Listed below is the transcript from the SPIL Public Hearing held at the Lexington Hotel in Lansing on Friday May 14th.
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MR. MASSEAU: With that, are there any individuals who would like to provide public comment on the state plan for independent living? If you can find by Tracey and then just state your name and the group you are representing if you are.
THE SPEAKER: Do I need a microphone?
MR. MASSEAU: Yeah.
THE SPEAKER: Luke Zelly, am I officially on the clock? My name is Luke Zelly. And I’m with the disability network out of Flint, Michigan. I want to thank the Council, SILC Council for the opportunity to give public input on the SPIL. This is a critical document for people with disabilities for disability advocates and for organizations that serve people, especially for CILs who want to front line everyday providing advocacy and services for people with disabilities at the local level. I also want to thank you for inviting me to participate in the SPIL writing team. Going into the process, it was a very short timeframe for us to complete the plan. And SILC Council, I met with the CILs, the chair, the executive director and the writing team and all agreed on three values going in to it.
One, we wanted to focus on statewide and systems needs instead of individual or local CIL operations or programs that would put SILC in a role of monitoring CILs which RSA has written and documented SILC cannot monitor CILs.
The second is SPIL would not dictate operational program activities to CILs, this is a local decision and may made by local board and communities based on local needs and resources.
Lastly we wanted to write the SPIL, not a 250 page document, but a simple document that would be flexible and allow CILs to be responsive to the needs and the opportunities over the next three years which are going to be very uncertain and challenging.
The writing team, help true to these values. The process was open and transparent and inclusive, so I applaud the SILC Council for I’m bracing that way of writing. In the past few weeks there has been some major rewrites and revisions that were done including an addendum that was shared last night that the full writing team had input on. We still support 95% of the plan as it’s written. The recent changes are in opposition to what the shared values are and they jeopardize services to individuals with disabilities and the very existence of CILs. The CILs formally and in writing requested changes to the writing team that the chair and the executive director of SILC had previously agreed to. As of last night, SILC has indicated that those changes would not be honored and they include four that I want to bring to your attention.
One is removal of all annual targets. The writing team worked very hard to establish an agreed upon goals, objectives, multiple indicators and three year targets and the annual targets are not required as part of the SPIL. I spoke with Sue Ranke (sp) intersection white so contrary to what you heard last night SPIL documents are not being rejected because of a lack of annual performance indicators. Sue looked over the directions for section 7 for the entire document. There is no requirement for annual targets. Contrary to what you heard last night, the Florida SILC has not submitted their 2011 and 13 plan yet. Their plan has not been rejected because they don’t have annual targets. When I spoke to them this morning their annual targets are pulled out and they are outside of the SPIL, that is not what is submitted to RSA. We heard consistently from RSA just send us what’s required, so I encourage you pull that out and the reason is the SPIL writing team did not have opportunities to discuss those annual targets. They’re not consistent with the three year targets and they can have a negative impact on the lead organizations including Michigan rehab services, Michigan commission for the blind, the CIL network, Michigan disability rights coalition, so the annual targets are not needed and they are harmful and they must be removed.
The second point is removing customer satisfaction. The CILs are required to conduct customer satisfaction and report the results to RSA and SILC, SILC does not have the authority and rehab act to set the goals and targets as they are written. More over the plan and the tools have not been written, piloted, agreed on or approved contrary to what you heard last night. Yet these targets have major consequences. A document prepared by SILC has indicated that if CILs don’t achieve those targets corrective action plans are required for continued funding, that is a major, and this is real, for the first time this is real. Our contracts in 2011 for CIL funding now require reporting customer satisfaction for the first time and it’s because of this state plan, this requirement to report.
We reported and you get this and if CILs don’t meet the indicators you can have another situation like Benton Harbor where CIL shut down because they are not in compliance so these are real issues and must be removed.
Three, remove SILC from the individual CIL process, evaluation process in section 7. The writing team agreed it was not appropriate and it puts sill income a monitoring role, that is MRS role and responsibility that was removed and put back in. It’s not SILC’s responsibility. It puts SILC in a monitoring role and it should be removed.
The last point remove references to the CFAL database, we should not conduct operational activity in the SPIL, what system they choose to use over the next three years which will be changing and changing RSA requirements is a CIL choice and a network choice. CILs are required to report 704 information and provide it to RSA and to SILC so you get that information.
In closing the current SPIL, 95% of it, great, but in it’s entirety doesn’t reflect the values of SILC, the CILs or the writing team it negatively impacts people with disabilities. As a member of the writing team, I’m committed over the next couple of weeks to making the changes and the CILs as advocates for people with disabilities and engage consumers and legislators and the governor and RSA and the SPIL partners to make the changes before it’s submitted. We have to get this ready. It’s a three year contract, so I appreciate your opportunity for input and I appreciate the opportunity to work on this over the next couple weeks. Thank you.
MR. MASSEAU: Thank you, Luke. Is there any other individuals who would like to provide public comment on the state plan?
THE SPEAKER: Luke, I have a written letter from Mike Zelly if that is okay to share, he is unable to make it due to surgery this morning.
MR. MASSEAU: Certainly.
THE SPEAKER: So Mike Zelly, disciplinary network also in Flint. SILC Council members thank you for the opportunity to speak to you today through this letter. If I could have cancelled the surgery I’m having this morning, I would have done so in order to bring this message to you person. I cannot. The doctor said so. I’ll speak to you today with a person with a disability paraplegic for 31 years and a proud citizen of Michigan a past senior president of a 2 billion bank holding company, a person who has been given the privilege to manage the disability network of CIL that served 11,000 people last year and a person who has been asked to be a voice for 86,000 people with disabilities in Genessee county. Michigan views SILC as a strategic partner in advocacy. You were created under the same Federal laws as CILs and made up of Council members and trusted by governor to be appointed to the Council and carry out the mission and duties. One of the duties is to help coordinate the writing of the SPIL of which one purpose is to guide Michigan CIL over the next three years. SPIL represents the work, the hope and the dreams of 1.9 citizens of people with disabilities. You asked the writing team of 6 people to write the SPIL document with MRS and NCB as partners which will influence the work of the CIL over the next three years and it should be supporting the work of CILs, not dictating what we do. People with disabilities in our community are RSA and founders and community leaders dictate what we do, not so. CILs participate in the SPIL writing team yet CIL are one of the hundreds of governmental agencies and organizations that support and make the hopes and dreams of people with disabilities a reality and includes Michigan and help carry out the SPIL goals by providing services and supports to Michigan citizens with disabilities, the list of organizations assisting in this is too long to read. Michigan rehab services, Michigan commission for the blind, community mental health, Michigan protection and advocacy, the school districts, department of transportation, legal services, Michigan Council rights commission, the list goes on and on. CILs are where the rubber meets the road. These are the organizations on the ground, serving and advocating for citizens with disabilities everyday and we more than any one identified in the SPIL are influenced by its content. What CILs need is for SILC to be a champion for CIL and citizens with disability and be a cheer leader for the work of the IL network, to be informed on hundreds of issues and challenges that CILs are working on everyday to include the lives of people with disability answer be a voice to the governor who appointed you to the SILC and recommend policy and funding which helps Michigan citizens with disabilities. Do you know the hundreds of local and state and Federal laws we’re trying to change right now?
You are champions and not auditors, you’re not with the client assistance program and not the funder or founder of CILs, be the champions we need you to be. CILs can make suggestions and changes to the SPIL and strongly feel must be made. It’s a flawed plan and I’m personally asking you to listen to the network of organizations who need you to be champions and partners. I believe your process is flawed and that the comments that were posted last night in having public comment the next day based on the changes I would have several people with disabilities state legislatures, community leaders at this meeting today to help me carry the message to you from Flint, make the changes the CILs are asking you. If we are unable to persuade all the Council members of the changes we feel it’s important we will bring testimony and constituents and legislators to explain the important of the changes now that SPIL has been proposed. You must remove the targets from this document. It should be encouraging CILs. It makes as much sense to tell a CIL what database to use as it does to say what telephone system they should use to provide information or what computers you should use or platform to report information in your 704 report, it makes sense to set a customer satisfaction rate for you it makes as much sense to set a customer satisfaction rate as it does to tell the amount of people served and it’s determined by the local community and the local board. One CIL may choose to focus primarily on advocacy efforts on successful housing and provide important I and R services to a hundred people. Another CIL may call every person in the service area and develop plans for 10,000 people. Do you really want to tell which CIL is doing a better job in the community based on the number of people served? One CIL may ask every caller if they like the way the phone is answered. And only get a 50% customer satisfaction rating because they are using an automated system to save money. Another CIL may ask only people who develop the CSR or client service record their satisfaction to get a 90 percent rate. Do you really want to tell CILs who is doing a better job without really understanding the issues? This isn’t a consistent method, question, tool, or funding to know what the correct rate should be for customer satisfaction. The SPIL should encourage CIL to develop a uniform satisfaction tool, not dictate an outcome or a rating that you don’t have information on. Because of who you are, you know the access to the American dream of a job in independent living is an uphill battle for people with disabilities and CIL. Be the champions we need. We already have enough auditors, contractors, oversight, public protections in place to ensure services are delivered to people with disabilities and developed in each community to provide. Make the changes that we request and be the champions and partners we need. Make an effort to visit each CIL and become more informed on the issues that are needed and each of the different communities based on so many things, urban, rural, resources training and of course funding. We need your help and not your dime or your time. Thank you.
MR. MASSEAU: Thank you.
VALARIE BARNUM YARGER: Can we get a hard copy of that for our file?
THE SPEAKER: I’m here this morning in my role as executive director of disability of Michigan and I’d like to share with you that Luke’s and white’s passionate and articulate presentation of the issues accurately reflect the network’s feelings on these as well and they have our full support. Thank you.
MR. MASSEAU: Is there any other public comment? I know Valarie has a written.
VALARIE BARNUM YARGER: I have some written.
MR. MASSEAU: You can read those in.
VALARIE BARNUM YARGER: The following five points are public comment that was pulled off of the website for inclusion in today’s public hearing. These are statements that have not yet been discussed or presented to the writing team nor have they been presented to the commission for the blind or Michigan rehab services.
Number one, we would like the plan to specify what core CIL services are performed without cost to the residents of the State of Michigan.
Number two, why not have SILC and the DSU produce an annual report regarding the valuation and progress of SPIL initiatives focused on increasing services, advocacy and leadership development or under represented communities and people with disabilities.
Number three, I am concerned this document does not state it is the operation base for Michigan’s IL program. It should say somewhere that MRS acts as a fiduciary for Michigan in carrying out the SPIL. It reads more like an appendix to the SPIL.
Number four, I am concerned there is not more teeth in monitoring the IL program.
Number five, I urge the Michigan SPIL to consider and to commence advocacy to protect persons with disabilities from these discriminatory, assaultive and unconditional policies and practices attached as the complete document received for this comment.
That was not provided today because we did not have an alternative format. I can tell you that it is referring to mental health issues and the medication of individuals that are in the criminal Justice system against their wishes and they would like us to take that on as an advocacy point on behalf of that population in the State of Michigan.
Rodney, is there anything else that has come in that I do not have listed?
THE SPEAKER: Rodney, nothing has come in the last day or so.
VALARIE BARNUM YARGER: Thank you.
MR. MASSEAU: Okay. We still have roughly 40 minutes for public comment and we cannot close public comment until 11 because it was posted for an hour. Is there any other individuals who would like to provide public comment?
Okay. We will hang out for 40 minutes and see if anybody shows up.
(Recess.) 11:00
MR. MASSEAU: We will come back together and take some more public comment i this guy wants to make a public comment.
THE SPEAKER: I don’t mind waiting five or tin minutes before I speak. I can sit there and the Council are the people sitting out here. Good, at least I know who is on the Council.
VALARIE BARNUM YARGER: If you go down to where the mic is.
THE SPEAKER: I’ll wait for someone else to go first.
VALARIE BARNUM YARGER: Basically everybody else has spoken that wanted to and because it was posted from 10 to 11 we were just observing the public hearing time so we will get everybody back in.
Sir, you need to come over here because this is where the mic is.
THE SPEAKER: It looks like I’m the last one here today.
VALARIE BARNUM YARGER: Have a seat. You will have five minutes.
MR. MASSEAU: All set? Okay. We are going to reconvene the public hearing and just a reminder that for those who want to give public comment to state their name and speakers will have five minutes to go over the issues that they want addressed and then there will be no dialog of Council members during the public comment period, so with that we do have and if we can talk a little bit slower that would be helpful. So with that we do have somebody who would like to provide comment on the SPIL. And I am going to allow him to introduce himself. Can you use the mic.
THE SPEAKER: I’m Shaun Bennet and I’m glad to be here today and meet members of Council here and most of whom I have not met yet. I have some very important issues that my hope is that the Council here would be excuse me, I have to get my paperwork.
Okay. Today is a day where we’re evaluating a three year budget and we go review the over all program, direction of this Council. I am impressed, I must say, as I go through and I see of the Council and the plan and it encourages people to lead and strength of partnership with partnerships and advocacy and improved community access and support. They are very important issues.
What I want to do today is we can take the step from just what is stated as the goals and purposes and actually achieve some goals, actually realize some objectives, and so I have some substantive policy issues I want to present to the Council and see if we can take up these issues.
I have here a nine page, it’s a legal research report dealing with the mental healthcare of Michigan, and I sent it in, I was in on February 11th and asked it to be given to all Council members. I don’t know if you got a copy. I hope that, I fixed in and sent in another copy to for this hearing and this was just don’t this week and there are some additions.
VALARIE BARNUM YARGER: Can you pull the mic away from your lips a little.
THE SPEAKER: There are some additions here on the 9th page some more policy issues that I listed, but, you know, I do want to make sure this is in the record. This is a public statement about the CIL plan and I do request a written response and so I do want to make sure that this is on the record and every Council member gets a copy of it and because what I’ve done here is not just present some policy reforms that need to be done, but I have laid out in the greatest of detail with legal authorities the justification, the reasons to try to get on board, so I hope that I have been educational and assistance to everyone that is concerned about disability discrimination and disability rights. Because I have the foundation for moving forward on this issue.
And I’m going to set that down just one minute. My feeling is every one can hear me, this looks like a small group, can everyone hear me okay.
VALARIE BARNUM YARGER: We have the issue of some people are using assisted listening devices and we really need to use the mic.
THE SPEAKER: The issues that I have on this plan, and again the 9th page I add three more mental health code provisions that need to be repealed or revised. I point out drug company immunity should be repealed and Michigan should sue for Medicaid fraud for the psychotropic drugs, that disability should be included in Michigan’s bias crime law. Michigan has a hate crimes law and has not reformed it in 20 years and disability is not included. My most central issue has to do with all as a result and drugging patients in the mental health process.
And the sad situation that has been going on for many years is that anybody who gets in the mental health process and involuntary committed is subject to forced drugging and can cause irreversible and irreparable harm. So it’s against the mind antibody and all that America really stands for in the way of Constitutional rights and freedoms. And I would hope that this organization has a role in advocacy and I know they have resolutions and taken policy statements. But I would hope this organization could see to it that if they are actually we are actually here, trying to do more than just shuffle paper, do more than just say, okay, this is our mission and we recognize that, but if we were to take the next step and to actually fulfill the purposes of this Council, that I think that the issues that I’ve raised here should be considered Foremost. Of highest priority of importance. And so that’s my first goal today, is to make sure that all members of the Council are aware of these particular policy goals and reforms in the health code.
My second important issue that I wanted to raise today has to do with civil rights enforcement for people with disabilities and it’s discrimination enforcement and I think that you know in Michigan they had a civil rights department that enforces the person with disability of the civil rights act. You probably also know the Department of Justice enforces the ADA the rehabilitation act. In fact the rehabilitation act is why this entire organization exists in connection with a rehabilitation act. So that in discrimination enforcement, it should intrinsically be a part of our concerns here. And I must say that I have had the worst of experiences in dealing with enforcement of disability discrimination both at the state and Federal level that the basically the personnel that are employed in those organizations and that I have had the miss fortune to come in contact with absolutely do not want to do their jobs right. They absolutely, the most egregious and obvious discrimination you bring to them and they simply won’t take up the cases, and, again, this has to do with the State of Michigan which has consumer rights commission and department of civil rights and OJ in Washington.
This is a second critical issue I would like the Council here to be very keen on and aware of is again it’s great to have laws in the books, discrimination laws in the books like it’s great to have a Constitution but if there is isn’t no one there and no legal muscle to enforce it, in there is no will to enforce it then it’s just words on paper, it’s just ignored, and it’s a real shame and so that is something that I want you to be aware of.
The fact I have gone through several layers and levels in terms of getting accountability in these organizations, I have gone up the chain of command and talked to people at various levels, and, you know, that and I left today, you know, challenged as to what do I do, you know, to get these organizations to actually enforce the rights of people with disabilities who seem to be the low man on the totem pole in these organizations. The excuse sometimes you get is you don’t have enough money. You will get any excuse you can to say that but I don’t think it’s a money issue. In fact, it clearly is not a money issue, it’s an issue of competence and loyalty, it’s an issue of just you know the ability of these people to do their jobs right.
So that was my second issue I wanted to raise today. And going back to my legal report that I presented here, I want to just help you guys out, again, this should be very educational to everybody here, but it’s colored with cases, Court cases, from state and Federal Government that have addressed this issue, this number one issue of an informed consent for physically intrusive treatment. For me if you have a person doing dangerous stuff to others and you can commit them and confine them if they are a danger to others and I don’t have a problem with that, I’m here to protect people and that is fine. What I have a problem with is the fact that to find someone and commit them but they should have informed consent right with physically intrusive treatments and used to be able to do lobotomy and electro shock and insulin shock and the treatments they used to be able to do without consent. It’s a shame of this country’s history, the things they used to be able to do to people. Now they try to limit it to drugging, mostly other treatments they recognize people should have consent.
But even there there was problems with Michigan mental health code in the fact you can do electro shock to somebody if you get a Court to say they are incompetent you can electric shock them so even there there is work to be done. The issue of drugging is such that the drugs are so harmful and so dangerous, right now the new and improved drugs in America are Zyprexa.
MR. MASSEAU: You have your five minutes, can you wrap up.
THE SPEAKER: The point is these drugs are so dangerous, they are so unhelpful to so many people and they are experimental as to how they will help somebody and it’s just really a shocking and offensive to say that a doctor can decide rather than an individual who the only person that can know how a drug effects an individual is that person, not a doctor, nobody, only that individual, subsequently given the harms of these drugs that the focus on is a basic right and it should not be stolen from somebody in the mental health process. And I hope that people here today realize I’ve blown the whistle on this and it would be an honorable thing to get people addressing this issue. So thank you for your attention today.
VALARIE BARNUM YARGER: And I would like to reiterate to you that because of our public hearing protocol the comments that you made today will be presented to the writing team within 7 working days and any comments that require a written response, which is what you have asked for, will be posted on the state plan website, which is www.michiganspil.org within 7 to 10 business days of this hearing.
THE SPEAKER: I appreciate that and I think my hope is this report, you know, it really gives you and explains it’s one thing to say this is my goal but it’s another to have rationale and I hope the report allows people to deal with confidence and agree with my position with confidence.
VALARIE BARNUM YARGER: And the report has also been posted on the website for consideration.
MR. MASSEAU: Thank you. Thanks. Is there any other individuals who would like to provide public comment because the public hearing is closed at this time?
Thank you, everybody, for providing comments and as Valarie mentioned they will be posted and provided to the writing team.