NPM 11 – Medical Home: percent of children with and without special health care needs, ages 0 through 17, who have a medical home.

 

CSHS Staff and Programming

 

Children’s Special Health Services (CSHS) addressed NPM 11 by offering gap-filling programs, such as peer support services and resource coordination programs, to all children and their families in Montana. CSHS offered a variety of population health and direct service programs while collaborating with Children & Youth with Special Health Care Needs (CYSHCN) programs across DPHHS. Three CSHS Program Specialists (PS), a CSHS Nurse Consultant and the Title V CYSCHN Director/Section Supervisor, managed these CYSHCN focused programs: Cleft/Craniofacial Clinics; Statewide Genetics Program; Metabolic Clinics; Newborn Hearing Screening Program; and the Montana Access to Pediatric Psychiatry Network (MAPP-Net).

 

Through Title V Maternal & Child Health Block Grant (MCHBG) funding, CSHS supported initiatives to increase parent leaders and peer-to-peer support through the Family Peer Support program and Circle of Parents. Population-based initiatives were supported through the Transitions Project and Leadership High School Youth Peer Support.

 

Many staff transitions occurred in FFY23. Position turn over included: the CYSHCN Director/ Section Supervisor; Title V CYSHCN Program Specialist; CSHS Program Assistant; Nurse Consultant; and Newborn Hearing Screening Program Specialist. The CYSHCN Director/ Section Supervisor position was filled by the Newborn Hearing Screening Program Specialist, who brought 16 years of public health experience, eight of which were overseeing the Newborn Hearing Screening Program. The Title V CYSHCN Program Specialist was previously the CSHS Program Assistant. The Newborn Hearing Screening Program Specialist position was filled in the middle of July. Joint interviews for a Nurse Consultant took place with the Title V MCHBG Director, who was also filling a nurse consultant position.  

 

Growth within CSHS

 

CSHS worked towards implementing the HRSA framework to advance NPM 11 by prioritizing: family engagement; provider engagement; coordinated care; and systems building. These priority areas are all framed and guided by: a family-centered approach; diversity, equity, and inclusion; and evidence-based practices. These priority areas are the basis of the strategic plan and have continued to guide this section during FFY23 and FFY24. The programs that CSHS funds intersect with multiple priority areas. In this report, programs are organized by priority area based on FFY24 future plans and areas of growth.

 

Coordinated Care

 

In order to improve access to care coordination across our regional health systems, strategies must be employed to: support systematic improvements of care coordination; advance the Medical Home and National Standards of Care: and ensure that families remain engaged during care coordination. As a part of coordinated care, CSHS continued to provide peer support programs through MCHBG funded programs.

 

FFY23 Peer Support

 

The CSHS Family Peer Support Program experienced changes prior to the beginning of FFY 23. To address these changes, an RFP was issued in the summer of 2022. The purpose was to provide funding for family-centered peer support services that improve access to the medical home, and support CYSHCN families in navigating the system of care. This RFP allowed for applicants to address different levels of peer support to include: population, group, and individual peer support; versatility to approach peer support; and helped to identify new partners and collaborations within the state.

 

Current service providers were invited to respond to the RFP: the HALI/Montana Parent Partner Program, Circle of Parents, and the Medical Home Portal. Montana’s Peer Network (MPN), and the Early Childhood Coalition of Beaverhead County (ECCBC) Canvas Early Learning Center were the successful applicants and were awarded contracts that began on October 1, 2022. Quarterly, the CSHS staff met with MPN and ECCBC staff to ensure they were meeting contract deliverables, and to provide technical assistance as needed. Annually, their performance will be reviewed prior to contracts being renewed, under the terms of the RFP.  

 

During FFY23, the Family Peer Support Program, and Circle of Parents were employed to provide individual and group peer support.  Below are examples of programs and activities that incorporate care coordination, advance coordinated care, and work to decrease siloes within the healthcare system.

 

Family Peer Support Program through Montana’s Peer Network (MPN)

 

On October 1, 2022, Montana’s Peer Network (MPN) began providing individual peer services to families of CYSHCN across Montana for FFY23. The mission of MPN’s Family Division is to provide family peer support across the state for families of children with special health care needs such as those with developmental, intellectual, physical health, mental health, and substance use challenges. Prior to having a family division, MPN provided peer services solely to individuals in recovery. MPN continued the family peer support services began by the HALI Project, whose contract ended September 20, 2022. To ease this transition, the CEO of the HALI Project, Brad Thompson provided technical assistance to MPN.

 

In the beginning of FFY23, MPN employed four Family Peer Supporters, at three clinic locations: Butte, Billings and Helena. Throughout FFY23, MPN faced turnover of the Family Peer Supporter in Butte leaving only three Family Peer Supporters in Billings and Helena. In FFY23, MPN served 235 distinct clients in 1,675 different encounters; offering valuable support, encouragement, and hope to families. Types of encounters included a phone call to provide support, an in-person conversation about resources, or a simple referral to other programs.

 

The number of distinct clients served by MPN in FFY23 was more than the number of distinct clients served by the HALI Project in FFY22. One explanation is the Family Peer Supporters that carried over from the HALI project, as they sustained old connections and were able to make new ones. Also, MPN is a well-established organization in Montana providing peer services. Another reason is reduction of restrictions from the COVID-19 pandemic in this fiscal year caused there to be less limitations, allowing Supporters to enhance their connections even further. MPN is eligible for renewal for seven years, pending positive outcomes and value of support.

 

Circle of Parents (CoP)

 

Circle of Parents (CoP) is a support group program modeled after the national Circle of Parents Train the Trainer model. The CoP aims to decrease isolation, prevent child abuse and neglect, and strengthen families through free monthly caregiver support groups. One unique component of CoP is that it is parent led, and each group was provided a stipend to assist in offering a supportive environment with a free meal and free childcare for families. CoP groups varied based on location and identified community need, some of which included: families with CYSHCN or Mental Health Concerns; Foster Families, and Postpartum Mental Health concerns.

 

The Early Childhood Coalition of Beaverhead County (ECCBC) is the contractor for this program. In FFY23, eight different groups met in one of these locations: Butte, Missoula, Great Falls, Dillon, Havre, Mineral County, and Big Horn. For context, in October of 2022, eight adults and 12 children attended a meeting in Dillon, while seven adults and four children attended a meeting in Butte. This reflects how each meeting location tends to have different attendance rates, based on the needs of the communities. ECCBC is focused on increasing the number of groups to 12 in FFY24. 

 

Youth Peer Support

 

CSHS engaged in a new Youth Peer Support project by partnering with the Great Falls Area Chamber of Commerce (GFACC) Leadership High School (LHS) program. This program has been present in Great Falls schools and the surrounding areas for over 15 years. Interested high school students were selected from a competitive application process to ensure that they would be successful as a peer mentor.

 

The CSHS Youth Peer Support project matched a LHS student with a student with special needs enrolled in the Great Falls Public School (GFPS) system or living in the community. The peer match is required to meet at a minimum once per month and complete a survey upon the conclusion of their monthly activity. 

 

The preparatory work for the CSHS Youth Peer Support project began at the start of 2023 with conversations between the GFACC and CSHS MCHBG Program Specialist. Additional conversations have occurred with the GFPS Special Education Department to ensure that the peer match is with a student with special needs.  Additionally, CSHS staff have developed an evaluation plan that consists of multiple surveys involving the contractor, the peer advisors, and the peers themselves. The Youth Peer Support program aims to help the special education student reach transition goals as it relates to NPM 11, and increase exposure of youth peer support to LHS students. The data collected from the evaluation plan will help CSHS understand the impact and outcomes of the program and inform potential expansion of the program to other communities in Montana to make it as successful and as family-friendly as possible. 

 

Provider Engagement

 

Provider engagement is a continued area where CSHS sees value in creating bi-directional relationships with providers statewide. Through alignment with contracts and relationship-building across the state, this was a continued priority for CSHS for creating a positive impact to the medical homes of CYSHCN.

 

The MAPP-Net program has a foundation of provider engagement. Provider participation is instilled in every facet of programming, including Project ECHO sessions, the access line, and the annual Pediatric Mental Healthcare Symposium. MAPP-Net continued to recruit provider participation in Project ECHOs, which are bi-monthly didactic sessions that focus on behavioral health topics, which are distributed to providers in the network.

 

MAPP-Net also staffs an access line for primary care and behavioral health providers to use for consultation on pediatric mental healthcare cases. Program staff maintain efforts year-long to increase access line utilization, through community outreach statewide and engagement with relevant community-based nonprofits and healthcare facilities.

 

In addition, MAPP-Net has a yearly Pediatric Mental Healthcare Symposium that is accredited for behavioral health, nursing, and medical education CE credits. MAPP-Net also engaged with state chapters of national professional organizations, including the American Academy of Family Physicians (AAFP) and American Academy of Pediatrics (AAP), and worked with the national chapters to be awarded funding for collaborative curriculum development and sustainability planning.

 

Montana planned a half-day conference and training for pediatric providers of children with complex medical conditions in collaboration with the Montana Chapter of the American Academy of Pediatrics. The conference was focused on the care of children with special health needs, with the aim of improving provider confidence in caring for this patient population. The theme for this year’s special needs pre-conference was transition from NICU/inpatient to the outpatient setting and featured a hands-on skills session on G-Tube and pump management, a family panel, and two guest speakers. This conference was held October 6, 2023.

 

University of Montana Rural Institute for Inclusive Communities (UMRIIC): Care Coordination Academy & Transitions

 

CSHS continued to partner with UMRIIC to provide evidence-based transition resources to Montana’s youth and families. This program worked to: maintain and expand the 15-member Consumer Advisory Council (CAC); maintain and disseminate a health care transition (HCT) guide; develop evidence-based/informed HCT training and resource materials; conduct distance learning opportunities; maintain a transition website; and provide technical assistance to other initiatives related to HCT. Project staff continued to disseminate this information via the Transition and Employment Projects website (https://transition.ruralinstitute.umt.edu/), which was reviewed and updated quarterly.

 

Family Engagement

 

CSHS prioritized family engagement this fiscal year through finding opportunities to elevate family voices in their work with stakeholders and providers. The Newborn Screening Program utilized family engagement of Deaf/ Hard of Hearing (D/HH) children and their families by partnering with MT Hands and Voices to hold family community events and trainings. CSHS also contracted with the Montana School for the Deaf and Blind to provide a Deaf Mentor Program throughout the state.

 

Montana is inclusive of family voice in decision-making whenever possible. Parents sat on the Consumer Advisory Council for the Transition program, the Newborn Screening Advisory Committee, and the Financial Assistance Program committee. A family panel was convened to present at the half day Pediatric Complex Care Needs conference in October 2023.

 

Family to Family Health Information Center (F2F):  Title V MCHBG Family Delegate

 

The Title V MCHBG Family Delegate position is integrated into the F2F Center, and on July 1, 2022, it became a contracted position. The contract defined the Family Delegate’s job responsibilities and duties; and compensates them for their work. The Family Delegate advises on CSHS policy and supports resource navigation and program alignment. The Family Delegate also supported other CSHS programs by participating in work groups, advising on policies and programs, and supporting outreach to families.

 

CSHS made an effort to have more accessible programs in FFY23. Accessibility is a large focus of CSHS, as being family-friendly is the primary focus of the section. In this case, accessibility means products, devices, services, or environments are available to as many people as possible. For example: always having closed captioning on in virtual meetings for those that may be D/HH or describing physical appearance in virtual or in-person settings to be inclusive of all attendees, including those that may be blind or low-vision. One example of this commitment to accessibility was the inclusion of the Family Delegate into the Pediatric Mental Health Symposium Planning Committee for FFY23.

 

The Family Delegate was a key factor in helping with accessibility measures, as they have lived experience with a child with special healthcare needs. The Family Delegate was able to assist CSHS in making the 2023 MAPP-Net symposium as accessible as possible, and also helped to organize a parent panel where parents were able to share their stories and struggles with access to mental health care for their children in the state of Montana. The Family Delegate organized a virtual meeting prior to the conference for the parents to meet and get comfortable. She also helped put together the questions that parents were asked, to make them family-friendly and mindful of what the parents may have experienced that they were willing to share.

 

Financial Assistance Program (FAP): Direct assistance to CYSHCN

 

The CSHS Financial Assistance Program (FAP) continued to provide assistance to qualifying families. The FAP helps to cover out-of-pocket expenses for medical and enabling services, such as: therapeutic services; occupational therapy items; adaptive equipment; and respite care. Qualifying families continued to be eligible to receive up to $2000 per federal fiscal year, per child.

 

All FAP applications were screened by the FAP committee, which is comprised of: the Title V MCHBG Family Delegate; two staff from the Family-to-Family Health Information Center; and three staff from DPHHS. In instances where funding was not awarded, the committee compiled resources, and reached out to partners like Medicaid and Part C, to redirect the applicants to other available resources. Future FAP plans include continuing to utilize the review committee with a focus on outreach, referral, and resource navigation. CSHS also continued to operate the genetics financial assistance program in FFY23. This program provides financial assistance to CYSHCN who are seeking genetic testing, as the price of genetic tests can be a barrier to access. 

 

CSHS partnered with MonTECH, within UMRIIC, to support their ability to purchase assistive equipment and adaptive technology for their lending library with items specifically needed for families of CYSHCN. Some additional areas of collaboration being discussed included the Montana Mother’s Milk Bank of Montana, WIC, and the Office of Public Instruction.  

 

Systems-Building

 

CSHS worked to improve relationships and build collaborative partnerships to strengthen systems in all programs. Some examples of this work include:

 

• Partnering with Medicaid and EPSDT staff when questions or clarifications arose through the FAP. CSHS does not have Medicaid or EPSDT staff on the committee currently but continued to explore that option. Through collaboration with Medicaid and Blue Cross Blue Shield, CSHS was able to educate providers and families on Medicaid policies and bring attention to gaps in the plan of benefits.
• Participation by CSHS staff in DPHHS and regional committees to represent CYSHCN standards of care and clinical needs.
• Established a quarterly inter-departmental meeting across DPHHS middle management, each involved with children’s systems of care. This quarterly meeting included staff from Medicaid, the Behavioral Health & Developmental Disabilities Division, Part C Prevention and Early Intervention, and the Head Start Collaboration Director. The meetings were an opportunity to share information and identify areas of collaboration. Information from these meetings was shared with our respective stakeholders.

 

Other CSHS Programs

 

The CYSHCN Title V Director/CSHS Section Supervisor oversaw these programs: Newborn Hearing Screening, a statewide genetics program, metabolic clinics, and the Montana Access to Pediatric Psychiatry Network (MAPP-Net). These CSHS Programs support the advancement of medical homes for CYSHCN and their families and align with National Standards for Systems of Care for CYSHCN.  Further details are available at: http://www.amchp.org/programsandtopics/CYSHCN/.

 

All MAPP-Net activities aimed to support CYSHCN medical homes by strengthening the primary care provider’s knowledge and access to psychiatry resources. In FFY23, MAPP-Net sustained Project ECHO clinics, an access line for providers, and sponsored the fourth annual Symposium of Pediatric Mental Health. The main goal of the Project ECHO clinics is to provide a space for providers to learn more about resources and discuss case studies as related to the ECHO topic. In FFY23, Project ECHO clinics continued to be regularly scheduled with limited COVID regulations in place. Attendance per clinic continued to decrease, and CSHS is reviewing and assessing data on clients.

 

In FFY 23, MAPP-Net also undertook two needs assessment projects, conducted by the UMRIIC evaluation team. The needs assessments will inform activities for FFY24 and beyond. One needs assessment focused on understanding the service gaps and care needs for Montana youth who identify as LGBTQI, who experience homelessness or who are Native American. The second needs assessment project was an analysis of the utilization of the access line, with recommendations on how to increase adoption of the tool.

 

In SFY23, CSHS contracted with Yarrow, LLC, a Public Health Consulting Agency, to conduct the CSHS Cleft/Craniofacial Specialty Clinic Needs Assessment. This project assessed the services that are needed by CYSHCN and their families. The needs assessment analysis indicated that Montana’s CYSCHN population and their families would benefit from a new system of care for the cleft/craniofacial clinics. The results informed a solicitation for proposals from healthcare systems.

 

CSHS and the Metabolic Newborn Screening Program, housed in the DPHHS Public Health Laboratory, continued managing the Newborn Screening Advisory Committee (NSAC). This committee was established by House Bill 423, passed by the 2021 Montana Legislature. The NSAC meetings are attended by healthcare providers, payers, families, advocacy agencies, Tribal Health and legislators. In 2022, the NSAC met on April 19 and December 21. In 2023, they met April 6 and June 29. The NSAC declined to include Krabbe on the required screening and will determine if x-ALD will be included when the Committee meets in the fall of 2023. The committee meetings are an opportunity for the CSHS staff to expand their outreach to include the NSAC members and their partners. Access to medical home is a consideration for conditions to include on the newborn screening panel.

 

The contract with Shodair Children’s Hospital was overseen by the CSHS Section Supervisor while the Nurse Consultant position was vacant in FFY23. Shodair Children's Hospital provides clinical genetic and metabolic services to individuals or family members who are affected by or are at risk of developing a genetic or metabolic disorder.

 

CSHS continued to uphold the values and standards of NPM 11 through various programs and initiatives. There will continue to be innovation throughout this section to expand the work occurring across the state. The focus will continue to be improving the quality of life for children and youth with special healthcare needs.