AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
NORA WELLS: Thank you, Diana, and thank you, Juno.
And I wanted to try to think with you about some of the perspective of how Family to Family Health Information Centers and family organizations could help Title V agencies really document some of the things that both families are doing and how it reflects family needs that can be part of what we all have to do as Title V agencies to report on family needs. I think it's a wonderful resource, and we'd like to have as much opportunity to work together as possible.
As Juno said, I come from Family Voices as well, and I'm at the national staff. And one thing that the national Family Voices staff has been asked to do through our Family to Family Health Information Center cooperative agreement with Maternal and Child Health is to provide some guidance to the funded Family to Family Centers and to the whole network of family leaders that make up Family Voices in how they could document what they're doing in ways that could be useful to others.
This is a challenge for all of us, and it's kind of the ‑‑ something that's becoming more and more important as we design programs and as we basically defend programs. As Marion Wright‑Edelman said this morning, we have an enormous task ahead of us to be sure that we can articulate clearly why it's important that funding go to programs for children. We have to be able to document the number of people that are being served, the ways they're being served, the impact of the money that's being spent.
So Family to Family Health Information Centers, as Diana mentioned, started out with funding from Maternal and Child Health Bureau, the source of so much of the real progress that's been made for kids with special health care needs and, really, for all kids. And those six funded Family to Family Health Information Centers are all still going, and there's one year left in their funding.
The Center for Medicare and Medicaid Services has taken up the process of funding some of these family organizations, and now, as Diana mentioned, have funded an additional 19 in two cycles. And I believe we have some of the funded CMS sites here. Somebody who is a CMS site want to raise your hand? We have Colorado and ‑‑
UNIDENTIFIED SPEAKER: Wisconsin .
NORA WELLS: Wisconsin . Excellent. Okay.
So Family Voices is a national organization, as Juno said, but it's an unusual position in one way because we don't have the funding to provide funding. What would be ideal is if we could really ensure or provide funding for every state to have a Family to Family Health Information Center or a place where family leaders could be paid for and be able to organize the job and the work they do to help other families in their state. But Family Voices doesn't have that money. We've worked very hard to try to get that money allocated by various government agencies.
But what we do have is we have some money to provide some guidance and some technical assistance. And given that we recognize and we were asked to look at how important it was for us to document what family groups were doing and how it could be useful within the states, we developed a variety of data tools to help family leaders, and there were two purposes behind it.
One is to try to be as specific as possible what would help a given state document what they do, but, even broader than that, how could we develop tools that we would be able to aggregate some parts of nationally so that we can show in a bigger way the picture of what family groups are able to do. And those two things coincide in some ways and are slightly different in other ways.
But just to tell you a little bit about what I'm going to show you today, the data that we ask our family groups to provide ‑‑ and they really are only the Maternal and Child Health Group, which is mandated to provide this. Everybody else provides it as a volunteer ‑‑ is submitted to Family Voices quarterly, and then we aggregate it and try to provide a summary or some trend analysis, and we try to give back to the states some information that they can find useful.
Well, what are we asking the states to report on? Now, any of you who are doing reporting from within your agencies know how hard it is to decide on just exactly ‑‑ unless somebody tells you exactly what they need to have reported on, you have to think through what needs to be reported on in order to know what's going to ‑‑ to think about what will be helpful in the long run.
Well, as Juno mentioned, one of the big things that family groups do is they hear from families. They hear from families often by phone, by e‑mail, they meet families at meetings, and they hear about problems families are having. And I've always said, and I've been in on parent organizations for a very long time, the day your telephone stops ringing as a family organization, you need serious rethinking of what you're all about. Because it's by listening to the people who are experiencing the issues that we're able to identify what might be some of the things we need to do.
Would you agree with that, Juno? I think that's absolutely a critical piece of family work out in communities.
The kinds of things families call about? And we have other family leaders here. Well, we're finding that one of the key things families are calling about, and I think Marion Wright‑Edelman talked about this, is the need for funding for medical care.
This is a major crisis in our country. And by documenting what's happening, I think we have some ammunition to go forward.
The other very big area that families call about is access to community services. Often they call because they want to talk to another parent, as Diana mentioned, we have heard that over the years, and also we hear a lot about navigating the system. It is a very complex system out there, and an individual family begins knowing nothing about how this system might work for them.
We also hear from lots of professionals. And professionals call trying to help other families or they call trying to help families participate in a more program and policy way on a committee or in a meeting or to review materials or something like that.
So those we thought were certainly very important areas that we probably should try to figure out how to document. We also decided that another important area is when this family organization hears from that family, they do something about it. They listen and they provide information and assistance. So those we thought were certainly very important areas that we probably should try to figure out how to document.
We also decided that another important area is when this family organization hears from that family, they do something about it. They listen and they provide information and assistance. And by documenting the kind of categories of information and assistance they provide, we can look at that and say, well, then we can see the kinds of things parents are calling about. And as you look at that over time, you see there might be a big blip in a certain area about what somebody is calling about, and that can help us know what the real needs are there.
We also focus within Family Voices particularly on health care financing because, as I said ***(*) and I mean families in an aggregated sense, about how various changes in programs and funding were affecting people.
And then we wanted to try to help these family groups document the kind of proactive things they do. They participate in all kinds of meetings, they participate in list serves (ph), many of them have web sites, they reach a lot of people through newsletters, and we wanted to try to document what was happening.
And some of the information I'm going to show ‑‑ I hope you had a chance to take this little pamphlet. We put together in a pamphlet a year of the data that family groups gave us. And the family groups that are summarized here are the Family to Family Health Information Centers, and those were the first six, and then the second nine that were funded, because the last group of ten were just funded last October and have just gotten up and started to collect some of this information but will continue to provide, you know, analysis and try to compile their information as well.
As I said, we have a lot of other family groups out there who are either within health departments or who are volunteering or who are in some way funded and another way, like a state way, and they are also collecting information, and we're trying to find as much consistency as possible and compile this information for everybody.
But this was particularly to show the funders that the money they're spending on these Family to Family Health Information Centers is given something back to them.
And what I'd like to help think with you today about is in looking at this information, can you see ways that this kind of information from your particular state, if you're from the state of whatever, how would this be useful to you in the work you do, in the kinds of ways you try to compile information about what families need in the ongoing needs assessment process that you have undertaken?
As I said, the first thing that we ask family groups to tell us is about their request for assistance. And as you can see on this chart, between July of '03 and June of '04 there was a steady growth, especially in the Maternal and Child Health funded sites, in the number of requests per quarter. This probably reflects, most likely, the growing expertise of these groups and visibility of these groups as they got funding and got their expertise out there.
We asked these groups to tell us how often people call them, because in many, many, many cases it isn't just one phone call that helps a family solve a problem. And any of you who have hotlines who are paying attention to your hotlines or if you have a system for categorizing information that comes in, you know that that family that gets that information the first time is most likely going to be calling you back about something, and often it's about the same issue that they need help with. And professionals, as well, often call more than once.
So this is just to show you that, on average, families call 2.2 times and professionals almost 2 times, and that usually breaks down to one family who calls seven or eight times and another family who calls only once.
The family groups are hearing from both families and professionals. And this is a wonderful tribute I think to both our communication mechanisms out there. I mean, professionals know they can call these family agencies and they can get information about it for an individual family, they can get information about programs and services. They'll see things from an new perspective in talking to these families groups. Plus, they're looking for partnership. They're looking for people to be in meetings and committees and to review materials and to take part in things. So I think it's excellent that we can now document that families ‑‑ that professionals are really reaching out to family groups to get information and support.
What kind of information and assistance do these groups provide? Well, as I mentioned, the topics of information assistance cover a broad range of topics. I think I mentioned that consistently in almost every state we see the same kind of pattern. Health care financing is a key, key area, how to get payment for kids' health care needs.
And as we know, this is an issue across the board for all children. For children with special healthcare needs, it's a particularly heightened issue. We have a great variation in the way services are paid for and even in the kind of services that are paid for. And so there are plenty of calls coming in on that.
And the other thing is community services, there is no central source of information despite the fact, as a country, we have tried over and again to do this. My son is 32 years old, my son with a disability. He was diagnosed when he was five months old, and I joined a parent group right after that, and I can tell you the conversation from the first meeting of the parent group, long before I knew anything about computers or that you could store information in any centralized way, it was always about how do we find the information. Now, computers have made a vast difference, and there's a lot better access to information, but the information is still piecemeal. It is still about a particular thing, and we don't have an integration of the systems that would help people.
So families looking for help and guidance in navigating those systems that I think ‑‑
Juno, would you say that's probably one of key things that a group like support for families and Family Voices of California is able to do?
We ask our families ‑‑ I think I saw Wendy ‑‑ we ask our family groups to try to help us understand who are the people who call them. This is very tricky for our family groups. Many times it's not something where they have an opportunity. It's not an official call. It's a call where a family is really seeking help, and the family on the other end of the line's most important task is to listen and not to intrude but to try to understand and then move ahead.
So we're at various places in how we're able to distinguish who the people are that we serve. But our family groups really do try their best to document a range of things about the families that they serve. We're not filling out any of the applications, we don't have any information about your income or anything, but through various means I think the family groups really feel that they are reaching a variety of diversity in terms of communities.
Many groups vary in this, but I think they feel that they are reaching a variety of locations in the state, rural, urban, and various kinds of things. They try to target certain outreach. And the report that they're coming up with now that approximately 45 percent of all the families they serve are from under‑served communities, that includes ‑‑ if you look at a rural state, this is an aggregated figure from the 13 states that reported in this, and some of those states were extremely rural, and they have ‑‑ they indicate that they're serving rural people. So that, in their category, is a category of under‑served. So that's a very heavy under‑served. But I think they're trying very hard to reach a variety of people.
I put in a few quotes because we get wonderful quotes from the family groups. And here is one from the Nevada , which is a
CMS‑funded site. "Culture disparities tend to be a big issue for families in rural areas. Low income that are racial ethnic minorities, these families and their children are falling through the cracks of our health care system."
The topics of information provided. These are just a very few. These are the top categories that people mention. There are many, many more and much diversity in the topics, but, again, healthcare financing is by far the biggest one.
Parent to parent support, trying to be connected with another family, and access to community resources are two very big categories.
Disability specific. Parents are still being given, of course, a diagnosis, and they want to find out is there any way they can talk to another parent or find out more about that specific diagnosis.
All of our children are in systems across the board. The same child that goes to the hospital all the time goes to school. School is one of our biggest kinds of issues. We need an integration of the information about the school services, the health services, how do those kind of relate. Because as Marion Wright‑Edelman said, we're talking here about whole children and whole families, and we know there's many, many aspects of their lives that are impacted by having special needs.
We have been trying to understand how we can take the information that families provide to us and think about it in terms of progress in the performance measures. And one way we've thought of, and we'll be thinking more about how to do this, is we can document the kinds of calls we get by the performance measure categories, and we can think then about what that means.
Now, we're at the beginning of this information collection. So some of the information collection is dependent on how well our organizations are out there on a particular issue and how well they're out there with various groups, and so that's how they're getting their calls.
But, basically, as I mentioned, community service and parent‑to‑parent support are the ones that we have a lot of calls on. Healthcare financing we certainly have a lot of calls on.
EI is, of course, a smaller population because we hear from families across the lifespan, particularly children, but we also hear some, so EI screening. We get calls on medical home, and we do a lot of things on that, partnering with professionals, and transition to adult services.
We get a lot of calls in helping review materials, a lot of calls on that, and that is a growing field. And I think that's an indication of the growing partnership that is out there. The people are looking to family groups to really document what they're writing about, the materials they're developing. Even professional articles are relevant or are on target.
As I mentioned earlier, we do a lot with trying to designate the kinds of problems in healthcare financing that people are calling about. This has been somewhat challenging because we have so many different groups and they have so many different ways they can collect information. But just to give you an example, the majority of calls that we're hearing about, problems with healthcare financing, are coming from the public sector arena.
You could interpret that a lot of ways. One is, for children with special health care needs, a lot of children are served by the public sector. A lot of the kids are on Medicaid, either directly on Medicaid or they're on an SCHIP program or they have a waiver of some kind and they're on Medicaid.
This education pie is the pie of health‑related services in school. You know a lot of those health‑related services in school are actually paid by Medicaid, so you could pop that over into the Medicaid SCHIP Title V spot. But the education area is ‑‑ I'll tell you a little anecdote. When the special education ‑‑ I was around before any special education models were written, and, actually, I had a young child when the special education ‑‑ special education law was being written in the state of Massachusetts . The first one was in Pennsylvania . And my son has cerebral palsy, and when the law was being written, we put in the Massachusetts law this language about health‑related services and the need for payment for health‑related services. I was a young chicken then. I was like 23 years old. And I'm saying well, now, that strikes me that that is a health insurance thing. But, of course, health insurance isn't interested in paying for physical therapy or occupational therapy, and a lot of them don't pay for speech therapy at all. So it certainly is important in the ‑‑ but I said, well, how do you suppose we're going to get a coordination between the school and the health insurance company? That is a totally naive young person saying, well, maybe there's going to need to be some negotiation that goes on here.
Well, do we still have that problem? Yes, we do. We can have people who have Medicaid and private insurance and they've got an IAP in their school that says they need speech therapy, and we can have arguments going on and no resolution to who should be paying for the speech therapy or how many times a week the speech therapy ought to be provided. We get a lot of calls at Family to Family Health Information Centers and other volunteer parent organizations about health‑related services in school.
Not that there aren't a lot of problems with private insurance. There most definitely are. And 60 percent of kids with special needs are on private insurance. But in our health information centers we do hear a lot about the public problems.
This shows the kind of growth that we've seen in documenting these problems by quarter. Now, when you look at this and you see between July of '03 and June of '04, there's been quite a growth in the number of problems being recorded, I think that's because of two things. One is we're better at reporting things, we're better visible, so we're hearing from more people. But it's also important to note ‑‑ and you'll see in another little graph ‑‑ I think there's some changes going on, and we're hearing from more families because there's some changes going on.
We ask families to give us anecdotal information as well, summary impact kinds of things. Here's an example from Vermont . The families that are reporting problems with Medicaid are reporting a number of issues. We're finding that families are being denied a number of services when they would have been provided those services a year ago.
This graph shows you over the year the kinds of problems that have been reported by Medicaid about Medicaid, SCHIP, and Title V. And I wanted you to see it not because we're claiming that this is, you know, absolutely scientific, but I think it's a trend that is ‑‑ an indication of the facts that it's important for families to be listening and hearing and reporting this information because this is useful information for the future.
If you notice that purple line on Title V, in June and July it starts, and it dips down a little bit and then skyrockets up in April and June in that quarter. And what was happening is there were a number of states where Title V was coming under a lot of pressure, and families were being told that their services were being cut, and they called family information centers to try to find what were they going to do next, what could they do to try to support the program, what was really happening here. Also similarly in Medicaid.
You know, if we don't document what we hear from families ‑‑ and we have to set up systems to do this ‑‑ if we don't document that, we're not going to have any case, we're not going to be able to say to those people who are trying to make these decisions, well, this isn't really going to impact anybody. So I think it's really important that we figure out how to do this together.
So what do I think is the value of data? The request for assistance of family groups here indicate the need for the kind of information and support the Family to Family Information Centers provide to both families and professionals. There is a real need out there for families to be able to connect with family groups.
The topics of information that we provide information on indicate the needs and the progress toward the development of a system of care and youth for children with special healthcare needs. The issues in healthcare financing that we're hearing about can really, as I just mentioned on that graph, help to identify program and policy changes that are affecting families. And we have to refine a system so that we can really keep our ear to the ground and listen to those families carefully so that we can use that data when we need it.
And as I mentioned, the family activities ‑‑ and you'll see in a minute the kind of numbers we have there ‑‑ really show the impact and the kind of reach that these family groups are having.
So Diana said, you know, what are some of these groups doing to share their data and their information with the Title V agencies? And that's really what we are all about here. And our Family to Family Health Information Centers that Family Voices is working with ‑‑ and many others, because it's not just these funded centers. We have sitting right here in this room some family leaders who are working very closely with their Title V agencies to provide this same kind of information to them.
And maybe in a minute you can speak about some things you're doing, Ruth and Susan.
But sharing data with the state Title V program provides information on family needs that can help you with your block grant. You are supposed to be assessing the needs of families. And I know there's a lot of ways you're doing that, and I know there's lots of ways you're calling on families to help you. And family groups themselves have mechanisms and ways that they can do that and that they are doing that.
So many of the these family groups are taking these reports that we're helping them put together for their states and they're sharing them with their state Title V program. So it's just another source of information you have about what families need in your state.
Family to Family Centers take the data that they've got and they augment it with family stories to provide a very powerful picture. And one example of this is Florida , where Connie Wells has worked with a number of other advocates in her state to put together a system for helping families tell their story, as well as using the data that the family center collects as numbers of what's happening.
And there's many sides to think of when you're telling a story. One is, as a family group, we have to think right off the bat, how do we offer that as a possibility to a family and how do we help a family do it if they want to do it? It's not just ‑‑ and I've been asked many times to tell my story. It's not just like it's that comfortable all the time to talk about something that's very personal to you or to be interviewed by the media and then see what you said in the story and you say "But I didn't say that. That's not really what I said." So families need a lot of help in being able to tell their stories.
UNIDENTIFIED SPEAKER: (Inaudible).
Right, Diana. Thank you.
One of the big uses that Connie and other advocates in Florida were making use of with the family stories, first they had a protocol for how they helped families identify whether they wanted to do it, and then they'd help the families do it, but families were using those stories in the legislature to help others understand what the impact of what was happening in Florida would have on these families.
As I mentioned, this one about seeing the changes in the data collection, the reason we do it quarterly is because it helps us to kind of ‑‑ we are trying to get handle on exactly how to do it, but doing it quarterly help us pay attention to changes. And I think it helps the states pay attention to changes that are happening within a short time frame.
We, as I'll show you in a minute, collect information on the kinds of meeting participation that families had. Again, it documents how much families are emerging in leadership roles. And using data to testify in front of legislators is another use of it.
Family leaders tell us about the kind ‑‑ they report on the impact of the activities within their states. And here are a few examples from our last data‑reporting period.
A family leader was working with a Medicaid agency and helped to identify a streamlined way for parents to share information about their primary care provider when the MCOs in the state changed. So you know how those conversations are when you're sitting there and the Title V agency and the Medicaid agency and the managed care plan are talking, and we're going to have to change this, and all of a sudden, well, we're going to send out a letter to everybody, and if they don't reply in three weeks, then we're just going to change their provider, and they'll get another letter about changing the provider. Well, this family member happened to be at that group and recognized that that is a very uncomfortable place for the family to be in when they get that second letter that says, oh, congratulations, we've changed your provider on you. And they hadn't even opened the first letter so they didn't know that was going to happen. So some proactiveness on the part of the family group was able to help some of that be avoided in that state.
There's no question that family activism has been extremely important in staving off cuts to Title V programs. I don't think there's anybody probable at AMCHP that doesn't recognize that as an ally in helping to keep the funding for these programs, the families themselves are among our best allies, and those are the voices we absolutely need to be sure that we have at the table.
Family leadership in helping to include diverse families. As Juno mentioned, they have their trainings in a variety of languages. They're trying to train families to take part in the program and policy discussions about things that impact families from the viewpoint of their particular culture.
Another state reported on the family leadership development impact on the development of waivers, immigrant eligibility programs and assessment tools for Medicaid long‑term care. So there are many, many places where I think families are sitting at the table and beginning to have an impact on these.
This was a campaign in a state when there was an effort to start charging hefty ‑‑ described in this e‑mail, in this report, as hefty premiums for Medicaid waivers, and there was a campaign to help the legislators understand what that would really mean to these families.
So in this particular year little report that we put out, what was our impact in terms of outreach? 1.5 million newsletters. This is 13 parent organizations with a small amount of funding. 460,000 handouts, 9,025 people reached on ongoing list serves,
5.8 million website hits, 189,000 people reached on over 4,250 meetings, workshops and conferences.
You know, those numbers kind of float out there. What do they mean? Well, one thing they mean to some people who look at them is, you know, there's clearly a lot going on here with these family groups, and perhaps that's something that we want to keep track of over the long run.
Just to help you understand this particular little piece of data that I'm giving you, the Family to Family Health Information Centers are located, many of them, or some of them, within other family agencies that operate with support from more than one funding source. I talked earlier about the special education law back there in 1972 and 1975. And at that time there was really only organizations for families around specific disability groups. People weren't joined around issues or around bigger‑picture things.
Since that time, there has been a variety of funding that comes along. One of big things is federal funding that goes to every state to help family groups train other families and understand the special education law. Those are called parent training and information centers. And you're probably all familiar with them. They've been a source of family leadership for many years in the country.
The area of children's health, though, has been an area where we haven't had funding like the parent training and information centers. However, some of the parent training and information centers who got that original funding from the federal government to help parents understand special ed. have been able to branch out and think about health issues. They've sometimes gotten funding from other sources. Mental health is now an area where funding is coming through. There is some state‑specific funding like Title V agencies or developmental disability counsels or regional groups, such as Juno mentioned.
Many of these family groups operate in cooperative ways within an umbrella family agency within their state, and the Family to Family Health Information Center is providing one piece of that, which is to try to help families understand the health issues. But as we've all known, these are integrated things. And the person who is calling on the phone does not want to know where your funding comes from. They don't want to be limited to only telling you, you know, the issue on one little thing. They've got a whole group of things ‑‑ they might not have electricity, they're going to be homeless soon ‑‑ there's lots of things that are important. And family groups I think are pretty much committed to trying to be as seamless as possible to the person they're helping to serve.
So if you look at this, and this isn't state specific, but if you look at these certain states that we've reported on here, some of them are very small. They're operating with just the 50,000. And some of them are bigger. They're within the bigger agency and they're able to parlay more a variety of funds. And some of them are very specific to health and some of them are integrated within agencies that also provide information about other things.
The data reported here, as I said, is about one year for 13 states. And there are many other things that these family organizations do that are not reported here. This is just aggregating a few of the data elements so that we can start to see that there's a value to being able to aggregate things nationally, as well as to think about how we want to collect data and use it on a state level. So that's just a few things for you to understand what this report is all about.
Here is another example from the state of Tennessee . Strict income guidelines placed on most services make working poor and middle income families ineligible for services, which places a great hardship on the family. It's tragic, we have actually taken a few telephone calls from these low to middle income families requesting information on residential programs or institutional placement to place their child because they either cannot afford to provide for the child at home or they do not have the physical or emotional support.
You know, again, this is the kind of thing in our system that makes absolutely no sense, but we certainly know that it exists. And there's plenty of things that don't make any sense in our system.
Tennessee has done a number of other things. For example, they've done their own survey of families within the state where they've collected information which they will share with the Title V agency. They've run focus groups for particular groups of families within their states, such as new immigrant groups ‑‑ oh, that might have been Florida . But anyway, there's another example of Family to Family activities that can be very helpful to Title V in thinking about your needs assessment.
As I said, many of these states are already sharing. If you aren't already linked up with a family organization in your state, I promise you, you'll find it a very rich source of information about families. There's lots of things I think you can do together.
I want to just point to one place, which is the Family Voices website. It's not on this set of slides, but it's on your first set that Juno had. And there's a part of that Family Voices website that's called The Title V Toolbox for Family Participation, and on that site there are a lot of ‑‑ and I have some handouts at the Family Voices little booth here in the room ‑‑ or outside, if you'd like to pick those up.
But anyway, there are a lot of resources that states have contributed, and they're posted up there, about things they do with family groups to help them in the work they do in understanding what family needs are. We've come a long way in my short time in this area of working with families and professionals, and I congratulate all of you, and I look forward to a lot more in the future.
UNIDENTIFIED SPEAKER: Thank you.
JUNO DUENAS: I just wanted to make a point of clarification. I realized, as I was presenting, that it may come off that we never really worked closely with our state Title V, and the truth is that over the years what we've done is we've worked out a system of providing support at the local level. So we actually have ‑‑ with the family resource centers, we have what we call parent health liaisons that work with the local Title V to be able to provide parent to parent information. I just wanted to make sure.
NORA WELLS: And Juno, let me just ‑‑ I always think of California as a little country unto itself. So compared to another state, I mean, you're talking mega population, mega distances. Working at the county level is where it's at in California . Those are all little states out there.