[nfbmi-talk] mi silc recent meeting

[Terry D. Eagle]

NOTE:  Below is a transcript of the recent State Council for Centers for Independent Living meeting.  I took the liberty to re-position to the top, the BS4BP (ED and Lisa Show) for ease in reading that segment.  That segment addresses the recent BS4BP reorganization, points out an interim promotion for Lisa Keshal as a new division director, with another national search to take place for a permanent division director, with a likely known predictable named outcome as permanent division director.  Congratulations to Lisa.  Lisa is on track to replace Rodgers when he retires in the near future. 

 

In addition other topics of keen interest discussed by the Council include youth transition, youth leadership among youth with disabilities, the new Workforce Innovation Opportunity Act (WIOA), employment in state government by persons with disAbilities, transportation issues, as well as upcoming Council appointments by the governor, and advocacy and civil rights public comments by Joe Harcz.

  

 

Okay, why don't with take a short break so that we can regroup, if you want to get more food, I think we have more food, more soft drinks, the cookies were good, I taste tested one for you just in case.  And then we are going to reconvene here in ten minutes and then we are going to start with Ed Rodgers, do you have any time constraints?

   >>  I always have time constraints but we will hang in as long as we can but I would like to go next.

>> Sara let's take ten minutes.

[Ten-minute recess]

We are going to go ahead and reconvene.  So we are going to go ahead and get reconvened.  Okay, so we are moving into our working lunch reports so if you all want to go get another lunch feel free to.  So next on our agenda is Ed Rogers the director of Bureau of services to blind persons so, Ed.

   >>  Ed:  Thank you, Sara, I do have some people with me this afternoon I'm going to introduce because they are playing some key roles in what we have been doing.  Since BSBP was created and took effect and became active on October 1, 2012, which is the day I started and got hired too and my first task was dealing with an Attorney General's report in terms of deficiencies in the agency and since that time which was 2 1/2 years and time flies when we are having fun we have been reviewing, studying, taking input from our advisory commission, from consumer groups as to the things that needed to be improved at BSBP and as a result of that we started working on and drafted and have now created a reorganization of the Bureau.  The reorganization took effect and staff will correct me if I'm wrong either April 27th or 28th, whatever was that Sunday because remember pay periods start with Sundays for the State of Michigan and when you work for the state.  So we had to have it effective at beginning of a pay period.  What we did was we looked at functions, not necessarily bodies or officers but at functions, what are we doing and what needs to be done better and where do we need to increase our emphasis in terms of delivery of services.  The one area that stood out that we felt was not getting our full attention that it deserved per se was independent living and it's an area that is growing, an area where our statistics and numbers are growing and unfortunately for all of us in the room and I'm probably the oldest guy in the room we are all getting older and those of us that have disabilities in particular in the blind community, this is an area where the numbers are growing and they are actually growing faster than they are in our youth groups or youth categories.  And that is because of there are related problems with age and diabetes, et cetera.  So we eventually came up with a game plan that was approved by everybody who had to approve which was about half the state Government because we had to jump more hurdles than I ever imagine before, basically we have taken what used to be the consumer services division and renamed it, I never liked that particular name, so we have changed it to consumer assistance division and as such that division will be focusing on independent living older blind and our youth low vision programs.  The youth low vision program is a program that we almost lost this year.  We will be real blunt and real quick on that.  There was a movement afoot in the legislature to eliminate that program because they did not think that it qualified for matching Federal funds, that it was just general funds of about $250,000.  It's the program that helps our youth in schools.  It's a program that provides equipment and it's a program that provides services that a lot of families can't afford.  For example, there is equipment that some of our youth have that are in fourth, fifth, sixth grade high school whatever which can cost up to $6,000 so that they can see almost as well as their fellow classmates and whatever their educational setting is.  Some of the legislature felt that perhaps Medicare or Medicaid could pay for this.  I discouraged them on that with information that I presented.  Some said why doesn't insurance cover it, if the parents have insurance and have vision insurance why didn't that pay for it?

And the rep that asked me that question at the appropriation hearings I had to testify at I said well I'll use my insurance as an example.  I have vision insurance for the State of Michigan.  My wife has vision insurance with her employer and we do get to apply for benefits under both of those.  Her policy is written such that if we -- somebody needs a new pair of glasses and it's my wife and myself because all our children are grown.  In any event last year when Kathy needed new glasses after her insurance was applied, after the state insurance was applied, we still had to write a check for $700.  Now, that is a person who has a certain prescription so that she can drive, so that she can do all the things, she reads and does everything and not visually impaired other than she has to admit it she is getting a little older and needed a change in prescription.  So when you think about that and think about a device costing $6,000 even if you have insurance where is the family going to come up with $5300, that is where the appropriation is.  So after a presentation and some presentation of different information, we were able to stop for this year the elimination of that general fund, we also produced for the appropriation committee clear evidence that it is matchable funds under voc rehab if the person is eligible to be in voc rehab and eligible in the youth low vision program which is age 14 and up in Michigan age 14-26, then clearly we can use voc rehab money which pays for the equipment which will then allow us to get the match.  So the functional reorganization was completed.  As such Leamon Jones and Leamon do you want to wave or something where you are, there is Leamon and many of you know him and he has been around and has lots of experience and he will be focusing on the IL and the ob services and improving the coordination between voc rehab and the youth low vision program so that we can enhance and increase our match as much as possible.

 

We then took vocational rehabilitation services per se and put them into a new division by themselves.  We left all the people who were in place as managers together and they were all transferred to the new division by reassignment which is permitted under civil service rules.  We are going through a transition now between for want of a better world the old division and new division and Leamon Jones and Lisa Keshal and Lisa do you want to wave?

Lisa is our training center director and has been for about two years and I always make the statement I'm Irish and some days I get lucky when I'm not very good.  I promoted Lisa to that job.  Lisa is a low vision person who has a background in vocational rehabilitation.  She has about 16 or 17 as a voc rehab Counselor and time as a voc rehab manager and I somehow talked her into running both the training center and the voc rehab division or rehabilitation services division is the new official name during the interim as we go through the process of transition.  Now most of our Counselors and teachers will continue to do what they used to do, this was a functional transfer responsibilities.  The job got to the point that it was overwhelming, I thought, and clearly Leamon was using his skill and his experience and a lot of extra time to keep it running for us but I thought it was a time that we allowed to bring in a second person to help and I thought it was best to bring in somebody to head up the new rehabilitation services program and Lisa is the interim director as well as running the training center for us.  We will be doing a national search.  I've agreed with the advisory commission which is recommended to me that we post it nationally for at least two weeks so we expect a lot of good candidates, there will probably be some internal candidates also and we will hope to select and eventually appoint within a couple months a person who will be a permanent director.

 

Lisa I think you and Leamon wanted to address a couple things so I'll be quiet for a few minutes, why don't you start Lisa, you had a couple comments I think with transition youth et cetera.

   >>  Lisa:  Thank you.  I wanted to just kind of chime in with some of the things that were being discussed earlier today regarding the WIOA piece and the preemployment transition.

   >>  Ed:  If I could ask and interject Lisa, Lisa and Shannon McVoy who are the western region director for voc rehab are our two kind of permanent members of the WIOA workgroups and giving time and energy to working with all the other agencies that are covered by the changes in WIOA and we thank her for that also, go ahead.

   >>  Lisa:  I actually was able to attend the NCSABR where Susan was the national state and VR agencies and the national Council for state agencies for the blind as well as the SRC portion of the training so I spent a better part of a week.

   >>  Could we get a mic?

We are having a hard time hearing on the phone.

   >>  I can move.

   >>  Sara:  I will make sure she gets closer to the microphone.

   >>  Sorry to interrupt.

   >>  I appreciate you telling us.

   >>  I'm standing and people don't believe me but I am.  So as part of my attendance to the NCSABR and AB with Shannon and several other people lots of discussion about WIOA as Ed mentioned, the regs and proposed changes are out, we cannot comment until June 15th RSA presented three times I heard and it was interesting they presented and said do you have any questions and we said we had a lot of questions until you told us we couldn't ask them but lots of discussion and I think some people had questions about the preemployment transition services we really are about assisting transition youth and this is specifically about transition youth helping them to acquire services to become employed and we begin serving as age 14 the thought being that the national implementation will also be age 14.  In Michigan it would be 14-26 because that's when students can age out of education here in Michigan.  Other states age out at 21.  Other states age out at 24.  So those, you know, those variations will be made.  Officer, a youth is considered anyone 14-24 who is not in school and a student is considered anyone age 14-26 or whatever that for us it's 26 who is a student in school, that means secondary, post-secondary education, does not include college.  So the services that we would be providing them would be assisting in helping to make them more employable.

   >>  Lisa, you said youth is 14-26 not in school.

   >>  Lisa:  Correct.

   >>  Sara:  And a student, there are cords right there and 14-26 in school.

   >>  Correct.

   >>  So would a student -- sorry would a youth that is -- do you think a youth that is 25 or 26 thinks they are youth?

   >>  No.

   >>  Sara:  Just curious.

   >>  And the youth piece would be 24 because that is Federal.

   >>  So it's 14-24.

   >>  Lisa:  That means if you quit school at 16 and you don't return you are not considered a student any longer, you are considered youth.

   >>  Thank you.

   >>  Lisa:  It's very confusing so it's important to know that, when you separate from education you are considered a youth and so that means that a lot of you heard about the 15% that VR needs to be spending on transition.  So that means if you are not in school 15%, that doesn't count.  So college does not count towards that 15%.  So there is also.

   >>  Will Sara:  You can be the right age.

   >>  Lisa:  If you graduate at age 17, 18, if you graduate and you are done and you took certificate of completion and diploma, thank you for showing up, whatever you are done.  If you separate from school you are no longer considered a student.

   >>  Sara:  Thank you for the clarification.

   >>  Lisa:  It's a big one because if you don't know that a lot of states are working on trying to define how -- how they are spending their money, what they are spending it on and what they have been spending, we are doing that too and I know M.R.S. is as well and working with our case management systems trying to figure out what have we been spending on transition, what I'm hearing, what I heard from a lot of the states in Washington was that they're not spending near to 15% so pardon me.

   >>  About 3% right now.

   >>  Lisa:  3% and some people were a little higher.  Big concerns are like small states New Hampshire, Vermont they don't have large populations, they don't have enough people to spend the money on to justify.  The other thing a big clarity, 15% of your Federal allotment unmatched.

   >>  Sara:  That is huge, so for states that don't bring in the full Federal match have to carve out 15%.

   >>  Lisa:  Of their allotment unmatched.

   >>  You apply for a waiver to thank you through your unified state plan?

   >>  Lisa:  We don't know, that would be a question we would love to ask.

   >>  Sara:  But you can't.

   >>  Lisa:  There is an ability to make comments, I'm assuming most of you know that, if you don't you know if you look at the Federal register it's there.  The piece.

   >>  Sara:  Until June 15.

   >>  Lisa:  June 15.

   >>  Ed:  Your workgroup is going to be making comments, correct?

   >>  Lisa:  We make comments, the Bureau will be making comments, there will be an opportunity for lots of comments.

   >>  Sara:  Anybody can make comments.

   >>  Lisa:  Sure, as long as you follow the rules and do it their way you can make a comment, there is protocol for that.  They were clear about that, you can make a comment but if you don't do it our way we probably won't read it because they will get thousands of comments.

   >>  Sara:  As they should.

   >>  Lisa:  I think the VR piece is 89 pages and it's 511 pages of the proposed reg changes.

   >>  Sara:  Are all of the proposed reg changes out?

   >>  Lisa:  Yes.

   >>  Sara:  At one point there was a portion.

   >>  Lisa:  They are out but like I said and Susan said there is constant movement on that and RSA is working hard on this, the last go around in 98 it took a full four years for implementation so they are not letting us have that this time.

   >>  Lisa, is there any and I know this is just a small point but is there any recommendation going to be made in the terminology?

Because when I hear the youth going up to 24 if you ask typically anyone over 18 they don't consider themselves a youth.

   >>  Lisa:  That is their proposed change, that is what they are calling it youth and student because if you think about I'm guessing this piece but if you think about like if you are supporting a student in college you can claim them up to age 24, that is where that is coming from.  So I think that is where that national piece.  And we are the only state that educates up to 26, most other states done educate that old at all.  There are lots of conversation about that in terms of how useful that is and so on but there is a lot of -- they have a lot of rules about what you can claim as preemployment transition, what you can't, there is lots of discussion about can you claim staff time, how do you figure that out.  Somebody mentioned services to groups and technically you could be serving consumers that are not on your roles but how do you keep track of them.  There is a lot of question about that with not a lot of answers so there is a lot that we have to figure out and we have been working together on the unified plan.  I was taught talking to the blind services director from Florida and said we collaborate and don't consolidate and I like that so you know as Susan and I have said we are working together on this, we are not merging and just to be clear, I know that is a big concern all the time but we are collaborating and that is what we have to do and WDA sent workforce development agency in Michigan, we are doing that work.  Lots of questions about data management, you know, there is a piece of WIOA that says I'm supposed to know who is on your roles and you have to know who is on mine and if I come to your door and ask for services you can look to see if I'm getting services from VR and I will tell you in the Federal regs have not addressed confidentiality at all.

   >>  Ed:  If I may add as one of the lawyers in the room that is the big bear in the room because we have identified in our Bureau about 25 or 30 regs and/or state or Federal statutes which have clauses in there about how confidential the information is and I can find nothing in WIOA that did away with that.  Or that statute.  So I don't know how we will get around that or how we will comply with that part of it.

   >>  Lisa:  I wanted to add that, it was a good week and very useful and learned a lot, I wish we could have asked more questions and I was disappointed timing, I'm not alone and everybody was but what are you going to do so we will wait.

   >>  Sara:  Thanks, Lisa.  And we have got a time issue so Leamon did you want to speak to and I've got -- if you need to speak then I need to move to new business and around common vision for consumer control and come back to the round Robin report so I just need to share that.

   >>  I can be very brief.

   >>  Sara you need to come forward, Leamon.  I apologize.

   >>  Leamon:  Okay.

   >>  If you come there you should be good and I want to move this closer this way, there you go.

   >>  Leamon:  I can be very brief, looking at the new division really would be focusing on the opportunities to expand the program so that it can serve more seniors and therefore it's going to require a considerable amount of collaboration with many agencies and I've already started working with some of the CIL and area agencies and area of aging and working with many other community agencies in order they will be from with us and we will be familiar with them and we can collaborate together to provide additional services or more services to persons that are seniors within our youth low vision program we will continue to make sure that program is providing the top services for youths that can use those visual aids in order they too can achieve their goals and outcomes.  Many of the ones we will be serving are some of the ones that are 20 over 70 and still have the opportunity to receive those devices and those that are not, those that are legally blind they also will receive the services up to the age 14 and then they will move into -- be conjoint cases, concurrent cases.  And receiving VR services along with youthful vision services and there are other things we can talk about, any questions or we can talk another time.

   >>  Sara:  Questions for Leamon?

Okay.

   >>  Thank you.

   >>  Sara:  Anything further from you?

   >>  Ed:  That wraps it up at this point, if anyone in the room does have questions, you can send them to me and I'll if I can't answer them I will send them on to the appropriate staff person.  I think most of you have my e-mail and I will give it to you again, it's real simple it's Rodgers RODGERSE at mi.gov.

 

 

MISILC Council Meeting

05-8-15

11:00 A.M. EDT

 

CACIL, Lansing, Michigan

 

CART Provider:  Annette Blough, CSR, RPR, CCP, CRR

ROUGH DRAFT

(This text is being provided in a rough draft format.  Communication Access Realtime Translation [CART] is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.)

 

  05‑08‑15.  MISILC Council Meeting

[Waiting for meeting to start]

Good morning, waiting for meeting to start.

   >> Sara:  I think we are ready to start and everyone is on the phone.  Calling the meeting to order at 11:00 a.m. on May 8th, welcome everybody, it's good to see Council members and ex-officio and guests, I wanted to take some time to do our introductions at the beginning of the meeting and I will start with people at this table and go to the people on the phone then we will go to the back of the room so Robin could I start with you.

   >>  Of course.

   >>  Because you are on your phone, busted.

   >>  Oh, man, all right, Robin Bennett, I'm a SILC member, is there any other info you want?

   >>  No, I think that is great.  We will go to Ed.

   >>  My name is Ed Rodgers and I'm the director of the Bureau of Services for Blind Persons.

   >>  Welcome.

   >>  Thank you.

   >>  Nick, SILC member.

   >>  Lisa Cook-Gordon, SILC member.

   >>  Gaberiella Burman.

   >>  Kevin Green.

   >>  Rodney Craig, staff to Council.

   >>  Sara Grivetti, SILC member.

   >>  Kellie Boyd, SILC member.

   >>  Dawn Reamer, Council member.

   >>  Diana-Maddox, Council member.

   >>  Miranda Grunwell, Council member.

   >>  Wanda Travis, SILC member.

   >>  Mia smith, SILC member.

   >>  Welcome.

   >>  Sorry, go ahead.

   >>  This is Cheryl and I'm a representative from LARA.

   >>  Hi, Cheryl.  And I think I heard another voice.

   >>  Joe Harts, advocate.

   >>  Hi, Joe, good to hear from you.  Anybody else on the phone that would like to announce themselves?

Okay, Jim, can we go to the back of the room to see who our guests are?  

   >>  Jim Whalen, I'm from blue water lives.

   >>  Are you entertaining us at lunchtime?

There is a keyboard behind.

   >>  Sue and you don't want to hear me sing, Bureau of services for blind persons.

   >>  Lisa, Bureau of services for blind persons.

   >>  Leamon Jones, bureau of services for blind persons.

   >>  Pat from department of education West Michigan outreach representing Collette Bauman.

   >>  Collette is in Kentucky or Tennessee.

   >>  Kentucky.

   >>  Kentucky, I knew it was one of those states, she is at a conference down there well good.

   >>  Shori Teeple, staff to Michigan Council for rehabilitation services.

   >>  Consumer and advocate.

   >>  Welcome.

   >>  Eleanor, consumer and advocate.

   >>  And we have a baby standing outside the door.  Gabriella, do you want to introduce your baby?

   >> I have a modesty cover so I can feed her.

   >>  Sara:  This is Gabriella's new baby, your baby is six weeks old.

   >>  Exactly ten weeks old.

   >>  Sara:  Time has gone by fast, welcome, so we declared we have a quorum.

   >>  Roll call.

   >>  TRACY: Robin Bennett?

   >>  Here.  

   >>  TRACY: Kellie Boyd?  

   >>  KELLIE: Here.  

   >>  TRACY: Gabriella Burman?

   >>  GABRIELLA: Here.  

   >>  TRACY: Lisa cook-Gordon?

   >>  LISA: Here.

   >>  Tracy: Dominic Dennis?

   >>  Dominic: HERE.

   >>  TRACY: Sara Grivetti?

   >>  SARA: Here.

   >>  Tracy: Miranda Grunwell?

   >>  Miranda: Here.  

   >>  Tracy: Michael Hamm?

Excused.  Steven Locke?  Excused.  Diana Maddox?

   >>  Here.

   >>  Tracy: And Rebecca Parten?  Excused.  And Dawn Reamer?  

   >>  Dawn: Here.  

   >>  Tracy: Mia Smith?  

   >>  Mia: Here.  

   >>  Tracy: Wanda Travis?

   >>  Wanda: Here.  

   >>  Tracy: And we do have a quorum.

   >>  Sara:  I'm looking for approval of the May 8, 2015 business agenda and I want to entertain a motion for that.

   >>  I'll make the motion.

   >>  Gabriella moves and do we have support?  

   >>  Support.

   >>  And any discussion changes additions?

The only thing I'm noting is under state plan item 2 C I want to move to old business, we will update you when we talk about the SILC structure that is by recommendation and then to confirm we will have representative from the developmental disabilities Council has confirmed to present to us today as part of our ongoing efforts to connect with other Councils.  And I'm going to move Susan Howell's recommending moving Susanne's presentation early in the meeting because of her time constraints and add under new business the recruitment of new SILC Council members to the agenda, discussing that.  So any further -- any discussion about those recommendations?

Or any other recommendations for agenda adjustments?

Okay, actually what I'm going to do is sue are you okay if I do your update after the first public comment before operations before?

   >>  I'm good to quarter to 12:00 so whenever.

   >>  Sara:  Okay.

   >>  So whatever works for you.

   >>  Sara:  That should work just fine.

   >>  Thank you.

   >>  Sara:  So do I have a support to accept the recommendations to the agenda?

And motion to approve it with those recommendations?

   >>  Dawn:  Support.

   >>  Sara:  I have support when you do the Roberts rules every quarter it takes a few minutes to get your groove going so a motion on the table with support, agenda additions have been made or changed so all those in favor indicate by stating aye.

   >>  Aye.

   >>  Any opposed?

Okay, that motion carries.  Thank you.  Now I'm looking for a motion to approve the February 13th quarterly business meeting minutes the draft of those have been provided to you in your packet so I'm willing to entrain a motion.

   >>  Approve the minutes.

   >>  Miranda makes the motion.

   >>  Dawn Reamer supports, any discussion, changes or edits to the meeting minutes?

>From February 13th?

Okay hearing none all those in favor indicate by stating aye.

   >>  Aye.

   >>  Any opposed?

Okay, that motion carries.  So now we are moving into our first section of the first opportunity for public comment.  I'm going to read our public comment policy.  Members of the public who wish to speak will be called on by the chairperson, you will be allowed five minutes as an individual or five minutes if you're representing an organization.  The public must address the Council and not utilize this time engaging in dialog with members of the Council.  During breaks we will have the opportunity to meet and engage in such dialog.  Members of the public are requested to refrain from repetitious comments during this portion of the agenda.  Do I have anybody interested in doing providing public comment?

   >>  Yes.

   >>  Is that you, Joe?

   >>  Yes.

   >>  Sara:  Okay, I will let you go ahead and start any time you are ready.

   >>  Joe:  First order of business is what is it that people don't understand about the concept of nothing about or without us.  And so much of the services are supposed to be at the table at every aspect and every CIO with the DSU and everybody else.  Last night the SILC held another meeting which violated the open meetings act, all meetings must be available to the public, all.  I have been discriminated against by several CILs, open and documented, I've been discriminated against by the DSUs, open documented, fastidiously.  And it doesn't apply to us, the FOIA doesn't apply to us, IRS code doesn't apply to us.  ADA doesn't apply to us section 504 doesn't apply to us, we are private, non-profits.  Well here is a challenge to the folks that make those statements go out and get a job in the private sector and give up the public funding which is ear marked for the inclusion, the empowerment of people with disabilities.  When I have people who run CILS tell me and tell other people with disabilities, oh, you can't come to our whole board meeting, how is that self-determination and inclusion?

Oh, you can't have access to our meeting minutes.  We don't have to give them to you.  We don't have any accountability, ladies and gentlemen on the operations of our centers for independent living and even this SILC.  Nor do we have any accountability of the DSUs.  People are in bed with the CROs.  If people want jobs with the CROs I suggest you go out and go get a job at the garment center and make $2.20 an hour.  What is it that people don't understand about the fact that self-determination and empowerment of people with disabilities starts with us being a seat at the table with things that engage our own affairs and why is it when number one thing is supposed to be advocacy of our centers for independent living but they go but we can't go out and make this city Government accessible, they hold our funding.  Oh, well, we can't point out the fact that DHS is not accessible to any blind person.  Tough to buy.  And provision of information and alternative form is upon request and in their service delivery.  Same goes for BSBP, you have heard the DSU come out and deny me access to information.  You have seen the reports, ladies and gentlemen, even in a 70 B reports with no accountability of where the public funding is going, where we -- they had extra money and one carry over every year and serve 60% less.  Just makes me very angry and Joe is angry because I'm seeing the very centers for independent living and very places for empowerment of people with disabilities turn us into a commodity.  A cattle car.  I see people sit behind closed doors making decisions about us which doesn't go above and doesn't have anything to do with self-determination now does it?

It doesn't have anything to do with empowerment, does it?

We hold year in and year out ADA celebrations with and in venues which are violative of the ADA and I'll talk more about that in my next segment.

   >>  Sara:  Thank you, Joe, Joe your time is up.

   >>  My time is up.

   >>  Sara:  It just ended so it's a good time.  So do I have anybody else to deliver public comment?

Okay, we will be offering another opportunity at the end of today's agenda for additional public comment.  At this point I want to invite Susan Howell to deliver the state update.

   >>  Sue:  I wanted to start first talking about the new work horse innovation act that we are immersed up to our ear lobes in terms of working on that closely with Michigan works and with the Bureau of services to blind persons.  I am very happy to report that this internal team has been working very actively to write this unified state plan and I want to express my appreciation to Ed Rodgers and his team for the help that they have provided and also to our workforce partners to Michigan works.  I want to really stress that what we are truly proud of is how we are getting there and the fact that we are really working in the spirit of the law to write truly a unified state plan.  About two weeks ago I had the opportunity to attend the Council state of the art administrators in Washington D.C., I was there with 34 other state directors and we were also invited to go to the White House to participate in breakout sessions and then provide the information from those breakout sessions on the new wheel of law to undersecretary Chris Lou from the department of labor.  As we reported around the table, what most of the states are doing is they are writing their separate plans as they have in the past and then they are stacking those plans with the workforce agencies where Michigan is truly working to provide a unified state plan by looking at how we can incorporate services and different things that we are doing together.  We are already talking with our workforce partners about looking at training and program opportunities that we can do together now as M.R.S. and I believe BSBP started this law last July, so I'm really happy to report I think we are making very, very good progress.  And that we are also really creating a much closer relationship in terms of how we are getting there as well.

 

In alignment with the WIOA law and Governor Snyder's directive on creating competency within the State of Michigan departments to advance the placement of individuals with disabilities, we have been working closely with lieutenant Governor Calley's hidden talent tour and I wanted to ask folks how many have heard about that tour.

   >>  Sara:  We discussed it last night at the committee of the whole meeting.

   >>  SUE:  Thank you I appreciate that.  We already have had presentations in Livonia, Saginaw, Travis city, Kalamazoo, Marquette and Flint and Calley met with us two weeks ago and the next is internal of the State of Michigan and done one with internal state departments and doing another one to really advance the message about the importance of State of Michigan walking the walk and hiring these folks so we are looking in collaboration with BSBP to work closely with state departments on really bringing more knowledge and more training to those departments on how to advance the placement of individuals with disabilities.  Also, we are working closely with our committee rehab organizations and our centers for independent living to really look at how we can establish one point of contact also BSBP is involved with that and trying to bring in Michigan works as well.  Other partners such as community mental health and department of education will also be joining us at some point.  The one point of contact is what we heard loud and clear from business.  That they want to deal with one entity rather than having five or six people come at them and so we are working out to really see how we can create that system.  It's not without our challenges but we are committed to trying to stay at the table and forge that because we know that would be good for all of us.  Another area that we are making progress in as our strategic planning and working together to really look at our programs and our budget and how we can effectively facilitate programming across the state such as our swift and sure program which is now being rolled out to 18 counties for folks that have felony backgrounds and also project search and adjudicated youth, these are programs that we are rolling out and we are working closely with partners so that we can make sure that everyone has a voice at the table and that we are talking transparently about that.

 

Relative to the M.R.S. budget we are still awaiting the final budget as legislature and Governor's Office continue in negotiations.  With the new regulations contained in the WIOA there will be more funds dedicated to transitional youth, preemployment activities and so we are looking and continuing to look very stridently at ways we can innovatively draw down more match, that is my report.

   >>  Sara:  Robin.

   >>  Robin:  I have a quick question, what does preemployment activities, what does that include?

   >>  Sue:  Well quite honestly that can include a lot of things and can include a first glance for a youth to go out and visit an employer so that they begin to see what the world of work looks like but it needs to be individualized to that student, to that person.  While we may have some programs that will impact groups of students we are also going to try to look at it from an individual's needs as well.  It also could include having them do a day on the job, working at an employment site and may have them going out and interviewing employer's and talking to employers and trying to look at what other states are doing to get other information but when I was in Washington what I heard was a lot of the kind of same activities we are trying to really look at what we can do more innovatively to focus on the individual and that group of students.

   >>  Robin:  When they interview employers or do a day on the job somewhere are these places that have already been identified as places that may actually hire individuals down the road?

Sue:  Yeah, that would be our hope.  But I also want to say that if we are going to break the barriers of getting folks with disabilities into what we call untraditional, there should be no untraditional jobs.  There really shouldn't.  We should be able to look at every employer as a possible place for employment.  So part of what we are looking at too is incorporating more of those and I'll use that term untraditional employers by helping them become knowledgeable and by having them connect with students that are coming out of schools and what we are finding now as we are working closely with these businesses is that some of the larger businesses like DTE, Dow, Myers, they are interested in working closely with the youth and looking at how they can forge different opportunities within their organizations, maybe with some accommodations or supports.  So my goal is that we won't hear untraditional, we will hear that every business is able to access and provide employment.

   >>  Sara:  I want to have a follow-up and go to Gabriella.

   >>  Ed:  At different times sue and I and different staffs have had contacts with RSA and RSA is reluctant to give us what I would call iron clad or real solid definitions of what preemployment is.  The latest excuse from RSA is that we don't want to do anything during the comment period for the regs being proposed so everything sue says is probably going to be included in that but it's not definite yet until RSA finally will tell us something.  I mean, this is one of the roadblocks we have run into, thank you Sara.

   >>  And you had a question for sue.

   >>  When you were in Washington did you meet this young woman Maria town hired as the liaison to the disability community by the Obama administration?

   >>  No, I did not get to meet her.

   >>  Have you heard of her?

   >>  I have not but I would be interested.

   >>  Yes, I was wondering because I'm curious to know what she is going to be tasked with.

   >>  I did not meet her.  I met three members of Secretary Lou's staff but I did not have the pleasure of meeting her but I would be most interested in hearing more about her.

   >>  Okay, I'll send this maybe to Rodney and you can send it to everyone.

   >>  That would be fine.

   >>  Sara:  My question and this will go to both sue and Ed and you may not have the answers again due to lack of the regulations being fully proposed, some of the activities that are being suggested or the whole changes around youth transitional and the need to provide more specific employment counseling before placed in a community rehabilitation organization, integrated competitive employment is really supposed to be the first place to go.  Where -- what are the responsibilities of the education system?

Transition starts early.  It starts with the families, the students, the educators and tell me about has anything been worked out on that, how that coordination needs to happen?

I don't want to circumvent the school's responsibility and think of this entirely on vocational rehabilitation and obviously the partners you bring into this.  And I know Pat love is on the phone from department of education and offer an opportunity to where is the coordination going on there?

   >>  Ed:  If I can talk first, quick, quick tongue, we work of course with all the ISDs intermediate school districts and work with individual school districts and start them fairly early but we also have a youth program for youth low vision where we supply equipment such as the lenses that young children need going through the school system.  It's a small appropriation but it's sufficient to cover the number of students that have been identified as youth low vision and clients of BSBP or future clients of BSBP.  And that will continue with the department of education and BSBP and I would assume that Sue’s folks are doing the same thing.  Again, we are not quite sure how WIOA is going to impact on this.  Everything is kind of a big question mark and traditionally this is what we have done and we will improve on that.

   >>  Rewrites by RSA the final draft came out yesterday and we are reviewing that for language and definitions.  However, what I heard loud and clear in Washington is that we need to be demonstrating the effort, since this law went into effect last July, we can't wait to begin forging the discussions, the communication and even to some extent where we feel that we can create some common ground to try to move forward with that.  With the intent of providing information back but also to make sure that RSA and our partners begin to really see as we need to see that what the challenges are going to be as we move forward with this law.  So the communication with our educated partners and making sure that everyone is looking at this from one agenda which is providing a more of an array of services and breaking down those barriers, we want to honor the mission of every agency BSBP and RSA and schools and we have to find a way to come together and I will respectfully use this term merge or services so that we can begin to provide a more comprehensive chunk of services to our youth students.  And again respectfully using that term in the right context.

   >>  Sara:  And Pat we are talking education so I wanted to give you an opportunity if you wanted to speak about youth transition and I didn't know if that was an area you touched.

   >>  Yes, we do work closely.

   >>  I'm thinking you are on the phone, I apologize, it's Cheryl that is on the phone, sorry, Pat, I apologize.

   >>  Clear connection.

   >>  We do work very closely with the ISDs and LEAs and the transition coordinators to help ensure that the students out there are receiving transition services.  It isn't what we would like for it to be but we are working and trying to collaborate with them.  We have collaborated with BSBP in the past to also to ensure that those kids in the educational system are receiving transitional services.

   >>  Sara:  And I think the key element in this is that the -- every ISD, every LEA local educational agency is so different, you know, so that will be -- I know it won't be a one size fits all coordinated approach but I think that I'm encouraged to hear you guys are on top of some of this stuff.

   >>  Sara, I think the thread through the law and with many of the collaborative efforts we are trying to set we have to balance and honor the local control and local logistics but we also have to find a way where it makes sense for there to be really strongly identified openly transparently the common ground because we can't let the past dictate the future, it becomes part of us but we need to move it forward in a way that makes sense and honors the mission that we are all here to do.

   >>  Lisa.

   >>  Lisa:  I have a question, I attended the employment first state leadership meeting the other day and we talked a lot about what was going on and about where was consumer engagement so I would have to bring that up here considering that I represent advocacy organizations on this Council.  What is the plan to partner with the family and consumer organizations?

   >>  Sue:  Well, from M.R.S.'s part the centers for independent living and Michigan rehab Council are two of the go-to partners for us.  We are trying to work diligently to get town hall meetings set up so that we can get feedback on the new law and have input so we are trying to get the schedule moved forward because we know that we have to have that to be able to provide feedback.  So those are two of the go-to agencies we will be going to to get that information.

   >>  Lisa:  One thing that was real evident to me is we talk about transition of youth but when we hold our meetings we look around tables and there is no youth there and we heard a comment earlier about, you know, it used to be for families nothing about it was us and when we talk about youth and transition it's the same thing nothing about them without them so I would look at hopefully there being some activities to involve youth leaders.  The next thing is that there is an effort going on right now around youth leadership and when it comes to M.R.S. there has been questions raised about the funding of youth to be able to participate in the forum, as if it's identified on the plan, can that fund their participation?

And so you know I'm asking is that a possibility?

   >>  Sue:  I would look at it and be open to it and I will ask so we don't lose sight of these suggestions is send them to me in an e-mail and then I will make sure to move that forward and I thank you for this suggestion.

   >>  Lisa:  Thank you.

   >>  Sara:  Any other Council members have questions for sue?

Okay, sue, thank you very much for carving out time out of your day for us.

   >>  My pleasure.

   >>  Pat, thanks for being in the room.  [Laughter]

I'm SPEAKING in the phone and you come out the other ear so the next item on the agenda is the operations report and Mike Hamm is our treasure and he presents the fiscal reports to us.  Mike had to leave early to get up to the upper peninsula so he asked Rodney to provide that report for him, so these are located in the red section, yeah, the red section of your packets.

>>  Rodney:  Looking over the finances of the Council the finances are in a good fiscal position both for where we are at in our budget and cash flow that is on hand.  We are under spent on several budget lines.  The largest area that we are under spent on right now has been in the salary and fringe line because the staff has been budgeted for three staff persons and it's been filled by two.  Unto last week when we brought on our new director of systems advocacy who we will introduce Chris Simmons here in a small while, so we are looking at that area as going to begin to be coming into alignment.  We are further looking at our financial spending requirements and just getting a better, proper picture of the funds necessary to complete SILC's mission and how those funds are allocated and we will be doing that through the rest of the fiscal year.  But overall we are in a very good position, solid position going forward.

   >>  Sara:  Thank you, Rodney.  Does anybody have any questions of Rodney on the financial reports?

So I'm looking for a recommendation to accept the second quarter SILC fiscal reports to be placed on file.

   >>  Nick:  I'll make the motion.

   >>  Support.

   >>  Kellie support.

   >>  Any further discussion on those?

Okay, all those in favor indicate by stating aye.

   >>  Aye.

   >>  Any opposed?

Motion carries.  The next item on the agenda is the consent agenda.  Looking for a motion to accept and place on file the SILC consent agenda.

   >>  Dawn:  So moved.

   >>  Support?

   >>  Gabriella:  Support.

   >>  Indicate by stating aye.

   >>  Aye.

   >>  Okay, any opposed?

Okay, thank you, that motion carries as well.  The next thing on the agenda is the state plan and I think Kellie and I are going to share some responsibility there so the first thing is going to be the report out from the committee of the whole meeting last night.

   >>  Kellie:  The committee of the whole met last night to review and monitor the SPIL as we do twice a year.  We reviewed the objectives and the progress that we are making on the objectives in the SPIL.  We are currently in year two of the SPIL and I'm happy to say that there are nine objectives that we are monitoring and that we are on target with all of those.  So a great job is being done by all of our partners, everybody involved, so it was really great to hear that.

 

We also talked a little bit about ways that SILC can be more engaged with events that are happening in the community, independent living types of events and things that are happening and kind of boots on the ground and we talked about a couple different ideas and one is youth leadership forum and Jim way lent will discuss that in greater detail this afternoon so I will deter for him to discuss that with you and the first ADA celebration that is happening in September.  SILC is a sponsor of the event and is playing a really critical role so we are really grateful we can be a part of that.  We also talked about potentially having an independent living sum met which it's in the works, it's been discussed, it seems to have a lot of momentum at this point and it would allow CILS to have the ability to network with their peers and learn more about best practices and gather more knowledge which will help them to enhance service delivery across the state.  And when we are talking about the I.L. summit we are talking about partners being engaged as well because one group cannot do it alone and we are hoping to have backing for the SILC Council members and partners.  We talked about disaster planning or emergency preparedness for people with disabilities.  As we discussed so many things have been happening in and around the community and people really are not able to get all of their needs met so we are hoping that we can devil more into these topics, explore them a little bit more and likely add some of these things to the next SPIL that will be starting to be written in the next few months I believe.

   >>  Sara:  Three weeks.

   >>  Kellie:  Three weeks, so again we just talked a lot about some of the things that SILC can do to get more engaged and more boots on the ground last night, anything you would like to add, Sara?

   >>  Sara:  Committee of the whole and do you want me to talk about SPIL development?

   >>  Kellie:  Either one, SPIL development.

   >>  Sara:  I want to say about the SPIL monitoring process is the two areas we had not really been able to implement due to lack of resources was a lead, having a lead person to help get the common disability agenda done and I think it was developed in 2007, the rewrite was 2007 or 8 and original was 2006 so as you can imagine a document that talks about changes in that are needed in policy to become Michigan's policies are truly reflective of inclusion and full participation of people with disabilities et cetera the -- policies have changed, things have improved and our disability agenda is way out of date.  So that was written into the state plan as a measurable indicator as well as SILC taking the lead on facilitating think tanks around issues or policies that we know that we are appointed by the Governor to do a very specific task but don't want to work in isolation and we want the think tanks to really be inclusive, opened up to the public, bring as many people in as possible to be able to really vet out issues and talk about them at a much deeper level and we didn't have the resources to get those two things done and we were able to as you know we approved at the last business meeting that we had in February the addition of a director systems advocacy.  And we went through that hiring process and the interview process and selected Chris Simmons as our director of systems advocacy and I am almost feeling at this point, we mentioned him twice and it's the right time to stand up and introduce and tell about himself, with WIOA SILCs are allowed to do systems advocacy so I think this really is a critical position for the independent living network which I say is inclusive of centers for independent living, SILCs, people with disabilities, et cetera, and the list goes on.  But really helping us move our policy agenda, develop our policy agenda and move it forward so Chris if you want to introduce yourself.

   >>  I'm Chris Simmons, this is week one, I'm very happy for that.  The Council members should have received just a very brief bio on kind of where I've been and what I've done.  I would invite anyone to find me on Linked-In should they choose.  I come to this from the transportation industry.  Specifically the part dealing with behavior change for people who are commuting to work so that they have not necessarily driving alone but they are taking advantage of all of the transportation options that they may have.  So with that I come from a public policy background, I come from a lobbying background, I come from a program design back.  I have implemented various behavior change programs in Washington state so I think for those who are able to attend the committee of the whole meeting last night you got a very minor sense of where I'm looking to head and I'm very much looking forward to listening and learning from all of you as we attempt to take on some fairly major policy lifts and really bring the SILC back to something that I think could be a major voice for this community and how it integrates into the state and thank you I'm looking forward to working with all of you.

   >>  Sara:  Thank you, Chris and welcome aboard.  So that was all I had to say about the committee of the whole and the SPIL monitoring report and I'm excited about progress we made in the current state plan and now I'm going to shift gears and Kellie is okay with that too, to the next state plan.  So as you know between the CIL and SILC we put together a SPIL process team and I probably don't have the exact title of that correct but the SPIL process team included Diana, Wanda, myself, Rodney was on it, Robin was on it, I apologize it has been a while, Jim Moore.

   >>  I believe we called it SPIL framework.

   >>  Sara:  The charge of that group was to put together the SPIL writing process with the timeline and how we wanted to engage in SPIL writing so our recommendations are included in the salmon or coral section of the packet.  You see the timeline is laid out here so the submission date for the state plan is June 30th of 2016 so we are about 13 months away from having to develop the state plan.  I'm sorry from submitting a state plan.  So the development has to occur now and actually development has been occurring because we have been getting public feedback, we have been you know talking to different groups and hearing from different Councils, the SILC and rehab Council is going to be engaging in some town hall forums in the next few months.  I know that developmental disabilities Council is doing some community conversations so we've had some interaction with the DD Council.  Really it's about gathering a bunch of information and making sure we create opportunities for public input and public input into the state plan.

 

So the timeline has been provided with all of our benchmarks and the recommendation was because the state plan needs to be signed by 51% of the CIL directors and the SILC chair signs the state plan on behalf of this Council, and the designated state entity, entities sign it on behalf, to sign the resource plan on it.  So what we are looking for is three members from to represent the CILS, three members that represent this Council.  And you will see in this section the document that says transformational leaders for SPIL writing team and looking for individuals from SILC that have cross disability knowledge and experience and looking at writing a strategy and inclusive in their approach and ensure all voices are heard and need to embrace that.  They have to have the ability to commit the necessary time to developing the state plan, they have to value a data driven approach to developing strategy and they must believe in the tenants of consumer control and creatively seek ways to obtain input from people with disabilities.  So the CIL network named three individuals, three directors be a part of the team and Jim Moore disability northern Michigan and Dave from Kent County and Tamara Collier disability network West Michigan and made the selection among themselves and now on behalf of SILC I am asking you to select three members from this Council to be a part of that so I'm opening it up for discussion, nomination, volunteering, you can nominate your colleagues or self-nominate yourself, there is no -- if there needs to be a vote we can decide that process but we are looking for three and if there is more than three you guys can Duke it out.

   >>  Lisa:  I would be more than willing to take part in that considering I do represent a lot of the advocacy organizations and have some collaborative relationships with a lot of the Councils.

   >>  Sara:  Thank you.

   >>  Diana:  I volunteer.

   >>  Sara:  Thank you Diana.  Okay.

   >>  Go over the requirements once more, just in a broad sense.

   >>  Cross disability knowledge, vision and transformational SPIL and inclusive in your approach, ensuring all voices are heard, must believe in the tenants of consumer control and creatively look for public input.

   >>  What I mean is more like the technical aspects, are there -- is this a cut and paste job in a lot of senses?

Is there a lot of new, you know, content that has to be added?

Is there a lot of research and substantiation that has to go into it?

   >>  Sara:  Thank you for clarifying your question.  The critical part of the state plan from my perspective is the goals and objectives have to be measurable and have to at the end of three years we see an improvement in independent living services throughout the state.  And so there are portions of the state plan, that is boilerplate, there is portions of the state plan that are written very simply and easily but the key elements to why we need this cross organization team is because the goals and objectives are the most critical aspects of this plan.  So it's about how do we strategically develop the goals, measurable indicators, and implement those.

   >>  A whole new set of objectives for the next plan based on the determination of the new group.

   >>  Sara:  There could be SPIL objectives that we did not complete that we choose to carry forward.  So it will involve research and looking at the data that this comes from the CIL network and involved in looking at other state plans, other data sources, I would recommend looking at other SPILs across the country to get some ideas.  We kicked around ideas around the independent living summit last night, leadership forum, a few things like that, they may get incorporated in the state plan, I do not believe the common disability agenda will be done by the time the state plan is ready to go so we will consider moving that forward.

   >>  Do they work in person, together, do they get together?

Is there a calendar?

   >>  Sara:  It's time intensive and the calendar.

   >>  Are there in-person meetings here where they get together?

   >>  Sara:  There is going to have to be in-person meetings to layout frame work on how to get public input and engage others in community -- ways to get community input and maybe surveys developed and in the absence of that group being put together I don't want to layout the specific tactics yet so it will be labor intensive and it will probably require some face-to-face opportunities to meet.

   >>  I just don't think it's the right time for me.

   >>  Sara:  And if it's not the right time for you based on your other priorities in life there will be opportunities for you to engage in this.  We have done statewide partnership meetings around SPIL development before, we have done all kinds of things to make sure all voices are heard.

   >>  I'm happy, I don't want to be an official role but I'm happy obviously to proofread, edit, you know.

   >>  Sara:  We always appreciate your proofreading and editing.  So I have two volunteers right now, if your term expires at the end of the year and you are not eligible for reappointment and Lisa and Diana are not in the category and I suggest you probably not volunteer and Miranda is kind of in that role and Dawn maybe eligible for reappointment but your term expires and Kellie is not eligible for reappointment.

>> Did anyone not here today express any interest do you know?

   >>  Steve did not -- Steve was also on the framework group.

   >>  His term expires with me.

   >>  Rodney:  He is leaving.

   >>  Miranda:  Mike was expressing some interest, he was going back and forth between two responsibilities.

   >>  Sara:  Mike decided to focus on the other responsibility on behalf of the Council which we will talk about later so he is not going to volunteer.  So I don't know.  Nick?

   >>  Nick:  What?

[Laughter]

 

   >>  Is Mia on the phone?

   >>  Sara:  Mia?

   >>  Robin.

   >>  I will do it.

   >>  Nick:  I would love to help.

   >>  Mia:  I'm still here.

   >>  Sara:  Robin just volunteered and I will go with the three because it took a lot to get the last one so all right.  So Rodney and I will be facilitating the process.

   >>  Miranda:  I have a question, we have quite a few people who are maxing their term off and there will be new people so maybe will the new people have the opportunity to join?

   >>  Sara:  This process is starting now, no, but they will have an opportunity for input before the final SPIL is submitted.

   >>  Do we know when terms end this year?

   >> Sara:  We have several people who terms end December 31st.

   >>  Miranda:  Quite a few people.

   >>  Sara:  We will talk about recruitment in a little while but again this will be the group that will get the ball rolling and then determine how to bring in all the other input that is necessary so public input, Council input and C I.L. and partner input so this is just the group that is going to lay that -- take it to the next level.

 

All right, okay, thank you.  So we move tell SILC structure workgroup conversation to the under old business so the next thing is the SPIL workgroup reports and we are kind of hitting a transformational or transitional phase with some of the workgroups but I will let Lisa speak on behalf of the children, youth and family services workgroup.

   >>  Lisa:  The children youth and family services workgroup was established almost two years ago because we recognized the fact that CILS and independent living network is the best kept secret for young families who have children who are diagnosed or identified with special healthcare needs for disabilities and so the workgroup identified two objectives they wanted to work on.  One was to work on the website and as you will see if you go on to the website it's very informational now and people can actually surf it to identity resources and from what we understand referrals have even been made through the website.  So the second thing is developing a brochure to talk about what the core services are and to identify where the disability network and centers for independent living are.  Our goal is to have something e-mailed to all of you prior to this meeting but there is a couple word changes that needed to take place before we could get it out to you which I hope you will respect when we change some simple words so we will get that to you and so our work at this point has been completed and I think what is going to determine where we go from here is the SILC committee restructuring and also when strategic planning took place in November one of the goals was to focus on the birth to 26 and so as well as the SPIL writing team and the goals coming out of that so the children, youth and family workgroup will get its task from the strategic planning as well as SPIL writing so and when the committee restructuring comes up, we will see our goals and our focus probably going according to that.

>> Sara:  Thank you, Lisa.  Steve lock was unable to join us and down at Austin, Texas at a cool music festival so service delivery workgroup report do you have one on behalf of the committee?

   >>  The service delivery workgroup took a look and is still taking a look at a lot of data that has been presented.  It's taking a look at data that from BSBP it's taking a look at CIL data and some information from DHS regarding one of their disability programs that DHS has.  We've merged all that data together and looked at it as a service area and where there are holes in the services.  That group is charged similar to Lisa's and not quite completed but getting close and we have been able to map those services out and what it is essentially at the stage now is a final analysis of where the service holes are in the state, four services and where the services are being provided and forwarding that information up in some of the analysis to both the Council and the SPIL writing groups for further discussion on where we are seeing those holes and what we may be seeing behind some of the numbers.  So we have done some really unique things with that group as far as being able to take a look at a lot of the data and I think it's going to be pretty powerful for the Council and the SPIL writing group going forward.

   >>  Sara:  Thank you.  Any questions for Rodney?

I don't think I asked if there were any questions for Lisa so any questions for either one.

Okay, Robin, want to do transportation workgroup report?

   >>  Robin:  Sure.  Well, since we met last, I was able to go to Auburn Hills and Rodney met me there and I was able to give public comment at MDOT commission meeting and it was kind of -- it was kind of humbling because the entire time I am up there and talking about these rather scary road conditions that they are saying, okay, we have to fix and they are tacking on these huge as astronomical numbers of how much it's going to cost and I get up there saying we need more money for public transportation but I thought that it went really well and they seemed really engaged and I got a lot of people coming up, to me afterwards and they wanted more information on my personal story and how it kind of really directed where I was going to live and have my skills in the state because of where transportation was available.  And I tried to make it clear that that is true with many people, not just those with disabilities but many, many valuable people for whatever reason, they don't drive.  And it's a universally applicable issue of public transportation.  So I felt like it went really well and I guess this transportation committee we are kind of looking at, okay, what next?

What now and I will say at the last meeting we kind of nailed down that we want to focus on, you know, informing and educating legislators and appropriate agencies and organizations, those that are making the laws and the decisions and educate them more and more about this issue, how it effects those with disabilities but really how it's universally applicable to everyone throughout the state.  And we -- this morning we met Dominic and I were present and then Dawn Reamer and Chris Simmons kind of joined in our conversation and we were talking about some of the newer, emerging transportation options on the scene such as uber and lift and things like that.  And kind of discussing how it could be applied or maybe tweaked and changed a little bit to be a service that people with disabilities could use.  So we are looking at how we would be able to communicate with those people.  The possible solutions that might be found within something that is already out there.  So it seems like a big -- it's more than Dominic or I totally understood until Chris and Dawn joined the conversation and opened our eyes to it's a much bigger thing than we knew but I think it's certainly worth looking into.  So we are going to do that.

   >>  Sara:  One thing we may want to consider, I know Dominic had mentioned having somebody from the department of transportation come speak to us but there is some pretty strong advocacy group called transform Michigan that we may want to closely connect with because they are pretty connected and tied in.

   >>  We had originally looked at I believe Dominic did, the he did like a write up on that group and dominant would you like to share what you discovered, what you thought about that?

   >>  Dominic:  We were trying to look at organizations that closely matched our mission and values and at that time, you know, looking at them, what they were working on just didn't match the mission and statement that the SILC had come up with and we were working on as far as the transportation paper goes.  And but we had other members looking at other advocacy.

   >>  Robin:  We revisit looking at them and seeing where we might be able to work with them on an issue but also I believe back when we had the meeting that all the CIL directors were at, I believe Joel told us about some organizations that renew of, that closely aligned with disability network Michigan's position, which also closely aligns with ours.  And so possibly connecting with them and trying to see, you know, what they are working on and how we might support them.

   >>  Sara:  I would not be surprised if we end up with a transportation goal in the next SPIL based on the work you have done in this and the need you discovered and it's a barrier to things so we will want to continue to research that stuff as it relates to the SPIL development.

   >>  Robin:  Right, so Dominic was mentioning that that is definitely something we need to focus on so I think in trying to communicate with these whether it be transform or some other organizations that Joel mentioned to us, trying to find out, you know, what they are doing and what they are working on and trying to figure out some way that of something we can put in this.

   >>  Sara:  Great, thank you, any questions for transportation workgroup?

Okay, and are you allowed -- are you able to stay to lunch for us and present as soon as we get all of our lunches and sit back down or are you on a time constraint?

   >>  I have a 1:00 appointment so but if this is not a good time I can come back at another meeting.

   >>  We have wanted to hear from you for a while.  How long do you think?

   >>  As long as I can be out a quarter to 1:00 that will get me to where I need to be at 1:00, is that possible?

   >>  Sara:  So I think we will probably -- okay, can we get our lunch and come back and sit down and make sure that SHE has about 20, 30 minutes and get her out by 12:45?

Yes so we will get lunch and sit back down and then and everybody is welcome to eat and then about 12:15 so we have a short period of time and we will move through that line.

[Lunch recess]

   >>  Sara:  We will have to reconvene here in 60 seconds so Vendella can get on her merry way.  All right, we are ready to get started again and there are a few people lingering out there getting lunch but out of respect for the schedule we are going to proceed.  As I stated earlier our Council is trying to connect with more of the state Councils that have similar missions or have or touched people with disabilities in some way and so we are really grateful we have Vendella here today just in our brief break before lunch started I learned that the development of the Council just hired a public policy learned Bret Williams was hired and we will get them working together and we have a lot of goals we want to accomplish and I'm a firm believer we need to bring all parties to the table to really move policy so with that I'm going to turn it over to Vendella.

   >>  Thank you Sara, I'm Vendella Collins and executive director of DD Council and have been there about 20 years and our Council has Federal legislation, Federal legislation is the development disabilities and assistance Bill of Rights acts and DD act has three components but I'm going to focus on state DD and first component is the development disabilities Council, the second one the protection and advocacy services and the third one is the University centers for excellence and in this state it's at Wayne state University and that is the DDI.  All three programs are funded by the DD act and there is a -- there is a DD Council in every state and territory and we also have national support through the -- our funding comes through the Department of Health and human services which flows down to the administration on intellectual developmental disabilities and the Council is prior to that and you will see a slide later on and DD act as amended in 2000 and its purpose is to ensure that people with developmental disabilities and their families have access to community services, individualized support and assistance that promotes self-determination, independence, productivity and inclusion.  And that is what we are about, our goals is to assure that people with developmental disabilities are part of the solution to any barriers that they face in their lives.  We make sure that everything that we do and as Lisa said nothing about us without us everything we do really is about helping people to help themselves.  The law is pretty clear and we will go into it on a different slide but the law is pretty clear that 60% of the individuals that are on our Council must be people with disabilities or family members and that is really to assure that their voice is heard because sometimes you can get into a room with a lot of professionals and people get very intimated by that and so to assure that people know that they have the strength in numbers the law is clear we have to have majority of the Council to be people with developmental disabilities and our Council is governed by the DD act at the Federal level and at the state level we have the executive order and it was actually redone in 2006 by Jennifer Granholm and that really gives us our state enabling legislation that really parallels what the feds say about the DD Council and its existence in the state and of course we have our bylaws.

 

And so as I said before we have a DD network and it includes the DD Council, the protection and advocacy system and then the University centers for excellence.  Now the DD Council is here as our mandate is to provide advocacy, systems change and community capacity building, that is what we do with our money.  The state protection and advocacy services, they are in existence to keep people with disabilities free from neglect and then education and research and training capacity, so when you look at all the entities involved in the DD act you see a whole person, you see people with advocacy and people in the legal system keeping them safe from abuse and neglect and in the training and educational project and looking at the person as a whole and also the DD act covers products of national significance that actually demonstrate the different ways that systems can impact people.

 

And then, again, this is the Council, the UCEDDS and P and A and one in every state and territory.  The DD act allows for funding from population base.  So Michigan we have about 10 million people, we get about $2.5 million a year for the work that we do.  Doesn't sound like a lot of money but it really is to leverage opportunities for people, to help systems to realize that there are different ways in which they can do business to have a more positive impact on people.  And this particular -- in our state a long time ago some of you may not even been born yet, I don't know, but back in the DD Council here was very, very instrumental in getting the family support subsidy.  I mean that happened in the 80s.  And the work, the advocacy work that the Council did garnered this state $15 million of general fund dollars that were put in the family support subsidy.  It may not sound like a big deal but Michigan was one of the first states to make this happen.  And what that did though is help families to keep families together.  It was the dollar amount was that people the dollar amount for was indexed as $60,000 and it has been $60,000 for all those years and it hasn't really changed but think about people can get a modest amount of money and they can use for any purpose that they need for their family.  And it's just not many places that you can get money with no strings attached and so the family support subsidy I think is a very big deal for families.

 

And so we engage in advocacy, capacity building and systems change activities.  In this state, every state has an opportunity to decide how they are going to do advocacy, capacity building and system and change activities and in our state we actually put the greater majority of our money into demonstration projects.  And we've had projects around transportation, making and assuring that people with disabilities can have access to public transportation.  We've had educational grants, we've had grants for early childhood development and grants for leaders and developing leaders among people with disabilities.  So we've had grants across the spectrum that allow for people to be more engaged in their own communities and have a voice in what happens to them in their communities.

 

And so the ultimately we have to enable individuals with disabilities to exercise self-determination, to be independent and to be productive in their communities.  And that may sound like a bunch of words but for people who actually access our projects and our programs it's a big deal for them because sometimes it's one of the first times they have had an opportunity to have some say so about what happens to them and who actually interacts with them.

 

And so not less than 60% of the people on our calendar are people with disabilities and/or family members and the deal about our Council is unlike some other Governor appointed Councils and I'm not sure about the SILC Council but our Council is a policy making body and are not just there for advice, they actually set the policy and the direction for the Council which in a lot of respects means that because you have a great majority of those individuals with disabilities that it should have a greater impact on people's lives in a more positive way.

 

And the law requires that we have various representation, the law required the DD act requires we have someone who represents the vocational rehabilitation services, we have someone who represents IDEA, we have someone who represents the older Americans act, someone who represents Medicaid agency which is title 19 and maternal and child health and then we have to have our two partners the University centers for excellence and protection and advocacy services so those are agencies and those are entities that actually impact how people live and so and then also we have other individuals that the Governor appoints that are people with disabilities and/or interact and engage in people with disabilities and care about them and want to make things better for individuals.  And so the act tells us that we don't do things in a segregated environment, all of our work should be inclusive and this is individualized and all of our activities really have to be competent.  And that people with disabilities actually have a role in the decision making.  Now, when we do a project, when we pull together and people are responding entities responding to an RFP we have individuals with disabilities that are on those review groups to make sure that the project is going to be a need we see and they are INVOLVED with all we do and people with disabilities are really in charge of what we do and we are working to create responsive systems to those individuals' needs.  And then we talk about when we talk about people with disabilities, people with developmental disabilities who are constituents are in our estimation and the Federal estimation people with the most severe disabilities because those are the individuals that sometimes don't get services any place else and they will go to other entities and they will be too severe for services or don't meet certain criteria but our job is to work with those individuals so when we say our community includes everyone our community really does include everyone.

 

The feds have some areas of emphasis that we are required to look at, now in Michigan, and other states too, not just in Michigan, you don't really get enough money to look at all of these areas of emphasis so the Council has to make some choices about what our priorities are.  But these, the quality assurance, child care, education and early intervention, employment, health, housing, recreation, transportation are areas that impact people's lives to the extent that the feds say DD Council look at these areas.  And in Michigan right now we are not necessarily focused on all of those areas in terms of our projects but we are focused on those areas in terms of our workgroups so we do work in those areas but we do not necessarily put out a particular grant in those areas.

 

Currently we have a transportation workgroup, a housing workgroup, a health issues workgroup, none of the employment workgroup per se but we have an economic justice workgroup who is looking at employment and we have -- we don't have an education and early intervention of workgroup but we do have the family and education individuals’ advocacy workgroup.  And so it does encompass the work we are doing does encompass all the areas of emphasis the feds are suggesting we look at.

 

And our national support, again, our money comes from the health and human services agency at the Federal level, it comes down to the administration of community living and then you will see to the left there administration and intellectual and development disabilities, that is all part of administration of community living and the good news about this is that aging is now part of the administration of community living and center for disability policy and aging.  Now, that and I understand that.

   >>  Sara:  We are there too.

   >>  The CILS are there too so we are all funded by the same Federal agency so I think that it just makes sense that we do more collaborative work so that we can get a better output and outcome for the money that the feds are putting here in Michigan.

 

We have to submit a five-year plan.  We are in the fourth year of our five-year plan.  We will be -- we are doing community conversations right now that you heard Sara talk about, our next community conversation is going to be in Gaylord on Tuesday, it's going to be at tree tops and so what we do with those community conversations is to listen to what people are saying to us about the kinds of things that they think that the Council should be engaged in.  We are gathering all of that input and getting input from various entities and hoping to share input with and from the SILC so that we can truly have and workout and have a state plan that assures that people with disabilities are providing the kind of advocacy and systemic change activity that is really going to have a more positive impact on people's lives so again we -- our new plan will be in effect fiscal year 17, so October 1, 2016, lit be operational.  And we are still going to be engaged in self-advocacy, self-determination, self-direction, those kinds of overarching goals that help people to be more in charge of their lives and so that is what we are going to continue to work on and you can go to the next slide.

 

And so and we all have our own mission, vision and values and Michigan, our mission statement is to support people with developmental disabilities to achieve their life dreams and our vision is that people have all the supports and opportunities they need to achieve their life hopes and choices because that is important.  When in our overarching principle is that people across their life span have are able to live a self-determined and self-directed life in a diverse community.  Our motto at my office is our community includes everyone and so we really are striving to make sure that people are living in an inclusive community.  And the good news is that at least from our perspective is the feds are moving in that direction with the home and community based rules that is coming out, with the WIOA and with all the things that help people to be very included where they live, who they work with, and where they work and so I think that we are going to be able to -- we are really going to be able to live our values and that is that the -- we have individuals with disabilities have a voice in whatever we are doing that people are leading a self-directed and self-determined life and helping those individuals with high complex leads because I think those are the most vulnerable people when it comes down no not having their voices heard and you can go to the next slide.

 

And then also addressing the economic justice of helping people with disabilities come out of forced poverty.  I think all of us recognize the system forces people with disabilities to be in poverty because you can only have $2000 in assets and those kinds of things and so we are hoping to be able to move that forward a little bit at least in Michigan we work very closely with the department of community health as they are working on the freedom to work initiatives and we have people with disabilities working to keep their Medicaid and do the work we do around community inclusion and really the civil rights of people with developmental disabilities to help individuals to help their Governments and to be accountable for the things that they are doing and not violate people's rights.

 

Again our core values and include people with high complex needs and self-direction and voice at the policy table, economic justice and inclusion in the protecting the rights of people with DD.  So our five-year plan as I said is the big picture of what we can do over the next five years to provide for systemic change, activities for people with developmental disabilities.  And I think I may have gone through most of this.

 

So community conversation is a way to listen to people, get public input, counsel member, staff, individuals with disabilities, community partners, and working together so that we can get a comprehensive view of what's going on in people's lives so that we can actually create opportunities to have better impact and greater impact on people so they can feel part of their community.

 

And this is just an emphasis, reemphasis of what I said and take the principles of DD act, the purpose of the Council, the authorities of the Council, all areas of responsibility coupled with the areas of emphasis, creating our state plan, determining annual goals and then putting grants out that is going to meet the needs of people and we monitor those grants that we have to have the kinds of results and impact that we are looking for.  Again, $2 1/2 million dollars doesn't sound like a lot but when you work with partners and can leverage that money for greater impact for people, I think that we all believe that it's worth it because what we do with those demonstration grants, when we demonstrate in one community that something can work we hope and we push for replication in other communities and other systems.

 

So, again, it's just a modest amount of money but it's based on the population and so and the Government goes around and talks about how he wants Michigan to be a premier state so people want to live here, so do we, so do we.

 

I think I've said all that already about the Federal allotment.  Oh, and then in Michigan like most states we have a designated state agency, we are a housing Department of Health and Human Services at this point.  And they are really the repository of our funds.  The Council really is, should be seen autonomous and provide people with developmental disabilities and we are housed in the department that actually provides a service for that same population, sometimes we have to agree to disagree because our advocacy is first and Foremost and it's not to promote the department policy but promote policies that have a more positive impact on people with developmental disabilities but at the same point in time they are not supposed to interfere and provide assurances that our efforts will not be interfered with by the department because of our Federal mandate.  And it does not -- the department should not impact or impinge the independence of the Council.  We need to be free to make the decisions that we want to make as Council members, again, our policy making body, so they make decisions that are independent of what the department policies are but we encourage the department to collaborate with us as we try to push forward for policies that we believe are in the best interests of our constituents and in this day also, I'm done with that, and in this state also we have our regional community coalitions and I'm not sure if most of you know about those entities but we do have them in most parts of the state and we use the Ricks for our Federal mandate of -- for self-advocacy and promote self-advocacy within the groups and right now we are working to look at strengthening that network and may mean taking it outside of the Council so the network can be more independent of Council's decision.  Decisions because if we want to promote, again, people with DISABILITIES being more in charge of their lives we are starting with ourselves as well and trying to back out of being so directive with our self-advocacy network and we are trying to promote a more independent network.

 

So, again, we have our five workgroups and we encourage and would like participation from any of your members to be on our workgroups.  Again, if we are working together for systemic change it would be wonderful to have our work as collaboratively as possible, be wonderful to continue to forge relationships so that when issues come up that effect people with disabilities that we already have partners that could help us to speak in one voice and so I'm really looking forward to a more collaborative relationship with SILC and I'd be happy to answer any questions that you might have but I do want to leave Rodney with you some information that you might want to give to your members at a later date.

   >>  Sara:  You have two minutes before you have to get on the road so are there any questions for Vendella?

   >>  I flew through that and I apologize.

   >>  What is your most successful program?

   >>  What is our most successful program?

And our office is really kind of split into three areas.  We have a program which deals with all of our granting processes, our public policy that really engages in working with the legislative body and policy makers and of course we have our self-advocacy so I don't know if people consider those programs but if you ask me what has been our most successful projects that we funded I think that, that is a tossup.  I believe that it would be more about the leaders, developing leaders, developing opportunities for people to find their own voice and you can speak on their own behalf because once that happens and they develop their own networks where they are speaking out to and the networks develop other networks it can really spread like wildfire and that really then gives us a bigger bang for our buck if you will because everyone won't be able to attend one of our projects but certainly whatever they have learned they can impart to people they know and those individuals can learn so it can be a training and we don't set them up as trainers and we set them up for people to engage in and the people are engaged and committed to it and they live that and then they can spread it that way so I think developing people to be better self-advocates and leaders is probably one of the most successful things that we do.

   >>  Sara:  Thank you so much.

 

 

 

(BSBP PRESENTATION WAS ORIGINALLY IN THIS SPACE)

 

 

 

   >>  I appreciate learning more about WIOA and we have been focused so much on WIOA on the independent living program we are learning, WIOA around the VR program kind of incrementally and our brains can only absorb so much of it.  What I'm going to do is I'm going to save the other reports from our ex officio and IL partners until we get through our conversation around consumer control and Robin, just a clarification did you need to say anything more about the presentation to the commission on transportation?

Because that is on the new business part of the agenda.

   >>  Robin:  I believe the actual comment that I made is in the packet.

   >>  Sara:  Did you want to talk about that further under new business or did you want to not?

   >>  Robin:  Rodney was there, is there anything else that I should speak to?

   >>  Rodney:  No, I think you covered it all, it was a great experience but I think she covered it all in her report.

   >>  I'll just mention I just sent Rodney the lift wheelchair policy so if you want to send that out and lift is like uber.

   >>  Right.

   >>  So maybe we can learn something from that.

   >>  Sara:  What I would like to do is invite our guests up, Eleanor and Darma and anybody else that came with you, do you need any chairs upfront here?

   >>  No.

   >>  Sara:  Okay so to put this in context you guys have probably either read or heard Darma's public comment to our Council over the last few business meetings and what we established when the CIL and SILC met in November the desire to create a common vision for consumer control and we have interchanges with Darma and Eleanor and we feel it's a good time to come and talk about the concept of consumer control, what that means, hear from their perspective and then I want us to have a dialog about that and so I'm not going to assign a specific timeline but let's let them get through their presentation and then we will open it up for a dialog.  You also have materials that were presented and they were e-mailed out, Rodney, if you need them e-mailed them Rodney will e-mail them to everybody but we do have them in front of you and they are on the website too so if you need to see them on the website and go through them that is fine.

   >>  Rodney can you move down a little bit?

   >>  Okay, well, thank you very much for the opportunity to be here.  These are things that we care very passionately about.  In the packet that you have there is a handout that says practices of consumer control at my center for independent living and there are some statements about princes of consumer control when they are being done and so you all have a center somewhere in your world and I'd like you to think of that center and just check these yes we have that or we would like to improve that.

 

And then so I'm thinking of this as a pretest and then you have a couple objectives from a work plan.  It's titled example work plan.

And this is our posttest.  So we're going to talk about this at the end.  And you also have a sheet that is the objectives so when we get around to talking about implementing and policy making in the organization this is some of the things you might add to your own organization's work plan.  You will see that these are all referenced on the presentation.

 

And then, lastly, the -- we have taken the opportunity to look at your old SPIL and just some language that would make those goals and objectives more consumer oriented.  That's what you have for extra stuff.  And I'm Darma, this is Eleanor and she is going to start.

   >>  Hi, everybody, my name is Eleanor.  I'm going to be going over some basics about consumer control in Michigan CILS.  You're probably wondering who the heck we are.  We are speaking from experience.  We have been involved in advocacy for the past six months on specifically on the topic of consumer control.  We are people with significant disabilities.  Consumers, advocates, members of the Muskegon disability community.  Our goal is a world class CIL to maximize leadership and empower independence and productivity of individuals with disabilities.  You can visit our website if you want to read more about us.

 

Okay, goal, this is what Sara provided us with, a goal that you guys came up with, the SILC and the CIL network will create a common vision for consumer control and involvement.  Specific action steps, one explores current practices.  Two, identify strategies for enhancing consumer control and involvement and, three, incorporate strategies into the future of SPIL.  So that kind of outlines where this presentation is going to go.

 

Defining significant disability.  We could sit here and have a conversation for the next year and a half about what those words mean to specific people but it's written in the rehabilitation act what significant disability means for the purposes of consumer control in a CIL so we don't have to reinvent the wheel, we just got to look it up.  An individual with a severe physical, mental or cognitive or sensory impairment whose ability to function independently in the family or community or whose ability to obtain, maintain or advance in employment is substantially limited and for whom the delivery of IL services will improve the ability to function, continue functioning or move towards functioning independently in the family or community or to continue employment.

 

Defining consumer.  A consumer identifies as a person with a disability and a member of the disability community.  A consumer benefits directly from consumer-driven advocacy and therefore acts in the interest of the disability community.

 

A consumer has experienced dependence and they have experienced barriers.

 

People who have disabilities that are not significant do have a place at the CIL in the 49%.

 

What is consumer control?

Consumer control is defined as significant representation, power, authority, and influence of individuals with varying disabilities in all aspects of the organization.  Authority by consumers over the organization itself, choice by consumers over the services they receive and influence by the organization in overcoming community barriers that inhibit its consumer population, that means direct disability rights, consumer-led advocacy.

 

Achieving consumer control.  Consumer control is achieved and sustained by an organization that maintains the ability to be molded by its constituency.  To implement consumer control principles, four areas comprising of the full range of CIL functions and operations need attention and we will go through each of these four things policy making, EG the board of directors, staffing, services and community advocacy.

 

Consumer control at the policy level.  The board.  The board of directors is the legal entity and power to establish the value base of the organization to develop policies and oversee the affairs of the corporation.  The board assumes an important stewardship function and ensuring that the mission is fulfilled and that public funds are efficiently and appropriately expended.  The board of directions is responsible for strategic direction within the law.  If a board is not comprised of a majority of persons with significant disabilities, the board and the organization itself are operating illegally.

 

A board comprised of persons with significant disabilities is an important way of enacting consumer control but it is not enough.  Board members must subscribe to, believe in and adhere to IL facility including consumer control and the interest of able-bodied people and people with a diagnosis who do not believe in IL facility are well represented in said, it's not okay to weigh their interests as equally important to the interests of the disability community.  If you are not sure your CIL is consumer controlled it is not consumer controlled.  We will come back to that in just a minute.

 

And I just also want to quick talk about cross disability and community base which is also required of CIL.  Cross disability means on the topic of the board of directors at a CIL that autistics, people with developmental disabilities, mental illness, sensory disabilities, every time of significant disabilities belong on your board.  If they are not there, you got a big problem.  Community based.  Your board should truly represent the entirety of your local disability community.  Should be young and old, guy and straight, black and white.  Should be nonpartisan, but not a political.  And filled with people of color and people with every type of disability.

 

Screaming.  Some of you are probably familiar with this term borrowed from voc rehab and it means to advance individuals with the least significant disabilities in order to create the illusion of consumer control without having to do the hard work of affirmative action or place accommodation and confronting ableism in our own spaces.  This brings us to consumer control at the staffing level.

 

First we will talk about the executive director.  Executive director's perspective is critical to translate principles into practice.  Can a CIL have an executive director who is not a person with a significant disability?

Answer, it's not common outside of the State of Michigan.  But it is legally possible if stringent safeguards insist to ensure their success.  Safeguards include a strongly consumer controlled board of directors, strong affirmative action hiring and board appointment processes and dedicated measurement of and commitment to consumer control.  Every CIL should be able, willing and happy to demonstrate their commitment to consumers control at any time especially those with an able bodied ED.

 

Decision making staff and support staff.  Consumer control means having CIL staff that flecks disability representation and provides substantive participation and input.  Staff with disabilities who are grounded in IL facility, able to operational its values and sure the experience of disability is critical to enacting principles of consumer control.  It's also important to hire people with significant disabilities for support staff and clerical positions, that demonstrates commitment.

 

Okay, consumer control over the advocacy agenda.  The involvement and control of consumers in a CIL advocacy effort is fundamental to the mission of creating change and empowering people with disabilities to expand options and enhance the quality of their lives.  There is one sure way to tell if a CIL is consumer controlled.  Is it pursuing charity or advocacy?

 

 

Charity is the opposite of advocacy.  Members of the IL community understand through direct experience that charity is the antithesis to advocacy and CILS that operate as charities are doing direct harm to the advocacy community.  Charity remains the favorite activity of well meaning, able bodied people who do not understand independent living but nonetheless feel entitled to speak for us while actively silencing our voices.

 

Now we are going to talk about affirmative action.  CILS are required by law to employ affirmative action and some have nondiscrimination policies and procedures for affirmative action policies and procedures, there is a big difference.  Affirmative action is active, ableism is acknowledged and addressed.  Nondiscrimination is passive, ableism is ignored.  Affirmative action in affirmative action experience with significant disability is actively valued.  And nondiscrimination disability and discrimination are not considered at all and ableism is through neglect.  It's time to discrimination, affirmative action takes the discrimination of people with significant disabilities in everyday society into account.  Affirmative action is the law for CILS.  How to affirmative action.  One, create an affirmative action plan so that your CIL is prepared to outreach to people with significant disabilities.  Two, hire people with significant disabilities.  Absolutely no more excuses, period.

 

If you can't find qualified individuals with significant disabilities to staff your CIL you need to check yourself for internalized ableism.

 

Looking for consumer control.  The difference between an organization that is consumer controlled and one that is not is super obvious.  It can be seen in priorities, activities, materials, language and partnerships.  It can be directly observed through the ways representatives of the CIL, speak about their own experiences and their relationship to the local disability community.

 

What consumer control looks like.  Good CILS, recruit, train and support people with the significant disabilities.  Bad CILS try to think who they can justice as a person with a disability at 704 time.  Good CILS embrace, enhance, lead and support disabilities rights advocacy in their communities.  Bad CILS silence advocates, sideline the voice of people with significant disabilities trying to create change.

 

Good CILS do advocacy and bad CILS do charity.  Good CILS identify with the independent living model and see the disability community as their peers.  Bad CILS identify with the business model, charities and see other service providers as its peers.

 

Good CILS build community.  And serve as a gathering point for the disability community and its agenda.  Bad CILS only welcome consumers they receive additional funding to serve through fees for service.

 

Good CILS are led by people with significant disabilities who have experienced oppression.  Bad CILS are led by rehabilitation and social service professionals with minor or no disabilities.

 

Good CILS use the independent living model to define disability.  Disability is experienced through purposefully constructed and maintained physical and attitude barriers and bad ones use the medical model to define a disability, any diagnose will do.

 

This is a list of things that we have been hearing a lot lately and the first one is the new go-to thing to say whenever CILS are questioned about their commitment to consumer control which is CILS are private non-profits.  This is technically true.  501 C 3 is legally characterized as a private nonprofit and that has absolutely no bearing on whether a C I.L. has a responsibility to be consumer controlled and the rehab acts says they have to be non-profits and also say they have to be consumer controlled so it's just something that is really starting to frustrate advocates because the two things have nothing to do with each other.

 

There is no requirement that staff or board have significant disabilities.  Slash we all have some type of disability.  For the purposes of consumer control and a center for independent living we most certainly do not.  Significant disability and the definition is written into law.

 

Charities is a valid form of advocacy.  No.  We can't make people disclose a disability.  That's true.  Nobody can make another person do anything.  But that is not in any way excused the CIL's responsibility to be comprised 51% of people with significant disabilities.

 

And we don't consider disability at all, we don't want to discriminate.  I think we covered that under affirmative action.

 

Okay, that's it for my part.

   >>  Okay, first part, I know we went around the room and people introduced themselves but I still didn't get a sense of actually who the audience is so if you don't mind I would just like to ask how many people in the room identify themselves as consumers?

 And how many people in the room identify as an individual with a significant disability?

 And how many people in the room are employed by or on the board of a CIL or state agency?

 Well, you may or may not have heard people talk like Eleanor.  It's become not very common to hear real advocacy in our organizations.  But let's say if we did want to have a real world class center for independent living how would we do that, what would it look like?

And on the handout as I said earlier that says outcomes, these are ideas that you will see me talk about in this presentation so just so you know there are references to that.  Okay, strategies to prepare for consumer direction at the organizational level.  There are probably many but one is to make consumer direction a goal.  I know and you know that if we don't write it down and say we are going to do it, it probably ain't going to happen so first of all we have to say it, we have to say it before we do it.  We have to provide opportunities for our staff, service users, funders to learn more about IL philosophy.  You know how the react act says we are led by philosophy and history, well, got to talk about it.  We have the old people like me have to talk to the young people because different generations have had quite different experiences.  So if we want our philosophy to be living and we want it to be present in our CILS we have to learn about it.  The materials that Eleanor and I are using are mostly from the independent living research and utilization website so over the 25 years that they have been around, that is the organization that does the academic research and training on independent living.  And they are still led by people who were there at the founding.  So it certainly is an entity I trust.  And it's full of tons of stuff.

 

It's better if we are all learners instead of assuming you know everything.

 

Okay, select managers and service leader whose are committed to enhancing their own competencies in consumer direction.  I guess you need to be a business, that is true, you better learn how about to do business but consumer direction is something you also need to learn and be competent to do.

 

Promote collaboration leadership approaches.  This is complex.  It requires you to relinquish internism in favor of welcoming contributions of others.  When you do that it significantly is more enabling to your service users.  Agencies can select leaders with this competency and they can support leaders in acquiring it.  Strategies for effective leadership in consumer directed systems.  Learn to share control and authority.  One meaningful way to share control is to establish an advisory board or task force that includes a substantial number of service users and other advocates who have authentic power to influence policy, service delivery and evaluation of services.

 

Those satisfaction surveys you are passing out, not enough.

 

.

   >>  Sorry, I can barely hear you.

   >>  Okay, I think most of this, the Michigan CILS pass out a customer service survey and do some phoning and then they report that on the 704.  Not adequate.  That is not input from the community.  Input from the community is a lot more complex than that.

   >>  Okay, thank you.

   >>  Acquire a level of comfort with messiness and participatory process.  Dictatorships are easy.  We don't have to wait for somebody to tell us what we want to think about because they will.  In a CIL we all have to think.  We all have to share.  We have talk about the stuff we disagree on.

 

Restraint vested interest that might limit service users' potential.  When users of service have an authentic role in directing the systems that affect their lives it's much more likely that the focus will remain on what is the best interest of all concerned.

 

So there might be a lot of things that would be good to do, people who experience discrimination, who encounter barriers to everything in their life, some people are totally thwarted every time you do something and if you know that like the early advocates you know it's not okay, it's not just so when consumers are in control, consumes that have these experiences then you are much more likely to stay focused on the mission of the CIL.

 

Strategies for working with service users.  I'm saying service users, I could have said consumers and could have said recipients.  Whatever word you put in there we are talking about the people that we are working with, the people that are on the receiving end of those services and in a CIL the person providing the service, the person receiving the service are equals.

 

If -- the world doesn't need another case manager, expert, somebody who is going to tell me what the wrong with me and what I should do about it.  We got plenty of those.  What we don't have is somebody that will sit down as my peer and say gosh, you know, I heard other people tell me about that or I know, I know that happened to me at MRS too, you know, we have a shared experience and that is the culture of consumer control.

 

Really, you don't know what we say behind your back.

   >>  I have broad shoulders, that is fine.

   >>  Working with service users, properly support people with their efforts to have more control.  Providing self-direction opportunities may not be enough to assure empowering self-direction outcomes.  Systems should be designed from the outset to provide additional support in the form of training and continued facilitation.  Avoid structures and practices that undermine personal power of service users.

 

Okay, so when I get to your office and I'm say applying for services or I'm doing an annual e-val get that form out, number one, let's go through this form, you know, we are going to -- this form is going to figure you out and that is a barrier to -- I don't think I can fit my life on a form and I can answer the seven questions but you won't know me and what I want so that is a barrier to my control over what is happening.

 

And there are lots of other ones like okay if you are 15 minutes late for your appointment you will have to reschedule even though there is a six-week waiting list because I'm really busy.  Does this person need help?

Is that need going to wait six weeks?

We sort of create places for people to work and places for people to receive services that are not very friendly, not very supportive, so if you are doing that figure out how to do it different.

 

Make efforts to relieve people of their fears of change, uncertainty and reprisal.  Service users report fears of retaliation for making complaints related to the services they receive.  Advocates express similar concerns that they will experience a backlash from officials when they take a strong advocacy stand.

 

I think Eleanor and I feel that we have been isolated, shunned, treated as irrelevant, you know, and maybe some advocates can stand that but do you know what there are 40 people that started out with us, there are not 40 left because most people just do not have the capacity in their life to be treated like crap.  And they are going to stop advocating.  So how do you avoid that?

How do you make sure that you are not quiet, silencing the voice of people that you need to hear from?

Well, you do that in the policy.  You need to have a policy that says we are open to complaints and don't make somebody complain to the person they are complaining about as the first step because then I can't do that.

 

Okay, welcome thoughtful dissidence as a natural part of expressing autonomy.  If I'm equal and in control of myself I can disagree with you.  And that should be okay. 

We don't have to agree about everything but if there is only one way to do it and it's your way, then we all lose.

 

Recommendations, implementation of standards, indicators and measures of consumer direction.  Ensure that service users have leadership roles from the very outset of all policy development, program design, program implementation, and related research initiatives.

 

Policies and systems design enhancements related to consumer direction.  Address the fear of reprisal, I just said that, approach recommendations to create or enhance consumer direction, approach for consumer leadership and decision making.  Employ service users as consultants in policy review and system analysis of another means of securing end user perspectives and system design and enhancement.  So after you collect those section surveys and you say what did we learn from that, well you need some people at the table who were filling out the surveys and using those services.

 

Equalization of knowledge, this is one of my favorites because I have been at lots of meetings where consumers were invited to the table and they are happy to come and happy to have their lunch and happy to be treated with respect.  But nobody told them anything about that great big system that is existing around the topic of this little meeting and so they can't really be effective.  They don't have the knowledge and the preparation in order to be effective at your meeting.  And so you need to make sure that they have the stuff.  You can't expect them to come in and work just like a professional sitting next to them.  They are only taking up a chair then.  So share your knowledge.

 

Consumer directed services.  Needing support is an ordinary human condition; most people are both dependent and interdependent on others.  Truly responsive systems can allow for support and facilitation of decisions about the services provided and how they are provided.  Training information and exposure to role models, access to experienced peers, consciousness raising related to consumer direction, I had a job where I was supposed to be empowering consumers but the staff, I could empower them but then they go confront the staff who is having none of it.  So that was not useful to me.

 

Okay, so there is a big overview of what kinds of things you can do structurally to make an organization consumer controlled and that is the second part of our presentation.  How is our time?

   >>  Sara:  You are at 1:52 and we have to end the meeting by 3:00 and have everything on the agenda done by 3:00.

   >>  All right, somewhere in your packet you have a -- something that says the SPIL and you will see it has multiple colors on it so that it says what I did was take some goals and just one goal off your SPIL and a couple objectives and I wrote in some language that is -- that includes consumer direction in the SPIL.  And we don't need to go through that, but one of the things that the question is:  Is the SPIL, is the SILC agency led or consumer led?

   >>  Say that one more time.

   >>  Is the SILC and the state plan agency led or consumer led?

   >>  Thank you.

   >>  Okay, and in this category CILS are agencies.  That's why the rehab act limits the number of people who are employed by the state or employed by CILS as members of the SILC.  Because there needs to be a large number of people with disabilities who are not paid for but are there simply because of their commitment to the disability community and the hope that we can change society.

 

So anyway I just offer that.  And let's open it up to questions, comments, remember I just said I liked dissidence.

   >>  Sara:  Well, good, let's have some.  So I think for the purpose of this, just I want to engage in open dialog and seek some clarification or deeper understanding of the comments made.  I think what -- I would go back to Eleanor's comment the world class CIL that keeps ringing in my mind and how do we create world class keeping in mind that SILC doesn't have authority over CILS hire, we don't have authority for monitoring CILS but do you know what we need to make sure the state plan.

   >>  You are educating them.  You are supporting them with training and philosophy and you might not be monitoring them in terms of punishing them but you are very much involved with CILS.

   >>  I'm not saying we are not, I want to make sure we don't think there is an authority that the members of this Council have.  A lot of our Council members are in the learning process of what our roles are too so anyway no more.

   >>  Dawn:  You raised some valid points and opened up a really good discussion and diversity is a very important goal and I think it's very important.  I do have a concern with this whole concept of screaming and the reason is that I have a child who is auto spectrum.  Under the definition he absolutely is impaired.  But because his disability is autism you can't see it.  So the challenge is, you know, our experience has been that he is not really accepted by the disability community either so he has been an outcast there, he is not accepted by his typical peers and he really has no place except the autism community.  So what you're saying here I mean you look at him and you would think he wasn't disabled and you would make that as sum shun.  And I guess the challenge is how do you go about proving your disability when legally you know under the Americans with Disabilities Act you cannot make that inquiry for purposes of hiring.

   >>  Employment.  Here is the thing about consumer control, when you just walk right up to somebody and ask them whether they identify as a person with a significant disability if they have not been already trained to do that, they will give you an honest answer.  So I don't know your son.  I don't know him personally but when he grows up I imagine when somebody walks up to him and says are you a person with a significant disability he is going to have a story to tell.  And that is what a CIL doesn't have to be full of people with visible disabilities it has to be full each one of them has a story to tell how disability has impacted their life.

   >>  But right now he can't tell that story.

   >>  Well, he is a child.

   >>  So here is something that in 1990 the vision was that this would be cross disability, that we were going to fund this diagnosis and stop making organizations and funding that is dedicated to cerebral palsy, we are going to stop making things that are just related to the deaf.  When you take the pie and you start chopping it up then there is not enough pie so the original people thought we need to be a disability community, we need to be inclusive of everybody, this is where I get my power, I am in a community of people like me because whatever his diagnosis is and whatever mine is I can tell you we have the same problems of transportation, education, employment, housing, we have the same problems and so let's focus on solving the problems.

   >>  And we do, CILS need to be more welcoming to people with all types of disabilities for sure.  I agree, that's why I said you need autistics on your board.

   >>  And if your board is so darn important that you can't have a person with a developmental disability or an intellectual disability, you need.

   >>  Get a hold of themselves.

   >>  You've missed a voice, if your CIL serves 20% of its consumers and have developmental disabilities or autism when you report on 704 and 20% of the users have a development disability but you have none on your board and none of your staff where is their voice?

That voice is much more important than whether or not they know how to read a financial sheet because I can train them how to do that and I can hire somebody to do that.  What I can't do is get his voice without having him present.

   >>  But there is other ways to hear a consumer voice.

   >>  How?

   >>  You can have community forums.

   >>  Yes.

   >>  You can do surveys, I know you don't think they are sufficient but you can still do surveys.  You know, the CILS are constantly receiving feedback, maybe you don't think they are doing enough with it but they are constantly receiving feedback for each of the consumers and Miranda receives feedback on a regular basis and that is speaking and taken into account so you can't assume that just because the person sitting on the board looks a certain way that they are not hearing you.

   >>  No, but I don't want somebody sitting on the board who doesn't say I'm a person with a disability.

   >>  We're not looking to assume.  We are looking to have a dialog and looking to have board members who stand up and say you might not be able to see my disability but here is my story.

   >>  But some people are not comfortable telling their story.

   >>  And they don't believe in the 51%.

   >>  It's not really a question but a comment.

   >>  And then Kevin.

   >>  I never thought as a non-disabled person serving on the SILC I actually would have the opportunity to advocate for the non-disabled as opposed to the disabled but I find myself in that very position today because I am not a person with a disability, I am however the mother of a child who has a severe disability who has since passed and I think that we need each other.  I have a lot to offer this SILC even though I feel discriminated at this moment because I cannot fill out this form, this does not apply to me right now.  I do not have a CIL.  My child has passed.

   >>  There is still a CIL in your community.

>> Let me speak for a moment please because I actually think this has become very adversarial and I'm sorry for that.  We have something to offer, we are there for each other and I can step outside and become disabled in an instance and those of us who are not disabled are very aware we can become disabled at any moment and someone with a disability might in an instant be able to overcome their disabilities and there are some disabilities that are temporary although many of them are not.  And so you have something to offer, we have something to offer and we need each other.  And if I have the skills and the compassion to serve in my position based on merit at whatever agency you are coming to to look for support and services I would hope that even though I do not have a significant disability that I can be of service to you and you can be of service to me.  We are one community.

   >>  Absolutely.  All we are saying is that the law makes a specific statement about what that is.

   >>  Percentage and the balance and I absolutely agree with you but it seems to me that doesn't seem to be sufficient is what I'm hearing today.

   >>  So I wanted to give Kevin a chance.

   >>  I actually have a couple of questions if we can't get to them I will contact you directly but Eleanor I want to go back to that because my wife died last August.  She was significantly disabled.

You would never know it looking at her because if you ever saw her it was the rare opportunity she felt well enough to go out in public.  If you ask my wife, if you met my wife my wife would never tell you she was disabled.  It would never come out of her mouth.  And so I guess I'm just sort of taken back by the position you share and that has nothing to do with communications we have shared, I just want to state that.

   >>  Yeah, in my opinion she would certainly qualify for IL services.

   >>  In a heartbeat.

   >>  Undeniable but in terms of could she count in the 51% for consumer control?

That is a question.

   >>  Okay.

   >>  Or a whole other 49% guys don't forget.

   >>  Well, I just want to share that because this is a perspective that I don't think you're looking at so I apologize and I don't mean to give you that.

   >>  I want to give people a chance and because we let you guys have a chance to talk, I will give you a chance to wrap up some thoughts but I want to give others in the room an opportunity to speak too so Lisa.

   >>  I appreciate you coming here and sharing what you have shared.  But I guess and I think what we are looking at is an opportunity for, say I was to do self-evaluation but I think it's also an opportunity to look where we can to look at how can we do this for the common good and I will tell you that asking people here who are disabled and I tell you I was a recipient of CIL and I was a young professional who had a stroke.  I had to go to CIL as part of rehabilitation and I also have an illness and if you were to ask me on any given day because I have the I look fine syndrome and the way you asked today I'm offended but I'm going to get beyond that because I'm also the family of a son, of a father and of other people that have disabilities that you may think don't fit in that 51% but I have a lot to offer based on my experience of my own disability that because I don't look it as a disability, I look at it as being able to do things in a positive way.  I don't look at it as a crutch or anything like that and I would hope that this Council would look at that when we look at the CILS and give the CIL credit for what they are doing and maybe take what you're suggesting as a tool to do some self-evaluation to see what could be done better, not to come in here and think that you're going to tell us that everything is being done wrong and to put people on the spot, to put a mom with a child who has since passed with a significant disability who has a lot to offer to committees that you're talking about or me who is typically healthy as a young adult who developed an illness, had a stroke, had to use CIL services on the spot like that and we continue to offer and so I would hope we could have a partnership at some point to look at what you're trying to share with us because in the disability world we have to talk about what is going on and in order to make our independent living system better we give opportunities like we have given today to hear what you're saying and so I hope that we can go on from there and put it out on the table of let's meet a common ground so there is not a defense and there is not an offense because that's what is going on right now and I am one that when I sit at these tables and I collaborate and I use my experience with myself, my family and families of individuals I worked with over the years I bring those voices but you're really tapped in when you went around this room and had everybody raise their hand who was what and I'm sorry you are laughing.

   >>  I want to give Jim a chance to talk.

   >>  Go ahead.

   >>  You want to respond.

   >>  Thank you.

   >>  Sara:  Jim has deferred back to you guys.

   >>  I'm sorry.

   >>  Sorry, we are listening.

   >>  Well, if you want to comment first that is fine, I don't want you to wait with your comments while I'm speaking.  Okay, first of all, I applaud this conversation.  Maybe not the nature of it but the necessity of it.  And I want to say a couple of things that I want to echo all couple of remarks from what I hesitate to say both sides, okay, because I hate dualism as a rule of thumb because it doesn't allow solutions to develop.  It just delineates the same problem in two spectrums of light so it doesn't look at all the solutions that are possible.  It just divides, so over the course of my some years in doing disability work I've noticed that there is some drift from the core values that got this independent living thing moving.  Some of it is based on the progress that has been made, you know.  It used to be when I started this it was white guys in wheelchairs or white guys with white canes and it was that and it was barriers and it used to be that and we have come some way in that and that is a good thing.  Have we lost in the mix, have some centers for independent living been looking at other ways to resourcing and drifted a little?

Absolutely.  Absolutely.  That's true.  However, the process of looking internally and faulting and cannibalizing is not productive and the reason I say that is there are thousands, millions of bankers, electricians, school teachers who need to understand that philosophy out there.  The more we spend carving each other up on how clearly we use it, the less time and energy we spend out there.  And so I think we have to be very careful about what we're doing now.  Do we need to urge each other to stay ton core of consumer control?

Damn right we do.  Do we need to make sure that the voice of the people in our families, in our neighborhoods, in who have disabilities significant disabilities who defines significant I don't have a damn who gets to define it on any given day, right, I'm legally blind or blind, I have some psychological disabilities and in a dark room, you know, my PTSD is way more significant than my blindness is, right, so who gets to define that's in my in CIL world, me.  Okay, but the more time we parcel each other up, the less time we spend building the we and what we need quite frankly is that time and we need to educate each other about how to be together and what significance and we do need to common ideas about that and do I believe that the SILC facility is at the core of that?

Yes, I do.  But I think we need to be very careful about blaming.  There is a phrase I use a lot in the office, don't blame just change.  So come up with solutions for change rather than definitions for people, then we have something to share, that's all I'm going to say.

   >>  Good job.

   >>  Anybody else?

   >>  Do we have a couple minutes?

   >>  I would love for you to have this conversation a little bit longer if you want to.

   >>  We have our thing to do.

   >>  Can I ask a quick question?

   >>  Getting back, I just want to talk about the ideal scenario because I know you touched upon it but I don't know if you fully explained it but if you had not say CILS don't fit this criteria but if you had CILS that had a board that 51% or more were significantly disabled and the staff met with appropriate criteria, where do you see your involvement if you are not on the board or you are not a staff member where do you see your involvement and at what level?

   >>  I just want to say first of all that there are hundreds of CILS across the country that are consumer controlled and are showcasing that beautifully.  Access to living is the closest one that is close to home, Midwestern and it's in Chicago and they hit it out of the park with advocacy and they bring consumers in at every level of the organization especially in their advocacy activities.  So, yeah, I'd say that is one major area where people with disabilities should expect to be involved in their CIL.

   >>  When the rehab act says community based they are not talking about geography, they are talking about, we talked about is it a new CIL, what does it say, what is the quality of the community that wants this, who are the key disability advocates already there so if you feel hesitant about advocating directly with an organization and you have 20 advocates who you know are not going to be silent, you know, are not tied to any money, they are free to say this then you have a resource, I can go to legislator and lobby because I'm just a citizen so the fact that you are building a disability community, identity and culture and you are building a resource for each other and that's where the power is.  The power is in the community.

>> So can I ask, so the situation could, and I'm talking about you too in particular and only because you are at the table right now but if that scenario existed, it wouldn't have to necessarily be you that is at the table all the time, for input, as much as the community at large is represented.

   >>  That is what we want, that is exactly what we want and if I have to leave and never speak to my CIL again when this is done, that's what is going to happen but I am going to bring consumer control to my CIL.

   >>  Okay.

   >>  Are you specifically airing grievances against the Muskegon CIL.

   >>  We are not doing that.

   >>  Is that your CIL?

   >>  Yes, it is.

   >>  And let's just think.

   >>  We have some nice comments from Tamra actually.

   >>  Let's not go there.

   >>  But let me just say and I don't know what I was going to say so here is this work sheet and let's just look at this, this is -- this fits in with the SPIL, it identifies funding, it identifies the objectives that these, this work plan is working with, okay, so I'll read the goal and you tell me what you think might be a question about it.

   >>  Way to improving.

   >>  Sara:  I am running a little out of time.  This group probably doesn't know what a CIL work plan is or what it's for and how it needs to align with the state plan, can we use just one example and then wrap up today?

   >>  Sure.

   >>  Can I share about a work plan, each CIL when they submit their grant every year to the department of human services they have to submit a budget and a work plan so what Eleanor and Darma are sharing is what a work plan can look like.

   >>  I'm showing you what is actually somebody's work plan and what kinds of problems get incorporated and are proved by lots of people that are just, you know, way off, whatever.

   >>  Sara:  Using a real work plan.

   >>  Yeah.

   >>  Sara:  The only people that approve the work plan is the department and human services.

   >>  The board.

   >>  Sara:  The board and department as far as funding and we have to ensure that it has alignment with the state plan so they have to reference a SPIL goal and I wanted you guys to know that from somebody who are not closely involved with the CIL so if you maybe could pick one of the three.

   >>  Let's just start out with the goal statement.  Somebody want to read that?

   >>  Up at the top?

   >>  Goal one, community and individual advocacy any talents I.L. will empower persons with disabilities to take ownership of their own lives.

   >>  Okay, what do those two components to that statement have to do with each other?

   >>  Sara:  Community individual advocacy and empower?

   >>  Well, if you have a goal on your SPIL that is for community or individual advocacy, you do, and this CIL is going to advocate by empowering me to take ownership of my life.

   >>  It's a preposterous goal and doesn't make any sense.  This fixes the person that society is not appropriate for a CIL.

   >>  So when you look at the objective, create opportunities for economic productivity of people with disabilities, we all want that.  Okay, and the activity is to conduct 24 empowerment classes.  I don't know how empowering classes are going to create job opportunities for me.  I mean, if you can explain this.

   >>  I can explain it.

   >>  Yeah.

   >>  This particular one is geared up on funds, so fee for service which was going through M.R.S. they are saying productivity with people with disabilities, 24 classes at this because this is old but 24 classes were directed at M.R.S. class.

   >>  But, mark, how is giving me a class going to create an opportunity for my employment.

   >>  Sara:  Depends on the content of the class.

   >>  No, you are trying to change me and not change the employment environment.

   >>  That is not true because job training and how to write a resume.

   >>  That is not advocacy.

   >>  That is not all CILS are doing.

   >>  That is what they say here.

   >>  I'm sitting here and trying to look through what you are presenting and my heart goes out because I go out in the advocacy and there are times I had to do what you are doing and go to boards and say do you know what your system stinks or not including families in this or not doing this and I'm sitting here trying to I appreciate what you're doing but I want to identify what do you want, I'm hearing advocacy, I'm hearing including persons with disabilities in the process, if you could go down and list what you want it's going to help us a lot more to be able to identify with these things and then to share them with the CILS and to put things into practice.  Because that is the way I work.  Ever since my disability came on that side of the brain is taking over and I'm sitting here trying to visually feel for that so if you could do that for me I would appreciate it, tell me in a list form of what you are warning.

   >>  The first thing we got to do is be able to talk about this stuff.  You guys got really upset we asked you if you are people with disabilities and the IL will come ask you who here is a person with a significant disability.

   >>  So you want us to talk about it.

   >>  Talk about it.  We got to get this information out to the CILS and we have to write it into the SPIL, that's what we want.

   >>  And I just say that in this mess of papers I have there is a list of the original reference material that we started with.  We did not make this up.

   >>  You guys don't have to believe us.  You can go read it.

   >>  And we didn't make it up and you know, there are resources.  I would just encourage you all to go back to the original authors, writers, the people that were envisioning the centers for independent living and learn more about them.

   >>  Or get involved at the national level and learn from your peers in other states.

   >>  Sara:  Can I ask one final question?

Did somebody have a question, Robin?

   >>  Robin:  Well, I mean, I used to work at a CIL, I no longer do.  And while you're reading I remember sometimes when there were situations that mimic what you put.  I mean, I remember situations where certain things were padded, padded for the 704 or certain people were kind of the goal for them was sort of skewed so that we could get funding through them.  I mean, I've seen some of the issues that you brought up, but the way that you presented it today, I'm sorry, the way that you presented it today, makes it appear as if that is the whole of CILS, that is the whole and that is what is on the main part, it's what is happening.  And it certainly was not the lion share of what was going on.  I mean, I'll give it to you, I saw it, but it was years ago that I worked so I can't speak to what is going on there now.  A lot of things have changed.  A lot of staffing, a lot of everything has changed.  But so I give it to you that you are bringing forward problems that have legitimately existed but I also want to put out there that the brush that you painted with it's not all of what the picture is.

   >>  We can acknowledge that there may be CILs in Muskegon that are consumer controlled and who are doing the right thing but if you step back and look at this on the national level there are three problem states in America, Michigan, Indiana and Florida, they are not consumer controls.

   >>  Who is making that basis for the problem state?

   >>  This is just opinion, okay, but it's an opinion commonly shared at the national level.

   >>  Okay, good to know.

   >>  And there are hundreds of CILS doing the right thing in America and may be some right here in Michigan too but it's a problem and we got to name the problem and work to fix it, that is all we can do.

   >>  I think it's definitely it's vital to say there is this problem but I like to point out that it's not a fatal injury.

   >>  No, this is absolutely achievable.

   >>  Right.

   >>  We can do this.

   >>  It might be a wound from an old CIL but it's not something that is this gaping hole.

   >>  It's a big problem.

>> Depends on which side of the table you are on.

   >>  Exactly.

   >>  Sara:  We have about two minutes left then I have to wrap it up.

   >>  So I'm clear you want to talk about it, get the CILS and get out to CILS and hearing advocacy and people having a voice, am I hearing because when I think about that I think of leadership and I think of leadership training of how to tell your story in an appropriate way and so you can set the stage getting a message across so it's done in a way that people can come to a common ground.

   >>  Not like what we are doing.

   >>  Thank you.

   >>  And can I just say this in Michigan had one Federal audit in five years and that was Kent County and the problem they had is they did not have consumer control at the decision making level and before that auditor left they found somebody hired that they could move up.

   >>  In the process of hiring at the time the audit occurred so they lost their development person, Jocelyn who had a significant disability and when RSA was there they did not have anybody in the role.

   >>  That is what happens when you operate at a razor thin margin.

   >>  Razor.

   >>  One person is a razor thin.

   >>  Can we band together to get more resources then because we don't have resources to hire more people.

   >>  If you have 12 employees you don't need to have 7 people with disabilities you have 8.

   >>  You are saying more than 51.

   >>  That is the minimum and that is a C minus and I need an A.

   >>  I have to close comments after this.

   >>  I think I just want to take this to the 50,000 level, if we are talking about people with a disability and I have two children with a disability and one has passed, talking about empowering them in their community, we don't want them to just stay in their community.  I can tell you my son would never want to say, he doesn't want to have friends because they happen to be disabled.  He wants to have friends because they like this kind of music or they love fast cars or whatever.  You don't want to define them as disabled particularly in my opinion because we want to empower them to have a voice, we want to teach them how to have a voice but we want them to be empowered to come back and not be abrasive fashion but in the community among able bodied people and to me that is the best teaching as an able bodied person when I see someone who looks different than me, who functions different than me but they are just as happy to open the door for me as I am for them.  I mean those are priceless moments that we teach but we can use a CIL to teach people but it's like I just got a sense that the presentation I know you done mean it to be but it was kind of abrasive.

   >>  These are hard concepts, it's hard for us to address that we might have symptoms of ableism in our own spaces.

   >>  Ultimately the goal is it's not do we have 51% of this and 49% of this, I think the ultimate goal is we want to empower this community that has been disadvantaged forever and will never make it 100% but if we get to a place where they have confidence themselves to represent themselves as best they can and we are teaching and empowering them through CILS and other means then they are going back in the families and back in the communities and back in their jobs and they are the best representatives when we help them be the best they can be and I think that is the big picture we need to go after and that is about compassion and grace, not necessarily numbers.

   >>  Sara:  So.

   >>  The law is the law.

   >>  Sara:  I want to close the conversation.  I want to thank Eleanor and Darma for coming.

These are hard conversations that need to continue, okay. 

This is probably the most adversarial conversation we've had and it's okay.

   >>  It is okay.

   >>  It's absolutely okay to have this conversation.

   >>  We should not be the first people whoever asked you if you had a disability.

   >>  I would like to ask people to do one thing for me, just one thing, it will take 13 minutes.

   >>  We don't have 13 minutes.

   >>  Not now.

   >>  I want you to go to with ebb site ---website pure alliance and go to the resource page and go down to where the videos are and watch the 1991 Michigan event.  This is where Michigan was in 1991 in terms of consumers empowered political and visible.  Just watch it because I'm telling you that that video is -- it's everything CIL needs to be philosophically.

   >>  Sara:  Thank you, let's give ourselves a round of applause.  [Applause]

 Okay, so we've got to get through our reports.  We have an update on the My SILC staff and talk about recruitment process and we got one last public comment so ready?

Go.

 

Okay, do I have anybody here from the office of service on aging that wants to do their report?

Okay, do I have I have Mia, got it right this time, do you want to do your report, please?

   >>  Yes, I can run through it real quick the travel 120, 121 program and new staff because we have a new Counselor and a new administrative assistant we all visited in Marquette to the office up there in March and we didn't make referrals there but likely see that as some of the participants with supportive housing program we have here and just a quick run on our numbers.  In fiscal year 2014 we served 111 people with a 28% successful employment rate and only and 15% closer and this year in the year 2015 we have already served 88 people looking at a 27% successful employment rate.  And everything seems to be on track.

   >>  Sara:  Okay, anything more?

   >>  No, that is all.

   >>  Sara:  All right, so pat love is here from the department of education on behalf of Collette but she had to leave a little early so she is not going to do the report.  Cheryl, are you on the phone from LARA still?

Okay, the Michigan department of community health which is really the Department of Health and Human Services now but right now these are separated on our agenda, Cindy Kelly was sending Charlas and was not able to come and an update to me and merger of community health and services is the status of logo.

   >>  That is the current status.

   >>  That is the report I was told to give you thank you have a logo.  Did Kellie Boyd give the Michigan report to somebody to deliver or provide?

She had a written report and she had to leave, she is graduating with her MBA today from Michigan State so maybe she can put that in writing and get that to you guys.  Brian was not able to join us and you submitted a written report and do you have comments on that?

   >>  Nothing additional.

   >>  I will save these to the end of the day next time, you leave or don't want to say anything.  We don't have anybody from the housing authority.  And Denise stork-Phillips was unable to make it and defer to Charlas and Susan Howell anyway.

   >>  She felt she would have more on the merger.

   >>  So I'm going to circle back to the discipline Michigan reports and I asked Jim Whalen to give an update of progress happening on the Michigan youth leadership forum and many of us were at the committee of a whole meeting last night and the cliff notes version will be great for public record.

   >>  And I think, in fact, if you listen to what Lisa said earlier I think she encapsulated it, what is happening currently is that there are people, a number of folks around not only this table but around the State of Michigan and understand two things really clearly, one is we are getting older and we need a network of youth and a vehicle to allow for you to gain the skills of leadership and one of those things is something that is called a youth leadership forum and while we have lots of stuff that has leadership in it and youth in it the youth leadership forum has a format and it's 25 years old developed this California and passed and Michigan had one at one point and there are reasons why it doesn't but there are no reasons why it can't.  And there are a group of us who will work really diligently to make that happen again in the real near future.  And what it basically is a group of depending on how many delegates you have around 20-30 youth, I guess and some of them are students, students, and probably most of them are students, some of them may be youth who come together for a week on a college campus, the first part of the week is basically IL philosophy and history and identification with your own civil rights and the second part of the week or the second couple days of the week is how do you put together a policy and it's presenting to a leg legislative body and the end part of the week is community resource fair forum sort of thing and beyond that all of a good while around the country are developing alumni associations so you have that young group of advocates that are always sorely needed but really sorely needed now I think more than ever since we are entering a new era of what is considered transition and I would say we have to take every opportunity to educate kids about, kids, delegates, youth, whatever you want to call them or call us about transitional processes because now in our society people who don't understand about transition and don't understand about their identity and their purpose which is what this whole week is about have a real -- has a real disadvantage because time after time in your life now you're going to have to go back into that well and change and if you start somebody down that road when they are 16 or 17 look at that advantage that you provide, when I was 17, 428 years ago, well, give or take a year, you know, my parents came from a generation where you went up and got a job for 30 years or 28 years or whatever it was, one or two maybe, right, we need to educate kids who are leaders who understand that their leadership is transformative over several careers, several changes and that is what this youth leadership forum concept is about.  And so we are going to get it done so that is all.

I could talk forever and forever is that long now so.

   >>  This is something that was in the past and no longer, we need to start it up again?

   >>  It existed for about 12 years.

   >>  Miranda:  11.

   >>  Miranda is a graduate and do you want to talk about it a little bit.

   >>  I would just say this, I came to Michigan about a year ago and there are discussions around this table that I somewhat laugh about but not really and sometimes I hear discussion around the table and IL or disability land and feels to me compared to other states you argue about the flavor of your Champaign and I say that funny but it's not, there are places that the ball hasn't move near down the field and this is one where we could gain a lot as a state by figuring this out.

   >>  Sara:  Okay.

   >>  Bravo and Rodney you need to put the plug in for the data for I.L.

Rodney is staring in the data and yeah Michigan will be highlighted June 17th.

   >>  Sara and Steve are also.

   >>  I know but I'm giving Rodney credit.

   >>  Sara:  We may have a lot of improvements around consumer controlled arena but an area we have been very successful in has been the good outcome data systems outcome management systems and turning that into resources for the CILS so but I want to let you talk.

   >>  I was going to finish answering, this is Miranda about the question about what it is I attended the delegate and first year they are participants and I was a junior in high school and for me it was absolutely life changing and it was the first tune where an adult with a disability listened to me, gave me that control and that voice, exactly the consumer control that is part of it and I learned that I had a right in my life and that my special education teacher didn't get to decide what I got to do after high school because that is what was happening.  I was told I was going to go work at McDonalds or subway because that was available in my town and I didn't have a license and the reason I didn't get a license is I didn't have anybody to read me.  The state and I learned that was an accommodation and they had to and I could drive I just couldn't pass the test and transportation became available and other things did too and for students we have a Facebook page that is kind of our alumni group and a lot of students we talk to each other and have business cards and we can call somebody and say, hey, my school says this or I want a job here and running into this roadblock and so it's a great advocacy tool and we do get connected with our CILS and my CIL is tremendous help and my leadership plan and I use services from my CIL and now happen to work for them.

   >>  So the funding went away for this?

   >>  Miranda:  No.

   >>  Not exactly.

   >>  Sara:  The Michigan Council on facility concerns MCDC is that what it was?

   >>  Miranda:  Yes.

   >>  Sara:  Was a Governor Council and a state agency that had staff and funding and they used to be the lead on it and when they -- when the Governor abolished that Council then there was no staffing capacity for MYLF and it's been -- there has been an attempt for several well intended individuals to try to get it going but we need to really formalize a structure and get a plan.

   >>  We are in the process of doing it now.  We are in the process and today's presentation about consumer control sort of reiterates and having trainings around leadership training that way we have consumers who can advocate and who can be the voice at local CILS and we can be connected and be able to do it in a way that is going to be effective.

   >>  Miranda:  It's funded and doesn't receive state or Federal funding.

   >>  Sara:  It can receive grants.

   >>  Miranda:  We do have some money left over from Dow Chemical we wrote a grant for.

   >>  They do the funding differently state by state, right, and it's not a stated thing but several states have general assembly money, several states use written plans from their equivalent of M.R.S. and it's a variety of things.  One of the things that some states are moving toward especially Kansas has already done is that they make it their on 501 C 3 and therefore they are able to be a housing of funds so it doesn't become an add on for other organizations, right, it becomes their thing and so there is lots of configurations.

   >>  We are exploring as I asked the question earlier to Susan Howell if this were part of someone's transition plan through M.R.S. can that fund it and I think yesterday or the day before the discussion about BPSBP about the blind services if it were written into part of their plan it could be a funding option so you know those are things we are looking at now but the one thing that we really also need to look at and the presentation earlier sort of sparked my interest in it is you know those are only two populations and we also have youth with special healthcare needs that may want to attend that as well and be able to go back to have a voice for people with healthcare conditions.

   >>  Sara:  So I want to move the conversation along just to get the last few agenda items and try to end the meeting by 3:00 for certain so I think you will get a lot more information on MYLF as the plan comes together and we certainly have some great institutional knowledge and Miranda and Jim from other states and Lisa's commitment to youth and others commitment to youth so it's a cool thing coming together.

 

The next thing we need to tackle is just talk about recruitment process.  Dawn mentioned it to me that you know we have vacancies currently and vacancies coming up, and we created a recruitment process that we need to implement so I guess Rodney send Gabriella , Dawn and myself and we will schedule a time to look at and we need to analyze where the vacancies are, look at the regulations on what spots need to be filled, I don't remember which slot Connie filled do you remember?

   >>  Rodney:  Not the specifics spot.

   >>  Sara:  Specific spots need to be filled and keep our balance.

   >>  Disability I believe.

   >>  Sara:  That was the category that would be what we have to fill the slot with but it's about making analysis and looking at where we need to recruit, what types of skills and the background we recruit from then we also have several Council members that are their terms expire in December and not eligible to be reappointed so we need to look at that preemptively so as our goal was to fill the pipeline so that we had applications on file at the Governor's Office so as soon as we had a vacancy we had somebody that was ready to be appointed and that we have interviewed and that -- that will determine if they meet that criteria we are looking for and providing that recommendation to the Governor's Office is the desire of both the Governor's Office and of this Council.  So is there anything else that the recruitment committee would like to.

   >>  Do you think it's appropriate to send out that letter with the process that got approved, right?

   >>  Dawn:  They are sending it out again but before we send it we need to talk as a group of what area we need to fill so we are targeting categories and not sending it to people who do not meet the categories.

   >>  Sara:  Then the other item is the I don't want to get too complex in the issue because of the late time of the day but the My SILC as a Government for appointed organization we have a contract with the My SILC Corporation which is our 501 C 3 arm.  Our My SILC board was -- we had non-Governor appointed members on the My SILC board, as of a few weeks ago the only board member remaining on that board was Michael Hamm so he had the authority according to the bylaws to appoint additional members.  He appointed the executive committee of your current Council to that board and we met yesterday and are creating a transitional board to put together the new bylaws, new structure to bring back to you in September so that we -- the goal is eventually all of the Governor appointed members are the board.  Does that make sense?

That is the direction we have been heading.  So to explain that in a simple way.

   >>  Lots of states have that.

   >>  Sara:  26 states and are 501 C 3 and 25 states the boards were comprised of Governor appointed 18 board members and Michigan was the only one that wasn't about now we will be in alignment with the other states by September.

 

So the next thing on the agenda is other, agenda plans themes suggestions for future meetings so somebody mentioned a Council to me agency.

   >>  Michigan inter agency coordinating Council and serve early on.

   >>  What about the special education Council.

   >>  Advisory committee and they call it CAC.

   >>  Special education.

   >>  Is that Government appointed?

   >>  I couldn't tell you that.

   >>  I know there is a special education committee too.

   >>  Sara:  We will look at that and if it's the our goal would be the find the Governor, the Council for special education is created through executive order, again trying to learn more about other Councils, right?

And then Michigan interagency according to Council is the same thing, a Governor appointed Council created through executive order.

   >>  What about mental health?

That is another one.

   >>  Sara:  Mental health.

   >>  A mental health Council was created last year.

   >>  Sara:  Through the mental health and wellness commission.

   >>  That is another option.

   >>  Sara:  We don't meet again until September unless -- I guess I'm going to throw it out and not say why but there may be a need for a SPIL amendment so I'm not going to tell you why so because I'm not privileges to be able to tell you why yet but if there is a SPIL amendment they may require a special meeting so we will communicate a process for you and if we have to meet before September.

 

And other than that our next business meeting is scheduled for September, do we have the exact paper.

   >>  Sara September 11 so we are reaching the end of our agenda where we are going to do public comment again so members of the public who wish to speak will be called on by the chairperson, you will be allowed five minutes as an individual and five minutes if you are a designated representative of a group.  Either way whoever speaks the allowed five minutes, the public must address the Council and not utilize this time engaging in dialog with members of the Council and during breaks we will have the opportunity to meet and engage in such dialog members of the public are requested to refrain from repetitious comments during this portion over the agenda.  Okay so do I have anybody on the phone for public comment?

   >>  Yes.

   >>  Sara:  Okay.

   >>  Joe Harts.

   >>  Hi, Joe.

   >>  I'm starting to time you.

   >>  I'm sorry I didn't hear you.

   >>  You can go ahead.

   >>  Okay, first of all done tell anybody Darma Eleanor you brought tears to this advocates eyes.  This is what independent living is all about.  What it's also about ultimately advocacy.  And that is implementing our civil rights.  The nondiscrimination elements of the Americans with Disabilities Act and section 504 state that no person with disabilities may be excluded from or denied the benefits to programs, services and activities of any public entity, place of public accommodation or recipient of Federal funds.  And I'll tell you what consumer control is not, consumer control is not telling people that they cannot participate in board meetings.  It's not just being members of the board, everybody should be welcome, as a matter of fact our board certification states that.  But there seems to be a disconnect here because that doesn't happen here in front. And it also think about this, ladies and gentlemen, it took six months to get from the DSU in successful format the very board certification of the disability network.  Problem in consumer control, a problem in not having the consumer voice heard.  There is another thing being -- that I need to address.  Part of the new wheel is to have a transition to our community.  I don't hear that discussed.  I don't hear that discussed about or spelled about or anything else but it's kind of hard to have community transition and people in institutionalized settings when our communities are not fully acceptable and when our CILS are not fully accessible and DSUs are accessible and when they openly discriminate against the very people that they are supposed to serve.  Also, I noticed the reply zone situation.  That is a prohibition under the ADA and 504 and retaliation but I've heard no less than twice this month alone from advocates, paid advocates, people with disabilities, Joe I wish I could be like you and point out the elephant in the room and discrimination, I'm afraid to lose my job.  And I hear people say don't rock the boat.  Don't point out the polling places are inaccessible, that DHHS is totally inaccessible to every blind person let alone other people with other disabilities or that BSBP itself violates these rules and we do not each one scrap of paper in a timely manner in accessible format and don't point out that because, hey, these people give us money.  We don't want to rock the boat.  That's not advocacy, ladies and gentlemen.  That is not empowerment.  Then when I hear people who are non-disabled who are EDs to write the next bill, you know, it kind of makes me wonder.  There was some comment and it isn't just opinion because I lived in other states for years, Michigan has not always been this way or been this bad but I'll tell you what, we are known as a really bad, along with Indiana and Florida and we are down at zero with our so called vocational rehabilitation entities.  People need to do more than soul searching.  We talk about the data points and the data entry, well ladies and gentlemen Joel Harts is not a data point, I'm a human being, I'm a person with disabilities who totally identifies himself as sane.  And our data points are not very good when agencies and entities make them up.  I've supplied information about falsification of my records and related.

   >>  Sara:  Joe, your time is up.

   >>  For independent living.

   >>  Sara:  Your time is up, thank you.  Is there anybody else on the phone for public comment?

Is anybody in the room that would like to provide public comment?

   >> I would like to say although Michigan probably like every other state has its negatives, I've always been very proud to say that Michigan has the best track record and that we end Kate all of our children with disabilities through age 26 and that's a major plus, that is a feather in our cap.

   >>  Thanks.

   >>  Other states don't do that.

   >>  Thank you.  Okay, we reached the end of our agenda so we are adjourning.  I want to thank everybody for attending today, safe travels on your way home.

   >>  Do you need the motion?

   >>  No, if I didn't finish we would do a motion, have a good day and good weekend.

   (Meeting concludes at 3:00 p.m.)