Kentucky’s Health Care Delivery Environment and the Role of Title V

The Kentucky (KY) state capital, Frankfort, KY, is the location of the Cabinet for Health and Family Services (CHFS), which houses the KY Department for Public Health (KDPH). The Division of Maternal and Child Health (MCH) administers the Title V grant and program. MCH is one of seven divisions of the KDPH.

KY operates a decentralized public health system, with independent and district local health departments (LHDs) serving all 120 counties that are accountable to their local board of health. KDPH operates the personnel and financial systems for LHDs and supports their role in state and federally funded programs via allocations, standards of practice, training, and technical assistance. The Office for Children with Special Health Care Needs (OCSHCN), also an agency within CHFS, administers the state’s Children and Youth with Special Health Care Needs (CYSHCN) program. OCSHCN’s central office is located in the state’s largest city, Louisville, with 11 regional sites throughout the state (serving all 120 counties), and six other satellite clinic locations. All KY citizens are within, at most, 95 miles of an OCSHCN clinic.

Recent changes in the health care landscape for KY include:

• 2011: Implementation of Managed Care Organizations (MCOs) for Medicaid beneficiaries
• 2014: Implementation of provisions for coverage for mental health and substance abuse services, as required by the Affordable Care Act (ACA) in the Medicaid State Plan utilizing a state based health exchange (KYNECT)
• 2016: Transition to the federal insurance exchange (Healthcare.gov) secondary to cost of maintaining the state-based exchange
• Medicaid benefits remain unchanged from the 2013 Medicaid expansion program. In December 2019, Governor Andy Beshear rescinded the Medicaid work requirement proposed by previous Governor Bevin.

The Medicaid program in KY has historically focused on providing health care to subgroups of the lowest income individuals including the elderly, disabled, children, and pregnant women. In 2013, KY chose to expand Medicaid eligibility by extending coverage to individuals with incomes up to 138% of the federal poverty level (FPL) to achieve its three goals:

• reduce the number of low-income residents who lacked health care
• improve the health status of Kentuckians – especially low-income residents without prior access to health care coverage
• boost KY’s economy

Through the ACA, KY has been successful in reducing uninsured rates by expanding Medicaid and using the HealthCare.gov enrollment platform.

As of March 2020 (prior toCOVID-19 increase in Medicaid enrollment), KY had enrolled 1,198,361 individuals in Medicaid/CHIP. This was an increase of 97.49% since enrollment began in the KYNECT in 2013 (Medicaid.Gov, 2020).

In January 2014, KY implemented provisions of the ACA to provide coverage for mental health and substance abuse services. Since implementing the ACA requirements, KY has successfully improved provider enrollment increasing behavioral health providers and substance abuse disorder providers. This is positive improvement for access to these critical services for MCH populations and addressing the epidemic of substance abuse, a major priority indicated by the MCH needs assessment in both 2015 and 2020. A common concern expressed during needs assessment meetings was difficulty for families to find providers. In collaboration with many partners, in 2018 KY launched the Findhelpnowky.org website to provide a link for KY providers, court officials, families or individuals to locate substance use disorder (SUD) treatment programs. This site has informational resources, developed for professionals or individuals, such as definition of common terms, contact information, and more (findhelpnowky.org, 2020).

Secondary to cost considerations, KY transitioned from KYNECT to the Healthcare.gov platform in November 2016. Current plans are in development to return to the state run KYNECT platform in November 2021. In state fiscal year (SFY19), KY Department for Medicaid Services (DMS) contracted with five Managed Care Organizations (MCOs) to provide healthcare services for Kentuckians eligible for Medicaid. These included Aetna, Anthem, Humana, Passport, and Wellcare. As of June 1, 2020, there were 1,451,854 Kentuckians enrolled with one of these MCOs (KY Dept. for Medicaid Services, 2020). For 2020, KY’s exchange is offering additional offerings for individual plans from two insurers, Anthem and CareSource, with 56 counties where residents can select from both Anthem and CareSource. During the 2019 enrollment period, 83,139 people enrolled in the private individual market plans for 2020 (Healthinsurance.org, 2020).

Medicaid expansion has been successful. KY has reduced the uninsured rate from 2013 to 2017 by 62% (Healthinsurance.org, 2020). OCSHCN regional offices, the Family to Family Health (F2F) Information Centers, and several LHDs have staff trained to facilitate customers accessing the exchange for enrollment. In other communities, they know the locations to send families for this service.

Title V continues to assist mothers and children with access to care. LHDs continue to work with pregnant women and families to assist with enrollment processes or linkage to KY Medicaid providers.

The 2015 Needs Assessment survey data showed that OCSHCN respondents are less likely than other MCH populations to experience problems obtaining insurance via the exchange. Subsequent OCSHCN surveys have indicated that OCSHCN enrollees are more satisfied with the adequacy of their child’s coverage than CYSHCN families sampled through the National Survey of Children’s Health (2018). OCSHCN contracts with a trusted nonprofit, Patient Services, Inc., to provide insurance case management and premium assistance solutions for those with eligible conditions, specifically bleeding disorders and cystic fibrosis. Insurance coverage is an issue among MCH populations and a disparity of adequacy exists in terms of CYSHCN. OCSHCN is working toward greater (appropriate) coverage by guiding and advocating for CYSHCN on an individual basis and on a state level, participating in ongoing dialogue with Medicaid and the MCOs to reach solutions for any issues (such as pre-authorization requirements for medical procedures from which CYSHCN may previously have been exempted). OCSHCN continues to participate in learning collaborative opportunities alongside Medicaid partners, state partners, and national experts.

State Health Agency Priorities

Sworn into office in December 2019, Governor Andy Beshear began his time advocating and working to improve healthcare access noting it is not a partisan issue. Since assuming the governorship, his efforts have been largely focused on best practice measures of keeping all Kentuckians safe during the world wide pandemic of COVID-19. He has held daily media outreach efforts promoting safety measures and emergency regulations impacting access to care, telehealth, and restrictions for safety measures.

In 2017, KDPH evaluated target areas of concern for the state to develop the state health plan. Stakeholders identified the focus needs to improve the health of Kentuckians, which include substance use disorder, tobacco use, obesity, adverse childhood experiences, and integration to health access. All of these have significant impact on mothers and children. With the rising opioid epidemic, a focus remains on decreasing the rates of neonatal abstinence syndrome, and Sudden Unexpected Infant Deaths (SUID), and on the increasing identification and treatment of pregnant woman with substance use disorder.

In 2018, KDPH began meeting with every local health department and stakeholders to address Public Health Transformation based on Public Health 3.0 principles. This transformation is working to address fiscal instability within local health departments, many of which face insolvency in one to two years. Public Health Transformation has set a goal to improve public health leadership, prevent duplication of services, and support data driven decisions to promote positive community health outcomes.

Challenges for Delivery of Services

Healthy People 2020 notes, “Achieving health equity requires valuing everyone equally with focused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and the elimination of health and health care disparities.” In KY, disparity affects all MCH indicators in areas of racial, ethnic, economic or geographic location, and access to care.

The US Census Bureau 2019 Population Estimates for KY is 4,467,673. KY’s population is 87.5% Caucasian, 8.5% African American, and 3.9% Hispanic. The poverty rate is 16.9%, and 41% of Kentuckians live in a rural area (United States Census Quick Facts, 2020).

Appalachian communities are unique and deserve special attention given the rural, resource-limited, socio-economically impoverished nature of families in this part of KY. This affects access to employment, health care, higher education, and other services. Limited access to local providers (especially for specialized care) and transportation are barriers imposed by a rural community. The rurality of the population created a need for communities to rely on LHDs for primary care and prevention services. With PH Transformation, LHDs are evaluating how to move from direct preventive exams and primary care services to population health preventive measures. Identified distressed counties correspond with higher indicators of poor health.

Social determinants of health (SDoH) for rural KY has large impacts on health outcomes as many are part of the highest poverty and at risk areas of KY. The Appalachian Regional Commission (ARC) monitors the economic status of Appalachian counties in all 13 Appalachian states. A designation of a “distressed county means” this area has a median family income no greater than 67% of the United States average and a poverty rate 150% of the US average or greater.

Per the ARC, there are 80 distressed counties in 13 states, with 38 counties located in eastern Kentucky with the next highest rate being 16 counties in West Virginia (Appalachian Regional Commission, 2020).

Health disparities are addressed by place based initiatives such as the Federal Healthy Start program in Louisville, Federally Qualified Health Centers (FQHCs) such as Bluegrass Community Health Center in Lexington that provides a medical home for migrant workers in Central KY, or other FQHCs in the eastern part of KY serving underserved populations with comprehensive services.

Illustrated in the Rural Healthcare Facilities map below, (Rural Health Information Hub, 2020), as of January 2020, KY has 28 Critical Access Hospitals, 252 Rural Health Clinics, 264 FQHCs outside of urbanized areas, 45 short term hospitals outside of urbanized areas(data.HRSA.gov, 2020). Through the KY Office of Rural Health, efforts are made for rural hospital improvement grants, and stabilization of the smallest and most vulnerable rural hospitals.

KY has three primarily urban areas: Louisville, Lexington, and Northern KY. Both Louisville and Lexington have a children’s hospital providing comprehensive pediatric care. KY has one specialty hospital, Shriners Hospital for Children, serving children (regardless of ability to pay) with orthopedic conditions. The number of providers in KY’s health program shortage areas (HPSA) are listed below:

State Statutes and Other Regulations Relevant to Title V Program Authority

KY Revised Statutes (KRS) and KY Administrative Regulations (KAR) of relevance to KY’s Title V program authority are described in this section to provide the basis for MCH programs and their required activities. These can be located at: KY Revised Statutes and Administrative Regulations.

• KRS 211.180 gives the CHFS the responsibility and authority to formulate, promote, establish, and execute policies, plans, and programs relating to all matters of public health. This KRS supports MCH population efforts. It states that the CHFS is responsible for “the protection and improvement of the health of expectant mothers, infants, preschool, and school-aged children” and “the protection and improvement of the health of the people through better nutrition.”
• KRS 211.180 authorizes MCH to protect and improve the health of expectant mothers. Decades ago the legislature provided funding to MCH with the intent that no pregnant woman in KY will go without prenatal care due to lack of ability to pay.
• 902 KAR 4:100 established the public health prenatal program to administer these funds and set the financial eligibility for those in need of prenatal care at 185% and below of the FPL who are not covered by Medicaid or any other funding source. The public health prenatal program serves as a core public health service and is the primary strategy for reducing maternal morbidity and mortality, and infant morbidity and mortality.
• KRS 211.755 stipulates that a mother may breastfeed her baby or express breast milk in any location, public or private, where the mother is otherwise authorized to be, this is in addition to the nutrition provisions in KRS 211.180.
• KRS 344.030-.10 prohibits employment discrimination in relation to an employee’s pregnancy, childbirth, and related medical conditions. It required reasonable accommodations for the employee and is the first lactation accommodation requirement in KY. This law became effective June 27, 2019.
• KRS 214.160 requires Hepatitis C screening for all pregnant women and to be documented in the infant’s medical record to assure the child receives serologic testing at the 24-month well-child exam.
• KRS 214.160 permits the provider to administer toxicology screening to the pregnant woman or infant after delivery if the provider has reason to believe there was prenatal exposure of newborn or that the mother used any substance for a nonmedical purpose. Positive toxicology findings shall be evaluated by the provider to determine if abuse or neglect of infant occurred and referred to DCBS as per KRS 600.020(1).
• KRS 344.030-.110 establishes the Pregnant Workers Act which prohibits discrimination to an employee for pregnancy, childbirth, or other related medical conditions and is the first lactation accommodation requirement in KY.
• KRS 214.155 requires Newborn Screening (NBS) and authorizes the NBS program to collect data for inborn errors of metabolism and other hereditary disorders and allows the state to add any conditions to the panel that are recommended by the American College of Medical Genetics. KY currently screens for 58 disorders.
• KRS 304.17 establishes the Metabolic Foods and Formula program to provide needed supplements and special foods to children with metabolic disorders as a payor of last resort. Medicaid and insurance companies are required to provide these for their enrolled patient population up to a cap of $25,000.
• KRS 211.645, 211.647, and 216.2970 established the Early Hearing Detection and Intervention Program (overseen by OCSHCN) which screens newborns for hearing loss prior to discharge from KY birthing hospitals.
• KRS 211.651 authorizes the KY Birth Surveillance Registry to obtain data on all children up to the age of five years with congenital anomalies or disabling conditions. Reporting sources include acute care hospitals, outpatient records, and laboratories.
• KRS 211.192 directs KDPH to make available up-to-date information on spina bifida.

• KRS 211.676 requires birthing hospitals to report all diagnosed NAS cases to KDPH.
• KRS 211.690 established HANDS as a voluntary home visitation for first-time, at risk parents as a primary service delivery strategy in 2000.
• 902 KAR 4:120 sets the definitions, eligibility criteria, and provider qualifications for the HANDS program.
• 907 KAR 3:140 established HANDS funding from the Master Tobacco Settlement and in accordance with Medicaid. Since 2011, the HANDS program has had federal support from the MIECHV grant.
• KRS 200.654 allows MCH, as part of the CHFS, to administer state and federal funds to the First Steps Program (Part C of the Individuals with Disabilities Education Act) to provide early intervention services for infants and toddlers with disabilities and their families.
• 902 KAR 30:150 defines First Step (Kentucky Early Intervention Services) provider qualifications.
• KRS 211.901 addresses the statewide Childhood Lead and Poisoning Prevention Program (CLPPP) for the prevention, screening, diagnosis, and treatment of lead poisoning.
  • KRS 211.900 defines at-risk populations for lead poisoning.
  • KRS 211.903 specifies the intervals of screening of at risk children.
  • KRS 211.904 states that the CHFS shall establish an educational program to inform of the multiple dangers, frequency, and sources of lead poisoning and the methods of preventing such poisoning.
• KRS 211.686 established the Public Health Local Child Fatality Review (CFR) Program in 1996. This statute allows local teams to assist the coroner in determining an accurate manner and cause of death.
• KRS 213.161 initiated grief counseling through LHDs for families who have lost an infant to Sudden Infant Death Syndrome (SIDS).
• KRS 211.686 was amended in 2018 to add Maternal Mortality Review to the child fatality review allowing for review of cases of maternal death to establish prevention activities and align with best practice guidelines as defined by the CDC. The legislation for child and maternal mortality protects against discoverability of review information.
• KRS 199.8945 establishes technical assistance for childcare providers through the Healthy Start in Child Care Program. This statute mandates training and education of child care providers in child health and safety to increase awareness and education for parents of children who attend child care.
• KRS 211.190 (11) requires CHFS to provide public health services that include water fluoridation programs for the protection of dental health.
  • 902 KAR 115:010 sets forth the requirements for the water fluoridation program. KY has the highest percentage of fluoridated water systems in the country, at 98%.
• KRS 313.040 created a special licensure category for Public Health Registered Dental Hygienists (RDH) that expands the scope of preventative dental work that the public health RDH can do without requiring the presence of a dentist on site.
• KRS 156.160 requires that all children entering public school have a dental assessment; while this is the responsibility of the KDE, the MCH State Dental Director provides training and technical assistance.
• KRS 156.501 establishes a full time position in the KDE for a school nurse consultant, to develop protocols for health procedures, quality improvement, and health data collection in schools. MCH funds half of this position and collaborates to develop guidance for health management in schools.
• KRS 200.460-200.499 established program authority for CYSHCN services. The authorizing statute reads in part: that OCSHCN “shall provide through contractual agreement, or otherwise, such services as may be necessary to locate, diagnose, treat, habilitate, or rehabilitate children with disabilities, and may include any necessary auxiliary services.” Remaining statutes address conditions of acceptance for children, payment for care, confidentiality of records, and reporting.
• KRS 438.345 added language to prohibit use of tobacco products by students, school personnel, and visitors in schools, school vehicles, properties, and activities; require policies to be in place by the 2020-2021 school year; require that smoke-free policies and signage be adopted; and provide that existing bans are not impacted.
• KRS 200.460-200.499 established program authority for CYSHCN services. The authorizing statute reads in part: that OCSHCN “shall provide through contractual agreement, or otherwise, such services as may be necessary to locate, diagnose, treat, habilitate, or rehabilitate children with disabilities, and may include any necessary auxiliary services.” Remaining statutes address conditions of acceptance for children, payment for care, confidentiality of records, and reporting.

In 2019, 3 new OCSHCN specific Kentucky Administrative Regulations (KAR) were enacted. The 3 new regulations cover application to clinical programs, billing and fees, and medical staff. The new KAR’s may be found at KY Administrative Regulations Title 911. The new KAR were created to provide transparency to the public regarding OC SHCN procedures.