Collaborative Action Team (CAT) Project

Ohio’s F2F has teamed up with the Ohio Department of Health (Title V Division) to participate in a national project sponsored by Family Voices and Leadership in Family/Professional Partnerships. We are one of 5 states chosen for the project, with a goal of forming a Collaborative Action Team to encourage parents from underserved populations in Ohio to join advisory groups on local, regional and statewide levels. During the Coronavirus pandemic, our team worked together to disseminate related health information to the Somali and Hispanic communities in their primary languages. These are the two cultural groups our team chose to focus on, and we have added cultural advisors to our team representing these two populations.

Additional goals in the CAT action plan include engaging the CMH parent advisory council in Implicit Bias training, and then working to recruit, support and mentor new members of the PAC from the Somali and Hispanic communities. We hope to apply what we learn in the process to include other underserved populations in this and other decision-making groups in the future.

Ohio F2F’s Response to Current Events

In view of the most current events and the blatant as well as underlying and systemic racism that people of color experience in our country, Ohio F2F stands in support of all of our stakeholders, family members, self-advocates, children, youth and adults with disabilities, colleagues and friends to address racism, injustice and inequities. Our vision statement, as part of the UCCEDD, clearly states that we envision a future in which “all people, including children and adults living with disabilities, …, fully participate in society and live healthy, safe, self-determined and productive lives.” While our focus is on people with developmental disabilities, we acknowledge that our vision for a just future cannot be achieved in a racist world.

Our F2F is committed to working as a team to recognize and dismantle systems that support racism while actively supporting each other and the people we serve to acknowledge, honor, and appreciate differences. We are with you.

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.