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 CDCs 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 Program, Maine’s Part C and B Programs. Maine defines a child 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 clients through age 21.

To build cross-system collaboration, the CSHN Program facilitates multiple 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, Child Development Services (CDS) and Maine Department of Health and Human Services (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 who have 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.

A representative from the CSHN team participates on the Developmental Systems Integration (DSI) Team. DSI’s primary focus is to improve health care for children ages birth through three years through the expansion of developmental screening. Members include representatives from the medical and social services community as well as MaineCare, Maine CDC and the Office of Child and Family Services (OCFS).

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

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 (since 1984). 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. There are approximately 25 navigators’ statewide providing services; to date they have worked with more than 100 families. Issues identified by families include: special education and appropriate service based on evaluations; working parents with disabilities (behavioral or emotional) who have children with special health care needs and navigating the system for their child and themselves; and, healthcare – locating medical care and understanding results.

The CSHN Partners in Care Coordination Program seeks to help families navigate the system of care by linking them with other state and community level agency families, solving Medicaid or other private insurer issues, and providing a confidential ear to families.

Data from the 2016-2017 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 increase the percentage of CSHCN who receive care in a medical home and services to improve transition to adult health care.

Nearly one in four Maine children (23.0%) has a special health care need. This translates into approximately 58,000 children with special health care needs living in Maine. Based on the 2016-2017 NSCH, Maine ranked seventh in the U.S. in the percentage of CSHCN.

In 2016-2017, 6.4% of children met the criteria for a having a special health care need due to having a functional limitation; 6% had a prescription medication only; 4.5% had above routine use of specialized services only; and 6.5% had a prescription medication and used above routine use of specialized services. In 2016-2017, one in three (31%) Maine CSHCN had one functional difficulty and 38% had two or more functional limitations. One in 8 (12%) Maine CSHCN had their daily activities consistently affected by their condition; another 35% had their daily activities moderately affected some of the time.

Medical Home

The American Academy of Pediatrics defines a medical home as, “primary care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate and culturally effective.”[i] About half (48%) of Maine CSHCN had a medical home in 2016-2017; 58% of non-CSHCN reported receiving care within a medical home. Children with special health care needs who have more complex health needs are less likely to receive care in a medical home compared to non-CSHCN and CSHCN with less complex health needs. The chart below highlights the components of the NSCH used to measure medical home. Areas for improvement, especially for CSHCN, include getting referrals when needed, having effective care coordination, and allowing families to partner in shared decision-making.

Data Source: 2016-2017 National Survey of Children’s Health

The MPF is focusing on building stronger relationships with provider offices to provide technical assistance on engagement activities including improving the office environment, the office visit and referrals for supports for families. Efforts are underway to gain access to provider offices to share the services MPF can provide to families of CSHN including availability of parent navigators. The MPF’s work can help improve care coordination for parents of CSHN.

Parent navigators support families in their interactions with schools around the child’s Individualized Education Plan, provide guidance on completing Supplemental Security Income applications and MaineCare applications. The navigators also educate families on advocating for their child’s needs.

The MPF works closely with the Gaining Empowerment Allows Results (G.E.A.R.) Parent Network, an organization that focuses on the behavioral health needs of children including CSHN.

The MPF also conducts numerous workshops during the year on such topics as Transition, Individualized Education Plan, Becoming an Advocate, Bullying, and Challenging Behaviors.

The MPF consulted on the Maine Quality Counts, Collaborative ADHD Learning in Maine (CALM) Initiative, (12 pediatric primary care practices across Maine) working with primary care practices when a child receives a diagnosis of ADD/ADHD. The MPF attended leadership meetings, learning sessions, participated in the development of an online learning module, and provided guidance to practices on communication to parents/caregivers. The MPF is hopeful that through this outreach it can partner with practices in offering the peer to peer family support navigator program.

The Maine Developmental Disabilities Council (MDDC) funded Maine Quality Counts (QC) to develop and administer a care coordination survey to gather information on the current landscape of care coordination in Maine. Using the survey results, QC generated a report outlining the types of care coordination by agency, targeted population and whether, or not a standardized training curriculum is in place.

With the support of the MDDC, a diverse stakeholder group gathered at Maine Medical Association to participate in a simulated coordination training focused on effective referrals and closing the loop to ensure full execution of the referral. Sixty-eight medical professionals participated in the training. In addition, the Maine CDC contracted with a vendor to develop three modules to train care coordinators in multiple sectors. The MDDC participated in a taskforce to develop care coordination training and webinars.

Current Efforts

To ensure all children and youth with and without special health care needs have access to a medical home the CSHN Program partners with the MPF. The MPF provides education and support to adolescents with special health needs and their parents on medical home, partners with Maine Quality Counts (QC) to educate pediatric providers about a medical home and provides technical assistance regarding implementation of medical home.

To assure that Maine’s families of children with special health care needs partner in decision-making at all levels and are satisfied with the services they receive, the CSHN program replaced the current ESM; number of practices receiving technical assistance from Maine Parent Federation family support navigators with a new ESM; number of families who receive peer-to-peer support from the Maine Parent Federation. Families with children with special health care needs can benefit from support from peers who have navigated through difficult systems. These navigators can help families advocate for patient-centered care and shared decision-making within the primary care setting, and assist them with obtaining needed care coordination.

The MPF participates in the Maine Quality Counts CALM Initiative, an effort of the Maine AAP to elevate the health of children by improving the screening, diagnosis, and treatment for Attention Deficit and Hyperactivity Disorder (ADHD). The MPF attends learning sessions, leadership meetings, participates in the development of an online learning module and provides guidance to practices around communication to parents/caregivers. Twelve pediatric primary care practices across Maine are participating in this initiative.

Using the results from the QC, Developmental Systems Integration /Help Me Grow Care Coordination Report and Substance Abuse and Mental Health Services Administration guidance on care coordination, QC further defined a list of core competencies that care coordinators should have in their toolkit as well as linked those core competencies to the content for the three care coordination modules. Following is the list.

Transition to Adult Services

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”.[ii]

In 2016-2017, parents of 28% of Maine CSHCN ages 12–17 reported that their adolescent received services to assist with transition; this is significantly higher than the national figure of 16.7%. Among non-CSHCN parents, 30% reported that their child received services necessary for transition; this is also higher than the national average of 13.9%. Maine’s overall percentage on this measure (29.7%) was the highest in the U.S. in 2016-2017; Maine ranked 4th on this measure among CSHCN.

The success of youth with special health care needs to transition to adulthood is dependent on numerous agencies across state government. Each of these agencies has its own set of federal or state statutes that specify transition from one agency to another, the responsible party, at what age transition should take place, as well as a host of other policies and procedures. A review of current state statutes reveals the following rules and/or statutes that relate to transition: Department of Health and Human Services - eight statutes, Department of Labor - two statutes, and the Department of Education - six statutes.

The Maine Developmental Disabilities Council (MDDC) is a key stakeholder in the state advocating for children with special health care needs. In its’ efforts to improve transition to adult healthcare MDDC surveyed medical practitioners to increase awareness of the issue and gain their assistance in helping to transition children. The MDDC contracted with the American Academy of Pediatrics, Maine Chapter (Maine AAP) to conduct four focus groups and survey pediatricians about their understanding around transitioning an adolescent/young adult from the pediatric medical home to an adult practice. Results revealed that as many as 80% of pediatricians recognized that transitioning to adult healthcare was a major issue. The response demonstrates progress, as in 2015, the majority of pediatricians did not think that assisting patients with transition to adult healthcare was their role. This suggests that three years of providing information to doctors about transition has made an impact even though only 10% stated they knew how to successfully make that transition. Twenty-eight percent of respondents believe that there is a critical need for technical assistance and the need for adjustments in their practice to make transitioning to adult healthcare more successful for their patients. 86% of respondents did not feel confident that they knew what changes needed to be made and how to make the change.

As a direct result of MDDC efforts, the CSHN Program contracted with Maine Quality Counts to convene a Transitions of Care Planning Committee to develop measures for future quality improvement efforts and develop a small pilot around care transition.

The MDDC presented on transitioning to adult healthcare to 39 medical practitioners’ and 165 medical practitioners visited the MDDC exhibit at the annual American Academy of Pediatrics, Maine Chapter annual conference.

Maine Parent Federation partnered with the G.E.A.R. Parent Network in March 2018 to offer a “Families and Youth in Transition Conference” for the families of youth and youth ages 14 and older with emotional and behavioral health needs, special needs, and special health care needs who are transitioning from high school to adult life. MPF offered two tracks to families:

1. The Parent/Caregiver Track featured sessions focused on Transition Planning for High School, Self-Care for Caregivers through Transitioning, and a Transitions Panel Discussion.
2. The Youth Track featured sessions focused on Vocational Rehabilitation, Youth Peer Support, and a two-part symposium on Self-Advocacy and the Legislative process.

During FY18, the MPF brought two young college students, both CSHN, on staff to work with youth on transition to adult care. Following is a link to the advocacy workshop conducted by the students for youth;

https://m.youtube.com/watch?v=b2wKd0WYuOY. Maine Parent Federation held ten workshops; 310 students and 50 professionals participated. One of the students is responsible for the MPF Community Mapping Resource Project, which can be found at: http://mpf.org/map.html .

The MPF continued to provide the Transition Guide (High School and Beyond – A Guide to Transition Services in Maine) to all parents who called and inquired about transition, during their Transition workshops, Youth Self-Advocacy workshops, Transition Resource Fairs and at the March 2018 Conference on Transition. MPF provided 113 guides during FY18. The higher number resulted from increased attendance of youth at resource fairs and fresh outreach providing the self-advocacy workshop to providers. The guide is located at: (https://umaine.edu/autisminstitute/resources/maine-family-resources/transition-to-adulthood/).

Current Efforts

Maine Parent Federation continues to disseminate the Transition Guide. The MPF provides the guide to all parents who inquire about transition, at transition workshops, youth self-advocacy workshops, transition resource fairs and the Conference on Transition.

[i] American Academy of Pediatrics. Children’s Health Topic; Children with Special Health Care Needs. Available from: http://www.aap.org/healthtopics/specialneeds.cfm

[ii] 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