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Disability advocate continues her fight

Lori DeAnda carries thick binders filled with documents related to her legislative activism on the rights of the developmentally disabled. At left is a portrait of her son, Kevin, whose death in 2008 inspired her to action. (Dean Hanson/Albuquerque Journal)
Lori DeAnda carries thick binders filled with documents related to her legislative activism on the rights of the developmentally disabled. At left is a portrait of her son, Kevin, whose death in 2008 inspired her to action. (Dean Hanson/Albuquerque Journal)
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A year has passed since Lori DeAnda proclaimed in this column that she wanted a meeting with the honchos at the state Department of Health to share her ideas for improvement. It was another big step into her unexpected role as advocate for the rights of the developmentally disabled.

That’s because five years have passed since her son, Kevin, died, shouldn’t have died, wouldn’t have died, she believes, if the professionals charged with his care had done their job and if New Mexico’s oversight of agencies caring for the developmentally disabled was more workable and transparent.

Kevin DeAnda, 25 and diagnosed with numerous mental illnesses and disabilities, died in 2008 in a supported living home run by New Pathways Inc. in Albuquerque. In 2011, a Bernalillo County jury found New Pathways negligent and reckless in Kevin’s death, agreeing with the DeAndas that staff had failed to check on Kevin every hour during the night as required for his severe sleep apnea and could not account for how oxycodone, a painkiller he was not prescribed, was found in his system instead of the Valium he was supposed to be taking.

Losing Kevin is how Lori DeAnda found her cause.

“Kevin was my root for activism,” said DeAnda, who when not in change-the-world mode is a wife, mother and manager of a dental office. “And I guess now it’s in my blood. My fight is like a tiger mom’s going into gear.”

DeAnda and the other tiger moms — and there are more than you might expect — have tried to make their presence known at the Department of Health, up at the Legislature and within the various groups they have formed across the state. Their fierce and heart-felt activism is an extension of their roles as protectors of children who need more protection than most.

But it hasn’t been easy. And it hasn’t been quick.

In my February 2012 column, DeAnda asked for that meeting with then-Health Department Secretary Catherine Torres to discuss proposals to improve the system for clients of the Developmental Disabilities Waiver program, which uses Medicaid funds to pay for special needs services.

After I conveyed DeAnda’s request to Torres, a staffer emailed back: “Representatives from the Department of Health will contact Ms. DeAnda to arrange a meeting and address her concerns.”

DeAnda was granted what she expected to be a preliminary meeting with Gabrielle Sanchez-Sandoval, a department attorney.

But the meeting with Torres never materialized, despite DeAnda’s frequent calls. Then Torres stepped down in October after a tumultuous 18 months on the job.

About a month later, DeAnda said she received a letter from Gov. Susana Martinez with contact numbers for what was then a Health Department in flux. It was only four weeks ago that Martinez’s new appointee, Retta Ward, took over the helm at the Health Department — just in time for the convening of the Legislature.

“I assume they will be busy with that and that I would have a better chance at getting an appointment after the session is over,” she said. “But as soon as it’s over, I’m calling.”

Secretary Ward, you have been duly notified.

Which is not to say DeAnda is lying low until then. Earlier this month, she helped craft a bill that addresses one of her proposals.

House Bill 557, will allow family members — or “representatives of the estate of a deceased person,” in legislative-speak — to obtain the documents associated with investigations conducted by the state mortality review board. Such a review is conducted upon the death of a person who receives funding through the DD Waiver program and is aimed at identifying what went wrong and what can be done to prevent similar deaths. The report generated by the investigation is confidential, even to the deceased person’s next of kin.

“As a mom, I want that report,” she said. “I want the whole story. I want to lay it all out and decipher for myself what went wrong, who’s full of baloney and who’s telling the truth.”

The bill is being carried by freshman Rep. Elizabeth Thomson, an Albuquerque Democrat, and has been assigned to the House Health, Government and Indian Affairs Committee.

DeAnda knows her fledgling bill is a long shot. Already, she knows the opposition to her bill is gathering steam. And in the scheme of things, she knows her bill is not one of the high profile ones.

Still, she sends out her letters to committee members and asks everybody she can think of to do the same. That’s what tiger moms do. That’s what Kevin’s mother does.

UpFront is a daily front-page news and opinion column. Comment directly to Joline at 823-3603, jkrueger@abqjournal.com or follow her on Twitter @jolinegkg. Go to ABQjournal.com/letters/new to submit a letter to the editor.
— This article appeared on page A1 of the Albuquerque Journal

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