May 7-9, 2020

Register today!


Wednesday, May 6

Registration: 3:00 pm-7:00 pm


Thursday, May 7

Registration: 8:00-11:00 am

#DSWORKS® Marketplace Exhibitor Hall from 8:00 am- 5:00 pm

Sessions: 8:30 am-5:30 pm

Networking Event: 7:30-9:00 pm


Friday, May 8

#DSWORKS® Marketplace Exhibitor Hall from 8:00 am- 5:00 pm

Sessions: 8:30 am to 5:30 pm

Dance Party: 7:30-9:00 pm


Saturday, May 9

#DSWORKS® Marketplace Exhibitor Hall from 8:00 am- 12:00 pm

Sessions: 8:30 am – 12:30 pm

DISCLAIMER: This Session list is updated daily and does not reflect the exact dates and times that each session will take place. More sessions will be reflected in the final schedule.

 Aging Well Together (Part 1) (A)

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

Dana Kennedy, State Director of Arizona AARP

Tammy L Bassford, MD, Associate Professor, Family and Community Medicine

Simon Holzapfel, Clinical Asst Professor, ASU

Beth Marks, Health Matters, Research Associate Professor in the Department of Disability and Human Development, University of Illinois at Chicago

Mitchell Levitz, Self-Advocate

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.
Decline in Skills & Regression in Adolescents and Adults with Down syndrome

Brian Chicoine, MD, Medical Director of the Adult Down Syndrome Center in Park Ridge, IL.


There is a growing number of clinical case reports of adolescents and adults with Down syndrome who have shown regression in cognitive and adaptive functioning, motor function, communication skills, and behavior. As reported by their families, this regression occurs following a period of stable functional skill acquisition in adolescents or adults. There are many physical, psychological, and social reasons individuals with Down syndrome may show a decline in skills. While there have been several articles published about regression in adolescents and adults with Down syndrome, there remains a great deal that is still unknown. In this presentation, this will be referred to as “regression syndrome.”  The discussion will focus on causes other than autism in younger children and Alzheimer’s disease in older adults.  Clinical features, evaluation, differential diagnoses, treatment, and prognosis will be discussed. Emphasis will be given to some of the most challenging patients who manifest catatonia, auto-immunity, sleep apnea, and severe mental health symptoms.  Case studies will be shared and time for discussion will be provided.
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)
NIH resources for Down Syndrome

NIH supported DS research for adults

DS-Connect and resources for adults with DS

INCLUDE project overview and summary

 Hospital-Based Special Needs Programming

Doreen Bestolarides

People with Intellectual/Developmental disabilities (IDD) experience high rates of hospitalization, compared to people without DD/IDD. Problems in the healthcare setting arise from communication issues, understanding of baseline ability, sensory needs, cues for behaviors/distress and challenges coordinating discharge needs. Extending best practices for individualized care is a collaborative effort. A framework is necessary to align standards for care, partnering for a person/family-centered care and mutual goal setting.
Medical Home Care – family-centered care, shared decision making, supported decision making

Robin BlitzSenior Medical Director for the Special Needs Initiative at UnitedHealthcare

 We will discuss medical home care and how this incorporates family-centered care, shared decision-making and with the transition to adult care, the use of supported decision making. A medical home is not a building or a place; it is a way of delivering comprehensive, quality, compassionate care that includes family-centered care, shared decision making, the transition to adult care, and supported decision making. Family-centered care provides a responsive system of services that includes coordinated medical, educational, therapy and community services. Shared decision making promotes patient, family, and clinician collaboration with the ultimate goals of improved health care and patient/parent satisfaction. Supported decision-making is a way to support an adult with a disability to make life decisions about things such as medical care, living arrangements, supports desired, and vocation.
Growing Older and Wiser: Ways to Support Adults with DS in Successful Aging

Adel Herge, Associate Professor, Director, BSMS OT Program, Department of Occupational Therapy, Thomas Jefferson University in Philadelphia, PA

Mary M. Stephens, MD, MPH, Associate Professor in the Department of Family and Community Medicine at Thomas Jefferson University in Philadelphia, PA

In this session, two members of the interprofessional team (a primary care physician and an occupational therapist) will share best practices related to healthy aging. Participants will learn current information and strategies to manage primary and secondary conditions related to physical health as well as strategies to modify the physical and cognitive environments to support full participation and engagement in life in individuals with Down syndrome.



Beyond Down syndrome


Teresa Unnerstall, DS-ASD Consultant and Author

 This interactive session will address the unique challenges associated with a dual diagnosis of Down syndrome and autism spectrum disorder (DS-ASD), and/or an additional diagnosis such as ADD/ADHD, OCD, and Apraxia of Speech.  Often families dealing with a secondary diagnosis pull away from DS support groups because they don’t fit in. They can feel isolated and struggle with the sense that they are not doing enough for their child.This session will include:

*Identifying the additional challenges associated with DS-ASD and other secondary diagnoses in teens and adults.

*A look at Nick’s journey navigating a dual diagnosis of DS-ASD as a young adult, and how to provide productive and meaningful life experiences.

*Discussing what services and supports are best suited to help individuals reach their full potential and vision for the future.

*Addressing the complexities and needs that families face.

*Collaborating as a group on strategies and solutions to better navigate a course that includes more than Down syndrome.

Live a Healthy Life! 5 Ways to Promote Your Health

Katie Frank, PhD, OTR/L, Occupational Therapist III, Advocate Medical Group Adult Down Syndrome Center

Laura Chicoine, Project Manager, Research and Education, Advocate Medical Group Adult Down Syndrome Center

Living longer and healthier lives is an active process. Adults with DS can and should be encouraged to participate in their own health promotion. But where should we start? This presentation will share 5 areas to focus on when making healthy lifestyle choices. The presenters will discuss why these five areas are important, facilitate activities to reinforce the information, and share strategies that can be incorporated at home and in the community. This presentation is intended for individuals with Down syndrome.
Non-Medicinal Strategies to Promote Health and Mental Wellness

Katie Frank, PhD, OTR/L, Occupational Therapist III, Advocate Medical Group Adult Down Syndrome Center

This presentation will share information about three different non-medicinal strategies that can be used to promote health and mental wellness. The strategies include sensory techniques, visual supports, and the development of socially appropriate behaviors. Details will be shared on how sensory techniques can help with transitions and behavior (especially during medical procedures and self-care tasks), visual supports can be used to teach new skills or improve task performance, and socially appropriate behavior helps with having healthy social interactions at home and in the community. Resources will be shared.
Live a Healthy Life! 5 Ways to Promote Your Health – For Families, Caregivers, and Professionals 

Brian Chicoine, MD, Medical Director of the Adult Down Syndrome Center in Park Ridge, IL.


This presentation will share 5 areas to focus on when making healthy lifestyle choices. The presenter will discuss why these five areas are important, describe activities that can be used to reinforce the information, and share strategies that can be incorporated at home and in the community. This presentation is intended for families, caregivers, and professionals.


Advances in Down Syndrome Research

James HendrixChief Science Officer at LuMind IDSC Foundation

Thanks to recent advances in medical research in the past several decades, life expectancy and quality of life of people with Down syndrome have improved dramatically. However, major healthcare challenges remain and are the focus of new research. This presentation will review some of the areas of research that have the potential to bring new treatment options to families in the future. Topics such as digital medicine, gene therapy, autoimmune conditions, and issues related to independence will be discussed. In addition, LuMind IDSC will provide results of a recent family survey on independence. The session will also inform families and self-advocates on how they can support, participate and become educated on research.

This session will be directed toward families, caregivers and self-advocates to help better understand Down syndrome research. The speaker will provide the information in a way that is understandable to non-experts and time for Q&A at the end will be included.

Sleep and Sleep Apnea in Down Syndrome

James HendrixChief Science Officer at LuMind IDSC Foundation

Sleep has an important and underappreciated role in human health. Unfortunately, disrupted sleep is often untreated and very common in children and adults with Down syndrome. Obstructive Sleep Apnea (OSA) is a common cause of disrupted sleep in Down syndrome. Untreated sleep apnea is associated with many health issues including daytime sleepiness, impaired cognitive function and is even with Alzheimer’s disease later in life. This session will describe options for the diagnosis and treatment of OSA. Results from a recent LuMind IDSC survey of families on sleep apnea will also be presented.
Recent Advances in Alzheimer’s Disease in Down Syndrome Research

James HendrixChief Science Officer at LuMind IDSC Foundation

People with Down syndrome (DS) are at a much higher risk for Alzheimer’s disease (AD) than the general population. In addition, people with DS will experience symptoms of AD in their 40’s and 50’s, decades earlier than in the general population. With this serious health care crisis, new research efforts have been launched in AD in DS with the hope that a better understanding of the disease will lead to new and better treatments. Several new research studies will be highlighted including the Longitudinal Investigation for Enhancing Down Syndrome Research (LIFE-DSR) study led and sponsored by LuMind IDSC.
Becoming a Sexual Self Advocate

Katherine McLaughlin, Founder of Elevatus Training, LLC


People with developmental disabilities are often left out of the conversation about sexuality, almost as if they are incapable of having thoughts, feelings, and needs. In reality, they, too, are sexual beings that need information and skills for making healthy decisions about sexuality. One of these skills in the ability to be a sexual self-advocate. As defined by Green Mountain Self Advocates, Sexual Self Advocacy (SSA) means: “Speaking up for yourself, sexually” “Getting information” “Taking a stand” “Saying to whomever – this is my choice” “Stating your sexual limits and desires with your partner, respecting others limits and desires. “Starting to do what you want with relationships” During this workshop, self-advocates, parents, and professionals will learn what is sexual self-advocacy, explore ways a person can become a sexual self-advocate, practice speaking up for the right to be in a relationship and for your rights within a relationship, and learn ways to support people with disabilities to become sexual self-advocates.
About George

Patricia Burkes, Professional, George’s caregiver, almost-a-sibling, legal conservator, lifelong friend, and advocate forever

Are you a Senior Baby Boomer with Down Syndrome?
Do you live with a Senior Baby Boomer with Down Syndrome? Ever wonder whose picture is on the cover of the NDSS publication, AGING AND DOWN SYNDROME – A HEALTH AND WELL-BEING GUIDEBOOK? Learn about George from his lifelong neighbor and friend, who was George’s caregiver with her husband for 16 years. Hear how he communicated, navigated his world, and adapted to the ups and downs of aging with his new family. George LOVED birthdays – he was blessed with 66! See the creative “tools” used to keep him moving and healthy.”George lived in the same world we all do – he just didn’t experience it, interact with it, and express himself in a typical way. He knew happiness, love, confidence, sadness, fear, stress, abuse and pain. He knew how to work, he was exceptionally skilled at the art of playing and most of the time, George chose to be “happ-pp-py.” (from George’s Eulogy by Patty and Patrick Burkes aka The PATsx2+Spirit of George:)
My Doctor’s Appointment is About Me!

Alyssa Siegel, MD, Attending Physician at Children’s Hospital of Philadelphia

* Self-advocate friendly

In this interactive session, we will review basic ideas including why a doctor is important, when we need to see them, and how to convey important information. Through role-playing routine and problem-focused doctor visits, self-advocates will review parts of the body, as well as common symptoms and medical issues occurring in people with Down syndrome. We will also delineate members of the health care team and learn to recognize why and when help from a parent, sibling or friend is needed to assure the very best health care.

 Dementia Friends

Marty Williman,  Program Director, Ohio Council on Cognitive Health

Dementia Friends is a global movement developed by the Alzheimer’s Society in the United Kingdom and now underway in 37 countries. Participants are given a list of practical actions they can take to help someone in their community who is impacted by dementia. With funding from a grant by the Department of Health & Human Services, Administration for Community Living (#90ADPI0008-01-00) adaptations to the Dementia Friends session workbook were developed for individuals with an intellectual or developmental disability who are living with or at risk for dementia. An overview of the grant project will be included in the presentation.
 Empowering Athletes

Ronny Jones, Special Olympics Arizona Athlete

Ronny will share his life story and describe how Special Olympics Arizona has played a positive role in his personal achievements and growth. In addition, he will co-lead the presentation on how to get involved in Special Olympics Arizona’s programs as an Athlete, Parent, Professional, or Volunteer.
 A Dialogue About Dementia

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

Kathy ServiceRN, MS, FNP-BC   

This session will focus on dementia and how it affects people with Down syndrome, including what dementia effects are similar or different for adults with Down syndrome and other adults and what may be the impact of dementia at home. This will be a discussion session and attendees are encouraged to ask questions, share their experiences, and make suggestions for what NDSS and the NTG might do more to help.
Essential Tips for Supporting Individuals with Down Syndrome and Other Developmental Disabilities Affected by Alzheimer’s Disease and Related Dementia: Lessons Learned from Two State-wide Efforts



Yumi Shirai, PhD., ArtWorks Director/Assistant Professor, Sonoran Center for Excellence in Disabilities, Department of Family & Community Medicine, University of Arizona

Our panel will bring together the efforts of two statewide projects: Implementation of the Dementia Capable Care Training by the National Task Force on Developmental Disabilities and Dementia Practices (I-AADAPT), and the Arizona Dementia Capable System Expansion funded by the US Administration for Community Living including an adaptation of a nationally-recognized dementia caregiver support program (CarePRO). After presenting a summary of the two projects, we will present essential tips for supporting individuals with Down syndrome and other developmental disabilities who are affected by Alzheimer’s disease and related dementia as well as their families. Our panel has four focused areas: 1) Health Care Advocacy, 2) Positive Behavioral Support across Different Stages of Alzheimer’s Disease and the Lifespan, 3) Caregiver Self Care, and 4) Networking and Communication Within and Beyond the Team. For each topic, a panel of I-AADAPT and CarePRO representatives will collaboratively present and discuss potential challenges and practical strategies, tools and/or related resources for care partners to implement.

1) Health Care Advocacy:
After presenting common behavioral and functional changes associated with Alzheimer’s disease and other related dementia and general aging, we will discuss how to identify and document these changes as well as how to effectively communicate these changes to health care professionals for proper diagnosis and treatment.

2) Positive Behavioral Support across Different Stages of Alzheimer’s Disease and Lifespan:
After presenting common behavioral challenges and functional declines across different stages of Alzheimer’s disease, we will discuss how to provide positive behavioral support and give tips for structuring daily activities as the individuals’ functional capacities change. The importance of promoting meaningful social interaction and engagement across the lifespan will be emphasized.

3) Caregiver Self-Care:
After presenting the potential negative impact of caregiving on caregiver’s emotional and physical health, we will discuss strategies on how caregivers can manage daily challenges and stressors.

4) Communication and Networking Tips Within and Beyond the Team:
We will discuss potential challenges and strategies to support individuals with Down syndrome and other developmental disabilities who are affected by Alzheimer’s disease while working within a care team environment with differing levels of expertise (within the caregiving context as well as care team).

Self-advocacy in your community workshop providing tools & resources

John Seely, Co-Founder, Executive Director, Empowering Lives Foundation 

Self Advocacy in your community providing tools & resources will be an open workshop where you will develop a one-page profile for self-advocacy. Talk about resources available to support and empower you in your community, to set goals and a plan for the things you want to do.

We will use person-centered practices, life course planning, and show you how to create your own community map on your smartphone or tablet. This will be hands-on for you to engage learn ask and create plans to help you achieve your goals. We will also talk about goal setting and evaluation. We will also touch on national disability issues and how you can advocate for your rights.

 Come Paint with Me!

Charlie French, Creator of JustCharlieFrench

This is a hands-on, interactive workshop explores abstract art and will provide participants an opportunity to create using freeform art.
Communication Skills for Adult Life & Employment

Dr. Libby Kumin, CCC-SLP, Professor of Speech-Language Pathology and Audiology, Loyola University, Maryland


This presentation will identify and discuss speech and language skills including speech intelligibility, receptive language, expressive language, pragmatics and social language, and electronic communication skills. Research, clinical experience and practical suggestions will be shared.
 Making Adult Learning Fun

Anita Raghavan, Mother and advocate


This session will be full of practical educational and socialization tips. Successes and failures will be explored. The discussion will include how the use of “catchy”, colorful, humorous and accessible” methods encourage learning in adults with Down syndrome.
Hospice Care and Adults with Down syndrome: A Road Less Travelled

Jane Boyle, family caregiver and advocate

Leone Murphy, APN, health system

Jeanne Kerwin, Ethicist

A panel of three presenters will discuss various aspects, indicators, and timing of Hospice Care especially as it relates to the advanced stages of Alzheimer’s disease and end of life care planning for those aging with Down syndrome. Presenters will include advanced practice nurse Leone Murphy, APN, health system ethicist Jeanne Kerwin, and family caregiver and advocate Jane Boyle.

A basic understanding of:
1. The Hospice care philosophy and the benefits of Hospice for those with Down syndrome and life-limiting diagnoses.
2. The range of services available to support patients and caregivers, especially those with Down syndrome who are experiencing the progression of Alzheimer’s and dementia.
3. When to seek a Hospice evaluation.

Making the Most of a Behavioral Health Consultation for Adults with Down syndrome

Dr. Dennis McGuire, LCSW – Senior Consultant, Global Down Syndrome Foundation

Bryn Gelaro, LSW –Director of Adult Initiatives and Special Projects, Global Down Syndrome Foundation


Finding a provider who can appropriately assess mental wellness and behavioral health in adults with Down syndrome is a common concern for families and self-advocates. In this session, we will discuss what to expect and how to prepare families, caretakers and self-advocates for behavioral health consultations with their local providers. Whether you are visiting a Down syndrome clinic or a seeing a general practitioner, there are things you should be looking for before, during and after an appointment, to make sure a behavioral health consultation for an adult with Down syndrome is useful and informative. In addition, we will review the common behavioral characteristics of adults with Down syndrome and how they can be used to support overall wellness and be channeled into strengths. Through increased awareness about the process, we hope families and self-advocates leave the session feeling more comfortable talking about behavioral health with their medical provider and are better prepared to advocate for their own mental wellness!
This is the story of Fionnathan Productions, a social enterprise in Ireland run by a son (Fionn) and father (Jonathan)


Fionn Crombie Angus, Self-Advocate

Jonathan Angus, Father


This is the story of Fionnathan Productions, a social enterprise in Ireland run by a son (Fionn) and father (Jonathan). You can pronounce it Fear nothin’ – close enough.

The seed capital came from a hard-won government grant for self-directed supports, the first of its kind in Ireland. Fionn, who has Down syndrome, hired Jonathan as his assistant. The next major innovation was using a disability hiring grant to employ Fionn with a person-centered job description.

They’ve followed Fionn’s core passions to build an amazing career.

  • He is a regular fixture of the Galway arts scene: a filmmaker, visual artist, and traditional musician
  • His deep love of nature won him a place on the Heritage Council’s Experts Panel, teaching children in schools nationwide
  • To help clarify Fionn’s goals, he’s conducted over 600 video interviews, asking “What do you love about your life?”

Working with numerous organizations in seven countries, they have led advocacy courses and family consultations; published works; served on government committees; and presented at conferences worldwide.

This story will be of use to anyone interested in unique approaches to self-directed funding and/or person-centered employment. Fionnathan shows that supported entrepreneurship, with a creative approach to financing, is a robust and adaptable way to a sustainable and meaningful career.