NPM-11: Percent of children with and without special health care needs, ages 0 through 17, who have a medical home

Annual Report FY21:

This Performance Measure was achieved. The Performance Objective was 47.0 and the Annual Indicator was 57.2.

Program Activities:

In FY21, Integrated Services Program (ISP) convened a Children with Special Health Care Needs (CSHCN) General Stakeholder Group that self-divided into two distinct committees: Medical Home Committee and Transition to Adult Healthcare. With statewide transition work underway with major players, the CSHCN Stakeholder Group encouraged efforts on transition work and suggested postponing work on medical home until after the end of the 2020 calendar year.

In February 2021 the Medical Home Committee met monthly to align work with that being done by the Transition subcommittees with a preliminary plan to: (1) organize and unite existing education materials to market to providers and families on importance of medical home; (2) continually research best practices to educate the public on the importance of the medical home; (3) continue to evaluate and identify possibilities of a database to track care coordination efforts for CSHCN in conjunction with statewide efforts to unify and facilitate patient service delivery and interagency communication; (4) scan the state for status on pediatric medical providers and specialists who utilize or desire to utilize telehealth and create an inventory of providers to use as a referral resource; (5) provide ongoing outreach and follow-up to encourage providers who have been trained to continue to incorporate the components of medical home; (6) market to and educate pediatric providers on care coordination support available to them through the Integrated Services Program to enhance their Medical Home.

ISP continued to fund both the Utah Children's Care Coordination Network (UCCCN) and a portion of Utah’s costs to maintain and upgrade the Medical Home Portal. Additionally, ISP collaborated with their staff and family representatives to review and contribute to content and Spanish translation of resources contained on the Portal. ISP staff, including care coordinators, contracted through four local health departments, actively participated in the UCCCN monthly meetings and contributed to statewide care coordination and problem solving through the Network's list serve.

The ISP program manager meets monthly with UCCCN staff to plan and coordinate the yearly agenda and monthly meetings. ISP staff participate in weekly care coordination activities with the University of Utah Developmental Assessment Clinics through their patient case conferences. The CSHCN Bureau meets regularly with the Home Visiting Services and Support Program and the Early Childhood Utah Program (both in the Bureau of MCH), the Family to Family Health Information Center; Utah Parent Center; Help Me Grow, the Utah Oral Health Coalition; the Division of Child and Family Health Services; Child Protective Services; and the Division of Substance Abuse and Mental Health.

Accomplishments / Successes:

In FY21, Utah’s Bureau of Children with Special Health Care Needs (CSHCN) including the Integrated Services Program (ISP), found itself enmeshed in the COVID-19 pandemic and worked with both internal and external partners and stakeholders to adapt to an environment shaped by policy and procedure that changed almost daily. ISP was able to adapt wide care coordination efforts and its small clinical services program to a telehealth/teleconsultation environment while ensuring COVID-infection control policies were implemented, modeled and followed by state staff to safeguard patients and local and rural staff.

ISP, CSHCN, and the Department implemented protocols for virtual visits, how to obtain consent and release of information, documentation of these permissions, and researched nationwide best practices on these legal documents, vetting them with legal counsel with the State’s Attorneys General. In February 2021, the Medical Home Committee began to: (1) meet monthly to review the June 2020 Statewide needs assessment; (2) evaluate work that had taken place with the Transition to Adult Healthcare Subcommittees and emulate best practices determined therein; (3) evaluate closed-loop referral systems, both commercial and proprietary; (4) determine how the Utah Children’s Care Coordination Network (UCCCN) could be leveraged to promote the medical home and continue to provide ongoing training to care coordinators and practice managers; (5) collaborate with the Medical Home Portal to promote care coordination, care planning, shared resources, and peer to peer support; (6) evaluate the use of telehealth across the state as a means of enhancing the medical home model; and (7) explore training options for providers and practices on enhancing the medical home.

The CSHCN Bureau was the sub-recipient of a HRSA American Rescue Plan Act grant administered through the Association of Maternal and Child Health Programs (AMCHP) through which the Early Hearing Detection and Intervention Program (EHDI) purchased and placed audiology equipment in rural health districts to allow for remote testing and newborn hearing follow up; and ISP purchased Chromebooks and cellular hotspots to allow families with limited access to technology to more readily participate in telehealth and tele-evaluation activities. EHDI trained several of the ISP care coordinators in both the rural health districts and along the populous Wasatch Front, how to place probes and utilize equipment so that remote EHDI audiologists could perform screening and follow-up testing. The ISP team, including the care coordinators at the local health departments, provided 1,889 care coordination encounters; 310 clinical encounters with the nurse practitioner, speech pathologist, and psychologist, to 439 unique patients.

Summary of successes and accomplishments on “Moving the Needle” in relation to NPM-11 (July 1st, 2020 - June 30th 2021):

• Beginning in February 2021, the Medical Home Committee met monthly to evaluate medical home standards, curricula, databases, care coordination efforts, marketing, and educational efforts for the public, medical, and service providers; and to formulate activities to promote the medical home.
• The CSHCN Bureau adapted policies, procedures, and practices to provide evaluation, assessment, and care in a safe and efficient telehealth environment.
• The CSHCN Bureau was the sub-recipient of a HRSA grant through AMCHP that allowed placement of audiology equipment in rural sites for tele-audiology evaluation; and purchase and placement of Chromebooks and cellular hotspots in rural and underserved urban sites to encourage the use of telehealth where families have limited access to these technologies.

Challenges / Gaps / Disparities Report:

Challenges:

FY21 COVID-19 challenges prevailed. Although CSHCN programs were able to adapt protocols and procedures to function in a locked-down environment, many families were reluctant to participate in home programming activities and telehealth evaluation and assessment because they were in survival mode. Families often found it difficult to fit in other types of visits, including evaluation and diagnosis, while simultaneously juggling on-line classrooms for their children. Many parents were working from home, however, an even bigger challenge was for those who were not: daycare and support services to help families take care of children while they worked made daily living difficult. An overworked and understaffed healthcare workforce also contributed to a lack of available services in the community.

Within the ISP team, many of the care coordinators at the four local health departments with which we have contracts, are also public health nurses. They were pulled away to work on COVID-related activities including surveillance, tracking, contact tracking, immunization and coverage for other public health nurses and workers who were either sick or quarantined with the virus. As such, some of our medical home work and CSHCN outreach work took a back seat to the pandemic. During this time, three of four local health departments either lost or transferred their CSHCN care coordinators to other public health programs. The hiring process could take weeks to months to replace the position. In the interim, ISP staff and other care coordinators at the local health departments covered the areas with missing staff. Once new staff was hired, ISP then had to train and orient them to bring them up to speed. Even with our best efforts and constant communication, long-distance coverage did not always contribute to the most effective continuity of care that we would have wanted. Ultimately, however, all positions are fully filled at this time.

Emerging Issues:

The increasing shortage of behavioral and mental health providers leaves the medical home less well-supported than it has been in the past. Medical providers are often at a loss as to where to refer their young patients with behavioral and mental health concerns. This shortage includes psychologists, licensed clinical social workers, behaviorists, and others who support families of children with special health care needs. Many behavioral and mental health agencies and practitioners have converted some of their services to telehealth, however, this doesn’t completely compensate for the overall shortage of providers or lack of qualified and certified personnel in the workforce.

The COVID pandemic has been divisive along political lines. With conspiracy theory, misinformation, and public opinion across social media and the internet; vaccination, masking, and other public health safety measures have been politicized and families are often left wondering what to believe and whom to trust. Our public health programs appear now to be less trusted and more scrutinized than they have been in the past.

Another challenge presented during FY21 was the impending merger/consolidation between the Department of Health and the Department of Human Services in the state. Preliminary work was begun to address efficiencies and redundancies between the two agencies, however, a certain fear of the unknown had left the workforce unsure about programs, staffing, alignment, and job stability. The current CSHCN Bureau Director was appointed as the Director of the Division of Family Health in the new Department of Health and Human Services, which has helped to ease this transition and provide continuity between programs that had been in the Department of Health and those that had resided in Human Services, looking for ways to improve efficiency and remove redundancy.

In January 2022, the ISP's pediatric psychologist left for employment with another organization. After two months, and three geographically extensive job postings for the position, with no applicants, the position remains unfilled. This presents a challenge for families in our rural health districts who already experience a greater than normal dearth or qualified behavioral health providers within and reaching out to those communities.

Agency Capacity/Family Partnerships/Collaboration:

The CSHCN Bureau consistently seeks to partner with other organizations such as those focused on physical or behavioral/mental health, social services, support and referral, and parent-led and peer to peer organizations. The Bureau has enjoyed successful and cooperative collaborations with many community stakeholders and local health departments, including the four that partner with the ISP. Many of these organizations work together on committees to improve the system of services and better serve families of children with special health care needs.

The Medical Home Portal includes developmental and social support information written and drafted by parents of children with special health care needs. Both the Utah Parent Center and Utah Family Voices (F2F HIC) partner with parents to provide peer to peer support and develop curricula that supports both the medical home and transition. The MCH Bureau houses both Early Childhood Utah and the Home Visiting Programs, both of which affiliate and collaborate with many of the same players. The ISP manager meets weekly with the providers and staff at the University Developmental Assessment Center to provide guidance and support for the children with special health care needs they serve and accept referrals for care coordination within ISP. In addition, the ISP program manager also serves as a member of the Early Childhood Utah Advisory Council, a multi-organizational council charged with unifying and enhancing the early childhood experience from birth through age 5.

In FY21, the CSHCN Bureau sought to partner with the Utah Department of Human Services, Intermountain Health Care, local health departments, University Department of Psychiatry, Utah Pediatric Partnership to Improve Healthcare Quality, Project ECHO, and The Children’s Center to explore a pediatric mental health grant. Ultimately it was decided we would not apply, however, it started a dialogue about pediatric mental health among the partners that has continued.

Report of ESMs related to NPM-11

ESM 11.2 - Percent of families of CSHCN who report a change in knowledge on the importance of the medical home.

Goal/Objective:

Families of CSHCN understand and can articulate the importance of seeking care within a medical home.

Significance of ESM 11.2:

Parents who understand the importance of the medical home may encourage their providers to incorporate the components of the medical home.

Notes & Comments:

Baseline was to have been established in Year One, however, the Medical Home Committee determined that this ESM really did not measure how well Utah is doing building and improving "medical homeness."

ESM 11.2 Progress Summary:

Year one was intended to establish a baseline, develop curriculum, marketing strategies, referral processes, follow-up, and QI/satisfaction survey methods. In FY23, this ESM will be discontinued. A new ESM has been added in which families are surveyed to measure how practices participating in the Utah Care Coordination Network are viewed for implementing and improving components of the medical home.

 

ESM 11.3 - Percent of children with special health care needs population served by the Bureau who have documented care coordination follow-up as part of a medical home model of care.

 

Goal/Objective:

Families are supported in their efforts to attain comprehensive care in a medical home through supported care coordination.

 

Significance of ESM 11.3:

Emphasizing care coordination has also been recognized by the Association of Maternal and Child Health Program’s (AMCHP) Innovation Station through projects in Virginia and Oregon as emerging and promising practices. Similar components to their care coordination programs will be modeled by Utah in developing our programs.

Notes & Comments:

FY21 established a baseline. FY22 is the first year to report that baseline number.

ESM 11.3 Progress Summary:

All children and youth with special health care needs referred to the Integrated Services Program receive an intake assessment. Not all families require additional care coordination. However, the majority of families received care coordination follow-up after intake.

ESM 11.4 - Percentage of families who receive services from a practice participating in the Utah Children’s Care Coordination Network (UCCCN) who report satisfaction with the components of the medical home.

Goal/Objective:

As UCCCN practices are trained and improve medical home related services, satisfaction by patients and families will increase.

Significance of ESM 11.4:

The American Academy of Pediatric defines the medical home as:

• Accessible: Care is easy for the child and family to obtain, including geographic access and insurance accommodation.
• Family-centered: The family is recognized and acknowledged as the primary caregiver and support for the child, ensuring that all medical decisions are made in true partnership with the family.
• Continuous: The same primary care clinician cares for the child from infancy through young adulthood, providing assistance and support to transition to adult care.
• Comprehensive: Preventive, primary, and specialty care are provided to the child and family.
• Coordinated: A care plan is created in partnership with the family and communicated with all health care clinicians and necessary community agencies and organizations.
• Compassionate: Genuine concern for the well-being of a child and family are emphasized and addressed.
• Culturally Effective: The family and child's culture, language, beliefs, and traditions are recognized, valued, and respected. Practices who implement all or strive to achieve at least some of these standards work towards fulfilling a "triple aim": improved patient experience, increased quality, and decreased costs.

Notes & Comments:

Surveys for this new ESM for FY23 have not yet been developed. FY23 will be a baseline year as survey instruments are developed and distributed among pilot practices, then more fully among participating UCCCN practices.

ESM 11.4 Progress Summary:

This is a new ESM for FY23. The partnerships within UCCCN shall be utilized to formulate effective survey instruments and to be distributed and analyzed among participating practices and families served by those practices.

 

NPM-12: Percent of adolescents with and without special health care needs, ages 12 through 17, who received services necessary to make transitions to adult health care

Annual Report FY21:

Program Activities:

This Performance Measure was achieved. The Performance Objective was 13.5 and the Annual Indicator was 14.0.

The CSHCN Bureau convened a Stakeholder Workgroup to discuss both National Performance Measures (NPM-11 and NPM-12) aligned with the CSHCN population. The stakeholders selected whether to participate in either a Medical Home Committee or a Transition to Adult Healthcare Committee, with some choosing to serve on both. The Transition Committee initially met and those members then further agreed to participate in one or more of the following sub-committees: Curriculum; Marketing; Referral and Follow-up; and Quality Improvement and Patient Satisfaction. Each of these subcommittees met monthly.

These subcommittees worked diligently to review nationally vetted curricula; investigate marketing strategies that would be inclusive of youth and young adults of color, LGBTQIA+, rural versus urban, and intersectionality; survey instruments to evaluate readiness for transition and progress towards completing transition goals; ways to train and recruit practices that worked with both youth and young adults; researched and linked local resources appropriate for transition-aged youth; and discussed creating a "no wrong door approach" for transition to adult healthcare state wide.

The ISP program manager continued to work with the Utah Parent Center on the Transition University curriculum project which included a multi-faceted team of subject-matter experts from education, vocational rehabilitation, social services, and health. The CSHCN Bureau worked on a transition to adult healthcare website with links to local and statewide resources. ISP continued to fund the Utah Children's Care Coordination Network (UCCCN) which provides education to care coordinators, practice managers, and nurse care managers across the state on topics related to general pediatrics, community resources, and transition support and services.

The CSHCN Bureau Director and the ISP Program Manager participated in the Teen to Adult Healthcare Governance Committee monthly meetings sponsored by Intermountain Health Care. The ISP program manager participates on the Annual Healthcare Transition Summit planning committee with IHC, University of Utah, and Utah Parent Center Staff.

Accomplishments / Successes:

The Curriculum Subcommittee ultimately selected the Got Transition nationally vetted curriculum, and made some modifications to the readiness assessment and age-specific guidelines that were paired with local resources. The Marketing Subcommittee reviewed existing messaging on transition; created a small marketing piece; reviewed the 2020 MCH/CSHCN needs assessment; looked at inclusivity in marketing; reviewed multiple media platforms for distribution of messages. The QI/Satisfaction Subcommittee created several iterations of patient satisfaction surveys, then looked for the best platforms to share the survey with families. The Referral and Follow-up Committee looked at recruitment of practices and families and worked with IHC, the University, UCCCN, the Utah Parent Center to determine the best way to ensure families and youth were given a consistent message and provided with a uniform approach to transition, regardless of where they entered the system.

The Utah Parent Center completed their curriculum for Transition University and piloted the course with parent and youth audiences, albeit in a virtual environment. Feedback allowed for some modification to the curriculum. The Second Annual Health Transition Summit was held in a virtual environment and was considered a success by both speakers, guests, and participants. Several specialty clinics and pediatric practices implemented transition to adult healthcare policies and/or procedures to standardize the transition process in their respective offices. These included: Spina Bifida Clinic; Colorectal Clinic; Hemophilia Clinic; Cystic Fibrosis Clinic; Wasatch Canyons Behavioral Health; University of Utah South Main Clinic; Wasatch Pediatrics; and Integrated Services Program.

Several clinics worked on transition planning with youth at various ages some of which included readiness assessment, and some clinics actually transitioned young adults to adult medicine: Integrated Services Program-completed 28 transition plans; Cystic Fibrosis- 300 patients ages 0-18 were seen, transition is discussed with all patients ages 15-18, with 16 patients successfully transferring to adult CF clinic; Colorectal Clinic-approximately 50 patients had transition plans, with 3 transitioning to adult medicine; Hemophilia Clinic-88 youth had transition plans, with 16 transitioning to adult hemophilia providers; University South Main Clinic-182 foster care youth with transition plans, 5 transitioning to adult medical providers, 589 youth with transition plans, with 20 transitioning to adult medical providers.

Summary of successes and accomplishments on “Moving the Needle” in relation to NPM-12 (July 1st, 2020 - June 30th, 2021):

• The CSHCN Bureau successfully convened weekly transition to adult health care subcommittee meetings to establish curriculum, standards, quality improvement measures and patient satisfaction, referral mechanism, and marketing strategies.
• Multiple specialty and primary clinical practices established transition to adult healthcare policies and procedures to work toward creating a statewide standard.
• Baseline data from select clinics who were able to collect indicates approximately 937 youth had transition plans in place in FY21, with 60 young adults successfully transitioning to adult medical providers.

Challenges / Gaps / Disparities Report:

Challenges:

When working with families of youth in transition, transition to adult healthcare alone is not the only topic that needs to be addressed. ISP care coordinators and the program’s transition specialist have noted that frequently these families have variable needs that run the full spectrum of services provided by our care coordinators.

Often parents are not able to pursue helping their child/youth/young adult reach healthcare transition milestones when they themselves face personal financial, medical, and behavioral/mental health challenges themselves. ISP care coordinators have worked with some of these parents to achieve stability first, before addressing healthcare transition. This may include applying for disability; finding stable housing; seeking employment; connecting with physical and mental healthcare; and other critical topics.

Many practices and service organizations, ISP included, have found it challenging to track transition-aged patients with existing EMR systems, and then systematically report on those patients. Hence, establishing continuity in reporting continues to be an ongoing discussion with our partners as many track their transition-aged youth on Excel spreadsheets and non-EMR databases. While much progress is being made on the pediatric side of things, much work remains to be done on the adult side of the equation. Many adult providers are reluctant to take on challenging patients with multiple physical challenges, intellectual disability including autism spectrum disorders, and technology-dependent young adults.

Emerging Issues: Through the consolidation of the Departments of Health and Human Services, the CSHCN Bureau and ISP are discovering other transition-related programs that exist within the new organizational structure. ISP is seeking to align and participate with these programs and serve on these committees to provide a more comprehensive service delivery model to our mutual families and patients. The Utah State Board of Education (USBE) has convened a vocation/post-graduation heavily focused advisory committee to explore outcomes for youth within the special education system. ISP and other CSHCN staff serve on the advisory committee and work on various subcommittees to bring healthcare transition to the table and have it included in a comprehensive discussion and plan. Transition University through the Utah Parent Center has been offered virtually for several sessions, and has now been taken on the road for three live sessions that were funded by the USBE. These have been received favorably by both parents and youth.

Agency Capacity/Family Partnerships/Collaboration:

Collaborative partners included the Utah Parent Center, Utah Family Voices, Help Me Grow, Medicaid, Social Security Administration, Utah State University Center for Persons with Disabilities, Division of Services for People with Disabilities, Utah State Board of Education, Vocational Rehabilitation, Work Ability Utah, and the Utah Developmental Disability Council. These agencies work to support families and the community through outreach, training, mentoring, and services such as support for employment and continued education.

The Utah Children’s Care Coordination Network and Medical Home Portal provided training and support for care coordinators and family partners from a variety of private provider offices and healthcare organizations in the state. The Utah Parent Center held virtual sessions of Transition University (TU) for both parents and youth in transition. The TU curriculum is comprehensive and includes topics such as guardianship, supported decision making, daily living skills, financial awareness and planning, medical transition, housing, employment, and post-high school education and training. ISP participated with two local school districts to provide information to families in transition at virtual transition and agency fairs sponsored by the districts during the height of COVID-19. ISP and the CSHCN Bureau participate with the Utah State Board of Education in their statewide transition work and serve on their advisory board and various sub-committees. This partnership was established through the Coordinating Council for Persons with Disabilities, a state established committee the CSHCN Bureau Director serves on, with their primary goal to coordinate state agencies’ work. The CSHCN Bureau also actively works with Intermountain Health Care’s Teen to Adult Healthcare Governance Committee that meets monthly to promote transition and recruit and train healthcare providers in a standardized transition curriculum.

Report of ESMs related to NPM-12

ESM 12.1 - Percent of children with special health care needs who report the transition plans assisted them (report a change in knowledge, skills or behavior) in transitioning to adulthood.

Goal/Objective:

Youth and adolescents with active transition plans will be more likely to complete the steps for successful transition to adulthood.

Significance of ESM 12.1:

Having a transition plan is critical for services to be seamlessly transferred to adult-serving providers. There is strong, recent evidence as summarized by the literature in Jones et al. (2017) and Lemke et al. (2018) that speak to the importance of sharing the plan with youth and families and for having a transition policy within a practice: Jones, M. R., Robbins, B. W., Augustine, M., Doyle, J., Mack-Fogg, J., Jones, H., & White, P. H. (2017). Transfer from pediatric to adult endocrinology. Endocrine Practice, 23(7), 822–830. https://doi.org/10.4158/EP171753.OR. Lemke, M., Kappel, R., McCarter, R., D’Angelo, L., & Tuchman, L. K. (2018). Perceptions of health care transition care coordination in patients with chronic illness. Pediatrics, 141(5). https://doi.org/10.1542/peds.2017-3168.

Notes & Comments:

Year one established a curriculum, marketing strategy, referral and follow-up mechanisms, and QI/satisfaction surveys. We have implemented an adapted-for-Utah Got Transition curriculum. Work continues as we create, vet, and implement a consistent statewide survey instrument and platform to measure positive progress toward healthcare transition goals and satisfaction with patient and family experience.

ESM 12.1 Progress Summary:

This was a new ESM for FY21. Robust partnerships have been fostered between ISP/CSHCN and several community partners including two hospital systems to continually assess, develop, market, and implement a universal process, statewide, for transition to adult medicine. A standard statewide survey has yet to be determined and implemented. Work will continue in FY23 to create, vet, and send to families/youth through a mobile platform.

ESM 12.2 - Percent of adolescents and youth with special health care needs ages 12-18 who receive a transition plan.

 

Goal/Objective:

Youth with special health care needs will have an active and modifiable transition plan in place.

 

Significance of ESM 12.2:

Having a transition plan is critical for services to be seamlessly transferred to adult-serving providers. There is strong, recent evidence as summarized by the literature in Jones et al. (2017) and Lemke et al. (2018) that speak to the importance of sharing the plan with youth and families and for having a transition policy within a practice:

Notes & Comments:

Year one will establish a baseline. Years 2-5 annual projected performance increase will be established once baseline is calculated at the end of Year One. FY21 numbers reflect a decrease in live interactions with families and youth at transition and agency fairs where transition planning is discussed and begun.

ESM 12.2 Progress Summary:

Transition planning numbers for FY2022 were based upon statistics provided by the Integrated Services Program (Utah Department of Health) and the Utah Parent Center/Utah Family Voices.

ESM 12.3 - Percent of providers trained in transition who created a transition policy for adolescents and youth in their practice.

Goal/Objective:

Providers trained on the importance of transition have an active transition policy in place.

Significance of ESM 12.3:

Jones, M. R., Robbins, B. W., Augustine, M., Doyle, J., Mack-Fogg, J., Jones, H., & White, P. H. (2017). Transfer from pediatric to adult endocrinology. Endocrine Practice, 23(7), 822–830. https://doi.org/10.4158/EP171753.OR. Lemke, M., Kappel, R., McCarter, R., D’Angelo, L., & Tuchman, L. K. (2018). Perceptions of health care transition care coordination in patients with chronic illness. Pediatrics, 141(5). https://doi.org/10.1542/peds.2017-3168.

Notes & Comments:

Year one established a curriculum, marketing strategy, referral and follow-up mechanisms, and QI/satisfaction surveys. Provider training curriculum is being refined and will be published on the website, once vetted by ISP/CSHCN and our community partners, for providers who are seeking to implement transition to adult medicine within their practices. This will be a universal and unified statewide curriculum. Year Two will establish baseline numbers of providers who have implemented the transition to adulthood policy and processes.

ESM 12.3 Progress Summary:

This was a new ESM for FY21. Robust partnerships have been fostered between ISP/CSHCN and several community partners including two hospital systems to continually assess, develop, market, and implement a universal process, statewide, for transition to adult medicine. Several Intermountain Health Care (IHC) clinics were trained in transition, along with a couple pediatric practices, and the Integrated Services Program.

 

Other activities in the Children With Special Health Care Needs domain that contribute to improvement in the National Outcome Measures:

 

Utah works to adhere to the three-tier framework outlined in the MCH Block Grant guidance. While the focus of most activities is the ESM →NPM→ NOM framework, activities on improving NOMs outside of the NPMs transpire in parallel. The following programmatic activities also work to improve outcomes in this domain.

National Outcome Measures (NOM)

NOM 17.2: Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system

The mission of the Child Health Advanced Records Management (CHARM) is to provide public health data through an integrated, secure electronic system to health care providers to coordinate care, and improve efficiencies and health outcomes of the children and families they serve. The CHARM system creates an electronic health record for children in Utah that can be printed and given to parents/guardians to assist MCH/CSHCN populations (infants, children, teens, mothers, families) and programs with continuity of care and follow-up. This record increases the effectiveness of child health care services by providing a secure confidential way for authorized health care programs and partners to share public health data and track the health status of children such as: newborn hearing, heel-stick, and critical congenital heart defect (CCHD) screening results, immunization status, referrals, and clinical services received.

CHARM supports the coordination of services the child has received by sharing accurate and real time data with programs and medical home providers that serve MCH and CSHCN populations statewide and in the rural areas of the state. The CHARM system has demonstrated that it reduces duplicate tests and expedites appropriate referrals, services, and follow-up. Because a child's health information is readily available through CHARM, the medical home knows what screening tests or referrals have or haven’t been done, and subsequently, reduces health care costs. It also eliminates referring families for services they don’t need which saves parents time.

During the past grant year, the CHARM program increased by 83% from the previous year, the number of web portal users that have access to immunization histories, and newborn hearing, heel-stick, and CCHD results. This increase was due to funding the CHARM Program received from a CMS HiTech HIT grant to hire an Outreach Coordinator to onboard Medicaid providers, Community Health Centers, other provider clinics, and health programs to use the CHARM Web Portal.

As stated in NOM 13, the CHARM Program integrates with the Early Hearing Detection and Intervention (EHDI) and Baby Watch Early Intervention (BWEI) Programs to provide hearing screening results to health care providers to ensure that a child with special health care needs receives appropriate follow-up services with EI and the child’s medical home. CHARM continued to assist these efforts to support special health care needs of children, parents, and providers. In addition, CHARM provides immunization information and hearing screening results to the BWEI Program via a CHARM tab in their BTOTS system. EI providers in urban and rural areas of the state can click on the tab to get this information on a child they are already looking up in their BTOTS system. The BWEI program also shares limited IFSP information (enrollment and referral date, and EI advisor name) with the EHDI Program through CHARM. EI Providers get consent from parents to share this information with the EHDI program during in-take. The sharing of the BWEI information continues to help the EHDI program follow-up on children they have referred to BWEI to make sure these kids are receiving services, and timely treatment that they need, to maximize their developmental and communication potential.

 

NOM 17.3: Percent of children, ages 3 through 17, diagnosed with an autism spectrum disorder

The Autism Systems Development Program (ASDP) in the Bureau of CSHCN seeks to advance, educate and empower the lives of individuals affected by Autism Spectrum Disorder (ASD) in Utah by monitoring occurrence, reducing the age at first diagnosis, facilitating research, and providing education and outreach.

ASD prevalence and its dissemination to the public.

Accurate ASD prevalence estimates are critical for driving policy decisions and informing other MCH and CSHCN Programs on NPMs on care coordination and transition.

In Utah, ASD prevalence is measured by The Utah Registry of Autism and Developmental Disabilities (URADD). URADD, a joint effort between the Utah Department of Health and the University of Utah Department of Psychiatry, is a statewide, population-based surveillance system for autism spectrum disorder (ASD) and developmental disabilities (DD) and was established in 2002. In an effort to determine health disparities, URADD has developed ASD prevalence estimates by age and location (Urban, Rural and Frontier) and race/ethnicity.