April 2019 Resources of the Month
Dear UCCCN members and interested parties,

Here are your Resources of the Month:
Brainstorming:

Case #1 from Toni Estrada—Will soon be meeting with a mom with 4 adopted kids; one child is from another country; has TBI from abuse from a former foster family, long and short-term memory loss. The family has insurance, but it won’t cover this child for an unknown reason. Needs assistance with expense of MRI, above income for Medicaid.

Start with insurance, adoption is a major life event; need a denial from them to get any other services.

Service Category Financial Assistance, Other
  • Friends of Man Referring Professionals (health care and social workers, clergy, counselors, teachers, etc.) submit applications on behalf of people in need of assistance. SP 34390

  • United Healthcare Children’s Foundation Provides grants, up to $5,000, for families who have children with critical healthcare treatment, services, or equipment not covered or not fully covered by their parents' health benefit plans to help pay for child health care services such as speech therapy, physical therapy, occupational therapy sessions, prescriptions, and medical equipment. Nationwide SP 34182
  • Financial Assistance, Intermountain Healthcare Intermountain hospitals use a sliding scale that considers an individual's family income and family size, total amount of medical bills, and available liquid assets. Intermountain will also review an individual's specific situation to determine if additional assistance should be provided.  SP 22617
Adoption agency may have resources. Also, Catholic Community Services - Northern Utah. SP 10919

Case #2 from Mindy Buttars -- 9 yr-old born outside of country with Angelman Syndrome, brain and GI -- issues; two recent emergency hospital visits because has so many issues; not sure of the legal status of the parents, dad is not working. Not eligible for children’s Medicaid waiver because not a citizen. Clinic refers for speech and occupational therapies; school services are not sufficient.

  • Angel’s Hands Foundation, Utah. Assists those with special needs primarily with medically related expenses, either not covered or partially covered by insurance; non-medically necessary equipment, and educational, moral, social support. Must first complete online application. SP 17440

  • Angelman Syndrome Foundation Offers a Family Resource Team to help find needed resources; educational programs and Angelman Syndrome Resources. Regional representatives provide networking and referrals in your area. Nationwide SP 20707


Case #3 from Wes Smith—Tracking a child who wanders, small boy likes to escape in the middle of the night, can get around door alarms, sensory issues so won’t wear bracelet or collar. Will wear shoes.

Tina Persels, Utah Family Voices, has encountered similar issues and may know of some creative ideas.

Services Category Assistive Technology Equipment
Other ideas:
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:   April 2019 UCCCN Resources
Presentation: "Autism in Utah - A Closer Look" - Colin Kingsbury, MS, Autism Systems Program Manager at CSHCN and Autism Council of Utah board member

You can download Colin's slides, as well. Colin is hoping to get updated statistics in a couple of years.
The CDC thinks the ratio between girls and boys diagnosed with ASD will close as more girls are identified and diagnosed.

The statistics show that we are still missing identifying young kids with ASD in Utah. About 20% of kids with ASD are identified solely through schools. It seems to have to do with socio- economic status. One third are identified after age 8.

There are many screening tools, but the M-CHAT is the current gold standard.
Comments - many families whose children are identified as at-risk are getting services through the school and don’t care about a formal diagnosis, until those services aren’t enough or they have problems with the school. 

Two initiatives beginning soon through Autism Council of Utah:
  • Help Me Grow will do an M-CHAT by text/phone starting in the fall. A link is texted to the parent who can then fill out an easy-to-complete M-CHAT on their phone. This initiative covers the entire state.
  • A pilot with the Autism Spectrum Disorders Clinic and WIC clinics. ASDC will do a free evaluation if the child fails the M-CHAT offered at the WIC office.

SPARK Autism Research – research studies engaging families and adults with autism. Mental health on adults, depression, anxiety, co-occurring issues SP 34383
·        Graduation rates lower, lower income
·        Bipolar, anxiety, 8 year olds, suicide in females
·        Medicaid must cover children and adults

For Medicaid coverage, an ADOS test is needed. It may be that UDAC has an exemption; Colin wasn’t sure. The Utah Legislature did pass SB0095. It has some positive components: removes age caps, removes maximum hour caps for treatment. Should go into effect July 1 st .
Question: Is there an autism registry for Utah? Yes. Utah Registry of Autism and Developmental Diagnosis (URADD) requests information every two years from major healthcare providers. Double counting a big issue due to being seen at so many places.

Is there a time frame for reporting diagnosis? To URADD within 30 days, though not followed.
Colin’s resource lists: Autism Evaluation Providers and ABA Providers
"A Positive Screen - Now What? A Closer Look in your Clinic" - Dawn Bentley, UPIQ QI Specialist

UPIQ is participating in a Peds teleECHO focusing on pediatric behavioral health and Autism Spectrum Disorder -  the link below has a sign-up link that people can join the remaining sessions as well as access the previously recorded sessions and power pointshttps://physicians.utah.edu/echo/clinical-support-areas/pediatrics.php

Those in attendance then broke up into small groups to do some brainstorming on what their organizations do after a positive screen for autism. More to come on this exercise. 
Other:

We will send out the summaries from the 4 small group workshops, along with information on finding ASD prevalence information for your clinic, early next week.

Shriners Hospital – Salt Lake City Open House is May 14th from 11 am – 2 pm. It will include a presentation, hospital tours, and lunch. Please RSVP by May 6th to Jill Conner, jconner@shrinenet.org or 801-657-8818 (call or text).

Our next meeting will be May 16 at the SLC (Taylorsville) USU Campus and upon request, at additional USU extension campuses. We will be continuing with part two of the topic of autism.
Here is our UCCCN YouTube playlist of recorded archived meeting recordings.

Best,
Mindy & Tay
Mindy Tueller, MS
Manager, Medical Home Portal
Facilitator, Utah Children’s Care Coordination Network
Department of Pediatrics
University of Utah
801-213-3920

Tay Haines
Portal Services and Resources Coordinator
Medical Home Portal
Department of Pediatrics
University of Utah
801-587-1464
Medical Home Portal | UCCCN | 801-213-3920 | mindy.tueller@utah.edu | Medical Home Portal