AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
JUNO DUENAS: Good afternoon. Hi. Thanks. So what I'm going to focus on is why partner? I'd like to give an overview of Family Voices for those who don't already know about it. I'd like to talk a little bit about the Family Voices of California, Family to Family Health Information Center. I'd also like to talk about why we're partnering, why Title V believes we're worthwhile in partnering with, also strategies for success, and then examples in California and how to contact Family Voices.
So Family Voices is a national grassroots organization that speaks on behalf of children with special healthcare needs. Children with special healthcare needs are those who are or at increased risk for chronic, physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally. We try to think of it as a very, very broad take on children with special needs.
In Family Voices of California, we're made up of a 12‑member panel coalition. Most of us are family members of children with special healthcare needs and are associated with Family Resource Centers which are funded by the Department of Developmental Services in California, and also parent centers funded by the Office of Special Education and Programs, and family empowerment centers, which are unique to California, which are funded by the California Department of Ed. We use the Family Resource Center Network, which is made up of 52 Family Resource Centers, as our template to create Family Voices of California. That's where we send information out to, that's where we get our input from families from.
Our goals are to improve policies and systems of care, to provide information and education to both parents and professionals, to promote family‑centered culturally‑competent community‑based coordination and quality care for children with special healthcare needs and to develop parent and professional partnerships.
So why the mandate? Where does this mandate come from? One place is the president's freedom initiative, which is recognizing that families are the ultimate decision makers for their children and encouragement of participation in making informed decisions. The one that I like more is Goal 2010, which says that families of children with special healthcare needs will partner in decision making at all levels and will be satisfied with the services that they receive.
So why is partnering with families promoted as improving quality services for the children with special needs? Because the family is the constant in the child's life while the services systems and the personnel within those systems fluctuate. The family is the axis, and the providers are the spokes. And that's not to demean anybody, but it's just to say that the family is at the center.
And healthcare is a daily thing, a way of life, not just a moment when a family intersects with providers or a system. So the perspective of the families is critical to ensuring quality care for children.
But why the mandate of partnering with families on all levels? You can do it in their care, but why do we have to have them involved all the way up? Because families remind us of the bottom line: the well‑being of our children. Families reflect the whole child and the other systems that are involved. Since families don't live in the box, they can think outside of the box. And once there is consensus with families and professionals, we have a buy‑in.
Families can give insight on what works, what doesn't, and why, often coming up with solutions, because families are solution oriented. I have to tell you, when my daughter's wheelchair breaks, we are so solution oriented. They can provide another pair of hands, and we can provide outreach to the other communities.
Okay. So we've got families involved at all levels. But why partner with an organization full of families? Because Family to Family Information Centers are a pool of families that have diverse perspectives, including linguistic, cultural, socioeconomic and different disabilities. We specialize in the support of families. We are experienced, we are skilled and we know firsthand about ensuring confidentiality because we have been the consumers that deal with it every day, as well as we can assist families to become more effective advocates for their children.
We connect with other families and decrease isolation, and we normalize the experience of having a child with special healthcare needs. We encourage confidence and assist family members to identify and articulate their perspective, and we promote and model family professional partnership.
In addition, we can act as liaisons between providers and parent support activities, and we bridge support from medical to home.
UNKNOWN SPEAKER: Medical to home.
JUNO DUENAS: Oh, that's what they meant to say was "medical to home."
We provide to families and professionals accurate, up‑to‑date information and community‑based resources because we're using them on a daily basis. We maintain resources such as resource guides or parent notebooks. We also keep up with acronyms and terminology. We can train families and providers about partnerships, about Title V services, because we've been around. We can assist in providing a history and a context to new families entering the system, and we can assist with coaching.
Sometimes we can assist in accessing resources to ensure family participation. I know in California , we often get the funding in order to have families be able to participate in groups like
Title V.
What are the strategies for success? It's really, really important for Family to Family health information centers and the healthcare agency, whoever it may be, whether it's Title V or somebody local, to work together to create and maintain a memorandum of understanding or some sort of written understanding of expectations. It needs to delineate procedures, exchanging of information about how you plan to work together, how decisions will be made, what will the scope of work be, and what are the roles and responsibilities, things like confidentiality. Make sure to have ongoing regular meetings to deal with concerns before they are a problem, and make sure to document all of those meetings, whether they're on the phone or they're more formal.
In addition, strategic planning works really well, especially if there's a good person who is facilitating. But if you can, identify vision together, identify the goals and objectives and measures of how you're going to measure your success.
Bringing families in on the planning, the implementation, and even on the evaluation. I can tell how serious a group is that wants to work with us depending on where they bring us in on the process. If they invite us in for a meeting and then they say goodbye, we know where we stand. If they invite us in on a planning and then we kind of take part on the implementation but they don't invite us in on the evaluation of the project, again, we know where we stand.
Practice the art of compromise and negotiation. And I think this is the hardest thing. Because we come from different perspectives, sometimes we're going to disagree, and we have to all be willing to do that, because, otherwise, what's the point? So we're going to disagree, but it's how we disagree and how far we go with that conversation and that negotiation that will make a difference for families.
We need to respect each other's opinions. We need to accept that when families see something there's a possibility that it's a trend and not just assume it's a one‑time thing because this family said it. We have to assume that there's a trend behind it.
And we need to make sure that we provide resources so that we can have really good parent participation. I've got to say, it's getting harder and harder for families to participate because there aren't the resources to back it up. I think volunteering is a thing of the past.
So activities at our Family Voices of California Health Information Center. We provide information and support to families, we provide education for families. And education includes things like tele-health, self‑advocacy, leadership training, medical home, Goals 2010. We have a number of languages. Most ‑‑ I think almost all of our trainings are at least in Spanish and Chinese. There are other languages that we also do the trainings in.
We have multilingual materials. We do information for professionals. Many of our calls are from professionals working in the system trying to understand where to get additional resources.
We also do education for professionals, which includes training such as family‑centered care, medical health home, Goals 2010. We also developed what we call the Healthcare Connections Manual, which is a manual around family‑centered care and can either be an all‑day training or an hour training depending on how you want to use it.
We have an annual statewide healthcare summit where we bring professionals, advocates, families, legislators together ‑‑ in fact, it's in a couple of weeks ‑‑ and sit around the table, basically, and discuss the issues and think of strategies, and then the next day we have a slew of families that come up to the capital, Sacramento, and visit legislators with that information in tow.
Additional services are the Parent Health Liaison Service. And I'm going to go into a manual that we developed to do this, but this is basically our model of parent‑to‑parent support. We call it the Parent Health Liaison. For those people that are in that position, we have a semiannual conference. And interestingly enough, we've been focusing on Medicaid.
We do monthly conference calls for these families across the state so that they can be abreast any of changes and issues that are coming up and also strategize together.
We have done work for Title V such as reviewing all of their materials to see about family centers. We belong to dozens and dozens of committees and planning bodies. It includes the Medical Home Project. We belong to the Association of Children's Hospital, managed care committees, AAP, California Children's Services, which part of our Title V, our interagency coordinating counsel.
We also have two listers ‑‑ we probably have more than that, but two major listers. One is for Families and Advocates, and other lister is for the Parent Health Liaison.
We also use Your Voice Counts, which is the study that Diana was talking about. We use that constantly because it really does articulate what families express as their three major issues: information, coordination of care, and access to specialists.
We also have used the manual Beginning the Conversation, which was work with managed care and Family Voices families.
And most important is our work with Title V, which we saw a need based on what families had been telling us and saw an opportunity in the Champions of Progress to be able to get money to be able to support strategic planning for the whole state. And in California , that's no small task. But we're bringing in all the different departments that serve children with special needs, we're bringing advocates in and families in to look at really serious strategic planning. How can we better work together, what's already been done, where are the gaps, and what will the next strategies be?
In addition to that, because that has been working really well, Title V has brought us in to their assessment, which was really a first for us in California and is really, really exciting.
I want to talk just a little bit about the Parent Health Liaison Manual, what the table of contents are, in case there's anybody that is interested in this. I'm assuming that you're here about partnering because either you haven't done it or you're interested in new ideas.
The manual we use in a lot of different ways. One is with families to help encourage them and coach them on how to participate with a health agency, but we also use it with health agencies to help them understand how to work better with families. The very first section is family‑centered care, and it has a definition. It talks about elements and key indicators, principals, and it talks about parent‑professional collaborations and indicators of cultural responsiveness.
The second section is Parent Health Liaison Services, our vision of what a statewide system would be. And our vision is that instead of the healthcare agency hiring families from within, that it contract with Family Resource Centers that are independent bodies and do it that way, because it helps support the family to really stay like a family. Once you're in an agency, you sometimes get pickled. There's no other way it say it. And this way, when the family gets pickled, they're pickled in the Family to Family Health Information Center.
It talks about how to be in action with families, how to work with families, how to do support groups. We have sample job descriptions and job announcements, and then we have an orientation checksheet. It's not just enough to hand a family a resource guide, but we really need to take seriously how much training it takes for a family member to be able to provide appropriate family‑to‑family support.
The next section is Providing Parent Health Liaison Services to Professionals and Health Agencies, and it talks about what's it like to be in action with healthcare agencies, it talks about serving on committees and planning bodies, it talks about how to get started in your community.
And then we have a sample memorandum of understanding. We also have protocols for providing Parent Health Liaison services and how important it is for families to know their boundaries, things to do and not to do, a referral process protocol and a sample referral form, a confidentiality protocol and also a sample form.
And last, but not least, in case you want to contact the Family Voices in your state, here is information. And our web site right now is under construction. We're redoing it. But we will have it up very soon, and we'll have our manual available to anybody who would like it see it.
Thank you.