Study Seeking Parents of Kids With Medical Complexities

What’s the purpose of the study? Researchers hope to help parents of children with complex medical conditions with home care through an interactive voice technology mobile app.

Who can take part in this study? Parents of children who have been diagnosed with a complex medical condition such as (but not limited to):

• Cystic fibrosis • Encephalopathy • Chronic pulmonary disease • Cerebral palsy • Down syndrome • Diabetes

More information here

Assistance Beta Testing Decision Making Tool

The Stanford Health Literacy Lab is looking for help in beta testing a Decision Guide for Families with Special Needs. This interactive, educational Guide for Parents of Children and Youth with Special Health Care Needs, is intended to help parents make sense of back-to-school decisions. We know that most people have already had to make a decision about going back to school, but we anticipate that these decisions may change or will have to be made repeatedly, so your feedback is important. Please access the Decision Guide here.

Emergency Preparedness Resources

These resources will assist individuals with disabilities in preparing for disasters. Regional and FEMA (government) resources are also included in all three brochures.

Creating an Emergency Preparedness Plan with Your Caregiver: This resource focuses on the importance of discussing emergency planning between individuals and their caregivers. Sheltering in Place, Community Sheltering and Evacuating are all covered in this resource.

Disaster Preparedness for People with Disabilities: Impact Areas of Disasters. This resource discusses 10 areas of an individual’s life that would be affected in the event of an emergency. Information about receiving alerts and a review of Smart 911 is also included.

Creating Your Emergency Kit: This resource provides individuals with information regarding the importance of having an emergency kit. A list of items to include in a kit and a checklist of what to do to be prepared is also provided.

What to Consider for In-School vs. Online Learning for Kids with Disabilities

Parents and guardians may be faced with the difficult decision of choosing the best and safest learning environment for their child with special education and/or special healthcare needs. These two resources are created to give parents information related to rights within school for children with disabilities at this time, as well as things for them to consider when determining whether online or in school learning is the most appropriate for their child.

School Decision Making Tool

School Re-Entry Fact Sheet

Public Comment on Operating Standards for the Education of Children with Disabilities

The Ohio Department of Education (ODE) has widely shared proposed changes to the OAC (Ohio Administrative Code) and is allowing for public comment until July 31. One of the proposed changes is the Proposed Rule Change to OAC 3301-51-05 Procedural Safeguards regarding Change of Placement (found in 3301-51-05). Parental consent for change of placement, which currently is found in the OAC language in this section, is proposed to be removed. ODE has shared that the change of placement decision is an IEP team decision, and the parent is a member of the IEP team. However, clarity of the rights of a parent in this situation is important. To continue giving parents their rights that are afforded by IDEA (Individuals with Disabilities Education Act), we believe that the language should remain in the OAC.

For parents and families who are concerned about this proposed change, Disability Rights Ohio has drafted a template letter to use to share their concern.

Regardless of whether you agree or disagree with the removal of the language in this section, we encourage everyone to review all of the proposed changes and provide your public comment on the changes. All proposed changes (and instructions on where to send comments) can be found here.

The Ohio Department of Education welcomes comments and encourages everyone to participate in this process. The more voices heard, the more perspectives shared, whatever your perspective is, the better outcome for all of our children.

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