March 21, 22 & 23
Online conference – no travel involved
Living, Learning & Leading for a Global Impact on the Down Syndrome community.
Sessions on Adult Issues
We here on The Road are super excited because this conference has a diverse line-up of sessions geared toward parents and caregivers of adults who have Down syndrome! So far, we have 14 different sessions that focus on adult issues, including a keynote address from Patti Saylor on the progress that has been made by #JusticeForEthan.
This is just the beginning of a new source of information that will address our needs through virtual education with 321eLearning. If you have ideas for sessions you would like to see – even after the conference – feel free to email me!
Current Line-up
Parents and caregivers of adults who have Down syndrome discuss current issues: job placement, storytelling as advocacy, research for real life, and planning with siblings. Join members of The Road We’ve Shared as they lead a parent-to-parent discussion on these topics. Bring your questions, and share your thoughts with us.
Justice For Ethan – The Movie – Edward Rhodes
Director Edward Rhodes will be discussing the focus of his film Justice For Ethan and the process and goals he hopes to achieve be producing this documentary. Justice For Ethan is a feature documentary about Ethan Saylor and his mother Patti Saylor’s journey of advocacy in response to her son’s untimely death in January of 2013 at the hands of Frederick County Maryland Sheriff Deputies. Participants will have the opportunity to ask questions and interact with Edward after the “Director’s Cut Premiere” at Hood College on March 20th 2015.
Justice for Ethan; Working with Law Enforcement – Patti Saylor
Patti will give and update on the advocacy efforts and accomplishments since Ethan’s death. The work of The Commission for Effective Community Inclusion of People with Intellectual and Developmental Disabilities, formed by executive order by Governor O’Malley following Ethan’s death. Introduction of the work of The National Center for Criminal Justice and Disability, a program of the Arc US. Discussion of resources available to parents, service providers and Law Enforcement Agencies.
To Be or Not To Be Guardian? The Joys and Realities of Adult Guardianship – Marianne Marts
How to be sibling co-guardian/guardian of an adult sibling? We will answer that difficult question of what does adult guardianship look like. We will give you tools and tricks of how to be an actively involved guardian and still have a life. Helping you to find balance between maintaining control of services but not your sibling. Laced with personal stories of our family journey.
Dementia in Aging Adults with Down Syndrome – Cristy Phillips
Participants will learn about the transition between Down syndrome and Alzheimers-like dementia in aging adults with DS. Basic, clinical, and translational aspects of the relationship between DS and AD will be explained. Finally, the speakers will highlight work by internationally renowned scientists in this field, work that will be released in an upcoming book that they are editing.
Guardianship & Alternatives – Jane Larrabee
At age 18, children become legal adults. What if your child does not have the capacity to handle this role? What can you do if your child needs you to continue to make education, finance and medical decisions for him? We will cover: What is a Guardianship? Who is it for? What does it do? What is the legal process? What are possible alternatives?
My Possibilities – Michael Thomas
Many individuals with disabilities attend Day Centers. My Possibilities takes that concept to a whole new level by examining continuing education paths as a vehicle for improving the opportunities of young adults with Down syndrome and other disabilities. Interaction and education that is meaningful and skillfully delivered make this rapidly growing program a success.
Customized Employment – Mary Pearson
Customized employment has been a recognized process in utilizing creative means for obtaining individual employment for those with significant disabilities for years (Griffin Hammis LLC, 2014). But many secondary educators who work with students with these disabilities may be unknowledgeable about the process. This presentation will summarize the findings of a multi-analysis of research articles about customized-employment and educators, and a mixed method feasibility study where customized employment processes were conducted for a group of young adults with severe disabilities. The results will review results related to the feasibility of the customized process for educators.
Parents As Dream Keepers – Charmaine Thaner
Parents have many important roles, and being the keeper of dreams for their child is an essential one. Workshop participants will learn the importance of personal reflection, how to give dreams a voice, and strategies to expand the opportunities for all children and young adults.
Calm to Crisis at the Flip of a Switch! – Marianne Marts
We as siblings will be in the lives of our family members with Down syndrome longer than anyone. We will be there after our parents are gone and special education services are a distant memory. If we are provided with support and information, we can help our sibs live a higher quality and productive life. We will teach you the necessary resources to help plan for success rather than crises not “if” an emergency happens but when it does. We will give you tips on how to bring up the conversation, teach you and your family on how to prepare for when an emergency does arise (i.e. routines, likes/dislikes, communication, transportation, caregivers, case managers etc.) and you will walk away with a planning page that you can put into place immediately.
Bringing Your Journey Through an Eight Step Special Needs Planning Process – Mary Anne Ehlert
Protected Tomorrows, Inc. enhances the lives of people with developmental disabilities through a comprehensive life planning process. Its nationwide network of Advocates creates Future Care Plans, which include the educational, residential, financial, legal, health care, government benefits, employment and recreational needs of the individual with special needs. The Protected Tomorrows passionate team of professionals has a personal connection to the special needs community, so they understand the concerns of families first hand. It drives them to continuously identify, design and implement solutions to life planning, bringing peace of mind to families about the years ahead for their loved one. Mary Anne Ehlert will provide a passionate glimpse of her life with Marcia, her sister who has a disability, as an example of how they can assist families in developing their own personal future care plan. The presentation will be uplifting and entertaining, as well as provide a good basic understanding of some important facts. Included in the topics of discussion are: How to create a map of the future; how to prepare legally and financially; how to incorporate and maximize government benefits; how to prepare for transition; and how to communicate a Future Care Plan TM to the family of the individual with disabilities.
A Place to Call Home – Stephanie Thompson
In this session, we will have an open forum to discuss our present residential situation for our children who have Down syndrome who are more involved. We will talk about where our children are presently, and share residential options for the future.
After High School…Post-secondary Studies – Susan Holcombe
Exciting information about universities offering post-secondary studies for students with intellectual disabilities.
Getting Past the Benefit Myths: The Truth About Working – Marianne Marts
Learn how to understand the connections between work and benefits. The attitude is that the disability experience is unique for each individual, and that benefit programs can affect that experience in different ways at different times. With planning, people with disabilities can take control of finding the programs and jobs that meet their needs. Find out the difference between SSI and SSDI and that they can work and NOT lose their benefits. Hear and learn about success stories, benefit safety tips & management, work tips and toolboxes, job supports & accommodations and rights and responsibilities.
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