IFU4C

Protecting Caregiver Choice ● Upholding Family Care Rights ● Ensuring Quality Care for All

Welcome to Indiana Families United for Care!

OUR MISSION
Indiana Families United for Care aims to empower families with advocacy tools, champion sustainable Medicaid programs, and work to remove barriers so caregivers can provide necessary care without obstacles. We stand for ethical treatment, family care rights, and the protection of caregiver choices in Indiana.

Indiana Families United for Care is a powerful grassroots movement of families dedicated to securing the support our loved ones need, empowering family caregivers with essential advocacy tools, and driving impactful policy changes to improve the quality of life for individuals with disabilities in Indiana.

We collaborate with other organizations, government officials, and community groups to amplify the voice of family caregivers.

Our advocacy focuses on protecting caregiver choices and promoting policies that support and empower those who provide necessary care.

____________________________________

The FSSA’s policies fail to address the real challenges families and providers face. Instead of offering support, FSSA creates unnecessary obstacles, forcing families and providers to navigate an overly complicated system. Their lack of responsiveness and failure to collaborate puts undue strain on both families and caregivers, as well as the providers working to deliver quality care.

WAYS TO HELP

H.B. 1689 BILL SIGNING

Indiana Families United for Care had the privilege of joining Governor Mike Braun, The Arc of Indiana, and numerous families on August 27 for the ceremonial signing of H.B. 1689. This significant legislation marks a vital advancement for medically complex families across Indiana.

Key highlights of H.B. 1689 include the following:

- Establishing a clear definition for “extraordinary care.”

- Requiring the FSSA to report to the DDRS Advisory Council on plans for supporting individuals with extraordinary care needs.

- Mandating annual reports on the usage of Medicaid HCBS waivers to provide families and advocates with essential insights for improvement.

- Expanding the statewide ombudsman program to include Health & Wellness and Traumatic Brain Injury waivers.

- Initiating a study on the potential development of a Complex Care Assistant program in Indiana.

We extend our heartfelt gratitude to Rep. Ed Clere, the bill’s author, and Sen. Gregory Goode, the Senate sponsor, for their leadership, along with other supportive legislators. Special thanks to Kim Dodson, CEO of The Arc of Indiana, for her unwavering commitment, and to Lindsay Haake, our PR specialist, for effectively amplifying families’ voices throughout this journey.

KEY BARRIERS IN CARE

Restrictions on who can provide care
Limiting who can provide care restricts options, creating gaps in support and increasing the challenges posed by the ongoing workforce shortage for individuals with profound needs.

Denials and shifting responsibilities
Programs shift the burden onto families, or other services forcing them to scramble for care and supports that should be readily available.

Lack of Collaboration and Feedback
Policies are often introduced without meaningful input from those with real experience or frontline providers, resulting in confusion and failure to achieve their intended goals.

Bureaucratic barriers and Rigid Scheduling
Accessing basic care is complicated, with individuals forced to divide their daily needs across three services and two Medicaid programs, each with its own set of terms, requirements, and eligibility criteria. This increases administrative burdens and creates confusion, making it difficult to navigate and maintain compliance. Rigid, hourly-break-down scheduling fails to accommodate the full range of care needs, leaving little flexibility to ensure adequate support.

Unclear Communication and Guidance
Difficulty in accessing clear and actionable information from FSSA could create barriers when trying to make informed decisions about policies, emergency plans, or participant care.

Once FSSA implements a policy, feedback is not utilized or welcomed. This leaves opportunities for improvement ignored and issues unresolved, preventing meaningful changes to better serve both those relying on these services and those providing them.