APRIL REED: I want to spend a few minutes and start breaking down some of the mechanics and some of the basics of the program.

And just walk you guys through that.

And then Amina will take over and talk a little bit more about funding and this whole debate about paying or having volunteers.

So our peer mentor program we can take referrals from any of the other programs at ABIL and over the years, we've expanded more and more to partner with different programs.

I wanted to give you just an idea of where our, we call the mentees.

So where are these consumers coming from, what program are they working with at ABIL originally.

So our early intervention program works with local rehabs and hospitals and he goes into the hospital and does outreach with individuals who are newly injured, newly diagnosed and families.

So he can refer someone to have a peer mentor so we will send some- body out with him to the hospital.

That's really important.

We don't send them out on their own, they go out with him.

If you're going into a hospital, lots of considerations about HIPPA of course, and you want to make sure that the hospital knows that you are coming.

That the social worker has requested you be there.

One of our local hospitals had a major issue with this.

They were running their own peer mentor program and had somebody come in who they all knew had gone through rehab at their hospital.

And this individual was selling vitamins to the people that he was mentoring.

And so of course when the staff found out about that, it created a huge problem.

Lawyers were involved.

Nearly shut down their mentor program.

So after that.

They really had to change the way that they did things.

And so they actually had us come in and we do their trainings now so people have guidelines and then we make appointments.

People come in by appointment at the request of the nurse or the social worker.

A lot of times the peer mentors are going in to talk to the families and offer them support because maybe the individual that's newly injured isn't ready to hear it or, yeah.

AUDIENCE MEMBER: Is the mic on?

I hate to divert a little bit.

Would you tell me, because I think the HIPAA training is so critical and it is so important, especially in that hospital setting.

How do you do the HIPAA training, does the hospital have to approve your HIPAA training., et cetera.

APRIL REED: I actually have the hospital do the HIPPA part.

So they have got the experts, they have got the lawyers.

I talk about disability awareness and language and etiquette.

I let the experts do the HIPAA training.

So they will actually bring in their lawyer, their HR person.

They've got a great little training they'll go through mentors with.

So I don't have to worry about that.

But I definitely wouldn't be sending in mentors without that training.

So yeah.

AUDIENCE MEMBER: Same with the hospital issue still.

Do you have to have, I know volunteers in some of the hospitals in Utah have to have current immunizations, other kinds of things that the hospital wants.

APRIL REED: The hospital that we have partnered with, because we work together, kind of from the ground up, the hospital there decided if we're sending somebody in on a one time basis we don't have to do that.

Other hospitals may do something differently.

If it's a volunteer that they really like and they're going to be using forever, they'll have them go through the hospital's volunteer orientation, immunization, they can do TBI testing.

Or, did I say that right.

Tuberculosis.

TB, thank you.

TB testing, that's what I meant.

They'll do that with them and then I just document that the person has had that training.

So, but, if we're sending just one of our ABIL volunteers, we know they're going in on a one time basis, we have an agreement with each of the hospitals so we know what they're going to require.

But we do take that referral from the social worker, the nurse, we're not just sending people in.

And our staff person always goes in with them as well.

Even if he's just sitting in the lobby there's somebody official.

AUDIENCE MEMBER: So these people are not consumers at this point.

They're just people that you go into and they become consumers at that point.

APRIL REED: Hopefully if they want to.

Sometimes we're just really meeting them for that one time share information, share peer support with the family.

At that point they're in the hospital.

They're not consumers with ABIL.

They can go ahead and go through that process and some decide to do that.

They may come to our sports and fitness program because now they're doing rehab so they're getting involved with different community programs.

So there's different ways that they might come to us after the hospital.

AUDIENCE MEMBER: Okay.

So when you talk to someone at the hospital like a social worker and you find out someone who needs this need, then you can send in your mentor to speak with them

APRIL REED: Right.

So they're going to contact us, we don't contact them.

They're going to call and say hey, I had this individual.

This individual wants this.

Their family wants this.

They'll arrange the time.

We'll coordinate with them and then the staff, the coordinator of our early intervention program will go in with ABIL information.

Go in with the peer mentor and facilitate that meeting for me.

AUDIENCE MEMBER: All right.

Thank you.

APRIL REED: Amina mentioned our Community Living Options Program.

In that program, those consumers are individuals with developmental disabilities and so that program can refer to our peer mentor program.

And so it might be somebody who is looking to move out on their own for the first time.

Or they're in a group home and they're working on volunteer goals or something like that.

So our peer mentors can work with individuals in that program.

We might partner with our youth transitions program.

I mentioned earlier that we'll go out and take mentors into the classrooms and do presentations and work one-on-one with the students.

Whatever that teacher requests, whatever the coordinator requests from us we'll do.

We've even gone in and the classroom was working on budgeting, so the peer mentors came in and we did like mock grocery shopping with them.

And so one-on-one with students so we can do whatever a curriculum that classroom has been working on.

Yeah, question?

AUDIENCE MEMBER: How did you guys get into the schools.

APRIL REED: So we have a youth transitions coordinator.

And so she is the one who's advertising and marketing that program.

And so she will build relationships with different school districts.

She's at different conferences.

Youth transition fairs.

A lot of our high school districts host annual youth transition fairs.

She's there in a booth marketing that program letting the teachers know we have a program, a curriculum we can do on independent living skills instruction.

She already has the relationship with the schools so we will go out to specific schools that she would like us to come to and give presentations or do an activity.

AMINA KRUCK: If it's another ABIL program, they, the person doing that knows how to actually help you so we will be happy during a break to give you referral as to how to reach that person.

Like I already did that for David Carey, about how did he get a health plan of $2,000 to get their name on a billboard and that kind of thing with ABIL and same thing Lee Ann, we'll give you that referral during the break.

We're happy to do that.

So just come and approach us.

APRIL REED: When I first took over the program, we were doing a little bit of marketing to school districts and just different youth programs in the high schools.

And offering to come in and do presentations and I wasn't very successful with that.

And even, you know, that's been six, seven, eight years.

The door for us in our school districts is a lot tighter than it used to be as we've seen cuts and things.

School districts, special ed teachers do not have the freedom to maybe do a field trip to the Center for Independent Living like they did in the past.

And so they really have to fight to get those.

So for me having a contact Lee Ann already is working with schools, that's how I get in.

If you're trying to market and offer it, it's a lot harder these days to find that window in the school districts.

Any other questions before we move on?

AUDIENCE MEMBER: Hi, I was just wondering about partnering with,

I know here in Seattle I've been approached by people in disability physical therapy centers that really have been interested in contacting and connecting with our organization is that a kind of, like, place you would see people being referred to your organization from?

APRIL REED: Yeah, absolutely.

Our early intervention coordinator and I will go out and we'll do presentations at the rehab centers.

We do target physical therapists a lot.

Occupational therapists.

A lot of times they know their services are ending with people.

They're looking for that bridge, that community service so that their patient has support after they finish.

Their rehab services.

We go out and some rehab centers that we have have support groups that they host.

So we'll go out there and do those.

We do service trainings with their staff.

That's a great way to kind of catch them and that's usually how we get those kind of referrals and let people know about the mentoring program or early intervention programs getting into their staff meetings has been helpful.

Did that answer your question?

Our reintegration program, one of my favorite programs to work with.

Our staff there is going into the nursing homes and helping people who have the goal to transition out of the nursing home back into the community.

And so our peer mentors can go in and talk with somebody and sit down and share about their own nursing home experience and how they transitioned out.

Amina mentioned we're always thinking of new ideas and how to do this differently and just last week I was talking with him and we'd had a conversation over the last month about what's hard for you?

Your job right now.

Or if you had more help somewhere, where would it be.

So we've been going back and forth talking about it.

And he said you know what?

I would love help filling out housing applications with people.

You know, that takes hours with somebody.

He has arthritis, so him filling that out is very difficult.

And he said would the peer mentors be able to do that?

I'm like why not?

So it's not, you know, traditionally matching somebody, but it's certainly the peer mentor going in and giving resources and information and filling out applications so we did a test run.

We made kind of a trial match and I got the woman's time sheet.

Six hours in one day.

I called her and said is this right?

That's a lot of time.

She said yeah, we just got going and we did applications and then the person said could you open my mail?

I don't trust anybody here, would you mind?

So I said hey, maybe not six hours.

That's kind of a long day.

But that was a great way for her to come in and support that individual.

So it's a way to collaborate and talking with the staff about what's hard, what can we help with.

Maybe there's a gap where a peer mentor can fill in and be a resource for you.

We also take referrals from our employment service.

This might be somebody who is looking to return to work.

A lot of our referrals from this program are really coming to our volunteer piece.

These are individuals that need job skills or need something to put on their resume or just simply figuring out can I do two hours.

Can I do four hours?

And really kind of building up their strength and understanding, you know, how is my abilities changed since my injury.

So we can help with that.

AMINA KRUCK: I'd like to say that we'd like this part to grow more.

And finding mentors who are working and have time to mentor has been a bit of a barrier but we had one person doing it and our employment network hired him to be a job coach so that's the other thing if you have successful mentors, they end up working or going off to school or something else.

So that's the good news when they leave.

That way.

APRIL REED: So who are these peer mentors?

They're individuals who have disabilities.

They're already living independently, they're integrated into the community.

And most importantly, they have a desire to help somebody else do what they have done.

Usually when somebody calls in and they're like I want an application, I'm interested, usually what they start talking to me about is the reason why

I want to do this is because I've learned so much but I learned it the hard way.

And I want to make somebody else's journey a little bit easier.

Or man, I never knew this thing existed.

I want to step in and do that for somebody else because I wish I would have had this.

And so you know, we always say there are people who have been there and done that.

So they're willing to share that experience.

They can be called after business hours.

So that's one really great thing about having peer mentor volunteers.

They're available when I can't be.

They're there in the evenings and weekends and are available to meet with somebody when our offices are closed.

Usually got to have a peer mentor who is a really good listener, it's not about them, it's about the individual they're working with.

So they've got to have listening skills.

And they've got to be people who are willing to confront bureaucracy and advocate for change.

So we'll spend a little time showing you some of our training and some of the materials and things we use to really help our peer mentors develop their advocacy skills.

AMINA KRUCK: Just to say when they come in as mentors, they may not have all those qualities.

We watch the ones they don't have develop over time with the peer mentoring they get from the other peer mentors the other thing I want to say about recruiting peer mentors is sometimes your best mentors don't volunteer.

You recruit them.

Because you see they have something to offer and they don't even know it.

Somebody who has been quadriplegic 30 years and never had skin break down, they know something about how to live as a quadriplegic that most other quadriplegics don't know.

But they don't know that.

They may feel like they're a failure because they never did anything else after they got their injury.

APRIL REED: That's one nice thing about the training.

We are really clear with people when they are filling out this application and preparing to go through the training.

They're not committed yet.

We want them to come in and listen and get information because they may not know whether they can do this or not.

It's completely fine for them to come in and say I'm not sure.

But I'll come in and hear what you guys have to say.

And so we have a lot of people that come and realize, you know, through the training that maybe there is something I can share.

I do have information that's important.

AUDIENCE MEMBER: I just wanted to know how you define living independently.

Because I know a lot of people are feeling independent and they're not in control but they're still in technical institution.

So how do you define that and is that important.

AMINA KRUCK: They have, they're making their choices about their life within the limited choice that's are available to them.

That's what independent living is.

Most of the people we work with live in the community but we go out to rehab centers and we go out to nursing homes.

Particularly trying to get those folks 65 and under out of those nursing homes.

And they may participate in our programs before they get out of the nursing homes.

We have one person who came to the peer mentor training program just curious, was living in the community and realized that through going through the training she was living in an abusive situation and decided to move in to a nursing home.

Get away from that abusive situation, and then she showed up at my women's empowerment group last month and blew my mind.

She's, you know, she's gone the full circle.

APRIL REED: Yeah, back in the community and independent again in her own place.

AMINA KRUCK: And beaming.

This is a person who has high level needs.

APRIL REED: So that's a person that came to the training what?

Maybe a year and a half ago.

Said whoa, I need, I need ABIL first before I do this peer mentor thing.

Went back and worked on some things she needed to take care of and hopefully we'll get her into one of our classes in the near future because now she's ready.

But think of it this way.

Independence isn't a location.

It's not a geographical place you live.

It's a philosophy.

It's about decision making.

So I don't live on my own.

I live with family.

That's my choice as a person with a disability.

So for independence for me, that means I'm paying my share of the bills.

I'm accountable, it doesn't matter that I'm with family.

It's about me making decisions and me being responsible.

So it's not about location.

It's about decision making, responsibility.

Yeah.

AUDIENCE MEMBER: We have a couple --

Give it a minute.

AUDIENCE MEMBER: Testing.

We have a couple questions, I'm wondering what your policies, procedures are regarding consumers transitioning from being a consumer to being a peer support volunteer do you allow that to happen.

Is there a certain amount of time they need to have been closed, as a consumer.

APRIL REED: We don't have open consumers peer mentor but we love it when they transition and are ready.

They have reached their goals, they did what they set out to do with our staff and they're ready to be peer mentors.

We love when that happens.

We don't have a time frame.

The person is saying gosh, I can do this now.

I've done what I need to do.

I'm going to help somebody else.

It's about the staff saying you can usually tell.

If somebody's ready.

We don't limit it with time frames.

We're excited when that happens when somebody is ready to make that decision and then you had another question?

AUDIENCE MEMBER: Yes, as a parent, and I'm actually not working with IL in our state.

When my daughter became a quadriplegic, I didn't know anything about anything.

It changed our whole family's life.

Do you have parents who can be mentors to other parents who are sitting in the hospital thinking what am I going to do?

Where am I going to go?

Where am I going to turn?

How am I going to figure this out.

Am I going to have to invent the wheel myself?

We lived in a real rural area and we just had to start with one thing after another.

Finally we got the schools to get an independent entrance into the schools.

It took years and years and lots and lots of advocacy.

But you, you know, parents just feel so alone.

Whether their child is injured or at birth, you've given birth to a child that you know is going to have challenges their whole life and that's something I'm wondering if IL, if some ILs do that.

AMINA KRUCK: One thing is if they are a child, we have right next door to us in the Disability Empowerment Center a Parent Training and Education Center and they do peer support for parents.

So, if it is a parent of a child that gets a disability we refer them over to Raising Special Kids because that is their expertise and they're a peer organization for parents.

So that's one answer to your question.

APRIL REED: Every state has a PIN.

Parent Information Network.

If you research that you can find the one in charge of your state.

So luckily they're right next door.

So that's a great resource.

Because our program, and I don't know if we said this yet.

Our program is 18 years old and over.

If they're a young child we would refer them over to Raising Special Kids.

But we definitely have families and siblings and parents that have gone through the peer mentor training class.

I have a couple right now her husband while she's meeting with the individuals who had the amputation he's meeting with the family and talking them through resources and things.

We've definitely done that.

As long as parents buy in to the IL philosophy.

My mom has been the greatest informal peer for other parents.

One of these days I'll get her to come to the training.

But she's like no, no, I don't, mom, you know so much.

You have all these resources.

And she does that for coworkers and people she meets.

Our electrician, I don't know how she finds these people.

But parents start talking, yeah.

That's a great resource.

So, if they're willing to go through the training and really buy into IL philosophy and believe we're there to teach independent living skill and support somebody, yeah, they're a great resource.

AUDIENCE MEMBER: April, I heard you say that you don't let consumers who are open to be mentors.

But what if a consumer was at a higher level goals like say I'm helping them apply or try to get grants for graduate school or something to that effect.

Couldn't they be a mentor helping because they want to give back helping people with more simple goals.

APRIL REED: Thank you, I appreciate that.

I should clarify that statement.

I will not let people who are open mentor if I feel it's going to interfere with the goals they're working on.

So sometimes I'll have somebody come to me and they really do have a compassion and desire to help other people but they've got stuff that is important for them to work on.

I had somebody who really wanted to mentor but they had housing to work on.

They were needing attendant care and I was like no, let's let you do that first.

I will look at it and say is this going to interfere with their own personal goals or do they need to do that first.

AMINA KRUCK: The other thing is everybody at our center isn't necessarily an open consumer that gets help in our center.

90% of what David does as an advocate we don't require anybody to be an open consumer he helps people navigate systems and he'll have advocacy issues and he keeps track of them.

But he's not they don't have to be, they may or may not be consumers, he doesn't have to check it out.

He helps them navigate the system so there are people that are involved in the center that may not be open consumers.

But maybe working on things at the center.

If that helps you.

So

APRIL REED: I'm thinking of someone right now too.

She has low vision and she has just lost more sight.

A progressive disability.

So she's a peer mentor with us.

But we matched her with another peer mentor because this person has experience on technology this lady is now needing.

So she still comes and mentors at our peer mentor group.

But she's also getting mentoring herself for a new issue that's come up.

AMINA KRUCK: There's an example where we broke our rule.

So our rules are to support the program, not limit the program.

So our program continues to change all the time to meet the needs of what's coming up for who needs mentoring.

So, if it's appropriate, we'll refer them over to be open with somebody.

In this case she's been a long time volunteer for us.

And we decided to just do it another way because there were some barriers within the other department getting her served right now and yet she was ready to go.

So we didn't want that to stop her from what was starting to happen naturally.

Because really, peer mentoring is a natural process that happens when you get people together.

We're just helping get them together.

There's a person behind you that's had his hand up.

APRIL REED: One more thought.

When you want to be careful.

If you see somebody struggling with social or behavioral issues, those are really things that people need to work on.

Communication issues.

Before you know have them work on that with staff before you consider transitioning them into more of the mentoring role.

Yeah.

AUDIENCE MEMBER: Hi I am Daniel and I am here from Paraquad ILC in St. Louis.

I apologize I was late guys.

I had a rough morning.

But I'm glad to be here.

Look forward to meeting you all. So I'm a new peer services manager at Paraquad and we're implementing, we're starting over eventually.

We're trying to implement the good stuff and overhaul that which really didn't fulfill the IL philosophy.

From that end, one thing I did as ILS is that I had peers, I'm sorry, as a former independent living specialist, I actually had participants working on a goal.

An active IL goal of attaining peer support.

So not just that they would attain peer support.

But attain peer support to better communication skills.

You know what I mean?

So it was a means to an end for gaining these IL tools.

I figured you guys utilize this.

APRIL REED: We'll go through, like, the different goals that mentees commonly have.

But yeah, communication is a big goal.

AMINA KRUCK: And they do need to have goals.

When they come to us, that's the point.

They have a goal for what they want to do with this mentoring relationship.

And that's why we want them to come through a staff person because as you know, people have trouble identifying and clarifying goals and something that can be accomplishable.

When people come in and want to establish 25 goals and you can't get anywhere.

That's why we funnel them through a staff person first so that they, by the time they get to the mentor, so it helps the mentor a lot.

Because they're clear about what they are agreeing to work on together.

AUDIENCE MEMBER: I was a bit confused.

Are they tracked?

I know they're active, how do you --

AMINA KRUCK: We'll tell you all about how we do it.

That's what the next two days are about.

AUDIENCE MEMBER: Excellent.

We don't want to put the cart before the horse but I'm interested to hear about outcome measures.

That's a tough one.

We've got to keep the lights on and we have to make sure you're program is effective efficient and timely and all that good stuff.

I wondered if that was going to be addressed.

APRIL REED: We're going to talk about documentation from the peer mentor side from how do we document services as the volunteers and then how do we document for these consumers who are mentees, so we'll talk about it from both angles.

AUDIENCE MEMBER: Thank you.

AMINA KRUCK: You've got one more question here.

AUDIENCE MEMBER: Thank you.

I was, you was noting that you asked the mentors to be involved in contact with mentees, at least twice a month.

It brought up the question for me of when you're inviting someone into a mentor role and going through the training, do you set an expectation of a commitment time for example, we're asking you to commit for 12 months to start out this program so you develop a relationship with them as opposed to someone, that not being clear and therefore the potential, falling off and potentially damaging the relationship with the consumer.

APRIL REED: We do not.

So we, we haven't, what we wanted it to be is we wanted it to be flexible for the volunteers.

So a lot of the volunteers, their hesitancy is I've got this disability and things change for me all the time and you know, is this like another job for me?

I had my own stuff to take care of.

We didn't want to say you have to do a certain amount of hours every month.

You have to mentor on Thursdays and Tuesdays.

We wanted it to really be something that the mentors and mentees negotiate together when they're introduced.

We'll talk about this more.

Really depends on what the goal is and how they agreed to meet.

Some of them it's going to be a little longer, depending on the goal, depending on the disability.

Others if you go into a rehab center or nursing home, maybe you're meeting a couple times and then that person has reached their goal.

So it really is a negotiation between the peer mentor and mentee.

My job is to facilitate it and know how are they going to be in contact, are they meeting, we do evaluations, all kinds of things we will get into to check on their progress.

Only time I'm intervening is if there's a problem where they're not working on those goals and then I have an issue.

AMINA KRUCK: Just remember that's why we have a dedicated volunteer coordinator, she does a lot of assessment with these mentors before they ever get matched up with anybody.

She's done an interview with them.

They've gone through an orientation and training program.

So by the time she gets through that, so she's seen them interact in groups, she's got to know them better.

She's got a sense of the kind of commitment they are and the kind of person they are.

Are they a short-term commitment or long-term commitment.

That's another way that you match people.

Because somebody who is here because they're in town, from the Navajo reservation and they're in town for certain period of time for rehab and they're out anyway.

That's a different kind of relationship that somebody else, some of the mentors end up being lifelong friends but only some of them.

APRIL REED: It brings up a really good point.

I do screen for that during the peer mentor training.

I know what is their ability to commit.

If I know they're job hunting right now, you know, there's a good chance I might lose them in three months or if there's a student.

I know there's a limited time I'm going to have them.

So that doesn't prevent me from training them.

I just have to have awareness about I need to be mindful of this person might be with us for a short time.

AMINA KRUCK: And we never have to limit the people coming into the training other than if they can't function in a group in an egalitarian respectful way because we lose nothing by them getting the training.

The training is fabulous for everybody.

I send new interns, I send new staff through that training if I can because it helps them orient so well to independent living philosophy.

APRIL REED: We'll talk more about the training.

But we're actually sitting with people for two and a half days during the training so you get to know people well and kind of gauge what their motivation is.

That's really helpful because sometimes people come in with the idea that this is something they're going to put up on their wall and get paid for eventually and they're just here to you know, get the training from us.

So we really do kind of look at what's their motivation for being here.

AUDIENCE MEMBER: Going back to parental involvement, we have developed a partnership with a parent center that has applied for a federal grant.

And one of the requirements of the grant is that they work with an independent living center.

So what we are thinking of doing once they get that grant, and we're just still thinking on that partnership even if they don't get the grant, is establishing a support group for the parents and the individual where the parents are in a support group when the individual is also in a support group.

So they work together.

AMINA KRUCK: That's great.

I'm wondering because of time if you could jot down your questions because we have so much of what we do answers all these questions.

If we, maybe April could just go on a little bit because I don't want us to not have enough time to finish this little segment.

APRIL REED: So one important point, one of the most important points I can make with our peer mentors is we do not expect you to be nor do we want you to be acting as a counselor.

That is not their job.

They're not there to be somebody's therapist.

They don't take on that liability or responsibility.

That's what I'm there for.

So we really enforce that with people.

You're not taking on that role.

We don't want you to.

We'll walk you through some of the ways we guide people about what are conversations I can have.

What are conversations I don't have where I find myself giving medical advice and telling people what meds to take and what not.

How do I avoid that?

We'll walk you through that.

So the mentees, where obviously individuals with disabilities.

They're ABIL consumers so they're already an open consumer with a staff person assigned to them.

They're working one-on-one with that staff person.

They're filling out the goals sheet, they are filling out an intake form.

They're with that staff person for either four appointments or one month.

And for exactly the reason Amina mentioned, is the staff can sit down with them and really figure out what are the goals?

Why are they here with us?

How could a peer mentor help?

Also gives the staff a lot of information for me about personality, what their interests are.

Even little things like you know, do they return phone calls.

Is it better to email them versus phone call, all of those things are helpful for me and the peer mentor to know ahead of time.

AMINA KRUCK: And then by cycling them through a staff person that's where you start to get accountability because they're going to set goals that will then be tracked.

Whether those goals get achieved or not.

APRIL REED: They can work with the staff person on certain goals.

So maybe the staff person is working with them on Social Security issues which maybe I don't want a peer mentor do because that's a very high-level skill to do.

So the staff will be working with that.

But maybe the peer mentor is working on helping them learn how to use public transportation.

So the staff person is always involved.

They continue meeting with that individual, continue working on goals.

And the peer mentor is coming in as an additional support.

They do work on one or two goals that the individual has.

Not every consumer is referred to the peer mentor program.

If you're coming for a home mod, I don't know that all of them would want a peer mentor there.

They're there for the home mod.

Some people would not be appropriate for a peer mentor.

They're not ready.

They need to do some things for themselves.

Communication.

Anger.

You know, some of those adjustment things, maybe they do that first and then come for a peer mentor.

And again, not everybody would even be interested in having a peer mentor, find it useful or need it.

So it's really a screening process to see if people are interested.

So the ABIL mentors are working with anybody who is a consumer who has chosen to request a peer mentor and they're working to help this individual on the, independent living goals that they have.

The mentors are agreeing to have regular contact with the mentee and they must agree to be in touch with that mentee in some way, a minimum of two times a month.

The mentors are teaching specific independent living skills that are identified by the consumer before they get assigned to the mentor, that could be anything from budgeting, cooking skills, computers, we get a lot of requests about I just need to work on self esteem, I need to work on knowledge about my disability.

We get a lot of soc rec goals where we're talking about somebody who hasn't left their house in two years and they're looking for somebody to help them connect in the community and get involved.

That's always one of our highest requests for things around self-esteem and communication

AMINA KRUCK: Self advocacy.

They often don't name self-advocacy as a goal but you realize they don't need it because they don't know how to speak up for what they need.

So sometimes additional goals get revealed in the process.

And that, I remember when they were doing that whole evaluation of CILs and how do you teach self-advocacy and how many people accomplish it.

And we were like: How do we teach self-advocacy?

Cause, like nobody comes in and sets that as a goal.

Very few people do.

You know?

So that's true for peer mentoring as well.

It often becomes something that happens in almost every relationship but they don't come in asking for it.

APRIL REED: And we will show you in some of the evaluation forms and things that we do, where we provide the mentee and the mentor with opportunity to tell us about what new goals are coming up.

You've been working together three months now, lots of new things could have happened.

So I'm communicating those changes to the staff.

We can add those goals in.

We're constantly communicating about what goals have been accomplished.

So it's an ongoing process.

The peer mentors again, they're providing people with support and encouragement, connecting people with community resources and really advocating.

Additional things that peer mentors can do for us, I mentioned the schools where they go out and share their stories and answer questions.

We also have them do things like maybe we've been asked to come and do a disability awareness and etiquette language training with a city or something like that, a hospital.

We will bring a panel of peer mentors to help us do that.

Again, getting people to share their stories, not all of your volunteers are going to be comfortable doing this.

Usually out of 40 people, maybe I have 10 that are willing.

And usually it's --

AMINA KRUCK: Out of that 10 five of them are total hams and love it, or end up being after they do it a few times.

APRIL REED: Usually about half of those are like how big is the group?

Do I have to talk for very long?

We try to make it as comfortable as possible.

We have questions ahead of time.

We do it in panels.

So, it's a great way for people to share their story and really again helps us have a panel with a lot of diversity where we wouldn't be able to really educate people on so many different types of disabilities and experiences.

We're going to talk a lot more about the groups we do but just to give you an introduction, we do offer mentoring groups at ABIL and this is one of the things that Amina and I in the last couple years have been the most excited about I think.

And have really seen growth and development.

So we're going to talk a little bit more about that for you as we go on through the training.

But we do monthly discussion groups.

I call them, for those of us who are social workers and counselors, I call them growth groups.

That's the term I prefer over more of the traditional support group.

But it's mentor sharing.

Sharing personal stories.

Sometimes they're giving the presentations.

Sometimes I am.

We have people request different topics.

And so I have to get educated and put a curriculum together.

Sometimes it's just discussion.

We want this to be a place where mentors, mentees, consumers can come and have that safe place where they're getting good IL information and being able to learn about resources in the community through group mentoring.

We also have volunteers as Amina mentioned earlier that do a lot of volunteering with us.

They pick and choose how much they want to get involved.

If they just want to do the mentoring, that's great.

If they decide to expand and have the time or desire to do it, maybe they help out at different events and maybe come into the office and volunteer.

We have some mentors that will never be in to our office because they're working and have busy lives so they're mentoring and I'm talking to them on the phone about their next match.

So they're not going to be in there day-to-day but we do have people who come and do that and want to be at the center and have time.

AMINA KRUCK: We have volunteer maniacs that are there when I leave and I'm a late person.

Stuffing envelopes, whatever, they just want to be useful and they love the atmosphere.

APRIL REED: And it's their choice, we offer the opportunities, they pick and choose what they want to participate in.

We're going to talk more about how we get people involved in community advocacy.

This is, again, is something that's been really exciting for us the last few years seeing our mentors really expand and the volunteers jump in to an advocacy role and really stepping out of the community and using those skills to make community change.

So Amina is going to talk a little bit about the debate around paid versus volunteer and the history of that for peer support program.

AMINA KRUCK: So there is that debate.

When I started, what I did also is I told, actually, I was in this post graduate thing that, through rehab services.

In San Diego.

And one of the projects I did was I called different independent living centers to talk to executive director to see if that would be something I want to do sometime and I've been working for 24 years in the independent living movement and I've never done that job.

What I talked to them about.

But I also was asking if they had peer mentor programs.

This is back in the beginning.

So what I found was there were only a few programs back then.

Montana had one.

Who's here from Montana?

Yeah.

And there's was a paid volunteer program.

And they were doing it because they were a rural community.

And that was the way to be able to have peer support available in a very rural community.

In the recovery movement, mental health movement.

People here are aware of the recovery movement?

It's like the independent living movement philosophy within the rehab, within the mental health system.

In Arizona there's a lot of that.

Recovery innovations is one of the leaders in that area.

They're actually a national company that has programs all over the country.

And they pay their mentors.

Just enough to screw up their Social Security benefits.

That's my gripe.

And, but so we debated it.

Are we going to pay or not pay?

And in the end we decided to not pay.

And this was the consensus of staff and mentors.

Several of our staff now were our first mentor group that went through actually right before I got to ABIL.

They are now staff members.

Doing outreach to nursing homes and rehab centers in particular two of them.

We decided to have it be a volunteer program because they could be there after hours and because what we find when we meet people who as you know often in centers you meet people who are like where have you been all my life.

Is that their life is so surrounded, a volunteer is somebody who is there because they want to be with you.

And people are like, so provider, provider you know whatever.

Doctors.

It meant a lot to them that somebody was choosing to be with them.

Right away that's a self-esteem booster.

Somebody is here because they want to be, right?

And also, because we wanted people to get mentoring and become mentors.

A portion of our mentor recruiting comes from people who got mentoring and they want to give back.

It starts to foster that sense of responsibility.

We wanted them to be volunteers also because they were available at times and could do things we couldn't do.

As staff persons.

So we, we've had to redecide this only one other time in our history of doing it.

Whether we do do it not.

But what we do do, and we understand the idea

It's okay either way.

We understand the idea about paying you are paying people for their expertise.

What I see in the recovery movement in the mental health system is those jobs as peer mentors and I love them by the way, and I love what they do for each other, but it does not move them out to the community in other roles.

I haven't seen that.

It's not getting them jobs in other places.

I am worried about it getting them stuck there.

Within that movement it's fabulous and I'm happy they're there.

So we decided it's better to keep it as volunteers.

So the truth is as I said, mentoring relationships like a natural relationship.

You're just kind of playing match maker to help it work.

And so, can we go back?

Thank you.

It's really that idea about being a friendship that's being developed.

And so, keep going, these are some of our mentors here talking.

We decided these are all different places that we have funding today.

There might be a couple others.

We have a little desert school's grant for our living well, and when we did this presentation in Baltimore, the person that we did it with, Tom, he actually got mentors who were graduates from the living well with a disability program.

That's another great place because it's a great program.

Our peer mentoring program started out being 40 hours long but we can't get anybody to do that any more these days.

Damn it, all that stuff is accessible and they're out there doing their lives now.

They don't want to hang out with us that much.

So we had to kind of shrink our training down.

So that's another great way to find mentors is through that living well program.

Because it's a great program.

So we are looking at, because our state agency, we have managed care in Arizona for Medicaid.

And that's not necessarily a bad thing.

It's a very well run program.

Now, it wasn't always but it is really well run.

People get excellent healthcare.

They get as good a healthcare as I get on my plan from my agency.

Because of changes with Olmstead and things, there's opportunities, already behavioral health system does get money for offering peer support and so we are, because we have good allies under Medicaid agency, are looking at how to change our waiver because we've never had traditional Medicaid.

We've always had a waiver program to adjust it so we can get money for Social Security benefits counseling and for peer mentoring.

But right now we can.

But the center in Montana I think he's in Helena.

He gets money through Medicaid for the living well program.

That's another thing we eventually could maybe get money.

But the wires are set up we can't yet.

So they bill through Medicaid and that's what pays for the living well program and that helps them with their volunteer recruiting and training.

This is something that April has researched now that there's new guidance about this and what the peer support, some requirements for peer support care set this download which you got the link to.

So that's interesting.

That's fairly new and really it was for this that you uncovered this, right?

Knowing that our access agency is trying to fix this up for us.

APRIL REED: The main guidelines for this directive is that if you are going to try to apply for funding through the centers for Medicaid and Medicare, is that you really need to document and prove that there's, prove that there's supervision, that there's care coordination and you must have training and certification for your peer mentors.

So, if you're a program that's not doing that, you're not going to be able to even attempt to apply for that funding.

So this letter is just a one page only guidance that they've given about what you should do if you're interested in any type of funding through them.

AMINA KRUCK: So there's another potential funding source that could be available.

And as we know, Medicaid is different in every state.

But, so that might be something we might even look at in the future.

So this is just a little bit about Arizona as I said.

We have a population growing and growing and growing since

I've been there, it has been a boom state, 6.5 million people.

Over half of them are in Maricopa county which is the county that we're in that's as big as the state of Rhode Island.

So we only have something like 15 counties in our whole state.

So cry to me that you've got 23 counties to cover I can't comprehend what that means to me because we have 14 for the whole state or something.

Arizona is not into government, basically.

We cover Maricopa County, Pinelle county, the county just south of us between us and Tucson area and Gila County which goes up into the mountains a bit and both Pinelle and Gila have population centers at the opposite ends of the counties where there are people located.

So we're learning how to expand in those areas and that's a goal for us in the next couple years.

Maricopa County. And I said it's big, huge.

And that's why we did it this way.

But I just want to emphasize, we just started this program when we had much smaller staff.

18 staff and at that time, remember, always half of our staff at least is the PAS program.
So we were little.

It wasn't about the size, it was about the decision to go that direction.

Inappropriate referrals, barriers.

Did you want to talk about this one?

APRIL REED: We know there's a lot of barriers to starting and maintaining this kind of program.

So we wanted to briefly talk about some of the common barriers that we across the nation that programs experience.

So some of you are probably nodding your heads knowing this as you probably encounter these.

But inappropriate referrals, you know, sometimes staff, you know, might look at the peer mentors as a place where they can put that really hard consumer, the one that calls 15 times a day, you know, and they just want him to have somebody else to call.

So that can be a barrier.

Making effective matches.

Sometimes it is hard to find mentors that are willing and able to take on that real responsibility and be motivated, be responsible.

The role of the mentor, you know, sometimes mentors get off track and they do think they're there to be the counselor, the best friend, the mom, the neighbor.

AMINA KRUCK: Get overworried about them.

APRIL REED: Feel responsible for the choices that somebody makes and that can be a barrier to trying to run these kind of programs.

Occasionally inappropriate behavior.

We have not had a lot of that.

We've been pretty lucky, but that comes up on both sides.

Inappropriate behavior on the mentee.

They think the mentor is there to clean their garage and do their laundry.

Same with the mentor, they think they're supposed to be in charge of the decision-making process.

AMINA KRUCK: I'll give you an example.

There was a community advocate.

She always showed up to transportation hearings and did things like somersaults before she testified.

APRIL REED: She did.

AMINA KRUCK: She does.

She decided to be a mentor, really enthusiastic.

In some ways she's a good advocate and in some ways she's so inappropriate and we're like do we let her take the training or not?

So we decided to let her take the training and then gently guided her to other activities that she could be involved with because she just would confuse anybody working with her.

But there are other ways that she is involved and shows up to our advocacy events.

APRIL REED: She's knowledgeable.

AMINA KRUCK: Great to have on a march.

APRIL REED: She is.

Another thing that's always hard is the constant need for recruiting, new people, new mentors, new mentees.

It's a lot to do.

And how often do we offer trainings, are we giving enough mentees to keep our mentors busy, these are all issues that we face.

AMINA KRUCK: That balance.

We've got too many mentors and not enough mentee referrals to keep them busy and interested.

Now we have too many mentees and not enough mentors.

We can't find the right mentor for this mentee.

Because of geography or something.

Always messy.

APRIL REED: Number one that I usually here, transportation, how do I get people together.

We are in a place where Phoenix we have lots of public transportation.

But, if you go right outside of that where I live.

Nothing.

It's cotton fields.

There's no public transportation.

How am I going to match somebody that lives in that area where the peer mentor is 15 miles a way, how do I do that?

All of us whether we're a rural center or we have both.

We face those challenges of how do I get people together?

How do I figure out how to match them.

And have that interaction.

Those are all relly common barriers we're going to face.

Funding, of course, technology.

All of those are things and of course like Amina mentioned, maybe we have the wrong person for the job.

Maybe we have somebody who doesn't really like people and is not going to be organized and that can be a barrier for the program.

AMINA KRUCK: Most cases you're not going to want an introvert to do this job because it's so people intensive.

Another barrier is the mentee.

The mentee has to take responsibility to have a mutual relationship.

And interact and contact the mentor too.

It's not a one way street.

Sometimes it doesn't work out because they're not willing to as you know, take responsibility for their own goals and their own participation. 

That's why when we try to duplicate this program working with people entrenched in the DD system that this is my life program, it didn't work.

They had never had a private phone call in their life.

They went from a group home to a day program or sheltered workshop.

They had no idea how to have that relationship.

They wanted the mentor to take them to the movies and pay for their way.

So we really had to do a quick right turn and really do that program in a different kind of a way.

So --

APRIL REED: So we just want to turn it over to you guys for just a minute and see does anybody have comments about barriers, because I know all of us who are currently running programs, I'm sure we've got a list of things that are frustrating or challenging about doing this.

AUDIENCE MEMBER: One thing we had a challenge with is finding appropriate mentors.

And then issues as far as appropriateness of mentees and really risk and liability and safety of the consumer and staff as far as we have people who are consumers who may have quite a criminal history that we may not find out about that.

So, like, how do you deal with the issue of if somebody is working with somebody on the weekends or night and if there's a crisis what kind of support

APRIL REED: We're going to talk to you about that a lot.

Those are the things that keep me up at night.

We have very clear policies about those.

We'll walk you through those.

Those are huge concerns as you try to do this program.

Tim.

AUDIENCE MEMBER: Find gender to be an issue.

AMINA KRUCK: So April, do we match men with men or women with women or --

APRIL REED: Typically not.

We did when I took over and as a social worker and my intensive liability fears, they put that into us.

AMINA KRUCK: Which is good because that's where we've had some sticky situations.

APRIL REED: I really changed that.

It's not an official policy, it's just something I do because I'm in control of that.

I typically will not match male and female.

There are rare cases I will.

For example I had a GED mentor, he's male.

He's awesome.

He's the only one I have who can do GED stuff.

I might send him in to work with somebody but they're meeting in a public place, they're meeting at the ABIL office for both of their protection.

We'll talk a little bit more about that.

But that's an issue and it's always something you want to be aware of and be careful about.

AUDIENCE MEMBER: I have a question.

How about training your staff?

Because I sent out an email saying I started this new program.

And how the ways since I had consumers, I know they can be helped.

Didn't get a single response.

So I'm thinking I know there's needs out there.

I'm not sure is there training for the staff or some ideas you can give us.

AMINA KRUCK: We're going to talk about that.

It's a big barrier and we're facing that barrier right now within our own agency as there have been staff changes because some staff want to hold on and they don't understand how the peer mentor program works.

One of the things that really can help is we have peer mentors come and talk to an agency meeting and talk about what they did.

And we highlighted them in our newsletter, the stories.

Kind of prime the pump that helped them think better about how to do it.

But that can be one of your biggest barriers.

AUDIENCE MEMBER: You just have to keep working on it.

AMINA KRUCK: Yes, you do.

Just like you have to keep working on getting the funding to your volunteer program.

Equal amount of keep at it

APRIL REED: We'll talk more about it.

That is a huge issue.

AUDIENCE MEMBER: Are all the mentors people with disabilities?

Like you mentioned --

AMINA KRUCK: For the most part but we talked about that there have been family members.

In the past for instance, I remember when we had a sister of a person with a disability that did do some mentoring.

But for the most part, 98%.

AUDIENCE MEMBER: Just like you said, help with GED, that could be possibly someone --

AMINA KRUCK: That's right, based on the goal they've got

APRIL REED: And he's an individual with a disability.

He just happens to have that.

AMINA KRUCK: As it turns out.

But yes, we've had in the past and that's been the case, they've had a skill that was needed.

And most of them were, had relatives that had disabilities.

APRIL REED: And we've also had professionals that have come through the training that you know, did not have disabilities.

And we had for a long time a lady who was a DDD CPS Child Protective Services case manager and she was amazing.

But the thing we really screamed for in the beginning was that IL philosophy.

She really believed in IL philosophy, that was what was important to us and she was also really good with boundaries, she knew she wasn't there to be their case manager and counselor.

She was their peer mentor.

AMINA KRUCK: So she worked with some of the stickier consumers who didn't have good boundaries because she was so good at that.

APRIL REED: We have had that.

I have a lady coming through our next peer mentor training who is just retired from DDD and is really excited and again, has really strong IL.

AMINA KRUCK: We make them honorary people with disabilities.

AUDIENCE MEMBER: One thing I'm looking to utilize that I think sort of untapped resource is actual peer attendants.

People who have done attendant service and been through the grind and rigor and there's actually a lot of need in the community for I guess respite in the sense it's not a physiological sense but that people have someone to lean on when some of those times are difficult and someone they communicate with.

Have you guys used much of attendant peer program.

AMINA KRUCK: I want to say that the 2,000 people we employ and we have, like, 10 or, I don't even know.

Maybe 15 support coordinators that all work well.

We have 20 because they're just working with 100 people.

That's a way that our center is peer that is different but some of those 20 staff members have disabilities.

Most of them are family members who took care of a family member.

And then lost that family member or that family member moved out or whatever and came to work as a supervisor working with 100 people who needed attendant care and the 100 employees they're working with.

There's more we can do in that area and that's what I woke up thinking about the ideos that I wanted to make related to that.

A little six minute about how to avoid the cubes by the people who have actually done it best and what do attendants need to know when working with people with chemical sensitivities and environmental mental illness.

Huge problem to recruit attendants.

Really hard.

There's more we can do about that and then you may know something that you've done in that area that I don't know.

APRIL REED: We've had a couple attendants come through the program over the years and a few of them of course they're working and so sometimes the volunteering piece conflicts with them trying to get paid as an attendant.

But one of my really great peer mentors right now Ida is a caregiver so she does that and she also mentors for us.

Definitely happens.

The commonality there is that caring spirit, that helping spirit, they're naturally people they wouldn't be doing that job anyway.

There is a naturalness there that

AMINA KRUCK: She knows that, I don't know that.

She knows that because she's more intimate with IDA than I am.

But I know IDA because she is there all over the place all of the time helping out.

AUDIENCE MEMBER: You've been talking quite a bit about people's personal lives in the community for mentoring.

I'm wondering if you will be addressing anything that has to do locationally because I know that the peer mentoring that there is a value to having that in the workplace not only for the employer but for the individual and for other employees within the company that surround that individual.

There's so many legalities that personally that I ran up against and including agency legalities such as social security and their take on what vocational is supposed to look like.

So will you be at some point addressing what happens in the workplace as far as peer mentoring.

AMINA KRUCK: Not really.

That's not something we've done much of.

That's something we may have you talk a little more about at another point in the training to bring up issues that you're aware of.

But one of the issues you mentioned is an issue for people on Social Security disability that letting Social Security know they're volunteering can jeopardize their Social Security.

I don't know if you know that.

AUDIENCE MEMBER: The job coaching also, the terminology that surrounds what is a coach, or a trainer on the job.

I've had people put their Social Security at risk over the issue of coaching.

AMINA KRUCK: Were they volunteer coaches?

AUDIENCE MEMBER: Yeah.

AMINA KRUCK: So just be aware of that that Social Security could say if they're able to volunteer, then maybe they're not disabled enough to be on Social Security.

APRIL REED: That may be where not having an hours requirement could be helpful.

You may have somebody with the skills and desire but you're letting them do it two or three hours a month.

They're doing it by phone and e-mail so that's a little different looking than if they're doing it 20 hours a month and more like a job.

AMINA KRUCK: It hasn't come up much but I'm very much aware of it because of all these years working with the program and it has come up for other people that were not our volunteers about it.

So it is tricky.

APRIL REED: One thing to mention we had a little exploration, we did recently, our employment office was looking for someone to be a job coach and they recruited from our peer mentor program to do that.

They wanted, they're paying the individual and so they're having him go in and, as a job coach but this is brand-new and it's been pretty limited.

They've only been doing it with him about six months.

We're completely out of that.

That's their thing with him and he's actually a paid employee so we're not involved with that.

AMINA KRUCK: We haven't been aware of the employer issues.

What we've just been aware of is the difficulty recruiting mentors for that purpose.

AUDIENCE MEMBER: One of the problems that sometimes happens is that when someone comes with that kind of support needs and they bring a mentor along, I mean, I'm happy to hear about all of this training because the mentor can create the issue that's going to cost them their job.

And I was first hand with that because the mentor who did not realize that they would be required to follow the employer rules same as the employee.

And refused to do that cost the person their job.

Hearing more about what you're training here is going to be vital, I think in the future, for vocational folks with jobs.

APRIL REED: We'll take one more question and head to lunch.

AUDIENCE MEMBER: You were talking about jeopardizing the benefits of people with disabilities now.

Is that specifically supplemental security income or 

AMINA KRUCK: Social Security is Social Security.

When you go on it and you say you're not able to work for 12 months and I'm telling you that the Social Security field rep, if they knew you were volunteering 20 hours a week would say what's the difference between volunteering and working.

Looks to me like you can work.

AUDIENCE MEMBER: So that is also Social Security disability, is what you are talking about.

AMINA KRUCK: SSI or SSDI. It is the same thing.

Proof of being too disabled to work.

AUDIENCE MEMBER: How is Social Security going to know about them volunteering?

AMINA KRUCK: How would they know that?

That's a good question. I just needed to say it.

We're saying how would they know it.

APRIL REED: I saw

AMINA KRUCK: And when people come up for their disability determination review, they answer a questionnaire and they have to make a choice about how to answer that questionnaire.

AUDIENCE MEMBER: I was just going to point out there was new legislation going on through work incentives so we need to be really careful about what was and what is now and I don't know exactly how that works out employment.

That part of employment is not my specialization

AMINA KRUCK: Are you talking about has changed or could change.

AUDIENCE MEMBER: It has

AMINA KRUCK: I don't know about that.

AUDIENCE MEMBER: But --

Getting qualified benefits planning when you're working is definitely in there.

There are very few people qualified to do that

AMINA KRUCK: Thank you.