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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
- 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
- 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
- Preparing for Emergencies
- 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
- 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
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List of Fact Sheets

Making the Most of Doctors Appointments
Reviewed June 2025
If the thought of an appointment with your child’s doctor causes a little stress, these tips will help you and your child with special health care needs get the most out of every doctor’s appointment.
Before the Appointment
Be Prepared
Be ready to talk about your child’s condition(s) using facts and specific examples that explain your concerns. The best way to remember everything is to have it written down, or available on your phone. Time is valuable and coming to these visits prepared will make them more productive for you and your child’s doctor.
Be Focused
Know how you want to answer the question, “What is the reason for your visit today?” You will only have time to bring up a few concerns at each visit so decide in advance which issues are most important to discuss with your doctor.
Keep a Care Notebook
Use a care notebook, an online app or a desk calendar to track the different things you notice in your child’s behavior, illness, temperatures, eating habits or anything else that your child’s provider may need to know.
Keep Medical Records
You have the right to copies of your child’s medical records including tests, procedures and their results. Also, if you are able, sign up for MyChart, or other online system used by your health system. This makes accessing medical records quick and easy.
Prepare Your Child
Tell your child what to expect, who you will be seeing, why this appointment is important, and the tests that may be done. For younger children, bring a comfort item, some fidgets, a snack and some books to keep them occupied while you speak with the doctor.
Tip for Families
You know your child best so follow your instincts! If you aren’t comfortable with your child’s diagnosis or treatment plan, speak with the provider right away.
During the Appointment
Ask Questions
Doctors want you to ask questions! And don’t be embarrassed to ask for an explanation if you don’t understand something the doctor has said.
Do Your Part
Be an active listener and take notes during the appointment. You cannot control how well another person listens, but you can make sure you’re doing your part.
Make Sure You Understand
Ask your child’s doctor to explain the care or treatment plan and put it in writing. Then, repeat the care plan back to the doctor as you understand it.
Remember the Dates
Keep track of target dates for getting test results or discussing a specialist’s suggestions in your child’s care notebook and follow up on them by sending a message to your child’s doctor.
Be Organized
If you don’t have time to get answers to all of your questions at the appointment, leave your list with the doctor and ask for a call to discuss them. Also ask when you should expect to hear back and don’t be afraid to follow up with the clinic if you have not heard back in a reasonable about of time.
Think Team Effort
If you think that there will be major information, diagnosis or treatment plans discussed at the appointment, bring a trusted friend or family member along to listen and take notes for you.
After the Appointment
Have Confidence
Ask for a second opinion if you feel it is needed.
Look for Progress and Side Effects
If your child’s medication, or other treatment, doesn’t seem to be helping, you’re seeing side effects, or have any other concerns, trust your instincts! Contact the clinic right away and explain your concerns.
Change Doctors, if Necessary
If, after several appointments, you don’t feel that your concerns are being heard or there are on-going problems coordinating your child’s care with this doctor, you may want to think about changing providers. See the Family Voices fact sheet Finding the Right Doctor for Your Child for more information on this process.
Tip for Families
The American Academy of Pediatrics Healthy Children website has helpful resources to track your child’s health and well-being. See their online Symptom Checker.
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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