Access to Services and Supports for Children and Youth with Special Health Needs

The 2021-2025 priority need related to children and youth with special health needs (CYSHN) is to ensure that the population and their families can access needed services and supports in a timely fashion. Programmatic efforts from FY2021 aimed at addressing this priority need are discussed below. We conclude with information on how Minnesota is measuring our progress/impact on improving access to services and supports.

Strategy A. Enhance Centralized Resources to Improve Knowledge of Services and Supports

Activity 1: Coordinating Online Resource Directories with Interagency Partners

To implement this strategy, MDH worked with interagency partners to coordinate efforts around online centralized resource directories so that they better serve families of CYSHN – especially those with older children. During FY2021, four directories of focus were the Minnesota Disability Hub, Help Me Connect, CYSHN Navigator, and Autism Portal (see Figure 1).

Figure 1. Minnesota Centralized Resource Directories/Websites

After conducting informal discussions with partners, we decided to discontinue promotions of the CYSHN Navigator during late FY2021. The Navigator had been originally developed to serve as a primary resource for families of children with special health needs and disabilities but visits to the site were on the decrease throughout the year and visits to other sites, such as Minnesota Disability Hub and the Autism Portal, increased. The CYSHN Navigator was taken off the web in early FY2022.

Another major activity during FY2021 was the launch of Help Me Connect, an online resource navigator that connects pregnant and parenting families with services in their local communities. More information on the launch and implementation of Help Me Connect is discussed in the Child Health FY2021 Annual Report portion of this narrative. Of note was the inclusion of CYSHN staff and parent voices in developing the navigator.

Activity 2: Working with Local Public Health (LPH) to Provide Assessments and Follow-Up

Since Minnesota’s Title V Program does not provide direct services to families, the program partners with others that have direct contact with families and ensure families are educated on systems navigation, medical home, and care coordination. The MDH Newborn Child Follow-Up (NCFU), Early Hearing Detection and Intervention (EHDI), and Birth Defects Programs provide follow-up with infants identified with a birth defect or conditions found through newborn screening – this follow-up is provided with public health nursing support. More information on these programs is included in the CYSHN FY2023 Application Year Plan. These programs are funded by state and federal sources apart from Title V funding; however, Title V staff work closely in conjunction with the public health nurses to help bring a system perspective to the work.

Figure 2 provides information on the number of families who received public health nursing support during FY2021. The number of assessments conducted during the first quarter of the fiscal year was down due to the COVID-19 pandemic and response work (both within MDH and at local public health agencies). However, starting in the second quarter, the number of assessments completed was closer to the typical amounts expected in a year.

Figure 2. Families Receiving Public Health Nursing Support (FY2021)

Activity 3: Enhancing Interagency Relationships

Interagency collaboration has been embedded within all our work as a Title V CYSHN Program. During FY2021, partnerships of interest included:

• Early Childhood Systems Initiatives: Sarah Dunne, CYSHN Supervisor, was appointed to serve as the MDH representative on the Governor’s Interagency Coordinating Council (ICC), which advises and assists the Minnesota Department of Education (MDE) around Part C of the Individuals with Disabilities Education Act – Program for Infants and Toddlers with Disabilities.
• School-Age and Transition Initiatives: Wendy Berghorst, CYSHN Coordinated Care Systems Specialist, is a member of the Interagency Management Team related to Part B of the Individuals with Disabilities Education Act.
• Autism Interagency Work: CYSHN staff participated in an interagency autism workgroup that coordinates statewide efforts to serve people with autism and their families.
• COVID-19 Pandemic Response Interagency Efforts: Nicole Brown, Title V CYSHN Director, and other CYSHN staff participated on an interagency workgroup that worked to problem solve around issues faced by families of children with disabilities because of the COVID-19 pandemic and the state’s response efforts.

Strategy B. Build the Capacity of Communities by Cultivating Knowledge and Improving Collaboration

Activity 1: Facilitating the Pediatric Care Coordination Community of Practice

The Minnesota Pediatric Care Coordination Community of Practice (CoP) aims to improve access to high quality care coordination. More information on the CoP – including aims and goals – is included in the CYSHN FY2023 Application Year Plan.

ACET, Inc. began coordinating the Pediatric Care Coordination Community of Practice in January 2020. This program facilitates communication and collaboration among pediatric care coordinators across Minnesota to better serve children and youth with special health needs. As of June 30, 2021, approximately 443 individuals had joined the CoP. Figure 3 details the percentage of members based on their work sector.

Figure 3. Community of Practice Membership, by Sector

The website for the CoP, https://www.mnpedcares.com/, launched in June 2020. Since that time, the website has been an active resource for CoP members. The website includes:

• Information about webinars, trainings, and conferences relevant to care coordinators (476 postings).
• Information about 167 organizations that support CYSHN and their families.
• A collection of over 100 resources, such as toolkits, journal articles, and other pertinent websites for care coordinators to explore and learn from.

Quarterly Webinars are provided to increase knowledge of care coordination promising practices, skills needed for management of care and access to valuable resources for people who coordinate care for CYSHN and their families. Webinars held during FY2021 included:

• Centering on the Margins: Improving Care Coordination for Transgender and Gender Diverse Children and Youth (October 20, 2020)
• Suicide Ideation and Assessing Risks: Saving Minnesota’s Youth (January 26, 2021)
• Understanding Fetal Alcohol Spectrum Disorders (FASD): What Care Coordinators Need to Know (April 20, 2021)
• Understanding Covid-19 Vaccines and Concerns for Children with Specialized Needs and Disabilities (July 13, 2021)
• The COVID-19 Pandemic and Mental Health: Caring for Ourselves and Supporting Children with Specialized Needs and Disabilities (August 24 & 31, 2021).

Registration for these webinars averaged over 100 people. Data shows that about 67% of those that register attend the webinars. For those that attend, a certificate of attendance is provided. All webinar survey respondents agreed the information was presented in an easily understood way, met the objectives of the webinar, and the materials covered were relevant. Almost all agree the information presented increased their knowledge of the topic. These webinars are recorded and archived on the CoP website for future reference.

A CoP eNews blast (newsletter) is sent out quarterly to members. CoP members submit articles to be included in the newsletter where they highlight key aspects of their work with CYSHN and their families. The newsletters also include pertinent announcements and upcoming webinar information.

A new CoP activity during FY2021 was the offering of regional meetings to build membership and collaboration across the state. Five virtual regional meetings were held between February and April 2021 with nearly 80 persons attending the meetings in total. During each regional meeting, participants had the opportunity to learn from their peers and network in small groups. A key intended outcome of these meetings was increased awareness of others providing care coordination within the regions. This outcome was met as 100% of participants reported meeting someone new in their meeting.

Activity 2: Funding Family-to-Family Support

Family support is an integral part of a comprehensive system of care for CYSHN and their families. During FY2021, Minnesota’s family-to-family support was provided via two main programs: 1) a family-to-family Support Program for parents of children identified as deaf or hard of hearing, and 2) the Family Support and Connections Program for the broader population of families of CYSHN. Both these programs provide support and assistance to families in navigating the system of care.

Early Hearing Detection and Intervention (EHDI) Program Parent Support.

Minnesota’s EHDI Parent Support Program is housed in the CYSHN section and is a statewide parent support program for families of children who are deaf or hard of hearing. During FY2021, family-to-family support was provided via a grant agreement with Minnesota Hands and Voices. The program utilizes trained parents of children who are deaf or hard of hearing as parent guides. The guides are located throughout Minnesota, and many are from diverse communities including East African, Southeast Asian, and Spanish-speaking communities. Parent guides contact each family of a child newly identified as deaf or hard of hearing through the state’s Early Hearing Detection and Intervention program to provide ongoing parent support, information and referral, education, and networking opportunities. During FY2021, 211 families of children newly identified as D/HH were served through the EHDI Parent Support Program.

Family Support and Connections Grant Program

In late FY2017, MDH entered into a grant agreement with Family Voices of Minnesota to implement our Family Support and Connections Program. Through the grant, Family Voices of Minnesota has implemented and expanded their Connected program. The Connected program includes the following components:

• Providing outreach and support to families to help them connect with needed services and supports through a family peer-to-peer support model that utilizes trained parent/caregiver community navigators who assist families in a nonjudgmental manner.
• Providing training to families and other stakeholders on navigating the health, human services, and education systems, including training on the principles of medical home and care coordination, and on insurance/financing options.
• Assisting the CYSHN Program in assessing and reporting on the needs of families with CYSHN across the state, which can include utilizing and disseminating information gathered from conducting peer-to-peer support or other focus group or family input opportunities.
• Educating families on the availability and benefits to the medical home structure and care coordination to ease familial stress and improve health and wellness outcomes for CYSHN and their families.

During FY2021, 323 families were served through the Family Support and Connections Program. In addition, Family Voices of Minnesota provided information on their Connected program to 115 professionals who work with families.

Evidence-Based Strategy Measure

Our evidence-based strategy measure (ESM 15.1) related to the insurance and financing NPM is the percentage of families receiving family-to-family support who reported increased confidence in navigating care for their child. Our FY2021 indicator was measured using data from our Family Support and Connections Grant – awarded to Family Voices of Minnesota. As shown in Figure 4 below, during FY2021, 97.5% of families reported increased confidence in navigating care, coming in above our target for FY2021f (70%).

Figure 4. Percent of families receiving family-to-family support who report increased confidence in navigating care for their child

Activity 3: Supporting Workforce Trainings on Insurance and Financing

During FY2021, MDH had originally planned to release a Request for Proposals to contract with an organization(s) to develop an innovative approach toward ensuring members of the CYSHN workforce are knowledgeable about and can access the most appropriate insurance and financing options. However, due to staffing limitations brought on by the Department’s COVID-19 Pandemic response, we were not able to plan and implement this activity. Continued staffing limitations continue to keep this activity on hold.

Activity 4: Convene the Community Forum for Children and Youth with Special Health Needs and Disabilities (CYSHN/D)

The Minnesota Community Forum for CYSHN/D has been convened as a joint initiative of MDH and Family Voices of Minnesota. The Forum brings together families/self-advocates, state agencies, payers, nonprofit organizations, and providers to improve awareness, collaborate, learn, and identify opportunities to improve systems of care for CYSHN in Minnesota (see Supporting Documents – Appendix B for Narrative Frames developed by the Forum). The work of the Forum remains on hold as staffing limitations both within MDH and Family Voices of Minnesota remain in place. We plan to have conversations moving forward on whether to bring back the Forum or if there is another option better suited for gathering stakeholders.

Activity 5: Responding to the COVID-19 Pandemic

Intentional efforts responding to the impact of the COVID-19 pandemic on CYSHN and their families that were implemented during FY2021 included:

• Partnering with the Minnesota Department of Human Services (DHS) to fund innovation grants for family-led organizations to help address social isolation experienced by families. These grants provided peer-to-peer opportunities that helped families learn

from one another through information and skills sharing. The grant projects started in September 2020. MDH funding for the projects ended in June 2021, however, the projects continue to be funded through DHS. An evaluation of the grants was conducted in June 2021. An Impact Report detailing the findings of the evaluation are included in the Supporting Documents.

• As discussed above in the Interagency Relationships activity, Nicole Brown, Title V CYSHN Director, and other CYSHN staff participated on an interagency workgroup that worked to problem solve around issues faced by families of children with disabilities because of the COVID-19 pandemic and the state’s response efforts.
• In May 2020, the Disabilities Unit met with some advocates from the disability community and asked their advice on how to best include input from the community in the COVID response. Out of this meeting, the Disability Advisory Group was formed. The intent was for the group would be small (4-5 external partners along with additional state agency staff) so that embargoed information could be shared with members and remain private. The purpose of the group was “to work with the MDH People with Disabilities Partners Unit and other staff (part of the Incident Organization Staffing) to provide input and insight into MDH’s COVID-19 efforts that impact people with disabilities (including children and youth with specialized health needs and disabilities) as well as to improve communication and coordination between MDH, DHS and community organizations.” Disabilities Unit staff feel the trust level within this group has grown over time and together we have drafted a great deal of guidance, communications and systems changes that improved the COVID response for persons with disabilities of all ages.
• An amendment to the original grant agreement with ACET, Inc was executed as of April 2021 to expand facilitation activities for the Pediatric Care Coordination Community of Practice to collaborate with MDH and other partners to engage care coordinators to share COVID-19 information and resources.
  • Connect with MDH COVID and interagency staff to learn about resources to share with care coordinators
  • Promote awareness of available resources and assist care coordinators in accessing resources to address the full range of COVID-19-related needs in families. A COVID-19 page of pertinent information and resources was added to the CoP website.

Activity 6: Advocate for Systematic Changes to Address the Needs of the Rare Disease and Medically Complex Community

Minnesota’s CYSHN Title V director represents the Commissioner of Health on the Chloe Barnes Advisory Council on Rare Diseases. The Council’s purpose is to provide advice on research, diagnosis, treatment, and education related to rare diseases. Its membership includes health care providers, administrators, caregivers or people with rare disease, health plan representatives, researchers, and members of the Minnesota legislature. In FY2021, title V staff participated on the Council’s Coordination of Care/Transition of Care workgroup focused on identifying and improving system level barriers. A front-line provider survey developed collaboratively between the Council and the University of Minnesota resulted in over 300 providers responses identifying knowledge and comfort with rare disease diagnosis and treatment, barriers to next steps when presented with a rare disease, coordination of care and transition from childhood to adulthood, and education/training needs. The survey results will be used to inform next steps and future initiatives. Additionally, Title V director and staff continued participation in the Children with Medical Complexity CoIIN with Gillette Children’s Hospital, Family Voices of Minnesota, and Minnesota Medicaid.

Strategy C. Construct a Competent and Well-Compensated Workforce

One reason why families may have trouble in accessing needed care for their child is the shortage of qualified, competent professionals who are available to serve CYSHN. While workforce shortages can occur for many reasons, a primary concern in Minnesota is the lack of compensation provided to the direct service professionals who typically serve CYSHN, such as personal care assistants, in-home nurses, and child care providers. This lack of compensation can oftentimes be due to a lack of reimbursement available for services provided.

Activity 1: Partnering with Minnesota’s Medical Assistance Program

During FY2021, we had intended to better utilize technical assistance provided by the Catalyst Center at Boston University to help build a strong partnership with the state’s Medicaid Medical Director and other staff. However, due to staff reassignments to work on the Department’s COVID-19 response, we were not able to complete this activity like we hoped. We plan to continue this work into FY2022 and FY2023 starting with participation in the Catalyst Center’s regular NPM 15 technical assistance calls.

Activity 2: Partnering to Improve Financing of Health Care Delivery

MDH had planned to start work on convening partners to advocate for innovations in policy and financing related to care delivery for CYSHN during FY2021, however, this activity was also placed on hold due to the Department’s COVID-19 pandemic response.

Ongoing Efforts Related to CYSHN

Integrating Health into the Individualized Education Plan (IEP) and Annual Plan Process

During FY2020, Title V staff continued to partner with representatives from the Minnesota Departments of Human Services, Education, and Employment and Economic Development to evaluate and improve the coordinated interagency statewide services system for children and youth with disabilities and their families. This work has included assuring the health care needs of students with disabilities (3-21 years old) are addressed and incorporated into the statewide improvement by:

• Developing strategies and facilitating coordination between health care plans and the Individualized Education Plan (IEP),
• Promoting mental health wellness within schools, and
• Ensuring health care equity work includes children and families with disabilities.

Title V staff also worked with interagency partners on implementing an Interagency Person-Centered Pilot Project aimed at empowering students with disabilities and mental health concerns to make decisions about and plan for their own lives. This was done through implementation of a new Interagency IEP processes that integrate person-centered practices.  During FFY2020, an Interagency Management Team (IMT) launched the second phase of the pilot project, which worked with the Southern Minnesota Educational Consortium, Saint Paul Public Schools, and Saint Paul City Schools. The pilot aimed to gather feedback from those improving their interagency IEP processes using person-centered practices, as well as track fidelity and evaluation protocols to inform possible statewide implementation. Saint Paul City Schools ended up dropping out of the pilot in late 2020, as they struggled identifying students for the project as outlined. Leadership committees were established for each pilot site. Each community completed a baseline capacity assessment and one re-assessment of their progress.

As with many of our other activities, school and agency closures and changes in services due to the COVID-19 pandemic had a dramatic impact on the pilot. The IMT met periodically with the lead contacts of SMEC and St. Paul sites to problem solve and troubleshoot on how they could continue their work even though the work of schools went virtual in March 2020.

Measuring Progress in CYSHN

Because access to adequate health insurance has a great impact on the ability of CYSHN and their families to receive needed services and supports, Minnesota has chosen Performance Measure (NPM) 15 for our current five-year block grant cycle, which started in FY2021. This NPM measures the percent of CYSHN, ages 0-17, who are consistently and adequately insured. Our five-year goal to increase the percentage of CYSHN who are adequately insured by 10% (i.e., approximately 66.1% of CYSHN will be adequately insured by 2025).

As shown in Figure 5, the 2019-2020 NSCH (used to measure the FY2021 annual indicator) found that 59.3% of CYSHN had consistent and adequate insurance. This is a decrease from our baseline measure (taken from the 2017-2018 NSCH) and is under our target for the year (61.3%).

Figure 5. Percent of CYSHN who are continuously and adequately insured (NPM 15)

To qualify for this measure, the child must both: 1) have continuous insurance in the past 12 months, and 2) have current insurance that is adequate for the child’s health care needs. For the insurance to be adequate it must meet all the following criteria:

1. Child currently has insurance
2. Benefits usually or always meet child’s needs
3. Insurance usually or always allows the child to see needed providers
4. Insurance either has no out-of-pocket expenses or out-of-pocket expenses are usually or always reasonable.

Figures 6 and 7 provide breakdowns of these criteria.

Figure 6. Components of continuous and adequate insurance in Minnesotan CYSHN

Figure 7. Components of adequacy of insurance in Minnesotan CYSHN

As you can see, Minnesotan families are particularly struggling with out-of-pocket costs. Between 2010 and 2019, out-of-pocket costs for all Minnesota residents increased by nearly $1.5 billion – and this amount is likely diluted because nearly 36% of Minnesotans are enrolled in Medicaid, MinnesotaCare, and Medicare plans that have limited or no cost-sharing obligations. Minnesotans who are privately insured or uninsured and who have more complex needs (such as needing costly prescriptions) typically have substantial out-of-pocket costs – and those costs are only rising. Between 2018 and 2019, Minnesotans with employer-sponsored coverage say their annual deductible increased nearly $130 for family coverage. Other concerning trends include:

• Around 25% of Minnesotans reported forgoing needed health care in 2019, up from 21% in 2017.
• Around 22% of Minnesotans reported having problems paying their medical bills in 2019, up from 20% in 2017.
• Around 390,000 Minnesotans (7.2%) reported struggling to pay basic bills like rent, heat, and groceries due to medical bills.[1]

While these trends are seen in all Minnesotans, families of CYSHN often are experiencing more issues with costs and coverage than those who do not have CYSHN. Families of CYSHN are less likely to have coverage that meets their child’s health care needs, less likely to have coverage that allows their child to see needed providers and are less likely to report out-of-pocket costs as reasonable than families who do not have CYSHN.

[1] MDH (2021). Minnesota Health Care Spending: 2018 and 2019 Estimates and Ten-Year Projections. Report to the Minnesota Legislature. Retrieved from: https://www.health.state.mn.us/data/economics/docs/2019spendingrpt.pdf.