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.
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
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 firstname.lastname@example.org. For more information about CHRIL go to: www.chril.org
Check out the first edition of the Ohio Family 2 Family newsletter here
One day in kindergarten, my daughter’s positioning stroller tipped over in gym class. Since Lianna has no self defense reflexes, she hit her head on the gym floor. I was called immediately and arrived at the school in less than 10 minutes. She had a glorious goose egg on the middle of her forehead.
As a precaution, a teacher who was also a volunteer EMT thought it wouldn’t hurt to have her checked out. At that time, to be seen promptly at the local hospital, you had to arrive by ambulance. So the teacher/EMT personally called our local life squad and we were transported without lights and sirens so as not to scare Lianna or other students.
We have had a great response to our first series of Transition Bootcamp in Central Ohio. Monthly workshops on transition topics targeting families of teens and young adults have been held throughout the current school year at the Clark Hall building of Gahanna High School. This year we’ve highlighted education, employment, housing, guardianship and alternatives, healthcare, social and spiritual issues, Medicaid & waivers, and financial planning. We’ve heard speakers from Disability Rights Ohio, Opportunities for Ohioans with Disabilities, the Ohio Association of County Boards, Ohio Provider Resource Association, Franklin County Bd. Of DD, Creative Housing, Ohio Dept. of DD, Wynn-Reeth, Nationwide Children’s Hospital, The Autism Society of Central Ohio, and the Arc of Ohio. We are already using input from attendees to plan next year’s workshop series. Check out training opportunities here and across the state on our website at www.ohiof2f.org and click on “Trainings.”
Central Ohio was the site of our first full-day conference on April 13th for professionals and families with the theme of Strengthening Parent-Professional Partnerships. Speakers from children’s hospitals in Cincinnati, Dayton and Columbus presented on care coordination, shared decision making, family engagement and the Medical Home model. More than 150 attendees participated!
Ohio F2F once again participated in the Franklin County provider fair on April 18th. Over 100 waiver providers and community organizations that serve individuals with disabilities around Central Ohio were represented, and families could gather information on whatever service they need from several providers at one event, plus chat with them in person about their specific situation.
Finding Amy from Ohio Family2Family literally changed our life. Seems drastic doesn’t it? But when you have exhausted every effort you are aware of, and still haven’t gotten to the resolution, drastic is what you need. I had been attempting to resolve an insurance issue for my son, who has severe autism, for over a month. This insurance would mean services. Services would mean help. And we needed it at that the time more than ever.
No matter where I called or how often, I could not get to the bottom of it. My son needed a specific insurance, and I knew he could have it, so why couldn’t I make this happen? I was referred to Amy and in ONE phone call, I knew I wouldn’t have to worry anymore. It was amazing what comfort can come from someone simply saying “this isn’t only your problem anymore, you have me now.” Amy had the answers and handled it with grace, experience and quickness. My son very quickly got his insurance and we started receiving our in-home services we so desperately needed. Those services have been life changing.
Just knowing there is a place to call when navigating this complicated world of special needs and its many complex categories, is an absolute relief. We aren’t alone. Help really is a phone call away, and we are so grateful for that.
Melody Bogan attended last month’s Strengthening Parent-Professional Partnerships Conference and was greatly impacted by the information she received that day. More on here story below.
I just wanted to thank you again for that conference. It was truly wonderful. I received so much great information that day, and I walked out feeling happy and hopeful! The flow of the day was well-planned. The speakers moved around, which helped me to not feel tired from just “sitting and listening” all day. After that day, I was feeling overwhelmed by all of my son’s appointments coming up, and my available sick time at work is dwindling fast. So I called a nurse at my son’s primary care clinic and asked if there was any way to consolidate some of these appointments to one day and limit my time off from work. Voila, it was done while I was on the phone with her, and I feel like a great weight was lifted! What a great example of Medical Home in action. What a great example of Ohio F2F empowering a mom to advocate for what her family needs and initiate the solution to a problem by working with a healthcare provider.
After the conference and her experience with consolidating some appointments, Melody wrote a letter to the clinic where her son was seen. Read it here.