FOR IMMEDIATE RELEASE
IN HONOR OF OLMSTEAD
By Mykah Knitig
“How do you define disability?” I asked.
“Having to make arrangements to be able to function in the way that society calls ‘normal’,” Erna answered.
In April of 2016, Erna had back surgery. She spent about two months in recovery at the hospital; the surgery had alleviated most of the pain that had driven her to surgery, but doctors informed her that she would never again use her legs to the extent she had before. She had managed with a walker for roughly four months, until September found Erna weak and unable to move herself at all. As her daughter returned home from work one evening, Erna, still lying on the sofa where she’d been left that morning, implored her daughter to bring her to the emergency room. When tests revealed a kidney stone blocking her right kidney, an emergency surgery was arranged for six the following morning; Erna didn’t make it through the night. “I went into congestive heart failure [and] kidney failure; sepsis had set in and was shutting my organs down,” she recollected. “So, I went pretty much into a coma.” A week later, the family was advised to begin making arrangements for Erna, who would likely not be waking up.
“About three days later, I woke up,” retailed Erna, “completely paralyzed from the neck down; I could not even move a finger.” After a myriad of doctors and tests, Erna learned she had been suffering the effects of critical illness polyneuropathy. It’s a rare disease that affects the peripheral nerves, occurring as a complication of severe trauma or infection; the only treatment is continual therapy, “which you cannot get here [affordably],” Erna remarked. The solution was to transfer her into a nursing facility in October of 2016. There, she received intermittent therapy for roughly four months out of her thirteen month stay, though she needed it on a much more regular basis. Supposed to be getting up for three two-hour intervals each day, she instead would be sat in a wheelchair each day for a week, then given therapy each day for the next. After these two weeks, she would remain bedbound for a two to three month waiting period. This routine was apparently attributed to the “hassle” of proper care; she was reminded each time she asked about being helped up that the required daily note-taking for her insurance made giving her the necessary therapy too much of a nuisance. If it was not the former, then her insurance simply “wouldn’t cover it this time.” To finally get herself into a wheelchair daily necessitated calling the state’s Department of Community Health. One day after having made the call, Erna was left in her wheelchair for six hours; her daughter came to find her crying in pain and soaked in her own urine.
Erna’s account of her experience at her nursing home portrays the acute neglect of residents that is, regrettably, all too common. Unable to feed herself in her condition, she recalled a period of three days during which she did not eat for lack of aid, despite routinely calling on the nurses for assistance. In most other cases, by the time anyone came to feed her, the meals which piled up on the tray beside her had long since become cold, and the aide did not care to warm them. When her daughter learned of the egregious circumstances Erna had been subjected to, she again called upon the state for help. Seeing as the nursing home was unfit to adjudicate the conditions of their own facility, the state responded by sending a judge and conducting more frequent inspections. Erna laughed as she recounted an interview with a state inspector to whom she’d complained about the roach infestation and the rats residing under her roommate’s bed. Afterwards, “she started out the door,” Erna chuckled, “and a roach ran across the floor. She stepped on it,” yet not even a citation came of the inspection.
Around the thirteen month mark, Erna was informed that her insurance would no longer cover her care. The Facility Administrator had come into Erna’s room declaring that her insurance wasn’t paying, she’d booked her a motel room, and that Erna would be left with the responsibility of payment upon her arrival. Despite having been repeatedly censured by the judge for having neglected their duty to help Erna find a new living arrangement, the nursing home ultimately provided nothing more than contact information for the NWGA Center for Independent Living. It was NWGACIL that provided her with the resources she needed to successfully transition back into her community. With the funding the nonprofit receives, Independent Living Coordinators Jill Baldwin and Christopher Holcomb were able to get Erna assistive technology such as a sliding transfer bench, a power chair, and a smart lock for her front door, which allows her to unlock the door from her bed. The center also put Erna in contact with an aide who helps her out of bed every morning. Each of these technologies and services are vital to Erna’s ability to live actively in her community.
“I guess I’d known about Olmstead Decision for a while,” Erna said, “I just didn’t know the name.” The name Olmstead comes from Tommy Olmstead, Commissioner of the Georgia Department of Human Resources, who spoke in defense of the state in the case against Lois Curtis and later, Elaine Wilson. Both women lived with cognitive disabilities, and, though they could mostly function independently, a few needs unmet by their communities found them cycling through hospitals and homelessness. Their case asserted that to confine people with disabilities to institutions was discriminatory, and that the services necessary to keep such individuals out of these institutions should be offered within the community. This allows people like Erna to live freely and independently within their communities. When asked what Olmstead meant to her and what people should know about the Olmstead Decision, Erna answered, “Someone stood up to have the right to be able to live independently…I think people that have disabilities need to know that someone went to bat for them. [People without disabilities] need to know that these people can live out there just like they can.”
[For more information, please contact Mykah Knitig or Erna Dobbs at 706.314.0008]