CW: Death & ABA Therapy
Rachel Neumann had to choose between taking time off to console her son when his father died and using her PTO to support her mother-in-law, who was diagnosed with terminal cancer the same week. She couldn’t take too much time off as the chief operating officer of COF Training Services, a company that services Kansas residents with intellectual disabilities, because of PTO budget cuts and staffing concerns — issues that most disability assistance providers in the state face.
Neumann elected to spend her time with her mother-in-law, who passed away a few weeks later. She and her family needed time to mourn, but Neumann had exhausted her PTO and had to return to work. Her first week back was challenging .
“My first week back I worked an overnight shift, two other direct care positions and I also had to perform CPR on a person that I’ve cared for for many years for 23 minutes after she had a sudden stroke,” Neumann said. “She luckily didn’t die from the stroke initially, and we were able to keep her alive, but unfortunately the damage was too great and she didn’t live long. I’m embarrassed to say that as someone who is committed to the field, that was not the first time I heavily considered leaving the field, and it sadly won’t be the last she told The Kansas Reflector
Neumann was one of several service providers who attended a legislative hearing on the Intellectual and Developmental Disability Waiver on Monday to urge for regular fee hikes. People with intellectual or developmental disabilities are placed on a waiting list regulated by the Kansas Department of Aging and Disability Services in order to get Medicaid-funded support waivers from the state.
The Medicaid waivers cover a variety of services such as in-home care, home delivered meals, and hospice care. Unfortunately, the waitlist has been a long-standing issue in the state. It has reached crisis proportions, with thousands of families awaiting services. According to KDADS data from June, 5,100 people are presently on the waiting list for the program.
Even if the state had sufficient funding to enroll everyone now on the waitlist in waiver programs, committee chairwoman Sen. Beverly Gossage, R-Eudora, said there weren’t enough providers to keep up with demand.
However, with limited financing, IDD service providers struggle to locate and keep enough employees to serve those who are currently receiving assistance, let alone those on the waiting list.
The state establishes Medicaid reimbursement rates. While Kansas lifted rates by 25% last year after years of stagnation, the adjusted rate is still insufficient to entice new workers.
Kansas Medicaid reimbursement rates for applied behavior analysis, a type of behavioral treatment, are $47 per hour. ABA is reimbursed at $140.24 per hour in Nebraska. Iowa Medicaid pays $65.36 per month.
Applied Behavior Analysis (ABA) is a controversial method used for behavior analysis. ABA is a collection of concepts that focuses on how behaviors change or are affected by the environment, as well as how learning occurs. The term behavior refers to the abilities and actions required to communicate, play, and live. While these principles affect everyone every day, they can be implemented systematically through interventions to help individuals learn and apply new abilities in their daily lives.
To improve and teach new behaviors, ABA requires the application of known learning principles, behavioral methods, and contextual adjustments. In practice, implementation must be systematic so that teachers can discover how to change behavior and comprehend how learning occurred. Experts say that ABA’s ultimate goal is to establish Improve socially important behaviors. Academic, social, communication, and daily living abilities are examples of such behaviors; essentially, any skill that will increase the individual’s independence and/or quality of life.
However, the therapy remains controversial. For example, use of painful aversive therapy, such as electric shock, to discourage negative behaviors such as self-injurious behavior is one of the most common criticisms of ABA. The Judge Rotenberg Center, is located in Massachusetts. It remains the only school, hospital, or residential facility in the United States that is permitted to utilize electric shock as a therapy for its residential students with cognitive and emotional disabilities, as of August 2021.
According to Doug Wisby, CEO of Multi Community Diversified Services Inc., last year’s increase in rates provided a little relief for his company, allowing it to increase worker pay, starting direct care personnel at $17 an hour. Without consistently inflation adjustments, he expressed concern that the company might struggle to offer competitive wages in a few years. In some states, it is possible to earn more working at a fast food restaurant than in a direct care position.
Medicaid’s home and community-based services enable disabled people to live at home rather than in an institution. Medicaid must be expanded, and waiting lists must be removed. Without Medicaid’s services, people are frequently forced into dangerous situations, which can have devastating consequences.
Sources:
DeVita-Raeburn, Elizabeth. “Is the Most Common Therapy for Autism Cruel?” The Atlantic, 12 Aug. 2016, http://www.theatlantic.com/health/archive/2016/08/aba-autism-controversy/495272/#.
Hendricks, Dawn, et al. Autism Q & A: What Is Applied Behavior Analysis. 2018.
“Home- and Community-Based Services.” Centers for Medicare & Medicaid Services, United States Department of Health and Human Services, https://www.cms.gov/outreach-and-education/american-indian-alaska-native/aian/ltss-ta-center/info/hcbs.
Mirpro, Rachel. “Faced with Overwhelming Need, Disability Services Providers Urge More Funding from Kansas Lawmakers.” Kansas Reflector, 8 Aug. 2023, kansasreflector.com/2023/08/07/faced-with-overwhelming-need-disability-services-providers-urge-kansas-lawmakers-for-more-funding/.
Young, Robin, and Serena McMahon. “Disability Advocates Fight Ruling Allowing Electric Shock Treatment Back in Mass.. Residential School.” Disability Advocates Fight Ruling Allowing Electric Shock Treatment Back In Mass. Residential School | Here & Now, WBUR, 12 Aug. 2021, https://www.wbur.org/hereandnow/2021/08/12/shock-treatment-school-disability.