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: “Overcoming Adversity in the Disability Community”
Sara Hart Weir, President & CEO – NDSS
Neil Romano, Chairman, National Council on Disability
F. Scott Fitzgerald Ballroom CDE

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
Mary Borman, Self-Advocate
F. Scott Fitzgerald Ballroom A

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
Moderator: Sara Hart Weir, President & CEO – NDSS
F. Scott Fitzgerald Ballroom C

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 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), Parent
Jamie Dolan, Information & Referral Associate – NDSS, Self-Advocate
Bobby Lanyon, President Board of Directors, Eastern Pennsylvania Down syndrome Center, Parent
Douglas Rogers, Self-Advocate
Margie Rogers, Ph.D Psychology, Sister
Thomas F. Welch, Jr., President, Rosaria Communities, Inc.
Embry Burrus, Licensed speech-language Psychologist, Sister
F. Scott Fitzgerald Ballroom B

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
F. Scott Fitzgerald Ballroom D

Person-centered planning is a way to help families, friends and caregivers work together to help an individual create a positive future for him or herself. Learn about visual planning tools that can help people clarify a vision for their future, discover resources for support, and solve problems.

Healthy Aging (HR, OAA)
Kathy Service, RN, MS, FNP-BC, 
F. Scott Fitzgerald Ballroom E

People with Down syndrome are living longer than in generations past. Learn what can be done to help people continue to be healthy as they age with Down syndrome, even with a diagnosis of Alzheimer’s disease.

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
F. Scott Fitzgerald Ballroom A

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
Michael Toobin, P.C.
F. Scott Fitzgerald Ballroom B

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, Sister

F. Scott Fitzgerald Ballroom E

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
F. Scott Fitzgerald Ballroom D

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 pm BREAK
12:00 pm – 1:00 pm
Plenary Lunch: “Aging and Down syndrome”
David EganSelf-Advocate
F. Scott Fitzgerald Ballroom CDE

This plenary session will present a self-advocate perspective on adulthood and aging.

1:00 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)
F. Scott Fitzgerald Ballroom D

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, Parent, Developer of “Joyful”
Colleen Hatcher
NDSS – Community Outreach and Engagement Manager, 
F. Scott Fitzgerald Ballroom A

Technology is becoming increasingly powerful as a tool to meet friends. Joyful is an app, currently, in development, that will instantly connect individuals with 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
F. Scott Fitzgerald Ballroom B

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
F. Scott Fitzgerald Ballroom E

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
Employer Roundtable – Employment of People with Down syndrome (OAA)
Dave Burton, Owner, Capital Candy Jar
Cameron Gibbs, Vice President, AlixPartners
Harrison VanderleeSelf-Advocate
Jessica TumanHead of People with Special Needs – Center of Excellence, Voya Financial
Brian Rodgers, NDSS Board Member
Emily Kaczmarczyk, NDSS – #DSWORKS® Program Manager
Laura Hathaway, Employment Development Director, Down Syndrome Guild of Southeast Michigan
F. Scott Fitzgerald Ballroom C

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. This 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.

You will walk away from this session armed with a brief case full of examples and strategies of major corporations and small businesses are working with NDSS to create a more inclusive workforce. With the support of community leaders, business owners, corporate partners, our NDSS #DSWORKS® Program is the most comprehensive Down syndrome employment program in the world  – focused on: 1) providing best practices to all stakeholders, 2) placing individuals with Down syndrome in internships, fellowships and permanent employment opportunities that support their own career dreams and aspirations; 3) supporting local Down syndrome affiliates from around the country to create meaningful employment opportunities and local partnerships, and 4) advocating for comprehensive employment reforms at the federal and state levels of government through its NDSS #LawSyndrome Campaign.

This panel discussion will include conversations from employers, human resource professionals and advocacy and policy perspectives that shape the landscape for employment for individuals with Down syndrome and other intellectual disabilities.

Self-Advocates Speaking Out (CI) F. Scott Fitzgerald Ballroom B

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, 
F. Scott Fitzgerald Ballroom E

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
F. Scott Fitzgerald Ballroom D

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. Sister
Kathy Srisc-Stoehr, Caregiver Advocate, member of NTG, Sister
Margie Rogers, Ph.D Psychology, Sister
Embry Burrus, Licensed speech-language Psychologist, Sister
Nyla Jones, Licensed speech-language Psychologist, Sister
F. Scott Fitzgerald Ballroom 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 special roles.

3:45 pm – 4:15 pm BREAK
4:00 pm – 5:00 pm
Day One Closing Plenary: “Minimize the Mountain”
Rob Snow, Motivational Speaker, Parent
F. Scott Fitzgerald Ballroom CDE

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 F. Scott Fitzgerald Ballroom CDE

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.
F. Scott Fitzgerald Ballroom CDE

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
F. Scott Fitzgerald Ballroom D

You are uniquely yourself! You are not 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”
F. Scott Fitzgerald Ballroom A

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
F. Scott Fitzgerald Ballroom E

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, Brother
F. Scott Fitzgerald Ballroom B

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
F. Scott Fitzgerald Ballroom D

This interactive session, designed for self-advocates will include discussion focused on the skills necessary to navigate different types of relationships from casual friendships through more intimate relationships.

ABLE (Achieving a Better Life)
Eric Ochmanek, Deputy Chief of Staff – Office of the Ohio Treasurer of State
Doug Jackson, Deputy Director, STABLE Account – Office of the Ohio Treasurer of State
Natasha Hickman, Chief of Staff, Senator Richard Burr
F. Scott Fitzgerald Ballroom A

Following the passage of the federal Achieving a Better Life Experience (“ABLE”) Act in December 2014, the Ohio STABLE Program was the first to ABLE Plan to launch, in June 2016. ABLE Accounts allow individuals with disabilities to save and invest money (up to $15,000 a year, or more if employed) without losing eligibility for certain public benefits programs, like Medicaid or SSI.

STABLE is the largest ABLE Program with nearly $30 million in assets and approximately 6,000 accounts nationwide.  STABLE also partners with and manages the ABLE programs for 11 states, including Arizona, Georgia, Kentucky, Missouri, New Hampshire, New Mexico, Oklahoma, South Carolina, Vermont, West Virginia, and Wyoming.

In 2017, the US Congress enacted the ABLE to Work Act, which now allows ABLE beneficiaries to contribute an additional $12,060 to their ABLE Accounts; and allowing families who start 529 accounts for college savings to roll the money in these accounts over to 529-A accounts.

NDSS, through the ABLE Alliance for Finance Empowerment, remains committed to the success of the ABLE program.

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.

Grassroots Advocacy (IE,CI)

Ashley Helsing, NDSS – Director of Government Relations
Nicole Patton, NDSS – Manager of Grassroots Advocacy
Adrian Forsythe, NDSS – Advocacy Programs Assistant
Kayla Mckeon, NDSS – Manager of Grassroots Advocacy
Kate Johnson, Autism Speaks – Associate Director, Grassroots Advocacy
Misty Holmes, Down syndrome Ambassador

F. Scott Fitzgerald Ballroom B

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
F. Scott Fitzgerald Ballroom E

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) F. Scott Fitzgerald 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.

**Please note that this schedule is subject to change.