April 4 -6, 2019

Register today!

Thursday, April 4: Registration Day

Friday, April 5- Saturday, April 6: Sessions from 8:00 AM to 5:30 PM.

 Saturday, April 6 at 6:00 pm: Dance Party!

Speak Up:
It’s Your Right!

Sarah Mueller, SiblingMarlene Cummings, Speech-Language Pathologist, and Augmentative/Alternative Communication ConsultantAnna Tansey, Special Educator
Empowering individuals to advocate for themselves may be one of the most important and powerful ways we can impact individuals as they pursue their life goals. Communication is the means by which we share our thoughts, ideas, and desires. Having access to and a means by which we communicate is of utmost importance when advocating for ourselves and others. Some would describe communication as a “human right,” others as the “essence of life.”. Knowing your rights, and being able to communicate them is vital as you effectively advocate for yourself or others and truly exhibit your freedom of expression. Join us as we explore rights, how to communicate them and what it will mean for you and those you influence.
Healthy Sexuality and Healthy Relationships for Individuals with Developmental Disability

Susan Kahan, University of Illinois at Chicago, Institute on Disability and Human Development
Everyone desires to love and to be loved. The myths and misconceptions about people with intellectual and developmental disability (IDD) often create barriers to healthy relationships. This webinar will explore the facts and myths around relationships and sexuality for people with IDD. We will discuss the importance of laying the foundation for healthy relationships early on through social skills and sexuality education. Resources and strategies for teaching healthy sexuality will be presented. In addition, we will discuss the role of healthy sexuality education as a primary prevention tool for sexual abuse, and other strategies to promote sexual abuse prevention.
Things You Want to Know – Using Group Homes for Dementia Care for Adults with Down Syndrome

Matthew P. Janicki, Ph.D., University of Illinois at Chicago Co-Chair, NTG

Kathy Service, RN, MS, FNP-BC 

This session will discuss some of the findings dealing with admissions, length of stay, staff allocations and care activities, costs, and the effects that dementia has on health, function and other life facets. In this session you will hear about one dementia group home care project, what happens over time with the residents, their expected longevity and changes in health and function, as well as how homes maybe specialized based on the stage of dementia and the needs of the residents. The information can be useful in planning for such homes and evaluating how they provide such specialized dementia care.
Planning for the Future

Jerry Hulick, Senior Planner, The Washington Group Special Care Planning Team Caring Consulting Group – Virginia Tech
For every life chapter, there is a financial backdrop, this workshop will explore some of those chapters and how to best prepare. This session will explore the financial needs of a person with Down syndrome across their adult life including transitioning issues (employment & residential), legal issues (Special Needs Trusts), and Government programs and benefits. This workshop will also explore ABLE accounts and other financial tools.
Aging Well Together

Seth M. Keller, MD,
Co-Chair, National Task Group on Intellectual Disabilities and Dementia Practices, Chair, Special Interest Group Adult IDD, American Academy of Neurology, Past President, American Academy of Developmental Medicine and Dentistry
Mark Peterson, Ph.D.,
FACSM, Associate Professor, University of Michiga
nBeth Marks, Ph.D., RN
Research Associate Professor, University of Illinois at Chicago
Sarah Lenz Lock, J.D.
Senior Vice President for Policy, AARP; Executive Director, Global Council on Brain Health
Getting older holds many promises as well as challenges and uncertainties. A great body of research has shown that caring for oneself throughout life does matter and can have an impact on the aging process. This panel will bring together national experts on wellness and health promotion as well as advocates who will discuss the current research and provide a practical approach that everyone should follow. Aging Well Together will also describe how a team approach is best to ensure that living well as one ages can lead to a positive and productive future. We are looking to get feedback from the participants in this open panel discussion, all ideas and thoughts are welcome and greatly appreciated.
Creating and Facilitating Peer Support for Families and Caregivers

Jadene Ransdell, Down syndrome & Alzheimer’s Family Advocate, Co-chair, NTG Lisa Ferretti, LMSW Research Assistant Professor and Director of Strategic Initiatives at Temple University School of Social Work in the College of Public HealthPhilip McCallion, Ph.D., Professor and Director, School of Social Work, Temple University
Are you, or do you know someone who loves and supports an adult with Down syndrome experiencing changes related to aging or Alzheimer’s Disease? If so, you may feel isolated, confused and filled with questions that seem to have no answers. Come learn about the Peer Support Project and how you can be involved or, gather information to take to your local Down Syndrome Affiliate. Help us support more families and adults with Down syndrome during an extremely difficult time in their lives.
Emergency Response

Mitchell Ross, Milwaukee PD

This presentation will enable attendees to recognize and identify potential safety issues and the proper actions to take to mitigate threats. The discussion will include information on Suspicious People and Packages.
The Benefits of Paid Family and Medical Leave for Family Caregivers


This session addresses the importance of paid family and medical leave for the families of persons with IDDs, with a special focus on the long-term results of such leave on the families as well as the overall healthcare system. The presenters will discuss how paid family and medical leave contributes to the development of a positive impact on the family’s mental, emotional and physical health, improved family well-being and financial security, reduced costs for private caregiving services, as well as reduced costs for the overall healthcare system.
Medications and People with Down syndrome

Steven Erickson,
Associate Professor of Social and Administrative Sciences, Clinical Pharmacy University of Michigan

People who have Down syndrome often take medication and supplements. Education of the person with Down syndrome, the people who provide assistance, the prescriber, and the pharmacist is required to ensure all members of the team are aware of the possible problems. Working together, the team can identify the potential and real problems that exist and develop strategies to minimize the risk of a medication-related event from occurring. This talk will review the medication use process and identify strategies that have been used and reported to help minimize poor medication-related outcomes.
Advanced Care Planning

Jane Boyle, 40+ years in non-profit strategic planning & Fundraising, Sister
The term “POLST” refers to Physician’s Orders for Life-Sustaining Treatment. The speakers will discuss the tools, such as POLST which are available for and how to utilize them to assure equal access to excellence in palliative care and end of life care for individuals with Down syndrome and their families. Jeanne R. Kerwin, DMH, CT, a recognized expert and practitioner in palliative care and bioethics, and Jane Boyle, the surviving sibling of woman with Down syndrome who died of the complications of late-stage Alzheimers Disease will present a professional and personal perspective on end of life planning and critical tools to ensure maximum quality of care and end of life.
Alzheimer’s vs. Pseudo-Dementia

David Smith, MD, Founder Down Syndrome Clinic of Wisconsin
It is common for the medical profession to assume that loss of ability or function in an adult with Down syndrome is due to dementia. That is not usually the case. This session looks at the workup that should be done to rule out pseudo-dementias, or conditions that can look like dementia. This session will also briefly talk about the shortcomings of the dementia questionnaires that some people use.
Creating a Vision Plan: An Essential Element of the Special Needs Planning Process

Phillip Clark, Founder & President of ENABLE Special Needs Planning
During this workshop-style session, you will learn why a vision plan is essential to your special needs plan. You will also see the process in which ENABLE guides families through every step of the comprehensive special needs planning process—starting with the Vision Plan—using their online, interactive tool. In this workshop, you will use this free tool to begin working on your own Vision Plan for your loved one. You will leave this session with a clearer idea of what a comprehensive special needs plan should entail and understand why it is ESSENTIAL to start the planning process by creating a vision plan.
Down Syndrome, Neurodiversity, and “Different Brains”

Dr. Harold “Hackie” Reitman, M.D. – Founder & President, Different Brains Inc.
Exercise, a healthy diet, socialization, mindfulness, skill development and self-advocacy are tools that help all brains, and those are just the tip of the iceberg. In this presentation, Different Brains founder Dr. Harold “Hackie” Reitman will look at the relationship, in adulthood, Down syndrome has with other intellectual and developmental differences, as well as neurological challenges, mental health issues and other general health concerns. He will also explore the common occurrence of Alzheimer’s disease and dementia in the adult Down syndrome population. Finally, Dr. Reitman will highlight the helpful tools and tips that transcend diagnosis, and help all of us regardless of label.
Understanding ABLE Accounts

Doug Jackson, Deputy Director, STABLE Account, Office of the Ohio Treasurer of State
Ohio’s STABLE Account is the most-used ABLE account in the nation. Come listen and talk with STABLE Account staff to…
1. Understand the value of ABLE accounts in saving/investing money without impacting public benefits like Medicaid and SSI
2. Understand how ABLE accounts work by utilizing STABLE Accounts as a national example
3. Gain updates on improvements that have occurred to ABLE accounts
4. Become equipped to enroll in an ABLE account and utilize its value to its maximum ability in your life
5. Leave prepared to talk about ABLE accounts in easy-to-understand language
An Overview of NIH-funded Research on Aging Issues and Alzheimer’s Disease in Down Syndrome and The INCLUDE Initiative

Sujata Bardhan, Scientific Program Manager, DS-Connect® Registry Coordinator, PregSource® Coordinator, (NICHD)
Conference participants will learn about progress in studies being supported by National Institutes of Health (NIH) for Alzheimer’s Disease in Down Syndrome. They will also learn about other studies supported by NIH, such as aging issues and health care transition. NIH staff will also discuss DS-Connect®: The Down Syndrome Registry and what it can offer families. Conference participants will learn about progress in studies being supported by DS-Connect®. Participants can also inform NIH and researchers about the issues that matter to them and share their research interests and priorities. An overview of the New NIH initiative called INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndrome (INCLUDE) will also be presented.
Why Setting Up a Special Needs Trust is Good Planning

Andrew Morris, MBA, CSA, Prudential Advisors


If you want to leave money or property to a loved one with a disability, you must plan carefully. Otherwise, you could jeopardize your loved one’s ability to receive SSI (Supplemental Security Income) and Medicaid benefits. By setting up a “special needs trust” in your will, you can avoid some of these problems. The trustee cannot give money directly to your loved one, that could interfere with eligibility for SSI and Medicaid. But the trustee can spend trust assets to buy a wide variety of goods and services for your loved one. Special needs trust funds are commonly used to pay for personal care attendants, vacations, home furnishings, out of pocket medical expenses, education, physical rehabilitation etc.
The Tale of Two Friends

Fionn Crombie AngusSelf-Advocate

Doug Fry, Self-Advocate

Fionn Crombie Angus & Doug Fry have a long-distance friendship. Fionn lives in Galway, Ireland and Doug lives in Jacksonville, Florida. They have known each other 5 years, and have met 6 times during that period. During this session, Fionn and Doug will talk about their friendship
Sibling Panel

Anita Raghavan, Ph.D., ParentTavrick Lawless, Self-advocateMaura Danehey, Sibling

Sarah Mueller, Sibling Rachel Mueller, Self-AdvocateBrenna Hoorn, Self-AdvocateMegan Makowski, Sibling
Siblings Panel will discuss the crucial role siblings play in the lives of their brothers or sisters with Down syndrome.
Social Etiquette Discussion for People with Down Syndrome

Rebecca Partridge, Director, Down Syndrome Program at Virginia Mason, Section Head, Primary Care Issaquah
This session will include lessons on safety and body autonomy as well as discussions on social etiquette.
Supporting People with Down syndrome and Dementia: Activities and Behavior Change

Kristi Davis, Dementia & Disabilities Supportive Services Program Coordinator, Alzheimer’s Association – Greater Michigan Chapter

Kate Pierce, Dementia and Disabilities Supportive Services Program Director Alzheimer’s Association – Greater Michigan Chapter
This program is designed to help attendees learn more about common behavior change in those with Developmental Disabilities and dementia, including the four common causes of distressing/disruptive behaviors. This program will also focus on planning activities for each stage of dementia, and using activities to help prevent and respond to common behavior changes. Involvement in structured and routine activities can decrease agitation, improve mood, and provide meaningful opportunities for engagement in life.
Housing Panel

Cameron Shomo, Self-Advocate

Douglas Rogers, Self-Advocate

Christopher Smith, Chalgian & Tripp Law Offices

Daniel Leonard, Self-Advocate, Student

Laurie Leonard, ParentDaniel Moloney, Self-AdvocateLaura Hathaway, President of Board of Directors and Employment Development Director at MI Work Matters
Housing and Independent Living Panel which will discuss moving out, housing plans and living independently.
Guardianship and Alternatives to Guardianship Panel

Catherine DaveyAttorney and Counselor at Law at Davey Law Group, P.A.

Leah OrtizExecutive Director of The Arc of Calhoun County, a Chapter of The Arc USAnne Tucker RobertsTeacher, Guardian, Author 
This panel will discuss and educate families on the options they have surrounding guardianship. This session seeks to illustrate the legal options available to individuals with developmental disabilities approaching the age of 18 in regards to choosing guardianship or guardian advocacy. There will be a review and explanation of both choices and then further explanation of what will generally occur in the courtroom.
An Introduction to Alzheimer’s Disease and Home Safety Modifications

Brandi Becker-Wright, MA, LLMSW, DDSSP  Program Coordinator Alzheimer’s Association –  Greater Michigan Chapter

Kate Pierce, LMSW, Dementia and Disabilities Supportive Services Program Director Alzheimer’s Association – Greater Michigan Chapter
Maximizing independence while maintaining safety is important at all stages of life. However, as people age and/or are diagnosed with dementia, what was once working may no longer be effective. Come join us to learn how to assess the environment and individual for safety, common safety issues by stage of dementia, and dementia and aging-friendly home modifications.
Promoting Health and Wellness for Adults with Down Syndrome Panel

Mary Borman, Self-Advocate

Sharon Milberger, Director, Michigan Developmental Disabilities Institute (MI-DDI) and MI-LEND, Wayne State University

This presentation will discuss holistic approaches to physical and emotional well-being for adults with Down syndrome. Physical health topics will include healthy weight, bone health and oral health. Emotional health topics will include anxiety and depression. Evidence-based wellness practices around healthy eating, physical activity and self-care will be described. Stress reduction techniques such as deep breathing and mindfulness will be demonstrated to allow participants an opportunity to practice self-care strategies.
Enchanted Objects for Everyday

Lili Dwight, Founder, Galactic Smarties
Have you ever thought to yourself, “I wish my bed knew when it was time for me to get up and would kick me out,” or “Why can’t my mirror tell me that I have a stain on the back of my shirt?” Whatever the wish, now’s the chance to dream it! We will break out into moderated small groups so that we can go deeper into the everyday objects we wish could do more. There will be markers and paper to sketch. Attendees who would like to share their creations with the large group will have time to do so at the end of the session and with permission, these ideas will later be on display in the exhibit hall.

What would you enchant?

Post-Secondary Education Panel

Jessie Green, Program Manager, Ohio State UniversityCathryn Weir, Director,  Think College National Coordinating Center
We want our attendees, a lot of whom will live in Michigan and the surrounding states, to have an understanding of the programs in their area. During this session, attendees will learn more about the post-secondary programs being offered for individuals with disabilities in the midwest.
Stand up for Downs – Improvaneers

Rob Snow, Motivational Speaker, Parent, Founder-Stand Up For Downs

The Improvaneers are the world’s first all Down syndrome improvisation troupe! They won’t be the last. In the last two years, Stand Up For Downs has taught improvisation to those with Down syndrome as a way to enhance communication skills like eye contact and voice projection, build self-confidence, teach the ability to think quickly and solve problems. In the last 6 months, they have upped the game by casting 9 individuals to dive deep into the improv arena to see how these skills will be applied to their daily lives. This ground-breaking and game-changing new program will cause social and workplace opportunities for those with DS to explode in the coming years. During the session, Rob will showcase what he’s learned so far, and how he will get this program ready and available for all people with DS to benefit from in the years ahead. You won’t want to miss this! (*session not recommended for those without a sense of humor!)
Self-Advocate Employment Panel

Austin Underwood, Owner of Austin’s Underdawgs

John and Mark Cronin, John’s Crazy Socks

Brandon Gruber, NDSS Board Member

Self-advocates continue to show the world that they are ready, willing and ABLE to work! Join self-advocates who have jobs or have their own companies to learn more about employment. The panelists will answer questions and give you advice.
ABLE Panel

Sarah Pennington, Senior Marketing Communications Associate, ABLEnow

Eric Ochmanek, Deputy Chief of Staff, Office of the State Treasurer of Ohio

Join this informative session to learn how you can set up an ABLE Account, how to make these accounts work for you and your family, benefit from this national program and discuss how Congress and advocacy organizations are seeking ways to improve the program at both a federal and state level.
Aging Matters: How can NDSS Affiliates Support Adults with Down Syndrome

Ariel Sansom, Director of Development & Programs at Down Syndrome Network Arizona (DSNetwork)

Louise Bowden, Executive Director of Down Syndrome Network Arizona (DSNetwork)

Rachel Reit,
 Marketing & Development Manager, Down  Syndrome Association of Wisconsin (DSAW)

“Down Syndrome Network provides ideas on how to develop a program tailored for aging individuals with Down syndrome. Aging really does matter and the quality of life for our aging population should be the BEST.

Aging Matters is a group for parents, caregivers, family members and individuals aging with Down syndrome. Aging Matters provides a time to network with each other, share knowledge and experiences, and support each other.”

#DSWORKS® Employment Panel: An Affiliate Perspective on Employment

Michelle (Shelly) Durbin, Executive Director of Waiver and compliance/supported employment
Down Syndrome of Louisville

Brianna Heitzman, Down syndrome of Louisville Career Solutions Specialist

Zac Sappenfield, Down syndrome of Louisville Career Solutions Specialist

Laura Hathaway, President of Board of Directors and Employment Development Director at MI Work Matters

As part of the #DSWORKS® program, NDSS focuses on creating opportunities for businesses of all shapes and sizes to discuss inclusive employment benefits and initiatives. The purpose of this panel discussion is to empower and equip self-advocates, parents and caregivers, affiliate organizations, employees and employers to show the world that people with Down syndrome are ready, willing and ABLE to work.
Co-Occurring Conditions Panel

Maria Dellapina, CEO /Founder Specs4us

*More Speakers Coming Soon

Co-Occurring Condition Panel which will discuss the health problems that are common within the Down syndrome community.
Making Employer Partnerships Work

Susan Adelman, UW LEND Parent/Professional Partnership DSC of Puget Sound

Devon Adelman, Lab Aid, Universal Cells

Debbie Moore, Rotary Partners for Work Coordinator, WISE

Richard Wilson, King County School to Work Program Manager 

Shelley Dillion, Supervisor of Human Resources,  Universal Cells 

King County leads Washington State in successful supported employment, largely because of a great partnership. Creating warm handoffs for students and families leaving the K-12 school system and entering the adult employment programs, King Counties School to Work Program has been very successful. Finding employers where they are, Partners for Work engages Rotarians to identify new job opportunities.
Law Syndrome

NDSS Advocacy & Public Policy Team

Law Syndrome affects 100% of people with Down syndrome. It is a series of antiquated laws that impede the pursuit of a career or living independently without risking Medicaid benefits. The NDSS team will discuss the progress that we are making with Law Syndrome and how you can advocate for your own rights. Despite these victories, Law Syndrome continues to limit our community to the poverty line. This is not acceptable. We must continue fighting for financial independence and making ABLE accounts more accessible to a wider population of the disability community. To do this, we need your help.
Grief and its Complications in Individuals with Intellectual Disabilities.

Kermin Munir, MD, MPH, DSc Boston Children’s Hospital, Harvard Medical School Developmental Medicine Center

Bereavement and loss have a significant impact on the lives of individuals with intellectual disability (ID). Although there is a growing impetus to define the symptoms of grief that predict long-term functional impairment, little is known about maladaptive grieving among individuals with ID. Dr. Munir, a leading specialist, will discuss grief and it’s complications.
Estate Planning for you and your Family

Michael Toobin, Esq.

Families with a member who has special needs face a myriad of unique legal matters.

These include estate planning issues and guardianship. This workshop will discuss the following topics:

-the need to plan: it must be in writing
-basic estate planning: what documents everyone must have;
special needs estate planning including the various special needs trusts: there are more than just one
-guardianship, conservatorship and alternatives to these legal proceedings: protecting our young adults


Changing the Playing Field

Karen Gaffney, Self-Advocate

Karen Gaffney, an outstanding, successful role model, will challenge adults with Down syndrome to get on your feet, set your sights high and reach for the stars to show the world that Down syndrome IS a LIFE WORTH LIVING!!!
Learn to Tell Your Story/Job Interview Prep

Devon Adelman, Seattle University Buddy Coordinator

Molly McCabe, President of Seattle University Best Buddies

Adrian Forsythe, Self-Advocate

This Job and Interview Preparation Panel will help prepare self-advocates for jobs and interviews by developing their public speaking skills. This workshop will help others develop the skills they need to professionally share their life stories, network and advocate. It will also focus on using public speaking skills in job preparation.
DS-CTN, How Clinical Trial Networks Speed up the Availability of Treatment Options for People with Down Syndrome

James Hendrix, Chief  Scientific Officer, LuMind RDS Foundation

With a global population of greater than 5.3 million people, Down syndrome (DS) represents a large population with many unmet medical needs. LuMind is responding to this need with the establishment of the Down Syndrome-Clinical Trials Network (DS-CTN) to facilitate more clinical research in the DS population. In this session, the clinical trials process will be explained and a description of the first study in the DS-CTN, the Longitudinal Investigation For Enhancing Down Syndrome Research (LIFE-DSR) study. It is estimated that by age 55–60 years at least 70% of people with DS will develop Alzheimer’s dementia. An important question is whether it is possible to prevent or mitigate cognitive deficits associated with AD. The LIFE-DSR study will observe people as they age to set the stage for future treatment trials in Alzheimer’s.

You have a special needs trust – now what?

Rob Wrubel, CFP® AIF® AEP®

Families often start legal and financial planning in a state of fear and anxiety. They are overwhelmed with the decisions they need to make about their financial lives and future planning. They need to do something and so they get a special-needs trust in place. But what happens next? How does that trust help a family create the most fulfilling life for their loved one with Down syndrome?

The special-needs trust is a crucial planning element and the one that starts families on the journey of preserving government benefits, saving for retirement, and building a financial legacy to care for each member of the family. Many families have taken action to have a trust in place but they do not always understand what to do with that trust, how to best use it, and what steps to take next. This workshop guides participants through the pitfalls and best practices families have encountered in the months and years after putting a trust in place.

**Please note that this schedule is subject to change.