident.  There's also just some of the things I would like brought up.  And whatever like to do with my center too is also to hold all of the events in fully accessible venues to all.  We went and people with various disabilities went to Eden park here in Flint where they held the ADA celebrations year in and year out and they had inaccessible elements left and right, a newly constructed ramp that is still there that is still a hazard.  It's a hazard.  It's damn dangerous.  Hasn't been addressed.  If our centers aren't fully accessible, transportation‑wise, physically accessibility‑wise, or communication‑wise, then how can people access the services?  That's enough for right now.
>> Great.  Thank you very much, Joe.  Anyone else that would like to give public input on the question, what independent living services are most important to you? 
>> Yes, the most important thing is being able to get in the door to receive services in the first place.  Right now, our centers are not providing the core services that are required by law.  I've requested services at my center for independent living and they say they're not going to provide them because they don't feel like it.  So I don't know how people can even answer the question what are radio the most important services, we don't have services here.  Nobody knows what that means.  The people running our centers for independent living don't know what it means.  They're not providing independent living plans for people. 
>> Okay, thank you.  Anyone else on what independent living services are most important to you?
>> This is Darma again.  I think something that is not obvious is that centers function as a model for the social change we want to create.  So when somebody goes to sit on the county sheriff's community committee from our center for independent living, that should not be a person who is a professional, non‑disabled person because the opportunity to show all those other professionals at the table that a person who is blind or uses a wheelchair or any other kind of disability can participate and function at that high level.  When we have so many non‑disabled people in the administration of our CIL program, they go out to those meetings, to the community foundation and to the chamber of commerce, they go out to all the meetings because they're the people that get the invitation.  And I wish they would turn around and find the person who has the most identifiable disability in their organization and send them to sit at the table.  People who sit at those tables making decisions for us are not really able to convey the fact that they are our representatives and not us.  So culture, understanding that I belong to a community, you can call it a tribe, you can call it whatever it is, but I have an identity as is my identify it has a woman or a mother or an American.  But my disability identity is what is under attack.  That sort of necessity, urgency, let's use all the tools available to us, let's make change.  Change is needed.  And the CIL should be driving change.  So that's is the most important thing they can do is change the social context in which I have to live.  Thank you. 
>> Great.  Thank you very much.
>> Steve, can I add a few specifics here.
>> Absolutely. 
>> As a blind person, and I know other people are having this problem, you know, and other people with other disabilities need not just to acquire assistive technology but need education on it.  In their homes.  Not just, you know, in bureau services for blind services, shipping people down when we can't leave where we are.  And then they're offering very limited services anyway under their IL part B funding.  More and more limited every year.  Where do people get that type of training?  Where do people, you know, know how to use the tools that you can have?  I'm going through that right now.  I had a computer built and I need assistance to know how to use it.  I don't know have it.  And the 200,000 blind people plus in Michigan don't have that either.  Where is the systems thing?  And if we go out in the community to try to access these things, you know, for example, to get on our premiums, on the Medicaid paid for, none of the senior area agencies on age have that technology or training either.  It's a huge barrier.  We're locked out.  And we need that assistance.  And people need the assistance with orientation and mobility, especially newly blinded, which is different than travel.  We aren't getting it.  That's enough. 
>> Thank you, Joe.  I heard very similar comments during the Detroit public hearings.  So strong voices out there that are echoing exactly what you just shared.  So thank you very much for that. 
Are there anyone else that would like to give public input on what independent living services are most important to you before we move on to the next question? 
Okay, the fifth question, what independent living services do you need that are not available in your community?  I'll open the floor up. 
>> All of them.
>> Who would like to go first?
>> Go ahead.
>> That was my comment, all of them.  None of the independent living services are available in my community. 
>> Even thinking beyond the five core services of SILs, are there other services that others needed that would enhance people's lives? 
>> We need to do our jobs first.  We need to do what we're getting payed to do first.  With that core funding.  And not go out looking for more work and more ways to make money.  And line our own pockets for something else, some random whoever is going to pay us for.  We're already getting paid to provide the five core services and we're not providing them.  Michigan's program is over funded and underperforming. 
>> Okay, thank you.
>> Anyone else, what IL services do you need that are not available in your community?
>> I want to add to what she was saying because we ‑‑ it seems to me, and I would be happy if somebody disagrees and will say they disagree, but what it looks like to me is that our centers see themselves as individual businesses in a business model that says expansion is good, more revenue is good, higher salaries for administrators is good, you know, they are operating as a classic business.  But they have taxpayer dollars and there's very little actual accountability to the communities they're supposed to serve.  So what I think we need is a way of measuring customer satisfaction, both of our customers and the people who could be our customers but aren't, why aren't they our customers?  What's going on there that they don't come to the center to help them with their, you know, food stamp advocacy?  Why aren't they coming?  And if they do come and ask, how do they feel about the service that was delivered?  I think we haven't really created a system of monitoring our service delivery so, we don't have a performance improvement plan because we're not looking for it.  That's all. 
>> Thank you, and I'll repeat once again, what specific IL services do you need that are not available in your community? 
>> This is Joe again.  I think I've addressed many of those for not only me but for blind people in this county.  Those not addressed, they're not addressed, and they haven't been addressed, but speaking for other people including the newly blinded and people with multiple disabilities, we need direct, and this is big mantra, direct housing advocacy on a continued basis. One of the biggest problems that are facing people with all sorts of disabilities.  Including the newly acquired to get accessible, affordable housing.  And we need ILs and the very constituents at the tables.  Addressing these issues on an ongoing basis.  That is sometimes in my CIL, they're on every board in the business but nobody changes anything.  And they talk about well, the fact that we have a non‑disabled person representing our CIL on this board, everything is honky dory.  That goes to transportation.  Same thing, you know, Mr. (indiscernible) is on the board, succeeding his father of the mass transit authority.  And all they do in the PPRs is say the mass transit authority is 100% accessible.  Really?  You show me.  You show me, sir.
100% accessible operation of any mass transit authority and I'll give you a billion dollars.  They aren't there.  You know, that again goes to surveys.  You know, we did surveys and I helped work on them, not only on the mass transit authority which often does generally accessible fixed route buses, which I don't have ready access to where I live, but also the sidewalks and the entrances and the bus stops and that type of thing.  Those are not fully accessible, particularly to people with mobility impairments, and particularly in the winter.  Yeah, we had some where people would be launched into the streets.  Literally.  You know, they couldn't get the access and we've had cases where people the, the bus drivers would just pull away or people had to go down to the next bus stop.  And roll their chair.  I attended one of the CDA meeting, a common disability agenda, the last one held in September 2017, and there were only seven people there.  Only three that identified as persons with disabilities.  And two with mass transit authority, which by the way has another problem for blind people.  Their website sucks.  It sucks big time.  It's not fully accessible.  I'll end it there.  But ‑‑ I won't actually.
For the center for independent living to give them the red seal of approval, basically, you know, what do they call that, the good housekeeping seal of approval, to say they're 100% accessible is not true.
>> Sure, go ahead.
>> Steve, let me just throw this in real quick.  I think the claim assistance program as a tool for problem‑solving between the center and the consumer, ours is functioning.  And we need to worry about that.  If you want a brochure, great, call them up, that's what you will get.  If you want somebody to tell you about how the law works or what your options are for advocating for yourself, you're not going to get that.  And nobody is coming over to your CIL to defend the consumer.  That's just ‑‑ that is written into the legislation.  The program, but ours is not functioning.  Not functioning.  Thank you. 
>> Great.  Thank you very much for that.  Anyone else on what IL services do you need that are not available in your community before we move on to the next question?
>> Yes, I need my center for independent living to stop using public resources and donor resources to criminalize advocacy.  Centers are supposed to be advocacy organizations.  They're not supposed to use public dollars and public resources to engage in retaliation campaigns against anyone who criticizes them.  That's outrageous. 
>> All right.  Thank you.  Anyone else on that question before we move to the next one? 
Okay, the next question is, what services have you received from a center for independent living and describe your experience. 
>> Okay.  I guess I'll have to go again.  I've received nothing.  From my center.  But I've given everything.  I've engaged as a volunteer since the time I've moved back to Michigan.  In 2001, with several surveys, you know, ADA and polling place access, my labor, my contribution in trying to make the public available or make these things available.  For all people with disabilities.  I contributed money.  I've contributed pro bono an advance brailler to my center.  I've got nothing but lip service.  Or Joe, you're such a great advocate.  Oh, yeah, oh, yeah.  Yeah, you know, we want to work with you.  And we want ‑‑ you know, they pull me out and pull me out before Michigan civil rights commission and for public TV and all kinds of other places to show these things, but I get nothing including access.  I get lied to.  I'm not getting stuff, sir.  I don't get anything.  That's enough. 
>> Thank you.  Anyone else on the question what services have you received from a center for independent living and describe your experience.
>> This is Darma again.  I need other people to talk to you, so I get a broader not so personal understanding of the society I live in.  So when I go to a peer support group, I want to hear from other people with disabilities sitting at the table about how they're dealing with the voting booth or transportation system or the school system or whatever.  I want to hear how they're doing because that helps me learn how to be more independent, to be less depressed, less dissatisfied with my society.  When I hear how other people, their own champions and able to, you know, work through problems, I find peer support groups very positive.  So it's something I believe in.  And my center has the philosophy, they really, I don't think, could tell you what individual peer support is.  But they have peer support groups.  And those groups are sort of specialized as veterans support groups or women support groups.  Okay.  Maybe those people have individual problems that they need to discuss.  But IL is cross‑disability.  So once you start sorting us out, you start problem‑solving in a way that is specific to a group of people.  This is how we ended up with autism being covered by insurance.  Well, why shouldn't every child, regardless of their diagnosis, who needs those kinds of support be able to get them through their insurance?  No.  Because this whole group of people went off and advocated for autism instead of advocating for children who need support or adults who need support.  So one, peer support groups are not about information.  They're about connections.  And mentoring and supporting each other.  So I don't need a speaker.  My CIL thinks you have to have a topic and a speaker, so they bring in some non‑disabled person to address a problem.  But you know, they're not really cultivating this opportunity for us as a group of disabled people to heal and support the other members of the group.  The dynamic is totally missing.  Thank you. 
>> Thank you very much.
>> This is Joe again.  I do have to echo on ‑‑ we don't have peer support here in Flint.  You know, there was one group but for people with bipolar which is specific disability.  They are talking about having, you know, people like me sitting down and helping mentor or be mentored by my peers.  And also and it is important to be cross‑disability because we need to know the issues facing other people.  With other disabilities.  As much I like to talk it's important for me to listen.  Enough.  I'm done.
>> I tried to attend a peer support group at my center once.  This was years ago before I was told that they couldn't provide me services because I'm the wrong kind of advocate.  But anyway, we attended a peer support group.  And it was a horribly obnoxious speaker.  And then some other people in the room started trying to share some their experiences.  And one person was talking about how they were having trouble with their housing situation.  And so we started brainstorming about who that person might contact for help or what they maybe could do to try to take action on their problem.  And we were immediately told to stop talking, that advocacy was not allowed, and it was not thee Ed Roberts way.  And that should be shocking for people but that's par for the course.  We had the board president say to our faces, there is no such thing as a disability community.  We run this as a business.  That's how far off track we are. 
>> Okay, thank you.  Anyone else on what services have you received from a center for independent living and describe your experience before we move on to next question. 
Okay, the next question is:  What services would you like to see your CIL provide?  And the floor is open. 
>> This is Joe.  I'm sorry I'm laughing.  I think I've addressed some of those for me personally.  But they do cross‑disability.  I would like to see advocacy, advocacy, advocacy, and not necessarily in that order.  I would like to see the actual identified barriers removed.  For all people with disabilities.  Not ignored and not taken, oh, okay, oh, we hear you.  I would like to see as the previous question addressed true cross‑disability peer support.  I would like to see real information and referral and not just go, well, you're blind, so go over to BSBP or we don't know.  A good example is, a few months ago, I called in and I asked, well, who handles the ADA work there at the disability network?  The intake person didn't know.  Didn't know where to refer me to, but they could refer me over to MRS and those programs.  You know, which are a joke.  So those are just a few.  And including real assistive technology and other things I previously addressed. 
>> Okay, thank you.  Who else would like to give public input on the question, what services would you like to see your CIL provide? 
>> Core services.  And I would just like to add that the SILC makes an assurance in the SPIL that every person with a significant disability is eligible for core services, that is not true.  It is false. 
>> And I think what Eleanor is saying is these problems are invisible.  You know, we are not looking for them.  And therefore we don't see them.  And then we don't measure whether or not there's something we can do something about.  We don't make a plan to do something about it.  I mean, we're just letting that stuff fall off the edge of the table and act like it didn't happen.  So I really hope that centers will take that job of customer satisfaction and consumer control seriously so that we end up with the change that I was looking for in 1995.  So I'm still looking for it.  And somehow, we got to get better because if we keep doing the same thing, we can't ever have change.  Thank you. 
>> Great.  Thank you. 
>> Steve, this is a question actually.  Is anybody there live and in person?  Of today's meeting?
>> Yes, we have director here, myself and Tracy.  There's consumer party going on downstairs and they are giving their input in alternate formats.
>> Okay.  That wasn't part of the public hearing, huh?  Or this public hearing?  I'm just confused. 
>> Yes, they're submitting written input. 
>> Okay.  Whatever. 
>> Anyone else on the question, what services would you like to see your CIL provide? 
>> I'll go again.  One of the biggest things that we used to provide here at disability network was ADA, Americans with Disabilities Act, information and education.  Right now, people think the ADA is American dental association or something else.  They don't know what the heck it.  And we don't supply that.  We don't network like we used to with great lakes technical assistance center.  We don't even examine the non‑discrimination elements of the American with Disabilities Act.  And again, just echo what other people said in the past is a big systemic problem is this business model.  They defined the disability network here in Flint as their company.  It is not their company.  It isn't even supposed to be a company.  And before I blow up, I will end with that statement., great.  Anyone else on this question before we move to the next one? 
Okay the next question is:  Do you have equal access to programs and activities in your community?  Why or why not?  And please feel free to give examples. 
>> Absolutely not.  From the corner of my street to the ‑‑ it's a across the highway.  There is no accessible pedestrian signal.  I have pretty good travel skills.  That's a major, major issue.  I think you know that the place, Steve.  Again, I point out my own polling place which is only a few blocks away, only a few blocks away.  But if I walk there, I would have to walk to get to a cross light, more than three quarters of a mile and then double back.  That is not accessible.  That is ‑‑ that is actually hazardous.  I've addressed some of the issues of our kiosks, our state websites, our programs and services being denied just to the blind, let alone to other people.  We don't have access to our agencies on aging.  I don't even have full access to my own ADA events sponsored by my CIL.  No information in alternate formats.  I get sick of it.  I get sick of attending these operations.  That we're just, you know, here's a couple hot dogs and here's some disco music or DJs that are so loud, a blind person gets disoriented.  You ask me why I didn't attend last night, didn't I have, you know, a ride?  Well, you know, that's a big problem.  That's a huge problem to go to my own, you know, so‑called Christmas party of my own disability network.  And I also can't be in two places at once.  But I'll leave these more for ‑‑ I mean there, are so many operations.  People use wheelchairs and I think you know where I live.  Since you picked me up here, Steve, you know, here on Morris Road there, are no sidewalks on my side of the street.  The ADA doesn't require them.  But on the other side of the street and this is for people who use wheelchair, it is a nightmare.  People who use wheelchairs can't use those sidewalks.  They're too narrow.  The curb cuts are insane.  You know, where they exist.  And even in downtown and whatnot, my best friend, because of the access issues a few years ago, it wasn't his faults, horrible conditions of the sidewalks, in general, let alone the accessibility of them, dumped his 98‑year‑old mother out of the wheelchair.  I have to stop here.  I don't know whether to cry or scream to the walls.  But there isn't access.  There isn't equal access to anything.  For people, particularly with sensory and physical disabilities. 
Almost 30 years later on the ADA alone.  I'm done.  I'm done
>> All right.  Thank you.  Anyone else on the question:  Do you have equal access to programs and activities in your community?  Why or why not and please feel free to give examples. 
>> I would like to mention two things.  One is that in the last couple of years as people have been gathering to discuss political situation, both in terms of political parties and just people getting together to say what the hell are we going to do about that?  I mean, these things are always at night.  And that makes a problem for older people driving.  It makes a problem for me because, you know, I just get more unpleasant as the day goes on.  So by 5:00, 6:00, I'm really not fit company.  So I have mentioned that there needs to also be, if you really want the community involved, you have to have some alternative meeting places and times.  But that is not where things have gone.  However, I mean, that is a disability issue because I'm pretty sure people don't want to get up early either.  Or they can't get up, they can't get up quickly.  So when the grand rapids center has some trainings and things that they post, I might be interested in those architectural sessions, but it's at 8:00 in the morning.  So that's the other thing.  I'm really not okay late, early or late.  So you know, just knowing the people that you want in your audience means that you have to change the time in order to get them there.  Or you have to have alternative times than just one.
So I mean that's about accessing the things that other people access.  Other things, things people participate in.  Yeah, I'll just stop there. 
>> Great.  Thank you.  Anyone else for public input on the question, do you have equal access to programs and activities in your community?  Why or why not?  And please feel free to give examples. 
>> This is Joe again ‑‑
>> I ‑‑
>> Go ahead.  Go ahead, Eleanor, sorry.
>> I do not have equal access.  And one of the main reasons is that my center for independent living literally advertises that for $350, they'll give you an access review and promise not to report you.  I swear to God.  They advertise it right on their website.  You can pay them off not to report you.  They have sold us out for cash.  It's literally the opposite of their mission.  The law says they're supposed to promote a philosophy of independent live, equal access, et cetera.  They do the opposite.  For money. 
>> Thank you.  Anyone else on this question? 
>> Yes, this is Joe again.
>> Go ahead.
>> I had some interruptions, sorry.
>> Can you speak up just a little louder, Joe, for CART, please.
>> Can you hear me now?
>> Perfect, thank you. 
>> 2015, nobody got equal access as well know got access to ADA when literal barriers were put up.  But after I got arrested and I got out, a friend of mine who I will not mention right now who uses a wheelchair, you know, came to pick me up because of I had to stay overnight at $300.  At the Radisson to take me to her and her husband's apartment to sleep over night so I could get out the next day.  Again, this person uses a wheelchair.  We're out on the streets in Lansing and we're waiting to pick up the trolley.  To our apartment.  The first look didn't work.  The second trolley was called.  Or came by.  The lift didn't work.  They finally, and the people were nice, you know, there was a ‑‑ these trolleys that were there, and they're actually buses, they call them trolleys, this particular brand have a systemic problem.  But they ended up, they have to call para‑transit.  We're standing out there, you know, at 10:00 at night, on the streets of Lansing.  Not very safe.  Nobody around.  Although the one trolley driver did stay there to work with us.  And she was very frustrated too.  Previous to that, my friend told me that she had gone on that trolley before where the lift actually stopped halfway up and dragged her pants off.  Snagged her pants, dragged them off.  That is a big access issue.  Those things don't get reported very often.  When you go to make those complaint, the things don't change.  But those things break my heart.  And they happen every day.  Thank you.
>> Thank you.  Anyone else on this question before we move to the next one? 
>> I just wanted to add that older people sometimes go to community programs.  Some of them are community education and some are other things, but they go ‑‑ they all get on the bus and go to the casino or they all get on the bus and drive to Florida and back.  So this is, I mean, these programs have been in place for years.  And I guess must make money for the organization.  But none of them have buses that have wheelchair lifts or a ramp or are accessible.  I don't know how you design a program knowing that your audience is predominantly people who are retired and then think, well, yeah, but we're not going to take the people who have mobility impairment.  And if it's a community education program, that's a municipality, that's a Government.  Yeah.  That's how it is. 
>> Just to add to that, it's a very similar situation here including some of the centers themselves.  But there are no programs that our area agencies on aging, although the one in Flint Township nearest me is wheelchair accessible in itself, there are no programs, you know, to echo what she's saying or to ‑‑ a wheelchair user can't even get in.  Can't even get into the senior center.  I'm through.
>> I do say my community college bought an old YMCA facility to have a student and community health center, exercise, you know, whatever center.  And the pool is not accessible.  The hot tub is not accessible.  The locker room is a nightmare, but again here is a municipality, my community college, tax dollars, and I can't use that service.  And also, college students who have disabilities are going to have a problem there. 
>> Okay, I just want to say that these are all things, each center for independent living should be holding public gathers about.  These are things we're supposed to be brainstorming as a community, not we say it to Steve, Steve passes it over to the SPIL writing committee, the SPIL writing committee writes whatever they want, and then the CILs don't follow through on it.  The issue here is that our CILs are not functioning.  We have nowhere to go with these problems.  The SPIL isn't going to address what happened at the community college.  We need our CILs to be doing this.  Our CILs don't have open board meetings.  We have no opportunities for participation in our centers at all. 
>> I would like the give a follow‑up on that.  Rather than just addressing the problems, some of the solutions of what a center can do.
My partner by distance lives in Philadelphia.  She used to work for the liberty resources and is still active with disability rights.  For years, the city of Philadelphia has been violating the access provisions or the requirements for making sidewalks accessible once the road has been resurfaced, et cetera.  Those are ‑‑ the case law on this stuff goes back to a case called Kenny V. (indiscernible) but everybody ignores it.  So sidewalks are inaccessible, even after major road resurfacing, people are forced out when construction is going on.  They're locked in their homes and communities.  So what did that center do along with other organizations is they are now suing.  Systemically suing for the implementation of the Americans with Disabilities Act and with disability rights advocates out of California.  These are the ways that real advocacy works. 
>> Great.  Thank you for that.  The next question is, are you treated equally in your community?  Why or why not and please feel free to share your experiences. 
>> This is Joe again.  No, I'm not.  But I have ‑‑ and I must say this, I have a lot of sighted, non‑disabled friends in places that are in the community, whether it be a restaurant or whatnot.  And most people do, the common person treats me equally.  We joke around and that type of thing.  And people don't know everything.  And they can't.  But those are the good experiences.
I'm not treated equally by my own center.  For independent living.  That's a tragedy.  You know, I wanted to cite some examples, but I lost my train of thought because I do get incensed from time to time.  So I'll come back to this once I gather
>> Okay, thank you.  Anyone else, are you treated equally in your community?  Why or why not?  And what have been your experiences? 
>> Okay, I'll go again now that I gathered my thought.  But I'm not treated equally when it comes to access to public entity.  We don't get stuff in alternative formats in a timely manner.  Period.  These are by the public entities.  My local ‑‑ my township board, my local school board or my access to the library.  There's no accessible computers.  You know, none.  You know, there's no raised character and braille signage on every permanent room.  And we've held meetings there.  So no, I'm not treated equally by the public entities.  Do public entities are defined as entities the State and local Government.  No.  I'm discriminated against.  Daily.  In trying to access those things.  Those impact my life.  As Eleanor likes to say, nothing about me without me. 
>> We are not treated equally by our center for independent living.  Consumers are treated like garbage because the centers here have decided that their partners are the entities violating our rights.  And the same thing is happening on the SILC.  We are not treated equally.  We are treated like human garbage.  While you welcome sheltered workshop advocates, the people working in our very worst CILs to write the SPIL for us while we are excluded from the table.  That's a problem. 
>> Anyone else on the question, are you treated equally in your community?  Why or why not?  And please feel free to give examples.
>> Go ahead.
>> Thanks.  I think that Joe and Eleanor and I and probably many other people are good self‑advocates.  And we literally expect to be treated and given the same opportunities as other people.  That's a problem in the society because the society doesn't see us as equal.  So how does that work?  You know, people will just think that it's too much trouble or the senate commission says, well, I didn't know you were coming, so I didn't know you would have to have a wide aisle to get your chair down.  I mean, these are things that when you begin with inclusion, when you build your city programs and activities around inclusion, then you don't end up with people who are there but can't hear or can't read the materials or who can't get down a place where they can sit comfortably.  Inclusion is something that is preparation in advance.  Okay?  So the whole message that municipalities and other Governmental agencies have to be equally available, that message has been lost.  What isn't lost is the millions and millions and millions of dollars to go to nonprofit contracted to provide services to people with disabilities.  Most people with disabilities in my area live on the smallest margin of existence.  And they can only do that because they get a subsidized apartment or get food stamps, or somebody will pick them up and take them to the doctor.  They can't really do this because nobody has thought that far ahead.
It isn't the amount of money that taxpayers are paying.  Taxpayers are putting a whole lot of money on the table so people with disabilities can have a minimum standard of life.  But the people who get the money are not disabled people.  They are people in the MRS office, they're people in the department of education.  They're people everywhere who want to claim to serve people with disabilities but people with disabilities do not accept that they are serving us.  When you talk about equality, first the person themselves has to feel equal.  Then if you feel equal and you are treated unequally and you stand up for yourself, then the person, the person that you're standing up to, they have to regard you enough to say, well, I care about the fact that Joe got arrested at a ADA event.  They have to care.  Inclusion starts up front.  Equality starts up front.  You don't just get it after you get there.  And that's a message that hasn't been disseminated
>> This is Joe again.  I do want to relate to an experience or several experiences in the community.  That's significant, people with significant disabilities do face. 
I don't think that people who are not ‑‑ who do not have ‑‑ exhibit an identifiable disability, and that's not to say that there aren't hidden disabilities that are very profound experience this.  Sitting at a bar stool and having someone tell you, if I were blind, I would shoot myself.  Nobody has experienced that.  Except for a person who with a significant disability.  Now of course I'm a little bit of a smart Alec, so I go, why wait?  Or if I were you, I would shoot myself too.  That's some assertiveness.  But people, I hear those thing, that person is the R word.  You know, if I was like that, I would kill myself.  And this goes to attitudes that are unlearned when we are truly integrated into our society in general.  Which is the primary mission of our centers for independent living.
Years ago, I went, and I had some residual vision.  I went to my center and this is more than 10 years ago, oh, 15 years ago probably.  To fill out inaccessible applications for Section 8 vouchers.  There were two people, and I'm sure there are people with hidden disabilities, but there was one person who was just recently got out of a nursing home who used a wheelchair.  And one person who is blind.  And the rest of the people came in through the whole process were ambulatory, did not have a visible significant disability. 
It was used as a depot to do the work of the local HHS.  What kind of experience is that for people?  I'm done.  I'm sorry.  Yeah.
>> Great.  Thank you very much.  Anyone else on that question before we move to the next one?  Okay, the next question is:  Do you feel safe in your community?  Why or why not? 
>> I hate to dominate.  But absolutely not.
>> Joe, can you speak up for CART just a little bit, your microphone is away from your mouth.
>> I'm sorry.  My phone ‑‑ are you hearing me now?
>> Yep, CART is still going, so they can hear you.  Thank you.
>> Some of these things boil down to access and issues that are represented.  If I want to cross the highway, to get to the other side of the road, there is no accessible pedestrian signal.  I think you know how dangerous that intersection is for sighted people crossing.  You know, that is dangerous.  I've addressed some of these other issues of actual hazards and dangers and in the built environment.  That's just for one person.  Let alone, you know, other people with other disabilities.
But when we also have in the daily record, and again I've kind of pointed to this, major abuse going on to people with disabilities.  Students with autism being tasered, being taped to desks, being kicked, being beaten.  People, many people and again, this goes to my previous comments about if I was blind, I'd kill myself, many people in our communities view us as less than.  Then we aren't safe.  We aren't safe when we have Flint water crisis which was actually community‑wide.  And people are not given information about their access.  About accessible fitters, where to get them, because they don't exist, and no messages were put out.  You know, this goes to emergency preparedness.  If you aren't accessible every day, you aren't accessible on emergency day.  People being denied those access.  People being denied access to our own medical information.  It doesn't make us very safe.  You know, imagine fighting with people that you've given hundreds of dollars to, you know, in the medical community saying, well, we have to redo this report and I'm going HIPAA, HIPAA, HIPAA.  You don't read this out in the lobby.  With my medical information.  And it should be accessible to begin with.  Then when I have a doctor tell me, well, I'll send you all this stuff on email.  Just simple email.  You know, the results of your reports and whatnot.  And then he's told by the administration that, well, they can't do that.  It's a security risk.  Who are they hiding information from?  From me.  It's my information.  Because the damn portals are inaccessible.  And they get told the same stuff by BSBP and others, you know, what the heck.  This goes back, this goes back to the raised character and braille signage issue.  In our public build, I carried it around, samples of the signs when I go to buildings.  I went and attended the NCRS meeting in January of last year.  With no raised character and braille signage in the room.  And that includes the emergency access and entrance. 
That includes the stairwells.  And everything else.  Where do you go?  Where do you go?  And think about it.  Think about it, you know, if you get people, I guess I won't mention their name bus the former chair of the SILC, you know, severe mobility impairment.  And whatnot.  And you know, what if there's a fire there?  Where is the access and egress issues addressed?  When emergency preparedness has not been addressed in the freaking building.  No standards are performed.  So no, no, sir, I don't feel safe.  I don't feel safe when I cross the street.
I'm done
>> Thank you, Joe.  Anyone else on, do you feel safe in your community and why or why not? 
>> I don't feel safe in my community because my center for independent living uses its public resources and donor resources to terrorize me.  And to try to ruin me. 
>> Thank you.  Anyone else on this question before we move on to the next one? 
>> I think that safety is a pretty big question.  But let me say that what I worry about is I'm driving with my hand controls and I get out of the car, the police stop me and say get out of the car.  And then they say, walk the street line.  Well, I can't really walk the straight line.  Will they give me the time to say, I have to have my walker or my crutches or something.  I'm not inebriated ‑‑ whatever that word is.  And also, you know, are they going to start hassling me about having hand controls?  So I mean, I think, it may seem really a small thing.  But when I get to the point when I can't drive, that is a big transition not being able to goat yourself around.  So you know, so yeah, I value this driving opportunity I have.  But I know that somebody is going to come along and challenge me and that would just make a big problem in my life. 
>> To piggyback on that, can you imagine Steve and others, if you're out in broad daylight, armed only with leaflets and discontent, and you get capitol police standing in the way of accessing your own civil rights event.  And then not even addressing people who are blind.  During that event, and I've been told this because other people have seen the body cams, you know, I had a State Trooper who was about three feet away.  I didn't know.  He didn't say a damn word.  Eleanor had sergeant Jeffrey literally, and I only know this because it got described to me, put a boot on her walker.  Now, sir, I'm going to ask you, if people, if the police do this on our civil rights day and actually September 17th is United States constitution day, not the ADA vary, and violate the constitutional rights in that type of aggressive and discriminatory fashion at 11:30 on a Sunday morning, what they may do to people in isolation.  And we see it all the time.  I see it all the time.  I see it in the news.  Not only are people of color often the people who are violated and killed by police issues, but there are also people with disabilities.  A good example is the case of the person where autism in Florida.  And his caretaker was out there, laying on ‑‑ was on the ground with his hands up.  And shot in the light.  Because he's trying to deal with the person with autism.  Our police need major training.  We know another situation in Detroit with newfound friend of mine, wheelchair user and person with quadriplegic and he got lawfully arrest order taken into custody with no accommodations, was shoved into a police vehicle, which almost turned into a rough riding incident, with no lockdown, no nothing. 
Some of these things go to systemic, systemic changes that we're supposed to be addressed.  All they had to do was call para‑transit.  All they had do was call EMS, which was in their record, which was in their ADA stuff.  They didn't do.  That people with disabilities do not feel safe in general.  I don't.  And again, goes back to access issues, you can read several times a year in the papers including in this county where people in wheelchairs are killed.  And they're killed because of the lack of accommodations or the lack of access and streets they have to cross, very poor locations because the sidewalks are horrid.  And old people just don't look for pedestrians including pedestrians with disabilities. 
So we don't feel safe.  I'm done. 
>> I just want to add one more thing.  I occasionally have to spend a few days in the hospital.  And I can just tell you those are horrible environments.  And when I leave, I usually say, oh, I survived my trip to the hospital.  Not only dehumanizing and degrading the way they treat you, but literally they might, you know, not get around to giving you what need in order to live.  So no, I don't know where you are supposed to be safe. 
>> What keeps you up at night? 
>> Too much profit. 
>> Too much profit.

(Laughter) 
>> Trying to explain over and over and over again for years on end that I am a human being that deserves to be treated with respect and why it's important to treat disabled people like human beings at my center for independent living which is the one place that should know this stuff.  I say it over and over and over again and there isn't any way to convince ableists to act as disability rights advocates.  The entire system has been turned upside down.  I don't know what to do with that. 
>> This is Joe again.  That keeps me up at night too.  When I see the very places that are supposed to be our advocates retaliating against people with a voice and going to Eleanor's situation, you know, she got the same treatment whereas just asking questions about the performance of a center for independent living.  And then documenting issues and then went after her with a, what $70,000 or $75,000 retaliation.  But what happened at blue water center for independent living?  The same people who were misusing the funds were aiding and abetting in stealing public funds.  The same person who happened to be a person with disabilities but was discriminatory and aggressively discriminatory, it was let go for his harassment and his incompetence.  And I see and hear stories all the time of people who ask for accommodations at centers for independent living and are fired.  Fired.  Down in Detroit, we all know about that.  You know, it's in the public report. 
What in the ‑‑ that keeps me up at night.  When our very centers for independent living or very independent living movement have become part of the problem.  Are discriminators.  Enough.  That keeps me up at night.  It keeps me up at night when I have, you know, a two‑year felony hanging over my head and I'm trying to take care of an elderly mother and father.  You know, and I've got that put on my head because they didn't like what I had to say.  Even though everything what I had to say was documented.  And they didn't like what dozens of other people had to say.  That was documented.  That keeps me up at night.  I'm done. 
>> Great.  Thank you.  Anyone else on this question before we move on to the next one? 
>> I guess that I want to try to explain again why I have spent the last five years trying to revitalize independent living as a movement.  I will never see independent living as a business.  Although I suppose it has business characteristics.  But it's like democracy.  From its representative.  It has a hierarchy, everybody is equal in the decision making.  These are things that are beautiful whether they're on a national level or they're on a state level or on a local CIL level.
And I don't understand why people will be polite and listen to you but will not engage in that, you know, exchange of ideas.  If you just go back to your office and say, oh, God, that crazy woman, nothing changes.  I'll come back the next time and tell you over again. 
So what worries me is there will never be a turning point here.  I could be persuaded that everything is honky dory, but you have to talk to me to do that.  And please don't do what the republicans have just done by telling us the story, even though we all know it's false, but they keep telling us again and again.  I need you to listen and I need you to reply.  And until that respect is given, I don't see an end to this.  And I've said it before, I really have other things I would like to do also.  So I worry that I will never see this come to fruition.  This thing we have worked so hard on.  And you know, if you can intimidate Eleanor, think how easy it is to intimidate somebody without all the advantages that she has. 
Want to know why people aren't here on this call talking to you?  Well, it's because you have already intimidated them and silenced them.  You know ‑‑
>> SILC member, people who have been put on the SPIL writing team describe all of our input as allegations, that's dismissive.  It's dismissive of my experience and it's disrespectful.  And these are the people who have been put in charge of writing the SPIL.  That's exactly why you don't have anybody showing up to these meeting, Steve, people do not trust our independent living movement.  They get constantly disrespected, dismissed, our experiences get erased.  That's what's going on and that's what needs to be fixed and.  I don't know how we're going to do that with this team you have assemble O people who seem to believe the opposite of independent living. 
>> Thank you, the next question is, what do you find most satisfying about your life and why? 
>> Well, I've been working on some ideas for the SPIL.  And I'm looking at the federal Government's website, the website that I would use when I was working.  And they also invested a lot in peer‑operated services in the recovery program they were doing.
Recovery in mental health and substance abuse can and should be led by peers.  And so they have wonderful materials.  And I'm sure those materials are in lots of other places.  There are so many good ideas out in the world.  And so when I'm trying to figure something out, I look around, not just at the IL websites but also at the larger picture because IL influenced a lot of those programs like SAMSA and even Medicaid.  So I love those ideas.  I see that some people can take those ideas and use them.  So you know, that always makes me satisfied for a little while that here's a picture of what we could do. 
And you know, I just choose, regardless of the facts, I choose to think that this ‑‑ I can participate in some kind of change action.  That's what I'm doing.  I don't know what tough do to distinguish that.  But you know, it would be easiest if you sat down and talked to me. 
>> Great.  Thank you.  Anyone else on the question, what do you find satisfying about your life and why? 
>> Yeah, this is Joe.  I find justice and actual barrier removal satisfying.  I'll give you ‑‑ in direct action that leads to that, whether it's for me or not.  I'll give you a good example.  Again, you know, my partner by distance in Philadelphia, liberty resources, also has a (indiscernible) because it has to be.  Adapt disabilities in action.  Well, five years ago, six years ago, seven year, I don't know, time flies.  People would routinely, people used wheelchairs were routinely left off the train or not allowed to get on the train.  They're there.  They were clearly visible.  Nobody put down the bridge plates.  You know, the engineers just ignored them.  Complaints were made.  Promises were made.  Nothing got done.  So disabled in action assembled.  Disabled in action took over the bloody train.  Including me.  Including my friend, we straddled the open doors and they couldn't move.  They couldn't move.  And then things changed.  Direct action that leads to change, here's the thing.  I don't want to be sitting here bitching forever.  I want things to change.  I want things to change in my life and your life and other people's lives.   
Another example, when people who are blind fought nationally to get a descriptive video services throughout ‑‑ in every major theater and whatnot so we could enjoy a movie ourselves.  And then one that gets accomplished and Joe can go down, you know, when he gets a ride, when he gets transportation and whatnot, and sit with my sighted friends and listen to the same damn movie everybody else does.  And have that fulfilled.  And I can sit back and enjoy it.  Because I hate to be doing all this advocacy all the time.  I do.  I am a pretty fun guy.  I do like to do fun things.
Those give me satisfaction.  All right.
>> Thank you.  Thank you for that, Joe.  Anyone else on what do you find satisfying about your life and why before we move on to the next question? 
>> I am no longer able to experience joy or satisfaction because of the harm done to me by my center for independent living. 
>> Thank you for that.  The next question, is what would like to see in the next SPIL? 
>> Well, I would like to see a SPIL.  A SPIL that actually makes some effort to improve Michigan's independent living program.  I don't understand why our SPILs act like that's not the objective of the SPIL.  They seem like they want to address every single problem in the entire state except the independent living program.  We all know that's not going to happen because the CILs don't make progress on advocacy.  So they're not going to make progress because they don't do advocacy.  And if the SPIL is written about everything except what's in your control, then no progress will happen.  Obviously there say tremendous amount of room for improvement in the independent living program, but those things get left out because the plan is written by the people controlling our CILs.  It's written by the people doing the wrong thing.  You know the last bill was written as simply as a piggy bank to the CILs and there was a lot of money misappropriated and now we're going down the exact same path.  I want to see something radically different.  Something that might actually lead to any change at all. 
>> Thank you.  Any other input on what would you like to see in the next SPIL? 
>> Yes.  Joe.  As I said prior, but this say very important thing, if we take a look at the modules about accessibility communities, that is a very important thing.  But there's hardly any data collect.  And there's one glaring thing that is left out.  Have the identified barriers been removed?  Have they been removed?  That's supposed to be in the SPIL, but the instrument doesn't, you know, it's addressed generically.  But when I go, and I've made complaints as well you know, about, you know, access to information.  That type of thing.  Ryan Welch, if the website's been fixed, is the information delivered accessibly?  How do we measure that?
Is my own center fully accessible?  If they aren't and then they don't supply this information, then how do we measure that? 
Going back to the employment issue.  We've got in there competitive integrated employment.  That's a very important goal.  That's a part of the core service now.  Because integration is a mandate.  And that includes in the employment sector.  It does no good for a person with a significant disability to be put out in the community, and then to have their workday be segregated.  That's why we have case law like Lane V. Brown which is based upon the homestead principle that sheltered workshops are not integrated settings, even if they pay above minimum wage. 
They are not.  They are segregated settings.  As defined.  And again, we have the SPIL writing team, Mr. Zelling who actively, actively and openly brought Beckham.  And probably used VR dollars to do it.  And collaboration with Mitchell Tomalson and other people.  It is a violation of the competitive and integrated setting.  And he brags about it.  So that needs to be changed.
We need to have accountability in the next SPIL.  For where we spend the money and what it's used for.  Has it accomplished its task?  We have a non‑competitive bid that went out, $40,000, to Mr. Zelly's outfit in the last bill with no accountability.  That wasn't put out to bid. 
So how do we identify these operations and how do we account for these operations?  And when you have it like that and one actively brags at a meet, yeah, he's been working with him since 2014, yeah, yea.  And what the heck?  That's in the public record.  I've called him out for this for years.  I'm exasperated by this.  I have gone over, over and over again for more than three or four years, you know, taking, cutting and pasting parts of the SPIL and asking questions.  We don't need our deadlines on the current SPIL.  We haven't fully accounted, you know, for the current SPIL.  We haven't totally collected the data.  You know, it isn't always accessible.  And yet we're talking about where what are we going to do about writing the next bill?  I don't ‑‑ please help me understand this. 
>> All right.  Thanks, Joe.  Anyone else on what would you like to see in the next SPIL? 
>> Yeah, I would like to use ‑‑
>> I would like to add to Joe said, competitive, employment is written into the current SPIL.  And when you have direct evidence that a center for independent living is doing the opposite thing, that's something you should report in your measurement tool.  I mean, isn't that obvious? 
Our input and our experiences are valuable.  But we just say, oh, the data is more valuable.  The data tells us what's roadway.  Consumers' experience means nothing.  We will pretend we don't know that there's a center out there directly placing people into sheltered workshops. 
>> Steve, I would like to talk about the two documents that I emailed earlier today.
>> Today's meeting is focused on the SPIL.  Public input.  I will give you a call offline about that. 
>> Okay.  Well, let me ‑‑ the question you just asked is what do I want to see in the SPIL.
>> Yeah.
>> What I want to see in the SPIL is a plan to create more culturally diversity in our centers both employees and the people served.  Okay?  I want to see IL values identified, measured, and monitored for fidelity to IL philosophy.  That's what I sent you, were ways of interpreting those two goals. 
>> Great. 
>> This is Joe again.  I would like to see in the SPIL some type of measurement or some type of accountability as to whether the data collected is accurate or not.  I'll just give you one example.
The BSBP is a Part B recipient of funds.  A few years ago, I got my own personal records from BSBP.  Are you listening, Steve?
>> Yes, we have other people in the room, Joe, go ahead, we're listening.
>> Okay.  And I documented that they committed, they committed actual fraud.  They countered me as an IL recipient with ‑‑ during the period where they already closed my case and with people who did never talk to me.  I've never met in their entire life.  I reported this to CAP.  I reported this to public.  Nothing is done.  So where is the information?  You know, these agencies don't report the data properly.  Where do we go to ensure that it is reported?  How do we document?  People need to listen to people when they do document. 
I don't make false allegations.  I document everything.  That's an open question.  Where do we safeguard our data?  And what do we do when we don't have the data?  When it isn't reported?  What we need to do is take out everything in the next bill that was in the past bill that no action was taken. 
>> Great.  Any last input on what you would like to see in the next SPIL? 
>> Yes, I believe that the centers for independent living are supposed to develop work plans based on the SPIL.  If those plans have been developed and I don't know that they have, but if they have, they were not followed through on.  At all.  And this was a plan that was written by the centers.  So obviously you need a plan that the centers can develop a work plan based on and then follow through on to create change in our communities. 
>> Great.  Any final input on the last question on what you would like to see in the next SPIL? 
>> Steve, I want to comment on the last SPIL report.  Because I think you need some ‑‑ a different orientation.  When you count how many meetings were delivered and how many people sat in that meeting, you're not counting whether or not anything was improved, or anybody learned anything, or any behaviors were changed. 
So you have to count change and not count events.  If people count INR as how many times, they picked up the phone, that I don't think is the intention of INR.
So I think we have to look at how the information we are collecting now and learning from that where the problems are and apply that to the new SPIL. 
>> Piggy backing on what Darma just said, Steve, you talked about this at public meetings and others.  You know, outputs versus outcomes.  And in the next SPIL, outcomes need to be measured.  It's just like I said on the, you know, barriers that are identified.  Well, here's an outcome.  This is a barrier has been removed. 
>> All right.  Great.  Thank you all for the very valuable input.  That concludes our meeting today and we appreciate your participation today.  The information you shared will be forward to our SPIL writing team and this will be the last public input session.  Again, thank you all very much for participating today and have a great day.
>> Whoa, whoa, whoa, Steve, are we not having an input session in ‑‑ 
(Session ended)