Rubinstein-Taybi Syndrome (RTS) Event at the Newport Aquarium

 

On the last weekend in January, the UCCEDD at Cincinnati Children’s hosted an RTS booklet release party at the Newport Aquarium, drawing over 100 guests from as far as Michigan, Illinois and Tennessee as well as regional guests from Indiana, Kentucky and Ohio! The booklet, “Understanding Rubinstein-Taybi Syndrome: A Guide for Families and Professionals” was developed to help family members of children with Rubinstein-Taybi Syndrome better explain their child’s condition to healthcare providers, teachers and family members. The booklet and event could not have happened with the generous support of the Dr. Jack Rubinstein Foundation at Cincinnati Children’s.

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Supporting Families with Nursing Denials

Our hope is to advocate for nursing solutions and policy changes that improve the health and safety of children and youth with special health care needs.

In 2019 OHF2F will:

  • Lead the Coalition for Waiver Nursing meetings and networking
  • Continue conversations with DODD and Medicaid leadership and educate them on the impact of their actions, work on collaborations, and present potential solutions.
  • Meet with and educate new Ohio legislators, policymakers, and leadership of DODD and Medicaid on this nursing care issue once new agency leadership is in place in January 2019.
  • Add information and resources on the Ohio F2F website for families impacted by the new rules on Nursing and Nursing Delegation

We urge families to contact us to share your stories and to gain support by phone at 844-644-6323 or by email at ohiof2f@cchmc.org. Or, Disability Rights Ohio intake department at (614) 466-7264 or (800) 282-9181.

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Ohio Department of Health seeking stakeholder input

The Health Policy Institute of Ohio (HPIO) has been commissioned by the Ohio Department of Health to gather stakeholder input for the Maternal and Child Health (MCH) and Maternal, Infant and Early Childhood Home Visiting (MIECHV) five-year assessments.

You are invited to complete an online survey (5-20 minutes depending on how many population groups you select) to identify the greatest needs for one or more of the following five population domains in Ohio:

  • Maternal/women’s health
  • Perinatal/infant health
  • Child health
  • Children with special healthcare needs
  • Adolescent/young adult health

The survey will remain open through Tuesday, December 4th. Thank you for your input.

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Are you a good listener? Do you care about the wellbeing of people with Developmental Disabilities?

The Ohio State University Nisonger Center is looking for individuals with developmental disabilities and their family members to be NCI interviewers. Interviewers will conduct face-to-face conversations with Ohioans with disabilities for the National Core Indicators (NCI) Adult in Person survey (www.nationalcoreindicators.org). More information

To apply online go to: https://www.surveymonkey.com/r/NCIOhioapplication

If you have any questions please contact Anna Sigman at 1-888-685-0984 or Annamarie.Sigman@osumc.edu

Caregiver Perspectives on Transitions Project, Seeking Feedback

Are you a parent or caregiver of an individual age 12-30 years living with a complex neurologic condition who is not expected to live fully independently in adulthood?

CNF’s Caregiver Perspectives on Transitions Project is interested in your experiences with different aspects of transition to adulthood for children/young adults living with complex neurologic conditions.

Through online focus groups (conducted earlier this year) and a survey (available now until October 8), we are exploring and highlighting medical transitions, as well as transitions related to community-based supports, residential services, and social/recreational supports.

Learn more about the survey here

Registration is now open for the 2018 Candidate Forum on Disability Issues!!

The Ohio Candidate Forum on Disability Issues will provide a format for the candidates for Ohio Governor and U.S. Senate to inform the disability community about their positions on disability-related issues/policy. Engagement with our elected officials about disability-related issues is important. It impacts policy matters affecting approximately two million Ohioans with disabilities, at least 13% of our state’s population.

When: Thursday, July 26, 2018, 12:30 – 4:30 p.m.

Location: Ohio State University Fawcett Event Center, 2400 Olentangy River Rd., Columbus, OH 43210

Moderator: Mr. Alan Johnson, (Retired) Columbus Dispatch Statehouse Reporter

Keynote: John D. Kemp, Esq., Life-long advocate and co-author of ADA.

The Forum is free but you must  register here

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SURVEY PARTICIPANTS NEEDED – getting and using health insurance and health care services

The NIDILRR-funded Collaborative on Health Reform and Independent Living (CHRIL) is looking for adults aged 18-62 with disabilities to complete an online survey about getting and using health insurance and health care services – the National Survey on Health Reform & Disability.

To take the survey go to:  http://bit.ly/disabilityhealth

Why? We want to know how the Affordable Care Act (ACA) is affecting your life. If you have private insurance, insurance from an employer, Medicaid, Medicare, or no insurance please take the survey.

Who? Adults ages 18 to 62 with any type of disability, chronic health condition or mental illness.

How? The survey should take about 20 minutes to complete and your responses are anonymous.

During the week of May 27th – June 2nd the last of 2 drawings to win a $100 gift card will be held. The online survey is fully accessible for mobile devices and screenreaders, but if you prefer to take the survey over the phone or have any questions about participating, please call toll-free 1-855-556-6328 (Voice/TTY) or email healthsurvey@ku.edu. For more information about CHRIL go to: www.chril.org