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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 2 2023
- Issue 3 2023
- Issue 4 2023
- Spring 2018
- Spring 2019
- Spring 2020
- Spring 2021
- Spring 2022
- Summer 2018
- Summer 2019
- Summer 2020
- Summer 2021
- Summer 2022
- Winter 2018
- Winter 2019
- Winter 2020
- Winter 2021
- Winter 2022
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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: What Wisconsin Families Need to Know
- Are You Tele-Ready? Making the Most of Telemedicine Visits
- Birth to 3 Program: A Family Perspective
- Community Connections and Friendship for Children with Disabilities
- COVID and School Safety: Options for Children with Disabilities or Complex Medical Conditions
- 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: Appealing a Denial
- Medicaid: Explaining and Exploring Wisconsin Medicaid
- 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 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
- 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: A Family Perspective
- 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
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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
- COVID and School Safety: Options for Children with Disabilities or Complex Medical Conditions
- Emergency Preparedness: Make a Plan
- Finding the Right Doctor for Your Child With Special Needs
- How to Tell Your Story
- Organizations to Assist Families
- Sports and Recreation
- 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: Appealing a Denial
- Medicaid: Explaining and Exploring Wisconsin Medicaid
- Private Duty Nursing: A Medicaid Covered Service
- SSI Child 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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- 1. Introducción y descripción general
- 2. ¿Mi hijo es elegible para el programa de exención para CLTS?
- 3. Completar una evaluación funcional
- 4. Qué esperar después de que se determina que un niño es elegible
- 5. Desarrollando el Plan Individual de Servicios de su Hijo
- 6. Plan de servicios de su hijo: Creando resultados
- 7. ¿Qué servicios se podrían cubrir?
- 8. Apelando una denegación
- Programa de Apoyoa Largo Plazo para NiñosHojasInformativas-Enero de 2019
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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
- Aprovechar al máximo las citas médicas
- Asociándose con el proveedor de su hijo
- Autodeterminación
- Autorizaciones Previas del Seguro
- Búsqueda de personal para respiro y cuidados personales
- Búsqueda y Contratación de Cuidadores Directos
- Cobertura de Medicaid HMO para pañales
- Cobertura de Medicaid para pañales
- COVID y la Seguridad Escolar
- Cuentas ABLE - Lo Que Las Familias de Wisconsin Necesitan Saber
- Cuidado Infantil Inclusivo para Niños con Discapacidades
- Cuidados de relevo para niños con discapacidades
- Decisiones Hechas con Apoyo
- Eligiendo Al Doctor Correcto
- Enfermera privada: Un servicio cubierto por Medicaid
- Hogar Médico
- Katie Beckett Medicaid
- Los Servicios de Cuidado Personal Y Medicaid
- Medicaid HealthCheck “Otros Servicios”
- Medicaid: Explicando y Explorando Wisconsin Medicaid
- Medicaidy el transporte a citas médicas
- Opciones de cobertura de la salud para jóvenes
- Organizaciones de Wisconsin que ofrecen recursos para familias con niños y jóvenes con necesidades de cuidados especiales de salud
- Preguntas para mi plan de salud o compañía de seguros
- Preguntas para una agencia de salud mental
- Preparación para emergencias
- Programa desde el nacimiento hasta los 3 años: Una perspectiva familiar
- Requisito de capacitación para la custodia en Wisconsin: Lo que las familias deben saber
- Seguro de ingresos suplementario y niños con discapacidad
- Servicios do terapia
- Soñar e imaginar el futuro de su hijo
- Trabajar con un agente fiscal del empleador
- Trabajar con un Consultor de IRIS
- Vacunas de COVID y Niños con Discapacidades o Necesidades Médicas Complejas
- ¿Estás tele-listo/a?
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Telehealth
- Are You Tele-Ready? Making the Most of Telemedicine Visits
- Internet Connectivity Program in Wisconsin
- Internet Resources for Wisconsin Residents during Public Health Emergency
- Telehealth Glossary
- Telehealth Security
- Telehealth Webinar 1: Are You Connected?
- Telehealth Webinar 2: Do You Have a Device?
- Telehealth Webinar 3: Can You See Your Provider?
- Telehealth Webinar 4: Your Family's First Telemedicine Appointment
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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
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Your Voice Counts: Introduction to Family Leadership
(#1 of 6 in Series)
Reviewed July 2024
You are an advocate for your children at school, the doctor’s office and in your community. These experiences show the importance of using your voice, especially when decisions about your child’s future are being made. Being a family leader extends the advocacy skills you already have, to benefit all families.
A Family Leader Is:
- Someone who brings their voice and family experiences to the leadership table as part of a community-based group, committee or board.
- Advocating for the needs of your child and the wider community.
- Using your ideas and opinions to be part of the solution.
- Working collaboratively with others to create lasting improvements.
Family leadership looks different for everyone. It can vary in different settings, but it always includes efforts to improve the lives of families and children. Here are some of the ways family leaders can make a difference.
Support Other Parents as a Mentor or by Starting a Support Group
Families who are beginning their disability journey can benefit from the knowledge and experiences of families who are farther along the path. Organizations offer training to mentor parents and provide matching services for parents seeking 1-on-1 support. You can also plan family gatherings or start a parent support group where families can share information and work together to find solutions to problems.
- Become a P2P Support Parent: One option to provide one-on-one support to another Wisconsin parent is to become a Parent to Parent (P2P) support parent. Contact Parent to Parent of WI(P2PWi.org) to learn about their training and mentorship opportunities. In addition, the Waisman Center’s Connecting Families project offers parent matching. Learn more: connectingfamilies.waisman.wisc.edu.
- Start a Support Group: If there isn’t a group in your area, you and other parents can start a group and network with others. This could be in-person or virtual. Family Voices has a series of fact sheet to get you started. Find our Starting and Sustaining a Family Support Group in our Resource Library.
Join a Committee or Advisory Group
The family point-of-view is valuable to community organizations and agencies. Your perspective makes these groups more effective at supporting families and children. Families often serve in advisory roles, provide outreach and develop or lead projects. As a group member, you learn more about the organization and can impact how it works to help other families access necessary resources as early as possible. To learn more, see the Family Leader Fact Sheet #5 Joining a Committee: Thoughts for Families
Impact Policy and Systems Change
Policy and systems change, or policy advocacy, involves family leaders at the decision-making table, the podium and in legislators’ offices to shape the policies and program budgets that impact them. Families in this role often share personal stories and recommendations for policy change. This may even lead to a run for elected office or another professional position, carrying your experiences as a family advocate with you. To learn more, see the Family Leader Fact Sheet #3 Families Need to be at the Table.
Tip for Families!
Jumpstart your policy advocacy efforts by attending Advocacy for Change, Family Voices of Wisconsin’s annual legislative day. Families speak with their elected officials and sign up for legislative alerts to learn when their voice is needed. You can find all our family leadership resources at familyvoiceswi.org/family-leadership
Family Leadership Skill-Building Opportunities
Wisconsin has many learning and skill-building opportunities for families who want to take the next step.
Wisconsin Family Leadership Institute (WiFLI)
Offered by Family Voices of Wisconsin, WiFLI uses exercises and practice to help participants increase their capacity and confidence to be part of the decision-making process.
- WiFLI: Foundations provides the building blocks to extend the advocacy you are already doing. From telling your story workshops, to understanding how boards and committees work, these sessions will get you started on your family leadership journey.
- WiFLI: Advanced takes your existing leadership experiences to the next level with a deep dive into leadership methods, roles and experiences. Some of the topics covered include strategic thinking in advocacy, imposter syndrome, managing emotions and finding leadership opportunities.
Partners in Policymaking
These Board for People with Developmental Disabilities sessions cover advocating for policies that support full participation and inclusion of people with developmental disabilities. There is a focus on policy and systems change, advocacy, community organizing and the legislative process.
Serving on Groups that Make Decisions
This is an online resource created by WI FACETS that explains how families can be influential members of a decision-making body. The materials focus on group participation in educational settings, but the tools provided can be applied to any environment. These materials are also available in Spanish.
Support Parent Training Sessions
These sessions are Parent-to-Parent of Wisconsin’s workshops for parents or family members who would like to serve as a volunteer mentor to another parent who has a child with disabilities or special health care needs. These sessions focus on listening, methods to give support and more.
Families as Partners
Presented as the Wisconsin Statewide Parent Educator Initiative (WSPEI), these virtual sessions cover supporting your child’s education and learning, school/staff connections, skills for collaboration and advocating in IEP settings, and more.
You Have the Most Important Skills! You have the desire and the confidence to see yourself as a leader. The opportunities we’ve listed will guide your learning, strengthen your confidence, and build your skills. You are already a leader in your family—Now, it’s time to take the next step and become a leader on behalf of other families!
Need a Mentor or Someone by Your Side?
If you would like support joining a committee, applying for membership on an advisory group, or getting more involved in family leadership in other ways, we are here to assist you! Contact Family Voices of Wisconsin and let us know what you need! Email Danielle@fvofwi.org.
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.
Family Voices of Wisconsin, 2024© | familyvoiceswi.org
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