June 2020 Resources of the Month
Dear UCCCN members,

Here are your June 2020 resources and meeting summary.

Medical Home Portal Updates

Our July meeting will be a Motivational Interviewing training and will extend until 11:30 am. Please put it on your calendar (July 15th, 8:30 - 11:30 am).

Autism and Wandering - Heidi Bates, UPIQ QI Specialist

With summer here again, it's important to think about children with autism who may wander. 49% of children with autism wander, and the risk for drowning is high. Some tips:
  • Dollar Stores have inexpensive devices to alert when a door is opened; the Utah Parent Center will post on FaceBook when they are in stock
  • Tracking devices are available if the child will wear them
  • Introduce child to neighbors, fire station 
  • National Autism Association has the Be REDy booklet with great free downloadable handouts …

Covid-19 and kids

Pat asked if Chuck knows about Covid-19 in kids in Utah. Chuck: kids under 1 are at a bit higher risk. Vectors once infected? Seems relatively low, but very hard to study. Complex metabolic syndrome similar to Kawasaki. Presents 3-4 weeks after infection. MIS-C. That is the more serious complication in kids; delayed inflammatory reaction. May be due to antibodies … ?? Fewer ACE receptors may have something to do with lower risk. See also the Medical Home Portal's page with Covid-19 resources for families, children.


Case #1: Gwen: family with a 4 yo, 3 yo, and 2 yo. Suspects that the 2 older kids have autism. On the waiting list for services. Large kids, hard to get around. Currently use a double stroller when they go outside; kids wander when not contained. Family needs a heavy duty wagon for all 3 kids, with seatbelts/harnesses. Gina: call the UCAT, they may be able to help or provide other suggestions for resources. Tia - the group Mommies of Multiples gives SureStop Folding Stroller great ratings, designed for special needs. Jill/Katie - Shriners Wheelchair and Carseat services.

Medical Equipment/Supplies Service Category

Car Seats, Assistance Service Category

Quality Improvement Win : Pat Rowe - a small team at SelectHealth has been looking at their enteral formula policy. It has just been opened up, much less restrictive. Increases oral feeds from G-tube feeding. 50% total calories is the new amount (down from 70%). Still doesn’t cover over-the-counter formulas. Gina: this is huge! Thank you so much. Pat: pass this news on to other payers - so they can make this change, too!

Resource: Jill Conner - Shriners SLC is working on adding virtual tours. The first is for Utah Clubfoot Clinic. She will send the link to Mindy when it’s ready.

Pediatric Orthopedics Service Category

Update:    Natalie said that the Integrated Service Program has been increasing telehealth visits - this is new to them. Prior to Covid, they had become mainly a diagnostic clinic for autism, out of necessity. Now they are just focusing on supportive help - seems like families are enjoying it. They are looking to refer families to the nearest diagnostic resources during this time.

Disclaimer: These resources come from our members as part of the meeting brainstorming session; please check with your providers to make sure they are appropriate for your patient/families.

You can find a custom list of these service providers that can be printed, emailed, and more, here : June 2020 UCCCN Resources of the Month
Helping Families with CYSCHN Plan for Emergencies

See the Medical Home Portal's page on Planning for Emergencies . Gina Money: Utah Family Voices / Utah Parent Center staff present workshops on this topic regularly, have thought more about natural disasters and not so much about pandemics (until now).
  • Emergency Information Form … is in the Care Notebook on the Medical Home Portal
  • Try to have copies of the key information on the child (backpack, for instance) and in the car
  • Ready.gov … a great resource. Recommends stocking up on medications for longer periods (at least a 2 week supply, ideally a month supply). You can refill right before the time period is over (try to stockpile over time). Requires planning ahead, considering shipping times. 
  • Families need to know that during a natural disaster, individuals will not likely be the first to rescued, even if they are identified on a registry. Get to know your neighbors, fire department, EMS, particularly if your child has equipment needs that won’t be on an emergency vehicle.

Presenter: Tia Dickson, BSN, RN, Utah EMS for Children Nurse Clinical Consultant

Funding is provided at a national level for emergency medical care for children, no matter where they live. The Utah Emergency Medical Services for Children (EMSC) is part of the  Utah Dept of Health Bureau of Emergency Medical Services and Preparedness  in collaboration with Primary Children’s Hospital.
  • Utah EMSC has a group of volunteers across the state.   Local representatives - get to know them in your area!  Great resources, especially for disaster preparedness.  Contact info can be found here
  • Pediatric Readiness Project - assesses hospitals (via a survey that went out in January 2020, will be relaunched shortly) and other facilities for readiness for helping kids during emergencies. Performance goals will be identified after getting the data back. 
  • The Children’s Health Information Red Pack (CHIRP) program – has been around for about 6 years.  A collaboration between PCH and EMSC.  Red packs: two vials that contain documents about what the child needs during an emergent event, including 
  • Special Needs / Equipment
  • History
  • Demographics
  • Calming techniques, special toys, etc. 
  • Physician and specialist information  
  • Any child with special needs can be enrolled 
  • Parents are asked to release HIPAA so information is available right away for EMS and EDs. Emails to ask parents to keep info up to date every 6 mos
  • Provides parents peace of mind 
  • Enroll here - done all online.  Two documents are generated and in the EMSC system.  Parents will receive a letter explaining the program (and referring the family to the MHP!).  They get the vials, copies of the forms, and the Red pack, sticker for the back of the entry door, and fridge magnet.  EMS is trained to look for the sticker (a little hit or miss).  Fridge vial - why?  Because the fridge is the only mandated appliance in the home.  Eventually, the registry is to be connected to the emergency dispatch system.  On hold for now while several related data systems are migrated to new software.  
  • PECC - Pediatric Emergency Care Coordinators in every hospital, EMS agency in the state.  Better outcomes, higher compliance, better preparedness.
  • EMSC Connects newsletter (monthly) ….  Subscribe (see the EMSC webpage).  (This month's issue is dedicated to child abuse). Information about Covid-19 included; 47,000 cases of confirmed Covid-19 cases in children in the US; largely mild.
  • Pediatric Emergency and Trauma Outreach Series (PETOS) - was monthly until Covid.  Relaunches on July 13th (second Monday of the month) 
  • Chuck: Is there access to the CHIRP system by outside agencies? Tia: not at this time; working on access by the cHIE.
  • Katie (an EMS provider in SLC) … she looks for the Red packs on calls! That makes Tia very happy. (-: 
Our next meeting date: July 15th, 2020 (remember, this will be a 3 hour Motivational Interviewing training).

Here is our YouTube UCCCN 2020 Playlist for archived meeting recordings.

Also, if you are often connecting to our monthly meeting by smart phone, consider downloading the GoToMeeting app so you can see at least a small version on their phone screen.

Have a wonderful week!
Mindy Tueller, MS, MCHES
Manager, Medical Home Portal
Facilitator, Utah Children’s Care Coordination Network
Department of Pediatrics
University of Utah

Medical Home Portal | UCCCN | 801-213-3920 | mindy.tueller@utah.edu | Medical Home Portal