(If you received a tweet about this page, read the timeline below. Then do the right thing and get Sean Riley the healthcare he deserves, he paid for and he needs. His life depends on you doing the right thing – no lip service; action. You may contact Katie Walters for details at SeanRileyMistreated@yahoo.com . She holds Sean’s POA.)
Updated 3/19/2019 – It’s been a hard year for Sean. He’s home but now he and Katie are fighting with the bureaucrats over home care. An update to the timeline will be added in the next few days. We still need an advocate for Sean!!!
Updated 3/19/2018 with expanded and updated timeline below. You can read the new posting made today with my thoughts on the healthcare and insurance industry abandoning him by clicking here.
Updated 3/9/2018 – as if it weren’t bad enough – Powerback served Sean with a 30 to vacate their facility. Shame on Kaiser Permanente, Powerback, Anthem and Kroger for abandoning Sean. His health has deteriorated seriously in the last week due to the stress of this crisis.
I Stand With Sean Riley, Cheesemonger, Campaign – Round 1
Sean Riley has been my friend since July of 2011. We met in Dallas when Kroger hired the two of us to work as the National Setup Specialists for their partnership with Murray’s Cheese. For three years we spoke weekly, often crossing paths opening Murray’s Cheese Shops in Kroger stores from South Carolina to Seattle to Denver to Ohio, Georgia and many more places in between. We spent lots of time together in New York at Murray’s Cheese on Bleecker Street, learning and eating cheese.
On November 2, 2016 Sean’s life changed forever. Below is the heart-breaking story of what has happened to Sean since that date.
Timeline beginning November 2, 2016
11/2/2016: Sean went into PEA cardiac arrest. CPR was performed by EMTs for over 8 min before they got his heart going and he was transferred to Medical Center of Aurora – South.
11/2/2016-11/4/2016: Sean was put into a medically-induced coma and placed on hypothermia protocol. He began demonstrating what appeared to be seizures. Dr. Graham with Blue Sky Neuro had him transferred to Swedish.
11/4/2016-11/22/2016: Sean was admitted to Swedish’s neuro ICU unit and had a constant EEG for a week where it was determined Sean was not having seizures, but myoclonic jerks. 2 CT scans and 1 MRI did not detect any brain damage. The doctors began reducing the medications and Sean began blinking and responding to questions. The therapy team got him into a cardiac chair so that he could sit up and perform light therapy.
Sean continued having uncontrollable shaking which was diagnosed as Lance Adams Syndrome (a result of his brain injury from oxygen deprivation), so rare that less than 200 persons worldwide have ever been diagnosed with it. Coupled with the Centralized Sleep Apnea, Sean’s condition is perhaps the only person in the universe with both. The medications for each counter-act each other, further complicating his medical care. The doctors walk a razor thin line with his medications – trying to help him without killing him.
11/22/2016-12/28/2016: Sean was transferred to Kindred in Denver to manage his trach and feeding tube. Several times Sean went on an Ativan drip because of the severity of his myoclonic jerking. Dr. Miller tried several medications and ended up on Valium. Sean’s myoclonus was well controlled on 30mg of valium every 4 hours along with other medications.
12/28/2016-3/3/2017: Sean was accepted into Craig Hospital where his new doctor, Dr. Spier, believed that high doses of valium was not a long-term solution. He began reducing the valium and trying other medications. Sean suffered from withdrawals as well as myoclonus. Sean was also given 2 sleep studies where it was discovered that he had centralized sleep apnea and perhaps Ondine’s Curse. Sean learned how to self-propel in a wheelchair.
During this period, Anthem, Sean’s insurance company through Kroger, began trying to deny Sean coverage. The insurance plan Sean had paid into for more than 13 years as an employee of Kroger. Each time, the doctors were successful in keeping Sean’s insurance coverage in effect.
3/3/2017-4/26/2017: Sean was sent to Care Meridian because he was not ready to go home and our home was not accessible. Sean stood and walked the parallel bars for the first time. It was at this time that Anthem began a full court press to deny Sean coverage using the reason of “insufficient progress” Two times Dr. McMillan and Dr. Goldberg were successful in appealing Anthem’s attempts to deny coverage. But not the 3rd.
4/26/2017-4/27/2017: I took Sean home because I couldn’t pay privately at Care Meridian. Anthem sent a home healthcare nurse who refused to sign us up for home healthcare because she didn’t believe Sean could be at home. Her concerns were with Sean’s ventilator and my lack of knowledge on how to operate it. Also, home healthcare would only provide 3 30min visits a week and Sean required a hoyer lift and I was at the house by myself.
5/3/2017: Sean’s friend, Marcella, wrote emails to many at Kroger including CEO Rodney McMullen, Dennis Gibson, President of King Soopers (Division of Kroger), Season Lawrence, Category Manager for Cheese at Kroger (one of Sean’s bosses), Margaret McClure, then Vice President of Deli for Kroger (another of Sean’s bosses), Jessica Adelman, Timothy Massa (Upper management at Kroger) asking ALL of them to help with Sean’s issues with Anthem. She received calls from an HR person whom Marcella feels at worst was less than candid (Think: Lied) with her and at best just shined her, pretending to care when in reality, didn’t give a darn. According to Marcella and based on the actions of this HR person, it appears Marcella’s perceptions were correct – just make Sean go away.
Sean worked for all of the above people. Showing up every day, making Kroger look good to its customers. Little did he realize he was paying into an Insurance Contract with Kroger and Anthem that wasn’t worth the paper it was written on.
5/31/2017: Anthem officially terminated ALL insurance coverage for Sean. Kroger refused to interfere on Sean’s behalf. We enrolled Sean into a Kaiser Permanente plan.
4/27/2017-6/5/2017: Sean was admitted to University Hospital after it was determined it was unsafe for him to be at home. The hospital tried to get him back to Craig after he made progress with their therapy team, but Craig does not accept patients back for a second stay. They were also not successful in getting him admitted back into skilled nursing care because of his Trilogy. The pulmonologists tried Sean on BiPAP S/T where his CO2 levels were trending up. Because of the ventilator issues they decided to send him back to Kindred.
Katie reached out to a movement disorder specialist at Mt Sinai. in New York who has experience with treating Lance Adams Syndrome and he asked to participate in Sean’s care through his doctors. Katie gave the doctor’s name and contact to 3 different doctors at University for weeks and he was not contacted until days before Sean’s discharge where new doctors would take over his care.
6/5/2017-10/16/2017: Sean was sent back to Kindred where he had another sleep study. CPAP was recommended, and Sean was tried on and failed because of his CO2 levels. Sean was getting back on the parallel bars and walking. Then Dr. Miller wanted to see which medications were helping and took him off most of his medications.
After Sean’s myoclonus came back, the doctor put him back on all his meds. Sean went to see Dr. Fisher at the Franklin Kaiser where she wanted Sean to go back on Zonisamide. Sean had a rough few months going on and off medications. Meanwhile, his case manager was not able to find skilled nursing that would accept Sean.
Since Sean was doing so poorly we decided to sign him up for long term care medicaid and get him into long term care. Somehow Kindred or Kaiser heard from Powerback that they could accept Sean with his Trilogy. I was against the idea because Sean had not made any progress in therapy and was in restorative therapy. I was also very nervous because Sean’s respiratory condition is serious and needs to be closely monitored.
10/6/2017. 11:54 am. I called Deb Walsh, Kaiser case manager, because Linda Cassell was on vacation and told her my concerns with Sean going into skilled nursing – that he wasn’t making progress and he only has a 100-day benefit. She didn’t address the 100-day benefit, but she did say Kaiser was problem solving and Sean is still demonstrating a need for skilled care and they understood he wasn’t making progress. Therefore, lack of progress would not affect their coverage and care of Sean
10/9/2017. 3pm. Sean and I had a conference call with Linda Cassell with Kaiser. Megan with Kindred. Andrea with Kaiser. David with Powerback. We discussed the discharge plan that Sean would be at Powerback until his long term medicaid was in place and then would be sent to the Villas at Sunny Acres. I asked in the conference call what I should be doing because Sean had recently been denied SSDI because they stated that they didn’t receive his signed medical authorization. I had already gone down to the social security office and was given new paperwork that I submitted on 10/10/17, but was told it would take at least 3 months. I was told in that call to go ahead and submit the social security paperwork.
10/16/2017- Present: I spoke to Sean’s case manager, Nick, and he was not informed on the discharge plan. He sent a referral to the Villas at Sunny Acres in 11/2017 and they denied admission because of his age and the medications he was on.
1/5/2018 Sean stood onto a walker from his bedside. A couple of days later his OT stopped me in the hall and asked what we were hoping for from Sean’s standing and I told her I wasn’t expecting Sean to run out of here, but I saw it as a positive sign he was getting better. She recommended I try to get him to a facility where they have gait lifts because his myoclonus was unpredictable, and they didn’t feel safe with helping Sean walking. I agreed and let Andrea and Emily know and we began looking into acute rehabs. 4 acute rehabs refused to take Sean because they couldn’t support his ventilator, or they thought his medications should be titrated up before admission to get the most out of therapy.
2/8/2018 I was informed by Sean’s new case manager, Emily, that the new Kaiser case manager, Alicia told her Sean was being denied further coverage. Kaiser did not follow through with the denial, but it opened up the doorway for Sean to be denied again on 2/23/2018 and then again on 3/2/2018.
Kaiser stuck with the 3/2/2018 deadline. We appealed the decision and Sean’s movement disorder specialist sent the appeals board a letter stating Sean needed a safe discharge plan, but it was ignored and the appeal board held up the denial.
Sean was given private pay pricing.
3/2/2018. The administrator at Powerback presented Sean with an invoice for the month of March for Sean’s room and board in the amount of $11,000. In addition to this amount, Sean will be charged for bed and ventilator rentals and prescription drugs. His monthly drugs will exceed $9,000. For each month’s stay at Powerback, Sean is facing more than $20,000 in charges. His long-term disability is nowhere close to being able to cover these costs.
3/9/2018. Powerback presented Sean with a 30-day to vacate notice. They plan to EVICT Sean on 4/8/2018 despite acknowledging that he requires 24/7 care. They will put him in a wheelchair and roll him out to the curb. Within hours of the eviction, Sean will die. Powerback is a division of Genesis HealthCare’s and its CEO is George Hager. I wonder if he is aware of what his facility is doing to Sean. That ultimately, he is holding Sean’s life in his hands.
3/16/2018. Sean’s medications were not properly ordered when he went to private pay. Because the facility did not have a necessary medication, the Kaiser doctor had the nurse give Sean another medication even though she has not physically seen him since he was denied coverage. Sean was very sedated and had been experiencing other symptoms. Katie had Sean transferred to the ER for being overly medicated and needing more oxygen. The ER doctor was advised of Sean’s private pay status from Kaiser and “determined” Sean was not in immediate danger and told Sean to take up his symptoms with Kaiser.
Sean’s shaking has been diagnosed as Lance Adam’s Syndrome which with his Centralized Sleep Apnea and disabilities (because of his brain damage), his case is extremely difficult to “fix”. It is apparent to me that because of the level of skill needed to care for Sean, Kaiser, and previously Anthem, only see the dollars going out with no end in sight. Be that as it may, they had no trouble taking his premiums but when it came time to fulfill their part of the deal, they cut bait.
Not only is it wrong, it is inhumane. Without proper insurance and care, Sean may die and will most certainly face financial ruin.
Shame on Anthem. Shame on Kaiser Permanente.
Now it’s time to do the right thing.
Thanks to all who are Standing With Sean; Sean and Katie thank you with all their love!!! Show more support by “Liking” our Facebook Support Page.
Follow me on:
You must be logged in to post a comment.