An Open Letter to Lawmakers and Those In Positions Of Power

By Dr. Darolyn “Lyn” Jones, Mother, Disability Advocate, Life-Long Educator

My 19-year-old son, Will, has severe cerebral palsy and autism. He is nonverbal, non-ambulatory, and intellectually disabled. He has had 39 surgeries or procedures in 19 years.

Despite all of those challenges, Will remains a joy seeker. He is smart, funny, and has brought more joy, purpose, and change to this world than most neurotypical individuals can in a lifetime. In the 15 years my son has had access to home health care nursing, we have never been fully staffed. Home health care staffing has always been problematic – long before Covid.

One problem is that nurses who are employed at home health care agencies can choose their own cases. They are allowed to read about, or hear from the agency scheduler, the following critical information about my son: his full name, age, where he lives, how he lives, where he goes to school, his detailed and intimate medical history that explains and explores every part of his body and brain that works or doesn’t. In addition, the nurses are told our full names and address, who we are, what we do, how we live, if there are other children or pets in the home, if our home is clean, and what equipment we have access to in our home.

We – the family – are usually told nothing about the nurses before they arrive. Sometimes we get a first name, and sometimes we don’t – but never a last name. I asked about that once and was told it was to protect the nurse’s identity. The nurse can choose to share their last name, but are not obligated to do so, or to tell us anything about themselves.

Ironic. In a day and age where we are told to not share our children’s last names and photos to protect against predators, and adults are told not to share too much information because of identity fraud, we, the families of children and adults who require home health care, are required to do the opposite.

I don’t know if the nurse who is coming is an LPN, an RN, a BSN or something else. I don’t know their age, their capabilities, or whether they are interested in working with pediatric patients and individuals who are both medically fragile and intellectually disabled. I don’t know if they have ever seen a Baclofen pump or know how to change a g-tube. Should they know? Of course, but we have had nurses who had no experience with either.

First day back to school after two years

The nurse just shows up on day one. They are trained by my husband or me or by another nurse on the staff, and then they decide if they want the case. This is after they have been in our home, asked personal questions about ourselves and Will, and participated in the bodily and emotional examination and care of my son. After all of this, they choose.

Yes, families also have a say. If the family doesn’t think a nurse is a good fit, they can express their concerns to the agency. However, more than once, my husband and I have been told that if we don’t take the nurse who is willing to take our case, the agency won’t be able to find anyone else, at least not in a timely manner. Or the agency will disagree with us and insist the nurse is a good fit. This message comes from a scheduler with no medical background, and the message isn’t inferred; it’s clear: Take this nurse or get no one.

The agencies relay the opposite message to the nurses. Why? Because the agencies have more patients than nurses, so they can easily move nurses to another case and still be reimbursed and make their money.

In my 31 years in education, I have never been able to choose my students. I educate and take responsibility for them while they are in my care. In my husband’s 23-year military career, he didn’t get to choose his missions, who he served under, or where he served. He served his country. And you, the lawmakers, have never been able to choose your voters or constituents. You are elected to serve. Clearly, some members of the public are better served than others, as evidenced by the inequities we see in Indiana and around the country.

Will at the park

In the last five years, nursing staffing has become even worse for my family and other families like ours – again, long before the Covid pandemic. Staffing has been impacted by multiple factors: low Medicare and Medicaid reimbursements, not enough nurses to cover the growing number of health care facilities, not enough educators to teach nursing students, not enough hospitals that can provide the required hands-on clinical training for nursing students, and nurses leaving the field because of burnout or inadequate pay or benefits. Look it up if you like, or talk to anyone in healthcare. They will validate everything I wrote.

Home health care always suffers the most staffing shortages because the pay is typically less than that in medical facilities. Add to this that our son was growing up, and his health was becoming progressively worse. He wasn’t as “cute” or “able” and not as easy to handle physically.

He struggled with orthopedic and stomach pain, which made him easily upset. Because of his intellectual disability and limitations in the frontal cortex of his brain, plus the onset of puberty, he struggled with how to process that pain and those emotional reactions to pain and other confusing cues that surrounded him. He knew what his body used to do, and now he couldn’t do it anymore. He didn’t understand all of the surgeries, the therapies, and this progressively challenging life. And he didn’t understand who was coming next to care for him and what was happening around him. Imagine being extremely dependent, scared, confused, and unable to communicate. His emotional reactions were warranted. He required more care and more empathy and assurance from his nurses.

When the pandemic was gaining momentum in early 2020, I had a phone conversation with Will’s pulmonologist, and we agreed that Will shouldn’t go to school. Then a week later, the shutdown happened. At this time, we only had one nurse two days a week for eight hours. But the agency was always “looking” for nursing for us. My husband and I, now working from home, made the difficult decision to pause nursing because we were worried about the nurses being exposed to Covid and passing it on to us. Masks weren’t yet required for home health nurses – we were told they were working on that decision. We had kept our son alive for 17 years. He had suffered a lot and nearly died more than once. I wasn’t going to risk losing him to Covid until we had a better understanding of what was happening.

Christmas

Our intention was that we would return to nursing soon because, like everyone else, we thought the pandemic would soon be over. It wasn’t. For six months, my husband and I somehow managed to work from home, teaching and meeting online – something we had never done before – all while managing our son’s intensive medical care, therapy, and school/learning needs. School was not available for him online like it was for neurotypical students. The Free and Appropriate Education (FAPE) did not apply to him at all.

There are many lawsuits now from families like ours outraged at the inequities and lack of education that students like my son received during Covid. We were our son’s caregivers, educators, and entertainers as we remained locked up inside. At the same time, we were also managing care for our elderly parents. In late August of 2020, we knew we would have to bring in some help. Now that we had learned how to teach and meet online, the expectation was that we would resume an aggressive work-from-home schedule. I had managed to get some education services set up for Will online. But the agency said no nurses were available. Our former nurse had been reassigned to another family during our pause, and the company had lost 25% of its workforce to clinics and hospitals managing the hundreds of daily Covid cases in the greater Indianapolis area. But they assured us they would keep trying to find staffing, just as they had for the last 14 years. The promises became a meaningless mantra.

Will ready for bed

I would ask myself, did they really intend to find someone?

Yes, I think they tried. They recruited new hires. They looked at nurse caseloads to see who had open days. But care is triaged; priority is given to patients with greater medical needs and with less help at home or for families with disabled or aging parents or guardians. I was even told by our agency that suburban patients are harder to staff because of the distance from the urban areas where many home health care nurses live. There is also the perception that suburban families are “higher maintenance” and have higher expectations for their child’s caregivers. I found this insulting on multiple levels because all parents love their children and have high expectations for their care, regardless of zip code. Assuming otherwise is discriminatory and inflammatory. I have been protecting and caring for my son for 19 years; I won’t let anyone who isn’t qualified take care of him. A parent of a neurotypical child wouldn’t allow it either.

Will and Dad doing therapy

Yes, I have had unqualified nurses who have harmed my son.

One nurse left him unattended in a vehicle. I could have reported the agency to the police but was told it would make it harder for them to staff us. I knew that was true. At the time, they were considered the best pediatric home health care agency in the area, so I let them handle it internally instead of pursuing charges. They had me painted in a corner. Another nurse broke my son’s ankle. He didn’t strap his feet in correctly on his wheelchair, caught his foot on a curb break and snapped his ankle. I could have forgiven that, but then he tried to cover it up, and my son sat in pain for three hours until we got home.

Sadly, I have more stories I could share. As with any profession, there are good and bad nurses. We have been blessed to have more good than bad nurses, but a bad one can do some very serious damage – to a person’s life, to a family’s trust, to a family’s anxiety about allowing someone else in. And in our son’s case, the good ones too often leave to make more money elsewhere or to care for their own families.

In August of 2020, we finally contacted the one paid caregiver who has helped fill in when there are no nurses. She only worked four hours a day, Monday through Friday. It was all we could afford. She was careful, mostly remaining in her house or ours, and was always double-masked and washed her hands religiously. Still, she had college-age children. Both of her children did get Covid, but somehow, even though she was around them, she did not. Nor did she give it to any of us. A miracle, a God thing, call it what you will.

After we were all vaccinated, everyone breathed easier, and I asked the agency if we could again resume services, but the answer was the same.

Finally, in July of 2021, our agency had one nurse who could come one day a week and some weeks, two days a week. She was very nice and tried hard, but I still had to assist her. Two weeks later, she quit, telling me she had an opportunity to work with a younger patient who does horseback riding therapy and that sounded like more fun to her than working with Will. I said nothing. I just nodded.

Will doesn’t understand why nurses don’t return, nor why they aren’t there. And I can’t explain it to him in any way he can understand. They leave knowing my home, what’s in it, who we are, and with private medical information about my child. Every time, I’m angry and hurt.

I have to be Will’s body, his voice, his emotions. I have had to speak and advocate for him to explain why he is sad, upset, tired, or happy. Every time we are told there is no one to help or that a nurse doesn’t want our son’s case, I feel like pieces of my skin are being stripped off my body. The skin protecting and holding my body together becomes raw, bleeding. And the skin can’t regenerate fast enough to cover the area until it’s stripped again and my bones are exposed.

Will and Grandpa Will in his stander

I’m asked why I don’t quit working and take care of my son full time. Or why not put him in a facility?

But it’s not that simple. My salary covers more than just our out-of-pocket care for him. It contributes to paying all our bills and the things not covered by private insurance or Medicaid.

And because I don’t want to be my son’s nurse. I want to be his mother. I’m a better teacher because of Will, my greatest teacher. I want him home. He’s my child. Would you give your child away? Would you trust a nursing home to take care of your child?

Will and Dad

We have a national health care crisis. We have a national caregiving crisis. I am hearing over and over from families with adult children who have lived successfully in group homes or independently with facilitation but are now moving back home or being removed from institutional care. People like Will are the most vulnerable population, but they are being left behind. Statistics already support how disproportionately medically fragile children and adults die when under a non-family member’s care.

What will happen to Will as my husband and I age? We have no other children and no extended family to care for him. This is a question that all of us in this position ask. And what will happen now? His school classroom doesn’t have enough help to fully support him because, at this writing, the district has 27 special education paraprofessional positions open. We send him to school, but with four wheelchair users in the classroom and only one nurse, learning takes a backseat to the frontline care required.

Will in his stander

I always say to my students that if you are going to critique something, be prepared to argue for a solution. So, I will do the same. Pay nurse educators more. Change the nursing school system to make it easier for interested candidates to gain admission. Pay health care workers more per hour. Let families have a say and a choice in who takes care of their loved ones. With the Aged and Disabled Medicaid waiver we have, we are required to use an LPN, an RN, or a BSN. We can’t hire a home health aide. Ironic, since my husband and I are not medically trained, nor are the private caregivers we hire. We have been trained to care for him. We have trained others. Let me find my own help and use Medicaid dollars allotted to him for those individuals. With the Family Support Waivers (FSW) and Community and Integration and Habilitation Waiver (CIH), families can hire their own help or even pay themselves as caregivers.

Will and Mom

Now that my son is an adult, I can be paid a small amount per hour to care for him, but I can’t choose my own help and have them paid through the 60 hours of nursing care his Medicaid waiver provides him.

If you know of a family like ours, help. Help us. Ask what you can do to give us a break or make our lives easier. We are struggling and hurting.

Our health is declining alongside those we care for. And our children are struggling and hurting. My son is worthy of as much education and care as any child.

My son and families like ours deserve and demand your attention. Come to our homes. See how we live. See what is required. Reach out to me. Let me explain and share more with you. Take this up as a cause and help families like us advocate. And most importantly, move legislation forward that assists families like ours.

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