State Children's Health Insurance (SCHIP)
Originally broadcast: July 25, 2001
Faye: Hello everyone. This is Faye Manister Eldar from the University of Illinois [at Chicago] School of Public Health, Center for the Advancement of Distance Education. I'm the family coordinator for the Quality Community Managed Care project. And I'm happy to be with you today to bring you another one of our webcasts in our continuing series on kids and managed care organizations, focusing on children with special health care needs and managed care. Today's webcast is about Title 21, the State Childrens Health Insurance Program and children with special health care needs.
We're very happy to have with us today two experts from the state of North Carolina. We have Rebecca Greenleaf Bailey who is with North Carolina Children's Special Health Services and North Carolina Health Choice. Jane Rassle is a parent from Ashville, North Carolina. And we're pleased that you could both join us today and share with us information about the wonderful program that you have in North Carolina that assists children with special health care needs.
Now Rebecca, I'd like to start with you please. Could you tell us what is the State Children's Health Insurance Program? Why was it developed and what is its history?
Rebecca: Sure. The state Child Health Insurance Program was developed in response to growing concern nationally over the number of children without health insurance. At that time, in 1997, it was estimated that probably close to 11 million children across the United States did not have health insurance. And it was thought that many of those children were eligible for Medicaid yet not enrolled, and some other children would be eligible for a new program, and they decided to develop the state Child Health Insurance Program. So, Congress included in the Balance Budget Act [BBA] of 1997 40 million dollars funded over a ten year period to fund the Child Health Insurance Program in each state.
Faye: So, is this a state or federal program?
Rebecca: It's a state and federal partnership program. Each state was given the option of how they wanted to set up their program. They could have done a Medicaid expansion. They could have done a separate insurance program or they could have done some combination of both of those options.
Faye: Is there a specific government agency that's in charge of this program?
Rebecca: It is administered at the federal level by the Health Care Finance Administration or HCFA.
Faye: And what about the state level?
Rebecca: At the state level it varies. In North Carolina, it's administered jointly by the Division of Medical Assistance, the Division of Public Health, and the State Employee Health Plan. But each state was given latitude on how they set that up.
Faye: I see now. Could you explain to us please if this program is available in every state and are the benefits the same in every state?
Rebecca: The program is available in every state, but the benefits due vary in every state. As I said, some states chose to do a Medicaid expansion program. By that I mean that they just increased the amount of income the family could have in order to be eligible for the program. So a state that may have been at 100 percent of the federal poverty level may have gone up to 185 percent or 200 percent of the federal poverty level. Other states like North Carolina created an entirely separate program. In our state, the general assembly was concerned about creating an entitlement program, didn't want to go the Medicaid expansion route and instead built a separate program modeled after the state employee health plan. For children enrolled in the North Carolina CHIP program received benefits equal to those available under the state employee health plan.
Faye: Now who is eligible to participate in the state Children's Health Insurance Program?
Rebecca: And again this is something that varies by state. In North Carolina, we ask that children eligible be North Carolina residents. We don't qualify that by asking that they've lived here for one week or one month or one year. We say as long as they have moved here with the intent to stay, they qualify as a resident. They must be under the age of 19. They must be in a family with income at or below 200 percent of the federal poverty level and for a family of four, 200 percent is about $35,000 dollars. So that's higher than most people expect when they think about a publicly funded program. They also have to be uninsured for two months. And that was because when the program was first established several years ago, there was concern about what's called crowd out and that was that families who had health insurance through other sources,through their employer or because they were paying for insurance privately, would drop that insurance and come on to Health Choice, the program in North Carolina.
So in order to insure that children who didn't have any health insurance at all got on to the program first, the enabling legislation included what's called the two month waiting period so that children must be without health insurance for two months before they are eligible for the program. Now the only exception to that two month waiting period is for children with special health care needs. We heard very early on in the program operation that asking children with special health care needs to go without insurance for one day or two weeks or two months was just not something that they could do. And we went back and asked the General Assembly to waive that requirement for children with special health care needs, and they did that in November of 2000.
Faye: That is something that is just only in North Carolina. Is that correct?
Rebecca: Most all states have a waiting period. But the waiver for children with special health care needs, I think, is only specific to North Carolina.
Faye: And how are you defining children with special health care needs?
Rebecca: The enabling legislation defines children with special health care needs and we use the definition that's in the legislation.
Faye: Okay. And who's responsible for telling families about the program and enrolling their children?
Rebecca: In North Carolina, the Division of Public Health or the North Carolina Title VI Program is responsible for two major components. One is the special needs component to all services to children with special health care needs and then the second is the outreach components. So we have a whole work group and committees and staff positions here in the Division of Public Health that work on getting the word out to families. One of the things that we think has been most successful though is what happened at the grass roots level and in North Carolina when the program first started, we asked each county--and there are 100 counties in North Carolina-- we asked each county to develop an outreach coalition. And the coalition is headed by a local health director and the head of the Department of Social Services and then pulls in anyone in that county or in that community who would be reaching the families of children eligible for this program.
And then the local coalitions were asked to come up with their own outreach plan to decide where to put applications, to decide what types of activities to hold. If they wanted to hold health fairs, if they wanted to put up tables at Walmart, if they wanted to send information home with report cards, if they wanted to--whatever they wanted to do--communities were encouraged to think about what would work for their own community and then put that into place. And we think that's been a really big point of our success in enrolling children.
Faye: Now can children with special health care needs participate in the state children's health insurance program?
Rebecca: They certainly can. We encourage and really want as many children with special health care needs to enroll in our program as is possible because we feel like we have such a rich benefits package that really benefits children with special health care needs.
Faye: Are the states required to modify their programs for children with special health care needs?
Rebecca: States are not required to modify their program for children with special health care needs. They cannot discriminate in any way against children with special needs or on the basis of disability. But there are no specific federal requirements beyond reporting requirements.
Faye: Okay so this is strictly a state's option if they have any special provisions.
Rebecca: Exactly. F or children with special health care needs.
Faye: Jane, I'd like you to tell us a little bit about your family, your daughter who has special health care needs, and how you found out about North Carolina Health Choice.
Jane: Well , our family consists of myself, my husband, and a 15 year old son, and our daughter who has just turned 18, who is the one that has the special health care needs. She was 16 when we discovered how ill she was. We found out about NC Health Choice after she was diagnosed with a life-threatening disease. We were completely uninsured, and had been for quite some time and when she was in the hospital someone who was an employee of the hospital suggested that we look into this. I had heard of it, but didn't know anything about it. And the way I had heard about it was because information was sent home with my children from school. The first couple of days of school they always have several things come home with them and that was just glanced at and thrown in the trash because I assumed it was for people on welfare. And so I didn't even look at it. So, I really didn't know anything about it. When my daughter was diagnosed with a life-threatening illness and our whole lives were turned upside down in an instant, I just had no idea, no idea, how we would pay for whatever needed to be done with her.
Faye: What was the reason that your children didn't have health insurance prior to this program?
Jane: Well, I am self-employed and my husband was in a transition period with jobs at that time. He is also essentially self-employed because he is a substitute teacher now and that is what he was just beginning to do as we found out about her illness.
Faye: And so you both are in situations where employment-based insurance is not available to you?
Jane: That is correct.
Faye: And did you try to get insurance any other way, like from an insurance agent or [an] association?
Jane: Well, we had looked into it. In fact a few years ago we did have insurance for a period of time and it was just very expensive and it didn't cover very much at all and it limited us as to where we could, who we could see, and where we could go and it wasn't practical and we had dropped that I guess at least a couple of years before my daughter became ill.
Faye: Okay, and can you tell us a little bit about the process that you went through to enroll the children in North Carolina Health Choice? Did you do it through the mail, over the phone, on the Internet, at the hospital? Did someone come to your house? What was that like?
Jane: Well I think that most of it was done over the telephone. The reason why I'm a little vague there is because at the time we were looking into this, I was four hours away from home with my daughter who was in UNC Hospital in Chapel Hill and I was with her there. So that was not my home base and my husband was at home. And when I asked him to look into into this, he did that through our local department of social services. So he was helped over the phone. I don't really remember, to be honest with you, whether he had to go in there. I don't think he did. I think it was all handled over the phone and then we may have had to mail something. I'm not real sure.
Faye: But you're saying it really wasn't difficult to sign up.
Jane: No, it really wasn't. They were the person that we spoke to was very helpful and was trying to do everything she could to help us.
Faye: Well that's wonderful. Now did you have to wait a long time before you found out whether or not you were accepted?
Jane: We had to wait a few weeks. I don't recall exactly.
Faye: But it wasn't a real real long time.
Jane: No, no.
Faye: Does your family have to pay anything in order to participate in North Carolina Health Choice?
Jane: Initially, we did not have to pay anything at all and all of my daughter's doctor visits and prescriptions were completely cost free to us. Then when we signed up for the second year, apparently our income went up just enough to take us over that line and we did have to then pay 50 dollars per child and we now pay five dollar co-pays for doctor visits, and six dollars for each prescription.
Faye: Now is that 50 dollars a month or 50 dollars a year?
Jane: A year.
Faye: Okay, and is this amount affordable for your family?
Jane: Well, I would have to say yes because we are, we have been able to do this. There has never been a time that because of that we couldn't pay utility bills or whatever. You know we were able to do that, yes.
Faye: And does the program cover most of Andrea's medical needs?
Jane: Yes, it does.
Faye: Does she receive benefits or services from any other government programs?
Jane: No, she does not.
Faye: Okay, well I'm really happy that you found out about this and you were able to enroll her because you know this helps many many families around the country. Now Rebecca, I have a couple questions for you. Are services like physical therapy, occupational therapy, speech therapy, equipment, special formulas, diapers, or home nursing covered by the state childrens health insurance program?
Rebecca: Again, the benefits will vary by state. In North Carolina, most of the benefits that you just listed are covered for children. The way the benefits program is set up in North Carolina is that the package filed after that of the state employee health plan and the enabling legislation allows us to provide additional benefits to children with special health care needs. It allows us to provide up to the same level of benefits as is available under the state Medicaid program. So when we started the program, we looked at everything that was available under the state employee health plan, everything that was available under Medicaid, compared the two and anything that was available under Medicaid, but not the state employee health plan became part of a wrap-around package--what we sometimes refer to as special services--available to children with special health care needs and if there is some type of durable medical equipment, some type of assistive technologies, some types of formulas that fall into that special services package. And then there are some types of like, occupational, physical, and speech therapy that are just in the regular package, but that are used by children with special health care needs.
Faye: I see. Now, is there a relationship on the federal level between the state children's health insurance program and the Title V children with special needs health care program?
Rebecca: At the federal level I believe that states are encouraged to form a relationship between the Title V program and their state childhealth insurance program.
Faye: And what about on the state level like in your state? Is there a relationship?
Rebecca: In North Carolina, the special needs component of the program is housed within the Title V program. I'm not sure how many other states have that same setup where it's actually part of theTitle V program. But it is one that I think really works verywell and I would encourage folks to look at that if possible.
Faye: We will be posting links to this site and information specific you know that North Carolina has developed for their children with special health care needs who are in the state children's health insurance program and I also want to share with everyone that as I was doing the research for this show, I found that there is little information available about children with special health care needs in this Title 21 program.
I want to know also for the children with special health care needs who are in Title 21, do they get services from a case manager orsocial worker or service coordinator?
Rebecca: We do have a case management benefit that is available under Health Choice. We also are allowed by the enabling legislation again to provide service coordination as an additional benefit to children with special health care needs and that benefit is still under development. The enabling legislation allows us to provide two specific benefit: emergency respite care and service coordination. And the emergency respite care benefit went into effect last year and we're anticipating service coordination to go into effect within the coming year.
Faye: Well that's really very progressive. Are there other states that have benefits like that?
Rebecca: I'm not sure how many other states have respite care as part of their CHIP program. There are states that do have I think some unique services for children with special health care needs in their CHIP programs. But it would be something worth exploring for families with children with special health care needs to look into what's available in their state. It's very difficult to kind ofcharacterize nationwide because there's such variety between states.
Faye: I see. Jane, a question for you. Is there anything that Andrea needs in terms of medical care that is not covered by this program?
Jane: Not up to this point there has not been. Everything has been covered.
Faye: Well, that's wonderful and was she able to continue with the samedoctors, hospital, therapists, vendors, pharmacies that you usedbefore she was in the program?
Jane: Yes.
Faye: And were there any problems with that?
Jane: Not at all.
Faye: Are the providers who are covered in a convenient location for you?
Jane: Yes they are for the most part. We initially were seen by a doctor here in Ashville when she was transferred the next day to UNC Chapel Hill. Of course, that was four hours from home so that's not very convenient. However, when we came back home, she is able to see local doctors here and they communicate with the doctors in Chapel Hill.
Faye: Do you receive any assistance with getting transportation formedical appointments in the program?
Jane: No. But we really have not needed that. There may be some people that would require that. We have not.
Faye: Rebecca, is transportation a covered benefit in North Carolina?
Rebecca: It is not covered under Health Choice. It is covered under our Medicaid program, but not Health Choice.
Faye: And Jane, do you receive any services from a social worker or case manager at the present time?
Jane: I have spoken with a case manager a couple of times, but we haven't had frequent contact. There really hasn't been any need to. But I do know the name of the person that I could contact if I needed to.
Faye: Okay, and a couple more questions for Rebecca. What happens if a family of a child with special health care needs applies to be in the state's children's health insurance program because they have no insurance because they are turned down?
Rebecca: That's a good question. Up until now when a family applies there's a joint application for Medicaid and for Health Choice. When an application comes in it's evaluated first for Medicaid. If they're enrolled in Medicaid, that's fine. If they're not eligible for Medicaid, we look and see if they are eligible for Health Choice and if they are, they're enrolled there. And we have not had a way to identify families who were not enrolled in either program, but who had special health care needs. We're in the process now of redesigning our application and we are adding to the application a series of screening questions that will tell us if a child has special health care needs. We're excited about that because it's going to allow us to do some pro-active outreach to families once they're enrolled in the program to make sure that they understand all the benefits available to them and how the program works and that will also allow us to reach out to families who apply but who are not eligible for Medicaid or for Health Choice. So that is not something that was done in the past, but it is something that we will be able to do once the screening applications are printed and distributed.
Faye: And would there be some other type of services available for them if they're not eligible for either program?
Rebecca: There's not another insurance program in North Carolina that that we could enroll them in. But I think there may be other ways to kind of link them with resources either locally or regionally perhaps that might provide some of the things that they are looking for.
Faye: Now another question if you can explain to us please, what is the redetermination process? How often does this take place and what does this mean for children who have special health careneeds?
Rebecca: Families are required to enroll their children one time per year. There is we send out a reminder letter two months before their enrollment is up and we send a series of letters and postcards within that two-month period to encourage families to re-enroll. Families can re-enroll in the same way that they can apply by mail. They can either bring their application to the Department of Social Services or they can simply mail it in and again as Jane said, if they do have, they are required to pay the enrollment fee. They can send that in by mail also. For children with special health care needs, the process is essentially the same. I think the important thing is to make sure that they complete the reapplication process on time to insure that there's no lapse in coverage that occurs. We do have a ten day grace period in which if the application hasn't been received by the end of the last month for which they were covered, we'll allow it to come in within the next ten days and still maintain continuous coverage. But if it comes in after that, it's possible that there could be a lapse in coverage. So, I think that would be the concern there.
Faye: Are the programs in each state required to identify and track children with special health care needs?
Rebecca: There are federal reporting requirements. States report annuallyon utilization of various services. They report on satisfaction with services, on any changes to the plan. The reporting requirements for children with special health care needs are essentially the same as they are for other children.
Faye: And do all states have to identify how many children with specia health care needs they have?
Rebecca: I don't think that that's a federal reporting requirement. I may--we do that anyway in North Carolina, so I may be wrong and it maybe that it is a federal reporting plan and we just happen to be ahead of the game in doing it. I don't think it's a federal quirement. I think it's something that's a state option.
Faye: And do children who are covered by the state health insuranceprogram in any state, do they have rights?
Rebecca: There are, in terms of the appeals process specifically are youthinking of?
Faye: For any type of services or a right to an appeal or any type ofrights.
Rebecca: They definitely have a right to appeal. They can appeal at anytime if a service is denied. We have an appeals process where we go internally and externally through a chain of review. They can certainly do that. They have a right to reapply to the program at any time. If they apply and are found ineligible, they have a right not to be discriminated against because of race, color,national origin, sex, religion, age, disability. They have a right to have all medical information kept confidential. Those are just examples. So they do have kind of a series of rights that we list on the application to the program.
Faye: Now Jane, when you signed your children up for Health Choice, did you get that information about their rights under the program? Did anybody explain that to you?
Jane: I was sent a booklet of information that listed everything that the program covers as far as all the different purposes and I believe in there there was something about rights. I don't really recall, specifically. Actually I have that here. I could look right through it. But anyway, it's the Health Choice handbook is what it is. It really is quite easy to read and understand and it even tells you how to make the most of NC Health Choice. So it does tell you a lot about what is available. And in the cases where something has to be approved in advance, it tells you that very clearly. There are several toll-free phone numbers of different people to call for different reasons. So it's pretty easy to use and understand.
Faye: Have you ever had any problems with Health Choice or any claims that were denied?
Jane: I did have a few claims that were denied initially, but then when we looked into it a little further, found out that they were, in fact, covered. I think that the whole reason they were denied to start with is that the individual offices that we were someone had to pay the bills for just didn't submit the claim correctly. And when that was resubmitted, everything went fine. So, yes everything was really covered. It's just that there were a couple of steps to go through to get it there.
Faye: And is there somebody in the Health Choice program or some other agency who helped you when you had these kind of problems?
Jane: Well I called one of the toll-free numbers in the handbook. And so there is someone I believe in Durham, which is near Raleigh, North Carolina, in the office there who explained who looked into it and explained to me the claim just needed to be resubmitted. I then called this specific office and told them that. So then it was taken care of.
Faye: Oh that's wonderful. Now could you tell us what you like most about North Carolina Health Choice for children?
Jane: Well, I don't know how to express this strongly enough or or just toexplain or make it understood how grateful that NC Health Choice exists and that we were able to be part of it. My husband and I have always worked, paid our way kind of thing, and suddenly our daughter was diagnosed with a life-threatening disease which required many, many tests and surgeries and life supporting medications, oxygen in our home, many, many continued doctors visits and just on and on. And she also is on a waiting list for a heart and lung transplant. That's something where we could get the call at any moment or it could be several months, or even a couple of years away. It's a very difficult situation that we're in and if it hadn't been for Health Choice, I don't know what in the world we would have done financially because there are just so many very expensive bills every month that I don't know how we could possibly have covered this.
Faye: And you know I share with both of you before when we were getting ready for the webcast that when I talk about the Title 21 program with people I said you know, our family is one of the families they designed it for. Fortunately, my daughter now is 19 years old and has multiple disabilities. The program was not available and we lost our insurance three times and had many years of really extreme financial hardship because she couldn't qualify for anything butyou know she needed surgery and she needed therapy and doctor visits and so I'm really thrilled that this program is moving forward and that so many children are enrolling and getting access to health care that was never there before. I know personally what this means to families. And we hope the program will keep growing and expanding in all the states.
What advice would you give to other parents who have children with special needs or maybe they don't have insurance about enrolling in the program in your state, Jane?
Jane: Well, they absolutely need to look into it and find out if they can possibly qualify. Because when you have a child that has special needs, the expenses are just absolutely astronomical. And you have no idea how long these expenses will go on or how they may go up. We don't know the future with my daughter at all with being on this heart and lung transplant waiting list. We have no idea what's going to happen day to day, and the fact that we are able to have oxygen in our home, all of the medications that she needs, the doctors' attention that she needs, and a couple of times when we had to do emergency room visits and everything was taken care of, it is such a blessing. I don't know how in the world we could possibly manage without it. So yes, definitely. Every other family with children with special health care needs must look into this and apply because it is so so important.
Faye: What advice would you give to professionals who are working with families about this program?
Jane: Are you referring to professionals such as doctors or ...
Faye: Doctors, teachers, social workers, therapists, nurses, anyprofessional.
Jane: Well, I don't really know whether all of the health care professional people know about health choice. I assume that they do but I really don't know that they do. They should be educated about it, and when someone comes to them who does not have insurance and just cannot pay for the astronomical bills, they need to advise them to look into Health Choice because while I'm sure that there are some doctors who reduce their cost for certain people and I'm sure that there are hospitals and other programs that will reduce their costs, there's still, even so, the bills would be just out of this world. And to think that someone might be denied life -saving surgery or have that delayed because of not having any insurance coverage is just a heart breaking thought.
Faye: Rebecca, how can families of children with special health care needs find out more about the state children's health insuranceprogram in their own state?
Rebecca: I think the best initial step if they have access to the Internet is to go to the Health Care Finance Administration website. The address for that is http://www.hcfa.gov. And that has a link to each state's plan, how their program is going to be run and it has the name, phone number and address of the state coordinator. So they can contact that coordinator and get additional information about the program in their state. In all likelihood, I would assume that most states have applications available at a minimum at their local health department. So, that would be another place I think that most families could go if that they didn't have Internet access. If they needed some place locally, I would first try the local health department.
Faye: So, we will be posting it in our resource section the list of a list for the HCFAl web site, for the Covering Kids web site and other places where people can get links to their state. As far as Iknow, all of the states have toll-free telephone numbers where families can call up. In some states, people can do their applications over the phone and other states if you call up, they will mail an application to you.
Rebecca: Right.
Faye: In some states you can enroll through the public schools at ahealth fair at your local hospital, at your health department. It varies widely, but I think we can see in the short time that this program has been around that there is a lot of outreach and it seems to be getting easier all the time to sign up for it. Would you say that that's a correct perception?
Rebecca: I would very much agree. States have really, I think that one of the things that's exciting about this program is that there hasn't been a child health initiative of this site since Medicaid in the 60's. And this has really kind of given states an opportunity to try new things, to streamline application processes, to think abouthow to use the Internet and how to use different things that they haven't used before to reach families in their communities and really get the word out in the way that hasn't been done before this program.
Faye: And I think many states have really high rates of having the iruninsured children enrolled in the program in a pretty short periodof time.
Rebecca: Right.
Faye: So well we're encouraged about that and can you tell us who canhelp families with special health care needs advocate to getservices in this program?
Rebecca: I would really say anyone who that they usually that usuallyassists them. Every state Title V program should be an excellentresource in helping families of kids with special needs access theprogram and get services that they need. In North Carolina in particular we have two very strong parent to parent organizations that are very active and understand both Medicaid and our Health hoice program and can help families advocate for services and as Jane mentioned earlier, we have a special needs help line that's an800 number that families can call if they have a question about theprogram if they want to know if they might be eligible, if theywant to know what the benefits are once they're enrolled, if theyhave a claim that's denied, if they want to know a doctor ordentist in their area. It's really a wonderful resource. We will spend as long as it takes to get a family the services that they need and the help line-- I think most states have an 800 number helpline--and that in particular, I know in our state, it's really an excellent resource for families.
Faye: Do other states have a specific toll-free number for families with children with special needs or is that you unique to North Carolina?
Rebecca: ll states should have an 800 number for children with specialhealth care needs. That's part of the Title V mandate that they have that.
Faye: Okay but what about within the state childrens health insuranceprogram?
Rebecca: Specific to the childrens health insurance program, that is not amandate. I think it's up to states to do that. I am not aware ofother states that have one specific to their child health insuranceprogram. It doesn't mean there there isn't another state withthat, but I don't know of any.
Faye: I see. Are there anything like changes being planned on the federal level for this program that may benefit children with special health care needs that you are aware of?
Rebecca: One of the things that the federal level is looking at now is family coverage--ways to insure parents of children enrolled in the child health insurance program. States now can apply for a waiver that will allow them to enroll parents of kids enrolled in their child health insurance program, and I think that has potential as a tool for increasing overall enrollment in that you can make a link that a family that has health insurance is more likely to follow-up, get doctors appointments, less likely to postpone getting prescriptions filled, and overall to have better health. I thinkthat's one of the things that has a lot of potential in the long term.
Faye: Well, we will keep an eye on that and we will post a link to getmore information about family coverages in our future plans.
Now Jane, are there any things that you would like to change about the state childrens health insurance program in your state to help it better meet your child's needs?
Jane: Well, my child's needs I think have been met very well by NC HealthChoice. I can't really think of anything that needs to be changed from my viewpoint. However, I would like to comment on a couple of things that Rebecca was just talking about. The 800 number that is available to us in North Carolina is wonderful because I was just thinking about if there had not been an 800 number, my phone bills would have been astronomical. I don't call there frequently, but there have been several times in the last year and a half that I did need to call and inevitably I'm on hold because it is a busy place. It would have been a really large phone bill frankly that would have been a hardship. So, I'm really grateful for the 800-number.
Another thing I wanted to mention is I didn't know tha tfamily coverage was something that was being considered and that is a wonderful thought because now that NC Health Choice is a part of our lives and my children are both covered, my husband and I still do not have insurance for ourselves. And as anyone knows, that is really, I guess that's considered foolish because it is a very risky thing. You never know when you might get hurt or sick. You never know when that could happen at any time. That could be a financially devastating event. So, the reason that we don't have itis that we are still are not in the position where we can afford it. One of the reasons is because it is so expensive to get private insurance. But another reason is because of my daughter's illness. My income has gone down dramatically. The several weeks that I was with her when she was in the hospital out of town, I was not able to do any of my work at all. So I had no income during that period and then it took for the first few months after she was home, I was not really able to go back to work because at that time she was so dependent on me every day for her health care. Fortunately, that has changed. She has gotten stronger and she is able to do a lot of her own health care at this point and time. But there were probably about six months where I had very little income. So that is still being felt in our lives now a year later.
Faye: Jane, I'm really glad that you brought these issues up because these are critical issues for families of children with special health care needs all over the country and all over the world because we are raising our children at home and we are involved in their daily hands-on care and it limits our ability to participation the work force to have access to being in a full-time job where you would get better benefits or get a higher salary and access there's still very limited access to the various types of childcare and community support for children who have special needs. The burden does fall upon the family, and families are put in a risky position when they don't have insurance. So I am really glad that you brought that up.
Jane: Well, I think that it's very important because I think that when possibly when legislators are looking at these issues, they are seeing some statistics and not thinking of the statistics as real families. And I don't mean that in any way critical of them. I think that I would probably be the same way if I didn't have the personal experience. It's impossible to put yourself in someone's position if you're not there. And Faye, that makes you really important in this position because of your own personal experience. But it's not just the bills that come in which I mentioned before are so astronomical. It's not just the bills. It is then the continued family life and what happens when your child comes home from the hospital. It is devastating. It changes your entire life. Like anything that you took for granted before as far as even being able to run to the grocery store, you cannot do that. When the bills keep right on coming and the electric company doesn't know that your daughter was just in the hospital, they don't know that you're not working the same way you were before and probably don't care. So it is it is just a continuing impact. This will probably impact us for the rest of our lives. I don't know you know I can't see the future, but NC Health Choice has truly, truly saved us. It is the best thing that could have come into our lives once we found out about my daughter's illness.
Faye: Well I am really grateful that you are willing to share your own experience of your family and advice with us and I think this hasa big impact on everybody and Rebecca, what would you say are the three most important things that families of children with special health care needs need to know about the state childrens health insurance plan?
Rebecca: I think the most important thing and Jane's story has borne this out, was that it's not just for people who are on welfare. The income level you know $35,000 for a family of four is not is not that low. We hear a lot from families who may have seen a brochure or got an application, you know, with a report card or saw one in the library who initially didn't apply because they didn't think thatthe program was for them. So I think that is the message I would leave with families above all else is that it is for it's not just for families that are on welfare. It's for many, many different families in different financial situations.
Faye: Any other advice?
Rebecca: If there was anything else, I really would encourage families to particularly in North Carolina because that's the program that I know but there is such a rich package of benefits. I really would encourage them to understand everything they can about the program to make sure they are using and accessing all the services that could potentially benefit their children. Really make the most of this program. I think it's a rare thing to have a program that offers as much as Health Choice does and I want to make sure that families use that.
And then lastly, I go back to our special needs help line because that's a really excellent resource for families. We hear from families from all over the state with all kinds of problems that are on the program or that are off the program and want to get on the program but need more information and we hear back from them all the time about how helpful that was. I would really encourage families in any state to find out the 800 number for their Title V program or for their child health insurance program and call to find out about the program in their state.
Faye: And again we will have information on our resource list where people can go and get information specific to their state. Now in closing Jane, do you have any words of advice for us as weend the webcast?
Jane: Well, I really can't think of anything else other than just to other families of children with special health care needs is definitely look into Health Choice and do what is necessary to enroll in the program if it is at all possible for their family situation because it is a life saver. It truly is. And well I guess I'm just going to be repeating myself. I just think it is the best thing that could possibly have come along for us. I'm so glad that someone advised me to look into it.
Faye: Well I want to thank both of you very much for sharing your knowledge and your expertise with us and Jane, we want to wish you and your family the best of luck and hope that Andrea will be able to receive the treatment that she needs very soon. We really learned a lot today and now we know a lot more about the state children's health insurance program and its impact on families of children with special health care needs.
We will have a lot of resources for everyone on our web site and we will continue communication with you on this really important topic.
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End of interview.