Beyond Insurance: Other Resources for Accessing Care
Originally broadcast on May 24, 2000
Hello everyone. We're really happy that you're with us today. 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 today we're doing a program about different programs and services that can assist families with paying for medical bills for their children who have 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've agreed to share their expertise with us.
Our first speaker is Diane Becker, LCSW. Diane is a social worker at the University of Chicago Hospital in Chicago, Illinois and she has many years of experience working with children who have special health care needs in their families. As a matter of fact, in the past when Diane worked with Title 5 Children With Special Health Care Needs Program, she was a consultant for my child and my family and that's how I first got to know her. The second speaker is Barbara McCann from Oak Forest, Illinois. Barbara is the mother of Colleen who is seven years old and has special health care needs. She and her family have had many varied experiences trying to access medical coverage for Colleen and the family and we're really pleased that she'll be able to share that with us today.
Q. Now I'd like to ask each of the speakers to introducethemselves and tell us just a little bit about theirbackground and how they learned about what families need toknow for paying the bills. Diane.
A. Hi, my name is Diane Becker and I am a licensed clinical social worker in Illinois. I'm currently employed at the University of Chicago Childrens Hospital as a medical social worker for the neonatal intensive care unit. I have been working as a social worker in Illinois since 1988 and I have been employed in private, county and state organizations. Throughout the years, I have had the opportunity to work with thousands of parents who have children with health care needs.I would just like to take this opportunity to commend all parents throughout their challenge in obtaining resources an care for their children.
Q. Thanks, Diane. Barbara.
A. Hi, my name is Barbara McCann. I am the Mom of five children. They range from age 23 to 19 and then we have Colleen who is seven years old. Colleen was born prematurely and she now has cerebral palsy spastic quadriplegic. So she has no independency, no vocabulary, so we had to seek a lot of resources over the past seven years.
Q. Well thank you, Barbara. I'm really happy that you can be with us today and share some of the knowledge that you have gained in advocating for your daughter Colleen. As we know from many families who have children with special health care needs, finding a way to pay for their medical care becomes a major issue. It is something that families typically don't have any experience with before the child is born or joins the family, and it can be often very difficult and confusing to find out what programs and services are available. The first program that we're going to talk about is Medicaid, which is a health insurance program for low income persons that is run by the federal government. Diane, could you tell us a little bit about Medicaid and what families need to know about it?
A. Medicaid is a jointly-funded state and federal government program that pays for medical care for those who can demonstrate a need. And this need is shown through income and asset standards as well as being someone that has a dependent child, is pregnant, blind, disabled or over 65 years of age.
Q. Okay and I think it's important to know that in each state, the Medicaid program is administered differently and it might have different eligibility rules and we'll talk a little bit more about that later. Barbara, can you tell us about your experience in finding out about Medicaid and applying for Medicaid for Colleen?
A. Okay well we knew that our insurance under COBRA was going to be ending in November. I started between August and September trying to get information on where to go. My husband is employed and he is the only employed person in our home. He is self-employed and that made it more difficult to get Medicaid because you have to go under a special department. You still have to apply, do all the paperwork and when we went in there, they basically told us that we were not eligible because my husband made over I think the limit was $10,000. Our income was $10,000 more than their allotted amount for the year.
Q. Barbara, first could you tell us what is COBRA and how did you get involved with that?
A. Okay well my husband was employed at a company and they had group insurance. It was a big company. So when my husband left the company, we were able to stay on the insurance but under a COBRA plan. And that I believe is a federal law that you can stay on COBRA. You have to pay every month and everything, but they do havethat where a family isn't just out in the cold. It's expensive but we were fortunate to be able to do it. But like I said, we only had the 18 months and that ended in November.
A. Yes COBRA is Consolidated Omnibus Budget Reconciliation Act of 1985, and that was created to kind of create a bridge between the health plan for workers, spouses and their children who when the job ends, still have the option to maintain some health insurance and that is for up to 18 months at your own expense. And that is difficult because it's dependent upon many different things, and you do have to pay out of pocket for that full expense.
Q. See what happens in most places where people are able to get insurance through their work is the employee is asked to pay a percent and the employer pays the rest of the insurance cost for their employee. But under COBRA, the employer no longer pays anything. The family or the insured person has to pay the full amount and it's often a very large amount. As Barbara said, her family was asked to pay $600 a month. Now in terms of financial eligibility for Medicaid, again, each state sets their own eligibility. What they use is a percentage of what's called the federal poverty level which is recalibrated every year. And it's the base line amount that the federal government believes the family needs to have in order to survive and there's a formula. So it's adjusted by the family size and some states also count assets and there are other considerations that they take into account. Now on our resource page of our web site, there's a really good resource for everyone to get more information about Medicaid and also about the federal government Children's Health Insurance Program which is called Kid Care in Illinois. The web site's called Focus On Child Health. The address is www.hrsa.gov\childhealth. It's one word. If you go to that page and enter the name of your state, you will be able to get the resource information, including addresses and telephone numbers for health programs that the federal government is involved in in your state. Diane, can you tell us a little bit more about the new Children's Health Insurance Program that was started by the federal government just a few years ago? What do families need to know about that?
A. Yes. That was created from the State of Illinois introducing a program titled Kid Care which offers affordable health insurance for children through age 18 to pregnant women and their children. So these services are free or low cost and eligibility is based on a family's income.
Q. But it's a higher income level than Medicaid. Is that correct?
A. Correct.It also provides an extra unique situation where if a parent is employed and has health insurance through their employer and they need assistance paying for insurance premiums, this program, if you financially qualify, can also assist you with paying the insurance premium so you can maintain that insurance through your employer.
Q. Oh you're talking about the rebate program right, Diane?
A. Right.
Q. That's one of the special features that we have here in Illinois which is really outstanding. There are very very few states that have that and that means if a family is working paying for insurance at the same income level that they would be eligible for Kid Care if the children had no insurance, they can have their employer fill out the form documenting how much money they pay every month for insurance and they get a rebate check with a set amount per child every month from the state. So that's something really important to know about.
A. Just an addition on Medicaid. There are many who have income and assets that may still qualify for the program by paying a portion of the medical expense. And that term that is used is called a Spend Down. The Medicaid program will pay for medical expenses when a person can show that they owe or have paid a certain portion of the care.
Q. Okay thank you for bringing that up. That's something else that's really important for people to know about and often is not well understood. And basically, no matter what your income is, you can go and apply for Medicaid and if you have really big medical expenses or unfortunately you or your child has to go into the hospital, you need to bring those bills to the Medicaid office and they will work with you to apply those bills against the Spend Down so you could potentially become eligible. Now Barbara, can you tell us about your experience in applying for Kid Care?
A. Yes. I had heard about Kid Care in April and knowing that our insurance was going to be ending in November and as any parent knows with a child of special needs, you've got to work really long in advance to get as much information as you can and get all the paperwork together. So what I did was I got the application and I sent it in in April. I explained the situation that our insurance wasn't ending until November, but I just wanted to see if we would qualify and especially at this point, see if we would qualify for the Rebate Program. Again, we were not eligible. At this point we were $4000 over their allotted amount. I just don't understand sometimes how they can set these amounts. They're just not to me as a parent, they don't seem realistic enough. The Kid Care Program they were polite. They were very helpful in filling out the application. We did submit it and once again, like I said, we were turned down. But we would get something like $75 if we were eligible, $75 a month toward the COBRA for Colleen's portion of her health insurance.
Q. Okay now Diane, I think Barbara has brought up something really important in telling us about applying for a program and finding out you're not eligible. Could you talk a little bit about why families should go through all the paperwork and apply for programs even if they think they might not be eligible or somebody in the office says maybe you're not eligible. What would be the reason to do that?
A. Yes. There's a couple of different reasons. The first I would just like to say that I would encourage any parent when they are applying for a specific program to if they are denied service, to automatically appeal that decision and that's for a couple of different reasons. One is that there is financial and medical guidelines in place as criteria to determine eligibility for different programs and this appeal would allow the agency to examine this particular case a little more carefully and to bring it to an administrative level. And that's beneficial for families for a couple of different reasons. The first is that there is typically a large amount of people applying for different programs and there can be an error that was made in denying services. So you would like someone to re-examine that to make sure that that was correctly examined. The second reason is that an administrator has the ability to be more influential in changing their own policy guidelines and can advocate for a family more at a state level. It is more helpful to bring to the attention of the administrative people that this is a real need in the community.
Q. Okay so these are really helpful guidelines that I think most of us have not thought too much about Diane and I want to remind all families that you do always have the right to apply for a program in writing. It's not possible to determine over the telephone whether or not somebody is eligible. Yet sometimes we hear from people that they called some government office and they said oh no you're not eligible. They never actually filled out the application. Can you tell us a little bit about that?
A. It is important to get something in writing because there are numerous different programs available in the community and because it's based on funding from different resources, everyone likes to be considered as payer of last resort. That means that you have tried other places and you have been denied and there is no resource available to you. So this is important because you are able to show documentation to different organizations that you have applied for service and have been denied and you would be then eligible for different types of charity programs available.
A. One thing I would like to add on this. When I did talk to somebody at Kid Care, I don't know if it was a case worker, but I kind of said to him what does a person do? Now basically what he said was to keep your application showing that you were denied. If your daughter ever goes into the hospital, you can show them this. Hospitals have money set aside for situations like this.
A. That's a good point, Barbara. Many of the public hospitals do have different types of charity programs that they have set aside. They do not openly advertise about those, but they do have different resources that they an help people who meet a financial guideline. And the reason that they do not advertise regarding that is because they encourage families to work with a hospital social worker to look at all the different options in the community as well as the hospital. So they do like to offer that as a resource to families, but they also want to encourage the families to work with a social worker for a long-term option and in other situations where the particular hospital may not be involved.
Q. One other thing that I'd like to add to the point that you've raised, it's also really important that before you receive care from a hospital or doctor, you let them know about your situation that you applied for Medicaid or for children's health insurance and you were not accepted. You don't have insurance. The hospital or the doctor most of the time will work with you to set up a payment plan and you need to be up front about this, not wait until after you have received some treatment. And I know this is often really embarrassing when you have to tell professionals people who are strangers or even your own doctor about your financial difficulties. Many families go through this and hospitals are use to working with families and many doctors are use to working with families in this way.
A. Yes and also many of the programs require medical information that the doctor is very critical in providing. So it is important to include the physician and what you're applying for and what you are going through out in the community because the hospital does have different information about resources and if they are not aware that this is something that you need or want, then it may not be something that they offer to you. So it's very important that you do share that information with your physician and they do have other staff such as a social worker or a community worker that could help you get linked to other resources.
Q. Barbara, did you inform Colleen's doctors about the situation your family was going through with not having insurance?
A. Oh yes I did. We're also under the Division of Specialized Care for Children. We've been on that since I believe 95 and so that has been helpful too. They have worked with us regarding the insurance situation and what would happen and what would go on. I did talk to her pediatrician and he was just wonderful. Colleen has gone to him since birth and I think as a Mom you get kind of nervous with this the insurance and you think well if you don't have insurance, they're not going to take proper care of your child and that was one of my things. And he just reassured me that don't have to worry about that. He says you know us by now and you know that we would do whatever we can to help you out. So that was a real encouragement.
Q. Well it's really good to hear that and you've just mentioned one of the most valuable programs that exist today for children in the United States who have special health care needs and that is the Title 5 Division of Specialized Health Care for Children programs. These are again, like Medicaid, a federal state partnership. In Illinois the program is called the Division of Specialized Care for Children. In each state the program has a different name and may be administered a little differently in terms of eligibility and services. But this is the umbrella in each state for children who have special health care needs and the way to find the information about your state is to go over to our resource page and go to the web site for a federal organization called Nichcy. It's www.nichcy.org. Then click on the state of your choice for a state resources sheet and you will get a listing of all of the government agencies related to children who have special needs in your state. Diane, I know you worked for children with special health care needs programs for a number of years Can you tell us a little bit more about it, what people need to know about it?
A. Yes. That that program is based on first of all a medical criteria that a child has a specialized health care need that is amenable to treatment and chronic in nature. And those are different types of categories that are offered such as orthopedic, neurological, things like that that you could find more out. You could find more information about different categories that are eligible on the web site and they case manage medical care. So if someone is above a certain income and they are not financially eligible for many programs, they will help work with you in the community to link you to other providers that can work with you on either a sliding fee basis or receive medical care free of cost. The second portion that the program does is that families that do meet a financial criteria, they help pay for all of that specialty care that's needed for the child. So that would be all of the medical specialists involved. They do not cover things such as acute illness or injury, malignancies, cognitive disorders or psycho-social disfunction. But the case worker will work with you to link you to other resources in the community that do assist with those types of disorders.
Q. I think it's really important for us to remember that in each state the program offerings and eligibility for the Children With Special Health Care Needs Program is quite a bit different as well as the name of the program may be different so it's really worth while to check in your state and find out what's available. But we've been talking so much about applying for programs and applications and Diane, I would like to know as a social worker what do you think are the most important things that a family needs to get ready before they call you or another social worker or case manager up to get assistance? What kind of background or homework do they need to do to prepare for contacting you to get help related to paying for medical bills?
A. Many of the programs that a family would be applying for require the same basic information. So what I recommend for families to do is create some type of filing system or a specific binder that they can have all of this current information in and they can carry that with them as they apply to different services. They will need things such as the birth certificate, tax forms or their last two paycheck stubs to indicate their income. They would need the social security card. They would need some information that has their mailing address on it to demonstrate where they reside. They would need some sort of medical information. I always encourage families to have at least one copy of a medical report with all of their childrens' diagnosis on the report and that is available then for them to have organizations Xerox a copy of that and for them to still maintain that information in their home. The families are the experts on their own children and what type of care they would require. So it's very important that they understand medically everything that's going on with their child and have a very good understanding with their physician and then they are able to navigate some of these financial resources much better.
Q. Now Barbara, can you tell us a little bit about your record keeping or filing system? Do you have a file cabinet that's bigger than your daughter yet?
A. Almost.
Q. How do you keep the papers in order?
A. Well I'm glad you can't see my table right now cause I have a lot of papers all over it right now. I have a filing system. I just have each doctor each hospital that we go to and when the bills come I just slip them in there and then when the insurance pays or DSCC pays, I just match it up with that. I do have just a file on Colleen as far as her medical reports. I have a file for funding information. Things that come through and even necessarily if I don't meet that or if I was declined on it, I do try to keep some of the information because you never know. In a year things may change and you may need some of that information. So it's readily available to you to keep. It does take up a little room but it's worth it when you have to go back and look up something or you're kind of stressed out. You can go through the funding and loan file and just see what options are available.
Q. How did you get started with your filing system?
A. Well I got started because the papers just kept coming in and it was very overwhelming. We have a very hectic schedule. When I started applying to programs, I needed to get this information together. And instead of it taking me two days to find it, now it will hopefully take me five minutes to find it.
A. That's a good point, Barbara, about saving the information of the agencies that you have applied to and that is for one reason to be able to demonstrate to other programs that you're applying for that you have checked out those resources that are available. The second thing is because a lot of times the different programs are dependent upon funding, that does change from year to year or every few years as well as the income and medical guidelines will change, based on the need. So it is important to maintain numbers to be able to check back and see if there have been any changes in what the eligibility criteria is.
Q. You know while you're saying that, I remember also when there are changes in your family, if you've been rejected for a program like SSI, Supplemental Security Income, on financial grounds, if your income goes down or your family size goes up, you need to reapply.
A. Yes.
Q. Diane, can you tell us a little bit more about SSI?
A. Yes. SSI is Supplemental Security Income and these are benefits that are payable to disabled children under 18 who have limited income and resources. And it will provide a monthly check to be used toward that child's medical needs at that time. When they're 18 and older, the parents' income is no longer used to determine eligibility. And disabled for Supplemental Security Income is defined as marked and severe functional limitation. So they're looking at a child's condition that is expected to last at least 12 months or longer or expected to result in the child's death.
Q. And again this is an important additional resource for families to know about. It can provide some financial help for the extraordinary cost of raising their child with special needs at home. If in doubt, just like we talked about all the other programs, you should go out to the Social Security office and apply. I know there are other kinds of programs that people access for health care such as Shriners Hospital health departments. Can you tell us a little bit about that?
A. Shriners Hospital has 32 hospitals throughout North America and they work strictly off of donations and they do their own their own fund raising for their program. And the one in Chicago is Chicago Shriners Hospital. It's a 60 bed pediatric specialty care hospital, and they provide services for orthopedic plastic reconstructive surgery and spinal cord injury care to children at no charge to the family or to a third party.
Q. So for children who need certain kinds of special specialized care surgery, they might be able to access a Shriners Hospital, if not in their state, in their region. But it's not a general hospital where a child would go if they had pneumonia or they broke their leg or anything like that. Is that correct?
A. That's correct. It's very specialized in terms of those categories mentioned. It's also not an emergency care center that most of the hospitals are equipped to deal with. There are some emergency admissions for burns at specific state sites.
Q. And Barbara, did you look into Shriners Hospital for Colleen?
A. I submitted an application about two or three years ago and they sent back information that we would be eligible. But we never really, at this point, have had to use them.
Q. Well Shriners is an important program for families to know about and as Diane mentioned, there are a number of hospitals across the country and I understand that Shriners also has a kind of special relationship with the Children for Special Health Care Needs Programs in the states. Can you tell us a little bit about that, Diane?
A. That's correct. They do. They have a social worker in Shriners that specifically works with linking families to the Division of Specialized Care for Children when they meet the criteria at the hospital and this is important because sometimes there is testing, x-rays, labs, things that are required that Shriners would not be able to do within their hospital. And they do need to access that care outside of the Shriners Hospital. So it is a working relationship between the two as well as the Division of Specialized Care for Children. They have a certain amount of money that they can pay each year for a child's care and they know if the worker is aware that the family is reaching that limit and the child needs a special surgery or a procedure done, they will also recommend that the family receive the care at Shriners to then use the money from Specialized Care for Children for another form of treatment.
Q. Okay that's really good to know and again, you can go to our resource page and go to the Shriners Hospitals for Children web site and find out the Shriners Hospital in your area and their contact information. Now I'd like to discuss a little bit about health departments and what kind of health care resources are available to families at the health department.
A. The Board of Public Health Clinics are available in numerous different locations. They do have an information and location number here in Chicago at 312-747-9884. And families can call to obtain information related to that. They provide services such as routine pediatric care, immunizations, different types of clinic care. They do not always see children with special health care needs. So you would need to call the Public Health Clinic to determine if they would. And that's because based on different immunization shots or care that would be needed, a specialist would typically need to be involved.
Q. But something important for families to know about for all their children that health departments across the country whether it's a city or county or regional health department may be able to provide checkups, shots, some of them have dental care, some of them have car seat programs and other kinds of community services. What are the most important things and the most important advice you would give to families about focusing on getting help and paying medical bills for their childrens' special needs?
A. Well one thing I'd like to say is not to give up, to consistently just check all your resources all the time. It's hard a lot of times when you apply for things and you get turned down. You're not eligible and sometimes you really feel defeated and like there's no other place to go, but just keep plugging because there's so many programs out here. It's just that people don't come knocking on your door to tell you about them and you just have to go out and look for them and just talk to a lot of people. There's people out there that know different things. So I've gotten a lot of information that way. We are with ICHIP now and the Division of Specialized Care for Children.
Q. And one more program that we haven't mentioned yet, ICHIP which is Illinois' High Risk Health Insurance Pool. Can you tell us about that please, Barbara?
A. Yes. After exhausting all our possibilities for insurance for Colleen, we did have to go through the ICHIP plan which is the Illinois Comprehensive Health Insurance Plan. I did apply for it in September and I did call and get the application sent to us. I filled out the application in October and then it took them about 30 days to send back a letter saying that we are eligible. Colleen and I are both on the program because I have been diagnosed with something so I couldn't get health insurance either. So we are both on the program. What they did was they sent the application to us. They sent the information booklets. They sent a list of doctors that we can go to, which almost all our doctors were already on the program, all the specialty doctors. They sent us a letter back telling us what the premium is. With Colleen, her premium was $612 quarterly. It's based on being female and her age. Mine the same thing. Mine is $1147 quarterly. And that's due to my age and different things like that so it's costly. Plus my husband and my other two daughters had to get another policy. So right now as it is, it's about a thousand dollars a month that we're dishing out for health insurance. But it's an answer for us right now at this time.
Q. Well I really appreciate your sharing this important information with us, Barbara, and for all of us to know that some but not all states have chosen to have high risk pools they're called for people whose medical problems prevent them from getting other kinds of health insurance. When you look into your state resources, you can ask in your state if they have a program like that. And Diane, could you please summarize what you think are the most important things that families need to know about paying medical bills and getting help for their children with special needs.
A. Just to add on the ICHIP program. It's important to recognize that that is not an insurance company and it's not an entitlement or welfare program. So you have to be eligible for that program and ICHIP determines if they have room available for you. So it's not something that they automatically have to provide to a family. The funding is by premiums received by participants and partly by an appropriation from the state's general revenue fund. The premiums do vary based on gender, age, geographical area, deductible amount and type of plan. So it is very important to look at that as a resource and realize that it could be very high premium that he would be required to pay and that it is not a guaranteed resource, that it is something that you may be able to obtain and you may not.
Q. Okay I think there's one other thing that I would like to add from my own experience for. Some families will not be eligible for any of the programs that are funded by the government, but there is one more source of help available and that is through medical deductions on your federal income tax. The federal government allows families to deduct itemized documented medical deductions that are more than 7.5 percent of their income. And this is for people at all income levels who would have to pay taxes. No matter how small or how high your income is, It's very important to keep really careful records and it can include your mileage payment for the medical and disability costs that are not covered by any insurance or any other program. You do need to file a letter from the treating physician explaining about the child's diagnosis and recommendations and there is one of the parent training and information centers in Illinois. The Family Resource Center on Disabilities every year puts out a booklet called Tax Guide for Parents. You can obtain it by calling them at 312-939-3513 and it's a little booklet that's revised yearly as the Internal Revenue Service makes revisions. It explains to families what the laws are about medical deductions and it's real important to keep that in mind as well. Well i want to thank you Diane.
A. Just to summarize in terms of important things that a family should keep in mind. I always encourage families to connect with a resource person in the medical field, whether that is someone on the medical team or a social worker that can help coordinate everything involved and assist with different programs in the community. As was mentioned, it's very hard to know the different programs that are available, and this is a person that is in the community that would be able to tell you different resources. I also encourage parents to be very organized in terms of their information and to write down dates and names of who they speak to so that they have an accurate record of everything that has occurred, and I just encourage all parents to keep voicing the challenges and concerns related to children and health care because any of the programs are created from learning about these needs from the parents themselves.
Q. Diane, thank you very much. Barbara, thank you very much. I think you both really contributed a lot of wonderful information that will be helpful to many families and as families we know we need to connect with one another, share our information. We can be the best resource for each other. The people that we get to know along the way who are dedicated to helping our children and our families. So we're really grateful for your input. This concludes our webcast in the KMCO series on Managed Care and children with special health care needs. Thank you for logging on. We're really interested in your comments and questions about our webcasts and we invite you to contact us. You can reach us by e-mail at cade@uic.edu. Call us on the phone at 312-996-2233 or fax us at 312-413-0367. We're in Chicago, Illinois central time. We hope you've enjoyed this broadcast and you'll join us for the upcoming broadcasts. They're all scheduled for the fourth Wednesday of each month at 1:30 p.m. central standard time. Once we have aired a webcast for the first time, it will then be archived on our qcmc2 web site, and you can access it at any time. Our internet address is http://www.uic.edu/sph/cade/qcmc2. It features the archives webcasts, extensive lists of resources related to children with special health care needs and managed care, links to opportunities for on-line training and courses, information on our project staff and activities, a featured web site or resource of the month and much more.
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