YOUTH
WITH SPECIAL HEALTH CARE NEEDS: HEALTHY & READY TO WORK
Q&A / Discussion
Tom Gloss
Are you all familiar with Olmstead, the court decision that people should be allowed to live in the most accessible part of the community? They shouldn't be institutionalized. I'm not an expert in this, but it is my understanding that the president signed an executive order this past week that said that Olmstead should be implemented as quickly as possible and I believe that there is money attached to that. Do you know more?
Patti Hackett
Right. The latter part of February, during the National Governors Association, each governor was personally handed a letter by President Bush announcing this as part of his New Freedom Initiative, that this would fall under the criteria. Last week Tommy Thompson, the new secretary for HHS, convened the very first conference on this called Independent Choices. I think they thought this was going to be a launch of Ready-to-Roll. But what they found in this room of 120 people, who experienced a variety of independent choices, was there's a little bit more to go in consensus building.
The grant was announced the end of March with a due date of July. The rumor mill throughout our troops is that July date will be pushed to September. So, there are going to be state systems grants addressing this. But in the state of Florida, Glen is not considered disabled because he does not meet developmental disability’s limited criteria. So we have a way to go.
Audience Comment:
Recently we were informed that HCFA, now CMMSS, was going to charge them copyright for that.
We have some preliminary indication, that if a child has an IEP, under IDEA, Medicaid kicks in if they are on Medicaid [meaning that the school district can bill Medicaid and get reimbursed for things like therapies and nursing services]. 504 and, you are going to have to help me here, had a whole different scenario. It is being interpreted that Medicaid does not need to cover that. [Meaning that children who have only 504 Health Plans and not IEPS, then the school district can’t bill Medicaid for services that they receive. These are usually children with chronic illnesses, but no special education needs.] Can you clarify that?
Patti Hackett
That's accurate. Bob, do you want to pitch in on this one, this is one of your areas? Why? Correct me on any spot that I'm wrong. 504 was really known in the early 70's as the ramp that got you in the post office, but it did a lot more than that. It said that any time Federal funds are used, there is supposed to be parity so therefore, when Glen got to school and one of the people at the Sirk Center said to me: "don't tell anybody who told you about this law, but this is the law that allowed Glen to go to school." So I really looked at this law.
It will let him have extended time tests, it will let him have field trips that wouldn't have any jeopardy. It will let him have the bus with adaptive services. What it didn't provide was the funding stream to go with it. It's been like an unfunded mandate for a long time. It's a civil right. Then it grew into ADA. I have a problem with this Medicaid connection sometimes, too, because schools only have so much. So my counter to them is: "what is in your superintendent's discretionary funds?"
Tom Gloss
And I put it back to this collaboration issue. These programs are funded. They have funding streams sometimes with limitations. But sometimes there is real overlap. And if you can get all the people in the room together dealing with this individual or family's problem, they find a way to solve it. It's if you get the Medicaid people and the education people and the Title V people all to sit down and talk about it together, there's probably a way.
Patti Hackett
Well there's an FTE issue too. When I taught in Orlando, if I had a segregated kid in a classroom of special ed [students], we drew down $15,000 for that student per year. As I integrated the student out, the FTE dropped down to $8500. Glen never drew any special FTE, and I remember Cincinnati's superintendent said: "I could get $500 a head if he got on the bus one day." So there's this other money issue that's a big problem. The 504 doesn't come with matching money. That's the big issue. What kind of service were you looking for, Phyllis?
Audience Comment
I think that the issue had to do with, with respect to IDEA and Medicaid, and this first pay or not pay thing and whether Medicaid actually pays for some of those services. But then when you got two people who were covered under 504, it wasn't even who is first pay, because Medicaid did not would not pay, was not obligated to pay.
Patti Hackett
Right. And then you get into: should this child be identified for a little bit, or not, and then if they are, then should their learning environment be restrictive or not.
Tom Gloss
Any other questions?
Patti Hackett
So, when you have an insurance policy, you are supposed to get a certificate, and then you can take that to your next insurance policy [issuer] and say I've been covered for the amount for this for 18 months, and therefore I don't have a waiting period.
But, what I'm concerned about, what I'm hearing from thr regionsl office at Maternal and Child Health is the HIPPA coding for the HIPPA bill. To me it is almost like a very quiet movement of DRGs coming at us, so we are going to have allowable codes of approval and if they are not HIPPA coded there's to be trouble trying to get things on that pre-existing.
I don't know how accurate that is. know Ohio has posed this question. Region Four is very concerned about this. Do you know anything about this?
Audience Comment
The last word I had was that there was going to be an accomodation for some of these unique coding structures....
It's not limiting...it's standardized. It doesn't means that services are going to be curtailed....
Tom Gloss
That issue of who's paying for the transition time if a child needs to see both a pediatrican and an internal medicine doc is one that comes up. Families talk about that. Also, things that the kids have told us. They may be 12, and the doctor is talking to the parents, but the kid has been living with this their whole life, they know what all the words mean, they're in the room, they don't feel like the doctor is talking over their heads. So, that being cognizant of when it is appropriate to start talking to the kid directly--it's propably younger than you think. When it is appropriate to ask mom & dad not to come in the room yet, they can come in later. These are the kinds of issues that the youth talk to us about in terms of transitions.
Anything else that comes to mind?
Patti Hackett
Emergency Medical Plans--well, I think it is important to have them, but also having them available in a spot, so if they can't tell you where they are, they can be found. We'll take a look a transferable skills.
On Glen's third day of his admission, I called my mother, and couldn't get her, so the 83-year old neighbor went over and found her in the bathroom on the floor, but I an emergency medical plan on my mom.
So, I'm calling—and the lady couldn't call the life squad, it was too overwhelming for her to find my mother's body—so I'm calling the life squad from my son's bedside in ICU 45 miles away, and I share with them that there is an emergency plan that tells past history, even saying she is compliant, except that she is pain intolerant.
They said it was so helpful, and I even had the hospital call over [and say] that everyone should be coming in the door with this. It was a one-sheeter, it worked. Glen has a one-sheeter in his file folder and his back-pack, in case anything should ever happen. But I think these are skills that as we think about other populations, I'm thankful that MCHB taught me that about kids & I used it form mother.
Audience Comment
This is perhaps a question as well as a comment, and it doesn't relate specifically to adolescents or to anyone transitioning but it dawned on me in terms of the medical home piece. Our health care market has added another component that I think makes it equally challenging with respect to continuity of care and that is the hospitalist. I would like to hear particularly from the health care provider sector on what kind of challenges that particular arrangement has for people who have special health care needs.
Audience Comment
I can comment on that. There's a trend in this country where more and more of the in-patient care in pediatrics is provided by hospitalists, particularly in certain areas. And these are people that do nothing but take care of patients within the hospital. When you do that at a tertiary care center such as Children's it turns out that the majority of your kids indeed have quite a bit of complicated problems. They fall under special needs. The problem of the reimbursement system again comes out. There's no way that the reimbursement system will adequately support physicians to do that in an area where the children go and if you add on the responsibilities of teaching, which is unfunded, it is a very difficult job.
Ideally it makes a lot of sense. If it works though, it has to really be coordinated with the primary home of that child because the person who is the hospitalist does not provide that continuity. There are going to be different hospitalists at different times. So, it just puts a new element of I think it's a system that's developing. you've got to figure out a way like in all of these things to provide adequate reimbursement so that there is really time involved that you can make it work. And then how do you coordinate that with the overall system? It's not a cure all. It's just another trend that could make sense. If, when you are on the floor and you take care of a few of these children, your whole day could be consumed with three or four very complicated situations.
Audience Comment
It's a great question, and it's sort of like Lynda said before. If you see one Medicaid program, then you've seen one Medicaid program. If you've seen one hospitalist, you've seen one hospitalist. They are all different. There are a whole bunch of different models all over the country, and no one knows what they really do in any coordinated fashion. Most of them are populated by very bright, young ex-chief residents who are really hot to trot, and they take care of these really complex kids. They love doing it. They don't necessarily have good people skills and they sure as hell ain't never been in community practice.
Lynda Honberg
I wonder if we have any hospitalists in this room?
Audience Comment
I say this in front of hospitalists! So it's not a bad idea because most of the children in most academic health centers these days are very complicated kids with very complex lives, understood only by their parents.
Audience Comment
We've done with the MCO and some other coordinated programs for elders too, that I did with the community health centers is putting nurse partners on the ward who know our patient population and help coordinate between the primary care doctor and the specialists and can link with the discharge plan and really knows patients.
Audience Comment
It's a better idea. Right.
Audience Comment
Just what Jim says here. They are highly variable. It's not even defined as a specialty. There is developing a section of hospital care in the Academy of Pediatrics and it really is defined as somebody who devotes 70 percent of their time taking care of children in the hospital only. But beyond that, it's variable and there are all good things about it but also there are some services that maybe should not have general pediatric services and by hiring hospitalists they keep a program going that maybe shouldn't be there. For instance, a neurosurgeon that just does neurosurgery may hire a hospitalist to help take care of the medical aspects of it. But there's nothing else within the institution to provide all the uniform support. It's just something that's evolving and I was trying to put a more positive view on it.
Audience Comment
In Portland, Kaiser Northwest has a variation on the hospitalist theme in the sense that there are a cadre of the general pediatricians who rotate through the children's service and do essentially all the hospital care. But they also carry on practices so they will be on service and off service and it gives them a chance to supplement an income and make that more sustainable. It's also made more sustainable because KPNW has fairly sophisticated electronic medical records that has e-mail capabilities built in with it. There is good access to ready communication on what's going on with the child and to the records, both the admission and the discharge records which help. It provides that infrastructure to work.
Tom Gloss
Thanks a lot. Do we still have time?
Audience
Comment
There's another group called the leapfrog group that has begun developing some guidelines for large employers and putting pressure on health plans to contract only with hospitals, not just hospitalists. More that you have 24/7 in person coverage in the intensive care units but that begins to move out to the rest of the hospital particularly on the pediatrics side. We see more children coming into the hospital who need that type of care. If they don't need that, they probably don't need to be in the hospital. The outcomes are much better. It's been shown in hospitals who have that service. So I think that's a wave of the future and talking with our primary care physicians, they're beginning to develop that because they found that every time they leave the office, they lose money and it is better for one of their members to work with the hospital and hire somebody to do that. It's very hard to fund that source just through third party payment.
Audience Comment
Can I ask you a question that takes us in a different direction? The first part of the day, we talked about identifying children with chronic illness and significant problems and they talked about 15 to 18 percent. When we've gotten to this part, and we're talking about transitioning to adults, we now only talk about kids who are formally on disability. Are we? When you say Healthy Ready to Work, well I read the data, I read the insurance, I read the plans, and it’s all seeming to hook into children who are eligible for disability. Are we missing major parts of transition services for that other percentage of kids?
Tom Gloss
Yes. This population is so incredibly complex. You can have a child who is getting special education services and not eligible for SSI, okay. May or may not be eligible for Title V, may have a special health care need, may not be disabled, or maybe on any of those other things, maybe an SSI recipient but not in special ed.
Audience Comment
No I'm talking about services.
Tom Gloss
I understand, but it crosses all those venues, so that you've got this whole mixture of the population. But in our opinion, we are talking about the Title V definition of special health care needs that Merle covered this morning, very broad and that when those children or youth go through the Title V program, what happens to them? There should be some accountability or some recognition that there's a transition period, first to get to adult health care, secondly to make sure that they've accessed whatever education services are appropriate for them [and] that they are going as far in education as they desire to meet their potential, and then they are moving toward independence.
Patti Hackett
And when they get to that 18 age, it's more an ADA definition.
Audience Comment
Yes, but I guess I'm immediately moved to the practical. Those other kids fall off the insurance map. They have a disease and they don't have health insurance and I haven't heard any solutions about health care costs for kids that aren't disabled. Am I right? I'm asking if I've missed it.
Tom Gloss
...But you have a spectrum. If a kid isn't "disabled enough" to qualify for SSI and Medicaid, but the child has some sort of chronic need, the answer may be in Patti's creative lingo, you’d better be a student so that you have insurance that way, until you can get a job and get insurance that way. You need to find the paths that lead you to the insurance that will cover your needs. And it may or may not be Medicaid, it may or may not be an individual plan, it may or may not be a parent's plan that is continued under COBRA or whatever. But it's that teamwork to recognize what is the need and what are the variable avenues to get the coverage to meet those needs.
Audience Comment
It's still that very broad population. We didn't talk about the whole population today. We really did focus a little bit more. In reality, if we look at the statistics, special health care needs increase as children get older, not decrease. The kids we talked about today might be in better shape than some, who don't qualify for SSI. The example Jeff gave, a kid with diabetes turns 18 years old, and doesn't qualify for anything, doesn't get any insurance
We at some point have to begin address that group as well. Today we share concepts, but there are so many pieces of the pie as these kids get older, but we're still talking about a very broad population of children and youth.
Tom Gloss
Are they working? If they are not able to work, they should qualify for SSI. If they're not disabled, then why aren't they working? You see...Then it's a documentation issue. There should be a team approach to working with that individual to determine what those needs are and how we meet those needs. Is it vocational rehab issue? That with the right services and accommodations this young person could be working in spite of his conditions? Is it a health issue that they're not getting the right health care to deal with the medical condition? What is it?
It is the dropping off out of the system that, in my opinion, causes the problem. It's when the systems are brought together and someome is responsible for insuring that that young person is getting what's needed that takes them along that path that everyone else goes through.
That's what we're trying to do with the state model-that with the state model, have the Title V agency be responsible for pulling that all together.
Audience Comment
That reinforces a point Pat made about starting early in the process because there are a lot of goals and a lot of thinking and a lot of strategies that go into the process and working on this early will be much more helpful than waiting until the crash at the end....
Tom Gloss
...That's under special education, but if the child doesn't qualify for special education, they don't do it.
Lynda Honberg
One more comment.
Audience Comment
I think it's a great discussion and the concept that you have to start planning for transition early makes absolute sense. The thing that bothers me in terms of the gap is, if I see a picture of a disabled child or of an individual that can't work, that's easy to put that child into a categotey
But if you take a condition, such as asthma, or diabetes where the medication make that individual functional and they are employable, often the only alternative is to become income level sufficent to qualify for Medicaid So there is a big...
Patti Hackett
...But that's the traditional belief , but, I invite you to think: knowing that we have an invisible disablity, which has a high ticket end. If that person then receives skills that would provide them with high-level earnings to offset those medication issues, then we don't have a burden anymore.
We need to think higher, we need to think-where's that cliff, where's that plateau that allows this person to have a life that and still pay for things they need...
....Technology is going to be a big thing...and in the the President's New Freeedom Initative, there are huge tax credits for teleworking to allow for a flexible work environment. When you're well, you can go to work and when you're not well, and yo want to be productive, you can still be productive at home...
...One other, and then I want to end with a small story...
Audience Comment
I just wanted to ask a rhetorical or philosophical question. As we think about the initiatives and talk about a variety of areas, transition being one of them, to what extent do we shoot ourselves in the foot, or to put it another way, to what extent should we be framing those interventions for CSHCN in a broader sense? It occurs to me as we're talking that we should be talking to the 12 year old youngster with special health care needs about his or her health care needs. But we don't always do a good job of talking to any 12 year olds or 5 year olds or 6 year olds, or 7 year olds...
Patti Hackett
...You know, when I was a special ed teacher, and a kid came to me and said I don't feel well, I always asked them what's your baseline, what's your urine output, what's your respitory rate? I need to know your baseline, and why is it different.
They learn that. They learn it because I had the skills of taking my son into the classroom, but that's good health practice. We need to get back to good health practice to extend wellness periods...So 12-years old would be a piece of cake.
Audience Comment
I understand that, but I guess my point is that I worry a bit that we focus on children with disabilities, or even the broader categories, but we're still focusing on categories, rather than saying all of us as pediatricians should be talking to 12 year olds or our 7 year olds or our 5 year olds. We should be teaching, helping to teach folks, to be good advocates for their own health care, to know what they need to know.
Patti Hackett
...And it shouldn't be crisis, it should be long-term...
Audience Comment
The question is, I think we need to frame our initiatives and our thinking about CSHCN in the the broader sense, especially in the implementation process when thinking about practitioners in clinics, who are going to be seeing CSHCN right along with the other kids. They are all mixed together. We don't want to talk about doing non-categorical definition, and then categorize people.
Tom Gloss
Very good point. Good point. Patti, take it away.
Patti Hackett
Well I leave you with with a thought of Glen in ICU, intabated, in a different seting, going 13, 14 days. It's the second week of May. And the second week of May to some of you, is just the second week of May, it's just week after Mothers' Day. But to those of us in the racing field it is the The Pimlico, the second part, the second crown of the Triple Crown Races. So, this is a high event.
And Glen's fans-and Glen runs an electronic email list on picks so you can get daily picks, weekly picks, in case you ever want a fund-raiser in a different way....His fans heard that he was in the hospital, found out the hospital he was at, emailed the hospital, emailed good wishes, however "we need picks"
So, when the patient rep for North Florida in Gainesville came up, she said, "Once in a while we get emails for patients. We've never gotten an email for a patient in ICU, and nor have we done this bookie operation...
So, when we take a look at expanding normalization, to us, this was normal. Let's start looking at life as an equal ballpark. And if you do want picks, see Glen...
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End of Session