How to Select a Health Plan for Your Family & Child with Special Health Needs
Originally webcast February 23, 2000, 1:30 pm CST
Good morning everyone. We're really happy that you're with us. This is Faye Eldar from the University of Illinois School of Public Health. I'm the Family Coordinator for the Quality Community Managed Care project, and this morning we are doing a program about How to Select a Health Care Plan for your Family and Child Who Has Special Health Care Needs." Our speakers this morning are two people who are very knowledgeable in this field and we're really happy that they have agreed to share their expertise with us.
The first speaker is Robin Speaks. Robin is the team leader for Admitting And Business Associates And Patient Financial Services at Children's Memorial Medical Center in Chicago, Illinois. Robin has been with the hospital for over 20 years and she oversees a staff of 20 staff members who are involved with the patient financial services and benefits. Children's Memorial is the largest children's hospital in the state of Illinois. She is a very knowledgeable person. I met her first when my child was a patient at the hospital and we have continued to work together.
The second speaker is Kathy McCarthy. Kathy and her family live in Crest Hill which is a southwest suburb of Chicago. She has a 14-year-old son and a 7-year-old son. Her 7-year-old son has special health care needs. He has a condition called spinal muscular atrophy. Kathy and her husband recently selected a new health plan for their family and this is the reason that we have invited her to be on our program today.
We are aware that very often individuals and families don't have a choice of health plans and they only have one health plan available to them, but frequently, people get a choice of health plans typically at an open enrollment period at their job or when they are changing their employment. What all families need to do, but particularly families of children with special health care needs is make a decision about a health plan that will meet the child's special needs as well as serving the health care needs for the entire family.
Q. Robin, can you tell us how people find out about managed care plans that they could choose from?
A. Well, typically a person can find out about managed care through their employer. A lot of information is provided. A lot of material is provided through the employer. For example, booklets, handouts, leaflets and one of the important things that one must do is call and ask questions about that particular managed care program. Ask questions and keep asking questions until you're satisfied with answers. Policyholders still don't understand the process and especially if you have a special needs child. So it's very important to ask questions through your benefits person at your job or ask other people who may be in those HMO plans or PPO plans, which is the preferred provider organizations. Keep asking questions until you are satisfied with answers.
Q. Kathy, can you tell us how you and your husband got informationthat you used in making your decision about changing your health plan?
A. As Robin had said, you can get it through your work or through human resources during open enrollment. With my husband's employer, they had a choice between the HMO or the PPO. So he looked into the PPO because from what we understood, PPO's have where you can choose the physicians that you want to go to but also because Mark has SMA, we wanted to choose physicians that knew a little bit about that and what they could offer us as far as helping Mark.
Q. Kathy, could you tell us what is SMA?
A. Spinal muscular atrophy. It is a genetic disease that affects muscles and spine, which is like the name, spinal muscular. Well, they are lacking this SMN gene which makes your muscles work so therefore, the muscles become weakened and because they are not being activated, they become atrophied.
Q. Okay, thank you for explaining that to us. Robin, what are some examples of questions that people should ask when they are considering a new health plan?
A. Well one of the things you should ask, especially when children are involved, who are your pediatric specialists and what hospitals are they located in? What are their specialties? Are they board certified? How long have they been working in this field? How many patients do they manage? Besides the normal questions that you go through, find out what other programs are available? Is there durable medical equipment available or home health care? Can you provide speech, physical or occupational therapy or things that would be of particular interest to your child if that child has special needs?
Q. I have a couple things I would like to ask about that, Robin. Could you explain what it means to be board certified and why it's important for families to know about that?
A. Board certified means that this particular physician is an expert in that particular field. He or she has gone through the fellowship, has gone through their residency and internship and has a number of years in the field that they are working in. To be board certified means that they have met all the criteria of the medical organizations and they are an expert in that field.
Q. So this would help somebody find a doctor who had the most expertise.
A. The most expertise, correct.
Q. Okay thanks. What kinds of questions should people be asking about the costs involved with the different health plans?
A. That's a very good question because many of the products of the insurance plans have different costs involved. They have a co-payment or a deductible. Let's say for instance you are going to use the doctor's office and there may be a co-pay of $10. That is synonymous with whatever plan the insured has chosen with the particular insurance such as $50 for an emergency room visit or their may be no cost at all, depending on the plan or product of the insurance company. So it is very important to ask what the cost is to me or the family if I use this PCP, which is primary care provider or specialty, or an emergency room. So you have to keep all of those questions in mind. How much is it going to cost me besides my regular premium or payroll deduction for my premium.
A. But in addition to paying a premium for the cost of your health care in which your employer also shares a part of that cost, you in addition will have to make a co-payor a deductible. So if you are paying $38 for a single plan or maybe $100 for a family or group plan, in addition to that for each visit to the doctor's office or each visit to the emergency room, there is a cost involved and you need to ask what is the additional cost to me?
Q. Would you say between health plans, each one has different costs and different charges?
A. The most that I've seen with some of the HMO's or the points of service or the PPO's is a $10 co-pay for an office visit and anywhere from $25 to $50 for an emergency room visit.
Q. So what you're saying is that people have to be prepared in addition to the monthly charge that may be taken out of their paycheck, they will have to pay an additional sum, depending on how many medical services they need.
A. Correct.
Q. Kathy, can you tell us about your family when you were looking at health plans? What questions did you ask and what decisions did you make about costs to you?
A. What we did was we talked with the people in the human resources department about how much the plan itself would cost us monthly. The plan we have now does cost considerably more, but the benefit of that is that we can keep the same physicians and Mark would not have to change doctors and then we would have to go through the whole thing of reintroducing Mark to a new physician and have the physician look over Mark's history. This way we can keep the physician that we have. So that was really important to us. Mark is 7 so to have him still feel comfortable with the same doctor and not have to change over was important. Also for myself and for my husband, for just the regular office visits, how much would that cost as to what we were paying before? If we did need to change doctors, where are they located and what hospitals they would admit to or did they have physician privileges at the hospitals they go to. How far did we need to travel if it was out of our town? All those things I think are really important. The thing is like Robin had said, you really have to ask because a lot of times the insurance company will give you the basics because that may be all they are required to do. But I think if you want to know what you need, you need to ask because it is your child and you have that right. You're the speaker for your child. Your child is the person who's getting the care, but you're the one that's got to do all the leg work so to speak. All those were very important factors.
Q. Who did you ask? did you ask somebody in the work place or somebody who was an employee of the insurance company or someone else?
A. I had asked for a booklet through my human resources. From that booklet, I looked to see who the providers were, who the physicians were. At that point, I had called the doctors' offices and I asked them have you dealt with a child who has SMA? How many children do you see? Most of the time I try to get a pediatric neurologist as opposed to a neurologist. I wanted somebody specific in that field who would deal with children. I called the insurance company and asked: Is this doctor covered under your plan? A lot of times you have to do that. You have to call your insurance company to find out if your doctors are covered. Even though you think they are, when you get the statement back that says oh no your doctor is not in this plan or in this network. It's time consuming. It takes a lot of leg work. But this way, you are more prepared and you basically know everything rather than going into something and not knowing. You do have the right to do that. You can call insurance companies and ask them. The insurance company we have has been more than helpful. They will give you that information. They'll say well this doctor isn't and sometimes they'll say this doctor is. If they say no that doctor is not, then it's up to you to ask well then who is? Sometimes they can give you a list of who is. Then you just have to call these doctors.
Q. Kathy, I have a couple more questions. The first one is why did you make a decision to change your health plan and how much time did you have from when you made this decision until you had to tell your employer which health plan you wanted?
A. The reason why is I was thinking about changing jobs. We weren’t sure that if I were to get a different job, what insurance would they have or would they have any at all? We knew that my husband's place of employment did carry insurance. So what we have at the place where I work is the open enrollment that Robin had spoken of where at different times of the year you can enroll. Also the same for my husband where at different times of the year you can enroll. If there is a change in the family situation such as if you get married or divorced or if there is a death or birth in the family, those are exceptions where you can change from having to go through the open enrollment. Typically, you have to wait until open enrollment. for me we had a month's time. So between the time I wanted to drop my insurance and add my husband's, we had a month. Within that month's time, we were covered, but instead of just going ahead and dropping it, I went ahead and contacted the insurance companies and doctors' offices and the places of employment, both mine and my husband's. I just went ahead and did everything. I asked questions and found out who was covered and who was not covered, how much the deductible was and how much out-of-pocket would be, how much the office visit would be and if they had a prescription plan. A lot of times that's important too if they have a prescription card. Otherwise, medications can cost a whole lot. I had a month to be able to say okay, I do want to change or I don't want to change. Luckily, with our places of employment, they pretty much carried a lot of the same physicians.
Q. It sounds like you must have spent hours and hours on the telephone.
A. Yes Like I said, it's time consuming. But I felt it was worth it in the end because knowing that I was prepared ahead of time, I knew where my son was going to go. I knew the doctors already. It made me feel more at ease to know what to expect instead of just going in cold and not knowing anything. This way you can prepare yourself. This way, I knew what to expect and how much it was going to cost me. Another thing I needed to do in the event of let's say they're not going to pay for this. I needed to find out what other services I could get that may help to offset the cost?
Q. So this is really a complex process when you have a child with special needs and you're planning to change your health plan and start in a new health plan. Could you tell us a little bit about the materials that you share with the families?
A. Sure. We have booklets and brochures about knowing the process of MCO's which is Managed Care Organizations, whether they are HMO's or PPO's or EPO's or POS, Points of Service and Fee for Service, those types of things. It's very educational for those consumers who are very interested and who really care and are pro-active and an advocate for their child. They will read this information and there are telephone numbers listed with the different insurance companies. We're not advocating any particular insurance company. You can ask questions and get answers to your questions. We also have telephone numbers available, and I don't have any in the office available with me right now, of the Illinois Insurance Commission if you have questions or concerns about different health plans.
Q. Robin, what is the insurance commission? Is that a private agency or is that part of the government?
A. It's part of the government.
Q. What do they do?
A. They will investigate any kind of concern that you have. If you think you are being treated unfairly with your insurance company or if you are not getting the services that you need or you are not getting the proper paperwork done that you need, you can go to the insurance commission and they will investigate that particular insurance company or that particular medical group or a particular doctor for you and they will report back to you their findings.
Q. Okay I know that the brochures you're talking about and information about the insurance commission and other resources will be on the web site under resources and anybody who is listening to this broadcast can click on to the resources.
Q. I would like to talk now about families and professionals talking to doctors who are currently treating the child when you are making a decision about changing your health plan. Is this something families should do and do doctors have discussions about different health plans? Maybe each of you can fill me in a little bit about this from your perspectives.
A. Kathy, do you want to go first?
A. Sure. Most of the time I didn't speak to some of the doctors about switching over. The only thing I did when I thought about moving over, I had asked the doctor if they were in this plan. They pretty much said yes. A lot of times the doctors may say each insurance plan is different. Check with your insurance company. If I needed other services that my insurance didn't cover, well there is this one we go through called DSCC, Department of Specialized Care for Children. They will help to offset the cost. Now I did not know about this particular organization, but the doctor said well here are some that we have referred other families to. So from my experience, doctors have been helpful in that respect. They will also help you in that respect like if you can't pay for this, they can help you with something that is called a sliding scale such as pay what you can or they will say these are other places that will help you pay for that that your child can keep going to. I have not met a physician yet that said oh if you can't pay, I can't see your child. I have never encountered that at this point.
Q. Well this is really important information. This is something else we will be putting up on the web site in our resource list. Every state in the United States has a Title 5 children with special health care needs program. In Illinois, it is called the Division Of Specialized Care For Children and we will have the contact information for this program so families can get connected to what is available in their state. Robin, can you tell us a little bit from the hospital perspective about discussions with physicians related to choosing a health plan?
A. Well I was agreeing with Kathy there that doctors are becoming a little bit more savvy about health care insurance plans and different provider groups whereas 2 or 3 years ago, they didn't really know. I've never heard except in some cases that a physician will not treat a child because you don't have a particular insurance or you're out of network. But very often, the physicians will sit down with the parents or the insured policyholder and will discuss their insurance plans and what their particular rules or policies are with the parents. Most of the time it is agreeable concerning information being passed between the parents and physician. But many times, it is the parents or policyholder that has to do the leg work or the telephone work to get the most information for the questions they are asking. The physicians really don't know.
Q. There is one other thing I wanted to remind everybody that often comes up in discussions with families is that there are many many different insurance companies out there but each employer makes their own contract with the insurance company so you and your neighbor might have insurance from the same company, but you have different employers and that means that the benefits in your health plans will be different, depending upon what your employer signed up for with the insurance company.
A. That's correct.
Q. Now I know many children who have special health care needs need things such as medication, equipment, supplies, different kinds of therapies and treatments, ongoing medical tests and nursing care. I would like to talk now about how you find out if these things are covered and how they are covered and how you arrange them to meet the child and family's needs. Kathy, could you tell us about this from your perspective?
A. Sure. A lot of times too, it's my experience that it was just like on an as-needed basis as far as Mark. We did not know that Mark was going to need a wheelchair, although we did see maybe years down the road. So we did look at our insurance policy for a clause that is called Durable Medical Equipment. They did provide so much money for that. At one point, one of the insurances that I had felt that this was something that was not needed at the time, so what we had to do is we had to appeal it. We got a physician's letter as to why he needed it, what it was used for and that it's not just something extra, but that it is something that's of a medical necessity. Sometimes you do have to do that. Now this is something that Mark did need and sometimes the insurance company at the time may say no this is something that is not needed or we don't see why it's needed. So we might need a little more information to go on. So that's where you can work with your physician on this and say hey, this is what's happening. Then you get the letter from the physician and the physician can write down their recommendations, why they are recommending this, what it's needed for, etc. We had to do that at one point and we sent a letter in and the insurance company will review it and then, like I said, fortunately, they did come back and say okay fine. But at first, if they deny and it's up to you like Robin said, you got to keep going. Just keep going back and say what other information do I need? Work with your physician on this and say hey, the insurance company is saying this and what can you do to help out? A lot of times the physicians will help out because that's what they're there for. They are there to help you. I've had no problems with my physicians writing what they call letters of necessity and then again it's sent to the insurance company. I keep copies of everything in case for some reason it may get lost in the mail or something comes up. But I keep copies of everything. The insurance company will review it and then they send a letter either back to you for an explanation of benefits or maybe to the doctor.
Q. Robin, is there anything you'd like to add on this topic?
A. I think Kathy said it all.
Q. I would like to talk about needs that families may have from a health plan that are not strictly medical, but they are more like things that we call enabling services or accessibility needs. For example, finding out when you are looking at health plans if English is not the family's first language, how do you find out if there are providers who do speak your language or find out if the office is accessible to a child who uses a wheelchair or other mobility equipment, if they have a library of health care information or any seminars. Is there help with transportation? Do they have interpreters? Do they have service coordination? Do they have lectures about special health care needs that families can go to. How do people find out about these things?
A. With the information that is provided by the insurance plan. Language could be a little bit difficult. I think you need to start out with someone who can speak English. Then find out the information from the physician's offices. Keep asking the questions or can they bring someone in who can interpret for them into their language? Do they have accessibility to the AT&T language line with access codes? Keep asking those questions. As far as transportation, some insurance companies will provide or pay for transportation, but again it needs prior authorization and how do you do that? You do that by having that relationship with your primary care physician and a letter of necessity and sending that to the medical director. A decision can be made with that. The key is asking questions and following up.
Q. Do you do this over the phone or on the internet or are there other ways to do this?
A. It can be done on the phone. It can be done in person. It can be done on the Internet. Any type or line of communication can be done.
Q. Do all insurance companies have case managers or service coordinators?
A. Most of them do to coordinate the care. They have a continuum of care for chronic illnesses, so you stick with one case manager and perhaps one primary care physician so those two people will know everything about your medical care, about your history, what your needs are, and they can coordinate different things for you.
Q. Can everybody get a case manager or do only some people get them?
A. Those who have chronic illnesses are assigned case managers and yes, they will be with you from beginning to end. Now you may have difficulty sometimes with your case manager, but the more you talk and the more you share information, the more your primary care physician is involved with the case management of the child or patient, then the better services you will get.
Q. Kathy, can you tell us about your experiences in working with a case manager through an insurance plan?
A. One of Mark's case managers has been very helpful. She is his primary case manager so as Robin said, it's great because they have the history of the child. You don't have to explain to a new person every time what is going on. They keep everything on file so that they know what's been had, what isn't, what needs to be done, etc. They are pretty knowledgeable and they also can help you in different ways. They may even ask you questions that you're not sure to ask. For instance, we had to size Mark for his wheelchair. As he grows, the wheelchair will essentially grow with him. So, she asked the question is this going to be a whole new chair or is it just going to be parts? I thought that that was a good question because I didn't think about that. So, I had to go back to the person who makes the chair and ask them that because a new chair may cost more than just the parts. So, that's a good question in that respect because they are also looking out for your benefit as far as how much it's going to cost you as well as for themselves. They may ask questions like that which could help you out in the long run or something that you may not think of. Sometimes you can come across difficulties where they may say something like I don't know if we can really provide that. That's when you have to speak up and say that and say well that's what I'm being told from the doctor. Let me go back to the physician and ask him and I will get back to you. If you keep it amicable and try not to attack somebody, they will be more receptive just like we would be more receptive if somebody was helping us rather than attacking us. The case manager can say no way, we're not going to pay for that. That could just put a wall up. Try to keep the lines of communication open. Remember that they are there for you, but they are there for the company and they can only do so much. They are people too. Just try to work together on this. Ultimately, this is for the benefit of the child.
Q. Well, that is really good advice, Kathy. You have now switched health plans. Do you have a new case manager in the new plan?
A. Actually, the case manager that Mark is assigned to is through DSCC. Now the insurance company itself, it's like a same company but it's a different branch. So all of Mark's records went over to this new branch. So even though I work with a different person on the phone who is in the claim department, they have everything of Mark's there. They have his history because what I would ask them is do you know about my son? And then they say let me bring up his information so they have it right there. So, that's what I ask, do you know about my son? Are you familiar with his case? If they aren't, then I know what I need to do to inform them about my son.
Q. So it sounds like you have this really well thought and planned out.
A. Well at first I didn't. At first it was very overwhelming.
Q. Robin, we've been hearing a lot lately when people talk about quality assurance and health plans and health care report cards and things like that which we see in the paper, can you tell us a little bit about what is quality assurance and what it has to do with health care and making decisions about health plans?
A. Well simply put and I can tell you about one organization called the National Committee For Quality Assurance. That is a committee that gives accreditation which is granted to managed care plans that deliver sound care and sound service. They have systems for consumer protection and quality improvement that meets their rigorous requirements. So any one of these MCO's Managed Care Organizations, if they are accredited by the NCQA, you are guaranteed to get the best of quality care and sound medical services by a medical provider.
Q. How would people find out about this?
A. You can call the association and again I'm sorry I don't have that phone number right now, but I will have it for you later, to find out if that insurance or that product of the insurance is accredited by the NCQA. You can look it up on the Internet as well. Many times the insurance companies or plans or products will volunteer that information.
Q. Do you feel it would be important for families to find out about this?
A. Yes and I would encourage anyone who has either signed on or is currently on an MCO to find out whether your insurance or the product of the insurance is accredited by any one of the organizations, but particularly the NCQA.
Q. I know you mentioned when I spoke to you earlier before the show that you are involved with a parent organization related to your son's disability. Were you able to get any information from them about selecting insurance plans?
A. To be honest with you, I didn't ask them, but they do provide that service. They do send out a newsletter and they do have different services. You can always call them. they have an 800 number and you can call and they have a listing of different physicians in the area who may have some expertise with SMA or just a listing in general. There are parent networks and organizations that do have listings of that.
Q. We will be putting contact information for some of these parent organizations and publications and resources that they may have about health care insurance on our resource list on the web site for people to look at. Well this has been a very interesting conversation and I certainly have learned a lot and we discussed about how complicated it is for families who have children with special needs when they have to choose a health plan.
Q. Kathy, do you have any other words of wisdom? I know you've shared so much really good advice with us.
A. The only thing I can suggest is just ask. Ask questions if you're not sure about something. Know that it's your right as a parent and as an insurance carrier that you can ask. Most of the time if you ask questions, it's been my experience that people at the insurance companies will answer with no problem. Also for my child, we are the best resource and the best voice so to speak for our child. These children are going to grow up and be adults. They will still have these types of needs as they are adults. That way too, it can help prepare them for when they get out on their own, when they are an adult and what they need to do for themselves because then they will have to speak for themselves and this way we can help them.
A. Very well said, Kathy. I agree with all of that.
Q. So to summarize what we've gone over is you have to do your homework and you have to be assertive. You have to keep records. You have to identify professionals who can help you in navigating the waters of raising a child with special health care needs. There's a lot of information and a lot of helpful resourceful and knowledgeable people out there who can help you. I want to thank Robin and Kathy very much for sharing their expertise with us. You're both extremely knowledgeable people and I'm really grateful that you were able to participate in this webcast.
A. Thank you very much for inviting me.
A. Thanks for asking.
Q. It's my pleasure. I look forward to hearing from you soon. Thank you.
End of interview.