Extended Interview: Nancy Swigonski
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NANCY SWIGONSKI: I’m Nancy Swigonski, and I’m a physician, a pediatrician who works at the North Arlington Health Center and also at Indiana University.
SUSAN DENTZER: And in addition to that, you now are the principal investigator on this grant.
NANCY SWIGONSKI: Right. I now have an award from the David and Lucille Packard Foundation and Agency for Health Care Research and Quality to evaluate the impact of CHIP, or the Children’s Health Insurance Program, on children with special health care needs in Indiana.
SUSAN DENTZER: Great. Let’s talk for just a moment about the backdrop of CHIP. The program, of course, was instituted by Congress in 1997. There was a commission that was appointed to look into how CHIP should be expanded here, and ultimately the decision was made to proceed in two phases, and to date enormous success has been scored; agreed?
NANCY SWIGONSKI: Yeah. I think Indiana has some unique qualities in things that have happened that have allowed for that success. One is, as you mentioned, there was a commission for the working poor that put forth many ideas on how health care expansion could happen for children and families in Indiana, and it was recognized as a problem. The second thing was that there was, in fact, a legislative mandate at the time that CHIP was funded through Indiana to develop a child health policy board. The child health policy board includes many of the heads of the agencies within the state, and its goal really is to coordinate and collaborate with services that provide health care for children, and I think that it has been an enormous potential and boost for children and children’s services in Indiana.
SUSAN DENTZER: so it’s not just that a program was enacted or eligibility requirements were changed. You’re saying structurally there was an effort to really integrate the services better than ever before.
NANCY SWIGONSKI: Exactly, and people who had been in positions before seemed to be opening their eyes and looking at the whole system with a broader perspective. I think that the Child Health Insurance Program, the CHIP program actually was the impetus for change within the Medicaid program to move from what was called welfare when, in fact, health care was tied to receipt of services for children, ADC, and now it’s – The link is severed. Now children, they’re moving essentially from welfare to health care in the Medicaid program and the Hoosier Healthwise program is really focusing as a health insurance program, not as a welfare type program.
SUSAN DENTZER: Or income supported program.
NANCY SWIGONSKI: Right.
SUSAN DENTZER: To date now 300,000 children, roughly speaking, are enrolled in the combined phases of the program. The take-up rate, the jargon is extraordinary by the standards of most states. The outreach efforts have obviously been very successful. What do you think that’s been due to?
NANCY SWIGONSKI: Doing a lot of coordination and collaboration at the state level. The Medicaid program and the first steps early intervention program, and the Title V program have what’s called a combined enrollment form, so that when you enroll in one program, you in fact can be referred and enrolled in all three. That’s not used throughout the state, but in many places it is. The other thing is that they’ve really simplified their application program so that there is now a one page front and back enrollment form. In addition, there’s multiple more enrollment sites. There have been – I forget how many, but there’s now more than 500 and people are reaching out to health care centers, schools, head start centers, a multitude of places wherever they can reach children and families.
SUSAN DENTZER: so no longer are people being required to travel to the welfare office and fill out a 30 page application.
NANCY SWIGONSKI: Exactly. The other thing they can do is actually call in by phone, talk to a benefit advocate, and have applications mailed to them that they signed so in fact, they never have to go to any office.
SUSAN DENTZER: Now, your job with this grant is to evaluate other aspects, other programs as you said, specifically with respect to kids with special needs. What are you going to be looking at?
NANCY SWIGONSKI: We’re looking at several outcomes. One, of course, will be what is the impact of insurance, and so we’ll be doing a baseline survey and a survey one year later to look at changes in health status, changes in access to care and utilization of care. In addition, we’re going to be looking at the quality of care that’s being given under both Medicaid expansion and the state program. We’re going to be looking at utilization over the year of time that we’re looking at the grant. We’re going to look at satisfaction of families with the care that they’re receiving, and will be looking at quality of care, and quality indicators.
SUSAN DENTZER: Now, since all this is just getting started, I presume it’s too early to say much, but do you have any idea going in as to what the situation is in all those areas?
NANCY SWIGONSKI: Because the coordination collaboration has been working so well at the state level. I think what we’re going to find is that children are well served under both programs. They were originally, especially from the advocacy community, some concerns about having a state plan that does have some limited benefits, and I think that we’ll see how those fare out in the long run.
SUSAN DENTZER: And this is because in the second phase there is a lesser benefit package than in the Medicaid expansion.
NANCY SWIGONSKI: Exactly.
SUSAN DENTZER: Talk specifically – what are the differences?
NANCY SWIGONSKI: Well, the Medicaid expansion under EPSDT has really a full range of comprehensive benefits, and covers almost anything you could imagine for a child. The state health plan covers acute preventive and primary care. So it is, in fact, quite comprehensive when you compare it to other private health insurance plans. But it also has some limitations in it, just like private health insurance plans do. So, for example, there are differences between benefits for things like physical therapy. In a private health insurance plan, you may receive eight physical therapy sessions if you injure your arm in a car accident. But for children, especially Children with special health care needs, who for instance, have cerebral palsy, they may in fact need weekly physical therapy sessions for habilitation, not rehabilitation. And those kind of benefits are not necessarily going to be covered under the state health plan.
SUSAN DENTZER: In addition to which there are also co-payments and other things that are not part of the Medicaid.
NANCY SWIGONSKI: Exactly. There are a few co-payments for pharmacy, emergency room care, and ambulance. For primary care, preventive care, there will not be co-payments.
SUSAN DENTZER: So again, it’s early in the process, but what do you think you’re going to find? Do you think you’re going to find differences, or is it really too early to tell?
NANCY SWIGONSKI: I think we certainly find that health insurance for children is worthwhile. I think that these children will all benefit from having primary care providers, preventive care, and health insurance to cover any acute emergencies. I also think that we’ll find that broader benefits for children are worthwhile. We know that children benefit remarkably from preventive care. We know that many things that – many of the morbidities a child had are, in fact, preventable and that by giving immunizations, by screening for labs, by performing some of these other things, we can insure that the long-term health of the children.
SUSAN DENTZER: you’re also on the child health policy board? No? You attend the meetings?
NANCY SWIGONSKI: I attend the meetings.
SUSAN DENTZER: So you have a liaison to what the report is doing. The Board has been described to us variously as meaning different things to different people. One school of thought is that it is possibly evaluating whether to expand CHIP further to include the parents of enrolled children along the lines of what has been proposed in Washington. Do you think that that is, in fact, what the board is aiming at? Or if not, what is the board’s purpose at this point?
NANCY SWIGONSKI: I think that’s one of the purposes. Certainly the legislation says it’s too – follow the implementation and coordination and collaboration. But in Indiana, we do have relatively low uninsurance rates, and so the health plans here have been very instrumental in working on the governor’s chip panel and working with state legislators to see if there’s other ways, innovative ways that we can provide health insurance for families. And I do see them as making that as a next step.
SUSAN DENTZER: And what kinds of solutions do you think they will explore other than potentially expanding Hoosier Healthwise further?
NANCY SWIGONSKI: I think there may be a possibility of subsidizing private insurance premiums like they have done in New York. Expansion is a possibility, although Indiana is fairly fiscally conservative and so I don’t see that as likely. But I think any methods that they can think of to make health insurance affordable for families they’ll probably entertain.
SUSAN DENTZER: Back to the operational aspect of the Medicaid expansion and shift, those arrangements are managed two different ways at this point. Managed care type arrangement as well as a primary care managed base arrangement. You’re going to be evaluating those differences as well; correct?
NANCY SWIGONSKI: yes. So all CHIP enrollees, all Hoosier Healthwise enrollees will be in either risk based managed care or in the primary care case management. In the risk based managed care physicians or physician groups are capitated by the health plans to provide services for children, and the risk possibly for children with special health care needs is that if you provide less services, in fact you’re being compensated more. The huge benefit of being in a risk based managed care is that they do really focus on preventive care, and they have a network of both primary care and specialty care providers, and so children with special health care needs may benefit remarkably from a system like that. So it’s really a two-edged sword. It will be interesting to see how it works out within Indiana. In the primary care case management, physicians are given a small monthly fee basically for being the primary care provider, and are still paid on a fee for service basis. And so they serve essentially as a gate keeper to get into specialty care or into the emergency room. But those – the difference in Indiana is that primary care case management tends to be more in the rural areas where you don’t have a network of providers to provide for children.
SUSAN DENTZER: And that is specifically why the two arrangements were struck, correct, because you didn’t have managed care presence in some of those rural areas.
NANCY SWIGONSKI: I would guess so, yes.
SUSAN DENTZER: Do you have any inkling going into this whether you will see differences along the lines you’ve described as potential differences?
NANCY SWIGONSKI: I think it’s going to be difficult to tease out what is a rural urban difference from a system difference, and that’s going to be one of the things that we’re going to have to look at carefully and see if we can deal with statistically.
SUSAN DENTZER: One obstacle that has been cited to children’s access, even in light of the existence of Hoosier Healthwise is provider payment rates. How big an obstacle is that?
NANCY SWIGONSKI: I think throughout the state it’s a big obstacle. I know, for example, with the dentist that they had a large – they really had very little capacity in dentistry, and they increased the rates remarkably, in fact, almost tripled the rates, and the dentists have really come on board and are beginning to sign up with Hoosier Healthwise patients. The local chapter of the American Academy of Pediatrics has cited the low payment rates as a real concern, and many physicians in private practice say that they are not able to cover their overhead costs with payment from Hoosier Healthwise.
SUSAN DENTZER: For example, what is a standard pediatric office visit reimbursed at now under – is it the same reimbursement for both the Medicaid portion as well as the CHIP portion?
NANCY SWIGONSKI: It is the same, and I don’t know the answer to that.
SUSAN DENTZER: What’s your guess?
NANCY SWIGONSKI: I think it’s 35.
SUSAN DENTZER: Which for many pediatricians would not come close to covering -
NANCY SWIGONSKI: Especially not with immunizations, so unless they’re with the vaccine for children program, and are already getting vaccinations for free, you really can’t cover child care costs with that.
SUSAN DENTZER: Is there any pressure to increase those payment rates?
NANCY SWIGONSKI: Yes, the American Academy – local chapter of the American Academy of Pediatrics has really lobbied hard.
SUSAN DENTZER: So there is some prospect that perhaps that might be dealt with?
NANCY SWIGONSKI: Perhaps. I think there was a great disappointment. Originally the second phase of CHIP or the state program was suppose to have better payment rates than the Medicaid expansion. The concern at the state level was that they did not want a two-tired system where one seemed to be getting better care or was better received than the other system.
SUSAN DENTZER: You treat children who walk in the door, you may sometimes know whether they have insurance, you may not. You don’t need to know necessarily. But when you do become aware that a child is uninsured, do you detect the kinds of health care differences that study after study has shows exist among children with different health insurance status; that is to say, some children who lack insurance are arriving later to see the doctor than is desirable, or arriving in the emergency room as opposed to in a primary care clinic, having much worse outcomes with respect to diseases like pneumonia, outcomes of ear infections and so forth.
SUSAN DENTZER: Have you seen all of that? Have you witnessed all of that as a provider?
NANCY SWIGONSKI: I think there is no doubt that when families are having to pay for services, they wait longer so that their child has fever for a longer amount of time. In fact, many times the children have pain for several days with ear infections. So those are the kinds of things that I wee mostly in a primary care setting like this clinic.
SUSAN DENTZER: So you literally see kids who have had ear infections for several days, are in an excruciating amount of pain, finally come to see you out of desperation as much as anything else.
NANCY SWIGONSKI: Exactly.
SUSAN DENTZER: what do you do when you become aware that a family doesn’t have insurance at this point? Do you talk to them about Hoosier Health wise?
NANCY SWIGONSKI: Actually, at this point I’ve learned a lot in the last couple of years to be with several programs, and through the American Academy of Pediatrics medical home project, and one of the things that they really emphasize is that people have financial access to care, and what I’ve found is families want to talk about health insurance. And they want their physicians to talk about health insurance. And I do feel a little awkward because I’m not asking them about health insurance because I want to be paid, and the way that I really approach that usually is when I have a child that comes in that, that I am seeing late, or I know I’ve prescribed what are expensive medications. Many of the antibiotics and asthma medications are very expensive. Then I’ll ask a family, do you have health insurance to pay for your medications, and that way it doesn’t look like I’m trying to get money, but really interested, in fact, as I am in helping the families, and then explain to them that there are multiple resources now for children and especially children with special health care needs to have financial resources to pay for their health care.
SUSAN DENTZER: And in fact, you had one incident not long ago involving a mother. You were describing it earlier. Tell me what happened.
NANCY SWIGONSKI: I did. The first patient in the morning was a mother whose child had had asthma, and in fact, she was a young lady who presented rather late. She had had asthma symptoms for three days, had been really short of breath, and the mother did not have health insurance, and was worried about bringing her to the doctor. And I saw the child prescribed medications and said – asked her, do you have insurance to help you pay for this medication? And the mother actually started crying. Her husband had died a year ago. She had gotten a part-time job that she was really enjoying, but she had just thought that morning that she was going to have to quit working so that she could qualify for Medicaid so that she could pay for her child’s medications. And I referred her to our Title V, or children’s program, and she enrolled in that health insurance package, and it covers all of her asthma care and primary care.
SUSAN DENTZER: What did she say to you?
NANCY SWIGONSKI: She gave me a big hug while she was crying and said that God had sent her to me that morning. It was overwhelming.
SUSAN DENTZER: Is this a common place, particularly in the clinic? Do you see lots of people in that situation?
NANCY SWIGONSKI: We see a fair number of people in that situation. As you know, this clinic really targets low income or uninsured families, and what’s really neat is with the children’s health insurance program, we’re really able to help them not so that they get sporadic care, but so that they can get ongoing continuing care.
SUSAN DENTZER: One of the things we heard when we going around with an outreach worker was that many people are still confused about whether they’re eligible for Hoosier Healthwise, whether their kid are eligible if the parents themselves are working. But there still is this lingering sense that these programs are for people who don’t work, that there is a welfare stigma still attached to them. Do you find that that lingering old feelings about Medicaid is still alive, and that people still are confused about their eligibility status?
NANCY SWIGONSKI: Yes, I think that it’s both on the provider, the physician’s side as well as on the member’s side, or the person who enrolls, that for a long time, as you know, Medicaid was linked with welfare, and no longer is. And again, in Indiana they’re really trying to move from welfare to health care, and provide health insurance. They’ve done many things to try to get past that at the state level. One is they have brand new Hoosier Healthwise cards that used to say welfare recipient, or – I can’t remember the exact wording on the old card. But now it says Hoosier Healthwise health insurance. And to reiterate that this is a health insurance program both for working and non-working families.
SUSAN DENTZER: So why are doctors still confused about this?
NANCY SWIGONSKI: I think that the old stigma has just lingered, and that people are not necessarily up to date with the way that the program has changed, although there’s been a fair amount of education efforts. The stigma, I think, also remains in terms of working with some families that are not good at keeping appointments, that don’t call when they’re going to be late, that kind of thing.
SUSAN DENTZER: This state has had somewhat of a problem, as have many states, of dealing with the delinking of Medicaid and welfare such that when families move off temporary assistance to needy families, and are supposed to move into Medicaid because of specific steps to keep that linkage alive, don’t fall off Medicaid. Don’t realize that they’re eligible for these other programs and essentially wind up uninsured. In your experience, has that been a major problem?
NANCY SWIGONSKI: Yes. I think that has, as you mentioned, in all states with the de-linking there really has been a separation in families who go in and apply for TANIF and not then get referred for Medicaid even though they might be eligible. I think that that’s an implementation sort of process that will get better as time goes by and people recognize the difference between the temporary assistants for needy families and the health insurance program.
SUSAN DENTZER: So do you see mothers coming into your office with kids who are in this situation; that is to say, the mothers are in the situation of either being in temporary systems, or transitioning out of it and somehow winding up uninsured at the same time?
NANCY SWIGONSKI: We do. We’re pretty cognizant of that, though, and we’re usually able, especially with our younger mothers, our adolescent mothers, to recognize that that was a situation that happened, and encourage them to go back and in fact apply for Hoosier Healthwise.
SUSAN DENTZER: So slowly but surely that problem can be chipped away at.
NANCY SWIGONSKI: I think it will be.
SUSAN DENTZER: Particularly if you’re in a setting such as this one where -
NANCY SWIGONSKI: Exactly.
SUSAN DENTZER: You understand the private structure. What do you think is the likelihood – well, let me ask a different question first. The remaining pool of uninsured, once every child in Indiana was eligible for Hoosier Healthwise has reached out to is going to be single or childless adults, primarily working low income adults, what do you think the prospects are? We talked a bit about this in the context of the child health policy board. What do you think the prospects are for moving beyond what in a political sense is almost an easy step of deciding to offer health insurance to children, then moving beyond that to extending health insurance coverage to adults who are working low income?
NANCY SWIGONSKI: I think that’s an area actually that needs a lot more research because as you said, young adults are the most likely to be uninsured. But as you look at it, young adults are mostly likely to be healthy as well. And so they may not want to put resources towards health insurance when, in fact, they feel invulnerable and don’t feel that they need it. So I think there’s actually barriers on both sides in that many young adults working low income jobs that don’t offer health insurance, but I think there’s also a barrier on the side of recognition of need for health insurance as well.
SUSAN DENTZER: so they may sometimes be in a position where they’re in effect offered health insurance, can’t afford it or decided that they can go without it.
NANCY SWIGONSKI: Exactly.
SUSAN DENTZER: Do we know how prevalent that is?
NANCY SWIGONSKI: I don’t think we do know right now.
SUSAN DENTZER: You sometimes, I presume, see patients where a child comes in now and is covered by Hoosier Healthwise. The parent is not, and the parent is uninsured. What do you do in a situation like that?
NANCY SWIGONSKI: We have a wonderful program here called Wishered Advantage that covers adults in those same income levels, and so we do, in fact, have a local health insurance program for children – I mean for adults.
SUSAN DENTZER: What do you do in a very immediate sense, though? I bring my child in, my child has got a strep throat, you logically ask me if anybody else in the family is feeling some symptoms and I might say yes, I am, but I don’t have health insurance. So do you encounter situations where children may be brought in by their parents, the children are covered Hoosier Healthwise, but the parents are uninsured?
NANCY SWIGONSKI: Yes, and that’s a really tough situation because obviously you’d love to give medication to everybody and the family, but it’s not always possible. And what we do is refer them to any health insurance program such as Wisherd Advantage that we know about. The other possibility is in some instances we can send them to the public health department, but that’s obviously a real barrier for families to have to go to visit multiple places for the health care for one problem.
SUSAN DENTZER: In your experience again as a pediatrician, treating some of these kids, are there other health issues that arise for uninsured children that you are particularly troubled by? We talked about asthma, we talked about ear infections, some of the common complaints of childhood that if intervened quickly enough with medication can usually be cleared up very quickly. Anything else that you see?
NANCY SWIGONSKI: I think one of the things that is maybe not as well recognized, but I think is really true is when I go through a well child care exam, one of the things we always address is school issues, domestic violence issues, other kinds of anger control problems. We ask if there’s guns in the house, and those kind of preventive things and social issues that we may be able to intervene in are not addressed if a child is not coming for health care. And uninsured children do not tend to come in for regular well child care visits.
SUSAN DENTZER: So the kinds of things that we know which is that childhood injuries are the biggest killer of children up to age 14, those kinds of things that you might be in a position to influence in some way as a provider and you can’t influence.
NANCY SWIGONSKI: Exactly. Exactly. And I think that one of the common things that we see is learning problems or school problems, and again we have a large focus here on school and school issues, and even have people that will go and attend school conferences with the children and their family if there are problems, and obviously, we can’t do those kind of interventions if we’re not seeing the patients.
SUSAN DENTZER: Are these kinds of problems motivated by things like ADHD, those kinds of issues?
NANCY SWIGONSKI: ADHD, or learning disabilities.
SUSAN DENTZER: So again another important reason why, if covered, these things can be dealt with.
NANCY SWIGONSKI: Exactly.
SUSAN DENTZER: Finally, do you think that if you stacked up Indiana’s experience against what you know to be the case by virtue of being a health services researcher as well as a pediatrician, and a mother, and everything else that you do, do you think that Indiana is ahead of the pack, in the middle of the pack, behind the back in the way it’s approached this spectrum of issues relative to the uninsured? What’s your assessment? Where would you put Indiana?
NANCY SWIGONSKI: I think Indiana is leading in terms of coordinating of children’s services. I think as you mentioned, we still have a long way to go and a lot to learn about covering entire families for health insurance. But I think the great thing is that we’re making those steps towards doing it.
SUSAN DENTZER: And where do you think the state will be at the end of this decade in that area?
NANCY SWIGONSKI: I would hope that we’d be in partnership with private insurance health plans to really offer health care coverage for the entire state. Anybody who needs it.
SUSAN DENTZER: By virtue of subsidies being made available or does it matter what the structure is?
NANCY SWIGONSKI: I don’t think it matters what the structure is. I think as long as people can get access to care when they need it, that’s the key.