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Family Voices Resources
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- Fall 2018
- Fall 2019
- Fall 2020
- Fall 2021
- Fall 2022
- Issue 1 2023
- Issue 1 2024
- Issue 2 2023
- Issue 2 2024
- Issue 3 2023
- Issue 3 2024
- Issue 4 2023
- Issue 4 2024
- Spring 2018
- Spring 2019
- Spring 2020
- Spring 2021
- Spring 2022
- Summer 2018
- Summer 2019
- Summer 2020
- Summer 2021
- Summer 2022
- Winter 2018
- Winter 2019
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- Winter 2021
- Winter 2022
- Show all ( 13 ) Collapse
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- 1. Introduction and Overview
- 2. Is My Child Eligible for the CLTS Program?
- 3. Completing a Functional Screen
- 4. What to Expect After a Child is Determined Eligible
- 5. Developing Your Child's Individual Service Plan
- 6. Your Child's Service Plan: Creating Outcomes
- 7. What Services Might be Covered?
- 8. Appealing a Denial
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- Your Voice Counts #1: Introduction to Family Leadership
- Your Voice Counts #2: Being an Effective Advocate
- Your Voice Counts #3: Families Need to be at the Table
- Your Voice Counts #4: Participating in a Children’s Community Options Program Advisory Committee
- Your Voice Counts #5: Joining a Committee: Thoughts for Families
- Your Voice Counts #6: Overcome Barriers and Get Involved
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- Adult Long-Term Support Programs
- Exploring Self-Employment for Youth with Disabilities
- Financial Planning for Youth with Disabilities
- Healthcare Transition Planning
- Housing for a Young Adult with Disabilities
- Introduction to Integrated Transition for Youth and Families
- Planning for Employment
- Safety Planning for Life in the Community
- Transition for Youth with Mental Health Needs
- Youth Fully Participating and Engaged in Their Community
- A Medical Home: What Should I Expect from My Doctor
- ABLE Accounts
- Are You Tele-Ready? Making the Most of Telemedicine Visits
- Community Connections and Friendship for Children with Disabilities
- COVID Vaccines and Children with Disabilities or Complex Medical Needs
- Creating a Vision for Your Child’s Future
- Early Choices Matter: Children Building Choice-Making Skills
- Finding and Hiring Direct Caregivers
- Finding the Right Doctor for Your Child With Special Needs
- Inclusive Child Care for Children with Disabilities
- Insurance Prior Authorizations
- Katie Beckett Program: A Doorway to Medicaid for Children with Disabilities
- Making the Most of Doctors Appointments
- Medicaid and Non-Emergency Medical Transportation
- Medicaid Coverage for Diapers and Other Incontinence Supplies
- Medicaid HealthCheck "Other Services"
- Medicaid HMO Coverage for Diapers
- Medicaid Personal Care Services
- Medicaid: An Important Program for Children with Disabilities
- Medicaid: Appealing a Denial
- Preparing for Emergencies
- Private Duty Nursing: A Medicaid Covered Service
- Questions for My Health Plan or Insurance Company
- Respite Services for Children with Disabilities
- School and Community Based Therapy Services: Understanding Your Options and Avoiding Insurance Denials
- Self-Determination and Children with Disabilities
- Summer Camps
- Supplemental Security Income (SSI) and Children with Disabilities
- Supported Decision Making for Transition-Age Youth
- Transition - Health Coverage Options for Young Adults
- Wisconsin's Birth to 3 Program
- Wisconsin’s Guardianship Training Requirement: What Families Need to Know
- Working with a Fiscal Employer Agent
- Working with an IRIS Consultant
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- 2017 Listening Session Report
- 2018 Listening Session Report
- 2019 Listening Session Report
- 2021 Listening Session Report
- 2022 Listening Session Report
- 2023 Listening Session Report
- 2024 Listening Session Report
- 2025 Listening Session Report
- Advocacy for Change 2021, Evaluation Summary
- Advocacy for Change 2022, Evaluation Summary
- Shared Participation
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- Birth to 3 Program: Why is a Natural Environment Important?
- Birth to 3 Program: Why is Early Intervention Important?
- Care Map Instructions: Making a Care Map for Your Child
- Emergency Preparedness: Make a Plan
- Medicaid Coverage for Diapers and Other Incontinence Supplies
- Newborn Screening: What if Your Baby's Screening Results are Concerning?
- Newborn Screening: What is Genetics?
- Newborn Screening: What is Newborn Screening?
- Respite Care vs Personal Care: Is there a difference?
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Equity and Diversity
- Connecting with your Child with Intellectual and Developmental Disabilities about Racism, Police Brutality, and Protests
- Racial and Social Injustice (ep. 2)
- Structural Racism, Child Health and the Need for a Racial Equity Lens
- Understanding Racial and Social Injustice (ep. 1)
- Understanding Racial and Social Injustice (ep. 3): Mama’s Circle, Part 1
- Understanding Racial and Social Injustice (ep. 4): Dads' Round Table Talk
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Family Leadership
- Advocacy for Change Institute
- DHS: Statutory Boards, Committees, and Councils
- Find Your State Legislator
- Partners in Policymaking
- Speak Up - Finding Your Voice
- State-Level Committees and Councils
- Wisconsin Family Leadership Institute (WiFLI)
- Your Voice Counts #1: Introduction to Family Leadership
- Your Voice Counts #2: Being an Effective Advocate
- Your Voice Counts #3: Families Need to be at the Table
- Your Voice Counts #4: Participating in a Children’s Community Options Program Advisory Committee
- Your Voice Counts #5: Joining a Committee: Thoughts for Families
- Your Voice Counts #6: Overcome Barriers and Get Involved
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Family Support
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- Birth to 3 Program
- Birth to 3 Program: Why is a Natural Environment Important?
- Birth to 3 Program: Why is Early Intervention Important?
- Disasters and Emergencies - Keeping Children Safe
- Finding and Hiring Direct Caregivers
- Inclusive Child Care for Children with Disabilities
- Respite Care vs Personal Care: Is there a difference?
- Respite Services for Children with Disabilities
- Tips for Keeping Your Family Healthy this Summer
- Wisconsin's Birth to 3 Program
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- An Introduction to Special Education
- ARC Toolkit to Telling Your Story
- Children's Resource Centers
- Community Connections and Friendship for Children with Disabilities
- Emergency Preparedness: Make a Plan
- Finding the Right Doctor for Your Child With Special Needs
- How to Tell Your Story
- Starting and Sustaining Family Support Groups: Sustaining a Family Support Group
- Starting and Sustaining Family Support Groups: Virtual Support Groups
- Starting and Sustaining Family Support Groups: Where to Begin?
- Summer Camps
- Wisconsin’s Guardianship Training Requirement: What Families Need to Know
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Health Care
- A Medical Home: What Should I Expect from My Doctor
- Care Map Instructions: Making a Care Map for Your Child
- COVID Resource List
- COVID Vaccines and Children with Disabilities or Complex Medical Needs
- Glossary: Health Care Acronyms & Abbreviations
- Insurance Prior Authorizations
- Making the Most of Doctors Appointments
- Nursing Services for Students with Healthcare Needs
- Partnering with Your Child's Provider
- School and Community Based Therapy Services: Understanding Your Options and Avoiding Insurance Denials
- TIPS: Partnering with Your Child's Health Plan
- Youth to Adult Health Transition
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Long-Term Supports
- 1. Introduction and Overview
- 2. Is My Child Eligible for the CLTS Program?
- 3. Completing a Functional Screen
- 4. What to Expect After a Child is Determined Eligible
- 5. Developing Your Child's Individual Service Plan
- 6. Your Child's Service Plan: Creating Outcomes
- 7. What Services Might be Covered?
- 8. Appealing a Denial
- Children’s Community Options Program (CCOP)
- Early Choices Matter: Children Building Choice-Making Skills
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Medicaid
- Children's Long-Term Supports Program
- Find Your Federal Representative
- Forward Health - Health Care Programs
- Katie Beckett Program: A Doorway to Medicaid for Children with Disabilities
- Medicaid and Non-Emergency Medical Transportation
- Medicaid Coverage for Diapers and Other Incontinence Supplies
- Medicaid Coverage for Diapers and Other Incontinence Supplies
- Medicaid HealthCheck "Other Services"
- Medicaid HMO Coverage for Diapers
- Medicaid Personal Care Services
- Medicaid: An Important Program for Children with Disabilities
- Medicaid: Appealing a Denial
- Private Duty Nursing: A Medicaid Covered Service
- SSI Disability Starter Kit
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Mental Health
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Money Matters
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Recursos en español
Family Voices hojas informativas y boletines en español
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- Su vos cuenta #4: Participación en el Comité Asesor del Programa de Opciones Comunitarias para Niños de Wisconsin
- Su voz cuenta #1: Introducción al liderazgo familiar
- Su voz cuenta #2: Cómo ser un defensor eficaz
- Su voz cuenta #3: Las familias necesitan estar presentes en la mesa
- Su voz cuenta #5: Únase a un comité, Ideas para las familias
- Su voz cuenta #6: Supere barreras y participe
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- WITPP 10: seguridad en una vida en comunidad
- WITPP 1: Introducción a Una Transición Integral Para Jóvenes y Familias
- WITPP 2: Jóvenes participando e involucrándose plenamente con su comunidad
- WITPP 3: Transición para jóvenes con necesidades de salud mental
- WITPP 4: Planificación para Conseguir Empleo
- WITPP 5: Programas de apoyo a largo plazo para adultos
- WITPP 6: Vivienda para un joven adulto con discapacidades
- WITPP 7: Planificación para la transición de cuidados de salud
- WITPP 8: Planificación financiera para jóvenes con discapacidades
- WITPP 9: Exploración del trabajo independiente para jóvenes con discapacidades
- Apelación de un rechazo de Medicaid o BadgerCare
- Asociándose con el proveedor de su hijo
- Cobertura de Medicaid HMO para pañales
- COVID y la Seguridad Escolar
- Enfermera privada: Un servicio cubierto por Medicaid
- Organizaciones de Wisconsin que ofrecen recursos para familias con niños y jóvenes con necesidades de cuidados especiales de salud
- Preguntas para una agencia de salud mental
- Preparación para emergencias
- Servicios do terapia
- Vacunas de COVID y Niños con Discapacidades o Necesidades Médicas Complejas
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Telehealth
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Transition to Adult Life
- Adult Long-Term Support Programs
- Creating a Vision for Your Child’s Future
- Exploring Self-Employment for Youth with Disabilities
- Financial Planning for Youth with Disabilities
- Healthcare Transition Planning
- Housing for a Young Adult with Disabilities
- Introduction to Integrated Transition for Youth and Families
- Planning for Employment
- Safety Planning for Life in the Community
- Self-Determination and Children with Disabilities
- Supported Decision Making for Transition-Age Youth
- Supported Decision Making Guide - BPDD
- Transition - Health Coverage Options for Young Adults
- Transition for Youth with Mental Health Needs
- Working with a Fiscal Employer Agent
- Working with an IRIS Consultant
- Youth Fully Participating and Engaged in Their Community
- Youth to Adult Health Transition
- Show all ( 3 ) Collapse
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List of Fact Sheets
Starting and Sustaining Family Support Groups: Sustaining a Family Support Group
(#3 of 3 in Series)
Reviewed September 2025
Members of support groups find they are worthwhile because they offer comfort in shared experiences that create safe spaces to connect. Starting a support group takes time and energy to make the right environment, yet even with effort, not every group succeeds. There are things you can do though to keep your support group healthy and effective for all members.
Tips to Keep Your Group Healthy
- Have a strong, experienced facilitator, or meeting leader who can keep the discussion positive and productive.
- Make sure you have a core group of members who will start the discussion and keep the group on topic. Remind them in advance that they’re responsible to contribute to the conversation. This can bring the quiet members out of their shells.
- Assign roles to members to ensure all the tasks get done. These roles make members feel included and avoid burnout for the group leaders. The tasks can be anything for meetings like group promotion, securing a meeting place, bringing snacks or collecting names and email addresses.
A Facilitator Keeps Your Group on Track
A good facilitator can set things up for success. It may take some effort to find this person, so get feedback from the group’s core members on the best person for the job. By choosing a facilitator who can keep the group on topic and include every member in the discussion, your group can stay on track. The facilitator assures:
- all members are treated equally.
- everyone has the chance to share and speak.
- what’s shared in the space, is kept in the space.
- conflict or disagreements are handled appropriatel.
Finding New Members
Part of sustaining a support group is recruiting new members. Over time, your group will naturally change, especially if it provides support for families who have children in a specific age group or families going through a particular experience, like a child with a new diagnosis or starting school. Whatever your group’s focus, try some of these ideas to get the word out:
- Create social media accounts for your group and have core members keep this account active.
- Ask school staff and health care providers to share emails or post flyers.
- Submit your group meetings to community calendars and post information at your local library.
- Connecting with your regional Children’s Resource Center so they can invite new families.
- Encourage current members to talk with friends about the value of the group.
Sustaining a Virtual Support Group
Members’ interest might change, or time conflicts come up in any group. Here are some strategies for when these things bubble up:
Group Members are Distracted or Leave Early
- Offer to send activity kits or fidgets to parents before meetings to keep kids occupied.
- For virtual meetings, times should be short and meetings more frequent to keep members engaged.
- Make sure the meeting times are kept to their scheduled start and end times so parents can plan family time.
- Have an agenda for the meeting, so attendees have an idea of the topics that will be discussed and in which order.
Low Attendance
- Avoid busy times for members by sending online polls to find the best times and days to meet.
- Email members before the meeting to get people excited or intrigued about the topics. A same-day email reminder is also helpful.
- Be strategic in promoting the group by asking current members to be active in finding new members.
No One is Talking
- Have an active facilitator to draw out member comments.
- Have prompting questions ready and stick to topics or questions that encourage discussion.
- Take advantage of technology to create more engaging meetings. Examples include Zoom breakout rooms, polls or whiteboards.
- Have some members come to the meeting ready to talk and share.
- Use show-and-tell or other strategies and games to help members learn about each other.
Family Leadership Skill-Building
Facilitating a group is a bit of an art form that gets easier with practice. Take time to participate in skill-building sessions for family leaders to increase your confidence and skills.
- Wisconsin Family Leadership Institute (WiFLI): A series offered by Family Voices of Wisconsin to build leadership skills and connect with other family leaders.
- Serving on Groups that Make Decisions: Live webinars and online resources created by WI FACETS that explains how families can be influential members of a decision-making body.
Maintaining a healthy support group takes time and ongoing work, but your group can make a difference making families feel supported, connected and empowered.
INFORMATION AND RESOURCES
Wisconsin Wayfinder: Children’s Resource Network,877-WiscWay (877-947-2929): Wisconsin Wayfinder offers families one name and phone number to find services for children with special health care needs. Wayfinder connects you to a resource guide at one of the five Children’s Resource Centers in your area.
If you need this fact sheet as a pdf or other format contact Lynn at lynn@fvofwi.org.
Family Voices of Wisconsin, 2021© | familyvoiceswi.org
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