An estimated 222,109 children and youth in Minnesota (approximately 17.2% of children 0-17 years old) have special health needs, which includes a range of chronic physical, developmental, behavioral, and emotional conditions.[1] These children and youth use a variety of services and supports, including (but not limited to) dental services, specialized therapies and child care, mental health counseling, respite care, specialized medical care and equipment, special education services, other community-based services, and more.
Unfortunately, it is not always easy or possible to access these crucial services. Children and youth with special health needs (CYSHN) and their families are more likely to report having forgone needed services compared to those without special health needs. Unfortunately, the more complex the needs of the child, the less likely they are to receive needed services. Those living in poverty, in rural areas, or who identify as non-white often face the greatest barriers to care. National-level data[2] shows disparities between CYSHN of different races on several systems indicators related to access to services and supports. According to the National Survey of Children’s Health, compared to non-Hispanic Black and Hispanic CYSHN, non-Hispanic White CYSHN were more likely to have received care in a comprehensive medical home, received services necessary to transition to adult health care, and received care in a well-functioning system. In addition, non-Hispanic Black and Hispanic CYSHN are more likely than White CYSHN to be uninsured or to have inadequate insurance.
Families often must forgo care due to challenges in accessing care, such as long waitlists or problems getting appointments, troubles with eligibility criteria, complex systems to navigate, a lack of support services for parents and other family members, child care issues, language and cultural barriers, and transportation issues. Families also face challenges accessing care because of a shortage of qualified professionals, especially with home health (i.e., home care nursing and personal care assistance) and mental health services in the state. Reasons for these shortages include low pay, high turnover, lack of early childhood mental health specialization, and limited providers in Greater Minnesota.
There are strong connections between racism and ableism that lead to barriers to care and ultimately poorer outcomes. It is important to understand how racism and ableism are linked and how that impacts Black, Indigenous, and People of Color (BIPOC) with disabilities/special health needs.
“Racism and ableism are often thought of as parallel systems of oppression that work separately to perpetuate social hierarchy. Not only does this way of looking at the world ignore the experiences of people of color with disabilities, but it also fails to examine how race is pathologized in order to create racism. Meaning that society treats people of color in specific ways to create barriers, and these poor conditions create disability. The concept of disability has been used to justify discrimination against other groups by attributing disability to them.” – Isabella Kres-Nash[3]
Because so many families of CYSHN have reported issues in accessing services and supports, Minnesota has identified this as a priority need for our five-year block grant cycle. Considering the COVID-19 pandemic, many of these issues faced by families in accessing care have been magnified.
Families may experience issues accessing care because they lack adequate health insurance. The uninsured rate in Minnesota rose between 2015 and 2017 – increasing from 4.3% to 6.3%, a statistically significant difference between the two years.[4] According to the 2018-2019 National Survey of Children’s Health (NSCH), an astounding 43% of CYSHN in Minnesota did not have insurance coverage that was adequate to meet their needs.[5] CYSHN are less likely to have been consistently insured throughout the year and less likely to have insurance that is adequate (meaning it meets the child’s needs, allows them to see needed providers, and has reasonable out-of-pocket costs) (see Figure 1).
Figure 1. Insurance Status Measures – Minnesota CYSHN vs. Non-CYSHN, 2018-2019
Five-Year Strategies and Activities Moving Forward
Framework for CYSHN Efforts
As with the other priority areas, a Strategy Team was assembled to identify a set of strategies for the Minnesota Title V program to address issues CYSHN and their families face. In addition to developing the strategies identified below, the Team also created a framework from which all strategies are built.
In all strategies, we aim to:
- Meet families where they are, in person- and family-centered and culturally-responsive ways.
- Ensure all materials developed are made fully-accessible, meaning they are in plain language, meet the standards as laid out in the Americans with Disabilities Act, and are presented in a format that best meets the needs of the intended audience.
- Ensure CYSHN and families are equal partners at the table in developing, implementing, and evaluating programming.
- Collaborate across state agencies to ensure coordinated and consistent messaging and terminology.
- Remain data-driven in our efforts, both utilizing evidence-based and promising practices and evaluating the effectiveness and return on investment in programming.
A logic model has been developed to visualize our planned work and intended results (see Figure 2). A larger version of the logic model is included with the supporting documents for this application. This logic model, along with the five-year action plan table, provide a broad picture of Minnesota’s strategies aimed at increasing access to services and supports for CYSHN and their families. The discussion below includes Minnesota’s plans for implementing the strategies during FY2022 specifically.
Figure 2. Minnesota Access to Services and Supports for CYSHN and Families Logic Model
Strategy A. Enhance Centralized Resources to Improve Knowledge of Services and Supports
The first strategy aims to enhance coordinated, centralized resources (including online resource directories and LPH agencies) where families are able to learn about and gain access to services through a “no-wrong door” approach.[6]
Coordinating Online Resource Directories with Interagency Partners
To implement this strategy, MDH will work with interagency partners to coordinate efforts around online centralized resource directories so that they better serve families of CYSHN – especially those with older children. Four directories of focus are the Minnesota Disability Hub, Help Me Connect, CYSHN Navigator, and Autism Portal (see Figure 3).
Figure 3: Minnesota Centralized Resource Directories/Websites
During FY2022, Minnesota plans to conduct an assessment with the target audiences, to explore benefits, and gaps of each of the sites to evaluate their effectiveness and identify areas of improvement.
- CYSHN Navigator: Determine whether to continue to use on the website, or to change focus to Help Me Connect or the Disability Hub.
- Help Me Connect: Ensure website meets the needs of families of young children with special needs and disabilities.
- Minnesota Disability Hub: Partner with staff from the Department of Human Services to ensure resources geared toward families/parents/caregivers are included.
Working with Local Public Health (LPH) to Provide Assessments and Follow-Up
Title V staff plan to work with LPH to increase assessments and follow-up provided to children with (and at-risk for) special health needs. Because of their broad understanding of the local system of care and available supports for families, nurses and other professionals within LPH agencies serve as a centralized resource in Minnesota’s public health system. During FY2022, Minnesota will focus on follow-up provided via MDH’s Newborn Child Follow-Up, Early Hearing Detection and Intervention (EHDI), and Birth Defects Programs:
- Minnesota’s Newborn Child Follow-Up Program provides follow-up phone calls to families of children identified with certain heritable conditions during newborn screening. The goal of the program is to reduce the impact the conditions have on children and their families. As a part of the program, public health nurses assess families’ health care access and connect them to resources, including the state’s Family-to-Family Health Information Center. While many of these assessments are currently conducted by public health nurses employed by MDH, we aim to transfer assessments for some conditions to nurses within LPH agencies.
- Minnesota’s EHDI and Birth Defects Follow-Up Programs contract with LPH agencies to conduct follow-up with families of children identified with a birth defect or hearing loss. Public health nurses contact families to conduct an assessment, help navigate the system, provide education about various supports and services, and refer families to important resources. LPH nurses use a database to track concerns families identify through their assessment and the follow up education and counseling provided.
In future years, Minnesota will work to expand this follow-up model more broadly with other CYSHN, including those who are at-risk for special health needs from developmental delays, neonatal abstinence syndrome, and possible or confirmed cytomegalovirus (CMV) infection, for instance.
Enhancing Interagency Relationships
Finally, MDH will embed interagency collaboration with other state agencies in all our work. During FY2022, partnerships of interest include:
-
Early Childhood Systems Initiatives:
- The Preschool Development Grant, described more in the Child Health Domain, aims to support families with young children who are experiencing racial, geographic, and economic inequities so they can be born healthy and thrive within their families and community. Staff will provide feedback into the development of the Help Me Connect website and other activities that are a part of this grant project.
- The Governor’s Interagency Coordinating Council (ICC) advises and assists the Minnesota Department of Education in the planning, coordination and delivery of a coordinated statewide, interagency system of services for children with special health needs (birth to five years old) and their families. CYSHN Staff represent MDH on the ICC.
- School-Age and Transition Initiatives: MDH staff will continue to partner on services around evaluating and improving the coordinated interagency statewide services system for children and youth (3-21) with disabilities and their families consistent with IDEA Part B and family and student engagement. This is a collaboration with the Minnesota Departments of Human Services, Education, and Employment and Economic Development. This project has developed a menu of person-centered and interagency practices and tools. This project is described in more detail in the “Ongoing Efforts Related to CYSHN” section.
- Autism Interagency Work: Staff in the CYSHN section continue to partner in an Autism Interagency Workgroup that coordinates statewide efforts to support people with autism and their families. The Workgroup consists of staff from the Minnesota Departments of Health, Human Services, Education, Employment and Economic Development; the University of Minnesota; and the Autism Society of Minnesota. The Workgroup reports back to the legislature on the implementation of the strategic plan on an annual basis and maintains the Minnesota Autism Resource Portal. The group has been recognized within individual agencies and by community partners as a model for successful collaboration among agencies and key partners.
- COVID-19 Pandemic Response and Rebuilding Initiatives for Children with Disabilities: This interagency group problem-solves issues faced by families of children with disabilities during the COVID-19 pandemic and will continue as the state shifts from the pandemic emergency response. In addition to MDH staff, the group includes the Disability Services Branch of the Minnesota Department of Human Services and the Part B program at the Minnesota Department of Education.
Strategy B. Build the Capacity of Communities by Cultivating Knowledge and Improving Collaboration
Minnesota will also support capacity-building within communities by cultivating knowledge and improving collaboration. When we use the term “community,” we are referring to a group of people who have something in common. More specifically, we tend to mean those who live in a certain geographic area and share access to specific structures including housing, education, recreation, transportation, employment, health care, and more. Inherent in this strategy is the belief that CYSHN and their families belong in their communities – and deserve to feel safe, loved, and accepted for who they are. This means that communities must be environmentally and socially safe and accessible for all members, including those with special health needs.
To cultivate knowledge and collaboration in the community, we intend to work with different partners who have various roles in ensuring the health and well-being of their community. During the next five years, we intend to expand partnerships that serve, love, or care for CYSHN in the community, including care coordinators, family leaders, case workers, LPH, providers, school nurses, and others.
Facilitating the Pediatric Care Coordination Community of Practice
A first activity aimed at building capacity of the community is facilitating a Pediatric Care Coordination Community of Practice. This is a continued activity from Minnesota’s previous five-year action plan, and aims to increase knowledge, skills, and connections of care coordinators to improve access to effective culturally-relevant care coordination for CYSHN and their families. The Community of Practice is open to anyone who provides care coordination to children and youth in Minnesota who would like to learn with and from one another. A logic model which visualizes the activities and intended outcomes of the Community of Practice is included below in Figure 4. A larger version of the logic model is included with the supporting documents for this application.
Figure 4. Pediatric Care Coordination Community of Practice Logic Model
During FY2022, MDH will continue to work with ACET, Inc., a woman- and minority-owned small business enterprise based in Minneapolis to facilitate the Community of Practice. Under the guidance of an advisory workgroup, comprised of leaders in care coordination from across the state, ACET and MDH will work together to:
- Conduct an ongoing needs assessment to identify strengths, needs, issues, and challenges in providing care coordination. Use findings to inform topics for trainings and meetings.
- Develop promotional and marketing materials.
- Recruit coordinators from within communities and across sectors, organizations, and geographic regions of the state.
- Compile tools, resources, and trainings on innovative or best practices in providing culturally-relevant care coordination.
- Promote the Networking and Resource Center that includes a directory of participants; forums for sharing resources trainings, and tools; and discussion forums or opportunities for participants to communicate, network, and problem solve with one another.
- Convene regional meetings and begin planning a statewide conference to encourage peer-to-peer sharing, networking, and collaboration at the regional level.
- Conduct an evaluation that includes process and outcome measures.
Funding Parent-to-Parent Support
Family support is an integral part of a comprehensive system of care for CYSHN. Family support occurs along a continuum, and when given an option, families often report they prefer one-on-one support from other parents who have shared their experiences. Therefore, supporting evidence-based family support that connects families with trained peer support navigators in the state continues to be a priority in Minnesota for this five-year action plan.
Minnesota’s family support is provided via two main programs: 1) a Parent-to-Parent 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.
Early Hearing Detection and Intervention (EHDI) Program Parent-to-Parent Support. The CYSHN program oversees grant funding that provides parent-to-parent support services and assistance to all families of children who are deaf or hard of hearing throughout the state. The parent guides are trained to be an impartial and culturally-specific resource to families. Parent guides contact each family of a child newly identified as deaf or hard of hearing to provide parent support, information and referral, and education and networking opportunities.
Family Support and Connections Grant Program. The Family Support and Connections Grant also helps connect families to needed resources and support through a peer-to-peer model. The Family Support and Connections Grant is currently awarded to Family Voices of Minnesota, who implements their evidence-based Connected (parent-to-parent support) program. In FY2022, Family Voices of Minnesota will provide peer-to-peer support, conduct outreach with and collaborate with community resources, and expand the number of parent support navigators. The Family Support and Connections Grant with Family Voices of Minnesota expires late FY2022, so a new Request for Proposals will be developed and released during the year to seek applications from potential grantee(s) for the next grant period.
Evidence-Based Strategy Measure
Parent-to-parent support has been associated with higher levels of parent confidence, positive attitudes of the child and family, and improvements in health care utilization and participation.[7] Furthermore, parent-to-parent support builds the capacity of the community because it equips families with increased confidence and ability to help their children receive the care they need. Many families initially seek out assistance (such as parent-to-parent support) due to issues they experience related to financing needed care for their child.
Because of the reasons stated above, Minnesota continues to use parent-to-parent support as our evidence-based strategy measure (ESM) for current five-year block grant cycle. More specifically, we are measuring the percent of families receiving parent-to-parent support who report increased confidence in navigating care for their child. More information on the measure, data sources, and potential limitations is included on the ESM detail sheet.
Supporting Workforce Trainings on Insurance and Financing
Access to adequate and affordable insurance and financing for services and supports continues to be a need expressed by families of CYSHN in the state. While some families struggle with availability of insurance, many other times insurance, waivers, or other financing options are available; there is just not an awareness of these options among families and providers in the community. Therefore, Minnesota intends to provide opportunities to increase the understanding of insurance and financing options that are available by supporting capacity building efforts for the CYSHN workforce related to insurance and financing. During FY2022, MDH will 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.
Convene the Community Forum for Children and Youth with Special Health Needs and Disabilities (CYSHN/D)
Building partnerships is the first step in the systems building process for establishing integrated, community-based systems of care. No one program, or agency can provide all the services and resources needed by CYSHN and their families. Therefore, 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, non-profit organizations, and providers to improve awareness, collaborate, learn, and identify opportunities to improve systems of care for CYSHN in Minnesota. The goals of the Forum for CYSHN/D are to:
- Improve awareness of existing needs and gaps in the service system for CYSHN and their families.
- Increase collaboration among families, self-advocates, key stakeholders, and state agencies.
- Explore emerging and best practices to improve systems of care for CYSHN.
- Identify opportunities for system change at the state, community, and organizational level.
Forum meetings were put on hold during FY2021 due to the COVID-19 pandemic. The aim is to begin meeting again during FY2022. MDH will re-evaluate with partners on how the group should be facilitated and led moving forward. This may include working to identify family members and self-advocates to serve on a steering committee that will be tasked with determining longer-term goals and priorities moving forward.
Responding to and Rebuilding after the COVID-19 Pandemic
“The impact of the pandemic has been massive on this population. It has been a silent crisis that has not gotten a great deal of attention in media and government.” – Dr. Matthew Siegel, Director of the Developmental Disorders Program at Maine Behavioral Healthcare
Siegel said specialists who work in the field of developmental disorders are seeing a lot of regression in education and behavior during the pandemic that families and professionals had worked for months and years to improve.[8],[9]
CYSHN and their families have been negatively impacted people from the loss of services and supports during the pandemic. Whether it is regression in educational attainment or hard won social skills, loss of medical attention or the loss of jobs to prioritize caregiving and consequent income related hardships that soon followed, it will take years for this population to recover, if they are able to at all. Early in the pandemic (March 2020) MDH surveyed professionals working with CYSHN. This group highlighted economic hardships, emotional and mental well-being, and loss of medical services as critical concerns for the CYSHN population. These and other challenges have only become more acute and deeper. The workforce crisis has become even more grave, leaving individuals and their families more stretched than ever before.
One silver lining of the COVID-19 crisis was that the MDH Incident Command Structure added a unit specializing in addressing the needs of the disability community. One member from the CYSHN section has worked on the COVID response in this unit since late April 2020. This has afforded the opportunity to bring attention to these children and their families in ways not amplified previously. Structural shifts that have more permanent potential are beginning to happen. Disability (at any age) is now seen as a health equity issue. MDH’s Center for Health Equity is in the process of hiring a Disability Coordinator that will provide more coordinated efforts across the department to address the inequities for this population. Additionally, the MDH Infectious Disease Section is hiring an Accessibility Coordinator and the Health Policy Division is hiring Regional Equity Coordinators, of which disability will be part of the equity conversation and efforts. CYSHN Title V staff will provide input into these new positions and coordinate with these important efforts to further address the needs of CYSHN and their families.
As staff return from their COVID reassignment, we hope they will utilize what they have learned and maintain vital relationships with partners. Some intentional efforts we intend to move forward with during FY2022 include:
- Continue to improve strategic partnerships within and outside of MDH to improve the health and well-being of CYSHN and their families.
- Participate in, and if necessary, lead cross division and department efforts around disability.
- Compile and publish a data report that is shared across the department on the health and well-being of CYSHN/D on an annual basis, working across other Divisions at MDH and with other state agencies whenever possible.
- Continue to support the Pediatric Care Coordination Community of Practice in addressing post pandemic needs of CYSHN and their families, including providing resources to hold webinars, develop materials, etc.
- Advocate for the continuation of an advisory group that meets on a regular basis (i.e., monthly) to engage with and advise MDH on efforts related to disability. Include state agency representatives, advocates, families, and youth with disabilities on the advisory group.
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.
Partnering with Minnesota’s Medical Assistance Program
During the next five-year plan, Minnesota aims to address the need for a competent and well-compensated workforce by working to improve our relationship and collaboration with the state’s Medical Assistance (Medicaid) Program. According to the 2018-2019 NSCH, approximately 24.7% of CYSHN have public insurance coverage, which includes Medicaid and other public programs. An additional 8.8% have combined public and private coverage.[10] When we have a better relationship with the state’s Medicaid program, we can better advocate to strengthen the CYSHN workforce to meet the needs of CYSHN families. During FY2022, we intend to 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 to maximize access for CYSHN to health insurance, close benefit gaps, pay for additional services, and build the capacity of the system of care for CYSHN.
Partnering to Improve Financing of Health Care Delivery
MDH will also convene partners (such as those from the Minnesota Community Forum for CYSHN/D) to advocate for innovations in health care reform and improve the financing of health care delivery utilized by CYSHN and their families. This approach will be developed over the course of this five-year block grant cycle, and will start with the following activities during FY2022:
- Build an understanding of the landscape of reimbursement for services and supports and lessons learned by other states tackling these issues.
- Develop infographics/reports that can be used by partners when advocating for change.
- Monitor and influence current and upcoming policy and advocacy efforts.
National Performance Measure and Five-Year Objective
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 National 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.
The 2018-2019 NSCH the found that 54.5% of CYSHN had consistent and adequate insurance. This is a decrease from our baseline measure, which utilized the 2017-2018 NSCH and found 60.1% of C&SHN to have consistent and adequate insurance. 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). Our target for FY2022 is that 62.5% of CYSHN will be adequately insured.
Ongoing Efforts Related to CYSHN
Integrating Health into the Individualized Education Plan (IEP) and Annual Plan Process
MDH staff will continue to partner on efforts around improving coordination among state agencies related to school-age and transition to adulthood initiatives. This includes collaboration with DHS, MDE, and DEED. This project has developed a menu of person-centered and interagency practices and tools that can now be customized according to a local community cohort depending on their priorities and needs to build capacity at the system and individual team levels and to enhance student and family engagement in services and supports. This state interagency team provides consultation, coaching and connections within communities. Focus initially will be on recruitment and local community team development.
Chloe Barnes Advisory Council on Rare Diseases
The Chloe Barnes Advisory Council on Rare Diseases is a result of a grassroot effort from Minnesota patients and families whose lives have been affected by rare disease. Rare patient advocates recognized the need to develop a systematic approach to address the needs of the rare disease community at the state level. The Council was created following the passage of bill HF684/SF973 in the 2019 legislative session. MDH’s CYSHN Director will continue to serve on the Council as the Commissioner of Health’s delegate, a role outlined in statute, and will participate in the Council’s Coordination of Care/Transition of Care Workgroup. A priority of the workgroup is to further develop a registry of adult primary and specialty care clinicians willing and able to care for patients with rare diseases/complex medical needs.
Charting the LifeCourse
The Charting the LifeCourse framework was created to help individuals and families of all abilities and all ages develop a vision for a good life, think about what they need to know and do, identify how to find or develop supports, and discover what it takes to live the lives they want to live. – Charting the LifeCourse website[11]
Minnesota has partnered with the National Community of Practice (CoP) for Supporting Families on implementing facets of the Charting the LifeCourse (CtLC) framework into our work with people with disabilities and their families, caregivers, and support persons (formal and informal). Staff from the CYSHN Program participate on a leadership team comprised of representatives from the Minnesota Departments of Human Services, Education, and Employment and Economic Development to help lead this Community of Practice.
To support this work, the team is creating a network of Minnesota stakeholders engaged in supporting families across the lifespan using the CtLC framework. Through various resources and opportunities, these stakeholders have participated in CtLC Foundational and skills-building workshops and/or a CtLC Ambassador Series and are at various stages of confidence in implementing the framework into their day to day work and/or supporting broader use of the framework to influence system change. The network, MN Connect, will provide a platform for this growing community of innovators and early adopters to network with and support one another for continued learning and ongoing application. Technical assistance will be provided by assigned staff from the National CoP for Supporting Families as this initiative continues to develop.
[1] NSCH 2018-2019.
[2] It is difficult to report on important differences in access to services and supports due to data limitations. Though the National Survey of Children’s Health is a primary data source for CYSHN, Minnesota is unable to conduct sub-analyses at the state level, even when combining data years, due to small sample sizes.
[3] Kres-Nash, I. “Racism and Ableism.” Retrieved March 2021 from https://www.aapd.com/racism-and-ableism/.
[4] MDH Health Economics Program and University of Minnesota School of Public Health, Minnesota Health Access Surveys.
[5] NSCH 2018-2019.
[6] No-Wrong Door Approach: Families are able to get connected to services and supports no matter which organization/centralized resource they contact.
[7] Information gathered from a pre/post evaluation of Family Voices of Minnesota’s Connected Program.
[8] Lawlor J (2021). Families of people with IDD rebuild frayed ties as pandemic eases. Disability Scoop. Retrieved from https://www.disabilityscoop.com/2021/05/25/families-idd-rebuild-frayed-ties-pandemic-eases/29353/.
[9] Alcorn T (2021). To keep their son alive, they sleep in shifts. And hope a nurse shows up. New York Times. Retrieved from https://www.nytimes.com/2021/06/04/health/nursing-shortage-disabled-children.html.
[10] 2018-2019 NSCH
[11] University of Missouri – Kansas City (2020). Charting the LifeCourse Framework. Retrieved from http://www.lifecoursetools.com/lifecourse-library/lifecourse-framework/.
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