April 4 -6, 2019

Register today!

Thursday, April 4: Registration, #DSWORKS® Marketplace Exhibitor Hall from 1:00- 5:00 pm

Thursday, April 4: Screening of Intelligent Lives”  A film by Dan Habib from 6:00-8:00 pm

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

 Saturday, April 6: 7:00-9:00 pm Dance Party!


Thursday, April 4, 2019

1:00 pm to 5:00 pm
Registration, #DSWORKS® Marketplace Exhibitor Hall Pick up Down Syndrome Adult Summit information at the Detroit Marriot Renaissance so you can plan which sessions you want to attend.

Friday, April 5, 2019

7:00 am – 5:00 pm Registration, #DSWORKS® Marketplace Exhibitor Hall
7:00 am to 8:00 am Continental Breakfast 
8:00 am – 9:00 am                                                                                  Opening Plenary
Welcome and Opening Plenary


Performance by 4th Wall

NDSS Team– Celebrating 40 years

Karen Gaffney– Stepping Up To Our Challenges

Down Syndrome International (DSI)

Ambassador Ballroom

4th Wall Performance

The 4th Wall theatre program is specifically designed for everyone be that students with special needs or seniors looking for a fun, new adventure. The process of learning about the theatre and rehearsing a live show promotes teamwork, cooperation, belonging, work ethic, memory, leadership, social skills and maybe most importantly; it’s fun!

The 4th Wall team is thrilled to take you through the music of Detroit during this fantastic performance to provide you with more history about the Motor City!

Video: Working is our right! A video about work and employment from people with Down syndrome around the world

Opening Plenary

Our opening session will kick off the Adult Summit exploring the stages of life as an adult with Down syndrome – from young adults discovering the possibilities available, living a meaningful life, moving toward retirement, through aging with dignity.


9:00 am – 9:15 am BREAK
9:15 am – 10:30 am Breakout Sessions
 Aging Well Together (Part 1)

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 Michigan

Beth 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

Mitchell Levitz, Self-Advocate


Breakout Room: Ambassador Ballroom

Getting older holds many promises as well as challenges and uncertainties. A considerable 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 much appreciated.



 Self-Advocates Talk Employment

Austin Underwood, Owner of Austin’s Underdawgs

John and Mark Cronin, John’s Crazy Socks

Brandon Gruber, NDSS Board Member

 Breakout Room: Ontario West

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.

Social Media for Friendships, Employment & Promotion

Josh Harlow, Senior Vice President, Jones PR, Senior Communications Advisor, NDSS

Taylor Ketchum, Director of PR and Social Media, Jones PR, Communications Advisor, NDSS


Breakout Room: Richard A & B

This session will focus on ways our self-advocates, parents and caregivers can interact with each other and NDSS through social media. It will discuss how LinkedIn can be used to connect with potential employers and other working/job seeking self-advocates. The session will also discuss tips on how to use social media to promote your local events, fundraisers, appearances or small businesses.


Planning for the Future

Jerry Hulick, Founder, Caring Consulting Group

Breakout Room: LaSalle A & B

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.


Speak Up: It’s Your Right!

Sarah Mueller, Sibling Marlene Cummings, Speech Language Pathologist and Augmentative and Alternative Communication Consultant

Anna Tansey, Special Educator


Breakout Room: Brule A & B

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 (listening, speaking, reading and writing) is how 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.” Developed by the National Joint Committee for the Communication Needs of Persons with Severe Disabilities, a guiding document, The Communication Bill of Rights, states that each of us has certain rights to participate fully in communication interactions and what that looks like in daily interactions. To fully embrace “communication” we will also explore the “Literacy Bill of Rights,” and the impact literacy has on advocacy.

Supporting Caregivers at Home, at Work, and in the Community

Grace Whiting, J.D., President and CEO, National Alliance for Caregiving

Tim Niyonsenga, L.M.S.W., Program Officer, Michigan Health Endowment Fund


Breakout Room: Marquette A & B

This session will blend a global  – to – national policy perspective of supporting Caregivers in the community. The bulk of the time will discuss how to build up the community and improve individual supports.



10:30 am – 10:45 am BREAK
10:45 am – 12:00 pm Breakout Sessions
Aging Well Together (Part 2)

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 Michigan

Beth 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

Mitchell Levitz, Self-Advocate

Breakout Room: Ambassador Ballroom

Getting older holds many promises as well as challenges and uncertainties. A considerable 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 much appreciated.

Healthy Sexuality and Healthy Relationships for Individuals with Developmental Disabilities

Susan Kahan, the University of Illinois at Chicago, Institute on Disability and Human Development

 Breakout Room: Ontario West 

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. Also, 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.

Join the Global Self-Advocacy Movement!

Nathan Rowe, Capacity Development Officer
Down Syndrome International

Breakout Room: Richard A & B

Down Syndrome International works to promote self-advocacy around the world. Self-advocacy is a powerful tool for people with Down syndrome to make decisions about their lives and have a positive impact on the world around them. We believe everyone can be a self-advocate if they have the right support.

This workshop will explore what self-advocacy is and why is important. It will look at how people with Down syndrome can become self-advocates and what support they might need.

This is an inclusive workshop – we will explore this topic with people with Down syndrome and their supporters.

 ABLE Accounts: A Discussion with Leading Programs

Sarah Pennington, Senior Marketing Communications Associate, ABLEnow

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

Stuart Spielman, Senior Vice President, Advocacy, Autism Speaks

Breakout Room: LaSalle A & B

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.

  • ABLE Act history
  • ABLE account features
  • Who is eligible for an ABLE account?
  • What can ABLE funds be used for?
  • Features of each  (tax implications and state-specific features)
  • Have you opened the ABLE Account and what is ABLE and who is eligible?
  • FAQ
Understanding Post Secondary Options for Individuals with Intellectual Disabilities

Bud Buckhout, Director of InclusiveU – Associate Director of Taishoff Center

Breakout Room: Brule A & B

Postsecondary options for students with intellectual disabilities must be highly responsive to changing needs and meeting the needs of a diverse population. Inclusive U at Syracuse University is in a constant state of evolution based on our assessment of student needs and their desired outcomes. Come join the discussion about methods to keep programs current.

Individuals will be able to :

  • Have an overview of how to access information on Post-Secondary programs
  • Develop a guide to collecting data on post-secondary programs
  • Create a worksheet to use when applying to programs
  • Looking at current research to guide the process of selection
  • How does UDL (universal design for learning) play a role in the selection
12:00pm – 1:30 pm LUNCH BREAK 
 1:30 pm- 2:45 pm                                                                                  Breakout Sessions
Things You Want to Know – Using Group Homes for Dementia Care for Adults with Down Syndrome

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

Kathy Service, RN, MS, FNP-BC

Breakout Room: Ambassador Ballroom

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 may be 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.

The Tale of Two Friends

Fionn Crombie Angus, Self-Advocate

Doug Fry, Self-Advocate

Breakout Room: Ontario West

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 five years, and have met six times during that period. During this session, Fionn and Doug will talk about their friendship.


Estate Planning for You and Your Family

Michael Toobin, Esq.


Breakout Room: Richard A & B

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
Promoting Health and Wellness for Adults with Down Syndrome

Mary Borman, Self-Advocate

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


Breakout Room: LaSalle A & B

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 consist of 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.

Changing the Playing Field

Karen Gaffney, Self-Advocate

Breakout Room: Brule A & B

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!!!

#DSWORKS® Employment: An Affiliate Perspective

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


Breakout Room: Marquette A & B

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.


2:45 pm – 3:00 pm BREAK
 3:00 pm- 4:15 pm                                                                                   Breakout Sessions
A Conversation about Peer Support

Lisa Ferretti, LMSW Research Assistant Professor and Director of Strategic Initiatives at Temple University School of Social Work in the College of Public Health

Jadene Ransdell, Down syndrome & Alzheimer’s Family Advocate, Co-chair, NTG Family Advocacy and Support Work Group

Mary Hogan, MAT, Family Advocate. Sibling, Co-chair, NTG Family Advocacy and Support Work Group

Philip McCallion, Ph.D., Professor and Director, School of Social Work, Temple University



Breakout Room: Ambassador Ballroom

Please join us in conversation about peer support and what it means to you or families you know. People with Down syndrome are living longer. Many are aging and some now develop Alzheimer’s disease. With that diagnosis comes unique challenges. We recognize that accessing support at this time of life has been very difficult for many families around the country. Nearly three years ago, the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) created the first national online support group in hopes of helping families to learn, cope and care for their loved ones with Down syndrome and Alzheimer’s disease. The NTG and Temple University are collaborating on a project to increase the availability of online peer support for families and caregivers of people with Down syndrome and Alzheimer’s Disease. We’ll share information about the Peer Support Project and how you or an organization in your community might be involved. To be most effective we want and need to learn from you!



Emergency Response

Mitchell Ross, Milwaukee PD

Breakout Room: Ontario West

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.

Empowered Families have Powerful Siblings

Anita Raghavan, Ph.D., Parent

Tavrick Lawless, Self-advocate

Maura Danehey, Sibling

Sarah Mueller, Sibling

Rachel Mueller, Self-Advocate

Brenna Hoorn, Self-Advocate

Megan Makowski, Sibling



Breakout Room: Richard A & B

A panel of siblings will share the highlights of their relationships and involvement in supporting a brother or sister with Down syndrome (DS). Posed questions will facilitate a discussion about decision sharing, elements of joy and unanticipated challenges encountered in their particular roles.




Co-Occurring Medical Conditions in Adults with Down Syndrome

Maria Dellapina, CEO /Founder Specs4us

Pamela Dixon, Director of Clinical Services and Inclusion, Autism Speaks

Breakout Room: LaSalle A&B

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

Why Setting Up a Special Needs Trust is Good Planning

Andrew Morris, MBA, CSA, Prudential Advisors

Breakout Room: Brule A & B

The object of this session is to provide the audience with a better understanding of how a special needs trust should be established and why it is important to have if you have a family member with special needs.



Project SEARCH

Cathy Schmidt , Project SEARCH MI Leadership Team



Breakout Room: Marquette A&B

Project SEARCH was developed at Cincinnati Children’s Hospital Medical Center, a research environment that fosters visionary thinking and innovation. It all began in 1996 when Erin Riehle was Director of Cincinnati Children’s Emergency Department. Erin felt that, because the hospital served individuals with developmental disabilities, it made sense that they should commit to hiring people in this group. She wondered if it would be possible to train people with developmental disabilities to fill some of the high- turnover, entry-level positions in her department, which involved complex and systematic tasks such as stocking supply cabinets. As a starting point, Erin presented her ideas to Susie Rutkowski, then the special education director at Great Oaks Career Campuses. Erin and Susie formed a partnership that was instantaneous, and together they launched Project SEARCH.

Since its inception, Project SEARCH has grown from a single program site at Cincinnati Children’s to a large and continuously expanding international network of sites. Project SEARCH’s primary objective is to secure competitive employment for people with disabilities.

4:15 pm – 4:30 pm BREAK
 4:30 pm- 5:30 pm                                                                    
Day One Closing Plenary

Johnny W. Collett, Assistant Secretary for Special Education and Rehabilitative Services

Breakout Room: Ambassador Ballroom



Saturday, April 6, 2019

7:00 am – 5:00 pm

7:00 am – 9:00 am

DS Works(R) Marketplace and Exhibitor Hall


7:00 am to 8:00 am Continental Breakfast
8:00 am – 9:00 am
Opening Plenary  Ambassador Ballroom
9:00 am – 9:15 am BREAK
9:15 am – 10:30 am Breakout Sessions
Medications and People with Down syndrome

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

Breakout Room: Ontario West

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. By 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.

Aging Matters: How NDSS Affiliates can 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)

Dawn Nuoffer, Executive Director, Down Syndrome Association of Wisconsin (DSAW)

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



Breakout Room: Richard A & B

Representatives from the Down Syndrome Network of Arizona and the Down Syndrome Association of WI will provide ideas on how to develop programs tailored for adults with Down syndrome that focus on a healthy transition into older adulthood. Aging really does matter, and these affiliates will introduce program models designed for adults with Down syndrome, in addition to their parents, caregivers, and family members. These programs provide a time to network with each other, share knowledge and experiences, and support each other.




Post-Secondary Education: What Are Your Options?

Jessie Green, Program Manager, Ohio State University

Cathryn Weir, Director,  Think College National Coordinating Center



Breakout Room: LaSalle A&B

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.


End #LawSyndrome: How We Can Get Rid of the Antiquated Laws Affecting Those with Down Syndrome

NDSS Advocacy & Public Policy Team

Breakout Room: Brule A&B

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 keep fighting for financial independence and making ABLE accounts more accessible to a broader population of the disability community. To do this, we need your help.

Making Employer Partnerships Work

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

Devon Adelman, Lab/Office Aid, Universal Cells, an Astellas company

Debbie Moore, Rotary Partners for Work Coordinator, WISE

Richard Wilson, King County School to Work Program Manager

Shelley Dillion, Operations/SR. Human Resources, Universal Cells, an Astellas company


Breakout Room: Marquette A&B

King County leads Washington State in successful supported employment, largely because of great partnerships. 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. Devon Adelman’s employment at Universal Cell’s is an example of these efforts.



10:30 am – 10:45 am BREAK
10:45 am – 12:00 pm Breakout Sessions

Advanced Care Planning

Jane Boyle, 40+ years in non-profit strategic planning & Fundraising, Sister

Jeanne R. Kerwin, DMH, CT


Breakout Room: Ambassador Ballroom

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.


Enchanted Objects for Everyday Life

Lili Dwight, Founder, Galactic Smarties


Breakout Room: Ontario West

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?

*Limited to 25 Participants: Sign up at the Galactic Smarties Exhibitor Table

Grief and its Complications in Individuals with Intellectual Disabilities

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

Breakout Room: Richard A & B

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.

Social Etiquette Discussion for People with Down Syndrome

Rebecca Partridge, Director, Down Syndrome Program at Virginia Mason, Section Head, Primary Care Issaquah

Breakout Room: LaSalle A&B

This session will include lessons on safety and body autonomy as well as discussions on social etiquette.

You Have a Special Needs Trust – Now What?

Rob Wrubel, CFP® AIF® AEP®

Breakout Room: Brule A&B

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.

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

Breakout Room: Marquette A&B

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.

12:00pm – 1:30 pm LUNCH BREAK 
 1:30 pm- 2:45 pm                                                                                    Breakout Sessions
Learn to Tell Your Story

Devon Adelman, Seattle University Buddy Coordinator

Angela Martin, Self-Advocate, Board Member of the Down Syndrome Community of Puget Sound


Breakout Room: Ambassador Ballroom

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 share their life stories, network and advocate professionally. It will also focus on using public speaking skills in job preparation.


Independent Living: Decisions, Safeguards, Supports and Success

Cameron Shomo, Self-Advocate

Douglas Rogers, Self-Advocate

Christopher Smith, Chalgian & Tripp Law Offices

Daniel Leonard, Self-Advocate, Student

Laurie Leonard, Parent

Daniel Moloney, Self-Advocate

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





Breakout Room: Ontario West

Housing and Independent Living Panel which will discuss moving out, housing plans and living independently.







Alzheimer’s vs. Pseudo-Dementia

David Smith, MD, Founder Down Syndrome Clinic of Wisconsin

Breakout Room: Richard A & B

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.

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

Breakout Room: LaSalle A & B

This program is designed to help attendees learn more about common behavior change in those with Down syndrome 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.

HOW TO: Create a Special Needs Plan that Allows Your Child to Live a Purposeful and Impactful Life

Phillip Clark, Founder & President of ENABLE Special Needs Planning

Breakout Room: Brule A & B

At ENABLE, we believe that your child was made on purpose — and for a purpose. We also believe that your child has the ability to live an impactful life that makes a positive difference. Special Needs Planning should enable you to confidently answer the following questions: “What does a purposeful and impactful life look like for my child today–and every day in the future?” and “How do I make sure my child is able to live this GREAT life?”

In this interactive workshop, we will share with you three changes to Special Needs Planning that you need to know about, educate you on the five essential areas of Special Needs Planning (Vision, Life, Resource, Financial, Legal), and show you how you can create a Special Needs Plan that enables your son or daughter to live a purposeful life.

The true benefit of planning is the peace of mind you’ll gain from knowing that your family is well prepared for today – and the future!

Down Syndrome, Neurodiversity, and “Different Brains”

Dr. Harold “Hackie” Reitman, M.D. – Founder & President, Different Brains Inc.

Breakout Room: Marquette A & B

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.

2:45 pm – 3:00 pm BREAK
 3:00 pm- 4:15 pm                                                                                   Breakout Sessions
Alzheimer’s Disease and Home Safety Modifications

Kate Pierce, LMSW, Dementia and Disabilities Supportive Services Program Director Alzheimer’s Association – Greater Michigan Chapter

Breakout Room:  Ambassador Ballroom

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.

Stand up for Downs – Improvaneers

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

Breakout Room: Ontario West

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!)

Guardianship and Alternatives to Guardianship

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

Leah Ortiz, Executive Director of The Arc of Calhoun County, a Chapter of The Arc USAnne Tucker Roberts, Teacher, Guardian, Author


Breakout Room: Richard A & B

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.


Understanding ABLE Accounts

Doug Jackson, Deputy Director, STABLE Account, Office of the Ohio Treasurer of State

Breakout Room: LaSalle A & B

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

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)

Breakout Room: Brule A & B

Conference participants will learn about progress in studies being supported by the 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.

Wind Down the Day In a Healthy Way Breakout Room: Marquette A & B
4:15 pm – 4:30 pm BREAK
 4:30 pm- 5:30 pm                                                                                   Closing Plenary
Day Two Closing Plenary:

John and Mark Cronin, Co-Founders of John’s Crazy Socks

Breakout Room: Ambassador Ballroom

Join us as we conclude our Summit and prepare to go home, continuing our efforts to educate, advocate and celebrate adults with Down syndrome.

5:30 pm – 7:00 pm BREAK/Dinner On Your Own
7:00-9:00 pm                                                                                            NDSS DANCE PARTY!