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

Here are your Resources of the Month:
Updates:

Gina from Utah Family Voices on legislative action on Children’s Waiver program. There are more slots, for Medicaid and for private insurance. The window is short. Apply so that if denied, have time to keep trying, appeal. Cite “comprehensive medical needs.”

Nevah Stevenson, Shriners Hospital for Children SLC: children only see the ancillary specialists there in the context of being a Shriners’ orthopedic patient. Clinic notes are sent to the child’s PCP after every visit. Parents may opt-in to the Shriners Health Information Exchange and designate which doctors can access the child’s Shriners’ records. Nevah can help with a phone conference between PCP and Shriners docs. 
Brainstorming:

Case #1 from Heidi Bates: can one get a variance to go to Jordan SD if you live outside the boundaries? Gina may be able to help. Closure of charter school American International School of Utah in Murray has many special needs families looking for alternatives. Eric C: Jordan SD is tight on special permits and numbers.
 
Case #2 from Gina: Spanish-only speaking family, young adult son just turned 18. Social Security application process. Homebound, has autism. Not enough info in the medical records; want him to come in for an evaluation but he won’t/can’t come in. DSPD is their back-road in, they do a home visit, will do the evaluation but there’s a wait. SS info is only in English. If you don’t see SSI’s evaluator, they close your case.
 
Case #3 from Heidi Bates: Since January Redwood Clinic has had an influx of older adolescent refugees who are significantly delayed. As secondary resettled clients, moving from elsewhere in the US to here, more difficult to get services from a resettlement agency, nor are they US citizens. The citizenship test is in English but they can’t read or write; one boy is deaf-blind, no sign language. No testing for disabilities. UDAC has 8-month wait for older kids. More resettlement supports for women and children than for men.
 
  • International Rescue Committee (IRC) Salt Lake City, for Children, Youth and Education: providing educational and developmental opportunities that build the essential academic, personal and social skills needed to succeed. MHP 10618

  • Getting home teaching.

  • Refugee Resettlement Program, Catholic Community Services AKA Preferred Communities Program (PCP). Must be in US less than 5 years. A men’s wellness program, for domestic violence issues. PCP will take them to appointments and teach how to navigate, get a job. Exceptions for special circumstances if it’s been over 5 years. An MD available to do talks. MHP 34458

Service Category Victim Advocacy


Case #4 from Angee Richins—for neonatal abstinence syndrome tracking, if not getting to appointments, referring to DCFS. Is there another way? Moms are typically hard to reach.
If they don’t answer the phone Heidi goes out to home and knocks on the door. She has seen instances where father is holding the mother hostage. DCFS closes case if can’t get ahold of them.



May call police at 911 to do a wellness check. If the infant was born in the hospital and is drug positive, DCFS is involved. DCFS now has a nurse onboard. Nurse can go to the home and educate parents.
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:   May 2019 UCCCN Resources
Presentation: “SPARK for Autism U of U Project” - Gabi Baraghoshi & Dawn Bentley, UPIQ coaches  

SPARK program - to facilitate a precision medicine approach that includes the DNA, environment and lifestyle of the individual and their family. 31 clinical sites nationwide, want to enroll 50,000 families. The U of U is the only clinical site in Utah; Paul Carbone is the P.I.  Professional diagnosis includes an educational assessment, a team of professionals like Integrated Services, primary care. Participation is done online by parent or adult, takes about 30 minutes. A spit kit for DNA collection will be sent. No-cost genetic testing. Incentive for trios … biological mom & dad plus person with ASD, up to $50 in Amazon gift card). Please let Dawn & Gabi know about any autism events - they can recruit and collect saliva.  

Please refer:
1-833-474-7092

Eligibility:
  • Must live in the US
  • Read/understand English
  • Be an adult with autism or the parent (biological/adoptive) of a child or dependent adult with autism 
  • With a “professional” diagnosis, but no ICD-10 code required
  • Biological siblings also welcome.

Need more details? Contact Gabi Baraghoshi at gabriele.baraghoshi@hsc.utah.edu or Dawn Bentley at dawn.bentley@hsc.utah.edu .
Presentation: “Being a Self-Advocate” – Eric Stoker, Self-advocate, Developmental Disabilities Council employee, URLEND Board

About Eric: he likes to play basketball. Likes the Jazz. Learned to read at age 3. He is a young adult now, went to West Jordan schools (Jordan District). He had great teachers who helped him learn life skills: taking mass transit, keeping track of his day, healthy eating and getting good sleep. They taught him to write down his questions, to make appointments. Eric’s PCP recommended a good adult dentist, and some doctors but that was a difficult time because most didn’t accept Medicaid. Eric often goes to appointments by himself. Dr. Tom Metcalf was his pediatrician; with a warm handoff to Dr. Owen at age 18 or 19. Eric was told about the transition in a face-to-face visit. 

Change is hard for Eric and others with disabilities. School transition was hard from Jordan High to South Valley School. Taking a tour of South Valley made that transition easier. Goals: Eric wants to manage the Utes basketball team. Transitions are easier if he reads a book or listens to music and does some role play. Talking through the changes is good; a welcome-visit can be very helpful and lessens anxiety about change. He suggests care coordinators walk parents through information instead of giving them everything at once. Eric encouraged us to make a friend with a person with a disability, get to know their interests. We’re moving past “autism awareness” to “autism acceptance.” His first self-advocacy experience was in 9th grade – he hated riding the bus #170. He role-played with his mom before a parent teacher conference to ask for a change to a different bus and got his wish! Finding landmarks when uses public transportation helps. 

Eric is helping to put on a large self-advocacy conference this weekend - a lot of people will be coming! He was 2.5 when he was diagnosed with a developmental delay, got the formal diagnosis of ASD at age 7, and attended his first IEP meeting at age 5. He wishes he had asked for more accommodations for testing in those IEP meetings. Early speech therapy taught him to speak in complete sentences. He likes the idea of the SPARK project.
Part Two of group discussion on overcoming barriers in autism care

M-CHAT screener options

  • Paper M-CHATs are probably the best
  • iPad M-CHATs filled out during the visit
  • MA administers M-CHATs during the visit
  • Pre-visit by phone M-CHAT

Insurance should cover the 30-month WCC. UVP is doing this and has no problems getting reimbursed.

The Utah Medicaid rule for receiving ABA services: If the ASD diagnosis has been made by PCP, a psychologist or interdisciplinary team (speech therapist, audiologist, etc.), an ADOS is not needed. M-CHAT and M-CHAT-1 with diagnosis will qualify for Medicaid. See the Utah Medicaid Provider Manual/Autism Spectrum Disorder March 2019. R ead section " 3-1 Establishing Medical Necessity " in its entirety.

Once a child is Dx, need to become familiar w/Medicaid policies, educate providers in the community for ABA therapy; waiting way too long. Don’t need additional testing if Dx comes from psychologist.
Other:

Our next meeting will be June 19th at the SLC (Taylorsville) USU Campus and upon request, at additional USU extension campuses. Our meeting topic will be referring to appropriate level of care for mental health issues.
Here is our UCCCN YouTube playlist o f 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