Annual Report Fiscal Year 2018:  This section provides a summary of Federal Fiscal Year 2018 (FFY18) activities, accomplishments, and challenges related to National Performance Measures (NPMs) and State Performance Measures (SPMs) (2016-2020) for the Children with Special Health Care Needs (CSHCN) Domain.  All Maternal and Child Health (MCH) Unit programs (Women and Infant Health, Child Health, Youth and Young Adult Health, and Children’s Special Health (CSH)) support efforts within this Domain.

Strategy 1:  Support the Parent Partner Project in health care settings

The Wyoming Parent Partner Program (PPP) began in Wyoming approximately seven years ago as a partnership between the MCH Unit, the Mountain States Genetics Regional Collaborative (MSGRC, now the Mountain States Regional Genetics Network) and the Hali Project. This evidence-informed program helps medical homes identify and hire a parent within their practice that has a child with special health care needs. These parents, called Parent Partners, are on staff approximately 16 hours a week when the provider is seeing CSHCN clients. The Parent Partner works as a peer mentor to support the families and provide many of the elements of patient centered medical home.  Parent Partners are paid $15/hour.  Beginning in SFY 2020, one Parent Partner will also serve as a statewide coordinator at $20/hour.  In addition, at least one Parent Partner will provide services virtually. 

The Child Health Program Manager (CHPM) tracks the number of unique families served by the Wyoming PPP. During FFY2018, the PPP served 189 unique families and unique 233 children. Parent Partners serve clinics in Cheyenne, Casper, Riverton, and the F.E. Warren Air Force Base (Cheyenne, Wyoming). 

Strategy 2: Provide in-person and telehealth services for ongoing genetics clinics

Wyoming has long offered genetics services for Wyoming families, in an effort to fill the gap left by an absence of genetics providers in Wyoming. The previous model held up to 25 in-person clinics throughout the state. In 2017, the MCH Unit convened stakeholders from PHN, Rural and Frontier Health Unit, and University of Utah to plan a Wyoming telehealth genetics pilot project. By using a telehealth follow-up model, the WDH could prioritize funding and reduce overall costs for genetics services, while still offering this critical service to families dealing with genetic-related issues. This partnership includes the WDH, the Wyoming Institute for Disabilities (University of Wyoming), and the Division of Medical Genetics, Department of Pediatrics (University of Utah).

The first two telehealth genetics clinics launched in early 2018 in two Wyoming locations, Casper (Natrona County) and Cheyenne (Laramie County); communities selected for their high volume of patient referrals and central locations in the state.  While initial visits will always be in person, Wyoming families will now be able to obtain follow-up genetic services via telehealth. Additionally, under the new model, the WDH anticipates an annual cost savings of close to 75%.

An evaluation of the new program was launched in early 2018, including both quantitative and qualitative data collection. A complete report about the results of this evaluation is available upon request.  A summary of key findings follows.  

Phase 1, the quantitative portion of the evaluation, asked three key questions: 1) Who are we currently serving?  2) What would happen if there were no Wyoming genetic clinics? 3) Is telemedicine an acceptable option for patients and providers? 

As of December 31, 2018 Wyoming Genetic Program enrolled 69 clients with services provided to 63 individuals.  Of these, 24 patients had a telehealth visit.

Clients enrolled in the program (n=69) averaged 10 years of age, with a range from birth to 45 years. The majority (74%) were enrolled in Wyoming Medicaid.  Sixty-six percent (66%) resided in medically underserved areas and 70% of parents, caregivers, or adult patients reported educational levels of high school graduation or less.  Over 60% reported that they had to take time off work or school for the appointment.  Patient services were split between two sites; Laramie County (Cheyenne) with 58% of the patients and Natrona County (Casper) with 42% of the patients.  Most patients (85%) had not tried to get genetic services elsewhere.  Denver or Salt Lake City were most often cited as options for genetic services however both require long waits, with Denver scheduling approximately 18 months out.   

All patients (whether they received an in-person visits or telehealth visit) completed a post-visit survey.  Those receiving telehealth services (n=24) felt that telegenetics made it easier for them or their child to receive services and that telemedicine was more convenient than traveling out-of-state.  All were satisfied with the quality of services received and said their questions were answered.  It was the first time that most families had used telemedicine.

Phase 2 and Phase 3 of the evaluation interviewed front-line providers (front desk clerks, public health nurses, consulting physicians) about their experience with the Wyoming Genetics Telehealth program.  While patient satisfaction, travel times, and barriers to services were important for program coordinators to understand, so too was the acceptability of telehealth to providers. Questions included how telehealth fit into their current role, whether the training that they received had been adequate, the future of telehealth in Wyoming, and suggestions for improvement of the program. 

Results proved informative. Assets included excellent relationships between both public health nursing teams and the consulting providers, longer appointments for families using telehealth, and the utilization of equipment already in place at the two clinic sites.  Challenges included working with families who lived outside the county, particularly in the area of medical record acquisition prior to the visit and resource referral following the visit. The public health nursing team from Natrona County (Casper) experienced greater challenges in this area because most of the individuals scheduled at their clinic were not from their county. Laramie County (Cheyenne) had established relationships with most of their patients, resulting in fewer appointment cancellations and more complete acquisition of needed medical records at the front end. For all patients, transportation in our rural and frontier state continues to be a barrier to care.    

Action steps for the Wyoming Genetics Clinic include marketing the program to local providers and providing more information for families about what a telehealth visit entails. Finally, a cluster of families residing in Fremont County (in and near the Wind River Indian Reservation) was identified and to meet their needs, a third genetic clinic site will launch in mid-2019 in Riverton, Wyoming.  It is anticipated that more Wyoming residents will begin to seek and receive care with the opening of this new clinic site

Additional Strategies:

Medical Home Promotion for CSH clients

Public Health Nurses (PHNs) educate Children’s Special Health (CSH) program clients and families about the importance of a medical home. CSH families are strongly encouraged to select a medical home and follow up on all well-visit checks. Due to the rural and frontier nature of Wyoming, many families lack access to a true medical home. In these cases, state and local care coordinators (CSH staff and public health nurses) encourage and support families in identifying and establishing relationships with their child’s primary care provider. Appointment letters are sent to families and providers according to the periodicity schedule reminding them when a well-visit is due.

Wyoming Primary Care Association Patient-Centered Medical Home Summit

The CHPM served as a panelist at the Wyoming Primary Care Association’s Patient-Centered Medical Home (PCMH) summit in January 2019. This was the second year that the MCH Unit presented on the importance of medical home for the CSH population. At this summit, the CHPM presented to Wyoming medical providers on the value of adopting PCMH as a standard of care and the importance of aligning with the American Academy of Pediatrics (AAP) Bright Futures Guidelines, 4th Edition.

Promotion of Telehealth Services

In addition to promoting access to medical homes, MCH is interested in improving general access to care across our frontier state. One effort to increase access to care is a partnership between the WDH and the University of Wyoming to expand telehealth services. HIPAA-compliant Zoom licenses and technical assistance were given to healthcare providers (clinics, hospitals, independent providers, etc.) who wished to begin telehealth services or to expand their use of telehealth. As of May 2019, 372 Zoom licenses were issued through the Wyoming Telehealth Network (WyTN).  This includes 30 PHN offices and 19 Women, Infants & Children (WIC) offices.

In 2016, 17.9% of Wyoming adolescents with special health care needs and 14.2% of adolescents without special health care needs received the necessary services to transition to adult health care. The majority (82%) of Wyoming parents of adolescents with special health care needs reported that their child did not get the services necessary to transition to adult care.

Strategy 1: Train Children's Special Health nurses on how to conduct a transition readiness assessment

During Summer 2018, the CSH Program provided virtual training series for PHNs and Tribal MCH Nurses. The trainings provided information about programs, services, and resources available to families with children with special health care needs. Topics covered include Medicaid/Kid Care CHIP (State Children’s Health Insurance Program) eligibility, travel assistance, Developmental Disabilities Waiver, UPLIFT (Wyoming’s Family Voices affiliate), SSI, WYhealth (Case Management Program for Wyoming Medicaid), Wyoming 211, Help Me Grow, Children’s Mental Health Waiver, Early Intervention and Education program (Part B and Part C), Parent Information Center (PIC), and health care transition for young adults. All trainings included a follow-up survey to better understand the utility of the information provided.  In addition, all trainings were recorded and made available on a website accessible to all PHNs. CSH staff also made trainings available to Tribal MCH nurses serving CSH clients on Wind River Indian Reservation. Nurses in at least three counties requested additional CSH orientation/training following the web series. A CSH Benefits and Eligibility Specialist implemented in-person training with new nurses as a result of this request. 

Transition from pediatric to adult health care for youth with and without special health care needs was identified as a priority for the YAYAHP and CSH Program. Both programs partnered to develop a training on adolescent transition for PHNs and Tribal MCH Nurses who provide CSH care coordination services to children and youth with special health care needs. The training was offered in September 2018 and recorded for ongoing use for current and new nurses. 

The training reviewed definitions of health care transition, health care transition data, best practices, and how to implement newly developed tools and resources.  The tools were developed by the YAYAHP and CSH program staff using Got Transition resources. 

Strategy 2: Distribute Wyoming modified ‘Got Transition’ materials to families of youth with special health care needs served through the CSH Program

With Wyoming’s participation in the Association of Maternal and Child Health Programs (AMCHP) Adolescent and Young Adult Health Collaborative Improvement and Innovation Network (AYAH CoIIN) and the review of the Got Transition materials by the CSH staff, the CSH Program and partners developed a Wyoming specific transition toolkit for PHNs to use with youth and parent/caregiver enrolled in the CSH Program. The toolkit, which includes Transition Readiness Assessments for parents/caregivers and youth, is designed to identify and respond to gaps in knowledge about health care transition and guide annual discussions with youth and parent/caregiver starting when the client turns age 14. A fact sheet containing transition issues and community contacts is also sent to CSH clients turning 18 and at age 19 and is part of the health care transition discussion the PHN has with the youth and parent/caregiver during their annual renewal.

In February 2019, the MCH Unit and MCH Epidemiology Program formally launched the implementation of health care transition assessments for youth and young adults as part of the CSH annual renewals with a strong emphasis on quality improvement. Preliminary evaluation results show that parents and youth alike appreciate learning about the importance of health care transition. Parents were also pleased and, at times surprised, when they learned that their children wanted to be involved in future health care discussions and decision-making. Finally, PHNs interviewed to-date report that discussion about health care transition adds an interesting dimension to the annual clinical visit.

Response to the CSH Transition initiative has been positive. Adrienne Tatman, RN, CLC (Sheridan County Public Health) reported “My client's mother thought the health care transition was very helpful and a great way to help her daughter become her own advocate. During our meeting, my client actively took part in developing her care plan.  The family also expressed that their eldest would have benefited from this transition assistance and expressed gratitude it is now part of the CSH experience”. 

Another public health nurse, Lori Bickford, RN, BSN, MS (Weston County Public Health) said “I witnessed a young teenage girl become excited about gaining independence in making her own appointments. The parent was very supportive and eager to help her learn how to do this on her own.  As the nurse completing this paperwork for the first time, I felt like it was a seamless process and stimulated meaningful conversation between myself, the client and her parent.”

Currently, the CSH Program continues to provide limited gap-filling financial assistance and care coordination services to CYSHCN and their families and to work on improving health care transition for Wyoming families of children and youth with special health care needs. The program actively served 634 CSH clients during the past fiscal year.

Other CSH Program Activities

The MCH Units’ overall priority of supporting continuous quality improvement of our care coordination services provided to our children with special health care needs clients and families served on our Children’s Special Health (CSH) program. Internal chart audits are being conducted to ensure uniform compliance is happening and learn ways to improve.

In 2018, program staff updated the CSH program brochure to better inform our clients and providers of the benefits of enrollment in our Children's Special Health (CSH) program.  Programs highlighted in our brochure include CSH (children with special health care needs), Maternal High Risk, Newborn Intensive Care and Genetics Clinic services.

The MCH Unit collaborates with Wyoming Medicaid to offer emergency travel assistance to alleviate barriers to receiving care with out-of-state specialists. 

CSH Benefits and Eligibility Specialists (BES) each maintain a desk manual.  In late 2017, CSH staff began developing a comprehensive desk manual for all staff to promote uniform adherence to procedures and for succession planning.  Caseload of the CSH program is distributed amongst three BES.  The purpose of the desk manual is to have standards documented for how caseloads are worked similarly. The desk manual will be complete by Fall 2019.