Sunday, April 8, 2018

1:00 pm to 5:00 pm
Registration Pick up Down Syndrome Adult Summit information at the Westin so you can plan which sessions you want to attend.

Monday, April 9, 2018

Health & Research (HR), Inclusive Education (IE), Community Integration (CI),
Economic Self Sufficiency (ESS), Employment (Meaningful Day) (E/MD), Older Age & Alzheimer’s (OAA)
7:00 am – 5:00 pm Registration
7:00 am to 8:00 am Continental Breakfast
8:00 am – 9:00 am
Welcome & Opening Plenary
Sara Hart Weir, President & CEO – NDSS
Our opening session will kick off the 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. In this session we will lay the foundation for an inclusive, energized Summit educating, advocating and celebrating adults with Down syndrome!
9:00 am – 9:30 am BREAK
9:30 am – 10:30 am Breakout Sessions
Off to College! A Discussion About University-Based Education (IE)
Charlotte Woodward, Community Outreach Associate – NDSS
Sam RouxStudent Support Coordinator – Taishoff Center
Stanley “Bud” Buckhout, Director, InclusiveU Program – Taishoff Center
Throughout the United States, adults with Down syndrome are participating in post-secondary education. In this session, you will hear from students who are working on or have earned advanced degrees, and learn about some of the programs that are being offered around the nation.
A Conversation with NPR’s Joe Shapiro: What We Can Do About Sexual Assault and Misconduct
Joe Shapiro, NPR Investigations Correspondent
Mary Clayton, Parent/Advocate
According to reporting from NPR, people with intellectual disabilities are sexually assaulted at seven times the rate of people without disabilities. With the momentum of the #MeToo movement, attention is being drawn worldwide to sexual assault, and it should not be ignored in our community. In this powerful session, hear from Joe Shapiro, a correspondent with NPR’s Investigations Unit, about his recently released report on sexual assault of people with intellectual disabilities. Shapiro will also be joined by North Carolina parent advocate, Mary Clayton, who will share her story about her incredible daughter, Jenna, with Down syndrome and sexual assault. For the last five years, the Clayton family has advocated for federal and state reforms to ensure all individuals with disabilities receive proper screening with support staff, training and more oversight. According to the US Department of Justice, more than 300,000 people per year suffer from sexual assault per year. Jenna’s case was reported and nothing has been done to criminalize the assaulter and ensure this never happens again to another individual with a disability. This powerful session will be moderated by Sara Hart Weir, President & C.E.O. of NDSS.
Residential Options: What are the Choices? (CI)
Paul Dolan, ABC Executive (Retired)
Jamie Dolan, Information & Referral Associate – NDSS, Self-Advocate
Bobby Lanyon, President Board of Directors, Eastern Pennsylvania Down syndrome Center
Douglas Rogers, Self-Advocate
There are many residential options available for adults with Down syndrome when they are ready to leave the family home. Learn from individuals, families, and providers as they discuss various residential options including independent, assisted and supported living.
Person-Centered Planning (ESS)
Patty Cotton, Med
The future belongs to the people who are living it. Learn what person-centered planning is and how to use tools such as PATH (Planning Alternative Tomorrows with Hope) and MAPS (Making Action Plans) to create positive futures.
Healthy Aging (HR, OAA)
Leone Murphy
We are all living longer than generations past. Attend this session to learn some simple tips that we can use to ensure we stay healthy as we age.
10:30 am – 10:45 am BREAK
10:45 am – 11:45 am Breakout Sessions
Project Search 101 (IE,ESS)
Erin Riehle, MSN, RN Founder &Y Director, Project SEARCH
Adults with Down syndrome are showing the world that endless career opportunities are available. In this session, learn about some of the successes folks with Down syndrome are experiencing and gather ideas for other possibilities to explore.
Guardianship 101 The process of pursuing legal guardianship for an adult with Down syndrome can be confusing, costly, time-consuming and very overwhelming for parents and caregivers. This session will cover Guardianship 101 with topics that include:

  • What is Guardianship
  • The types of guardianship
  • Alternatives to Guardianship
Creating & Sharing Life Stories (OAA)

Elizabeth Bodien, Sister/Guardian, member of NTG & AADMD
Jane Boyle, 40+ years in non-profit strategic planning & Fundraising

Families have shared that as their loved one with Down syndrome and Alzheimer’s have progressed through the disease, who they were before can get lost. In this session, participants will explore the steps to take to create a life story, including ties to the importance of baseline data, formats for putting together a life story as well as tips and strategies effective in supporting a person with Down syndrome who has Alzheimer’s Disease.
Common Medical Conditions in Adults with Down syndrome (HR,OAA)
Dr. George CaponeDirector, Down Syndrome Clinic – Kennedy Krieger Center
Adults with Down syndrome may be at risk for medical conditions that can cause changes in behaviors and health. In this session, you will learn about these common conditions and how to address them.
11:45 am – 12:00 am BREAK
12:00 pm – 1:15 pm
Plenary Lunch: “Healthy Lifestyle through the Lifespan” (HR)
Dr. William Sears, Dr. Sears Wellness Institute
This plenary session will address healthy lifestyle for people through all life stages. The session will include information and tips on nutrition, lifestyle, exercise, and attitude, and will highlight specific considerations for people with Down syndrome.
1:15 pm – 1:30 pm BREAK
1:30 pm – 2:30 pm Breakout Sessions
DS Connect & Research Opportunities (HR)
Sujata Bardhan Ph.D(c), DS-Connect® Registry Coordinator, National Institutes of Health(NIH)
DS-Connect® is a powerful resource where people with Down syndrome and their families can connect with researchers and health care providers. In this session, participants will learn how they can take part in clinical studies on Down syndrome, including studies of new medications and other treatments, and take confidential health-related surveys that are aimed at better understanding of the health of people with Down syndrome across their lifespans.
Social Networking & Independence
Pam Vanderlee
Technology is becoming increasingly powerful as a tool to meet friends. Joyful is an app, currently, in development, that will instantly connect individuals Down syndrome with people in their community who have common interests and probably like to do the same kinds of things. This discussion will include more information about the app from the creators and developers. During the second half of the session, focus groups will be arranged to allow the Joyful team to hear your ideas and opinions.
Planning for the Future Economically (ESS)
Jerry Hulick, Senior Planner, The Washington Group Special Care Planning Team Caring Consulting Group – Virginia Tech
This session will explore the financial needs of a person with Down syndrome across their adult life including education, training, residential, healthcare and long-term care. It will include information on Special Needs Trusts and the new Able Trust.
Partnering in Care: The Importance of Future Planning and Self-Care for Family Caregivers (OAA)
Maja Pasovic, M.A., M.Ed., Special Assistant to the CEO, National Alliance for Caregiving
Joe Caldwell, Ph.D., Director, Long-Term Services & Supports Policy, National Council on Aging, NAC
This session examines the importance of self-care, health promotion and maintenance of physical, mental, and emotional health for the individuals providing care for an older adult with Down syndrome and/or Alzheimer’s disease or other debilitating health issue. The importance of a quality lifestyle for the care partners (in the caregiving community, care partners are also known as caregivers) will be discussed, with the aim of demonstrating how the health of the care partner can impact the whole caregiving experience, and in effect, the overall health of their family member living with Down syndrome. The session will especially focus on the relevance of future planning for the care partners, including legal and financial planning. Finally, the presenters will discuss the availability of services and support programs for the care partners of persons with I/DD.
2:30 pm – 2:45 pm BREAK
2:45 pm – 3:45 pm Breakout Sessions
Employers Panel – Employment of People with Down syndrome (OAA)
Dave Burton, Owner, Capital Candy Jar

In this session, several employers will share their successes and the benefits of employing individuals with Down syndrome. Self- Advocates will share their perspectives of being in an inclusive workplace.
Self-Advocates Speaking Out (CI) This session is a great way for Self-Advocates to network and speak out with other self-advocates. Hosted by the NDSS Self-Advocate Advisory Board (SAAB), the 2018 Self-Advocate Speaking Out discussion will focus on Advocacy in Action: Advocating in all aspects of life. We will be exploring different areas where advocacy is activated including education, health and research and employment. The self-advocates from the SAAB will also provide  tips and tools to further develop advocates advocacy skills.

*This session is only for self-advocates 18 and older*

Decline in Adults with Down syndrome; Assessment and Care Considerations (OAA)
Dr. Seth Keller, MD-Neurologist, NTG-Co-Chair
Kathy Service, RN, MS, FNP-BC, 
Some adults with Down syndrome will experience changes in their behavior, skills and memory as they age. In this session, participants wil learn more about what might be causing these changes, identify ways to capture the individual’s personal best, and use differential diagnosis to rule out or identify the source of changes. Participants will explore Down syndrome Regression and Alzheimer’s disease and its progression.
Focus on People with Disabilities: New Financial Tools and Resources (ESS)
Olivia Calderon, Senior Advisor, Office of Financial Empowerment Consumer Financial Protection Bureau
Focus on People with Disabilities is a companion guide to the Your Money, Your Goals financial empowerment toolkit. Developed by the Consumer Financial Protection Bureau, it contains specialized information, tips, and 11 tools based on insights from people with disabilities and from organizations that serve them. It is based on the core philosophy that everyone has a right to control their own money and make their own financial decisions.
The Role of Siblings in the Life of a Person with Down syndrome (OAA)
Mary Hogan, MAT, Family Advocate
Kathy Srisc-Stoehr, Caregiver Advocate, member of NTG
Margie Rogers, Ph.D Psychology, sister
Embry Burrus, Licensed speech-language Psychologist
A panel of siblings will facilitate a discussion and share how they have been involved in supporting a brother or sister with Down syndrome.
3:45 pm – 4:15 pm BREAK
4:15 pm – 5:00 pm
Day One Closing Plenary
Rob Snow, Motivational Speaker
Minimize the Mountain
In this session, participants will gain a humorous, powerful and motivational experience about managing through life’s biggest challenges.
5:00 pm – 7:00 pm Supper on Your Own
7:00 pm – 9:00 pm
Dessert Reception & Facilitated Networking The celebration continues! Join us for dessert and network with self-advocates, family members and other advocates. We’ll have opportunities to connect with those who share interests – education, community, employment, economics, health, and Alzheimer’s.

Tuesday, April 10, 2018

Health & Research (HR), Inclusive Education (IE), Community Integration (CI),
Economic Self Sufficiency (ESS), Employment (Meaningful Day) (E/MD), Older Age & Alzheimer’s (OAA)
7:00 am – 5:00 pm Registration
7:00 am to 8:00 am Continental Breakfast
8:00 am – 9:00 am
Opening Plenary – Different Brains (HR)
Dr. Harold “Hackie” Reitman, M.D. – Founder & President of 501(c)3 nonprofit, Different Brains Inc.
As we continue to educate, advocate and celebrate adults with Down syndrome join us for an early morning session on “Different Brains.” Understanding and accepting the basic variations in the human brain is known as neurodiversity. Learn how this can help us celebrate the differences in people with Down syndrome to improve their lives and maximize their potential.
9:00 am – 9:30 am BREAK
9:30 am – 10:30 am Breakout Sessions
Self Determination: You have the right to be uniquely you! (HR)
Kate FialkowskiDirector, Academic Programs, Institute on Disability, Temple University
You are uniquely yourself! You are note merely an extension of someone else or a company or other entity. As uniquely you, you have freedom (and should be supported in this freedom) to discover your uniqueness and act on your uniqueness including through communications, other types of personal expression, and actions. This presentation will talk about 1) this inherent self-ness, 2) the principles of self determination 3) the factors that support self determination for all.
Road Map to Success (E/MD)
David Egan, Self-Advocate
Paul Eder, Co-author of “Firestarters: How Innovators, Instigators, and Initiators Can Inspire You to Ignite Your Own Life”
What is the difference between those bold enough to pursue their dreams and others who never ignite their lives? Are you looking for a way to make your career dreams come true? Meet Paul Eder, co-author of “Firestarters: How Innovators, Instigators, and Initiators Can Inspire You to ignite your own life” and  join David Egan as he describes his road map to success. He will share tips for Parents and Self-advocates to land jobs and venture on their journey in pursuit of a career. In addition, David will also share resources for Employers to make employing individuals with Down syndrome a good business investment. David and Paul will have  participants  leave the session empowered to becoming a part of an inclusive workforce.
Tips for Caregiving: Helping People with ID & Dementia Live Life to the Fullest (HR,OAA)
Adel Herge, OTD, OTR/L, FAOTA, Associate Professor & Director of the BSMS OT Program at Thomas Jefferson University in Philadelphia
Providers, families, healthcare professionals and communities that support persons with ID and dementia all face many complex and diverse challenges throughout the journey of supporting an individual with ID and dementia. Through this presentation participants will explore innovative ways to support persons with ID and dementia to live person-centered, quality lives that enhance their participation.
Create a Vision Plan for your Loved One: An ESSENTIAL Element of Your Special Needs Planning Process (HR, OAA)
Phil Clark, Founder & President of ENABLE Special Needs Planning
During this workshop-style session, participants will learn why a Vision Plan is essential to your special needs planning process. You will also create your own Vision Plan—for FREE—using our online, interactive tool. Participants will leave this session with a clearer idea of what a GREAT life looks like for your loved one and how to align every element of your special needs plan with his or her unique hopes, goals, and dreams. We encourage participants to bring a laptop/tablet/smartphone to this session.
10:30 am – 10:45 am BREAK
10:45 am – 11:45 am Breakout Sessions
Healthy Relationships for Adults with Down syndrome (HR)
Connie Senior, LMSW – Young Adult Institute, Curriculum Developer, Medicaid Service Coordinator Administrator
Adults with Down syndrome are no longer prohibited from getting married. In this session, the discussion will focus on casual friendships through more intimate relationships and how people with Down syndrome can build appropriate relationships with others.
Grassroots Advocacy (IE,CI) This session will explore ways that adults with Down syndrome and family members can become effective advocates in their local communities, their states, and the nation.
Explaining Dementia
Matt Janicki, Research Associate Professor at DHD, UIC
Sandra Fournier, Oversight Manager at Neighborhood Health Plan of RI
Jenny Sladen, Director, National Initiatives at The Arc of the US
Dementia is a condition that is increasingly affecting more families as parents age, and as adults with Down syndrome grow older. We know the root causes of various dementias, but we are not always sure how to explain what dementia is and we are not always certain when is the perfect time to have “that conversation.” The NTG is collaborating with other organizations, including NDSS and The Arc, to develop an informative guide – including an “easy language” format that will help most adults with Down syndrome understand what dementia is, and how they may help a family member or friend who is affected. Come and join us in a lively discussion on issues that this topic raises, give us your “two cents”, and help us by commenting on a draft of the guide
11:45 am – 12:15 pm BREAK
12:15 pm – 1:00 pm
Closing Plenary & Lunch (HR,IE,CI,ESS,E/MD,OAA) Join us as we conclude our Summit and prepare to go home, continuing our efforts to educate, advocate and celebrate adults with Down syndrome.
**Please note that this schedule is subject to change.