September brings several national and state awareness activities related to children and youth with special health needs– great opportunities to amplify important messages in your communities. 

• Folic Acid Awareness Week – Sept. 7–14: Share our social media posts, use resources from the National Birth Defects Prevention Network, and join the listening session and Q&A (see upcoming webinars, trainings, and events below). 

• Fetal Alcohol Spectrum Disorder Awareness Day (Sept. 9) and Month: Proof Alliance is sharing stories and resources on early recognition, informed educators, and supportive classrooms. Share their content to help raise awareness in your community. 

• National Sickle Cell Awareness Month: Promote resources from the Sickle Cell Foundation of Minnesota to highlight the need for research, treatment, and support for people with sickle cell disease. 

• Newborn Screening Awareness Month: Share the Minnesota Department of Health (MDH) social media posts and resources to raise awareness about the importance of newborn screening. 

Let’s work together to boost visibility for these important health topics this month. 

The Minnesota newborn screening program is aligning with new recommendations from the American Academy of Pediatrics on screening for critical congenital heart disease with pulse oximetry. The program has released a new protocol on the MDH website to reflect the change, which reduces the number of rescreens to one.

Please reach out to the newborn screening program in the public health lab at health.newbornscreening@state.mn.us if you have any questions. 

Pause on statewide quarterly meetings 

The Follow Along Program will be pausing the quarterly, statewide meetings. We will keep our FAP contacts informed about program updates or changes related to the redesign through ad-hoc meetings. Invites will be sent via email to the FAP contact lists and posted in this newsletter when time allows. We anticipate holding regular statewide FAP program meetings again when there is additional capacity. Thank you for your continued commitment and flexibility as we adjust to changes in this program at the state level. As always, email health.cyshn@state.mn.us with 'local public health' in the subject line for any questions or support you may need.

Family Voices of Minnesota is offering a series of Charting the LifeCourse Good Life Groups for Minnesota parents raising children with disabilities. Good Life Groups are collaborative learning groups where families use the "Charting the LifeCourse" framework to discuss, plan, and work towards achieving their vision of a fulfilling life for their family member with a disability. Families should plan to attend both sessions. Please register to attend. 

Sept. 25 – Family-led academic grand rounds 

A collaborative initiative between the University of Wisconsin’s Waisman Center, the Department of Pediatrics in the School of Medicine and Public Health, and the Bluebird Way Foundation has created five virtual Family-Led Academic Grand Rounds (FLAG Rounds) focused on ableism in pediatrics. These national, quarterly educational sessions will be led and presented by families. FLAG Rounds flips the traditional grand rounds model and embraces family as educators. Family faculty will present an aspect of their “case” as a story and then offer strategies to develop knowledge, skills and abilities to perform, or partner in, the essential activities of care of children with disabilities and/or medical complexity. Register for the September 25th grand rounds or view past grand rounds.  

On Friday, Oct. 10 at noon, receive an introduction to language acquisition (definition, factors, support available) from Dr. Onudeah Nicolaraski, early childhood Deaf and Hard of Hearing educator. Then, at 1:15 p.m., learn from Quinn Kelly, bilingual speech pathologist, as she discusses how Augmentative and Alternative Communication can be used to support Deaf and Hard of Hearing students' American Sign Language acquisition and expression. 

This series is hosted by BrightWorks and the Minnesota Department of Education. To register, visit BrightWorks Learning Stream and use code MNDHH for free registration for Minnesota professionals.   

Nov. 13 – CYSHN condition follow-up virtual community of practice 

The next community of practice meeting for Children and Youth with Special Health Needs condition follow-up program contacts is Thursday, Nov. 13 from 9 - 10:30 a.m. These meetings provide routine opportunities for local public health nurses who provide follow-up for children referred by CYSHN programs to learn condition-specific information and discuss nursing practice. The November meeting will include a presentation about Sickle Cell Disease from Rae Blaylark from the Sickle Cell Foundation of Minnesota and Amanda Maresh from the CYSHN longitudinal follow-up unit at MDH. We will be offering one contact hour of continuing education for attending.  

All current CYSHN condition follow-up local public health nurses are welcome to attend. Please register for this virtual, optional meeting. If you have any questions you would like to submit in advance, email them to dana.janowiak@state.mn.us.  

The Minnesota Department of Education’s Division of Early Education, in partnership with Unite for Literacy, has launched the Minnesota READs Library — a state “bookshelf” designed to support multilingual learners, their families, teachers, and caregivers. 

MDH has launched a new cannabis materials webpage to share cannabis education resources for individuals who are pregnant, plan to become pregnant, or are breastfeeding or chestfeeding. 

A prevention and education campaign is being planned, with the help of local partners across Minnesota to help guide the direction of this work. Please contact Jessica Easter at jessica.easter@state.mn.us with questions. 

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.  

• The LPH partner resources webpage also contains useful materials for CYSHN programs– including Birth Defects, EHDI, Heritable Conditions, and cCMV. You do not need a login to view or download materials. Some materials, like videos and Follow Along Program resources, are still only available on our SharePoint. 

• Please contact health.cyshn@state.mn.us with “local public health” in the subject line if you have any questions.   

Complete nursing follow-up documentation in MEDSS by the end of the quarter after the one in which the referral was made. For example, if the date the event was sent to local public health is July 15 (in quarter 3), the follow-up documentation should be submitted by Dec. 31 (the end of quarter 4).  

Invoice letters are sent to local public health by MDH in the month following the end of the quarter in which documentation was submitted, or training was completed. So, in the example, the invoice letter would be sent to local public health some time before Jan. 31 (the month following the end of quarter 4). 

Follow Along Program 

Follow Along Program semi-annual data reports are due every 6 months. Data for quarters 1 and 2 are due July 31. Data for quarters 3 and 4 are due January 31. Invoices for quarters 1 and 2 are due August 20. Invoices for quarters 3 and 4 are due February 20. Semi-annual data reports must be received prior to the invoice being paid. 

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).