2019 Annual Report: NPM 11 Medical Home
National Performance Measure 11: Percent of children with special health care needs having a medical home.
Report on Strategies and Activities October 2018– Sept 2019
Strategy 11.1: Support regional care integration by implementing a regional, team-based approach to cross systems care coordination (CSCC) based on modifying AHRQ’s (2011) medical neighborhood strategy.
Of the three original Regional Approach to Child Health (REACH) teams, OCCYSHN continued to support two: one in Central Oregon and one in Southern Oregon. Based on feedback from Local Public Health Authorities (LPHAs) on their capacity, OCCYSHN took a developmental approach and supported a continuum of system improvement activities. Due to the growth of other cross-systems care coordination initiatives supported by OCCYSHN (see Strategy 11.4), this was the last year of REACH. In May 2019, OCCYSHN had a final collaborative meeting with Southern Oregon REACH team partners. The OCCYSHN director and staff helped the team identify next steps for sustaining systems-level work, and for integrating local systems serving CYSHCN and their families. OCCYSHN prepared a data summary for the meeting using existing sources, including the Community Health Assessment, Community Health Improvement Plan, and U.S. Census data - ensuring that the numbers reflected the make-up of the communities. These data summaries presented CLAS-related information, including racial and ethnic data, percent of CYSHCN parents born outside of the U.S., percent of CYSHCN families who do not speak English as their primary language at home, poverty rates, and graduation rates for students with disabilities. Central Oregon REACH opted not to host a final collaborative meeting with OCCYSHN, but they reported that REACH helped them develop new local partnerships (especially with their CCO), and also strengthened connections between the three counties in their area.
The Central Oregon REACH team aimed to align 211info (which connects people with local health and service organizations) with existing tri-county resources. To that end, in October 2018 they organized a training for the public health workforce and other service providers on using a 211info app. The training helped increase community awareness of the resource. REACH partners in Central Oregon found 211info valuable. They advocated on a systems level to establish a 211info Local Community Resource Coordinator position for their tri-county area, but they weren’t able to find funding.
The Southern Oregon REACH team’s project aim was to integrate health care transition guidance into the Oregon Department of Education’s annual transition handbook. Prior versions of the handbook did not address health care aspects of the transition from high school to adulthood. It will now include references to the importance of health care transition planning for youth with special health care needs who are graduating from high school, and it will include some transition tools and resources. The updated transition handbook will be published in fall 2020. The Southern Oregon REACH team was unsuccessful in engaging public health partners from neighboring Curry County to collaborate on their efforts, though other community partners from Curry County did participate. The Southern Oregon REACH team worked on integrating their CCN team into the local system of care, including increased collaboration with Advanced Health CCO. The Coos County LPHA participated on a regional care coordination team comprised of clinical and CCO care coordinators.
Due to capacity concerns for their rural workforce, Eastern Oregon’s REACH team opted not to accept additional funding. Our public health partners on the Eastern Oregon team did, however, use OCCYSHN funds awarded in fall of 2018 to develop shared care planning infrastructure in their community. They worked to form new partnerships and explored opportunities for a care coordination team that met consistently. They successfully integrated their shared care planning work into an existing team comprised of mental health, developmental disabilities services and other co-located partners. This development aligned with their REACH project goal to “provide regional leadership to improve cross-systems care coordination for children and youth with special health care needs as a population.” (See Strategy 12.2 for details on shared care planning infrastructure funding.)
Strategy 11.2: Improve CYSHCN family members’ ability to better understand and actively participate in their child’s health care decision-making by educating them about Medical Home concepts, REACH, SPOCs, HCT, and CLAS.
Oregon Family to Family Health Information Center (ORF2FHIC) conducted 14 trainings/listening sessions in 11 communities in rural, urban, and suburban Oregon. The events were attended by 105 families and youth. They offered comments, suggestions, and impressions about their health care experiences. ORF2FHIC also held four interactive trainings on the following subjects: health care advocacy; transition to adult health care; and resources; and person-centered One Page Profiles. (“One Page Profiles” are used to help convey important things about an individual to their health care providers.) Input from the trainings and interactive sessions helps ground the work of ORF2FHIC and OCCYSHN in the family experience. Families were asked to evaluate the trainings, and the 60 surveys returned indicated that:
- 92% felt that the information/resources they received helped them identify/learn about community services, including primary health care, intervention programs, translation services, and others.
- 93% felt that the information they learned helped them feel more confident about getting their child the health care and services they need.
- 93% felt the information/resources they received will help them partner with professionals to make decisions about their child’s health care.
To support sustainability, in 2019 three new Parent Partners began learning how to conduct Regional Family Gatherings, by shadowing and supporting the Project Coordinator. ORF2FHIC also added two new trainings to its offerings: “Planning for a Trip to the Emergency Room,” and “One Page Profiles for the Medical Setting.” The former was co-developed by ORF2FHIC Parent Partners and professionals representing Oregon Emergency Medical Systems for Children, and is based on a 2019 toolkit of the same name. It was presented at three family events and one professional gathering. “One Page Profile for the Medical Setting” was first presented in January 2019 on a Facebook Live event attended by approximately 12 families. Introducing families to the concept of developing a person-centered One Page Profile has since been integrated into every ORF2FHIC event.
ORF2FHIC served 1,141 families and 270 professionals during its program year of June 1, 2018 – May 31, 2019. Services included training, one-to-one encounters, outreach events, webinars, and emails. The Family Voices Solutions Database was no longer functional, so with the help of OCCYSHN’s Assessment and Evaluation unit and OHSU’s REDCap data collection resource, ORF2FHIC established a new and significantly improved data collection process.
The Parent Partners met twice in person during 2019, and six times more via webinar. Under leadership of the Project Coordinator, the meetings focused on community resources, health care financing, medical home principles, data collection, leadership development, transition to adult health care, and data collection. Parent Partners reviewed written materials for two medical clinics, and offered their family perspective. They offered support to specific families at the request of clinicians at OHSU’s Child Development and Rehabilitation Center (CDRC). They also presented to social workers and other clinical staff at Ronald McDonald House, and at OHSU’s Pediatric Cardiology, Audiology, Spina Bifida, and Child Life about resources for families of children born with the conditions tracked by Oregon’s Birth Anomalies Surveillance System.
Two ORF2FHIC phone lines were staffed five days a week during the program year, and posts were made to the ORF2FHIC Facebook page about three times a week. On September 30, 2019, Facebook analytics showed the page had 595 followers/page likes and 987 “total reaches” for the previous 28 days.
Three ORF2FHIC staff members received scholarships from Arc Oregon to be certified in Supported Decision Making (SDM). They subsequently supported two families to implement SDM. ORF2FHIC also led a Shared Care Planning ECHO session devoted to SDM.
OCCYSHN’s Family Involvement Program Manager presented a poster at the National Emergency Medical Services for Children’s Conference in Washington D.C., highlighting Oregon’s efforts to inform families of CYSHCN about medical protocol letters and the importance of planning for medical emergencies.
ORF2FHIC’s Parent Partner/Resource Specialist produced two new products for families: “Spina Bifida Resources for Youth” and “Coping with a Child’s Death or Life-Limiting Illness.” Both products resulted from work with the Oregon Birth Anomalies Surveillance System, and both were vetted by clinicians, social workers, and families with lived experience. Another product, “Spina Bifida Resources for Families” was translated into Spanish and disseminated to families at the CDRC Spina Bifida clinic.
ORF2FHIC continued to support and inform Spanish-speaking families by staffing a dedicated phone line with a bi-lingual Parent Partner. This Parent Partner also staffed an outreach table in CDRC clinics once a month, where she spoke with more than 40 family members, mostly in Spanish. She shared resources, answered questions, and otherwise supported families during their child’s health visit.
In May, ORF2FHIC worked with a volunteer from the United Cerebral Palsy Latino parent support group to conduct a unique family gathering in a Portland church. The event was entirely in Spanish and included a brief religious service, a festive meal, dancing, and a listening session.
Three other listening sessions with non-white families were conducted in the Portland metropolitan area during the grant year, one with Native American youth, one with Native American parents, and one with Central American parents.
Strategy 11.3: Improve payer and provider responsiveness to CYSHCN by providing or supporting workforce development opportunities focused on the CYSCHN population and their care needs.
CaCoon
CaCoon is a statewide public health nurse home visiting program. CaCoon nurses help families coordinate care for their CYSHCN, and convene shared care planning teams. In 2019, OCCYSHN contracted with 28 Local Public Health Authorities (LPHAs) to implement the CaCoon program in 30 of Oregon’s 36 counties, serving 1,192 CYSHCN in 6,935 CaCoon visits. 87% of CYSHCN served were insured through Medicaid. Transition-aged youth ≥ 12 years made up 14% of CYSHCN served. While OCCYSHN was without a nurse Care Coordination Specialist staff member to support the CaCoon program from June 2018 to March 2019, CaCoon work continued across the state, with the support of other OCCYSHN staff.
In 2019, OCCYSHN’s new nurse Care Coordination Specialist worked closely with the Oregon Health Authority to gain a better understanding of Targeted Case Management (TCM) billing. In conjunction with one of the Oregon Health Authority's State Nurse Consultants, the Care Coordination Specialist developed a new Targeted Case Management training for LPHAs, and delivered that training in Marion, Baker and Washington counties, with subsequent trainings planned for Douglas County Public Health, and an online training to reach other LPHAs throughout the state. This training helps home visiting nurses complete TCM documentation, reviewing frequent scenarios where TCM services are provided. Local home visiting staff identified assigning ICD10 coding to TCM billing as a challenge, and had questions about billing for shared care planning meetings, and for multiple clients in one home. OCCYSHN is working with Medicaid to clarify these matters.
ACCESS (Assuring Comprehensive Care through Enhanced Service Systems)
OCCYSHN continued to support seven of the eight education-medical autism identification ACCESS teams that were still operating following the end of the HRSA state implementation grant in December 2016. The Director of the autism clinic at OHSU and OCCYSHN’s Medical Consultant provided technical assistance with phone consultation and site visits. OCCYSHN put telehealth/teleconsultation equipment into place for two ACCESS sites, and began establishing usage guidelines with those teams. Some team decided to provide sequential medical and educational evaluations for children 0-5, rather than joint evaluations as envisioned by the grant. This change may prove to be a more sustainable approach to community-based educational-medical evaluations. OCCYSHN is developing plans to support ACCESS teams more fully in the next contract year.
Workforce Development
At the request of many LPHA partners, OCCYSHN committed to reinstituting a regular conference to support professional development of public health nurses and community partners. OCCYSHN planned a statewide conference for Spring 2020. Topics covered medical home, transition from pediatric to adult care and CLAS. In in the interest of expanding the workforce serving CYSHCN, nursing and social work students were invited, as well others in care coordination roles around the state.
Coffee Time Webinars
In partnership with OHSU’s Department of Pediatrics, OCCYSHN supported distance-learning opportunities for Oregon health care providers with monthly “Coffee Time” webinars, which offered continuing medical education (CME) credits for physicians. OHSU Pediatrics staff provided administrative support to market and conduct the webinars. OCCYSHN’s Medical Consultant chaired the planning committee, which identified topics and speakers. In FY19, webinar topics included teen anxiety and obsessive-compulsive disorder, family resources (led by OCCYSHN’s Family Involvement Program Manager), adolescent depression screening and risk assessment, iron deficiency, and Adverse Childhood Experiences awareness in primary care. Each webinar lasted 35 minutes and included a didactic presentation followed by questions and answers. Presenters used case reports to demonstrate key points, provide resources, and discuss issues impacting CYSHCN and their families.
Family Involvement Program
Staff from the Family Involvement Program (FIP) helped launch a new statewide professional association for members of the peer support workforce. The Oregon Family Workforce Association (ORFWA) is a 501c6 organization designed to uplift and advance the interests of families supporting other families. In 2019 the FIP Manager led a professional development activity for 50 ORFWA members.
In Fall 2019, the FIP was awarded a “Cutting Edge Practice” designation by AMCHP’s Innovation Station for the “Planning for Meaningful Family Involvement” tool. The tool helps professionals plan for the thoughtful inclusion of family voices in policy-making. The FIP Manager also served as an Innovation Station reviewer for a “Best Practice” application regarding training professionals to provide appropriate materials on newborn screening to families.
ORF2FHIC staff conducted both formal and informal professional development sessions on CYSHCN parents’ perspective with Kaiser Pediatrics, Developmental Disabilities of Multnomah County, North Central LPHA, EHDI program, Health Share CCO, Children’s Intensive In-home Services, and OHA. ORF2FHIC Parent Partners also provided detailed written feedback to OHSU General Pediatrics on their transition and behavioral health materials.
Strategy 11.4: Enhance local community infrastructure to implement child health teams by providing consultation and technical assistance to Community Connections Network (CCN) to become self-sustaining.
OCCYSHN leveraged infrastructure and learning from Community Connections Network (CCN) teams to launch a new project called Piloting ACT.md for Care Coordination Teams (PACCT). Participating in PACCT required LPHAs to develop cross-systems care coordination teams, and to participate in an ECHO-based learning community. Additionally, they piloted the use of ACT.md (a cloud-based electronic platform for sharing care coordination information). OCCYSHN developed a request for proposals for PACCT. Five LPHAs applied, representing seven counties (Clatsop, Coos, Grant, Morrow, Sherman, Gilliam, and Wasco). All five applications were accepted.
PACCT teams were developed and convened by LPHAs. They brought together consistent networks of local professionals to support cross-systems shared care planning for CYSHCN. The teams provided shared care planning for individual CYSHCN and their families, and they monitored and modified those care plans, following families as needed over time. Thus they were able to serve a population of local CYSCHN. The consistent team make-up and meeting schedule help members form cross-sector professional connections, which in turn helped them identify and address issues in local systems of care.
PACCT used the ECHO knowledge-sharing model developed at the University of New Mexico as an evidence-based foundation for a statewide virtual learning community. The learning community used Jeanne McAllister’s “Phases of Family-centered Care Coordination” as a framework. OCCYSHN convened all the PACCT participants virtually for monthly ECHO sessions where participants heard presentations, shared their experiences implementing PACCT, and informed one another’s work.
ECHO and ACT.md both use technology to advance care coordination for CYSHCN, and to improve local and statewide capacity for serving CYSHCN. ACT.md seeks to reduce the communication barriers to shared care planning. OCCYSHN and PACCT LPHAs worked with ACT.md to develop an electronic template for the shared care plan. To promote inclusivity in shared care planning, we added a new “gender identity” field to the template.
Strategy 11.5: Integrate state systems of services for CYSHCN and their families through cross sector collaboration, workforce and system infrastructure development.
OCCYSHN sat on state and local level advisory boards, committees and workgroups to ensure the needs of CYSHCN were represented across the state. We advocated for CYSHCN care needs at every level. We gave input on policy development and dissemination, and provided testimony at local, state and national levels. OCCYSHN submitted both oral and written input to policy bodies and participated on the following: (See strategies 11.4 and 12.2 for more detail.)
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State Level:
- CCO 2.0 Rules Advisory Committee
- Early Hearing Detection and Intervention advisory board (EHDI)
- Emergency Medical Services for Children Advisory Board
- Health Aspects of Kindergarten Readiness Workgroup
- Health Home Rules Advisory Committee
- Medicaid Advisory Board
- Oregon Council on Developmental Disabilities
- Oregon Pediatric Society Board of Directors
- Patient Centered Primary Care Home Standards Advisory Committee
- State Interagency Coordinating Committee
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Portland Metropolitan Area:
- Health Share (CCO) All:Ready Kindergarten Readiness Network
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OHSU
- Institute on Development and Disability (IDD) Diversity Task Force
- Legislative Advisory Council
- Oregon Pediatric Improvement Partnership Steering Committee
- Pediatrics-IDD Leadership Team
- Primary Care Pediatrics Workgroup
- Transition Task Force
OCCYSHN Input on CYSHCN-Related Public Policy
OCCSYHN provided input on public policies with the potential to impact Oregon CYSHCN:
- November 2018: Wrote the Oregon Health Policy Board to advocate for CCO enrollment and rates that supported CYSCHN care needs.
- February 2019: Director testified before the Oregon legislature regarding gun injury prevention for children and youth.
- April 2019: Director testified to the US Consumer Product Safety Commission regarding priorities regarding children, including CYSHCN.
- May 2019: Wrote Oregon’s Joint Ways and Means Committee to support funding for 211info, which provides important information and resources to families of CYSHCN.
- August 2019: Submitted oral and written input to the CCO 2.0 Rules Advisory Committee on proposed care coordination rules with potential to impact CYSHCN. Proposed changes to rules affecting CYSCHN in the following sections: Integration and Care Coordination, Care Coordination Requirements, and Intensive Care Coordination.
- September 2019: Offered OHSU’s University Center for Excellence in Developmental Disabilities (UCEDD) talking points on how the Department of Human Services’ proposed Public Charge Rule could impact CYSHCN. Provided data on immigration status and eligibility for public benefits. The UCEDD team used the talking points during hill visits made as part of the 2019 Association of University Centers on Disabilities conference.
- 2019: Director co-authored a policy statement for the American Academy of Pediatrics regarding transportation for CYSHCN (O’Neil, Hoffman, AAP Council on Injury, Violence, and Poison, 2019).
Collaboration with 211Info
OCCYSHN’s Family Involvement Program (FIP) and ORF2FHIC collaborated with 211info. This continued an effort begun with the D70 Enhancing Systems of Care for CYSHCN state implementation grant. The goal of the partnership was to increase 211info’s knowledge of CYSHCN-related resources, and to encourage referrals to ORF2FHIC as needed. 211info administers a voluntary follow-up survey to callers, to collect data about whether callers contacted the referrals, and if so, whether their needs were met. OCCYSHN continued its financial support for collecting these survey data and provided professional development to 211info staff. The ORF2FHIC Coordinator trained 211info staff on who and how to refer to ORF2FHIC. She trained 211info staff on how to engage families in conversations that clarify unmet needs. The trainings provided ORF2FHIC with insight into the sorts of issues that might lead families to call 211info. The ORF2FHIC Coordinator worked with 211info to simplify their website’s connection to ORF2FHIC. OCCYSHN’s Assessment and Evaluation unit met quarterly with 211info to discuss follow-up survey and referral data from 211info’s Child Care Line and Maternal and Child Health (MCH) call lines.
211info made 197 referrals to ORF2FHIC. 28 people who called the Child Care and MCH call lines responded to the follow-up survey. Of those 28 respondents, 96% reported receiving a list of referrals, and 39% reported receiving the services that they needed from the referred agency.
Emergency Medical Systems for Children (EMSC)
The Family Involvement Program (FIP) Manager served as the Family Representative to the Oregon EMSC Advisory Board. Working with physicians, EMTs, health systems, and nurses, and with input from the ORF2FHIC Parent Partners, she spearheaded development of a toolkit for families on planning for health care emergencies. OCCYSHN’s Communications Coordinator designed and edited the toolkit. The FIP Manager introduced it at the August 2019 national EMSC meeting. ORF2FHIC disseminated the toolkit through Oregon Children’s Intensive In-home Services program. ORF2FHIC and EMSC also collaborated to disseminate the information on social media.
Medicaid Advisory Committee
The FIP Manager continued her second term representing CYSHCN on the state’s Medicaid Advisory Committee (MAC). She helped the committee craft guidance for Coordinated Care Organizations on social determinants of health, and on health-related services.
Patient Centered Primary Care Home (PCPCH) Standards Advisory Committee
OCCYSHN’s director was selected as the only pediatrician on PCPCH Standards Advisory Committee, which provides the Oregon Health Authority with policy and technical expertise for the PCPCH model of care. He advocated that the PCPCH standards support children, youth, and families (especially CYSHCN).
Strategy 11.6: Conduct ongoing assessment of Oregon’s CYSHCN by developing studies focused on subpopulations of CYSHCN.
Ongoing assessment of Oregon’s CYSHCN consisted of the following four primary activities:
Children with Medical Complexity in Medical Home Practices
OCCYSHN’s Assessment and Evaluation (A&E) unit continued its collaboration with Neal Wallace, PhD, a health economist with the OHSU-PSU School of Public Health. Dr. Wallace and colleagues completed an evaluation of Oregon’s Patient-Centered Primary Care Home (PCPCH) program in September, 2016. The study examined program implementation and outcomes from the first four years of the program. Dr. Wallace led quantitative analyses to examine changes in service utilization and costs for patients cared for in PCPCH versus non-PCPCH primary care practices. The OCCYSHN A&E Manager (Alison Martin, PhD) collaborated with Dr. Wallace in replicating these analyses for Children with Medical Complexity using the Pediatric Medical Complexity Algorithm (PMCA; Simon et al., 2014). Sara (Sally) Bachman, PhD from the Catalyst Center, consulted on the project. During FY19, Drs. Wallace and Martin continued to work on the analyses, working through challenges associated with using the PMCA for this analytic purpose. In May 2019, Shreya Roy, PhD, OCCYSHN’s newest A&E Research Associate, joined Drs. Wallace and Martin in this work. Drs. Martin and Roy also began work with OCCYSHN’s Communications Coordinator to develop dissemination briefs.
CYSHCN with Behavioral/Mental Health Conditions
Olivia Lindly, PhD, led the manuscript revisions of a previously prepared manuscript that Dr. Lindly, Kate Lally, MSW/MPH (OCCYSHN GSEP intern 2016), and OCCYSHN’s A&E Manager prepared. The manuscript summarizes analyses using 2009-2010 NS-CSHCN data. We first submitted the manuscript to the Maternal and Child Health Journal, which rejected the publication. Per MCHJ publisher’s recommendation, we resubmitted the manuscript to the Community Mental Health Journal.
NSCH Oversample
OCCYSHN’s A&E Manager (Alison Martin, PhD) and MCH’s A&E Manager, John Putz, PhD, attended the October 2018 MCHB Title V technical assistance session on the oversample and scheduled a state meeting with Ashley Hirai, PhD, MCHB Office of Epidemiology and Research Senior Scientist, and US Census Bureau colleagues. We shared this information with partners (OHA State Medical Director, OHA Office of Health Analytics, Oregon Pediatric Improvement Partnership) and identified a group of state-level partners to explore purchasing a state oversample. Dr. Martin collaborated with Suzanne Zane, DVM, MPH, Senior MCH Epidemiologist, and Elizabeth Stuart, MPH, Child Systems Collaboration Coordinator, to facilitate the group. Beginning in February 2019, the group met on a monthly basis to determine the focus of the oversample (i.e., child characteristic or geography), work through methodological issues, and obtain cost estimates. Drs. Martin and Zane liaised with Dr. Hirai, Scott Albrecht and his colleagues from the US Census Bureau to share information and answer partner questions. In June, the group agreed on an approach for oversampling children from non-dominant races and ethnicities over two years at a cost of $146,183. The Title V and Title V CYSHCN directors discussed funding for the oversample with OHA’s Office of Health Analytics and Department of Human Services Reporting, Analytics, and Information. In July, each entity (Title V, Health Analytics, and DHS) agreed to pay one-third of the cost of the oversample. OCCYSHN will serve as the contract signatory with the Census Bureau to expedite the contracting process.
Oregon Title V is extremely (a) grateful to Dr. Hirai and Mr. Albrecht for their energy, information, and time helping us develop an oversample that works for our state, and (b) proud of the collaborative efforts to develop and purchase the sample, and (c) excited to have NSCH results that include the oversample in 2022.
Five Year Needs Assessment
For the 2015 needs assessment, OCCYSHN developed and administered four surveys, one of which collected data from families of CYSHCN. Although the response to the survey was tremendous with return of almost 600 usable surveys, the data did not well represent families of CYSHCN who are members of communities of Color. Therefore, OCCYSHN decided to use a participatory needs assessment approach for the 2020 needs assessment. A participatory approach differs from traditional approaches in that the community being studied is involved in the design and implementation of the research process and has been used for other MCH needs assessments (e.g., Wang and Pies [2004] in Contra Costa County, California). A&E identified populations of CYSHCN about which OCCYSHN needs more information. A&E solicited input from OCCYSHN staff broadly, and identified eight populations of CYSHCN. A&E presented staff with a proposal for testing a participatory needs assessment with intent to focus on three populations. We used nominal group technique, a consensus-building tool, to choose three populations on which to focus: African American/Black CYSHCN, Latinx CYSHCN, and CYSHCN with behavioral/mental health conditions. If this approach proves successful, we will use it again in the future to learn more about the five populations that were not selected this time.
In March, A&E began drafting a Request for Proposal (RFP) to contract with two community organizations: one that works with African-American/Black families, and one that works with Latinx families. We sought feedback from an ORF2FHIC Parent Partner who had experience working for an organization that serves one of these communities. We asked him what his reaction would be if the Request had come across his desk at that organization. He provided us with two rounds of excellent feedback. One of the most important points he made centered on a dominant culture organization (OHSU) “owning” the findings. He proposed that OCCYSHN instead seek to build capacity for the contracted organization to be the voice for CYSHCN within their community. This resulted in an important shift in thinking for OCCYSHN; that is, that part of our CYSHCN advocacy role includes building relationships and capacity for other organizations to advocate for CYSHCN in their respective communities.
Based on the feedback from our Parent Partner, we switched from an RFP to a Request for Information (RFI), so we could first assess whether our approach was palatable to community-based organizations. We used RFI responses to inform and finalize our RFP. The RFP Scope of Work asked community-based organizations to collaborate with OCCYSHN to (1) co-develop a partnership agreement, (2) co-develop and participate in mutual training, (3) co-develop a data collection method, including an Institutional Review Board (IRB) protocol, (4) implement data collection, (5) co-develop an analysis plan and participate in data analysis if desired, (6) co-interpret results, (7) co-disseminate findings, and (8) participate in project meetings with OCCYSHN. Only organizations that responded to the RFI could respond to the subsequent RFP. Exhibit 11.6.1 shows our timeline for awarding contracts to both the Latino Community Association (LCA) and the Sickle Cell Anemia Foundation of Oregon (SCAFO). For the remainder of the year, OCCYSHN jointly developed partnership agreements with each organization (see Appendix 1); developed the needs assessment questions, data collection methods and Institutional Review Board (IRB) protocols; and helped LCA and SCAFO project teams complete training for study team members.
OCCYSHN and the OHA Adolescent and School Health section (ASH) began collaborating on a Photovoice project for youth with special health care needs (YSHCN) aged 16 through 22 years who experience behavioral or mental health conditions. Photovoice is a method that “involves providing community people with cameras so that they can take pictures of their everyday health and work realities and use these pictures as the basis of group discussion and action” (Wang & Pies, 2004, p. 184). OCCYSHN and ASH plan to recruit a small, diverse group of YSHCN in the Portland metropolitan area. Working locally will allow us ready access to support the youth in the project. If this model proves successful, we will seek to expand it to other areas of the state. OCCYSHN prepared recruitment materials and drafted an IRB protocol, with ASH’s input. ASH also began communications with OHA’s IRB equivalent.
Strategy 11.7: Develop evidence that may show support for the benefit of care coordination for Oregon CYSHCN by designing a study to evaluate SPOC.
Assessment and Evaluation (A&E) staff continued to collect and analyze shared care planning (see Strategy 12.2) process evaluation data. Staff modified data collection instruments and disseminated results to LPHA partners and others.
Implementation Findings
Analysis of process evaluation data showed that 21 LPHAs created or re-evaluated 106 shared care plans for Oregon CYSHCN in 2018-2019. A Shared Care Plan Information Form (SIF) was submitted for each meeting. Of those
- 85 SIFs were for children birth to 12 years.
- 50 were new shared care plans.
- 35 were re-evaluated shared care plans.
- 21 SIFs were for young adults 12 to ≤ 21 years.
- 16 were new shared care plans.
- 5 were re-evaluated shared care plans.
- 85 SIFs were for CYSHCN identified as complex; that is, ≥2 condition types (medical, behavioral, developmental, social, other).
- CaCoon public health nurses were the most frequent referral source for shared care planning.
Outcome Evaluation
A&E sought to improve its family survey data collection, which OCCYSHN administers in the months following each shared care planning meeting. OCCYSHN consulted with Jeannie McAllister, BSN, MS, MHA, A&E for feedback on the family survey. In response to her advice, OCCYSHN added two of the three Parent Empowerment Scales (Koren et al., 1992) used by Ms. McAllister and colleagues, and shortened the survey instrument to items that would be most important to families. After revising the instrument, OCCYSHN pretested the survey with six parents, some who received shared care planning and some who did not, and with a Spanish-speaking parent. These parents resided in Central and Southern Oregon and the Portland metropolitan area. Results of the pretests informed minor, final revisions to the family survey.
To address poor response rates to the Family Survey, we also changed the manner in which it is administered. Previously, LPHAs presented families with a study interest form, and asked them to sign it if they were interested in completing a survey. If the family was interested, LPHA staff would fax the signed form to OCCYSHN. A&E obtained OHSU Institutional Review Board (IRB) approval to modify the Shared Care Plan Information Form (SIF) to collect family contact information. LPHAs complete the SIF following each shared care planning meeting. Submitting the family’s contact information to OCCYSHN relieves LPHAs from having to discuss the study with the family.
Dr. Martin and Katharine Zuckerman, MD, MPH, considered revising our MCHB R40 FIRST impact evaluation grant proposal submitted in 2017-2018, but ultimately decided to wait until OCCYSHN finalized some programmatic changes.
CityMatCH Presentation
A&E presented year one formative evaluation findings focused on transition to adult health care at CityMatCH in 2018. We stated in our 2017-2018 report that we would share findings from this presentation in our 2018-2019 report. Select slides from this presentation follow.
2019 Report: NPM 12 Health Care Transition (HCT)
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 Strategies and Activities October 2018– Sept 2019
Strategy 12.1: Increase the number of family members of YSHCN who are informed about HCT through community conversations and the dissemination of resources based on Got Transition materials.
The Family Involvement Program (FIP) Manager sits on the Advisory Board, the Implementation Team, and the Core Team for the Oregon’s Children with Medical Complexity (CMC) CoIIN project. Oregon’s project focus is transition from pediatric to adult health care. In this role, she helped coordinate interviews conducted with 12 families of children with medical complexity. A number of families reported challenges in the transfer from pediatric to adult specialty care. Because the focus of the CoIIN is transfer from pediatric to adult primary care, the FIP Manager initiated collaboration with the CDRC Transition Lifespan Clinic (TLC) to help families with transitions to adult specialty care.
The FIP Manager and the TLC met three times to design a toolkit for families to be used in their child’s 16th or 17th year to help them find adult medical specialists. The 48 page workbook draft will be vetted with parents of transition-aged youth in March, 2020. The workbook draws on materials from the ORF2FHIC, Got Transition, and the University of South Florida. The goal was to help families whose youth experience Intellectual/Developmental Disabilities, as well as those who do not, and, and to help families navigate the transition to adult health care in general.
The ORF2FHIC workshop “Planning for a Healthy Transition” was presented six times in five communities, reaching 124 families. The training included activities to spark awareness of the upcoming transition in health care, orientation to “Got Transition” readiness checklists, a review of ways for families to identify potential adult health care providers, examples of key questions to ask both pediatric and adult providers, and an introduction to a One Page Profile to introduce CYSHCN to new health care providers.
Twenty-seven youth participated in two listening sessions focused on their experience with health care as they near transition age. One session was comprised of Native American youth from Portland. The other was held at the Kidney Kids Camp in Turner Oregon, which draws teens from Oregon and southwest Washington. The discussions centered on whether or not youth experienced barriers in health care, and if they did, how they overcame them. Many noted that they were unaware of barriers or problems but if there were any, their parents managed them. One youth commented, “My mom is there and I am lucky.” Some youth noted that they could use more support for healthy eating, and others discussed concerns about working with school nurses. Both groups discussed what they felt youth could do to promote their own health care, and highlighted such things as “We can ask for help” “share our experiences” and “help each other.” Both groups included youth who said that mental health needs should be considered part of overall health.
Strategy 12.2: Enhance cross systems care coordination for CYSHCN by building county public health workforce capacity to lead or participate in shared care planning that includes transition-aged youth.
CaCoon
CaCoon is a statewide public health program that provides community-based care coordination for CYSHCN (0-21 years old) through nurse home visiting and shared care planning. Since integrating shared care planning into the CaCoon workflow, OCCYSHN has encouraged the public health workforce to target services to transition-aged youth. OCCYSHN has also focused technical assistance on building capacity for the public health workforce to support youth and families with the transition from pediatric to adult health care.
In March 2019, OCCYSHN hired a new nurse Care Coordination Specialist to support the CaCoon program. The new Care Coordination Specialist visited 14 LPHAs in person to gain a better understanding of the CYSHCN work happening in their counties, and to learn what they need to serve transition-aged youth. Each meeting covered the following: staffing and staff roles; documentation and use of electronic record-keeping systems; county-level training of new staff; community collaboration and community understanding of the work; barriers to serving transition-aged youth; Targeted Case Management billing; collaboration with Coordinated Care Organizations (CCOs); and caseloads. These meetings strengthened OCCYSHN’s relationships with the public health workforce. OCCYSHN learned about the successes and challenges LPHAs encountered as they implemented CaCoon, and offered individualized technical assistance. These visits provided context that informed OCCYSHN’s statewide planning efforts.
Several LPHAs reported difficulty identifying transition-aged youth to serve, and a shortage of local community resources for this age group. CaCoon nurses serve mostly CYSHCN aged 0-5 years. Despite these challenges, there was steady improvement in the number of transition-aged youth who received shared care planning. Clackamas County developed a relationship with the CDRC Lifespan Transition Clinic in Portland. The CaCoon nurse attends the clinic’s meetings regularly to discuss her transition-aged clients. The clinic appreciates the opportunity for closed-loop referrals to community resources. OCCYSHN shared tools and resources for LPHA nurses and community health workers to use with transition-age youth. These included the following tools from Got Transition: a) transition readiness assessments for youth and caregivers; b) transition readiness assessments in Spanish; c) transition readiness assessments for youth with intellectual disability; and d) a coaching tool to use with families to gauge their attitudes towards planning for transition. OCCYSHN also developed and shared sample language to guide discussion with families and youth, and a transition planning timeline. OCCYSHN provided technical assistance to some LPHAs on implementing shared care planning for transition-aged youth.
Turnover in the CaCoon workforce was high, and new hires were often inexperienced. A shortage of nurses in rural areas impacted LPHA capacity. Three new nurses completed the CaCoon orientation for LPHA staff, which consists of a PowerPoint curriculum, an assessment, and participation in a 30-60 minute three-way phone call with the nurse trainee, their supervisor, and OCCYSHN’s Care Coordination Specialist. During the call, the group discusses the new nurse’s knowledge of CYSHCN needs, and their plans for continuously improving their CaCoon practice.
Additionally, in partnership with the OHA’s Maternal Child Health (MCH) Nurse Team, OCCYSHN developed a series of three web-based gatherings for LPHA staff who are in their first couple years of CaCoon and/or Babies First! work. The objectives of these gatherings were to: a) provide an introduction or review of both programs; b) ensure that all staff have access to and know how to access trainings and resources; c) review required documentation and data entry; d) create an opportunity to support and learn from each other; and e) answer specific questions from staff. Nine staff attended, including both nurses and Community Health Workers. The September 2019 meeting included an overview of both programs, descriptions of target populations, a home visiting competency review, the basics of Targeted Case Management billing, and training resources.
OCCYSHN’s Care Coordination Specialist participated in planning meetings for the development, training, and rollout of a new data collection system for LPHAs: Targeting Home Visiting Effectiveness (THEO). Additionally, the Care Coordination Specialist met monthly with the OHA MCH Nurse Team to ensure that statewide home visiting programs aligned. This collaboration was important given overlap in the local public health workforce. Twenty-six of 29 LPHA staff who implement CaCoon also implement Babies First!, which is OHA’s MCH public health nurse home visiting program for expecting mothers, infants, and children up to five years of age.
Shared Care Planning
OCCYSHN explored ways to support a learning community for public health staff who engage in shared care planning. We shifted from a monthly didactic webinar format to using the University of Mexico’s Project ECHO Model, which emphasizes case-based learning and group problem-solving. All OCCYSHN implementation staff took part in a three-day immersion training in Albuquerque, NM, to understand how to implement and support the ECHO model. Each ECHO session features a short, 15-20 minute didactic presentation, with the rest of the session devoted to case-based learning. Instead of shared care planning cases, which can be too narrowly focused on individual children and conditions, partners shared “practice situations,” which outlined shared care planning themes like workflow, partnership development, or systems challenges. Feedback from participants was generally positive, especially when sessions featured special guest presenters. Following each session, OCCYSHN shared relevant materials, recordings, and other resources in Box—a secure, cloud-based platform—where partners could access the materials at their convenience.
The transition to the ECHO model occurred incrementally over the last year. We incorporated aspects of case-based learning as early as December 2018, when we began a three-part monthly series on shared care planning for a hypothetical transition-aged youth. Other monthly technical assistance topics focused on culturally and linguistically appropriate services, including communicating clearly about shared care planning, and hosting attorneys from the Oregon Law Center and Immigration Counseling Service to discuss immigration law and public benefits. Sessions on family-centered issues included communicating with families about shared care planning, and linking shared care planning goals to family-led organizations and resources. Most sessions included the Family Involvement Program Manager as an expert panelist representing the family perspective. Official ECHO sessions started in April 2019, when the Doernbecher Lifespan Transition Clinic talked about goal-setting and prioritization for YSHCN.
OCCYSHN staff consulted monthly via virtual meetings with Jeanne McAllister, BSN, MS, MHA, a national subject matter expert on medical home and shared care planning. OCCYSHN’s shared care planning for CYSHCN got national attention in October 2018, when it was featured in a National Academy for State Health Policy (NASHP) report entitled “State Strategies for Shared Plans of Care to Improve Care Coordination for Children and Youth with Special Health Care Needs” (Wirth et al., 2018). The report was published online with an accompanying webinar featuring OCCYSHN staff and Jeanne McAllister.
ESM 1: Percent of shared care plans initiated or re-evaluated by county public health departments contracting with OCCYSHN that serve transition-aged youth 12 years and older. The FY18 objective was 15%, and 19.3% of shared care plans created or re-evaluated served CYSHCN in this age group.
ESM 2: Percent of the shared care plans that are initiated or re-evaluated for youth that address transition planning. Our FY18 objective was Our FY18 objective was 85%, and 66.7% of shared care plans addressed transition planning (see Form 10 for more detail).
Regional Meetings
OCCYSHN continued to host annual regional meetings with public health partners statewide. In 2019, regional meetings were held in Salem, Tualatin (Portland metropolitan area), La Grande, Roseburg, and Bend. The relationship between the shared care planning process and CaCoon practice was an ongoing topic of discussion at the meetings, where local public health partners worked in tandem with their colleagues and community partners. Together, they brainstormed new strategies and reflected on the successes and challenges of implementing shared care planning. OCCYSHN’s Family Involvement Manager and Director each led interactive sessions with meeting attendees.
As a highlight of the annual Regional Meetings, Jeanne McAllister spoke via Zoom conference about her practice-based workflow for shared care planning, and the importance of co-producing care plans with families. Despite the technical challenges of hosting five remote sessions, partners in remote parts of the state benefitted from her expertise and consultation.
Contracts and Funding
OCCYSHN maintained the LPHA CaCoon contract requirements that 70% of the award be used to implement shared care planning and 30% to support the implementation of home-visiting services. OCCYSHN allowed some flexibility in scopes of work based on LPHA and community needs, and where there were opportunities for innovation in cross-systems care coordination for CYSHCN.
In fall of 2018, OCCYSHN awarded supplemental funding to 28 public health partners implementing shared care planning. The funds were intended to help partners build the community infrastructure necessary to support shared care planning more robustly, including developing partnerships, processes, policies, tools, and technology. OCCYSHN provided guidance on how to use the funds, integrating a quality improvement approach. LPHAs were encouraged to develop change packages to improve their shared care planning work. They shared their ideas about using the infrastructure funds with one another. OCCYSHN intentionally allowed for flexibility in how LPHAs used the funds.
OCCYSHN tracked the use of the infrastructure funds with additional questions on the End of Year Report required of all contracted partners. About two-thirds of contracted LPHAs reported using all the additional funding, and about one-third reported using some of it. Most reported that the infrastructure funds were used to develop new partnerships for shared care planning, such as with local medical providers or Developmental Disabilities offices. About half developed new processes to support shared care planning, such as a referral process between public health and education, or translation services to increase meaningful language access. Six LPHAs developed shared care planning templates for electronic health records. These templates were shared on Box for other LPHAs to adopt or adapt.
Some examples of infrastructure fund investments include projects developed by North Central Public Health District (NCPHD), Deschutes County Public Health, and Marion County Public Health. NCPHD, which encompasses three counties, used part of their infrastructure funds to host outreach meetings in The Dalles and Moro. In these meetings, the OCCYSHN director was invited to present to local health care providers about shared care planning, and opportunities to participate on North Central’s developing care coordination team. Other counties improved their infrastructure for shared care planning by developing tools and integrating technology. Deschutes County, for example, developed a smart phrase in their electronic health record that allowed them to quickly locate a child or youth’s shared care plan. Finally, Marion County planned and hosted a conference on the transition from pediatric to adult health care. They invited local and statewide partners to share strategies and resources to improve systems of care for transition-aged youth.
Innovation
Due to workforce capacity issues, two LPHAs were not able to implement the CaCoon program this contract year. Instead, they focused on innovative ways to meet care coordination needs. OCCYSHN and Umatilla County Public Health began collaborating on a care coordination needs assessment for CYSHCN, while Josephine County Public Health began exploring a new, collaborative model of care coordination.
Strategy 12.3: Increase the capacity of adult providers to provide care for transition YSHCN by conducting professional development activities using Got Transition resources with 4 adult practices.
OCCYSHN continues to build staff capacity to support adult health care providers on addressing transition. OCCYSHN staff have developed expertise in transition by a) developing transition materials for LPHAs, b) researching Oregon-specific transition information in preparation for a technical assistance visit from the National Alliance to Advance Adolescent Health, c) participating in a visit with Got Transition, d) participating on the OHSU Transition Task Force and e) attending a transition-related trainings.
As OHA was planning for the second round of contracts with Coordinated Care Organizations, Oregon’s Governor directed that contract efforts be aimed at four key areas, one of which was “increasing value and pay for performance.” Given this state context and the potential to bolster transition work, OCCYSHN requested technical assistance from the National Alliance to Advance Adolescent Health (NAAAH) on value-based payments. Staff prepared for the site visit by researching policies on CCO rules, reimbursement CPT codes, and other state regulations. NAAAH staff provided two days of technical assistance for five OCCYSHN staff and two providers from OHSU’s General Pediatrics and Adolescent Health Clinic. OCCYSHN collaborated with NAAAH to develop a plan to promote value-based payment for the transfer from pediatric to adult care. The next steps will support CMC CoIIN efforts (see below).
OCCYSHN continued to collaborate with OHSU Institute on Development and Disability’s (IDD) Lifespan Transition Clinic (LTC). The clinic assesses transition needs and helps families and youth identify transition goals. Youth are referred by OHSU General Pediatrics and pediatric specialty clinics. OCCYSHN supported relationships between the Lifespan Transition Clinic and two LPHAs that were working with local medical homes to coordinate care for youth with special health care needs (YSHCN) and their families.
OCCYSHN collaborated with IDD and OHSU General Pediatrics to put together a town hall event focused on autism and transition. A panel of professionals representing various systems, youth and young adults experiencing autism, and parents of youth with autism shared their perspectives on transition. The panel took questions from an audience of about 100 parents, youth, and professionals.
OCCYSHN participated in a workgroup to develop OHSU Transition Guidelines. The workgroup also included representatives from General Pediatrics and Adolescent Health, General Internal Medicine, Child Development and Rehabilitation Center, Knight Cardiovascular Center, Schnitzer Diabetes Center, and the Office of Clinical Integration. The guidelines, which provide structure for undertaking transition work, were approved by the Clinical Knowledge and Therapeutic Executive Committee and the OHSU Professional Board. The workgroup is developing a plan for dissemination and implementation among all OHSU departments, and is also informing the development of a transition template to be integrated into Epic’s Healthy Planet module. Future work for the group will focus on the transfer to adult care.
OCCYSHN provided technical assistance to Marion County Public Health Department to develop a conference focused on cross-systems care coordination for transition. The goal was to share transition information, and to increase local partnerships for serving YSCHN. OCCYSHN presented at the conference. Marion County Public Health’s efforts were supported with shared care planning infrastructure funds from OCCYSHN.
OCCYSHN provided technical assistance to the Coos County LPHA to support their systems-level transition work, and to build the capacity of local healthcare providers.
Children with Medical Complexity (CMC) CoIIN Project
To align with our state Title V CYSHCN priority, Oregon’s CoIIN project focuses on health care transition. FY19 overlapped with CoIIN project years two and three. During this time, members of the Advisory Team formed three workgroups. Each workgroup explored the feasibility of a quality improvement strategy that aligned with one of our prioritized root causes. The workgroups focused on the following strategies: (1) Explore a payment approach that incentivizes adult providers to work with Young Adults with Medical Complexity (YAMC); (2) Test the use of a payor-level structure to facilitate transition between pediatric and adult medical and mental health providers; and (3) Develop and test an eConsult model for adult providers to use when working with YAMC, based on the work of Anderson et al. (2018) and the Oregon Psychiatric Access Line - Kids (OPAL-K). After consulting with Boston University’s grant leadership and our state coach, we agreed to focus our clinical quality improvement project on the second option.
We met initially with a health plan administrator who works with three of Oregon’s Coordinated Care Organizations (CCOs). She expressed interest in exploring how their Regional Care Team concept for adults could support transfer of care for YAMC. Unfortunately, the timing of our project development coincided with OHA’s release of the next round of CCO contracts (“CCO 2.0”). Therefore, no CCO had bandwidth to explore a project with us.
As an alternative, we collaborated with Reem Hasan, MD, PhD, and Reyna Lindert, PhD, RN. Dr. Hasan is an Internal Medicine/Pediatric Physician (“med peds”) and leads the Complex Care Collaborative at Doernbecher Children’s Hospital’s General Pediatrics and Adolescent Health Clinic. Dr. Lindert is a clinic nurse with significant experience in care coordination. We formed a CoIIN Implementation Team consisting of our Oregon CoIIN Principal Investigator (Alison Martin), Project Coordinator (Shreya Roy), OCCYSHN Family Involvement Program Manager (Tamara Bakewell), CoIIN Family Representatives (Ana Valdez, BranDee Trejo), OCCYSHN Systems & Workforce Development Manager (Marilyn Berardinelli), OCCYSHN Assessment & Evaluation Research Associate (Sheryl Gallarde-Kim), Dr. Hasan, and Dr. Lindert. The Implementation Team started developing a three-stage process for transferring YAMC from pediatric to adult primary care. Drs. Hasan and Lindert worked with OHSU Hospital research analysts to develop a reporting tool to identify YAMC aged 17 years and older still seen in the pediatric clinic, and a workflow for asking pediatric PCP permission to approach the family about the project. Implementation of the QI project began in September 2019 and is ongoing.
In March 2019, Ms. Bakewell, Ms. Trejo, Ms. Valdez, and Dr. Martin presented at AMCHP’s annual conference in San Antonio. The presentation, entitled Creating Meaningful Settings to Strengthen Family Involvement, described Ms. Trejo and Ms. Valdez’s roles on the CoIIN Advisory Team and their unique roles in developing a data collection method and collecting interview data for the environmental scan. Presenters also talked about team processes that supported their meaningful involvement. The presentation is available on YouTube (https://www.youtube.com/watch?v=AUjGEh8Cb74).
Strategy 12. 4: Increase pediatric provider awareness of transition services by incorporating HCT assessment in adolescent well visits.
OCCYSHN and OHA MCH Adolescent Health were planning to integrate transition readiness assessments into the OHA Adolescent Well Care Guide in line with the OHA Transformation Center. A CCO metric on increasing overall adolescent well-care rates for young adults 18-21 was expected to drive this work. We stopped work on this effort when the metric was changed, effectively eliminating the driver for change.
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