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National Down Syndrome Congress Releases State & Local Policy Advocacy Toolkit
The National Down Syndrome Congress (NDSC) State & Local Policy Advocacy Toolkit is designed to provide advocates with the tools, confidence, and resources needed to take action in their communities and states. Advocacy means using one’s story to create change, whether for oneself, for a family member, or on behalf of others with disabilities.
To access and download the toolkit, click here.
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“It’s the Most Wonderful Time of the Year.” Family Engagement at Theodore Roosevelt School #10
Andy Williams’ “It’s the Most Wonderful Time of the Year” rang true at Theodore Roosevelt School #10 in Passaic, New Jersey, as the school hosted its first Holiday Cheer Event on Friday, December 12, 2025. Open to students in grades K–6 and their families, the event welcomed more than 50 families and over 80 attendees for an evening of festive fun.
Families enjoyed photos with Santa and his elves, cookie decorating, hot cocoa, holiday games, themed photo stations, and holiday tattoos—all provided free of charge by school staff. Students gathered to take pictures, visit with friends, and create TikTok videos, while staff, the Action Plan Team, and school leadership joined in the celebration.
Beyond the fun, the event strengthened family engagement and created meaningful holiday memories for students and families, including those who may not always have access to such experiences at home. Theodore Roosevelt Elementary School continues to partner with the NJ Family Engagement Hub, working with Northern Regional Specialist Faith Victor to foster connection, inclusion, and community.
By Faith Victor, Northern Region Family Engagement Specialist, NJ Family Engagement Hub.
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What Families of Children with Medical Complexity Say About Their Family Well-Being
A recent publication in Pediatrics focuses on the well-being of families of children with medical complexity.
Family well-being (FWB) is a paramount outcome for all families and should be facilitated by clinicians, especially those caring for children with medical complexity (CMC). The US Department of Health and Human Services defines FWB as being “when all family members are safe, healthy, and have chances for educational advancement and economic mobility.” Distinct from family quality of life (perceived satisfaction with family life) and family functioning, coping, or resilience (being equipped to manage stress), FWB has been recognized as a critical outcome for system improvement efforts.
The article expresses that families of CMC—who have chronic conditions that affect multiple body systems—spend much of each day providing medical care for their child, and due largely to system shortcomings, they experience greater hardships and unmet needs.
To read the article and delve more deeply into this critical issue, click here.
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Protecting Your Care: Medicaid & SNAP Changes and How They Impact You
Monday, January 26, 2026
1:00 PM - 2:15 PM
Online
This free webinar from the Garden State Coalition for Care is for anyone who receives Medicaid or SNAP (Supplemental Nutrition Assistance Program) benefits, anyone who helps support them, and anyone who cares about protecting access to health care in New Jersey.
This includes people with disabilities, people with mental health or substance use needs, families, caregivers, providers, advocates, and community members.
At the conclusion of the information session, they will hold a Q&A to answer as many questions as possible. You may submit your questions in advance, upon registration.
To register, click here.
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Friday, January 23 is Maternal Health Awareness Day
For their fifth Maternal Health Awareness Day observance, The American College of Obstetricians & Gynecologists (ACOG) has chosen the theme Holding Ground on Maternal Health. They are inviting the public, policy makers, health care administrators, and stakeholders to join the ACOG community and their partners in reaffirming their staunch commitment to preventing maternal deaths and advancing respectful, evidence-based care.
To learn more about Maternal Health Awareness Day and what ACOG is doing to promote maternal health, click here.
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Upcoming Events
SPAN offers a variety of learning opportunities for families and the professionals who work with them.
Highlighted Event This Week
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Positive Solutions for Families Winter 2026 Series
The New Jersey Inclusive Child Care Project at SPAN presents Positive Solutions for Families.
Positive Solutions for Families is a multi-session, evidence-based program, designed to help families support the social-emotional needs of their young children (recommended ages 2-8 years), while also gaining resources to navigate behavior that challenges us as caregivers.
Register for the Winter 2026 Series (all webinars are 6:00 - 8:00 PM):
Jan 21: Making a Connection
Jan 28: Keeping it Positive
Feb. 4: Behavior has Meaning
Feb.11: The Power of Routines
Feb.18: Teach Me What to Do
Feb. 25: Responding with Purpose
Mar. 4: Putting it all Together with a Plan
To register, click here.
To learn more about the series, click here to watch an informative video.
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Turning Interests and Strengths Into Career Opportunities
Check out our latest youth blog post, "Turning Interests and Strengths Into Career Opportunities," to learn how youth and young adults with disabilities can discover what they are good at, explore careers that match their interests, and take steps toward future jobs.
To read the post, click here.
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