Resources of the Month 2020

UCCCN December 2020 Resources of the Month
Presentation: Self-compassion - healthcare providers often have lots of compassion for others but are not sure how to turn that inward towards ourselves, redirect our passion towards ourselves more. Fight / Flight / Freeze ... the body gives the same response even if a physical threat isn’t present – What if the shark comes out today? Not super helpful to run because it’s in my head (threat that’s internal and vague) = Anxiety. Window of Tolerance: State of hyperarousal, optimal Zone of arousal, State of Hypoarousal. The S.T.O.P. Practice: Creating Space Around Automatic Reactions is a 4 minute practice that provides a chance for the body to get back to the optimal Window of Tolerance Zone.
Cases: Eric Christensen - care coordination for the youth of transition age. A lot of offices have limited capacity to help with the transition to adult care process. The UDOH Integrated Services Program and the 4 local health departments can help; 12-18 years old is the ideal, but can go up to age 21. Jade Porter, U Healthcare - has heard from several areas that Durable Medical Equipment DME is running short and on backorder. Gloves, oral suction catheters, for example. Ileana Ruiz, Southwest Children's Clinic - they stopped doing curbside visits and went back into the office because of the cold, but it's been a challenge. Need to keep staff safe when both parents are positive for Covid-19. Have gone back to doing visits outside; staff just try to stay warm enough with appropriate PPE.

UCCCN November 2020 Resources of the Month
Presentation: Caring for Siblings of CYSHCN Araya- 20 yr old; brother also 20 has CP and Autism, trach and feeding tube Sydney- 22 yr old; brother age 24 has Type 1 diabetes Lexi- 17 yr old; brother age 15 has autism and learning disabilities
Cases: Summary of discussion: Talk openly about the situation. Help the sibling understand the health condition, learn the terminology. Give them the choice on how much responsibility they may want to take in the future care of their sibling. Spread the support around. Use friends and family members to help everyone have breaks. Set a separate time for each child. Include allowing siblings to have alone time with their friends. Try to treat all the children the same. Look for mental health concerns in all members of the family. Advice for providers: Listen to parents and siblings about what a patient may or may not like. Have patience and move slowly. Look at the positive and be pro-active.

UCCCN October 2020 Resources of the Month
Presentation: Summary of the 2nd annual AYA Transition Summit held Oct 8th. This effort to improve the transition process for young adults in Utah is in collaboration with the Got Transition national alliance. Metrics to track successful transition. Survey was sent out again to assess progress from last year on the 6 Got Transition elements; 86 respondents. Three panel discussions: Adult healthcare providers, parents, young adults. Patient Journey Map tool follows patient through their lifespan or in this case their teen to adult transition years Illustrates all the people and things the patient and family is in contact with during their journey. Describes teen to adult transition skills and the patient’s growth over time.
Cases: Southwest Children's Clinic got their NCQA Patient Centered Medical Home designation. It has helped them to identify gaps in services because of the tracking they are now doing. Ileana from SWCC mentioned their drive-through flu clinic has been a hit; due to COVID, but might be new norm. Keeps healthy kids out of waiting room with sick ones.

UCCCN September 2020 Resources of the Month
Presentation: About IEPs and 504 Plans and COVID-19, by Esperanza Reyes, Assoc Director Utah Parent Center.
Cases: An update on a previous case - success in getting Medicaid for a Spanish-only speaking family. Teenage son who is non-verbal, using a G-tube, hasn't had medical care for 4 years but now will be getting seen. Persistence paid off. Very good news!

UCCCN August 2020 Resources of the Month
Presentation: Information from the UT DHS Division of Substance Abuse and Mental Health - Children's Services and PCH Behavioral Health Services about services and projects around children and youth behavioral health resources.
Cases: University Health has been communicating with clinics about the eAsthma Tracker Project (it's an app). Intermountain is working on the same project; said that tier 1, 2 and 3 levels present some barriers. The dashboard is easy to manage, should decrease a lot of the management for both care coordinators and parents. UPIQ is also setting up an asthma learning collaborative next month and it will include the eAsthma tracker. There will be MOC Part 4.

UCCCN July 2020 Resources of the Month
Presentation: Meeting topic was Motivational Interviewing training by Dr. Brad Lundahl, LCSW.
Cases: A Spanish-speaking family, son with CP, G-tube, autism, non-verbal, hasn't been seen by a doctor in years, mom doesn't have the money. Medicaid application system extremely frustrating. The group suggested contacting the Utah Health Policy Project and Take Care Utah for help. Also, consider applying for SSD; sometimes that's a faster way to get Medicaid.

UCCCN June 2020 Resources of the Month
Presentation: Discussion about helping families with CYSCHN plan for emergencies, presentation by Tia Dickson about the Utah Emergency Medical Services for Children (EMSC)'s CHIRP program (Children’s Health Information Red Pack).
Cases: A family with a 3 young children, two of whom likely have autism; needs a heavy duty wagon for all 3, with seatbelts/harnesses. Suggestions included the UCAT, Shriners Wheelchair and Carseat services, and SureStop Folding Stroller designed for multiples with special needs. QI win: S small team at SelectHealth was able to open up enteral formula policy; it's now much less restrictive.

UCCCN May 2020 Resources of the Month
Presentation: Medical Home Portal custom service provider lists. Demonstrated recent improvements making it easier than ever to create your own list of local providers from scratch, name it and give it a description, make it shareable or private, share it by copying and sending the URL, save it as a PDF to print or email that way, and copy another list and make it your own.
Cases: A baby boy with SMA Type I, born to a mom from Asia on a work Visa that expires in October. The baby is responding to the transfusions. Suggestions for help with immigration: US Citizenship and Immigration Services, Catholic Community Services, Asian Association of Utah, the International Rescue Committee; immigration packet from National Family Voices.

UCCCN April 2020 Resources of the Month
Presentation: Tania Tetz, UDOH, Being an Askable Adult - someone an adolescent trusts, considers to be approachable, makes a space for any questions, a source of information and values. Helps to act as a protective factor. CYSCHN participate in more risky behaviors … substance use, sex at a younger age. A toolkit to help improve communication between adults and adolescents that have IEPs. Also videos and 4 hours of in-person (live online) training. Teachers, paraprofessionals and parents can sign up for in-person. Open to all, but priority is for families with kids with IEPs.
Cases: A family needs a spacer for inhaler; it’s $30 out of pocket. Suggestion to call the SL County Asthma Program - they should be able to provide that for free.

UCCCN February 2020 Resources of the Month
Presentation: Avery Pince-Hyder, Program Manager with the Utah Developmental Disabilities Council, presented on their findings about health access throughout the state, mentioned 3 bills in front of the Utah Legislature this session, and asked for input from the group.
Cases: Included an update on transitioning 26 yo young man, now on the wait list (one year) for the UNI HOME program, and an Intermountain patient getting discharged back to home in Vernal; having trouble getting access to formula, oxygen, other needs because of the rural area; it was suggested that they work with the UDOH ISP team there. Also, a request for more Motivational Interviewing training.

UCCCN January 2020 Resources of the Month
Presentations: on Utah asthma programs and resources, including local health departments, home visiting programs, and UPIQ quality improvement options; SPARK for Autism Utah project to gather genetic information from families to further autism research.
Cases: Case about a 14 yr old young man with autism who is self-stimulating, attends an autism school, has both a home and a school ABA provider. Becoming an issue at school. Dr. Carbone suggested a team approach (both ABA providers on the same page with the family). Explore family’s beliefs, becoming a sexual being is normal, how to accommodate so accepted by family, where it’s appropriate.

Authors & Reviewers

Initial publication: February 2019; last update/revision: September 2022
Current Authors and Reviewers:
Author: Mindy Tueller, MS, MCHES