10:47

#EveryoneDeservesCare: Elizabeth and John

May 24, 2023

Elizabeth Schneider shares her story of the nursing crisis impact on behalf of herself and her son, John.


Video Transcript


Speaker: Elizabeth Schneider, Caregiver

Please introduce yourself in a few short sentences.

Elizabeth Schneider: Hello, my name is Elizabeth Schneider. I am the mother non licensed caregiver and legal guardian for my son John Schneider, who's 29 years old.

Elizabeth Schneider: John has Cerebral Palsy, profound Developmental Delay, Epilepsy, Incontinence. He's in chronic respiratory failure. So he's on a ventilator 24 7. He's also bed-bound and wheelchair bound. He's under the Ohio Home Care Waiver and it's managed by the Akron/Canton Area on Aging and Disabilities.

How many hours of nursing care are you allowed a week? How many hours of nursing are you actually getting?

Elizabeth Schneider: John is allowed 112 hours a week of nursing care through the Medicaid Home Care program. Last week, he had a total of 64. Next week, he'll have a total of 40 for the whole month of May. He should have 560 hours. Of that, Only 296 hours will be staffed, leaving me to do the other 264 hours of care. Plus my 57 hours per week. And just for a visual, everything you see in red are all of the shifts that I'm going to have to cover for the month of May. This is typical week after week, month after month, and now year after year.

What tasks do nurses do for you or your loved one? What is it like for you when you or your family have all the care you need?

Elizabeth Schneider: The various nursing tasks for John would include monitoring the ventilator settings. Primarily that is the most important one. We also have a carbon dioxide monitor that uh we use intermittently to monitor his uh CO2 in the blood. Of course, suctioning would be a an hourly activity for John. Positioning in his bed and also in his wheelchair. He needs to be repositioned in the chair at least every two hours. And also in the bed. The nurses would monitor his heart rate, his blood pressure, his oxygen saturations, his temperature and his weight. They would assist with all of his personal hygiene. They would be on the alert for daily skin breakdown that he seems to have at one point or another. Um He has range of motion that we do to help as he grows older, he's getting stiffer. Uh the longer he's in a wheelchair, He's tube fed, so administration of the tube feeding is very important that it's measured out correctly. It has to be balanced with the his fluid intake and the G tube site. It has to be monitored for infection or any kind of skin breakdown. The nurses also, uh, use a bowel and bladder routine with him. Although he is incontinent, uh, the bowel routine is done twice a week and it's very involved and, uh, they also order supplies for him, making sure he has all of them. He has a very extensive list of medical supplies that he must have to survive. They've also met, uh, monitor his seizure activity. He has Lennox–Gastaut um, Epilepsy which is multiple types of tonic clonic Grand mal seizures. He's on a large array of seizure medications and so safety precautions have to be made. Once he has a seizure, they have to be right there to throw a pillow here or grab an arm there before it hits the wall. He can't be left alone. He also tears his trach(eotomy) apart. He takes the tubing, gets his hands on it and undoes the whole ventilator uh apparatus. So they have to be right there. And on hand. The nurses also assist with laundry and housekeeping, keeping his area clean and they offer the most wonderful emotional support for John. John would rather see a person's face and have them sing to him than anything else in the world. He loves to be talked to and he interacts with a smile or with a frown. But that emotional support is so important that the nurses give to him on a daily basis.

How have you been affected by the care crisis?

Elizabeth Schneider: This is the kind of predicament the nursing crisis has had upon us. I'm a retired 67 year old mother, caregiver and legal guardian for my son. I've been a personal care attendant in the Ohio Medicaid Home Care program from 2005 to 2020 until the pandemic hit. And that's when I stopped. I applied to be a home care attendant under appendix K but I was denied by my son's case manager supervisor and PC G because I am his mother, legal guardian and I'm not a nurse. They refused to acknowledge this pandemic remedy to alleviate the nursing crisis, but it was just fine with them if I work all of the skilled nursing hours for free on top of my 57 free hours, in order to ensure that all the necessary tasks and shifts are completed, I've been asked to work without pay for all of the vacant scheduled nursing shifts because of this nursing crisis, I'm unable to work even online because of his needs. And this is a difficult situation for me. As I rely, I did rely upon my wages to cover our living expenses. I take pride in my work as a reliable caregiver. So I'm hoping that this matter can be addressed in a timely manner. And so that no further financial or physical hardship for myself or my adult son will be experienced. He's at risk at being institutionalized. If something happens to me, we are not alone. We are uh in great company here with the people that you're not seeing on video that are at home that don't have a voice that are in a very similar situation or even worse than we are. I'm very grateful for your understanding and I'm looking forward to a remedy soon.

What needs to happen to improve access to skilled nursing care through home and community based services?

Elizabeth Schneider: To improve access to nursing in the HCBS. It really comes down to this money. We need to attract younger nurses to do this very, very difficult job. We lost three nurses because of the competition from local hospitals who were offering an insane amount of money per hour for nurses to come and join them. Three nurses in a very short period of time were pulled away because of money. So I joined the um Ohio Nursing Crisis Advocacy Committee and our research has showed us that another little visual here. We do have a graph here. Sorry, not too good, but it's there. And we researched Michigan, Pennsylvania, Indiana, West Virginia, North Carolina and Kentucky. And we ended up being the lowest paying state of all of these other states for their independent providers and agencies, all RNs and LPNs So we proposed the following actions to improve the nursing crisis in our state. We need to increase the hourly pay rates as follows. An independent provider RN $46 an hour, an independent LPN $38.52 an hour. Agency RNs $52, agency LPNs $46. We need to quickly remedy the ODM's (Ohio Department of Medicaid) failure to pay providers in a timely manner and strategize to prevent major pay disruptions in the future. We need to eliminate and separate, separate rate for the first hour and make each hour of work a consistent rate of pay. It's important to note that independent providers will see the entire increase while agency and nurses will only see a portion since agency reimbursement is used to pay both nurses and overhead costs. Agency nurses should get a fair and significant percentage of the rate increase. We need to create a shift differential for weekend shifts and provide holiday pay to incentivize providers to work difficult to staff hours. We need to create an oversight committee to monitor the crisis, increase transparency of managed care organizations in the MyCare Waiver, including their pay rates and prevent the MCO plans from paying providers even less than the standard Medicaid rate.



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