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

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.

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
Dr. Hackie Reitman

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
Charlotte Woodward
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
Jamie Dolan, Jon Anton, Paul Dolan, Lucinda Nobles
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
Mary Hogan, Leone Murphy
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
Erin Riehle
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
Elizabeth Bodien, Jane Boyle
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
Dr. George Capone
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 am 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
Stefanie Jenkins, LMSWMany 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
Jerry Hulick
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
Maja Pasovic
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 issue. 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
Kathy Srisc-Stoehr, Kathy Service, Dr. Seth Keller
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, to include identifying the individual’s personal best, the use of the NTG Early Detection Screen for Dementia (EDSD), steps to 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
Rob Snow

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.

Tuesday, April 10, 2017

7:00 am to 5:00 pm Registration

Day two of the Summit and Participants of the Buddy Walk on DC

7:00 am to 8:00 am Continental Breakfast
8:00 am to 9:00 am Opening Plenary
Different Brains: HR
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
Adel Herge
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
Connie Senior, LMSW
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.
Grass Roots 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
Margareta Lunde Martinson
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
12:15 pm to 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.