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ANNOUNCER: The broadcast is now starting. All attendees are in listen only mode.
MICHAEL STOEHR: Good morning. I'd like to welcome everyone to today's session of the Community of Practice for Secondary Transition Series. Today's session, Effective Practices in Secondary Transition
and the focus is on Successful Health Transitions. My name is Michael Stoehr and I am Lead Consultant for Secondary Transition with the Pennsylvania Training and Technical Assistance Network or
PaTTAN. We are part of the Department of Education, Bureau of Special Education. We provide training and technical assistance for folks in school districts as well as all the stakeholders involve
involved in Secondary Transition across the state. Okay. I appreciate you all joining us today. We're looking forward to an exciting session with a number of diverse presenters. I wanted to make you
aware that the PowerPoint handout for today's session can be found on the secondarytransition.org website under hot topics. If you click on and go to that site, and just give me one second. Let me
take you there. So, if you go to secondarytransition.org, you'll be -- you'll be taken to our primary site for Secondary Transition in the state. And if you click under hot topics and upcoming
events, you'll see that there is a section for this training series. We have the sessions listed there from the last two sessions as well as today's session. If you click on today's date, December
11th and the Community Practice session on health care, when you click on that, you'll be taken to the PowerPoint for today's session. And again, that can be found on the secondarytransition.org
website. You can also locate the handout for today at -- be found in two places. Just one second -- all righty. Sorry about that, just one minute. Okay. I wanted to let you folks know that the
mission of our PaTTAN system is to support the efforts of the Bureau Special Education to build the capacity of local educational agencies as I had mentioned. We also, as part of the Secondary
Transition Initiative work with all other stakeholders related to Secondary Transition. That includes huge families outside the agency and other stakeholders. Our goal as part of the Department of
Education is to ensure that all individuals who are involved in Special Education are served in a least restrictive environment, which basically means in the general population and for those folks
involved in Secondary Transition, I think that's something that you have to do naturally, work with individuals in non-segregated environments. And I mentioned where to find the handouts for today's
webinar. And I wanted to go through just a brief outline of today's session. We will have presentations today from representatives from the Pennsylvania Medical Home, Lizanne Welding Mills who works
some PA Medical Homes, who is part of the PA Chapter of American Academy of Pediatrics. We also will have a presentation today from Dr. Jonathan Pletcher regarding the Initiatives around Secondary
Transition sponsored Children's Hospital of Pittsburgh. We also have information regarding the efforts of the Special Kids Network by Bill Barbour and Cindy Dundas from the Pennsylvania Department of
Health. And we will have, finally, a presentation from Jaime Delaney from the Children's Hospital of Philadelphia regarding the Transition Initiatives that are being generated in the eastern part of
the state through CHOP. And then finally, I'm going to wrap up with just some comments on additional resources that are available on this topic of health care and transition. Okay. With that, I'm
going to go ahead and turn the presentation over to Lizanne Welding Mills to talk more about the Medical Home Initiative. So just give me one second and we'll switch over to Lizanne.
PHYLLIS WELBORN: Hey, Michael. This is Phyllis Welborn. I'm here. I just wanted to let you know that I will introduce Lizanne.
MICHAEL STOEHR: Okay. Great. Well, if you want to go and jump in Phyllis, and go from there.
PHYLLIS WELBORN: Okay. Thank you. Good morning. My name is Phyllis Welborn and I'm the Program Administrator at the Pennsylvania Department of Health, overseeing the Pennsylvania Medical Home Program
and Transition activities. We are pleased to be a part of today's webinar on Successful Health Transitions. The department supports several programs designed to assist you with special health care
needs to -- especially transition to adulthood. One of these programs is the Pennsylvania Medical Home Program, which we have funded since 2002. We identified transition as a state priority and also
secured additional funding through a federal grant to enhance transition programming. Through a contract with the PAAP, our vendor for the medical home program, the additional funding provided by the
department is being utilized to support activities such as hiring parents, people with special health care needs as parent advisors to work with practices, families and youth regarding transition,
and establishing pediatric primary care and adult health care provided partnerships in Pennsylvania. Joining us today to discuss the Transition activities currently on the way is our colleague from
the Pennsylvania Chapter American Academy of Pediatrics, Lizanne Welding Mills. Lizanne?
LIZANNE WELDING MILLS: Okay. Thank you Phyllis and thank you Michael and good morning to everybody, and I really appreciate the opportunity to talk to you all about some of the things that we have
going on here in the state of Pennsylvania, so if you want to move us forward to the next slide, probably we can go another one. So just because -- I know we have a diverse audience joining us today,
I just wanted to just give a little -- a little bit of background about Medical Home. Medical Home as a program through pediatrics in the state has been in places about 2002. And I know that there
are a lot of different versions of Medical Home that are tossed around in health care arena today, but we're not talking about a building or a home or even a hospital, we're talking about an approach
to health care that emphasizes a partnership between pediatric clinicians and families. So, our particular version of Medical Home is family-centered, person-center care that helps the child and
their family get all of the services that they might need to be as successful and healthy as possible. So we can move to the next slide. We work with pediatric primary care practices throughout the
state to ensure all children and youth with special health care needs have access to a medical home in their community. So, that means that we are always looking for new practices who want to get
involved in our program. Right now, over a hundred and forty practices in forty-eight of the fifty-seven counties are actively participating in the program, and every year, we -- our mission is to
bring on more, so if you ever want to see what practices are involved, you can -- I think that we may reference our website in here later on, but it's pamedicalhome.org if you're ever interested to
see if there's a practice in your community. Next slide please. So, as Phyllis mentioned, transition has been identified as a priority and we've been working on sort of what we think of as Medical
Home 102 for the last few years, and that is addressing this particular aspect of children with special health care needs, you know, next developmental milestone. We look at it as the graduation, you
know, as people reach the age of 18 or 21 and they have other aspects of their lives that are -- you know, where they're making changes as well. One of those changes maybe from a pediatrician's
office as their primary care into family medicine or internal medicine. And so, we know that optimal health care is achieved when people get medically and developmentally appropriate care, and the
plan -- the idea of planned health care transition is to help maximize lifelong functioning and well-being for all youth especially and including those with special health care needs. So, I think as
educators there's a lot of focus on helping young people prepare for some of the next steps, you know, in their, you know, developmental activities, and some of those might be preparing to go away to
college, they might be preparing to enter the workforce, preparing to become responsible for many things like budgeting their own money, paying their own bills, all kinds of things that begin to
happen anywhere from, you know, when we get our first job, when, you know, 15, 16, 17 up through, leaving home for the first time, having your first child. A lot of -- a lot of new and exciting
things that happen during this period of time, but what we were finding is that, especially for children who may have -- or young people I should say, who may have some acute or chronic health
conditions, it was -- it was not something that we talked about enough to help people feel prepared for what they needed to do next. So, if we can have the next slide? So, according to information we
have, 500,000 youth with special health care needs are transitioning into the adult health care system each year. Unfortunately, a lot of that is not planned, you know, or at least was not planned
transition, so things didn't always feel comfortable, it was sometimes a shock to young folks and their families, and they were not really prepared, and they hadn't put some of the things in place
that they need to. In terms of sort of surveying parents to see what they're thoughts were, less than half felt that they received information, support and counseling that they needed to kind of help
their child be ready -- and themselves be ready for this change. Young people needed help finding a doctor that would be able and ready to see them. Sometimes, there were insurance changes that they
were not anticipating and we're not really sure how to make sure that they had done what they needed to do, they needed to make sure they knew what to do in an emergency, and how they can work
actively at staying healthy. And lastly, doctors felt like transition supports may not need to start until age 18 and yet, we know that that's a little bit late to start looking at some of the
complicated things that may needed to be addressed so that things do go smoothly. So, next slide please. You know, just a little background on how this kind of got started. It -- we've sort talked
about back -- you know, going back to 2008. And then in 2010, some pilot practices began as part of a State Implementation Grant, and those four initial practices are located in a few different areas
to the state. That project has expanded -- if we could have the next slide. So there are -- there are two sources of funding presently. And I think what we really kind of want people to know is that
there's a team approach. Our model right now is that, we're pairing one of our medical home practices with ideally, two partners in their areas who may be internal medicine, they may be family
practice who have a relationship, who where the care coordinators have contact information to speak to one another and that practice is ready and willing to take on young people when they are ready
to make the move. So, we're also working in partnership with youth in their families as Phyllis mentioned, and I think we might talk a little bit more about this, is that we -- project we have two
parent advisors. One supports the eastern part of the state and one the western part. And part of their mission is to actively involve parents at the -- and young people at the practices to talk to
them about what kinds of things they might need, additional resources, some support. Sometimes it's just, you know, somebody to listen while they're expressing, you know, frustration about how
difficult this is, how scary it might be. And we have multiple community partners that we work with. The PEAL network, the Elks Nurses, the PA Academy of Family Physicians who has helped us
tremendously to find partners in family medicine. The Department of Health, of course, the Department of Public Welfare, the Department of Education. And let me just back track to talk for one moment
about the OPs Memo because that's one important part of this project, and it's something that I can give more information to Michael about -- if he wants to make it available on his sites for folks.
And this is a benefit that comes from the Department of Public Welfare, and it really allows, you know, sort of just the abbreviated version is if you were a young person who is thinking about
changing practices, leaving your pediatrician and going to a new practice, and you want to see whether that's going to be a good fit for you, you can do that with medical assistance. And you -- you
know, sort of as a consultation, so just like I might -- you know, like my -- you know, primary care doctor might send me to a specialist for a consult but I'm not leaving my primary care doctor, a
pediatrician can send their patient to see a family medicine or internal medicine doc to try out and see whether that office is going to work for them and it is paid for. So, I will, after this
webinar provide more information to Michael if he wants to have that resource available so that -- because that's a benefit that can be used by any family across the state who have medical
assistance. Next slide please. I'm sorry, can I have the next...
WOMAN: Welcome to GoToWebinar, webinars made easy.
MICHAEL STOEHR: Sorry about that. We did have a question that came in, Lizanne. And it -- and it was...
LIZANNE WELDING MILLS: Yeah.
MICHAEL STOEHR: ...concerning, I guess the data that you had, the statistics on the wide transition piece. And they just said, are there -- is there a citation available for those statistics?
LIZANNE WELDING MILLS: I can try and track that now, and provide that for you after...
MICHAEL STOEHR: Okay.
LIZANNE WELDING MILLS: ...the webinar.
MICHAEL STOEHR: Great. That would be great. We can just post that. Okay. Thank you.
LIZANNE WELDING MILLS: Uh-hmm. This is just -- one of the -- one of the sources of information that we use that helps us shape a lot of our work around health care transition is the Got Transition
website which is a national organization and if anybody wants to take a look at the materials, they have available, you just, you know, type in Got Transition and it will take to you their site but
these are the six core measures of health care transition that we use to shape the way that, you know, we constructed our program, and I won't go through, reading them but, you know, it's just sort
of again, along with -- of being mindful and planful in the way that we do this, it takes you through a stepwise process that you want to be looking at when you're helping people and helping
practices, you know, help people get ready for making this change to the next phase of their life. Next slide please. So, you know, as part of our project we have some evaluation components. One of
the things that we use and again I...
WOMAN: Welcome to GoToWebinar, webinars made easy.
LIZANNE WELDING MILLS: [inaudible] Index which has been in use for many, many years. And then the Transition Index, the...
WOMAN: Welcome to GoToWebinar, webinars made easy.
LIZANNE WELDING MILLS: [inaudible] how -- you know, it measures their readiness to deal with health care transition, and then it lets them sort of see their progress from one year to the next. We have
a Parent Intake form which we -- our parent advisors do either face to face or over the phone with parents of young folks who have been identified by the practices we're working with and use if they
want to help, you know, as part of this pilot project. We mentioned testing the efficacy of the Ops Memo and I -- you know, I've said that I will have that information available for my Michael to
disseminate to you in whatever way it makes the most sense for them. And then we -- oh, we'll have a post survey for families and youth that we will just kind of ask them about how we're doing, how's
your practice doing, how's the program doing? Has the parent advisors been helpful? Just so that we can always be mindful what we're doing is helpful, and that if something is not working, we can --
maybe if we could -- doing it in a different way, so that families are feeling the services or practices are offering them around as valuable and helpful. Next slide. Oh, so here's just little more
on the OPs Memo. I wasn't sure if we had another slide that talks about it a little bit more, but as I said, all of the Managed Care Organizations throughout the state were required to develop
mechanisms to allow both pediatric and adult care providers to receive payment. Each one of these has a different process. The best way to try and access this benefit is to contact the special needs
unit of your individual plan and let them walk you through the process. And the information I'm going to send to Michael includes the latest listing from DPW on the contact information for each of
the special needs unit. It went into effect, August 2009 and again, it allows you -- I don't know how many of you have had the experience...
WOMAN: Welcome to GoToWebinar, webinars made...
LIZANNE WELDING MILLS: ...whatever reason, either you're moving or it's just not working out for you. And then there's a lag time between, you know, when you want to notify the plan that you want to
change provider and when you're actually able to see somebody else. And so, that's really part of the rationale for this benefit, is that, you know, people don't have to kind of wait out that period
of time that they can be pretty flexible and trying somebody else out, and then not formally making the switch through their insurance plan until they've decided that it's a good fit. Next slide
please. Again, I've talked about some our partnerships and we -- through our annual advisory committee meetings and through being part of the activities and having regular contact with many of these
folks, helps us inform some of the work that we're doing, helps us get maybe the word out there about things such as the OPs Memo, so parent education advocacy and leadership, the PEAL, statewide
family, the family organization we work closely with, Parent to Parent, the PA Youth Leadership Network, the LEND program who you're going to be hearing from a little a bit later in the call,
Achieva, I mentioned the Pennsylvania Academy of Family Physicians and how helpful they were in helping us find family practices that we're willing to work with some of our folks, the American
College of Physicians which is the Internal Medicine Organization. We try to get involved with as many advocacy organizations as we can and get as many perspectives as we can because we don't claim
to be the expert on what works, we just want to -- we want to be always hearing from people to find out what are the challenges, and another thing we like to hear from people about is, what are
resources that they're aware of that are working, so that we're always able to share them with other people who may need them. Next slide. Some things to be thinking about as far as, you know, on a
practical level with some of the young people that you maybe working with, guardianship and power of attorney concerns, I think I mentioned earlier that, you know, sometimes the mindset has been to
wait until a young person turns 18 and then we started thinking about some of these issues but folks, you know, in education know very well that that's probably too late to start thinking about some
of these things, and so with our practices, we've asked them to begin identifying young folks from 14 and 15 on up to 18 and 21, and these are some of the areas in which we've asked, you know, them
to make sure that if there are resources that families need to be connected up with, to help them for planning in these areas. And so, guardianship and power of attorney comes up frequently. Waivers,
insurance, education, transportation, vocation and employment and independence and self care, and I don't think any of these will come as a surprise to any of you on the call. They are areas that
families agonize about and the earlier, I think you began looking at what's available to you, probably, the better prepared you are for what needs to happen when you or your child is getting where he
can make some type of a change in one of these avenues. So, next slide please. We've mentioned the parent advisors, there are two in the state. They are parents themselves of young folks with a
special health care need. One, our western parent advisor has teenagers who have begun some aspects of the transition process and our eastern parent advisor has a daughter who has gone through this
process. And so, they lend a real world kind of perspective to what's happening, what parents are dealing with, what young people are dealing with and they're there as a resource to any families and
to practices to try to help us make sure that we're thinking about everything that we might need to think about. Next slide. Some of the tools we use, we have the Parent Intake Form as I mentioned.
There are tools that are available online for free. One of them is from the Florida Health and Transition Services, On TRAQ tool. And if you Google that, it will take you to it. PA Department of
Health Transition Health Care Checklist is on the PA Department of Health website. I mentioned the Transition Index. We also work on Transition Care Plans, and I'm just going to try to wrap up. So
next slide, I know that the next team is getting ready to present. So what can I do? Use any of the Readiness Tools to help the young people you're working with prepare, work on improving skill areas
identified as needs, begin to talk to the -- encourage people to begin to talk to their pediatrician and their pediatric specialist, beginning around age 14 about what can be expected and then, add
the two topics of discussion at annual planning meetings such as the IEP. Next slide. Use the OPs Memo if it's appropriate. Ask around to help find adult primary care specialist, explore the dreams
of the young people you're working with and see how they can be supported, and make sure that you know what resources are out there related to complicated issues such as guardianship and waivers.
Next slide. So, on behalf of the PA Academy of Pediatrics, Medical Home Program and our -- wonderful support from the Maternal and Child Health Bureau and the PA Department of Health and all of our
partners, we thank you. We hope that some of this information has been helpful. We encourage you to visit our website, pamedicalhome.org, or reach out to us at any point if you have questions or you
want to know something, or you may need some help with the resource, we would be happy to help you in any way we can. Next slide. And your handouts certainly have contact information of how to reach
me and how to reach Phyllis. So thank you again folks, and I really appreciate it and I hope you'll have plenty of questions and you can share them with Michael and I'll do anything I can to get
answers to you.
MICHAEL STOEHR: Sorry. Lizanne, there was a question that came in, if you're still with us. And I'm not hearing you. So, you know what, I'm going to go ahead on then to our next section. So hopefully
folks -- just give me one second and we will connect. Our next section with Dr. Jonathan Pletcher from Children's Hospital. Jonathan is running late. He's not on yet, so we're going to switch to our
folks from the Department of Health. So, I'm going to ask if Bill Barbour and Cindy Dundas and Cindy, I'm going to go ahead and unmute your line, so if you're there -- if you're there, can you let me
know you're here and we'll connect.
BILL BARBOUR: Can you hear me? [inaudible]
MICHAEL STOEHR: I can, guys. Yes, you are -- you are here.
MICHAEL STOEHR: So I'm going to go ahead and advance the presentation to your section. And just give me one second and we'll move to talking about The Special Kids Network. And if for some reason, Dr.
BILL BARBOUR: Okay.
Pletcher, if you did click in and you're logged in under a different name, if you could just type in that you are here and I'll switch you on, but it says up here that Dr. Pletcher is running late
from Children's Hospital, so Bill and Cindy, I'm going to turn this over to you for your section.
CINDY DUNDAS: Thank you, Michael. Good morning everybody. My name is Cindy Dundas and I'm the Program Manager here at the Pennsylvania Department of Health. I oversee programming for children and
youth with special health care needs. The Department of Health is pleased to be part of today's webinar in Successful Health Transition. We got several programs to assist you with your special health
care needs, especially transition to adulthood. One of these, the Pennsylvania Medical Home, you've just heard about. The Department also operates the Special Kids Network, which has been in
existence since 1996, and serves all the children and youth with special health care needs. Currently, we're utilizing the Pennsylvania Elks major project as our vendor for that program. And this
partnership has really allowed us to bring some new components to the program including needs of parents of children and youth with special health care needs to serve as regional coordinators. As
well as having Elk Nurses providing in-home service coordination to children and youth. To further describe the Special Kids Network, I'm pleased to introduce our program administrator, Bill Barbour.
BILL BARBOUR: Good morning, everybody. Michael, would you mind advancing the slides for me?
MICHAEL STOEHR: No worries. No problem.
MICHAEL STOEHR: Well, let me go ahead and do that.
BILL BARBOUR: Is that possible?
BILL BARBOUR: Okay. For a minute. You have a bit of a different arrangement here.
MICHAEL STOEHR: Yeah. Oh.
BILL BARBOUR: Well, welcome, everybody. And just a show of hand, how many of you know about Special Kids Network? I see probably about 50% of those that are on there. So, I'll do a little bit of the
history and there we are. All right. Next slide, Mike.
MICHAEL STOEHR: Hold on one second, Bill. For some reason it's advancing for us. I don't know why it's doing that. Just a little technical difficulties today so just give us one second here. And you
know what I'm going to do, let me just escape out of here and we'll do it this way. Hang on one second. Okay. Okay. Bill, just go ahead.
BILL BARBOUR: All right. Thank you, Michael. It's -- as Cindy said we have many programs that help families and kids with transition, both medical transition and the, I guess, the other type of
transition is having kids move from school to life after school. And while our Special Kids Network Program does not deal specifically with that, we do have many resources available to us to help
with that process. So our -- the network that Cindy said is in partnership with the PA Elk Home Service Program and they serve children and youth with special health care needs, to help families get
their support and services that they need to really help kids reach their core potential in whatever they choose to pursue. Next slide? All right. Who do we serve? Our -- this definition that's on
your screen is provided to us from our Federal Maternal and Child Health Services Block Grant. And as you know, that is a very broad definition of children with special health care needs so it
includes kids at risk for chronic physical, developmental, behavioral and emotional conditions and who also require health services that are above and beyond what kids generally require. That
definition, that doesn't necessarily gives us a mandate but the approach in what we do from this very broad perspective and by having this definition, we are able to reach out to other agencies and
organizations on behalf of children with special health care needs to help to, I guess, to kind of connect the dots with families and youth and help those families that we intend to navigate the many
systems that are out there that will help them to, as we said, to optimally live life to the fullest. Next slide. Okay. For those 50% of you that I -- who's hands I saw that didn't know about the
Special Kids Network, I'll give a little bit of a history. We have received funding -- continually received funding from the Federal Title V Block Grant since the inception of the Special Kids
Network back in 1996. That was during the Governor Ridge administration. He backed this concept fully and we had a wonderful kickoff for the network grant and had parents and kids come who had
special health care needs. And just a wonderful event and we've continued on since then. We just lost our screen so I'm going to refer to my notes. We -- hold on. Our focus has been children from
birth through 21, again, kids with special health care needs. And initially, when we started this, we started as an information referral service. We had an 800 number. That number is 1-800-986-4550.
And that's on the -- at the end of the slide as well. And then you can go to the next slide, Michael. We introduced a community systems development component in 1997. That was done so that we could
get ourselves added into the community. That we weren't sitting here in Harrisburg making decisions about how best to serve children with special health care needs and their families and that's
pretty much a community presence. And we have different iterations of that since we started but we still have that in place now. In 2008, we began having Parent Youth and Professional Forums. And
these were gatherings of families, youth, professionals that have an interest in kids with special health care needs to come together to learn about some of the current programs that were available,
to hear from families in particular and from professionals as well some of the issues that those families are facing. And it was through those Parent Youth and Professional Forums and that direct
contact with families and professionals that we began with a lot of good information about the current state of affairs for families that have kids with special health care needs. And that is really
helping to guide our work. Today, I'm going to continue doing that as well. And then, in 2012, somewhere in 2012, we began our formal partnership with the PA Elks Home Service Program. And I'll
explain a little bit more about what that partnership does for us. Next slide, please. Okay. The Special Kids Network is basically made up of three components. We still continue to have our toll-free
helpline. The previous partnership, we have an Elks Nurse who answers our 800 number for us and she has 500 years of experience in working with kids with special health care needs as an Elks Nurse in
the field and it's just a -- she's a walking encyclopedia of information. If she doesn't know the answer to a question off the top of her head from a caller, she is extremely resourceful and
knowledgeable about searching for that information to be able to address the need of callers through our helpline. The second piece that we've introduced through this partnership with the outcome
service program is our in-home service coordination which we provide at no cost to families and I'll talk a little bit more about that in depth. And thirdly, the -- okay. Thirdly, we still have our
system of community and regional support and community systems development but it's kicking out a little bit of a different twist, so I'll tell you about that. Next slide, please. Okay. So, you in
the audience, if you're working with children with special health care needs, for any challenges that they may have, you can either call on behalf of your clients or the families of kids that you're
working with our 800 number. We're open Monday through Friday, 8:30 to 4:00 PM. You can always leave a message or tell families to leave a message and calls are returned by the maximum of two
business days. And the calls are answered by a trained staff, as I said Mary Ann Laine is the person that generally answers the phone. And if she is not available, she takes a little time off here
and there, we have trained staff here at the Department of Health who are able to help our callers. And what we do through that, when you do call, we connect families to resources that they need. And
if needed, through partnership with the PA Elks Home Service Program, we can refer families for individual service coordination. The next slide. Okay. And this where our partnership with the PA Elks
Home Service Program comes in. And this is something that we didn't have until 2012 when we formalized our partnership with the Elks Home Service Program. What we are able to do now, as I said Mary
Ann Laine who answers the phone for us is a -- like I said is an Elks Home Service Nurse. She has, at her disposal, 23, 24 Elks Nurses across the state that she can tap into. And we also have one
[inaudible] social worker in the next. And they are strategically rotated across the state to cover a county or counties. And when a caller needs more than just, you know, resources and through
conversation with the family, we'll assess that, she is able to connect that caller with that caller's permission to an Elks Nurse or our social worker at the -- at a location that's closest to the
origin of the call. The Elks Home Service staff person will provide -- choose a home or meet that family wherever they choose to help the family navigate the system. Some of the issues the families
have are really quite complicated and cannot be handled just by a phone call. And then, you know, at some service programs, an Elk person goes out to a home. They have an assessment that they do with
the family. They help with the coordination of care and identifying resources that can help that family move forward with their lives. Once an Elks Home Service staff person is connected to a family,
they are always connected to that family as long as that family wants and needs them. And they also provide support and advocacies services for the families. And as you can see by the yellow star in
there, these services are free to the family. So, it's been a great enhancement to our program to be able to have that service coordination piece and helping families navigate the system that they
couldn't do previously with just our toll-free number. Next slide. And so our third component is our community and regional support aspect of program and--so previously, when we had our -- this type
of component, we had hired social workers or other professionally-trained to do this work out in the community. It's a community engagement. We switched up a little bit this year and hired parents
with kids with special health care needs. That has been not to take away anything that is contributed from our professionals that we have years ago but this is out of a completely different
perspective on the work that we do and I think it helps to give out some legitimacy for the work that we are doing in communities. And as you can see by the map on the left-hand side, we have six
parents, one in each of our health district is going to help to [inaudible] and they are responsible for meeting and then, working with families and professionals throughout those regions. And
they're huge, so it's a -- it's a big challenge for them to get around to the state but we've provide resources for them to do that. And so, some of what they do and what we had assigned them to do
and what we need them to do is get information from families and professionals across the state about issues that are off concern to them. And to do that, there are a few different ways. We have
Parent Youth and Professional Forums like I mentioned earlier. We do those twice a year in each region. And we have -- during that time, we have presenters that will come in and present issues that
are somewhat topical. We've had, just as an example, Eric Ulsh from the Department of Welfare and the managed care organization come in and talk to families and providers in several of our regions
about the need to manage care in those areas that didn't' have it to begin with and helped to dispel a lot of the misconceptions and misinformation that was out there about managed care and what it
means to families who have kids with special health care needs. And the big takeaway from that was that as I mentioned earlier was the families making sure that they get in touch with special needs
units in the managed care organizations. It's also the PYPFs as we called the, it's an opportunity for us to learn firsthand from parents and youths what their issues are. Our family gatherings are
-- we conduct those in a more intimate setting. It could be where we meet with one family or several families who have a particular issue and it may be around transportation, for example. We meet
with those families and even begin to kind of peeling the onion, so to speak to get down to what the real issue is around that broad topic of transportation. And we do that and intend to do that with
our regional coordinators throughout the regions. And as we begin to see some things develop, the next stage in what we have been through there are having special kids out there with needs and in
which we would gather families, professionals together and anybody that would have an interest in this particular issue could impact this issue to bring them in and work towards some resolution for
that issue. It could be at a local level, it could be at the regional level or we may end having this issue come to us and then, to going out to the state level and that's to address that particular
issue. You know, that is always to improve systems of care and support for children with special healthcare needs and their families. Next slide. We talked a little bit about this. We have Parent
Youth Professional Forum meetings twice a year. We gather input from families, youth, and stakeholders, and again, we intend to improve services for our children and youth with special healthcare
needs. Next slide. Family Gatherings. Both the PYPF meetings and the Family Gatherings is really I think one of the good, unintended consequences of that is that it provides connections with the
families to connect with other families and youths to connect with other youths and there has been some wonderful friendships that have developed as a result of us being able to assist -- facilitate
these types of meetings and gatherings. Next slide. And again, you know, you know, the -- probably the next stage of learning about issues is to have our Special Kids Network meetings and what we're
really looking at is not solving an individual issue with our regional coordinators. We're looking at systemic things. So, transportation is a -- definitely a systemic issue that many families have
across the state for a variety of ways and then, in the process of trying to tackle some of, you know, [inaudible] in order to learn more about what transportation means to different people across
the state. It's a way also through these meetings to, you know, engage our community members and leaders to help in resolving issues and we have -- just on the -- just beginning this. Okay. It's with
friends and family gatherings and definitely our PYPF meetings have been successful and we'll continue those but definitely for us, if it's the next phase in the work that we're doing and we're not
sure where it's going to take us but we're looking forward to good results and a way for our families to know that somebody is out to help them get services and resources that they need for their
children. Next slide. These are our regional coordinators, again, who are all parents with kids with special healthcare needs and their contact information and they're situated so that they -- so
that it mirrors the map -- our district map. Next slide. And you can certainly, for families and kids that you're working with, call our helpline with any issue that you want to bring to our
attention and to help your families or you can direct families to call our 800 number and or you can certainly email me. That's my email address. And I would be happy to respond to any questions you
have in the future or right now. Thank you.
MICHAEL STOEHR: Great, thanks, Bill.
BILL BARBOUR: You can put your hands up.
MICHAEL STOEHR: And if there are any questions, please go ahead and type those in now. We did have a couple of questions back when Lizanne was doing her presentation about the PA Medical Home. And
Lizanne, if I can just turn that over to you just to ask a couple of these questions that came in and then...
MICHAEL STOEHR: ...again if anybody does have questions about the Special Kids Network, please type those in. Lizanne, there were two questions came in and the one had to deal with clients who receive
LIZANNE WELDING MILLS: Sure.
SSDI, SSI income benefits and their income is over the limit and rather than having to do MAWD if Social Security is the issue, you know, it was an issue about DPW cutting people's funding and why is
there a limit on whether SS, Social Security may pay if someone is determined to be -- have a disability. And is there anything that the folks that you're working with are doing for that issue.
LIZANNE WELDING MILLS: Right. So, I guess I would say first and foremost that one of the things that we try to do with the feedback we get from families who are working with our medical home practice
is whether it'd be just our medical home practices in general or our medical home practices that are working on the transition pilot is as concerns come up whether they're individual concerns or
whether they are things that we're hearing over and over again, we do reach out to our contacts certainly at the Department of Health. We have, you know -- you know in terms of partnering with the
Department of Health, we have a little more availability to speak with them about concerns and share them as they come up so that if there are opportunities to do something to address one, you know,
something that's coming up over and over again then they can. You know, additionally, we have contacts at the Department of Public Welfare so we have shared issues with them. In fact, I think that
that's part of what went in to the OPs Memo coming in to existence was families, I don't want to take credit, you know, in terms of the Medical Home Program but just to let you know that the OPs Memo
came about because families reached out to the Department of Public Welfare and made the concern about leaving pediatrics and entering, you know, the world of adult care and how, you know, they felt
very scared about that, you know, the -- you know, the Department of Public Welfare took that into consideration and that's how the OPs Memo was born. So I will say that we always share these
concerns. However, in terms of our practical day-to-day operations with the practices we work within the families that those practices are helping to support, the focus of our efforts is really to
help people reach out to the resources that are out there so that they can begin anticipating these issues and begin working around what they're going to do to make sure that the -- they're --
themselves or their child is getting what they need. So we don't really have a direct line to deal with, you know, income issues around Social Security. And even some of the changes that might be
coming up with the Affordable Care Act we just helping to make sure families are connected up with what they need to try to navigate through that.
MICHAEL STOEHR: And a second follow up question. It's kind of related to this was...
LIZANNE WELDING MILLS: Uh-hmm.
MICHAEL STOEHR: ...concerning individuals that receive Medicare benefits and finding primary care physician that would accept the Medicare, that does seem to be an issue in not many physicians accepting
it or taking new patients if they do. And again, I know that this isn't a direct thing that you would do but I'm sure...
MICHAEL STOEHR: ...you probably advise your medical home practices about.
LIZANNE WELDING MILLS: Uh-hmm.
LIZANNE WELDING MILLS: Sure, yeah, I mean, it comes up all of the time and I think in terms of family practices and internal medicine practices, accepting Medicaid, it's definitely variable throughout
the state. There are some regions in which a lot of the hospital systems routinely accept and work with the Medicaid Managed Care Plans and it's not as much of an issue and there's some regions in
which it's a huge issue. We've shared, you know, we -- certainly, the Department of Health is aware of the issue and to the extent it's been possible, we've also shared that issue with some of the
managed care organizations and we've shared the issue with the PA Academy of Family Physicians with whom we work very closely at identifying partner practices. What I can't say about our particular
program is that we don't partner with practices who don't accept Medicaid because we know that makes them a barrier for transition for many of our families because many of our families either have
Medicaid as a primary or a secondary insurance and we never want to be working with a practice with whom we can't send patients to. So I don't know whether that really answers the question. It's a --
it's a larger issue, I think, than us but, you know, in terms of doing our little part, we've made sure that, you know, our partners are open to the managed -- Medicaid Managed Care Plans.
MICHAEL STOEHR: Great. Thank you so much. I appreciate your comments, Lizanne. Thank you.
LIZANNE WELDING MILLS: Thank you.
MICHAEL STOEHR: Okay. Bill, we did have a couple come in -- questions come in regarding the Special Kids Network, too, and...
BILL BARBOUR: Okay.
MICHAEL STOEHR: ...one of the questions is regarding how families find out about the meetings or the sessions that the Special Kid Network holds throughout the state/
BILL BARBOUR: The best way would be to contact the Regional Coordinator.
MICHAEL STOEHR: Okay. And...
BILL BARBOUR: Or they can -- or they can contact me.
MICHAEL STOEHR: Okay. And those Regional Coordinators, they're listed in the PowerPoint on this slide, I believe.
BILL BARBOUR: Okay. Yes. Uh-hmm.
MICHAEL STOEHR: Okay. And then another question came in is how the Special Kid Network works with transition healthcare issues.
BILL BARBOUR: Well, yeah, I didn't mention that. I -- well, as I was talking about service coordination, one of the things through our partnership with the PYPF Home Service Program is that we have a
requirement and also, our social worker has to meet with the family. If the child that they're there to learn about is 14 years or older, we -- our Elks Home Service staff person is to provide the
transition healthcare checklist to that family or show that family where online that transition healthcare checklist can be gotten and I can give you a website just so you know. And again, this is on
the Department of Health website and that is www.health.state.pa.us/ and this is on transitionchecklist. Anybody can email me and I can send that and so...
MICHAEL STOEHR: And we actually have a link, too, Bill, I'll show folks on our transition website that'll take you to that page.
BILL BARBOUR: Yes, right.
MICHAEL STOEHR: So, we'll be getting in touch with folks in a bit.
BILL BARBOUR: Okay. That is our direct connection to helping families with transition, you know, also in the process. I'm working with the regional -- a couple of our Regional Coordinators and a
family member to develop a -- we just call it for now a lifespan brochure so that if you look at the lifespan, there are certain age groups in which certain things happened to families who have kids
with special healthcare needs. So, you know, coming right out of the hospital, families needed certain things, so, yeah, and the next stage would be going into entering the education system to early
intervention and so -- and part of that whole lifespan brochure will have a section on it for adolescents and transition will be the primary focus of that section at the brochure. So, life is a
transition, it's perpetual and we just want to have some basic piece of information so that parents can -- no matter what stage their children are in their lives and we'll have some resources that
they go to right away to begin to, I guess, the focus is all for that particular issue or stage and all.
MICHAEL STOEHR: Great. Thanks, Bill. I appreciate that. And if there are other questions that folks would come up with for either Lizanne from Medical Home or for Bill from or regarding the Special
Kids Network, please type those in throughout the rest of the broadcast and we'll get back to those folks. With that, I'm going to go ahead and move back to our presentation from Dr. Jonathan
Pletcher. And good morning, Jonathan. How are you today? Hopefully, we can hear him on his speaker so just give me one second and let me move back. And we'll pull up his slides. So, Jon, hopefully we
can -- looks like your mic is open. I'm not sure, we're not hearing you however. Maybe -- just as a suggestion, you may want to try calling in on the audio. For some reason, we're not hearing you
through the mic. I'm not sure why. Oh, you're on the phone. Okay. Great. So, Jon is calling in. He should be on any minute and we will give him a minute just to click on. As a reminder to folks, the
resources that we have today -- hang on, one second. Let me let over. Okay. So we'll be -- as soon as he switches over onto the phone we should be in good shape. I do want to -- as we're waiting for
Jonathan to join us, I'm going to go ahead and pull back to the resources that we do have available in the state that are on our secondary transition website. So I'm going to pull back up the
secondary transition.org site. And if you scroll on down on that site, you'll see that there are a number of different topical areas. One of those topical areas is healthcare and if you click on
health, it'll take you to this site and on this page are a number of resources. They are Pennsylvania's specific resources and I have the direct link to the PA Medical Home Initiative which takes you
to the site in Pennsylvania. So when you click on that, it'll take you to the Department of Health site and specific information on the PA Medical Home. There's the direct link to the Special Kids
Network and then I believe this is what Bill was referring to during his -- at the end of his presentation when he was answering that question about the issues around transition healthcare. And this
particular site takes you to the direct link to the transition healthcare checklist, the transition to adult living in Pennsylvania. That document, a number of folks have found very useful. It is
something that I think is really a viable option for folks involved in transition especially for youth and families. It is written as a writable PDF which means that you can typewrite into the
document and save it from year to year as you're working on transition. Okay. I also wanted to point out that we do have links on the site to a couple of other resources. We have information about
emergency preparedness. There is a document also included along with -- in the emergency preparedness piece on communication and how an individual especially an individual with limited communication,
oral communication can prepare in case of an emergency. So when you click on that particular resource, what you'll find is this communication passport which goes in and it connects to how to list
things that an individual want, a emergency provider, be that a doctor or an EMT to know about themselves. It's a nice resource especially for those individuals that would not be able to communicate
on their own. There's also additional resources specific for individuals with disabilities to prepare for it in case of an emergency. We also have listed there two additional national resources. One
is the resource link to the healthcare transition initiative at the University of Florida. And when you click on that, it takes you directly to their website and their healthcare transition tools.
Florida for a number of years really has been at the forefront of transition regarding healthcare and you'll notice that there are a number of excellent resources on their site. And you can also find
these -- a number of the documents directly linked on this site. Okay. I'm going to now switch back and Jonathan, let's see if we can -- we're still having different quality connecting. My suggestion
to Dr. Pletcher, maybe if you disconnect and then reconnect with your phone line, let's try that. And what I'm going to do is switch now to the folks from the Children's Hospital of Philadelphia. So
Jamie, I'm going to advance to your slide and connect with you.
JAMIE DILANNI: Okay. Thank you. Can you hear me well?
MICHAEL STOEHR: I can and just give me one second. Let me get to your section.
MICHAEL STOEHR: PowerPoint and we'll be rolling in a minute.
JAMIE DILANNI: Okay.
JAMIE DILANNI: Okay.
MICHAEL STOEHR: And there we go.
JAMIE DILANNI: Okay. Good morning, everyone. My name is Jamie Dilanni and I am a program manager for a vocational transition program that we have at the Children's Hospital of Philadelphia. But today
I'm going to talk a little bit about us. Several of the psychosocial community-based transition programs that we have there are supporting healthcare transition, vocational transition, transition to
college also learned with a few other areas of need for transition that we have going on at Children's Hospital. We can advance to the next slide. Oh, hop next slide too. So we have developed a --
some core objectives to many of our program basis that I'm going to talk about today. We really need to recognize and value the importance of addressing transition from a holistic perspective that we
are transitioning the whole child that we are patient and talent-focused, what we need to learn more about short term and long term models and long term and short term goals for each individual that
we're working with. And to learn how -- to learn and understand the replicable transition initiatives and I have to say that with Lizanne speaking and everyone else on the different models that we
previously viewed today, we are using -- we help embraces the Medical Home Model and also the resources that are presented today here on the other websites. Next slide, please. One of our programs
that we've developed through an initial Department of Health Mini-Grant have been back in 2003 is a program called REACH. REACH stands for Rapport, Empowerment, Advocacy through Connections and
Health. This model is a Transition to Adulthood Psychosocial Educational Program that includes families, patients, caregivers, peer mentors, and also professionals in the health area for support of
transitioning. Next slide, please. Okay. REACH will locate, help to develop, and establish comprehensive, collaborative adult-oriented healthcare and community healthcare and community services for
young adults with special healthcare needs that encourages and supports independence and well-being. So it's really looking at that person centered approach to supporting individuals with learning
the process of transition. And it's self exploratory, supportive in an environment where the individual agrees to do support from peer mentors at the youth level and parents are receiving support at
the parent level. Next slide, please. So we've developed REACH in the different areas according to our population means. REACH initially started off as a general comprehensive group for young adults
with any disability that could come and gather and explore their needs. And overtime since 2003, we've learned that the population needs -- really needed to be broken down for youth specified on what
the goals were. We had a lot of partnership, a lot of collaboration, a lot of focus groups to help develop the REACH Program as it exist today. So what we have done over the past couple of years is
created these workshops such as REACH for college. So all of those youth with identified disabilities or identified who want to go to college, we've created a workshop just for them. And each group
follows the same model where youth are broken out into support groups for each other with peer mentors. So it maybe another of the youth who's already gone to college and earned, explore what
resources are out there and how they achieve obtaining those resources. And then the parents are also broken into a support group where they have someone in the field such as a social worker or a
physician or something to sit down and really help facilitate their understanding on what the needs are for transition if it was related to college. And there also is a parent usually present who's
also gone through the process to help support the new parents. So we've done REACH for College, REACH for Future. Those are our young adults who may have autism. REACH for potential for a youth with
intellectual disabilities. We had a Department of Health transition grant where we developed traumatic brain injury for those parents and young adults. Most recently, we've done this year with REACH
for Epilepsy and REACH for Trisomy 21 which is our down syndrome program. And generally, these REACH Programs are at minimum, a two-day workshop where they can come back and regroup and talk about
resources and what they have learned. And not only to develop the resources for the family and the individual, but also to use each of these groups as a focus group to gather more information as we
planned for the next sessions. So this model can be used for diagnostic-specific or general program, because it actually originated out of general program just to support youth with chronic illnesses
and their disabilities in healthcare setting. Next slide, please. So our workshops that are encompassed inside each REACH Program touch upon each of these topics. So we're really looking at what are
the needs for self care or self advocacy, what types of care coordination are individuals receiving or not receiving. We focus a lot on general wellness and hand preventive of healthcare, developing
positive relationships which is a very popular topic with our young adults. Talking about the IEP plan for those who are still in school and how the process is going for transition with them, school
versus the medical team. What information needs to be communicated across the two areas that hasn't happened previously. We do talk about eligibility for insurance and programs and what resources are
out there and that's where we bank heavily on a lot of the websites that already have such as our secondary transition website where we can find this information to give it to families and young
adults. Navigating the medical system, who's talking to who, who's doing what, how are we tracking that, how is the -- how is the individual, the young adult, how is the family keeping track of all
the information that they have and who would they need to speak to next, kind of mapping out a path for their transition. Employment is a big topic for those who haven't gone to college and that's
why we've broken some of our REACH events into -- specifically for those who are going to college and those who are choosing not to or deciding not to, really focusing more on employment, so that
they really have avenues to explore that they don't feel like, "I'm not going to school, there isn't any other option for me." So we really do try to read through the employment options and supports
necessary. And of course, a very common topic for any REACH is transition or transportation and recreation resources in the youth's area. And I wanted to just emphasize that REACH is not just for
young adults, it is very much a family-centered approach, so it is for youth and the parents. Even though we are really facilitating independence and breaking out the two groups so they haven't open
formed to really explore and have guided discussions on things that they need to learn about and plan for. Next slide, please. And I really want to emphasize that REACH is a structure that provides
information and resources to family, but the core of it really is mentorship and advocacy. We really want to foster the skills needed for new youth to develop advocacy skills, so that they can
utilize the resources that they are given. We don't want to set the format out where it's really -- where it's a lecturing series. It's not a lecturing series, that really is a group formation with
group support and the mentorship is an important piece, but we can have young adult mentors who may have chronic illnesses themselves and the disability and they're sharing their personal
experiences, both positive and negative and how they've navigated the system and how they can provide encouragement to others. And the same with the parent side, the parent leaders are providing that
same type of support on facilitating their -- the -- keeping the progression -- the progression of transition and explaining what their situation was and how to move forward. And our staff is
important because they are guiding the process during our REACH events so we have -- depending on what group we're running at the time or what workshop we're running at the time, we invite
physicians, our social work team, even our nursing staff or any other support staff to participate and brake off into both youth and parent groups which are held simultaneously. But I just really
want to stress that the facilitation is really for mentorship and advocacy on top of all the resources. Next slide, please. So I'm going to talk now about a second program that we have concurrently
going on at the Children's Hospital which is CHOP Career Path. CHOP Career Path has individuals referred to and then supported by the Office of Vocational Rehabilitation and the Office of
Developmental Programs in Pennsylvania. And it is an inter-disciplinary program that is assisting young adults with chronic illnesses and disabilities to really make a successful transition from a
school-based setting to a competitive work environment and it is a supported employment program. We're really trying to bridge that gap for those individuals who identify that they are not ready at
the moment to go to college or have chosen not to go to college, so that was how the Career Path was born. And Career Path initially started as a grant in 2007 with the Office of Vocational
Rehabilitation and it has now moved into a more structured program with a great referral base and a lot of our Career Path participants also participate in the REACH Programs or people from the REACH
Programs are referred to Career Path through that mechanism. So they are connected in some way. Next slide, please. And our vision is to provide occupationally skilled workers, both academically,
vocationally, technical and with workplace competencies that really helping them integrate into a community setting with both socioeconomic, technological and environmental challenges in a -- in a
complex changing society regardless of disability. So what we're really looking at is transitioning our young adults into community settings and teaching them skills to adapt to a new environment and
to develop strategies, so they can function successfully and be productive member of society. We do help them obtain reasonable accommodations, but we're really trying to teach the young adult of
what it is for successful transition related to independence and using their strategies and resources independently in a community setting. Next slide. So we have many partners in order to support
our clients in the Career Path Program, so as we can see from the diagram, we really want the program to be person-centered, but in order to provide the support that we need for each client, we're
utilizing a number of resources both internally and externally at the Children's Hospital. First, we have our partners who helped us support the individual and help with the intake and referral
process which is the Office of Vocational Rehabilitation and Office of Developmental Programs. And once we have a partnership with them to support a client, we're using the rehabilitation team to
help assess the needs and skills of the individual to help them reach their goal. And then we use the various departments at CHOP to provide training and placement. And in order to support the
training and placement, human resources and diversity inclusion at the hospital has become a partner of the program to get to learn the individual and for the individual to learn the business side,
networking and all the skills needed to obtain a job. There is also an employee resource group that exist at CHOP, it's called the All Abilities Resource Group and it's comprised of staff members
across the organization who promote and advocate for diversity and interest in a work -- in our workforce at CHOP in general. And we also have the transition special interest group which we'll talk a
little bit more about, a talk that has comprised of professionals across the organization to really look at our policies and procedures and all the resources that are out there to our hospital to
promote and develop our transition programs. Next slide, please. So CHOP Career Path what we do exactly is after referral. we use a multi-disciplinary approach to transition where we're using the
rehab team to complete an evaluation, complete training and prepare for placement for competitive employment. Our model specifically is looking at everything that's related to the individual, the
medical, the social, education, business and community basic needs. Excuse me. Next slide, please. So our evaluation is comprised of several components. We do something called the pediatric
comprehensive out-patient rehab evaluation. For short, we've called it the PCORE. In essence, it's a narrow functional assessment where we're looking at a holistic approach to the individual, we look
at IEP reports, previous medical records, neuropsycho reports. We really try to gather as much previous information that we can and we also use health insurance and/or beyond ODP funds to complete
the evaluation. So individuals are receiving a physical therapy eval, an occupational therapy eval, a speech eval, and then a Career Path team which is comprised of a special education consultant, a
counselor and a social worker to really look at how the individual is functioning in a community setting, so the eval happens in a real workplace by each discipline completing components and one
comprehensive rapport. It really looks at what the strengths are of the individual, what the goals are, interest, inventories are completed, so really looking at the individual as a whole to help
them develop vocational goals. Next slide, please. And after evaluation, we developed skill development and training through internships. They can be one, two or three sites. So that happens on a
larger scale, but then additional support is given to help develop the skills need for competitive employment. So group work is done both what professional skilled development, personal develop and
then each individual also receives individual treatment for counseling, social work and other means related to skill development. Next slide, please. Some of the skill development that occurs in the
work program, task analysis, creation of strategies which might be motor and tracking memory, procedural things, learning how to complete steps, communication strategies and use of technology.
Technology meaning things that we use in everyday life such as computers, different software programs and even assistive technology of the individual has a need for assistive technology to accomplish
what they're trying to learn. Next slide, please. In personal development, we're really focusing on the skills needed to place for competitive employment such as, you know, interviewing, employer
relationships, what their expectations are, personal issues work -- versus work issues and how to function in a work setting and increasing communication skills. And in individual sessions, everyone
receives one on one attention for the resume writing, general planning and organization, one on one practice interviewing whether it's with someone from our team or someone from human resources and
feedback on work ethic and behavior in a workplace and performance feedback. Next slide, please. And each individual works with the Career Team Path individual and for placement. So they're applying
for jobs, whether internally inside the job or outside in the community setting, but they're also learning how to network, how to follow up, but all of these things, if you look to the diagram on the
right all happen simultaneous. So they're continuing they're internship, they're continuing the development, they're learning how to network and placement is happening at the same time. So it's a
continuum. It's not a segmented process where everything is broken up, but everything happens as they master one skill while moving onto the next while keeping them involved in the internship which
are generally 20 hours a week. Next slide, please. So our approach is to really look at, you know, the business and community. what are the needs of the community, what are the needs of the business,
and what are they looking for, what skills does it need for me to build, what did they ask of me [inaudible] they're asking for themselves, are they reaching that independence, are they handling
their healthcare needs, so they are successfully able to work. And then also their social needs, their acclimation to a community environment working with a multiple of peers in a -- in a dynamic
environment and what type of supports are they developing and what type of supports do they need in the social environment. We're finding that, you know, these three areas are so most important for
successful maintenance of a job, not just obtaining the job, but it's keeping our young adults employed longer and if they're mastering our independence in each one of these areas, they're more
successful. Next slide, please. So after placement, it can -- coaching continues. We're working with OVR, our individuals are receiving coaching up to post 90 days of employment for a successful
retention of their job. Everything is individualized per client, very client centered. This is not -- everyone goes through the same process. So everyone's goals and treatment plan are based on their
needs and their vocational exploration and interest. They get a lot of support with learning what they need to do on their job even if it's down to what they're learning needs are, down to benefits,
all kinds of things personally related to each of their positions. And there's a decrease support as time goes on to fade out. The nice thing about the Career Path Program, when someone becomes
employed at CHOP, we are still available to assist them and for consultation to work with their supervisor or manager, their mentors to continue to assist their learning styles and communication
needs. Next slide, please. So these are just some of the departments that we've utilized inside the hospital to provide training and to provide support. Can everyone hear me okay? I'm getting an
MICHAEL STOEHR: I do, you're good. You're...
JAMIE DILANNI: Okay.
MICHAEL STOEHR: ...a little bit ago, but then you're good.
JAMIE DILANNI: Okay. Thank you. So these are departments that have hosted interns successfully and have even hired some of the interns that have come through our program and there's a few pictures
there. But since 2007, we have 26 young adults who have become employed. All of them work more than 20 hours per week, more than $10 per hour and 10 -- more than 10, I think we have about 12 or 13
that have employed greater than three years at the present time. And it's not just at CHOP, that's also in the community as well. Next slide, please. So the core benefits of the Career Path Program
is, you know, being in the hospital setting and coming from a medical home model and having all of the clinics and the resources at hand especially for young adults who is known to the system.
There's a lot of person based benefits. They're learning how to be more self-sustainable. Their self-efficacy is increased and they're becoming very independent at managing their healthcare needs in
terms of coming into a community-based environment. They're more self-reliant. They're -- and they're becoming more independent of public assistance and some of them are even deciding to prepare for
college or a career based on the work experiences that they're receiving. And from a business perspective, there's a lot of approach within the organization, well, a more inclusive workplace. We're
developing seasoned entry level staff who are more prepared for the culture of a hospital environment or a very fast paced dynamic environment and we're able -- we're able to pilot positions, we're
customizing some things for young adults and for departments and receiving supports across different departments. Next slide, please. So in addition to the REACH Programs and the CHOP Career Path
Program, CHOP is really adapting the Hospital Wide Transition Program Planning Initiative and I want to reference the six core measures that were talked in the first presentation by Lizanne that CHOP
is really embracing the national healthcare stuff from the Nationall Healthcare Transition Center with those six core policies or six core measures, I'm sorry, to create a transition policy, to
identify the cross organization and how we can point them in the right direction and how the first point of contact whether their clinical, their primary care physician can really get them on the
path to the different programs in the State of Pennsylvania and inside CHOP to get them on a transition path. What do they need for this transition preparedness and assessments, what are clinicians
doing to help them prepare to move onto the next steps? Are we creating those transition planning steps with them is -- when is that happening, when does it need to happen, how is it going to happen?
And then the transition of care, we're really looking at when is an appropriate time. We have a multiple of patients who might be in several different specialty care clinics in addition to primary
care at children's hospital, so having a plan where transition is occurring across their needs is really important and we're taking a look at our models right now to address that. And one of them is
trying to create a standard of notification across clinics and use electronic medical charting. So we're exploring options with those as well. When transition is completed, how are we tracking that,
how are we measuring that, how are other clinicians who are working with the individual aware of what is going on, so we are really trying to look at the six core measures through our transition
special interest group in how we can apply these to CHOP and create some type of consistencies, some type of man measure for each individual that needs transition services. And last, we want to
develop a transition tool kit for patients and families, a piece that's a take-away no matter what clinical specialty is seeing them. If they are not coming to the REACH Programs, they're not being
referred to the CHOP Career Path Program, what are they receiving in their clinic, what materials can we provide that are comprehensive that each clinic across the hospital can provide to the
patients and families so they can start to navigate some of the resources that are available in the State of Pennsylvania to really move them forward with transition. So we're really looking at these
system wide strategic planning strategies and develop them to some that can be either replicated from clinic to clinic or shared across clinicians in the system. Next slide. I want -- our
Hospital-wide Transition Special Interest Group is really trying to tackle some of these issues and we have a great team of people who have various roles, some of them are physicians, some of them
are nurses. We recently have an addition of a nurse practitioner who was hired specifically to help navigate the 21 population over into adult pediatric care and to be that relation person between
CHOP and whatever other provider they maybe being referred to, so that's fairly new to us at CHOP. What toolkits for healthcare providers can we create? I know that we have discussed and shared the
track with many departments and modifications have been made, we have transition readiness assessments, we're learning how to get some of our materials shared and put on our electronic medical
charting system, so if a provider is going to go into resources in our internal system, they're able to provide -- they're able to pull up a good track or the transition readiness, health assessments
and they're able to print them off or use them right there in their session with the individuals and then keep that information in the medical chart with flags that, you know, this individual is
going to transition. We have a whole team working. Our electronic medical systems called Epic. We have a whole team working on -- working with our IS team on how to make these tools readily
accessible for those youth who have better identified that needing these transition services. LEND, our Leaders and Educational Development Trainees, we've developed a learning link, a learning link
is our online system for continuing internal education and mandatory education for staff. We've just recently created a whole model that is -- has videos, questions, scenarios all based on transition
and we need for youth with special needs in healthcare setting. And that is being bold out now. So our new LEND trainees are going to have training and support and access to resources related to
transition. We have program specific consultation, we have special-ed consultation in-house for those patients who might be identified of needing a little bit of extra support maybe with reviewing an
IP or, you know, getting them referred to OVR or Office of Developmental Programs where we can go and assist a clinic, a physician, a social worker with helping them connect to those resources. And
our adult consultation program again is having a nurse practitioner at the hospital who's going to help those identified patients and families with that need to get over to adult healthcare that's
going to match their needs. I want to encourage everyone to also check out our transition website at chop.edu/transition. When you first go to that website, it's a general website that explains what
issues we're taken at CHOP and over on the left-hand side, there are resources that you can click on, there are some videos. The GI Department has created a great video that is patient-centered and
it's actually a video done with the patient speaking about the transition process and their experience. So we're trying to provide these online tools for families to view and see patient and her
perspectives on transition. There's also links to the Career Path and REACH Programs and all the information about those. Next slide, please. Also on our transition website, we have information about
a care binder. A Care Binder was also initially, agreed that happened a few years ago of learning how to teach families and patients to have collective, comprehensive materials related to their care.
So, the Care Binder was created. The Care Binder is the picture you see on the left-hand side. At CHOP, we actually have a Physical Binder and then inside are pages that are tabulated to sections
that the individual may need to collect information on about themselves, emergency contact, the physician with, one page summary about their medical healthcare, lab section, procedure section, school
report, corresponding social service agency section, which this can be completely customized. But I want to encourage everyone to check out our transition website, those materials that are inside
this binder are listed on our website and are both in English and in Spanish and are in PDF form and can be printed off of our website. So, people can make their own Care Binder so, this is for the
public. So, these are all on our Transition to Adulthood website. And this slide here also shows that we have those links to our REACH Program and that's updated regularly if you click on there, you
can see on our next week's events are and these are open to the public. There is an email address and a phone number to contact if someone is interested in participating in one of our REACH Programs.
They are not specific just to patient's account. The Career Path Program information is on there. That is currently open to residents in our -- in the Pennsylvania area that is accessible to come to
CHOP and through accessing resources to OBR and the Office of the Developmental Programs. And information on the Career Path is there. Again, our Care Binder sheets are on there. We also have
Transition brochure which I didn't really talk a whole lot about. The CHOP has created Transition brochures that are broken down into useful topics and texts to think about and to speak about for age
groups. So, they start as early as ages four and five when you have a child with special health care needs and/or disability, what issues, what topics do you need to explore at that age group. And
they go all the way up to above 21 and these are also in PDF form that you can print off and use and share in your own areas of business and practices. So, there's Transition PEP sheets for families
and patients. And also please check out our videos. As you--there's a link on the left-hand side and below where the picture of a young lady is. A series of videos based abut Transition in different
clinics in the hospital with information for families and patients. Next slide, please. Oh, I'm sorry. So, I got to have more slides. So, my name is Jamie Dilanni and I am from the CHOP Career Path
Program and my Director's Symme Trachtenberg, we both have a lot of information more beyond our website. Another tool that we're using so--our email is listed there, if anyone would like to contact
us or open up questions that we can answer in related to our Transition in Michigan at the Children's Hospital in Philadelphia.
MICHAEL STOEHR: And Jamie, we do have a couple of questions that came in about...
JAMIE DILANNI: Sure.
MICHAEL STOEHR: ...your programs at Children's Hospital in Philadelphia. When is an individual eligible for like, involvement with this--the programs that you mentioned?
JAMIE DILANNI: So, the REACH Program, generally are age 14 and up. I think if you look more at REACH for college and we're really looking for individuals who are in high school. So, the REACH Programs
have -- do have an age range next to them. I know when we did the REACH for TV IV -- they're with our grant through Department of Health was the target age was 15 to 19. So, each one, but the average
is between 14 and 21. CHOP Career Path is 17 to about 22-23 kind of, depending on the referral of the individual since, you know, we are on a pediatric setting. It is a transition to adulthood even
it's, you know, it's not a complete adult model but it is a Transition Support program. So, we do have some age ranges listed on our website for each specific one but I want to say in general it's 14
MICHAEL STOEHR: Great. Thank you. Do most of these programs operate out of your main campus in Philadelphia or do you also connect to some of your satellite sites?
JAMIE DILANNI: We have connected to our satellite sites for our REACH Program. We have done [inaudible] in Bucks County and other areas in, you know, surrounding counties in Philadelphia, I want to
say. I do want to encourage people to use the REACH email address if there are -- is a specific need in your area, also the -- I want to call it the curriculum of REACH, if you need information about
kind of, how to structure or reach in your own area, we do have some general curriculum on how we lay out sour sessions and how we worked with the families and we worked with the parents, maybe what
types of topics we bring and how we guide the discussions, that we do have resources for that.
MICHAEL STOEHR: A question came in and I'm sure this is on your site but, how does someone get referred or how would every family refer, like, how would you refer a family for services through your
JAMIE DILANNI: Through Career Path?
MICHAEL STOEHR: I guess through Career Path, yes.
JAMIE DILANNI: Okay, so a lot of times people usually go to OBR and they may know of our program already and ask if they can, you know, explore our program. A lot of times it's from the clinics, from
their physician. So, referrals can happen. A family referral so, if a family calls and is asking to be referred to the program, a consultation will occur. So, it will look at what the individual's
needs are, what their goals are, what their resources are. And then in that consultation, they will also be given resources that they need to come to the program. And then if it comes from a
clinician, we open up that conversation about the individual and bring the individual in and have an intake or if OBR is directly referring, we set up an intake appointment for our Office
MICHAEL STOEHR: And I'm sorry, does OBR or ODP have to recommend or do you take referrals from other sources.
JAMIE DILANNI: We haven't yet taken referrals from other sources. That is something that we're currently working on. OBR and Office of the Developmental Program has been a supporter of the CHOP Career
Path Program to really get us up and running.
MICHAEL STOEHR: And kind of related to that, a question came in. Are any of the programs funded through MA money or insurance or this may lead up through ODP and OBR?
JAMIE DILANNI: It's through the waivers through ODP and through OBR.
JAMIE DILANNI: All right. We are exploring other options for funding to expand the program and to find additional ways to fund and support young adults for Career Path.
MICHAEL STOEHR: Okay.
MICHAEL STOEHR: Okay. Great.
JAMIE DILANNI: Well l-- and for REACH, there is now -- REACH has an open community. It's just signing up and communicating with the REACH Coordinator to come to sessions.
MICHAEL STOEHR: Oh. Okay. So, the REACH Program, you don't -- you don't need an additional referral for that program, is that correct?
JAMIE DILANNI: No, not at all. That is a community-based, you know, just, you know either self-referral or somebody else referring that they have somebody that might be really good for one of the
workshops. And they can reach out to the REACH Coordinator through the email or Symme or I to get, you know, somebody the information needed to attend.
MICHAEL STOEHR: Great. Okay, Jamie, thank you so much. And with that, I am going to go ahead and turn this over to, finally, Dr. Pletcher from Children's Hospital. Jon, go ahead and slip up to your
slides and I know it's been a tough morning so, I'm glad you were able to join us.
MICHAEL STOEHR: Yes, thank you so much. Thanks Michael and thanks everybody for adjusting your schedules, for me, I'm having difficulty with Transitions. The first slide you can see the picture of our
Children's Hospital in Pittsburgh and that's where we work and I thought the focus -- it was good to hear the other talk because citing what's going on other state. Starting my talk, we'll focus a
little bit on some of the systems level and changes that are happening and how our Youth Development Program has contributed to that. So, you go to the slide on Emerging Young Adults, the focus of my
Transition really be on Emerging Young Adults, 18 to 26 years old. As one sociologist describes, this age group is being defined as having no children, no houses, steady income, by and large. But we
do know and there's emerging signs about being a critical case of time theories for brain development, particularly for this higher level of complex forms of thinking. And I think you're eluding some
of those with work place behavior and issues that come up like that. The complexity of work alone really -- if you move ahead for the next slide, that transition alone, the work is enough to give any
families past, but this is our Current Paradigm For Young Adult Health Care currently. So, you'll look at this age group and you look at where how the health care system can approach to this age
group in providing health services, Transition is essentially the paradigm and the key of any transition is transfer. They transfer from the Pediatric System to the Adult-Oriented System in health
care providers. And typically, there's a series of transfers to a number of the -- and adults who take care at Children's Hospital. Is there a Moving there--a specialist, sometimes there is therapist
and sometimes those are related to other issues that emerged as they do move in to the workplace and make other transitions. So, the next slide this kind of looks at this age period from the
perspective of an individual with a disability or a special health care need. And all of the systems relate at our key part of success and inclusion. And you can see it, there's a multiple
transitions and transfers that are happening during this time period. We are all familiar with this from 18 to 24, typically. And with each of those transitions whether it's through the education
system from free and appropriate Public Education to Secondary Ed whether it's Medical Systems, whether it's through housing and the semi-independent living situation of each independent living and
then so on, you can get public benefits and a little away through the twenties, by and large, and then occasionally there's a number of catch. An so, we know from the subway systems that gaps or
accidents happen and so, we know that there are, on the next slide, many poor outcomes. We are all familiar with these as well. It's associated with health care transition. So, I know a lot of folks
talk about this and I just move ahead since I don't have a lot of time. So, moving forward, like thinking about this age group and thinking about to help them developmentally and as I mentioned, the
brain is still developing and systems are still changing around them. It's really a time, unlike adolescence, it's a time of exploration and risk taking and developing identity. Young Adulthood
really is about applying and refining, coping skills, work skills, other skills that have been attained through their process of adolescence. And really, the key outcome are the key -- I'm sorry, the
key process of young adult would have gained work experience and skills at the same time forming long curve mutually beneficial relationships. And again having those multiple communities and multiple
contacts unless you're a part of whether it's a small community, or your family, your friends, different peer groups and so on. So, on the next slide, a support for a -- the way to support young
adults is really to support their emerging sense of self-determination, guiding and supporting. And any current young adult knows this, helping them frame and set shorter and longer term goals and
helping them to deal with failures and turn these into successes. Learning how to manage financial resources, balancing the, you know, what strictly becomes the -- a valuable resources which is a
time for time for young adults that they have to balance work and family time and fun time and so on. So, again, there's a lot of change and really you want to be preparing yourself for
opportunities. So, shifting back to health care systems, you can see that we're familiar with this divide or these differences in our culture of pediatrics and adult health care whether it's family
oriented or interdisciplinary working together. We have longer visits with our patients. We're more willing to guide and direct and sometimes you will make decisions for families bringing up
particularly when they're in the hospital, but even longer term and right to reaching physicians. And so really, we're looking for at, here, is a very low tolerance for adherence of the pediatric --
for non adherence in the pediatric systems. In our -- in our current paradigm is the Medical Home and you can see how different it is in the Adult System and just to summarize I think and, you know,
I'll skip ahead -- there's something, you know, the critical difference between the Pediatric and Adult Health Care System is in the Adult Health Care System, the expectation is that decision making,
the process for making decisions has already been worked out, perhaps when individuals capable of making their own decisions, perhaps they rely on family members but basically, the system has been --
has been worked out whereas in Pediatrics, we can work with multiple systems. We can work with families, we can work with individuals, and we're making decisions and so on. And you know, this rely on
self-determination really thinks about a little bit on what goes into making a self-determined decisions, a feeling the confidence, a feeling a connectedness that you're making this decision and it's
going to be an important decision for your important relationships. And in a sense of the time is you're doing it for yourself and that you have a reason for doing it. And so, really, it's more of
balancing the internal and external influences. If you look at the slide on Shared Decision Making -- so, and you know, this is really, they stated that in providing health care to young adults,
really supporting the Shared Decision-Making Process, so that the individual can move from being kind of a bystander to being more of an active participant in contributing ideas and thoughts to
collaborating more and thinking about information and health care decisions to eventually driving it. And I think that is the key point when the individual is driving his decisions. That's the key
point of when you're ready for the Adult Health Care System. So, if you skip forward to change, I'll talk a little bit about our Youth Development Program. And Michael, how long do we have to talk?
Can you hear me? Hello? Okay.
MICHAEL STOEHR: I'm here, Jon. Yup. You're good. Taking what...
DR. JONATHAN PLETCHER: Okay.
MICHAEL STOEHR: ...we need--we are recording this so, if you want to talk -- just mentioned Affordable Care Act and going to change, you're good for time. If you have the time to do it.
DR. JONATHAN PLETCHER: Oh, terrific. Okay. Okay. Thank you. I apologize I am -- there was talking and the line dropped.
MICHAEL STOEHR: Yeah, yeah.
DR. JONATHAN PLETCHER: So, okay. So this -- thinking about, you know, the slide on the Affordable Care Act really is affecting a lot of policy as we know and then one of the first provisions is being
able to be on your parents' health insurance, you're 26, really acknowledging that it's not reasonable and the facts that young adults are age group that is mostly likely be uninsured. And that
relates the problems with transition to this whole health care. So change, aims for the Children's Hospital Advisory Network for guidance empowerment and we started this about a year and a half ago
and we're in collaboration with Josie Badger, spokeswoman of the Pennsylvania Youth Leadership Network and really kind of sat down with the number of the hospital leaders who were thinking a lot
about Transition and have a good better jobs supporting young adults and the young adult leaders. And we came up with this model of creating and providing opportunities, much like the REACH model of
having an open events where individuals could come and interact and more on peer connections and there's a bit of a curriculum -- curricular components to it but both of that opportunities for the
network and have opportunities to find ways to chase themselves as they take up from managing on healthcare decisions. At the same time as an adviser of good model, so we're providing a number of
different resources and ways of providing guidelines and feedbacks to it's -- whether it's a clinical group or whether it's a clinical program. Right now we're focused on our launch of our patient
portal, the ICHP patient portal and I'm glad to say as I was walk in through the hospital rushing up via the Webinars, it's all on our screens -- the screen that came up a team, take charge of your
health, to see your patient portal and that was the feedback directly from our Youth group all about how that's really provide the good guidance, just the power and it also see the patient portals
and opportunity for sure decision making. So they really are contributing a lot and including the idea and perhaps we shouldn't focus so much on the transfer for young adults and really help focused
on managing with decision making process and let the youth kind of guide the transfer process but maybe to occur in the mid 20s. Maybe even in the late 20s. So as we're insuring system's change, we
were hoping that this isn't change to further support and be responsive to individuals as they change to self-determine model of healthcare. So the design, the innovative design at the next slides,
we are -- that we are developing a conjunction, there's an array of that allies, professionals around the city and now they get parents' healthcare providers along with young adults who really had
formed and discussed the issues that come out of a -- of the young adult discussions. And really, we're not looking at a specific model of health or disability or diagnosis. It's a great diagnostic
and we have -- mental help is also on it, physical help really it's hard to -- hard to discern. I'm really hoping to align hospital health systems, community systems through learning collaborate
model, so many other things including some of the ways we're going to educate young adults and families about the patient portal are [inaudible] follow of QI of process. So the Vision is the next
slide. CHANGE work towards a culture that values youth empowerment and recognizes the importance of high quality supports for healthcare transition. And the Mission is the next slide, there's two
very young adults at an event last spring, a reception that we had. Mark and Katherine had their performances and talks and perhaps the most powerful way that our youth kind of make a difference
whether it's in the community or urban hospitals through their public speaking and through their willingness to come and tell their story. And when you talk about this critical moments, when they
have this [inaudible] moments you know, "I need to -- I need to own this, I need to take charge of this. I need to really see this as an opportunity and not necessarily something that's going to --
going to hold me back." So there's our mission. The next slide is the CHANGE universe were really the youth who are going to the process, youth generally targeting age range 16 to 26, I know we have
some 28 year old and really we don't check ideas or anything like that or really the youth who are trying to engage primarily through our monthly social events and through a number of events that we
work in collaboration [inaudible] of groups in the community. And then in the universal round, the youth are the change where the young adult for them to receive stipends and or for the leadership
training opportunities. Our division of analyst in medicine, our LEND program here in Pittsburgh. I mentioned our allies we are all kind of working together to support the youth. So the next slide
really kind of highlights how CHANGE works operationally for social meets -- board meetings, transition GPS with the paradigm we're using for our toolkits hoping to do something that's really not
checklist-oriented or layer but something that's really kind of a Wiki of information through a variety of different media and modes of communication where you can really search by their issues,
search by number of ways of looking at themselves but to find a critical piece of information they need, a resource or agencies, that's going to take years to build up. We're starting to build it
right now, I mentioned the public speaking in those allies and then we also have used electronics and media wise to engage youth to our places like Erie, Johnstown, to be able to -- so at last they
can participate and hear what we are talking about -- and so we're working on that technology, we definitely have some [inaudible] some sort of -- where outlying areas from Pittsburgh. On the next
slide, this is a little bit about what we've been working on so far, what we've done. So we're looking -- Youth-centered as well as system-centered outcome but the patient-driven tool is the next
slide. It really -- we hope to provide supports for the youth that starts very early, even in older childhood and talks about absolute information and really process progressive transfer, decision
making for parent, to the youth and looking for the shared decision making opportunities, collaborate with healthcare providers and the allies and per systems and really, really engage youth to
develop [inaudible] information through their meaningful works. So, the videos and the products that they've created, the GPS will constantly to be recreated and re-updated and the individuals will
be doing that will be the young adults -- will be developing those [inaudible] it's been an ongoing process. The next slide highlights what we're looking at for youth centered outcomes and so we are
beginning to do some more formal kind of questionnaires and surveys but think about the parents as well of the transition for being a parent of a teenager and being the manager of healthcare, to
being a parent of a young adult and being a support. So, some of the system outcomes of the next slide I mentioned that my CHP patient portal and QI projects and really, really by a large changing
attitudes about the approach of the young adults. I hear this from the residence all the time that more and more is becoming, you know, not, "Why are you here at the door or we don't do that or take
care of that at the door," but really, possibly thinking about what can we offer to this young adult and help them to connect them to that hopefully medical home who will help support them through
their tradition process. And the last slide really, this is something that I've learned a lot of from listening to the young adults and to get involved with Michael in the Youth Leadership Network.
I'm really thinking about that is -- this idea of economy just depends, it's really tied into civil rights and really this idea that paternalism that work so well and so it's necessary for children
and families if they adjust to life with the critic health need. That's really true that their right to make their own decisions such as what doctor do I see, where when I get healthcare, where were
going to live now really have to have to be with individuals who can't be guided by diagnosis or disability. And the last slide is really this idea that -- the idea of transition independence is
really kind of a fallacy, none of us are truly independent but the idea to help build connections and create opportunities is kind of take connections towards the state of interdependence which is
really the only sustainable escape. So thank you, I really appreciated your time going over in all the adjustments to the schedule.
MICHAEL STOEHR: No problem, Jonathan. Thank you for hanging in there and joining us today. A question just came in, somebody is interested about connecting with CHANGE or if you have a used young
adult address it, how would they go about doing that?
DR. JONATHAN PLETCHER: Well, I -- well, for my email address and we will definitely engage by inviting them in the social events, my address is my name firstname.lastname@example.org.
MICHAEL STOEHR: Okay, great. And another question came in, what is the proposed outcome for the transition GPS project?
DR. JONATHAN PLETCHER: Well, I mean I think it's -- the outcome is really the -- what the youth benefits to the process of creating the tools and various parts of the GPS, I mean, we're really seeing
as a -- you could see it as the, you know like a brick building where brick by brick and each brick will be -- will be contributed on youthful game skills and hopefully a feeling of competency and
accomplishment as we continue to improve. We're very interested in recreating things that are really well-done and that are already out there but really linking and creating and a way to link
resources whether it's a local community resource or a product that's available online in Pennsylvania health department checklist. So we don't want to recreate any of those things, we really try to
help youth access all of the vital information that's out there already a little more effective with.
MICHAEL STOEHR: Great, thank you. And I'm going to go ahead and put up Jonathan's email address. This is kind of -- his contact information and then his email address for folks, if you're interested,
give me one second, let me do it and getting pop that in -- oh, goodness, hang on one second. Let's make sure you can see it. There you go. If you are interested in more information about the CHANGE
project of the other information that Jonathan was talking about, that is his email at The Children's Hospital in Pittsburgh. Okay. Your information today [inaudible] and I am going to now move and
talk about some of the other resources that are available in the last section of today's presentation, so just give me one section -- second. And let me move down to our resources. We did talk a
little bit about the secondary transition website, secondary transition.org. while we were on the call and I know [inaudible] had sent out this resource that Mary Mazzoni has shared for us. Mary is
one of the IU Transition Consultants in the state. This is from the office himself of Advocacy Network and this information, a policy break regarding healthcare transition for you along with
additional information that is more specific to individuals on the autism spectrum. So just as a note that that resources is existing. We will be uploading that also to the secondary transition.org
site and that will be added, it's not on that site currently but we will be adding it. I also wanted to mention just real quickly -- and let me go back to the secondary transition.org site. We had a
couple of questions that came in regarding the transition healthcare checklist and I know a number of folks have used the transition to adult living guide. I'm not sure if everyone has so, let me go
ahead and open it up here for you. I'm taking you just through the steps of where you can locate it, you can also find this directly linked onto the secondary transition.org site. The question came
in about, when one would use the actual guide as a document or as a resource and really, you know, you could start utilizing this resource at a younger age, middle school age but at least by age of
12 or 13. I think it would make sense to you. The section of the guide that the checklist part exists is here and that's what I'm pulling up and this is the part that is a writable PDF. And
basically, it's a way of accessing, where is that young person as far as their skill base areas. So for example in this self awareness case, this was designed to be utilized in conjunction with other
planning documents that exist out there, so if the individual does receive services through the Department of Education as an individual with the disability and has an IEP, this would be information
for that family, that young person the other individuals working with that young person to utilize in developing that young person's program for that school year or that IEP. Other folks have used
this as part of their planning if they receive services through hospitalize with disabilities and they're looking at developing their support plan they have used this to help in guiding that. So it
is something that could be used younger really with young folks that are 11 or 12 but I would suggest at least by 14 utilizing that tool. Okay. I don't see any other questions. I'm looking back to
see if anyone does, if you do please go ahead and type those now, with that, I'm going to just remind folks that we have a number of additional Webinars coming up in the series. Our next session is
on Labor Laws, it's going to be presented in conjunction with the folks from the Office [inaudible] Rehabilitation, OBR. And then coming up, close behind that in January on the 22nd is our next
Webinar which is going to focus on using young adults who are deaf or hearing impaired and looking at specific transition and issues regarding those individuals. I want to thank you all for joining
us today. Please remember that this Webinar is being recorded, we will be posting it to the PaTTAN website that should be available in about four to six weeks. We -- it will be captioned and posted
along with the handouts. Again, I want to thank everybody for joining us today and a special thank you to our presenters from Medical Home, The Children's Hospital of Philadelphia, The Children's
Hospital of Pittsburgh as well as the Department of Health. Thank you and have a great rest of the day.