Conference Schedule

North Carolina Down Syndrome Conference

Saturday, April 22,2023



8:30 – 9:30 Registration and Breakfast
9:30 – 10:45 Welcome and Keynote
10:45 – 11:00 Break
11:00 – 12:15 Breakout Session 1
12:15 – 1:30 Lunch
1:30 – 2:45 Breakout Session 2
2:45 – 3:00 Break
3:00 – 4:15 Breakout Session 3
4:15 – 4:30 Door Prizes/Certificate of Completion

*Schedule and Content Subject to Change

Welcome and Keynote Session

A Life of My Own
A Life of My Own presented by:  Austin Underwood and Jan Underwood

Austin Underwood has Down syndrome. He also had a dream of being a chef, but it wasn’t an easy journey. After a tireless search for a vocational school that would accommodate Austin’s needs, he was able to learn the skills to become a certified prep chef. Since then, he has successfully held a variety of positions in the restaurant industry. With help from his family (aka his Mom, Jan), Austin’s Underdawgs launched in April 2016 selling “Dawgs” – hot dogs – which became an overnight success! Now six years later and a pandemic, Austin has sold more than 50,000 Underdawgs from his 32-foot Dawgmobile. Austin wants to show people that with a little support and training, anyone can grow to be a successful member of their community. Jan and Austin are committed to developing opportunities for individuals with intellectual differences. The story they share shows how at age 44, Austin is living proof of the power of living inclusively and having meaningful employment in the community.

Austin Underwood 
Austin Underwood – Age 44
Austin is an adult living independently with Down Syndrome in Fort Worth, Texas. Austin owns and operates his own business, Austin’s Underdawgs, a food truck hot dawg caterer, serving the Fort Worth-Dallas Metroplex since April, 2016.

Austin Underwood exemplifies the height of advocacy by pursuing his dreams, seeking people around him to support his efforts and being a role model for those who wish to achieve success. As one of the first and oldest person with Down Syndrome to own their own and operate their own business, Austin shows us all how far one can go if opportunity is available. Not only does Austin manage his business, he also works as a Host for an Italian restaurant located near his home.

An opportunity to meet Austin inspires most people in the community. Austin has the ability to encourage others to work hard and be independent, something he has done for the past 22 years. Austin’s presence in the community speaks volumes as he lives, shops and speaks in his community not only in his business but as an advocate and a good neighbor. Austin’s business, Austin’s Underdawgs, engages in employment opportunities for others and earned him the Lex Frieden Entrepreneur of the Year Award from the Governor’s office in 2018. Austin has attended the National Down Syndrome Buddy Walk in NYC for the past two years, along with serving at the first C21 Dinner in Washington DC while lobbying for changes in employment and wage laws for adults with disabilities. Austin’s photo has been on display in Time Square on the jumbotron during the Buddy Walk festivities and inspires the next generation of young families with members who have Down Syndrome.

Jan Underwood 
Jan Underwood – Age 71
Jan is a married Mother of 3 adult children and spouse to Joe Underwood, living in Fort Worth, Texas. Jan is a retired business owner and currently serves as Director of The Each and Everyone Foundation, a non-profit created for the purpose of assisting with vocational training and opportunities for adults with intellectual differences.

Jan Underwood has devoted her life to helping those in the community whether it was seeking inclusion for her son in public schools, a summer camp or after school care, Jan has never shied away from a challenge. Continuing to advocate for employment for those in the IDD community, Jan is creating a unique vocational on-the-job training setting through her non-profit and family trust for those with IDD. The setting includes a program with over 30 different job skill sets used as on-the-job training for those who wish to achieve employment within their own community. The Mingus Job Accelerator is open in for both Daily Training and Residential Training opportunities.

Jan tends to put her money where her mouth is, so to speak. If a program was needed for Austin when he was young, Jan would develop and gain support for the program, then secure funding and spin it off to the more suitable agency to continue. Jan, as President of the ARC of Greater Tarrant County, helped to create collaborations with both Camp Fire and YMCA to accept, include and provide support for kids with differences in their camp programs.

Jan began battling an archaic educational system when Austin was only 3 years old, in 1981. The journey took her all the way through his public school years and on to higher education, then employment needs. When Jan tackles the system, it is never solely about securing opportunities for Austin, but seeking a service that impacts as many people as possible. The Mingus Job Accelerator is her latest venture and has the ability to train and seek employment for adults with IDD. Jan is creating a model that will hopefully be used in other areas across the United States.

Breakout Session One

But I'm Not A Scientist! Navigating research opportunities for your family
Presenters: Kate O’Neill and Aisha Vanderhorst

O’Neill Not a Scientist

Presentation Description: Have you seen ads for Down syndrome research studies, but aren’t sure what makes a good study, or can’t figure out what might be involved? This presentation will help self-advocates and caregivers get to the Why, How, and When they should consider participating in Down Syndrome research. Through interactive activities and the exploration of tools and checklists, we’ll de-mystify research participation and help caregivers and self-advocates understand the vital importance of Down syndrome research. Attendees will learn strategies to: find research opportunities that are vetted, safe, and ethical, and help them determine what kind of research will suit their family’s culture, availability, and lifestyle.

Presenter Biography:  Kate O’Neill has been working in human services, and specifically with I/DD communities, for more than 20 years. As Vice President of Marketing and Community Engagement at LuMind IDSC, she leads projects to build bridges of communication and understanding between the Down syndrome community and the research community. Kate honed her training and presentation skills in previous roles at Autism Speaks and the Massachusetts Association of Developmental Disabilities Providers. She is a graduate of Saint Michael’s College in Vermont.

Aisha Vanderhorst is the Senior Project Manager of Clinical Operations at LuMind IDSC, a role that gives her the opportunity to work closely with the Down Syndrome Clinical Trials Network sites, researchers, and families. Previously, she was the Program Coordinator for the Department of Infectious Diseases at South Carolina’s only comprehensive academic health science center. Prior to her time in Infectious Disease research, Aisha spent several years as a Program Coordinator for the Department of Gastroenterology at the Medical University of South Carolina, with a focus in Crohn’s and IBD research. Aisha earned her MBA at Southern New Hampshire University, and her MS in Clinical Research at the Medical University of South Carolina.

Good Sleep Practices for Individuals with Down Syndrome
Presenter: Katie Frank, PhD OTL/R

Frank Sleep

Presentation Description: Getting good sleep is an important part of being and staying healthy. This presentation will cover conditions and issues that can lead to sleep disturbances. Both medicinal and non-medicinal ways to address sleep disturbances will be described. The importance of sleep as well as practical steps you can take to promote good sleep will be discussed. Resources will be shared.

Presenter Biography: Dr. Frank has worked as an occupational therapist at the Adult Down Syndrome Center since 2016 and in the field of occupational therapy since 2001. She also serves as the president of the Down Syndrome Medical Interest Group-USA. Dr. Frank earned her degree in occupational therapy from Saint Louis University and her PhD in Disability Studies from the University of Illinois at Chicago. Most of her work has been with individuals with Down syndrome of all ages. Dr. Frank’s experience includes treatment and evaluation as well as facilitating groups for people with Down syndrome, conducting trainings for staff, families, and caregivers, and offering a variety of other educational opportunities across the Globe. Her research has been published in peer-reviewed journals. 

Supporting families and healthcare providers to provide quality care to persons with Down Syndrome across the lifespan
Presenters: Karen Luken and Cheri Howell

Luken Project ECHO

Presentation Description: Do you worry about who will treat your child with Down syndrome as they mature? In this session Karen Luken and Cheri Howell will discuss how a person and family-centered medical home contributes to good health and quality of life for the individual and family. They will share best practice resources focused on preparing for medical appointments, adult healthcare issues and helping primary care providers and practices care for adults with Down Syndrome. They will describe how the ECHO model can provide education to healthcare providers and families and give examples of North Carolina ECHO programs.

3 key takeaways
Resources for families that support access and continuity of healthcare
Resources that assist primary care providers to care for adults with Down Syndrome
Opportunities for collaboration and education that support the mission of NCDSA

Presenter Biography:  Karen Luken, MSRA, is a disability and health consultant with 40+ years of experience in health care services, teaching and research. Her passion is promoting policies, practices and programs that advance integrated, person and family centered care for people with disabilities and families. She is fortunate to have worked with and learned from many partners, including The Arc of NC, Autism Society of NC, Community Bridges Consulting Group, NC AHEC, Vaya Health, NC Division of Public Health, and Duke University School of Medicine. Her interests include integrated care, Medicaid managed care, family and peer support, cancer screenings for women with DD, access to dental services for persons with DD, health promotion for persons with disability, accessible environments and inclusive community services. Karen received a B.S in therapeutic recreation from the University of Illinois-Urbana, an M.S. degree in Recreation and Leisure Studies and certificate in public health from UNC-CH.

Cheri Howell is Project Manager with the IDD Medical Health Home Initiative, a joint program of the Autism Society of NC and The Arc of NC with funding from NC DHHS and Healthy Blue. Cheri has over 20 years of experience in various roles at provider agencies serving adults and teens with disabilities with a primary focus in employment. She has also worked as a surveyor for the Commission on Accreditation of Rehabilitation Facilities. Cheri received a B.S. in Psychology from Purdue University and a M.S. in Rehabilitation Counseling and Vocational Evaluation from East Carolina University.
Planning for Two Lifetimes
Presenter: Andrew Spafford, ChFC, ChSNC

Spaffard Planning for Two Lifetimes

Presentation Description: We invite you to an interactive, exciting experience to learn more about Special Needs Planning including Special Needs Trusts, ABLE Accounts, Guardianship, Government Benefits, Tax Implications, Future Caregiving and more!

In this session, you will learn about what is needed in assembling a plan for your future and the future of your loved one with Down Syndrome. From this session you will have the following takeaways:

  1. What is special needs planning
  2. What is a special needs trust and an ABLE Account
  3. How to take action in assembling a plan

Presenter Biography: Andrew Taylor Spafford ChFC, ChSNC, is Special Needs Planner on the team at A Special Needs Plan; a national special needs planning firm designed to serve families who have a loved one with a disability.  He joined the team in 2010 and quickly became enthralled with helping families find clarity and discover peace surrounding planning for two lifetimes.  Andrew quickly moved through the ranks of the organization now serving as one of their premier Chartered Special Needs Consultants and planners.  He currently serves as the President for the Down Syndrome Association of Greater Charlotte and as a board member for a day support group called the Next Step Clubhouse. Andrew and his wife Melissa live in Charlotte, NC and have two young boys.


Catered Lunch
An opportunity to meet people from across the state. Make new friends and catch up with people you have not seen in a while.

Breakout Session Two

Sounds like a plan! Steps to improve hearing and communication outcomes for individuals with Down syndrome across the lifespan
Presenter: Heather Porter, PhD, CCC-A

Porter Sounds Like a Plan

Presentation Description: Hearing loss impacts developmental, educational, and vocational outcomes, yet it is often overlooked and undermanaged in individuals living with Down syndrome. This is of critical importance considering that up to 80% of individuals with Down syndrome have hearing loss at some point in their lives. This session includes evidence from federally funded research dedicated to improving hearing healthcare for individuals with Down syndrome across the lifespan taking place at Boys Town National Research Hospital and the University of North Carolina at Chapel Hill. Current research findings and future research opportunities will be discussed. Attendees can expect this session to improve their ability to advocate for evidence-based hearing healthcare through knowledge of 1) the perceptual consequences of hearing loss, 2) recommendations for diagnosis, intervention, and monitoring for hearing loss, and 3) common barriers to good hearing and strategies for management.

Presenter Biography: Heather Porter is a research scientist and clinical audiologist at Boys Town National Research Hospital. She completed clinical and research doctorates at Vanderbilt University, where she obtained training in leadership education in neurodevelopmental differences. Following graduation, she completed post-doctoral studies at the University of North Carolina at Chapel Hill and later became immersed in a clinical setting at Children’s Hospital Los Angeles, providing hearing assessments to children with complex medical histories and extensive developmental differences. Her current clinical and research roles inform a program of translational research to improve hearing healthcare and outcomes in individuals with Down syndrome across the lifespan. 

Is it Sensory or is it Behavior? Strategies to Support Individuals with Down Syndrome
Presenter:  Katie Frank, PhD, OTL/R

Frank Sensory Processing

Presentation Description: Has anyone ever suggested that your loved one with Down syndrome has sensory processing deficits? Can transitioning between activities or places be challenging? Are certain medical procedures difficult to complete? Sensory processing impacts all of us, but for many individuals with Down syndrome, the inability to control their sensory needs can impact their independence and community participation. This presentation will describe sensory processing and the different ways sensory processing can impact individuals with Down syndrome as they age. Practical sensory activities that can be incorporated daily as well as affordable equipment suggestions will be provided.

Presenter Biography: Dr. Frank has worked as an occupational therapist at the Adult Down Syndrome Center since 2016 and in the field of occupational therapy since 2001. She also serves as the president of the Down Syndrome Medical Interest Group-USA. Dr. Frank earned her degree in occupational therapy from Saint Louis University and her PhD in Disability Studies from the University of Illinois at Chicago. Most of her work has been with individuals with Down syndrome of all ages. Dr. Frank’s experience includes treatment and evaluation as well as facilitating groups for people with Down syndrome, conducting trainings for staff, families, and caregivers, and offering a variety of other educational opportunities across the Globe. Her research has been published in peer-reviewed journals. 

Mental Health & Down syndrome - Focusing on the Whole Person
Presenter: Michele Mattox, LCSW, LISW-CP

Mattox Mental Health and Down Syndrome

Mattox Healthy Living Checklist

Presentation Description: In this session, Michele will cover the following:

-Social and emotional struggles commonly seen in clients with Down syndrome
-Improving self care and relationship skills in the home and community
-Helpful resources to assist individuals with Down syndrome in developing social and emotional skills
-Why focusing on the whole person is necessary in treating clients with Down syndrome
-The importance of community connectedness in overall healthy living
-How relationship coaching and mental health counseling work together in treating clients with Down syndrome

Presenter Biography: Michele is a Licensed Clinical Social Worker in North and South Carolina. She founded No Limits Counseling, a private practice that was developed specifically for teens and adults with I/DD. She provides virtual mental health counseling to individuals with Down syndrome throughout NC and SC. Michele also offers relationship coaching in the form of groups through her private practice and by partnering with other disability organizations. Topics include: Relationships, boundaries, friendship, dating, and sexuality. Michele is closely connected to the Down syndrome community and spent many years volunteering at various non-profits in the Charlotte area. It was during this time that she realized the need for more mental health professionals that are familiar with and can connect with individuals with Down syndrome. Michele’s experience in the disability community over the last 20 years has given her insight into mental health and relationship struggles often experienced in individuals with Down syndrome. 

What you need to know about work and benefits
Presenter: Pablo Puente, MS, MBA, PMP, CWDP, CWIC

Puente Benefits – Espanol

Puente Benefits – English

Presentation Description: In this session, you will learn how to navigate the public benefits system. The presenter starts by providing an overview of common public benefits such as Social Security (SSI and SSDI), Medicare, Medicaid, Innovations Waiver, SNAP/Food Stamps, Housing/HUD, and other relevant benefits for the I/DD community.

You will also learn how to support individuals with I/DD when they want to work, how to help them report their earnings, and how to connect with community resources.


At the end of the session, you will better understand how to maximize wages and maintain eligibility for cash and medical benefits when possible and support individuals with I/DD by understanding how the benefits system works.


During this session, we can only answer general benefits questions. We will not be able to answer personal questions that disclose sensitive and personal information in public.

Presenter Biography:
Pablo is the Director, Special Projects at ServiceSource. He directs a team of experienced and certified benefits counselors helping individuals with disabilities to understand how the public benefits system works and how benefits can be affected by wages from employment. With 10+ years of experience working with Social Security law and public benefits, Pablo has become a reference in the benefits counseling field. Throughout his work with the NC Council on Development Disabilities, Pablo is also helping individuals with I/DD and their families learn about the benefits counseling services, resources available in the community, and how to get the best out of each unique benefit situation. Pablo holds a CWIC benefits counseling certification from Virginia Commonwealth University, a CWDP certification from the National Association of Workforce Development Professionals, a PMP certification from the Project Management Institute, and an MBA from Western Governors University.

Breakout Session Three

Co-occurring Autism in Down syndrome: Considerations for Early Development
Presenter: Elizabeth Will, Ph.D., BCBA

Will Autism

Presentation Description: In this session, you will learn about the DS-ASD co-occurrence from an early developmental perspective. In this session, Dr. Liz Will will cover the core-features of Autism Spectrum Disorder, gold-standard diagnostic methods and best-practice evaluation, and difficulties with diagnosing co-occurring ASD in Down syndrome. Dr. Will will also cover why early identification of co-occurring ASD is important but accompanied by some challenges. We will discuss the current “state of the field” given recent research findings and new efforts on the horizon. Finally, we will discuss evidence-based treatment approaches and accessing school and community-based supports in the context of co-occurring autism.

Presenter Biography: Dr. Will is a Developmental Scientist and Assistant Professor at the University of South Carolina. Dr. Will received her PhD in Developmental Science from Colorado State University and holds a M.Ed. in Psychology and Human Development from Vanderbilt University’s Peabody College. Her research focuses on characterizing lifespan developmental pathways in Down syndrome to identify risk features and improve developmental outcomes. Across her clinical work, professional training, and early career researcher, she has worked with children with Down syndrome and their families for 13 years. Dr. Will is also a board-certified behavioral interventionist which further helps her identify syndrome-specific areas of need and translate them into optimized developmental outcomes for the Down syndrome community. Her current research projects aim to understand the emergence and implications of co-occurring autism in Down syndrome across early childhood, and to characterize the developmental pathways of developmental motor difficulties in young children with Down syndrome.

Supporting Healthy Sexuality for your Loved One with Down Syndrome
Presenter: Katie Frank, PhD, OTL/R

Frank Supporting Healthy Sexuality

Presentation Description: We know that individuals with Down syndrome are social beings and want to have healthy relationships. This is a skill they need to learn as it may not be inherent. In this session, participants will learn about why it is important to teach sexuality education, what topics that should be addressed, and how to talk about them. Resources will also be shared including visual supports in addition to books and free online resources.

Presenter Biography: Dr. Frank has worked as an occupational therapist at the Adult Down Syndrome Center since 2016 and in the field of occupational therapy since 2001. She also serves as the president of the Down Syndrome Medical Interest Group-USA. Dr. Frank earned her degree in occupational therapy from Saint Louis University and her PhD in Disability Studies from the University of Illinois at Chicago. Most of her work has been with individuals with Down syndrome of all ages. Dr. Frank’s experience includes treatment and evaluation as well as facilitating groups for people with Down syndrome, conducting trainings for staff, families, and caregivers, and offering a variety of other educational opportunities across the Globe. Her research has been published in peer-reviewed journals. 

Navigating the Guardianship Process and Guardianship Alternatives in North Carolina
Presenter: Paul Yokabitus

Yokabitus Navigating Guardianship

Presentation Description: The transition from childhood to adulthood is nerve racking and confusing for most parents, but that emotion is amplified when your child has a disability.  The decision to pursue guardianship of a child with a disability is one that can be fraught with emotion and complexity. Parents often feel torn between wanting to protect their child and wanting to respect their independence and autonomy. There are many points to consider, including what alternatives may exist if you feel that guardianship may not be appropriate. During this presentation, Paul will discuss the guardianship process in North Carolina, what factors to consider before moving forward with guardianship, and the alternatives to guardianship that may be appropriate

Presenter Biography:  Paul is a talented and experienced Estate Planning Lawyer in Cary, NC who was born and raised in Grand Rapids, Michigan. The economic downturn led Paul and his wife, Alix, to the Triangle where Paul attended Campbell University School of Law and later planted his roots in the Cary community. His focus on the client-attorney relationship and the peace of mind of his clients sets Paul apart from other traditional lawyers.

Paul takes his fiduciary role very seriously. His relationship-centered philosophy emphasizes a focus on solutions rather than just documents and deliverables. He believes in focusing on the client’s goals and pain points – not a stereotypical “one-size-fits-all” method. At the initial Strategy Session, Paul sits down with prospective clients, discusses their specific family and financial concerns, educates them on how the law works in North Carolina, and works with the clients to determine how their goals can be accomplished. Armed with that information, Paul then crafts a legal strategy tailored to the client’s unique goals and circumstances.

You won’t find Paul wearing a suit or tie. He believes in being authentic, not just fitting into the “lawyer mold”. And frankly, he hates suits and ties. Khakis and rolled up sleeves are part of the daily “uniform” at the office. Come as you are and be comfortable. This isn’t court or a wedding. Contact him today if you’re looking for an Estate Planning Lawyer in Cary, NC.

When he’s not helping families and business owners, you can find Paul spending time with his wife, Alix, and his sons, Mason and Conor.