GCDD's Telling our Stories: Callie's Path
by Shannon Turner, Photographer Lynsey Weatherspoon
Callie Moore, a 22-year-old woman with seizure disorder and cerebral palsy is on a new journey toward independent living. She’s learning how to be independent of her mother, Pam, and is looking at getting an apartment in nearby Athens. It’s only a recent development through her newly completed PATH. PATH stands for "Planning Alternative Tomorrows with Hope," a process designed by three leaders in the inclusive community movement Jack Pearpoint, John O’Brien and Marsha Forest. It helps people of all ages and abilities realistically plan to successfully reach their goals.
Callie's mom, Pam works for Georgia Options, which is an Athens-based nonprofit which supports people with disabilities to live in their own homes and to have typical life experiences. Previously a high school English teacher, after Callie was born, Pam found that she was unable to support her daughter’s medical needs, if nothing else, on a logistical level: “Callie was my unintended entrance into the disability world.”
Callie has a trailblazing and pioneering spirit. Callie’s biggest groundbreaking act is the lawsuit she won in 2008, Anna Moore vs. Georgia Medicaid. Within six months after she started nursing services at the age of three, Medicaid balked and said she didn’t need that much nursing care.
From the time Callie was three to age 12, every six months or so, they would get a letter saying that she needed less nursing care. They would have mediations and hearings in the state courts. Every time, she won, but Medicaid continued to threaten to lessen her services. They started meeting with the Georgia Advocacy Office and learning about state laws.
When Callie was 12, they got yet another notice they were going to cut her hours. The Georgia Advocacy Office advised it was time to let Callie’s case provide some precedence and stop the state courts from trying to intervene in her care.
In the final ruling, the federal district court found that states participating in the Medicaid program do not have the discretion to deny funding for treatments and services when prescribed by a treating physician for a Medicaid-eligible child. The case had implications for more than 700,000 children in Georgia who were eligible for Medicaid. It earned her name recognition throughout the disability community.
Callie now receives the COMP Medicaid Waiver, which started when she turned 21, and pays for all of her nursing supports. The application process was long, but they feel like maybe that's necessary to know what individuals really need. She and her mother encountered hurdles when setting up services. Like many people, Callie was approved for waiver funding but faced a shortage of providers in their area. Pam says, “There needs to be energy put into making sure waiver services don’t just look good on paper but are being provided as approved.”
Callie typically has two practitioners with her when mom’s at work. She has a nurse and a certified nursing assistant (CNA) for community access support. For the CNA, they typically try to get someone around Callie’s age who enjoys doing the same things as Callie. Callie also has a nurse overnight. These are all supports paid for by her Medicaid waiver.
We asked Callie what she would like to tell an elected official, if we brought them into the conversation. She replied, “This waiver system can make a huge difference in the quality of someone’s life. It can make life worth living.” Pam follows up: “Please know that the system is broken. Callie's support is a win, but there are people who need services and aren't getting them. Waiver recipients and their families are able and willing to help state leaders find solutions.”
To read more in Making a Difference magazine, see below: