AMINA KRUCK:  We're going to kind of go back over any questions that were lingering from yesterday that you might have. 

We looked at the sticky pads that you guys turned in, the sticky notes. 

And there was one that I had a question about that maybe someone could help me with. 

It said would you recommend presenting to parent support groups and use the internal resources they use in their communities? 

So is the person that wrote that here that could explain more what you are wanting me and us to address? 

It was the CART person? 

Oh, okay.

Yeah. 

Get the microphone. 

Oh, good, you remembered. 

We have to get back in the habit, right? 

AUDIENCE MEMBER: Hi, yeah, I was the one who asked that question. 

It was regarding considering in our organization in terms of creating this program, and outreaching to our current support groups to build awareness for the peer mentor.

We have a parent support group that meets once a month so that question was aimed at that working with the parents, maybe finding interests in that.

Basically, just looking towards our current support groups and making presentations.

AMINA KRUCK:  And are they parents of adults or parents of children or both?

AUDIENCE MEMBER: I believe both.

And what I understand the parent support groups they already have current resources in some of our cities that they organize around.

Maybe like support groups.

And they attend our center once a month as well.

So I think there's potential in reaching out within, like, the communities.

AMINA KRUCK:  That will help get you referrals.

And I think that when you, so always you want to use the resources that you have.

Both to advertise your program from both sides, the mentor, mentee side. 

And you'll have to make some decisions if parents want to mentor other parents. 

I just would recommend you finding out what your Parent Training and Education Center is.

Because all states have them.

And that is really part of their job for parents.

But, like, Raising Special Kids, you can hear it, right?

When we heard him name it.

Special.

It used to be called Pilot Parents. 

We were, you know, we're friends, but there's this typical thing between adults with disabilities and parents of children with disabilities that goes on.

I see a couple nods.

Anybody else know what I'm talking about.

The kind of conflict that's in there?

I was a child of parents with a mental health disability.

I grew up with a chronic health issue.

I have a daughter with a learning disability.

So I have empathy for all sides about it.

But so you want to see what they're doing and how you can enhance what each other's doing and not necessarily try to replace it. 

So that's one thing I'd say because Raising Special Kids in our state mostly is supporting parents with children at the children age.

And not the adult age.

And, as we've heard from the mom here, there is need for parent to parent support.

So that's what I'd say about that.

Tell me again your nameand where you're from.

AUDIENCE MEMBER: My name is Arturo Navarras. 

I'm from Southern California Resource Services.

AMINA KRUCK:  Thanks.

That's going to help me remember if I hear it repeatedly, thank you, Arturo. 

Get the mic for you, yeah.

And you're from Tennessee, right?

AUDIENCE MEMBER: Yes.
I'm Steven.

AMINA KRUCK:  You didn't get to introduce yourself yesterday so tell everybody who you are.

AUDIENCE MEMBER:   I'm Steven Growikie.

I'm with the Center for Independent Living Middle Tennessee.

I was just going to say there was a question yesterday about that was similar to this about how to connect with school systems and also parents of children with disabilities. 

And you definitely need to connect with your Parent Training and Information Center in your state.

There's a Web site that you can go to identify who's the Parent Training and Information Center for your area. 

AMINA KRUCK:  Give them a second to get their pens.

He's going to help you.

Thank you, Steven.

No problem.

Everyone ready?

Okay.

AMINA KRUCK:  Almost ready now?

They're ready.

Almost ready, okay.

AUDIENCE MEMBER: All right.

It's parentcenterhub.org.

And you simply click on your state and there may be, there may be more than one Parent and Training Information Center for your state. 

And there's also a Community Parent Resource Centers, CPRCs that serve a smaller area.

They may not serve the entire state.

They may serve a county or a couple counties so you can see which one that you need to connect with depending on what area you're in.

And they can help connect you to support groups with parents.

And also help you make those contacts within the school system.

AMINA KRUCK:  Thank you.

Fabulous.

Okay.

Here's one regarding staff training on the subject, would an LCSW, which is a licensed social work be a good resource to use at our center in terms of presentations, et cetera, also to help understand mandated reporting?

That's absolutely true.

I have a masters in counseling from the counselor education department at ASU.

What's her name, April, April. (Laughter) Sorry.

My brain just went totally.

Need more coffee.

AMINA KRUCK:  Where am I?

What city is this?

April and then another one of my staff members that runs the This Is My Life outreach self-advocacy to DD folks have MSWs, Masters of Social Work.

And we often notice what's different because they are on the button about these kind of mandated reporting and boundary issues in a way at least, you know, 30 years ago when I got my counseling degree they were not.

They are much more now.

Counseling has changed a lot in the last 30 years about accountability and that kind of thing.

There was some really not so okay things going on with poor boundaries back in the day when I got trained.

Of course, I'm an Big Sur girl so what can I say.

I grew up in the San Francisco Bay area.

I won't say any more.

So I know what not to do.

But she knows what to do.

And so she's really helped firm up that piece of the program for accountability and safety issues.

So I learned that it is really helpful to have Somebody with a master's degree and particularly a licensed social worker type of a thing.

But you don't have to have it.

But it, they certainly had a training that I didn't have that brought to the program more things that will help your board feel safe and it really, what I've observed is it really does make the mentors feel safe.

And more available.

And just like here, how we have the sticky pads for the quiet people, that's true of your mentors.

You know, they're across the board, too.

There are flashy ones and extroverted ones and there are introverted ones that are still motivated to be and are good peer mentors.

And so you know, they, we try to bring up everything we think they're thinking about and not bringing up when we do the trainings.

And then when we do the ongoing groups.

Any other questions about that?

I think we answered a lot of these.

One thing we didn't talk about was were we working with people who had guardianships and how to deal with families.

And if families are involved.

And you know, I've already talked about somebody who was living in an unsafe family situation.

And I have a long-time friend who is quadriplegic and she got her injury when she was 18 driving in a van after a party with her teacher drunk driver.

And her family took good care of her.

But they hovered and protected.

And that's how they were as a family, okay?

It wasn't just because she had the disability.

It was kind of the nature of the family.

It was a military family.

Their dad had been in the military.

So one of her heart's desires is to talk to parents about what their newly injured teenagers need to help them through that transition and into adulthood and that was one of the videos I was brewing up on the plane coming here the other day.

So families have to be taken into consideration if they're involved.

So definitely, we try to have the mentor not be the one to deal with the families but the staff. 

Remember that person that's getting mentoring has a staff person that's working with them. 

And that's part of their goals is to work with the parents for the most part, wouldn't you say? 

APRIL REED:  Well yeah, I think so.

And occasionally, you know, we might have a family we know they're really supportive and they understand you know, how to be there for their child.

And so I remember a match where we knew that it was going to be hard for the mentee to remember that they were meeting and to schedule paratransit.

And so the mentor would call and talk to the mentee about meeting and then the mentee said now let me get my mom before we hang up so then they would give the information about the meeting and the mom would help arrange transportation.

So as long as the mentor knows the boundaries there up front and understands a little bit about the dynamics of the family, you know, we usually can navigate that pretty well.

APRIL REED:  And, you know, even I went into a meeting with a staff person a couple months ago and the mom and dad were there and they didn't even have the individual with them. 

AMINA KRUCK:  Yeah, we had that for benefits counseling, too.

APRIL REED:  I really did get grilled about who are these people and what's their background?

And I totally got that.

And by the time we left, they both kind of went (big sigh) okay. 

And so then I kind of was able to explain this is going to be independent, your daughter will meet with the mentor one-on-one.

And then we were kind of able to get them a little bit excited about it.

AMINA KRUCK:  Safety as opposed to risk is a parent's primary job even though we know that risk was important and that's what we so try to convince everybody of in our movement and the ability to fail.

But again I think all those guidelines we have and things we can just produce and show them what our boundaries are is very helpful to them.

Because that's their role.

That is their role.

Any other comments or thoughts about that or experiences people had?

Thank you.

AUDIENCE MEMBER:  I have a question.

Do you get written permission from the guardian?

AMINA KRUCK:  Yeah, they have to sign something, absolutely.

APRIL REED:  On our application form you'll see at the bottom there's a place where the guardian has to give a signature.

AMINA KRUCK:  And even if the guardian signs it, so does the consumer.

APRIL REED:  Yes, they both sign it.

AMINA KRUCK:  So we treat it as a partnership from the get-go.

Oh, what do you do to keep them coming back?

So somebody else mentioned food.

Food.

So April keeps them well fed.

She has an in at Wal-Mart and she's always got plenty of food. 

We never worry about food.

In fact for their Christmas celebration, the year they didn't have the grant, it was ridiculous.

To make up from something exciting, you know, they had a lot of food.

So food is not an issue and now what's so cool is we've got these, a couple chefs that are involved in the program and they get everybody involved in bringing, like, the soc rec program they decide as a group what they want to be doing for the cooking class.

And he helps work out the menu and they bring pieces of it, the tomato sauce or the bread or pasta.

They all bring parts of that meal to put it together.

So but also, you know, April mentioned in just passing cards.

And how many people here are the kind of people who like to get cards in the mail?

So a fair amount of people.

Some people don't care.

A few latecomers.

How many people here are card senders?

So what I'm noticing is there's a few more card senders than people who admitted they like to get cards.

But they're kind of mostly the same people.

People like to get cards.

To them it means you took a minute.

And an email is nice, a phone call is very nice.

And a card is really nice.

And April gets a lot of cards.

And she was buying them on her own until I found out she was doing it and hopefully she's using more ABIL cards now.

But that kind of courtesy thing when you notice something, and I'll tell you one of the big things that helped me move in to leadership in this movement was I was responsible for the bridge and I do a lot of writing for the newsletter or putting together articles, is every month I used to get a copy of an article I'd write from Justin Dart with a note on it to me.

I can't even tell you.

I still get, yes, body chills and choked up.

For one thing, I've had friends who don't read my articles in the newsletter.

I remember when Medicare Part D was coming out, I, for months I wrote articles.

And one day I was talking to my friend and she, this is a really good friend, not just a little friend.

And she said oh, I don't know what's going on with that.

And I'm like havn't you been reading my articles?

No.

So the only time I know people read my articles is when I misspell things and it gets somehow out through the editor.

You know, you never know when you're doing stuff like that.

But that note, and Yoshiko still sends me notes periodically with just a little signature, a little love note.

So you can't imagine, like, someone, so when April said she noticed that, is he, Steve or somebody had done a really neat thing and pointed it out to them.

When you're in school, how many of you got things written in red about what you did right?

Anybody?

I did.

This is why I think to ask it.

I had a teacher that did that.

99.999% of the time we don't see in red what we do right.

So sometimes we don't even know what we're doing well.

A lot of times people, when I interview people, they don't know how to talk about not bragging but just simply what are you good at?

They don't know that.

So that is a very good ego booster and empowering thing to do for people.

AUDIENCE MEMBER:  Sometimes it's just giving permission that I found out.

In college, in a class, a teacher expected everybody in the class to write a note to every student in the class something about that they learned about them.

And then when I was a director, I gave my staff permission, which they thought in the beginning was crazy, to send out cards to everybody who supported anybody at any level of the people we had working at this company.

And that was so infectious that a lot of our folks suddenly they said oh, I have permission.

And so it's sometimes doing that just gives permission to people to do what they would probably normally do.

AMINA KRUCK:  Yeah, or you find out they're doing it on the side and not telling you.

Teri, Teri is one of those.

She's always sending little notes out to her people.

She does benefits counseling and actually still likes doing it after five years.

She's a ticket user herself and it's a passion for her to give this gift to somebody.

And she was doing it.

And was doing it on the side, you know?

And so yes.

Giving people permission, letting your staff know.

And doing that for the mentors means a lot because they don't have to be there.

And April is always really aware of that and so she's saying things, she's making calls here and there.

She does a lot of personal work that some volunteer coordinators would not do.

And that's why we have such a solid team.

Who now is working together like a team in a way we didn't try to get going.

They have come that way because she's role modeled to them and they treat each other that way now too.

So that's, if you don't have to have a lot of money.

And they're thrilled with a little 5 or 10-dollar gift certificate.

So you know, in the years we don't have money, they get something little.

But we do some kind of recognition.

For years we dreamed about having the spirit of ABIL.

Then we had it and we would invite staff and everything and have a big thing.

Then when the recession hit, we couldn't afford to do that so we had to more just invite the people who were getting awards and their support people in our, so our board took over running that.

And so it was like a board event.

But like my staff, they're thrilled if they get to be picked as the one staff that gets to come to that.

And, but then we you know take pictures and we put it in our newsletter.

And stuff about, you know, what they did.

How many hours of volunteering they did or a story about what they've done or their mentor match and like this year we decided to actually highlight the whole match.

And wow, seeing yourself in print is really a big deal too for people.

It means a lot to them.

So any of these ways that you can highlight them on your Web site, have to have their permission of course to do it.

In our brochures they're all over our stuff now.

You know?

And you know, women who were embarrassed to have their picture taken, you know, are happy and feel good that they're accepted just like how they are.

So photographs can be a big deal.

I was photo phobic for years because as a teenage girl at Stanford dermatology clinic, I had naked pictures taken of me for science.

And this was a teaching school.

Young residents.

It was an awful experience for me, okay?

I wouldn't let my picture be taken for years.

I remember the first time I let somebody actually interview me about what I was doing.

Now I'm trying to talk our PR guy into getting me and Representative Mock and a couple other women leaders that I know, Susan Webb and get us on cover of Phoenix magazine.

Stephanie Mock is a legislator who had an accident and she's a burn survivor and she just got the biggest bill ever through the state legislature because it changed all the language to get rid of all the handicapped language and change it to people with disabilities.

And so he's like I don't know.

But I heard about this woman in Australia who was a runner who got caught in a fire.

And she was on the cover of Australia's biggest magazine.

And she's been being interviewed.

I listen to BBC in the middle of the night or talk radio, don't ask me what I know about sports. 

I got inspired and I am normally embarrassed but I am proud. 

If you go to our Web site right now it's me and Stephanie standing next to each other as I was giving her an award. 

So that's a big difference.

Now not because I want to do it but because I know what it means to see us reflected in public.

As you all do when you go to movies or whatever and you say is that person in a wheelchair really a person in the wheelchair?

Or that news show on TV with the blind guy, right?

That we know isn't blind because we've seen him in so many other TV shows so there's just no way.

So getting reflected.

In whatever ways that you can with their permission means a lot to them.

And really boosts their leadership.

I mean, they have gone to a whole other level as we started to do that because we finally hired somebody to do marketing and PR when we have the sports center because that's a business that doesn't run unless you get members.

So we needed him and he was, like, we don't want stock photos, we need to really get good photos and redo the brochures.

And so they're all movie stars now.

You'll see some of them in fact during lunch today.

Then we can show you, there was a question about that Medicaid link to the guidelines about peer mentoring reference and we, Tim or somebody found, thank you, found that for us.

So we're going to put that up on the screen for you so you can actually see it.

Am I blocking your view?

So let me come over here where I can see it.

And I'll read it also here.

"Dear State Medicaid Director, the purpose of this letter is to provide guidance to states interested in peer support services.

Under the Medicaid program.

Centers for Medicare Medicaid services recognizes that the mental health field", mental health field, that's interesting, "has been a big shift in the paradigm of care over the last few years, now more than ever there's a great emphasis on recovery from even the most serious mental illness when persons have access in their communities to treatment and supports that are tailored to their needs.

Recovery refers to the process in which people are able to live, work, learn and participate fully in their communities.

For some individuals recovery is the ability to live a fulfilling and productive life despite disability.

I'd say along with, for others, recovery implies reduction or complete remission of symptoms.

So right away we see this is coming, so we need to do a little more work to get one of these letters for us, right?

For the rest of the people that are left out.

States are increasingly interested in covering peer support providers as a distinct provider type for delivery of counseling and other support services to Medicaid eligible adults with mental illness and/or substance use disorders.

Peer support services are an evidence-based mental health model of care which consists of a qualified peer support provider who assists individuals with the recovery from mental illness and substance use disorders.

CMS recognizes that the experiences of peer support providers as consumers of mental health and substance use services can be an important component in a state delivery of effective treatment.

CMS is reaffirming its commitment to state flexibility, increased innovation, consumer choice, self-direction, recovery and consumer protection through approval of these services.

Man, I like that sentence.

“The following policy guide lines include requirements for supervision, care coordination and minimum training and criteria for peer support providers."

Anybody have any guess which legislators on Capitol Hill worked to get this letter written?

I do not know the answer for sure, but I'll bet you Patrick Kennedy was one of them.

Because he's been a very powerful advocate.

As states develop behavioral health models of care under Medicaid programs, they have the option to offer peer support services as a component of comprehensive mental health and substance use service delivery system.

When electing to provide peer support services for Medicaid beneficiaries, state Medicaid agencies may choose to collaborate with state mental health departments.

We encourage states to consider comprehensive programs but note that regardless of how a state models its mental health and substance use disorder service delivery system, the state Medicaid agency continues to have the authority to determine the service delivery system and medical necessity criteria and to define the amount, duration and cope of service.

They're giving the power to the state.

They are just giving them permission and power.

States can choose to deliver peer support service through several medicate funding authorities and the Social Security Act.

The following authorities have been used by states.

Section 1905, A13, 1915b waiver authority which is what we have.

Or, I don't know if we're a B or a C.

And 1915C waiver authority.

Do you want me to go on or is that enough?

It shows you basically down here supervision must be provided by competent mental health professional as defined by the state.

The amount, oops, the amount, duration and scope of supervision will vary depending on state practice acts.

The demonstration of competency and experience of the peer support provider.

As well as the service mix.

DARRELL JONES:  Amina, what we can do is put this on the web page for this training so folks can read it at their leisure. 

AMINA KRUCK:  Okay.

So can we just go up a second, April.

I want to see what number 2 is.

So number 2 is care coordination and then 3 is training and credentialing.

So this is interesting.

So this is something I don't know if we need, if we can go to the states.

I'll talk to our Medicaid agency to clarify a little bit.

I know that as I said, they're working to be able to get us to be able to bill for some of these things.

So, they do have this.

I know in our behavioral health system in Arizona.

That because there is this whole credentialing piece of it for somebody to, they have to go through a training program and all of that to do it.

They have to have so many ongoing education credits and that kind of thing.

So interesting but it is focused on the mental health system.

So we may have some advocacy work to do to get that included for our centers.

And we certainly have even a longer history of providing peer support.

Even to, if you could get your staff paid for it, right, then you could use the money you were paying your staff without a Part C to pay a volunteer coordinator if we could get this going.

So, any comments, questions, anything else before we get into the meat of the training program today that April is going to provide you with?