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

 

Annual Report FY22:

 

This Performance Measure was NOT achieved. The Performance Objective was 57.3% and the Annual Indicator was 55.7%.

 

Program Activities:

The Medical Home Committee has been meeting monthly since February 2021 to mirror work being done by the Transition subcommittees. Alignment with the Transition work plan was a logical choice to (1) organize and evaluate existing evidence and educate providers, families, care coordinators, and other partners on the importance of the medical home; (2) research best practices to educate the public on the importance of participating in a medical home; (3) continue to evaluate and select 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 to incorporate components of the medical home into their practices; and (6) market to and educate pediatric providers on care coordination support available to them through the Integrated Services Program (ISP) 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 and began negotiations with the University of Utah to establish a new five-year contract beginning in FY23. Medical Home Portal staff began attending Integrated Services Program (ISP) team meetings once a month to provide ongoing training and solicit feedback and input for both directory and content. The ISP team, which includes care coordinators from four local rural health departments, attended the monthly UCCCN training and information sessions and contributed to statewide group knowledge both through formal presentations on Medical Home, care coordination principles and practices, Title V, transition to adult healthcare, and provided solutions and resource links for care coordinators seeking help with challenging cases for CYSHCN in their respective practices and communities. The ISP program manager is actively involved each month with the planning team for the monthly UCCCN meetings, and helps to develop the agenda and survey and membership activities. ISP continued to fund a portion of family advocacy and leadership activities through the Utah Parent Center/ Utah Family Voices.

The ISP Program Manager participates in weekly care coordination activities with the University of Utah Developmental Assessment Clinics through their patient case conferences, and many patients are subsequently referred to ISP care coordinators to help families connect with supports, services, and specialists. With preliminary work being done on the consolidation between the Utah Department of Health and the Department of Human Services, ISP staff met with and coordinated services for CYSHCN with Coordinated Care and Regional Supports, Wraparound Services, the Division of Child and Family Services (DCFS), Juvenile Justice and Youth Services, Office of Substance Use and Mental Health, and Child Protective Services.

 

Collaboration continued within our CSHCN Office with Early Hearing Detection & Intervention (EHDI), Fostering Health Children, Utah Birth Defect Network (UBDN), and Autism Systems Development, and Early Intervention. Our MCH partners included Home Visiting, WIC, and Maternal Mental Health.

 

Accomplishments / Successes:

Although the FY22 performance measure was not achieved, Utah’s rate of 55.7% of CSHCN having a medical home compared to 42.0% in the U.S. overall from 2020 to 2021, ranks Utah as the highest in the nation. Specifically, Utah performed better than the U.S. in the usual source of care component, at 80.6% compared to 73.4%. Within Utah, the components of family-centered care (87.1%) and referrals if needed (90.2%) had the highest prevalence.

 

In FY22, ISP was well on its way to providing direct clinical services and care coordination through remote technology, and was also able to add in limited live consultation with the Attending Physician or Registered Nurse (APRN) and psychologist when needed. The program’s clinical staff including the APRN, psychologist, occupational therapist (OT), and speech pathologist were scheduling and coordinating services with families through both in-house and rural care coordinators via the four contracted local health department sites.

 

With a great need statewide for autism evaluation and diagnosis, ISP clinical and care coordination staff were faced with the challenge of scheduling multiple virtual visits with families to create an acceptable diagnostic report to ensure both public and private payers would cover the costs for evaluation and diagnosis and subsequent therapies based upon that diagnosis but performed in a virtual, not physical world. Diagnosing autism and other developmental disabilities is time consuming even in the best of circumstances, and it became even more so in an almost virtual environment. However, the team rose to the occasion by problem solving on the fly when technology went askew, school testing or parent reports had not been submitted or other incidental events occurred that might delay evaluation or diagnosis. Ultimately, the ISP team ensured family needs were met with the least amount of disruption to service possible.

 

Unfortunately, the ISP psychologist left in January 2022 to take a position with another organization, and the position remained unfilled after several nationwide attempts to recruit. Ultimately, ISP was unable to provide in-house behavioral health diagnosis. Fortunately, we were able to partner with a private entity in Northeastern Utah, who has worked with our team to see rural families for autism evaluation, and has provided testing and evaluation appointments specifically for our rural patients. Virtual visits for both evaluation and diagnosis for not just autism, but other developmental delays, allowed the ISP team to meet families where they are and at times that are convenient for them without additional travel costs, time lost from work and school, and most often in a home environment comfortable to the child, should families choose virtual instead of a live visit.

 

In FY22, the ISP team provided a combined total of 2,825 patient encounters to 553 unique patients. The work of the ISP team, from care coordination to the consultative role of the APRN for developmental pediatric support, enhances the medical home particularly in rural communities where often pediatric offices are sparse or do not exist and the local family practice providers may have limited experience with the CYSHCN population. Frequently, rural community health care providers have a small staff unable to provide the level of coordination required by young patients with more complex needs. The Medical Home Committee met monthly to set priorities for NPM 11, and worked to expand the reach of the medical home through the activities outlined in the previous section. The monthly UCCCN meetings and listserv have been utilized as forums to reach and educate care coordinators and practice managers and share best practices such as care plans, CSHCN registries within the practice, and care notebooks; strategies such as motivational interviewing; community, statewide, and national resources; and peer-to-peer support.

 

Summary of successes and accomplishments on “Moving the Needle” in relation to NPM-11:

• Utah is ranked first in the nation, with 55.7% of CSHCN having a medical home compared with 42% in the U.S. overall. (NSCH 2020-21 combined data set)
• Utah performed better than the U.S. in the usual source of care component for CYSHCN at 80.6% compared with 73.4%. (NSCH 2020-21 combined data set)
• Families of CYSHCN in Utah indicate a high level of receiving family-centered care and referrals as needed at 87.1% and 73.4% respectively. (NSCH 2020-21 combined data set)
• The ISP team delivered supportive care and care coordination to 553 unique patients through 2,825 patient encounters.

 

Challenges / Gaps / Disparities Report:

FY22 continued without a pediatric psychologist on the ISP team and a shift in how ISP served CYSHCN families with direct behavioral health needs, including autism evaluation and diagnosis. The pediatric psychologist role had been open since January 2022, with no applicants even after a nationwide search. Unfortunately, unless families have $1500-2500 cash in hand, the wait for an autism evaluation billed through commercial insurance or Medicaid, from behavioral health providers affiliated elsewhere, could be up to six months. Often, receiving Applied Behavioral Analysis (ABA) therapy or enrolling in other therapeutic services post-diagnosis, if available at all in rural or frontier communities, may also have a significant delay. With no apparent in-house psychological provider option, the team chose to give support to our CYSHCN population through our APRN, OT, and speech pathologist while families waited pre- and post-diagnosis.

 

While not a perfect solution, families were given some home-based strategies to curb or re-train undesired behaviors. The APRN was able to consult with local rural providers with limited CYSHCN experience to help with medication management as warranted. With more families and children immunized for COVID-19, FY22 also found many families seeking more traditional face-to-face services instead of telehealth; however, this could add time onto a family’s wait for a diagnosis when a telehealth visit may be more readily available.

Utah’s most rural local health department lost a care coordinator in August and was unable to fill the position until December. The combined ISP team, both in-house staff and the remaining three LHD care coordinators, provided continuity of care for the families in the area, yet not with the same impact that comes with local knowledge of community resources, customs, culture, and connection.

The lack of behavioral health providers including psychologists, licensed clinical social workers, and behaviorists continues to be a problem across the State, and even more so in rural and frontier areas. Families have long wait times to get appointments for behavioral health and insurance payments can be a challenge. In Utah, behavioral health is a “carve out” service that is contracted by Medicaid with a particular agency in each area of the state. Families on Medicaid must use that service in their area, or be referred by that agency to another organization, if available, that can support the family’s needs. However, many rural communities have no behavioral health support other than the Medicaid contracted agency, which creates a wait time for appointments.

In late 2020, CSHCN received a grant to purchase Chromebooks and remote hotspots that were placed in four local health departments, the ISP office in Ogden, and the Utah Parent Center. Although initially received with great fanfare, and after much notice of their availability, use was not as robust as anticipated. The families that utilized the technology were grateful for the loaned equipment, but many who could have benefitted and knew of the service did not take advantage. Additionally, in the most remote parts of the state where cell coverage is sparse or non-existent, hotspots are unusable where there is no cell tower close enough to send a signal.

Emerging opportunities: The merger/consolidation between the Departments of Health and Human Services, effective July 1, 2022, had many of the staff involved in workgroups and committees to help foster change, reduce redundancies, and create a more efficient workplace. However, there remained an uneasiness with what the overall consolidation would bring, and many questioned where their current programs would align with a new office, division, manager, or other leadership. A general fear of the unknown was pervasive, and some distrust prevailed. CSHCN and ISP felt slightly more reassured when the current CYSHCN Director was appointed as the new Division Director of Family Health. Other partner organizations also felt an unease not knowing how contracts, alignment with programs, current projects, and other tangibles would be affected.

The COVID-19 pandemic helped contribute to a nationwide workforce accustomed to working from home. This meant that many qualified, often licensed or credentialed professionals could live in one state, and work in another. However, to work for the State of Utah, an employee must reside in-state. Given this mandate, many positions for which we posted, such as our ISP psychologist, were difficult, if not impossible to fill, as many qualified in-state candidates could find better paying jobs out of state.

 

Interestingly, though, this brought about new opportunities, both within ISP and how jobs are posted and hired within State employment. Within ISP we had to look for more creative ways to provide psychological care to our families utilizing our community partners. This has strengthened our partnership with those organizations and demonstrated the ongoing tenacity and ability to change and update programs and systems as policy, procedure, and circumstances often dictate, frequently on the fly.

 

Children with special health care needs who lived in households where the highest level of education was a college degree were more likely than others to have a medical home (62.1%), compared to those where high school (49.2%) or some college (45%) was the highest level of education. We did not find any other significant disparities with our review of available data. Based on Federally Available Data, Utah is ranked first in the nation, with 55.7% of CSHCN having a medical home compared to 42.0% in the U.S. overall from 2020 to 2021. Specifically, Utah performed better than the U.S. in the usual source of care component, at 80.6% compared to 73.4%. Within Utah, the family-centered care (87.1%) and referrals if needed (90.2%) components had the highest prevalence. However, CSHCN with two or more Adverse Childhood Experiences (ACEs) were less likely than one with either one or no ACEs to have a medical home. CSHCN who live in homes with a single parent (39.1%) were also less likely than those in homes with two-parents (59%) to have a medical home.

 

Agency Capacity / Family Partnerships / Collaboration:

The CSHCN Office 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. In FY22, the Office was presented with even greater opportunities to partner with sister programs in the Department of Human Services that would eventually be part of a combined Health and Human Services. The Office has enjoyed successful and cooperative collaborations with many local health departments, including the four that partner with the ISP. Many of these organizations, including the local health departments, 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 to adult healthcare. The newly formed Office of Early Childhood houses both Early Childhood Utah and the Home Visiting Programs, both of which affiliate and collaborate with many of the same players, and ISP is working with them to facilitate early childhood care coordination through a newly funded grant their Office received.

 

The ISP manager meets weekly with the providers and staff at the University Developmental Assessment Center to provide guidance and support for the CSHCN they serve and accept referrals for care coordination within ISP. 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 five, and is currently the chair of one of its subcommittees. He also meets monthly with the Office of Substance Use and Mental Health to coordinate pediatric and youth efforts for CYSHCN.

 

Report on ESMs related to NPM-11

 

ESM 11.2: Percent of children with special health care needs population served by the Office 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 office supported care coordination.

 

Significance of ESM 11.2: Emphasizing care coordination has been recognized by the 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.

 

ESM 11.2 Progress Summary: All children and youth with special health care needs referred to the ISP receive an intake assessment. Not all families require additional care coordination. However, the majority of families received care coordination follow-up after intake.

 

 

ESM 11.3: 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 a 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 11.3: 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 that 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.

 

ESM 11.3 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.

MCH Block Grant FY24 Application & FY22 Report

 

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 FY22:

 

This Performance Measure was achieved. The Performance Objective was 15.5% and the Annual Indicator was 19.2%.

 

Program Activities:

 

The formative work that had taken place in the various CSHCN-sponsored inter-agency transition subcommittees (Marketing, Quality Improvement, Curriculum, and Referral and Follow-up) was consolidated into a single Transition Committee in October 2021. This allowed the combined group to meet once a month to further work on progress and focus on strategizing with our partners. Work on transition continued statewide with robust interagency partnership and increased collaboration to align efforts across public and private health systems, and social and support systems and networks.

 

With the GotTransition curriculum selected, and continued technical assistance from The National Alliance to Advance Adolescent Health through an agreement with Intermountain Health (IH), the statewide effort felt more unified as everyone sought to deliver the same message to providers, the public, our families and youth. Both CSHCN and IH began discussions with the Medical Home Portal to consolidate transition-related information on one site, including Utah-specific resources, the Provider Toolkit, and the sample transition policy for practices, along with resource links to information and support. ISP began discussions with the UBDN to see how we could reach target populations in their registry that were within transition age, and began work on a data sharing agreement to do so. The ISP Transition Coordinator continued outreach efforts to former CSHCN patients in the electronic health record who were approaching the upper end of the transition period (ages 17-18) to offer transition assistance.

 

Transition University, through the Utah Parent Center, a comprehensive 101 of all things transition, including health care, began offering their courses both virtually, and then on the road in several rural communities; and a companion workbook vetted by youth was being distributed. The third annual Transition to Adult Health Care Summit was being planned by the multi-agency planning committee, with an October 2021 save the date on the calendar.

 

Accomplishments / Successes:

In reviewing FY22, the most salient success and marker of progress for transition to adult living in Utah is the buy-in and vested interest in promoting transition guidance and support from many public and private sectors that have a profound impact on youth lives. These are state and local educational systems; public, physical, and behavioral health systems; social service and supportive systems; parent support groups; public and commercial third-party payers; and many others. These disparate groups have been able to join various committees, work groups, and forums to dialogue, collaborate, problem solve, produce tangible products and messaging, and create common goals to build a united front to support our youth through this challenging time.

 

Previously, transition work felt disjointed at many levels. Each of the stakeholders had been working on their own mission- and grant-driven transition work, and working hard, but not as effectively, and with a limited niche or reach. Working together has allowed organizations to braid funding; create a standard data dictionary or vernacular for the many facets of transition; share best practices; seek ways to break down barriers for sharing data between organizations; and understand how each part of transition is important and interconnected. We have more awareness of what each other does, and are better able to refer youth and families to one another, which serves their best, interest, and ultimately, establishes best and replicable practices and produces quantifiable and qualifiable data. This contributes to the “no wrong door” approach we are building through consistent messaging. The ultimate takeaway is that together we are stronger.
 

The Transition Committee continued to meet monthly to plan, evaluate, and promote transition activities across the state in conjunction with our partners and stakeholders. The ISP Manager and CSHCN Office Director continued to meet with the Intermountain Teen to Adult Healthcare Governance Committee each month, and were part of the Teen to Adult Healthcare Summit Planning Committee. The Third Annual Health Transition Summit was held in October 2021 in a hybrid live/virtual environment with several panel discussions from clinics that have implanted transition policies and procedures into their practices; family and parent perspective; and participant question and answer sessions. Once again, reviews indicated that these summits are needed, valuable, and should be ongoing.

 

Transition University through the Utah Parent Center (UPC) was able to continue their transition series virtually, then take it on the road to several rural communities where it was felt live interaction may be the best option. As with all things produced by UPC, Transition University is well received by parents, youth, and health and community providers. Planning sessions were underway with multiple partners to develop a four-session Transition to Adult Health Care Pediatric ECHO (Extension for Community Healthcare Outcomes) series that was set to begin in September 2022. IH hired a Teen to Adult Healthcare Transition Program Manager in May of 2022 to unify efforts across both pediatric specialty and primary care clinics in the IH system and to encourage more practices to adopt transition policies and procedures into their workflows. The ISP team also attended virtual transition/agency fairs through two school districts to offer care coordination and support for transition to adult health care activities.

 

Summary of successes and accomplishments on “Moving the Needle” in relation to NPM-12:

• The concept of transition to adulthood took on a unified front throughout the State with increased visibility across multiple sectors. (July 1st, 2021 - June 30th, 2022)
• The Transition Committee continued to meet monthly to plan, evaluate, and promote transition activities across the state in conjunction with our partners and stakeholders. (July 1st, 2021 - June 30th, 2022)
• Transition University, through the Utah Parent Center, provided both live and virtual courses for families and youth on all facets of adult living, including the transition to adult healthcare, with a focus on the youth with special health care needs population. (July 1st, 2021 - June 30th, 2022)

 

Challenges / Gaps / Disparities Report:

The concept of transition to adult healthcare is expanding across practices, albeit slowly. The clinics and organizations that tend to fare well and move more quickly along the policy to implementation trajectory are those who have a “champion” in the practice at a management or otherwise influential level, and multiple staff who are trained and can cross-cover for each other when a transition-aged patient is in the office. There are still practices where one or both of these is missing, and progress or even initiation is nonexistent. It is thought that institutional standardization may help, such as in the case of IH, with the implementation of a formal transition program manager and staff to support reluctant or reticent clinics.

Although we continue to meet, plan, evaluate, re-evaluate, and implement strategies across systems, it is still evident that one size does not fit all for tracking data on youth transition, whether that is public health; specialty care; pediatrics; behavioral health; or social services. Gathering data at any point in time is a challenge for everyone. As we continue to meet in committees and work groups, this continues to be a point of discussion to seek and replicate best practices. Initially, we anticipated we might create a statewide transition tracking system, however, we gave up that idea early on, as we realized that yet another database with the accompanying data entry would be cumbersome. Most organizations want a single point of data entry that allows multiple ways to pull data from a patient encounter, student Individualized Education Plan, training, or other youth development event.
 

Family care capacity continues to be a very real concern. COVID has affected not only children and youth and their accompanying mental health and lack of coping mechanisms and strategies, but also their parents and caregivers. The adults in our youths’ lives are often the products of adverse childhood experiences themselves; may lack financial stability; work multiple jobs and have limited time to spend with their child/youth; have a fundamental lack of knowledge of how educational, health, social, and other systems and infrastructure work and interrelate; and a general inability to take on “planning for the future”, when daily subsistence is tough. This limited capacity to support and guide their transitioning youth may mean that the only times the youth hears about or practices transition to adult healthcare is in the health or social service provider’s office. Overall, keeping families motivated on the transition journey can be a difficult ask from care coordination and transition support staff.
 

ISP faced two challenges in FY22: slow movement internally for approval of a data sharing agreement (DSA) between the UBDN and ISP to begin to contact youth of transition age in the UBDN database to offer support and guidance from the ISP transition specialist; and the loss of our full-time transition specialist due to job transfer out of state. The DSA process took much longer than anticipated. Ultimately, by the time we had a fully approved DSA, our full-time transition specialist moved out of state, ISP program revenue shifted to cover other expenses, and we brought on a 0.50 FTE transition specialist who is shared with another program in another role. With one-half the staff now available, outreach and capacity were greatly diminished.
 

We also found that one of our historical mainstays for reaching families about care coordination including transition to adult healthcare services was school district transition fairs, where families are able to attend and meet vocational, recreational, educational, healthcare, and social service organizations that support youth post-high school. Pre-COVID, these had been live events. In FY21, almost none were held. In FY22, several were held virtually. However, many organizations, ISP included, found that virtual events were poorly attended. Given the paucity of attendance, many potential beneficiaries of ISP support were missed.
 

It has been challenging at the Office of CSHCN, and particularly our work on transition to adult healthcare, to include youth voice. Our current challenge is to not create yet another youth board, but rather tap into an existing and well-functioning board and request their input, view, voice, and lived experience on our work. Some possibilities include the youth advisory board at the Utah Parent Center and existing youth boards through the Office of Substance Use and Mental Health at DHHS.

We are concerned about the end of the COVID-19 public health emergency on May 11, 2023, and the ramifications that may accompany it, as many previously qualified individuals will fall off of public assistance including Medicaid. We have worked with our existing families to encourage them to read all correspondence from Medicaid, comply with any requests, complete forms, and, if necessary, reach out to us for support in complying.

 

Disparities: Utah currently ranks 38th and 47th in the nation for CSHCN and non-CSHCN (respectively) adolescents who receive services necessary to make transitions to adult health care.

 

Agency Capacity / Family Partnerships / Collaboration:

Collaborative partners included the Utah Parent Center, Utah Family Voices, 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. ISP is actively partnering with several sister programs in the former Department of Human Services: Juvenile Justice and Youth Services; Division of Child and Family Services, including Child Protective Services; Wraparound Services that work to keep youth in home and out of state custody; Youth Empowered Solutions for Success; and the Office of Substance Use and Mental Health through their pediatric and youth service administrators.

 

The Utah Children’s Care Coordination Network and Medical Home Portal provide training and support for care coordinators and family partners from a variety of private provider offices and healthcare organizations in the state and include topics of transition to adult healthcare, motivational interviewing, and working with youth. ISP and the CSHCN Office participate with the Utah State Board of Education in their statewide transition work and serve on their advisory board and various sub-committees. The CSHCN Office also actively works with IH’s Teen to Adult Healthcare Governance Committee that meets monthly to promote transition and recruit and train healthcare providers in a standardized transition curriculum, and are involved in the planning and execution of the annual Teen to Adult Healthcare Summit.

 

Report of ESMs related to NPM-12

 

ESM 12.1: Percentage 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 adult health care.

 

Goal/Objective: Youth and adolescents with active transition plans will be more likely to complete the steps for successful transition to adult health care.

 

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.

 

ESM 12.1 Progress Summary: This was a new ESM from FY21. Robust partnerships have been fostered between the Utah Department of Health and Human Services and several community partners including two hospital systems to continually assess, develop, market, and implement a universal process, statewide, for transition to adult medicine; however, it has been difficult to reach consensus. For this reason, the program would like to deactivate this ESM, but will continue to work with stakeholders on developing a method for evaluating the success of transition plans for youth and young adults. Work will continue in FY24 to determine whether a "standard" survey instrument is the best way to measure, or if an "exit interview" developed by each clinic may be a better alternative, with each clinic reporting statistics on patient satisfaction and skill development once transition to the adult provider has occurred. This ESM will be reactivated once a data collection plan is developed and solidified.

 

 

ESM 12.2: Percent of adolescents and youth with special health care needs ages 12-18 who receive 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:

 

ESM 12.2 Progress Summary: Transition planning numbers for FY23 were based upon statistics provided by the Integrated Services Program (Utah Department of Health and Human Services) and the Utah Parent Center/Utah Family Voices.

 

 

ESM 12.3: Percent of providers trained in transition who created a transition policy for the 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.

 

ESM 12.3 Progress Summary: This was a new ESM for FY21. Robust partnerships have been fostered between DHHS 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 IH 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 17.1 - Percent of children with special health care needs (CSHCN), ages 0 through 17. (Track the percent of children and youth with special health care needs, autism spectrum disorder, and attention deficit disorder/attention deficit hyperactivity disorder)

 

Based on data collected by the Utah Registry of Autism and Developmental Disabilities URADD (Birth Years 2001-2018), 16.5% of children and youth 0-17 are Children and Youth with Special Health Care Needs.

 

NOM 17.2: Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system. (To ensure access to needed and continuous systems of care for children and youth with special health care needs)

 

The Department of Health and Human Services-Office of Early Childhood, the Department of Workforce Services-Office of Child Care, the Utah State Board of Education-Early Childhood Department, Early Childhood Utah and dozens of community-based programs such as: Help Me Grow Utah, Local Health Departments, Head Starts, Child Care Providers, Home Visitors, Early Interventionists, and Pediatric Providers are engaged in statewide efforts to facilitate early and routine developmental health screening. The tools for this project used are Brookes Publishing ASQ-3 and ASQ Social-Emotional. Children that need further assessment and/or services are connected to additional resources. When developmental delays are discovered and treated early, children have increased opportunities to arrive at school healthy and ready to learn.

 

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 do not need which saves parents time.

 

During the past grant year, the CHARM program increased by 12.2% from the previous year, the number of web portal users that have access to immunization histories, newborn hearing, and CCHD results. As stated in NOM 13, the CHARM Program integrates with the Early Hearing Detection and Intervention (EHDI) and Baby Watch/Early Intervention (BW/EI) 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 children, parents, and providers. In addition, CHARM provides immunization information and hearing screening results to the Baby Watch/Early Intervention (BW/EI) 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 BW/EI 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 BW/EI information continued to help the EHDI program follow-up on children they have referred to BW/EI 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

 

In order to help plan resources, and determine diagnostic trends statewide ASD estimates based on a community medical diagnosis of ASD and/or an autism special education eligibility (2018) are obtained through the work of URADD.

Age  Prevalence

3 0.8%

4 1.3%

5 1.5%

6 2.0%

7 1.9%

8 2.2%

9 2.0%

10 2.3%

11 2.4%

12 2.8%

13 2.8%

14 3.2%

15 2.0%

16 3.0%

17 2.0%

18 1.4%

 

In response to the lack of early identification of ASD, in 2022, CSHCN contracted with Help Me Grow Utah (HMG-UT) to screen children using the Modified Checklist for Autism in Toddlers-Revised (M-CHAT R/F) and make referrals as appropriate. HMG-UT screened 176 children for autism spectrum disorder and referred 233 children to appropriate services. The M-CHAT R/F is designed for children 16 to 30 months of age. If an M-CHAT R/F is properly administered, these children can get appropriate Part-C and Part-B services. If this screener leads to appropriate testing and diagnosis, these children can enter school with an appropriate classification (General Education, 503 or Special Education).

 

During the past grant year, the CHARM Program partnered with stakeholders from the Utah Governor’s Early Childhood Utah Commission and its Health Subcommittee on a project to make Ages and Stages Questionnaire (ASQ-3) and ASQ Social and Emotional-2 (ASQ SE-2) developmental screening results available to early care, development, health care, and education providers, as well as clinicians. This will help ensure that more effective and consistent referrals, services, treatments and interventions are provided to children with potential developmental delays. CHARM collaborated with the Utah Department of Workforce Services – Office of Childcare, Help Me Grow Utah, and the Utah Head Start Association which will all use the same ASQ developmental screening tool across their programs and share the results of those screenings through CHARM’s integration system with users of: 1) the Utah Statewide Immunization Information System (USIIS), 2) the CHARM Web Portal, 3) the Baby Watch Early Intervention’s BTOTS database, and 4) Electronic Medical Record (EMR) systems, including Intermountain’s and a Community Health Center’s system. A parent consent form was developed for those agencies utilizing the ASQ screening tool and collecting developmental screening results. A parent/guardian must sign the consent form before their child’s ASQ screening results are shared. In addition, Data Sharing Agreements began to be established between the agencies collecting and sharing the data with CHARM and the programs/organizations receiving the data in their systems.

 

This project further expands and integrates the CHARM system with appropriate state and community databases so that better and more consistent services are provided to children and youth with special health care needs and their families. Using the same ASQ developmental screening tools will allow early care and education providers, clinicians and health providers to align efforts by sharing screening results across systems to prevent children from falling through the cracks.