Archive for June 12th, 2019

On June 9th, I read an article in the New York Times that reported on abuse to the disable in New York City, in state-run residences and group homes. It was a heartbreak to read that the most vulnerable who require compassion and love were so badly treated. Some of these residents even died at the hands of those they trust. This type of story always rips at my heart, my youngest brother is 50 with downs syndrome. He still receives incredible care by my, 93-year-old, mother. While he is independent in his activities of daily living, he will always require a caregiver as he lives in his playful preschooler mentality.

The story also took me back to a previous role as a nurse administrator. In an organization that had a population of medically fragile and severely disabled children, teens and young adults, I found a weak nursing department and care that did not meet my expectations. At first, I was told it was a previous nurse administrator who did not know how to manage staff and did not know the care regulations. I made it my mission to improve the training for staff and to focus on improving care. I did my best to educate the Executive Director and other administrators thinking it would be a welcomed change.

It took me a good 9 months before I awoke to the realization the Executive Director and HR were undermining the changes for all the wrong reasons. The Executive Director, (E.D.) wanted nursing care to be minimal since they were not a health facility. The mission of the organization was around education and communication with technology. The E.D. had rationalized over her long tenure that meeting standards of care for this population was only for medical facilities and not for housing medically fragile and severely disabled teens and young adults. She often stated that families don’t have to meet those standards so it could not be expected by the nursing department, since they replaced the family part of the year.

The article pointed out the union and arbitrators were lenient on staff who were abusive. The organization I worked in had the same mentality of putting some staff rights ahead of the clients. While they did not have any union employees the HR manager always started meetings with a statement that she was there to advocate for the employees. She worked more like a union rep than organization HR. It was the first organization I ever worked in that HR had no alliance with the mission and vision of the organization. I did my best to bring both the E.D. and H.R. representative back to the mission of serving this population of individuals.

Sometimes, when we think we can do good and want to fix a problem we do not always understand the motives of others. In this situation, I was naïve thinking everyone wanted to fix the problems. Yet the long-term pathology was a hard one to break. For more than a decade nursing was the ugly stepsister in this organization. Other departments saw their own contributions to the individual as more important than changing diapers and cleaning up vomit. The  employees in these departments often screamed and bullied nursing caregivers, licensed and non-licensed. If the nursing staff screamed back or even defended themselves, they were called unprofessional and disciplined while the other department staff member was called passionate. The nursing staff were often timed by these departments when they took an individual to the bathroom and claimed they took too long. The non-nursing staff had no idea what it took to clean and change a fully grown disable person who was wheelchair bound, and unable to assist. The care staff utilized lifts and often had to work in twos to ensure safety for the client and themselves as these individuals grew bigger and heavier. The staff had to work around the individual’s spasms and sometimes be interrupted by seizures. To clean and change an individual may have taken 10 to 20 minutes based on the individuals needs and the time it took to get back and forth through the facility. Many of these clients needed frequent tube feedings and medications. At the time I had started in this organization, the pathology was deep, and the environment was explosive. The individual who was the mission was now the rope in a tug of war as all departments were committed to their tunnel vision and anger towards nursing. Nursing was worn, defeated and very devalued.

I know I made some improvements there, but not enough. When I first arrived, the E.D. believed one RN could handle care for 14 medically fragile and severely disable individuals. The individualized care needs of these residences were never accounted for, nor were the fact these same individuals often had round the clock nursing when they were at home. The E.D., believed strongly as temporary housing, that level of attention was not required. She once told me, student’s in private boarding schools do not get that type of care, so it was unrealistic to think they should get it in this environment. Yet, she often promised families we would meet all the needs of their loved ones.

I eventually increase care to two LPNs and a RN covering the residence which included, 12 to 14 individuals, and the hundreds of medications, treatments and procedures these individuals required daily to survive. The staff had to respond to over-head calls for emergency care throughout the facility for seizures, respiratory problems or any other nursing need. Yet, it was consistently a struggle for the Executive Director as she often told me, ‘nursing cost too much and needed to be contained. ‘ I told her she could contain cost by stop recruiting and admitting individuals with this level of medical complexity and severe disability. I also approached the idea of developing a relationship with a care facility not far away so they could do the round the clock care and these individuals would stay in the organization as day participants. Neither of these ideas matched her idea of the legacy she wanted to leave behind. She wanted to fill the residence on a tight budget and prove it could be done with minimal cost. None of these individuals, were physically abused, yet many did not get the quality of care they deserved. The staff may have skipped a changing or two during the day, or they just stuffed their diaper with extra pads instead of changing when they were wet. Care needs may have been skipped but documented as done. Many of these behaviors developed out of fear of the abuse they received and was supported by HR. When new nursing staff started, they quickly became a target if they did not meld into the culture. While I was there the staff that consistently helped support the care goals I set and followed the policies were bullied by peers. Once I left, they were terminated for not getting along with the others on the team.

Spiritually, we each must accept the Karmic repercussions of our actions or lack of action. This one has been hard on me knowing I did not accomplish all that was needed for these blessed beings. I know, I made mistakes in this part of my journey, some out of being naïve, and others because I dug my heels in trying to create a change the organization was not open to receive. I recognize in hindsight, I could have made other decisions early on that may have torn through the organization and upset the apple cart. Yet, that approach did not seem right since these individuals truly found joy in this place and I was eager to work with the E.D. who expressed wanting to make the improvements. While it took me time to learn her true core beliefs, she too will learn through karma for her own spiritual growth.

Karma also goes for organizations, cultures, and countries. How Karma is delivered is not mine to guess or wish any negative repercussions. Every day, I remember the blessed beautiful souls of the individual clients, nursing staff, and other organization members and send them a blessing.

I often find myself thinking of the souls incarnated into a disable being and how their experience supports their spiritual growth. I believe that before any of us are born into this time and dimension, our Souls agree to support the other in the physical journey on earth. With this mindset, I feel blessed to honor and assist the soul of my brother in this lifetime. I believe that my mother has earned wings and a halo with the incredible care and love she gives to him. This same belief also sits heavy in my heart, as I think of the incredible souls in the clients at that previous organization. I try to remember that their was some successes regardless if it was all that needed to be done or not.  So today, I send positive thoughts and prayers to every soul incarnated in a human with a disability who is dependent on others. I also send blessings to those that love them and care for them to honor the soul within.

In the next book I am playing with the idea that China will find herself in a similar situation and will have to work through her own human frailties and those of others who care for our most vulnerable. Once again, I see here, if we all shift our thinking to honor the Soul within each person then abuse or neglect will fade away.


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