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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: Being an Effective Advocate
(#2 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.
Advocate: To speak up, promote or to support a cause, policy or action.
Families Are Effective Advocates
Advocacy is a powerful way to improve programs. Change happens when families let decision-makers know what is working, what needs improvement, and what can make a program or service more effective.
Speak Up
Share your ideas for improving a program or service. Use your voice to let professionals know what works best for your child and family at medical and therapy appointments, or with your child’s IEP team.
Don’t Let Fear Silence You
Speaking to professionals might feel intimidating. Remember that while they might be the expert in their field, you are the expert on your family and your child. Be confident. It is possible to be kind and respectful while being assertive. If the topic is your family, you understand it better than anyone. Use that knowledge to push through any anxiety you may have about public speaking.
Focus on Your Passion
Do you feel strongly about education? Are you concerned about the lack of caregivers available in your community? Your personal experience with programs and services provides an opportunity to make a difference. Start with research to find out which decision-makers run the program, agency or service that you want to improve. Reach out, share your experience, and add your suggestions.
Offer a Solution
Share your experience with a program and how it could have been better. Make sure any suggestions you offer are reasonable, achievable and work toward a better outcome for all families.
Use Your Family Story in Your Advocacy
Stories are what legislators and other decision-makers remember. They make the problems real and deepen the listener’s understanding of your issue. Stories also guide decision-makers to find connections in their own lives through friends or family members who have had similar experiences. Choose a small slice of your family’s story to illustrate how a program is working well or could be improved for all families.
Tip For Families!
Clinics, hospitals and medical equipment providers send out satisfaction surveys after appointments. Take the time to provide honest feedback. You may have insights and ideas that can improve services for all families.
Don’t Worry about What You Don’t Know
Professionals have access to facts and figures, but families bring real-life stories and experiences that others cannot. Your first-hand knowledge of the issue can lead to better and more effective practices. Speak from your heart to allow decision-makers to see your passion. You have contact with these programs and services. If a decision-maker asks a question you can’t answer or need more information on, it’s okay to say that you don’t know or that you will get back to them with more details.
Do Your Homework
Before meeting with an elected official or other decision-maker, find out how your situation impacts others. For example, if you’re struggling to find in-home direct care workers, explore how the shortage of workers affects others in your community. Or, if your child’s education is directly impacted by a lack of funding, find out if other schools in your area are experiencing that same problem, and bring that information to the discussion.
Represent All Families Fairly
Before meeting with decision-makers or speaking at a public hearing, talk to other families. Ask if their experiences or challenges are like yours. It will make your message more impactful if your message represents many families.
Get the Support You Need
Decision-makers want your input, and they understand that it might be hard for you to attend meetings on their schedule. Don’t be shy about asking them for the support you need to take part. Ask if it’s possible for you to participate virtually by phone or video. Ask about stipends if the cost of childcare prevents you from joining a meeting. Or, if transportation is difficult for you, see if another member can give you a ride or if the agency or host organization can help pay for a ride.
Finally, show up ready to participate!
The Family Voices of Wisconsin’s Advocacy Toolkit has videos, worksheets and more to guide your advocacy efforts. Find it at familyvoiceswi.org/family-leadership/#advocacy-toolkit.
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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