To minimize special health needs/disabilities, a system of care must be in place for early identification and referral to early intervention services. The Maine CDC’s Children with Special Health Needs (CSHN) Program is home to three early identification programs: newborn hearing screening, newborn bloodspot screening and birth defects surveillance. State statute mandates each of these programs to refer all confirmed cases to the Department of Education’s Child Development Services (CDS) Program, Maine’s Part C and B Programs. Maine defines children with special health care needs as children who have a congenital or acquired chronic disease, condition and/or physical disability, unless otherwise specified, that interferes with effective functioning and requires subspecialty intervention. Maine’s statute allows for services for CSHN through age 21.

To build cross-system collaboration, the CSHN Program facilitates several advisory boards, all with diverse membership, including families. Advisory boards include the Newborn Hearing Advisory Board, mandated by state statute. Membership includes audiologists, speech therapists, midwives, prevention and intervention staff, as well as members who are culturally deaf, hard of hearing, parents of a culturally deaf child and parents of a hearing child. Other representatives include health insurance carriers, CDS and Maine Department of Health and Human Services (Maine DHHS).

The Newborn Screening Joint Advisory Committee is also mandated by State statute. The Committee’s purpose is to ensure that the policies and programs offered by the Newborn Bloodspot Screening Program improve the health and well-being of those individuals identified with certain suspected and confirmed disorders of metabolism, endocrinology, hematology, pulmonology and immunology are appropriate and effective. Membership includes representatives from the community, professional organizations and non-profit groups that support health issues of newborns; children and their families may also be included as members. At least four consumers, public health nursing, a social worker, a practicing pediatrician, pediatric specialists with expertise in the diseases being screened for or under consideration for screening, a registered dietitian, a neonatologist, a medical ethicist, a birthing hospital nurse, a birthing hospital quality assurance professional and a genetic counselor are also members.

Other efforts to build cross-system collaboration between the CSHN program and other programs and organizations include MaineCare, Office of Child and Family Services (OCFS), other Maine CDC programs such as Public Health Nursing and WIC. The CSHN program works closely with CDS and the Maine Department of Education (Maine DOE). The CSHN Director serves as a board member on the Maine Developmental Disabilities Council (DD Council).

Recognizing that the system is complex the CSHN Program contracts with two agencies to assist families as they navigate the system of services. The Maine Parent Federation (MPF) provides information, referral, one on one support and training to parents of children with disabilities/special health care needs and the professionals that work with them. MPF’s Family Support Navigator Program is designed to connect families to a network of supports, services and information at the local, state and national level.

Data from the National Survey of Children’s Health (NSCH) are used to describe the prevalence and demographic characteristics of children with special health care needs (CSHCN) living in Maine, as well as, their health and functional status and need for and access to services. These data are used to track Maine’s efforts to improve transition to adult health care. Nearly one in four Maine children (23.6%) has a special health care need. This translates into approximately 58,000 children with special health care needs living in Maine. Based on the 2019-2020 NSCH, Maine ranked 2nd highest in the U.S. in the percentage of CSHCN behind New Hampshire.

In 2019-2020, 5.3% of children met the criteria for a having a special health care need due to having a functional limitation; 7,2% had a prescription medication only; 4.9% had above routine use of specialized services only; and 6.2% had a prescription medication and used above routine use of specialized services. One in 6 (16%) Maine CSHCN had their daily activities consistently affected by their condition; another 62% had their daily activities moderately affected some of the time.

Data from the National Survey of Children’s Health (NSCH) are used to describe the prevalence and demographic characteristics of children with special health care needs (CSHCN) living in Maine, as well as, their health and functional status and need for and access to services. These data are used to track Maine’s efforts to improve transition to adult health care. Nearly one in four Maine children (23%) has a special health care need. This translates into approximately 57,000 children with special health care needs living in Maine. Based on the 2018-2019 NSCH, Maine ranked fourth highest in the U.S. in the percentage of CSHCN.

Priority: Support adolescents with special health care needs transition to adult care.

Performance Measure: Percent of adolescents with and without special health care needs, ages 12 through 17, who received services necessary to make transitions to adult health care.

Youth with special health care needs should discuss their changing health care needs with providers as they transition into adulthood. The Maternal Child Health Bureau states that; “health care services must not only be delivered in a family-centered manner but must prepare individuals to take charge of their own health and to lead a productive life as they choose”.[1]

In 2019-2020, parents of 24.9% of Maine CSHCN ages 12–17 reported that their adolescent received services to assist with transition; this is about the same as the national figure of 22.5%. Among non-CSHCN parents, 35.7% reported that their child received services necessary for transition; this is significantly higher than the national average of 17.6%. Maine’s overall percentage on this measure (32.3%) was the highest in the U.S. in 2018-2019; Maine ranked 22nd on this measure among CSHCN. An examination of the components of transition indicates that Maine providers could improve transition for youth by working more with youth to help them better understand how their health care changes when they reach age 18, including the need to shift to adult health care.

Data Source: 2019-2020 National Survey of Children’s Health

Strategy: Build provider awareness of importance of purposefully transitioning CSHN adolescent medical care to adult care

Transitioning from childhood to adulthood includes moving into the adult health care system and is an important step for CSHN. Staff redeployment, during FY21, to assist with COVID-19 related activities, presented challenges in making progress on action plan implementation. The CSHN Care Coordinator, the primary point of contact for families seeking services through the State Health Department, works with families to answer their questions and assists parents in navigating the systems of services. The Care Coordinator works closely with the Maine Parent Federation (MPF) and refers families needing assistance with more complex issues.

The CSHN program continued to research and review existing evidence-based health care transition tools however was unsuccessful in selecting one for use with pediatric providers to build provider awareness of the importance of purposefully transitioning adolescent CSHN to adult medical care. Anecdotally we learned that providers do not always have time during visits to address transition with their patients.

The CSHN Program made progress on our selected ESM; # of families of 15-17-year-olds with special health care needs who attend the Supported Decision-Making class. MPF held four virtual trainings comprised of 65 families and 45 providers. Due to the pandemic trainings were only offered virtually. The virtual option provided an opportunity for more parents to attend as they did not have to concerned about childcare or transportation. This resulted in Maine exceeding our objective of five.

Strategy: Increase collaboration between Medicaid and Title V

In the fall of 2020, the Office of Maine Care Services filled their vacant Early and Periodic Screening, Diagnosis and Treatment (EPSDT) Coordinator position. The Coordinator is responsible for promoting and supporting Maine’s EPSDT benefit of comprehensive and preventive health care services for children under the age of 21. This is primarily accomplished through planning, organizing, coordinating and overseeing EPSDT-related outreach and program reporting and evaluation to ensure compliance with program requirements. The EPSDT Coordinator focus is on children’s access to necessary screening and treatment services and works to create policy responsive to the needs of MaineCare members and providers as guided by best practice, data analysis, and stakeholder feedback.

With the CSHN Care Coordinator redeployed to assist with COVID-19 activities, we did not make significant progress on researching and selecting evidence-based readiness assessments for use by pediatric providers. Four meetings were held with the EPSDT program (housed within the Office of MaineCare Services) focused on updating the EPSDT program on Maine’s MCH activities, creating a draft EPSDT Prior Approval Decision Flowchart for providers and a draft transition checklist.

The CSHN Care Coordinator and EPSDT program lead began meeting during FY21 to identify state agencies and stakeholders to develop strategies to incorporate readiness assessments into well visits.

Priority: Improve care coordination for children and families with special health care needs.

Performance Measure (SPM): Percent of children with special health care needs who receive effective care coordination, among those who need it.

Strategy: Increase provider awareness of available care coordination resources

When Maine Title V staff examined the components of having a medical home using data from the NSCH, it was clear that to increase the proportion of children who receive care within a medical home, Maine needs to provide more effective care coordination, especially among children with special health care needs. In 2019-2020, only about 61% of parents of Maine CSHN reported that their children received effective care coordination when needed. Maine ranks 35th on this measure.

Data Source: 2019-2020 National Survey of Children’s Health

FY21 presented challenges with staff redeployment to assist with COVID-19 related activities. The CSHN Care Coordinator redeployment caused some delays in making progress on action plan implementation. The CSHN program continued to work with specialty clinics in resolving issues that create gaps in coverage for CSHN; 100% successful.

The CSHN Care Coordinator created and disseminated a PowerPoint presentation to 17 pediatric practices, representing 62 providers, to increase awareness of available care coordination resources. The presentation was made available on the Maine CSHN Care Coordination website https://www.maine.gov/dhhs/mecdc/population-health/mch/cshn/care-coordination/Care%20Coordination%209.17%20FINAL.pdf to increase awareness of available resources.

Strategy: Increase access to care coordination for families

To increase access to care coordination for families, the CSHN program continued to work with the MPF family support navigators to conduct outreach calls, respond to family needs and assist in development of a family satisfaction survey.

The MPF’s Family Support Navigator (FSN) program is a peer-to-peer program which provides one to one assistance to families of children with special healthcare needs. The program is staffed by four full-time equivalents who coordinate FSN trainings and connections to families. FSNs are parents of children with special healthcare needs, professionals working with families who have children with special healthcare needs or a relative to a child with special healthcare needs. FSNs are matched to families who have needs within a FSN’s geographic region, as well as lived experience. There are currently 18 active FSN’s in Maine. The FSN program provided peer-to-peer support and assisted 2,296 families, 5,064 providers, and 46 youth during FY21. The types of assistance most often provided by Family Support Navigators were related to autism, ADD/ADHD (attention deficit disorder/attention deficit hyperactivity disorder), down’s syndrome, learning disabilities and speech delay.

The FSN program is the most widely used resource of the MPF as it fulfills the need of true care coordination for parents of children with special health care needs. Routine program surveying illustrated 96% satisfaction with FSN services and 100% of families indicating they would recommend the program to family and friends.

The CSHN Care Coordinator worked with organizations and groups such as Genetics Clinics, MaineCare, EPSDT, Maine’s Collaborative for Care of Children with Serious Illness, and Maine Behavioral Healthcare to increase access to care coordination for families. In addition, the care coordination website with additional resources for families was updated. The website (https://www.maine.gov/dhhs/mecdc/population-health/mch/cshn/care-coordination/resources.html ) has a direct link to the Maine Parent Federation website for additional family resources.

The CSHN Care Coordinator also continued to assist with MaineCare payment issues for children in need of services by working with the EPSDT Coordinator, MaineCare Pharmacy as well as the MaineCare Provider Relations Team. Families connected to the program were assisted in resolving transportation and lodging issues to access necessary medical care appointments; continued to educate families on how to use the services; and worked with primary care provider offices to arrange transportation for families.

[1] U.S. Department of Health and Human Services, Human Resources and Services Administration, Maternal and Child Health Bureau. Achieving and Measuring Success: A National Agenda for Children with Special Health Care Needs. Available from: http://mchb.hrsa.gov/programs/specialneeds/measuresuccess.htm