Jeffrey: Right, right, thank you Faye. The Shriners really started as a Masonic organization back in the 1870s or so. And of course the Masons got started and then they decided to develop sort of a separate fraternity from the Masonic organization. And this fraternity then developed and they sort of developed their ceremonial system and customs and things. It started out of a kind of a gentlemen’s group in New York. And eventually the whole concept kind of took off throughout the country. And so it just, you know, became another fraternal organization, part of the Masons’ group. Around the 1920s or so, they decided, hey, it’s time for us to start doing something in terms of philanthropy. I mean they had been involved in some philanthropy throughout their history, but it was more on a local level. And I believe it was at a convention somewhere that they decided we’re getting a reputation for parties and elaborate functions and dinners, but we need to really do something to set ourselves apart from just another fraternity. So they decided then to focus on care of children because one of the members had been influenced by a visit he had made to a Scottish Rite Hospital in Atlanta. So in their convention there came a resolution, which was passed that each member of the shrine would donate $2 to establish this system of hospitals for children. And they decided to go nationwide, rather than just locally. So the first hospital was built in about 1922, in Shreveport, Louisiana. It was dedicated to the care of children. Polio was a big thing back then, so that is kind of where the care initially concentrated as well as other pediatric, orthopedic afflictions, such as club feet and other things. And then they just kept building and building hospitals. So now there are currently 22 different Shriners Hospitals throughout the country from Honolulu to Mexico City and one in Canada, and the rest throughout the United States. And we concentrate on providing pediatric orthopedic, burn, and spinal cord injury rehab care for children. And all this care is provided free of charge to the patients and their families. And we accept no government monies or insurance company monies for care that’s provided in this system of hospitals.

Faye: You know, Dr. Ackman, that’s something that people are usually really amazed about. Why did--

Jeffrey: Oh yeah, people that can’t believe that it’s free care. And they’re always guessing, "What’s the catch?" Well, the catch is there is none.

Faye: So could you share with us a little bit of information about why the Shriners decided to provide free care, how the hospitals are maintained without receiving any money from the government, and if children who have either public or private health insurance can be served by the Shriners?

Jeffrey: Well, we accept really all patients, regardless of their insurance status. And it was, as I said, it was kind of in the charter or the resolution of the Shrine organization that we would establish this system of hospitals to provide free care for children. And they’ve stuck with that ever since. And it’s kind of a great source of pride for the fraternity that we’ve helped over 650,000 children since our inception, all at no cost to the family or the patient or any insurance companies. So that’s really kind of the focus of their dedication, is to provide this care for children. They’ve just decided that’s something they want to do, that’s how they give back to the community, and it’s a strong point of the Shrine. The patients who come in, they fill out an application form, generally. It’s reviewed by the Chief of Staff and the Board of Governors, and if they have a condition that we think we can help, then they’re generally accepted for treatment here at the hospital. They come into the hospital, they have their procedure done, and then are discharged from the hospital and there’s never any bill generated to anyone.

Faye: Well, that’s really wonderful. Do most of the Shriners Hospitals have a waiting list of children who need services?

Jeffrey: Yeah, current--I’m here at the Chicago unit, and currently our waiting list is about 500 and some patients. So, you know, we’re a fairly busy hospital. We do a lot of work, and there is a waiting list of about 500 or so at the Chicago hospital. And I imagine it’s, you know, there are some waiting lists at the other hospitals in the system.

Faye: Okay, now some questions about some of the other activities of Shriners Hospitals, because I know you focus on the care of the child in the hospital as well as what happens when the child goes back home. Could you tell us a little bit about the relationship between the Shriners Hospitals and the Maternal and Child Health Bureau’s Division of Services for Children with Special Health Care Needs?

Jeffrey: Right. The Shriners Hospitals have a very collaborative relationship with the Maternal Child Health Bureau, and this was sort of developed back in the 1990s when the Shriners got together with state and federal governments to increase access the care, services in the public and private sector, so that we could ensure sort of comprehensive care after they leave the hospital. And there was a program developed called CHOICES, which stands for Children’s Healthcare Options Improved through Collaborative Efforts and Services. And there are care coordinators here at the Hospital who will interview families as they come for treatment or their initial visit. You know, determine the needs of the child, and then they’re very helpful in coordinating the services once the child goes home from the hospital with the state, local, federal agencies. So that avoids duplication of services, makes sure the patients have access to these other organizations, and makes sure the child can get what they need in terms of working towards durable medical equipment or therapy services on an outpatient basis, home visits for home health aides or nursing care--all that sort of thing. And it’s been very successful. We started initially as a pilot project in a few of the Shriners Hospitals in a few of the states, and then it’s really expanded sort of nationwide since there. And it’s been, I think, very much appreciated on both sides of the coin, both from the Shriners Hospital System and from these other local, state, and federal agencies.

Faye: Well, that’s wonderful. I’m really glad that this system is in place. And could you tell us a little bit more about coordinating the services with Title V back home with the child’s own doctors and care providers at home, and also with children who may be covered by Medicaid or the State Children’s Health Insurance Program?

Jeffrey: Right. Well, as far as the Title V, we here at Chicago basically cover children from about a five-state area, that being Wisconsin, Iowa, Illinois, Michigan, Indiana--we even get parts of Ohio. So each patient and their family when they come into the hospital are basically assigned a care coordinator as I referred to earlier. And these care coordinators educate the families about the Title V programs; they connect them with their local offices to assure that they can get services; make sure that they’re followed up on an outpatient once they leave the hospital. And we’ll kind of work together with them and it’s kind of a give and take. Such, for example, maybe we’ll do the surgery, and we can have then the outside agency maybe pay for therapy that’s needed on the outside. We may admit the child for some rehab, stay here at the hospital, and perhaps (inaudible) and contact the agency to help the family in assistance in getting a wheelchair. In terms of the primary care provider, Medicare and Medicaid and things, we’re very attentive to keeping the lines of communication open with each child’s primary care provider. Again, when the child comes in the hospital, we ask the family to identify their primary care provider. They sign a release form so that communication can go on between the hospital and the primary care provider in terms of what’s happening to the child, what the needs will be, what’s planned in terms of surgery or rehab or different types of therapy the child will need. And any of our health care team members then can be in contact with this primary care provider to provide the information and answer questions, and try and arrange for follow-up. We also sponsor many different seminars and things like that. For instance, we have one coming up here at the hospital in April about for the primary care providers about how they can be sort of a medical home for special needs children, how they can work with DSCC, the Division of Specialized Care for Children to do care coordination, and that’s going to be for the pediatricians and family practitioners and other primary care providers. So what we do also, the care coordination is, you know, for patients who are on Medicare or Medicaid, or maybe they don’t have any insurance or any coverage whatsoever, we will work with the family to try and get them hooked up with all these different agencies, again, local, state, federal, private or whatever is available to ensure that the child can receive services, is eligible for services, has access to these services and receives the right things.

Faye: You know, now I have some questions for our parent speaker, Jane Scott. Jane could you tell us please a little bit about your family, your child with special health care needs, how you found out about Shriners and made the decision to bring your child to Shriners for medial care?

Jane: Okay, well, my son, Brandon, was born 14 years ago, and basically he was born with congenital limb deficiencies in all four limbs. He was born here in Indianapolis at one of the major hospitals here. He was a rarity in terms of his condition, and so we were looking at all our options, all our resources. I happened to have an uncle at that time up in Fort Wayne, Indiana, who was a Shriner, and he was the one that mentioned to me that we should probably apply and kind of brought that whole application process to us. But it was through him that we applied to go up to Shriners and have Brandon evaluated, and at that time we did take him up to Shriners to have him evaluated to see what was needed.

Faye: Jane, before we go on, could you please explain to us what a limb deficiency is?

Jane: Sure. Basically, Brandon, all four limbs--it looks like the blood flow stopped at his limbs at some point, so he’s pretty symmetrical. He has got about a third of an upper arm on each side, has no hands, has what they think is the tibia bone in each of his legs and a foot--not a normal ankle and foot. So he’s just--I mean he’s a very short stature. He does have growth plates, so that he has grown, you know, *along as *it *goes. He wears four artificial limbs, four prosthetic limbs to school and in formal situations, but he’s pretty good without them too. He both goes with and without.

Faye: And was there care available for Brandon in the community where you and your family live in Indiana?

Jane: Well, we did have him evaluated at Riley Children’s Hospital too, here in Indianapolis, and like I said, again, he was a rarity. And one thing I found at Shriners, I didn’t feel there was that sense of rarity when we walked in there that they had seen this before. Where at Riley it was--I’m not sure if they’d seen any but not as many. That was the sense I got as a parent going to Shriners that, "Oh, we’ve seen this before. We kind of know what to do," which was very comforting and encouraging, you know, to have that kind of evaluation available.

Faye: And so you started taking Brandon there when he was a baby?

Jane: When he was a baby we had him evaluated there.

Faye: Yeah, how did you get him to all these appointments? I’m sure there were a lot of them.

Jane: At that point, his dad and I would drive him up there. It’s only about a three-hour drive. And our history with Shriners kind of goes in a different pattern here because we had him evaluated then we--well, at that point we're on--Title V was Crippled Children at that time. We did get on that here in Indianapolis and chose to have our care back here in Indianapolis at that time just because of some family things that were going on, and had him cared for here. Then we moved to Madison, Wisconsin. We were transferred there, and at that point he was put on a Medicaid waiver, a Katie Beckett Waiver way back when waivers weren’t even in Indiana at that point. It was something new for us, and so we got his care through the Children’s Hospital at the University of Wisconsin, Madison. Got transferred back in 1994. At that point, we were no longer eligible for Crippled Children's here. We did have private health insurance, but the private health insurance didn’t even touch what Brandon needed in terms of limbs, you know, the periodic changing of limbs as he grew and that kind of thing. They would have--I think at that time our insurance would provide for like one set of limbs in a lifetime or something like that, looking at more of an adult need than a pediatric need. So at that point we did go back up to Shriners, and he was served at Shriners for quite a while on a consistent basis. And that was when he was about five years old when we started going back to Shriners.

Faye: How long did it take after you made the application to get an appointment to receive care?

Jane: Well, it’s interesting that Dr. Ackman talked about a waiting list because I don’t recall--this is 14 years ago--I don’t recall a long waiting period for us. I remember there was an application process. It had to be reviewed. It came back to us whether they were going to accept him as a patient, but it all went pretty quick. I mean I think he was originally evaluated it was prior to a six month birthday. I would think it was somewhere within four, he was four to six months old, so obviously we didn’t wait a real long time.

Faye: And I think Jane has also pointed out something that is a concern for all of us who care for children with special health care needs in this country: Each state has different programs and different eligibilities and different services. And so a child may be in one state and be eligible for coverage, and then, as the *Scott family did, move to another state and found out that the child at that time was not eligible. So it can cause a lot of difficulties for Brandon and many other children who have complicated special health care needs.

Jane: Exactly, exactly. And that was our--we moved back and it was just, all of a sudden, it was a big hole, you know, in how we were going to be able to look at his care.

Faye: And what did you like best about the care that Brandon received at Shriners?

Jane: Well, at that point you talk about how we got up there. We got involved with *Moriah Temple here. They have a transportation program that would take you up in a van and stuff like that. And that was just a real wonderful thing for us because it gave me a chance to just sit back and be with him and be with other parents and other patients. And even the Shriners, the guys who would drive us, the Transportation Club, were a real addition to our life. They were just really wonderful men. I mean they went above and beyond what I would call the call of duty in terms of helping get Brandon up there, getting him in and out of the van--they were just kind of an extension to who I was in the family. And so that was real helpful. They would pay for our meals on the way up and back, and like I said I thought above and beyond the call of duty--so that was really helpful.

Faye: Well, that sounds wonderful, and I know many surveys of families of children who have special healthcare needs cite transportation as one of the biggest problems. And I think, Jane, when I first me you, you told me about that and I said, "I can’t believe that." Transportation is usually so very difficult, and this is just too good to be true that there are dedicated volunteers out there who not only will provide free complex medical care for children, but also provide transportation and family support.

Jane: Exactly, exactly, and we even at one point a couple of times--I think there was two different times--we went up and actually stayed in the hospital for a week's stay. One was during a summer time, and one was for a spring break. And they weren’t for surgeries per se; they were for therapy. I was having trouble finding therapists locally that knew how to work with a child that were to hook and cable, and how to feed himself and just some basic daily living skills. And so we went up and lived for a week in the hospital and just did rehab everyday, and they taught me some things that I could bring back home to continue with. And so that was another--those were both wonderful weeks for Brandon and I to be able to stay up there, first of all, free of charge, but also just the care that he got. Like, once again, like I said before, I felt like they were experts, and I have to be honest as a parent, and I talked with the other parents too, you think, well, it’s free, it’s got to be not as good. And my--what happened, what my experience was is that they were the experts in Brandon’s condition, and far probably over some of the local people we had talked to. And like I said they had therapists that had worked with kids before with these kind of conditions, and so that was really encouraging.

Faye: Well, we always find that our best sources of information are other parents, and it sounds like this was exactly what your son needed. And even the downside of having to be far away from home was balanced with the other kinds of support that you got. I’d like to ask Dr. Ackman to tell us a little bit more about the role of the child’s family, while the child receives care at Shriners.

Jeffrey: Well, we’re a very firm believer, kind of in the family-centered care for children, and the focus should not only be just on treating the child and their medical problem, but you have to treat the child themselves. And that involves family, relatives and self-image and things like that. So we encourage the parents--one parent can stay with the child during their whole time of hospitalization. We try and get the children up and out of their rooms. We have a big mall here in the hospital where they get their lunch and their supper and daytime activities with recreation therapists, play therapists, and just mingling with the other children. So they are treated for the medical condition but we also have to treat the patient too, you know, the entire patient and get them, you know, how are they going to get back, integrate back into their community, back into their school, back into their home, how will they interact with the other siblings and parents--all those things that are important to treatment of the child. You can’t just treat the crooked bone. You got to treat the rest of the child too, and I think that’s stressed very much here. And we try and involve the patients and families in their medical care, and your role as a physician is that you present the options to the patient saying, "Here is what we can do," or "This is what we can do. What do you think is going to work out best for you in your current situation? You may need this little operation now and a big operation later. What’s your input? What’s your decision?" So it’s very important to involve them in that role of decision making because they’re the ones who have to take the patient home and care for them, and we also try and ensure that that care goes on, that they receive services in the community, that they are--we don’t just treat them and send them out. They come back for follow-up, so we can see how they’re doing. See how things turned out. Are they having new problems arising that we can help them with? So it’s the follow-up care, and it’s also taking care of the entire child.

Faye: And, do you use the--like the history of family involvement as one of your criteria in deciding which children are accepted to Shriners?

Jeffrey: Yes and no. I mean we have children who are foster children. We have children who are adopted, so it’s wonderful if they have a family, but it’s not a prerequisite to being accepted for care here.

Faye: And do most of the children have a family member stay with them when they come into the hospital?

Jeffrey: Generally, the younger children do and they’re comforted by that--by having a friend or family member stay with them. But the teenage children probably don’t want mom or dad around.

Faye: Okay, that makes sense. And does Shriners provide only inpatient care?

Jeffrey: We have outpatient care but it’s on a limited basis. There is a large waiting list for outpatient services such as physical or occupational therapy or speech therapy, but as Ms. *Scott reiterated we can admit a child for therapy here, just for therapy. And I kind of wonder if that’s possible in any place outside Shriners where you can get through the insurance company or managed care to have your child admitted for a week of intensive therapy, or two weeks of intensive therapy to sort of get them up and going such as if they receive a prosthesis. Or, we have our spinal cord rehab program where the child is acutely taken care of elsewhere, but then their insurance or coverage runs out after, generally, I think it’s about 30 days of rehab. Well, the child may not be ready to go back into the home environment, into the school, into the community, so we will admit him here at Shriners for therapy, assess them, do the rehab therapies, do the equipment assessment to see what kind of chair they will need, what things they will need in their home to assist them. And we do that for children who just say after surgery they’re having a little trouble getting going again, we can admit them just for therapy, get them up and going and then discharge them from the hospital. So I can’t imagine that happening in many other places, where you wouldn’t have somebody on the phone to you the very next day saying you need to get this patient out of the hospital because they’re just in here for therapy.

Faye: You know you brought up a very important point. It’s something that’s very vital resource for many children with special health care needs. Because of the vast changes in our insurance system and the fact that more and more families are covered by managed care, the rehab stays in intensive therapy are not being covered and causes a great many difficulties, and makes it hard for the children to reach their potential. It makes it difficult for the families to pay for it, and certainly I know my own daughter who has cerebral palsy, I say that her surgeries were staggered to reflect changes in the health care system. The first orthopedic surgery she was four years old. She’s 20 now. So she had a two-month rehab stay with long therapy sessions twice a day, seven days a week. Then when she was ten years old, she was supposed to come--I *remember for how many months on an outpatient basis to the hospital. Then when she had the last surgery, when she was 15, she was supposed to have intermittent home health visits for therapy, and we ended up having to go through appeal to get a rehab stay for two weeks. So I definitely know what you’re talking about, and know for the family and for the child recovering from surgery, how hard it is to do this on an outpatient basis or an at-home basis.

Jeffrey: Right, I think--you know, a lot of the--through the government agencies and insurance companies base things on an adult model.

Jane: Yes.

Jeffrey: I have a lot of parents say, well, this and this happened to our child, or she had a big hip reconstruction or spinal surgery or something else, and the insurance company pays for 30 or 60 therapy visits, and then that’s it. Well, if it’s an ongoing condition that’s going to be for lifetime, 60 treatments may not be enough or 30 treatments may not be enough. You need ongoing therapy, but the insurance company will not cover anything that is sort of labeled maintenance or preventative therapy, and so there’s not a good sort of children with special healthcare needs' model, I think, for the insurance companies yet to really base their reimbursement upon. Everything is based on the adult model, which doesn’t apply to these children.

Faye: Well, thank you for bringing that up because that’s something that we have been focusing on for the time that our project has been running, and for the other projects looking at managed care and children with special healthcare needs. And what can we do to forward quality of life for appropriate healthcare. For affordability, it’s extremely complicated, and it seems like Shriners have something really good going. And another question for you about Shriners, do the Shriners Hospitals advertise their services to the public or conduct public awareness activities?

Jeffrey: Well, we don’t really advertise a lot, and there’s a reason for that. And that reason is the monies that are raised--the monies are raised through donations, wills, we have an endowment fund, there’s fund raising activities throughout the different Shrine Temples throughout the country, and each Shriner is assessed hospital dues. So that’s how the hospitals are funded, but they have decided that we will do really not a lot of advertising, though we do public service announcements. And we don’t do a lot of advertising because we don’t want a large advertising budget. Greater than 95 percent of the monies we raise goes to the operations of the hospitals, so we don’t have a big costly ad campaign with TV spots and media blitzes here and there, because the money we raise goes to patient care.

Faye: Again, are the employees at Shriners volunteers or are they paid?

Jeffrey: They are paid. I mean it’s hard to get people to do work anymore for free--so they are paid, but they’re a generally a very dedicated staff. It’s a wonderful place to work, because it’s really sort of a family. And we pay attention to the patients, to their families. They’re generally small hospitals that are dedicated to the care of children, and so I think generally everybody enjoys working at such a place because we can do what’s right and what’s appropriate, and give the children what they need in terms of the services they require.

Faye: How would you recommend that families, medical providers, or insurance companies get more information about the Shriners Hospitals?

Jeffrey: Well, we have a 1-800 number which connects you to our headquarters in Tampa, and if I can give that number out it’s 1-800-237-5055. And that’s the national number for the headquarters in Tampa. And they will then direct you to the appropriate hospital and whether that’s a burn unit or an orthopedic hospital or a hospital that does the spinal cord injury rehab. The local number for Chicago is 1-888-385-0161 and whether it’s a--most of our patients are referred by word of mouth, but we also get referrals from local Shriners in the community, from primary care providers, sometimes from therapists and other affiliated healthcare personnel. So generally the families are sent an application form. They fill it out. They send it in, and then they’re set up with an initial appointment. And then we meet with the families and set up a care plan for their child as far as surgery or follow-up visits, or what we think the appropriate therapy is or medical treatment or whatever they need. And we try and coordinate the myriad of services that these special children require.

Faye: Thank you, Dr. Ackman.

Jeffrey: Thank you.

Faye: We will have the web site link to the Shriners' web site on our resource section. We will have other links about resources available from Shriners. They have a very, very extensive web site and many, many resources and lots of information, a very large bibliography, and that will be on the resource section of this webcast for everybody in our audience. Jane, I’d like to ask you while your son Brandon was getting care at Shriners, were you ever asked to donate money or to get involved in fundraising activities?

Jane: No, not really--never asked to donate money at all. We, because of some of the relationships we built through some of the Shriners here at *Moriah Temple, we did go--well, first of all, they had things like Easter parties and Christmas parties, and that kind of thing for the patients so we’d go to those, but we were asked a couple of times to come down. They had a clinic once a year. It was kind of an open clinic where kids could come in and be evaluated if they were going to be eligible for maybe for care at Shriners. And a couple of times Brandon and I went down just to kind of intermingle with people and talk with them as a family that had care through Shriners, if parents had questions and stuff like that, which we were more than happy to do, but never asked to donate any kind of funds or anything.

Faye: Well, that sounds like a really good idea, you know, to have the parent-to-parent and family-to-family connection to talk about what the care is like. You know these are kinds of things sometimes that families wonder about and might also feel uncomfortable asking the medical provider about. And how did Shriners coordinate Brandon’s medical care with his pediatrician back at home?

Jane: They kept very close contact. His pediatrician at home was really more than happy to communicate with him because he had never had a patient like this before. He was willing to do most anything they really needed, and like I said we had trouble hooking up with a therapist here. That’s always been a problem we’ve had, most people, I used to say they can put men on the moon, but no one could teach my two or three-year-old with two hooks how to feed himself--but it seems like they had some of the expertise at Shriners. But they did keep in close contact. We did go up to Chicago to a prosthetic shop that the Shriners referred us to for his limbs at that time, so we did most of our care of that kind even up there, even if he had a repair or outgrew, of course, outgrew limbs, that kind of thing, we kept our contact up there with their prosthetic shop.

Faye: Does Brandon currently have some type of health insurance?

Jane: Right now he’s on a primary insurance through my husband’s employer, which again, does not really touch his special needs very well. They will pay a little bit, but he’s also finally on a Medicaid waiver here in Indiana, and that is the reason, one of the reasons why we don’t currently get care at Shriners. He is still considered a patient up there. I guess he has a number and everything, but he is served through the Medicaid waiver. And I guess what happened for us as Brandon got older, the issue that stood in the way for us getting care up in Chicago was it took a whole day for us to go up, even if he had a problem with a limb getting broken. A lot of times we did some shipping of limbs, but if they needed to see him--and as he got older missing a whole day of school did start becoming an issue with his education and stuff because he’s in a regular education track and that kind of thing, so that became an issue. But (inaudible) and I were talking about that we probably need to have him evaluated again at Shriners just to make sure that we’re, you know, you want to make sure you’re getting all the best for your child.

Faye: Okay, and Dr. Ackman, what advice do you have for other doctors about getting care for their patients at Shriners Hospital?

Jeffrey: Well, I’d say just know who we are and what we do. I mean a lot of people I think in the community have never heard of us, and that’s maybe because we don’t advertise very much, you know, it’s all word of mouth. For those primary care providers who are looking for assistance with a special needs' child give us a call, and we’d be happy to work with you. We’ll talk *to things with you. We keep you informed as far as what’s happening with your patient, upcoming surgeries or therapies, and it’s a partnership. I mean we do our part, and they do their part all in the best interest of the child. And so if you have any questions you can contact the hospital for an application for your patient, or you can speak to one of the attending physicians here directly. I mean most of us are here full-time, and if you have any questions give us a call. We have a full-time pediatrician, pediatric intensivists, orthopedic surgeons, as well as other surgical specialties represented such as neurosurgery, urology, general surgery, and we have also hand surgeons, neurologists, genetics, a whole slew of sort of support services, so please contact us. Have the family fill out an application. Send it to us, and we’d be glad to work with you.

Faye: Well, good, and what advice would you have for families who might be interested in having the child receive care at Shriners?

Jane: Well, Faye, as you know I work for a parent-to-parent here and I talk to parents everyday, and I’m referring people all the time to Shriners. And I think one of the biggest misunderstandings that from a parent point--two misunderstandings--that I hear over and over again from parents is: One, they think of it as (inaudible) society, that you have to have your low income to have the free care, and so that’s one thing I have to continue to clear up for parents. And the second thing is like I said earlier that it’s sort of a less than--it’s kind of a last resort. They’re going to get a less than care, and I have to kind of clear that up for parents. So I think those are two, I see, as really big misunderstandings that I keep hearing from the public or from parents of kids with special needs, and so I always encourage them to apply and at least be evaluated through Shriners.

Faye: Okay, and Dr. Ackman, do you have any advice for families who may be interested?

Jeffrey: Yeah, please contact us. Again, call the 800 number. Let me give that to you again, so contact us at 1-800-237-5055. Send us an application. Reiterating what Jane said, a lot of people have this impression that if it’s free, it can’t be good. Well, I mean it’s not really free care, because there are people who are raising money for the hospital. These people are paid to work here. We choose to work here, because we enjoy working here. And if your child has a condition that we can help, generally, they’re accepted for treatment. I mean less than one percent of the applications are ever turned away for financial reasons. So basically if your child has something that we think we can do something for, you’re likely to get accepted, no matter how much money you make, or what your insurance coverage is or lack of insurance coverage.

Faye: Well, that’s really good to know. We appreciate both of you talking frankly about this very delicate and often confusing issue for families. And I know so many families encounter paying for insurance coverage for the child, but having the special health care needs denied or deferred or limited, and it becomes very, very stressful, so it’s wonderful to know that there is a resource like Shriners Hospitals available for many children. Now a question, I know that there is a whole network of Shriners Hospitals, are people required to apply to the one that is in their geographic region?

Jeffrey: That’s more likely where they’ll be referred, unless it’s for something special like a burn or the spinal cord injury rehab. For the burn units there are four units across the country. If it’s an acute burn then whoever the primary care physician is, or whatever member of the medical team, can contact the chief of staff of the burn unit directly. And those burn units are in Sacramento, California; Galveston, Texas; Cincinnati, Ohio; and Boston. So if it’s an acute injury the child generally can be accepted right away assuming there is bed availability in that. If it’s for follow-up care for burns, such as further surgery or complications, then they can just contact the hospital. For the spinal cord injury rehab units, which are also in Sacramento, Northern California, here in Chicago, and in Philadelphia, they would just contact the hospital, and they would be directed towards whatever their closest hospital is for their geographic region.

Faye: Well, thank you for explaining that, and I think the other thing that we need to stress is the family support component of receiving care at Shriners, which is really remarkable. And obviously a great many families have to travel quite a distance to receive care, but to know that there is support available and just as you were talking about that, I was thinking again about an experience I had a few years back when I was a stem cell donor for my sister who lives in Seattle. I’m in Chicago. And in talking with the people at the hospital where she was getting care and asking them, "Well, what happens if I don’t have the resources to do the travel out there and the lodging and the meals?" And she said, "Well this is the patient’s responsibility and their family’s responsibility, and if people don’t have these resources we don’t accept them." I find that really troubling, so I say, again, Shriners has addressed the psychosocial part, as well as the medical part so I’m very impressed by this.

Jeffrey: Thank you.

Faye: Thank you. And we have just a few minutes left in our webcast, and I’d like to know if either of you have some closing comments or additional advice for managed care organizations, for families, for professionals about working with the Shriners Hospital System?

Jeffrey: Jane, would you like to go?

Jane: No, I can’t think of anything. I do have one question for Dr. Ackman, and I don’t know if it’s opening a can of worms but--

Jeffrey: Okay.

Jane: At one time, I know that Shriners worked with kids with cleft pallet, is that still--

Jeffrey: Yeah, we still do that too. That’s another whole facet, not every hospital does that, but here in Chicago we do. We have plastic surgery as well as cranial facial surgery services, so children with cleft pallets, cleft lips, other cranial facial anomalies where they have a malformation of part of their skull or their face or something like that can be seen here at the hospital. It’s done in conjunction with dentists and orthodontists as far as their dentition and their jaw. And so those patients can also be helped here and they would just, again, take a regular application to the hospital, and then receive that kind of service here in Chicago as well. So I guess you know my advice for managed care organizations and insurance companies is work with us. We’re more than happy to see the children. We’re more than happy to take care of their surgery here in the hospital, but perhaps they can help us out by providing some of these outside services that we think are necessary for the complete care of the child such as durable medical equipment, braces, prosthesis, appropriate therapy on the outside, home teaching, home health aide, so please kind of be a give and take. I mean we give and then we may want something in return from the managed care insurance, because we’re obviously saving them money by providing care to their enrollees here at the hospital, so just work with us and be willing to bend a little bit.

Faye: Thank you, that’s very helpful advice. And, Jane, do you have any closing comments or advice for us?

Jane: No, I can’t think of anything. I just know that Shriners was definitely a lifesaver for our family and for my son. He still has very fond memories of time in the hospital and stuff. I told him I was doing this today, and he was reminiscing about his times up at Shriners, and the Shriners that had touched his life, and the medical people up in the hospital and stuff. And definitely was a life changing kind of thing for him, so I was very thankful for Shriners being there.

Jeffrey: Tell him we all said hello.

Jane: Okay. Dr. Ackman was his doctor.

Faye: Okay, well, maybe we’ll have to work with him in the future. He will be a spokesperson or a Shriners’ member when he grows up.

Jane: Oh definitively, he’d love to do that.

Faye: Okay, well, that sounds good. It’s also wonderful to know that you feel committed to referring other families to the Shriners’ Hospital System.

Jane: Oh definitely, yeah.

Faye: This is why we’re here today to talk about alternatives, about other options, about people doing something positive to help children with special healthcare needs. And we’re very, very happy to have both of you here today sharing your experiences and your knowledge with us. It’s been a pleasure doing this webcast with you, talking about children with special healthcare needs and the Shriners Hospital for Children system. I’m really grateful that you made the time to share your expertise with us, and I want to thank both of you.

Jeffrey: Thank you.

Jane: Thank you.

Faye: 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 uic.edu/sph/cade/kidsmco. Our telephone number is (312) 996-2233. We’re located in Chicago, Illinois, and we’re on Central time. We hope that you’ve enjoyed this broadcast, and that you’ll join us for the upcoming broadcast in the series. They’re scheduled for the fourth Wednesday of each month at 1:30 p.m., Central time. Please take note that once we’ve aired our webcast for the first time, it’s then archived on our web site and you can access it at anytime, day or night. Thank you for joining us.