If Insurance Denies – Make an Appeal

After I brought Mark home from Western Rehab, the insurance company agreed to pay “day-patient” therapy for three months, which meant I took him Monday through Friday for all day therapy. After three months, they denied the request for continued therapy, stating, “If he is well enough to be home he didn’t need that intense level of therapy.”

I appealed, by calculating and stating the large amount of money saved in nursing care by having him home. I also requested that they send a representative to come to Western Rehab and observe him in therapy. I was sure if they witnessed his level of care and need for therapy they would approve it.

Blue Cross Insurance did send a representative, and after the observation they did extend his therapy for another three months at “day-patient” level.

In June 1992, I had to make another appeal for therapy to continue. “Half-day” therapy was granted, allowing Mark to have speech, physical and occupational therapy once daily.

In August 1992, a third appeal for continued therapy was made. “Out-patient” therapy was granted through the end of the year, allowing therapy three days per week.

It was a fight to keep the therapy going after Mark returned home — but the fight was well worth it. I did make a forth appeal for therapy because we still hoped for more improvement. The forth appeal was denied.

1992 – Mark with his Therapist at Western Rehab

I was grateful for the year of intense therapy. He learned to drink and feed himself; speak more clearly and work his facial muscles into a smile. His cognitive skills improved. He gained enough strength to propel his wheelchair. All big steps in the right direction.

Even though Mark’s rehabilitation was not at the level we had hoped for when it ended, we appreciated the insurance company for extending the therapy benefit three times.

We are so grateful for the knowledge of doctors and therapist’s who helped Mark achieve a better quality of life.

My Mentor

Mark and I bought our first home in March 1981 located in Sandy, Utah. It was friendly neighborhood and we felt welcomed immediately.  We lived in that home for sixteen years and still keep in touch with many of our friends there. Today, I’m writing about two who influenced our lives greatly.

Kay & Nolan Ellett

I don’t remember the first time I met Kay or Nolan Ellett, because they had lived in the neighborhood for many years before we moved there and they were several years older than we were. They had two boys, Jr and Bobby. At first, it didn’t seem we had much in common, but we went to the same church and I knew they were a happy and friendly family. 

Mark and Nolan were both electricians by trade and had been employed by Arco Electric, however not at the same time. They had many co-workers and friends in common. Nolan joined the union and was working for Wasatch Electric. While on the job-site, one day in March, 1986, Nolan moved a board he didn’t realize was covering a hole and stepped into it, falling fifteen feet. That was the first I’d ever heard of a traumatic brain injury.

Nolan was in a coma for a few months. He was first taken to Holy Cross and then to the University of Utah Hospital. In June he was flown to a rehab center in California that specialized in head trauma. Nolan was there for six months, while Kay lived in their trailer close to the rehab center. Jr had just graduated from high school and drove Bobby as often as school and work would permit, to visit their parents in California. Kay and Nolan were back home just in time for Christmas in 1986.

Kay took Nolan everywhere. I’d see them at the grocery store, at church and all the neighborhood social events. Nolan was wheelchair dependent and had little use of his hands. Kay pushed him wherever they went and had to feed him. Nolan rarely spoke, but Kay understood his needs, they had their own way of communicating. Love radiated between them.

I admired Kay’s strength, dedication, perseverance and positive attitude. She always wore a smile. I often thought, I could never be like Kay or do what she does. As much as I respected Kay and Nolan, I felt awkward around them. They were different and I didn’t know what to say or how to act. I would acknowledge them but my interactions were brief because I was uncomfortable . . . before our accident.

After our car accident . . . five years later, Kay became my hero, and mentor. She knew everything I was feeling: my fears, frustrations, worries and hardships. And now, I understood hers and we had everything in common. Kay and Nolan visited us often in the hospital and rehab center. I visited them in their home, learning what I would need to do before bringing Mark home. She called me often to encourage and to listen. She was wise, compassionate and empathetic to our situation.  She always knew just what to say.

Kay took care of Nolan with the support of her two boys for fourteen years, until the day she died of cancer in the year 2000. She was only fifty-three. I was devastated – not only for me, but for Nolan and their family.

It seemed so unfair – until Nolan joined Kay in death five months later. I’m sure those were the longest days of Nolan’s life. Their love was enduring, unconditional and so inspiring. I often imagine how jubilant their reunion was and the joy they feel now – free from physical pain and limitations.

Never in my wildest dreams did I imagine I’d be a caregiver – as Kay was. But since I am one, I try to be a caregiver – exactly as Kay was. I will be forever grateful for her example.

Happy Halloween!

Evey’s Story

Knowing other caregivers and their stories gives me strength and encourages me to do better. I enjoy my connection and the inspiration I get from each one. Our circumstances may be different but we share the same concern, love and responsibility for another individual with special needs. I want to share some of these amazing stories on my Sunday posts. My first guest authors are Nate and Cally Johnson.

Written by, Cally Johnson

“On May 31, 2012 our lives dramatically changed for the better.  Our daughter Evey, our fourth child, was born that day with an extremely rare genetic disorder called 17q21.31 micro-deletion syndrome.  It is also known as Koolen-de Vries Syndrome.

When she was born, it was clear that there were aspects of her that were unique.  Her look was not typical, some physical characteristics were cause for concern, and, she neither woke nor ate…nor cried.  But, despite all this – she seemed calm, peaceful, and content.  She didn’t show any signs of pain, and she didn’t seem to complain.

After a difficult first month of trouble breathing and eating, and waking up only rarely, we received the official diagnosis of her rare condition.

There are only 200 reported cases throughout the world of this syndrome.  Essentially, Evey is missing hundreds of genes throughout her 17th chromosome, which, in turn, affects every cell in her body, and how she develops both physically and mentally.

Evey requires constant care and attention.  She receives all of her food through a feeding tube, which begins in her stomach, and deposits food directly into her intestines.  She has had several surgeries to fix her many physical malformations, and will need dozens more throughout her lifetime.

If we had a nickel for every time someone asked us: “How do you do it?” – we would have quite a few dollars, and, we would like to use those dollars for some cupcakes on the days we really need them.  So cupcakes, donuts, and ice cream are a lot of the answer to how we do it.

We give to Evey, because she gives us so much in return.  When we have sleepless night after sleepless night, she smiles at us and we immediately feel her giant spirit, and it feeds our tired souls.  When she requires lengthy hospital stays, we watch all those medical professionals fall in love with her and feed off her joy and happiness.  She always radiates warmth and is never bitter at what life has dealt her.  Beyond that – we’re constantly crossing paths with people whose family members are in even more dire circumstances than ours and Evey’s: people whose family members and friends have never come home from the hospital, requiring constant care; families whose children and friends have come and gone in what seems like the blink of an eye.  For all the challenges and exhaustion, just having Evey with us is a constant reminder of how blessed we are.  And, we are fortunate to be surrounded by family and friends who lift and strengthen us – so, we can make it, for however long the journey.

She is strong, so we are strong.  She is happy, so we are happy.  She never complains, so, why should we?”

Thank you Nate and Cally for sharing your inspiring story.

Playing the game