Community Forum

This presentation gives an overview of home automation devices and adaptive gaming including:  how home automation and adaptive gaming can benefit individuals with disabilities; what to consider when choosing devices or gaming systems; and how to set up most common devices. Presenters will also cover their personal experiences with adaptive gaming and assistive technology and provide resources to learn more.

Adaptive Gaming

Panelist: Steven Spohn

Steven Spohn, COO of AbleGamers Charity, will discuss the various adaptive gaming systems, ways to choose gaming systems, benefits of gaming, and how to obtain gaming systems.

Steve is an award-winning author, and advocate for people with disabilities. He currently resides outside of Pittsburgh, Pennsylvania with his two cats. Steve is an avid gamer who champions for people with disabilities in the video game space as a means of defeating social isolation. When not writing or doing charity work, you can find him reading the latest sci-fi novels or cracking jokes on social media.

All Access Life

Panelist: Bradley Heaven

Bradley Heaven, co-founder of All-Access Life charity, will discuss his personal experience with assistive technology and adaptive gaming over the years.

Bradley was born with nonverbal spastic quadriplegic cerebral palsy, but he never lets it hold him back from living life to the fullest. Since Bradley is nonverbal he has his own way of communicating with his eye movements and body gestures. He also uses assistive technology to communicate and live life to the fullest.  Bradley co-founded All-Access Life charity to create a website that showcases the latest trends and movements in adaptive products, assistive technologies, adaptive apps/software, and general information. 

Home Automation

Panelist: Stephanie Vasques-Gabela

Stephanie Vasques-Gabela will give an overview of home automation devices, what to consider when choosing home automation, and how to set up most common devices.

Stephanie Vasquez-Gabela works as the Clinical and Research Coordinator at the University of Pittsburgh and UPMC-Center for Assistive Technology. Stephanie holds a BS in Mechatronics Engineering and a MS Rehabilitation Science and Technology. She is passionate about working with people with disabilities and to support in the provision of appropriate assistive technology. Her current role has provided her with experience in wheelchair standards, assistive technology evaluations, set up and training for people with disabilities who need computer access for college, post-secondary training and vocational purposes. She also has experience in Smart Home Technology and is currently working at the Center for Assistive Technology to expand this area.

---

The AACPDM Advocacy Committee is pleased to develop this panel in coordination with the Community Council.  The goal of this timely panel is to inform and empower parents and people with lived experience to craft a focused message and effectively advocate for their healthcare and education.  Join this panel to learn more!

Coming November 1, 2021

Speakers:

Cynthia Frisina, BA, MA, CARSS - “Getting Your Message Across - How to advocate for your child”

Cynthia Frisina is a global expert on disability advocacy, family education and partnerships.  As a successful marketing and nonprofit professional, Cynthia has committed her career to improving the lives of others through education and strategic outreach. Cynthia spent more than 20 years as an award-winning marketing professional for Fortune 100 brands and healthcare companies, before dedicating her focus on nonprofit organizations serving people with cerebral palsy and other disabilities. Cynthia’s youngest daughter was diagnosed with Cerebral Palsy she launched Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy in 2004, and grew it into one of the largest parent-led foundations of its kind – bridging the gap between education, advocacy and parent physician partnerships for families with a presence on three continents. Cynthia led the establishment of National Cerebral Palsy Awareness Day in the United States and has provided Congressional testimony and transformational input regarding the need for federal Cerebral Palsy research over the past decade.

Spencer Bowersox – “PADDLE: A tool for advocating”

Spencer Bowersox is a social worker with experience working with children with disabilities. He has worked as the social worker for the Technology Assisted Children’s Home Program which assisted and supported individuals with complex medical conditions; as well as helping their families navigate psychosocial and medical concerns while promoting support and empowerment. Recently, he has transitioned to the Neonatal Intensive Care Unit within Children’s Hospital to support and ensure caregivers and parents are provided dignity and respect during a difficult and likely unanticipated event related to the birth of their child.

Alison Morse “Effective Parent Advocacy in Education”

Alison Morse is the Senior Manager – Advocacy and Family Engagement for Easter Seals Ontario. In this position, Alison is responsible for government relations and advocacy. Alison manages the Easter Seals Special Education Advisory Committee (SEAC) program and has been a SEAC member since 1992. She participates in government consultations and prepares position papers. Most recently Alison is a member of the Education Accessibility Standards Development Committee for Kindergarten to Grade 12.  Alison is also the lead for enhancing child and family support by providing information, engaging families in workshops, and seeking child and family advice for the organization. Alison has been providing parent workshops for almost 30 years and has developed a variety of articles to support families on the Easter Seals Kids at School Website. She is also the parent of a young woman who has cerebral palsy.

---

Living with a disability or caring for someone with a disability brings with it challenges often associated with physical, medical and societal hurdles, but we rarely discuss the mental health impacts.

It is so incredibly important for people to know they are not alone, that others live with mental health concerns directly related to their disability. Or that as a caregiver, it is ok to not be ok as you navigate incredibly difficult paths.

We have brought together a panel of individuals who will tell their story, share their experiences, and discuss the strategies they have used over the years to manage their mental health.

Panelists:

Brenda Agnew

Brenda is a mom to 2 teens, and her younger son has Cerebral Palsy. She has been an outspoken advocate for mental health supports and awareness and has herself struggled with depression and anxiety since the diagnosis of her son Maclain. Brenda is also the Chair of the AACPDM Community Council, and a member of other patient and parent advisory committees.

Heather Hancock

Heather is a writer and an editor; an advocate for research & care for adults with cerebral palsy; an advocate for childhood sexual assault, trauma, and other abuse survivors; and an advocate for mental health. She lives in Maple Creek, Saskatchewan, Canada with her husband.

April Hepler

In addition to being the founder and executive director of Adagio House, a nonprofit agency focused on supporting caregivers and people with disabilities, April is a licensed professional counselor and a "Happy For No Reason" certified trainer.  She parents children with disabilities in a blended family and loves to spend time in nature.  To learn more about April or Adagio House, please visit their website at www.adagiohouse.org<

Meredith Shawver

Meredith was born and raised in Texas, and is the youngest of three girls, and I have ten cousins…all girls! She is a graduate of Abilene Christian University with a degree in Nursing and have a passion for mission work and Zambia Africa. She is twenty-four years old and currently a Registered Nurse on the Women’s floor at Medical City Arlington and also a former patient of the president of AACPDM Dr. Mauricio Delgado. Meredith says it is a joy to be able to give back to fellow children and families who deal with similar joys and hardships that CP brings. She was born at twenty-five and a half weeks and weighed two pounds and spent eighty days in the NICU. She is overcoming the challenges of spastic dystonia and mild cerebral palsy, primarily affecting her right leg. Meredith also says she is blessed beyond measure!

---

Join the panel as they discuss the importance of exercise and activity for children with CP and other developmental disabilities. Experts, families and people will lived experience will provide examples of integration and adaptation in the community, share lived-experience with accessing and navigating community resources and activities.

Speakers:

Zachary Boychuck, Noelle Moreau, Keiko Shikako-Thomas, Marybeth Grant-Beuttler, Theresa Sukal-Moulton, Aura Shoval, Galvin Colquitt, Kathleen Friel, Eduardo Patino & Diana Rosero

Moderator:

Zachary Boychuck, OT, PhD – Chair, AACPDM Adapted Sports & Recreation Committee.

Dr. Boychuck is an Occupational Therapist, a Postdoctoral Fellow at CanChild & the Department of Pediatrics at McMaster University, and is Chair of the AACPDM’s Adapted Sports & Recreation Committee. His doctoral research focused on enhancing early-identification of children with CP, and used mixed-methods and an integrated knowledge translation approach to create educational tools for primary-care practitioners and parents to increase awareness of the early-motor signs of CP that should prompt referral for diagnostic assessment, as well as simultaneous referral for rehabilitation services, for children suspected of having CP.

Panelists:

Join panelists as they discuss the importance of exercise and activity for children with CP and other developmental disabilities, provide examples of integration and adaptation in the community, share lived-experience with accessing and navigating community resources and activities.

Noelle Moreau, PT, PhD - “Exercise and strength training benefits for people with CP”

Dr. Moreau is a Physical Therapist, and an Associate Professor in the Department of Physical Therapy at Louisiana State University Health Sciences Center. Her area of research involves the investigation of the neuromuscular mechanisms underlying abnormal force production in children and adolescents with cerebral palsy and the development of effective rehabilitation strategies to address these impairments and improve activity and participation. She will present on the benefits of exercise and strength training for people with CP.

Theofani A. Bania, PT, PhD

Dr. Bania is a Physical Therapist, and an Assistant Professor in the Department of Physiotherapy in the School of Health Rehabilitation Sciences at the University of Patras. Her research focuses on pediatric neurorehabilitation, pediatric physiotherapy, and development and assessment of outcomes measures. She will present on evidence-based exercise guidelines for people with CP.

Keiko Shikako-Thomas, PhD, OT, Canada Research Chair in Childhood Disability: Participation and Knowledge Translation – “Connecting Children and Youth with Disabilities to Leisure: The Jooay App”

Dr. Shikako-Thomas is an Occupational Therapist, Assistant Professor in the School of Physical and Occupational Therapy at McGill University, and the Canada Research Chair in Childhood Disability: Participation and Knowledge Translation. Her research focuses on the promotion of healthy living and the human rights of children with disabilities & knowledge translation science and practice. Her research program adopts a participatory approach to engage different stakeholders, including policymakers, children and their families in finding solutions to change the environment, informing policymaking and promoting the participation of children with disabilities in different life roles and activities. She will present on Jooay (www.jooay.com), an app designed to connect children and youth with disabilities to leisure and recreation opportunities in their communities.

Marybeth Grant-Beuttler, PT, PhD, “Creating a ballet program for kids and simultaneously for families”

Dr. Grant-Beuttler is a Physical Therapist, and an Associate Professor in the Department of Physical Therapy at the Crean School of Health & Behavioral Sciences at Chapman University. Her research focuses on motor development and movement analysis in infants, children, and adolescents, with specific expertise in early development, developmental coordination disorder, and idiopathic toe walking. She will present on her experiences with creating a ballet program for kids and simultaneously for families.

Theresa Sukal-Moulton, PT, DPT, PhD and one parent - “Frame running”

Dr. Sukal-Moulton is a Physical therapist, and an Assistant Professor in the Physical Therapy and Human Movement Sciences Department at Northwestern University. Her research focuses on the underlying mechanisms of movement differences seen at different stages of the lifespan for individuals with early brain injuries, in particular cerebral palsy. She has been involved in several studies that have evaluated the loss of independent joint control in infants, children and adolescents using remote, lab based, and community based methods of data collection. She will present on her work with Frame Running.

Aura Shoval, MD – “Wheelchair dancing: Enabling and promoting participation in a non-adapted community program”

Dr. Shoval is a Pediatric Rehabilitation Physician at Children's Specialized Hospital in New Jersey. Her clinical interests include spasticity management, CP, brain injury, drooling, sports medicine, and dance/performing arts medicine. She will present on enabling and promoting participation in a non-adapted community programs, drawing upon her experience with Wheelchair Dancing.

Galvin Colquitt, EdD – “Fostering participation in physical education”

Dr. Colquitt is a Professor of Health and Physical Education at Georgia Southern University. His research interests include disability health, school/community-based physical activity interventions, and CP. He has ongoing projects related to (i) power training for young people in CP, and (ii) neuromuscular mechanisms of contracture related to people with CP. He will present on how to foster participation in physical education for children and youth with special needs.

Kathleen Friel, PhD – “Earning a black belt in taekwondo”

Dr. Friel is an Associate Professor of Neuroscience at the Brain and Mind Research Institute at Weill Cornell Medicine, and the Lab Director of the Clinical Laboratory for Early Brain Injury Recovery at the Burke Neurological Institute. She also has CP. Her research focuses on the importance of motor activity in neurorehabilitation; she engages people living with CP in intensive hand therapies, using intensive play-based therapy or robotic therapy; uses non-invasive brain stimulation to study how intensive hand therapy changes motor circuits in the brain; and also studies factors that contribute to motor impairments, such as sensory impairment and visual neglect. She will present on her experience as taekwondo enthusiast and with earning a black belt.

Eduardo Patino & Diana Rosero  “Eduardo’s Story”.

They discuss the importance of exercise and activity for children with CP and other developmental disabilities, provide examples of integration and adaptation in the community, share lived-experience with accessing and navigating community resources and activities.