Meeting 8 Notes
January 25, 2008
Welcome to Child Health Advisory Committee Meeting!
Present: Dennis Cooley, Dick Morrissey, Shannon Cotsoradis, Tom Ostrander, Besty Hineman, Gerard Lozada, Mary Ann Shorman, Mary Baskett, Paul Getto, Vicki Hoffman, Mim Wilkey (phone), Rand O’Donnell (phone)
Guests, Staff: Julie Toon, Martha Hagen, Barbara Langner, Jennifer Church, Sue Bowden, Linda Kenney, Connie Satzler
Dick: Serving as Interim Director of Health. Have done this before, but still have some catching up to do. Interested in maintaining a better linkage with this committee.
Have had several conversations with the Secretary about priorities:
1. Immunize Kansas Kids Coalition - about to publish final report and recommendations. At that point, it will come back to the agency for implementation. Secretary is thinking this group can take the role of overseeing implementation. It is not a short-term process. There will likely be other groups helping with part of that, but this group can help it maintain a high visibility.
2. We would like to continue to have a focus on healthy schools. No specific structure to recommend. The Secretary wants to keep it on the list.
3. Prenatal/Perinatal Issues. Perhaps an assessment of research and implementing best practices based on this research. We could have a dialogue about how best to go about this. A lot of research out there. It is fairly widely recognized in legislatures as well. As a specific example, speaker of the house, Marvin Neufeld, is on a national group related to early childhood development; he is very involved in this. Overarching topic that could fit the role and linkage of this group.
Looking at ways to make sure function, activity of this committee is better tied with other internal mechanisms. Don’t know that we’ve done that as well as we could have.
In closing, we do see the functioning of this committee a high priority. We went back and reassessed the initial notion of creating this group. It still makes a lot of sense. It is still a good mix.
Paul: How can we get to improved children’s health without just having feel good legislation and unfunded mandates. Expecting the schools to find the money that isn’t there to do the work isn’t going to help either.
Dick: I understand. Maybe this comes back to the coordination issue. How do we better make those linkages.
Tom: You mentioned health schools – is it nutrition, Phys act, immunization, all of the above and more?
Dick: Think it’s all of the above. We tend to take it on related to individual issues, but they aren’t discrete.
*Expanded Newborn Screening Updates
Dick: Not exactly the last state to enact this, but close.
Had difficultly coming up with a good cost estimate. Received an appropriation that was significantly less than what it took. Much of this related to lab costs. Have revised implementation plan. Lab renovations are 99% accomplished. New equipment, lab folks are literally hooking machines up now. Now at the phase of beginning to run the testing on those machines, profiling. At some point, based on our ability to support this, will beginning pilot testing based on what is done in Kansas. Begins to improve the calibration of the equipment but of the protocol that is used to determine a positive or a presumptive test. It is a complex process of getting the right range so we are not creating unnecessary false positives. What is the range and how do you determine it?
At this point, expect will be online and ready to “turn the switch” on July 1st.
Other significant part of program is in Linda Kenney’s shop – it is the follow-up. We are working hard to fill new position. Have one existing position. Linda has done significant recruiting – without a whole lot of success. Follow-up and lab staff need to be specifically trained. There is a national organization that provides this training in 3 places: Baylor, Duke, or Mayo. Have a lab person scheduled to attend a training and a follow-up person scheduled to attend training.
The other piece of this is treatment. Historically, has been related to PKU. Probably will be additional experience base that will impact fiscal but also need to look at statutory direction again.
While this is happening, there is a group of legislators that are considering requiring us to do secondary panel that takes it up to 51. Not realistic to do this July 1 08. Discussions now – when could this happen. This is a big leap in terms of operating program. Need to assure quality in new process. Other concern – reason not included in core panel because not a consensus with the national group. Generally, core panel – conditions for which there is treatment. Secondary, conditions for which there is not treatment. 51 needs a lot more discussion, advisory committee to take a look + look at the practical side.,
Broad support for the expansion. More about how vs. whether or not to do it.
Gerard: What about the actual testing process? Any other issues about how many people are involved in the lab in the testing process?
Gerard: Have added physicians or personnel? There were 4 and now there are about 7?
Linda: yes, some were added, will check on that and get back with you.
Positives are retested?
Yes, retested with second sample.
Get about 2,000 now that we have to repeat. (some due to being unsatisfactory.)
??check number
Can run about 100,000 per one spec. (??? What does this mean)
Lot of tests!
Mary: When we talked about expanding to 51, was discussion about ethical dilemma that this creates. What do you think the responsibility of the state is if a positive is detected in a condition where there is no known treatment?
Dick: Arguments are…lots of conversation around this but not necessarily scientific analysis…those who think it’s a good idea – if we know, then it’s unethical to withhold. These children may be subjected to all kinds of further diagnostic work when we already know it, or have the capacity to know it.
Linda: Some may be offered genetic counseling. Some of the conditions in the secondary panel will move into the core panel as they develop treatments. (Now, some are on the verge.) It will change over time. Some are fairly rare. Some of it is unchartered territory. Kansas needs to get up to speed.
Mary: One argument for doing – it is known. If a treatment develops, we can go back and let parents know.
Dennis: Depends on the condition. Some will be fatal quickly.
Discussion on getting online versus staying online.
** KHPA Health Reform Presentation
See presentation and handout file by Barb Langner
Almost all of our initiatives have an aspect that touch kids. E.g., medical home, access, getting unenrolled children enrolled is another important initiative.
This plan is not inexpensive. It is paid for – for the 5 years we have priced it – by the cigarette tax. There is a mechanism to make it happen but it will not be easy.
Questions?
Will web-based enrollement tool require families to submit verification, or will it all be electronic?
Working to make it electronic. As of December we could officially declare backlog gone. It is still a hassle.
Does ability to make it entirely electronic contingent on eliminating citizenship requirements?
No, but there are a lot of processes to be worked out.
Because don’t have web-based enrollment, can’t enroll them at the time you are seeing them. Want to make point of contact the point of enrollment. This is our goal. Want to have a better system to allow web-based enrollment.
Anything else?
On healthy behaviors in schools, will there be funding for that? Schools are concerned about unfunded mandates.
It has a $ figure attached to it. It is the KDHE program. Coordinated school health. Can’t remember exact amount of $
Tom: Curriculum wise and funding wise, biggest issue is time. Have to give something up to add something.
Senator Kelly would suggest – instead of worrying about PE – we create opportunities for fitness. Think this has potential.
Tom: Inform families of medical coverage that is available for low-income families but they don’t take advantage of it. How do we get them involved?
Think we may reach more of these families when premium assistance program is put in place. A lot of evidence shows when family is ensured together, helps increase insurance and helps with their access of services. Hopeful this may be a vehicle.
** Dennis – Not just AAP recommendations but childhood obssity in general.
AAP recommendations – things we should have been doing anyway. Some guidelines on dietary habits. Decreasing TV/video time.
Talk about exam/laboratory data.
Also gives stage-wise approach. Starting with PC, then moving up to multi-disciplinary teams.
Take-away point – will provide a lot of education to providers. Providers have about a 15-minute window for well-child care, this alone will take about 30 minutes.
Questions? Just a brief overview on an issue to be in touch with.
Paul: I like the concept.
They do say – is family willing and ready to accept? If not, then will not work.
Mary Ann: Found with a project we did, 50% of my 8th grade boys are overweight. The BMIs that got referred, you cannot believe the phone calls we received. We were not longer allowed to share recommendation.
Dennis: BMIs – have to look at the child also. Can’t base everything on the BMI. KS Chapter of Academy of Pediatrics has Sunflower Foundaiton grant working on protocols and procedures. 1-2 page laminated sheet that goes to providers. Spells things out for them.
Jennifer: came here to share with group new CDC obesity announcement. Could be 1 mil?? over 5 year. KDHE applied 5 years about, did not receive. Open again. Main goals – (???get these from Jennifer???) In keeping with those, Paula Marmet, has several times that she will call many partners…if you have a desire to be a part of this, contact Jennifer or Paula. A lot of you are already on the list. Due in March. Quite a surprise; we were expecting it to come out in August.
When will funds be available?
June.
Jennifer will sent FOA – we will post online.
** Martha Hagen – BF in the workplace policy.
Was perhaps a miscommunication and the recommendations were a bit stalled, but we are correcting that, and it will be used.
Have had several contacts from people in different agencies
There was some national media interest in Babies at Work and BF in the workplace. Recommendations were
** Angela Norhous
Gave overview of Board, history, goal.
Have about 10, diverse, fantastic people on the board. Meet 1/month. Review cases, look for patterns, trends, risk factors. Anything that we can find that is preventable.
Goal is to reduce childhood deaths in KS>
We typically don’t introduce a bill on our own, but we do a lot of testifying.
Everything we receive in our office, we have access to all records. Everything we get is confidential once it is in our hands. We can disseminate aggregate information. We are statutorily bound with what we can release.
Handout – just the tip of the iceberg. But this is what the board wanted me to bring to you.
*Review handout.
Mandatory standardized driver’s education program.
…Angela went through the graduated licensing system recommendations
First thing about safety is learning how to drive. Have expedited weekend courses, need to get back to mandatory standardized driver’s education.
Wireless devices– this is something that needs to be under control
Farm permit – need to get this under control. Some abuse this. Want to think about – all applicants must produce a W-2 or proof of farm.
Booster law – took us (all the partners) 5 years to get that enacted. Need legislative support to reduce childhood deaths.
Suicides. Majority have some type of indicator. Very important for parents, family, friends, teachers, to recognize. Think suicide # could be dropped if mental health could have more attention. What if we specifically created something as part of insurance related to mental health?
Board believes teens do NOT have adequate access to mental health providers. Suicide is preventable. Board wants these mental health issues addressed.
If you go to report online, will give some specifics for suicide.
Coroner Duties
- Standardized investigation by coroners/med. Inv.
- Have some concerns about how autopsies are conducted.
- Need to have toxologies done, need complete autopsies – know there has be training for this. Coroners have the option to be reimbursed for child autopsies.
Attached Senate Bill 294 to the back.
Also on the back, have a new division – Abuse, Neglect, and Exploitation visit.
Annual report will soon be online!
(Add link on website.)
SIDS – these are further broken out.
Linda: SIDS network of Kansas does training/deaths investigation. Do you link with them?
Angie: Yes, absolutely.
We are seeing a rise in child abuse homicide. It is quite alarming.
Do appear to be more infant deaths occurring in child care providers. Majority of SIDS deaths do occur in the infants’ residence.
Premature births – would love to put out there why these premature births are happening but can’t give an accurate report because information is incomplete on alcohol, tobacco, narcotics.
Need to be very diligent. If you look at 3500 natural deaths, majority of those natural deaths are premature births. Why? This is one of the things you all could focus on. What is causing all of these deaths related to premature births?
Undetermined – too many are undetermined. Shouldn’t be if have thorough autopsies, etc.
Are you taking abuse on HB 2602 (check #)?
Making substance abuse in pregnancy a felony.
Angie: Haven’t looked into this yet.
Linda: Think professional provider groups may oppose to get women into treatment instead.
Dennis: This bill came up. Most of concern was from OBs and perinatologists – providers – if you make this a felony – they won’t get any care, they won’t report it. Then we’ve lost them to the system. This was the biggest concern.
Dennis: Didn’t we have an increase in infant mortality?
Yes, we did.
Had been decreasing slightly until recently.
Dennis: May be a lot of environmental factors that a fetus may be exposed to before a mother even knows she’s pregnant. If you wait until someone may be 12 weeks along and call the OB, by that time, a large amount of exposure has occurred. How do you address this? ..have to educate people so they know what to do if they think they might be pregnant or become pregnant.
Paul: Isn’t there an inattentive driving law?
Angie: There was, but it was pulled. Out there now as reckless, harder to identify. Need to redefine attentive driving.
Angie: Serving on Gov task force. If you try to pass law that says can’t use cell phone while driving. Who is going to pass it? Cell phones are very important to legislators.
If you have any concerns, anything you want, any concerns of a risk pattern that you want us to watch for, please let us know.
Gerard: On your undetermined, have you found any patterns? E.g., rural vs. urban?
Angie: Majority is incomplete investigation. Maybe some of the smaller towns, maybe not. Would have to say some of smaller areas are not getting all the information out we need. But it isn’t limited to just small towns. One of things we are trying for – to get better, more standardized investigation.
Gerard: The process your board goes through. Does every state do this?
Angie: Majority of states have something. WY just getting on board. Michigan divides into district and review by district. KS does it for the entire state. Don’t have various review teams for the state.
Board members are all volunteer.
Linda: Another way states differ. When Child Death Review Boards started in late 80s, early 90s. Some federal funding involved. Were placed in public health OR law enforcement realm. Our state chose to focus on child abuse and went into AGs office, but Child Death Review Board has since taken a much broader view.
Angie: We are grant funded. Do serve as a citizen review panel for the state (for SRS). My personal salary is paid for through AGs office. Everything else is grant funded.
** Vision problems.
Dr. Lozada. Why 3 years?
- Manpower. (if have multiple years, requires more manpower)
- Vision is fully developed at 3 years.
Why at opt office?
- want better health history, want parent present to get that history, want parent present so we give good information. If child passes at age 3, they are educated, have an idea on what is normal, what is not.
- Have appropriate equipment.
- Can control lighting and distractions.
- HIPAA
How many children are in SEE TO LEARN program? About 20-25% of children. May seem like a lot, but if we had a 20% immunization rate, this would be unheard of. Or 20% of newborns screened. This would be unacceptable. You are looking at a critical period where you want to intervene.
** Gary Robbins
* See Presentation
* Julie Toon- SEE TO LEARN is most developed program of the Council. Now have See to play.
Was primarily sports vision. Sports safety kits.
Primarily high school.
In meeting with Linda and Dave, asked what we are doing for 0-5.
Could adapt some of the forms we use for the younger age group.
Last part of SEE to Play – participate in vision screenings for special Olympics. Do vision screenings. Identify kids if they need further care.
3rd part of eye care council is geared more towards occupational eye hazards, called See to Work. Still underdeveloped.
In summary, the Eye Care Council wants to be an information resource for you.
What’s the difference between a screening, an examination, and an evaluation?
We don’t think there is a substitute for being seen by an optometrist or opthamologist + all of the available equipment you need. Screenings are fine, but they do miss a lot.
Evaluation for See to Learn – basically a full eye exam.
Have you worked with high school activities association?
Ideally, want to get this done when early, but have whole population of middle school or high school who need help.
This might be another group to talk with.
Need to find as many entry points as you can.
They will follow-up.
Paul: Don’t think they will agree to require an eye exam to get through the physical, but I think you should brng it up.
Tom: If you look through school’s perspective, there’s a reason to know if the kids have eye problems before
Drivers ed time – 8th grade – would be a good time to work with kids.
Betsy: Is it any 3-year-old, or is it more advantageous if they are closer to 3, 3.5, or 4?
Gary: If you see symptoms sooner, most opt will see sooner. Essentially one assessment before age 4.
Betsy: Parents are very thankful about this program. They are so pleased to hear about it. They think it is fabulous.
One misconception that is out there is that this is just for low-income. This is for EVERY 3-year old, regardless of income. It’s for everyone.
Tom: With computer use and kids being on the screen more earlier, are there things we need to be doing differently at school to prevent?
Julie: Seeing more near-sightedness. One of most common conditions is convergence insufficiency. (eyes focus behind paper rather than on paper.)
Gerard: One thing I notice in my practice, a little older age group 20s-30s, there are a lot of people in this world who have a very nominal prescription – very minimal – when you are dealing with a computer, monitors, cell phone, looking at pixilated letters versus printed letters, which are lesser quality, also the flicker. If you have a small presecription and can make it through high school, may not make it in the work force. These small prescritipns with increased use of computers is now a big problem.
What kind of recommendations would you like to see?
- Other avenenues to pursue to get higher participation in program. Continue working with KDHE.
- Bottom line: How can we distribute information? How can we get information out? It is underutilized. Would like to get to 50% in next 3 years.
Paul: In terms of trying to communicate, I will pitch this back to our organization, we can help get the information out.
Yes, would be helpful to have some help in the schools, working on some grants now, would also appreciate expertise from the school board association on language for grants, etc.
Can tell schools – want to keep kids out of special ed – identify vision problems sooner.
Dennis – can also present this information at the child and adolescent health council. Maybe refer this to that group.
Mary: Happy to take to Early Learning Coordinating Council.
Put on all organization’s website.
Will you be sharing results of Concordia study?
Yes, plan to share Superintendents meeting.
Get a report back next time on Immunizations.
Have the rest of the time looking at future topics, direction from Comm.
Kick around on email. Keep discussion going.
Adjourn.
Next Meeting April 18th.
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