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Medical Homes for Children with Special Health Care Needs

Originally broadcast: March 28, 2001

Faye Hello and welcome to our webcast from the Quality Community Managed Care project from the University of Illinois at Chicago, School of Public Health. I'm Faye Manaster Eldar, your moderator. I'm the Family Coordinator of the Quality Community Managed Care project and I'm happy to be with you today. This is another webcast in our ongoing series in the Special Kids And Managed Care project.

Today's webcast is about the medical home for children with special health care needs. We are very pleased to have two experts with us today; Dr. Dawn Haut who is a pediatrician at the Infant Welfare Society in Chicago, Illinois and Ken Slaw who is a parent from Buffalo Grove in northern Illinois.

Dawn, I'd like to start off with you please.

Dawn Okay.

Faye Could you explain to us what exactly is a medical home and where did this term originate?

Dawn The term medical home really does not apply to a physical Structure. It's not a building or hospital. It's more of a an approach to the way that health care services are delivered to children to make sure that they receive quality care in a place where they are comfortable, and where there's mutual respect between the parents and the families with the physician. It’s aimed at looking at three, four, five, there are seven different things, and I'm going to just read them off this list. It's looking at making sure that services are acceptable, that they're family centered, that they're continuous, comprehensive, coordinated, compassionate and culturally effective. And the term originated from a pediatrician from Hawaii, Dr. Cal Sia, who was instrumental in getting this whole concept more, formalized and nationally adopted.

Faye And what is the role of the American Academy Of Pediatrics in promoting the medical home?

Dawn The American Academy of Pediatrics has been instrumental in getting this term out there to pediatricians and to help educate families about this whole concept, and the importance of having a medical home for all children. Dr. Sia is a pediatrician who's very involved with the Academy and he explained all the work that he was doing in Hawaii and the success that he was having and really talked a lot about his project. The Academy formally adopted this medical home concept in 1992 and published it in a policy statement, which went out to all of its members. The Academy has also been working with the Maternal Child Health Bureau on a federal level and as a result, have a collaboration entitled the National Center Of Medical Home Initiatives For Children With Special Needs. And the goal of that initiative is to insure that all children with special health care needs have access to a medical home. And that national center we'll probably refer to during this conversation, that it's really important, in terms of getting educational and advocacy materials out to families and to physicians as well as evaluation tools and contact networks. It really serves a lot of purposes.

Faye And why is this an especially critical issue for children who have special health care needs?

Dawn It's absolutely critical in the care for children with special health care needs because it can serve as the center for all of the medical and non-medical services that are needed for the children. A lot of children with special health care needs don't necessarily have the barriers and the challenges of receiving the specialized care they need, but it's difficult sometimes to find a true primary care pediatrician, a medical home where it can sort of be the center of all this activity and can help advocate for the families and help work with the families to get the services that are needed. It's really important that children with special health care needs have the same community health care services available that are geographically close and financially accessible for these children, just the same as all other children. And so this medical home would serve you know as that focal point.

Faye Now Ken, could you please tell us a little bit about your family and your child with special health care needs?

Ken Sure. My family lives in Buffalo Grove, Illinois. My wife is Ann and we have two children; Andrew who is turning nine April 4th and Emily, his sister, who is six and a half years old. Andrew, our son, has a very rare life-threatening genetic disease called familial dysautonomia which is a genetic condition where his body only has half of the neurons in his autonomic nervous system as a normal person. So he has a very medical unstable body that he's dealing with and needs a whole load of special needs to make sure that he does well.

Faye Does your son have a medical home and how did you find out about the medical home concept, Ken?

Ken Well our son does have a medical home and actually we found out about the medical home concept from our pediatrician, who, when we discovered Andrew's concerns, which really were adverse, our pediatrician sat down with us and while he didn't sit down with us and tell us that:" I'm now going to tell you about the medical home concept", all of the things that Dawn listed earlier, are things that he explained to us would be things that he would be doing for us in the continuing care of Andrew. His exact terms were that if he's going to take care of Andrew for the rest of his life, he wanted to be an integral part of our family.

Faye Oh that's wonderful. I'm really happy to hear that. Could you tell us please what kind of health insurance do your children have?

Ken We have Blue Cross Blue Shield.

Faye And is that through your employment?

Ken Through our employer.

Faye Does Andrew participate in any government programs such as Early Intervention, special education, Title V, Medicaid or Children’s Health Insurance Program or anything else?

Ken When Andrew was younger, I would say ages probably starting around one and a half years of age all the way up and through, I think, around four, three and a half to four years of age, he did receive early intervention services. And if I can put a plug in for the early intervention services, it those early Intervention services made a dramatic impact on Andrew's progression and his ability to meet his developmental milestones. So early intervention was very important to his future well-being. Andrew also is in normal, regular school at Prairie School in Buffalo Grove, Illinois. He does have an IEP, an Individualized education plan, as his needs are significant in terms of his medical needs in the school environment. Andrew has an aide who needs to be with him in the school.

Because of Andrew's condition, he has a lot of difficulty swallowing, and there's a risk with these children that they may aspirate what they swallow and have fluid go down into their lungs. So Andrew has a special tube that has been surgically put into his tummy, so that we can put fluid straight into his tummy and bypass his having to swallow fluids. So the aide in his school does some of those feedings. It's created quite a discussion in some of his classrooms and the kids have been very interested in that and what's really wonderful about it is that the kids in Andrew's class have taken an interest in Andrew and and all of all of his issues and really are so compassionate and supportive. It really brings a tear to your eye.

Faye Well, that's really wonderful. Now, did your pediatrician assist in referring you to early intervention and helping you work with the school to meet the special medical needs that your son has?

Ken Yes. Our pediatrician didn't so much refer us, but our pediatrician has been an integral part of setting up those services and has been there as a resource from the very beginning. His name is David Brotman, by the way. And he practices in Arlington Heights, Illinois. And when we needed early intervention services, you know he was right there to sit down with us and map out you know what we thought we needed. He's been there to help to coordinate that care and you know I think one of the main functions and one the main reasons why one needs a medical home, is there's a lot of medicalese that gets thrown around. A lot of discussion about your child's condition that is spoken in another language, medical language. And the pediatrician is in a very unique position to translate all that medicalese into things that a normal, you know, average non-physician person could understand and do some translation so that good decisions can be made. He's been really helpful in terms of taking all of that medical terminology and having us understand what it all means.

Faye Well I'm really really glad to hear that, because I know it can be a totally different language and it's very hard to understand. Does Andrew need to see a lot of specialists?

Ken Andrew does. He sees a pediatric gastroenterologist, a pediatric neurologist. He's had a couple of occasions where he had to have surgical procedures. So he's seen pediatric surgeons as well as pediatric anesthesiologists. On an every-day basis you know through working on his other skills, he also sees an occupational therapist, a physical therapist and a speech therapist.

Faye And does your pediatrician get really involved in coordinating all of this and sharing the reports and the information so everyone is kept up to date?

Ken Well you know it's interesting. I think that any parent needs to understand that they are going to they are going to play a major role in the coordination aspects of a child's care. And I think that, you know ,when you talk about a medical home and you talk about coordination of care, you really need to make two sides of the ledger. On one side of the ledger is coordinating the medical aspects of the care. Getting the referrals and all of the support that you need to get the services, helping to choose and make referrals to good competent specialists to go and see, making sure that all the reports come back to a central place and are interpreted for the parent, as I said before, in a way that they can understand. Those are all things that I think are very important for the pediatrician or the medical home to address.

But there's another side of the ledger too. And just listing all of those specialists, you know I'm sure out there, there's a lot of parents who just get tired listening to it. There's a lot of schedule coordination. There's a lot of driving around. There's a lot of picking up early and dropping off and staying with therapies and talking to the therapists. There's a lot of at-home programming that the therapists recommend. And those are all things that are the parents' responsibility to take care of. So, I see the coordination process as being one that's shared between the physician, the medical home and the family. And I think that one of the things that's very helpful in this process is to sit down with your with your physician staff, with your pediatrician and work out just exactly who's going to do what in terms of this coordination process.

Faye Now Dawn, I have a couple of questions for you. What is the role of health insurance in insuring that children have?

a medical home and are there any differences based upon the type of insurance that the child has?

Dawn Well I was hoping that you would ask me this question. I, of course, think that all children should have health insurance and having health insurance is much better than being uninsured. But unfortunately, just having health insurance alone does not necessarily insure that your child will have a medical home, and the definition that we talked about earlier.

There are certainly as many different kinds of insurance as there Are, you know, people and it's very unrealistic to think that there wouldn't be differences. Of course there are going to be differences based on the type of insurance that that one has. But philosophically, of course, there shouldn't be. All of these services that fall under this definition of a medical home should be covered. But if I wanted to realistically answer your question, no. They're not being covered consistently and that's one of the biggest problems. A lot of the managed care organizations now are certainly enrolling more children with special health care needs and that's been a move in the right direction. But again there's just not much consistency to this structure and so that's very frustrating for all involved.

Faye Could you tell us a little bit about the Infant Welfare Society and who they serve?

Dawn The Infant Welfare Society is 90 years old this year. And it is a not-for-profit organization that is primarily has a mission of offering primary health care services to uninsured families, primarily the working poor, in the words that are used in the mission statement. And as time has evolved, when the agency first started, the population was primarily immigrant families and then over time that has become more and more Latino. Not really not because of any plan that we had. It just sort of became that way. So we primarily see uninsured Latino families. We offer pediatric services, primary health care services to women and also dental services.

Faye And the reason that families come to Infant Welfare is because they do not get insurance from their work and they do not qualify for government programs. Is that correct?

Dawn Yes ma'am, exactly.

Faye And is there any research that's being done right now to prove the value of the medical home in caring for all children with special health care needs?

Dawn There is. But there's not a lot of pure scientific information. The information the research that's been done so far is primarily qualitative. It's a lot of questionnaires and surveys and satisfaction data from parents. So there are some things out there, but there's not a lot, although there has been the beginnings now of some outcomes, looking at improved hospitalization rates and less numbers of days in the hospital for children who have a medical home, and also just looking at their overall health, that the quality of their health is improved for children who have a medical home. But it is a little bit of a difficult concept to make quantitatively and to get data that's pure science. But there has been some move in that direction and hopefully it'll just keep getting better and better.

Faye Now do all pediatricians and family practice doctors believe in and implement the medical home for children with special health care needs? Why or why not?

Dawn Well it's a little daunting for me to represent all pediatricians and family practice doctors, but I would like to think that there aren't very many pediatricians and family practice doctors out there, who if they truly believe in the health and welfare of children, would find any fault in this medical home concept. I would like to think that that all would certainly believe in the components to the definition. The difficulty comes in actually implementing that and some of the some of the reasons why a pediatrician or a primary care physician would have some problems or find that controversial is more in the implementation of it. It's more of the day-to-day office routines. Some physicians don't feel comfortable. Some don't feel like they are adequately trained or see enough children with special health care needs to have the experience. Some don't have the office support or the ability in the office to do what's needed. The other thing is that it's not just about pure clinical knowledge. It's not just about knowing the dose of a medication. It really goes way beyond that. And a lot of training programs aren't really adequately prepared to train medical students and residents in some of these non-clinical non-medical services and issues that are needed. And so that's another place where some of the insecurities come out. And then finally I just have to throw in there because it would be unrealistic of me not to mention, that a lot of physicians are worried about reimbursement issues, you know. There's a lot of time that's involved and though nobody would think twice about it, when it comes to paying your bills, if you aren't able to get reimbursed adequately for the time that is spent making phone calls and filling out forms and having complicated conversations with with families and other people out in the community, it's something that is very daunting to many and it's definitely a barrier.

Faye Now what type of assistance in terms of resources and organizations and technical assistance is available to both families and doctors in utilizing the medical home concept?

Dawn Well fortunately, this national center that I referred to earlier through the American Academy of Pediatrics and the Maternal and Child Health Bureau, that joint effort has created this center then that centralizes all of that information. It's a wonderful resource for pediatricians because we really need that support and that help, and it's nice to know that we can access this information with one center now. And so, I would I would like to throw that out there as sort of being a clearing house for all of this information. And it's certainly one that families can access as well. It's not just for physicians.

Faye in the resource section of our website, we will have a link to the Academy's medical home national center. We'll have the telephone number, the e-mail address, the internet address and lots of the wonderful resources that are available to everybody. Now, we hear from time to time about families who have difficulties in accessing care ;and I have a couple of scenarios I'd like to ask you about from the doctor's perspective. What about a child who has been seeing a private pediatrician in his own community. The parent has insurance through their employment. But the parent loses his job and has been forced to enroll the child in Medicaid. The child has a lot of special medical needs. Can that child stay with the same pediatrician?

Dawn Well, I wish it were a simple yes answer, and theoretically it could be, but there's many things that have to be in place. One is if the Medicaid system or the Medicaid card that the family has is limited by a managed care organization and the pediatrician that was caring for the child is not enrolled in that managed care organization, then the answer to that question would be no. And if the physician who was involved with the child was not a physician who accepted families on Medicaid into their office, then again the answer would unfortunately be no.

Faye So what advice would you have for a family who found themselves in this situation?

Dawn Well it's very it's a very difficult one and I think that part of it goes to some of the advocacy groups that are locally involved and would be able to help the family find. I guess the first goal would be to try to figure out any possible way to stay with the existing physician, especially if it was a very positive relationship and it was one that was long standing. It would really be a catastrophe, in my opinion, for insurance alone to break up that relationship. But it may be that it's just education that the physician would need in terms of understanding that they could continue to care for that child even though he or she was on Medicaid. That might be one of the solutions. And I guess if all else fails, if there is just no way that the family would be able to continue with their current physician because of the Medicaid change the insurance change, then I guess it would go back to possibly this national center, or ideally just locally. For instance, through Family Voices or word of mouth, just trying to find out if there are other pediatricians in the area who offer a medical home and accept Medicaid.

Faye I see. Now another situation that happens sometimes is that children become enrolled in Medicaid or in our state children’s health insurance program. But they live in communities where there are no providers for pediatrics who accept their coverage.

Dawn Right.

Faye Is that something that the National Center gets involved with or gives advice about?

Dawn Absolutely. Actually it's a little bit bigger than even the National Center. The American Academy Of Pediatrics as a whole really encourages pediatricians to not exclude children in their practice based on their their insurance status. And again the reality of that is different. But just in terms of what our professional organizations are recommending. The American Academy Of Pediatrics is really just insistent that pediatricians don't let insurance status be an issue, but we all know it is. It's a very difficult situation.

Faye I can share that I remember when my daughter was younger and we did lose our health insurance. I was a little embarrassed, but I did discuss it with the pediatrician and with other medical specialists that my daughter was seeing and we were able to work out payment arrangements. But you know I did worry about it a great deal.

Dawn Sure.

Faye Now something else that we hear about related to the medical home is that families will sometimes use the emergency room in a way that's seen as inappropriate, and it is often because the primary care physician is not available after hours and on the weekends. So what does the medical home concept say about this?

Dawn Well one of the key components, one of the key parts of the definition of the criteria for a medical home, is offering 24 hours a day, seven days a week, 365 days out of the year availability for health care services; and so if a primary care office does not have that available, then they do not meet the criteria for offering a medical home to that family. So that's the first thing. The second thing is, excuse me, there really really are some resources out there to help pediatricians who do care for these children on a regular basis and are offering them a medical home, I’m referring to emergency care sheets. And this is not the correct name and I'm sorry that I don't have the official title of these forms, but I know that there are resources out there to help physicians and families come up with a one-page summary, ideally, of the child's diagnoses and the medications and the current plan and the desires and wishes that the family has, so that when they do- unfortunately sometimes do have to -go to an emergency room or are unable to receive care from their primary care physician on a Sunday afternoon for example, they can take that card with them and all of the contact information and a quick summary is there, so that the family doesn't have to keep retelling their story if there are other people involved who don't know the child.

Faye Would you be able to make that document available for the website so we can share it with everybody?

Dawn Yes, absolutely.

Faye Well that would be wonderful. Now Ken, I'd like to ask you about experiences your family has had when you have need to access medical care after hours or in an emergency situation. How has that worked out?

Ken Well, this is something that we do have quite a bit of experience With, unfortunately. In the last four and a half years, Andrew has had 17 hospitalizations. So we're quite familiar with this scenario. I would say to folks who are listening that number one, the emergency room or the hospital you know are not always equipped, especially for children with very rare, you know, conditions or special diseases to treat them without accessing other resources. I'd like to reinforce what Dr. Haut has said that every parent that has a child with special needs to have some type of a folder or something that they can grab quickly that holds all of the essential medical information about taking care of their child. In a case with Andrew, for example, where he has dysautonomia, where his heart rate and his blood pressure and his breathing and everything can get very unstable, if an emergency room doesn't know that or taking him to the pediatric intensive care unit isn’t aware of these things, they could actually, in trying to help Andrew, do something that may hurt him. So it's very very important, I think, at that point for the parent to be a strong advocate for their child, not to defer completely to the medical community and to be a provider of essential information to the people who are going to be providing the medical care to make sure that they know all the medications and all the possible medication reactions that are necessary. And if people who are providing pediatric care are really doing a good job, they know that nobody knows that child better than the parent and they will spend a lot of time with the parent trying to find out everything that they need to know. All of that being said, I'd also like to just weave in here the importance again of the medical home concept. There are times, for example, where Andrew will go into an autonomic crisis as a result of his disease. Due to some type of underlying illness, he will go into a situation where his heart rate will go up to 180 and get stuck there. His blood pressure will be 160 over 140 and get stuck there. You know he'll be sweating profusely. His entire digestive system will shut down and he'll be going through a period of uncontrollable retching during these crisis periods. You know this is not a situation that my wife and I, Ann and I, are comfortable with treating at home, obviously. So you know we do take Andrew to the emergency room and we have developed a relationship with the hospital and all we really need to do is call them up ahead of time and say we're on the way, and to a large degree because we've been there 16 or 17 times, they're ready for him when we get there. But it's absolutely essential if you're going to the emergency room that you contact your medical home. Even though there may not be office hours on Saturday or Sunday or you know in Andrew's case he always finds a way to go into crises at 3:00 a.m. when a pediatrician's office isn't open. It's very important nonetheless to wake up that pediatrician who is on call, let them know what is going on because then the medical home can go into action in contacting the emergency room and hospital and relaying important information and letting the hospital know and the emergency room know that that child does have a medical home and it's another part of the support that the child has.

Faye Well it sounds, Ken ,like you're very well prepared and you're a very good advocate. Now another question I have for you. Do you work with the paramedics in your community in meeting your son's needs in an emergency or do you handle everything with the pediatrician and the hospital?

Ken Thus far, we have not had to hit 911 in Andrew's case. There have been time when we've been close, because once he goes into crisis, we have to administer some medications right away and some of them can suppress his breathing. And therefore, we have oxygen in the house, as well just to make sure that his breathing is okay. But actually what you're bringing up is an excellent point I haven't really thought of before which is to contact our local paramedics and let them know about Andrew in our community, just in case they ever do have to come.

Faye There is a national initiative for emergency medical services for children with special health care needs, and we will have a link there on our resource site. They also emphasize pre-registering children who have special health care needs with the paramedics in the community. Perhaps, Dawn, you can tell us a little bit more about that.

Dawn Well. I don't know I don't know that I really can actually. It's kind of news to me.

Faye In my past work in direct service with families, we did a lot of that with paramedics or the fire department (in Chicago)and in (suburban) communities where somebody who has a lot of special health care needs lives. They get some medical history, contact information. Some communities and some counties have emergency information the family posts on their front door or in their refrigerator, as I said it's sort of like the frequent flier club, which they know about you and your needs. The things you need them to know. They know who your doctor is, and the hospital that you're using. We will post some more resources about this.

Dawn That’s outstanding. I need to click on that site myself.

Ken Yes, me too, and I certainly would register Andrew.

Faye I will make sure that you both get this information, in addition to posting it on the website. it's obvious we hope that no one ever has to use it, but we know that sometimes it's necessary.

Dawn Yes that's great.

Faye And obviously we'll share the information with lots of pediatricians . Ken, a couple more questions. What do you see as the strengths of the medical home and do you have any concerns or areas that you'd like to see improved related to the medical home?

Ken Well, you know, I think any family that is taking care of a child with special needs has a lot of extra-added stress, tension, a lot of questions. They need a lot of knowledge. I think the greatest strength of the medical home is that it provides a support network, a medical support network for the needs of your child, so that you can rest easy that medical decisions will be made; that you have a medical advocate for your child. You also have somebody who's going to coordinate all the medical care, and it takes a huge burden off the shoulders of the family in that regard. And it also kind of gives you one-stop shopping in terms of you only have one place that you have to contact, you know, to really coordinate and get all the information that you need and the support that you need for your child's care. Imagine if there if there is no medical home, and a parent is now having to call him or herself, you know, the GI person and the OT and the PT and making all these reports and they have to sort through it you know all by themselves. So the medical home is, I think, a tremendous relief for the families. I wouldn't say I have a lot of concerns. But there are areas that I think need to be improved, and I think those are pretty much the areas that we all need to improve on, no matter what profession or business we're in. There are communication breakdowns that that go on, you know. There are times, I think, in care when you're not getting an explanation that is clear enough to you. There are also difficulties in maneuvering between getting the care you want, and getting it covered by insurance. And in our case, there have been many times when Andrew needed some very special kind of care, and at first the insurance company would not cover it or would not provide it. And then, you know we down the road of another three to six months of having to file forms and advocate to get him covered. And I have to say that with the help of the medical home, we've been able to achieve all those levels of care that we needed. But I think the biggest thing and the most difficult thing about the medical home is coordinating all of the communications that come in. I don't know any way that I can really describe this, but if you look at just the communications that are required to manage Andrew's care on any given day, there must be a dozen or more people who are actively working on Team Andrew. And all of those people need to communicate with each other and it can get pretty complicated to try to make sure that there's no breakdowns. But that's the one thing I think that we all need to figure out how to improve. And that's to make sure that communications are coming in and are clear and are distributed throughout.

Faye Well, that's really good advice, Ken. Now Dawn, I'd like to know nationally what percent of children with special health care needs have medical homes, and does it vary by state and are there any national original goals for helping more children access medical homes?

Dawn Well, it's difficult to actually know exactly how many children have or don't have medical homes. There are lots of different attempts to try to measure that, and it depends on whether you want to look at the half the glass half full or half empty. But one statement that I read recently shows that a little over half of children with special health care needs are without a place to go for regular, routine primary care. There's also another answer to your question. I've read about 20 percent of the population is officially identified as being children who have special health care needs. But that really gets at the definition of what is a special health care need, because the national definition that the Maternal And Child Health Bureau has come up with actually includes children who require care above and beyond. But also children who are at risk for those conditions; and so that really opens it up a lot broader. I really feel that that number of 20 percent is really an under-estimate without a doubt. And the other thing to throw in there is, there's a lot of immigrant families and undocumented children in this country who have special health care needs and those numbers are certainly not included in these published data. So I think it's a very difficult question to answer with regard to a strict number who have or don't have a medical home. And it does vary by state. And it does feed into the goals of national organizations such as the Maternal And Child Health Bureau and the American Academy Of Pediatrics. Both of these organizations are committed to 100 percent of children having a medical home. The Maternal And Child Health Bureau is specifically focusing on children with Special health care needs. But the American Academy Of Pediatrics really wants all children to have medical homes. So the goal is very big, but it's one not acceptable to be anything less than that.

Faye How are the state Title V Children with Special Health Care Needs Programs getting involved in the medical home concept?

Dawn Well, it's great now because at the federal level the Maternal And Child Health Bureau has written standards in their core performance measures documenting which children in each state with special health care needs have a medical home. So now every Title V agency in every state has to report on those numbers every year to the federal agencies; and they now have to figure out a way to measure this and try to get accurate numbers. So that's been a real step in the right direction because it's it's required of the states to look at how they do get that information, and more importantly, what kind of a job each state is doing. I can give you an example of Illinois, because I've recently become involved with the Title V program here with an initiative that speaks to this issue very well. The current Division of Specialized Care for Children, up till now has required the primary physician in their program to be the specialist; and not the general pediatrician or not the primary care physician. So because of this medical home model; and because of this whole initiative to move things in this direction, they are changing their whole program now, and are really going to focus and target on the primary care physicians being the primary center of coordinating all of this and working with the specialist and making referrals. So for the state of Illinois, this is actually a big deal, and it's a big step in the right direction. And that is happening as we speak.

Faye Well that's wonderful.

Dawn Yes.

Faye Now another question for you, are there insurance companies that require children with special health care needs who are in their plan to have a medical home?

Dawn Not that I'm aware of.

Faye And how do medical home services get paid for? Can doctors bill insurance for it?

Dawn Well, you say it like it's just a single service, and that's part of the problem. There are all these different codes and it's alphabet soup really. There's all these CPT codes and ICD9 codes, and coding in general is definitely a headache for offices, trying to make sure that they're not over -billing or under -billing, and trying to make sure they get adequately reimbursed. Then, when you're seeing a child with special health care needs, it also gets important to use the correct coding because there has been some movement now to try to get physicians reimbursed for time on the telephone. For example, there's a lot of time on the phone talking to different people in the community about a specific child and developing care plans and those kinds of things have been very difficult to establish a code for, and bill for, and get reimbursed for, and it looks like things are starting to improve in that direction, although there's still a lot of work that needs to be done.

Faye You know I remember now, when my daughter was very little. She was seeing a lot of specialists and she had to get all kinds of medical reports for school. Some of them would just say bring us the form and we'll fill it out, and other doctors will say if you want something filled out for school, you want a letter, it's 25 dollars a page. And I was surprised, and of course I didn't know anything about the medical home or that this was a topic of discussion at the time. I didn't get a lot of advice about it.

Dawn Right.

Faye What do you think are some future directions for the medical home concept?

Dawn Well, I know that, in general, the education of primary care physicians and pediatric health care professionals really needs to continue to be a priority. It's really something that's key and critical to this whole process an a lot of that education comes from the families themselves. I have learned more about providing care to children with special health care needs from the family members of my patients who come to the clinic. That's really been the biggest resource for me. And I think that that's pivotal, but I also think we can improve on that. It's not the family's job necessarily to be my source of information. I really think that the education of physicians is really important. But even to get at the issue earlier, would be to really change the way that primary care physicians are trained. I think that it goes back to the medical school and residency level where focus is not just on learning the dose of medications and how to work in an intensive care unit. But we really need to get more at those non-medical, but unbelievably important, skills of accessing resources in your community and working with the schools and working with child care and working with all these other agencies that we really don't know prior to having a family and a child who requires these services, is really a sort of trial by fire. There's really not any formal way to train people how to get good at that and I think that that's really that that's missing. And people are starting to recognize that now and I think that in the future it's only going to get better and better. But for me, and I would like to think that it wasn't that long ago that I was in medical school, there was no emphasis at all and I had a great education. There was no emphasis at all on non-medical components of being a good primary care pediatrician.

Faye We'll be looking forward to hearing more from you about that. Ken, I'd like to know if you and your family are involved with any parent organizations, support groups or community activities where you share information about the medical home concept with other families?

Ken Well, you know, like most families that have a child with some kind of medical or special need, we're very involved with groups that talk about that particular disease. Familial dysautonomia, which is Andrew’s condition you know, has actually two foundations that are working on trying to find a cure as well as to provide support for families; and I've been a member of the board of both of those organizations; the Dysautonomia Foundation and then there's another one called FD Hope. I'm also a commissioner on the Commission for Residents with Disabilities in the Village of Buffalo Grove. They're, frankly, getting tired of me talking about these kinds of issues around the table. But I've been trying to be an ardent advocate about this, to try to make sure that every every child or young adult in our Village is aware of the need for a medical home. I'm also very involved with other not- for- profit groups, such as the Make A Wish Foundation, which puts me in touch with a lot of people in the medical community where I have an opportunity to talk about the medical home concept.

Faye Well that's wonderful, Ken. I hope that you'll also send me the links for all those organizations and we'll post them on the resource section so families and professionals all over the country will be able to connect.

Ken Great.

Faye Do you have some advice for other families who have children with special health care needs about the medical home concept for their children?

Ken Sure. I think you know first and foremost, what I would tell families is you cannot be passive. When you have a child with special needs, you need to become an advocate for your child. I see oftentimes families who feel like if they just lay back and let the medical community do whatever it needs to do, that that will be enough. And it really isn't. When you are given the responsibility and the gift, really, of raising a special needs child, you have to take that responsibility seriously and you need to learn about the disease. You need to learn about the needs. You need to become an active participant and advocate on behalf of your child. And that's kind of first. Then once you've made that commitment and you understand your role and your changing role as a parent, I think it's important then to make sure that you interface with a medical home. You know interview different practices. Find out which pediatric practice is going to provide you with the kind of service and the kind of support network that you're going to need. Once you've identified a good practice, you need to organize your thoughts and you need to organize your needs. As I said before, kind of separate the issues into what are really medical you know issues that need to be addressed and coordinated; and what are more of the day- to- day life kinds of medical issues?

Don't be afraid to ask for support. That's part of what the pediatrician and the pediatric practice is there for. Don't be afraid to call up the pediatrician and say I have a lot of issues that I want to discuss with you. I want to make a more extensive appointment with you either after hours or on a weekend and sit down and really map out a plan. Ann and I meet with our pediatrician two to three times per year for an hour or two and just sit down and try to update where Andrew is and where he needs to go. So, I guess my advice is become active. Understand that you as a parent as a family have a very active role in this as well and ask for the support that you need.

Faye Okay and thank you so much, Ken. And Dawn, what advice do you have for pediatricians about the medical home concept for children with special health care needs?

Dawn Well, I would just like to say that that the American Academy of Pediatrics has really made it clear that our mandate as pediatricians is to be that medical home and to not take insurance status into consideration with regard to the quality of care that you deliver or just whether or not you deliver the care. So I think it's just incredibly important that all pediatricians strive to achieve whatever level of medical home they feel they can possibly handle and if they need help, there's now a lot of established resources out there to assist pediatricians on every level and to not be afraid to ask for help or to admit that there's things that we’re missing in our training that we need help with. And then secondly I would just like to add that the families are key to this whole thing. And what Ken said earlier, nobody knows that child better than the parent and I think that it's really important that pediatricians respect that and work with the families and really learn from each other about what can be done to do what's best for this child.

Faye I want to thank you both very much for sharing your knowledge and your expertise. We learned a lot today and now we know a lot more about the medical home for children with special health care needs. We'll have a lot of helpful resources and we will continue to communicate on this topic.

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End of interview.

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