#EveryoneDeservesCare: This Is Us

July 6, 2022 / #EveryoneDeservesCare

In this week’s #EveryoneDeservesCare story, we hear directly from Kevin and Carolyn Anderson. Kevin shares what direct care services look like in his life, and both he and his mother Carolyn reflect on the devastating impact that the shortage of direct care workers has had on their lives.

“This is Us”

By Kevin Anderson and Carolyn Anderson

The Role of Direct Care in My Life
I was born on June 24, 1983, a fairly big, healthy baby. By six to nine months I had stopped rolling over and pushing myself off the bed. At one years of age, I was diagnosed with spinal muscular atrophy, the number one genetic killer of children under the age of two. This is a neuro-muscular disease that affects the motor neurons in the spinal cord causing them to weaken and die off.

Obviously, I made it past the age of two. I actually did okay until age three when I had my first respiratory infection. Age eight saw the introduction of a tracheostomy tube, ventilator (for sleeping and illness), and g-tube (gastronomy button). The g-button has been used as a supplement to my mechanical soft diet and for medications. It was then that I started receiving nurses through Medicaid-funded homecare.

My disease has progressed as I have gotten older. In addition to the ventilator, I have several more medical machines.

  • IPV (Intrapulmonary Percussive Ventilator) machine – two treatments/day. This helps to mobilize my secretions
  • Chest Wrap – two treatments/day – helps to break up my secretions
  • Cough Assist Machine – PRN. Almost every day – helps to bring up my secretions
  • Trobramycin aerosols – two weeks on/two weeks off – helps to control pseudomonas (bacteria) in my trach
  • I also use a feeding pump for nutrition via the g-button at nights

I have been allotted 115 nursing hours per week. I can count 56 as regular (which includes 47 night hours so my mother can sleep at night). Because of my extreme weakness, I have to be turned every 1.5 hours to prevent bedsores, sometimes suctioned down my trach and hooked up and disconnected from a feeding pump at night. Without a nurse, my mother puts some cushions on the floor to try to get some sleep.

My mornings include 4-4.5 hours of respiratory treatments, personal care and breakfast. This takes us until about 12:30. I am free until about 3:30, where I have water/juice and put back in bed for a change of position and void. Then again, we start the whole process over at 8:30 p.m.


Life without Adequate Direct Care Services: The Impact
Kevin writes:
As you can see, my 39 years have been challenging, but none of it prepared me for the last two years. Yes, the COVID-19 pandemic, and the isolation it necessitated, was bad enough. It is all the more stressful without sufficient nursing.

The anxiety this causes can feel paralyzing at times, especially since there is no end resolution in sight. How can my mother and I possibly plan for the future when getting through the day is tough enough? The nurses just are not there. This MUST change.

Pay for homecare nurses and aids needs to be increased, and benefits need to keep up with the modern workforce. I do not know what else needs to happen, but clearly, more needs to be done.

I have needed homecare nursing for 30 years. The current shortage is, by far, the most dire and devastating in my memory.

Families — like ours — are desperate. We will persevere as best we can, but we need help. Please help us.

Carolyn, Kevin’s mother, writes:

On June 24, 1983, we welcomed our second son into the world. All seemed right until he was diagnosed with spinal muscular atrophy (SMA) at the age of one. Our lives would forever change.

We were told he might not live past the age of two. He did and we thanked God.

We were told there might come a time he might need to get a tracheotomy and go on a ventilator. He did and we were slower to thank God.

We were told he would be eligible for nursing through a Medicaid-funded Ohio Waiver Program. He was and once again we thanked God.

We were told people with SMA are, for whatever reason, usually quite smart. He was and we thanked God. He was intelligent, but it was the nurses that accompanied him to school that made his education a truly rewarding experience. Not only Kevin benefitted, but every student/teacher he came in contact with experienced the benefits of inclusion/diversity. He went on to receive a B.A. in communications (summa cum laude) from Lake Erie College. In fact, it was his nurse that accompanied him on stage to receive his diploma.

We weren’t told how much his medical condition would progress. Technology has come a long way. We should know. Kevin has almost every respiratory machine there is. Still we thanked God for the advanced technology that allowed him to stay with us.

We weren’t told that there would come a time when the nurses pool would dry up thanks to the pandemic. But, it has and I ask, what’s up God?

At age 71, I never expected my life to be this hard. And yet it is. Kevin’s care calls for nighttime nurses so I can sleep, along with daytime hours to handle his very involved care. Without them Kevin and I have become prisoners in our own home. The lack of nurses has not only affected Kevin’s physical care but also his emotional and mental well-being. I have had to postpone needed doctor’s appointments and procedures. At my age, that’s probably not the best thing to do. We have had to discuss Kevin going into a hospital if I suddenly get sick or need surgery because of the lack of nursing care. Can’t you help us God?

And then I got to thinking. Perhaps God helps those who help themselves. Perhaps our role is not just as parents, but also as teachers and advocates. I still believe that most people are good and would want to help if they could put themselves in our places, if for only a day.

So, I appeal to all these good people — legislators and Medicaid personnel to do the right thing. Establish a committee to investigate how to recruit and keep both aides and nurses long term. No doubt increase in pay will be a key component, but also ways to recruit nationally and thinking outside the box when it comes to regulations.

Please open their eyes and ears God.

#EveryoneDeservesCare shares real stories from disabled Ohioans that have been affected by the Direct Care Workforce Crisis in order to educate the population and those in power to make change on the dire nature of this issue. Direct Care Workers are people who provide home care services, such as certified nurses, home health aides, personal care aides, caregivers and companions. Factors contributing to a lack of care for disabled Ohioans range from low-pay, inadequate incentives to remain in a care field, and lack of sufficient funding for service systems. Due to the impact of the crisis, disabled Ohioans have gone without their basic needs and wants being met for years. Many have either been forced into nursing facilities or other institutions or have endured a lower quality of life and risks to their health and safety.

If you would like to share your story for this series, please visit our webpage at https://bit.ly/3HFz6rz or reach out to our Community Engagement Coordinator, Alexia Kemerling at akemerling@disabilityrightsohio.org.
All stories and information published in this series have been shared with explicit consent.

 

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