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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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Healthcare Transition Planning
December 2023
Integrated transition planning for youth with disabilities creates a path to living a full, meaningful, and connected life as a community member. It means planning for what will change as your child becomes an adult. We know that every child is different, so every idea might not be right for your family. This fact sheet focuses on planning for transition from pediatric (child-centered) to adult healthcare systems.
Start the Process Early
Families can prepare youth for healthcare transition. This can start as early as age ten or when they are developmentally ready. One example is to talk about daily medications. Explain what each medication does, what each looks like, and when it’s taken. Visual schedules and other tools can be used. At doctor visits, encourage and coach your youth to speak directly with medical providers, ask questions or explain concerns. You may need to ask or model for the provider how to speak directly to your youth.
During a youth’s teen years, continue to encourage them to take more responsibility for their health care, such as checking in at clinic visits, carrying a list of emergency contacts or entering them into their phone contacts, refilling prescriptions, and preparing questions before appointments. If providers send you electronic reminders, ask that they are also sent to your teen’s phone.
A great way to start preparing your youth for transition is to encourage them to speak alone with their medical providers. Before a visit, write down or record in their communication device a few questions they can ask their doctor. For more information, Got Transition® provides a list of differences between the pediatric and adult healthcare systems and transition tips.
gottransition.org/resource/?pediatric-vs-adult-care-differences
Self-Advocacy is Key
As with other parts of a youth’s transition to adulthood, learning to advocate for themselves around their health and medical needs is essential. Identifying with, and explaining their diagnoses are important steps toward independence. When a child is old enough to understand their diagnosis, parents can help them choose if they want to disclose their personal information at school, at a job or to others in the community.
Right to Privacy
Parents are surprised to find age when their child’s rights to privacy change. In most systems, at age 12, children have the right to speak to their doctor alone about their health care, including reproductive and sexual health topics. Prepare yourself by asking the medical provider how they handle this change for their patients and talk with your child before their visit.
Important
Be sure to check that any new medical providers accept your insurance and/or Wisconsin Medicaid. Also, check with your pharmacy and medical supply or adaptive equipment companies to learn about coverage changes that may occur at age 18.
When Will my Youth Transition to Adult Healthcare Providers?
If the healthcare providers are pediatricians or pediatric specialists, the youth will need to move to adult providers at the age of 18, 21 or 26 depending on the clinic or health system’s guidelines. If the youth sees a family medicine doctor, there will be changes in consent and privacy. Talk with your child’s primary care provider about the steps to take toward transition and ask for recommendations for adult providers who have experience with the youth’s condition or diagnosis.
Contact Covering Wisconsin, 877.942.6837 or coveringwi.org to find affordable health coverage for young adults. And, read our Health Coverage Options for Young Adults fact sheet for more resources.
Differences between Pediatric and Adult Healthcare Offices
Parents tell us that the move from having their child at a children’s hospital to a general hospital can be startling. Wisconsin’s children’s hospitals are family-focused and offer coordinated care if multiple medical specialists are needed. While it is not universal, starting at age 18, youth will be admitted to a hospital facility or unit that cares for adults. Related to consent rights, providing family input, staying overnight in your adult child’s room, and/or coordinating their care, may take more assertive parental advocacy and self-advocacy by the young adult.
Differences that Families Notice
One big difference is the environment of the adult provider’s waiting area and office. The colorful waiting rooms decorated with child-friendly pictures are gone. While most adult healthcare providers try to be warm and welcoming, children’s providers tend to emphasize this more.
Finding New Adult Healthcare Providers
When looking for a new doctor, think about the location, the accessibility of the clinic and exam rooms, the provider’s familiarity with your young adult’s medical condition, and whether the provider can coordinate care with other specialists. Even if your young adult stays with their current doctor after age 18, be aware that if they are admitted to the hospital, they will be placed in a hospital for adults rather than a children’s hospital. For more information, see The Pacer Center’s Transition to Adult Health Care.
Legal Considerations
Starting at age 18, or as young as age 12, federal law requires parents get written consent from their young adult (the patient) to keep access to their medical records and communications with their medical providers. This includes electronic access, like MyChart or similar platforms. The youth needs to sign a Release of Information form to continue your access to their records. Talk with your clinic or health system to find out what they require.
In the case of mental health care, state law allows minors to maintain privacy from their parents as young as age 14. Learn more about these changes at Transition for Youth with Mental Health Needs.
Families need to discuss whether guardianship, or other less restrictive options, like Supported Decision-Making Agreements, need to be activated to support a youth’s healthcare decisions. To learn more about these and other legal tools see the Supported Decision-Making Toolkit and our Supported Decision-Making fact sheet.
INFORMATION AND RESOURCES
- Health Transition Wisconsin has learning sessions, including Build Your Bridge and Dreaming Differently, videos and transition planning tools. healthtransitionwi.org/families-youth.
- Wisconsin’s Children’s Resource Centers offers one-on-one support and referrals, training. and resources dhs.wisconsin.gov/wiscway/index.htm.
- Got Transition includes online tools and information gottransition.org/parents-caregivers.
- Pacer Center has online resources and other learning opportunities pacer.org/transition/learning-center/health/transition-to-adult-health-care.asp.
Family Voices of Wisconsin, 2023© | familyvoiceswi.org
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