CYSHCN Domain

 

Medical Home for CYSHCN Report (October 2021 – September 2022)

 

National Performance Measure 11:

Percent of children with special health care needs (CYSHCN) having a medical home.

Strategy 11.

OCCYSHN will improve access to family-centered, team-based, cross-systems care coordination for CYSHCN and their families through workforce development and financing activities.

 

Activity 11.1. Quality Improvement Collaboratives for CYSHCN (QuICC)

 

OCCYSHN’s goal is to strengthen cross-systems care coordination. Building off of lessons learned from past projects, OCCYSHN designed a concept called Quality Improvement Collaboratives for CYSHCN (QuICCs – see graphic above). QuICCs provide a framework for addressing systems improvement. The framework is flexible, to accommodate differences in local priorities and capacity. It allows for innovation and potential collaboration with Family Connects Oregon Systems Alignment Teams. 

Accomplishments:

• Conducted two virtual listening sessions with groups of CaCoon staff to learn about barriers and challenges to implementing the CaCoon program (NPM Activity 11.4).
• OCCYSHN’s Care Coordination Specialist met with CaCoon supervisors individually to hear about and learn from their local program experiences.

 

Challenges/Emerging Issues:

• Local Public Health Authorities faced recruitment and retention challenges, making it hard to implement systems-level work.
• OCCYSHN planned to align QUICC efforts with the new universally-offered home visiting, Family Connects Oregon (FCO) Systems Alignment Teams (SAT). FCO efforts remained in a preliminary phase during this reporting period, so OCCYSHN put the QUICCs work on hold to await development of the SATs.
• Local FCO SATs were slow to develop, given the challenges associated with the pandemic.

 

Activity 11.2. Piloting “Activate Care” for Care Coordination Teams (PACCT)

The Piloting Activate Care for Care Coordination Teams (PACCT) project began in 2019 with five local public health authority (LPHA) community-based shared care planning teams. By 2022 there were nine PACCT teams operating. Teams piloted a cloud-based care coordination platform called Activate Care, which was designed to collaboratively create, share, manage and track shared care plans. Professionals and family members used the platform to partner in the shared care planning process.

Accomplishments:

• Initiated and completed an RFP process to establish new PACCT teams.
• Increased the statewide number of PACCT teams to nine.
• Supported PACCT teams in a diverse selection of urban, rural, and frontier communities.
• Supported some teams using Activate Care for virtual care coordination during the pandemic.
• Provided PACCT technical support, including interactive monthly group video calls, one-on-one virtual orientations, and virtual training sessions with team members and their selected community partners.
• Provided teams with accessible, inclusive resources for families and communities, employing health literacy best practices.

Challenges/Emerging Issues:

• The pandemic severely strained LPHA resources, impeding the implementation of PACCT. Consequently, OCCYSHN did not require LPHAs to develop standing care coordination teams, initiate quality improvement interventions, or bring prepared case scenarios to learning community meetings.
• LPHAs had difficulty engaging community partners in care coordination because the pandemic strained the workforce and other resources.
• The pandemic exacerbated inequities in family access to the technology and bandwidth required to use Activate Care.
• The Activate Care platform remains limited to English only, creating a significant barrier for non-English speaking clients and families. 

 

Activity 11.3. Shared Care Planning

OCCYSHN prioritizes cross-systems care coordination in our work, and shared care planning (SCP) is a core component of those efforts. LPHAs have integrated shared care planning into CaCoon since 2017. CaCoon is OCCYSHN’s statewide public health nurse home visiting program (NPM Activity 11.4). CaCoon nurses identify individual CYSHCN who would benefit from shared care planning and convene that CYSHCN’s family members and the professionals who serve them. Together they develop a family-centered shared care plan. The shared care plan includes participation from primary care provider, other health, education and community service providers.

Accomplishments:

• The pandemic necessitated innovative approaches to SCP. For example, some LPHAs conducted virtual SCP, as opposed to meeting in person.
• Following a sharp drop in numbers of SCP meetings during the first year of the pandemic, some in-person meetings resumed. After 2020, the number of new shared care plans increased, as did the number of re-assessments. (See SCP data below.)

OCCYSHN did the following to support and promote shared care planning:

• Promoted innovative approaches to SCP in response to pandemic exigencies.
• Supported the professional development of LPHA community health workers (CHWs).
  • Paid for LPHA community health workers (CHWs) to take OCCYSHN’s online course, “Supporting Families—Navigating Care and Services for Children and Youth with Special Health Needs.”
  • Hosted a virtual “community of practice” for CHWs who took the course, to allow CHWs to share learning and discuss applying their new knowledge.
• Began developing a quality improvement tool to support SCP, called the Family-Centered Share Care Planning Assessment (FCSCPA).
• Provided additional training on SCP to Tillamook, Coos and Clatsop LPHAs.
• Created and disseminated a training video for home visitors called “Health Care Transition in Shared Care Planning,” and provided TA on that topic as requested.

Challenges/Emerging Issues:

• SCP meetings were hard to convene due to the pandemic.
• Momentum for SCP was lost with some community partners, and it was difficult to regain.
• Some families lacked the equipment or sufficient internet access to participate in virtual meetings.
• The number of shared care plans initiated and re-evaluated during the reporting period did not return to pre-pandemic levels.

Activity 11.4. Care Coordination (CaCoon) Public Health Nurse Home Visiting

CaCoon (short for Care Coordination) is OCCYSHN’s public health nurse home visiting program. CaCoon program goals are to provide accurate information to families, ensure children and youth with special health care needs (CYSHCN) and their families can access care and services as close to home as possible, promote effective and efficient use of the health care and service systems, and promote the well-being of CYSHCN and their families. CaCoon home visitors (Registered Nurses and Community Health Workers) help families coordinate care for CYSHCN statewide. They also convene shared care planning meetings for select CYSHCN (NPM Activity 11.3).

 

Accomplishments:

• OCCYSHN contracted with 27 local public health authorities (LPHAs) to implement CaCoon in 28 of Oregon’s 36 counties
• Served 741 CYSHCN through 3,702 visits.
• Adapted to the pandemic by providing home visits by phone or online.
• Made in-person visits as needed.
• Of CYSHCN served, 86% were insured through Medicaid, and 15% were transition-aged youth ≥ 12 years.
• Served CYSHCN with developmental delay, autism, prematurity, heart disease, genetic disorders, oral-motor dysfunction requiring specialized feeding, chromosome disorders, seizure disorders, hearing loss, and more.
• Expanded the target population of the CaCoon program, to include case management services for parents and caregivers of CYSHCN, because CYSHCN benefit when their parents’ and caregivers’ needs are met.
  • Served fifteen parents/caregivers of CYSHCN in five counties.
• OCCYSHN and OHA MCH partnered to:
  • Design a new home visiting program data collection system, THEO, and start a rolling launch in February 2022. The purpose of the improved data collection is to support home visiting program quality, clarify outcomes, and to identify gaps and barriers to care and services.
  • Develop and implement a combined orientation checklist for new staff at LPHAs providing CaCoon and Babies First! home visiting services. The orientation includes training on a wide variety of topics pertinent to serving CYSHCN, and to understanding factors that can affect their families.
  • Conduct monthly virtual Community of Practice meetings for home visitors across the state. Topics included: sexual orientation and gender identity; supporting parents with intellectual and developmental disabilities, supporting clients with ADD, and emergency preparedness for CYSHCN.
• Provided professional development and technical support to the CaCoon workforce, including training CaCoon home visitors on Targeted Case Management (TCM) billing. TCM billing supports LPHA funding, thereby increasing their capacity to serve CYSHCN.
• Conducted listening sessions with LPHAs implementing CaCoon, to learn about local assets for and barriers to implementing the program.

Challenges/Emerging Issues:

• The pandemic exacerbated workforce retention and recruitment challenges for LPHAs. The number of local agencies contracting with OCCYSHN to execute the CaCoon program decreased. Of LPHAs that did contract to implement CaCoon, several had insufficient staff to execute the program.
• The launch of the new Family Connects Oregon universally offered home visiting program in eight Oregon communities diverted limited public health workforce and resources away from the CaCoon program.

 

Activity 11.5. Leverage the Oregon Family-to-Family Health Information Center (ORF2FHIC)

OCCYSHN’s Family Involvement Program (FIP) houses and supports the Oregon Family to Family Health Information Center (ORF2FHIC). The FIP offers support and information to family members of Oregon CYSHCN and brings the wisdom and experiences of those families to OCCYSHN’s systems improvement efforts. ORF2FHIC operates with a team of five part-time staff (all parents of CYSHCN), for a total of 1.50 FTE.

 

Accomplishments:

• Filled a long-vacant Bilingual Outreach/Parent Partner position
• Offered 23 virtual trainings and small-group sessions (Table Talks) in English and Spanish for family members of CYSHCN, youth with special health care needs, and professionals. These events were attended by a total of 358 people. Topics included:
  • Health Care Transition
  • One-Page Profiles for the Medical Setting
  • Health Care Advocacy
  • Planning for Health Emergencies
  • Introduction to F2F/Resources
• Provided one to one support to 239 family members via ORF2FHIC’s phone lines, email, or on the web.
• Instituted a HIPAA-compliant system for professionals to refer families to ORF2FHIC. Responded to 17 pairs of families and professionals who used the new referral system.
• Maintained Spanish and English Facebook pages for families of Oregon CYSHCN.
• Disseminated periodic newsletters and program announcements via the ORF2FHIC listserv of more than 125 Oregon family organizations, CYSHCN-serving organizations, and culturally-specific community organizations.
• Maintained a comprehensive website of state and national CYSHCN resources.
• Recruited and supported ten family members of CYSHCN to participate on the HERO Kids Registry advisory committee and workgroups (NPM Activity 11.10).
• Trained 211info call center staff on resources and support paths for CYSHCN, resulting in more than 100 referrals to ORF2FHIC. 211info is Oregon’s statewide hotline for social services referrals. 
• Initiated “meet and greets” with four culturally-specific, community-based organizations: Consejo Hispano, Latino Network, Salem for Refugees, and Asian Pacific American Network of Oregon (SPM Activity 2.1.3).
• Initiated “meet and greets” with new family organizations including the Northwest PANDA/PANS Network, and Advocates for Disability Supports.
• Supported OHSU’s Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program with resources and training on family-centered care for faculty and students.
• In collaboration with six other F2F’s, supported the work of the Western States Regional Genetics Network. Consulted on family perspective, reviewed materials, and advised on the Genetic Resources, Education and Advocacy Tool (GREAT) website.
• Participated in key family-centered statewide collaboratives:
  • Children’s Services Advisory Group (Oregon Developmental Disabilities Program)
  • Children’s Services Advisory Council (Oregon Child and Family Behavioral Health Program)
  • Statewide Family Training and Outreach Collaborative
  • Oregon Family Workforce Association

 

Challenges:

• Families of CYSHCN are especially busy. This can make it difficult to generate attendance at trainings and Table Talks.
• The Family Involvement Program did not have staff capacity to conduct a planned six-hour advanced family leadership activity, or to continue a project aimed at having families inform OCCYSHN’s block grant planning.

 

Activity 11.6. Equity  
Accomplishments:

The impacts of structural racism and other forms of discrimination directly inform and drive all of OCCYSHN’s medical home efforts. CYSHCN from minoritized populations face particular barriers to accessing high quality health care and services, and equity and inclusion are key priorities for OCCYSHN. In our efforts to promote culturally appropriate medical homes, we remain accountable to BIPOC communities and to other underserved populations, including LGBTQIA+ people, and people with disabilities. To advance internal and external competence on health equity, we embraced cultural humility and sought guidance from diverse stakeholders. We shared learning with our statewide partners through training, dissemination products, and communities of practice. Specific equity-related accomplishments are included in individual NPM 11 activity sections. Examples include:

• Held CaCoon Community of Practice meetings on equity-related topics (NPM Activity 11.4).
• Launched an online community health worker training to promote culturally appropriate care coordination (NPM Activity 11.3).
• Conducted qualitative needs assessments with specific cultural communities and groups (NPM Activity 11.8).
• Provided Spanish-language support for families of CYSHCN (NPM Activity 11.5).
• Translated HERO Kids Registry information into Spanish (NPM Activity 11.10).

 

Activity 11.7. Systems & Policy  

OCCYSHN identifies systems issues impacting CYSHCN and their families. We inform policy agendas of the Oregon Health Authority, community-based organizations, and advocacy groups. We also advise and inform the Oregon Legislature, Oregon Health & Science University, Oregon Law Center, Oregon Pediatric Society, Oregon Medical Association, and Coordinated Care Organizations.

 

Accomplishments:

• Informed OHA about systems and policy issues relevant to CYSHCN in OCCYSHN/OHA MOU meetings
• Served as key child health advisors for Oregon’s 1115 waiver application to the Centers for Medicare and Medicaid Services (CMS)
  • Championed the re-institution of EPSDT in Oregon, abandoning a decades old EPSDT Waiver.
  • Helped identify the population of youth with special health care needs (YSCHN) to benefit from the waiver
  • Identified health-related services and health-related social needs that benefit YSCHN served through the waiver
• OCCYSHN’s Director served in leadership roles that impacted the health of children in general, and CYSHCN specifically, including:
  • Universally Offered Newborn Home Visiting Program – State Medical Director
  • Oregon Health Evidence Review Commission
  • Oregon Patient Centered Primary Care Home Advisory Committee
  • Oregon Commission on Developmental Disabilities
  • Oregon Individualized Service Plan Redesign Team
• Participated on the Oregon State Inclusive Preschool Leadership workgroup.
• Concluded collaboration with OHA and Oregon Pediatric Improvement Partnership on the CMS-funded InCK project, which was discontinued (NPM Activity 12.5).
• Concluded work on the Health Share CCO All:Ready Kindergarten Readiness Network as the work moved to a new organization. Discussed opportunities for future participation.
• Participated as one of ten state teams convened by Got Transition, a program of The National Alliance to Advance Adolescent Health, to strategize about including health care goals in special education programs.
• Launched an online course on Oregon State University’s community health worker (CHW) training site titled “Supporting Families: Navigating Care and Services for Children and Youth with Special Health Needs.” (NPM Activity 11.6)
• Conducted an evaluation of the CHW course, which demonstrated its usefulness to care coordinators, case managers, parent partners, and family navigators.
• Hired a Systems Innovation Project Manager to develop cross-systems care coordination pilots, and to strengthen the network of CHWs serving CYSHCN. 

 

Challenges:

• CHWs work in a variety of ways in different Oregon systems. There is no standardized understanding of their roles and responsibilities. The lack of consistency makes it difficult to support CHW workforce development.
• Ensuring access to the CHW course is challenging. It is not culturally accessible and/or affordable to all potential learners, and its relevance to their roles may not always be recognized.

 

Activity 11.8. Assessment & Evaluation  

 

Accomplishments:
OCCYSHN’s Assessment and Evaluation unit:

• Evaluated our cross-systems care coordination (NPM Activities 11.1-11.4) and family involvement programs (Activity 11.5). Evaluation results are included in those sections.
• Began critical examination of our data collection instruments with a cultural sensitivity/appropriate lens.
• Continued to collaborate with OHA MCH on the development and implementation of the THEO home visiting database as it pertains to the CaCoon program (NPM Activity 11.4).
• Began developing an analysis plan for NSCH data in preparation for Oregon’s NSCH data that includes our state oversample (SPM Activity 2.1.6).
• Developed an “email blast” briefly summarizing care coordination findings using NSCH data and disseminated to LPHAs (Attachment 1).
• Completed briefs describing challenges accessing allied therapies; financial hardship experienced by CYSHCN and their families; unmet expectations of the healthcare system for Swahili-speaking families; and an overview of Oregon’s CYSHCN population (Attachment 2).
• Consulted with a community-based organization that serves Asian and Pacific Islander (API) communities to develop the focus and structure for our third participatory needs assessment study, which will focus on CYSHCN and their families in the API community. This collaboration will inform our subsequent Request for Proposal. (SPM Activity 2.1.6.)
• Continued work on manuscripts intended for journal publication that describe our participatory needs assessment approach and findings.
• Prepared a manuscript intended for journal publication that describes the results of our analysis of Oregon’s patient-centered primary care home (PCPCH) program for children with medical complexity (Summarized in Attachment 2).
• Monitored funding opportunities to extend PCPCH analysis using updated data and including PCPCH programmatic data.

Challenges:

• There are limited data describing Oregon CYSHCN, particularly those from minoritized communities.
• There are no data available describing Oregon CYSHCN geographically (e.g. by county or region), which impedes our ability to assess unique challenges faced by CYSHCN living in rural areas.

 

Activity 11.9. Communications  

Accomplishments:

OCCYSHN developed products and dissemination strategies to advance our Medical Home efforts. We promoted health equity by using current health literacy best practices to communicate with families of CYSHCN, and with community partners. We disseminated research, analysis, program, and policy information to professional audiences at local, state, and national levels. Specifics communication efforts are detailed in the individual NPM 11 activity reports. Examples include:

• Developed and launched a Community Health Worker (CHW) training curriculum, to train CHWs about supporting CYSHCN and their families (NPM Activity 11.7).
• Maintained a comprehensive OCCYSHN website and used social media and email to share information.
• Used trainings, presentations, communities of practice, and learning collaboratives to inform our partners, and to learn from them.

 

Activity 11.10 Emergency Medical Systems for Children (EMSC) Registry for CYSHCN  

Health Emergency Ready Oregon (HERO) Kids Registry is a voluntary, no-cost, secure registry that lets families record critical details about their child's health. First responders and hospital emergency departments can quickly and easily access that information in an emergency. For emergency health care providers faced with split-second decisions, HERO Kids Registry can fill the pre-hospital information gap.

Accomplishments:

• Awarded HRSA Emerging Issues Grant (August 2021-September 2022).
• Convened four workgroups: Emergency Medical Services (EMS); Emergency Department (ED); family members of CYSCHN; and community stakeholders. Co-created educational materials over six months.
• Published an online library of educational materials including: four targeted FAQs, two program rack cards, four targeted presentations, a registration guide for families and young adults, and an EMS quick reference guide.
• Developed and translated materials for Spanish-speaking families and young adults.
• Secured an MOU with OHSU Department of Emergency Medicine to manage business office operations.
• Successfully connected HERO Kids Registry to the Oregon Emergency Department Information Exchange, allowing ED staff faster access to information.
• Conducted 17 educational presentations to EMS, EDs, families, and other stakeholders.
• Launched HERO Kids registry and began accepting registrations September 2022.

Challenges:

• EMS and ED staff had limited bandwidth to participate in trainings due to COVID impacts on the workforce.

 

Health Care Transition for CYSHCN: Report (October 2021 – September 2022)

 

National Performance Measure 12:

Percent of adolescents with special health care needs who received services necessary to make transitions to adult health care.
 

Activity 12.1. Workforce Development   

OCCYSHN increased the capacity of the workforce serving youth with special health care needs (YSCHN) to address health care transition (HCT).

Accomplishments:

• Integrated HCT into all of OCCYSHN’s cross-systems care coordination efforts, including PACCT, CaCoon, and shared care planning (NPMs 11.2 - 11.4).
• OCCYSHN’s Director participated in a newly-formed workgroup focused on integrating health into educational settings, with representatives from OHA, ODE and OCCYSHN.
• Supported an innovative project focused on HCT in Lane County. The project specifically involved a community assessment aimed at identifying community resources for youth with special health care needs, strengthening relationships with service providers, addressing service gaps, prioritizing vulnerable youth, and developing outreach strategies.
• Developed and posted a video addressing HCT and shared care planning, for LPHAs and other service providers
• Launched an online community health worker (CHW) course that included HCT topics (NPM Activity 11.6).
• Provided HCT technical assistance and resources to a children’s clinic that requested it.
• Hired a Systems Innovation Manager to support development of the CHW workforce serving CYSHCN, including YSHCN who are transitioning to adult living (NPM Activity 11.7).
• Participated on a national workgroup of Title V programs, National Technical Assistance Center on Transition: The Collaborative (NTACT: C) and Got Transition to improve the integration of health and HCT in education (NPM Activity 11.7).
• Hosted virtual regional meetings for LPHAs. Shared information and conducted listening sessions with LPHAs about their needs related to supporting effective HCT (NPM Activity 11.3).
• Presented on HCT to health care providers and Coordinated Care Organization (CCO) care coordinators and staff (NPM Activity 12.2).

Challenges:

• LPHAs need continued training on supporting YSCHN in HCT, and on integrating HCT into their care coordination efforts
• Due to pandemic-related workforce challenges, OCCYSHN had fewer opportunities to address HCT with LPHAs, and to train their newer staff about HCT. We were not able to resume the virtual ECHO sessions (case study presentations and discussion) which focused on HCT (NPM Activity 11.4).

Activity 12.2. Continuation of Oregon’s CMC CoIIN Project

Led by Drs. Alison Martin and Reem Hasan, OCCYSHN’s MCHB Collaborative Improvement and Innovation Network (CoIIN) project focused on improving health care transition (HCT) for adolescents and young adults with medical complexity (AYAMC). We completed our fifth year CoIIN activities, which focused on dissemination, evaluation, and sustainability/spread. Additionally, we continued clinical quality improvement activities using Title V CYSHCN funding.

Accomplishments:

• Dr. Martin and OCCYSHN’s Systems and Workforce Development Manager, Marilyn Berardinelli, gave input on the following to OHA Health Policy Division on its 1115 Medicaid waiver specific to HCT: (1) how to identify YSCHN, including AYAMC, (2) supporting health care transition services, and (3) a package of services to address social determinants of health and “health service related needs.”
• OCCYSHN’s Family Involvement Program Manager, Tamara Bakewell, successfully advocated for HCT for CYSHCN to be included in the Medicaid Advisory Committee’s report to the Oregon Health Policy Board, which oversees OHA. This ultimately contributed to HCT for youth with special health care needs being included in Oregon’s 1115 Medicaid Waiver (NPM Activity 12.5).
• Mrs. BranDee Trejo and Mrs. Ana Valdez, Family Leaders (FL), collaborated with Family Voices to record a video describing the ways that OCCYSHN’s project engaged FLs. Mrs. Trejo’s son edited the video.
• The Oregon Family to Family Health Information Center (ORF2FHIC) worked with the project’s FLs, an OHSU Department of Pediatrics DNP, and Dr. Hasan to develop a video for families about HCT. We posted the video on both ORF2FHIC and OHSU websites.
• Developed and gave presentations about HCT to educate pediatric primary care providers, and family medicine residents. We started adapting the presentation for pediatric primary care nurses. We also made a presentation to Coordinated Care Organizations (CCO) care coordinators and other staff, which included recommendations for how they can better support members and providers to implement effective HCT.
• Implemented a QI project focused on transferring YAMC from pediatric to adult primary care pilot.
• Worked with Boston University and other state CoIIN team members to prepare and present at the 2022 AMCHP conference.
• Adapted a transition readiness assessment (TRA) for use with all youth, including AYAMC and their caregivers. OHSU Department of Pediatrics adopted the TRA for department-wide use.
• Met with the Oregon Department of Human Services, Child Welfare District 2 to discuss supporting HCT for CYSHCN in foster care.

• Monitored the OHA-supported CCO Metrics and Scoring Committee to begin planning for a transition-focused CCO metric.

• Started work on a manuscript for journal publication that describes our clinical QI project.
• Started developing a subproject focused on identifying culturally sensitive health care practices applied to HCT (SPM Activity 2.1.2).

Challenges:

• COVID response limited the bandwidth of health care providers, staff, and systems to attend to HCT.
   

Activity 12.3. Leverage Family-to-Family Health Information Center Grant  

The Oregon Family to Family Health Information Center (ORF2FHIC) educated youth with special health care needs and their families about the transition from pediatric to adult health care. 

 

Accomplishments:

• Offered the popular training Moving from Pediatric to Adult Health Care: an Introduction for Families six times, in collaboration with other family organizations.
• Co-hosted a training focused on the transfer of health care responsibilities at age 18, with a firm that specializes in financial planning for families of people with special health needs. 45 parents attended.
• Developed and piloted a training entitled Integrating Health Transition into the IEP with partners at Oregon’s Parent Training and Information Center.
• Produced a five-minute animated video entitled Moving to Adult health Care at Age 18:  What to Ask Your Provider. Disseminated it to family groups around the state and posted on the ORF2FHIC’s website. 
• Produced a one-page tip sheet for youth and families entitled Five Questions to ask your Provider, to help them get specific and practical information about the transfer of care to new providers. 
• Consulted with The Arc of Oregon on revising their Supported Decision Making curriculum
• Established ORF2FHIC’s first Youth Advisory Committee. Recruited five youth (aged 13–17) to advise on the Moving from Pediatric to Adult Health Care (for Youth) curriculum. Met with them twice to review and revise.
• Supported one youth (the sibling of a person with disabilities) to co-present the youth curriculum. 
• Elevated health care transition and health care transfer topics to Oregon Health Authority by sitting on the Advancing Consumer Experience subcommittee.

 

Challenges

• We were not able implement plans for a second animated video for youth due to limited capacity.
• Engaging youth to participate in our work required innovation, ways to incentivize them, flexibility around school schedules, and new administrative processes, including obtaining consent from their families.

 

Activity 12.4. Equity  

Accomplishments:
The fact that racism and other forms of discrimination affect the health of Oregon YSHCN informed and drove all OCCYSHN’s health care transition (HCT) efforts. YSHCN from minortized populations face particular barriers to health care access, equity, and inclusion. Our efforts addressed the needs of youth from BIPOC and other underserved populations, including LGBTQIA+ people and people with disabilities. Specific equity-related HCT activities are described in the individual NPM 12 activity report sections. Examples include:

• Made internal and external efforts to promote health equity.
• Embraced cultural humility and sought guidance from diverse stakeholders.
• Shared learning with our partners through training, dissemination products, and communities of practice.
• Administered an annual distribution of philanthropic funds from the Oregon Community Foundation (Sidney and Lillian Zetosch Funds), to support the education of Oregon CYSHCN from low-income families. Secured educational equipment for 112 school-aged CYSHCN, many of whom were transition-aged youth from underserved rural and/or minoritized communities.

Activity 12.5. Systems and Policy

Accomplishments:

• Provided input into the 1115 Medicaid Waiver, directly impacting some YSHCN up to age 26 transitioning to adult living. Input included helping to define the population to receive benefits, and a package of health-related services and health-related social needs. The waiver was approved for implementation with this population beginning January 2024.
• Advocated for eliminating a decades old Medicaid waiver of Early Periodic Screening and Treatment (EPSDT) in Oregon.
• Informed implementation of the 1115 Medicaid Waiver, including EPSDT, which applies to certain YSHCN transitioning to adult living.
• Continued to participate in the OHA (Integrated Care for Kids (InCK) community engagement meetings and informed project development through December 2022 when the project ended. During this period, OCCYSHN advocated for addressing HCT as part of the project.
• Worked with the National Alliance to Advance Adolescent Health/Got Transition on development of a HCT practice and payment technical assistance document for primary care clinics participating in InCK.

Challenges:

• Provided input to OHA on the second iteration of the CCO reporting tool, which does not adequately reflect children. That input was not incorporated into the update.
   

Activity 12.6. Assessment and Evaluation

Accomplishments:
Needs assessment activities and challenges related to medical home (NPM Activity 11.8) include health care transition (HCT). In addition, OCCYSHN:

• Continued evaluating cross-systems care coordination programs (NPM Activity 12.1) and family involvement programs (NPM Activity 12.3), both of which incorporate HCT. Evaluation results are included in those sections.
• Provided evaluation consultation to two specialty-care HCT pilot projects in OHSU Department of Pediatrics. One project focuses on creating a “warm hand-off” for youth in the hematology and oncology clinic transferring between pediatric and adult providers. The other focuses on early implementation of a HCT transition toolkit that is integrated into youths’ electronic medical records in five specialty clinics.

Challenges:

• Limited data are available describing Oregon CYSHCN. (See Challenges for NPM Activity 11.8.)

Activity 12.7. Communications  

Accomplishments:

OCCYSHN developed products and strategies to advance and improve Health Care Transition (HCT) for youth with special health care needs (YSHCN). We applied an equity lens to all communications. We used current health literacy best practices to communicate with YSHCN and their families, and we promoted those practices with our partners. We disseminated research, analysis, program, and policy information on HCT to professional audiences at local, state, and national levels. Specific communication efforts are detailed in the individual NPM 12 activity reports. Examples include:

 

• CMC CoIIN Project informed and engaged providers about HCT for medically complex young adults (NPM Activity 12.2).
• Developed products and held trainings aimed at HCT for YSHCN through the Family Involvement Program (NPM Activity 12.3).
• Maintained comprehensive OCCYSHN website and used social media and email to share information with stakeholders.