The
Health Care Experiences of Families of Children with Special Health Care Need.
Results
ad Insights from the Family Voices-Brandeis University Survey
Originally broadcast: May 23, 2001
The speakers were Faye Eldar, Nora Wells, and Carolyn Brennan
Faye: Hello and welcome to our webcast from the Quality Community Managed Care Project from the University of Illinois at Chicago School of Public Health. I'm Faye Eldar, your moderator. I'm the Family Coordinator of the Quality Community Managed Care Project and I'm happy to be with you today. This is another webcast in our ongoing series in the Special Kids and Managed Care Project.
Today's webcast is about the Family Voices Survey on Managed Care Health Insurance and Children With Special Health Care Needs. And I want to add that it is an historic event today. We have an all-parent cast on our webcast. Our speakers, Nora Wells, from Family Voices at the Federation for Children with Special Health Care Needs in Boston is a parent. Carolyn Brennan from Shrewsbury, Massachusetts who is the parent speaker, and I am also a parent of a child with special health care needs, and I'm a Boston native. So it has special importance for me.
I remember in 1986 the very first national parent meeting that I went to, the Parent Network of the Association for the Care of Children’s Health was where I met Nora Wells.
Now Nora, we'd like to get started with you today and first of all, what is Family Voices?
Nora: Well, thanks for asking, Faye. Family Voices is a national grass roots network of families and friends of children speaking on behalf of children with special needs. We're 40,000 strong around the country and we're organized with a few national staff and state coordinators in every state who help provide information to families, and help families take a role in their child's health care and programs and policies around children with special needs.
Faye: Nora, where did the idea for the managed care survey come from?
Nora: Well, Faye, we’re noticing in Family Voices, as we talk to policy and program makers around the country, that many people came back to the question of [that] there was very little data on children with special health care needs out there. So, what was out there seemed to be focused on a kind of narrow population such as children who were in a particular program, for example, the SSI program or children who were served by the Children with Special Health Care Needs program in a given area or state. But there wasn't a source of information about a number of children with all kinds of needs and being in all kinds of programs. And that's when we came up with the idea of doing a broad base survey which we call Your Voice Counts, the Health Care Experiences of Families of Children with Special Health Care Needs.
Faye: And can you tell us a little bit more of what was involved in moving the survey from being a good idea to finding a sponsor to implementing it. I know that it did take a number of years.
Nora: It did. Well first of all, as family members, what we did first was to design a small survey and ask a number of family leaders to fill it out. And that was done in 1995. We got some help from a researcher in the national scene, Peggy McManus, with that. And the next year we decided, well we collected some interesting information. We found some interesting things. And we moved on and worked with a group called New England Serve, which is a New England based group that does a number of projects on children with special needs. And we received funding to do a study using some tools developed by New England Serve that would be carried out by families. And the Annie Casey funded that Foundation. And when that was finished, we realized that, again, we had some interesting information from four cities. Could we do a national study? And we spoke for a number of months with the Heller School of Brandeis University and they were interested in an academic institution and an advocacy group having the chance to do some research together and that's how we put together the team that actually sought funding and developed this particular survey, Your Voice Counts.
Faye: And who were all the people who were involved in implementing the survey?
Nora: Well that was a wonderful partnership among a number of people. As I said, we had an academic institution, the Heller School at Brandeis University, and Family Voices, which is an advocacy organization. But then we really relied on the Family Voices state coordinators in the 20 states who participated in the survey. And the Title V agencies in those states to help with the sample selection and implementation on the on the grass roots level.
Faye: So it was a very complicated and concerted effort. Who paid for this survey to be done and how much did it cost in total?
Nora: Well that's a great question. We were funded to do the survey by the Packard Foundation, the David and Lucille Packard Foundation in California. It was part of a large project. So to actually come out with a cost for what it cost to do the survey, I really can't itemize it in that way. We spent three years on the project in the partnership between Family Voices and Brandeis and during that time, we developed, as I said, this academic-advocacy partnership. We undertook and completed this particular survey and did the analysis on it and then we did a number of other things which included interviews with managed care companies around the country. So it's hard to come up with the actual cost of the of doing this particular survey.
Faye: And what is it about this survey, Nora, which makes it really unique in the realm of academic research?
Nora: Well, Faye, at least from my limited experience, most of the things that go on in research tend to go on within a particular realm or particular world. So there is research that goes on with academic researchers designing the questions and carrying out the survey and and analyzing the results. But what was really unusual about this project, is that we had equal partnership between a family advocacy organization and a very experienced social policy academic research center. And blending those two sources was a very challenging task because there were many different interests and pressures on both of those groups. But it made for a very powerful partnership.
Faye: Well that's very interesting. Carolyn, now I'd like you to please introduce yourself and tell us a little bit about your family, your child with special health care needs and then tell us how you found out about the family survey and how you decided to participate in it?
Carolyn: Okay. I'm the mother of three children, my oldest of which has some severe medical problems. He has a trach and G tube feedings. He gets respiratory treatments every hour. We keep him at home thanks to a special program in Massachusetts that allows his nursing care to be paid for by the state. Our insurance company augments that.
I first heard about the survey, I think it was through the mail, and then it was followed up with a phone call and we feel it's really important that any kind of information that can get out there, gets out there. I'd never seen a survey quite like this before which was really kind of nice. It was a very detailed survey and it was in a very user-friendly way. You could read it and not have to spend ten minutes trying to figure out what the question said.
Michael's 15 now and we’ve been associated with the Federation and Family Voices for a very long time. So I felt very honored that they asked us to participate in their survey.
Faye: Had you ever been in any other surveys of families of children with special health care needs?
Carolyn: No I hadn't, as odd as that may seem. We've been involved with different groups, but this was the first survey that we were involved in. Now since then, there have been other surveys that have come to us, but that was the first survey and it's the only survey that we've ever had that actually looked at insurance issues.
Faye: How do you feel that this was pertinent to the experience that your family has had with insurance?
Carolyn: I think it's very pertinent because there's a lack of information out there of what insurances supply, what insurances don't supply and what type of programs are out there that are available that you can augment your insurance with. And I think it's important to get the information out there so that in states where they don't have things that can augment your health insurance, which they can look and see what's available and what other people are doing.
Faye: And does your son have employment-based health insurance or private health insurance in addition to his state program?
Carolyn: Yes he does. He's actually had, throughout the years, he's had a number of different insurance programs, probably five or six different insurance programs during his life. But they've always been-from 1988 on-augmented with a state program. Prior to that he didn't have a state program. He didn't have one that was we actually were trying to, we tried to receive Medicaid through the spend down program that they use for elderly in this state and practically went bankrupt trying to do that, because of our insurances at the time, we had two different insurances during that period of time and neither one of them covered any type of home nursing care.
Faye: Well, I know that's a really major unmet need for families everywhere. Could you tell us also, Carolyn, why did your family have five or six different insurance plans during this period of time?
Carolyn: Some of it was because we changed physicians. Because of Michael's medical needs, we couldn't really leave Massachusetts. The program that Massachusetts did have, the minor one that it had was the only thing that was available. We actually came back from Europe. Michael was born in Europe. We came back to Massachusetts to go to Children's Hospital and be closer to our family. The medical insurance that we had with the military, which was where he was, didn't cover a lot of the things that he had. Then my husband and I realized that we really couldn't leave Massachusetts, because of the medical expenses and the fact that at least there was a program within Massachusetts. So my husband and I both went back to school. And so we changed positions, and my husband became an attorney and I became a nurse, and so obviously actually we insurance shopped. Every time one of us changed a job, we looked to see which one would cover the most of Michael's care. And that's the one that we'd take. So over the years, we've had a few.
Faye: I see. So you're really very knowledgeable about insurance options and negotiating with insurance and you feel that this survey was really able to capture the extent of your knowledge and experience.
Carolyn: Yes. I think it did a good job. I mean I was impressed and I'm not easily impressed.
Faye: Was anything about the survey difficult or time consuming for you?
Carolyn: No it wasn't. I was surprised. At first I thought oh my this is awfully long. But it's not. It was very up front. it was very easy to follow. The questions required some thought but they didn't require me to go and, you know, rummage through my all my records that I had in my home. So it was a really user friendly survey.
Faye: Well that's good. I know sometimes you get asked things and unless you went back in your records, you wouldn't be able to answer them. How do you feel that you and your family benefitted from participating in the survey, Carolyn?
Carolyn: I think you always benefit whenever more information is put out, because people start to look at the information. And I think Family Voices has a pretty strong voice. And I think that, you know, I'm able to take these things and go to my legislator and say this is what they saw. This is what they did and this is how they got the information. And it allows me, it gives me some ammo to use if, that's what you want to word it, when I go to the legislators and say this is what they saw. You know, can you help us fix it?
Faye: You know there's a question that I discussed with Nora in one of our preliminary conversations last week and I'd like you both to address it. We're talking about, first of all, how you explain to a family what is research and then what if a family says to you: "what are you doing this survey for? What my child needs is some services. So why should I fill out your questionnaire? "I'd like to hear from each of you about what you would say to this person.
Carolyn: Nora, you want to go first?
Nora: Well, okay. It's a very good question, Faye, and I think it gets right to the point, that probably Carolyn and I both feel, is when a family has a need, it's extremely important that we hook that family up with somebody that can help them resolve some of the issues they have, because we have many families in our country who are not well served by our system at the moment and they really do need very concrete help in improving the situation for their particular child.
One of the reasons we formed Family Voices is because we also need to take all of those voices collectively and see how we can help the system understand our children better so that we can be working to improve programs and policies that will help all children in the long run. So it's a very good question from an individual parent and we would be looking hard to see how we could hook that individual parent up with some help to help them resolve their particular issue with their particular child's needs.
Faye: And Carolyn, what would you say to a parent who questioned you about what would be the value of participating in a survey like this?
Carolyn: The value in participating in a survey is it actually gives you a voice. Parents of kids with disabilities or even minor disabilities often don't have a voice and they aren't able to get their issues out. When you have a larger group, especially the group that put out this survey, it allows you to be heard. And if you're heard, then things are done to improve things. So that for parents, I tell whenever I speak with parents, I tell them the more information that you can get out there, and even though it may take a little bit of time to get these surveys in the long run. Now, certainly I hope to I try to help parents get the services that they need as well. But I tell them long term doing these surveys can allow these services to be put in place because then they have the data they need in order to prove that services are really needed?
Faye: Okay now we'd like to move on to talking about what would the major survey findings about health insurance for children with special health care needs and how the survey results have been disseminated. Nora?
Nora: Yes. well let's see. There we asked a number of questions on a number of levels, and one area that we asked about was how satisfied families were with the health insurance coverage they had and what kinds of things they were more satisfied with than others.
And what we found was that- well, we found one interesting thing-is that families when asked a general question were more likely to give a high rating to a plan if you ask just how satisfied with your plan are you than if you asked very concrete questions such as how does your plan do on helping you get hospital care your child needs, or specialty doctor care your child needs, or therapy services that your child needs. So we found that families were a lot more satisfied with things like hospital care than they were with things like their care for special therapies.
Another area where families were very dissatisfied was in the area of information about their plan. Clear information about what the plan covers, information about how to appeal for, ask for an exception to policy if they had a need that was not being covered by their plan.
We also found that the more managed the plan was, the more managed features there were in the plan, the less satisfied families were. And that, I think families gave us a lot of information as well about why that was so and some of that hasn't been completely analyzed. But those were some of the overall findings on health insurance.
Faye: Can you tell me what the role has been of managed care Organizations, either Medicaid managed care or private managed care companies, in doing this survey?
Nora: Faye, in actually doing the survey, they weren't involved, although, we did have managed care organizations take a look at the survey in advance and do some reviewing of it to be sure that we were asking questions in a way that made sense from the insurance perspective. But as I said, the survey actually covered a whole range of things. The insurance was one of them.
We also asked about other services and programs children had that were in the public arena. We asked about secondary kinds of coverage the families had and all of that information together gives a more comprehensive picture. But the managed care companies haven't done anything particularly in terms of implementing the survey. We have shared our information very widely with a number of kind of services and programs around, including public programs such as Medicaid and managed care organizations and in a number of quality measure kinds of forms, of how information is collected, on how satisfied people are with their plans. So we've done a lot of dissemination; but they weren't as involved in the actual implementing of the service.
Faye: I see. Now did the type of special needs that a child had have any impact on the family's health insurance experiences?
Nora: Yes, Faye, they did. What we found was that families of children who were less stable, these families were less satisfied. There were some other particular groups who were the least satisfied of all the participants in the survey, and those were families with children, who had autism, mental health and behavioral kinds of issues. So it did kind of pinpoint some particular children in our system I think who are more vulnerable to not getting the services they need through a present organization of services.
Faye: Could you explain a little bit more about why the families were not as satisfied for children with these particular type of special needs?
Nora: Well the interesting thing is, we haven't had a chance to analyze all of this completely, but what it appears in first looking at some of the information is that number one, I think we have some problems with expectations within our system of what families are going to be able to get in certain areas. And that seemed to be particularly prevalent in the mental health areas and children with autism who have some very complicated kinds of needs for support services, perhaps in the home or some behavioral therapy kinds of services. That seems to be a controversial area in our in our system at the moment, as to who should be providing those and how they could be provided to families. I think what we're hearing from our survey is that families are not getting what they need. We probably need to delve into it a little bit more carefully in terms of identifying what specific parts of the system we might make suggestions on improvement to.
Faye: So, well certainly, this is a very complicated issue and it involves social services, a developmental disability system, the educational system as well as the health care system.
Nora: Exactly. Exactly. As a matter of fact, the children that were in our survey represented children who tended to be at the more significant end of the spectrum in terms of need. These children in this survey many of them receive services from a number of different systems. They had health insurance. They might have secondary insurance such as Carolyn was mentioning through a public program. They also might be getting services in a number of other settings such as their public schools or the Department of Mental Health in their state or Department of Developmental Disabilities or mental retardation in their state. So there was a number of other sources of coverage for these children. And yet, we still have a system, which isn't really always providing families what they need.
Faye: And I think as being parents, we can all relate to this and know that there's never any system or any service that meets all of the needs. It's sort of like a patchwork quilt.
Nora: Right.
Faye: In different states, the navigation is different depending on what's available.
Nora: Right.
Faye: Now did the families, who participated in this survey, did they differ in any way from previous groups of families who had been surveyed about their children's special health care needs and their health coverage?
Nora: Well that's an interesting question. Again I think there's so little data out there in a comprehensive way on children with special needs that it's hard to say how these children differed because we really don't have that many basis of information. But there is the National Health Interview Survey, which is a population-based national survey that's done by our government and that asks some questions about children’s’ special health needs.
At the time it was done, there really wasn't a way of identifying who were children with special health care needs within that survey. In other words, that's a household survey that's done on the entire population randomly selected, and it did ask some questions. So, some analysis went on after the all the data was in to look at whom within that group could possibly meet, for example, the Maternal and Child Health definition of children with special needs, which is a broad -based -not a disability- specific-definition.
And I would say that the children in our survey are children with a more significant level of need than would be identified through a completely broad based children with special health care needs survey. But we felt that by doing that, we actually deliberately leaned in the direction of looking for children who might have more significant need because we felt that those children’s experiences would be in a way more enlightening to our system as to what were really some of the problem areas.
Faye: There's one other thing that I'd like for you to share with us about the families. As you know, I have been in this field for sometime, and I'm aware that the demographics of families who are usually surveyed related to children with special needs are usually very different from the demographics of the general population. In the Family Voices survey, the family demographics came closer to I guess you could call quote unquote" the national average." Could you tell us a little bit about that?
Nora: I think that we have a very good representation in the survey of respondents from a number of different groups. We have, similar, to the National Health Interview Survey; which as I said was a population-based survey. We have about the same kind of ratio of boys to girls. We have a variety of minority populations in the survey. We have families from the city, from the suburban area and the rural area. There's families from every income distribution and also the families, in terms of their education background, reflect quite similarly to a national look at what the educational level across the country is. So, we do have a variety of families in the survey which makes their responses, I think, all the more interesting because it's not really because of a family's educational background or income or race that our answers are interesting. It's because we have a widespread view of the country.
Faye: I think this is a very important feature of the survey and something that's important, because sometimes people might assume that this would be like other surveys that were on very small, limited populations that didn't represent the population as a whole. And can you tell us a little bit more about how family-centered practices were implemented in conducting the survey?
Nora: Right. Well in terms of family involvement and the design of the questions, what questions ought to be asked and how to ask them and how user-friendly a page was, it's wonderful, Carolyn, to hear that it was user friendly. We did work very hard on that, how to make the questions make sense to families and how they would be laid out on the page in a way that would be answerable. In that sense, I think about the family’s amount of participation. We had a number of pilots with families, and we had lots of input from variety of families about what would be a good way to ask a given question or what questions to ask. So in that sense, we had, I think, very family-centered policies in designing the survey and conducting it and carrying it out and we also worked with families in the analysis piece. One feature of having families fill out a survey, which would have been wonderful to do, in this would be to pay a family to do that, for asking for their time and it would be nice to be able to do that. Unfortunately, this project didn't have the finances to offer families a reimbursement to participate in this survey. But it is an excellent idea.
Faye: What has the response been from insurance companies to the survey findings?
Nora: I would say most people who looked at the surveys have found them very interesting. There are so many features and sides to what we asked, that there seems to be information in there that any number of groups find interesting. We have put out two basic reports.
Brandeis has a comprehensive kind of summary of the analysis that's gone on so far in the survey. And we put out, Family Voices put out, a family-friendly type of report which is shorter and in more useable every day type of format. And we find that the people we've shared information with, many of them have asked for more information or asked for more copies of the information and have asked us lots and lots of questions about it. So we found the response has been terrific to using the data and using the information.
Faye: Now I want to let the audience know that in the resource section of this web site we will have the link so you can get the survey analysis and all the detailed data and contact information related to the survey.
Now Carolyn, I'd like to ask you: have there been any differences in your family's health insurance experiences as a result of participating in the survey?
Carolyn: No, taking part in the survey gave me, you know, getting the results gave me information to work with my legislators with, but it doesn't change my insurance companies. They haven't changed what they provide. It may the one thing about it is, that knowing that there were other families that there were out there, it's nice to be able to know that there are other families in similar circumstances to yours. You sort of feel when you do a survey like this that there must be quite a number of us. But as to how it's specifically affected our insurance, it didn't really affect it at all.
Faye: Did you share any of the information about the survey and the survey results with your insurance company or with any professionals involved in your son's care?
Carolyn: I shared them with the physicians that Michael has at Childrens and I shared them with Michael's pediatrician. That's the only places that I took it to.
Faye: What was their response to that?
Carolyn: They weren't surprised. I mean, they work with kids with disabilities all the time and they work with insurance companies all the time, so they didn't seem to be surprised at all by the results.
Faye: And Nora, what are some of the future directions for using the survey results to make changes to improve insurance coverage for children with special health care needs?
Nora: Well, I think Carolyn hit on a couple of the uses that we at Family Voices find particularly compelling and that is we really wanted to put information in the hands of families that they could use as they discuss important issues with their legislators and their program and policy people at the state level.
Several other interesting kind of results that we felt in terms of the use of the of the information that came out of the survey was that two other very important national efforts were beginning to be under way when these results came out and we were invited as Family Voices to take part in some of those discussions. And those included the Consumer Assessment of Health Plan discussion.
The Consumer Assessment of Health Plans surveys are the surveys that managed care organizations are using in under the auspices of the HEDIS system, the National Committee On Quality Assurance (NCQA). In their accreditation process, they use surveys of consumers. They require managed care plans to use the surveys of consumers and at the time that our survey information was coming out initially, there was a discussion of whether it would be interesting, whether it would be possible to include questions about children with special needs in what was, at that time, a child survey. But it didn't have any specific questions or any specific way of identifying within a given health plan who were the children that might have more medical needs than others, that might have special medical needs.
So we were then invited to be part of those discussions and it's it's currently now gotten preliminary approval from NCQA that questions will be included in the tools that managed care plans ask their members to fill out in order to measure quality within health plans. So, we feel that is a very big step forward in helping to gather more information in our country about how our children are faring within given health plans. And we feel that having taken a role in this research project that we're discussing now helped us take a role and add to the discussion of how to develop questions that would be suitable within that context.
Another big national effort for collecting information is called the SLAIT survey. That is a survey that's being undertaken by the Maternal And Child Health Bureau at the national level and that will again be a household survey. It will be a population-based survey done by telephone and some of the questions within the SLAIT will be recognizable because some of them have the influence of the Your Voice Counts survey. So families I think have the opportunity through taking part in this initiative to have an impact on other initiatives that will be fairly very important in the next few years; really collecting some baseline data on who are our children and what kinds of needs do they have both in health plans and in a broader context of all our systems out there serving our kids.
Faye: Well that's really important information for us. We will be keeping tabs on this and we will have links on our web site both to NCQA and SLAIT so everyone in the audience can get some more information. Now I'd like you to tell us about the major findings of the Family Voices survey related to private versus public health insurance. First of all, what percent of children had each kind of insurance and what differences in similarities were found?
Nora: Okay. Well in our survey, about 47 percent of the respondents had private coverage for their main health plan and about 39 percent of them had Medicaid coverage. And then other people designated some other. About 37 percent of the families said they had a second choice of health coverage similar in many cases similar to what Carolyn was mentioning, which was most often a public program that helped to supplement the private coverage the child might have.
In terms of what were the differences in satisfaction. The families who had Medicaid as their primary health plan were significantly more satisfied across the board in almost all of the questions that we asked.
Originally, we also saw some differences in utilization in the Medicaid versus the private coverage, but as that analysis was conducted further, it looked like that might be more dependent on the health status of the children than on the source of the coverage. But in any kind of data analysis like this, there's always, you know, further refinements that can be done as you go along.
So I guess the most significant finding in terms of private versus public coverage was that those families who had public coverage, Medicaid particularly, seem to be more satisfied with their coverage. And as you looked at the qualitative information the families gave, those were the open-ended kinds of answers they gave to open-ended questions. That seemed to be that there were more benefits provided in the in the Medicaid program and it was easier to get coverage for some of the things. For example that Carolyn has mentioned, such as home health care or other kinds of needs that families might have that they might have had a harder time getting in some of the private systems.
Faye: I see. Now Nora, what advice do you have based upon what you found out from the survey for families who have children in private health insurance, and in managed care plans in particular?
Nora: Well, we asked families to give advice to other families. And I thought their advice was very, very salient. First, they they said that it is extremely important for families to know as much as possible about the health plan that they're choosing. Most of us in our employment based insurance have to make choices of plans, and sometimes we have to change because we change employers or sometimes we change because our employer changes options and we usually have an open enrollment period when we need to make those decisions. So it is very important for families to try to understand as much as they can about what the plans are.
Many families were worried about whether they could get the information to the questions they needed. Families suggested to other families that they try to write down the needs of their child so that they could base their questions on the specific needs that they they could predict as much as possible. Families were quite honest about the fact that they that they couldn't necessarily believe everything that they heard the first time that they asked because many people even within our coverage programs don't necessarily know the specific answers to the more complicated questions that families who have complicated children might need to ask. And then, families often said to other families the most important thing is to understand that they have a very important role to play and that it was really important that they continue to ask our coverage programs to provide what our children needed in the most supportive way possible, but to really be clear that their child really needed to get the coverage that would meet their medical needs.
Faye: Carolyn, what advice would you give to other parents about health insurance based upon your involvement with this survey?
Carolyn: I think it's really important that parents, really in great detail look at what their children need and then ask in great detail and not just ask. For instance, when Mike and I went to a different insurance, and actually my company switched to three different insurances. And so what I did was I went and interviewed each person that was representing the companies as to what they provide and what they didn't provide, what would be acceptable, what wouldn't be acceptable and it was amazing the things that people said their company provided and which they really didn't provide.
So you need to go beyond just talking to the representatives that come out from the companies because they really don't understand what the needs of these kids are. They think that they do, but they don't. I asked, each person I asked:" do you cover you know private duty nursing in the home" and all three of them said:" yes we do." And when I finally finished doing all the research, none of them did. So when I talk to families, I tell them you really need to go beyond the initial intake that you get and to actually talk to them. Find a case manager within the company that deals with kids with disabilities cause more and more insurance companies are offering that and say:" what do you really offer? Do you offer this type of private duty nursing?" Learn the words that go with it, cause the words are really important.
Faye: Well, Carolyn, you've hit upon something really important. Can you tell us more in depth how you found the people that you needed to talk to and how you found the case manager?
Carolyn: Well, early on it was hit or miss. When we first started doing stuff, it was based totally hit or miss and we just, if we happened to get the right person, we got the right information. But over time, as I made phone calls, I would, you know, make the initial phone call to the company and I would start asking for case management staff. And the initial people usually didn't understand what I was talking about and I would say could I speak with your supervisor? Nothing against you, but I need to speak with someone that has more information than you do. And then eventually you found someone who knew what a case manager was. And then they brought you, and then the case manager actually was able to talk to you about the things that they provide and the things that they don't provide.
Faye: Okay, so you felt like being in the survey was a way to help solidify something that you were doing and to validate the approach that you were taking and then get something that can be shared with other people, that these are our experiences. This is what you can do. There are other people out there going through the same thing.
Carolyn: Yes.
Nora: Faye, let me just say, I think one thing Carolyn has mentioned is extremely important, which is that even within the coverage plans themselves, not everybody knows the same thing. And families in this survey said over and over again how important it would be to be able to identify someone within the plan that they could speak to directly about their child's needs, who would have some experience with some other children similar to that, in the plan who might be able to, you know, kind of understand what what this coverage system would offer this plan.
The slightly discouraging piece is that very few families, within the survey at least, actually identified a person as the most important case manager as a person within a health plan. In this survey, most of the families who did say they had case management were getting a kind of coordination or case management from a public agency, and in many cases they were saying that that public agency didn't help them as much to understand their health insurance benefits. They were better at helping them understand some public benefits, but were not quite as good at helping them understand the coverage benefits. So it's an area that I think I would very strongly say to health plans; that I think we need to be certain to help health plans know more about these children, and have health plans know about the kinds of things that would help these children, understand their plan.
Faye: And did the families indicate that they had to go to a public agency for case management assistance because it was not offered by their insurance or was there another reason?
Nora: Well that's a good question. The way we asked our question, we first asked families did they have case management? Did they have a case manager, someone who helped them understand what their child needed and help them get the services they needed. That's how we described the case management piece. And about half of the families said they had that. A little less than half said they had that.
And then we asked them to tell us who was that case manager; who they thought of, because many told us that they had more than one. So we asked them for the case manager you rely on most, does this person help you do a variety of things such as help you coordinate your child's care among different providers, help you understand your child's health insurance plan benefits, help you identify and use community-based programs, help you get on to other public programs and help you find ways to pay for needed services or equipment.
We did ask an open-ended question asking people to tell us more about their case management services. But we didn't specifically ask them why the person they relied on most, why they had selected the person they relied on most. So we don't know who they selected in answer to these questions. Does this case manager you rely on most help you with "X," and in the 50 percent who said they had a case manager, about 11 percent said that that case manager who they relied on most came from the health insurance plan and the bigger percentage came from public plans. But we didn't ask specifically why they chose that person.
Faye: I see.
Nora: We don't know whether they didn't have enough information about the benefits their plan offers. As I said earlier, a number of families said they don't have enough information about the services their plan offers with the benefits within their plans. So I think similar to Carolyn's experience I imagine that there's a lot of families out there who don't know how to reach the case management services within their health plan, if such a program exists.
Faye: I see. Now we are getting ready to end the webcast and I have one more question for you, Nora, about another unique feature of this survey that doesn't happen in a lot of other surveys. Can you tell us about the parent comments section?
Nora: Well, we have very rich information from families about a number of issues. Care coordination, case management is one of them; advice that families feel they need to give to health plans and we have that was an area that families clearly very much appreciated having the opportunity to give us open-ended information, what we call open-ended. In other words, we allowed them to tell us their story.
Many families wrote despite the fact that it was a long questionnaire, wrote many, many comments about how the system works. We're continuing to analyze that information and relate it back to the specific quantitative answers we got and I think it will even offer us richer pictures of how the system is working as we are able to analyze that further. But families had a lot of things to say about the system and how it's working.
Faye: Now as a result of data collected by this survey, what changes could we expect on the horizon from health insurance companies related to children with special health care needs?
Nora: Gosh, Faye, what a great question. I don't know that we can pinpoint exactly what we might expect. But I do hope for one thing which is that what I feel is very strongly needed is we need these children, those who have more significant health needs to be much more clearly understood by our system. And we hope that our families will come to understand the system better so that given this more exposure of information that we can work to really provide some of the changes that are needed in order to give every child in the country quality health care.
Faye: Thanks. Carolyn, what advice would you give to other families of children with special health care needs about getting involved in surveys?
Carolyn: I would tell them to look carefully at the people who are doing the survey. Look at the organizations and make sure that it's an organization that represents the things that you need for your children. There are surveys out there that may not have your child's best interest at heart. But, that to participate in surveys, because the surveys will bring information out that that your legislator, your physicians and your insurance companies need to know.
Faye: I want to thank you both very much for your expertise and your knowledge. You've really shared a great deal of important information with us and I'm really grateful that you were willing to devote the time to doing this.
Thank you for logging on to our webcast production. We're very interested in your comments and questions regarding the webcast and we invite you to contact us. Our e-mail address is cade@uic.edu. Our telephone number is 312-996-2233 and our fax number is 312-413-0367.
We hope that you've enjoyed this broadcast and that you’ll join us for our upcoming broadcasts. They're scheduled for the fourth Wednesday of each month at 1:30 p.m. central time. Please take note that once we have aired webcasts for the first time, they are then archived on the same web site and you can access them at any time, day or night. Our internet address is www.uic.edu/sph/cade/kidsmco. It features our archived webcasts along with extensive lists of resources related to children and youth with special health care needs and managed care. Links to opportunities for on-line training and courses, information about our project staff and activities, the featured web site of the month, and much more.
Thank you very much for joining us.
End of interview.