Incorporating Cultural Competence into Program Priorities: States

Jennifer Cernoch: Wonderful. Thank you. Great. Wonderful. I’m going to talk to you a little bit about--from the family perspective, many of you raised your hands when Diana asked if you had heard of Family Voices. But for those of you who do not know who we are and what we do, Family Voices is a national grass-roots organization of families and friends speaking on behalf of children and youth with special health care needs. And our mission is to focus on health care that is community-based, family-centered, comprehensive, coordinated, and culturally competent, and we value the critical partnerships between families and professionals, so we work at various levels throughout the United States. We work at a national level. We also work at a state level. We have coordinators, or chapters, in every single state and the District of Columbia and the Virgin Islands in Puerto Rico, of family members who are there to speak on behalf of children and help other family members. Today I’m going to talk to you kind of at two levels of two different activities that we have engaged in. The first one was at a state level that--what we partnered with National Center for Cultural Competence, the state Title V agency to look at cultural and linguistic competence in that particular state, and you can guess, probably, by the picture of what state that was. And so we were very happy to be there as part of the partnership team and looking from the perspective of what do families want and what do families need? And we used existing organizations--cultural brokers within the state--to conduct family focus groups and we had the agency personnel involved, but they were there just to meet and greet, and basically then stepped out so that families could be very open and honest with about the services that they are receiving, because many times families become intimidated by agency personnel, or intimidated by the system. Maybe because they don’t understand it, or maybe they’re also afraid of retribution in case they say something, they might lose their services. So we thought it was very important for families to be there and to be able to speak freely and have a safe place to voice their opinions. Well all in all, we were able to help facilitate that process in the focus groups and the information that was gleaned from those focus groups was then incorporated into the activities and plans of the state to get more families involved, and particularly from more culturally diverse backgrounds, and we thought that was very important, and we’re trying to do that at various states, and that’s just one example that I wanted to share with you. The other thing that we did was what we call a FIPPS survey, and we did do a survey. I know Wendy said she did a query, but we just did a survey. This survey was funded through the Maternal and Child Health Bureau for us to look at what Families in Program and Policy--and that’s what FIPP stands for. We surveyed maternal and child health programs and children with special health care needs programs. And I pulled this slide just to give you an example. We surveyed all 50 states. We had responses from just about all 50 states and we looked at what special initiatives some of the states were doing. Some of those--we had them list some of their special initiatives. Some said they were doing Bright Futures, some said they were looking at racial disparities, some said they were looking at CHP services, tobacco cessation, very special initiatives. So what we did on this slide--excuse me--we pulled just two of them and you can see from the racial disparities that that was a special initiative that most states were focusing in on. Almost 100 percent of the MCH programs said they were focusing in on looking at racial disparities. A little over 70 percent said they had families involved in that initiative. Now for us, we would like it to be higher, but we were very pleased that at least 70 percent of the programs had families involved. If you look at the next column, it’s kind of the pink column, it’s looking at children with special health care needs. Almost 70 percent of the children with special health care needs programs said they were looking at racial disparities, and about 68 percent of them had families involved, and for us that was very important for us to be at the table as family members speaking on behalf of children. The next slide that you see--we did a whole series within our survey of questions when we asked Title V and we asked MCH programs about how do they think they’re doing in the performance measure, particularly within the block grant of getting families involved. And I want to draw your attention to at least the first bar graph in looking at cultural diversity. What we asked states was to please score themselves on how they felt that they were looking at cultural diversity and family involvement. The top line--the blue line--were states scoring themselves higher than what families scored themselves, so it was a big discrepancy there. The orange line was states scoring themselves the same as how families viewed them, and the yellow was states scoring themselves lower--that families thought that they were doing much better than the states actually gave themselves credit for. So I wanted to draw your attention to that, the different perspective from the state versus the family perspectives on that. We also put up a slide from our survey that--how families contribute to the committee’s task forces and groups. And you can see from this information about how families were involved. Were they expressing their family concerns, were they review and developing policies and procedures, looking at publications and materials, or commenting or acting on proposed legislation? The next slide--oh, okay, this came from a quote from an MCH program that says, “If we don’t involve families in re-tooling programs, protecting funding, making programs culturally relevant, we are missing the boat.” We do involve families at the local level, but it is very difficult at the state level. And many times in working with the MCH and the Children with Special Health Care Needs programs, they have indicated to us that it’s very easy--that it’s easier for them to work on a local or a community level, but it’s much harder at the state level, and the reason for those is some of the obstacles that families face in becoming involved, and I’m not going to go through all those. You can look at your slide to see, but a lot of times, it’s time, it’s transportation in getting families involved, and particularly doing outreach to families from culturally diverse backgrounds and getting people up to the state capitol to be able to advocate for a particular piece of legislation, or having families take off time from work, or putting one more thing on their schedule within their daily routine and it becomes much more difficult, so those are just some of the difficulties and obstacles. Another thing that we found in our survey is that many times the meetings are always held in the larger cities, or they’re held at the state headquarters, and they’re not held in the smaller towns were families can participate. Many of the families work and so for them to be able to get to meetings to be able to provide their input was very important, but yet many of the programs said because of the budget constraints, they didn’t have the financial means to do that, to have the families involved, so we want to close the gap. And one of the things that we’re doing at Family Voices with the wonderful technical assistance from the National Center for Cultural Competence, is for us, as a family organization, how can we outreach? How can we develop strategies that not only are going to be helpful to us as a family organization, but strategies that we can develop to help all of you at state programs get more families involved? And so we’re working and, and with the National Center for Cultural Competence, and they have graciously offered us some technical assistance, because as Diana said, we’re taking those baby steps for us to, even as family members, we need to do the outreach. There’s many more services out there, there’s many more families that we can reach, but we know within the partnerships that we develop that we can hopefully close that gap, and so we’re looking at within communities, how we can foster new relationships. How we can go to maybe the church groups or to the local communities, or groups where families do gather to get their services, public health. Not necessarily always sub-specialty clinics or things like that--also looking at community brokers. We feel that that’s much better in the outreach strategies that we’re looking at to work with members of the community, someone who is trusted by the family member, who can do that outreach and share that information. So as you go through our laundry list, and as I said, with the help of Wendy and her team, we’re trying to put some outreach strategies together so that we can make sure that families are at the table, because what’s so important for us as family members, is that we’re involved in the process, that we can help you at the state level, implement the services that you’re geared up to do, and we can also be there to be your advocate in partnership with you. I know many times you might not be able to go to the steps of the capitol. We know many times you might not be able to stand up in front of a meeting and say, “That’s not right.” But as family members, we can do that for you. So we’re here to help in any kind of way we can, and we want to share our expertise as a mom, as a dad, as a grandma, as an aunt, as an uncle, to be able to say we’re here to help you outreach. We’re here to help you get the services out there to our children with special health care needs. Thank you.