DARRELL JONES: Well, I had a few thoughts that I wanted to put on the table this morning.

I hadn't planned this, but after some of the discussions yesterday, some of us had some conversations outside of the group, and it triggered some memories and some thoughts in me that I just wanted to share.

In the group that was, the first section down here yesterday, when Dave and Abbie were talking.

Darrell Christenson asked a question.

He said we've been hearing a lot kumbaya about how wonderful relationships are, but can we have a little bit of honesty and truth now?

I don't remember exactly how you phrased the question.

Is that the essence?

Okay, close enough.

Well, I think there are some things that we have kind of talked around.

Some of it may have been said in your breakout sessions that I wasn't in yesterday.

But truth in advertising I used to be a VR counselor a long time ago when dinosaurs a roamed the earth.

But I've been involved in independent living for over 30 years now.

So that's my home.

And in part of my involvement in independent living for a couple of years I was director of a supported employment program within an Independent Living Center and yesterday Abbie really brought back some memories about some of the relationships with VR counselors.

And even having worked in that system did not prepare me for the individuality of each counselor and how they approach working with their consumers.

There were counselors that were very easy to work with.

We could breeze through a process with them.

There were other counselors that were a nightmare from start to finish.

They would oppose everything.

It didn't matter what it was, how important, how insignificant.

There was just an adversarial relationship that would pop up.

One of the things that I think needs to be said explicitly about the relationships with not only VR and school districts, but the mental health agency, the DD council, all of those entities that we interface with that have so-called power and authority over our consumers, over us, not only as funders, but so many of us in independent living have come through those systems as clients, as patients, as residents.

So we start out with a power differential, and at some point we may have to address that with these systems.

And yesterday also triggered a memory in me of a time when we were working with the DD system.

And there was a psychologist who was very well trained in his behavioral strategies.

And he saw the whole world from that point of view.

That was his frame of reference.

Everything was behavioral strategies.

And we had been working with a young man for months and months with pre-vocational preparation, soft skills, getting him to the point where we could put him into a supported employment situation.

And after he had been there for a while, some of his behaviors began to surface.

And we were prepared to deal with it.

We had the job coach.

We had the view of his work skills.

We had the relationship with the employer, and the psychologist from the DD center inserted himself into the process and decided that to change this young man's behavior he needed to stay home from his job for three days.

So in essence, this young man was suspended from employment.

And we had conversation after conversation after conversation with the psychologist, and we finally reached a point where we knew that something had to shift.

There was a whole procedural thing in that system that had to be addressed and it was really not about that young man, it was about a world view that people have.

So we called a meeting of all the DD staff, the VR counselors, all the IL staff that were involved and we sat in a big hotel room with all these people around this big table.

There must have been 30 of us around that table.

And we started talking about procedures, processes, perspectives, the way that we each approached our jobs, and I knew at some point that that psychologist was going to have to be confronted publicly because he was not changing his behavior on a one-to-one basis.

Not that he needed to be humiliated.

That would have served no purpose except to make things impossible for us to deal with.

But there needed to be an impact, there needed to be an understanding that this young man was an adult.

He was employee.

He had a relationship with an employer.

He didn't need a cadre of psychologists, VR counselors, IL specialists traipsing through his life and following him around and making decisions for him.

This is why we exist as centers.

And I know that we keep saying this in so many venues, but yesterday we were hearing some of you ask for a formula.

Please tell us how to have this relationship, a relationship with our VR agency or our school districts or whatever is combative or it's just nonexistent.

We've been trying and we can't get there.

Sometimes there has to be some truth telling.

And with this power differential that happens between large agencies that have been given statutory authority based on traditions of decades, we're trying to change an entire view of the world.

And as the group, were so many of us, so many of our staffs, Executive Directors, our boards of directors have come through those systems, many of us are still viewed as children.

We're still viewed as clients.

We're still viewed as patients, as residents.

And at some point we have to step up and say I'm not a child.

I'm not your client.

I am an adult.

I am your peer.

And we have skills.

We have competencies, we have something to offer and here is what it is that we have to offer to you.

So those are my ramblings from yesterday's proceedings and Dave, you had something that you wanted to add.

DAVE HANCOX: I can certainly do that.

Just following up on Darrell's question, the question from that group yesterday, and I want to just make sure that everybody understands that the successes that I've been sharing about the relationship that we have with our IL VR collaboration, the relationship that Pennsylvania has been talking about and the Granite State CIL as well that you've been talking about is that we didn't always enjoy this level of relationship.

It wasn't always there.

You know, when I walked into MCIL 17 and a half years ago, those relationships were not in place.

They were still very, very combative and we understand, we understand very clearly where that comes from.

We understand that there is a history of animosity between IL and VR and it's unfortunate because largely we serve the same community.

You know, and I had the great privilege many years ago of working directly with and for Ed Roberts, so I learned a lot about the IL philosophy at the feet of the master, if you will.

You know, and I learned a lot of life lessons from Ed.

And one of the most important things that I learned from him was that the whole creation of the concept of independent living and the idea of peer mentorship, people with disabilities providing the guidance, support, education, opportunity for other people with disabilities while very, very intentful, it was never created with the intent of doing battle with VR.

It was created with the intent of providing a parallel service, a parallel opportunity, a complementary opportunity because what VR was able to bring to the table, their vocational focus, did not include independent living.

And yet recognized very, very early on that if somebody is going to have a successful employment opportunity or an employment experience, they have to have good IL skills and if someone is going to enjoy a truly interdependent life, a self-directed life in the community, then employment is a huge piece of that success, right? 

Just like recreation, just like self-determination, just like having friends, a social life, et cetera.

So they are very complementary.

And somehow as we move through this new relationship of trying to create that parallel, it became hostile and it became, animosity grew between, and I think and those of you who are in the room from VR, you challenge me if I'm wrong, but you know there was some perception on the VR side that, well, there is these wonderful little volunteer groups that are trying to, these people disabilities that are trying to exercise their rights and create a presence for themselves in the community and they are taking our money to do it and those of us on the IL side were saying, look, we have a legitimate purpose here.

We have a legitimate service to provide.

We are not just these wonderful little volunteer groups.

We actually had a VR director who described us as such in testimony in front of the legislature one time that the centers for independent living in Minnesota are these wonderful volunteer organizations.

So we had, and this animosity grew and it became very combative and we forgot along the way, we forgot that we're here to be complementary, to provide a parallel service to the same customers.

And as I said to the group yesterday, it's called history for a reason.

You know, I'm not suggesting that we should ignore, but at the same time we've got to grow beyond.

Remember what grandma said, right, we're all in this alone together.

You know, we have to find ways, and I think Darrell is absolutely right on this morning when she said, you know, there are occasions when we have to step up and present ourselves and say, look, we're adults here.

We're not your subordinates.

We're not here to be told what to do, but we're your partners.

We're here to provide a legitimate service and that's one of the things that we've been able to make work.

I see Abbie nodding her head and I appreciate that.

One of the things that we've been able to make work in Minnesota is that we've come to the table as equals.

We both have something very, very valuable to deliver and to offer to the shared customers that we provide services to.

So I mean, I know that it continues to be a challenge for many people in many states, but it really, I don't want to over simplify it, but it really starts with that conversation.

You have to sit down and have that conversation.

And it might take a little work to get everybody to the table.

It might take multiple opportunities or tries to get everybody to that table, but it's really, really worth the effort because in the end the payoff is for the customer, the person with the disability that we're both serving.

So am I, Richard I know wants to say something.

Please.

I'm rambling at this point.

RICHARD PETTY: I hadn't planned to say anything, but what both of you have said is so profound, I'd like to try to just take what both of you said just one step further.

You know, certainly we want to value deeply the folks like Abbie and the other folks from rehab with whom we have built good relationships.

More and more it probably will fall to us to be the adult in the room in some of the conversations when the kind of things that Darrell described happen to us.

And Darrell is right, since many of us have been clients of those systems, we start from a very different place and a more difficult place to work from when we're trying to resolve issues.

So one of the things I think that we at ILRU can do is post some information because there are a number of trainings on dealing with difficult people.

And that's an important step and it can be at the individual level in working with a counselor who is difficult.

It can be at the systems level and Dave has already given some good ideas about lobbying.

I don't think many of the resources that we would have would go all the way to lobbying.

I think that's something, a unique piece that those centers that have done lobbying can bring to this such as what Dave has described.

It may mean things like applying the RAIN conflict model and I don't have all the letters of the acronym, but we'll post that.

It's RAIN, it's conflict management and it comes out of mindfulness, and it's a way to respond and not react when find ourselves in difficult situations, so what this comes down to is being relationship management and it means that we have to attend to it because we find ourselves in the situation where others around us, perhaps as an example a counselor or someone with power and authority in another setting is not wanting to give that up and we have to be the ones to find the way around.

That's unfair, but that's what life is, and it just means that we're the ones who have to do it.

And there are techniques and approaches to do it.

We'll try to post some things, but you can also look around and find trainings and resources and folks that can mentor you on those kinds of things also.

DAVE HANCOX: And I also want to say one other thing.

I don't want anybody to walk away from these few days here together thinking that I have a Pollyannish view of the world.

I mean I understand, I mean when people ask me, I've been an advocate and ally for people with disabilities since I'm 12 years old.

In one form or another, and people always say to me, what was it that attracted you, why are you, was it a family member that had disabilities? 

Was it some particular experience in your life that really drew you to this profession or the work that you do? 

And while it's true I have an older brother with disabilities and I had a great aunt with disabilities when I was growing up, and I have other families with disabilities now, but what really drew me to this, I'm a kid of the 60's.

You know, what really drew me to this work and to the independent living movement, et cetera, is the context of social justice, of civil rights.

I mean, I know that that's what has drawn a lot of you to this as well.

So I'm not Pollyannish about the idea that we all have to get along, I am not going to sing the kumbaya song that Darrell talked about.

I understand it's been a struggle to get where we are today.

But where we are today is the result of a lot of hard work both in the civil rights context as well as relationship building, et cetera, that Richard talked about and there is a wonderful Far Side cartoon that I use in some of my trainings and I can see Richard laughing already, and the depiction on this Far Side cartoon is a family sitting around the table having dinner and standing next to them is the family dog.

And the family dog is pointing a gun at the owner and the caption reads:  Hey, bucko, I'm through begging.

And the point is, the point is, my friends, we don't have to beg anymore.
Darrell is right.

We're adults.

We don't have to beg anymore.

We don't have to subordinate ourselves anymore.

The other part of that is that we have the tools.

We have the knowledge, we have the laws on our side now that support the work that we do.

And there is that old saying in the business community about working smarter, not harder.

And that's what we need to do.

We need to bring things to the table that show the real value of our contribution and that level the playing field.

I mean, Richard mentioned the example of the fact that in Minnesota the Centers for Independent Living has a wonderful relationship with our state legislature.

And we've worked really hard to cultivate that.

But when I sit down with my VR director, she knows that.

It's not an intimidation factor.

Not in the least, but it levels the playing field, right? 

So it's those kinds of things, but the overall point that I wanted to get in, and I know I'm rambling again, is that we have to work on these relationships.

We can't just resign ourselves to the fact that, well, I'm just going to have a crumby my relationship with my VR in my state because it doesn't have to be that way.

You don't have to live that way.

And you have to make the decision not to live that way.

So, again, I'm rambling so I apologize.

DARRELL JONES: Thank you, Dave.

Thank you, everyone, to listening to our thoughts.

I think we are ready to move into our first session of the day.

JUDITH HOLT: Could we have our presenters come up.

I think you are already mic-ed, so come up now I would appreciate it.

And thank you, Darrell and Dave and Richard.

I appreciate that.

Good things to think about.

But also y'all took 15 minutes more than you were supposed to.
Not complaining 

Excuse me.

When the bosses are up there, I don't interrupt.

But we have a really fun, this is the person I need you to see.

You haven't met Cara yet.
Cara is the money person.

She's the auditor.

She understands all of that nitty gritty stuff and she's the one that you want to keep on your side, right? 

Positively.

Okay, thank you.

We're delighted Cara is here because we have a real financial person here.

All right? 

I work at a university and my theory about financial people is once a month they decide that they need to change a procedure, not that it's a problem, they just decide to change it.

So I try very hard.

My current financial person that I work with in grants and contracts, fortunately, is from Louisiana.

And so we were able to bond quite readily and I just, while we were here, had a contract that needed to be approved and I knew it was going to be a little bit complicated, so I wrote her a nice little note.

You know that relationship building.

At the end of the note I wrote Geaux Tigers.

That's how you say go in Louisiana.

So this morning we're talking about transitioning from grant funding to fees for services.

And I'd like you, if you would, we'll take a few questions after each of the presenters.

If you could just wait until one presenter is done or one program is done and then we'll take a few questions and move to the next one.

All right, Amy, are you starting out? 

AMY BECK: Cara and Amy are starting out.

JUDITH HOLT: It's the Cara and Amy show.

Great.

AMY BECK: Good morning, everyone.

ILRU asked each of our teams this morning to talk a little about our journey going from grant funding to fee-for-service.

So a few points that we want to lift up and Cara is going to interject to help me talk about some of our history.

We actually started the process of our first major step toward getting fee-for-service funding, a little bit before Cara joined us, but she got in on most of it.

But I just wanted to paint a picture for you, about the time when I knew this had to happen and I had a business manager who started to have some real trouble and I believe it was perhaps cognitively tied to his disability.

Things were starting to go a little late and things really came to ahead, imagine this, my board is sitting in our large meeting room.

It is our June 25th meeting to approve our budget for July 1.

Now, we have to, as a nonprofit in Pennsylvania, we have to have a budget adopted before the start of our year.

He doesn't have the budget ready.

He's in that much trouble cognitively.

He doesn't have a budget ready, and I knew that he was going to have to leave us and that happened over the next few months, but I remember that August when there was the opportunity to try to develop our sign language program and another CIL gave me a framework of how they ran theirs and I would write drafts and I would send it to Rick's predecessor, Tom.

Tom would send it back to me and there was this deadline coming and I knew, I felt the weight of the world on me.

And I remember kind of sneaking out of bed early that morning.

I'm sitting in my pajamas at the dining room table and typing these revisions and I'm crying because I knew that we had to change from our reliance on the way things had been.

And I knew we needed to change a lot of things, but at that very hard moment had never left me.

So our sign language interpreter referral service was what I was working on, and that was our first real fee-for-service venture.

We had done some site surveys for a fee, but that had been very limited.

So we were fortunate, and Rick had talked a little bit about this in a couple of our, yesterday, but we had, the community was really telling LVCIL and the VR that there is a broken system for getting sign language interpreters.

A hospital would need an interpreter.

They would call a 10 year old list with 20 names on it and whoever called the hospital got to come and interpret whether that person had insurance or was qualified but their name was on a list.

So with that feedback we did apply through VR for an innovation and expansion grant.

It was a one year grant, and the way it worked was we had a chance to develop a system, figure out the processes and during that time we would have a staff interpreter plus developing other interpreters and VR would have all of their needs met for interpreting or as many as possible through the grant.

CARA STEIDEL: I'm going to interject here and talking about the start up grants.

What a gift that is to have a start up grant to start a business.

That's like going to a bank, if you were going to start your own business, going to a bank and they are giving you money.

No interest.

They are giving you money.

So a startup grant is really, it sounds like this is the way most of our programs have started, observation has been all week, and a lot of it has been the ARRA money.

The ARRA money was developed out of the tank of the economy.

The only reason we all received that is because of all the errors in the economy that were made, but it sounds like the ARRA money has really developed many programs across the country.

What a gift to have a startup grant.

It's a great opportunity to get your feet wet, to get the ball rolling.

AMY BECK: Sometimes you don't predict things exactly right with starting a program, and we had the first person started on like January 4th.

He was going to be the program coordinator.

January 10th we started getting calls asking us for interpreters.

That is how badly the community needed the service.

We had not promoted it at all.

We were really not ready in many ways, but we had that staff interpreter and we had some other interpreters who had gone through training.

So we did start.

Part of what happened was that the program was so successful because there was so much community need we weren't really ready on all levels for that.

I think our leadership, I think financially I should have had a larger reserve because when you start a new program, and please listen to this point, if you are in a situation with a fee-for-service program and you are billing entities, large entities, you are not going to get paid by them in ten days, but our interpreters were expecting to be paid within 30 days, but a lot of the entities we started working with, hospitals, big law practices, they needed months to get us established.

So I sure should have had a better reserve because there were quite a few check runs where I was holding my breath, will we have enough money, could we hold this another day to pay the interpreter.

CARA STEIDEL: If you don't have one right now and you're starting to think about fee-for-service and even if you get that startup grant, you really want to start thinking about having a line of credit because that takes care of that situation.

As a nonprofit, it's difficult to get an adequate line of credit.

If you don't have one now, start to get one now even if you don't have a program or you're not thinking about fee-for-service.

It's just a backup to have.

You may never use it, you might not use it all year.

But, in this situation if we would have had that line of credit we would never have had that concern.

AMY BECK: It really helped me I have to say.

I actually at one point borrowed a few thousand dollars from our state association to make payroll and I'll never forget that.

We were able to pay it back in a few weeks, but the government at that time was slow sending monies out to the CILs.

And the amazing things that happened in our sign language program was that at the end of that first year, I knew that the program might not make it if I didn't have some more financial support.

And so I talked with Tom at OVR and I just laid out, we've gotten this far.

I think I need some more help and you don't normally have a chance to ask for more money, but for whatever stars aligned in the heavens, Tom said I'm going to look into it and I'm going to come back to you.

And the first year we got $100,000 to start the program and the second year we were able to receive $94,000.

So, again, OVR had all of their interpreting needs met through that time and we did some other things as far as supporting some clubs they had, but it also helped us to really get our feet firmly planted.

CARA STEIDEL: Another thing to think about, we would have never been considered for that second year money if we weren't providing quality work.

We were providing a quality service.

They saw the service was needed.

It was desperately needed in the community, but the only reason we were considered for that additional funding is that we provided quality work.

AMY BECK: So a little bit about, again, with transitioning to fee-for-service ventures, I talked about, in a couple of the groups, that to start our S2L youth transition services, we went through the process, big grant application, for a four year, 100,000-dollar a year grant from the Developmental Disabilities Council in Pennsylvania.

We applied.

A lot of work went into it and they rejected it.

But that Developmental Disabilities Council, they gave us the opportunity to get feedback.

If you can ever get feedback on any type of proposal you've written, please take it or ask for feedback.

Some places will not give you feedback, but the Developmental Disability Council does.

The wonderful project officers, Kathy Gotts, set up a time with me and they reviewed what they liked and didn't like.

They loved our proposal but there was one glitch.

We had used, instead of calling our summer program Real World Lehigh Valley, we had called it a summer camp.

There was one volunteer on that committee who had felt that camp, thinking like Jerry's kids, it was demeaning to people with disabilities.

He had been sent to a camp as a child.

Our proposal was kicked to the curb.

She pretty much said I want you to tweak these things and change that term.

Resubmit it in a year and a half or so and we did.

And that's when we were funded.

The original four year DDC grant that the developmental disabilities funds really gave us time and space to think it through what's out there.

I mean, Seth has been a champion of what's going on in the community, what's going on in the region.

What's going on in the state.

How can we learn more about transition, how do we get our name out there and get others in touch with us.

CARA STEIDEL: I'll interject here when you're developing a rate.

What Seth were doing and Joe was doing during this whole process of developing relationships and going out in the community and finding out what's going on in the community, they didn't know it, but they were doing the research that's required to develop a fee.

AMY BECK: So momentum started building from the consumers in the services, their families, they referred more and more people to us.

We continued to go to every outreach event and actually we still do, that we can get to.with each year we can see more of the needs of young adults.

Young adults and how they treated through the medical system.

Young adults and what's happening with them in every aspect of life.

So it gave us more and more food for thought and more and more things on our wish list, our dream list of what could happen.

The community definitely believed in us.

They could see what was happening with young adults and our services and part of what helped us from that was that the community would write letters of support for us as we applied for other things.

Don't be afraid to ask other programs that you work with, people who just know that you're a good employer or you run some great programs.

Ask them to write letters of support and then you in turn will be asked to do that for others.

And we write many letters of support for our peers.

We also continued to diversify Seth's position.

I just wanted to mention that he continued to grow and change, to respond to what was needed for young adults.

Okay, the starting of our Career Path program, as we've talked some about, this is just a recap, y'all heard me talk about our experience with some other vocational service providers that raised our eyebrows and that we, instead of coming from the perspective of can we train vocational coaches at other agencies, it was an a-ha moment.

We are so well suited to do this.

Who gets people with disabilities in employment better than a CIL? 

So I just felt you all will bring these same things to your programs.

You have that IL philosophy, that never ending IL philosophy behind you.

The person centered approach that I really feel you have, your CIL environment, we are people with disabilities at home working in the workplace.

We are there.
I think it did help us to have open communication with OVR, and I can't under estimate the impact or I can't emphasize enough that Rick has been willing for he and his staff to give us feedback and, you know, we really took that to heart.

You have to embrace monitoring visits.

They may be hard or having a meeting if there is a problem, but they are so important because you're going to take away from that and you're going to learn and make the change and there are times when Rick will call me up and say, listen, I've heard someone from your staff saying something in the community and I was a little concerned about that.

And I will look that through and we can process that.

And there have been times I called Rick and I'll say I'm not really sure what was happening for this family in your services.

We abide by the rules of confidentiality but we have heard and we have a chance to look and I think that has built trust.

That wasn't day one of our relationship, but I was just following up on what some of my colleagues were saying earlier.

I've made mistakes in my relationship with Rick where I've goofed up on something and he is he had to call me up.

Whip me upside the head or vice versa.

It's just part of life.

It's just part life and we have to keep focused on the fact that we ultimately are serving, the goal is our consumers with disabilities and their lives.

So how did we start our fee-for-service program such as Career Path? 

I wanted to lift up, such as our LIFE program.

That's our school-based service and Seth and I had visited I think five transition houses in Pennsylvania.

We had seen everything and we were ready.

I actually have a plaque in my office that says the Bethlehem Rotary Club, has awarded money to LVCIL to get a transition house.

And what we discovered was it wasn't the place, but it was what individualized services we could offer.

So we're really married to the idea of the transition house.

I wanted that transition house so bad I could taste it.

The community did not need another place.

They needed qualified people to work with wonderful young adults with disabilities to get them where they wanted to go.

I definitely wanted to lift up the right board member is really what started our LIFE services.

We had a special education attorney on our Board of Directors and she was aware of a situation in a school district and she mentioned that, you know, hey, I wanted to see that you might be able to do this.

I would definitely encourage you to find key board members who could be referral sources for you or help you grow.

She saw something in us and helped encourage us.

I do want to share that, you know, it's not always wine and roses in this developing services.

In our school-based services now we have things down to a formula if someone approaches us, what we are going to talk with them about, how much time we'll spend on that, but at the beginning, you know, there were several families talking with us possibly about, going into our second year, talking about how their young adult might come to us for all or a majority of the 180 day school year.

That's a very big consideration for an organization and for us and so Seth and I were so trusting, met with the parents many times, and then we started being there at the school district and the school district was not, knew us, liked our free S2L program.

They suddenly did not like us quite as much sitting down with them to talk about you may have to pay us to get out of a due process hearing.

We did not seek that out.

We were invited to come to the table.

So it was extremely awkward moment and I would say that Seth and I probably each spent about 40 hours meeting with the school district and the family and what the family ended up doing, the school district allocate dollars for this student for the next two years to go into a program at our building.

The parents took the money and took the child to another program.

So Seth and I learned, very important, we learned a lot through that and chalked it up to learning.

But now we know that we're never going to spend 40 hours.

We know that what we offer now and it's in print, we'll offer a planning meeting and we'll review things.

We'll meet with someone and do an intake and give them a tour, but we're not going to sit down being berrated by the school district anymore.

I also wanted to say that at the same time now, if I talk about waiver services, show me, do you know what I'm talking about if I talk about waivers for attendant care.

Every state uses that terminology or no? 

Anybody out there who doesn't know what I mean? 

So those are the pots of money that we as people with disabilities can tap into to pay for things we need in our lives.

So once we knew that we were getting our handle on providing services to young adults in fee-for-service, it made us feel more ready to work in the waivers and here is what happens.

In Pennsylvania when you do waiver services you're told this is how much will be paid per quarter hour of work that you do.

We were able to look at those rates, sit down with Cara, ask her to analyze this.

Are we able to provide this service for what is paid? 

CARA STEIDEL: And in some ways that's really an advantage because you don't have to create the rate.

Someone is already telling what you the rate is going to be.

It takes that part of the variable out of the calculation.

Which can be freeing in a sense because now you know what your goal is.

So when you are developing a program and developing a cost that will be incurred for that program 

You already know the rate they are going to pay you and know if it's sustainable right up front.

AMY BECK: I know we have less than ten minutes now in our segment.

Did I lose time because of Dave? 

I just wanted Cara to review a little bit on this document that's 

in your PowerPoints about how our organization changed.

How we changed over our past history.

That has your clicker? 

CARA STEIDEL: This is actually an actual slide that was presented to our board when we did our budget this year and the intent of this information was to show the board how we are changing as a CIL.

We're becoming less and less dependent, that's not a really good word, grant awards are becoming less of our budget than they once were.

That can be a really freeing experience because you're sort of, when you have a grant you're limited to what you can spend and how you spend it.

You cannot generate any surpluses.

That all goes back into that program.

You become fee-for-service it opens up a lot of options of what you can do with the unrestricted money.

But the intent was to show that 12 years ago our total funding was $322,000.

This year it's almost $2.4 million.
A significant portion of that is our fee-for-service funding.

It was zero 12 years ago.

Next year we expect it to be almost $1.3 million.

So as a CIL, we've exploded as far as staff required to provide those services, what our choices are, what we can do with the money that we generate.

So we are changing as a CIL.

Not to minimize our grant funding requirements, still very significant.

We do need those grants.

They allow us to do things that we wouldn't be able to do otherwise, but we are changing as a CIL.
And our opportunities have changed and have expanded because of our fee-for-service.
So 12 years ago our OVR funding was 200,000.

This year it's going to be about 207,000.

You can see the state doesn't have the money, it has not gone up with inflation.

It actually has gone down if you would do it on an economic basis, our funding from the state has actually gone down.

Still a significant portion of our funding, which we rely on heavily, but going again into the fee-for-service has given us a lot of options of what to do.

One of our biggest costs like in any social service organization, 
we were at 250,000 12 years ago and this year we'll be at $1.2 million in staff costs.

That staff is providing quality work which allows us to sell our service, which allows us to be paid, which allows us to generate income, allows us to generate unrestricted income, which allows us to expand other programs.

So it's a win-win, when you provide quality product and the community wants that product and you get paid for that product, it allows you to expand into other areas that there is a need, that you may not have been able to do if it were grant funded.

AMY BECK: Knowing I only have a few minutes left, just a few things I want to lift up to you.

How do we plan to support our operations? 

A word I don't have on the PowerPoint that I just want to tell you about is a word that we developed.

I heard that bro hug made it into the online dictionary today and we have our own word that we wanted to share with you and it's taking the word dream and the word practical and we call it dreamical.

We like to dream of what could happen for our consumers, but we have to be practical and grounded.

So how do we manage growth, the growth that we had? 

We intentionally are looking at smart growth.

I talked with some other folks there some other people cause sometimes you choose not to do a program because you can't handle it.

So we do many creative ways to get information and thoughts from our wonderful director team.

When hurricane Sandy hit us, our operation were closed for a week because we had no electric.

And many of our staff had no electric at home.

I had electric at my house and we spent an entire day on strategizing for growth with our management team at my house.

It was actually a great day.

We've talked about going back to my dining room again sometime.

CARA STEIDEL: We had that whole day together and it got us started, but we didn't complete it on that day.

In fact, we completed it weeks later when we were like: this kind of isn't working yet and it just was, we kept talking and kept talking until we really figured out what our organizational structure required for our new growth.

AMY BECK: And that was the mainframe.

Every one of our operations, what's going on in there, what do we need to do.

And really what that boiled down to was led us to strategic planning and some organizational revisions to make us leaner and meaner.

We always hold everything up against our mission.

I recommend that.

Our board had to transition because of our transition services, they had to step up and become more of a board that looks like an organization that we are now.

It's not just a place to come to have supper every other month and patting on the back and telling us we're doing a good job, but getting involved.

A couple of things I want to make sure we remark on, because of our growing fee-for-service programs, everything is changed, but in a wonderful way young adults being at our organization every day has changed us and made us better.

Now, change is not easy for everyone.

I still have staff today who are saying why did we have to grow? 

I liked it the way we were.

Why did we have to change? 

I would say that we don't attract as many staff who are afraid of change, but change scares people.

Our staff roles have changed and evolved.

My role has changed and evolved because I'm no longer writing the report for everything happening every quarter.

I have excellent directors that are doing that, I'm more charged to be in the community now and making sure that I provide the supports to each of our leaders in the organization.

You know I just want to encourage you, there is the list there of things you're going to look at as you grow.

Your clearances, your daily procedures I think I talked in most of the groups about you have to be ready for situation, you have to have plan A, plan B. and plan C.

If you have a young adult coming to you every Tuesday and Wednesday, you've got to be able to serve that young adult.

So I'm going to be given the hook.

I need to see if there is anything else on the last slide.

Those are just the critical things.

I'm not afraid of change.

Our board is not afraid of change.

We don't ever have anyone our agency that comes to me and say, we've always done it that way.

How many of us have heard that in organizations? 

I may not like to change, but sometimes you just have to and you have to look at what's best for the organization.

I cannot say enough that having Cara Seidel, is one reason why we have been successful.

Because Cara can help us to think like a nonprofit who gets for profit.

You know our belief that we could do something better, person centered approach, open communication, open door policy which we take very seriously.

Hire the right people.

If you ever want to talk to me about the kind of hiring process that I've used, I'd be happy to do sidebar with you or be contacted in the future about that.

If I hadn't hired Cara, Seth and Joe, we would definitely not be here today.

JUDITH HOLT: If you will remember, we are blaming any time problems on Dave.

Just so we're all straight about that.

And I think because I'd like to have time to hear the other presentations, and this was great, so much good information.

I think what I'll ask you to do is jot down your questions and at lunchtime when we're asking and answering questions or having a presentation, what I'm going to have you do, the panelists cannot eat and answer questions at the same time.

I think I'll have you save your questions for then so you'll have enough time.

They'll have enough time to respond.

One question, Amy, you used the term clearance.

What was that in reference to? 

AMY BECK: In reference to your employees having necessary clearances to work with young adults.

JUDITH HOLT: All right.

The background checks.

Okay.

All right, next up we have Granite State CIL.

PETER DARLING: Thank you.

I just wanted to take a moment to say Darrell, wow.

With your permission, I can't wait for this to come out and be posted online and if it's at all possible, I would seek your permission to use that at our next quarterly.

It was just, I mean through the years I've heard lots, but concise and just wow.

Thank you very, very, very much.

A couple of other things, I've done this for a long time and there was more emotion in there than I thought.

And I still love every day.

And I sort of hate the idea of burn out.

And lots of folks do burn out.

How I've sustained this I think is through what I would characterize as energy.

I always keep myself, if not in the room, after the room, connecting with someone who I know will give me energy.

It doesn't have to be about the topic.

It just has to be about energy, positive energy.

So find that person in your life.

It will work.

To that, I want you all to know that I really appreciate this opportunity.

I think we at Granite State know a lot about what we think we know a lot about.

But I'm always just, again, go to the energy theme.

I have learned much from many of you.

I've enjoyed sitting at the tables.

I've enjoyed fielding your questions, the follow-up after.

So, you know, use that energy but it's been a great group.

I really love your questions, your energy, but mostly your passion.

So it will work.

So move forward.

We knew we would be the second presentation and somehow we saw Amy's before we submitted ours.

So what I'm going to try to do is just in some ways provide a somewhat different perspective, some of it because we come from different perspectives, but some of it just to give you different points of view.

When we looked at the question, how did Granite State analyze the capacity to move beyond grant to contract for service, I think to me one of the things that I hope will come out in the financial piece, and I think it will, is there is a difference between moving from grant to fee-for-service and developing fee-for-service.

Fiscally, it's the same.

I think you need to unitize your cost.

You need to know what your costs are per hour or per product or per something, but that would exist either way, but it's important that you think about the process because we moved, many of us in the room, from grant to fee-for-service.

That's a little bit different process than going to an entity to establish a fee-for-service; again, fiscally I think you'll learn hopefully in this next session how to do that, but the process is different.

So please be aware of that.

When we looked at our experience, again, we came from a grant.

In the packet that's in your materials, one of the things we used was a thing called core elements.

As we developed and worked towards sustainability, and I said the other day, please always when you're in a grant be thinking about sustainability.

We took that opportunity to really break down those unique things, features and components and values in ways that we could then use that to articulate because it is about what the costs are, but it's also about what you're bringing to that entity that you want to pay.

We also, and I think Ken did a great job yesterday talking about the advisory group.

We found ourselves about, well, halfway through our grant and we realized, and this is an honesty, Ken would not be offended by this.

We brought something significant to the school for free.

They loved it, they still love it but there is a difference, a significant difference between free and paying for it.

Huge.
So that when you suddenly say, you know what, the grant ends next year and by God we're just all so excited, don't you want to keep going? 

And they say, (hesitation) yeah.

And you realize: why wasn't it as enthusiastic as it was before? 

We'll have to find a way.

What are we talking about for costs here? 

And I can't imagine that there is a school district in the United States that in the last five to ten years has not been struggling.

I mean, there is probably one somewhere, but Manchester was just on its heels at the time we needed to do this transition, truly on its heels, just costs and things.

That refugee situation that Ken just touched on really impacted them financially in ways that they had not anticipated and did not have an ability to address in the way that legally they needed to.

So their costs really sky rocketed.

So I'm just saying you've got to anticipate a lot going from that.

Suddenly you're asking an entity to pay for something.

Value is great, but, trust me, there is a real different mentality between getting something and paying for something.

We, organizationally, I think did have lots of experience, fortunately, with developing fee-for-service mentality.

We do so much waiver service, and again great example and explanation.

That comes to you much as a grant because you just get a rate and it has the quarterly.

So we were used to that idea.

One of the problems I want us all to know when you move to fee-for-service, waivers are a great example, but it will happen working with your VR or your school or any other funding source.

Is that once it's established and you go, (big sigh), that payer, that entity that's giving you that wants that to be the rate forever and ever.

You don't need to give raises because people do this for passion.

You don't have increased health care cost in a CIL, do you? 

Yes, that was an exaggerated, oh, my God, I think you do.

So I'm just saying that's something you also need not initially, but to anticipate moving forward.

Many fee-for-services, you can establish but they languish.

I also talked about capacity and my feeling is that everything that you do, you need to take the time to really analyze with your staff, not certainly alone.

What that means, what skills, what experience, what expertise did it take to provide that service and how might you in other ways apply it? 

Are there other entities, are there other ways, are there other systems that need that? 

And always be looking for it and ready to respond, and if you have your unit cost, whatever that is, that product, that hourly cost or whatever it is, I think you're much quicker to respond and therefore much more open to utilization.

In employment we've done a couple of things specifically around employment, occasionally we'll get a call from someone working in New Hampshire, workers' compensation, somebody returning to work, although though that field has changed dramatically there is still some of that that goes on.

And every once in a while we get a call that says can you help support someone that's trying to return to work? 

They have these needs and that's what we're used to doing, on site work facilitation.

So immediately I can say we certainly can.

You know, and here is our hourly charge.

So there I might have someone who is working exclusively with our VR partner in employment operations, just like your favorite guy, and I can look and say who has capacity to do this? 

It may be obvious or I may need to get three people in the room and say we have this opportunity, can anybody free up a couple of hours a day for the next three weeks? 

I can probably do that.

Okay.

So there we're filling that, because in fee-for-service, you have people who aren't grant funded.

You've got to work every day to fill that sort of billed service which is your cost.

Please be aware of that also.

In terms of transition services, prior to and during Earn and Learn, Maureen would often get a phone call because we were in the school for other reasons around employment, and they would say, Maureen, I don't know if you can help us, but we have this unique situation.

We have a young woman who, blah, blah, blah, isn't attending and can't do this or that or we really have somebody who just can't do this or that and could you people come up with some sort of proposal to address that.

And again, it's about having that capacity if we have the time, we know what the costs are, you're prepared to do it.

So I'm just talking here about anticipating and moving that forward.

Maureen, next one? 

I do the next one? 

Let's go back to breakfast.

No, that's where we talked.

What process did GSIL go through? 

Again, I think when we looked at the fee-for-service and moving from the grant, we had to look at all aspects and implications of operating that program and consider what that would be.

The board clearly needed to be fully, we never, and I'm sure this is true in the nonprofit world, we never accept a grant without it going through the board for approval.

So that's just a process that needs to be in place.

Our finance department is also involved in everything we do.

It's a very open and a very transparent operation where we're always talking about, here is a grant.

How would we cost it? 

We don't do that.

We certainly go to finance and ask if they would provide that information so we're not just guessing and potentially guessing wrong.

Those are the kinds of things I think that we'll learn more about in this next session and hopefully go forward.

In terms of staff roles and responsibilities, Maureen will cover.

MAUREEN O’DONNELL: I think the staff roles and responsibilities we really had to identify them.

We had to change a lot of the descriptions now that we had the core elements identified, we wanted to make sure we captured all of them.

So we had to make sure we had a point person that was going to each school, who was going to be doing the reports for VR in the school district, who was going to be facilitating the advisory group meetings.

My role changed.

I was before the vocational, more employment and I went into the educational services and we also added an IL coordinator position into the program.

The next, so what assets did GSIL bring to the table in establishing fee-for-service? 

I think the first thing is, and I know we talked about, Dave talked about the history, between Peter and I we have at least 30 years each of doing a fee-for-service through vocational rehabilitation.

So we know some of the conflicts that we've dealt with and how to really work with vocational rehabilitation and I think we also have experience in identifying our values.

I mean, really identifying our strong connection with the community, also our student driven approach as well as our high outcomes that we've had.

You know, we've always, we go to meetings and we make sure that we deliver the data a sheet for that.

So really listening to the schools and to VR on what data they really need.

So we give them a list of the credits the students have earned.

We give them the list of graduates, how many students returned back to school.

The other thing is, I think GSIL, another asset that we have, we're really good listeners and I think sometimes we don't listen, we really recognize the needs and the differences between the different entities so that when we're hearing them, we take that into consideration and we really value their input and we're not just taking their input and saying, we're right, you're wrong.

This is how, it's true partnership.

It's true collaboration.

So, for example, I think Ken mentioned it yesterday that there had to be many changes made and we are really listening to some of those changes.

For example, we started out with a ten week program for the first year.

And we listened to the school and said it just didn't fit with the school system, how do we make that fit? 

We changed it to 14 weeks.

The other thing is through our advisory group meetings, I think the school district, they really make a good commitment and they're vested in the program because we really listened to what they had.

For example, with the advisory group a few of the guidance counselors and administrators would say to us, you know what, the students aren't getting their ICT, their computer information technology class.

They're just not passing it at school.

Is there anything that you can do? 

And that's when we really developed the computer technology course because we were doing it already.

We already had the competencies.

We were doing the word, excel, PowerPoint, the whole Internet.

We did a history on the computer.

We talked about social media and how important that is in work so it's all related to work, but we really listened to what they had to say to us.

The other thing, I feel that it's all about collaboration and the relationships and Darrell I do commend you for your talk this morning because that's really what it is all about.

So I don't think that GSIL's role as an advocate really has changed, however, since we started the Earn and Learn program and the students really have developed some of those self-efficacy skills, some of those soft skills, and as I think Darrell and Lisa Hatz said yesterday, we treat everyone as an adult.

We treat them with the utmost respect so we're really empowering them and they really become their own best advocate.

So we're not doing a lot of that anymore.

Isn't that our goal here for our consumers to become their own advocates.

And I think our role hasn't changed all so much, but it gives me great pleasure to sit back and sit in one of those IEP meetings or one of those exit plan meetings and listen to a student say, I want to take these courses and this is why, so it's that whole informed choice.

They're saying I want to do this because I just found out this is the career 

I want to do and I need to take these courses or I tried out some of the online classes at GSIL and online classes work for me.

Or let me set up my schedule a little different.

I work better at this time or this other time.

So it's really, they're advocating for themselves.

Are there times that we advocate? 

Absolutely.

I don't think that ever goes away.

The other thing is I think our biggest weakness is really not having the student individualize 100 percent of their plan.

As I mentioned yesterday, we have those seven ELO's, so those are pretty much fixed ELO's so we're not looking at them, their transcript and saying these are the exact classes.

I think we're capturing a lot of that, but that's something that we struggle with sometimes in making sure that we really try individualize each plan.

However, with the group instruction, self-advocacy really works because they work in a group.

They are together.

They are feeding off of one another.

So, again, we continue our role as an advocate, but it's really great to see the students become their own advocate.

And I think I'll pass it over to Dave? 

JUDITH HOLT: Yes, to Dave.

And I just want to be sure Dave understands the pressure he's under.

Since he wandered a little bit.

DAVE HANCOX: I want you to know that sacrifice is no stranger in my life.

JUDITH HOLT: I had this really good one liner, so Dave is the only thing standing between you and a break. I actually 

DAVE HANCOX: Can you see the beads of sweat? 

JUDITH HOLT: No, no hair, that's for sure.

I asked Dave before the training started if it was okay if I could kided him a little bit and he said he would get even with me and he's done very well.

However, this is the one liner I have to say here.

Charlie, one of our participants from Connecticut suggested a really good book you might want to use with your staff and you might already be using is called Who Moved My Cheese? 

And so Who Moved Dave's Cheese so we can get out.

I thought it was a good line.

DAVE HANCOX: I love my cheese.

Let me tell you.

Before I jump into my slides here, I want to do a little sidebar because I think, this part of the session we're all talking about moving to fee-for-service.

And I'm anticipating that there is probably varying states of readiness for that here in the room.

Some of us have made that successful transition to fee-for-service, some others perhaps have not and if you're contemplating that or if you're in the middle of that transition or whatever, I thought it might be helpful to take a little sidebar here just for a moment and cover a couple of assumptions that I'd like to put out there for your consideration.

I don't expect you to necessarily agree with them, but to kind of think about.

If you have not, if you're in the process of thinking about moving more to fee-for-service or you've already started the process and you're kind of in the middle of it and you're questioning it or whatever, think about these couple of assumptions as you're doing this.

This is what we went through a couple of years ago.

First of all, you have to accept and acknowledge the fact that you're a business.

You know, I've sat on, well, even right now I sit on 12 different boards that are all nonprofit organizational boards.

And many of them are arts organizations, and some of my fellow board members get upset with me because I refer to the organizations, we're a business.

Well, no, David, we're an arts organization.

Yeah, you're in the business of delivering a particular artistic opportunity or experience to your customers, but make no mistake about it, you are a business.

And, you know, if you haven't wrapped your mind around that yet or if you find that to be distasteful, find a way to come to grips with that because as you move to fee-for- service, those elements of business acumen are going to be demanded of you more and more and more.

So think about that.

You're a business.

Number two, even those of us who have been the highlights this week, we have presented various sizes of our organizations.

And one of the things that I ask my board on a regular basis as we're looking at expanding our existing programs or adding new programs is I always return to the question of how big is big enough? 

I was having a conversation with Daryll this morning and you know they have a very large PCA program and they use some of the net revenues that are generated from that to support other programs.

And that's great. That's great.

It's a wonderful way to support your core services and expand and grow them.

But you have to ask yourself how big is big enough? 

Okay.

The other one is doing fee-for-service as I just mentioned is a wonderful way to generate the means for additional growth.

So it's a means to an end sometimes.

And that it does provide you with the opportunity of a mixed revenue stream.

And that's about survival.

You know, you can't, you have to have that mixed revenue stream.

You can't put all your eggs in one basket.

It just creates too much of a risk.

Anyway, that being said, those assumptions what planning process did MCIL go through? 

We did a pretty thorough examination of the gaps in transition services.

We, the early identification as youth transition as an emerging issue.

We were identifying the need for transition services for youth with disabilities way back in the late 80's and I know other people were doing that as well, but identifying that as an emerging issue really early on and tagging it as a priority.

Okay? 

The exploitation of long term relationships with the Minnesota Department of Education, independent school districts and the University of Minnesota.

We had those established relationships, and when we made that commitment to move more into transition services for youth with disabilities to prioritize that, we didn't start from scratch.

We thought, okay, what relationships do we already have in place that can help us in developing a stronger foundation of those transition services? 

And obviously there was that organizational commitment to preparing the next generation for leadership and participatory roles in the community.

You know, a big part of our transition focus is not just serving that student during those transitional years, but preparing them for life after high school.

Preparing them for that adult life, and the idea of I'm not always going to be the ED at MCIL.

I'm not always going to be in that leadership role.

That torch has to be passed to the next generation at some point.

And we're seeing that across the country now.

We're seeing a lot of centers for independent living that are going through leadership change because we're aging out.

I'm old.

You know, I want to retire someday, and you have to be prepared to pass this torch to the next generation.

And I always think about my sister, my younger sister who still lives in Pennsylvania.

She went through the partners in policy making program there a few years ago and I was so glad she did because as she was bringing her children, when her children were really young, when she was first introducing them to the school districts and she has two daughters with significant disabilities, and she was finding all of these, what she thought were wonderful opportunities and services in the school districts.

What she didn't realize was they weren't always there.

She wasn't aware of the history that parents in the 60's and 70's went through to help establish those school-based services and community-based services and the struggles and the challenge, et cetera.

She wasn't aware of that preparatory process that had taken place and that's exactly the same frame of mind that I think of with transition services for youth with disabilities is they have to have a context of that history.

They have to know where we came from.

Right? 

In order to successfully move us to those next stages.

So there was that organizational commitment to preparing that next generation.

How do we move from grant to fee-for-service model? 

Again, those long term relationships that we had built with the Department of Education and with specific Minnesota independent school districts, we exploited those relationships.

We used those and we moved them to the next step.

You know, we worked with the Department of Education to get some grants early on that allowed us to develop some core curriculum materials on self-advocacy skills, and interpersonal skills development and then we took those materials to those independent school districts where we had relationships established already and we used those as an additional entry, something to put on the table that we could offer them rather than just our goodwill.

We had a product to sell. To market.

The addition of transition services to our core service mix with the state funding support, I talked about this two days ago in our general overview that in 1994 we were able, the state association of centers for independent living were able to add small amount of money.

It wasn't huge, but it was that seed money that we were able to add that to our core service mix with a specific target of transition services and that really helped us get some initial things off the ground.

And then the demonstration of MCIL's value through this special grants collaboration, the presentation of student survey day and creation of the supportive curriculum I mentioned a moment ago.

What asset did we bring that make our change to fee-for-service possible? 

Well, qualified staff.

I've always been very good about taking the time to hire the right staff, not just the right now staff.

I don't hire somebody just to get the position filled.

I'll take my time to fill the position to make sure I get the right person.

Somebody else here today talked about having the right people on the bus and making sure they were in the right seat on the bus.

So we really spend a lot of time doing that.

We also approach our relationships with a nonthreatening attitude.

For example, we consistently present ourselves as a resource or an asset.

We don't suggest that we're as an outside entity that we're coming in to judge or change their program.

Not coming in to tell them what they're doing wrong, but to be a resource or asset or add something of value to the community that they already have in place.

And I think Abbie would agree that that's something we wrought to the IL VR collaboration as well just like we do with the school districts.

We provide flexibility.

We'll work within their schedule.

We'll get people there on a regular basis.

Our access to national resources is another gift that we bring and put on the table.

Not all of the other folks that are contracting with the school districts necessarily have that.

You know, other individuals who are providing contract services to the school district don't necessarily have a national connection like ILRU or NCIL or something like that that we can tap into on a regular basis and bring those resources to the table as well.

They are fantastic additional gifts that we can bring.

And ability to demonstrate that we are value added and indispensable.

If you present your product in the right way and you implicate that product into their environment, into their community in a successful way, that over a period of time that program, that service is going to be seen as indispensable.

I kind of think of it as an orchestra or a band.

If you're sitting listening to that orchestra and that band and all of a sudden one instrument is gone, will you miss it? 

Probably.

And that's how we think about our services as part of that orchestra in that school district or in the workforce center.

It's part of that orchestra and if that instrument is taken out, it's going to be missed.

How does MCIL stay in the role of advocate? 

Well, we consistently represent, consistent representation of the consumer and his or her interests.

That's the whole idea of our advocacy piece.

And sometimes we even have to explain to the parents that we're not their advocate.

That we're there for the student.

Now, again, as much as possible we try to do that in a noncombative way.

We'll work with the parents to build that collaboration and to build that consensus, but make no mistake about it, we're there for the student.

That's our client and I hate the use of that word, but that's who we're there to represent.

Consistently demonstrating the IL philosophy through our person centered approach.

And the next one, in the same way, assuring in gentle reminders that all discussion and decisions include the consumer and/or his or her opinion.

The adage, nothing about us without us and consistently in those IEP meetings turning to the student and saying, what do you think? 

What is your opinion? 

What would you like to do? 

I used to work with a gentleman, unfortunately he's now deceased, but he was a wonderful advocate and ally to the disability community.

His name was Hank Bersony, some of you may have known Hank. A wonderful guy.

And he told me one time years and years and years ago, he said the first phrase that a child with a disability should be taught to say, even before they say mama or dada or anything like that when they are first learning their speech, the first phrases they should be taught to say is I like, I don't like, I want, I don't want.

Because typically throughout their lives nobody will ask so we have to teach them early on and that's the whole point about this nothing about us without us.

We have to constantly remind the parents, school districts and others nothing about us without us.

What does the student want? 

Have you asked the student? 

Or if we're present, that's our role is to say, well, what would you like to do? 

What do you think about this idea? 

A story that I tell about my God daughter when we were sitting in an IEP meeting years and years ago, and we were going around, sitting next to mom and assembled around the table was the IEP team.

Teachers, school administrators, special education teacher, et cetera.

And as we're slowly going around one person at a time around the room we're being told over and over again, in my classroom she doesn't do this very well, she can't do that.

In my class she doesn't do this very well either or she really has a challenge with this.

I finally leaned over and nudged my friend and said who are they talking about? 

You know, that's not the daughter that I know.

That's not my God daughter.

She said I know it's very disturbing to me, too.

I said you have to put a stop to this.

You know, this is your meeting.

So she raised her hand and said, you know, you have my daughter six hours a day.

She's here in your classroom six hours a day.

Where do you think she is the other 18 hours of the day.

She's at home with us.

Don't you think we know that she has challenges? 

Don't you think we know that there are difficult situations for her? 

We know that.

We also trust that you're the professionals in the educational field.

You know how to meet those challenges.

So moving forward, she said, from now on, moving forward, no more negatives.

I want each one of you, we're going to start over again and each one of you I want to hear you say something positive about my daughter.

They were stunned.

But you could see the wheels starting to turn and they started to talk and whispering to each other.

Add finally the art teacher said, you know, in my art class she loves tactical stuff.

She loves the paper machete.

She loves getting in there and getting her hands gooey and the 
geography teacher, the social studies teacher said in my class she's really good with maps.

She can read a map like nobody's business.

Topography and that, just fantastic.

The next thing you know there is a conversation taking place between the art teacher and the geography teacher and they are coming up with this idea for extra credit where she can use paper machete to make a couple of topographical maps.

This is for extra credit.

Changed the whole thing.

Nothing about us without us.

Ask the student what they like.

Right? And I'm done.

Look, Judith, I'm done.

With about 20 seconds to spare.

JUDITH HOLT: And who says that miracles can't happen? 

And I love the bow.

DAVE HANCOX: I always bow to greatness, dear.