He is always smiling in the photos, always happy, often goofy. Kevin DeAnda’s dimples, jokester ways and belly laughs were legendary, as was his ability to recite entire movie scripts, lyrics to the most obscure songs, chapter and verse from books, complex documents, the Bible.
His IQ approached genius level, his mother said.
And yet he could barely find his way home sometimes, could barely understand certain conversations, feelings, his own words.
He could not hold a job, could not understand why people were cruel to him, why it was not OK to hurt himself or others. Despite his frequent discourses on religion, he could not comprehend how God could make anybody suffer as much as he did.
“Life was black and white for him with no gray,” his mother, Lori DeAnda, said. “Processing language, his environment, touch, light, sound, anything external or cognitive was extremely difficult for him on a good day, impossible on an off day.”
Those photos never showed that. They never captured the eight suicide attempts, the hallucinations, the confusion, the rage, the pain, the misunderstandings by so many, even the experts, who could not always agree on how to treat him.
There were many diagnoses, chief among them Asperger syndrome, an assortment of mental illnesses and a severe form of sleep apnea that required he be monitored regularly as he slumbered to ensure he was wearing his “CPAP” breathing mask and not sleeping on his back.
That hourly monitoring, his family says, didn’t happen in the early hours of New Year’s Eve 2008 as Kevin, 25, slept in a supported living home run by New Pathways Inc. in Albuquerque.
He was dead by morning.
An autopsy report listed his death as the result of “complications” of sleep apnea and obesity with mixed prescription drug intoxication.
Lori DeAnda lay the blame for her son’s death on New Pathways and a state-run system that does not, to her mind, adequately monitor those agencies paid to serve the developmentally disabled.
“My son required the highest level of care, but that night, and who knows how many others, he did not receive that,” she said. “These places like New Pathways make a lot of money. They should have had people trained to keep my son safe.”
It is not easy finding meaning in the death of her son, but DeAnda is doing her darnedest.
She and her husband, Victor, and their daughter, Lynelle Sturgeon, filed a wrongful death lawsuit against New Pathways, alleging, among other things, that its staff failed to check on Kevin every hour during the night and could not account for how oxycodone, a painkiller he was not prescribed, was found in Kevin’s system instead of the Valium he was prescribed.
New Pathways denied any wrongdoing, but in December a Bernalillo County jury awarded the DeAndas $899,000 in damages after finding New Pathways negligent and reckless in Kevin’s death.
But DeAnda was not done.
Since Kevin’s death, she has become a vocal advocate for the rights of the developmentally disabled. She is especially focused on seeking changes in the way the state Department of Health oversees agencies such as New Pathways that receive millions of dollars in Medicaid funds for the clients they serve through the developmental disability waiver program, more commonly known as the DD Waiver.
Among her proposals:
⋄ Easier access to more timely information involving violations found against DD Waiver providers. The Health Department posts some of that in its annual Division of Health Improvement reports on its website, but the reports are hard to find and the most recent data are from fiscal year 2009.
⋄ A requirement that agencies keep a client’s medication until the autopsy report is complete. The DeAndas in their lawsuit accused New Pathways of having Kevin’s medications destroyed within a week of his death, making it difficult to prove how the medication mix-up had occurred.
⋄ Consistent, forceful consequences for agencies that repeatedly fail to meet the state safety standards.
⋄ Better information coordination among the nine divisions and six program areas within the Health Department, which employs nearly 4,000 people.
⋄ Family access to state mortality reviews conducted on the deaths of DD Waiver clients. Those reports are now confidential.
I provided a list of DeAnda’s proposals to Department of Health Secretary Catherine Torres this week in the hopes of beginning a conversation on these issues.
Her response: “Representatives from the Department of Health will contact Ms. DeAnda to arrange a meeting and address her concerns.”
Consider Torres on the record for that.
So DeAnda waits.
“I would welcome a call from them and look forward to the possibility of working together toward positive change,” she said.
Days before her son died, DeAnda said, she could tell he had found greater, deeper reasons to smile: He made his first true friend. He made peace with God. He found love, presenting his girlfriend with an engagement ring hours before he went to sleep and stopped breathing.
“I know that he died happy,” she said.
She hopes Kevin would smile at her efforts in his name. She hopes someday she will smile, too.
UpFront is a daily front-page news and opinion column. Comment directly to Joline Gutierrez Krueger at 823-3603, firstname.lastname@example.org or follow her on Twitter @jolinegkg. Go to www.abqjournal.com/letters/new to submit a letter to the editor.
— This article appeared on page A1 of the Albuquerque Journal