Op-ed: Left Behind—FSSA botches July transition for attendant care families
January 15 started as a normal day for Westfield, Ind. mom Tendra Duff. Her identical twin sons woke up at their normal time of 5 a.m. They both require around-the-clock supervision, sleeping in one-to-two-hour intervals. One twin is non-verbal, incontinent, partially mobile and needs assistance with all activities of daily living. Tendra cleaned his feeding tube (g-tube) site, applied a barrier cream to minimize irritation, checked for skin breakdown during a diaper change, dressed him, put shoes/socks/orthotics on, brushed his teeth and did his g-tube feeds. Meanwhile, the other twin also needed assistance with his activities of daily living. After Tendra got both boys ready to leave the house for the day, she packed a bag with a backup g-tube, syringes, extensions, g-tube feeds, a change of clothes, diapers, wipes and other medical necessities. Every day is different in the Duff household since Tendra is the legally responsible individual (LRI) for her twins. January 15 was especially different since Tendra received an email announcing the Indiana Family and Social Services Administration’s cuts to Medicaid’s attendant care program (ATTC) for LRIs.
As her twins’ caregiver in the program, Tendra made a livable wage. She has a four-year college degree, but her employment opportunities are limited as a result of her sons’ medical needs. Due to the FSSA cuts, Tendra – and the other 1,700 affected families – are no longer permitted to be paid LRIs. They were given two options: switch to a new program, structured family caregiving, or find a caregiver who is not a legally responsible individual. Both options pose serious problems. The pay for structured family caregiving is a financial loss since families receive a daily stipend versus an hourly wage. It’s also a loss in access to care, by putting in a single caregiver role with only one person having access to the daily stipend. As for finding a non-LRI caregiver, Indiana’s nursing shortage makes it nearly impossible to find an at-home nurse for the needed hours. The attendant care program seemed to save the state money by keeping people at home and out of facilities. Families, such as the Duffs, are wondering why FSSA made such drastic changes in such a short amount of time.
Since January, Tendra and the other affected families have been fighting for answers. They needed more information about structured family caregiving, the tiered pay, and the services covered to make an informed decision for care. Tendra stays in regular contact with FSSA, but she received general responses to her emailed questions. She was told to reach out to her Area Agency on Aging (AAA) or service providers. Both of these agencies also received little information about the new programs.
On July 1 – the day the waiver transition went live – Tendra did not receive confirmation that she was starting structured family caregiving from her case manager. She couldn't get into the system for one of her twins. However, Tendra tracked her hours hoping that she could get retroactive pay. Before July 1, providers couldn't even run a trial period for the pediatric population to ensure a smooth transition.
Tendra has stayed in contact with a network of around 300-plus families to help them navigate the broken system. From these families, she’s heard mixed responses about the transition or the lack thereof. Tendra considers herself the “best case scenario,” but she still may lose a significant amount of financial support for her family. As a lawmaker, Rep. Gregory W. Porter was hoping that the FSSA would prove him wrong on July 1. Unfortunately, he was proven right, and the transition has been a catastrophe.
On the Medicaid Oversight Committee this summer, he plans to call for the FSSA to keep its promise to our Hoosier families. He is guided by the fundamental belief that all people, including Tendra and her children, deserve the opportunity to live comfortably inside their own homes. We hope the FSSA takes the steps to make this fundamental belief a tangible reality.
Tendra Duff is an affected mother who has lived in Westfield, Ind. since 2011. She and her husband, Kevin, have three children, Kearsley (11) and their identical twin boys Kaiden and Trenin (8). Kaiden and Trenin were born 10 weeks early in 2016 with the diagnosis of Trisomy 21, commonly known as Down Syndrome. Both were admitted to the ICU where Kaiden spent 109 days and Trenin spent 245 days. Kaiden came home g-tube dependent and Trenin came home with a tracheostomy, ventilator, oxygen and is g-tube dependent as well.
Trenin has had two major airway reconstruction surgeries and was decannulated in 2021. He has constant specialist appointments in Cincinnati to monitor his growth and changes to his complex needs. Trenin and Kaiden see at least 14 different specialists multiple times throughout the year. Taking care of her boys, their appointments, therapies, and school needs is a full-time job in and of itself for Tendra.