Cross-Cutting/Systems Building Domain

 

Toxic Stress, Trauma, ACEs and Resilience: OHA MCAH Report

(October 2020 – September 2021)

 

State Performance measure 1

1. Percentage of new mothers who experienced stressful life events before or during pregnancy.
2. Percentage of mothers of 2-year-olds who have adequate social support.

 

Trends in SPM data

1A. The percentage of new mothers who experienced stressful life events before or during pregnancy in Oregon is based on PRAMS data. The reporting year data for 2016-2020 reflects PRAMS data from 2014-2018. During that period, the indicator varied between 41.3 and 44.8 percent, but not did trend in either direction. Knowing that over 40% of women experience stressful life events before or during pregnancy is a reminder of the importance of Title V and other services being focused on support for women and families during the perinatal period. As our data catches up to the pandemic in future years we anticipate that it will reflect the higher levels of stressful life events that we know have accompanied the pandemic for our MCH population.

 

1B. The percentage of mothers of 2-year-olds who have adequate social support in Oregon is based on PRAMS 2 data. The reporting year data for 2016-2020 reflects PRAMS data from 2015-2017. Over the course of those 3 years the percent increased from 68.7 to 92.5. However, this trend should be interpreted with caution as it may be unreliably high and subject to reporting or other biases. This SPM was discontinued after the first year of the current 5-year cycle and will no longer be reported.

 

Toxic stress/Trauma/ACEs/Resilience Strategy #1:

Provide technical assistance to local Title V Grantees implementing toxic stress, ACEs, and resilience work in their communities.

 

Accomplishments – State level:

• Nine Title V grantees selected to work on ACEs, trauma and resilience during the grant period. Many of these grantees chose this priority in previous years, so had planned to build on ongoing work. Strategies selected address: community outreach and education on NEAR science (neurobiology, epigenetics, ACEs and resilience), developing trauma-informed workplace and workforce, and supporting programs that strengthen protective factors for individuals and families.
• Calls were held with local grantees to develop their local plans and assess potential needs. The ACEs/Toxic stress priority lead talked with local grantees to determine their capacity for ongoing technical assistance within the context of the ongoing COVID-19 pandemic. Unfortunately, as will be detailed throughout the report, many local grantees expressed concern about their limited capacity to engage in work outside of their community’s immediate COVID-19 response.

 

Challenges/emerging issues:

The COVID-19 pandemic made completion of our planned activities very difficult. Many local Title V staff were pulled into their community COVID-19 responses and traditional public health programs were temporarily “paused” or scaled back during the grant year. Local Title V staff lacked the capacity to participate in regular technical assistance for Title V activities.

 

Strategy #2:

Promote family friendly policies that decrease stress and adversity for all parents, increase economic stability and/or promote health.

 

Accomplishments – State level:

• MCH staff continued to participate in the development of an OHA trauma-informed policy alongside representatives from divisions across the agency. This trauma-informed policy workgroup finalized the agency policy in December 2020 and began to develop a process to implement the policy. New agency Executive Sponsors were identified, and participants were recruited to form a new trauma-informed policy implementation workgroup during summer 2021.
• The Title V program continued to strengthen partnerships with several organizations working to reduce parental stress and promote family friendly policies, including Family Forward, an organization whose mission is to support policy change which decreases stress for women in their roles as caregivers. 
• MCH representatives participated in a cross-agency workgroup focused on Earned Income Tax Credit (EITC) and the enhanced child tax credit uptake. Partners in this workgroup include the Oregon Department of Human Services, Department of Revenue, Department of Consumer and Business Services, and local nonprofit agencies.
• Data from the Adverse Childhood Experiences (ACEs) module of Oregon’s Behavior Risk Factor Surveillance Survey (BRFSS) survey, and the Pregnancy Risk Assessment Monitoring System (PRAMS) and PRAMS follow-up surveys were provided to state and local partners to inform local and state policy work.
• Oregon’s Title V program supported the continued development and implementation of legislation and programming for Oregon’s Universally offered home visiting program.

 

Accomplishments – Local level:

• Benton County supported two MCH RNs to complete the training “Promoting Maternal Mental Health During Pregnancy from Parent Child Relationship Program.” One RN was able to complete an additional training “Developing Trauma Informed Clinics and Health Organizations.”

 

Challenges/emerging issues:

• The COVID-19 pandemic presents both challenges and opportunities related to the establishment of policies to prevent and/or mediate ACEs and trauma for children and families. The increased stresses on parents and families – especially in systemically oppressed communities – are exacerbating both need and disparities. Although some short-term funding and policies to support families are being implemented, there are disparities in the reach and implementation of those policies, and the longer-term policy solutions remain in doubt.
• All local grantees expressed challenges related to the COVID-19 pandemic. Many Title V grantee staff were diverted to their local COVID-19 response or experienced staff turnover. Although previous training and professional development in trauma-informed care principles helped Title V grantees to address client and staff trauma and toxic stress, some grantees reported that no one was fully prepared to meet the challenges of the complex trauma brought on by COVID-19 and regional wildfires during this grant cycle. This continues to be a challenge that Title V grantees will work to address in the future.

 

Toxic stress/Trauma/ACEs/Resilience Strategy #3:

Provide outreach and education to increase understanding of, NEAR (neurobiology, epigenetics, ACEs, and resilience) science, and the impact of childhood adversity on lifelong health.

 

Accomplishments – State level:

• Information on toxic stress/trauma and its impact on lifelong health was provided to state and local partners as requested throughout the grant year.
• The MCH Section’s Health Equity workgroup convened meetings throughout the grant year to provide a trauma-informed space for MCH staff to come together and process the personal and professional impacts of COVID-19, wildfires and racial justice uprisings.

 

Accomplishments – Local level:

• Lane County was able to hold a series of 4 meetings to review NEAR toolkit in detail with MCH staff. These meetings were conducted in July 2021 when COVID-19 case rates were lower and MCH staff, including the MCH Nursing Supervisor, were able to return to their regular public health work from the COVID-19 response. The team was also able to set up Tableau for Title V indicators and expand the use of the dashboard for the nurses’ caseload. The grantee will continue working to chart NEAR-related issues and train staff on charting.
• Marion County reports that interest in ACEs/toxic stress has increased in their community during the COVID-19 pandemic and historic wildfires. Initial conversations were conducted during the grant period with partner agencies about potential opportunities for future collaboration.
• North Central Public Health District had planned to do intensive training for nurse home visiting staff on NEAR science. Instead, more scaled down resources were provided to all county public health staff to help them address stress and trauma, particularly during COVID-19 outbreaks. Some nurse home visiting services were able to be provided via telehealth.

 

Challenges/emerging issues:

• All local grantees expressed challenges related to the COVID-19 pandemic. Many Title V grantee staff were diverted to their local COVID-19 response or experienced staff turnover. Although previous training and professional development in trauma-informed care principles helped Title V grantees to address client and staff trauma and toxic stress, some grantees reported that no one was fully prepared to meet the challenges of the complex trauma brought on by COVID-19 and regional wildfires during this grant cycle. This continues to be a challenge that Title V grantees will work to address in the future.
• Marion County was unable to complete their planned work during the grant period due to the COVID-19 pandemic and local wildfire response. The grantee is aware that both events have and will continue to have major impacts on already systemically oppressed groups within the community. Future work in this area, including prevention strategies, will be critical in helping ameliorate the health impacts of these events.
• North Central Public Health District was largely unable to complete their planned work during the grant period due to the COVID-19 pandemic. All nursing staff and support staff diverted most of their time to COVID-19 response and mass vaccination clinics.

 

Toxic stress/Trauma/ACEs/Resilience Strategy #4:

Engage partners to build capacity for safe, connected, equitable and resilient communities.

 

Accomplishments – State level:

• State Title V staff provided ongoing support and leadership to a variety of internal, as well as cross-agency trauma efforts including the Public Health Division Community Engagement Community of Practice and Trauma-Informed Oregon’s Advisory Council.
• State Title V staff provided support and resources to local Title V grantees working to implement community partnerships and cross-system initiatives.
• The State Title V Program continued to fund an MCH information and referral line as well as two dedicated MCH specialists as part of Oregon’s 211info service. These services provide information and referral for a wide range of health, housing, childcare, and other human service needs statewide, as well as more in-depth resources and support to families with specific MCH needs spanning parenting, child health, etc.
• Title V funding also supported local Title V grantees in delivering MCH services including Oregon MothersCare and home visiting. These programs build safe and connected communities by identifying children and families who are experiencing stress and adversity and refer them to appropriate supports and care.

 

Accomplishments – Local level:

Marion County participated in two local Service Integration Teams and multiple neighborhood groups. The grantee provided a prevention lens as the groups worked through the collective trauma of COVID-19 and wildfires. The grantee provided expertise and resources related to ACEs and trauma. Marion County reports that these relationships and organizations were strengthened because of the county’s prominent role in the COVID-19 and wildfire response.

 

Challenges/emerging issues:

As with other areas of this work the COVID-19 pandemic created challenges, illuminated disparities, and also created opportunities. The diversion of MCH staff at both the state and local level to COVID-19 response work was a huge challenge, but at the same time, new relationships with community-based organizations and new systems for funding systemically oppressed communities around the state hold promise for this strategy in the coming years.

 

Toxic stress/Trauma/ACEs/Resilience Strategy #5:

Conduct assessment, surveillance, and epidemiological research. Use data and NEAR science to drive policy decisions. (State level only strategy)

 

Accomplishments – State level:

• Data from these surveys was analyzed and used in a variety of presentations throughout the grant year including presentations to the Oregon Legislature, Early Childhood partners, and Title V grantees.
• Parental stress questions from Oregon’s Pregnancy Risk Assessment Monitoring System (PRAMS) were analyzed.
• The Oregon subset of the National Survey of Children’s Health (NSCH) data on children’s exposure to ACEs for Oregon children was analyzed and information on flourishing and ACEs, as well as other children’s resiliency indicators, was disseminated to partners.
• Title V staff partnered with other state agencies to fund and implement a National Survey of Children’s Health oversample for Oregon, beginning in 2020.
• Analysis of data from the Behavioral Risk Factor Surveillance System was conducted to examine the association between ACEs and adult cognitive disability. Analysis was conducted in partnership with a CSTE/CDC Applied Epidemiology Fellow and the CDC State Assigned MCH Epidemiologist. A draft manuscript is currently going through state and CDC approval processes for submission to a peer reviewed journal.

 

Challenges/emerging issues:

Limitations in sample size, especially for the Oregon sub-sample of NSCH data – as well as constraints on available analyst time impose limits on what can be accomplished in this strategy area. The NSCH oversample will help to address some of the data limitations.

 

Toxic stress/Trauma/ACEs/Resilience Strategy #6:

Develop a trauma-informed workforce, workplaces, systems, and services.

 

Accomplishments – State level:

• The integrated state MCH trauma-informed care and health equity work group continued development of internal systems and policies to ensure that the links between toxic stress and adversity, and racism and health equity are recognized and interwoven throughout our work.
• Work on trauma-informed workplace systems and supports shifted with the pandemic to support for telework and COVID-19 related stressors on MCH staff and their families. These included ensuring that staff had flexible schedules, understood how to access emergency leave and childcare supports, and had ways to integrate self-care and wellness into their new work settings.

 

Accomplishments – Local level:

• Deschutes County trained all nurses on the Family Support Services (FSS) team on the Sanctuary Training Trauma-Informed Care Modules 5-10 remotely. Two staff attended monthly meetings with the TIC Core Team and Training group. These trainings provided a formalized way to educate staff on the importance of trauma and TIC in their work. Out of the training came opportunities to join the sanctuary workgroup and continue to work with the team on implementation of the work – and also individually take accountability for being more trauma-informed in the approach to each individual’s work. Refresher training was also offered in September 2021. The county reported that the shift to remote work actually improved attendance at these training opportunities. Attendees further reported an increased sense of emotional safety in the virtual environment.
• Washington County planned to build on previous work to increase awareness of ACEs/TIC among county staff and partners. Unfortunately, because of the COVID-19 pandemic, regular workgroup meetings of the coordinating committee were suspended for an extended period. The grantee spent time during the grant period developing a strategy to continue to engage staff in this work and bring their expertise to the current structure (internal MCH team).

 

Challenges/emerging issues:

• Challenges related to this strategy at both the state and local levels included the COVID-19 related changes in workplaces and all of the trauma-informed adjustments that those necessitated.  Additionally, it is an ongoing challenge to address the complexity of developing trauma-informed systems and services, which span both how our MCH systems treat employees and workforce, as well as how we address trauma and racism and their impacts on health.
• All local grantees expressed challenges related to the COVID-19 pandemic. Many Title V grantee staff were diverted to their local COVID-19 response or experienced staff turnover. Although previous training and professional development in trauma-informed care principles helped Title V grantees to address client and staff trauma and toxic stress, some grantees reported that no one was fully prepared to meet the challenges of the complex trauma brought on by COVID-19 and regional wildfires during this grant cycle. This continues to be a challenge that Title V grantees will work to address in the future.
• Deschutes County reported that supporting staff in the implementation of TIC concepts was challenging in the remote work environment.
• Washington County had to suspend ACEs/TIC workgroup meetings during the grant period due to the COVID-19 pandemic.

 

 

Toxic stress/Trauma/ACEs/Resilience Strategy #7:

Strengthen protective factors for individuals and families through support for programs that build parent capabilities, social emotional competence, supportive/nurturing relationships, and foster connection to community, culture, and spirituality.

 

Accomplishments – State level:

• The Title V lead coordinated a training in partnership with the Pacific Northwest-based Open Adoption & Family Services (OA&FS) on trauma-informed pregnancy options counseling and open adoption services in early fall 2021. Approximately 25 people attended, representing local Oregon MothersCare and home visiting programs. OA&FS also shared slides and presentation materials with local partners who were not able to join the webinar.
• State MCH Title V nursing staff supported implementation of nurse home visiting programs and systems across the state, including Babies First!, Family Connects Oregon, Nurse Family Partnership, and the partnership with OCCYHN’s CaCoon program.  This work involved supporting programs to shift their service delivery to telehealth and partnering with the Oregon Health Authority’s Senior Health Advisor team to provide guidance about how to prioritize equity and safety during the COVID-19 pandemic. This work was accomplished through collaboration with the MCH Section’s nurse team, as well as the MIECV team, and early childhood home visiting systems work groups.

 

Accomplishments – Local level:

• Harney County began training a nurse to become a home visitor in the CaCoon and Babies First! programs. The nurse completed training and conducted a few home visits in fall 2020.
• Jackson County was able to provide a small number of Babies First!, CaCoon and Nurse Family Partnership clients via Zoom or telehealth when possible. Many families served had been displaced by the historic Southern Oregon wildfires and were living in motels. Families were supplied with pack and plays because cribs were not available in temporary housing. The home visitors were also able to supply phones to some families who had been displaced by the fires.
• Washington County provided training for home visiting staff called “strategies for self-regulation as a component of compassion.” A second professional development training was completed for all staff, including Healthy Families, Nurse Family Partnership, Babies First!, CaCoon and Family Connects nurses called “Being Culturally Responsive and Promoting Racial Equity in our Work with Families.”
• Yamhill County reported a stronger retention of home visiting clients than expected, despite the COVID-19 pandemic. Nurses adapted practices to meet client needs, which were very different from previous years. All visits were provided virtually during the year. A partnership with the Early Learning Hub facilitated a change in the mental health support provided through Mothers and Babies program to a virtual, one-on-one format. The grantee advocated for more fast-track housing vouchers slotted specifically for MCH population. The grantee partnered with the local housing authority to support clients through the application process and then vet applicants within Public Health and HHS so that good quality/qualified applications were sent to the housing authority. Nurses worked one-on-one with families to address bureaucratic barriers, such as missing birth certificates, so that applications could be successful. The grantee recognizes how challenging these systems are for families and have tailored their work to help buffer these systems/communication issues for families.

 

Challenges/emerging issues:

• All local grantees expressed challenges related to the COVID-19 pandemic. Many Title V grantee staff were diverted to their local COVID-19 response or experienced staff turnover. Although previous training and professional development in trauma-informed care principles helped Title V grantees to address client and staff trauma and toxic stress, some grantees reported that no one was fully prepared to meet the challenges of the complex trauma brought on by COVID-19 and regional wildfires during this grant cycle. This continues to be a challenge that Title V grantees will work to address in the future.
• Harney County reported that the nurse they had hired to support home visiting services quit in late 2020 and it took several months to refill the position. When another nurse was hired, she was pulled into the COVID-19 vaccination campaign and other COVID-19 community efforts. The grantee attempted to hire a nurse specifically for home visiting but did not receive any applicants for over a year. The program is currently on hold until the grantee has increased capacity.
• Jackson County reported a significant reduction in home visiting clients during the grant year because all MCH nurses were diverted to the local COVID-19 response. All home visits that were able to be completed were delivered via telehealth, except for some in-person visits to deliver supplies.
• Washington County reports that staff is in an “ongoing crisis mode” with the COVID-19 pandemic and other local emergencies. They need increased support, so county leadership has been working to share self-care options. Despite these efforts, staff report increasing burnout. Staff have continued to engage in reflective supervision and have built this practice into all teams as a standard practice.
• Yamhill County reports that different nurses have different levels of comfort with the housing component and how it integrates into nursing/home visiting practice. Poor communication between the housing authority, HHS and clients has also been challenging because all agencies have been overwhelmed by the COVID-19 pandemic. There is willingness and buy-in among leadership of these agencies, but access to the actual caseworkers who are delivering these services is limited.

 

Toxic Stress, Trauma, ACEs and Resilience: OCCYSHN Report

(10/2020 – 9/2021)

 

Strategy 1.1:

We will promote trauma-informed care for CYSHCN and their families by incorporating a family-informed, trauma-informed lens to our workforce development activities.

 

Activity 1.1.1. Develop OCCYSHN Internal Capacity

OCCYSHN staff took part in professional development activities related to family-informed, trauma-informed care. As we built internal capacity, we integrated our learning into our work with local public health authorities. For example, we hosted a community of practice on trauma-informed care for them. Additionally, we presented a didactic on trauma-informed care to ACCESS teams (Activity 3.2.1).

 

SPM ESM1.1:

The percentage of OCYSHN staff who complete at least one training about trauma-informed care.

Objective: By 2025, all OCCYSHN staff will complete at least one training about trauma-informed care.

Progress: At baseline (FY2020), 47% (8) of OCCYSHN’s 17 staff had participated in at least one training about trauma-informed care. As of June 15, 2022, 70% (14) of our 20 staff had participated in at least one.

 

Activity 1.1.2. Develop Expertise on Pediatric Medical Trauma and CYSHCN

Plans were developed to pursue research on the topic of pediatric medical trauma in the coming grant year. In preparation, OCCYSHN’s Family Involvement Program manager and an ORF2FHIC staff member were trained to use the OHSU library literature search service. ORF2FHIC disseminated (via newsletter, Facebook, and website) resources for families to help children manage anxiety about medical procedures. Examples include the Simply Sayin’ App, Autism Speaks’ Blood Draw Toolkit, and “Just for Me” (stories about COVID-19 vaccines). We established a folder in the OCCYSHN shared resource library to house articles and other materials on the subject of pediatric medical trauma. This resource library is available to all OCCYSHN staff.

 

Activity 1.1.3. Workforce Development

In collaborative OCCYSHN/OHA communities of practice, CaCoon home visitors shared strategies for mitigating pandemic-associated trauma for families of CYSHCN.

OCCYSHN shared trauma-informed resources internally and with LPHA partners. The data equity workgroup convened by CaCoon and Babies First! staff included efforts to ensure that data collection language was trauma-informed. We also started discussion about developing a cross-systems care coordination quality improvement tool, which will include strategies for trauma-informed care.

 

 

Culturally and Linguistically Responsive Services (CLAS): OHA MCAH Report

(October 2020 – September 2021)

 

State Performance Measure 2:

1. Percentage of children ages 0 - 17 years who have a healthcare provider who is sensitive to their family’s values and customs. Percentage of new mothers who have ever experienced discrimination while getting any type of health or medical care.

 

Trends in SPM Data:

SPM 2A. The 2019-2020 National Survey of Children’s Health reports that Oregon’s rates of doctors showing sensitivity to their culture and values is comparable to national rates. Latinx families in Oregon experience cultural responsiveness from their doctors at a lower rate than Latinx families nationally (OR- 61%, US 66.1%). Black communities in Oregon experience a higher rate of cultural sensitivity from doctors than the national average (OR 88.7%, US 71.3%). Data from the 2018-2019 report suggests that cultural responsiveness among medical providers has decreased over time.

 

SPM 2B. Oregon PRAMS data is the source for this measure. In 2017, 10.9% of families reported experiencing discrimination in a health care setting, and in 2018 and 2019, fewer families reported this experience (9.7% and 9.4%, respectively). Oregon PRAMS 2020 data reported a slightly higher rate of discrimination in a health care setting (9.9%). Although it increased slightly in 2020 there is still an overall downward trend since 2017, which suggests that these experiences are decreasing over time. This is the last year that this measure will be reported, as it has been discontinued for future grant years.

 

Culturally and Linguistically Responsive Services Strategy #1:

Develop and improve organizational policy, practices, and leadership to promote CLAS and health equity.

 

Accomplishments – State level:

• State MCAH provided technical assistance and support to local grantees when requested, but for the most part, this TA emphasized trauma-informed emotional support and resources for local leaders to help their staff manage their responses to being stretched too thin; attempting to fulfill grant obligations while also managing their local public health responses to the COVID-19 epidemic.
• State MCAH created a team for the next cycle called the Foundations of MCAH. This team combined the cross-cutting strategy work into foundational strategy areas to incorporate health equity, anti-racism and trauma-informed strategies across our state level work. This Foundations team consists of 5 Title V subject matter expert leads across 4 areas of work: Policy and Systems, Workforce Capacity and Effectiveness, Community, Individual and Family Capacity, and Assessment, Surveillance and Data.
• The Title V CLAS lead continued to participate in division wide efforts to improve policies and procedures to address systemic barriers to health equity. These efforts were focused on COVID-19 response, and several MCH staff provided support to statewide community engagement and equity teams tasked with reaching disproportionately impacted populations throughout the state. As the COVID-19 emergency response shifted into a recovery response, MCH Title V staff re-engaged with the broader Public Health Division Health Equity Workgroup to identify next steps for structuring equity work on the division level.
• The MCH Health Equity Workgroup continued to meet throughout the grant cycle and shifted focus to include everyone in MCH. The workgroup time became a place for MCH staff to come together and share progress and ideas on health equity strategies.
• Throughout this grant cycle, MCAH contracted with Engage to Change- an external contractor who focuses on organizational shifts towards implementing strategies to improve health equity. During this grant cycle, monthly meetings consisted of level setting and trust building among MCAH staff, and is continuing examining and breaking down barriers to systemic change. 
• The state MCAH efforts on improving our website information on health equity and anti-racism strategies are still in need of work. Since we have focused on a variety of other areas of our work, our website has taken a back seat and requires more work in our next grant cycle.

 

Accomplishments – Local level:

• Lincoln County hired a bilingual Community Health Worker to increased outreach efforts to women that speak Spanish and provided 356 interpretation services. They also contracted with a Mam speaking interpreter to provide 155 instances of linguistically appropriate services. Providing consistent language access increased engagement and trust with Spanish speaking and Guatemalan communities. Beyond interpretation services, their CHW provided over 250 additional case management services to the Guatemalan families.
• Coos County formed an internal equity committee to establish a set of equity hiring questions for use across the agency and they are currently working on an equity tool for reviewing policies and procedures across the agency. Coos County Health and Wellness (CHW) added 3 additional Spanish speaking employees during the reporting period and purchased 2-way radio interpretation devices for when bilingual staff are not available. In response to COVID-19, CHW formed a vaccine equity committee focusing on outreach to communities of color, with an emphasis on the Latinx community. CHW added a new position – Health Equity and Promotion Specialist - with funding from MCH Title V and Public Health Modernization. The work of this position will be focused on equity across CHW.
• Multnomah County continued work with Indigenous families through the Future Generations Collaborative (FGC), which centered traditional values and collaboration in the prevention of Fetal Alcohol Spectrum Disorder (FASD). Due to COVID-19, they added supports and technical assistance beyond the Department of Human Services to more direct client and case manager support. Multnomah County MCH has also continued to support the Multnomah County Maternal and Child Health Task Force to identify and address gaps in services to vulnerable families. Additionally, they have continued to provide tribal and urban education support for CHWs, case managers, home visitors and families impacted by FASD.

 

Challenges/emerging issues – State level:

• COVID-19 impacted, and continues to do so, the types of support and technical assistance local grantees needed from our state level staff.
• State level work on CLAS standards and health equity work didn’t stop during COVID-19, although it did look different. We worked on evaluating our efforts, including analyzing our progress thus far and what has worked well and what hasn’t. This analysis of our past efforts provided the opportunity to re-engage with our action plans and identify our next areas of work (including data and surveillance, and increasing our capacity in community engagement).

 

Challenges/emerging issues – Local level:

• Lincoln County: COVID-19 was the challenge! Teaching Perla virtually and then providing those services virtually or by phone!
• Coos County: Challenges include the varying comfort levels of staff that impact participation and progress in areas of CLAS and health equity. They will continue in the next cycle to support spaces for listening/understanding multiple points of view while moving this work forward.
• Multnomah: Although developing collaborative circles of care has been made more challenging without being able to be face to face frequently, providers and families are expressing appreciation for the virtual, phone, and physically distanced in person experiences they can have. Providers continue to seek technical assistance and problem solve with the FGC.

 

Culturally and Linguistically Responsive Services (CLAS): OCCYSHN Report

(10/2020 – 9/2021)

 

Strategy S2.1.

We will improve CYSHCN and their families’ access to culturally sensitive and responsive care through workforce development.

 

Activity 2.1.1. Workforce Development

Community health workers (CHWs) can provide care that is both culturally-sensitive and responsive. OCCYSHN developed a novel online course for CHWs: Supporting Families: Navigating Care and Services for Children with Special Health Needs (Activity 12.1). This course will increase the capacity of the CHW workforce serving families of CYSHCN, introducing principles and practices to improve the health and well-being of CYSHCN and their families.

 

CaCoon and OHA hosted two communities of practice to improve workforce knowledge about culturally sensitive and responsive care: a) Reproductive Health Equity and b) Support and Care Coordination for Gender Diverse Individuals. We also provided participants with linguistically appropriate resources via an online collaboration platform.

 

The data equity workgroup convened by CaCoon and Babies First! assessed and addressed the cultural appropriateness of the data collection tools used with families in these public health home visiting programs (Activity 11.4).

 

OCCYSHN held our annual regional meetings with LPHAs virtually. The Assessment and Evaluation unit presented its work on antiracism at these regional meetings, and led discussions with CaCoon home visitors.

 

OCCYSHN’s Systems and Workforce Development unit used Activate Care as a virtual care coordination platform for the PACCT Project (Activity 11.2). We communicated to Activate Care leadership specific changes that would improve the platform’s cultural sensitivity and responsiveness. We expanded OCCYSHN’s stock photography options with the Inclusive Stock Photography collection from the Adolescent Health Initiative. The photos reflect diverse depictions of gender identity, sexual orientation, race, ethnicity, religion, socio-economic status and ability.

 

SPM ESM2.1:

Culturally-specific community-based organizations reviewed our cross-systems care coordination (CSCC) strategies, and OCCYSHN modified strategies based on organization feedback (yes/no).

Objective: By 2025, we will have adapted or modified our CSCC on the basis of feedback from at least two culturally-specific community-based organizations.

Progress: This objective is still in progress. 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.

 

Activity 2.1.2. Promotion of Culturally Appropriate Health Care

OCCYSHN promoted culturally sensitive and responsive health care through workforce development support to LPHAs (Activities 11.1-11.4).

 

OCCYSHN’s Assessment and Evaluation Manager (Alison Martin, PhD) served as research mentor to Mr. Charles Smith, MSW, during his 2020-2021 Leadership Education in Neurodevelopmental and Related Disabilities (LEND) fellowship. Mr. Smith served as the Associate Project Director for the Sickle Cell Anemia Foundation of Oregon’s 2019-2020 participatory needs assessment (PNA) study contract with OCCYSHN. Mr. Smith proposed to Dr. Martin a project focused on identifying and promoting clinics that implemented culturally-responsive care practices. OCCYSHN incorporated this idea into its 2021-2025 five year plan. Mr. Smith’s LEND project sought to advance this Title V CYSHCN activity by conducting a literature search to identify clinic-level assessments of culturally responsive care. Few such assessments were found. Mr. Smith and Dr. Martin began outlining a scope of work to develop such an assessment in partnership with the Latino Community Association (OCCYSHN’s other PNA partner) and families and young adults with special health care needs who are members of Black and Latino communities.

 

Activity 2.1.3. Multicultural Organizations

The Oregon Family to Family Health Information Center (ORF2FHIC) expanded outreach to immigrant families of CYSHCN. We collaborated with two community-based organizations serving immigrants from Africa: The African Youth Community Organization and African Family Holistic Health Organization (Activity 11.5). We also served as a member of the Portland-based Refugee Emotional Support Task Force, where we offered CYSHCN-related information and resources to social workers and administrators who work with immigrant families.

 

ORF2FHIC contracted with the Immigrant and Refugee Community Organization, a local CBO, for interpretation services for family support phone lines. They primarily interpreted calls in Cantonese, Mandarin, and Vietnamese. We also re-established partnership with Unete, a farmworker advocacy program in Southern Oregon, to provide cultural broker services. They review ORF2FHIC materials for cultural appropriateness, and make recommendations for improvements. They also translate ORF2FHIC toolkits, training materials, and tip sheets.

 

ORF2FHIC collaborated with organizations and programs serving multicultural and culturally-specific families. These included the Sickle Cell Anemia Foundation of Oregon, Unete, Hands and Voices, Grandparents as Caregivers, and Lutheran Community Services Northwest. We reciprocally referred families and disseminated program resources and information. We developed a listserv to share information with 20 professionals serving Spanish-speaking families with limited English proficiency. Listserv members include bilingual staff at the Northwest Down Syndrome Association, Autism Society, Family and Community Together Oregon, and the Oregon Family Support Network.

 

ORF2FHIC supported a new F2FHIC in American Samoa with materials and suggestions for outreach and community-building. Their F2FHIC serves as a resource to us for supporting Samoan families with CYSHCN in Oregon. We provided Spanish-language materials to the Virginia Garcia Health Center. They provide health care to migrant and seasonal farm workers in Oregon, and we discussed co-sponsoring trainings there for families of CYSHCN.

 

OCCYSHN’s Assessment and Evaluation unit continued work with SCAFO and the Latino Community Association to disseminate findings from the 2020 Five Year Needs Assessment. We jointly presented findings at an OHSU Department of Pediatrics Grand Rounds, to educate health care professionals about racism experienced in the health care system by Black and Latino/x families of Oregon.

 

Activity 2.1.4. OCCYSHN Equity Workgroup

OCCYSHN's Equity Workgroup monitored progress on CLAS objectives, supported CLAS-related efforts across projects and programs, and ensured CLAS principles were integrated into OCCYSHN efforts.

 

According to the Racial Equity Stages developed by Dismantling Racism (www.dismantlingracism.org), internal growth is an important phase of racial equity practice that informs external efforts. In that spirit, the Equity Workgroup took steps to educate ourselves and examine the impacts of racism.

 

Each Equity Workgroup meeting included a discussion about research on equity-related subjects, including Asian-American stereotypes and the “model minority” myth, improving culturally appropriate care using a community-based participatory research approach, and physicians’ perceptions of people with disability and their health care. Discussion included how we could apply our learning to OCCYSHN’s work.

The Equity Workgroup presented to OCCYSHN staff quarterly on equity-related topics, and facilitated discussion following the presentations. One presentation introduced OHSU’s Inclusive Language Guide (an evolving document about appropriate terms related to sexual orientation, gender identity, race, and ethnicity). Another presentation covered data on the impacts of COVID-19 on CYSHCN of color.

 

The Equity Workgroup fine-tuned the process for tracking and supporting OCCYSHN’s CLAS activities to make it more efficient. OCCYSHN managers reviewed CLAS activities quarterly, and requested support from the workgroup as needed. Revisiting OCCYSHN’s CLAS goals and activities regularly helped ensure an ongoing focus on equity, and helped us integrate our learning into our work. Additionally, OCCYSHN implemented a policy requiring new hires and hiring managers to complete a training on unconscious bias.

 

Activity 2.1.5. Policy

OCCYSHN’s Director, in his role as Vice Chair for Community Health and Advocacy for OHSU’s Department of Pediatrics, supported institutional Equity, Diversity and Inclusion efforts. He secured funding to develop a national learning collaborative partnering children’s hospital-based injury prevention programs with community-based organizations serving pregnant and parenting women from minoritized communities. The focus is on integrating community health workers and nurse home visitors who are culturally and linguistically appropriate into promoting safe infant sleep. The Community Partnership Approaches for Safe Sleep (CPASS) program will be administered by the American Academy of Pediatrics.

 

OCCYSHN continued to partner with the Oregon Law Center, with a focus on addressing disparity in access to health and health care services and resources across the state. Much of the work focused on access to durable medical equipment, and addressing denials of service to those eligible for Medicaid or CHIP. We also continued our work with the All:Ready Network, whose mission is to transform early childhood by mitigating poverty, racism and ableism.

OCCYSHN, in partnership with Title V MCH, was instrumental in informing Oregon’s application for 1115 waiver to CMS. One of our prime foci was the issue of the disparate impact of Medicaid on minoritized communities.

 

Activity 2.1.6. Assessment

In addition to the assessment and evaluation efforts detailed in Activity 11.8, Dr. Martin sat on MCHB’s Six Core Outcomes Expert Steering Committee. She advocated for including measures of culturally responsive health care and discrimination experienced in health care. She also raised a concern about the ability of the National Survey of Children’s Health to describe racially and ethnically minoritized populations of CYSHCN, because of small sample sizes. Due to competing priorities, Dr. Martin was unable to work on assessing OCCYSHN activities, beyond the CoIIN activities (Activity 12.2), using the Racism as a Root Cause Framework (Malawa et al, 2021), but that remains an OCCYSHN goal for future block grant years.

 

 

Social Determinants of Health and Equity: OHA MCAH Report

(October 2020 – September 2021)

 

State Performance Measure 3:

1. The percentage of children in low-income households with a high housing cost burden
2. The percentage of children living in a household that received food or cash assistance
3. The percentage of households with children < 18 years of age experiencing food insecurity

 

Trends in SPM Data:

SPM 3A. Data from the American Community Survey show 68% of children in low-income households have a high housing cost burden. This data is reported for only one year, because it was a new SPM that was subsequently discontinued.

 

SPM 3B. The percentage of children living in a household that received food or cash assistance increased from 42.3 to 43.3% between 2019 and 2020. This reflects National Survey of Children’s Health data from 2018 and 2019. This high level of need among children is concerning and an indicator of the need to focus on basic needs of the MCH population, especially as we anticipate that these needs have only increased during the pandemic (data which is not yet reflected in these numbers).

 

SPM 3C. Data for the percent of households with children <18 years of age experiencing food insecurity was tracked during the past 5-year Title V cycle, and in the first year of this cycle. However, the USDA data from 2003-11 was expected to be updated periodically and this has not yet happened, making it impossible to track updates and trends. The SPM has been discontinued.

 

Social Determinants of Health and Equity Strategy #1:

By October 2020, determine state Title V staffing for and develop a cross-cutting Title V priority team to address upstream drivers of Maternal and child health, and link work across population domains and state priorities (SDOH-E, trauma and ACEs prevention, CLAS).  The team will research, develop, adapt or adopt an overarching theory of change for the work, in collaboration with the Injury Prevention and Women, Infants and Perinatal health teams.

 

Accomplishments:

• The MCAH Title V staff spent the Fall of 2020 in a series of retreats focused on developing a new structure for the Title V program’s 2021-2025 cycle priorities.
  • Key goals of the re-designed structure were to de-silo our upstream SDOH-E, trauma and ACEs Prevention and CLAS work in recognition of the inherently inter-connected nature of these topics, as well as to facilitate integration of the SDOH-E, Trauma and ACEs prevention and CLAS work into the NPM work in the domains.
  • A decision was made to weave together implementation of the 3 upstream state priorities in a “Foundations of MCAH” priority that would focus work across the 4 key areas of: policy & systems; workforce; community, individual and family capacity; and assessment & evaluation.
  • The new operating structure also involved the creation of 3 cross-cutting team to further integrate Title V work across priorities. The teams are: Foundations of MCAH (SDOH-E,Trauma and ACEs prevention, and CLAS); Injury  Prevention (child injury prevention and bullying prevention), and Women Infant and Perinatal Health (well woman care and breastfeeding, and Oregon MothersCare)
• State level Title V leads were assigned to each of the 4 national priority areas. Since work on our 3 state specific priorities is integrated into the Foundations work as well as into each of the NPM priorities, the Foundations team jointly developed strategies in the areas of policy & systems; workforce; community, individual and family capacity; and assessment & evaluation. These strategies were then refined and cross-walked with the NPM priority strategies as staff retreats. Staff leads were assigned for each Foundations Strategy, with responsibility support implementation of the strategy across both state and local level work.
• A new theory of change document linking all Title V priorities to the Foundations work, showing the 4 major areas of work for all strategies, and high-level outcomes was developed to illustrate how the new structure with its focus on upstream determinants would work to move the needle on Title V priorities across the domains.

 

Challenges/emerging issues:

Limited staff capacity and the remote work environment necessitated by the ongoing COVID-19 Pandemic were the primary challenges to accomplishing this work. Team-based strategic thinking and planning work that would have normally been done in person had to be re-imagined and re-structured for the virtual environment. Some regular staff were on long-term COVID-19 assignments, so the work had to be done by those available.

 

Social Determinants of Health and Equity Strategy #2:

By December 2020, develop evidence-based/informed strategies and measures for SDOH-E – including strategies that address upstream drivers of maternal, child and adolescent health. Strategies will address both state and local levels work. Engage local Title V grantees and family and community representatives in the process.

 

Accomplishments:

• Evidence-informed strategies, measures, and suggested activities for SDOH-E were developed and integrated into the policy & systems; workforce; community, individual and family capacity; and assessment & evaluation areas of the Foundations of MCAH work during Oct – Dec 2020.
• The Foundations strategies were also cross-walked with work in the 4 NPM priority areas to ensure integration of the upstream Foundations of MCAH approach across all the Title V work.

 

Challenges/emerging issues:

The primary challenge to achieving this work was our very limited ability to engage local Title V grantees and other community members in the initial strategy development due to the COVID-19 pandemic. Local Public Health and tribes, as well as community-based organizations were extremely thin on capacity and focused on meeting the COVID-19 related needs of their communities. Guidance from State Public Health Leadership to all programs was to respect this and ask only essential engagement from our local partners. Therefore, initial strategies were developed by state Title V staff, and local grantees were engaged in modifying them and developing related activities during the TA process to introduce the new cycle Title V priorities and approaches.

 

Social Determinants of Health and Equity Strategy #3:

By February 2021, develop and adopt a logic model for the Title V’s SDOH-E work.

 

Accomplishments:

After surveying local grantees about the usefulness of a logic model for their work, it was decided that this strategy was not priority to implement. Grantees asked instead for a focus on workshops and technical assistance related to the new strategies, the upstream drivers of maternal and child health, and a the cross-cutting theory of change that supports the work. These TA sessions were delivered in February 2021 and followed up with technical assistance as described in strategy 5 below.

 

Challenges/emerging issues:

NA – see above

 

Social Determinants of Health and Equity Strategy #4:

By March 2021, begin implementation and tracking of Title V’s state level strategies for SDOH-E; collect/track outcomes through monitoring SPMs.

 

Accomplishments:

• Implementation and tracking of state level strategies for SDOH-E was initiated as soon as the Foundations strategies were finalized in December 2020.
• Initial state level Foundations strategy implementation focused on a combination of support and TA for local grantees as described in this report, and development of the partnerships and collaborations, as well as environmental scans, assessments and plan development needed to build the Title V work in this new Title V priority area.

 

Challenges/emerging issues:

Challenges to implementing this strategy are the same as those cited for Strategies 1 and 2 above. 

 

Social Determinants of Health and Equity Strategy #5:

By March 2021, provide technical assistance on new SDOH-E strategies and measures to Title V grantees on to inform local level priority selection, planning and implementation.

 

Accomplishments:

• Title V grantees were surveyed in December 2020 about their technical assistance needs related to implementation of the new 5-year Title V priorities, as well as their preferred methods for receiving TA and support for their Annual Plan development considering ongoing COVID-19 related pressures.
• Based on grantee feedback, a series of TA webinars was developed – focused on both the new upstream Foundations of MCAH approach, and the specifics of the priorities, strategies, measures, priority selection and annual plan development process.
• Title V TA webinars were held on the following dates and topics:
  • Overview webinar – Feb 18, 2021
  • Foundations of MCAH – Feb 22, 2021
  • Injury team webinar – Feb 26, 2021
  • Women’s and Infants team webinar – Feb 25, 2021
• In addition to the live TA webinars, the following TA materials and supports were provided to grantees to assist them in selection of the priorities for their Title V Annual plans:
  • Recordings of each webinar were made available to grantees on Oregon’s Title V MCAH website.
  • Strategy, activity, and measure tables were provided for each priority.
  • Links to additional resources for each priority were provided.
  • A planning worksheet was provided to help step them through the process of assessing community need, and selecting which priorities/strategies/activities to focus on.
  • Title V leads for each priority/strategy were available for one-on-one consultation.

 

Challenges/emerging issues:

Challenges to implementing this strategy are the same as those cited for Strategies 1 and 2 above. 

 

Social Determinants of Health and Equity Strategy #6:

April - June 2021, review and provide TA to local Title V Grantees on implementing SDOH-E in their annual plans for July 2021– June 2022.

 

Accomplishments:

• State Title V staff assisted grantees with individual plan development and submission through one-on-one Zoom calls conducted during March and April 2021.
• State Title V staff reviewed all local grantee annual plans during May and June 2021, and proved a TA call for each grantee, as well as written feedback on each of their plans’ priorities and strategies.
• Ongoing TA for plan implementation was provided to all grantees as needed/requested to assist in implementation of the new priority work beginning July 1, 2021.

 

Challenges/emerging issues:

Challenges to implementing this strategy are the same as those cited for Strategies 1 and 2 above. 

 

Social Determinants of Health and Equity Strategy #7:

July 1, 2021 through September 30, 2021- Title V grantees will implement local level strategies and collect/track outcomes.

 

Accomplishments:

• Work on SDOH-E is woven into the new MCAH Title V Foundations strategies as described above.
• In their FY 2022 plans (July 1, 2021-June 30, 2022), local Title V grantees selected to work on a variety of Foundations of MCAH strategies across all 4 focus areas as follows: Policy & Systems (14 grantees dedicating $264,562); Workforce (9 grantees dedicating $199,314); Community, individual and family capacity (9 grantees/$522,641); and Assessment and Evaluation (3 grantees/$30,051). 
• Implementation of this work began July 1, 2021 and will continue through June 20, 2022. Grantees will report on this work in their MCAH Annual Title V reports due in September 2022.

 

Challenges/emerging issues:

Challenges to implementing this strategy are the same as those cited for Strategies 1 and 2 above. 

 

Social Determinants of Health and Equity: OCCYSHN Report

(10/2020 – 9/2021)

 

Strategy S3.1:

We will increase access to care and supports by investigating barriers that inhibit CYSHCN and their families’ timely access, and we will develop family-informed activities to reduce or eliminate the barriers.

 

Utilizing an equity lens, we will work with our state and county partners to identify systems-level disparities. We will leverage our partnerships with local public health authorities, OHA and other state-level systems to collaboratively develop and implement interventions that mitigate those inequities.

 

Activity 3.1.1. Barriers to Receipt of Care

OCCYSHN engaged in several activities to address barriers to the receipt of care for CYSHCN. Medicaid redetermination is an exceptionally burdensome process for families of CYSHCN, requiring that they fill out a complex, 40-page form. ORF2FHIC staff presented the CYSHCN family experience to Oregon Health Plan Ombudsperson staff. OCCYSHN’s Director led the development of a Developmental Pediatrics Collaborative, with leadership of the Portland area Children’s Health Alliance (Activity 3.1.2). The collaborative seeks to reduce family wait times for autism evaluations provided by Portland metro-area health systems, and includes a Systems and Workforce Development Implementation Specialist. Lastly, we made progress toward our ESM as described below.

 

SPM ESM3.1:

We will complete root cause analyses for (a) DME by December 2021, (b) Autism Evaluation by June 2022, and (c) Respite care by June 2023 (yes/no).

Objective: By 2025, we will have completed root cause analyses of the barriers that inhibit CYSHCN and their families from timely access to DME, autism evaluation, and respite care.

Progress: OCCYSHN’s Assessment and Evaluation Unit will present our DME root cause analysis to OCCYSHN’s leadership team by September 2022, and we began a respite care root cause analysis. The Developmental Pediatrics Collaborative continued work on streamlining autism evaluation screenings by addressing institutional barriers.

 

Activity 3.1.2. Systems and Policy

OCCYSHN’s Director led the establishment of a Medical Legal Partnership (MLP) in OHSU’s neonatal intensive care unit (NICU), the first MLP in the nation focused on serving infants and families from the prenatal to the postnatal period. The MLP instituted universal screening for social determinants/impactors of health for caregivers of all infants admitted to the NICU. Social workers review all screens, identify those in need of assistance, and meet regularly with MLP staff (two physician champions and two MLP attorneys) to identify clients. Because poverty is the leading risk factor for premature birth, patients often face issues with housing, employment, insurance, immigration status and domestic violence. During this reporting period, the MLP expanded services to include Maternal Fetal Medicine, which serves mothers whose pregnancy is complicated by a significant health condition of their fetus. Working with this population will allow the MLP to address issues prenatally, moving farther upstream to prevent toxic stress and potential adverse childhood events.

 

OCCYSHN continued to partner with the Oregon Law Center (OLC), a non-profit legal aid agency with a focus on addressing systems-level issues impacting children and families. Our common focus for this period was Early and Periodic Screening, Diagnostics and Treatment, in light of Oregon’s waiver of that component of Medicaid, and the consequent rationing of healthcare to vulnerable populations. OCCYSHN convened regular meetings between the MLP and OLC to ensure work was aligned. Since the MLP work is focused on the interface of families and the health care system, and OLC works further upstream and at a broader systems level, we anticipate that their work will support synergistic approaches to mitigating social determinants of health for CYSHCN.

 

Activity 3.1.3. Strengthen and Leverage Existing Relationships

OCCYSHN collaborated with agencies and organizations across sectors to address systems-level issues affecting CYSHCN and their families. We worked with CCOs to address payment and coverage issues. In 2021, OCCYSHN’s Director and staff brought together three major health systems that provide developmental/behavioral pediatric services, to begin coordinating and streamlining the referral and diagnostic process for children with developmental concerns, including autism (Activity 3.1.1). This represented the first time that these three systems were at the table together. OCCYSHN’s Director continued to serve on the state’s Patient-Centered Primary Care Home advisory committee, and was successful in elevating issues specific to pediatric medical homes. OCCYSHN partnered with Title V MCH as they worked with state Medicaid leaders to address disparities and inequities that impact children. This included our unique 1115 Waiver that allows Oregon to establish a prioritized list of covered services and eliminates some requirements of Early Periodic Screening Diagnosis and Treatment (EPSDT). We worked with health care providers and LPHAs to enhance the quality of pediatric medical homes, and with programs that train health and service professionals to ensure a sustainable workforce.

 

Strategy S3.2:

OCCYSHN will increase access to community-based autism diagnostic services through implementation of community-based autism evaluation teams.

 

Activity 3.2.1. Assuring Comprehensive Care through Enhanced Service Systems (ACCESS)

OCCYSHN established eight ACCESS teams in Oregon from 2013-2016, with a HRSA grant. The teams perform community-based autism evaluations for children up to age five, provide a medical diagnosis, and establish educational eligibility for autism services. ACCESS teams reduce wait times for evaluation, decrease the need for families to travel to tertiary care centers, and connect children and families to services earlier.

 

The ACCESS planning team met regularly during this reporting period, to ensure that teams continued to develop in alignment with project goals. Seven teams provided evaluations, an increase of one team from the previous reporting period. OCCYSHN supported teams with a) increased dedicated OCCYSHN FTE; b) professional development opportunities; c) technical assistance site visits; and) financial support. OCCYSHN provided virtual support for existing ACCESS teams and other interested providers. The newest team is in Tillamook. OCCYSHN also helped providers in Bend and Clatsop who sought guidance on establishing collaborations between health and education professionals in their areas.

 

OCCYSHN trained thirteen medical providers and clinicians to use the STAT autism evaluation tool, including a new provider who joined an existing ACCESS team, and multiple providers in the Bend area. This aligns with our goal to increase the capacity of health care providers to evaluate children (to age 5) for autism.

 

OCCYSHN formed an ACCESS provider special interest group. The group, facilitated by the ACCESS Project’s medical director, met to discuss successes, challenges, and lessons learned from their autism evaluation experiences. The group provided mentorship and technical assistance to new ACCESS providers.

 

SPM ESM3.2: Change in number of teams over time.

Objective: By 2025, we will expand the number of Autism Evaluation Teams by 5%.

Progress: During FY20, we had six Autism Evaluation Teams operating in Oregon. We added one team during FY22, which represents an increase of 17%.

 

Activity 3.2.2. ACCESS Family Involvement

The Family Involvement Program (FIP) manager participated in ACCESS leadership meetings and ECHO sessions. She shared her experience as the parent of a child with ASD. She also had time on each agenda to disseminate family and community resources. She trained 25 members of the Northwest Regional Education Service District autism team on accessing resources for family members of CYSHCN, and on using the Oregon Family to Family Health Information Center. She met individually with Parent Partners (family members of children with ASD who sit on ACCESS teams) from three ACCESS teams. She also provided technical assistance to team leaders on recruiting, hiring, and using Parent Partners in their ACCESS work.

 

The FIP manager worked closely with Dr. Lark Huang-Storms, the ACCESS Project’s medical director, to draft a toolkit for parents about the intricacies of ASD evaluation in Oregon. This toolkit will help families understand the differences between medical and educational autism evaluations.

 

Activity 3.2.3. ACCESS Equity

Because racism and other forms of discrimination affect the health of Oregon CYSHCN, the ACCESS program prioritized access, equity, and inclusion in efforts to improve access to community-based autism evaluation for CYSHCN. ACCESS addresses equity by improving access to health care for rural CYSHCN.

 

An OCCYSHN staff member attended the ECHO Immersion Training at the University of New Mexico. OCCYSHN used the ECHO model to provide a ten-month case-based learning collaborative for ACCESS participants. ECHO session topics included trauma and IDD, promoting equity for LGBTQIA+ youth with autism, and materials for families with limited English proficiency.

 

Activity 3.2.4. Systems and Policy

The ACCESS Project disseminated materials to broaden the project’s reach by expanding the number of teams and aligning with other systems of care. We promoted care coordination and integration for CYSHCN. We continued our advocacy for a coordinated and unified statewide process for autism diagnosis and eligibility. We identified the need for dissemination products teams could use to raise awareness of their work in the community, and began strategizing about what products are needed and how to develop them.

 

OCCYSHN’s Director led the formation of a Developmental Pediatrics Access Collaborative to help address the shortage of diagnostic evaluation for autism in Oregon, as noted above (Activity 3.1.2).

 

Strategy S3.3:

We will improve agencies’ knowledge of and ability to respond to CYSHCN and their families during an emergency or disaster response.

 

Activity 3.3.1. Assess Emergency Preparedness

OCCYSHN worked with local public health authorities to address gaps in emergency preparedness for families with CYSHCN. We contributed our expertise about CYSHCN to emergency planning efforts.

 

To better understand the needs of CYSHCN during an emergency, Oregon Family to Family Health Information Center (ORF2FHIC) and OCCYSHN conducted a virtual listening session with eight families of CYSHCN from across Oregon. We recruited people whose children are medically complex, and/or experience communication challenges. Using a trauma-informed approach, we discussed scenarios in which families might be required to evacuate their homes (like wildfire or extreme weather) and scenarios in which they would need to shelter in place (like an earthquake). We sought suggestions for systems-level improvements, so that we might use family wisdom to inform policy efforts. With learnings from this listening session, we worked with the Oregon Health Authority’s Medical Surge Planner, sharing family experiences of gaps and barriers, and offering recommendations. Family members who participated received a stipend and an Oregon-specific emergency preparedness resource guide to thank them for their advocacy and expertise.

 

ORF2FHIC made available upon request hard copies of the Oregon Office on Disability and Health’s emergency preparedness publication. We featured family-centered emergency preparedness resources on our website, and we made regular ORF2FHIC Facebook posts on the subject of emergency preparedness.

 

SPM ESM3.3:

Number of hospital, county, and regional emergency preparedness plans that integrate the needs of CYSHCN and their families (yes/no).

Objective: By 2025, five hospital, county, or regional emergency preparedness plans, which previously did not integrate the needs of CYSHCN and their families, will do so.

Progress: At FY20 baseline, we had no knowledge of any hospital, county, or regional emergency preparedness plans that integrated the needs of CYSHCN and their families. COVID-19 limited our ability to collaborate with local partners to address emergency planning during FY21 and FY22. We may need to retire this SPM because it is infeasible. We do not have access to hospital or regional plans to potentially influence. After exploring county plans we have realized that many of them are similar to each other, following a template that does not leave room for community-specific planning. We do not anticipate any change at the LPHA-level until there is leadership buy-in.