Today’s webcast is about Healthy People 2010 children with special health care needs and health insurance, and we’re very fortunate to have two of the leading experts in the nation with us today to discuss this important topic. Our first speaker will be Dr. Merle McPherson. She is the Director of the Division of Services for Children with Special Health Care Needs in the Maternal and Child Health bureau in HRSA in the federal government. She is a national expert on children with special health care needs and has been in the forefront of this field for many years. I’d like to let all the listeners know that I am very fortunate as the parent of a child with special health care needs to have first met her in 1986 in my first introduction to the Parent Network, that was a Bureau- funded project at the Association for the Care of Children’s Health and I have always been very impressed by her understanding, support, and promotion of family centered care and parent/professional collaboration. And our other speaker is Lynda Honberg. She is also with the Division of Services for Children with Special Health Care Needs in the Maternal and Child Health Bureau, and she is with the project for health insurance and financing, and she is also the parent of a child with special health care needs. Now we would like to start with Dr. McPherson giving us some background on our topic. The first question I have for you is what is the Maternal and Child Health Bureau of HRSA?

Faye: We hear a lot of talk about block grants, what are they and how do they impact children with special health care needs and their families?

Faye: And could you please explain a little bit about the Division of Children with Special Health Care Needs and exactly who is served and what do you do?

Dr. McPherson: That division is us. I am chief of that division and we have two branches in it. We are actually the federal component for children with special health care needs and we provide grants to states, to universities, to family organizations, et cetera. In addition to the dollars we give out, we also do a lot of work in developing the national agenda for these children of providing direction and leadership and new knowledge, et cetera. And we do a great deal of work with our state programs.

Faye: Merle, could you explain to us exactly who are children with special health care needs and how many of these children are there in the United States?

Dr. McPherson: Well, children with special health care needs are a population of the general child population who need services over and above what children generally need. They are about 18 percent of children or somewhere close to 14 million of the children that we would consider to be children with special health care needs. We spent a lot of time, a number of years ago, with families with state partners, with policy centers, with the American Academy of Pediatrics, of sitting down and developing a definition for that population of children which has been published in the pediatric journals, and has been accepted as the definition of the children that we serve. It is a broad and inclusive definition--includes children with or at risk of for special health needs either from the developmental, behavioral, or physical aspects.

Faye: Do all states agree on the definition of children with special health care needs?

Dr. McPherson: I think all the states agree on the definition of children with special health care needs. I think we do have a good agreement that that is the definition of the children, both with the states, but also with the families and with our professional organizations, et cetera. We currently have a national survey that’s being carried out which is the first survey that will give states specific prevalence information, in other words the number of children in your states, and a lot more information about the services and care for those children. To say the states agree on that definition, does not mean that all states have successfully moved their programs to be effectively covering all those children, or developing the system of care and that’s really the work that we’re engaged in now: helping the states move to that broad definition.

Faye: Well, I appreciate your clarifying that and now could you explain to us about the Title V Children with Special Health Care Needs Program? what is that program and what percent of children in states qualify for the program, because you mentioned there are about 14 million children nationally with special health care needs?

Dr. McPherson: The Title V Children with Special Health Care Needs Program is a program in every state that is actually supported by the block grant that we spoke about, and as I say 30 percent of the state dollars needs to go to that program. Those programs actually through legislation have three functions; one is to provide or pay for services of children who don’t get it otherwise, so that in most states the Title V Program actually has a service program for groups of children that have been identified by the state as needing services. They also have a responsibility to work with the SSI Program to ensure that the SSI children are moved into care and services. But they also have a new mandate that was done in 1989, we rewrote that legislation in which Title V was given the responsibility to support the development of a community- based system of services for children with special health care needs and their families.

Faye: To let everyone in our audience know, we have links to all of the agencies and programs that have been mentioned, you’ll be able to find all of the national information as well as the state by state information in the resource section that accompanies this webcast and of course we will have a link directly to the Maternal Child Health Bureau and you can get extensive information about all of their divisions and programs for children with special care needs and what’s new. And now another question for you: who is the Surgeon General? what does he have to do with children with special health care needs?

Faye: You know I asked this question because our webcast concerns also Healthy People 2010, and I’d like you to please fill us in about what is Healthy People 2010 and why it is important for children with special health care needs.

Dr. McPherson: Okay, and one of the things that I did notice that the Surgeon General’s office is responsible for what we call as Healthy People Goals. Every 10 years, the United States writes down what the health goals for the Nation are for the next 10 years, and those are very, very broad ranging from things like reducing tobacco use, to all of the kinds of dental health, et cetera. We in 2010, which was written in 2000, have a statement that by the year 2010, we would develop systems of services for children with special health care needs and their families in all states, and so it is a very important place that says that we really do intend to get the services and support in place for children in this country.

Faye: What are some ways that families of the children with special health care needs can get involved in the Healthy People 2010 initiative?

Dr. McPherson: Yes, and we should make it clear that our 10-year action plan has six steps to it for states to carry out. The first being that families need to participate in being involved in all of the things we do so that we have family- centered care and family- professional collaboration. Number two is the issue of ensuring that all the children have access to health care, to what we call a medical home. But that means you have somebody to call at two o’clock at night when your child is having a health problem. It’s having a good, trusted, medical care source, that insurance is adequate, whether that’s coming from Medicaid or SCHIP or private insurance, to ensure that all families have insurance and that it is adequate to cover some of the broader needs that you have. We also have an action step that talks about early and continuous screening and assessment and identification so that we are helping identify those children early and move them into the care and treatment they need. We also have a step that talks about working at the community level so that the services are organized, so that families can access them easily. And the sixth and last step, which is where I am getting to, is that the final issue which is that it’s called our Healthy and Ready to Work step and it is that youth and young adults will get the services they need early in life, but also through transition so that they can move to independence, to employment, and to good adult health care. So those are the six steps. Youth are very much involved with us and we will have youth speakers at the summit.

Faye: Well, that’s wonderful. I hope that there is a really good turnout and of course we have lots of information to share about it. Does Maternal Child Health Bureau have other events, resources, and information specifically for the families of children with special health care needs?

Faye: And just so everyone knows Family Voices is a national grassroots organization run by families and supported by the Maternal Child Health Bureau, and the mission is sharing information with families about children with special health care needs. One of my other hats has been almost 10 years of volunteering to be a state coordinator for Family Voices in Illinois. It’s a wonderful source of information and connections about any topic for any kind of special needs for any agent in the state, so I really appreciate you’re bringing that up. In Family Voices we’re all extremely grateful for all of the support and guidance from the Bureau in really showing how families and professionals can work together at all levels. Now, just another question for you Merle, if you could talk to us a little bit about the Americans with Disabilities Act and Section 504 of the Rehabilitation Act and what is their connection with the Healthy People 2010 goals and activities?

Dr. McPherson: Well, I think the Americans with Disabilities Act is a piece of legislation that kind of frames the context for all that we do. It’s a marvelous piece of legislation and we do try to make sure that everything we do is linked and responsive to ADA. We also work not just with 504, but with Idea and Part C so that we are very, very linked with the Department of Education in terms of ensuring whether those children qualify under Idea or whether they qualify under 504, which guarantees the protection and services in the schools even if they don’t need special ed. Our part of this 10-year plan that we’re involved with--we’re talking about a very broad population of children with special health care needs--youth and families, who we’re interested in making sure get the health and medical services and insurance they need. They’re very much a part of what we do. Maybe I should mention also, Faye that this administration early on, announced a Freedom Initiative that was directed towards persons with disabilities and was really a follow up to ADA. One of the things that initiative is doing at this point in time is trying to pursue a government response to the Olmsted legal case, and if we need to either you or I can tell--

Faye: --perhaps you could explain to us what that is just briefly?

Faye: Well, I’m really glad that you shared this information with us, it is very important and also very complicated and we’ll have links for all of these topics and all of these government programs and organizations in our resource section as well so we can get more in-depth information. Now I’d like to shift a little bit and ask some specific questions on the adequate health insurance goal, Lynda, your expertise is in the area of health insurance so I am going to start with asking you. Tell us about the Healthy People 2010 initiative. It has a goal related to adequate health insurance for children with special health care needs. why is this an issue?

Faye: Well, Lynda, now I’m going to ask you for some statistics to sort of get a snapshot of what’s going on with children with special health care needs and insurance. I know people often assume that all children with special needs are covered by Medicaid or government programs, so perhaps you can tell us about the percent of children with special health care needs who have insurance, the percent who are on Medicaid, and what percent have adequate insurance?

Lynda: I’m going to provide you with data from the 1994/1995 National Health Interview Survey. We are in the field and as Dr. McPherson mentioned earlier, we are doing a national children with special health care needs survey which will provide us with more up-to-date information, but based on the National Health Interview Survey, the majority of children with special health care needs actually have private coverage. About 55 percent versus 29 percent who have Medicaid or some other kind of public coverage and 11 percent are uninsured, and then about five percent have some combination of private and/or public. Now those numbers don’t include a new program which was implemented several years ago, that children’s health insurance program or the SCHIP program, so obviously, when we get data from this new survey, we will be able to update it.

Faye: Lynda, who decides if a child with special health care needs is eligible for a type of government health insurance program? is it the federal government or the state government who decides this?

Lynda: I assume that you’re talking specifically about Medicaid, so let me address Medicaid. Medicaid is actually administered by the state, within federal guidelines and the federal rules mandate that certain populations and actually certain benefits must be covered and beyond that the states can decide on optional populations and benefits. There are a number of mandatory populations but the big ones include pregnant women and children who are under the age of six, up to 133 percent of the federal poverty line, older children up to 100 percent of the federal poverty line, and then elderly and disabled individuals who are eligible for Supplemental Security Income. So beyond these mandatory groups, states can choose to cover other groups. For example, many states will decide to cover individuals with disabilities who exceed the SSI income limits. States have considerable flexibility to set these income and asset criteria for these optional groups.

Faye: So you’re saying it is not the same in every state?

Lynda: That’s right. And that’s where the confusion comes is that you can be eligible in one state and not eligible in another state.

Faye: Dr. McPherson, I don’t know if you want to talk about the differences in eligibility for the Title V Program?

Dr. McPherson: I think only to acknowledge that in terms of the services that Title V offers, that is also state discretion. So that varies from state to state. Their broader mandate to develop community systems of services which is their newest mandate and the one we’re working with them on, is inclusive of all kids and similar between states, but it is the state who decides what financial eligibility is in terms of services they will pay for.

Faye: Now this leads to my next question. is there a national program like Medicare for children with special health care needs?

Faye: Well, thanks for explaining that. Now you mentioned the new state Children’s Health Insurance Program. You’re currently tracking the difference it’s making in proving insurance to children with special health care needs?

Lynda: Yes, we don’t have accurate numbers in terms of the percent or the number of children with special health care needs who are enrolled through their state SCHIP program, and those numbers vary by state and kids obviously are eligible at one point in time, and then become ineligible because of changes in the income status of their families. What we do know is that for many children with special health care needs, the SCHIP programs have not necessarily provided the benefits and services for this population and has not been the panacea that some people predicted. That’s primarily in states that have decided to administer their SCHIP program using a private option rather than using their Medicaid Program. So kids enrolled in a SCHIP Program that have a private option have some of the same difficulties accessing services as kids in the private market.

Faye: Okay, and so then you are saying that children, who are covered by Medicaid, do they receive quality appropriate care for their special needs?

Lynda: You know Medicaid actually provides on paper a very comprehensive package and it does have the EPSDT benefit, which again it’s on paper and if it is administered correctly, it does provide access to a comprehensive set of benefits.

Faye: What is the EPSDT benefit, Lynda?

Lynda: Early and Periodic Screening, Diagnosis Treatment. But what happens with the administration at the state level is states don’t necessarily follow the benefits that are in federal regulations. Many states now contract with managed care plans for delivery of services to the population. Families have reported access problems for a variety of reasons, first due to what’s called service authorization policies, where plans define medical necessity in very narrow terms, typically using adult standards and that are used as a reason to deny critical services--services like speech therapy, services like durable medical equipment. Also, a lot of health plans do not include experienced providers in their network, so again on paper, children are suppose to have access to specialists, but those specialists aren’t necessarily in the networks. Federal law does provide for a number of protections to assure quality care. One of the agencies responsible for that, what was once called the Health Care Financing Administration, and now called the Center for Medicare and Medicaid Services does approve all state requests for the administration of their Medicaid Program and they do monitor how states are administering their Medicaid Program.

Faye: Again, what help is there for children with special health care needs who don’t qualify for Medicaid or the state Children’s Health Insurance Program or for Title V?

Lynda: Well, I’m assuming, Faye, that you are talking about those kids that have private coverage. Is that the group you’re referring to?

Faye: whether they do or do not have private insurance, they don’t meet the eligibility, for these government programs that we have been talking about, is there other help available for them?

Faye: What exactly is the Family Opportunity Act?

Lynda: The Family Opportunity Act would provide families the ability to what we call, "buy in" to Medicaid. So it would change the income status and allow families to purchase Medicaid even though they currently right now are not eligible for Medicaid.

Faye: That sounds like that would be extremely beneficial to a lot of families then. It’s important legislation; we encourage people to find out more about it, we will have a link in the resource section.

Dr. McPherson: Faye.

Faye: Yes?

Dr. McPherson: Let me mention on the FOA that there is also the Family-to-Family Information Centers that really would develop family organizations, in settings across the states to provide information to families. There’s part of that bill as well as the "buy in" and I just wanted to stress that that is a piece of legislation that would expand what we’re doing in terms of family centers, care and family professional collaboration.

Faye: Yes, I’m really glad that you mentioned that and it’s important for people to know this, that dealing with the health care system and the disability system is really complicated and through the support of Maternal Child Health Bureau, it’s strong parent movement of, you know, parents sharing information and resources and, teaching and training other parents to develop skills. It’s still done on a mostly volunteer basis and is not yet available to everybody, but much progress has been made. So I’m real glad that you mentioned that and we hope people will find out more about Family Opportunity Act and ways that they can get involved with that. And now could you tell us about the federal project and programs that exist right now, to help children with special health care needs, access insurance and appropriate health care and tell us about the grants that you currently have that are related to insurance on this specific topic.

Faye: Okay. And I understand also that you’re getting ready with some new initiatives with new grants. Could you fill us in a little bit about that please?

Faye: I’m really happy to hear about that. There’s a real big need for that. And will that be in all states, or in just a few states?

Lynda: Well, it’s competition, Faye. So we will be getting applications from organizations and we have a review system set up and the grants will be announced next year. The applications are due in early February.

Faye: Okay, so these are some of the ways that you’re currently involved in improving health care and improving the insurance for children with special health care needs?

Lynda: Yes, and we’re trying to work with a lot of different partners, because that’s what it’s going to take. With families, with organizations like family voices, with providers, through the academy of pediatrics, with employers, with health plans, through organizations like the American Association of Health Plans, with our federal partners like Medicaid and the staff at CMS. So it’s really about building partnerships to focus on this issue.

Faye: What is the best way for people to get information about this, Lynda?

Lynda: Well, they can go to our web site or they can contact me and, you know, I’m happy to provide through the resources that you’ll be posting, either my email or my phone number.

Faye: Well, that will be wonderful. You know I have another question for Dr. McPherson now. About the healthy people 2010 goals, do they also talk about regular health care that children with special needs require--things like dental care, immunizations and physicals, you know, and check-ups?

Dr. McPherson: Yes. I think it talks about access to a regular source of ongoing care described by us as the medical Home. And part of the reason for the work that we’ve done with community pediatrics and developing this concept of a medical Home, has really been to make general pediatric practices inclusive of children with special health care needs and their families, and ensure that they get all the same kinds of services that other children do. And in fact, one of the projects we’re working on, there is something called Bright Futures for children in families, which are standards and guidelines for pediatric health care that the Bureau has developed nationally with all its partners. We are currently working on a supplement to that which really talks about Bright Futures for children with special health care needs and we’re using the format of what all kids get and trying to give some special directions and information. So I think that’s an exciting piece of work because it really does reinforce the issue that this agenda is about community inclusion in all aspects for children used in families, whether it be in the schools, whether it be in the daycare centers, whether it be in the health facilities, and that with our Medical Home work with community pediatricians, we’re really stressing that issue of getting the immunizations, doing the counseling on good health habits and all the things that your other children get.

Faye: Great. Thanks for explaining and we again will have links to Bright Futures and to the Medical Home project so everybody can get some more information on these important topics. Well, we’re getting ready to wrap up now, so I have some closing questions for each of you, and I’d like to know what advice you have of families of children with special health care needs who either do not have insurance for their child or do not have adequate insurance for their child. Now, I’ll let you pick who wants to go first.

Dr. McPherson: I’ll hand that to Lynda, since she’s our insurance expert.

Lynda: Well, I think I’ve mentioned before that I think it’s always important to first find out if you really don’t qualify. unfortunately people often assume that they don’t qualify for a program, or that again, sometimes there are programs out there, that people aren’t aware of. I always think the best resource is talking to other families and I always advise people to contact family voices in their state. I would document the services that you need. I would talk to your benefit manager if you’re getting insurance through work. Oftentimes benefit managers who administer the insurance program are not aware that some of their employees need services that are not covered by their current insurance program. I would talk to your primary care provider; they can really be an advocate for you to the health plan. You can contact the medical director of your plan. Again, many times health plans are not aware that there are members who need services or are not able to access services and sometimes it’s a matter of a simple phone call and contacting either the medical director or member services of your plan.

Dr. McPherson: And I guess the part that I would add, Faye, because Lynda’s done a nice job of talking on an individual basis of how you struggle to try to get those questions answered, I would invite all of the families to come and work with us on achieving the 10-year plan, so that in the next number of years we do have good adequate insurance for all children and families.

Faye: Okay. Well, that’s very good advice. We will get the word out to everybody. and do you have any closing comments or things that you want to stress again to our audience on our topic today?

Dr. McPherson: Well, the thing that I would like to do is stress the December summit, and our interest in having wide range of family participation and I know some of you work in organizations or have grants that may support the travel. There are a number of scholarships available through the meeting and I think some of the--there’s other sources of money through some of the family organizations. So I hope you know about the summit and I hope you’re interested in coming and we would like to see you there.

Faye: And it’s not too late for people to sign up, is that what you’re saying?

Dr. McPherson: It is most certainly not too late to sign up, but we would like you to do it soon so that we can know who’s coming and get a good meeting put together.

Faye: Well, we will be very happy to help you get the word out.

Dr. McPherson: Thank you.

Faye: And we will continue to work together. It’s been a pleasure doing this webcast with you, talking about Healthy People 2010, children with special health care needs, and health insurance. I’m very grateful that you made the time to share your expertise with us, and I want to thank you. Thanks for logging on to our webcast production. We’re really interested in your comments and questions about the webcast, and we invite you to contact us. Our email address is cade@uic.edu. Our Internet address is http://www.uic.edu/sph/cade/kidsmco. Our telephone number is 312-996-2233, and our fax number is 312-413-0367. We are located in Chicago, Illinois, and we’re on central time. We hope that you’ve enjoyed this broadcast, and that you will join us for 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 they archived on our web site and you can access them at any time day or night. Thank you for joining us.