Rubinstein-Taybi Syndrome Videos

The UCCEDD is excited to announce the release of ten video modules on Rubinstein-Taybi Syndrome (RTS). Nine of the modules focus on medical subspecialty care for patients with RTS and one is dedicated to families’ experiences of living a good life with RTS in their homes, schools and communities. We hope these videos will contribute to increased understanding and optimal treatment of individuals with RTS. We appreciate the time, knowledge and expertise that these medical professionals and families put into making these videos with us.

All videos can be found here.

Individual videos and links are listed below.

Developmental Pediatrics

Genetics

Ophthalmology

Orthopedics

Gastrointestinal

Neurosurgery

Anesthesiology

Psychiatry & Behavior

Growing Older

Community & Education

Stories Needed about impact of COVID-19 on People with Disabilities

Congress is writing the next bill to respond to the needs of Americans in this crisis. In order for the needs of people with disabilities and their families to be addressed in the next bill, members need to hear about the real impacts. Often, a short personal story is helpful for them. Below are tips and tools to share your story.

Important to include:

  • How services and supports have been impacted by social distancing and how this impacts you
    • Examples:
      • Not being able to go to school, work, community activities, day program
      • Not being able to have in-home or community support (Direct Support Professionals, aides, personal assistants, nurses)
      • Medical and other appointments being canceled

What to send in a story:

  • A picture of you at home; members of Congress need to SEE all of us
  • Story template
    • My name is __________________ and I am _______(a person with disability, family member, friend ).  I am from _______(town and state). The COVID-19 emergency has ___________ (stopped services – explain which).  I am worried about ____________ (explain what the impact is). I know you are working on the fourth relief package for COVID-19. I want to learn more about how you are going to help people with disabilities in this package.  Thank you very much for your time.
  • Example: (include photo of yourself)

My name is Liz Weintraub and I am a person with an intellectual and developmental disability. I am from Rockville, MD. The COVID-19 emergency has me working from home. I am worried about getting help from staff coming into my home while “stay home, saves lives.”

I need information about COVID-19 to be in plain language as its hard for me to understand and feel safe during these hard times if information is not accessible. I know you are working on the 4th relief package for COIVD-19. I want to learn more about how you are going to help people with disabilities in this package.  Thank you very much for your time.

How to send a story:

  • AUCD is happy to compile stories and send them to your members of Congress and to Congressional leaders. If you want us to send your story simply email it to rrodgers@aucd.org.
  • If you want to send your story directly to your members of Congress, the best way right now is via email. If you need help locating the right email addresses for your members please email rrodgers@aucd.org.

COVID-19 Resources Page for People with Disabilities

Project REDD (Research and Education on Disability and Disaster) has put together a list of resources for people with disabilities, related to Coronavirus, and we have added some that we think are helpful. Find more here.

We will continue to add resources as new ones become available.

New Resource: Centers for Independent Living and Parenting with a Disability

Centers for Independent Living (CILs) can be powerful allies for parents and prospective parents with disabilities and are uniquely suited to participate and lead advocacy efforts and provide appropriate services. NCIL’s Parenting Task Force created a one-page resource to assist CILs in understanding how they can support disabled parents through systems advocacy and other CIL core services.

If you are interested in joining the Parenting Task Force, contact Kimberly Tissot at ktissot@able-sc.org for more information.

Policy Paper, “Fostering Disability Advocates: A Framework for Training Future Leaders Through Interprofessional Education” Published

Stephanie Weber, Jennifer Smith, Kara Ayers and Jane Gerhardt collaborated on a policy paper titled, “Fostering Disability Advocates: A Framework for Training Future Leaders Through Interprofessional Education. This paper was recently published and can be found here, https://psycnet.apa.org/fulltext/2019-44724-001.html

This article describes the curriculum of an interprofessional training program tasked with teaching policy and advocacy knowledge and skills specific to the underserved population of individuals with developmental disabilities. The program, guided by the Maternal and Child Health Bureau’s Leadership Competencies, emphasizes integrating professionals in health disciplines, including psychology, together with individuals with disabilities and their family members for shared learning experiences. The article discusses the importance of incorporating advocacy training into preparation programs for future psychologists.