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Partnering to make services easier to use for Latino families with CYSHCN: An Example from Pennsylvania

May 9, 2012Welcome everybody. My name is Myra and I work at the National Center for Ease of Use of Community-Based Services. But before we start, I want to go over some logistics. The audio is being started, so you may hear a couple of pops and a couple of noises, but your audio should buffer right back in. Just so you know, there is a box under bottom left where you can let us know if you're having any technical issues, and also right below the slide presentation, you're going to see an area where we encourage you to start writing any questions that you may have for our speakers. Today we are hosting a webinar called Partnering to Make Services Easier to Use for Latino Families with Children with Special Health Care Needs: Focusing on the PA Experience. On our lobby slides, you will see we are doing a small poll to find out what organizations folks are from, who is from organizations and also what folks thought might be barriers to ease of use of services. We will be going back to that in one second. While we are getting that back up, I'm just going to go through and let people know who our presenters are today, and please let us know if you are having any difficulty with audio or with the slides.

Our presenters today are Dr. Diego Chaves Gnecco, who is a developmental behavioral pediatrician and he founded the first pediatric bilingual bicultural clinic in southwestern Pennsylvania called SALUD PARA NINOS. Our second speaker is Dr. Renee Turchi and she is the medical director of the Educating Practices and Community Integrative Care Program, which is a statewide medical home program for pediatric practices in the Commonwealth of Pennsylvania. We also have Emilio Pacheco, who is a Latino parent with many years of experience in the disability community. He is the proud parent of Joel well, a young man with intellectual disabilities, who also has significant special health-care needs. Emilio works at Vision for EQuality as a senior manager of programs, and has a training unit that specializes in teaching Latinos how to navigate through the health-care system. We are also incredibly lucky to have as part of our audience, we have the D70 grantees and we also have our program officer, Lynda Honberg who works at the Maternal and Child health Bureau in the Division of Services for Children with special health needs on the call today. So Linda, if you have a few remarks you would like to say.

On behalf of the bureau, I would like to welcome all of you to this webinar. I think we all know the importance of easy to use services as a parent. I certainly understand the difficulty that families have in accessing community-based services. For Latino children, our national survey indicates that it is even more difficult. Only 59.2% of Latino families indicated that services are easy to use compared to almost 68% of their white counterparts. So this is a really critical webinar and I am pleased that so many of our grantees and partners could be on

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May 9, 2012this call today and we do hope you will learn some important strategies that you will be able to apply to your state and your community.

Some learning objectives are to increase the awareness and knowledge of the use of services of children with special health-care needs, particularly in Pennsylvania. And also to explore how the presenting organizations can serve as a model for your state organization and to examine some specific examples of partnerships and activities and lessons learned from the presenters today. To set the context a little bit before we start, we want to talk briefly about the Pennsylvania context. What we did to prepare for the webinar is that we looked at the 2009/2010 national survey of children with special health-care needs. What we did was we looked specifically at indicator five which is the ease-of-use of community-based services. What we found was that for Pennsylvania about 59% of Latino families said services were easy to use, e services are easy to use, and this is very similar to the national average for Latinos on ease-of-use. However it is significantly lower than for non-Latino whites, which is 71% for Pennsylvania, found services easy to use and nationally it was 68%. So with the new series of questions on the survey, we were able to also drill down and see what are some of the specific difficulties or delays that Latino parents in Pennsylvania indicated were a real challenge for them. Again for Pennsylvania, Latino respondents on the survey said that waiting list and eligibility criteria were particular challenges for them. So our speakers today have worked on a variety of these factors and they will explain some of the ways that make services easier to use for Latino families. For now I will pass on to Dr. Chaves Gnecco to talk about SALUD PARA NINOS.

Thank you Myra. I want to thank everyone for being part of this webinar as well as the organizers for inviting me. I'm going to be talking about SALUD PARA NINOS, Health for the Children, and as a matter of fact it is an acronym that is it for students, residents, faculty, and Latinos united against health disparities. We’re now celebrating 10 years of service in the community. Today we're going to talk about the program aims, some methods and descriptions of our program and I'm going to share with you some results and conclusions and maybe some future initiatives and I hope this is helpful for all of you listening to us today. Some of the aims of the program include to reduce health disparities, to combat social isolation, to partner with community agencies, to permit systematic data collection, and to create an ideal environment for a developmental screening. So as I mentioned before, the program was created 10 years ago as a medical home for Latino children and families. It is the first bilingual, bicultural pediatric competent clinic in southwestern Pennsylvania. We provide traditional primary care services in

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May 9, 2012three different locations, at Children’s Hospital Pittsburgh, in our community clinic, the primary care center, and the location in one of the neighborhoods in the city where we provide services to a place called the Birmingham clinic and to our mobile unit at CHP, the Ronald McDonald Care Mobile. One of our goals is to increase prevention and empower the community to address its own health.

The clinic as I mentioned before has different settings. We have three weekly clinics on Tuesday mornings, Thursday evenings, and Friday mornings. This clinic is staffed by Spanish-speaking physicians and nurses staff and volunteers. We also go once a month to one of our neighborhoods on the south side of Pittsburgh, the second Saturday of the month. There we provide free care. Patients don’t need appointments or insurance, they just need to show up. That location, we partner with different organizations including something that is called SALUD, which is our medical student initiative program from the University of Pittsburgh, that is called the program for underserved populations. We also partner with the Salvation Army and the AmeriCorps members and volunteers.

We also use the CHP Ronald McDonald mobile care unit, which was donated to the hospital in 2001. It is a 40-foot long unit, and helps us to provide services in the free clinic at the Birmingham clinic. It helps us increase room availability as well as help us to track medical records.

We also provide some community services. As part of this we have helped organize committee fairs. At these fairs we promote healthy habits and ongoing programs. We distribute health information and give presentations about current topics such as childcare, obesity, services for children with special needs, etc. We are also in the past have organized CPR classes. We have done a few of these and had a lot of success and a lot of welcome from the community. We have literacy programs. We started many years ago as a local initiative, called Healthy Stories and most recently we joined the National Initiative, Reach Out and Read. We are part of the board members for an initiative that is specifically oriented for Latino families and children that is called Reading Together. As part of this initiative we bring books to family and children. They are bilingual books. We look for bicultural books and our goal is to mainly initiate early literacy in kids, but also one thing we have found it gets parents motivated to learn English. When I talk about these issues, I'm the first to recognize if you want to live in the United States you need to speak English and ideally you need to also keep your Spanish and this is a good way to encourage families to become bilingual.

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May 9, 2012

We have partnered, as I mentioned with different organizations, and an important partner for us has been the American Academy of Pediatrics and in particular, the Pennsylvania Chapter. With them, we have developed different materials and in the picture you see some bookmarks and posters that we made a couple of years ago intended for families to keep their immunizations rate at a high level and up to date. The reason I bring this example is because it shows not only importance of having bilingual and translated materials, but also because the materials have to be bicultural.

As you can see the English version, we are emphasizing sports that are more common in the mainstream community such as baseball with the Pirates and the Reds, and football with the Steelers. In the Latino bookmark and poster, we emphasized for example the importance of the Quinceañera and soccer.

We have a Spanish phone line. We were the first local Spanish phone line in the area where families can call us and get help to make appointments and they can get medical advice through this line.

We also have put emphasis on car safety and it is an initiative that we have taken on with the help of the American Academy of Pediatrics Pennsylvania Chapter and a group called TECHS. We have worked with TECHS for about ten years and in this picture you can see how we try to do things together. You see the girl not only getting her car seat checked but also the book next to her as part of the literacy program.

So now I'm going to share some of the results of this initiative. We started the clinic in 2002 and since then we have grown. We were close to 900 patients and by the end of this year we will have close to 950 patients enrolled in our program. Since we began this program, we are having on average about 1000 visits per year. More than 100 children have been assisted in obtaining health insurance. We partner with a local organization, the Consumer Health Coalition. We screen for eligibility in the free clinic for health insurance; in particular, federal and state funded health insurance programs such as Medicaid or the state health insurance programs, in PA called CHIP. If the families qualify for these programs, we help them apply. One of the families we started seeing in our local clinic, I have to warn you that unfortunately it is not a one-way street. A lot of these families actually sometimes lose their health insurance and we see them back again in the free clinic. Also in the free clinic we have a child specialty clinic since the beginning of our program.

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May 9, 2012In regards to car seat checks, we have organized 16 events and through these events we have checked 429 car seats and 210 have been replaced at no cost to the families. A couple of years ago one of our volunteers became the first bilingual bicultural certified technician in car seats. It is hard when you're working in prevention to show how what you're doing to make a difference but I'd like to share the story with you. Back in 2005 we had this Mexican-American family who had come to our Latino car seat checks and on Sunday December 18, 2005, they were driving around 2pm on a Sunday going to a local mall for Christmas shopping. Everybody in the car of the Mexican family, which is the minivan in the picture, was properly restrained. They were using their seatbelts and the kids were in their car seats and they were not driving at high speed, I think it was 25 or 35 mph. In the meantime in the white car, two people were running away from the police. They were not wearing seat belts or restraints and they hit the minivan. The minivan was totaled, and the passenger in the white car ended up dying. The driver in the white car ended up going to an intensive care unit and from there went to jail charged and was charged with homicide. The family in the minivan, the Mexican family had attended our car seat checks. They were properly restrained. They went to the hospital and were checked out. They didn’t have scratches, didn’t have any lacerations or fractures and were discharged within hours of the accident. And this has been recognized some of the impacts we had had through our prevention events.

Now I'm going to share briefly how we have helped patients with special needs throughout these years. I have changed the names for privacy issues. The first one I want to share with you, this is Maria. We met her when she was about 11 years old. She was diagnosed with cerebral palsy and at that time she was not walking. She did not have health insurance. When we met her she was traveling about two hours for basic care at a free Shriner’s Hospital. And something as basic as having special license plates for the car to park, they didn’t have it. Through our work we were able to ensure she got health insurance. We helped them get special parking for the car and she actually was seen by a specialist at the hospital and she had a baclofen pump placed. We did some home visits through our LEND interdisciplinary team. And the last time I saw her, we were celebrating her Quinceañera and she was walking and dancing and doing much better.

The second case, her name is Martha. Before we met her, Martha was at the well baby nursery and she was having some seizures. The mother was observing but was having a hard time communicating with the nurses. It took 48 hours for the nurses to realize what she was having and for the baby to be transferred to the NICU. It was found that the baby had a stroke and hemi-

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May 9, 2012paresis. We met her at the time she was at the NICU. We helped with inpatient and outpatient care coordination. We provided linguistic and culturally competent care and referred her to a local early intervention program and throughout that time she was able to go for her anticonvulsant medication and now she is completely recovered. She has her motor function and no sequelae from her stroke.

The last case is Guadalupe is a 10 year old girl. At the time that we met her, she had autism and her mother was very eager to advocate for her daughter and for her community, but she had made unsuccessful attempts to join local advocacy groups, in particular, among other things, the linguistic and cultural barriers. Through our help she was able to connect to a training grant for an early intervention specialist and she helped create the first advocacy group for Hispanic parents of children with special needs in our region.

So in conclusion, there is a need for culturally and linguistically competent health care for Latino children and when I talk about this I will say it is not only for Latino children but for all children in our country and around the world. A lot of the other times, and want to put special emphasis on this, there is no need for new resources. Most of the services and resources are in place and they just need to be connected. And as I have shown to you, a lot of time people worry about extra expenses and costs, but through the services, people save money and in the long term, they benefit.

Our future initiative, we would like to increase access to health insurance programs and to personal stuff in our programs. We want to improve our systematic data collection and are moving to electronic medical records now. We want to increase and improve developmental screening by improving access and improving systematic data collection and we are looking forward to continue looking for prevention and promotion and maybe some research initiatives over the next ten years. With that I want to thank everyone for listening to me and I'm going to pass this to Dr. Turchi.

Thank you very much. This is Dr. Renee Turchi and again I want to thank everyone for inviting us today to be here on this call. What I'm going to focus on today is building on what Dr. Diego talked about and I'm going to focus on our experience with Pennsylvania with families with special health care needs and the Pennsylvania experience. So really our work is predicated on the medical home and the medical home is the standard of care.

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May 9, 2012I apologize. The medical home is the standard of care for all children and we very much believe that and that really fosters and informs our work. As was mentioned earlier in the background slide, there is certainly a disparity of Latino families with children with special health care needs nationally. And certainly we see that disparity and access to services comes through in Pennsylvania. We certainly know in certain areas of Pennsylvania there are larger percentage of Latino families for kids with health care needs.

The work that we have been in Pennsylvania that I’m going to talk about briefly is looking at our statewide medical home work and then I’m going to talk a little about some of my work in practice. The first slide you see there is the EPIC IC Medical Home Initiative. That is a medical home statewide program that is housed in the American Academy of Pediatrics PA Chapter office, funded by our Title V PA Department of Health, and formerly by MCHB.

This program really focuses on working with pediatric practices at the practice level to foster and operationalize that medical home concept that Dr. Chaves already alluded earlier in this presentation. Our mission statement, as you can see is to enhance the quality of life for children and youth with special health care needs, really focusing on that partnership with the families as the central care givers for their children and really looking at community-based care coordination, communication and ultimately our goal is to foster the highest quality primary care and health delivery.

As you can see on the next slide here, this is a map of Pennsylvania. And the various dots show across Pennsylvania represent the practices that our statewide medical home program has worked with. We have been in existence for about nine years and the different colored dots represent various stages of medical home adaptation and implementation that the practices have achieved. Our team is housed at the American Academy of Pediatrics, and we focus a lot on practice coaching and working on things like care coordination, registry development, really thinking about family centered care. How to not just engage parent partners, but how do you really bring them to the table and work with them and have them be equal partners in your practice and foster their voice. Pennsylvania, like many other commonwealths and states throughout our nation, it is an eclectic commonwealth. We have practices that represent various sizes and types.

What do our practices do? As I mentioned we have a team that works with them and our team including myself, and any others, and several pediatric

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May 9, 2012advisors and advisory boards. We work together to identify quality improvement teleconferences. We host these teleconferences monthly and select those topics based on really hearing from families in our practices in terms of what is identified as a particular need. At times we will have those conferences focus on a resource in PA. We recently had for example a call where we had our PA Epilepsy Foundation and chapter give a talk on services they provide throughout the whole commonwealth and that was very germane to both practices and families.

At times those quality improvement teleconferences will focus on things like meaningful use of electronic health records that might be more relevant to practice. Right now we are planning one, we’re having some issues here in Pennsylvania with Medicaid and our secondary Medicaid insurance. There is soon going to be a sliding scale implemented for families, so we are partnering with our Department of Welfare to plan a teleconference to have families and practices understand what the implications of that are and what is it going to mean etc. So that is our teleconferences.

We also host biannual conferences. Those conferences include a variety of topics. We did have one two years ago that focused on cultural competency and at the conference we did have folks from the Maternal Child and Health Bureau come and very importantly, folks from the National Center for Cultural Competency. The team came out and they were instrumental in helping us not only plan the conference but roll that out. That conference really allowed both our practices and families to engage in some self-reflection on what they are doing in their practice, parent partners and what kind of things can we do a little better and moving forward.

As a medical home team do a variety of things around education. As I mentioned earlier we work with our practices on identifying CSHCN and thinking about registries. Right now we are working on things like the NCQA, which is the National Committee for Quality Assurance, by the certifying medical homes and working with practices, but also one of the things you want to make sure we don't lose in all of this is the importance of working with parent partners and as our practices seek to become certified as “medical homes,” which ultimately can benefit them from a fiscal standpoint, and help the processes get in place, but really our team has been very cognizant of the components of family centered care, which often require an on the ground connection.

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May 9, 2012We look at things like coding, time management, and as I mentioned we have a variety of hot topics that we have conferences and talks on. Right now we are looking at transition. We also did have a conference and have had several talks on family centered care, where we have had tools provided and parent partners and families talk. The one thing before going to the next slide that I wanted to mention that is thinking about tangible things for folks on this call that are interested in what can I do and take from this, is we have been planning these biannual meetings that are statewide conferences. We just had one on asthma about a week ago. One of the things that we had done that we think is really important as you are planning meetings around a variety of topics, is no matter what the topic is whether this cultural competency or asthma, brain injuries, one of our agenda items is always to have a parent or consumer panel.

Really interestingly and appropriately the feedback that we’ve gotten on our conference has always without a doubt, for that parent/consumer panel has always received the highest remarks. So essentially what we do and I would encourage you to think about this as you are planning your conferences, is to identify, in our case, our practice network, families that have a child with asthma or a traumatic brain injury and we create a panel and as my team likes to say, we conduct the panel Oprah style, where we have a facilitator and we have a series of questions that address topics like what has worked well, what have been some barriers, and what are some things you would like to have seen done differently. But we have seen time and time again at our conferences and most recent asthma conference had almost 200 attendees, that at those parent panel sessions that have been many “aha” moments. We are really hearing from consumers and families, not only reminds us why we are doing this work, but also bring up some great points that often many of us have not thought about and maybe helps us inspire change in the work that we do. So I really want to encourage you as a tangible nugget of advice to think about that was you are planning meetings, talks and conferences.

I have mentioned in the previous slide the cultural competency conference. I just want to spend a brief moment and tell you a little more about that. The planning committee did include folks from the National Center for Cultural Competency, as well as Mr. Pacheco, a dear friend, who is going to talk to you as soon as I’m done here and many other folks across Pennsylvania that were engaged and interested in this work. As I mentioned, we had the Maternal Child Health Bureau representation, Diane Denboba came out and they helped

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May 9, 2012us talk to our attendees about what is the MCHB mission and message with respect to cultural competency.

Another thing we did at the conference that is an important thing to think about as you are doing this type of work, is to have breakout session so that not only are people hearing lectures from people, but they are rolling up their sleeves and saying to themselves, how can I create an action plan? What can I do in my office next Tuesday? How can I engage with a cultural broker? Those kinds of things.

The other thing I would encourage which is a very tangible tool to think about using, particularly if you work with healthcare providers, and actually the National Center for Cultural Competency on their website has other self-assessment tools for agencies that I’m sure most of you are familiar with. But the provider’s self-assessment is a tool that has been very helpful for us. The one we’ve used has been very focused on healthcare providers and we are actually using it in our transition work right now where we essentially, if you have done any of the NCC tools you know they are online. They're very user-friendly and appropriate from a literacy standpoint and that allows folks to answer questions candidly and help them think about a plan for moving forward and how it is going to take some of that information and help them think about where they are and where they want to go.

I want to shift gears a little bit now and talk about that statewide work. I want to shift gears and talk a little bit about practice. I'm a pediatrician and I do practice in the northern Philadelphia area. I am privileged to serve the community that we have in northern Philadelphia. Our community, actually I met Mr. Pacheco many years ago, when his son was about six years old. Mr. Pacheco and his family at the time represented many of the families that we serve at St. Christopher's. We have a large Puerto Rican immigrant community that surrounds northern Philadelphia and in my particular practice we have about 40% of our families that speak Spanish as their first language.

As such and being patient and family centered, we really need to think about advocating in practice. We certainly, as Dr. Chaves mentioned earlier, he’s out in Pittsburgh, they're certainly not just in northern Philadelphia or Pittsburgh, there are pockets of Latino families and communities all over Pennsylvania as well as in your states. So really thinking about how one can advocate in practice and what are some of the lessons learned.

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May 9, 2012One of the things at St. Christopher’s Hospital for Children, where I am, that I am a big fan of, a very pragmatic sort of tangible tool are the CyraCom phones. Prior to using CyraCom phones, which I’ll explain what they are in a minute, we had had access to the AT & T language line, which can be very helpful and the quality of interpreters has been great. When you think about a patient visit I personally have found them to be difficult because if you're on a speakerphone you're both talking into this one phone, and in terms of the flow of the visit, as much as one can try to really focus on the family and patient, having that sort of back way and then conversation proved to be pretty difficult. Many of our providers expressed this to the administration, so we switched over to these CyraCom phones, and essentially what they are, I tried to get a photo to share with you, but I didn’t have consent from the family. If you can envision myself and a patient both sitting face-to-face in an exam room and both of us holding what look like cordless phones. They are cordless and essentially what can happens in practice that I really very much enjoy is that you can pick up the CyraCom phone and you dial and talk to an operator, so again like the language line, you can request whatever language that you want, it is not just Spanish, and they connect you to someone and I am sitting there with the family and we are both holding the cordless phone to our ears and I’m able to look at that family and patient and engage in conversation and as I'm speaking to them in my receiver, they are hearing translation real-time in their ear piece. So we are really able to have a dialogue and in my experience and professional opinion, these phones are a little more expensive but have I found them to really help foster the physician patient relationship and when thinking about how sometimes as much as one tries to be cognizant of that, if you do not have those phones it can be difficult.

I also would really like to emphasize the role of cultural brokers. Dr. Chaves mentioned that his community partners are instrumental. We have found that and Mr. Pacheco is going to talk a bit about our partnerships, and really understanding your community and working with cultural brokers and thinking about getting their feedback and partnering on events, which I’ll talk about in a minute. Mr. Pacheco several years ago started to do home assessments for families of children with disabilities, where our team would work with a medical equipment company and go out to a home and assess what equipment might be needed for a child that might have physical limitations. And actually Mr. Pacheco has come and accompanied my team on more than one, where he came out as an interpreter and really helped to advocate for that family. So thinking about those examples of community partners and cultural brokers are really important.

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May 9, 2012I also would like to highlight the importance of resources for families. Dr. Chaves was talking about the books from Reach Out and Read, and I think about the American Academy of Pediatrics that offers many of their informational brochures in both English and Spanish as well is if you call many of the various agencies often have resources in Spanish and they may not be advertised, but it is always worth a call to find that out.

I wanted to highlight an example of a partnership that really came out of the community partnerships of cultural brokers. As I mentioned earlier, we partnered with Vision for EQuality and Mr. Pacheco’s group where we actually hosted an autism conference for families at St. Christopher’s Hospital in northern Philadelphia. We decided that we wanted to really focus on doing education on autism, but also that was culturally appropriate and really geared towards the Latino community. We not only provided resources in Spanish, but really what we ultimately ended up doing, was getting a Spanish speaker and did the entire conference in Spanish. We had English translation for the folks that were there that only spoke English, were the ones who had to wear the headset. It was a really great cultural experience to have the larger projector screen be in Spanish and have those families that were there, be able to participate fully without any technical problems.

We did plan this conference with a variety of community partners. As I mentioned, Vision for EQuality, we had families representation, we had the Center for Autism Research, Children's Hospital of Philadelphia, our hospital, Asert, state participation with the state Bureau of Autism Services. So again a take-home point here is just thinking about a planning committee, and truthfully what we did was have a series of conference calls. It doesn’t have to be something that costs you money or even brings people together face-to-face. Now with technology if you’re thinking about planning these events, engaging with families and really listening to what is needed out there is invaluable.

The other thing at this conference that I did mention was how we did the presentation, but the other thing we did that I thought was really valuable and got great feedback on was that we had a resource fair during the lunch break and during the break for the day where all the resources that we invited that had information on autism, the only way they could participate was if they had bilingual resources. And most of us sent people to man the tables who spoke Spanish. So again, families were really able to engage in a way and ask questions and engage in a way that was meaningful where they participated fully.

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May 9, 2012This slide here is an example of the flyer we created. Again we did this as a power point slide. We didn’t have any funding to get a graphic designer. But it served its purpose. We had an English and Spanish version. We had a student help us make a little brochure. And again I say all this to say you can do these things with wonderful partners. The Pacheco’s helped us with translation and you can do these things even if you do not have a huge budget to plan these events.

I would also say that I wanted to talk about the role of technology. I talked about that earlier. On our website for the statewide medical home program, you can see the green box there, that is something that we have down there with families if they are going on to our website, they can select their language and with Google translate they can get the website and some of those resources in their language of choice.

We also have a social networking site that you can access through a website listed in this presentation. We have a social networking site for families and anyone can use that, anyone can use that on this call, it is not password-protected. Essentially families can go on and create forums and if you do visit our social networking site for parents, you'll see that there are forums for parents and children that have autism, cerebral palsy. There is a forum for parents who speak Spanish. It is great to see that they're able to go into that forum and communicate in a way that is comfortable for them.

I mentioned resources and brochures. One of the other things I wanted to mention, some kernels and pearls, to think about ways in which you can accomplish some of these goals. A lesson learned in history is when we started partnering at St. Christopher's and at the statewide medical program to provide translation services for families, we ended up renting equipment and interpreters and we soon found it was incredible costly. So we ended up pooling our resources and in a variety of programs we each ended up buying a few of the headsets and transmitters, and then we were able to get translators to partner with cultural brokers and whenever we have large conferences if needed, we pool our resources. Within our little cohort of about three of us, we share our transition equipment. We found it is a much more cost-effective way to go about getting translation services at conferences rather than hiring an individual company with an interpreter at each event. I apologize for any of you that do that for a living, I want to support your business, but for us we really felt as though we wanted to have as much -- as possible and this is a way to allow us to accomplish that.

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May 9, 2012In closing, I wanted to highlight our medical home website, which I talked about, the parent and caregiver button there that takes you to that social networking site. We also have resources there and one can access the website. This is just a brief screenshot from our resources page. We have some resources that are statewide and national and we specifically have an area that has resources that are in Spanish that are posted that way so the families don't even have to use Google translate to access those resources.

This slide here is “Especially for Parents,” is what we call our social networking site and I encourage you to join the community. You can create your own forum from whatever state. We aren't Pennsylvania exclusive despite all the presenters on the call. We want to share our technology and resources.

I just want to close with saying the role of partnerships. I have here on the slide key partners. Certainly families and youth and patients, the pediatric practices who humble me on a daily basis with what they do. Certainly our Title V, PA Bureau of Family Health. We could not do any of this work without them and as I mentioned the National Center for Cultural Competency. The National AAP Got Transition Center, MCHB, our F2F here in PA, we work with Liz Healey at PEAL, has also been extremely valuable to us and community partners I have mentioned in this presentation. With that, thank you very much about I’ll pass this along to Mr. Pachceo.

Hello, how are you doing? When we took this picture, this is my family. This is my wife and our son, Joel. I look better in person. But when we took this picture, we are always reminded what the symbol you have here, is you see, when I take this picture and put it here, there is no limit for us. You see Joel doesn’t need a ramp to go to the sand and from now, from that part on, he needs what everybody else needs. A boat or whatever it is, so he gets to where everybody has to get. If you would see this, we came here 10 years ago, we had no English at all, no family, and my son today is on top of the world with the services. This is something we can really accomplish for everyone.

Vision for EQuality is an organization that advocates people with disability. They give us the opportunity to open a little project for the Latino families and now it is getting bigger and bigger. One of the things that I always said about cultural competence, we have to be very careful on that and I'm going to give you one example, my family. In order for you to put Joel in the OR for any procedures, he has to be perfect. He has so many complications that he has to be perfect. If you see 6 January, is a very important day like Christmas. [Inaudible] If you are going to make an appointment for Joel on the sixth of

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May 9, 2012January, they are going to say no. This family won’t take it because of cultural competence, but we will take it. We will take that. When you learn about cultural competence, you have to ask people too. We came to this country looking for better services for our son and that is what we are going to get no matter what. So unfortunately here, 6 of January is a regular day for you and a regular day for us, and that is the way we see it. Cultural competence is great, but we have to be careful how we use it.

The background is Latino is the largest minority in the United States. Hispanic families who do not speak Spanish, they are not receiving the services they need, and the system is not prepared to get the demand of Hispanics, even because they do not want to do it, even because of money that they cannot pay for it, whatever the reason is, they are not prepared to do this.

One of the things that we found when we tried to do these is that services are confusing for the people. They do not know where to go for help or if they are eligible or not. This is just for people who do not have children with special needs. Can you imagine when you have a child with special needs and you have to look for yourself and for your kids and you do not speak English in this country? Still very much under represented in terms of services response because we have experiences that when you develop a document in English or develop a program in English there has to be training and there has to be some kind of teaching people how to use it. But for Hispanic, you just translate it. You don’t develop a training for the Hispanic, so we feel underrepresented. Even when the services are given, when information is given too.

We have a problem here on how we can trust. Many of the people, Puerto Rico is fine, but the other populations coming from other countries have many issues with immigration. We don’t deal with immigration, we help the children. The children born here, they have the right to get the services and the only way they can trust people is talking to other parents. So what we do here is try to get the trust of the people by people bringing them to our activities, maybe go to their houses, we don't represent any government agencies. So they need to get the trust of the people who are trying to help them in order for you to attract these people.

These are the people we serve. All these people, you can see the needs, they are all using ventilators, other people have different needs like my son in the corner, he doesn’t use a ventilator, but he has a developmental and physical disability. All of these kids are living in the community, receiving the services that they need because they know the system. That is the only way you're going

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May 9, 2012to receive what you need. All these families know the system and we are celebrating here outside in the community because they receive the services that they need in the community. In order for us to do this, -- I'm sorry. We have to partner with other people…Vision for EQuality, the PEAL Center in Pittsburgh, the Pennsylvania Chapter of the American Academy of Pediatrics, the Department of Health, and EPIC with Dr. Turchi and the medical home. We altogether are trying to approach all of the needs, because one agency cannot do it all. It is very important for whoever is trying to do this, to make sure that you partner with other people because you can use other people’s ideas and even other people’s funding in order for you to reach the people. Additional partners that you need, the Department of Public Affairs, we are pushing for them to in order for them to release funding and keep us in the look, the Philadelphia County IDS, and this is just for funding.

People with disabilities are under the radar. People who do not speak English are under the people with disabilities. So at least we are trying to get in level of the people with disabilities so they can have the same. We can get the right with the people with disabilities when they grow up if we are in the same level. If we are still behind, we are never going to do that.

Who are we empowering? The Latino family who speak Spanish as their first language, they have children with special needs and family who are not receiving services. It is very important for you to know that at least in PA, all of these kids are entitled to the services that they need, the medical services they need, but they do not know. They are not receiving the services not because the services are not available, not because of the waiting list. It is because they do not know what services are available. You need to teach people what services are available for their kids and then take them by hand and look and get them in a place. For example, once I took a family to Dr. Turchi’s and Chaves’s clinic, I can leave them alone because I know they're going to be served better in their own language. So you need to identify the people. Teach them what services are available and grow and see these people are children and families to the place that you know they're going to be safe and then you can leave them alone. On their own.

Again, the language barrier is the biggest problem here, but more than that is again, they do not know what services are available for them or how to ask for the services. I have not seen yet a healthy choice, HMO, go to the people, go to the house of the people and say listen you have the right to this, you have the right to that, let me give you this. They do not do that here. So it is important for us to tell the people what is available, and that is what we do. Here at

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May 9, 2012Vision for EQuality, we do not do what Dr. Turchi and Dr. Chaves does because they are doctors. They are the ones who recommend the services. We are just empowering the people, show them what is available, where they can get and make sure that they get it.

The constraints are everyone knows funding, time, and again difficulty identifying families willing to participate, most of the time because they do not trust the system because they don't know. Most of the time they have even when you are legally here, sometime when you have a kid with disabilities they think that they're going to take away or they're going to think that you are a bad parent. It is a cultural issue here that we believe that we have to take care of our kids. It is we are embarrassed to go there to ask for this or that and that is what we need to change. If you come here we have to have whatever other people have.

This is what we do. We congregate with people and we get the people and everything that we take in these places are in Spanish. The presenters, material, everything is in Spanish to make it comfortable in their same environment. The outreach that we do, we do it for people that speak just Spanish.

In this collaboration like with Dr. Chaves, with Dr. Turchi, now families are trained. We trained people on how to navigate the system. Now they know what is available and are now able to receive the services. Now in PA, thanks to Dr. Turchi, we have the Department of Health calling us, translating documents in Spanish, they are aware of what they need to do, and they are aware that this population exists and they have an obligation to serve these people. We are often the path for that. It’s a lot to do, but we are often the path to do that here in PA.

We create the first support group for Latinos. This support group is just for people with families with children with special needs. It is unique in Philadelphia and I believe it is unique in Pennsylvania because it is just families who have children with special needs that speak just Spanish. Every event that we do has to be in Spanish, the presenter has to be in Spanish, everything is in Spanish for them to learn.

This is what Renee Turchi was talking about. We packed this room with the Hispanic population about autism. This was in Spanish. This is our big screen, everything was in Spanish, and this is the little screen for the English speakers. We didn’t do this on purpose. It is just one big screen and the event was for Hispanic and many people were upset because we did not do this in English,

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May 9, 2012and they always say how do you feel now? Because you know that is the way it is for us. We cannot get to these places, because everything is in English.

This is Jonathan. He has the case to be in an institution when he was a small boy just because mom did not know that she could receive services at home. They took him away from her and put him in an institution and when she called us, we found out and we had to almost rescue this guy from that institution. Jonathan is receiving services 16 hours a day today, 7 days a week. He is in a community and two weeks ago we celebrated his birthday in a block party in his house and here he is in one of Spanish outreach. He is in a community because mom knows now what is available for her. Again, services in Pennsylvania up to 21 are entitlement. You cannot go to a waiting list, you have to have the services, but you need to know what is available.

This was in Pittsburgh, this is what we do. All the information you see here is in Spanish, we get everything. We don't just help the kids, we help the whole family because sometimes you have needs for the parents, if you cannot read the gas, the electric, all of the services we can get, and we give it to them in their own language. Everything you see here was in Spanish. The biggest I have seen yet is Dr. Chaves, who made one outreach that he grow 1000 families with kids there that was amazing.

This is what we do. We are very proud to have what we call the real inclusion. This is Anna and Julio and they are saying in Spanish to the people who are in a room together with the people who speak English, listen to the same presenter. The only difference you notice is a headphone from them. Renee Turchi was the first one who put off on this and invited us for a conference for translation. From now on, everybody is getting [Inaudible]…they can look at the same presenter. You do not have divide people anymore with Spanish in one room and English in a separate room. It is the real inclusion of conference, and in fact when I finish here I have to drive two hours to do a mixed training interpretation tonight. So this is a real huge step that we did in Pennsylvania and I believe we are the only ones who are doing this for people with disabilities.

This is a Spanish support group. These are mothers that are together in everything and today we are celebrating the fifth year of this group and it is growing and growing and growing and all the mothers you see here, they have kids with special needs and everybody is getting the services they need.

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May 9, 2012It’s a lot to do. Here you have one me with one of the senator’s in the capital. It's a very interesting picture. This guy that you see here, he's the deputy secretary of the Office of the Developmental Programs. He does not speak any Spanish. All these people are Hispanic families that do not speak any English and they are together having lunch. We didn’t see this before. Now the government officers are sitting with our people having lunch and having a chat, conversation without any interruption.

This is my son Joel, who came ten years ago. He has the right to vote. I believe when you see the picture at the beginning when there is no limit for him whereto go, when you see when you help to guide the destiny of the country, you cannot get better than that. And everything is there for kids and the only thing we need to know is how to get it. We have to inform people and again you cannot get better than this, when you help to guide, this is a Hispanic person with intellectual disability voting in the last presidential election. I cannot be more proud of my son.

That is it for me, thank you very much for giving me the opportunity for this great webinar.

Thank you Emilio and Dr. Turchi and Dr. Gnecco. We are running a couple minutes over, but I do want to encourage folks that can stay on to please stay on so we can have a few minutes to just go over some of the action steps, and also allow folks to be able to ask them questions, you can see the question pod in the middle where you can write some of your questions.

To sum up some of the action steps that the three speakers have spoken about today, clearly use technology, the CyraCom phones, other phones. I see in the question section there have been references to Tradúcelo Ahora and other kinds of translation services. I will say on our website there is some information about what some of the automated services for translation are that family to family health information centers are using. Again, I do agree about the caveat that if at all possible it is really important to have either professional translators or a community number take a look at what you put out because there are some funny stories about what some of these programs can put out by mistake in translating. The other thing is to use the social media and networking. I know that the Facebook page in Spanish, that section is quite active for lots of different programs, especially the Facebook page for the medical home initiative that Dr. Turchi was talking about.

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May 9, 2012And throughout all the speakers, I think as the constant theme has been to partner, partner, and partner. And use as many different folks as you can bring to the table to help in this. The other thing is cultural brokers. Dr. Turchi, in particular, spoke quite a bit about using cultural brokers and to go where the people are. Word-of-mouth gets the community involved especially with a community that sometimes they seem to be invisible or where there are issues of trust due to documentation status. Really going out to the community and spreading the word is important.

Also, to think about the services that are currently offered. In particular Dr. Chaves-Gnecoo talked about how there may not be a need for new services, rather connecting some of the existing services or adapting some of these existing services may be important to better serve that community.

Last but not least, prevention pays. It is not about spending but it is really about saving. I also want to say one thing that is not on this particular slide but I think we have tried to use and what I think is important for everyone to keep in mind is that data is really important to be able to make your case. So we highly encourage folks to use the National Survey of Children with Special Health Care Needs and that it is very easy to use and can really give you a great snapshot of what is going on in your particular state and be able to compare it nationally or to other states in your region.

With that, again, we would like to acknowledge the funding support through the Maternal and Child Health Bureau. We also want to thank our program officer Lynda Honberg for being on the call and for her support, and also for the Executive Director, Suzanne Yunghans, of the Pennsylvania Chapter of the American Academy of Pediatrics that really helped us to connect everybody. At the end of this, there is, here's the contact information. I just saw someone post a question about if you could get the name of everybody on the phone. This webinar is going to be archived, both the audio version as well is the transcript and the PowerPoint presentation on our website. The audio and transcript will probably be up by Friday. But the rest of the PowerPoint will be up this afternoon.

So with that, I would like to just make certain we have had a chance to address some of the questions and would like to open it up to our speakers in particular if there is anything that they would like to address in the questions that have come in.

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May 9, 2012This is Renee. There was a question that said the translating websites. And I think it probably might be a good one to share with the group of us. Someone had asked about having, they want their national website translated and asked for some resources and someone mentioned Tradúcelo Ahora, which is something that we had used. I know I mentioned Google translate and I think that Diego had a great response as well.

I think it is really important as Myra mentioned to include the community in this process. Obviously as Myra pointed out, there is evidence that has been published. Dr. Glen Flores has an article a couple of years ago about the importance of using as much as you can as using either natural speakers who have for example health care professions, so if you’re seeing patients, ideally you have the doctor speaking the same language is the best. If that’s not the case, the next best thing is professional translation services. But nonetheless, involvement in the community in this process is really important, in particular because even though we as a Latino culture tend to be unified, within our culture, there tends to be many subcultures. So, you know different states have different representations. The east coast has more Puerto Ricans, the south has more Cuban Americans, the west has more Mexican Americans. Even within the state of Pennsylvania, the eastern part of the state where Dr. Turchi and Emilio are in Philadelphia tend to see more Puerto Ricans, and in the west where I am in Pittsburgh, we tend to see more south and central Americans and more recently Mexican Americans. So bottom line is that it’s really important to partner and you partner with the community as a way to optimize your translation and make whatever you are doing culturally competent.

I think there was also one question if I go back to the beginning, I think it was geared more toward Salud Para Ninos, and it was asking Dr. Chaves about how you are planning on working on the systematic data collection and what are some of your future initiatives. As I mentioned, and data is really important to be able to make your case and continue to get funding and be able to show that you're being effective. So if there is anything you can do to speak to that.

Sure. I apologize, I did not mean to ignore the question. I figured it was important to speak about and not type. The bottom line, one of the things we've been trying to do is to track how much difference we have been able to do. So things you saw in terms of the results, tracking numbers of patients enrolled number of patients assisted with health insurance. So those kinds of things we are going to continue tracking and hopefully with our goal this year to switch to electronic medical records, that is one of the things we wanted to look at.

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May 9, 2012We also use different tools like the Peds, We have the Peds in both English and Hispanic and so far that is something we have not been able to track. We use it for developmental surveillance, but we’re not tracking those results, so that is something we can look. There are other things we might include in our systematic data collection. For example, when we are seeing in primary care, new moms, we do Edinburg post partum depression scales in the first year of life of the baby, that is something we are doing but are not tracking. So hopefully as we move to electronic medical records, we will be able to track all these numbers. I’m not a researcher, but as Myra pointed out, for all of you who work in the community and usually we the people in the community, and work in the community, it is really important to keep those numbers because that is what helps us to make the case.

Great. Thank you. I think we have …

Myra, hi this is Linda. I again want to thank all of the speakers. One of the things have come out is the power of partnership. For all the D70 grantees that are listening, I hope that they also heard that message that to change the system and reach out to underserved populations, it really does take a partnership. I think there was a question earlier from someone about the role of parent partners, particularly in practices. So I did not know if some of the speakers wanted to address the role of parent partners in medical practices.

Great thank you. So if any of the speakers would like to address this? The question is how often are the parent partners meeting with the medical staff, because we know the professional partnerships are important.

This is Renee, I can give my idea on this. I would say like many of the things, it is important to get a sense of, from the parent and from the practice, what the needs and goals are. One of our lessons learned and again this is not the only way to do it, but one of the things that we have found that has been really useful to kind of get things off the ground is to have a focus group and often it is one of our team members that will run that from the practice.

We have found and gotten feedback from families that at an initial focus group with family members at the practice, it is sometimes really nice to have someone a little bit outside of the practice run the focus group initially, so parents can feel pretty candid and safe in giving comments, and we make it a point to have none of the doctors there. Again, it’s not meant to be a focus group to say everything that is wrong with the practice, but even to say what is an area for change, what is working well. And that focus group can often serve

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May 9, 2012as an impetus to think about parent partners, to start thinking and getting a sense of which parents in the group might bubble up to want to be a parent partner. One of the other ways we have identified and worked with parent partners is working with Liz Healey at our F2F. Liz Healey does really great parent leadership trainings across PA and so often we will work with parents and it kind of works both way in that we have a reciprocity where we will send parents to her trainings and sometimes if we have graduates from her program, in some cases those parents have served as parent partners in the practice.

And I think, a couple things I just want to say in terms of what you're asking about frequency of meetings, we’ve seen a variety of models work where after the parents are identified, having a meeting with the medical home team at the practice and having a frank discussion about some ideas from the focus group, coming together to say how often should we meet. We usually see practices try to meet with their parent partners ideally quarterly at a minimum. In some practices and in my practices, sometimes we have parents attend our staff meetings, or a portion of the staff meetings so they don’t have to sit there and be tortured by some of the logistics. We’ll have an agenda where there are things we really want feedback on or would be good for parents to hear. So you can have that model where maybe it’s not every staff meeting, but it’s some staff meetings. Some of our practices meet with parent partners as frequently as monthly if they are an established group. Many times as Emilio was talking about with support groups, we have examples across our practice network where the parent partner groups have coalesced into their own support groups and even meet independently of the practice and come back with ideas. If you’re planning a special event, like for example, the autism event that I mentioned in my presentation, we did have a parent representation that was one of our parent partners that give us feedback on that event. So leading up to and during that event, that parent partner was really engaged with us with a little more frequency.

The last thing I will say is about parent partners. We had a really great example of an idea that came from a parent partner to a practice and we’ve now replicated it in our practice network. We had a parent that worked with a practice to do a resource fair, where they basically within the practice in the evenings, the parent partner group came together and identified 10 resources in their community that they thought were really great, invited those folks from those resources into the practice and set up shop in the exam rooms. And then the practice opened up in the evening without patients and invited parents and people from the community to come in and learn about resources. We have seen that replicated in several practices throughout Pennsylvania.

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May 9, 2012

I would not say it is a hard and fast number, but I would say it is important that the parents are an activated, informed member of the team and that they are part of the team meetings in some form that works for both the practice and the parents, but there is no tokenism and not there just to say we have a parent, that they are engaged and have the opportunity to give regular ongoing feedback and that their input is valued.

Thank you Renee. Dr. Chaves or Emilio, do either of you want to say anything with regards to the parent professional partnerships?

This is Dr. Chaves. We have a community support group. We meet with them a couple of times a year and they provide us feedback in terms of how we can improve what we are doing and to receive feedback. I will echo what Dr. Turchi said that it tis really important to have those community partners involved in whatever you are doing.

I'm just looking at the time, so I can I want to just sum up two quick things. If you look at the screen, if you please take the survey because we take your feedback seriously. It gives us a chance to improve our webinars. But again I would also like to say we have tried to answer as many questions as have been posted here, but we are not going anywhere. You have our e-mail and website, so please do not be shy and send us an e-mail or give us a call and as I mentioned earlier, the contact information for all of our presenters is also going to be on the website. But I thank each presenter and I thank Linda and again special thanks to all of the audience members and all the great questions. This is really informative and thank you all. Have a wonderful afternoon.

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