January 2020 Resources of the Month
Dear UCCCN members,
Here are your January 2020 resources and meeting summary.
Annual UCCCN Learning Session
Please plan on attending the UCCCN Learning Session on Wednesday,
from 8:00 – 11:30 am
on "Social Determinants of Health and their Impact on CYSHCN" at the Doty Education Center at Intermountain in Murray. Registration information will be forthcoming.
Developmental Disability Council
The Developmental Disability Council will be presenting to UCCCN next month; they are holding a roundtable to discuss delegation of services for waiver recipients (and others) covered by the Nurse Practice Act on January 27, 4 pm at the State Capitol Senate Building. They are also holding Town Hall Meetings across Utah from Jan 23 - April 16 to guide their state plan. For more information, s
Tay Haines, Portal Resources Coordinator, is Retiring
Many many thanks to Tay for all her hard work and care for UCCCN and the Medical Home Portal. Best wishes for a wonderful retirement!
Writing Letters of Medical Necessity
Improving the Medical Home Portal’s Letters of Medical Necessity information – we need your help. UCCCN members write these daily, many for wheelchairs, DME, Synagis (RSV), PediaSure, sleep-safe beds, outside-of-network provider visits (sub-sub-specialists). Heidi created dot phrases in Epic
she’ll send for ABA Therapy, DME.
Also, instructions should say to ask insurance what needs to be included, can tweak letter to address the policy (per Pat Rowe). Heidi works with many malnourished refugees; insurance approves prescriptive nutrition supplements but not over-the-counter items. There are some other ways to get nutrition supplements.
- We Care Program Offers financial assistance with a healthier alternative thickening option to cereals for infants with reflux. Medicaid patients automatically qualify when thickening is deemed medically necessary. Nationwide: MHP 36081
- Abbott Patient Assistance Program Assists with costs for formulas, Ensure and PediaSure, Abbott Nutrition products. Nationwide: MHP 23903
- Nestle HealthCare Nutrition Patient Assistance Program Provides brand name medications at no or low cost. Funding for nutrition products available, including for people who require a tube feeding to meet 100% of daily nutritional requirements. Nationwide: MHP 34157
- NeedyMeds – Provides a free drug discount card that offers a discount of up to 80% off prescriptions drugs, medical supplies written on a prescription form, over the counter drugs, and pet prescriptions. Nationwide: MHP 34156
- MeadJohnson Nutrition (Enfamil) Lists a variety of Enfamil product programs for different needs: Enfamil, Helping Hand (Enfamil), Nutramigen Savings and Support Program (Enfamil), Premature (Enfamil), Multiple Birth Program (Enfamil). Nationwide: MHP 34107
from Heather Castor, an autism query for Dr. Paul Carbone. 14 yr old young man with autism is self-stimulating, attends an autism school, has both a home ABA provider and a school ABA provider. Socially an issue, to the point that a lawsuit was filed by school. Sharon has contacted UNI autism clinic, who recommended ABA and OT. Dr. Carbone suggested a team approach (both ABA providers on the same page with the family). Explore family’s beliefs, customs, becoming a sexual being is normal, how to accommodate so accepted by family. Opportunities to learn. Need to learn where it’s appropriate. Not in a bathroom, a closed bedroom door. Shape behavior.
CALL-UP, University Neuropsychiatric Institute
Consultation Access Link Line to Utah Psychiatry, a statewide psychiatric phone consult service, CALL-UP aims to optimize primary care providers’ ability and confidence to diagnose and treat mild to moderate mental health issues; support providers with treatments for mild to moderate psychiatric issues and help providers prescribe accurate psychiatric medication for patients up to age 24. 12 – 4:30 pm M - F.
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.
Presenters: Asthma Programs and Resources
Andrea Jensen, Utah County; Gabi Baraghoshi, UPIQ Asthma Project
Gabi Baraghoshi, UPIQ asthma grant recently renewed for 5 years, create partnerships, resources (goals online), 2018 guidelines.
Measures: outcome, process, balancing.
Assessment and Education –
2019 Asthma Learning Collaborative - showed the data (which was very positive). Found that a QI champion is really a key part of a successful QI project - holding the gains after 6 months.
Andrea Jensen, Utah County Health Asthma Program Coordinator. (Also at the meeting: Brittany Parry, Salt Lake County Health Asthma Program Coordinator. Two new counties, Central Utah Health District and Tri-County Health District, accepting only Medicaid patients. Possibly Weber HD in future.
Andrea: Utah has 3
highest death rate due to asthma.
Funding for programs is from the CDC. They can really fill in the gaps after patient is diagnosed. Can come into the home, in their own environment. Fliers are available in English and Spanish. The Home Visiting program includes 3 home visits, day or evening, may be able to do some weekend visits, soon can do some virtual visits, plus 2 calls.
Referrals: Can get a list of Intermountain patients (have access to their system), but will also get the patient name and contact info from clinics and will reach out to them. Will ultimately close the feedback loop with the clinic.
- Education: 24% of COPD is from former asthma patients (who’ve never smoked).
- Triggers, emergency rescue medicine vs daily
- Assess inhaler technique (94% of people use their inhaler incorrectly)
- Check to see if they have a PCP, provide an extensive list of low-cost clinics, can also help with finding insurance, list of federally funded pharmacies
- Home-based trigger reduction:
- Provide a number of cleaning products and teach them how to clean.
- Help with Repairs: Green & Healthy Homes Initiative in SL County
- Community Block Development Grant (CBDG)
- Free Shark vacuums for homes on Medicaid
- Habitat for Humanity in Utah County
- Critical home repair loans
- Visit #3 Follow up on goals; Asthma control test
Great outcomes from the program;
significant improvement over self-reported first year.
Asthma medications and supplies are expensive! Going online to look for coupons can be successful. In Utah County,
Mountainlands Family Health Center and Pharmacy
West Park Family Health Center, Provo. Federally funded discounted pharmacy services are only available to active Mountainlands Family Health Center patients.
Stephanie and Sharon both work at Primary Children's and feel that patients with asthma are not getting info on these programs; Brittany will connect with them about how she can reach those families.
Presentation: Dr. Paul Carbone, SPARK for Autism University of Utah
SPARK is the
Simons Foundation Powering Autism Research for Knowledge
- a precision medicine approach to autism. 100 or so genes are related to autism. Researchers can identify the cause of autism for an individual about 30-40% of the time. SPARK is a long-term partnership. Just published a new AAP guideline for autism (Dr. Carbone is the chair of the AAP Autism group). Whole exome sequencing with the SPARK project (definitely more comprehensive than typically covered) and is
. To be eligible, the individual with autism just needs to have a medical diagnosis; there is no age limit. Need a massive database to identify all the genes that aren’t as directly causative and environmental features that cause many cases of autism. Each person (parents, too) in the study receives a spit kit. Their DNA will be tested every year against new knowledge.
31 clinical sites in the US; the U of U is the only clinical site in Utah. Families can opt in to letting their PCPs know the results. SPARK has genetic counselors. Currently, no medications for autism, but maybe eventually (because of this research). Some forms of autism have an increased risk of other conditions that may come to light. Be patient - good research takes time. Expect about 2 years for information. Please refer the families you work with!
Our next meeting will be
February 19th at the
SLC (Taylorsville) USU Campus and upon request, at
additional USU extension campuses. Presenting will be the Utah Developmental Disabilities Council.
Mindy and Tay