Nutrition, Insurance, and Children with Special Health Care Needs
Originally broadcast: February 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 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 web site. Today's webcast is about nutritional needs for children who have special health care needs and we're very fortunate to have two experienced knowledgeable speakers today. One is Ann Harris from California. She is the nutrition training director at the University of Southern California University Affiliated Program and we have Paula Connelly who is a parent of a young man with a rare syndrome that has many nutritional complications, and she is from Iowa. And I'm really glad that you could both join us today.
Ann: Thank you, Faye.
Paula: Thanks.
Faye: And to start off, I'd like to ask Ann, do children with special health care needs have special needs that are related to their nutrition? And if so, what are they?
Ann: Yes many children with special health care needs do have nutrition issues. It really varies by the particular disability, but it depends on many factors, including birth factors up through adult issues as well.
Faye: And are there any types of special needs that are more likely to also have special nutrition needs?
Ann: Well the main issue that really relates to nutrition is, of course, feedings. So any child who's having feeding issues could potentially have nutrition problems. So that as a general category any child who's having difficulty feeding would you would want to be concerned about their nutritional status. But there's also several disabilities; chromosomal disorders or metabolic disorders that have inherent nutritional problems.
Faye: Now Ann, when you say feeding issues, what exactly does that mean?
Ann: Well, it could be children who have problems sucking even from birth, swallowing, children who have maybe did fine on bottle feedings but later have difficulty when it's time to learn to eat solid foods, either learning spoon feeding or chewing. And then it can also have be children who have issues around feeding behaviors. They either don't like foods or have different sensory problems. The taste of food is different for them or the again their perception of texture is different. So it can really, there's a wide range of problems from what we call physical mechanical oral motor kinds of issues up through behavioral food refusals.
Faye: I see and who are the professionals that are involved in providing nutrition services to children with special health care needs and what does each one of them do?
Ann: Well usually, at least in the setting where I work, which is a training program for professionals working with children with disabilities, we have a range of professionals involved in helping children with feeding issues and we call it our feeding team, our feeding development clinic. And on our team we have a nutritionist who is a registered dietician, and just to clarify the difference between those. A registered dietician does have credentials that include academic preparation, clinical training, and national credentials, an exam that they have to take, whereas the nutritionist is an unprotected name so that anybody could call themselves a nutritionist who has ideas about food and nutrition. But for children with special health care needs, there are trained registered dieticians who have experience working with children and families and on these teams. So the dietician is one member of our feeding team. We also have an occupational therapist who actually assesses and makes recommendations for oral motor issues. A speech therapist or a physical therapist could also look at oral motor issues and each discipline comes with a unique perspective to those oral motor functioning issues. But you need somebody on your team to look at oral motor issues. Also, we have a pediatrician to look at the medical issues that might be influencing the feeding problems. Again you have this role done by a nurse or anybody with medical training that has expertise working with children with feeding problems. And we also have a psychologist who assesses the behavioral component to that feeding issues. So, those again the psychologist is our particular person right now looking at behaviors. There are many other people that specialize in behavior, social workers or family therapists that could also look at those feeding issues. So a feeding team wants to look at all of the nutritional, the medical, the oral motor and the behavioral issues that would help a family and work with their child to improve feeding.
Faye: Now, how can parents tell if their child needs to be seen by a feeding team and how would they be able to find one?
Ann: Well, there are feeding teams in many different locations. Some are community based. Some are in tertiary care like hospital settings. Some are in special clinics like ours that serve children with special needs exclusively. But one of the things for looking at trying to find a feeding team is whether or not the issues really are what we call complex or need to have these different professionals. In other words, if a child can eat just fine, but is having problems growing, you might first consult the with your physician who might refer you to a registered dietician. But if there are issues around getting enough food in or that there may be problems with again feeding behaviors, then you might want to have more than one professional or a feeding team look at the child. And it is hard to find those. It's basically a process of keeping on questioning accessing resources like the UAP's. That's the university affiliated programs that are available in every state. Many of them do have feeding teams and those you can find through the network of UAP's or through the Maternal and Child Health Bureau. Again some hospitals have feeding teams. Sometimes they're located in the occupational therapy department, but they've pulled together people from other departments to help them look at interdisciplinary issues. Some early intervention programs have feeding teams. And some of the developmental services from state departments also fund or sponsor feeding teams.
Faye: Now, before we go on to ask Paula about some of her experiences, I would like to let everyone listening to the webcast know that we have a resource section, which is like a bibliography, and we will have links there so you can find the University Affiliated Program which the federal government funds in every state for research policy and training and services to children with developmental disabilities. We will have links to other organizations and resources that have lots of information about nutrition for children with special needs.
Now Paula, I understand that your son has a very rare syndrome and he has in addition to multiple disabilities, he has some specific issues related to nutrition and I'd like you to please tell us a little bit about that and how you found out that his condition includes special needs related to nutrition.
Paula: Certainly. Aaron was approximately three and a half months old and I had had some concerns at birth just overall about Aaron's condition and some things that I didn't feel--Aaron was my fourth child--was particularly typical of a newborn. It was at that time basically I asked to have a conference with his pediatrician and just went in and shared my concerns. As a result of that conference, we were referred to a neurologist and it was just about at that time that Aaron started to show some delays. He was starting to miss milestones. At that point, he was seven pounds when he was born. And at that point, he was 11 pounds. I was breast feeding him. And as a result of our consultation that we started with the specialists, I went back to my early intervention team who did we did have a registered dietician on board and I began to work with her. Breast feeding was very important to me and there was disagreement among the specialists that were becoming part of Aaron's team as to whether or not I should continue breast feeding. At that point, we came up with a compromise that everybody accepted that I would continue breast feeding with a formula supplement for Aaron.
Faye: Okay, now let me ask you something because I think everybody nowadays knows that breast feeding is considered to be the best nutrition for babies. Why were the professionals in disagreement about this?
Paula: Mainly about how much his weight gain was very very slow. There were questions about how we were going to measure the amount of formula that he was getting and they wanted a more specific precise way of saying okay he took so many ounces of formula which translates to so many calories. And that was mainly the concern and when we were able to reach a compromise where we were showing that he was getting those calories through the supplement, then everyone agreed that I could go ahead and continue to breast feed him.
Faye: Okay, and did you use the supplement in a bottle later or while you were nursing?
Paula: While I was nursing.
Faye: Okay could you tell a little bit about that please?
Paula: Sure. Essentially, I would nurse him first and then we would feed him by bottle after he had nursed a specific number of ounces and we also have supplemented the calorie content of that formula using various food supplements that the nutritionist had suggested. For instance, we mixed things like carnation instant breakfast in with his formula things like that so that he could get the most calorie intake that he could possibly have available to him was fed to him.
Faye: Paula, another question that I have for you, it sounded like you were very pro-active in getting early services for your son. Did your health insurance at the time cover these services of the registered dietician and the feeding team and the formula?
Paula: At that point and time Aaron's father had been receiving professional group insurance and laws were different then and his group was bought out and so in order to when they came back to us and in order to insure Aaron, we could not afford the premium. It was four times as much as we had been paying and so at that point, we had to make the decision to do something differently, and we sought out our state's home and community based waiver program. And through that, he qualified for Medicaid. And by using Medicaid, we were able to access WIC as Aaron at that point and time was under five years of age.
Faye: What is WIC?
Paula: WIC is a program that is supported by the government federal government. It is for children birth to five. And they provide all sorts of nutritional counseling help as well as a lot of programs for instance will give families vouchers to purchase fresh vegetables in the summertime, that sort of thing. There are certain foods such as cereals, juices, things like that, that are available through WIC and also in our case, WIC also covered the cost of Aaron's formula, which was Pediasure with fiber. It's a very expensive formula. Also in our state, if you qualify for home and community-based waiver, you automatically qualify for WIC as well. I know that's not the case in all states.
Faye: And again a note to all of the listeners. We will have resources posted for you so you can find out about WIC programs in your own state and also whether or not your state has community home and community based waivers and how to get more information about it. And we do want to remind everybody that these services are not identical in every single state.
So your son was not on the family health insurance anymore. Is that what you're saying?
Paula: That is correct.
Faye: Okay. It also sounds like a very complicated process. Who helped you with this?
Paula: I would say that the occupational therapists through early intervention was a wonderful source of information. So was the registered dietician and then, of course, once we were involved with the WIC program, I also got a lot of helpful information. We did attempt at that time to transition Aaron from specific baby foods very similar to what you would a typical child and we were trying to introduce foods and they were just very helpful on giving me advice as to how to make sure everything that he was eating. Again we were concerned about calorie intake. Everything that he was eating I was able to maximize the calorie intake.
Faye: Okay, but none of this was supported by your health insurance. It was all from the government program. Is that correct?
Paula: Exactly. That's correct.
Faye: Now Ann, can you tell us a little bit more about nutrition services being covered by early intervention legislation? What does this mean and how can families access the services? Cause I know I have heard that nutrition services are the least accessed service of all 16 early intervention services. Could you tell us a little more about that?
Ann: Yes. Unfortunately, it's sad to hear you say that, but unfortunately I do believe it. Again, nutrition is one of the stipulated services for early intervention and it makes sense since children from birth to three nutrition is a large part of what they need and if they're not getting it, they need help getting it. But it really varies depending on how states have implemented their early intervention programs. And for instance in Hawaii, they have state level early intervention nutritionists and nutrition services are offered to every child in early intervention programs. In California, it's almost the complete opposite where I don't know the single early intervention program that employs a nutritionist and certainly not available on a state planning level either. The early intervention programs are contracted sort of third and from the state down to the community level. but essentially, you can get the services if you know what to ask for. And it is it is a designated or stipulated service that is available to parents. You just need to know that it is there and that one way or another, it needs to be provided. If the early intervention program per se, like the center based or the home based program says we don't have those services, then you need to go back to whoever is funding the early intervention program and say my child needs nutrition services. And usually you can work with a physician or your care coordinator to try to locate where and how they would provide them since they are required to do that. But they will probably not offer that service unless like I said it's a policy of the state like it is in Hawaii.
Faye: I see, and are there any other government agencies who are involved in providing nutrition services to children with special health care needs?
Ann: Well, certainly and WIC, as Paula described, is one of them. However, WIC is not a program that is designed for children with special needs. And again it varies depending on the state or local program which programs provides what kinds of services to children with special needs. So WIC, in general is for pregnant women and children under the age of five and some programs do have nutritionists that are trained to help with more specific nutritional needs. Others will refer out to other health care providers. And Medicaid is one of the services that would usually pay for those services. So, Medicaid will pay for medical nutrition therapy which is technically getting a registered dietician to provide specific services for unidentified conditions. So it's it's not general information it would be very specific to a child with either a diagnosis or something general like failure to thrive which is the lack of growth at an early age. They also some Title V programs in states also provide direct services or will will cover them with payments to children who are enrolled in those and qualify for those Title V services.
Faye: And do these programs have income eligibility?
Ann: Medicaid--yes. Early Intervention--no and Title V--it depends again on how the state has chosen to use those funds.
Faye: And what about WIC?
Ann: WIC, yes, has an income eligibility and it does very little but generally it's 180 percent of the federal poverty level. So it does cover more children than Medicaid.
Paula: And Ann, I will say that some of the home and community based waiver programs will automatically waive the income requirement that's for WIC.
Ann: That's good to hear...
Paula: So, again it just depends ...
Ann: On your state...
Paula: On your state, and how your state is implementing those programs.
Ann: Well, and yes it's also true that Title V and and Medicaidsometimes have a continuum of care. Let's put it that way for different income levels, which can vary from, state to state.
Faye: Now Ann, does health insurance pay for special formulas and for medical nutrition therapy, and how can families find out about this?
Ann: Well that's a big question because and we get it a lot. The it really varies and we've done some local and state-wide needs assessment to look at what services are covered by different health insurance plans. And it's no set answer that covers all of them. Some programs are very comprehensive and do cover nutrition services. Others will only cover nutrition of services affiliated or associated with certain diagnoses like diabetes or something where it's written into the care protocols for those HMO's that nutrition services need to be provided so that children who don't have a specific diagnosis may not have it covered by their health insurance company. And there are unfortunately a group of people sort of people in the middle who many of the employer based health plans do not cover the special formulas. And so it becomes problematic if your child needs special formula for a long period of time because they are expensive.
Faye: What do you recommend parents do if their child needs a special formula but their insurance won't cover it?
Ann: Right. Well there are some ways, several ways to approach it. If all potential vending sources have been exhausted, we do, for instance in California, have a there are regional centers which is funded by the Developmental Services System and that they will fund formulas. But again, they don't offer it as a service. But if you keep pushing and saying there's no other source of payment, sometimes they will they are the last resort in here. So that's one source. If there are no other publicly funded sources available, then often what we do is try and find a cheaper way to do it. In other words, working with a dietician you can sometimes come up with maybe a home concoction that might be roughly equivalent to some of the special formulas. It doesn't always work, but we do have some formulas that are cheaper. There are some generic brand name formulas. So we might look at that angle. There also are some formula banks and resource groups between parents who you might they might have unexpired formula that they could donate to a bank and then might be able to use that as a resource. Again, that's not a long-term solution, but temporarily while you're waiting for funding or you are trying to try a formula and you don't want to invest for several months. Sometimes that can be a short-term relief.
Faye: And is there an information resource that you'll be able to share with us so people can find out about formula banks?
Ann: Well some those are really through the parent groups and I don't have certainly national contact. I have, I think the best way would be to search through family information sources, Family Voices or there's I don't have a specific number. It really would depend on your local area.
Faye: Paula, I'm going to ask you to address this question because you are also a Family Voices coordinator and you're very active in working with other families in your state and you know I can share with you from my own daughter who has cerebral palsy and has always had trouble gaining weight. She's in what we call the Carnation Instant Breakfast Club and that's for people who don't have insurance coverage to have special formula, but, Paula please tell us about your experiences working with other families who have insurance that does not cover the special formula for their kids.
Paula: Yes. Besides my volunteer work as the state coordinator for Family Voices, I also work as a community specialist within a university Title V program which is the Child Health program. And so I do work with a lot of families trying to figure out ways to resource formula and things. I echo with Ann's basic advice. We have been able to do everything from get samples from different companies, especially if a child is having trouble digesting certain formulas and we're not sure a formula is going to work. We've often been able to get a temporary amount of formulas so that it could be tried. We also there is support available often for families if they would like to file an appeal with their insurance company and pursue that avenue. There are resources to help you with that. There are certain things when you go through a grievance procedure with an insurance company, certain information that is essential to provide and you can certainly find people who have experience with that. I think Family Voices is probably the best route to go through and we can post a link to their website which in return there are phone numbers for each of the state coordinators within those states. Family Voices is a network of families and professionals that speak out on behalf of children who have special health care needs and our part in the system is that we all have a great concern and a great deal of experience with children who have have special health care needs. And if we don't know the answer, we'll find someone who does. And at that point, you really are looking for you know the networking process of finding out who it is that has the answers for you if something doesn't work and what do you do next. And that's where a family type organization such as Family Voices can be very helpful.
Faye: I appreciate your sharing that. You know I'm also a volunteer state coordinator of Family Voices in Illinois and we have a link to the Family Voices web site on our web site. The national toll-free number is 888-835-5669. It's a tremendous resource for finding answers and resources for all types of special health care needs and we welcome families and professionals to contact Family Voices.
Now another question for Ann. What is parental nutrition and is this covered by health insurance?
Ann: Well parental nutrition is nutrition that would enter through routes that are not through the gut or normal stomach through intestines route which is called enteronutrition.
Parenteral nutrition would come through either an I.V. or a direct central line feedings and it's quite it's usually done in a hospital although it can be done with home medical care. And it usually is covered because it's considered for most children anyway, it would be a short-term therapy.
Faye: And health insurance you say usually covers that.
Ann:It would cover it if it were part of the health yes the condition the child was hospitalized for or a part of the home health care.
Faye: All right. Can you tell us cause we also hear about an NG tube and a G tube and a J tube.
Ann: Right.
Faye: What is that?
Ann: An NG tube is a nasogastric tube and so it's a small piece of gastric tubing that's inserted through the nose and goes into the stomach. And that again is considered a short-term feeding therapy and it could last from a couple of days to a couple of months. The tube would be pulled out and reinserted either with each feeding or once a day. So again temporarily if the child's had surgery of if somebody is having a problem that is short-term and will be corrected, you can use NG feedings. The gastrostromy tube and the J tube or J jejunostomy tube are both longer term feedings. They do go into the gut so it would be considered enteronutrition. And the gastrostomy is a tube that goes from the skin through they call it a surface device, through to the stomach. And food or formula is put in liquid form through the tube and into the stomach and then goes through the normal digestion process.
A jejunostomy tube or a J tube is lower in the gut and so the food or formula that goes through the tube is usually formula, needs to be in a more digested state because you're basically bypassing the stomach.
Faye: Do many children with special health care needs need this type of feeding help?
Ann: Yes, quite a few do. And in the 20 or so years I've been in this field, the real difference that I'm seeing is when in the in the late 70's, the tube feedings were rare and now they're becoming much more common and it is a real godsend for many children to be able to have these tube feedings to get them through either several years or even children have them for life who wouldn't otherwise be able to be nourished. So, there is a change in philosophy but we do see many children with those interventions. But it's not something for everybody. It doesn't solve all the problems.
Faye: Okay, now Paula does your son have tube feeding? Could you tell us about that?
Paula: Certainly. Aaron does have a G tube. He's had it for approximately nine years now. And as Ann said, it didn't totally solve all his nutrition problems. What it did address and I'm very very glad we made the decision, I felt as a member of Aaron's nutrition team that we had exhausted all our options that we had at that time for other interventions that were probably less invasive than the feeding tube. So at that point emotionally, I had come to the conclusion that we did need to take the next step which was the G tube. So for us just from the emotional aspect, just from the comfort level I gained knowing that Aaron does consume all the nutrition he needs on a daily basis, I think it is apparent. That was probably my most nagging fear was how do I make sure that Aaron is getting all the nutrition he needs to get on a daily basis? So, from that perspective the G tube has been a success for us. It's been a very healthy alternative. Again, we didn't solve a lot of the reflux problems that have persisted with Aaron and we've tried several different ways to address those and we go through periods of time where we're pretty successful and other periods of time where I notice that he will go through periods where he does suffer from more discomfort from reflux and things than other times.
Faye: Now how do you take care of his special nutrition needs when he goes to school or when he goes out like to a birthday party?
Paula: Okay, at school Aaron goes to his neighborhood school. He is accompanied by a one on one aid and under our school district policy, I was able to train both his school nurse and his one on one aid on feeding Aaron. His school nurse is not at school a full five days. Another school shares her, which is probably pretty common. And so his one on one aid is responsible during the day for his feeding needs. As far as other social activities, including you know family parties, birthday parties, even at the dinner table, I do follow the common theories that Aaron needs to learn to socially eat around be around other people who are eating and he sits with us for instance at the family dinner table and we give him things that he likes. Aaron does have some of the texture problems Ann mentioned could be common with kids with special needs. Certain textures he does not like, so we're sensitive to those. And he will never be at the point where all his nutrition needs will be met or can be met by normal food intake. In Aaron's case, we've come to the conclusion the way he absorbs food and because of stomach emptying problems and just some physical problems caused by his syndrome, he won't fully be able to take in enough nutrition to sustain him. And so I'm very pro advocate of having him be around food introducing food to him and then letting him more or less set the tone and we follow his directive. I oftentimes what I try to do when I know he has a special occasion coming up that involves food is I try to feed him 45 minutes to an hour before that event and then I just let him then eat with the other children or the other people present. And that's been the best solution. Early on we did have a lot of just emotional problems around food for Aaron. He use to cry a lot and be very grabby. He would try to put things in his mouth and then he'd spit them out and we had some socialization issues definitely around food. And I would say that it took us awhile. It was one of those frustrating experiences that we had to learn to be really patient with him. And he's to the point now that all those behaviors have disappeared and he is much more comfortable around food and he waits his turn. It's not something that he's grabbing at and then crying because for whatever reason he just was not comfortable with the process of eating.
Faye: How do you explain to other children about his feeding tube and about his nutrition needs? I'm sure they must ask questions.
Paula: They do and we have always been as honest as we can with the children and explain in as simple terms as we can that Aaron cannot get all the nutrition he needs by eating food through his mouth. So, he has this tube and we show the children the tube and explain that he receives formula through that tube and the formula is what keeps him healthy and gives him the nutrition he does a day and the kids, of course, you know were curious and we answered the questions as they were asked. But at his school now since he's in the fourth grade now, this definitely everybody's pretty familiar and the kids are use to seeing him be fed so it isn't a it isn't something unusual.
Faye: Does he get fed in the cafeteria when the other children have lunch?
Paula: No, he does not. He gets fed in the nurse's office and that was more a decision less because of the social implications, but just physically there wasn't any other way to do it and so he does eat in the nurse's office but the nurse's office is on the way to the cafeteria and they leave the door open and he has a whole social process that they go through on their way to lunch. Everybody stops by and says hi to Aaron and things. But he does participate in snacks and those sort of activities that kids sometimes get involved with in school you know the holiday parties, those sorts of things.
Faye: Well, that's wonderful. I have another question. This is about the school lunch program, which is from the Department of Agriculture. How do they accommodate children with special health care needs and what is the role of the child's IEP, their individualized education plan, and helping them to access this?
Ann: Well, let me give some outlines and then maybe Paula could tell me her experience, but tell us her experience. The school lunch program basically is a national program and it does allow for meeting the needs of children with special health care needs in whatever way they can to allow participation. Now in order to get special accommodation in the school lunch program, you usually do need to have something written into the education plan and often an additional form as well so that there's a in California and I know in some other states, there's an additional form that needs to be submitted for like a meal modification. But the program is required to accommodate special needs. It could be blenderizing the food or providing low-fat milk alternative or non-fat milk alternative. Those kinds of accommodations are more common. In terms of providing different actually a different food, the degree of accommodation really varies by the school district. But it is an option for families to want to access that service at school, but schools are quite variable in how open they are to making those accommodations. But it's definitely something that should be requested.
Faye: And does it cost the lunch cost more if the child needs accommodations?
Ann: It should not cost any more. It should not cost any more.
Faye: And what would be the best way for families to find out more about this?
Ann: Well, there are several resources. Again calling your school district may draw a blank but if you can get to the food service program in your school's district, they should know about again which forms are needed to write an accommodation and how to get those forms. Again going to the food service provider, many school districts do have registered dieticians or are required to at least the district planning level if not at the local level.
And some state programs have manuals and resources available at the state level for how schools are suppose to accommodate what the law says and what kinds of accommodations are required so that most states will have policies in place to do this. Again it's just finding the person who says yes I know about this policy and I can help you meet your needs.
Paula: Other good resources for parents if their child is working with an occupational therapist or even a physical therapist. Oftentimes, although they might not specifically have information directly, they can often be a good advocate or just someone that could help support you approaching school's food programs. Also, I would recommend parents try their school nurse. There are also good support people that could help you figure out how to access and support those conversations that you would have with the people that you need to discuss the accommodations and make the accommodations with. Our school district we've been very blessed. They children I know of who are utilizing and taking advantage of having food especially prepared have not run into any problems.
Again as Ann said, it is important to make sure that that is a part of an IEP simply because of and we should say that an IEP is the student's individual education plan, and that tool I look upon that as sort of the direction quite frankly of what needs to occur during the day with your child and just like you would leave instructions with anyone else who is doing the care for your child, I think you need to look at your IEP oftentimes in the same perspective. This is where you know the direction is given and everybody knows because it is in writing what exactly does your children child requires and how they're going to carry out those requirements so it's just a good sense place to start and make sure that everyone understands your child's needs and also to have a plan in place and how they're going to follow through making sure that your child gets those services.
Faye: Okay, now we're moving toward the end of our webcast. And one thing that I'd like to summarize is that it seems from the information you've both been sharing that there are more sources of support for children who have special nutrition needs in government funding funded programs than through private health insurance. Is that correct?
Ann: This is Ann. Yes in general I would say yes but it's not saying that those same types of services they may not be funded through the same procedures but the policies would apply to people with other health insurance.
Faye: Okay now I'd like to ask you both a general question and then a specific question. To Paula, what are resources, publications or organizations or other sources of information that you find to be the most helpful for families whose children have special needs related to their nutrition?
Paula: Well, first off, I would definitely seek out a support group. I would say looking back all the issues we face, probably the most emotional issue for me was the feeding issues and I have found that to be a common bond with other parents I've spoken with. It becomes a major focus. It's very emotional to realize that you are trying to do the right thing. You're trying to provide the nutrition your child needs but yet for whatever reason, and sometimes you're slow to identify what reason that is, is not working for your child. And early on I think it's simply you know I'm mom. This should be an easy process. I feed my child. He should be gaining weight. And when that doesn't happen, that can be very emotional. I remember times going coming home from weight checks healthy weight checks and being totally in tears because for whatever reason Aaron had not gained as much weight as I had hoped. And we did spend a lot of time really focused on those eating issues. So I would recommend you know looking into getting together with other parents and the people that are helping you either through early access, school nurses, anybody, just ask, do you know do you know of someone who has whose child has similar eating issues similar problems and ask you know let people know that you're willing to have your phone number exchanged. There are matters of confidentiality, but those can be gotten around if you tell someone that you're willing to have your name and number exchanged with another parent, then we can share those names and help get people connected. I think that's a good support system. It's also important to share those concerns with health professionals that you work with. Let them know that you're not--how emotional or that this is an emotional issue for you. Make sure you're doing the things that make you feel good and are helping you help your child. Again I think we briefly touched for me, you know the breast feeding was an important issue and professionals can't guess what's on your mind and I was the one who had to say this is really important that I do this. And if you, if the first professional you share that kind of information with if they don't seem particularly sensitive to it, then I urge that you tell someone else and see if you can find someone who is sensitive and sympathetic with those needs. Sometimes it takes going to one or two people before you find the person who will say I heard what you said and I'm willing to work with you to find an area that's comfortable for both of us.
Faye: Well, thank you for sharing that with us, Paula. I think that's really good advice. Ann.
Ann: Yes, I'd just like to build on what Paula said and continue it. I think even starting with the breast feeding, in terms of breast feeding children with special needs, it really again depends on the feeding ability of the child and what the special need is. But, there are professionals that do specialize in this. Some of them are lactation experts. Some of them you could find for instance through a craniofacial clinic because a lot of children born with cleft lip and palate parents want or mothers want to breast feed and they do have special techniques to help. So that would be one professional resource that you might want to access or again other lactation support groups either parent to parent or professional.
But to continue on from there, there are other resources. We talked about feeding teams and if it comes to needing a feeding team, those relationships can continue for years and can lead to other resources and supports. We have small ongoing sort of parent professional support group for children with feeding problems and their parents. We also access our local mental health services to help with ongoing issues that surround feeding and feeding children with special needs. Then there are additional many professional resources in this area and again the University Affiliated Programs are often a good source of information. I did send you a resource list that includes a range of written resources from we broke them down into levels so it goes from parent to fairly highly trained professionals. But those are available to anybody who wants to look at them and there's some ongoing newsletters and there what I haven't given you and I'll try to make available to you are some lists of web site addresses that we are coming up with that have nutrition for children with special needs as the focus or have additional resource materials.
Faye: Well, that would be wonderful and the resource lists that you sent to me is on the web site and when people come to visit our website, they can also access all of these wonderful resources.
I want to thank you both very much. This has been a very informative discussion. You have a lot of valuable information to share with us about nutrition for children with special health care needs.
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End of interview.