The Family & Community Health Bureau’s (FCHB’s) Children’s Special Health Services Section (CSHS) and Maternal and Child Health Coordination Section (MCHC) are primarily responsible for ensuring that Title V MCHBG input is solicited from Montana’s families and consumers.  Family and consumer feedback and involvement are sought directly from surveys or participation at meetings. When feasible, their input is included in the State Action Plan objectives, goals, and activities. Family and consumer insights are also received from contractors working with the maternal and child population. CSHS contracts with family-led organizations to provide services and solicits their input on programs and initiatives.

CSHS's vision is to increase family and youth voice in program decisions. CSHS initiated several strategies to increase family voice in programs in FFY22, which have been implemented in FFY23. These strategies include:

• Implementation of a contract with the Family to Family Health Information Centers (F2FHIC) for the AMCHP Family Delegate position, held by Tarra Thomas. This position is embedded within the F2FHIC. Two substantive changes to this contract include compensation for the Family Delegate position and a clear scope of responsibilities related to CSHS programs. This contract started July 1, 2022, and ends September 30, 2023, with potential for continuation. CSHS anticipates this contract to be continued.
• Working on special projects in collaboration with F2FHIC to advance the voice of families and address critical needs. Two examples that began in FFY22 and extended into FFY23 include: a pediatric mental health family panel held at the Montana Access to Pediatric Psychiatry Network Annual Symposium, and planning a family panel for a half-day training for providers, on transitions related to complex care patients. These transitions include hospital-to-home, and NICU- (Neonatal Intensive Care Unit) to-home.

Examples of parent engagement across MCHBG/CSHS programming: 

• Family and consumer input were received from the Universal Newborn Hearing Screening and Intervention (UNHSI) Coordinator, who is working with two family-based organizations: the Montana School for the Deaf and Blind (MSDB) and MT Hands and Voices (H&V). They are contracted to increase family involvement and outreach to the families with Deaf/Hard of Hearing (D/HH) children.

• The MSDB contract requires them to offer a Deaf Mentor Program for D/HH children. The Deaf Mentors are trained through the SKI-HI Institute at Utah State University. During 2022, Deaf Mentor services were resumed in-person, as well as some being conducted over Zoom. Throughout 2022, services were provided to 15 families. Deaf Mentors also offered 39 online American Sign Language (ASL) classes, and 16 in-person.

• In the summer of 2022, in-person activities were resumed by the MT Hands & Voices Chapter. An in-person parent advocacy training was held in March of 2023 and was attended by 22 parents. CSHS is continuing the work of engaging with Deaf/HH families through activities such as: outreach events; support groups; playground days; science camps; ASL story times, and gymnastic days.

• The UNHSI Coordinator also leads the 18-member UNHSI Learning Community (LC), composed of: five parents; a D/HH adult; audiologists; Early Interventionists; an epidemiologist; data manager; nurse consultant; and hospital screening staff.  The LC focused on developing family-focused outreach and education materials and identifying strategies to reduce Loss to Follow-Up for newborn hearing screenings. Program staff provide outreach to various levels across the healthcare system and directly to families.  Training opportunities are provided to program staff, family support specialists, and parents. In 2022, two professionals and three parents attended the Hands & Voices Family Leadership Conference in Fairport, New York. In March of 2023, two professionals and five parents attended the national Early Hearing Detection & Intervention (EHDI) conference in Cincinnati, Ohio.

• In FFY 2022, a Governor-appointed Newborn Screening Advisory Committee began convening at a minimum on a bi-annual basis.  It was created by legislation in the 2021 legislative session and is supported by a partnership between CSHS and the Public Health & Safety Division’s (PHSD) Metabolic Newborn Screening (NBS) Program.  Committee membership includes two individuals affected by the condition under consideration, or two family members of individuals affected, regarding conditions screened through the Metabolic NBS Program. The committee met three times in 2022, and twice in 2023, with another meeting set for the fall.  The focus of the first two meetings was to onboard the members and decide on by-laws, screening criteria and nomination process. In the following meetings, the committee started reviewing nominated conditions such as Krabbe and Adrenoleukodystrophy (ALD) and a third is on the fall 2023 agenda. The meetings are public and advertised on the DPHHS calendar.

• Beginning in FFY23, new contracts were opened for peer services across the state, which was initiated by a Request for Proposal (RFP) in FFY 22.  The RFP was aimed toward organizations which could provide individual, group or state-wide resource navigation peer services to CYSHCN families. Family-led organizations were prioritized in the process to achieve the goal to increase the delivery of family peer services in the state. CSHS received three replies to the RFP and awarded two contracts. Montana’s Peer Network was selected to transition away from the Montana Parent Partner Program/ HALI Project; and Canvas Early Learning Center/ Early Childhood Coalition of Beaverhead County was selected to take over the existing Circle of Parents work done by Butte 4C’s.

Family Peer Support is an individual direct service peer program, and the Montana Peer Network was contracted to facilitate the Family Peer Support Program in communities across Montana. Family Peer Supporters, who are parents of CYSHCN, work in clinics to support and provide referrals to families - and inform them of CSHS family, clinic, and community resources.

In FFY22, 276 families across the state received Montana Parent Partner Program (MPPP) services in 1889 total encounters. In the first nine months of FFY23, 188 families across MT have received Family Peer Support services in 972 total encounters. The number of families served, and respective encounters, have decreased from FFY22 to FFY23 which CSHS suspects is due to a disruption in services from October to December of 2022 due to contract delays.

Circle of Parents, based on a national model of peer groups, is led by parents and other caregivers, and has a very strong emphasis on Parent Leadership. Circle of Parents groups are held in a variety of urban and rural counties across the state, and the program is led by two Parent Leaders. In FFY22 there were 12 groups across the state.  As of June 1, 2023, there are eight groups and Canvas Early Learning/ Early Childhood Coalition of Beaverhead County is anticipating expanding to 11 groups before the end of FFY23.

• The CSHS Stakeholders’ Group includes eight family members and one consumer. The most recent meeting was in August 2022 and was conducted virtually. The next meeting scheduled will occur in-person, in August 2023. CSHS is soliciting feedback on the meeting agenda and format from critical partners, like the Family-to-Family Information Center and the Title V Parent Delegate.

• CSHS contracts to fund work with the University of Montana’s Rural Institute for Inclusive Communities (UMRIIC), which is a key source of family and stakeholder input. The UMRIIC leads the Consumer Advisory Council (CAC), a group of 15 consumers and family members in transition, and representatives who serve the population.  The CAC works with CSHS staff to revise the Healthcare Transitions Guide as needed.  UMRIIC and CAC staff raise awareness and provide educational information at venues such as conferences, vendor fairs, and monthly learning webinars.  Attendee’s feedback is shared with CSHS, integrated into quality improvement efforts, and aids in selecting future topics.

• In FFY21, a committee was formed to assist the CSHS Financial Assistance Program with reviewing applications to the program. The committee is composed of: CSHS staff; parent leaders; two staff from the Family-to-Family Information Center; and the Title V Family Delegate.  The committee continues to meet on a regular basis to discuss and review financial assistance applications, and determine how funding should be allocated.

• In September 2019, the Title V Director/MCHS Supervisor was re-appointed to serve as one of 29 members on the MT Council on Developmental Disabilities. The Title V Director continued to serve as a member throughout FFY22. The members are primarily: people with developmental disabilities and family members; representatives from state agencies; state legislators; and groups that work on behalf of people with disabilities.  The Council meets quarterly, at which time the members are apprised of and offered the opportunity to provide their input on the Title V Annual Report and Application.   

Client and consumer satisfaction surveys are conducted regularly with the maternal and child population served by DPHHS programs. The results are included for programming decisions in an ongoing basis.  Current examples include:

• County Health Public Departments (CPHD) which accept Title V MCHBG funding conduct a client survey and use the results to help with their program planning and selection of a national or state performance measure.  The CPHD survey summary is a required annual deliverable.
• Through FFY22, the Title X Family and Reproductive Planning programs required their clinical providers to solicit feedback from clients/participants.
• WIC conducts an annual client/participant survey.
• CSHS has implemented a client/participant survey for those who utilize the cleft-craniofacial clinics in Great Falls.
• MOMS supported the MCHBG with several studies aimed at informing challenges and nuances related to NPM1: Well-Woman Visit. MOMS contracted with UMRIIC to conduct, administer, analyze, and report out the following:
  • MOMS Postpartum Care and Contraception Study to improve postpartum access to contraception; provider familiarity and expertise with postpartum contraception provision; and to understand behavioral health screenings provided during postpartum visits.
  • The Provider Survey: Understanding and Improving Barriers to Treatment and Care of Substance Use Disorder to identify provider bias related to treatment and care of pregnant women with substance use disorder.
  • Facilitators and Barriers to Seeking Treatment and Care of Postpartum Depression to identify risk and protective factors associated with seeking care for postpartum depression symptoms among Montana women who use substances or those with mental health concerns.
  • Maternal Health Care Experiences Survey – Wellness Visit Survey Module to gather information on patient access to, and experiences with, the women’s wellness visit to contribute to the Title V MCHBG Needs Assessment. The wellness visit survey module gathered information on health care utilization (annual wellness visit, and having a wellness visit the year before pregnancy); services included (physical exam, health history, health screening(s), reproductive life planning); health screenings (cervical cancer, depression and/or anxiety, sexually transmitted infections, substance use, breast cancer, and other screenings); patient satisfaction; and an open-ended question on areas for improvement.