MONDAY, April 9 – TUESDAY, April 10, 2018 – NDSS ADULT SUMMIT

**The schedule is subject to change**

Breakout sessions will include: 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 to 5:00 pm – Registration

7:00 am to 8:00 am – Continental Breakfast

8:00 am to 9:00 am – Welcome & Opening Plenary (HR, IE, CI, ESS, E/MD, OAA)

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 to 9:30 am – Break

9:30 am to 10:30 am – Breakout Sessions

Models of University-Based Educational Opportunities (IE)

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.

Residential Options: What are the Choices?  (CI)

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)

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)

We are all living longer than generations past. Learn some simple tips that we can use to ensure we stay healthy as we age.

10:30 am to 10:45 am – Break

10:45 am to 11:45 am – Breakout Sessions

Exploring Vocational Options – DS Works (IE, ESS)

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.

Being Part of the Community: Tools to Educate the Public (CI)

What does it take to create Down syndrome friendly communities? Join the NDSS Institute on Community Inclusion to identify tips and strategies to educate the public about including people with disabilities in all aspects of community life.

Creating and Sharing Life Stories (OAA)

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 throughout their adult life.

Common Medical Conditions in Adults with Down syndrome (HR, OAA)

Adults with Down syndrome may be at risk for medical conditions that can cause changes in behaviors and health. Learn about these common conditions and how to address them.

11:45 am to 12:00 pm – Break

12:00 pm to 1:15 pm – Lunch & Networking Opportunity

Find others who share your interest and phase of the journey through adulthood.

1:15 pm to 1:30 pm – Break

1:30 pm to 2:30 pm – Breakout Sessions

Volunteering, Internship, Fellowship: Gateway to a Meaningful Life

Many people find purpose in their life through the careers they have. In this session, learn about some creative options that have provided adults with Down syndrome opportunities to give back to their community and create a meaningful life.

DS-Connect & Research Opportunities (HR)

In this session, participants will learn about DS-Connect and how individuals and families can be involved. It will also look at research opportunities for adults with Down syndrome.

Planning for the Future Economically (ESS)

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.

Caring for the Caregiver (OAA)

This session will explore the importance of self-care for those who are providing care for an older adult with Down syndrome and Alzheimer’s disease or other debilitating health issues. Suggestions for ways that family caregivers/care-partners can navigate through stress and depression, and stay healthy will be discussed.

2:30 pm to 2:45 pm – Break

2:45 pm to 3:45 pm – Breakout Sessions

Employers Panel – Employment of People with Down syndrome (CI, ESS, E/MD)

In this session, several employers will share their successes and the benefits of employing individuals with Down syndrome.

Self-Advocates Speaking Out (CI)

Join self-advocates as they talk about involvement in their communities – neighborhoods, churches, recreation, jobs. Find out what it takes to ensure that all people are part of every community.

The Healthcare Advocate’s Role in Screening, Diagnosis, and Stages of Alzheimer’s Disease – OAA

Some adults with Down syndrome will experience changes in their behavior, skills, and memory that may or may not be Alzheimer’s disease. In this session, participants will explore the role of a healthcare advocate for an adult with Down syndrome, include identifying the individual’s personal best, the use of the NTG Early Detection Screen for Dementia (EDSD), steps to a diagnosis of Alzheimer’s, and changes that occur as the disease progresses.

Your Money Your Goals (ESS)

With the creation of the ABLE Trust, people with Down syndrome can now save money without affecting their benefits. In this session, participants will learn how to use their money wisely and how the ABLE Act can help support them to reach their goals.

The Role of Siblings in the Life of a Person with Down Syndrome

A small panel of siblings will facilitate discussion with session participants to share how they have been involved in supporting a brother or sister with Down syndrome. 

3:45 pm to 4:15 pm – Break

4:15 pm to 5:00 pm – Day One Closing Plenary (HR, IE, CI, ESS, E/MD, OAA)

It’s the end of a full day and we are going to spend some time reflecting on what we have shared and learned from each other. Join us as we continue to educate, advocate and celebrate adults with Down syndrome.

5:00 pm to 7:00 pm – Supper on Your Own

7:00 pm to 9:00 pm – Dessert Reception and Facilitated Networking

The celebration continues… join us for dessert and network with other 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.


7:00 am to 5:00 pm – Registration

7:00 am to 8:00 am – Continental Breakfast

8:00 am to 9:00 am – Opening Plenary – Different Brains (H)

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 to 9:30 am – Break

9:30 am to 10:30 am – Breakout Sessions

Landing a Job: Tips for Self-Advocates (E/MD)

In this session, participants will be given information that can help them in job hunting, from matching their skills to a position, completing applications and interview tips.

Resourcing Agency Help: Accessing Aging and DD Services (HR, OAA)

Adults with Down syndrome may need services that are provided through state programs. The agency charged with funding services to adults with developmental disabilities can be different in every state. Participants in this session will learn about Aging and Developmental Disability programs, and where to find the information needed to access services in their state.

Preparing and Coping with Natural Disasters

Earthquakes, fires, floods, tornadoes, hurricanes…we certainly have been experiencing many natural disasters in this country.  Participants will get ideas to help them plan for emergencies – learn what to have in place for a quick evacuation, how to prepare for power outages, and information to have available for first responders with respect to a missing person, among other tips that will be shared.

Tips for Caregiving HR (OAA)

In this session, strategies and tips to deal with new and difficult behaviors will be given that will help those supporting a person with Down syndrome and Alzheimer’s.

10:30 am to 10:45 am – Break

10:45 am to 11:45 am – Breakout Sessions

Healthy Relationships for Adults with Down syndrome (HR)

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. Learn about programs, like Partners in Policymaking, and other opportunities to increase advocacy skills.

Pain and Cognitive Disabilities (HR, OAA)

People with cognitive disabilities may lack the language required to express when they are in pain. In this session, participants will explore various types of pain and examine routines within caring services to increase awareness and knowledge of the signals of pain in order to provide effective pain relief.

11:45 am to 12:15 pm- Break

11:30 am to 1:00 pm – Registration for the Buddy Walk® on Washington

12:00 pm to 1:00 pm – Self-Advocates Speak Out Lunch and Panel Discussion – an exclusive event for self-advocates age 18 and older hosted by NDSS Self-Advocate Advisory Board (SAAB)

12:15 pm to 1:15 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.

1:15 pm to 5:00 pm – Federal Advocacy Training

*Attendance is highly encouraged for those going to Capitol Hill on April 11*

*Schedule to be announced soon*

5:00 to 7:00 PM – Dinner on your own (There is a restaurant in the hotel and many others close to the hotel.)

7:00 to 9:00 PM –2018 Annual Buddy Walk® on Washington Social – Enjoy dessert, network, dance and celebrate with the winners of the Ethan Saylor Memorial Scholarship and the Blake Pyron Entrepreneurship Scholarship, which will be awarded during the social. Dress code is casual to business casual but feel free to dress up if you like! Hosted by the NDSS Self-Advocate Advisory Board (SAAB).


7:00 AM to 8:00 AM – Continental Breakfast

8:30 AM – Depart hotel for Capitol Hill – Participants may pre-purchase a one-way bus ticket for $10 per person or may take a taxi/Lyft to Capitol Hill at their own expense or take the Metro (subway train). The Ballston Metro Station is .3 miles from the Westin Hotel and the Metro train takes about 30 minutes from the Ballston Metro Station to the Capitol South Metro Station. The US Capitol is .3 miles from the Capitol South Metro Station.

9:15 AM – Group photograph at U.S. Capitol – The photo will be taken on the steps of U.S. House of Representatives, which is on the south side of the US Capitol Building. Meet on the steps on the east side of the House, facing the Library of Congress. (See star on this map for location.)

**Capitol Hill meetings scheduled by Soapbox begin at 10:00 AM**

12:00 to 1:30 PM – Champion of Change Awards Luncheon on Capitol Hill (Location: TBA) – There will be theater-style seating with box lunches. Some Congressional meetings may conflict with the lunch and these meetings take priority. Note: other lunch options on your own may be found at this link.

1:30 to 5:00 PM – Capitol Hill visits (Meetings will be scheduled for each advocate by Soapbox Consulting. We encourage participants to schedule their flights as late as possible in the day on April 11 to allow time for possible late afternoon meetings on Capitol Hill.)

**The schedule is subject to change**