ATLANTA — The clock is ticking for the many families who rely on a medical assistance program set to expire Saturday.
A Medicaid program, known as Appendix K, became available in Georgia during the pandemic to temporarily allow family members to become paid caregivers. This helped to limit people entering their homes.
Chelsie Nichole is one of the many parents who has used this program throughout the past three years.
"It was a temporary program designed to fill in the gap for us while they set up some long term options for our families and now here we are three years later, it's coming up for extension again and there seems to be no desire whatsoever to continue extending it," she said.
Nichole is a mother-of-five-turned-nurse for her daughter Rosie, who has Pfeiffer Syndrome. She has a closet full of every single thing you may need to take care of the 5-year-old.
"I could probably pass a nursing exam if I needed to because we have to learn the lingo and we have to take care of our kids. We don't have 24/7 care. So you've got families at home who became more independent, who didn't have to have a stranger or multiple strangers in and out of their home bringing illnesses from other families," she said.
For the last three years, Nichole has been able to stay at home taking care of Rosie through Georgia Pediatric Program's (GAPP) use of Appendix K. She explained that the program allowed her to become a paid caregiver in efforts to help with the nursing shortage and reduce the risk of families getting COVID.
"If we don’t have these systems in place, our families don’t have an income, we can’t work and stay awake 24 hours a day. Also, there’s just not enough nurses, so if you don’t have the nursing staff in place, there are no other options besides paid family caregivers," she added.
Previously, the temporary program has been extended yearly, but on Thursday - just two days before it is set to expire - families received a letter from GAPP, notifying them that the program will end Saturday.
At the bottom of the letter, they are asked to sign a statement saying they are ineligible for unemployment.
"On top of that, my daughter’s 5. She’s now had 27 surgeries to date. We have that constant medical stress already on us," she said. "Then to have these additional worries and paperwork, things that we’re trying to do. Our families are drowning. They’re overwhelmed already."
Nichole is part of Facebook groups where hundreds of parents believe this could have negative trickle effects, including the straining of children’s hospitals.
“We try really hard, especially coming into cold and flu season, RSV season, keeping our children out of the hospitals as much as possible. Right before the holidays, families are about to lose a significant portion of their income in addition to probably having to hospitalize or institutionalize their children," Nichole added.
Some of the parents on Facebook have signed multiple petitions asking for a permanent solution or another extension, and have reached out to Gov. Brian Kemp, Sen. Raphael Warnock, and the Georgia Department of Community Health (DCH). 11Alive reached out to the same agencies for answers. Gov. Kemp's office referred us to DCH.
We learned that the agency's board granted approval Thursday to amend some waivers that would allow the continued use of legally responsible individuals as family caregivers. DCH submitted those waivers to the Centers for Medicare and Medicaid Services and are now waiting for approval.
Read the Statement below from DCH:
"The Appendix K authority will expire automatically, as required by federal law, six months after the end of the federal public health emergency. On Nov. 9, 2023, the DCH Board granted approval for DCH to amend its NOW/COMP Home and Community Based 1915(c) waivers to allow the continued use of legally responsible individuals as family caregivers. We have submitted the waivers to CMS and are waiting for approval.
For those seeking assistance, NOW and COMP classes of assistance could be an option depending on availability of resources. For more information, Georgians can go to https://dbhdd.georgia.gov/be-dbhdd/be-compassionate/how-do-i-apply-dd-services."
11Alive is still waiting on a response from Sen. Warnock's office.