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Children and Youth with Special Health Needs News |
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June 2025
View this as a webpage
2025 Local Public Health Conference recap
The 2025 CYSHN Local Public Health Conference took place May 5 - 6 in St. Cloud, with 136 attendees including 97 LPH staff. This year’s theme, Children, Families, and Caregivers: A Focus on Mental Health, featured expert speakers on child psychology, family advocacy, and caring for children with complex needs. Michelle John, keynote speaker and parent advocate, moved the audience with her talk Tyson Tough Assuming Competence and Resiliency in Families (and yourself)!, earning a standing ovation. Attendees also joined breakout sessions, a mini resource and activity fair, and a panel of parents sharing lived experience. Several PowerPoints from our presenters are available on SharePoint by clicking annual conference in the left-hand navigation and going to the “2025 Conference” category. Additional PowerPoints and presenters’ handouts will be added in the coming weeks.
Thanks to all who joined us– your participation helped make this year’s conference a success!
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New webpage for condition follow-up
We’ve launched a new LPH Partner Resources webpage to make it easier for local public health staff to find materials for CYSHN programs– including Birth Defects, EHDI, Heritable Conditions, and cCMV. You do not need a login to view or download materials. We created it in response to delays getting new staff into SharePoint. This way, you can access what you need without the wait. Some materials, like videos and Follow Along Program resources, are still only available on our SharePoint site. We’ll continue maintaining both spaces and providing SharePoint access for new and existing staff.
Program-specific updates
Longitudinal follow up
Help spread the word about CMV awareness month!
June is CMV Awareness Month! Help raise awareness about cytomegalovirus (CMV), the most common infectious cause of birth defects and hearing loss in the U.S. About 1 out of 5 children born with CMV will develop long term health challenges, which can include hearing loss, vision loss, cerebral palsy, seizures, intellectual disability, and developmental delay. Throughout the month, CYSHN will be sharing educational content on MDH’s social media channels. You can amplify efforts by sharing CMV-related social media posts with your networks–whether professional or personal. Increasing awareness is a key step toward reducing the risk of infection.
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Metachromatic leukodystrophy approved for newborn screening
Minnesota Commissioner of Health, Dr. Brooke Cunningham, approved the Newborn Screening Advisory Committee’s recommendation to add metachromatic leukodystrophy (MLD) to the Minnesota Newborn Screening panel. A screening start date will be shared when the program is closer to implementing screening and follow-up processes are determined.
MLD is a rare genetic disease. Based on the birth rate in Minnesota, the public health lab expects to identify about one baby each year with MLD who can benefit from early interventions and have life-changing outcomes because of newborn screening. A recent MDH news release states that there is no cure for MLD, but early intervention can help manage symptoms and slow the progression, and gene therapy offers a promising approach for treating MLD.
Minnesota Sickle Cell Data Collection program newsletter
The Minnesota Sickle Cell Data Collection program collects information about people with sickle cell disease to study long-term trends in diagnosis, treatment, and health care access for people with sickle cell disease in Minnesota. The primary goal of this data collection program is to improve quality of life, life expectancy, and health for those living with sickle cell disease.
Please sign up for the program’s newsletter by selecting “Minnesota Sickle Cell Data Collection Program” from the list of newsletter topics managed by MDH.
Follow Along Program
Index of standards survey - by July 1
The FAP index of standards is an optional self-assessment tool that defines local public health activities related to the coordination and delivery of community-level early childhood developmental and social-emotional outreach, screening, referral, and follow-up activities for families with young children. If you would like to take the self-assessment, please complete the survey no later than July 1. You will have the ability to download your responses as a PDF.
Semi-annual data reporting - by July 31
FAP collects two types of reports from all local public health agencies implementing the program:
- Semi-annual (6-month) report: January 1 – June 30, 2025
- Semi-annual (6-month) report: July 1 – December 31, 2025
Your FAP semi-annual (6-month) data report for January 1 – June 30, 2025 will be collected via a REDCap survey beginning on July 1. The shortened semi-annual data reporting form contains a question about ‘active’ vs. ‘new’ clients. Below is some guidance on how this can be calculated:
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If the reporting period is January – June 2025 we look at clients within and outside this range.
- Active clients are the total number of clients during the reporting period (continuing clients + new clients).
- Continuing clients are those who are not new during the reporting period but are still actively completing ASQs or being connected to resources.
- New clients are those who were enrolled during the reporting period.
- Active clients = new clients (enrolled within Jan. – June 2025) + continuing clients (from before Jan. 2025)
Please complete this process no later than July 31. As we continue to redesign FAP, including a new data system, please provide feedback at health.cyshn@state.mn.us with "local public health" in the subject line.
Invoicing – by Aug. 20
We encourage staff to invoice MDH every six months (e.g. half the annual award) in Feb. and Aug., following the semi-annual data submission deadlines in Jan. and July. Invoices reflect an amount for the general implementation of the program; CHBs are not expected to submit a budget by category of expense. After completing bi-annual data reporting for the program, please submit your invoice using the data reporting survey, the separate invoice survey, or send your invoice by email to health.cyshn@state.mn.us no later than Aug. 20.
June 19 - World Sickle Cell Day virtual event
In 2008, the United Nations officially designated June 19 as World Sickle Cell Awareness Day. This international awareness day is observed annually alongside Juneteenth. The goal of World Sickle Cell Day is to increase public knowledge and understanding of sickle cell disease and the challenges experienced by patients and their families/caregivers.
The Global Alliance of Sickle Cell Disease Organizations (GASCDO) recently announced this year’s theme: “Global Action, Local Impact: Empowering Communities for Effective Self-Advocacy.” The alliance will be hosting a 24-hour virtual sickle cell awareness event on June 19 where they will unite across time zones and boarders to amplify the voices of individuals and families affected by sickle cell disease, share inspiring stories of resilience and advocacy, discuss innovative solutions and best practices for sickle cell disease management and mobilize global support for sickle cell disease awareness, research, and policy change.
Visit the GASCDO website for more updates and registration details!
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June 24 – Newcomer health webinar series
This ECHO series is designed to increase medical providers' knowledge of the resettlement and health issues of newcomers, including refugee, immigrant and migrant populations. It will review resettlement pathways, evidence-based screening recommendations, and more common diagnoses and treatment approaches for pediatric and adult populations. Sessions include brief didactic presentations by immigrant health experts and discussion of participant-submitted cases. Participants are highly encouraged to submit de-identified patient cases for group discussion and expert consultation.
Please register for the final session in this series, Introduction to Newcomer Health in a Changing Landscape, which takes place at 10 a.m. on June 24.
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Resource Corner
Alongside Network
Alongside Network is working to shift the system of care for families who have a child with a life-threatening illness or injury, such that care for mental health is integrated throughout their hospital and recovery experience. Alongside Network also works directly with families to validate, connect, and support them as they adjust to life following a child’s life-threatening illness or injury. Parents and caregivers can participate in their Wellbeing Groups which focus on validation of experience, building community with other parents, and increasing coping skills. Groups run virtually (over Zoom) for 90 minutes per week for six weeks. They are co-facilitated by a clinical social worker and a lived-experience parent.
Inclusive playgrounds map
An updated inclusive playgrounds map is now available from the Inclusive Day of Play website. Accessible playgrounds are created to be inclusive to children of different abilities– including features for children with physical and developmental disabilities, such as wheelchair accessible swings, sensory stimulating equipment, and safety features. Please contact the park before visiting to ensure it has appropriate fencing, surface, equipment, signage, etc. for your family’s needs.
Technical support
Whether you need help troubleshooting or just have a quick question, the technical support contacts guide connects you to the right support. It is available on SharePoint under “Onboarding and Training” in the left-hand menu.
Invoicing
Condition follow-up invoicing is completed according to the following schedule:
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Date work/training completed
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Complete documentation by
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Invoicing month
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Jan. 1 to Mar. 31
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Mar. 31
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Apr.
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Apr. 1 to Jun. 30
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Jun. 30
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Jul.*
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Jul. 1 to Sept. 30
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Sept. 30
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Oct.
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Oct. 1 to Dec. 31
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Dec. 31
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Jan.*
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Follow Along Program semi-annual data reports are due every six months - by the end of each 'invoicing month' above marked with an asterisk (*). Follow Along Program invoices are due by the twentieth of the following month. So, for this cycle, data reports are due July 31 and invoices are due Aug. 20.
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About the CYSHN newsletter
Children and Youth with Special Health Needs (CYSHN) section staff at MDH work together to champion the health and well-being of people living in Minnesota with special health needs and disabilities, from the earliest states of life through transition to adulthood.
As the Child and Family Health Division works to coordinate and collaborate on communication, this newsletter may evolve to include a broader focus, but the following CYSHN programs are the primary focus: Birth Defects; Early Hearing Detection and Intervention (EHDI); Heritable Conditions (HC); Congenital Cytomegalovirus (cCMV); Critical Congenital Heart Disease (CCHD); Neonatal Abstinence Syndrome (NAS); and the Follow Along Program (FAP).
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