Keynote Address: Janice and Rich Fialka, May 12, 9:15 – 10:15 am
Living, Loving and Learning with my Child with a Disability
From almost 40 years of “learning” from my adult-son, Micah, we will share stories about the principles that guide us in our parenting, including high expectations, intentionally asking for help, holding tight to dreams, and transforming the community. We’ll explore how we dance between our role as protector to guide, how we recover from missteps and how we honor Micah’s voice and his dreams. Our commitment is to offer real-world examples, honest reflections, and always humor.
Background: Janice Fialka is a nationally recognized lecturer, author, and advocate on issues related to disability, parent-professional partnerships, inclusion, raising a child with disabilities, sibling issues, and post-secondary education. She is also a parent, poet, a compelling storyteller, and an award-winning advocate for families and persons with disabilities. Janice has established herself as a major contributor to the national conversation about parent-professional partnerships through her highly regarded writings, keynote, and workshops titled, The Dance of Partnership: Why do my feet hurt? She reflects with sensitivity, humor, and compassion on the challenges facing parents and professionals as they seek to build successful working relationships on behalf of children with disabilities.
WORKSHOPS
*Click to view Listing of all workshop sessions available to virtual attendees
Session A – Thursday, May 12, 10:45 – 12:00
A1: Medicaid and Long-Term Support Programs – SESSION CANCELED
Available on Zoom for Virtual Attendees
Are you confused about what your child’s Medicaid card might cover? Do you want to learn more about WI’s children’s long-term support programs? This session will answer many of the questions families have and will demystify Wisconsin Medicaid and Medicaid Waivers.
A2: Supported Decision-Making: Youth and Parent Perspectives and Tools – Beth Swedeen
Available on Zoom for Virtual Attendees
This session explains Supported Decision-Making and alternatives to guardianship and will provide insights from a youth’s perspective about why making their own decisions is important to their self-esteem. A parent who is using Supported Decision-Making will share practical ways to implement it with her children long before they turn 18.
A3: COVID-19 and What it Means for Students with IEPs – Sharon Madsen
Department of Public Instruction (DPI) presenters will discuss the latest updates on COVID-19 and what it means for students with IEPs. DPI developed a COVID-19 Special Education Question and Answer document (March 18, 2020) to respond to questions they received on special education requirements related to the public health emergency. Guidance from the US Department of Education, Office of Special Education Programs will be discussed.
A4: From guilt and grief to love and acceptance: A doctor-mother’s shifting perspective – Jane Lee
As a physician, Jane Lee frequently cared for children with serious conditions and disabilities. When her second child sustained a severe brain injury at birth, she found that her experience as a physician was no help as a parent. Using excerpts from her memoir, Catastrophic Rupture: A Memoir of Healing, Jane will share with the audience her initial struggle to accept, bond with, and love her daughter, her pervasive feelings of guilt and grief, and her eventual arrival at a place where she could see the beauty and value in the person that is her child. Discussion will follow.
A5: Technology First- Strategies for Increased Independence and Stronger Social Connections Members of the Technology First Coalition
Technology experts will provide an overview of the Technology First Coalition’s Guiding Principles and share examples of how technology enhances the independence and social connections of individuals with disabilities and the impact this has on their families, providers, funders, and program administrators. Presenters will share engaging stories, graphics, videos, and hands-on demonstrations of how technology can enhance daily life.
A6: Know Your Rights – Sally Flaschberger – SESSION HAS BEEN CANCELED
The Living Well project trains youth, caregivers, families, and professionals to use the “Let’s Talk about Rights Toolkit” on rights for people with disabilities. Self-advocate leaders will share their experiences learning about their rights and how they can assert their rights. Participants will have the opportunity to think about and plan how they can help their child or young adult learn how to assert these rights.
Session B – Thursday, May 12, 1:30 – 2:45
B7: Living a Self-Directed Life with a Special Needs Trust – Vicky Gunderson and James Giese
Available on Zoom for Virtual Attendees
This session will explain what self-direction means to a person with a disability. Self-direction is the ability to live the life of your choosing. A Special Needs Trust is one avenue to living a self-directed lifestyle.
B8: Special Education and Working with Schools – Christine Shafer
Available on Zoom for Virtual Attendees
This presentation will provide information for families on special education, Individual Education Plans (IEPs), laws that protect students with disabilities, and the disciplinary process for students with disabilities.
B9: What Do I Tell My Very Young Sibling Child? – Harriet Redman
Parents who hear the diagnosis of a disability for their child often wonder how it will impact the other children (their siblings), especially those ages 3-5. What do you tell a young child? When? What strategies help in parenting both a child with disabilities and their ‘typical’ siblings? This workshop will address the concerns of parents of very young children and provide them insights into the sibling’s roles, emotions, needs, and behaviors. Each family attending will get a Sibsack designed to help parents communicate and develop strategies to enhance relationships within their family.
B10: A Conversation for Fathers and Other Male Caregivers – Rich Fialka
This workshop will be a welcoming opportunity for a conversation with fathers and male caregivers about our experiences, fears, and dreams.
B11: My Child Doesn’t Qualify for Early Intervention! Now What?! – Heidi Lehman and Rose Cutting
This presentation will focus on the next steps a family can take if their child doesn’t qualify for early intervention services such as Birth to 3 or Early Childhood Special Education. This will be a fun, interactive session filled with compassion, support, and coaching for families. Families will recognize and understand their procedural safeguards, how to locate statewide and regional supports and services, and how to build their social capital.
B12: Growing into Your Community: Transition to Adulthood – Virginia Harrison
Wondering how to build a full life after high school? Join us to explore what opportunities for community engagement are possible after high school with exploratory, strengths-based activities and group sharing. You will leave the session feeling empowered to pursue community connections.
Session C – Thursday, May 12, 3:15 – 4:30
C13: Birth to 3 Program: A Good Start in the First 1,000 Days – Kate Johnson
Available on Zoom for Virtual Attendees
The Wisconsin Department of Health Services (DHS) wants every parent or caregiver of a child with a delay or disability to be aware of the Birth to 3 Program, understand the benefits of early intervention, and know how to access the program. DHS launched the First 1,000 Days Wisconsin Child Find Campaign in spring 2021, alongside a media toolkit so that counties, providers, partners, and other stakeholders can help spread awareness. Come to this session to learn about the program, outreach materials, and how you can help.
C14: How to Hire, Train, and Retain Respite Workers and Do Background Checks – Val Madsen
Available on Zoom for Virtual Attendees
Caregivers in Wisconsin are often responsible for finding their own respite providers and don’t know where to start. In this interactive session, learn about places to look for a respite worker, the interview process, and the available training, along with tips to keep workers longer.
C15: Reclaiming Your Relationship Connection – Robin Schnitzler
Do you wish you felt closer to your partner? Are you arguing with your partner about little things? Is it hard to talk about important things? These are all understandable, as it is often extra challenging to stay emotionally and physically connected with our partner when caring for a child with a disability. In this workshop, drawing on Gottman principles and the work of Sue Johnson, we explore ways to re/connect with your partner, feel more supported, and feel like more of a team.
C16: Dreaming Differently: Planning the Transition to Adult Health Care (90-minute session) – Beth Guthrie-Moss
This session will provide an overview of the transition from pediatric to adult health care, tailored to families who have children with complex medical conditions and who may have intellectual and/or developmental disabilities. We will explain the five tools to a successful transition.
C17: IEP Resume: How to Create a Foundation of 2-Way Communication Using This Simple Tool – Abigail Davidson
A good line of communication between families and IEP team members is crucial, but not always easy to achieve. Creating an in-depth “all about me” document for families to share with their team can help to express their dreams, concerns, and desires for their child. It also can help team members to have a better understanding of families’ expectations and establish a good relationship for the long term.
C18: Learning to Make Choices Early: Setting the Stage for Future Decision Making – Barbara Katz and Patricia Layde
This session will give families practical ideas about how to help their child build choice-making skills. Learning how to make your own choices as a child prepares you to make important decisions as an adult.
Session D – Friday, May 13, 9:00 – 10:15
D19: Children and Youth with Special Health Care Needs (CYSHCN) Network – Becky Burns
Available on Zoom for Virtual Attendees
Come learn what the CYSHCN Network can provide to you as a parent or as a professional in the field. The Network is here to support families who are raising children with special health care needs or disabilities. You will learn about the information, referrals, and robust training opportunities for families and the providers who support them.
D20: Self Care: A Panel of Parents/Family Members
Available on Zoom for Virtual Attendees
Presentation Slide (Iceberg Image)
Six parents/family members who have children with disabilities will share their perspectives, experiences, and insights for self-care. This engaging panel discussion will be moderated by marriage and family therapist, Robin Schnitzler, who is also a parent of a child with special needs.
D21: The Medicaid Purchase Plan (MAPP) and DVR Process and Pre-Employment Transition Services – Megan Koch, Kim Rasmussen and Kassey Anderson
Part 1: The Wisconsin Medicaid Purchase Plan (MAPP) program has changed! MAPP provides Medicaid to many working individuals in Wisconsin. Come learn all about MAPP – from eligibility to options for saving more of your earnings.
Part 2: Come learn about getting connected with the Division of Vocational Rehabilitation (DVR) and the eligibility process, types and goals of DVR transition services, key practices, and helpful tools for collaboration.
D22: How to Take Care of our Thoughts and Emotions to Preserve our Mental Health – Como Cuidar de Nuestros Pensamientos y Emociones para Conservar Nuestra Salud Mental – Elsa Diaz-Bautista
**Esta sesión será presentada en español / This session will be presented in Spanish**
Did you know that how you think directly impacts how you feel? Do you often feel that your thoughts, emotions, and actions are beyond your control? In this session, we will explore effective tools and techniques to understand and change our thoughts, feelings, and actions. This process builds a foundation to help manage thoughts, emotions, and actions, instead of letting these get in the way of our full potential.
Session E – Friday, May 13, 10:30 – 11:45
E23: What is Sibling Support – Lindsey Kirschbaum
Available on Zoom for Virtual Attendees
Children who have a sibling with a disability face unique challenges not encountered by children who have siblings who are typically developing. This session will give an overview of the needs of children who have siblings with disabilities, supports that are/are not out there, the benefits of providing recreational therapy services to siblings, interventions and outcomes that can be used and much more.
E24: Children’s Long-Term Support (CLTS) Waiver Renewal: What it Means to Families – Mary Schmierer
Available on Zoom for Virtual Attendees
The Children’s Long-Term Support (CLTS) Program is renewed by the federal government every five years – the most recent was January 1, 2022. Each time the program is renewed, the Wisconsin Department of Health Services (DHS) looks for ways to improve services and supports for children and families. Come to this session to hear about improvements to the program, updated services, and how it can benefit you.
E25: Requesting a Shared Plan of Care and Care Mapping – Allison Lourash
Learn more about the benefits of a Shared Plan of Care, which is a summary of your child’s medical and non-medical information as well as your family’s strengths and goals. Then we will have a hands-on opportunity to create a care map. Care Maps can communicate both the big picture and the small details of all of the resources needed to support your child and family.
E26: Skills for Serving on Groups that Make Decisions and the Role of Families – Lori Karcher
Do you want to be more involved in a decision-making group but are not sure where to begin? Are you tired of feeling like the token representative instead of an active member of a decision-making group? This workshop will introduce you to a resource to help you navigate decision-making groups, give information about the roles of families in these groups, and offer practical tips and strategies for putting your decision-making skills into practice.
E27: Bridging the Gap: From Child to Adult Health Systems – Dawn Stark
Transitioning to adult programs, services, and medical care can be confusing. This presentation will show families how to take an active role in the transition process, learn about Supported Decision-Making and alternatives to guardianship, and learn about SSI, insurance, long-term support options, and other topics.
E28: Health Care Services in the Latino Community (CSHE Grant) – Hector Portillo and Claudia Bustillo Rivas
Caring for children with special health care needs (CSHCN) without the proper support and resources can increase stress and result in negative child and family health and mental health outcomes. Latino families of CSHCN often face additional systemic, cultural, and linguistic barriers that limit their ability to access supportive services and resources. Culturally and linguistically appropriate solutions are needed to help reduce health disparities in this at-risk population.