Kaitlyn Cunningham has cerebral palsy and is nonverbal. She wanted to return home after surviving five surgeries and going close to organ failure. Instead, she would confront another challenge: battling her way out of the hospital. Cunningham would be confined to the second floor of Cedar Park Regional Medical Center for another month, caught up in a web of insurance denials, care needs, and coverage confusion.
Kathy Cunningham says her daughter enjoyed sitting in front of the windows by the hospital’s elevator. sometimes, they would see a turkey vulture.
But the mother and daughter couldn’t simply leave. Doctors determined that Kaitlyn Cunningham was healthy enough to be discharged from the main hospital after one month. However, she required ongoing nursing care to fully recover. She needed a nurse to provide care for her tracheostomy tube. A nurse would also have to use a wound vacuum, which helped close her stomach.
Vacuum-assisted closure (VAC) is an alternate way of wound treatment that use negative pressure to prepare the wound for spontaneous healing or less invasive reconstructive procedures. VAC use involves thorough debridement, sufficient haemostasis, and the placement of sterile foam dressings. A fenestrated tube is inserted in the foam, and the wound is sealed with adhesive tape to keep it airtight.
The fenestrate tube is coupled to a vacuum pump and a fluid collection container. The machine provides continuous or intermittent suction; the VAC dressings are changed on the third day. Negative pressure therapy stabilizes the wound environment, lowers edema and bacterial load, increases tissue perfusion, and promotes granulation tissue and angiogenesis. All of these increase the chance of primary wound closure, reducing the need for other potentially invasive procedures.
Attempting to get the care Kaitlyn needed however, would lead the Cunninghams into a dizzying circle of specialized programs—an experience not uncommon for medically complex Texans, particularly those on Medicaid waivers, which provide services such as home healthcare and therapies.
According to Marjorie Costello, chief administrative officer for Disability Services of the Southwest, the web of insurance, doctors, nurses, and Medicaid program directors, known as “care coordination,” can be flawed and complicated, causing some people to spend more time in the hospital than necessary. Her organization is one of several groups with which the state contracts to provide these specialized services to disabled Texans.
A variety of systemic flaws can keep these Texans in the hospital. These include a nursing shortage, an immense gap in what specialty programs address, and a lack of clear communication and structure among case managers, state services directors, and insurance companies.
“There’s a severe breakdown in care coordination across our long-term care programs,” said Costello.
Extended hospital stays can have an array of disastrous consequences. For example, they cost the state more money. They cause waiver programs to lose anticipated funding. However, they can also lead to Texans with disabilities losing caregivers during a shortage.
Unfortunately, the state absorbs the cost of these discharge delays. managed care organizations absorb the immediate expense of hospital care. The state funds these organizations. if they report increased costs of care, the state may increase the amount it pays them.
Extended hospital stays take a toll on people mentally and emotionally as well.
“The hardest thing was when I really thought she wasn’t going to make it another day, when her kidneys started to fail,” Kathy Cunningham, said. “I didn’t sleep that night, I cried the whole night long.”
“Then, when she came out of it and started bouncing back, it became a quest to get out of here,” she explained of their two-month stay. “That’s been the battle, now.”
Kaitlyn Cunningham had a full life before she was hospitalized. She received physical and speech therapies through her Medicaid waiver program. It allowed her to move her muscles and use a communication device. She would go shopping with caregivers or see movies. Her Medicaid waiver program, Community Living Assistance and Support Services (CLASS), allowed her to have therapy, and have an in home caregiver. But she had never used the nursing services provided by the waiver before.
This became one of the first challenges they encountered, according to Kathy Cunningham. A person cannot be on more than one waiver program at the same time, which means unique cases like her daughter’s can fall between the cracks. She said that she had to sort it out on her own because many case managers she interacted with lacked sufficient knowledge about waiver programs in general.
As of March 5, more than 156,000 Texans were waiting for a Medicaid waiver. However, in the 2021 session, lawmakers added just 1,549 new spaces to these programs. These numbers account for approximately 0.009% of people on the waitlist.
Kaitlyn Cunningham’s nursing care would be more easily accessible through another program: Home and Community-Based Services. But she would have to leave the CLASS program, for which she had waited years. Once she recovered, she wouldn’t be able to return to CLASS right away.
Garth Corbett, an attorney for Disability Rights Texas, said it’s difficult to navigate the gaps in waiver program services when people start in a program designed for less intensive forms of care but later develop medical conditions which increase their needs. It’s a “problem across waiver programs,” Corbett said, but CLASS, for example, is a more challenging program to acquire medical services via. When Texans’ health and needs change, they can “submit a revised plan of care,” according to Jennifer Ruffcorn, a spokesman for the Texas Health and Human Services Commission.
Going through this process takes time, and the Cunninghams understood this. Initially, doctors recommended that Kaitlyn Cunningham move to a specialty hospital for longer-term acute treatment. Her Medicaid coverage denied it. As her mother sought alternative treatment, Kaitlyn Cunningham developed bed sores. Cunningham, who has cortical vision impairment, used her communication device sparingly because she felt overwhelmed and unable to move.
In order to get nursing through CLASS, her mother would need to obtain state clearance to include medical care and then locate a registered nurse who was certified in the state of Texas and willing to work for $38.20 per hour. Kathy searched for weeks and found one person who met her qualifications. However, the person was unsure that she wanted to work with Kaitlyn.
Nursing shortages have occurred nationwide since before the pandemic began. In Texas there is also a caregiver shortage. Low wages are also an issue. Personal care attendants in Texas are paid just $10.60 an hour.
Making matters worse a proposed law change from the state’s Health and Human Services Commission would not allow an adult “to be away from the home for any period of time” while a nurse is providing care.
When asked why HHSC proposed the rule change, spokesperson Jennifer Ruffcorn stated that they were “clarifying the existing private duty nursing rules and policy.”
According to the agency, this is how they have always viewed the policy. As a result, HHSC “is not setting new or different expectations about how this policy is monitored or reported,” according to Ruffcorn. However, advocates warn the formalized proposal may cause uncertainty for people who oversee nursing agencies and impact families’ eligibility for their services.
Kathy Cunningham now sets an alarm every two hours throughout the night, never sleeping more than three hours at a stretch, to ensure her daughter is breathing and doesn’t need anything. Now that they’re home, she’s taken over all additional medical care for her daughter because they still don’t have a regular nurse.
They had come up with an unusual approach to finally leave the hospital. Health insurance would pay for a contracted nurse to visit twice a week to take care of Kaitlyn Cunningham’s wound until they found someone through CLASS. Kathy said that when she got home, she found a letter informing her that her daughter’s Medicaid status was “under review.” She described it as “another thing to worry about.”
Kathy doesn’t have any other relatives nearby who can assist with Kaitlyn’s care. Kaitlyn’s dad is not a part of their lives. Occasionally, people from church will come over so that she can shower or go grocery shopping.
Kathy argued that those who have insurance should be able to rely on it without having to navigate a bureaucratic maze. “To put all of the burden on the caregiver, the only caregiver a person has, to also try and do all of that?” she went on to say. “Something’s got to change.”
Waiting lists must be removed, and Medicaid should be expanded. Without Medicaid People’s lives are in jeopardyEveryone should have access to the services they require.
Sources:
Agarwal, Pawan et al. “Vacuum assisted closure (VAC)/negative pressure wound therapy (NPWT) for difficult wounds: A review.” Journal of Clinical Orthopaedics and Trauma vol. 10,5 (2019): 845-848. doi:10.1016/j.jcot.2019.06.015
Bohra, Neelam. “With Texas Births Rising Post-Roe, Disability Advocates Say Child Services Need Bolstering.” The Texas Tribune, The Texas Tribune, 11 Mar. 2024, http://www.texastribune.org/2024/03/11/Texas-disability-services-abo
Bohra, Neelam. “A Woman’s Fight to Escape the Hospital Shows Medicaid’s Limits for Disabled Texans.” The Texas Tribune, The Texas Tribune, 28 Mar. 2024, http://www.texastribune.org/2024/03/28/texas-medicaid-disability-hospital/.