Family Voices Indiana

  From Covering Kids & Families of Indiana The five CareSource plans that offer vision and/or dental are not currently listed on  www.healthcare.gov  due to a filing error. CareSource and the Marketplace are working to correct the issue and hope the plans will be visible soon.   Learn More

From the Child Neurology Foundation Earlier this year, we sent out a survey to our community and heard from over 1,000 families about their diagnostic journey. In this upcoming one-hour webinar, you will learn about the different types of genetic tests available for children with neurologic conditions, the benefits and possible disadvantages of genetic testing and the role of a genetic counselor. We will also provide information on the cost of testing and discuss ways to cover that cost through insurance and other programs. The Role of Genetic Testing to Shorten the Diagnostic Odyssey webinar is on November 18 at 3 p.m ET. Sign up here.   

DDRS has released their latest newsletter.  Inside, find information on what waiver services can be provided virtually through the end of the year, how First Steps and Vocational Rehabilitation services are still able to assist families, resources to help plan for the holidays, and more.  Original publication can be found here: https://www.in.gov/fssa/ddrs/files/INvision_Nov-2020_v2.pdf INvision Nov-2020 v2 by Family Voices Indiana on Scribd

  Zoom Town Hall meetings begin next week! Now that the Council's 5-year State Plan Survey has come to an end, it's time for the next step: virtual Zoom town halls to get more information about individual and community concerns that may not fit easily into a survey format. We especially want to hear from people with disabilities and family members of people with disabilities. Tell us what you think! What are the most important issues for the Council to focus on over the next five years? There will be 8 Zoom meetings total. While we have targeted them regionally, if one is full or if it does not work with your schedule, there are others! Tues November 17;  Central Indiana  10-11:30 am EST Tues November 17;  Central Indiana  5-6:30pm EST Thurs November 19;  Southern Indiana  10-11:30 am EST Thurs November 19;  Southern Indiana  5-6:30pm EST Tues December 1;  Northeast Indiana  10-11:30 am EST Tues December 1;  Northeast Indiana  5-6:30pm EST Thurs December 3;  Northwest Indiana  

All parents advocate – speak on behalf of, even fight for – their child’s needs to teachers, doctors and others so their child can grow up happy and successful. When that military child has special needs, that advocacy grows to include learning laws, finding resources and even representing your child to special program administrators, school boards and others. When you are an effective advocate, you can maneuver through additional steps or necessary paperwork to get your military family support that otherwise would seem elusive. Here are some ways to help win your case for resources. From Exceptional Advocate News

As part of a new project that focuses on COVID-19’s impact on children’s healthcare, the  National Institute for Children’s Health Quality  (NICHQ) is gathering patient and family/caregiver stories. These stories will amplify and support webinars addressing systemic bias in health care and sharing successful practices for telehealth visits with children and families, as well in NICHQ-published articles.    NICHQ is particularly interested in hearing about the experiences of children who have special health care needs. For example: Has any child had challenges getting in-person care?  Has any child put off critical care due to concerns about COVID-19?  Has any child had telehealth appointments? What went well, and what could be improved?  Families will be provided a $50 stipend for a 30-minute interview.   For interested families or caregivers able to interview,  please complete the pre-interview questions at the link below by Nov. 20 . A project team member will reach out with next ste

Seizure disorders and epilepsy are frequently reported medical comorbidities in individuals with autism. While a correlation between the two exists, how they influence each other has yet to be determined. Researchers are still exploring whether autism leads to seizures, seizures contribute to autism, or the two conditions coexist. Seizures are more common in individuals with autism than in the general population. In the general population,  fewer than 1%  of children (age 17 and younger) develop clinical seizures. By comparison, one of the largest studies aimed at identifying the prevalence of epilepsy in children with autism found that among children aged 13 years and older with ASD, 26% were diagnosed with epilepsy. ( Viscidi E.W. et. al, 2013 ). Epilepsy in individuals with autism is most common in children over the age of 9. Children age 10 or older with autism had 2.35 times the odds of being diagnosed with epilepsy (p<.001) compared to younger children ( Viscidi E.W. et. al, 2

From J. Jacob Sipe, Executive Director of IHCDA There are many resources that are still available for households financially impacted by COVID-19: Please note : The text that is bold and underlined below is hyperlinked. Clicking on these words will take you to a webpage where you can find additional information. Rental Assistance State’s Rental Assistance Portal  – Is still accepting applications for rental assistance from qualifying Indiana renters living outside of Marion County. IndyRent Assistance Portal  – Marion County residents that are having a hard time paying rent can apply through the IndyRent Assistance Portal. The IndyRent application process is currently open with no waitlist code required. Mortgage Assistance  – Indiana’s Hardest Hit fund (HHF) is available to help Indiana homeowners who have fallen behind on their mortgage payments or who are unable to make future payments. Energy Assistance  – Applications are being accepted for the Low-Income Home Energy Assistance Pr

Dignity of risk is about the basic human right to make your own decisions, to take risks, to live a life you choose. Check out this video from The Council on Quality and Leadership to learn more about why dignity of risk is important when supporting a person with a disability.