CYSHCN Domain

 

Medical Home for CYSHCN Report

 

National Performance Measure 11:

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

Report on Strategies and Activities October 2020– Sept 2021.

 

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)

The Regional Approach to Child Health (REACH) pilot project supported regional teams to identify gaps and barriers in health and service systems for children and youth with special health care needs (CYSHCN), and to address those issues through quality improvement (QI) processes. Though the pilot ended in 2018, the Oregon Center for Children and Youth with Special Health Care Needs (OCCYSHN) continued to leverage lessons learned from REACH to promote cross-systems care coordination. Cross-systems care coordination teams in Central and Southern Oregon benefitted from systems and policy changes implemented through REACH. These changes were sustained without financial support from OCCYSHN.

Ultimately, lessons learned from the REACH project will inform development of Quality Improvement Collaboratives for CYSHCN (QuICC). OCCYSHN will coordinate with Family Connects Systems Alignment on this work, because both efforts share the same local public health authority (LPHA) workforce. QuICCs will support LPHAs to use cross-sector team-building and shared care planning as foundations for integrating QI principles into their work. (See Activity 11.1 of the Block Grant Plan.)  Opportunities to advance this work were impeded by the COVID-19 pandemic, which slowed the rollout of Family Connects.

 

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 LPHA shared care planning teams and doubled this report year with the addition of five new teams. The ten teams represent a diverse selection of urban, rural, and frontier communities. PACCT participants were selected through an RFP process. They agreed to pilot a cloud-based care coordination platform called Activate Care for shared care planning, and to participate in monthly video calls with OCCYSHN and their LPHA peers. In Activate Care, care plans are created, shared, managed, and tracked collaboratively by professionals and family members.

Because the pandemic severely strained LPHA resources, OCCYSHN did not require LPHAs to develop standing care coordination teams, initiate quality improvement interventions within their teams, or bring prepared case scenarios to learning community meetings. Instead, the pilot pivoted to using Activate Care as a response to the inability to do home visits. The intent was to test the viability of remote care coordination for CYSHCN. OCCYSHN learned that it was difficult for LPHAs to engage community partners due to the pandemic. We also learned that the pandemic exacerbated inequities in family access to the technology and bandwidth needed to use Activate Care.

 

OCCYSHN continued developing technical support products for PACCT participants. We provided them with accessible, inclusive resources for families and communities, employing health literacy best practices. Technical assistance also included interactive monthly group video calls, one-on-one virtual orientations, and virtual training sessions with LPHA teams and their selected partners.

 

Activity 11.3. Shared Care Planning

OCCYSHN contracted with 26 LPHAs serving 29 of Oregon’s 36 counties to provide CYSHCN with shared care planning and public health nurse home visiting services (Activity 11.4). We allowed flexibility on LPHA scopes of work based on community needs, capacity, and pandemic exigencies.

 

We offered and supported the use of Activate Care as a platform for remote shared care planning. The pandemic impeded LPHA progress with remote shared care planning (Activity 11.2).

 

OCCYSHN discontinued shared care planning ECHO sessions due to pandemic-related constraints on the workforce. ECHO is an evidence-based framework of online learning communities where topical information is coupled with peer support, guidance, and feedback. Instead we worked with OHA to conduct monthly communities of practice (COPs) to respond to workforce needs related to the pandemic. We determined that the joint COPs were an effective workforce development method that we will continue. We paused formal professional development on shared care planning, although we continued providing technical assistance on an ad hoc basis.

 

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 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. Across the state, CaCoon home visitors (Registered Nurses and community health workers) help families coordinate care for CYSHCN. They also convene shared care planning teams for CYSHCN and their families as needed.

 

Due to the pandemic, most 2021 CaCoon visits were virtual or by phone, with some in-person visits based on client need. Overall, CaCoon served 752 CYSHCN through 3,941 home visits. Of those served, 79% were insured through Medicaid, and 14% were transition-aged youth ≥ 12 years. Home visitors supported CYSHCN with conditions that included developmental delay, autism, prematurity, heart disease, genetic and chromosomal disorders, feeding disorders, seizure disorders, and hearing loss.

 

OCCYSHN provided professional development and technical support to the CaCoon workforce, and trained CaCoon home visitors on Targeted Case Management (TCM) billing, which supports LPHA funding and capacity to serve CYSHCN.

 

To help address social determinants of health, OCCYSHN provided LPHAs with state and federal resources on technology and bandwidth to share with families of CYSHCN. We also provided them with information about the Expanded Child Tax Credit. OHA/OCCYSHN communities of practice offered opportunities for home visiting program staff to share knowledge and ideas about how to support families and address inequities.

 

OCCYSHN and OHA MCH partnered to develop new home visiting program data collection instruments that will launch in Fall 2022. The purpose of the improved surveys is to support home visiting program quality, clarify outcomes, and identify gaps and barriers to care and services. A data equity workgroup was formed that included a home visiting client, home visitors serving black parents, home visitors from rural areas, a representative from the Native American Youth Association, nurses from the Black Nurses Association, a representative from the Latino Community Organization, and professionals with experience in informatics, research analyses, and evaluation. Data equity consultants from the Coalition of Communities of Color were hired to provide recommendations. The workgroup and consultants developed more robust, anti-racist data collection surveys. The resulting data will “tell the story” of home visiting in Oregon in ways that are strength-based, and that more accurately reflect the social determinants of health.

 

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 families of CYSHCN, and brings the wisdom of the family experience to CYSHCN-serving care and services.

 

In this reporting period, ORF2FHIC offered six different virtual trainings for families and professionals about various aspects of caring for CYSHCN. We conducted 19 trainings and six listening sessions with family members of CYSHCN. Attendance was lower than in years past, due to the impacts of the pandemic. ORF2FHIC staff recorded the proceedings of the listening sessions and used learnings to inform OCCYSHN staff about the experiences of CYSHCN and their families.

 

Two ORF2FHIC phone lines were staffed five days a week by Parent Partners trained and supervised to provide peer support and information to family members of CYSHCN. During the ORF2FHIC program year (June 1, 2020 – May 31, 2021) we provided one-to-one phone support to 273 families and professionals. We maintained Facebook pages (with over 900 followers) in both English and Spanish, where we posted information germane to families of Oregon CYSHCN. We convened a work group that developed a toolkit for families regarding pediatric wheelchairs, and we disseminated the toolkit broadly in Spanish and English. We used social media and newsletters to reach families with timely pandemic-related information from OHSU, the Oregon Governor’s office, OHA, CDC, and FEMA.

 

ORF2FHIC informed a variety of efforts to serve families of CYSHCN. We provided input on the intake forms and materials for OHSU Child Development and Rehabilitation Center (CDRC) Neurodevelopmental Clinics. We reviewed drafts of videos introducing families to telehealth, for the Western States Regional Genetics Network. We helped OCCYSHN’s HERO Kids Registry recruit two parents of CYSHCN and one YSHCN to advise the project, using their first-hand experience with emergency medical systems (Activity 11.10). We trained 211info call center staff on our services, and on other CYSHCN-related information and resources. 211info is a statewide hotline that helps callers identify, navigate, and connect with local resources. They subsequently referred more than 100 families to ORF2FHIC.

 

Building family capacity to care for CYSHCN requires that ORF2FHIC have strong reciprocal relationships with other family-led organizations. We collaborated with more than 20 local, regional, and national organizations serving families of CYSHCN. We initiated a quarterly check-in between OCCYSHN and three key Developmental Disabilities programs, to strengthen communication and collaboration on policy matters. We participated in the Statewide Family Training and Outreach Collaborative, which reduced redundancy and strengthened connections. We updated a product entitled “Oregon Family Organizations,” which we disseminated to families and professionals at virtual trainings and events. We also maintained a listserv of more than 80 Oregon family organizations and CYSHCN-serving programs, which we used to update stakeholders.

 

The pandemic necessitated huge growth in telehealth and remote care for CYCSHN. Two ORF2FHIC staff completed a Family Voices training on telehealth. Through this training and its associated community of practice, we disseminated resources aimed at reducing barriers for families unfamiliar with using telehealth. We administered a Family Voices Telehealth mini-grant that allowed us to collaborate with the Portland-area African Youth Community Organization (AYCO). With guidance from AYCO staff, we modified the Family Voices telehealth curriculum to make it more culturally appropriate for Somali families. We then offered a training about Electronic Health Records, which was attended by 13 family members and nine AYCO staff. Additionally, we conducted a family listening session with the African Family Holistic Health Organization. The main theme that emerged from that session was the need for equitable access to services and information for this underserved group.

ORF2FHIC’s Familia a Familia Spanish language outreach efforts were slowed by the pandemic, and by a coordinator position that proved hard to fill. We continued operating the Spanish language ORF2FHIC phone line. We also maintained a Spanish language newsletter and Facebook page. We initiated a partnership with Oregon’s “Learn the Signs. Act Early” Spanish-language Parent Mentor program. We also worked with OCCYSHN’s Assessment and Evaluation unit to improve our race and ethnicity data collection, with the goal of improving outreach to communities of color.

 

With the help of a summer intern from Oregon State University, we began a “translation” of the OCCYSHN block grant plan into plain language. Carolyn Gleason, MCHB Regional Consultant, reviewed the draft and provided feedback. This work will serve as a springboard for future efforts to engage family block grant reviewers.

 

Activity 11.6. Equity

Because racism and other forms of discrimination affect the health of Oregon CYSHCN, OCCYSHN’s efforts to address medical home for CYSHCN prioritized access, equity, and inclusion. In our efforts to improve systems of care for CYCSHN, we endeavored to be accountable to BIPOC communities and to other underserved populations, including LGBTQIA+ people. We continued internal and external efforts to promote health equity. We embraced cultural humility and sought guidance from diverse stakeholders. We shared learning with our partners through training, dissemination products, and communities of practice.

 

Details on equity-related program and policy activities are included in individual NPM 11 activity sections. Examples include the CaCoon program’s data collection changes, which were informed by data equity experts (Activity 11.4), the Assessment and Evaluation unit’s partnership with culturally specific organizations to conduct needs assessment activities and disseminate results (Activity 11.8), ORF2FHIC’s family training partnerships with culturally specific community-based organizations, and their Spanish-language family support phone line and newsletter (Activity 11.5).

 

Activity 11.7. Systems & Policy

OCCYSHN was a key partner in the Title V MCH/Medicaid collaboration during this period. We agreed to work on issues related to Early Periodic Screening, Diagnosis and Therapy (EPSDT), with a special focus on how Oregon’s 1115 Medicaid Waiver of EPSDT impacted Oregon CYSHCN.

 

OCCYSHN continually monitors health care policy and the process of public health modernization for opportunities to leverage systems change for CYSHCN. We sought strategic relationships and lent our expertise to a wide array of systems and policy activities with the potential to affect CYSHCN. Examples include:

• OCCYSHN’s Director continued on the Oregon Health Authority’s Patient-Centered Primary Care Home Advisory Committee to provide policy and technical expertise.
• We explored the feasibility of coding and reimbursement for primary care providers who participate in PACCT or shared care planning, with the long-term goal of making cross-systems care coordination reimbursable.
• We established a connection with an OHA Transformation Center Analyst, and worked with her to identify policy opportunities related to care coordination and health care transition.
• We provided time and expertise to OHA’s Integrated Care for Kids (InCK) program, to support their care coordination and system integration efforts.

 

OCCYSHN continued to build and nurture relationships with CCOs. We partnered with one CCO in particular on projects affecting tens of thousands of Oregonians. We sat on their workgroup to strengthen systems of care for children aged 0-6 years, and another workgroup on implementing care coordination for Medicaid members. We consulted with a CCO on the development of their strategic roadmap and will continue that effort going forward.

OCCYSHN provided key support for a bill that passed in session in 2021, requiring licensure for genetic counselors in Oregon. OCCYSHN developed a fact sheet for legislators, making a succinct argument for licensure, which allows genetic counselors to bill Medicaid for their services, thereby expanding important coverage for CYSHCN and their families.

 

OCCYSHN worked with traditional health worker (THW) liaisons and the Children’s Health Alliance to develop written technical assistance for primary care practices interested in employing community health workers (CHWs). We presented to the THW Commission on how CHWs can support families of CYSHCN. Commission members reported that the presentation addressed an important gap in knowledge and practice.

 

OCCYSHN recognized the needs of parents/caregivers of CYSHCN and altered policy to allow them to become clients of the CaCoon program. Historically CYSHCN were CaCoon clients; their caregivers were not. This change (starting in 2022) allows CaCoon to address the needs of CYSHCN within their family context. It will also allow LPHAs to bill for Targeted Case Management services for caregivers, helping make CaCoon more fiscally sustainable.

 

OCCYSHN informed medical providers of opportunities for policy input. We referred a CDRC pediatric audiologist to the Speech and Hearing Aids Program Rules Advisory Committee (RAC) where she is now a formal member. We provided technical assistance to a CDRC developmental pediatrician to represent CYSHCN on the State’s System of Care Advisory Council. The Council provides oversight of children’s mental health system planning.

There will be future opportunities to build on the relationships and the policies addressed here.

 

Activity 11.8. Assessment & Evaluation

OCCYSHN’s Assessment & Evaluation Unit (A&E) continued its program evaluation and needs assessment activities for Medical Home strategies and activities in FY21.

 

PACCT

Findings from analysis of PACCT’s first implementation year data follow.

• Clatsop, Coos, Morrow, and Grant LPHAs collectively entered 21 shared care plans into the Activate Care platform. Of all partner types, public health most often logged into Activate Care (AC). The most frequently completed goals were introducing the family to the shared care planning process and determining readiness for a shared care plan.
• Coos and Morrow LPHAs reported using AC to communicate with their standing team members, such as primary care. Clatsop LPHA tailored their use of AC to improve transparency of the shared care planning process for families.
• Across four of five partner types, communication with cross-sector colleagues improved at the end of the first year participating in PACCT. Also, partners more often reported that they were able to share progress with their team members in real time. They reported having a greater sense of knowledge about the shared care planning process for CYSHCN, and greater comfort collaborating with cross-systems professionals on that work.
• OCCYSHN staff provided frequent technical assistance to LPHAs to resolve technical issues using AC. Activate Care may serve as a useful documentation tool to report goals for families; however, teams will need continued support to utilize the platform.

 

Shared Care Planning

Fifteen LPHAs, of the 26 that contracted with OCCYSHN to implement shared care planning in FY21, created or re-evaluated 45 shared care plans. Sixteen of the 45 shared care planning meetings were part of another meeting (e.g., IEP/IFSP, WrapAround). CaCoon public health nurses were the most frequent referral source. Table 11.8.1 describes characteristics of CYSHCN served.

 

Table 11.8.1. Number of Shared Care Plans By Age, Complexity, and Meeting Type
	Total	New	Re-Evaluation
Children Birth – 11 years	40	32	8
Young Adults 13 ≤ 21 years	5	5	0
Complex CYSHCN (i.e., ≥2 condition types (medical, behavioral, developmental, social, other)	42
Source: FY2021 Shared care plan Information Forms from 15 LPHAs

 

 

Twelve LPHAs reported that they did not create or re-evaluate any shared care plans in FY2021, largely due to the continued need to respond to COVID-19 and a lack of capacity as a result of staff turnover. LPHAs described that the pandemic changed the way they implemented shared care planning, e.g., increased use of virtual platforms to conduct meetings and appointments, reduced meeting frequency due to limited staff capacity.

 

ESM/Objective 11.1:

By September 2025, 40% of shared care plans will have a representative

of primary care help LPHAs prepare for or participate in shared care planning meetings.

Progress: 38% (17/45) of shared care plans had a primary care representative participate in shared care planning meetings. We do not know what portion if those helped prepare for meetings, because we created this ESM for our FY2021-2025 block grant cycle. We previously collected data describing primary care participation in shared care planning, but not whether primary care helped with meeting preparation. 36 of 45 LPHAs reported that a primary care representative was part of the shared care plan team; 17 of 36 reported that the primary care representative participated in the meetings in person, by video, by phone, or by written comment. We revised our data collection instrument to fully measure ESM 11.1 progress in October 2021. (See Form 10.)

 

CaCoon

A&E continued to provide evaluation support to the CaCoon program (Activity 11.4). We worked with OCCYSHN’s Systems & Workforce Development Unit and OHA MCAH on aligning nurse home visiting program evaluation.

 

Family Involvement Program

A&E provided evaluation support to OCCYSHN’s Family Involvement Program and the Oregon Family-to-Family Health Information Center, the results of which appear in Activity 11.5.

 

Needs Assessment

In FY2021, OCCYSHN disseminated its 2020 needs assessment results with Latino Community Association (LCA) and Sickle Cell Anemia Foundation of Oregon (SCAFO) as specified in our partnership agreements with each. A key finding was that families of Black and Latino CYSHCN in Oregon experience racism when accessing health (and educational) care for their child. Specifically, we (a) finalized our needs assessment reports, (b) translated our LCA findings into Spanish, (c) prepared topical issue briefs with our Communications Specialist, (d) made numerous presentations of our findings, and (e) are working on a manuscript for submission to a peer-reviewed journal. To date, we have made six presentations, half of which occurred during FY2021. The list of our presentations and topical briefs appears in Attachment 1. Additionally, during OCCYSHN’s virtual regional meetings in spring 2021, our A&E manager facilitated a discussion about the experiences of racism in health care settings, and LPHA efforts to promote health equity and dismantle racism.

 

Oregon’s CYSHCN population includes multiple minoritized communities for which we lack data. We undertook Participatory Needs Assessment (PNA) studies intending that if successful we would conduct additional studies with partners in other minoritized communities. LCA and SCAFO were (and continue to be) exceptional partners. We found tremendous value in the partnership, and our state and local partners valued the findings. Using our learning from the first studies, we began planning a third PNA with a culturally-specific community-based organization that serves Asian and Pacific Islander (API) communities. We selected this community for the following reasons: Asian communities (clustered together) are the fastest growing racial/ethnic population in Oregon, limited data exists about API families of CYSHCN in Oregon, analyses of national health status data for API generally show disparities compared to other racial/ethnic communities, and API experienced heightened racism as a result of the COVID-19 pandemic.

 

As described in Section III.C.1, OCCYSHN’s A&E unit examines National Survey of Children’s Health (NSCH) results with each year’s release of new data, and we continue to work with OHA MCH and other state partners on the NSCH oversample of children from minoritized race and ethnicity communities. During the summer of 2021, MCHB approached Oregon Title V about purchasing a third year of oversample data. We successfully secured funding from our previous state partners, OHA Office of Health Analytics and Oregon Department of Human Services’ Office of Reporting Research, Analytics and Implementation, and OHA’s Child and Family Behavioral Health. This is a meaningful success for Oregon Title V. [As of the writing of this report, we are beginning to analyze 2019-2020 NSCH data, which includes our first year of oversample results. We see benefit from having more data. We look forward to reporting on this work in July 2023.]

 

Activity 11.9. Communications

OCCYSHN developed dissemination products and strategies to advance our Medical Home efforts. Specifics are detailed in the individual NPM 11 report sections. Examples include a series of issue briefs presenting critical findings from our 2020 Needs Assessment. We used trainings, presentations, communities of practice, and learning collaboratives to inform our partners, and to learn from them. We promoted health equity by employing health literacy best practices to communicate with families of CYSHCN, and with community partners serving that population. We disseminated research, analysis, program, and policy information to professional audiences at local, state, and national levels. We shared information with our partners and the public through a comprehensive website, social media and email.

 

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

OCCYSHN was awarded a HRSA EMSC Innovation and Improvement Center (EIIC) grant to further development of the HERO Kids Registry. This registry allows family members of CYSHCN to record critical information about their child’s health, which is then readily available to emergency medical services (EMS) and emergency departments (EDs). With this grant and support from Title V, OCCYSHN was able to contract with a software developer, form advisory committees, and secure partnerships key to operating a statewide registry.

 

Development began with information-gathering. OCCYSHN convened more than 50 local and national EMS and ED providers to ensure HERO Kids Registry’s data fields would provide the most useful information. To better inform the project from a family perspective, OCCYSHN’s Family Involvement Program (FIP) manager sought TA from two family leaders with expertise on EMSC. She consulted with Gina Pola Money from Utah Family Voices about CYSHCN registries, and with Greta James Maxfield from the Texas Parent 2 Parent program about families' experiences of racism when using EMS. To inform the project from a community systems perspective, the FIP manager began outreach to stakeholders from six key state CYSHCN systems (Children’s Behavioral Health, Education Service Districts [EI/ECSE], Children’s Intensive In-home Services, Developmental Disabilities case management, primary care, foster care/child welfare and public health home visiting). OCCYSHN also participated in a national telehealth collaborative with the EMSC EIIC.

 

The HERO Kids Advisory Committee and subcommittees are made up of EMS and ED providers, nurses, primary and specialty care providers, community systems, family, and youth (Activity 11.5). In addition to these committees, OCCYSHN secured key partnerships with OHSU’s Department of Emergency Medicine (to manage Registry operations) and Emergency Communication Center (to provide 24/7 hotline services).

Health Care Transition for CYSHCN Report

 

National Performance Measure 12:

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

 

Report on OCCYSHN Strategies and Activities October 2020 – Sept 2021

 

Strategy 12.

We will increase the number of Youth with Special Health Care Needs (YSHCN) and their families who receive information about transition to adult health care from their providers through family-informed workforce development, quality improvement, systems incentives, and family awareness activities.

 

Activity 12.1. Workforce Development 

OCCYSHN continued to integrate health care transition (HCT) for youth with special health care needs (YSHCN) into CaCoon, shared care planning, and PACCT activities. CaCoon and Babies First! convened a data equity workgroup and included discussion of equitable HCT data collection (Activity 11.4). OCCYSHN contracted with LPHA’s to implement innovative strategies for supporting YSCHN in HCT, providing technical assistance to support them.

 

OCCYSHN continued work on developing an online course for community health workers (CHWs), integrating HCT themes throughout. The course, Supporting Families: Navigating Care and Services for Children with Special Health Needs, provides an overview of CYSHCN, and covers topics including family-centered care, equity, cross-systems care coordination, and the major Oregon systems that serve CYSHCN. The course is designed to equip CHWs with the knowledge and skills necessary to support equitable access to services for all CYSHCN and their families. OCCYSHN’s Family Involvement Program manager contributed to the course content, including offering practice situations and activities drawn from actual family experiences. The CHW course offers a variety of strategies for supporting families of CYSHCN, along with a comprehensive resource guide, and includes content and photos that reflect racial, ethnic and gender diversity. OCCYSHN developed plans to launch the course in October 2021, and to pilot it with various CYSHCN-serving professionals to assess its relevance and usefulness to them. We also developed strategies to leverage the course to promote cross-systems care coordination teams.

 

OCCYSHN developed guidance for nurse home visiting programs on using CHWs. This helped to clarify roles and supported the promise of expanding the home visiting workforce using CHWs.

 

OCCYSHN and OHA collaborated on monthly virtual Community of Practice (COP) meetings, where experts presented, and CaCoon home visitors learned from one another about topics including HCT. Equity-related COP topics included “Racism in Oregon’s Health Care System” and “Supporting Care Coordination for Gender Diverse Individuals.”

OCCYSHN provided professional development and technical support to the CaCoon workforce. OCCYSHN’s Care Coordination Specialist conducted monthly one-to-one meetings with home visiting program supervisors in six counties to provide extended technical support. We developed and disseminated materials offering CYSHCN-related COVID-19 guidance.

 

Activity 12.2. Continuation of Oregon’s CMC CoIIN Project

Block Grant FY21 overlapped with Implementation Years 4 (08/01/20—07/31/21) and 5 (08/01/21—09/30/21) of the HRSA-funded, Boston University-led Children with Medical Complexity Collaborative for Improvement and Innovation (CoIIN). We engaged in the following:

1. Implemented our revised QI intervention, which focused on preparation with a younger group (13-15 year old) young adults with medical complexity (YAMC) rather than on older YAMC closer to an age of transfer
2. Facilitated a BU focus group of families of YAMC led by our Family Leaders: Mrs. BranDee Trejo and Mrs. Ana Valdez,
3. Attempted to expand our QI intervention to a community-based pediatric primary care practice,
4. Applied Malawa et al’s (2021) Racism as a Root Cause framework to our project,
5. Conducted the FESAT and implemented a “CoIIN bi-weekly digest” to improve project transparency for our Family Leaders,
6. Conducted strategic/sustainability planning,
7. Prepared and submitted a manuscript describing our family engagement efforts,
8. Adapted Got Transition and the College of Family Physicians’ Transition Readiness Assessments to better apply to YAMC and their caregivers,
9. Participated in an interview about our team’s interdisciplinary collaboration, which was published in AMCHP’s Pulse,
10. Published our analysis of interviews with caregivers of YAMC in the Journal of Pediatric Nursing,
11. Collaborated with National Alliance to Advance Adolescent Health to propose testing a transition-focused value-based payment to OHA’s InCK team (Activity 12.5),
12. Planned project expansion,
13.  Prepared and piloted educational materials for providers,
14. Completed our BU-required Impact Statement (Attachment 1),
15. Shared project learning with the Oregon Health Policy Board and Medicaid Advisory Committee,
16. Transitioned project activities to focus on dissemination, evaluation, spread/sustainability, and
17. Onboarded a new project coordinator.

 

ESM/Objective 12.1:

By 2025, 60% of young adults with medical complexity (YAMC) or their families enrolled in transfer of care intervention will participate in their scheduled preparation appointments.

Progress: We have no data to report for this year. Our team’s learning resulted in a change to the focus of our clinical QI project, the implementation of which was delayed because OHSU COVID-19 protocol required that we halt our clinical work during this period.

 

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

The Oregon Family to Family Health Information Center (ORF2FHIC) updated our popular family training “Moving from Pediatric to Adult Health Care: An Introduction for Families.”  We worked with family groups to offer this training five times, serving 44 families. A college-aged intern (whose brother is significantly impacted by ASD), adapted our family-oriented curriculum on HCT for youth with disabilities. With support from ORF2FHIC staff, she got feedback on her curriculum prototype from a group of youth with disabilities, along with some of their parents.

 

We developed and disseminated a worksheet to help families communicate with pediatric providers about HCT processes. We featured the worksheet in our newsletter and on our website. We added condition-specific transition toolkits from the American College of Physicians to our website. We also included at least one article or resource on HCT in every ORF2FHIC newsletter.

 

OCCYSHN’s Family Involvement Program (FIP) manager is trained in Supported Decision Making (SDM) methodology, a valuable tool to help people with disabilities make decisions. She participated in a learning community to stay current on SDM themes and resources and presented on SDM to 40 pediatric care coordinators at OHSU Doernbecher Children’s Hospital. Parent Partners also coached patients and families in the OHSU’s CDRC Lifespan Transition Clinic on using SDM. We helped plan and implement OHSU’s Department of Pediatrics’ Developmental Disabilities Month activities, which focused on SDM.

 

ORF2FHIC collaborated with the Child Neurology Foundation to develop an HCT workshop for parents of youth with neurologic conditions. We offered them feedback, resources, and suggestions for ways to include SDM concepts in their work.

 

The FIP Manager provided information about HCT gaps and barriers to Oregon’s Medicaid Advisory Committee (MAC) and its Advancing Consumer Experiences subcommittee. As a result, HCT was included as a policy priority in the MAC’s formal recommendations to the Oregon Health Policy Board. The FIP also provided OCCYSHN’s CoIIN (Activity 12.2) with feedback and recommendations on HCT materials for pediatric providers. 

 

Activity 12.4. Equity

OCCYSHN’s efforts to address HCT for YSHCN continued to prioritize access, equity, and inclusion. In our efforts to improve HCT for YSHCN, we endeavored to be inclusive of, and accountable to, BIPOC communities and to other minoritized and/or underserved populations, including LGBTQIA+ people. We continued internal and external efforts to promote health equity. We embraced cultural humility and sought guidance from diverse stakeholders. We shared learning with our partners through training, dissemination products, and communities of practice.

 

Details on equity-related program and policy activities are included in the individual NPM 12 activity report sections. Examples include the training we developed and launched for Oregon’s community health workers (CHWs) (Activity 12.1), who can improve systems of care by offering culturally and linguistically congruent HCT support to YSHCN and their families. Additionally, OCCYSHN administers an annual distribution of philanthropic funds from the Oregon Community Foundation. These funds are designated to purchase educational equipment for CYSHCN from low-income families. We were able to provide resources to 49 school-aged CYSCHN, many of them transition-aged youth from underserved rural and/or minoritized communities.

 

Activity 12.5. Systems and Policy

OCCYSHN joined a workgroup of state Title V participants and the National Alliance for the Advancement of Adolescent Health (aka Got Transition) to share strategies for integrating HCT goals into special education individualized education programs, or IEPs. We also tracked opportunities to present on HCT at statewide conferences.

 

Our training for community health workers serving CYSHCN and their families will strengthen an important avenue for integrating culturally appropriate services into the system of care for CYSHCN. (Activity 12.1)

 

Got Transition and OCCYSHN proposed to OHA’s Integrated Care for Kids (InCK) team that they include an HCT-focused value-based payment (VBP) approach, which would compensate pediatric and adult providers for work done to support effective transfer of care for young adults with medical complexity (Activity 12.2). OCCYSHN’s CoIIN team identified the lack of payment to providers for transition preparation care as one of the causes of young adults with medical complexity (YAMC) and their families experiencing inadequate HCT support. Toward the end of FY21, we pursued incorporating HCT VBP into the 1115 Medicaid Waiver at the InCK team’s suggestion. The Family Involvement Program Manager also advocated for including HCT in the waiver via her role on the Medicaid Advisory Committee (Activity 12.3).

 

Activity 12.6. Assessment and Evaluation

OCCYSHN’s shared care planning evaluation activities (Activity 11.8) include a focus on health care transition (HCT). LPHAs submitted five Shared Care Plan Information Forms for young adults 12 to ≤ 21 years during FY21. All five were for new shared care plans, as opposed to re-evaluating existing plans. LPHA staff engaged two young adults in shared care planning to help them prepare for HCT. The assessment activities described in Activity 11.8 also include HCT.

 

OCCYSHN’s Assessment and Evaluation unit worked with the Systems & Workforce Development unit to develop the CHW course (Activity 12.1) pre-/post-test and a course evaluation survey. The pre-/post-test quizzes participants on course content and knowledge before and after completing course modules.

 

Evaluation activities conducted for the CMC CoIIN project (Activity 12.2) focus on HCT. Our team interviewed participating pediatric primary care providers about their experience implementing the quality improvement project. A key finding was that the providers needed more concrete instruction on how to work with their patients on HCT. We used these findings to inform provider education content implemented during the fiscal year (Activity 12.2).

 

Activity 12.7. Communications 

OCCYSHN developed dissemination products and strategies to advance and improve Health Care Transition (HCT) for youth with special health care needs. Specifics are detailed in the individual NPM 12 activity report sections. Examples include the CMC CoIIN Project efforts to inform and engage providers about HCT for medically complex young adults (Activity 12.2), and ORF2FHIC products and trainings aimed at HCT for YSHCN and their families (Activity 12.3).

OCCYSHN maintained a comprehensive website and used social media and email to share information with stakeholders. We developed trainings and offered presentations on HCT for YSHCN. We approached communications with an equity lens. We used current health literacy best practices to communicate with YSHCN and their families, and we promoted those practices with partners. We disseminated research, analysis, program, and policy information on HCT to professional audiences at local, state, and national levels.