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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
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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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Financial Planning for Youth with Disabilities
May 2024
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 financial planning including public benefits, long-term care needs, legal tools and health care.
Financial planning is a key part of transition for every youth, even if your family has limited income or assets. It does not all have to be done at once, and the plan may change over time. But, starting this process allows your family to feel secure about your adult child’s financial future.
Planning for Public Benefits
Public programs, like Medicaid and Supplemental Security Income (SSI) are widely used to cover the costs of care for children and adults with disabilities. These programs, including the Children’s Long-Term Support Program (CLTS) and adult long-term care programs like Family Care or IRIS require that the person is Medicaid-eligible. These programs are also “means-tested” so the person must have limited income and assets.
Who Can Help?
Most counties have Disability Benefit Specialists at their Aging and Disability Resource Center (ADRC) who answer questions and assist with public benefit applications and appeals.
Tip for Families
Letter of Intent: A Tool to Let Others Know your Wishes After You Are Gone
Financial planners recommend that families write a letter of intent. It’s not a legal document—It is a practical way to communicate with the people in your child’s life like caregivers, guardians, siblings and trustees. You can include your child’s likes, dislikes, their abilities and interests. Most importantly, write your wishes and desires for them after you pass away. It’s also suggested to add a reminder to your calendar to review this letter regularly. Learn More Guide to Writing a Letter of Intent
Employment and Eligibility for Public Programs
Work Incentives Benefits Specialists advise your family and your youth who has a job or wants to work in the future how they can earn money and keep needed benefits. There are ways for families to get work incentives benefits counseling through the program that your youth is enrolled in:
- Division of Vocational Rehabilitation (DVR), the service can be added to the Individual Plan for Employment (IPE).
- Children’s Long-Term Support, Family Care or IRIS, the service can be added to the Long-Term Care service plan.
- DVR and Long-Term Care are not an option, the Work Incentives Planning and Assistance (WIPA) program provides services at no-cost to people who have a job or are looking for work.
Learn More: Benefits and Work Training: training.eri-wi.org/widhs-cie
Before Age 18 – Benefits and Working: beforeage18.org/benefits-and-working
Financial Tools to Keep Eligibility
Special Needs Trusts (SNTs) and Achieving a Better Life Experience (ABLE) accounts are tools used to maintain a person’s eligibility for public programs if a Medicaid or SSI recipient has income over the allowable level, assets over $2,000, or is expected to receive money through an inheritance.
Achieving a Better Life Experience (ABLE)
- ABLE accounts are special savings accounts that give people with disabilities and their families a way to save for future expenses without affecting their eligibility for SSI, Medicaid or other means-tested programs.
- Family and friends can deposit up to $18,000 per year, adjusted annually. A total of $100,000 can be deposited before SSI benefits are impacted. ABLE account funds can only be used for qualifying expenses like a person’s living, working, transportation, direct support, healthcare, or other needs.
- Wisconsin does not currently have its own ABLE Program, however, recent legislation may establish one. Until that time, ABLE programs in other states that allow consumers from out-of-state to open accounts are an alternative for Wisconsin residents. See the Family Voices ABLE Account fact sheet and ABLE National Resource Center (ablenrc.org)
Special Needs Trusts (SNTs)
SNTs can be created for a youth or adult with disabilities. Assets in the trust are not counted toward Medicaid or other means-tested programs. Families can set up individual SNTs by working with attorneys or financial planners who specialize in creating first-party or third-party trusts.
- First party trusts are funded with the assets of the person with disabilities. For example, funds from a settlement from an injury, lawsuit or inherited funds. These trusts have a “Medicaid Payback provision,” meaning that when the person passes away, the state Medicaid program can be reimbursed for expenses they covered during that person’s life.
- Third-party or community trusts are funded with assets owned by people other than the person with disabilities, such as a parent or a grandparent, and do not have a Medicaid Payback provision.
- Pooled Trusts are another option for families. A nonprofit organization that administers trusts on behalf of many participants combines or “pools” the assets of many beneficiaries for investment purposes. Management and setup fees are usually less expensive than individually organized trusts. Wisconsin has two options for setting up pooled SNTs, Wispact(wispact.org) and Life Navigators (lifenavigators.org/trust-program).
Learn More: Special Needs Alliance: Special Needs Trust
Wispact: What is a Trust?
Planning for Long-Term Care Needs
Your financial planning needs to include the direct care needs of your youth now and in the future. Learn about public programs like Family Care or IRIS that can pay for the direct care and support needs of adults with disabilities. To qualify for Family Care or IRIS, the person must be covered by Medicaid. Supplemental Security Income (SSI) is a common way for a person with disabilities to gain Medicaid coverage.
Learn More: Family Care: dhs.wisconsin.gov/familycare/index.htm
IRIS: dhs.wisconsin.gov/iris/index.htm
Plan to Support Decision-Making
Your youth’s financial plans should also include thought about their ability to manage their own finances and make financial decisions, like signing contracts. For a young adult who may need limited support to pay bills, manage a bank account, or debit or credit cards a Supported Decision-Making Agreement or Power of Attorney for Finances may be good tools to consider. Families may choose to petition for Guardianship for a person who is not able to make informed decisions. This is the most restrictive tool for your youth and your family must think carefully about its benefits.
Learn more: Family Voices of Wisconsin: Supported Decision-Making Fact Sheet
WI-Board for People with Developmental Disabilities: Supported Decision-Making Toolkit
Health Care and Medical Planning
Finding and keeping healthcare coverage may not be top-of-mind for financial planning. However, at age 18 a person may qualify for new health plans and different coverage options. Current federal law allows parents to keep their youth on their private/employer plan until age 26, and some may be able to keep a child beyond age 26 if their insurance plan has a “disabled adult dependent” policy. More information can be found at Questions Parents Are Asking about the Age 26 Mandate and Disabled Adult Dependents.
Who Can Help?
Health coverage navigators at Covering Wisconsin offer free assistance to find the best insurance plan for you and your family members.
Health coverage options may include:
- Medicaid: A young adult may qualify for Medicaid. If they qualify for Supplemental Security Income (SSI), they will be enrolled in Wisconsin Medicaid.
- Medicaid Purchase Plan (MAPP): For youth who are working or want to work, the Medicaid Purchase Plan (MAPP) is another way to access Medicaid coverage. See MAPP Consumer Guide.
- HealthCare.gov: Affordable health plans are available for those who may not qualify for Medicaid, with many policy options and networks to choose from. The open enrollment period typically runs from November 1 – January 15 each year.
Do I Need to Work with a Professional?
Some families find that meeting with a financial advisor and/or an attorney can be very helpful. If you feel you need the help of a professional, we recommend finding one who has experience and is knowledgeable about special needs planning. Some professionals may offer reduced fee consultations or assist your family in a limited way if cost is a barrier.
Learn More: Academy of Special Needs Planners
Special Needs Alliance: Special Needs Attorneys in Wisconsin – SNA (specialneedsalliance.org)
**Note: Many of the tools and resources included in this fact sheet do not require a professional and can be completed on your own.
INFORMATION AND RESOURCES
Family Voices of Wisconsin, 2024© | familyvoiceswi.org
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