Family Voices 2017 Activity Highlights

Family Voices is a family-led, nonprofit organization, working to keep families at the center of children’s health care. Since forming Family Voices in 1992, families of children and youth with special health care needs have built a highly respected diverse national grassroots network of family and youth leaders focused on improving healthcare services and policies. The network of Family Voices State Affiliate Organizations (SAOs) and Family-to-Family Health Information Centers (F2Fs) in every state and DC provide information, assistance, and support to other families of children and youth with a range of special health care needs and/or disabilities and work closely with professionals to improve care. Their work and accomplishments are varied and extensive and can be found here.


Educational Inclusion Survey through Walsh University

This survey asks questions related to special education from parents’ point of view. The purpose of this research project is to help to better serve families who have children with special needs in school. The end goal is to inform schools about the needs/wants of students and families in the areas of communication, access to information about special education, thoughts on inclusion, and implementation of parent support groups/educational seminars if wanted/needed.

Should you choose to participate, you may opt to be entered into a raffle for a $50 Amazon gift card (two gift cards will be sent out in May, when the study is complete). When you click the link below you will be taken to an introduction that explains the study in more depth and requests your consent to participate. Thank you for your help with this important project.

Take the survey here.

Ohio F2F Planning, We need your input

The Ohio Family to Family Heath Information Center (Ohio F2F: needs your help!

If you are a professional who serves or if you are a family member of someone between 0-26 years of age who has a special healthcare need, a (complex) medical condition or (developmental) disability, then we would like to hear from you!  

As the Ohio F2F team is planning for the next four years of our work in Ohio to support families in navigating the healthcare and health insurance systems to achieve optimal care for children with healthcare needs, we would like to get your input on what you think is missing in supporting families of children and youth with special healthcare needs, complex medical conditions and developmental disabilities to receive optimal care and live healthy, safe, happy and productive lives in the community.

The survey should not take more than 10-15 minutes. You will answer all questions anonymously, which means that no one will know that you completed the survey and that no one will know what your specific answers were. All questions should be answered in relationship to the child/youth with special health care needs/ complex medical needs/developmental disabilities.

Take the survey here

The survey will close on Friday, December 29, 2017.

Thank you so much! We greatly appreciate your input!


Medicaid Provides Crucial Services for People with Disabilities and Their Families

More than 1 in 3 adults under age 65 enrolled in Medicaid have a disability. Medicaid provides essential medical care and supportive services that help many of these individuals remain in their homes and communities.

Radically changing Medicaid’s structure to a block grant or per capita cap, as in recent Republican proposals to repeal the Affordable Care Act, would threaten the essential services that people with disabilities rely on to maintain their health and independence.

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Brown, Northeast Ohio Parent, Doctor Call on Congress to Extend Children’s Health Insurance Program

Senator has Led Efforts to Extend Funding for Program that Insures 209,000 Ohio Children

Tuesday, September 5, 2017

CLEVELAND, OH —Today, U.S. Sen. Sherrod Brown (D-OH) joined a northeast Ohio parent and Dr. Edward Barksdale, Chief of Pediatric Surgery at University Hospitals Rainbow Babies and Children’s Hospital, to call on Congress to reinvest in the Children’s Health Insurance Program (CHIP), known as Healthy Start in Ohio, as funding is set to expire at the end of this month. Brown is a member of the Senate Finance Committee, which has jurisdiction over CHIP.

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Cleveland Clinic and CareSource extend contract through end of November

August 25, 2017

Days before their contract expired, the Cleveland Clinic and CareSource signed an agreement to extend their deal through the end of November. (Thomas Ondrey/The Plain Dealer)(Thomas Ondrey)



By Ginger Christ, The Plain Dealer,

CLEVELAND, Ohio – The Cleveland Clinic and CareSource agreed to extend their Medicaid contract through Nov. 30.

The decision comes two months after the companies warned their contract together would expire Aug. 31, which would have left thousands of CareSource members without access to the Clinic.

Steve Ringel, president of the Ohio market for CareSource, said the two companies have been constantly trying to come to terms.

Read the full story here.


Cincinnati-area Managed Care Forums

Ohio Medicaid and its Managed Care Plans provide forums for families and professionals around the state to learn more about Managed Care and there will be opportunities to ask questions of Managed Care Reps.

September 12, 2017, 4:30 pm Professionals forum, 6:30 pm Public/Families forum
Cincinnati Children’s Hospital Medical Center – Liberty Campus, 7777 Yankee Road, Liberty Township, OH 45044
Each session will cover:
The Basics:       What is Managed Care and how can it help coordinate healthcare?
The Benefits:   Expanded health care access, coordination, and health and wellness programs
How-to Steps: How and where to sign up, including what to expect once you are enrolled
Questions:        Call toll free: 1-844-644-6323 or 513-803-3846

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More information for professionals

State of Play: Latest update on federal health reform efforts

By August 7th, 2017

After recent failed efforts to pass a health care repeal or replace bill, Congress spent much of last week re-grouping on a future healthcare strategy. While most current signals point to the likely end of a full ACA legislative repeal effort, there is pervasive recognition that there are issues that need to be urgently addressed by Congress and the Administration such as resolving the issue of funding for cost-sharing reduction (CSR) payments to issuers.

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