Margaret: Sure. My--We are a TANF family. We--I am widowed. My son has special needs and we have been on TANF since he was born, or actually shortly after he was born. Conlan is now 15. He has cerebral palsy. He’s autistic. He has asthma and allergies and he’s a multiple disabled child who needs a lot of medical, Medicaid disciplines. He needs a whole lot, and so I am home with my son, and thankfully because of that he’s doing very, very, well.

Faye: And how did you first find out about Medicaid, Margaret?

Margaret: I think I kind of learned that I was on it gradually, because when I had Conlan, I had been in the workforce, but I was--one of those kind of an arrogance about people that didn’t have health insurance, and I ended up with a very premature child and could not work and I actually at the hospital that he was born in applied for Medicaid for me. So you know, so that their monetary needs could be met. So--but I didn’t really learn I was on Medicaid for probably months afterwards.

Faye: How long was Conlan in the hospital for after he was born?

Margaret: Conlan was born at two pounds and five ounces on June 3^rd, and he was released after two months, weighing four pounds and five ounces. So, he was in the hospital for two months. He came home on a heart-lung monitor and all kinds of respiratory medication.

Faye: Okay. So he’s really been through a lot?

Margaret: He’s been through the mill and he’s wonderful.

Faye: And you say Conlan is 15 now?

Margaret: Conlan is 15 now.

Faye: Is he in high school?

Margaret: He is in high school. He’s in his first year of high school and actually doing very, very well. He does have a fulltime attendant, which he needs in high school to get around so that he--just in the last few years we just started to learn how to walk and with the autism, he’s very socially disengaged. So, he has a fulltime attendant who will take his arm if he needs it and will keep him on track socially and keeps him on track in the classroom. So he’s really, really, doing very, very well in school with the assistance that he has.

Faye: I’m really glad to hear that, because I don’t think I’ve seen Conlan since he was in kindergarten.

Margaret: No, no you haven’t.

Faye: That was a while ago. I still have a picture of him in my mind as a very little boy. Now, Margaret, do you have health insurance or are you also covered by Medicaid?

Margaret: Medicaid covers me because I’m a TANF recipient. I have health insurance coverage under Medicaid.

Faye: And does Conlan participate in any other government programs for children with special needs.

Margaret: Conlan receives SSI.

Faye: Okay.

Margaret: Because of supplementary disability income and that supplements--Conlan’s father is dead--and he receives, I think it’s called SSA, I am so bad with these things. So, he receives his father’s survivor benefits and that’s supplemented by SSI.

Faye: I see. And does he participate in any government programs for children from low-income families?

Margaret: No.

Faye: And I have a question for you, how do you conduct your business on his behalf with the State Medicaid agency? Do you do it in person, on the phone, at the hospital where he goes for his medical care or in some other way?

Margaret: Well, I’m very, very fortunate in that Conlan’s care is coordinated through the University of Chicago and they pretty much do everything. When problems have arisen and I have tried to contact the Medicaid--well first of all it used to be they just had an 800 number that nobody answered. When I did get through, I was told that they were not allowed to speak to parents. At that time, when I did have problems, I would have the physical therapist from whatever school he was in, at that point I think it was Christopher School, contacted them and they were quite willing to speak to the physical therapist and straighten out the problem, but they were not willing to speak to the parent.

Faye: That must have been really frustrating.

Margaret: I thought it was hilarious to tell you the truth, you know, because, you know, I had worked up until Conlan was born. I was, you know, in a business environment. If you had a problem, you pick up the phone. You know that there’s a mistake being made, somebody can trace it, and that’s the end of it. So, for this kind of hullabaloo, an error, I just found so unbelievable.

Faye: Do you ever have to go to their office?

Margaret: I don’t have to go to Medicaid office. I have to requalify for TANF benefits, and once a year I have to requalify for--requalify Conlan for his SSI benefits. So, because we’re a tiny family and he is on SSI our requalification for Medicaid does not--actually goes to the Social Security office; established by TANF.

Faye: Now does Conlan have a medical home, meaning, one place where he goes for all his medical care and doctor, or another person who coordinates his care?

Margaret: He has a primary medical home, which is the University of Chicago, but apart from that, I always try to establish something at a local clinic in case something comes up.

Faye: And how has that worked out?

Margaret: That’s actually worked out quite well and things like, you know, for things like he can’t get into high school because he needs to have a tetanus shot and there’s no serum available then, you know, the local clinic was the best place for me to go down and get a statement that the serum wasn’t available please enter him in school. You know, for stuff like that--it’s a solution. And at one point, I lived closer to another hospital than the University of Chicago. That hospital is no longer there, so for emergencies with his breathing I just had to grab him and run across the street. So, I had established some records there, but I was just very fortunate in where I lived that I was able to do those things, but his primary care is at the University of Chicago.

Faye: Okay. And do you have a case manager or service coordinator for him there?

Margaret: No, I do that myself.

Faye: Okay.

Margaret: Actually, not totally by myself, you know because his doctor really is kind of a case manager, too. He coordinates the psychiatrist, the dental office, the orthopedics, asthmatics, and pediatrics. They pretty much coordinate it for me. I just have to agree to what he needs. So, again I’m very, very fortunate in that.

Faye: Do you feel Conlan’s needs are adequately met by his Medicaid coverage?

Margaret: Yes, they are. They are because he is a special needs child and as you know--I don’t know how many people know what that means, but he has what is called a 93 medical card, which provides more benefits for a disabled child than it would for a normal TANF recipient. I don’t know if Conlan’s needs would be adequately met if we did not live where we lived and had not been so established in the medical community that he’s in. I think that might have been a whole lot harder. For us it does very, very well.

Faye: Well, I know University of Chicago is one of the, you know, the world famous medical centers and they have lots of specialty care. Now, has he ever experienced any gaps in his coverage and if so what was the reason for that?

Margaret: Conlan experienced one severe gap in his coverage.

Faye: And can you tell us about that?

Margaret: I moved--you know I’m not going to give you the exact year, because it’s been about five years ago, but I had moved and because I have no other children, Conlan’s case number was a different number and--my address change was put through, but Conlan’s was not put through, and for six months I’d go--I’d call or go down and say, please change, I haven’t received his medical card, please change the address and I would receive a temporary card and then Conlan was scheduled for some severe orthopedic surgery and during the middle of that I received notification that his case was canceled because he did not appear for an interview at the local office and it took quite a bit to get that reinstated and it was just--it’s totally an example of not being able to coordinate things over the telephone or even in person.

Faye: Well, Margaret, I’m really sorry that you and your son had to go through that. To let our audience know, that Illinois is a state where the Medicaid recipient cards are issued on a monthly basis and each month you get a new card that provides your coverage. I know that’s not the same in every state. Now, do you feel the TANF program is receptive to Conlan’s special needs and your role in caring for him?

Margaret: The TANF program was very receptive to Conlan’s special needs up until the welfare reform laws. The State of Illinois recently has become a little more receptive to people who are required at home, but it’s still a struggle to maintain his benefits now, because the onus from the state is this going back to work. I have an exception to the mandated work order, and as of July 23^rd there is this, not state law, it’s an administrative policy memorandum, which states that people who are required at home or designated as required at home, will no longer be on the time clock. The time clock for the five-year maximum stops, but at the moment I seem to still have to go through an intensive case study every month to prove that I am required at home and this is just in order to keep--this doesn’t actually affect Conlan’s SSI or his SSDI, but it does affect the $212.00 a month that I get to maintain Conlan. So, I think that the state is actually trying to be receptive to our needs, but right now their pendulum is swinging and they’re very intense, they’re very intrusive and they’re very, very stressful.

Faye: Wel,l again you’ve touched upon something that is a major national issue, and as we know for families who have children with special health care needs, their care, care coordination taking care of all of their services, takes up a lot of time and there are few community resources such as child care, particularly for children with multiple disabilities. They’re extremely difficult to access for any family now. A lot of the supports that are needed are not there so that’s something we’re going to be continuing to discuss. Now, I have a few more questions for you about Conlan’s services under Medicaid. Does he use the transportation services?

Margaret: You know, he used to. I no longer use those, because he was always late for appointments and, you know, a child with special needs doesn’t have clinic appointments where you sit there for hours. They have specialized appointments so we just--we kind of missed too many appointments.

Faye: And so how do you access transportation now?

Margaret: I was very, very fortunate. About four years ago, I lived in a home, and my rent was being the gardener [paid my rent]; and the lady who owned the home was buying a new car and gave Conlan and I her van.

Faye: Wow.

Margaret: So, I’ve been just very, very, very fortunate in that at that point I was able to drop that service and make appointments on time and I can’t tell you what a gift that was.

Faye: That’s wonderful. And does he get dental care covered by Medicaid?

Margaret: Yes, he does.

Faye: And how has that worked out?

Margaret: That has actually worked out very well. He has an upcoming appointment. He has extra sets of molars, which are pushing his teeth. So through regular dental care he’s been very, very well. I’ll now see what they’ll do as far as the orthodontics are concerned. So, I really don’t know yet. He does need some orthodontics and I’m very, very hopeful that we’ll be able to get that taken care.

Faye: And have you ever had trouble finding dentists who accept his Medicaid card?

Margaret: No, because his dental care is also through the University of Chicago.

Faye: I see.

Margaret: So, and they--the last time I had his teeth cleaned--I had it done at a local clinic. I didn’t have a problem with him .

Faye: And how did Conlan do with the relating to the dentist and getting in the chair and everything?

Margaret: Conlan did very, very well, he’s--as you know, that you spend a lot of time preparing your child for these appointments and what will happen to them and you have to very, very honest about whether or not there’s going to be some pain involved or not, but he went in knowing he wanted white teeth and he was prepared to except what was entailed in that so--

Faye: Well, it sounds like you’re doing an excellent job of helping cope with all of this.

Margaret: Well thank you. I think I learned a lot of those skills from you and from Charlotte.

Faye: Just so our listeners know, Margaret and I met a dozen years ago at the Family Resource Center on Disabilities. One of the Parent Training and Information centers in Chicago, and with the Family Support Project. So, we do go back a ways. As I said, Conlan was a very little boy then. And is there anything that you’d like to change about the Medicaid coverage that you son gets?

Margaret: Well, first I’d like to see them not cut so much, because this latest cut, I think, may affect us. You know prior cuts have affected many people on--

Faye: --You’re referring to the state budget cuts?

Margaret: I’m referring to the state budget cuts, the ones that were announced recently. I mean, as you know more and more providers are unwilling to accept Medicaid patients. First of all because they don’t get the same kind of money that they would for a private patient or other insurance and there are some very, very stringent rules that ties to it. Those have affected us as far as his psychiatric care went, because as you know the University of Chicago is a teaching hospital, and we have been very, very fortunate in the past where Conlan has had some treatment from graduate students. Now, I have found that the doctors were very, very, very concerned about matching the child up to someone who would match them. I have found that the graduate students were so very meticulous that--and they build really good relationships with the children, but with the cuts a few years ago the graduate students weren’t allowed to treat the children when the doctors didn’t have time to take on this kind of case load and now with the more recent cuts, I think there’s going to be a lot less children get a lot less good care.

Faye: Margaret, are you aware of your son’s rights under EPSDT and how did you find out about his rights?

Margaret: Okay. Refresh me E--

Faye: This is the federal law it stands for Early Period Screening Diagnosis and Treatment, which means whatever the doctor prescribes for the child it must be covered by the Medicaid program.

Margaret: No, actually I wasn’t aware of that.

Faye: Okay. And what kind of consumer information and education have you received from the Medicaid agency in our state?

Margaret: I receive correspondence ever so often reminding me that its time for a well child checkup and apart from that I just receive correspondence from HMOs wanting to take over his coverage. Apart from that info I receive nothing.

Faye: Okay. And have you received any type of service coordination assistance from the Medicaid agency?

Margaret: No.

Faye: I see. And tell us about what you have to go through to get the Medicaid agency to answer any of your questions or go through the redetermination process.

Margaret: Well, like I say the redetermination process for Conlan is usually based on my redetermination for TANF. As far as his eligibility for SSI, which makes him eligible for the Medicaid, you know, I go down and they ask me for my rental receipts or anything else. They’ve actually been very, very good with me. I haven’t really had any problems. Nobody’s really--I think one time a few years ago they wanted me to keep receipts, because I’m the recipient for Conlan. They wanted me to keep receipts on everything I spend for him and I said, my goodness our family is dealing with six hundred dollars a month, you know we don’t keep those kind of receipts for paying rent, utilities and everything else. Our amounts are going to bleed over. So, I was never asked again after that.

Faye: Okay. Now I have some questions for Jeanne. I know Campaign for Better Health Care is a unique agency that we’re fortunate to have in Illinois, but tell us a little bit about the Campaign for Better Health Care and how you’re involved with Medicaid.

Jean: Hi Faye:

Faye: Hi Jeanne.

Jean: The Campaign for Better Health Care is a statewide nonprofit organization. We have offices in Champagne and in Chicago, and the primary purpose, the mission of it is to get health coverage for everyone and so in order to do that we try various things--including promoting universal health care, but also looking at getting more people enrolled legitimately and so we have several programs that are going on both dealing with younger children and the KidCare which is the SCHIP program in Illinois as well as Medicare and managed care and hospital convergences and I guess a "watch dog," to see what’s going on in the state and what kind of systems need to be improved to address some of the issues that Margaret’s talked about and to that end we have a great deal of support. We have a large number of organizational members as well as individual members and we do have some grants from national foundations that are interested in the same thing, which is outreach and again I’ll talk about children specifically right now--about outreach and children who are eligible for Medicaid or KidCare are signed up, how easy is it to access quality services for their particular needs including children with special health care.

Faye: And could you tell us a little bit about the children’s programs at the Campaign.

Jean: The children’s program at the Campaign involves really two programs at this time. One of them is a Robert Woods Johnson pilot project for covering kids which is outreach, that although most of the public health clinics in counties and most of the Department of Human Services in the counties are aware of the KidCare program and the Medicaid program. Their number one was a general under-enrollment of Medicaid, even when the new program came along and there was an attempt made to make people more aware of these programs and to remove them from the stigma of welfare. We’re trying to look at them now and convey to Illinoisans, that this is a health assistance program, so that families who are coming off of TANF and finding jobs that either don’t offer insurance or the insurance premiums or co-payments are too high for their family to manage, have an option to have the children insured through this program. So the one big focus has been primarily on outreach.

The other big children’s focus, as I said, has been on access and quality, and one of the groups that we were very concerned about were the children with special health care needs. And as we looked at other states with other programs for children with special health care we find that Illinois has some unique areas that make it more difficult for particular kinds of children with special health care needs, to access help than it does in other states. I would say Margaret has been very fortunate in being able to access the University of Chicago for her health care needs, and that is not typical throughout the state. It’s much more difficult to find the specialist that will take the card that will help with the management because there is no official management and so as we work in these two areas we’ve been trying to work with the coordinating state agencies, the Department of Public Aid as well as the Department of Human Services to get rid of some of the barriers that keep people from accessing this particular program even though they’re eligible and to promote health care among providers and to kind of follow up and see what recommendations we would make regarding some of these specialized issues. Again, including children with special health care needs. Another one is dental health, and again it sounds like Margaret has been fortunate, much more fortunate than most, and we’re beginning to look at the issues of mental health access through these two programs, Medicaid and KidCare. So, we’ve tried to kind of dovetail our outreach efforts throughout the state with finding out how it really works once people are enrolled.

Faye: Well, it sounds like it’s a very comprehensive approach to a really complicated problem. Could you give us some examples of things that families have been telling you about Medicaid coverage for their children with special health care needs?

Jeanne: Well, there are a couple of problems. Although, the coverage is very comprehensive and at first glance looks like it’s excellent. In fact, it includes some categories of care that only children with special health needs would probably access, not the typical child, and for that we’re very grateful, but some of those things that are problematic in the program, are number one: transportation. As Margaret pointed out, Medicaid will pay for transportation, but there has to be a licensure of the driver and as she pointed out, sometimes those make you late or sometimes they cancel and you have no other recourse to get to your visit for your child. They need 24-hour notice in order to approve the driver, in order to approve the reimbursement and so those are frustrating for parents.

Also another area that’s problematic in this area is the number of reimbursements by providers in a single day that currently the Medicaid rules--and KidCare is a look-alike, so it follows most of these rules--is that only one provider can receive reimbursements in a day. For a typical child that may be fine, but for a child with multiple needs going to a specialized clinic or hospital facility that means that only one provider can see them a day and that may mean that they have to make more appointments on different days which means more lost work or more transportation problems. The Bureau Chief of KidCare says she’s looking into that. She doesn’t understand why that limitation, but that certainly has been a frustration for families with children with multiple health care needs. And I’m trying to think if there was something else.

The other issue that’s going on in Illinois, is that for children who may have been eligible for the Title V program, which is the federal funding program that is supposed to assist families with special health care needs above and beyond what is provided by their Medicaid and their SCHIP or in Illinois’s case KidCare program, and they allowed higher income levels for these children and they had higher reimbursement rates probably recognizing that specialty care was needed and reimbursement needed to be cognitive of that. What Illinois has done is now required that every child who applies to this Title V program called the Division of Specialized Care for Children (DSCC) in Illinois, is now required to make an application to KidCare and if they are found eligible for KidCare then they must seek all of their services through KidCare. The difference--one of the differences- is that the reimbursement rates are lower for KidCare than they are for the Division of Specialized Care for Children, and so they may have a harder time finding a specialist willing to take them under the lower reimbursement rate. And the other dilemma in Illinois is that this Division of Specialized Care does not serve all medical needs of children with special health care. It’s very restricted, primarily orthopedic and neurological, autism would not fall under that, and asthma would not and so, there’s been some problems on trying to find ways that we can get more children with special health care needs covered either under our Title 21, our SCHIP program or to find some way to expand the services of the Division of Specialized Care to include asthmatics or diabetics or medically fragile children who are currently not eligible.

Faye: And so there are a lot of challenges in this state, as in many other states, but I’m glad that your organization is tracking this and working with the families and the providers to move forward. It’s extremely complicated. So, you're saying, you do see a difference between the coverage of children who are eligible for Title V and those were not eligible for Title V program. We know that in our state, the broad group of children with developmental disabilities alone, without medical disabilities, are not eligible for the Title V program. again, this varies by state about what is the coverage and what are the benefits and Medicaid eligibility now, you know, is based on family income and that is more uniform across states than it used to be since the Title 21 projects--program started; is that correct Jeanne?

Jeanne: Medicaid is probably fairly consistent across states, but the SCHIP program--the second program that in Illinois is called KidCare, has wide variations in state income levels, and also wide variations on the programs available for children with special health care needs. Many states identify those and on their application and then provide them special services outside the range of their normal Medicaid/SCHIP program. Illinois does not. We don’t identify, we don’t track and again other than the Title V, there aren’t easily available solutions to the problems with the families that don’t qualify for Title V.

Faye: Do families with children with special health care needs on Medicaid, do they receive service coordination assistance from the Medicaid agency?

Jean: No. There is no coordination in Medicaid or the SCHIP program; and one of the things we know, again from Title V, is that the parents appreciate the coordination aspect of it. You know as much as they do it they’re getting the medical care they need for their children, but families with special health care needs have many more coordination difficulties than, and again I’ll use the word, typical child, not unkindly, but you know based on the demographics and how numbers were figured and what they were expecting for their major clientele under this program. And coordination becomes a huge frustration for families in Illinois unless there is a primary care provider or a medical home that is willing to do that. Some of them say that the only time they begin to see any coordination at all is by the time their children get into school and because of the requirements for--especially if they’re in a special ed program--and that the requirements for that include a lot of coordination that they weren’t receiving previously, but again this is in an education setting and not in the medical setting and not an early age.

Faye: That’s interesting. Can you talk a little bit about consumer education and advocacy assistance for families who have children with special needs covered by Medicaid.

Jean: Well currently there’s no direct outreach to these families, again, because they’re not identified. The application does not ask any questions that would help the state identify families with children with special health care needs and therefore has no specific outreach effort to those families. In the client handbook, which is getting ready to be dispersed, there is not a mention of children with special health care needs and that was quite literally as a result of the work that our group has been doing. It’s like you don’t even talk about, so families wouldn’t know any of their rights under Medicaid or CHIP if they have a children with special health care needs. So, that is being added and again, things that we are pushing is--are--they are multiple are to change the things like some sort of coordination or reimbursement rates that reflect the specialized nature of the care needed by some of these children, and to improve the types of disabilities that are coordinated for families with slightly higher income levels and so we still do have a lot of work to do, but coordination definitely is an issue among families with special health care needs.

Faye: Now Margaret, I’d just like to ask you were you aware that the department was preparing a client education handbook? Conlan is 15, did you ever receive a client education handbook in the past 15 years?

Margaret: No. I never did, but you know what, while you’re on here I’d like to touch on a couple points that Jeanne has made, because I think I said to you before we had this broadcast, but I am not a typical recipient and there are two reasons for that. One is that I live close to the hospitals and Conlan was born into the Hyde Park community, which is the campus area for the University of Chicago. So, we were established in that community and we were known throughout the community and so I have been very, very fortunate in that community opened their arms to me and that is the point that needs to be made very, very clear that I am not typical. The other thing is that the coordinations through the University of Chicago--Jeanne is absolutely right--while the specialty clinic meets on a Monday or Thursday, Conlan can only see one discipline at a time, but the hospital was very, very good at making sure that his appointments for different disciplines are on different dates. And another thing and I’m sure that you’re aware of that Faye, you’ve been through these hospitals, because we live in the city we see a lot of down-state patients being sent in for specialty consultations. Their access to that kind of health care is very, very limited, and when they come for one discipline they have to go back down-state and come back in for another discipline and my heart really goes out to those people--really, really does, but I’m sorry to interject with you Jeanne, but I just wanted to really push that point across that we are not typical.

Jeanne: Thank you, yeah.

Faye: I’d like to add that, you know my daughter is on Medicaid now, as an adult who is a Social Security recipient. but even in the metropolitan area, when her dentist retired, it took me six months to find a dentist for her. There are some significant issues--I know the Campaign is involved with families who live in rural areas who sometimes have to travel like six to eight hours to reach specialty care for their children.

Jeanne: Yes, they generally have to travel to a metropolitan area to a center or a special group that will accept the Medicaid or KidCare card and so the distance can be horrendous. We have some reciprocation with Missouri and Indiana and so people that live on those borders may not have to travel as far, but people in the center of the state or lower down state may have to travel huge distances and for them, you know, traveling multiple hours to have an appointment and then you have the option of traveling back and then traveling that distance again, because of the lack of being able to seek reimbursement for more than one provider, and again transportation is provided, but no motel rooms, no food allotment, nothing that would allow them to even stay in the area to which they traveled and do an appointment on the next day. That wouldn’t be our first choice. Our first choice would be that they can schedule as many as they can schedule on a single day, without having to be concerned about providers not being reimbursed. So, we’re working very hard with the Department of Public Aid on that particular issue right now.

Faye: Well, I’m really happy to hear that. Now we’re getting ready to wrap up so I’d like to ask each of you about your recommendations. Margaret, what advice would you like to give to providers and policy makers about Medicaid coverage for children with special health care needs?

Margaret: I'll tell you one thing I'd would like to see them do: if you do not receive payment or notification from Medicaid or public aid, please contact the parents. Very often it's a clerical error. I've had it happen where a wrong number, sombody mistyped the common id number, and I didn't hear about it until my son was in collections. And that was actually the City of Chicago ambulance van. The attorenye for the city siad it was it's my responsiblity to make sure the appropriate paperwork went through and we got out of thet one bny sayint that Conmland frequent flyer from that facility there are a lot of clerical errors that can really put a person in my position into a whoel manner of studpoid bureacucry so if there is a probelmeconact the parent

Faye: Do yhou have some specific advice TANF for providers what advice would you like to give to health care providers and to policy makers about Medicaid coverage for children with special health care needs? You’re an expert you’ve been dealing with this for 15 years now.

Margaret: Yes, but like I say I’ve been very, very fortunate. I’ll tell you one thing I would like to see them do: if you do not receive payment notification from Medicaid or public aid please contact the parent. Very often it’s a clerical error. I’ve had it happen where a wrong number, where someone mistyped the common ID number and I didn’t hear about it until I was told--my son actually was in collections and that was actually the City of Chicago ambulance service. The attorney for the city had said it’s my responsibility to make sure that the appropriate paperwork went through. We all only kind of got out of that one because I had said that Conlan was a "frequent flyer" at that facility, and they should have adequate records. So, there are a lot of clerical errors that can really put a person in my position into just a whole manner of stupid bureaucracy when it’s not necessary. So, if there is problem contact the parent immediately.

Faye: And do you have some specific advice for the people who run the TANF program related to families who have children with special needs?

Margaret: Essentially, just to reiterate what Jean has been saying, you know that multiple discipline children, but with access to a multiple discipline clinic wouldn’t be coming, back and back and back. Nor should people be responsible to transport people from down state numerous occasions, when you can reimburse the providers for more than one visit on the same day. And also please stop cutting these things.

Jean: Ditto, Margaret! I agree. Yeah, it does present some interesting challenges now as we hear of the budget cuts and who that is going to pact and what priority we can bring to bring on the specific problem of children with special health care needs. You know it’s an area that seems to be low on the radar scale right now and there are other organizations like the Campaign that are trying to work for more legislative understanding and more coordination and I guess, you know, we all have to work together and advocate for this or its not going to become a reality.

Margaret: I know we’re rapidly becoming the poverty industry.

Jeanne: Yes. Well, even--

Margaret:--I was being facetious there. I’m sorry. My apologies to anyone on that because we have some really, really wonderful organizations that are coordinating, as you know Jeanne and with all the energy that puts a bear on it, things will change. We just need the people that are in need of those services to chime in and give us the documentation that we require to take it elsewhere and to go forward and say look we are a force and we are people. We’re individuals. We are families. We are just not low on the totem pole statistical numbers. Our parents are some of the most courageous people you’ll ever meet in your life and they deserve your understanding and they deserve your respect and they deserve your assistant.

Faye: I’d like to ask each of you what advice you’d like to give to families about Medicaid coverage for children with special health care needs.

Jean: First, of all I would like to encourage any family that is economically eligible to sign up for it. We’re still kind of dealing with this idea that Medicaid is only a welfare program and it is not. It’s designed to help families get coverage for their children because we know that healthier children are more successful and relieves a burden and concern for parents about what if something catastrophic happens to my child or what if there’s an insurance bill or an accident or whatever. This is not a welfare program and neither is the SCHIP. So, if you even remotely think that you’re eligible for it that you should apply. It’s a free application and that there is an appeal process and again that’s in the handbook, but since the handbook hasn’t been put in anyone’s hand, as Margaret has mentioned, mistakes are made and the intent of the appeal process is to review what’s been turned in, find those errors, and make the correction so the family has the coverage that they’re entitle to. So, I think any family advocacy to stay on this issue. To contact organizations that are working on behalf of these issues. If you need support, or help or legal guidance or you no places to go that there are those like the Campaign for Better Health Care around and call those numbers.

Faye: Just to let our audience to know we will have a link on the web site to the Campaign for Better Health Care, as well as national resources from the government and from advocacy and consumer organizations about Medicaid and children with special needs and you’ll be able to find state specific information as well as national information and other people who are working on all these issues. And Margaret, what advice do you have for families about Medicaid for children with special health care needs?

Margaret: I think Jeanne has pretty well covered that. Find out if you’re eligible. If you disagree, appeal and get in contact with the organization that are dealing with poverty issues. They are coordinating--there are many of them out there. There’s Midwest Partnership. There’s National Center for Poverty Law, which is--actually have a web site that is the most comprehensive legislation web site you’ll find and I know that Faye, you mentioned that you may linking up with that site.

Faye: We will have a link to that program also and to let everyone know, that for children with special health care needs, for those children who are eligible, Medicaid is an extremely valuable benefit with comprehensive coverage for health care services and its important for all eligible children to enroll and we need to continue to work together to improve coverage and information for families, providers, et cetera. Does anyone else have any closing advice?

Jeanne: I know this is really hard for parents, but you have to the best that you can for your child and it’s a burden that those of us without children with special health care needs have a hard time understanding and again I’m sure many organizations will offer you the kind of support and advocacy skills that you may need to do this, but its only through you, that legislators are going to recognize what kind of a problem exists in Illinois.

Margaret: Yes, and find out who your legislative representatives are and write to them. Have your families write to them. Have your neighbors write to them. Have anyone who has any understanding of what you’re going through. Write to them.

Jean: Or take your child in and visit with them.

Margaret: Absolutely. Your alderman, your representative, your local council, they’re very happy to jump on it. I’ve had a lot of help from alderman. I’ve had a tremendous amount of health from Representative Barbara Curry and State Senator Obama. They are very concerned, ready to jump on. They need documentation to take to the legislative. They need your written word to take and say this is what I’m receiving from my constituents and they will run with it. They’re fabulous.