Oregon’s Title V needs assessment synthesized information about MCH population needs relative to the 15 national priorities areas, current state Title V priorities, and emerging Oregon MCH priorities.

 

Goals, framework and methodology

The goals of Oregon’s MCAH Title V Needs Assessment are to: better understand the health status and needs of Oregon’s women, infants, children and youth, including those with special health care needs, and their families; engage stakeholders, partners, and communities in discussion about Oregon’s Title V MCAH work, and its alignment with key MCAH system changes and opportunities; meet the Federal Title V requirement to conduct a needs assessment of the MCAH population every five years; and use the results of that assessment to determine priorities for the state’s Title V MCAH program. The framework of the needs assessment was determined by a set of research questions and guiding principles as outlined in Supporting Document 3.

 

Methodology: The needs assessment utilized mixed methods to gather information on the needs of women, children, infants and families in Oregon. These methods included:

1. Environmental scan of community assessments conducted across Oregon
2. Partner survey of 482 MCAH and CYSHCN partners
3. Community voices: A gathering of the voices of special populations of focus in partnership with community agencies
4. Analysis of health status data from a range of sources including vital statistics, Pregnancy Risk Assessment Monitoring System (PRAMS), PRAMS 2, Oregon Behavioral Risk Factor Surveillance System (BRFSS), Oregon Healthy Teens, and Medicaid.

 

(A graphic showing the structure of the needs assessment methodology and process is included in Supporting Document 3.)

 

 

Stakeholder involvement

Families, youth, and partners were engaged during the Title V Needs Assessment through the environmental scan, the partner survey, the community voices project, and a survey of school nurses.

 

Forty-one community assessments conducted in Oregon during the past five years were analyzed to ensure that efforts already conducted by communities were honored and not duplicated. Assessments from each county within the state were included, along with special population assessments conducted by community agencies. This analysis provided not only a ranking of national and state priority areas but allowed for community specific needs and emerging needs to be identified.

 

Respondents to the online partner survey included but were not limited to stakeholders from coordinated care organizations, hospitals, health clinics, early learning hubs, school districts, schools, colleges, and community agencies. These partners provided feedback on the importance of each priority area in terms of impact, equity, and impact of resource allocation, in addition to identifying emerging needs and systems issues. Responses were received from partners whose organizations worked with special populations of focus, including African American/Black, American Indian/Alaska Native, Asian, Native Hawaiian/Pacific Islander, Hispanic/Latinx, and immigrant communities, as well as individuals with disabilities. Partner survey questions are included in Supporting Document 3.

 

The community voices project allowed for the needs of six special populations of focus to be explored. These special populations included African American/Black families, Hispanic/Latinx families, rural families, homeless families, immigrant and refugee families, and LGBTQ+ youth, with a special focus on transgender youth. Mini grants were awarded to community agencies to collect the data, and each agency was supported in determining their own methods of data collection, that were the most suitable and culturally responsive. Methods utilized by the grantees included focus groups, listening sessions, Charlas (a dialogue), written surveys, and semi-structured in-person or phone interviews. The use of mini grants to agencies with connections to specific communities allowed perspectives to be collected that would not otherwise have been accessible. The RFP for the community voices mini grants is included in Supporting Document 3.

 

The Adolescent and School Health (ASH) section completed a survey of school nurses. ASH collaborated with Jaime Smith, the School Health Services Coordinator at Multnomah Education Service District (MESD) and OCCYSHN’s Assessment and Evaluation Manager to collect data from school nurses across the state. The survey sought to collect data describing school nurses’ experiences working with students who have Individualized Education Plans (IEP). ASH administered the questionnaire electronically; Mr. Smith helped disseminate it to all MESD nurses and others across the state.

 

Quantitative and qualitative methods

MCAH Data Collection

Quantitative methods were used to assess strengths and needs of each population domain, MCH capacity, and partnerships/collaboration. These included analysis of health status and survey data, which were synthesized along with qualitative findings into data tools. For each tool, we analyzed data for each national, state and emerging priority area. Our analysis included comparing Oregon to the US, disparities among racial and ethnic groups, and trends over time. We also analyzed the results of the partner survey and the community voices project to compare the level of need in different areas of concern.

 

Qualitative methods were used for the environmental scan, to code the open-ended results from the partner survey, and to analyze the results of the community voices project. NVIVO qualitative analysis software was used to code mentioned of need from each of these sources into a comprehensive list of maternal and child health topics.

 

OCCYSHN Data Collections

In addition to the data collection methods that we collaborated with PHD to implement, OCCYSHN Assessment and Evaluation (A&E) staff sought to more specifically understand the needs of Oregon CYSHCN and their families, including access to care and care coordination, and experience with transition to adult health care. We used a descriptive design that incorporated both quantitative and qualitative data collection methods to answer these questions. Our use of participatory needs assessment (PNA) to understand the needs of two CYSHCN Communities of Color is particularly noteworthy. A description of our methods follows.

Quantitative Data Collection and Analysis Methods

OCCYSHN’s A&E staff relied primarily on the National Survey of Children’s Health results. We extracted previously tabulated results from CAHMI’s Data Resource Center (www.childhealthdata.org) and conducted our own analyses using the publicly available data file. We primarily used the 2016-2017 combined data file, but considered results from single years when Oregon state CYSHCN results were unavailable. A&E also included relevant quantitative results from the most recent National Core Indicator survey for Oregon, results from Oregon’s Department of Education, and findings from several recent OHA Office of Health Analytics and Oregon Office of Rural Health workforce needs assessment reports.

Qualitative Data Collection and Analysis Methods

The National Survey of Children’s Health provides a wealth of information but results that generalize to CYSHCN remain inadequate, particularly for CYSHCN of color. For example, we lack an estimate of the percent of Oregon CYSHCN who are Black. During our 2015 needs assessment, we received tremendous response to our family and youth surveys, but they did not well describe the experiences of families of CYSHCN of color. We also wanted to work directly with community-based organizations (CBO) to collect data (versus contracting with an external research firm) to ensure that funding went directly into the community and allow OCCYSHN to develop relationships with CBOs working in Communities of Color. Therefore, we sought to test a PNA approach to better understand the needs of CYSHCN who are members of Communities of Color and their families.

We first released a Request for Information (RFI) to obtain feedback from culturally-specific CBOs about our project proposal. We obtained input from an ORF2FHIC Parent Partner who previously worked for a culturally-specific CBO; we asked for his reactions had he seen the request come across his desk as his previous job. His insight was invaluable. We incorporated the RFI feedback we received into a Request for Proposal (RFP), which we then released only to CBOs who responded to the RFI. We awarded contracts to the Latino Community Association (LCA) and the Sickle Cell Anemia Foundation of Oregon (SCAFO). OCCYSHN partnered with LCA and SCAFO to develop culturally responsive data collection methods in their respective communities, which entailed both CBOs completing Institutional Review Board (IRB) training and participating in the development of the IRB protocol. LCA and SCAFO conducted 6 and 12 focus groups, respectively, in their communities, managed the transcription of their recordings, and participated in the analysis and dissemination of findings.

We also invited 43 stakeholders (ORF2F Parent Partners, CMC CoIIN Family Representatives, SCAFO and LCA team members, LPHA staff) to provide us input on our priority selection; 70% of stakeholders responded, and 70% of LPHA staff responded. A complete discussion of our methods and our timeline – including our approach for obtaining stakeholder feedback on priority selection – appears in our full needs assessment report (see Supporting Document 2).

 

Data sources

Data sources included the US Census, vital statistics, survey data including the Pregnancy Risk Assessment Monitoring System, the Behavioral Risk Factor Surveillance System, the National Survey of Children’s Health, the Youth Risk Behavior Surveillance System/Oregon Healthy Teens, Oregon’s Smile Survey, and the National Immunization Survey, as well as Oregon hospitalization data. Other sources included 41 community assessments utilized during the environmental scan, partner survey data, and reports from the community voices project.

 

 

Interface between collection of data, finalization of priority needs and development of State’s Action Plan

Stakeholders were presented with the findings of the needs assessment using an online platform, then asked to make recommendations for Oregon’s priority needs. State Title V staff then met for a day long retreat to consider these recommendations, and to finalize selection of Oregon’s priority needs.  The final selected priorities for Title V focus were used to create the state’s Action Plan.

 

 

Detailed results are available in the form of data tools at: https://www.oregon.gov/oha/PH/HEALTHYPEOPLEFAMILIES/DATAREPORTS/MCHTITLEV/Documents/2020%20Title%20V%20Data%20Tools%20Book%20Final.pdf

Samples of these data tools can be found in Supporting Document 3.

 

Women’s/Maternal Health

Strengths and Needs

Social determinants of health (SDOH) are a key issue of concern for this population. In Oregon, racial and ethnic disparities are evident in SDOH such as income and housing, e.g. the percent of female headed households with children under five, who are in poverty and pay >30% of their income on rent. Maternal mortality is also an issue of concern in Oregon, and the state has recently established a maternal mortality review committee to investigate the cause of the rising rates and increased disparities.

 

Successes, challenges and gaps

Well woman care

Women in Oregon consistently have lower rates of well woman care compared to national rates. Barriers to care reported included health care provider and staff attitudes, distrust of health care providers/fear of practices, preventive care not being a priority, lack of culturally appropriate care, discomfort with pelvic examinations, transportation issues and lack of childcare.

 

Low risk cesarean

Rates of low risk cesarean deliveries are consistently lower in Oregon than nationally, although there are evident racial/ethnic disparities. Rates in Oregon area similar in rural and urban areas.

 

Oral health during pregnancy

More women in Oregon receive a dental visit during pregnancy than nationally, although there are stark racial/ethnic disparities in these rates. Oregon ranks 48th nationally for optimally-fluoridated public water systems; only 22% of systems have fluoridated water.

 

Smoking during pregnancy

The rate of women who smoke during pregnancy is higher in Oregon than nationally, although this rate has been decreasing steadily since 2014. There are also large racial/ethnic disparities in smoking rates during pregnancy in Oregon. American Indians, people with household incomes under $15,000, people on Medicaid, and those with no high-school diploma are significantly more likely to smoke in Oregon.

 

Current efforts and needed strategies

Well woman care

Current efforts include Maternal Mortality and Morbidity Review Committee, adoption of a postpartum care incentive metric for Coordinate Care Organizations, and implementation of the Reproductive Health Equity Act. Well woman care was ranked highest among the national priorities in this domain in the environmental scan, partner survey, and community voices project.

 

Low risk cesarean

The Oregon Perinatal Collaborative has succeeded in implementing a “hard stop” policy to end

elective deliveries prior to 39 weeks. Policy and programmatic supports are in place to increase the use of doulas in Oregon as a strategy to decrease cesarean rates. Black families reported that there is a high rate of cesarean delivery in their communities, due to misconceptions about this route of delivery, and due to doctors not giving them other options.

 

Oral health during pregnancy

Oregon builds partnerships to support the integration of oral health in Coordinated Care Organizations (CCOs). Latinx and immigrant/refugee families reported that oral health is a problem in their communities because of health care coverage for adults not including dental care. Rural families reported a lack of dental providers and affordable dental care as barriers to women receiving necessary oral health care.

 

Smoking during pregnancy

Through the Oregon Mothers Care Program, pregnant women who smoke receive interventions and referral to the Oregon Quitline. Oregon’s CCOs are monetarily incentivized to reduce cigarette smoking among their members. Rural families reported that smoking during pregnancy is prevalent in their communities.

 

 

Perinatal/Infant Health

Strengths and Needs

While the infant mortality rate in Oregon is lower than the national rate, racial/ethnic disparities persist in Oregon in this rate and in other perinatal outcomes, such as adverse experiences and toxic stress during pregnancy and infancy. Additionally, lack of access to high quality affordable childcare impacts a family’s economic security, with many families with young children living in childcare deserts.

 

Successes, challenges and gaps

Breastfeeding

Oregon has breastfeeding initiation rates higher than the Healthy People 2020 target of 82%. Both Oregon and national rates fall short of medical recommendations that children be exclusively breastfed until 6 months of age. Disparity exists for exclusive breastfeeding for six months with lower rates among Black, Asian, and Hispanic Oregonians.

 

Safe sleep

A higher percentage of caregivers report putting their infants to sleep on their backs in Oregon than nationally, however, the rate of SIDs deaths in Oregon is consistently higher. Oregon’s statewide Child Fatality Review team reviews infant deaths and provides a forum for prevention discussions. The Early Learning Division recently changed its childcare rules to promote safe sleep practices.

 

Current efforts and needed strategies

Breastfeeding

Oregon has laws and policies in place to protect and support breastfeeding, including 12 weeks of paid leave. Oregon has licensure of IBCLCs which provides a mechanism for payment of medical lactation management. Black families reported needing more culturally competent care and support in their communities to support breastfeeding, including support for return to work. Immigrant/refugee families reported needing more workplace breastfeeding support.

 

Safe sleep

MCAH developed and shared safe sleep educational materials with public health programs as well as other partners. Oregon’s MIECHV program conducted a statewide CQI project on its efforts to reduce rates of sudden unexpected infant death (SUID) through safe infant sleep practices. DHS Child Welfare is interested in partnering with the Oregon Health Authority to train Child Welfare workers in safe sleep practices.

 

Child Health

Strengths and Needs

Early childhood disparities persist in multiple areas of health and well-being, including infant and maternal mortality, physical and oral health, and exposure to ACEs, trauma and toxic stress. CYSHCN and their families face significant barriers in accessing health care and other supportive services. More than one in five children in rural Oregon live in poverty, and children of color are disproportionately represented among young children in poverty.

 

Successes, challenges and gaps

Developmental screening

The rate of developmental screening is higher in Oregon than nationally. In Oregon, developmental screening is a CCO incentive metric. In 2018, 72.4% of children under three on Medicaid were developmentally screened. Work to improve developmental screening rates has been a focus of Maternal and Child health home visiting programs, and other Oregon partners.

 

Injury

Unintentional injury is the leading cause of death for children ages 1 through 11. Legislative successes include universally offered home visiting, easier ways to get rid of excess pharmaceuticals to prevent accidental poisonings, and a requirement for school districts to develop plans to prevent youth suicide. MCAH collaborated with Oregon Safe Kids to support state and local injury prevention through analysis and interpretation of child injury and death data.

 

Physical activity

While more 6-11 year-olds were physically active at least 60 minutes a day in Oregon than nationally, the proportion of schools that provided the required number of minutes of physical education instruction for the entire year to all students was only 7% for schools with K-5 grades and only 26% for schools with 6-8 grades during the 2015-16 school year. Legislative successes include the Student Success Act and Keep Oregon Moving.

 

Oral health

While more 1-17 year old children have had a preventative dental visit in the last year in Oregon than nationally, half of 6-9 year old children have had a cavity. Statewide, cavity rates are higher in southeastern Oregon and northeastern Oregon. There are racial/ethnic disparities in the percentage of 6-9 year old children with cavities in Oregon. Rural families reported a lack of dental providers and affordable dental care as barriers to children receiving necessary oral health care.

 

Exposure to secondhand smoke

While there is no significant difference in the percent of 0-17 year old children who live with someone who smokes in Oregon vs. nationally, there are disparities in this measure, between racial/ethnic groups, and children with and without special healthcare needs. Successes include a ban on smoking on the premises of licensed childcare centersand in motor vehicles with a child under 18, as well as on sales to youth under 21. Taxes on tobacco products have also been raised in 2020.

 

Current efforts and needed strategies

Developmental screening

Oregon home visiting programs conduct developmental screenings for all participating infants starting around four months of age. Oregon MIECHV participated in a statewide project to improve developmental screening and referrals. CCO data show some communities continue to have lower screening rates. Black, Latinx, immigrant/refugee and rural families indicated that developmental screening was a high priority need in their communities.

 

Injury

Home visiting programs offer parent education and support, assessments of the home environment and connections to resources for families with infants and toddlers. MCAH partners with the Injury and Violence Prevention Program and DHS to staff the State Child Fatality Review Team. Challenges include limited services and programs for children, limited capacity and resources for child fatality review teams, and no designated funding to support prevention and health promotion in childcare settings.

 

Physical activity

Oregon participates in the Children’s Healthy Weight CoIIN, Blue Zones, OEA Choice Trust School Wellness grants, Fuel Up to Play 60 grants, Safe Routes to School, and Physical Education Expansion K-8 grants. Black and rural families reported a lack of safe environments as a barrier to physical activity among the children in their communities. Latinx families reported a lack of access to sports or recreational programs for their children, in addition to children having to stay home after school while parents worked, as reasons for child obesity in their communities.

 

Oral health

Oregon takes a comprehensive approach to address oral health issues across the lifespan through building partnerships to support the integration of oral health in the CCOs, delivering school-based oral health programs, promoting oral health prevention during childhood, and continued surveillance of the oral health status of all Oregonians. Local public health agencies are accountable for a developmental metric to increase dental visits for children 0 to 5 years old.

 

Exposure to secondhand smoke

CCOs will be monetarily incentivized for reducing cigarette smoking among their members. Efforts continue to encourage the Oregon Department of Education (ODE) Office of Child Care to ban cigarette smoking on the premises of certified childcare homes during business hours or when children are present.

 

 

Adolescent Health

Strengths and Needs

19% of Oregon youth live in a household below the poverty line, and 51% of households with adolescents experienced rent burden, with 27% experiencing extreme rent burden. A strength among this population is that 97% of Oregon youth have health insurance. Among 11th graders, 18% report having an unmet physical health care need and 22% an unmet emotional health care need. These rates are higher for youth with disabilities, LGBTQ+ youth, and Native youth; symptomatic of a lack of or limited culturally competent services for these communities.

 

Successes, challenges and gaps

Injury

Unintentional injury is the leading cause of death among 10-24 year olds, with injury related to motor vehicles being the most common cause among 15-24 year olds. Suicide was the second leading cause of death among 10-24 year olds in Oregon. The Oregon rate of youth suicide ranked 17th among all states. Rates among youth considering and attempting suicide have increased since 2013 and are higher among Native American youth, LGBTQ+ youth and youth with disabilities, reflecting a lack of resources and supports for these communities.

 

Physical activity

Less 12-17 year olds are physically active for at least 60 minutes per day in Oregon than nationally, and this percentage has been decreasing. Cis male 11th graders are more likely to have access to five days of physical activity compared to their cis female and gender diverse peers. Likewise, lesbian, gay and bisexual 11th graders have less access to physical activity than their straight peers. This could point to heterosexual and cis normative spaces/norms within physical education and physically active extracurricular activities. Only 2% of Oregon schools have established, implemented, and/or evaluated a Comprehensive School Physical Activity Program.

 

Bullying

Almost one in three 8th graders and one in five 11th graders have been bullied in the last 30 days, with American Indian, Native Hawaiian/Pacific Islander, and LGBTQ+ students facing higher rates of bullying; reflecting systematic oppression faced by these communities in and outside of schools. The percent of youth missing school because they felt unsafe in the last month has increased since 2013, however youth who had a supportive adult at school were less likely to miss school because they felt unsafe.

 

Adolescent well visit

In Oregon, bisexual, transgender, and gender diverse 11th graders are less likely to have an annual well-visit than their heterosexual and cis gendered peers. A lack of LGBTQ+ friendly clinic space and staff could create unwelcoming environments that create these inequities. The percent of youth with unmet physical and mental health needs in Oregon is about on par with the national percent of youth without preventive care. However, this rate has been increasing over time, even as the rate of well visits has increased.

 

Oral health

Black 8th and 11th graders in Oregon have less access to preventive dental care than their White peers, pointing to the need to alleviate barriers and provide greater levels of culturally competent access in communities of color. Sixty-nine percent of 8th graders and 75% of 11th graders in Oregon report having ever had a cavity.

 

Exposure to secondhand smoke

Oregon’s smoking prevalence among youth has been declining over time, but adolescents still have exposure to secondhand smoke. Almost a third of 8th and 11th graders in Oregon live with someone who smokes or vapes tobacco. Inequities in exposure to secondhand smoke exist, with more children with special health care needs living in households where someone smokes, as compared to children without a special health care need. There are also racial/ethnic disparities in exposure to secondhand smoke among Oregon youth.

 

Current efforts and needed strategies

Injury

OHA has focused youth brain injury prevention efforts on concussions sustained by sports activities. Legislatively funded pieces of the Youth Suicide Intervention and Prevention Plan invest in effective prevention programs and statewide infrastructure. Oregon also adopted legislation requiring school districts to adopt policies related to suicide prevention, intervention, and postvention, and is working on safe gun storage legislation.

 

Physical activity

Oregon has begun to implement legislatively required physical education minutes in grades K-8, and has legislatively mandated data collection. There is legislatively dedicated funding to Safe Routes to School infrastructure. Oregon participated in a Children’s Healthy Weight CoINN to accelerate progress in implementing new physical education standards, including focus groups with school administrators. Transgender youth cited concerns of mockery in school-based locker rooms, fear of being outed and restrictions on participating in gender-based sports as barriers to physical activities.

 

Bullying

Legislation mandates that all schools have policies prohibiting bullying, harassment and cyber-bullying, including reporting requirements for all school employees. 2019 legislation established a statewide system to help districts decrease acts of harassment, intimidation, bullying, and sexual harassment. OHA designed a youth health surveillance question to measure perpetuation of bullying in 2019. Bullying was ranked the number one priority among Black, immigrant/refugee, and rural families. Transgender youth ranked bullying as second highest priority.

 

Adolescent well visit

Oregon’s adolescent well-visit rates benefitted from incentivizing CCOs to increase well-visits among their members up until 2019. Oregon has had success in creating and disseminating guidance documents for the well-visit. Integrating health services into schools has been difficult in some communities due to a lack of providers and financial constraints. In 2020, Oregon’s CCOs will no longer have incentives to increase adolescent well visit completion. Gender diverse youth cited inclusive, affordable care as a major issue, with cost and lack of parental support being reported as barriers to seeking specialty medical help.

 

Oral health

MCAH builds partnerships to support the integration of oral health in CCOs, the delivery of school-based oral health programs, and the promotion of oral health during adolescence. In 2014, the Oregon SBHC Program expanded the list of providers meeting SBHC certification standards to include dental health professionals. As of 2018, 15 SBHCs had dental providers. The Oregon SBHC Program participates in the Oregon Oral Health Coalition’s K-12 subcommittee to inform the provision of technical assistance to school-based health centers for oral health services.

 

Exposure to secondhand smoke

MCAH works to develop a policy agenda that decreases youth exposure to tobacco products and decreases likelihood for initiation and use, including working with partners to analyze the impact of policy changes raising the legal age of purchase for tobacco and vaping products. Starting in 2019, Oregon’s CCOs will have an incentive to reduce cigarette smoking prevalence among their members.

 

Children and Youth with Special Health Care Needs (CYSHCN)

Nearly one in five Oregon children under 18 years has a special health care need; 18% are Latino (NSCH 2016-17). Thirty-nine percent of Oregon CYSHCN receive care that meets the criteria for a medical home; the medical home qualities that CYSHCN are least likely to experience are effective care coordination and getting referrals for doctors or services (NSCH 2016-17).

 

Oregon children generally, and CYSHCN specifically, do not receive transition to adult health care services (NSCH 2016-17). Eighty-six percent of CYSHCN who receive care in a medical home, and 86% of CYSHCN who experience emotional, developmental, and behavioral conditions, did not receive transition services. This is consistent with findings from Oregon’s CMC CoIIN project; one-third of the parents interviewed reported that their behavioral health provider did not provide notice that their child’s care would end at age 18.

 

Most Title V partner survey respondents selected transition to adult health care as the priority on which to focus for Oregon CYSHCN. Respondents who work for organizations that primarily serve diverse communities (e.g., AI/AN, Black/African American) most often selected medical home as the priority on which to focus for CYSHCN. Respondents who work for organizations that primarily serve individuals with disabilities most often selected transition to adult health care as the priority.

 

Results of our PNA with SCAFO showed that families of Black CYSHCN commonly experience difficulty accessing behavioral/mental health and specialty services. They also often experience insurance coverage and re-authorization challenges or trying to find providers within their child’s network. Family participants described having to persistently advocate for services for their children, e.g., one family member stated, "I ended up calling and calling trying to get into the doctor, and they kept telling me to wait. One day I decided I’m gonna pack a lunch, I’m gonna go down, I’m gonna sit in this doctor’s office, and I have all day until they give me a referral…We ended up getting that referral…"

 

Families described having long wait times to get appointments and difficulties scheduling appointments. The types of challenges that families described related to culturally responsive care focused on the lack of black health care providers and experiencing racial stigmatization. For example, one family member stated, “I got my son’s medical records one time… and the comments that the doctor made – ‘You can tell that she’s a young, single, unwed mother.’ …it has absolutely nothing to do with my son, the fact that he has a tumor on his optic nerve. He’s miserable. He has seizures. He’s on medication, so yeah, he’s gonna cry for hours.”  

 

Racial stigmatization creates conditions such that members of a racial/cultural group distrust the healthcare system and have low expectations of finding healthcare providers that represent their race/culture. These perceptions were described by family members of Black CYSHCN in 9 focus groups. For example, one family member described struggling with overcoming the perception in the Black community that if she asked for help with caring for her child, she will be separated her from her child. She appealed to the health care system to assure Black families that asking for help will not disadvantage them. In 7 focus groups, family members described that it was not realistic to envision having a Black health care provider for their child. Family members also faced barriers when they attempted requesting a Black health care provider.

 

Five of SCAFO’s focus groups were composed of family members of CYSHCN aged 18-25 years to discuss transition to adult health care. Families described needing to stay involved in their child’s life after turning 18 because their child was unable to manage their care on their own or because the family member did not trust the health care system to well attend to their child’s care needs. When talking about their involvement, family members often described challenges to communicating with their child’s providers because of patient privacy.

 

Family members described not receiving supports from the healthcare system in the process of transition in 4 of the focus groups. For example, one family member felt that their child’s healthcare provider did not provide the requested help in meeting their child’s needs. Another family member encountered challenges in maintaining health insurance, which interfered with getting a referral to an adult provider. Yet another family member described the challenges in working with their young adult’s specialists.

 

At the time of Block Grant report preparation, LCA and OCCYSHN were completing analysis of focus groups data with families of Latino CYSHCN in Central Oregon. Preliminary findings show that families experienced long wait times for care, lack of providers locally, and lack of quality care locally that make accessing health care challenging. “I already decided to take him to Portland because as I said, I did not like how they treated me [locally]… it took three years for him to be diagnosed. When I took him to Portland, he already had his iron at 1, when what he needed was 57. And the [Portland] doctor said: "Why did it take so long? A little longer and his red and white blood cells would no longer serve him anymore, and if it had taken longer, he could have had leukemia…in Portland they quickly detected the problem he had. ”

Similar to families of Black CYSHCN, Latino families reported having to advocate persistently to ensure that their child received needed care in health care and education settings. We were not able to collect data from an adequate number of families of YSCHN 18-25 years old to find saturation in transition themes; however, it was clear from the families we did talk with that they were not prepared for transition to adult health care. Latino families also experienced racial stigmatization in health care settings and challenges with interpreters that included interpreters not being available, delayed appointments when an interpreter is requested, and frustration with interpretation quality.

 

When OCCYSHN solicited priority selection input from stakeholders, we proposed maintaining medical home and transition for 2021-2025 (see Supporting Document 2 for rationale). We asked stakeholders to rate the extent to which they agreed with our proposal using a Fist to Five consensus building tool. All respondents agreed with our proposal; 73% and 60% of respondents strongly agreed with maintaining medical home and transition respectively.

 

In Oregon the Title V Block Grant is administered by two separate agencies.  The designated Title V Agency is the Center for Prevention & Health Promotion (CP&HP) in the Public Health Division, Oregon Health Authority (OHA). OHA has fiscal responsibility for the Block Grant, and transfers 30% of total funds required for children with special health care needs to Oregon Health and Sciences University (OHSU).

 

Patrick Allen is the Director of the Oregon Health Authority under Governor Kate Brown. OHA has responsibility for health-related programs in the state. The attached organizational chart shows the eight Divisions within OHA: Agency Operations, Fiscal Operations, Equity and Inclusion, Health Systems, External Relations, Health Policy and Analytics, Public Health, and State Hospital. Title V sits under the Public Health Division (PHD), which is led by State Public Health Director Lillian Shirley. 

Title V CYSHCN services are administered through the Institute on Development & Disability (IDD) within the Oregon Health & Science University (OHSU) School of Medicine, by the Oregon Center for Children and Youth with Special Health Needs (OCCYSHN). Under Oregon statutes 444.010, 444.020 and 444.030, OHSU is designated to administer services for CYSHCN.  IDD’s goal is to unite clinical, educational, research, and public health programs to improve the lives of individuals with disabilities. IDD, directed by Kurt Freeman, Ph.D., ABPP, is located within the Department of Pediatrics in OHSU’s School of Medicine.

 

Responsibility for programs funded under Title V (federal and state)

The PHD is made up of three centers, and Title V sits within the Center for Prevention and Health Promotion (CP&HP), under State Title V Director, Cate Wilcox. Ms. Wilcox also serves as the Manager for the Maternal and Child Health Section, and works closely with the CP&HP Center Director, Tim Noe, and managers for Adolescent, Genetic & Reproductive Health, WIC, Injury & Violence Prevention, and Health Promotion & Chronic Disease Prevention to administer and coordinate the Title V state/federal partnership programs conducted across the Center (see VI. organizational chart).

 

Federal Title V Block Grant funds administered by the Title V Director are allocated as described above to OCCYSHN for delivery of services to CYSHCN. The remaining funds allocated to state level Title V activities are delivered through the Maternal, Child and Adolescent Health programs, and through Oregon’s designated local health authorities and tribes. The Title V Program in the OHA and the Title V Program at OCCYSHN have an interagency agreement to document the roles of each agency and to directly transfer 30% of the Title V allocation.  State Title V Agencies in CP&HP and OCCYSHN collaborate to coordinate service delivery, build partnerships, identify gaps and opportunities in delivery systems, and advocate for actions and policies that improve health among maternal and child populations. 

 

The CP&HP supports community MCH programs through intergovernmental agreements and formula grants with local health authorities and tribal governments. CP&HP also contracts with 211info to provide the MCH warmline for Oregon.  Additional state/federal MCH partnership programs such as home visiting, early hearing detection, women’s health, violence prevention, MCH assessment, evaluation and informatics, oral health are also under the direct oversight of the Title V Director. A wide range of MCAH programs which are not directly Title V funded are conducted across the PHD and disseminated to communities around the state. These programs and activities are a critical part of the state investment in maternal and child health and the larger state/federal MCH Title partnership. They include state and federally funded programs in tobacco prevention for women and children, adolescent health, school-based health centers, reproductive health, injury and violence prevention, WIC, and chronic disease prevention.  These programs are under the management of the section managers and the CP&HP Director.

OCCYSHN contracts with local public health authorities to implement a range of care coordination interventions for CYSHCN and their families. Statewide, those interventions include the CaCoon public health nurse home visiting program, community-based shared care planning, cross-sector care coordination teams, and collaborative systems improvement projects (see Section III.E.2.a_b). Title V funds also support some staff effort on Oregon’s CMC CoIIN project aimed at improving the transition from pediatric to adult health care for young adults with medical complexity. OCCYSHN contracts with 211info to support the collection of follow-up data that assess whether CYSHCN family callers pursued 211 referrals, and the outcome of those referrals. The Title V CYSHCN Assessment and Evaluation Unit and the Family Involvement Program are also overseen by the OCCYSHN Director.

 

Oregon Title V leads and engages partners to develop and coordinate maternal and child health services, systems, and policies across the state. Together, the OHA and OHSU Title V offices assess population health and needs, collaborate and coordinate policy development and implementation, and plan and implement services that reach all the targeted MCH populations.  The capacity of the Center for Prevention & Health Promotion and the Oregon Center for Children and Youth with Special Health Needs (OCCYSHN) to promote maternal and child health in each of the six domains is summarized below.

 

(i) Agency capacity to promote health for each population domain

Capacity for Maternal and Women’s Health

• The Reproductive Health Program assures access to preconception and reproductive health services across the state through several federal and state programs.
• The Screenwise Program helps reduce cancer burden and health inequities in Oregon.
• Women's Health initiatives strengthen systems and services through the STEPS program support for pregnant and parenting students and the Rape Prevention and Education program.

 

Capacity for Perinatal and Infant Health

• The MCH Section’s Assessment and Evaluation Unit conducts PRAMS and ECHO (3-year follow back survey). 
• The Perinatal Health Program promotes of optimal prenatal care and other pregnancy related services for all pregnant women. Title V resources support statewide policy development, surveillance, as well as the CoIIN Infant Mortality Initiative, Maternal Mortality Initiative, nurse home visiting, and the Oregon MothersCare (OMC) Program.

 

Capacity for Child Health

• The Early Hearing Detection and Intervention Program facilitates Oregon’s Newborn Hearing Screening mandate. The program receives federal grant support from the CDC and HRSA  for EHDI.
• The Oral Health School Dental Sealant Program provides screening for dental sealants to elementary students in schools around Oregon.
• Babies First!, CaCoon, Nurse Family Partnership, MIECHV, and Family Connects  form a system of public health nurse home visiting programs. Oregon’s Family Connects program is rolling out the first statewide system of universally offered home visiting.
• Title V’s Infant and Child Nutrition Consultant provides leadership to build environments and public policies that increase nutrition and healthy development. A joint appointment with WIC ensures coordination on work ranging from nutrition education to food security and breastfeeding support.
• The State WIC Program contracts with local health agencies to provide WIC services to over 110,000 pregnant and postpartum women, infants, and preschool children each month in all geographical areas of the state.

Capacity for Adolescent Health

• The Adolescent and School Health (ASH) Unit administers the Title V and other funds dedicated to support state level leadership and policy development for adolescent health, including youth sexual health, and to support the adolescent health work of LHAs and tribes.
• School Based Health Center (SBHC) Program administers Oregon's SBHCs, in which comprehensive physical, mental and preventive health services are provided to youth and adolescents in a school setting. 
• The Healthy Kids Learn Better (HKLB) Program (Coordinated School Health model) is a statewide initiative to help local schools and communities form partnerships and reduce physical, social and emotional barriers to learning. 

 

Capacity for Children and Youth with Special Health Care Needs

OCCYSHN improves systems of care for CYSHCN with the following activities:

• Training, support, and consultation for health professionals statewide to improve capacity to serve CYSHCN.
• Support for communities to develop and sustain care coordination efforts for CYSHCN.
• Information, resources, and peer support for family members of CYSHCN.
• Integration of family perspective into systems of care improvement.
• Partnering with local public health authorities to provide care coordination for CYSHCN.
• Ongoing population-based assessment and evaluation to identify and address the needs of Oregon CYSHCN.
• Provide data and analysis to inform policy and administrative decision-making.

 

Capacity for Cross-cutting/system building

Having MCH, WIC, Adolescent and Women’s Health, and Chronic Disease Prevention programs all housed in the CP&HP provides a unique opportunity for Title V to expand capacity and coordinate on cross-cutting/system building initiatives.  

• The Tobacco Prevention and Education Program supports the tobacco quitline, social marketing, and support to communities and tribes to implement policy and system change.

• The integrated Chronic Disease Prevention Program includes physical activity, breastfeeding and nutrition, diabetes and asthma prevention.
• The Oral Health Program strengthens statewide policy, access to preventive care, and conducts oral health surveillance.
• The Assessment and Evaluation Unit of the MCH section conduct surveillance, evaluation, assessment and analysis to support core MCH capacity on both the state and community level.

 

(ii) Title V program capacity to provide a statewide system of services for CSHCN

 

OCCSYHN engages in a variety of partnerships for public health impact, and collaborates on research, education, and policy efforts on behalf of CYSCHN. Additionally, in keeping with the National Standards for Systems of Care for CYSHCN, OCCYSHN’s community-based programs focus on integrating care and services. As promoted in the Care Coordination System Standards (AMCHP National Standards 2.0, page 10), OCCYSHN supports local health department partners to facilitate cross-sector shared care planning, with a focus on family goals for CYSCHN. A percentage of these shared care plans focus on CYSHCN preparing for the transition from pediatric to adult health care.  OCCYSHN’s Family Involvement Program takes a variety of approaches to ensuring that family strengths are respected in the delivery of care. See OCCYSHN’s State Action Plan Narrative (Section III.E.2.a_b) for a description of OCCSYHN’s community-based efforts, and how they fit into a continuum of statewide systems improvements for CYSHCN. Medicaid covers all children eligible for SSI in Oregon, which further increases OCCYSHN’s capacity to serve CYSHCN.

 

 

(i) and (ii) State and local level Title V staffing, including Senior level planning, evaluation and data analysis staffing

Cate Wilcox, MPH, has been the Title V Director since 2013, and has 35 years of MCH experience. Other key MCAH staff include: Community Systems manager Jordan Kennedy, and Assessment and Evaluation manager John Putz. MCH program and policy staff include the Title V Coordinator, MCH policy specialists, the MCH epidemiologist, research analysts, informaticists, public health educators, public health nurses, state home visiting system specialists, oral health specialists, an audiologist, and adolescent and school health specialists. Most of the MCH staff have graduate level degrees in public health, health policy, public administration or medical or dental professional degrees and many years’ experience in public health planning, implementation and evaluation. A total of 214 FTE staff are employed within the Center for Prevention & Health Promotion, 56 FTE of which are in the MCH Section, and 18 of those are supported directly by the Federal Title V grant funds.

Benjamin Hoffman, MD CPST-I FAAP has been director of OCCYSHN since 2017. He has been a pediatrician for over 25 years, and he is a nationally recognized expert in child injury prevention and education. OCCYSHN employs 16 staff with 12.9 FTE, and 4 community-based Parent Partners. Staff have expertise in public health nursing, developmental pediatrics, genetics, nutrition, special education, community engagement and development, family professional partnerships, health policy, assessment and evaluation, and cultural competency. OCCYSHN is currently recruiting a half-time Office Assistant and a full-time Systems Quality Improvement & Innovation Manager.             

 

OCCYSHN hires, contracts with, and supports four Parent Partners from diverse cultural and linguistic backgrounds, including Spanish and ASL. OCCYSHN is staffed with a Systems and Workforce Development (S&WD) Manager, four S&WD staff (including an RN as CaCoon Program Lead), a Family Involvement Program Manager and a Resource Specialist (both parents of CYSHCN), a Communications Coordinator, an Assessment and Evaluation (A&E) Manager, two A&E Research Associates and a Research Assistant, a Program Administrator and an Administrative Coordinator. IDD’s developmental pediatricians, speech pathologists, occupational therapists, physical therapists, etc. are also available for consultation.

 

The direct delivery of local MCAH programs is provided by staff at LPHAs. There are approximately 2,000 county public health staff in Oregon, including 34 health department administrators, 510 public health nurses and nurse practitioners, and 130 other health professionals in Oregon LPHAs.  Title V MCAH services are also delivered by five of Oregon’s nine federally recognized tribes.

 

The direct delivery of OCCYSHN programs is provided by public health nurses, community-based physicians and mental health providers, Parent Partners, and other professionals who implement community-based programs around the state.

 

(iii) Parent and family members

The MCAH program has family member representatives on a variety of teams including the CoIIN initiative, the Maternal Mortality Review Advisory Board, and the EHDI Advisory Committee. All parent members are reimbursed for their time as consultants.

 

OCCYSHN hires, contracts with, and supports family representatives from diverse cultural and linguistic backgrounds, including Spanish and ASL.

 

(iv) Additional MCH workforce information

A variety of forces are driving changes in the MCH workforce in Oregon.  Health systems reform and Public Health Modernization are changing the role of state and local MCH, the skillsets needed for success, and the funding mechanisms that support MCH services. The changing demographics of Oregon’s MCH population and Title V’s commitment to health equity also drive changes in both the skills and profile of the MCH workforce. The public health nurse workforce is significantly older than the nursing workforce in general, with half of Oregon’s PHNs nearing retirement as compared to one third of other nurses.  High levels of turnover in both state and local level MCH supervisors, administrators, and staff will likely continue in the coming five years as experienced staff retire and take new positions in the evolving health system. As a result, a focus on workforce recruitment, skill development and support will be critical to Title V’s success moving forward. 

 

 

 

Oregon’s Title V program is strongly committed to working collaboratively with a wide range of partner agencies to expand the capacity and reach of the state Title V MCAH and CYSHCN programs. These partnerships and collaborations span public and private sector entities across the state, as well as MCHB and other Federal programs which serve the MCAH population.  The table in Supporting Document 3 provides a detailed description of key collaborations and partnerships for the MCAH Title V program as listed below.

 

1. Other MCHB investments: State Systems Development Initiative (SSDI), Maternal, Infant and Early Childhood Home Visiting (MIECHV); Intimate Partner Violence CoIIN, Infant Mortality CoIIN; Children’s Healthy Weight CoIIN, Healthy Start Grants
2. Other Federal Investments: Nutrition Program for Women, infants and Children (WIC), Early Hearing Detection and Intervention Program (EHDI), Birth Anomalies Surveillance System (BASS), Maternal Mortality and Morbidity Review Committee (MMMR), , Rape Prevention Education, PREP Teen pregnancy grants, Pregnancy Risk Assessment Monitoring System (PRAMS), CDC Immunizations,  Preschool Development Grant
3. Other HRSA Programs: FQHCs
4. State and local MCH programs: Universally Offered Home Visiting, Local Public Health MCH Programs, Conference of Local Health Officials (CLHO)
5. Other Oregon Health Authority programs: Adolescent and School Health Programs, Injury and Violence Prevention Program, Tobacco Prevention and Education Program, Chronic Disease Prevention, HIV/STD, Newborn Metabolic Screening Program, Medicaid and CHIP, Healthy Systems, State Public Health Director’s Office, Office of Equity and Inclusion
6. Other governmental agencies: Social Services and Child Welfare, Department of Education, Department of Justice, Early Learning Division
7. Tribes, Tribal organizations and Urban Indian Organizations: Oregon Tribes, Northwest Portland Area Indian Health Board, Native American Youth and Family Center
8. Public health and professional educational programs and Universities
9. Other public and private organizations serving the MCH population

 

OCCYSHN collaborates with state and community-based agencies and organizations, healthcare and community-based providers, and family members of CYSHCN. OCCYSHN’s Family Involvement Program identifies and mentors family members of CYSHCN to provide their critical perspective to program and policy efforts, both within OCCYSHN, and at regional and statewide levels. OCCYSHN collaborated with OHA on revising implementation of statewide nurse home-visiting efforts. OCCYSHN benefits from collaborative relationships with OHSU’s broad pediatric clinical programs, and with the Oregon Pediatric Improvement Partnership (OPIP). It partners with LPHAs, ESDs, and local health providers and professionals to implement statewide community-based programs.

In an effort to better serve some culturally specific CYSCHN, OCCYSHN collaborates with the Sickle Cell Anemia Foundation of Oregon and the Latino Community Association of Central Oregon. Additionally, the ECHO-based virtual learning communities implemented by OCCYSHN provide a platform for health and service providers across the state to collaborate on improving care coordination for CYSHCN.

OCCYSHN is leading Oregon’s participation in an MCHB-funded Collaborative Improvement and Innovation Network (CoIIN) initiative (2017-2021). Oregon’s project focuses on improving the transition from pediatric to adult health care for young adults with medical complexity. Implementation involves collaborating with Family Representatives (parents of young adults with medical complexity), and representatives of Children’s Health Alliance/Foundation, OHSU General Pediatrics, and Shriners Hospital for Children.

 

 

Determination of priority needs and changes from previous five-year cycle

Methodologies used to identify and prioritize Oregon’s MCAH needs are described in detail in Section III.C.2a above, as well as in Supporting Document 3.  The seven state priority needs reflect the overarching MCAH needs identified through the Needs Assessment and provide a framework within which to address Oregon’s selected NPMs and SPMs.  Additionally, selected priority needs reflect the alignment of MCAH and CYSHCN priorities with other key state plans and work.  The need and rationale for work on each NPM and SPM is detailed in each relevant data tool (available at https://www.oregon.gov/oha/PH/HEALTHYPEOPLEFAMILIES/DATAREPORTS/MCHTITLEV/Documents/2020%20Title%20V%20Data%20Tools%20Book%20Final.pdf).

 

Changes from the previous Title V five-year cycle reflect an increased focus on upstream impactors of health including social determinants of health and equity, as well as an evolving understanding of the foundations of lifelong health and the importance of addressing structural and system changes.

 

Relationship of Oregon’s priority needs to selected NPMs and SPMs

Oregon’s priority MCAH needs and their associated NPMs and SPMs are:

1. Safe and supportive environments

This priority need will be addressed through work on: child injury, bullying, toxic stress/trauma/ACES & resilience, and social determinants of health and equity.

2. Stable and responsive relationships; resilient and connected children, youth, families and communities

This priority need will be addressed through work on: well woman care, breastfeeding, child injury, bullying, toxic stress/trauma/ACES & resilience, culturally and linguistically appropriate services, and social determinants of health and equity.

3. Improved lifelong nutrition

This priority need will be addressed through Oregon’s Title V work on: well woman care, breastfeeding, toxic stress/trauma/ACES & resilience, culturally and linguistically appropriate services, and social determinants of health and equity.

4. Increased health equity and reduced MCAH disparities

This priority need will be addressed through work on: well woman care, breastfeeding, child injury, bullying, medical home and transition to adult care for CYSHCN, toxic stress/trauma/ACES & resilience, culturally and linguistically appropriate services, and social determinants of health and equity.

5. Enhanced social determinants of health

This priority need will be addressed through work on: well woman care, breastfeeding, child injury, bullying, medical home and transition to adult care for CYSHCN, toxic stress/trauma/ACES & resilience, culturally and linguistically appropriate services, and social determinants of health and equity.

6. High quality, culturally responsive preconception, prenatal, inter-conceptions and post-partum services.

This priority need will be addressed through work on: well woman care, breastfeeding, toxic stress/trauma/ACES & resilience, culturally and linguistically appropriate services, and social determinants of health and equity.

7. High quality, family-centered, coordinated systems of care for children and youth with special health needs

This priority need will be addressed through work on: medical home, transition to adult health care, culturally and linguistically appropriate services, toxic stress/trauma/ACES & resilience, and social determinants of health and equity.

 

Emerging issues not selected

Over 70 emerging issues identified through the NA were narrowed down to seven for data tool development and partner discussion (detailed tally and final selection in Supporting Document 3). The decision to continue two previous cycle state priority areas (trauma/ACEs and CLAS) and add one (social determinants of health and equity) was based on criteria including alignment with partners, where Title V could best add impact, and importance of the topic.