Webcast KMCO Archives

Using the Internet for Health and Insurance Information

(Originally broadcast on June 28, 2000)

Hello everyone. We want to welcome you to our Webcast families on the Internet, one of a continuing series for the KMCO Webcasts that are part of the Quality Community Managed Care Project at University of Illinois at Chicago School of Public Health Center for the Advancement of Distance Education. All of the programs are about important topics related to children with special health care needs and managed care health insurance.

Today we want to welcome two expert speakers, Donna Scherer who is the project coordinator for Website development with the Division of Specialized Care for Children in the state of Illinois and Anita Johnson who is a parent and an active leader in parent organizations in Chicago, Illinois. I'd like Donna and Anita to briefly introduce yourselves to our audience.

Hi, this is Donna Scherer with the Division of Specialized Care for Children. And good morning.

This is Anita Johnson with Family Ties Network as well as Clre Clearing House.

Q. Anita, could you tell us a little bit about your family?

A.Well I'm a Mom of two children. Tommy is nine and Tommy has Downs syndrome. And Tiffany is seven and she's one of our typically developing little girls and they're both in school, unfortunately two separate schools and they are both doing well.

Q. And that's amazing to me that they're so old. I first met Tommy and Tiffany when they were little toddlers. And we've asked both of you to be on the show today because you have a really high level of expertise with computers and the Internet. And this is an important topic that we need to know about, so we ask you to share some of your knowledge with us today. First of all, we hear everybody talking about the Internet. Donna, could you explain to us please in lay persons language exactly what the Internet is?

A. Well Faye the Internet really is just a network of connected computers that allow people to communicate from all over the world and as long as you have a computer, then and it's connected to the Internet, you could essentially communicate with someone in Indonesia or Indiana just as quickly.

Q. How do people get started in accessing the Internet? What do you need to have? What do you need to do?

A. Well there are some equipment needs that have to be met. You obviously you have to have a computer. It has to have the basic features and they are a windows-based operating system. You need the computer needs to have a processor with a certain amount of random access memory, a certain amount of free disk space. Your computer needs to have a modem and, of course, you need to have a monitor with your computer. Then once you have all of the equipment, you need to obtain access to the Internet. And the way you connect to the Internet generally is through a commercial Internet service provider much like most people have heard of America On Line is a is a very well-known Internet service provider. There are also free Internet service providers like Net Zero.net or juno.com that will send you a "cd" to load on your computer and then you can access as long as you have a modem. You can access the Internet for free.

Q. You know Donna you introduced a lot of technological terms that are like a new language for us and I know a short time ago, many of us didn't know these. You mentioned windows, RAM, modem and monitor. Could you explain to us please what each one of those is?

A. They're just components I really am not a technical expert, Faye, but those are just features that your basic computer needs to have in order for you to be able to take advantage of the Internet and the language of the Internet. Windows is the operating system or the main part of your computer that allows you to point your mouse and click on icons. Your processor is the main engine of your computer is the best way I can think of to describe it. And your modem is the piece of equipment that allows you to directly connect via a phone line or a cable connection to the Internet. You have to be able to connect your machine to the network of other machines.

Q. Then what's the monitor?

A. Oh the monitor is the it's like the television screen component that usually comes with if you buy your computer as a package which allows you to see the information.

Q. Okay and I think for most of us when we think of a computer, the picture in our mind is the picture of the monitor. Anita, could you share with us how you got started out in using the computers and accessing the Internet because I know you were one of the first parents that I met who was on line and using the Internet and knew all this language and all the new words and about the equipment. Can you tell us a little bit about that?

A. A lot of it at first, Faye, was a lot of trial and error. And I've always enjoyed working with computers even in the office work place. But once Tommy has come into my life which is a big joy since he's been around, there's always need for additional information. You know having a computer here at home is a lot easier for me seeing that he was so small and in school, it was easier for me than getting up and going to the library when I can get in touch with different companies and different types of resources just by clicking a mouse or using the computer here.

Q. Okay so you have had some previous experience in your work with computers.

A. Just a little bit. Over the years I've gotten a lot better. And when you talk to families about getting started with the Internet, what is the information that you give them at the very beginning. Don't be frightened. Quite a few of my parents are so reluctant to get aboard or even touch a computer. They're afraid they're going to do something wrong and I try to reassure them that it is a lot of trial and error and once you become more familiar with it, then it does become more friendlier to the user as well as visa-versa.

Q. You know I can identify with them. Donna knows about this. Before I came to work here at the university, I had been at some community agencies that didn't have computers. Well I had taken a computer class the last time in 1980 when things were very different. And I was very scared and think if you do something wrong, that you'll blow it up or erase everything. I did go and I took a course at the park district so it did alleviate some of my anxiety.

A. Faye, I'm not a computer programmer by training. I don't have any extensive knowledge on networks or systems. I'm a registered nurse, as you know. So I think we all have started out with quite a bit of hesitation in acclamating ourselves to using this as a resource. And if everybody just remembers that you have to start somewhere and and don't don't let the words just because they're different scare you off. There are so many resources on the web free resources that will help you learn what is the Internet, how can I use it, what kind of equipment I need, that it's so worthwhile to just begin very slowly. And there is a learning curve. I can tell you when I first started working on the Internet, I spend hours and hours.

Q. You do.

A. You have to invest that time. It's like anything else that you learn to do. It takes time to learn a new skill. And ask lots of questions and there's tons of resources.

Q. We want to talk also about some ways for families to learn how to use computers and also to access a computer if they don't have one at home. What would be your suggestions?

A. Well Faye, I would also suggest the library. Most libraries are computer friendly. And from my understanding, you may have to reserve the time in which you may want to use it. But that is one way to get your foot in the doorway and get a taste of it. Many times they also offer some classes on how to use the Internet you know and Internet language. So you know I would urge people to contact their local library and find out if they do offer classes and when the next and they're free. They're generally free to the public.

Q. That's real important to keep in mind. Now we want to talk a little bit about a number of different ways that the Internet can be helpful for families who have children with special needs.

A. Faye, I'd like to take that one for starters. For myself as being a parent, when Tommy was born with Downs Syndrome, you could read a lot of books. But one way the Internet has helped me tremendously is getting on line to find out what other type of newsletters were available which you can subscribe to the majority of the time and there's no fee whatsoever. I can also get in touch with various Downs Syndrome organizations which was, well, it was a big help and plus it was a great additive too to some of the resources that I needed to know. As far as health conditions, a family can get on there to tap into some of the resources regarding specific health issues that they may have for their children. It's also good to find out what other type of support groups may be available in your area. So those are just a few of the ways where I found them to be very beneficial.

Q. Do you continue to use the Internet for your own information as well as for information for other families?

A. Exactly I do.. Tommy's very complicated. So from year to year, particularly the last couple years, he's added on different health issues. So whatever I cannot find out on my own, I would use the Internet to research various hospitals as far as additional resources that may be out there or associations that specialize in that particular disorder. And that is so helpful.

Q. Okay and what about using the Internet to get health insurance information?

A. There are some resources, Faye, on the web, particularly the ones that I know about in particular are Illinois based. But I'm assuming that other states may have similar information available. The Illinois Association of HMO's has a Website that is a wonderful resource where you can go to find out information about your particular if your plan is a health maintenance organization, you can find information out about the health plan that you participate in or you can find out information about other health plans that you may be considering. There is a list of the plans who are the companies that are members in this association. Most of them have Websites and their Websites often tell you about their health plans or plan if they only have one. And it also often gives you information that what we refer to as "frequently asked questions" which is also known as FAQ's in the web language. A lot of sites have FAQ's and that gives companies or organizations a chance to answer the questions that they encounter on a routine basis. So rather than having to pick up the phone and call and deal with getting transferred ten times, often they will put that information on their Website. The other thing that they will often do is provide a list of their network providers so that if you wanted to look up a provider, you could find that information also on their Website. And they also generally have information about claims, processes, and some even have health and wellnes information.

Q. Well you shared some really valuable information with us Donna. I want to let everybody know that in the resource section of our Website for the KMCO project, we have extensive listings of many Websites about health, children with special needs, and insurance. We have listings of Websites of many insurance companies also professional organizations and disability organizations that have sections of insurance information. So please feel free to go take a look at that and you will see that there are very extensive resources out there as well as government agencies that have information about health insurance resources.

A. That's a really good suggestion Faye. I think all of the major health insurance companies all have their own Websites at this time as well as departments of Public Aid or Medicaid agencies within states are also on the Internet and you can find information about them. And sites are getting better about navigation. As a frequent web user, the largest criticism that I can make is about the inability to easily find the information that you are looking for on a Website. Some sites are very very good and others are very very terrible. The one thing that I have found as I have expanded my knowledge about navigating the web is that I often go to a Website and I will look specifically for a "site map." That is a page on the Website where it just usually lists in text the different pages on their site. A Website can have many many pages and usually the text describes what content is on that page. So you can quickly and easily find the information that you are looking for.

Q. Excuse me. Donna, that was good that you brought that up because that was one of the biggest problems that I found to have usually when I go on there trying to narrow it down just to find what I'm looking for. And if you can't tap into it straight away, you're wasting three and four hours.

A. Oh absolutely. There's nothing more frustrating than wanting to find out the information and doing a search and getting sent to Websites and you can't locate what it is that you're looking for.

A.Exactly and putting in key words that special little words that you hope will get you there. It doesn't always work at times. Right and oh, I know I've had that experience. I think everyone has and sometimes you enter in the key words and they give you back 22,000 references or they give you back information on a totally different topic than the one you asked for.

A. Exactly and it's either time consuming to go through all of them or by the time you go through that 25th one, yours is the last one.

Q. Right. I do want to let everyone know that the links the other Websites that are listed on our Website have all been personally checked by the people on our staff here at the Quality Community Managed Care Project. And unless we're totally familiar and comfortable with it, we don't put it up as a resource for people.

A.. That's a good policy. It's very good to know.

Q. I think this brings us to our next question and that is how can people tell if information they find on the Internet is accurate and helpful and this is particularly critical when it's related to children who have special health care needs.

A. Well Faye, There are a few things that you can do to determine how valid and reliable the information you're getting is. The first one, of course, is always to consider the organization that is providing the information to you. If it's a university or a federal government Website, you can be fairly certain that the information has been critically reviewed and is factual and valid. On the other hand, a lot of well meaning individuals and companies creating a Website is not difficult and it's not expensive. So you know I could put up a Website about my personal experience in dealing with multiple sclerosis. And that's exactly what it would be, my personal experience. A lot of times, there are a lot of Websites out there just like that and people who are surfing the web or visiting these kinds of Websites need to keep that in mind. The information may be very pertinent to that person as their experience. So some other things that you can do is look to see is there any indication about the last time the site was updated. Is there any kind of special claims that this site is trying to offer? Are they selling a product or that kind of thing. And is there a contact source? Nothing is more frustrating than visiting a Website that doesn't have the capability for you to communicate with them. Those are just a few that I can think of right off the top of my head. There are some Website like a code of conduct that the help on the net foundation has developed. I can share that information with you and you can make that available on your link if you would like.

Q. Oh that would be great. And Anita could you tell us about the many Websites that are out there for families who have children with special needs and how do you think parents can tell if the information there is accurate and helpful to them. I know they're I looked at many of them and they are all really different.

A. There are quite a few Websites as we all know. There's many that I've run across pertaining to specific issues. One of my favorites is Family Empowerment if I'm not mistaken. It's excellent. There's tons and tons of links out there. There's the Autism Association, they have one. United Cerebral Palsy yes they do have one also. As far as as far as making sure that it's a safe link, double-check your sources. If there's a number you need to call, call the number. Find out. And if there's a newsletter as we referred to before, subscribe to it.

Q. Now Anita, I know you're involved in running a large parent support group and a number of other community-based activities for families. What percent of your time do you think is spent in helping families learn about the Internet, talking to them about the Internet or referring them to the Internet.

A. Anywhere from 25 to 50 percent of the time. We do not have as much free time to actually get to the public library or get to the book store to pick up that book that we wanted. And now with the Internet, you can order books by way of the Internet by way of the computer which is a lot simpler and more convenient for some families. A lot of families are using it to order not only manuals or transcripts from different programs or the Americans With Disabilities Act, but they're also using it to order personal items such as that specialty clothes item that that particular child may need. So therefore, informing the families of the options that are available, more families are definitely willing to take that next step forward and tap into the Internet. So it's very beneficial.

Q. Okay so you see that this is something that's increasing in the lives of most families.

A. Yes Faye it most definitely is.

Q. Okay and Anita are you aware of resources that will help families be able to get their own computer?

A. There is one resource that I that came to my mind when you asked that. And there is a it's a subsidiary of United Cerebral Palsy and it's the Assistive Technology Exchange Network. Now this doesn't this particular program will not bring it into the home per se. But it will allow the families to donate computers to the school setting where their children are. So that's similar to what you're asking but not exactly

A. Faye, there are, depending upon what community you live in. In our community we are getting more news coverage about local philanthropic organizations, churches, advocacy groups that are are bonding together and putting out a call for people to donate their old computers and this organization then rehabilitates it and provides it to families in need along with training. And in our community here in central Illinois, it is it is an effort by a number of church and civic organizations and I imagine that many large communities have similar organizations doing those kinds of things and that more and more moderate type communities will begin to see that develop as well.

Q. Well that's wonderful. We're going to get information about the programs that each of you have mentioned and put them on our resource page and we'll have additional resources there to help people find funding and donation opportunities for computer equipment because I know that that's a growing need is also positive that as computers become more common, the prices are going down.

A. Oh absolutely

A. . Definitely. I'm really glad that you brought this issue up it we do need to acknowledge that families of children with special needs do incur a lot of expenses that other families don't have and we're glad that there are more creative avenues out there to help people also bring computers in the Internet into their life.

A. Oh absolutely, especially since families with special needs children in in the whole probably spend a lot more time at home because their child may be ill more frequently. Their child may be difficult to transport. Just because of a variety of special needs that their child may have. And having a computer in the home and access to the Internet could dramatically increase their ability to get information about the needs their child may have and about available resources and speed up the learning process because in working with families, the one thing that I have learned over the years is that information is the key to effectively locating the resources or services you need or your child needs and it's finding the information that is the most time consuming. So having the capability to begin those kinds of searches in your home where you know you can be with your child or children is a significant improvement.

Q. Well I can really relate to what you're saying about that on a personal level. I know you know my daughter who has special needs now is 18 years old and think of the hours of spending you know five and six or eight hours on the telephone in one day trying to locate resources for her so having the Internet is a big help and every year more and more agency programs are having Websites and are getting connected to computers and government agencies are getting on line now and we're going to talk now about using the Internet for parent to parent support and explaining about what are chat rooms, list serves and news groups. Anita, could you answer that first please?

A. Well let me see what I can do for you. As far as families on the Internet, there are chat rooms which are a small entity that a particular Website may offer for families or for persons in general to connect and exchange questions and comments among themselves. For families who have special needs, this is a good way to connect with another who may have a child or family member who may have some of the same issues that their family may have. It's also a good way to locate additional information. Through the Internet you can also find support groups as we had mentioned earlier which are some of the ways families need to connect to other families as well as find out additional information regarding their particular need that they may have to address in the home setting.

A. Many organizations also offer newsletters which they will mail to people electronically. The one that I really like is the MCH (Maternal Child Health)weekly newsletter. It kind of highlights an overview of the news and events affecting the maternal child health population and I like it because it comes once a week and I can set enough time asside to go over the information in the newsletter. Other people like participating in list serves which are mailing lists and it's an opportunity where anyone where anyone who is a member in the mailing list can post information to the list and it is then distributed via e-mail to all of the members. Then any number of other members can choose to respond. And those are more of an ongoing regular dynamic communication. And and as Anita said, many organizations like the Downs syndrome organizations that she's referred to probably offer that kind of service to interested families or members.

Q. What guidelines would you offer to a family about getting involved with a chat room or a list serve on the Internet? I would say that would be I would begin very slowly and pick one that you think will provide information about which you are specifically looking. It's a lot to belong to a list serve. It can be an inordinate amount of communication going on back and forth and my personal experience is that unless that information really is of interest to you, it can be very frustrating to have to then go in and delete all of that mail that automatically gets sent to your mailbox. Can you offer any additional comment, Anita?

A. I'm just thinking in agreement definitely. Proceed cautiously because everyone that's within that chat room may not be there for the same purpose as gathering information or sharing information. But overall you may even visit the chat room which I have before without even participating. Just reading it to see what type or flow of the comments are being given. If you're not comfortable, you can always get out.

Q. Well I think that's good advice. Now I'd like to talk a little bit about when families are getting information on the Internet and taking their children to see physicians and other medical professionals good ways to share the information back and forth about medical professionals referring families to Websites about families sharing information they got on the Internet with medical professionals. Maybe some examples and some advice about how to make this really productive.

A. Say I can address that for beginners. Tommy has an upper Gi problem or reflux, gastroesophagus reflux. And it's been going on basically all his life. So medically we have to address that. And my pediatrician has suggested one type of information or information regarding a particular medication. And yes you get the natural little handout slip a piece of paper. Well I needed to know more. So I went to the Internet under pharmaceuticals for instance and pulled up that particular type of information, located the information, copied the information that was given me. After I read it, I found out there was a side affect in there and seeing that he is a heart patient, and he's not taking any meds for that, the medicine that the doctor was suggesting was putting added stress on his heart. So I brought that information back to the pediatrician for which he said oops I'm sorry. And he was glad that I brought that information for him. So it's a it's a partnership that we have ongoingly but the Internet helps serve and support both particular parties whether it's the medical or the family to bring clear to the table exactly what some of the needs and issues may be for that particular child.

Q. Okay and have you ever had a doctor recommend a Website that you should look something up for related to Tommy's needs?

A. At this current day I have not. It's usually me bringing information to them.

Q. Okay then I'm happy to hear that that's welcomed and you know that in his case brought in some really important but hard to find medical information that didn't appear on the first discussion.

A. My daughter Donna has severe food allergies and it's ongoing. And her pediatric allergist has suggested to us or to me to look into the a specific Website in regard to the allergies. And it was something I had tapped in already but it was very heart warming to know that the doctor was a step ahead of me too.

A. Well that's great. That's great. I think Faye that a lot of a lot of the allied health professionals like nurses and therapists and nutritionists are beginning to and physicians are beginning to utilize the Internet as a resource and to provide that information to families. I think that health care professionals that are more involved in coordinating care, working with families on care coordination or who are actually initiating assisting families in initiating referrals probably are are using that information more readily and sharing that information right now. And just because of the type of of work they do with and on behalf of families.

Q. Donna could you tell us a little bit about the DSCC and the Website and whether other Title Five programs in states also have Websites like the DDSCC one?

A. Certainly. There is a listing on the institute for child health policies Website that provides a complete listing of all of the Title Five programs in the nation. Each state has a Title Five program and by Title Five I mean a children with special health care needs program. So each state provides some type of services for children with special health care needs. And this is a listing and I'm sure that you probably have that on your Website Faye but if not,

Q Yes we do but please send it to us anyhow so we'll double-check.

A. But in Illinois, The Division of Specialized Care For Children is part of the University of Illinois at Chicago and our whole focus and mission is to provide care coordination and financial assistance when eligibility criteria are met to families who have children with special health care needs. We are are strategically located throughout the state of Illinois. We have 13 regional offices four of which are on the U of I campus in Chicago and we have a Website. Some of the states programs do have Websites not all. And on our Website we try to provide information about the program that we offer and the types of assistance that we offer so that families don't have to contact us directly to obtain that. It's readily available if they're on the Internet at 2:00 in the morning because their child is ill or up because they can't sleep they can get that information. We've also tried on our Website to provide information about other resources. We have a links page like very much what you previously described today. It is just a listing of other web based resources and you can narrow down the listing of resources whether you want to look at health resources, educational resources, legal resources, and family resources. I think those are the are the four categories. We have information about legislation affecting children with special health care needs on our Website. And we also have a page that's called what's new where we try to outline some of the most recent news or events that are maybe of significance to families that we serve or who have children with special needs.

Q. Well thank you Donna. I know that the DSCC Website is really good and has lots of updated information. One of the best things is that you can get the information even when the office is closed, no matter what's going on in your life. Now talking a little bit more about parent support and Anita, I know you're well-known in our area for your really strong support group that you're involved with. What's the difference between parent to parent support in person and on the Internet and can one take the place of the other? What do you think about that?

A. No I don't think they can take the place of one another. Person to person you have the human touch. Mechanically we just have the letters and what we are looking at. And it's lengthy it can be very lengthy for a person to sit down and type in detail or even in abbreviated form just what some of the issues are. If you're involved in a support group, you have other members that may be involved with the support group more so where you can exchange more ideas and network amongst themselves where they may feel more comfortable. And with my support group, the children are invited and they usually come. Not only the children with their special needs, but also their siblings. And so you have the best of both worlds there. And it works out really well.

Q. And do you also help children get involved with using the Internet?

A. I have. Not just talking about my two children but other children also and they love it, particularly when you have a computer that's talking or using a voice language. Children are very excited about that. The motion of the colors and the interaction that they can do, it's a cause and affect. If they push a key something will happen and that mezmerizes them so that's really great.

Q. Are either of you aware of any Websites that are specifically for children who have special needs?

A. There are a variety Faye and right off the top of my head I can't tell you the name of them but they are accessible from our agency Website resource page. One that I can think of is oh you probably know the name of it. Something in bandades.Do you know what I'm talking about?

A. I think I've seen that one. It's on our resource list and I can't remember the whole title right now. I'll look here real quick I'll look it up.

A. Maybe it's crayons and bandades or balloons and bandades.

A. Bandades and blackboards. Is one that I can think of right off the top of my head. But there are a number of children related Websites and a lot of the Websites have if they're not totally child oriented they will have a section on their Website that says for kids only or something along that line to let families know that this is where they're putting information that they're directing specifically to children. And it may be you know some games or information that in a child's language about how they might feel if they have a particular illness or just a variety of information and resources. And Faye if I can, I'd just like to add a note that working on the Internet some children may have the opportunity to develop penpals also with other children who may have the same type of disability or the same type of need that they may have.

A. Oh wow that must be really exciting for a lot of kids and particularly if they're in a school setting where they don't have an opportunity to meet other children who have the same kind of special needs.

A. Exactly or even in the home setting if they're confined to home because due to their illness they're too ill to get out. And so that gives them an avenue of education and connection also.

Q. So we can really see that computers and the Internet are changing life for families of children who have special health care needs in many ways. Now as we close, I'd like to hear from each of you some words of advice for families who have children with special health care needs about using the Internet.

A. Well the one thing that I we haven't spoke to yet Faye that I would like to close with is that i would recommend a particular Website in locating a vast resource of information and it's part of the federal government Website. It's called Healthfinder and it can be accessed at www.healthfinder.gov and this is just a very rich resource that has a search engine. You can search for a particular subject or it has categories of information that's for teens or for parents and it gives you resources from support groups to clinical trials. And that's this is one of the sites where I started on the Internet and I still go back to it. I still find it very very worthwhile and very beneficial.

Q. Well thank you. I appreciate your sharing that with us. That is listed on our resource list. It's one of our links and we hope everyone will take a look at it. Anita, what advice do you have for families of children with special health care needs about using the Internet?

A. Don't be frightened. Take that next plunge. If you have a friend that's familiar with it, ask them to assist you whenever it's necessary or try to find, as Donna has stated, a link that would give you a jump start and that you're very comfortable with. She selected her favorite and one of my favorites is Council for Exceptional Children. And there's a wealth of information on there too that will also support the family and if I can, I'd like to give their Website address too. It's www.cec.sped.org. And that's one Website that they can find an overwhelming abundance of information that they would love.

A. Faye, the final thing that I would like to add is something that Anita had previously mentioned and it's important to reiterate this as we close that you need the families need to keep in mind that the Internet is just another resource. It doesn't replace any existing local resources or any local support groups or their local health care professionals. And it's still important to pursue and maintain local contacts and involvement and use the Internet as a supplement to what you already have in place.

Q. Okay thank you Donna. I think that that's something very important for all of us to keep in mind. And Anita, a closing remark please.

A. Don't be frightened and jump in there again. And as Donna as we both said before, double-check your sources and particularly it's very easy to look for that medical cure. But whatever information you may find on the Internet, recheck it with your private pediatrician or your medical specialist. That's very very important.

I want to thank you both so much. You've shared a lot of really important information for us and for everybody who is listening thank you again. All of the resources and other Websites that were mentioned today can be found in the resource section of our Website and thank you for listening. Bye.

Thanks Faye. Thank you Faye.

End of Webcast transcription.

 

 

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