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National Center for Cultural Competence

Georgetown University Child Development Center

University Centers for Excellence in Developmental Disabilities

Topical Conference Call 4

Infusing Cultural and Linguistic Competence into the

Six Core Outcomes for Children with Special Health Care Needs:

Success Stories

Thursday, May 23, 2002

2:00 p.m. - 3:30 p.m. EDT

Tawara D. Goode: I would like to say good afternoon to everyone. My name is Tawara Goode. I'm Director at the National Center for Cultural Competence. Welcome to everyone who is participating on the call today, Infusing Cultural and Linguistic Competence into the Six Core Outcomes for Children with Special Health Care Needs. And we are going to have the opportunity to look at success stories from various areas across the country. And I'm going to turn things over now to Suzanne Bronheim, who is a member of our faculty here at the National Center for Cultural Competence, and also to Diana Denboba, who is our Federal Project Officer with Maternal Child Health Bureau.

Suzanne Bronheim: Thank you, Tawara. This is Suzanne and good afternoon. And we are delighted that so many of you are with us this afternoon. Those of you who have been on our other conference calls maybe have gotten used to our format and we are going to depart a little bit today because you're going to be hearing probably more voices speaking than you have on some of the other calls. I think that really reflects the fact that when we begin talking about working towards these Six Core Outcomes for Children with Special Health Care Needs it's very collaborative work and it's very difficult to speak about the work with just one voice. So instead I'm going to go through briefly and let you know who you'll be hearing from. And as they speak you will learn more about them and the work that they're doing.

We're going to be hearing from folks in Hawaii today about implementing the medical home outcome with cultural and linguistic competence. And we'll be hearing from Sharon Taba who is the Project Director of the Hawaii Medical Home Implementation Project and is the co-author of the new book that we gave you the website to look at, The Medical Home, Reaching the Next Level. And actually her co-author, Dr. Lynn Wilson who is a cultural anthropologist will be on the line to answer questions if necessary.

We'll also be hearing from Harry Brown who is the father of Kahiau Brown who is a 6-year old with cerebral palsy. And he and his wife Donna are founders of a grassroots family group, Partners - Na Hulu Mamo, for families with children with special health care needs and Ko'olauloa, on the island of Oahu.

We are also going to be hearing from Dr. May Okihiro who is also from Oahu. She is a pediatrician who's been in practice for over 11 years in Hawaii, also in the Pacific Islands.

Then to talk about the goals related to making services easy for families to use, we are going to hear from Yakima Washington. Yakima is actually a winner of the Community Can! Communities of Excellence Award for doing an exceptional job of integrating services for young children with families. We will hear about their efforts in relation to that goal and particularly how they are infusing cultural and linguistic competence into those goal-related activities.

We will hear from Jackie McPhee who is the Program Coordinator for Child Health Services at Children's Village, Yakima, WA. They will explain to you how that helps them meet this particular goal or outcome with Yakima Valley Memorial Hospital.

JoAnne Jennings, who is a nurse and Specialty Clinic Coordinator at Children's Village and the Yakima Valley Farm Workers Clinic, which is an integral part of this integrated set of services. Deon Jefferson is the Client and Intake Services Coordinator from Children's Village.

And Jackie is there one other person with you?

Jackie McPhee: Yes, actually we do. We have the Director of Children's Village, Betty Ingham and Christy Albertson.

Suzanne Bronheim: Great. Thank you so much. So you can see we've got a lot of expertise on this phone call and we'll be hearing the variety of voices that it takes to do this work.

And now Diana, do you want to get us started with our discussion?

Diana Denboba: Sure. We'll be talking, first of all, about one of our Healthy People 2010 goals about children with special health care needs receiving coordinated, ongoing comprehensive care within a medical home. And I'd like to address Sharon Taba first. Sharon, could you just tell the audience because we have such a diverse audience from new and current grantees, friends, hospitals, youth, schools, could you tell everyone what a medical home is and how the concept relates to cultural and linguistic competence? Sharon?

Diana Denboba: Sharon? Donna? I think we lost Hawaii?

Harry Brown: This is Harry. I'm here.

Suzanne Bronheim: Oh, you're there.

Diana Denboba: Sharon Taba there?

Suzanne Bronheim: No. All right. We're going to have someone check back with the conference operator to see what's happened and we may have to shuffle some things around a little bit.

Suzanne Bronheim: This is, this is the conference operator. How can I help you?

Female Voice: We don't have a person on the line, Sharon Taba.

Suzanne Bronheim: Okay. I'll see what I can do. One moment.

Female Voice: Thank you.

Diana Denboba: Okay. Why don't we then move on, Suzanne, and maybe you can have a conversation with Donna and Harry and we'll get back to Sharon.

Suzanne Bronheim: Okay. And Donna is Harry's wife. She was going to be on the call but she is doing something very important today. There is a school trip and I would certainly vote for that over being on the call. So we have the opportunity to hear from Harry and it's nice always to hear a father's perspective. Harry, could you tell us a little bit about the area where you live and the families who are served, and, what are the challenges for getting services for families on your part of Oahu?

Harry Brown: Okay. Thank you. Aloha from Hawaii. We live in a community that's far removed from the main center or where most of the services are. So even though we are a small state in terms of miles, we are still a great distance away. And that presents sometimes a problem in the ability to, first of all, if we have a child that is of special needs, the travelling time can be a problem.

And secondly because my wife can't just take her, my son by himself, by herself, I'm sorry, it requires for me to take time off of work and it's a long travelling time to and from. So that's, a big part of my day that's taken away from my work. And so that's kind of, presents a problem. And I think because we live in a country area it's, the services seem to, people might feel that we are small in community and therefore the needs are not as great. But it's not a true statement because we actually have quite a lot of children out here with special needs. That's why we formed, my wife and I formed our own parent advocacy group.

Conference Operator: Excuse me, this is the conference operator. Sharon Taba is now on the line.

Sharon Taba: Hi, this is Sharon.

NCCC: Hi, Sharon. Harry was telling us a little bit about where he lives and then maybe we'll come back to you to talk about what Medical Home is about.

Sharon Taba: That would be great. Go ahead Harry, hi.

Harry Brown: Thank you, good morning. And, in Ko'olauloa which is an area that includes several communities we are a community that's quite close knit and also is a makeup of predominantly various Polynesian groups and also a lot of immigrant type of groups. We have Philippinos. We have Samoans. We have Chinese. We have Hawaiians. We have Japanese. So our group is predominantly made up in our community or in our local, as we call that, a lot of immigrant groups. And therein lies the cultural part, through our community of diverse Asian & Pacific Islanders communities these communities that would makeup our Ko'olauloa area.

Again, the distance of being able to get from one place to the other is a drawback and for a lot of times because of the makeup of the community and the makeup of types of families it's not easy to get to and from one area. And having to adjust your work schedules, and also our families are fairly large and it creates additional problems. So we are at somewhat of a disadvantage being out in the far reaches of the island.

Suzanne: Harry, what you were discussing really applies to a lot of rural environments, some with migrant, some with other kinds of immigrants. And we'd like to know, you were talking about specifically what some of the challenges were for you to access in Medical Home. Let's go back, Sharon, just, could you tell us what a medical home is and just link the concept of cultural and linguistic competence to it?

Sharon Taba: Sure. Medical Home actually found its way from the American Academy of Pediatrics. And the physicians are looking at Medical Home as a partnership approach. A partnership with families to be able to provide the best quality health care for their children and Medical Home implies care that is accessible, that is family centered, continuous, comprehensive, coordinated with other services, and, lastly, culturally effective. And culturally effective as it relates to cultural and linguistic competence means that the physician has the capacity, the knowledge to learn about customs and the other ethnic beliefs that families have. A monograph that we had developed talks about culture but also it goes beyond ethnicity. It goes on to socio-economic. It goes to faith, different diverse faiths. It also goes to diverse, you know, social groups. You know in terms of how physicians approach providing quality medical care.

Female Voice: Thank you, Sharon. And we know particularly in rural areas or areas that really have a shortage of pediatricians that some families look to other sources of primary health care other than pediatricians. Nurse practitioners, family practice docs, so that, you know, all providers of primary health care really relate this cultural and linguistic competence . . .

Sharon Taba: Absolutely.

NCCC: Principals to their practice.

Sharon Taba: Absolutely. And our Medical Home, Reaching the Next Level monograph, really looks at what this partnership is all about and extending into the community. If some partnership with the family extended to social workers, nurse practitioners, to the therapist, to the specialist, to the community leaders who support families in their communities. It is the handholding together in communities that we are talking about and what the Medical Home is doing in terms of reaching that next level. Partnerships to networks.

Suzanne: Thank you. And Harry from your perspective of parent with a child with special health care needs, how has your child's medical home supported you and your family and your cultural needs or values?

Harry Brown: I think, first of all, because we grow up in a particular type of culture here in Hawaii which is, very Hawaiian, a very Polynesian, they've been inbred with certain types of things & thinking pertaining to medical. A majority of that has to do with doing things in more of a natural way, herbal, or anything they can do aside from the so-called Western medicine. For the most part, that's how we grew up. But in our case, particularly now out here, we were able to partner up with Kahiau's pediatrician, Dr. Sutherland. And what's been advantageous in this particular situation is that Dr. Sutherland, with all of his knowledge as a professional and a doctor, was able to not only give us his perspective of things in the healing process or in the caring process of our son. But he also listened to us. Because we, we had very strong feelings that came from a cultural side. And we're very afraid of certain types of medical, you know, situations. But we work together. And Dr. Sutherland is very, very open to that.

We were looking for the best natural way to do things, while at the same time implementing, you know, some of the medical things that we are not familiar with that he has a lot of expertise in. So that part for us has been a partnership that has worked real well. And that's how he's been advantageous to us because he's helped Kahiau to be complete. I kind of look at this as, you know, if I want to eat a pie, the pie can be cut into pieces. And I'm going to have something that's going to be delicious, you know, a piece of the pie. But when you partner it's not just one piece, it's a complete whole.

At least I feel that. And my wife does. So we are very comfortable with Dr. Sutherland, the pediatrician for Kahiau and his ability to integrate our feelings, our beliefs, our cultural upbringing and mix it in with so-called quote, unquote, Western medicine.

Diana Denboba: And Harry could you just give us an example of, maybe a different spiritual perspective?

Harry Brown: Yes, I could. For instance, one of the things that Kahiau has to do with his nervous system. And although there are medications that when we took him in to the hospitals, they, some of the ways to try and solve that problem was to do some surgery, some major surgeries, many of them. And we were somewhat hesitant and afraid and somewhat against it because it was cutting up our son. So we talked to Dr. Sutherland and we told him, that's not what we want to do.

What we want to do is first, let's try our way and let's see if this would work and he was very open to it because we talked about doing the natural Lomi Lomi or the natural massage is what we call. And it's more than just a massage. But it's actually, people get trained in it (Lomi Lomi) here in Hawaii from a spiritual side. It is not just the physical part but it's the connection, between the patient and the persons that actually get involved in preparation before touching our son. And he was very supportive of that.

So we have been taking him because he has a curvature of the spine. We did not want to go in and cut and try to correct that. We wanted to see if we could help him from a natural way to correct that. And so far it has, it has done that with the Hawaiian practice of lomi lomi and the spiritual connection from the person that is doing it. It is not just somebody, anybody that can lay their hands on them, it's really an art and quite an involved process. And it's repetitive and it's ongoing and for a long period of time.

But I've seen, we have seen, the benefits of what's happened and yet we've been able to accomplish our goals while trying to help him. So, you know, it's worked. And so that's been a real positive for us in terms of that spiritual connection from a cultural side.

Suzanne: Thank you.

NCCC: Maybe we should go on now and speak with May, with Dr. Okihiro. Did you want to start?

Suzanne: Sure. Hello, again.

May Okihiro: Hello.

Female Voice: Could you tell us a little bit about the cultural and linguistic groups that you're serving in your medical home?

Ma Okihiro: Okay. I work at a health center in Waianae, Hawaii, which is on the west end of Oahu. It's also a rural community that our health clinic serves mostly a large group of native Hawaiians plus a mixture of Pacific Islanders, including Micronesians and Polynesians, Samoans and Philippinos.

Diana: Excuse me, so what sorts of challenges do you find trying to provide care in a medical home with such a diverse group of families?

May Okihiro: One I think is just the poverty. There's a lot of poverty with the patients we work with. That's one issue. The second is just, you know, lack of resources from the patients themselves. And then it is a, quite a diverse culture. We have new immigrants, kind of similar to what Harry's been talking about. But we also have a local population of native Hawaiians who, of course, have a little bit of a different culture.

Diana Denboba: Thank you. A key aspect of any medical home is connecting with other community-based resources. How do you use partnering and networking with other services to make the medical home culturally and linguistically competent or effective?

May Okihiro: Well, we are lucky in that our health center has been around for about 30 years now. And has been very attuned to the needs of the community and has established a group of community health workers that are part of our health center. And they go and visit the patients at their homes, especially patients who have complicated medical problems or who are having problems accessing the health care system. And working with those community health workers are social workers and some nurse practitioners.

We also work very, very closely with our state public health nurses who have been tremendous in helping us with our complicated patients. And we also work with some of the community organizations that also provide services. So we've tapped into lots of those services because, of course, we can't provide them all ourselves as pediatricians in the clinic.

Suzanne Bronheim: This is Suzanne. Could you give us a couple of concrete examples of how those partnerships have helped families from diverse backgrounds really, you know, feel like their culture is respected within the medical home?

May Okihiro: Okay. I think one of the examples that come to mind is a young Tongan boy with severe cerebral palsy who we started working with a couple years ago. He was at that point, about three years of age, and his mother, who is from Tonga, was spending hours everyday trying to get this child to feed orally enough to keep his weight, you know, barely going. And at that point she didn't really know about other feeding methods and was really, it was taxing the whole family because she had other children and he was taking so much time just to feed him every day. And he came to our clinic and we got the public health nurses involved, got some home care nursing involved and actually, eventually worked with her in deciding that probably for him a gastrostomy tube would assist his life and their whole family's life in kind of moving forward.

And I think that through working with her she understood that she could still feed him small amounts, which was culturally very important to her but also that we could use the gastrostomy tube to supplement his feeds. And she was very accepting of that. But it took, you know, explaining that and working with those different services and the public health nurses to come to that conclusion. And he's done very well since then.

Harry Brown: Could I also say something about that?

Suzanne Bronheim: Yes.

Harry Brown: Here on our side, we are on the opposite end of May and in our area because, again, is the distance. We rely heavily upon our community and the close-knit of the community helps tremendously. But we have some organizations. We have one that's called Queen LeLee Okahauui Children's Center. It's not located just in our area but throughout the island.

Suzanne: Right.

Harry Brown: And that is a service oriented particularly for children. And that has been a great part for our son because, when we took him there to a program for the children, preschool kids, we took him there and everything that is done there is done from a cultural perspective.

So, it's helping to reinforce some things that, you know, we believe in. But, in addition, they've been able to provide funding, financing, for some of these programs that we looked to help extend beyond just the educational side. And they, they've been actually very active & supportive of our parent support group that we formed in funding some of the programs we have. Because we are an island, because we are surrounded by the ocean, because we live in a rural area, naturally it becomes a part of us to also have animals and to be at the ocean and to, you know, have anything to do with that. They've been able to help us steer and direct our areas so that they were able to also do therapy, which is a healing portion.

And the therapy portion involves dolphins. So our son and several other special needs kids were involved in dolphin programs. That was something new in Hawaii. And it's very good for stimulating, for motivating, and that's all part of the process of the total individual. It's more than physical. It has to do with the mental and the spiritual and that's been very, very effective for our son. He's also been in horse therapy. We have ranches out here in our area that have been very open to bringing in children with special needs to help them. And this ability to interact and to be stimulated by these animals that, so, it's been good.

That's the partnership we have. In addition, we also have the university, Brigham Young University's in our community and they have special needs programs. They have educational programs. They have social work. And they have been a part of our parents support group by coming to assist us in the therapy and the exercises that needs to be done that can actually be very weary for families. So this has been an extension, a helping hand that, you know, opened up beyond the parent and beyond the family so that it, it helps, you know, dissipate.

And the last thing, I think, in our community that's been an example of that is the families themselves. I think very much that the families have a lot to offer and that they have, because they live with the child and we have lots of the same concerns. And therefore the support that comes from the families themselves has been actually a very big positive plus in being able to not only share ideas but to lean on each other, to support each other, to be there for them when they are having some difficult times. They're all part of when I look, you know, in the medical, as the thing that helps you with your particular situation and your child.

Suzanne Bronheim: Thank you so much. This is Suzanne again. And for Dr. Okihiro, if you were going to give two or three pieces of advice to other medical home providers who want to incorporate cultural and linguistic competence into the medical home, what might those be?

May Okihiro: I think it's that you can't do it all yourself and there are services in many communities, public health nurses, and other community organizations like what Harry was talking about. I know it takes extra time to get to know those services and to call people back and communicate with those people. But in the end it actually helps tremendously. I remember being, when I first came back and started working in Waianae, being kind of overwhelmed by all of the phone calling initially for these complicated patients. But it actually has gotten to a level that's quite manageable because I know the community people I'm working with and I know my families well now. And so it's actually taking much less time than it started off to be because I think everybody's, you know, working together. So I think networking and maintaining those networks in the end saves time.

Suzanne Bronheim: Thank you. Thank you. And Sharon, many people see Hawaii's experience as different or unique. But, I mean, we were talking about some of the access issues that might be common to a number of places. How does what you've learned in Hawaii apply throughout the country?

Sharon Taba: Well, Hawaii has been a state that's been populated by first, the native Hawaiians. And we've had generations and waves of immigrants that have come in that have shaped Hawaii's economy, politics and culture. And our families have taught us to live together in faith and tolerant ways. And in the United States and the, there is continually waves of immigrants. Latinos, 11% to 24% projections, there's going to be more Asian Pacific Islanders. And as the waves of immigrants come in with different cultures, faiths, beliefs, different socioeconomic levels, we can provide the lessons learned through them and the families who can help transform our health systems of care.

And I'd like to also say, we have a very stellar visionary, Dr. Calvin Sia and Tom Tonniges at the American Academy of Pediatrics. And you, Diana, of course, and Merle McPherson have really supported us on the advocacy level to connect what Hawaii has learned to other states as well. And there are some, so many innovations that are going on in states like California and Texas who are right now on the cusp of learning how to integrate, to transform and to partner with our families.

Suzanne Bronheim: Thanks. Well, I think now we're going to shift gears to the other of the Six Core Outcomes that we've chosen to highlight today, which is, Diana, do you want to give the exact language?

Diana Denboba: Well, it's exact according to today. It's our goal that community-based service systems will be organized so families can use them easily.

Suzanne Bronheim: All right. And so we are going to be talking to the folks in Yakima, Washington and to just start with, I know they have developed a wonderful interloping set of services and supports in the way of doing things. And so if I could ask you folks to describe briefly the approach you're using to make services easy for families to use?

Betty Ann: This is Betty Ann, the Director at Children's Village. Would it be helpful for us to first just go through the demographics of our county so that you have an idea of some of the basic diversities that we have here?

Suzanne Bronheim: Well, we thought we'd like to hear first kind of generally what you're up to and then, that would be the next thing we would talk about.

Betty Ann: Okay. Fine. Thanks, Suzanne. Deon Jefferson's going to answer that question, and JoAnne Jennings.

Suzanne Bronheim: Okay. Thank you.

Female Voice: Hi, this is, Deon Jefferson, can you hear from there?

Suzanne Bronheim: Yes.

Deon Jefferson: Okay. I'm the Intake and Client Services Coordinator here at the Children's Village. And as I believe Jackie explained to you, we are a group of agencies that are co-located at one site. And I think the most important thing that we figured out after we moved here together is that it was critical that we had a single point of entry for all the referrals that came into this building for families to contact. And so that has been my position here at the Village is that single point of entry for all contacts from the community.

With that single point of entry has also come a single record for each family that comes here for services. So whether they are accessing farm workers clinic or a service by memorials or what not, it's one charge, one chart in the computer system as well as one medical chart here in the building. So, we did work really hard to have the agencies come together and agree upon that to make it easier for families where they only have to fill out one registration form, answer the questions once and not have to do that several times at the same location.

The other thing that we have identified as in the community is basically an informational site for services in our community and sometimes a little bit outside of our community. So I think it's important with that single point of entry that we are able to answer the questions from providers in the community about where they can access services, not necessarily services that are here. And so not only do families know that that's what they can call here for but also providers in the community. And they can usually get information about where they need to go to access services for their families.

We also have onsite family support for a family that is receiving services here or services out in the community that's a component of Children's Village that has been just wonderful to have. It used to be, you know, an outside agency and now it's here onsite for our families.

Let me switch pages here.

Diana: You know that sounds really great. Can you just tell us a couple of the agencies that are co-located?

Deon: The agencies that are co-located here are Yakima Valley Memorial Hospital and they're, the services that programs are available from Memorial here are Child Health Services and Pediatric Therapy Services, Genetics, Counseling Services, the Parent-to-Parent program falls under Memorial. And then we also have Yakima Valley Farm Workers Clinic onsite. They are providing dental services, specialty clinics with doctors from Children's Hospital and mental health services at this point in time.

We also have Epic as a partner and they have a Head Start and an Early Head Start program here onsite. And we also partner with the Yakima School District to be providing their early intervention services.

Diana Denboba: Sounds wonderful. And you wanted to tell us a little bit about the demographics there so describe the diverse families your serving and what some of the challenges are?

Female Voice: Thank you. The population that we're serving is made up of about 43% Hispanics, around 33% Caucasians. We have a large Native American reservation here. It makes up about 4% of our caseload. And the rest are in smaller ethnicities that are within the valley, ranging from Asian to a Black population.

We are located in the central part of the state and we are not at all like Seattle that has a lot of rain. We are semi-arid. We have a very low density for the amount of land mounts that we represent. We have about 4,200 square miles of land. We have 220,000 people that live within our county boundaries. In terms of four different challenges that we deal with, one is transportation. It's not unusual for families to have to drive 50 miles to get to the nearest medical services. We have no public transportation. We do have a transportation broker that serves some of the rural areas. But it certainly is not comprehensive.

Our community was settled in the late 1800's and we are an agriculturally based population that's trying to diversify. So one of the challenges we have are economics. A small percent of our 220,000 people have a very high income, but the larger percent of them have a very small income. We have a large youth population under 18 and a fairly large senior population. The income of residents is 34 or 37% below the state average. The working poor make up a significant portion of our population. There are about 78,000 residents that are receiving some type of state services. 74% of our hospital births and 77% of our neonatal intensive care births are on Medicaid or are Medicaid eligible. So economics is definitely a challenge.

The third challenge is language. There is a concentration of limited English speaking residents in Yakima County. We have a two to three generation settled out immigrant population and also a migrant population. There is about 11% or 23,000 residents age 5 or over that are limited English speaking, as compared to 3% in our state. And probably the fourth issue that's a challenge is the rural setting, like Hawaii. It's often difficult for families to get specialty care, access to care is a big issue. In order to drive to Seattle to get some very specialized care it's not unusual for a family to have to drive 200 miles, which is certainly a challenge and a burden for families. Because of these challenges over the years, we have built strong community relationships with partners to collaborate around service provision.

We don't seem to have the paralyzing turf struggles. We collaborate on funding opportunities and decide where the strongest leadership is centered and which agency might be the strongest lead entity. There are models of integrated service approaches including the Village idea itself. We have a facility that's very similar to the Village for at-risk youth in the community. When we were trying to deal with access to care, both major hospitals came together and collaborated on a family residency program. We have community-based immunizations programs that have been coordinated with our health district, but it's done by private providers. We do community assessments as a partnership within the community.

And we also work on numerous local, countywide grants. One example is a new grant we are working on to provide a countywide system of service around interpreting issues, language barriers. So our culture is that of collaboration but very definitely some significant challenges that I think, that Hawaii also identified as challenges that they have.

Suzanne Bronheim: Thank you. It's always amazing to hear what you folks are up to because, to let you know once you get that cultural collaboration, things keep growing. Within that framework, what are some of the specific things that you've been doing to make your approach work for the diverse families in your community and to meet those challenges?

Christy Halbertson: I'm Christy Halbertson and I'm the current representative. And I have three areas that have been probably core to the success in programs at Children's Village. One of them is probably direct services, going where families are rather than families always coming to our actual site here at Children's Village. Offering support groups, providing opportunities for families to come together for socializing activities, support outreach, involvement in established community health fairs, sharing information in English and Spanish. And also offering resources for parents for transportation.

Children's Village has become obviously a resource to other providers in the adaptation and translation of materials from English to Spanish to help provide to parents, such as Children's Hospital Regional Medical Center, their care notebook was translated. And our Helping Parent Training Manual was also translated. The other areas, families active in development, parents involved in ongoing development of Children's Village programs, services representing diverse populations. Just a couple examples are parent volunteers with the fetal alcohol clinic, parent-to-parent advisory board, feeding team and just actual parent volunteers helping with all of our events.

And then we have the community education, raising awareness of issues facing children and their families to insure that community programs successfully support and include all the families. We offer interactive radio broadcast, which reaches the Spanish speaking community and families call in and then guest speakers are invited to share resources. And also through Children's Village we now have, or have had, an ongoing Hispanic outreach coordinator so she can help with some of the cultural concerns with the Spanish speaking families.

We have sensitivity training provided to the generic social service agencies and community programs such as people-for-people. Best Self is a summer childcare program. And we have disability awareness and cultural diversity training offered through Kids on a Block program to local schools, childcare centers. We also go out to the Indian nations, Head Start programs and Department of Disabilities, respite care providers and mental health care providers and professionals have also been offered these programs. So basically our main focus is to facilitate outreach support, educate and provide services to families raising children with special needs and the community programs and agencies that work with them.

Diana: Thank you. Particularly interesting about the spots, the interactive sessions you have in Spanish, on a Spanish radio station and also use of the puppets, Kids on the Block, which, you know, incorporates programs having puppets with special health care needs and diverse kids.

Let me ask you what might be two or three pieces of advice that you would give to others working to create a culturally and linguistically competent system of services that's easy for families to use?

Christy Halbertson: Okay. Well, probably keeping the families involved in the development and ongoing support and mentoring to families. We have a program with the Helping parents where families are matched with other families that basically have the same health care needs of their child. And so we provide ongoing support to each other. That's really a big piece, I think, in parent-to-parent, the support and mentoring. But also I feel as a parent when I came to Children's Village, I feel like I was empowered by the support and that resources were given to me to help me better advocate for my child's health care needs. So I think that was really a, a key highlight for me as a parent.

Suzanne: Thank you, Christy. Now I'd like to know from anyone there at Yakima and I know you are all jumping up and down waiting to answer this question. Because it's how could state Title V and children with special health care needs programs better support communities in the kinds of activities that have been ongoing there? You have a list, right?

Female Voice: Oh, we sure do.

Jackie McPhee: This is Jackie. I'd like to answer that question.

Jackie McPhee: To be able to share our successes with other communities. I would encourage additional use of teleconferencing, conferences. We still look back at our Communities Can! experience as being one of the highlights since we opened the Village. We continue to network with people that we met through that award process. I like to call it a process because it wasn't just a one trip to Washington, D.C. to accept the award, it was an opportunity for us to network on a daily basis with our friends that we met there.

I think that in terms of MCH Bureau and other state programs, the ongoing communication and the focus on outcomes and not so much on regulatory compliance, we like the direction of the 2010 train. We want to be on it. We want to encourage that federal funding cycles and requirements be aligned with the state funding requirements, that we want to explore all opportunities for grants such as the Wise grant. We feel that the Wise grant has given us another opportunity to help us understand the integration of service systems for families.

The common enrollment and blended funding goals, the integration of data systems and care coordination are all opportunities within the Wise grant that we are working on.

We would like to just reemphasize that it is our partnership with families that had allowed us to move forward. From the very beginning, families were a part of our team. They continue to be a daily part of our team. We could not have developed Children's Village without those partnerships and also the partnerships that we have with the leaders in our community.

Suzanne Bronheim: Well, thank you. It's just always so exciting to hear what's happening out there and to see that people really are making wonderful progress on these Six Outcomes for 2010, that we're not going to have to wait that long for everybody to get the train into the station.

Now I guess it's time for us to hear from those of you who have been listening, to hear your questions and so we can ask the conference operator to open it for questions.

Conference Operator: Ms. Gordon, before I open it for questions, I just wanted to check with you. Did you want me just to go ahead and open all the lines or did you want to do true Q&A fashion.

NCCC: True Q&A, thank you.

Conference Operator: Okay. Then I will go ahead and open up the lines. To the callers who have questions, to enter your call into, or question into a cue you dial 01. And to decline a question once you have already entered, dial 02. I will call on you by last name and state when your question is up. Just give me about 10 seconds and then feel free to enter your questions into the cue.

Suzanne Bronheim: Any questions out there or?

Female Voice: Are we getting any questions or even comments? Well, while we are waiting, Sharon, looking over this practical tools booklet for culturally effective practice in the medical home that comes as, like, an appendix piece with your medical home. Reaching the next level, I think it's really nice that you have different kinds of tools in here for everyone. I particularly like, you have one that, where, it's called a diversity index office cultural assessment. Where a provider that's in his or her office can just take a look at what are some of the kinds of things that they are or could be doing to be more culturally competent or effective.

Call Operator: Okay. I have Tom Castonguay here. Tom, you have a question?

Tom Castonguay: Yes, I have a question for those, for Yakima. You are at such an advanced state now that you’re an outstanding community, but for most of you, what was the hardest thing to overcome in the beginning in developing the medical home in your area? We'll start with Hawaii.

Suzanne Bronheim: Sharon? May?

Harry Brown: This is Harry.

Suzanne Bronheim: Okay, Harry. You want to, I know you were one of the parent partners working on the medical home project in your area, so could you answer?

Harry Brown: Yes, and the question again is what?

Suzanne Bronheim: What was the most difficult thing at the beginning, getting the whole process going with developing the medical home?

Harry Brown: In Hawaii it had to do with the get up and go and the can do attitude. I think that was the thing. Most of the time we feel that the, getting anything started is such a big burden and you try to look at the end result of what you want to achieve that you give up before you even start. So overcoming that attitude first was one of the bigger humps. And then secondly after realizing that we have to start and have to do something, then secondly it was just being able to make the proper connection and have people buy into that, that process.

Suzanne Bronheim: Can I ask Yakima?

Betty Ann: I guess I'll give my perspective, this is Betty Ann, the Director. I think probably one of the biggest challenges was articulating to the community, both the private, the provider community and the donor community, what this vision was because we didn’t have a concrete model. We asked for safe community to support us in a concept and within 18 months the community stepped up and built us a $4-1/2M building based on a dream, on a hope, on a vision that we couldn't put in a real articulate way. They had an understanding and a faith that what we were doing was the right thing and to make mistakes and grow and develop it as long as we kept our central focus around serving the needs of children and families. And that the families were the principal leaders for us in deciding how to make decisions and what would work best to them.

Wendy Jones: This is Wendy Jones. I guess I want to take this moment to thank all of you who may still be in, listening earshot, or what have you. Thank you so much for participating on the call with us, for being present. This is sort of the final call on our call series for this fiscal period. And it's been wonderful to have the opportunity to share the information with you and especially wonderful to hear back from you in terms of your completion of the evaluation form.

The information that you provide to us helps us to know whether the objectives that were set forth for the call were met and help guide us in developing a future conference calls. And so right now it seems like an appropriate time to ask you to make sure that you complete the evaluation forms that were emailed to you along with the agenda and sort of, rules and engagement, the structure for this conference call. And make sure that you do fax it back to Kimberly, 202-687-8899.

Diana Denboba: While we are waiting, Wendy, I also wanted to thank people for being on the call. Indeed, again, we have a wide variety of agencies and organizations represented. We have family groups, we have family voices. We have hospitals, managed care organizations. We have a chip agency. We have newborn hearing screening. We have grantees, public schools. So the word has gotten out and a lot of people are coming aboard the 2010 express.

Tawara D. Goode: This is Tawara. We have about 25 minutes remaining in the call and I think that we can look at ways in which we are best able to utilize that time.

So what I would encourage us to do during this period of time, I'll defer to Diana, Wendy, and also Suzanne is maybe while we've heard many things, since there's an opportunity to summarize the things that we've heard. One perspective that seemed to permeate each and every one of the experiences that were shared and that is the whole notion of involving families from the very beginning and what it takes to be able to do that.

Often times grants are written. Oftentimes facilities are designed. Often times models are developed for service delivery without really involving and asking the recipients of the services what they would need it for. And I'd like, perhaps, if folks in Hawaii and also the state of Washington can tell us a little bit about how you involve families from its inception?

Is anyone from Children's Village still on?

Female Voice: Yes, we are.

Tawara D. Goode: We caught you a little unaware so we'd like to make some use of this time.

Right. You know, I think Joanne Jennings has a wonderful answer to part of that question.

Tawara D. Goode: Great.

Joanne Jennings: I was just saying that when we designed Children's Village we designed it kind of like a village. If you walked down one of the hallways, the builders actually dubbed it Miracle Street and that's its name today. And it looks like a lot of little buildings so that as you are walking down the street, different offices and different services look like different buildings within a village. And I was just saying that parts of Children's Village were designed by kids. And there are, as you walk in the front door, there's a big rainbow. And in it, in the glass are engraved some of the pictures that local kids have drawn. So kids and families were involved in that way in designing it.

Tawara: Thank you. Are there other approaches that people have used to involve families from the inception, from the very beginning?

Conference Operator: This is the conference operator again. I just wanted to let you know, if you have a question just go ahead and speak up. I have opened your lines completely.

NCCC: Okay. Thank you.

This is Helen Dullock in Georgia. Can you hear me?

Female Voice: Yes.

Dullock: Okay. My question is sort of the reverse of how do you get started getting with the medical home? I'm with the State Public Health Agency and we are working very hard to get all of our children enrolled in our programs, documented and actually using a medical home. But as a state agency we feel a little stifled in going forward when the state pediatricians or family health practitioners, family health practice physicians, are really not interested in quote, unquote the medical home.

Sharon Taba: Hi, this is Sharon. I'm in, I'm in right now.

NCCC: Okay. Did you hear the question, Sharon?

Sharon Taba: No. I just heard the last, the tail end of it.

Dullock: How can you stimulate interest in medical home in the private sector if you are a public health state agency? We are doing everything we can to get a medical home documented for the children enrolled in our Title V and Part C programs.

Sharon Taba: Well, you know the medical home is a culture in itself. And in terms of time and I think I've sped up how I talk and frequency at which I do. It's, again, relationship-based and understanding the times that the pediatrician or the family practitioner is and can be available. What we found is that on a case-by-case basis but also throughout for physicians they are usually readily available. If you call them and say, hi, this is Sharon, I need to talk to Dr. Okihiro could you please have them call me back. And usually they call you back within the lunchtime. If it's after hours they, physicians get really frustrated because, you know, everyone is in the state system is down or, you know, they're gone from their jobs. And so if you can be readily available so that they can call you back after hours that would really help with communications.

Tawara D. Goode: This is Tawara. I'd like to add a few more things to that as well. One concept that we have in one of our publications is around getting buy-in. And I think what I hear from you is perhaps being buy-in systemically. These are the questions that I'd like to represent. One is just looking at the local pediatric medical and other chapters within the state of Georgia to meet with them to talk about the importance of its medical home model so that you have other people within the medical profession also advocating and supporting this effort.

Another also would be, again, since things happen at a very individual level, physician to physician. So that if you have several physicians within the private sector who are very much interested in this, but if there's a way in which they can advocate and support others in the area of interest.

Also, you could look at ways in which you actively involve families to advocate for this on their own behalf and in collection or in combination with the public health department. What I would recommend though is that you give a call back to Wendy Jones so that we can give you some more detailed information on ways in which you could look at getting buy-in. But I think that you would have to use multiple approaches, not one single approach and you'd have to have partners outside of the health department to help you in this general arena.

Suzanne Bronheim: This is Suzanne. Also since we've been hearing some families in another one of our communities of excellence in Idaho. And there the families have taken the lead on engaging the physicians in this medical home concept. And what they've done is they've gone over, at lunchtime, taking them some lunch, talked to them one-on-one. Physicians are fairly responsive to their own patients and to families and to hear their perspective how this would be helpful to them. And so, again, this is very important to the partners.

Helen Dullock: Thank you.

Joanne Jennings: This is Joanne in Yakima. Can I add something?

NCCC: Sure.

Joanne Jennings: I really, I agree, that I think physicians do respond to their patients probably the best. But I think that a lot of physicians in private practice feel kind of isolated and they don't realize what they can get back by working within a medical home and partnering with other agencies and other service providers.

I think a medical home is a lot of give-and-take and when these physicians feel like they are not getting anything back, I think they tend to not want to work with other agencies. And they need to know what's available in the community. And maybe hearing it from their patients is, is a place that they will hear so that they can begin to develop some trust around the services that are available to them and their families and how it can make their own job easier.

NCCC: Thank you. Any other questions out there?

Kate Orville: This is Kate Orville in Seattle, Washington. And thank you everybody for talking. It's been so interesting. Part of what I have been wondering about is how do you sell the culturally effective concept to providers if, we've been working on medical home effort that Joanne and Jackie are involved with, but how do you add to the culturally effective piece when you are trying to sell medical homes to providers if they are already kind of feeling overwhelmed? I mean, explicitly selling that?

Sharon Taba: I think, this is Sharon from Hawaii. In terms of culturally effective care I think the basis for being culturally effective is really respect of the family and really trying to get the physicians and the families to understand the importance of that respect. And although it seems very simplistic, you know, in terms of getting folks involved in the cultural aspect, it's really important to have that sort of knowledge and skills and the ability to hear and listen. I think it's very hard for professionals to sit and listen and have families really kind of pour their heart out with regard to, you know, where they are and how they are feeling. But I think it's down to those basics, respect and listening.

NCCC: You know, Kate, what some providers found in Florida and California working with Parents Helping Parents is that taking into account mutual respect and asking about cultural values or whatever really help them to develop a better relationship with their clients. Some providers do not comfortable with people who are not of their own culture. So if you give them some pull that will help them relate maybe more effectively I think they feel better about what they are doing.

Sharon Taba: Hi, this is Sharon again. With regard to our monograph, we do have some practical tools, a section, a series of tools that starts from, it's a self-assessment tool that sells some self-awareness to acceptance to actually doing culturally effective advocacy. And it's, it's really kind of a checklist for the physician and the office. And we were wanting families to kind of take a look at that and see how it works for them.

Joanne Jennings: This is Joanne in Yakima again. And one of the services we've provided at Children's Village is specialty consultations with specialists from Children's Hospital and Regional Medical Center in Seattle. And it, over the past few years since these physicians started coming out here I have seen a huge change in their knowledge base and respect for cultural diversity. And I think it's been a direct result of their coming to our community and seeing our families here.

Gail Johnson Anderson: Hi, this is Gail Johnson Anderson from Maryland. My question is, how do you deal with, everybody has biases and prejudices when dealing with the various communities, how do you address the cultural biases and prejudices that are not necessarily spoken but are projected in the service delivery?

Sharon Taba: I think this is, again, this is Sharon from Hawaii. We've done so much in terms of asking physicians, families and providers to talk about themselves with regard to, you know, their perceptions of the other person sitting in the other, on their other chair. And I think that what they've come to, physicians included, is that, it really starts from me and trying to have families talk to us about how it is that we are coming across and having that physician being open. We need to wait until that physician is open or at least be able to say, you know, can we be honest with one another today and just putting our judgments and our prejudices and bias and just kind of talking human to human.

Female Voice: Joanne, are you finished saying what you were talking about before?

Joanne Jennings: I think so. But I think just to summarize it, it's been the exposure of these specialists to leave the big tower in Seattle and to come across, whether it's driving across the mountain paths themselves or having difficulty on the plane ride getting here, but just the exposure.

Suganya Sockalingam: Okay. Thanks. I want to get back to, was it Gail's question, as relates to bias and prejudice. I think that there's not a simple answer to, to that at all. I would like to share some ideas with you but would also encourage you to call our toll free line for technical assistance. I think that whenever you are talking about bias that maybe is inherent with an institution, one may use a different approach to that than perhaps bias within an individual practitioner. And I think it's a very sensitive issue. I think it's an issue that needs to truly be addressed.

I think there's a lot supporting in the literature that shows that even unintentional bias has a negative effect on health fair outcomes across the board. So I would encourage you all to call. I don't think there's a cookie-cutter approach to this. I think that there are a number of people who do some excellent training in looking at addressing stereotypes and bias but in order to be successful we must acknowledge that its an ongoing process. And ultimately it really is up to the individual if we are talking at an individual level to look for a change.

Sharon Taba: Hi, this is Sharon again. With regard to training, I'm really glad that you mentioned that because across the country there is a N.E. Dyson communities, pediatrics in-training initiative that looks at and really focuses in on culture, developing cultural contents about pediatric residents. We do have one in our state, in Hawaii, Wisconsin, Columbia, San Diego all have these and they are increasing it to ten sites, which include California as well. And, so, you are right. It's not a simple answer. And so I think all of these residency trainings are really trying to take a look at how they can provide that kind of training in a systemized way in order to have our new generation of pediatricians trained to be more culturally effective.

NCCC: Any other questions or comments?

Tom Castonguay: Tom Castonguay.

Female Voice: Yes.

Tom Castonguay: I wanted to say, on an optimistic note that if we all look at how care was delivered to the service environment 20 years ago, it wasn't even patient centered, much less family centered. And I think the amount of information that is now available to people in general, particularly through the Internet, has made them more partners in their own care. And they are more knowledgeable and more empowered. So they're not going to stand for a lack of communication with the physician. And I think those that don't get on the train are going to be left behind.

And I think in an encouraging way, knowing the patients can only be more valuable in a number of ways, including avoiding such things as malpractice suits. And actually we are doing cost measurement studies right now and we believe that if you do proper coordination of care you will save money. We don’t currently have the statistics to show doctors, but eventually we will. And we'll be getting results from several surveys in the next year that may help us do that.

Diana Denboba: And just to let people know, Tom Castonguay is also at the Federal Maternal Child Health Bureau in Division of Services of Children with Special Health Care Needs. And he is the Project Director for their various funded medical home activities. I do think that as we think about roles for MCHB, overall, and DSCSHN as well, is to look at continuing to fund projects that demonstrate efficacy as it relates to the delivery of culturally and linguistically competent services to show how that would impact health care and the ethic and racial disparities within. And the more projects that are funded in this general area it helps build up a base of knowledge that, that we're not still trying to prove to people. But this is indeed a viable option and a way in which to deliver services to children and their families and also to communities.

Suzanne Bronheim: Well we are just about up on our time so, this is Suzanne again and I want to thank all of our speakers today for sharing their experience and wisdom. And remind you once again about sending us evaluations. It's very important to us because it helps us improve what we're doing and learn if it's meeting your needs, which is what this is all about. Thank you again to Diana Denboba, Maternal Child Health Bureau, who is our guiding spirit. And to all the folks here at National Center for Cultural Competence. And we hope that this was helpful to you and interesting and we look forward to hearing from you if you have questions or concerns and also visiting our website, which we are updating regularly.

NCCC: Thank you, everyone.

Sharon Taba: Diana and Suzanne, I would like to thank you from Hawaii for the opportunity to be on this National Center for Cultural Competence call. Thank you so much.

NCCC: And thank you from Yakima County in Washington state as well.

NCCC: You're all doing a very fine job. We thank you.

Suganya: Participants, in about a two-week period of time you will find excerpts from this phone call posted on our website. So please stay tuned. We look forward to serving you further in the coming fiscal year where we plan to have additional topical conference calls.

Female Voice: Thank you. Good-bye. Have a good holiday weekend.

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