Greetings to our VFN Family and Friends.

At Vermont Family Network, we stand for equity, access, and inclusion. One of the many stances we have that I can personally identify with is empowering parents for better healthcare policy and advocating for a better healthcare system. As parents, we all share a common concern: the health and well-being of our children. Yet, navigating the complexities of healthcare can often feel like an overwhelming challenge. That's why it's crucial for us to come together and advocate for policies that prioritize the needs of our families.

Our current healthcare system is plagued by numerous challenges that directly impact our children's access to quality care. From skyrocketing medical costs to disparities in coverage and limited access to essential services, it's evident that there's much room for improvement.

One of the most pressing issues facing parents today is the lack of affordable healthcare options. Many families struggle to afford basic medical care, let alone specialized treatments or medications that their children may require. This financial strain not only affects our children's health but also adds tremendous stress to our lives.

Furthermore, disparities in healthcare access persist, particularly among marginalized communities. Too often, families from low-income backgrounds or minority groups face barriers to receiving timely and appropriate care. This inequity only serves to exacerbate existing health disparities and perpetuate cycles of poverty and illness.

But there is hope. As parents, we have a powerful voice that can drive meaningful change in healthcare policy. By coming together and advocating for reforms, we can ensure that our children receive the care they deserve. At VFN, we have and will always continue to advocate for change.We must push for policies that make healthcare more affordable and accessible for all families. This includes measures to lower prescription drug costs, expand insurance coverage, and increase funding for community health centers. By addressing the financial barriers to care, we can ensure that no child goes without the medical attention they need.

Additionally, we must advocate for policies that promote health equity and address disparities in care. This means investing in programs that target underserved communities, improving cultural competency training for healthcare providers, and tackling social determinants of health such as poverty and systemic racism. By prioritizing equity, we can create a healthcare system that works for everyone, regardless of their background or circumstances. Read more...

From the heart,

Jacqui

Many Thanks to All of You!

VFN 2024 Conference

“Change Begins with You – Using Your Voice to Make a Difference”

Our 2024 Annual Conference was held on April 2, 2024, at the UVM Davis Center. THANK YOU to the over 120 participants who joined us for a full day of learning, networking and becoming empowered to advocate for those issues that impact the lives of our own families, our community members and/or those we work with.

A special thanks to former South Burlington State Representative to the VT House, Maida Townsend, who inspired us by sharing how our stories matter and impact decision makers in a meaningful way. A big thank you to our featured presenter, Amy Shollenberger, from Action Circles who brought us so many wonderful insights about how the legislative process works and helped us understand how building relationships with our legislators and the way we say things to them really matters!

Thank you to this year's sponsors!

Platinum Level

• Children with Special Health Needs at the Vermont Department of Health

Gold Level

• HireAbility Vermont

Silver Level

• College of Nursing and Health Sciences, University of Vermont
• SD Associates
• University of Vermont Children's Hospital

Bronze Level

• Building Bright Futures
• Northwestern Counseling and Support Services
• Rutland Regional Medical Center
• University of Vermont Center on Disability and Community Inclusion
• Vermont Children’s Integrated Services – Early Intervention
• Vermont Developmental Disabilities Council
• Vermont Department of Labor

Thank you to this year's exhibitors!

• Therap Services
• EDD Adaptive Sports
• The Stetson School
• Prevent Child Abuse VT
• Project SEARCH
• VT Department of Libraries – ABLE Libraries
• The OSHER Center for Integrative Health
• Disability Rights VT
• Public Assets Institute
• College Steps
• Caffrey Law, PLLC
• VT Legal Aid – Disability Law Project – Client Assistance Program
• VT Human Rights Commission
• Voices for Vermont’s Children
• HireAbilityt VT
• Children with Special Health Needs
• SD Associates
• University of Vermont Center on Disability and Community Inclusion
• Northwestern Counseling and Support Services
• Vermont Department of Labor
• Vermont Developmental Disabilities Council
• Building Bright Futures

Grant Funds Available!

Doug Flutie, Jr. Foundation for Autism

Vermont Family Network is pleased to announce that we have received a $10,000 grant from the Doug Flutie Jr., Foundation for Autism. Families who have children (from birth to age 22) with an autism diagnosis may request up to $200 for needed equipment, respite, camp, therapies, emergency childcare, or to attend a conference related to their child's diagnosis.

We encourage families from rural areas (e.g. Bennington, Essex, Orleans and Windham counties) to apply. One grant per household.

The Doug Flutie Jr., Foundation for Autism based in Framingham MA, awards grants annually through a competitive application and review process. The signature grants that the Flutie Foundation distributed this year support traditionally under-served, under-funded, culturally diverse communities reflected in the Foundation’s area of interest by providing a path for educational and vocational skills, supporting recreational and active lifestyles, and ensuring people with autism are safe, supported and informed.

Please visit Get Support to complete an application. If you have questions or need support in completing an application, please email laurel.sanborn@vtfn.org or call 802-876-5315.

Graduation Ceremony Participation for

Students in Special Education

Vermont's "Walk with your Class" law applies to all students who, because of their disability, need to remain enrolled in school after graduation to complete their secondary education, including transition-related services. This means that even if your high schooler will be remaining in school beyond their senior year, they can participate with their peers in the graduation ceremony.

For information on any transition to adulthood-related concern, check out the VFN Transition Toolkit for Youth with Disabilities. If you have questions about your high-schooler and their options, please contact the VFN Family Support Program at 802-876-5315 or info@vtfn.org.

Have you Ever Wondered About Being a

Trained Support Parent?

After completing our two short training sessions you will be ready to connect with other parents in similar situations and support their own journey. We have two upcoming options for the live Zoom portion of the Support Parent training:



• Thursday, April 11, 12:00 – 2:00 p.m.
• Wednesday, April 17, 6:00 – 8:00 p.m.



The 2- Part training is short and easy (A 2-hour Zoom training and a self-guided PowerPoint). Parent matches do not require much time. The average trained support parent texts and emails a few times with the referred parent and speaks on the phone once or twice. Requests to serve as a trained support parent are sporadic, and can be infrequent to a few times a year, depending on the specific diagnosis or condition that is requested. A trained support parent always has the option to say, “I am too busy to take this on right now.”

You do not have to be an expert. Being able to listen with compassion and maintain confidentiality are the most important skills. You are never alone. VFN match facilitators are available to support any questions that arise. Volunteering as a trained support parent makes a huge difference to a parent who is experiencing a new diagnosis, bump in the road, or transition, etc. Referred parents report that just being able to connect with another parent “who gets it” reduces their stress and anxiety.

Please consider being a trained support parent. As one parent to another, your listening ear can make a huge difference. Questions or to register for the upcoming training, contact Marie.fetterhoff@vtfn.org.

Sign Up for the

VFN Policy & Advocacy Newsletter

We are excited to announce that Vermont Family Network’s Policy and Advocacy work is back and more dedicated than ever to advocating for public policies that support children, youth, and families in Vermont and beyond. Our primary focus is on supporting children and youth, particularly those with disabilities or special health needs and their families, and we work tirelessly to maximize our impact on policies that affect them. We collaborate with family leaders, self-advocates, and youth with disabilities or special health needs to develop legislative platforms and provide assistance with testimony, whether it's written or spoken. To stay informed about Education, Health, and Mental Health legislation in Vermont and to have your voice heard, sign up for our Policy and Advocacy Newsletter.

Register for the 6th Annual Youth Summit

The Youth Advocacy Council, a group of youth and young adults with disabilities, supported by VFN and other partners, are inviting youth and the adults who support them to attend the 6th Annual Youth Summit "Transition, Accessibility, Community." Hear members’ stories around self-advocacy and join in the conversation about transition to adulthood, accessibility, and community!

May 29th, 2024 from 10:00 a.m. to 1:00 p.m.

Hilton Double Tree, South Burlington

Educational Surrogate Parents

The Individuals with Disabilities Act (IDEA) gives parents an active role in their child’s IEP team, from special education evaluation to IEP planning to monitoring their child’s progress. If parents or family members of a child with a disability are not known or available, an education surrogate parent will act in this role.

Department of Children and Families (DCF) manages the intake process and the Vermont Agency of Education coordinates the Vermont Education Surrogate Parent Program. Like parents, education surrogate parents of children with disabilities are granted a significant decision-making role and are involved at every step of the special education process. Here at VFN, we help Vermont Education Surrogate Parent volunteers the same way we provide support to parents.



If you have any questions about the rights of parents or education surrogate parents of children with disabilities, please contact the VFN Family Support Program at 802-876-5315 or info@vtfn.org.

Funding for Families is Available!

VFN has two respite funds available to families who are not currently receiving respite funding from other resources. Respite is a planned break for parents or caregivers, which allows time to spend with other children, to schedule necessary appointments, or to have an opportunity to rest and recharge.

VFN’s Family Support Fund is for Vermont families with children up to 21 years of age who have a chronic physical, medical, or developmental condition. A family’s annual income must be at or below 500% of the Federal Poverty Level. They can access up to $1200 per grant year (maximum initial respite request is $600.)

This fund is made possible through a generous grant from the Vermont Department of Health’s Children with Special Health Needs (CSHN) program. It also includes Medically Necessary Supplemental Funding for families who have out-of-pocket medical expenses not covered by insurance. Please contact joanne.wechsler@vtfn.org for more information.

Our Vermont Respite Support Program is for Vermont families with children up to 19 years of age who have a chronic physical, medical, mental, or developmental condition OR:

• are experiencing circumstances such as: homelessness, economic hardships, and/or DCF Family Services involvement
• are suspected of a diagnosis and waiting for an evaluation
• require health and related services of a type or amount beyond that required by children and youth generally

You may also be eligible if you are:

• a parent/caregiver with a disability that has a child (up to the age of 19) living at home
• a relative caregiver with a child(ren) living with them
• a parent/caregiver of an adopted child(ren)

Families may access up to $1000 per year through a voucher reimbursement process. This fund is made possible through a generous grant from the Vermont Department of Children and Families-Child Development Division. Please contact laurel.sanborn@vtfn.org for more information.

Puppet Spotlight on: Our Anxiety Program

In 2019, the puppets started work on a new puppet program about Anxiety, thanks to funding by the Vermont Department of Mental Health. The pilot version of our Anxiety Puppet Program debuted in January 2020. It was highly requested and was performed at six schools before Covid shut down schools and ended our performance schedule for the school year.

Never one to back away from a challenge, the puppets pivoted (or pirouetted, as we preferred) to an online format. We created a virtual puppet program that we offered to all schools in the fall. It included a professional video of the Anxiety program along with live interactions between a puppet and an adult. Students were eager to share their worries and experiences with us, even online.

In the spring of 2021, we debuted our Anxiety Workshop for middle school students. We were still virtual, so the workshop included a PowerPoint presentation, fun videos, and plenty of time for the students to share and ask questions of their own.

In the years since the original script was written, both the puppet program and the workshop have undergone multiple transformations. In 2022, we briefly shifted the puppet program to “kindness and stress” when we realized that when kids went back to school, they struggled with both stress and finding ways to be kind to each other.

Our Anxiety Puppet Program and Workshop remain one of our top-ten most requested shows from schools. They help schools reinforce the social-emotional learning techniques being taught in classes. And the Worry Octopus remains a student (and puppeteer) favorite!

Genetics Corner

Let’s do some jargon busting this month! What is a variant of uncertain significance, or as it is often referred to a VUS? Simply stated, a VUS is a variant of genetic code that doctors do not have enough evidence or information to know if that specific variation causes a genetic condition or disease. This can happen if a variant is very rare in a population so there is not enough information yet. There can also be conflicting information, meaning that sometimes it appears to cause a condition and sometimes it does not.

It is important to work closely with a genetic counselor and genetic specialists to help understand your particular VUS. As doctors and scientists learn more, a variant may be reclassified to either be disease causing or not. To learn more about VUS, watch this video created by the Mountain States Regional Genetics Network with finding from HRSA. If you or a family member have more questions about VUS or would like to speak with a genetics navigator, please reach out to VFN at info@vtfn.org.

Wellness Window

Avoiding Caregiver Fatigue

with Self-Care 

Self-care has become a popular term in our post-COVID world. That's an excellent term to normalize because each family member should prioritize focusing on their well-being, even if it's just for a short while. By doing so, they can step back from their roles and responsibilities, better manage stress, and return to their loved ones with a refreshed perspective. 

To prioritize self-care, families can use five key strategies: 

• Take regular breaks from the daily routine to prevent burnout.
• Nurture the relationship with your partner to maintain a strong family foundation.
• Connect with others and share your experiences to feel less isolated.
• Use mindfulness techniques, such as guided meditations, to find moments of calm amidst daily stressors.
• Set aside time to bond with your other children and extended family members. 

Caring for someone around the clock can be highly demanding, but it's essential to establish specific strategies to ensure self-care. Start by identifying appropriate caregivers for your child, such as school staff, therapists, respite care providers, grandparents, or a co-parent. Schedule non-negotiable self-care time in your calendar and communicate it with your child's caregiver. Lastly, streamline your tasks by automating and delegating wherever possible so you can prioritize self-care activities. 

Embracing self-care may require planning and effort, but it becomes more natural with practice. Remember that investing in your well-being is worth it and will positively impact you and your family. 

Free Workshops

April 15 at 11:00 a.m. Register for "Accessibility in College After High School: Knowing Your Needs, Understanding the Process, and Who to Talk To"

There are a lot of unknowns when making the transition from high school to college. This presentation hopes to reduce some of the mystery as it relates to receiving services for students with disabilities. We will review the differences between accommodations in high school and college as well as general processes and best practices for pursuing access.

Presenters: Marie Frietze - ADA Resource Coordinator and Angie Albeck - Associate Dean of Students, both at the Community College of Vermont

May 14 at 1:00 p.m. Register for "Sharing Information with Siblings"

Join us for a panel discussion with parents and adult siblings about their experiences discussing disability, challenges, benefits, and everything in between! Emily Holl, Director of the Sibling Support Project, will provide tips for sharing key information at different stages of life with young siblings, teens, and adults to create positive outcomes for the entire family. Presenter: Emily Holl - Director of the Sibling Support Project

If you are unable to attend, you can still register and we’ll send you a

recording of the workshop which you can watch on your own time.

Registrations are also posted under Upcoming Events on the landing page of our website. In case you missed our last series of workshops, you can find a full list on our VFN website. Stay tuned as we add more workshops to our schedule!

We save workshops on our website and YouTube channel.

Join our closed Facebook group specifically for parents of adult children

Join our closed Facebook group

for all parents

Contact our Helpline at (802) 876-5315 or info@vtfn.org