Resources

Advocacy and Partnerships

Collaborative Improvement and Innovation Network (CoIIN) Project

Family Voices Indiana is a family leader partner for the Collaborative Improvement and Innovation Network (CoIIN) aims to improve the qualify of life for children with medical complexity, improve the well-being of their families, and increase the cost-effectiveness of their care by testing and sharing promising care delivery strategies and payment models. We offer the expertise of family experience and offer training and technical assistance/support to the CoIIN project’s care coordinators, as well as to the CoIIN state leadership team.

Covering Kids & Families (CKF)

Family Voices Indiana partners with CKF to offer families expert assistance with healthcare coverage and insurance. CKF offer in-person assistance with applying for insurance, including Medicaid.

First Steps Family Input

Learn how to be provide feedback and be and advocate for systems change.

GALA – Grupo de Apoyo para Latinos con Autismo Indianapolis

GALA is a support group for families with children with Autism Spectrum Disorder who reside in Indianapolis.

Hands in Autism Local Community Cadres (LCC)

The cadres strive to improve awareness about autism spectrum disorder (ASD) and to improve outcomes and quality of life for individuals with ASD in their community.

Many of the featured resources were originally developed to address trending concerns and questions. Please check with Family Voices Indiana for the most up to date information.

Medication Access and Safety for Children with Special Healthcare Needs (CSHCNs) During the COVID-19 Pandemic

This project, supported by the CTSI Trailblazer Award, is a collaboration of Family Voices Indiana and Purdue University-College of Pharmacy with the aim of improving medication related outcomes for CSHCNs. This project involves conducting an in-depth assessment of medication access and safety challenges for CSHCNs from the viewpoints of both family caregivers and healthcare workers caring for CSHCNs. The project is generating important insights into the unique medication-related challenges faced by family caregivers of CSHCNs, both long standing and newly emerging issues because of the COVID-19 pandemic. These will be used to inform new policy and interventions that improve the medication use experience of these children.

Navigate Newborn Screening 

Family Voices Indiana has partnered with the Navigate Newborn Screening project to promote a free training module for new and expecting parents for storytelling, advocacy, and information seeking in the newborn screening system. The module provides information and tools to understand and act on newborn screening results.

Telehealth Project

Family Voices Indiana has pioneered a telehealth project, which aims to help families access telehealth, or virtual medical and therapy appointments. Eligible families will be sponsored for 6 months of Comcast’s Internet Essentials program. Families will also participate in an online training with Family Voices Indiana to learn how to make the most of virtual appointments.