Delaware is a small mid-Atlantic state located on the eastern seaboard of the United States. Geographically, the state's area encompasses only 1,982 square miles, ranking Delaware 49th in size among all states.  Delaware is bordered by New Jersey, Pennsylvania and Maryland, as well as the Delaware River, Delaware Bay, and Atlantic Ocean.  Centrally located between four major cities, Wilmington, the state’s largest urban center, is within an hour’s drive to Baltimore, MD and Philadelphia, PA and withing two hours driving distance from New York City and Washington, D.C.

According to estimates from the U.S. Census Bureau, in 2019, the State of Delaware had about 973,764 residents, of which approximately 69% were White and 23% were Black. The Hispanic population is steadily increasing, from 8.7% in 2013 to 9.6% in 2019.  About 20.9% of Delawareans are children under the age of 18 and 5.6% were under the age of five.

Of Delaware's three counties, New Castle County, in the northern third of the state, is the largest in population with about 558,753 residents or about 58% of the state's total population. New Castle County has a large population of African-American residents (nearly 26%) and within the city of Wilmington, the state's largest concentration of African-American residents (about 58% of the city's population). New Castle County also has a large population of Hispanic residents, 10%. Kent County, home to the state’s capital of Dover, has an estimated 180,786 residents (66% White and 27% Black). For Sussex County, which includes very rural areas as well as coastal resort towns, the 2019 population was approximately 234,225 (83% White, 12% Black). Like New Castle, Sussex County also has a growing Hispanic population, estimated at 9.3% for 2019.

In 2019, statewide, it is estimated that there were about 181,705 women of childbearing age and 247,017 children and adolescents aged 0-21 years of age (Census).Preliminary data shows 10,340 births for 2019.  According to 2017-2018 combined years of data 22.3% or 45,379 (National Survey of Children’s Health/NOM 17.1) have special healthcare needs.

Economic Indicators

In Delaware, 12.8 percent of children (approximately 27,000 kids) lived in poverty in 2017-2019, down from 21.2 percent in 2012- 2014. This is Delaware’s lowest child poverty rate since 2004-2006.  The highest rates are among those children aged 0-5 at 15.5%.  According to Kids Count in Delaware, 2020, from 2017-2019, 22.2% of Delaware households were families in poverty with female head and children under 18.  The median income of two-parent households with children under the age of 18 in Delaware from 2017-2019 was $104,486, compared to $36,877 for single-parent households. 

Of Delaware's children, 39.6% lived in a one-parent household in the 2017-2019 time. Almost half (46.6%) of births occurring in the five-year period 2014-2018 were to single mothers, with 70.5% of Black births, 61.5% of Hispanic births, and 34.9% of White births occurring among single mothers (Kids Count in Delaware, 2019). As of 2019, an average of 56,814 households per month received food assistance through Delaware's Supplemental Nutrition Assistance Program (SNAP).  (KIDS Count in Delaware, 2020).

Availability of Health Providers

Although Delaware is a relatively small state, disparities exist between its three counties with regard to healthcare access.  Access to health care services poses an issue for many uninsured, underserved and otherwise at-risk populations in Delaware.  A myriad of factors affect access to health care, including lack of health insurance, lack of providers, an overall mal-distribution of providers, etc. The Health Resources and Services Administration/Bureau of Health Workforce designated the following as Health Professional Shortages Areas (HPSAs).  Regardless of their location, Federally Qualified Health Centers (FQHCs) are also automatically designated as HPSAs.  In addition, many of the state correctional facilities are designated as HPSAs. 

New Castle County:

• 4 Primary Care HPSAs
• 1 Dental HPSA

Kent County in its entirety is a:

• Medically Underserved Population
• Primary Care HPSA
• Dental HPSA

Sussex County in its entirety is a:

• Medically Underserved Area
• Primary Care HPSA
• Dental HPSA
• Mental Health HPSA

Services for CYSHCN

In Delaware, Children and Youth with Special Health Care Needs (CYSCHN) are served by the Birth to Three Program for infants and toddlers aged 0-3 and by evidence based home visiting program services.  The mission of the Birth to Three Early Intervention System is to enhance the development of infants and toddlers with or at risk for disabilities or developmental delays, and to enhance the capacity of their families to meet the needs of their young children.  Child Development Watch (CDW) is the statewide early intervention program under the Birth to Three Early Intervention System.  The CDW program provides developmental assessments of children birth to 3 years of age and service coordination for developmental services and therapies.  CDW is a collaborative effort with staff from the Division of Public Health, the Department of Services for Children, Youth and Their Families, the Department of Education and the Alfred I. DuPont Hospital for Children (the only children’s hospital in Delaware) working together to provide early intervention to young children with special health care needs and their families. 

The Children and Youth with Special Health Care Needs Director (CYSHCN) sits in the Division of Public Health’s Maternal and Child Health Bureau in the Family Health Systems Section.  This position is essential as it functions to bolster and cultivate family and professional partnerships by working closely with families and family-led organizations.  Delaware’s Birth to Three system works in coordination with the CYSHCN Director through Family SHADE, a large network of partners that work to improve the system of care of services and develop family-centered care, which has become part of the culture for DPH in addressing the needs of families of young children with special needs. 

Context for Title V within the State

Governor John Carney took office as Delaware’s 74th Governor in January 2017.  Governor Carey heads the Executive Branch of state government in Delaware.  Within the Executive Branch, the Delaware Department of Health and Social Services (DHSS) is a cabinet-level agency and is led by Secretary Molly Magarik.  The Delaware Department of Health and Social Services is one of the largest agencies in state government.  DHSS has 11 divisions and employs more than 4,000 individuals in a wide range of public service jobs.  In one way or another DHSS affects almost every citizen in our great state.  Our divisions provide services in the areas of public health, social services, substance abuse and mental health, child support, developmental disabilities, long-term care, visual impairment, aging and adults with physical disabilities, state service centers, management services, financial coaching, and Medicaid and medical assistance.  The Department includes three long-term care facilities and the state's only public psychiatric hospital, the Delaware Psychiatric Center.

The Division of Public Health (DPH) is one of the largest divisions within DHSS and home to Title V, the agency is responsible for planning, program development, administration and evaluation of maternal and child health (MCH) programs statewide.  DPH is led by Karyl T. Rattay, MD, MS, FAAP. FACPM who serves as the Division Director.  DPH remains steadfast to it mission, which is to protect and promote the health of all people in Delaware.  Because Delaware does not have county or local health departments, DPH administers both state and local public health programs.  Within DPH, the Family Health Systems (FHS) section has direct oversight of Title V, including the Children and Youth with Special Health Care Needs (CYSHCN) program. 

Authority and regulatory charges for the Division of Public Health come from Title 16 of the Delaware Administrative Code, which governs health and safety. Specific to Family Health, the code includes regulations for operation of a Birth Defect Surveillance and Registry Program and an Autism Surveillance and Registry Program, both of which are funded in part by Title V. The Delaware Healthy Mother and Infant Consortium (DHMIC) is also established in code and is charged with coordinating efforts to prevent infant mortality and improve the health of women of childbearing age and infants in the State. This year, the DPQC was formally established in Delaware Code and signed by the Governor during a virtual press conference in July 2020.  Data collection and analysis is crucial to the DPQC’s efforts to improve the care and outcomes of DE’s women and their babies.  The foundation of the collaborative is to share current data to use for benchmarking and QA/QI, identify best standards of care/protocols, realignment of service providers and service systems, continuing education of professionals and increasing public awareness of the importance of perinatal care.  As such, our Title V Program works closely with the DHMIC to align our priorities and strategies as much as possible. We also have regulations in Title16 for school-based health centers which were codified in 2012, and subsequently regulations were established and updated in 2017.  The Newborn Hearing and Metabolic Screening Programs, which are not primarily funded by Title V, also work in close coordination with the program.

As of January 1, 2016, DPH was charging the birth facilities and midwives $135.00 per newborn for the Newborn Screening program, a primarily revenue funded program.  The last budgetary analysis dictated that the fees should be raised to $185 to cover operations.  This triggered multiple discussions with our hospital partners and the decision was made to create a RFP for both the laboratory and follow-up portions of the program.  The RFP was published in 2017 and a contract was finalized with A.I. duPont in December 2017.  The contract with A.I. duPont includes both the program and laboratory services and A.I. duPont sub-contracts with Perkin Elmer to provide the laboratory services. Since outsourcing the program in 2018, the program has not increased the $135 fee.  The Delaware Newborn Screening Advisory Committee began meeting again in December 2018.  This was the first meeting held after the transition of contracting the program out.  The meeting was an introductory meeting where we reviewed the intention and purpose of newborn screening.  We also described the new structure of the program including the relationship between DPH and A.I. duPont.  Our intent was to prep the Advisory Committee on needed regulation changes due to this transition.  Advisory Committee members, DPH and AI. duPont spent quite a bit of time discussing all of the items that would be coming to a vote at the next meeting which included the elimination of the second screen, how long blood spots should be stored and expanding the newborn screening panel.  The expansion would consist of four additional conditions, Pompe Disease, Muccopolysaccharidosis Type I (MPS I), X-Linked Adrenoleukodystrophy (X-ALD) and Spinal Muscular Atrophy (SMA).  The Committee has voted and unanimously approved adding these four disorders to the screening panel as well as eliminating the second screen, timeline for specimen collection and the length of time bloodspot cards are stored.  With Dr. Rattay’s approval, the additional conditions were added to the panel January 1, 2020.  The program drafted the revisions needed to update the regulations to reflect the changes approved by the Board to change the timeline for storage of the specimens and collection of the specimens, the updated regulations were approved.  The program also drafted changes to revise the legislative code but unfortunately, the code need did not reach the legislative floor this past session due other priorities earlier this year.  The legislation is slated to be reviewed early next year.

Current Priorities of the Division of Public Health

The Division of Public Health 2019-2023 Strategic Plan provides a clear and proven path for the division to continue to lead the state’s public health system.  DPH is embarking on the Public Health 3.0 approach. Public Health 3.0 refers to a new era of enhanced and broadened public health practice that goes beyond traditional public health department functions and programs. Cross-sectoral collaboration is inherent to the Public Health 3.0 vision. We are collaborating across multiple sectors and leveraging data and resources to address policies as well as social, environmental, and economic conditions that affect health and health equity. We spent the better part of eight months re­ searching and analyzing our existing goals, strategies, and data; examined current national and local public health challenges; and considered future public health challenges. As a result, we have identified five strategic priorities, of which our new strategic plan is based: Promote Healthy Lifestyles; Improve Population Health and Reduce Health Care Costs; Achieve Health Equity; Reduce Substance Use Disorder and Overdose Deaths. The DPH is doubling its efforts to work collaboratively alongside Delaware state agencies and external stakeholders to address the immediate and long-term health consequences of substance use disorder and violence in communities. To tackle these complicated issues, DPH sees its role as providing prevention expertise, as well as technical assistance related to evidence­ based population health practices.

DPH staff will actively implement this strategic plan by improving our services, participating in robust workforce development activities, and practicing the LeadQuest 10 Principles of Personal Leadership.

Public Health has a unique lens. Our guiding principles call upon us to engage in population-based activities to strengthen community-based public health. Research continues to tell us that while 95 percent of our health care dollars are spent on acute care, these dollars account for only 10 percent of improvements to our health status. For sustainable results, our future efforts must include collaborating with communities to improve their ability to identify the most important determinants of health, to develop strategies to address them, and to implement those strategies. This strategic plan is evidence of our commitment to working strategically with our partners to achieve our vision of healthy people in healthy communities. Final updates were made and the DPH Division Director formally adopted the DPH 2019-2023 Strategic Plan on January 1, 2019.  We expect in the next year, that strategies to address these priorities as well as other priorities surfacing are likely due to the impact COVID-19 has on our population.

During the strategic planning process, the Strategic Plan Action Committee reviewed and used many resources to inform our organizational strategic plan. Those included the State Health Assessment, The Delaware State Health Improvement Plan, Priorities of Governor John Carney and DHSS, national organization public health reports, public health journal reports, and other health entity strategic plans. Another activity that the Strategic Plan Action Committee undertook was to identify and analyze organizational strengths; weaknesses, opportunities, and threats (SWOT) during the strategic planning process.

Simultaneously, the Division is engaged in maintaining its accreditation status by the Public Health Accreditation Board (PHAB).  As an accredited public health agency, over the last four years we have made continuous progress.  We report on that progress in annual reports to the PHAB.  The Division of Public Health officially begun the journey to become reaccredited in January 2020.  Once again, we have assembled DPH PHAB Domain Teams and have begun organizing to develop and collect required reaccreditation documents.  Like our first accreditation run, we are comparing the 12 PHAB Domains national public health service standards with public health services we provide in Delaware.  These PHAB standards are based on the long-standing 10 Essential Public Health Services.  The DPH Domain Teams have met to develop narratives and capture documents describing how we implement public health services in Delaware.  The Title V MCH Director is a Domain 10 team lead, focused on evidence based strategies and standards.

The findings, goals, and strategies that are part of both the Delaware SHIP and DPH’s strategic plan was intentionally factored into the Title V needs assessment process, with the goal of leveraging the results of these comprehensive planning efforts. We believe the input gathered from professional MCH stakeholders, families, and community members through surveys, focus groups, and interviews will reinforce the priorities of healthy lifestyles; population health; reducing health care costs; achieving health equity; and addressing substance use disorder and overdose deaths. 

Health Equity

In Delaware, there is an increased effort to address health disparities and with good reason.  Here are just a few examples of the disparities that exist within our state.

• Infant Mortality.The annual infant mortality rate for 2018 was 5.9 per 1,000 as compared to 5.7 for the U.S. The provisional 2019 annual rate for DE was 6.4 per 1,000. The five-year infant mortality rate (2014-2018) was 7.3 (12.2 for non-Hispanic blacks, 8.4 for Hispanics,  and 4.5 for non-Hispanic whites).  The provisional 2015-2019 five-year infant mortality rate was 7.2 (12.3 for non-Hispanic blacks, 8.0 for Hispanics, and 4.3 for non-Hispanic whites).  The annual black infant mortality saw a 15% (19% if provisional data are included) decline in annual rates. For instance, the annual non-Hispanic IMR has been declining from a high of 13.5 per 1,000 live births to 11.5 and 2018 and 10.9 in 2019 (provisional data).
• Breastfeeding. As per the PRAMS 2018 data the percent overall prevalence of ever breastfed among those who delivered was 86.6% and currently breastfeeding/at the time of survey was 55.9%.  As per the PRAMS data, the 2018 prevalence of ever breastfed among non-Hispanic black was 79.2% as compared to 87.2% among non-Hispanic white, and 93.4% among Hispanics. Similarly, the 2018 prevalence of currently breastfeeding (or at the time of survey) among non-Hispanic blacks was 38.1% as compared with 61.1% among non-Hispanic whites, and 58.7% among Hispanics.
• Teen Births. The 5-year average teen birth rate in the U.S.  in 2001-2005 was 41.8 (22.2 for non-Hispanic white and 61.6 for non-Hispanic blacks) and the 5-year average teen birth rate in Delaware was 41.8 (25.6 for non-Hispanic whites, and 72.1 for non-Hispanic blacks). The 5-year average in teen birth rate in Delaware declined by  (~54%) from a high of 41.8 to 19.4 in 2014-2018 with declines ~51% among non-Hispanic white from 25.6 in 2001-2005 to 12.5 in 2014-2018 and ~60% declines in non-Hispanic blacks from 72.1 in 2001-2005 to 28.6 in 2014-2018.   The disparity ratio in the teen birth rates was 2.3 times for Black teens to White teens.  Despite the racial disparities, Delaware made great strides in five-year average rates among white and black teen birth rates through several population based health interventions.
• Overall Health.  Overall, in 2017-2017, 89.8% of Delaware children reported to be in excellent/very good health (Hispanic, 86.0%; White, 94.5%; Black, 82.7%; Other, 90.4%) as compared with 90.0% (Hispanic, 86.7%; White, 93.1%; Black, 82.7%; Other 90.4%) in the U.S.  Health status varied by income status in Delaware similar to the U.S.. In Delaware, 84.3 % of children in household 0-199% FPL indicated “Excellent/very good health” as compared to 91.3% in 200-299%FPL, 93.9% in 300-399% FPL, and 95.6% in 400% or greater FPL categories.
• Overall Health women of childbearing age. According to 2016-2018 BRFSS data women of childbearing ages (18-44 years) also had poor health based low SES. For instance, 69% of women of childbearing ages whose income was <20,000  indicated they had excellent/very good health as compared to 84% in income category of $20,000-$49,999 and 94% in $50,000 or more income category.
• Smoking. Cigarette use during pregnancy declined ~30% from 12.3% in 2010 to 8.6% in 2018 (2019 provisional is 8.6%) as per birth certificate data. The 2018 smoking rate among non-Hispanic whites was 11.7% (15.% in 2010) as compared to 7.7% in non-Hispanic blacks (11.8% in 2010) and 3.7% in Hispanics (2.9% in 2010). According the PRAMS 2012-2018 data, the prevalence of smoking in last 3-months of pregnancy in 2012 was 13.3% and the prevalence declined in 2018 to 8.6% ~ 5 percentage points (or 35%).  
• Medical Home. In 2017-2018, 49.9% of white children with special health care needs had a medical home (U.S. 56.2%) as compared with 41.1% of black children (U.S. 37.5%) and 47.7% of other children (U.S. 46.5%) and 38% Hispanic (U.S. 38.5%) although both the Hispanic sample was relatively low. Source: 2017/18 National Survey of Children with Special Health Care Needs.

It is clear from these examples that disparities exist across racial and ethnic groups, across ages, and across geographical boundaries.  We know that many of these inequities are a result of the social determinants of health. Focus groups conducted for our needs assessment confirmed that our population experiences challenges with access to transportation to medical visits, access to healthy foods, and safe places to be active. There are language barriers and issues of cultural competency that prevent our Spanish-speaking citizens from being able to benefit from the programs and services that are available. And access to specialists and quality care is often limited by the county in which one lives.

There is momentum building to address health disparities in our state. The Delaware Division of Public Health has established health equity as a strategic priority for the entire division and released the second version of the Heathy Equity Guide for Public Health Practitioners and Partners. The Delaware Division of Public Health (DPH), the University of Delaware’s School of Public Policy & Administration, and other partners created the guide to help Delawareans better understand tools and strategies that promote health equity and support upstream population health approaches. The document is designed to assist all sectors which can include but are not limited to government, education, workplaces, private sector, nonprofit agencies, faith based institutions, and health care settings address underlying causes of health inequities in communities and promote optimal health for all in Delaware. Every person deserves equal access to safe communities that foster opportunities to achieve optimal health and well-being.  The Delaware Healthy Mothers and Infants Consortium continues to emphasize health equity and the social determinants of health, through highlighting the topic on Annual MCH Summit agendas, bestowing health equity awards to individuals and organizations to recognize efforts, and launching an online Health Equity Action Center.

Recognizing the importance of social determinants of health, a place-based, community approach has been established as a key component.  In the past year, a request for proposal was posted to solicit proposals for a backbone organization to manage what we are calling the Healthy Women Healthy Babies (HWHB)Zones project.  This is a main focus of the Delaware Healthy Mother and Infant Consortium’s efforts as it focuses on population-based community interventions, which over the long-term address reducing infant mortality, improve birth outcomes, improving women’s health, and address disparities.  A comprehensive update on this initiative can be found in Well Woman application year narrative.

Health Care Reform Efforts in Delaware

Health care spending per capita in Delaware is higher than the national average. Historically, health care spending has outpaced inflation and the state’s economic growth. Health care costs consume 25% (or approximately 1 billion in FY 2017) of Delaware’s budget. Medicaid cost per capita and the growth in per capita spending have been above the national average. These challenges are not unique to Delaware – affordability is of equal concern to private employer sponsors of Commercial health insurance, as well as some consumer segments who have seen increases in deductibles, copays, and coinsurance.  Delaware’s demographics and the percentage of our citizens with chronic conditions are key drivers of both spending and poor health outcomes. Delaware’s population is older and is aging faster than the national average – we will be the tenth oldest state by 2025. We are also sicker than the average state, with higher rates of chronic disease, in part driven by social determinants including poverty, food scarcity, and violence. In the most recent publication of America’s Health Rankings, Delaware exceeded the national average in cancer deaths per capita, diabetes per capita, infant mortality, and premature death. The hospital landscape is more concentrated in Delaware than in most other markets, with just six acute care hospital systems across the state, with most populations relying on a single hospital for their care. Our hospital systems vary widely in both scale as well as operational efficiency. Primary care and some other physician specialties remain fragmented. Other physician specialties are concentrated. Behavioral health care is in short supply in some parts of the state. Increased demand for health care, as well as inefficiencies in the supply of health care, in combination lead to 25% greater historical spend per capita than the U.S., which itself has among the highest cost health care systems in the world. While we spend more on care, our investments have not led to better health or outcomes for Delawareans. We spend more than average, not to get better access or higher quality care, but simply to address the challenges of an older and sicker population.

After receiving federal grant monies through the Centers for Medicare and Medicaid’s State Innovation Model (SIM) project, Delaware has made a significant investment in transitioning to value-based payment models. Value based payment models enable collaboration between providers and health systems in addition to allowing a greater focus on keeping people healthy through improving primary care. This is vastly different from the traditional Fee for Service model that aligns payment for services with volume, regardless of patient outcomes and whether the overall population of the state is getting healthier. The State has supported these changes from a policy perspective by setting the expectation for Medicaid Managed Care Organizations (MCOs) and State Employee/Retiree Third-party administrators to offer and promote the adoption of value-based models.

Governor Carney established heath care spending and quality benchmarks in Executive Order 25, issued on November 20, 2018.  This order established the CY 2019-2021 quality benchmarks and aspirational longer term goals. While we are still addressing the health care, humanitarian and fiscal crisis created by COVID-19, our essential purpose in driving change to make health care better for all Delawareans through our “Road to Value” remains vitally important.  We need to support our health care system to rebound from the global pandemic with value-based goals so it can be stronger going forward.  Now, more than ever, our vision to improve transparence and public awareness of spending and quality in our State through the adoption of spending and quality benchmarks will assist in these efforts.  In 2018, the Department of Health and Social Services (DHSS), the Delaware Health Care Commission (DHCC) and the Delaware Economic and Financial Advisory Council (DEFAC) worked together to establish the spending and quality benchmarks. Insurers reported initial calendar year 2018 baseline data in 2019, giving them and the Department experience in collecting and reporting data, which is essential to the benchmarks and improving the process moving forward. 

In 2019, Delaware began measuring the total cost of health care, the first step in increasing transparency in how health care dollars are spent. In June 2020, a briefing document of baseline spending was released which provided a preliminary snapshot of the experience in health care spending that occurred in our State based on the data reported so far.  To measure the annual change in health care spending, the DHCC requested data from each insurer in 2019 and again this year.  The DHCC also requested CY 2018 again with the 2019 submission to ensure both data years are produced using the same updated specifications.   The DHCC will continue to support the Department of Health and Social Services in their efforts to construct and launch a health care benchmark plan for the state focused on total cost of expenditures in the state.  DHCC will continue to compute the following two measures on a per member per year basis:

1. Total Medical Expense: all incurred expenses for Delaware residents for all health care services, regardless of where the care was delivered and regardless of the situs of the member’s plan.
2. Net Cost of Private Health Insurance: the costs to Delaware residents associated with the administration of private health insurance (including Medicare Advantage and Medicaid Managed Care).  It is defined as the difference between health premiums earned and benefits incurred.  It consists of insurers’ costs of paying bills, advertising, sales commissions and other administrative costs, premium taxes and profits (or contributions to reserves) or losses.