Alzheimer’s patient dies waiting for OCTA disabled transport approval

Alzheimer’s might have stolen Martha Jovita Membrila’s memory, but certainly not her wit.

A new caregiver came to the house, was offered coffee and declined. “I never drank coffee,” the caregiver explained. “I was afraid if I tried it and I really liked it, then I’d want it all the time.”

“Well then,” Membrila shot back, “you’d better never have sex.”

Membrila was born in 1934, in the same adobe room of the Tubac, Arizona, presidio where her own mother was born in 1911. She studied business, met her husband Robert at a dance, and moved to Westminster in 1959 so he could take a job in aerospace. Membrila worked as an administrative officer for the Veterans Administration Hospital in Long Beach and adored her job, and the veterans, and the doctors and nurses who served them. She loved to sing. “She was kind of her own little USO show,” daughter Sandra Robbie of Santa Ana said by email. Once, Membrila even earned her own standing ovation.

This is the story of an 88-year-old woman who needed help getting around in her final days, and of a system that insisted on screening her live and in person rather than by phone or Zoom to determine eligibility, and of the soonest screening appointment that was so many weeks out that it was, sadly, too late.

“We understand we could have and should have done a better job communicating to resolve this issue more quickly,” OCTA spokesman Eric Carpenter said by email.

‘Ya pa que’

After five children and a busy life, Membrila began forgetting. It was about 15 years ago, Robbie said. “I’m retired,” she’d quip. “I don’t need to remember anything anymore.” In Spanish she’d say, “Ya pa que,” essentially, “Why worry now?”

She became part of UC Irvine’s Mind Study, and was lucky not to descend into the anxiety and anger that’s so common with the illness. But in early July, as Membrila stood at the sink to brush her teeth, she suddenly slumped into her seated walker, limp as wet rag, Robbie said. She couldn’t even sit up by herself.

That was the last time she stood unaided.

Robbie immediately made a doctor’s appointment. But Membrila was now completely dependent on a wheelchair and lacked the strength to get in and out of regular vehicles. Robbie started looking into private transportation — not just for the doctors’ appointments, but also for the special outings she still hoped to share with her mom — and was stunned to learn that such transport could cost upwards of $240 a pop.

That’s when Robbie turned to the Orange County Transportation Authority’s ACCESS program for the disabled.

OCTA, like the Southland’s other major transportation agencies, requires mandatory, in-person interviews to ensure folks are truly eligible for ACCESS services. But the next interview appointment was nearly a month away, and doctors’ visits were looming.

“There was no option offered by the OCTA phone representative except to wait,” Robbie said.

It didn’t make sense. COVID-19 has transformed the world into a virtual meeting space. Medical appointments and job interviews happen online. But transportation eligibility interviews couldn’t? And the pandemic continued to be a real threat to the elderly. Did octogenarians really have to haul themselves to in-person interviews when they could log on from the living room?

‘No’

She pressed her points, going from rep to rep to rep, growing ever more frustrated.

The contrast couldn’t have been greater when Membrila’s doctor soon recommended hospice care: Within hours of a home visit they had a hospital bed, wheelchair, pain medication and more.

“Mom was still able to eat, talk, sing and engage with us, so we were hopeful that OCTA ACCESS might allow us some special outings that she might enjoy,”  Robbie said.

The in-person interview was Friday, Aug. 12. As the date approached, though, Membrila was sleeping close to 20 hours a day. On Thursday, Aug. 11, Robbie called OCTA again to see if there was any other way. A letter or email from her doctor maybe? The hospice nurse? A Zoom interview?

“At each level the answer has been a stiff ‘No.’ That is not their policy. ‘Every applicant must be interviewed in person. The process is equal for all,’ ” Robbie said.

But equality and equity are not the same thing.

“In the world of caring for folks with special needs, one size never fits all,” she said. “The system I encountered felt that it was intended to make the approval process as challenging as possible to screen out fraud. Unfortunately, it also made it extremely difficult for the most vulnerable in our communities to receive the support they needed.”

Magic words

We inquired about the situation with OCTA that afternoon, and the head of ACCESS was soon on the phone with Robbie.

That’s when OCTA’s Jack Garate uttered the magic words: “presumptive approval.” There are some rare instances where a person can get services before the required in-person meeting, he told her — and the plan was made for Robbie to talk with an OCTA rep who could go over all that the following Tuesday or Wednesday.

But on Monday, Aug. 15, Robbie’s mother died. Two days later, she got the call from OCTA.

Robbie explained that it was too late now for her mom, but she didn’t want others to face the same frustrations trying to get ACCESS services. People should know to inquire about “presumptive approval,” and the initial OCTA reps should know to offer it.

“It should not take four hard ‘No’ answers — not including my earlier phone calls when setting up our appointment — and increasing frustration to finally rub the genie from the lamp and get the appropriate assistance that does exist,” Robbie said. “I hope that OCTA ACCESS may be able to find a way that would make the intake and evaluation process feel more supportive.”

Mea culpa

In-person interviews for ACCESS are standard requirements among big transit authorities in California, OCTA’s Carpenter explained. It’s to evaluate a person’s functional abilities and limitations on using the regular bus system, and isn’t automatic for a specific age, diagnosis or disability.

“With more than 28,000 OC ACCESS riders, it’s important that we have people evaluated in-person whenever possible to ensure we have the service available for those who qualify,” he said by email.

But “presumptive eligibility” does indeed exist for folks who need service before that interview can happen. That inquiry must be bumped up the food chain.

“Unfortunately, some key staff members were out of the office when the initial inquiry was made,” he said. “Under our regular practice, this type of inquiry would be elevated to management staff, and that didn’t happen in this case. We are committed to improving our response to other potential OC ACCESS riders with questions and concerns.”

Contactors and staffers have been told that any request for presumptive eligibility should be directed to OC ACCESS management for consideration and a timely response.

And how about those Zoom interviews?

There was a brief time during the height of the pandemic when eligibility was determined with a phone call, Carpenter said, but in-person assessments resumed in March 2022 and that’s where we are. So, no opening for Zoom just yet, but this is the 21st century, and we remain hopeful.

Robbie is something of a social justice warrior, and she remains hopeful, too. You may have seen her award-winning 2002 documentary, “Mendez v. Westminster: For All the Children.” She said that her mom couldn’t remember what happened two minutes ago, but never forgot her children or grandchildren or the friends she made at the VA Hospital. During the COVID-19 pandemic, she’d always remind folks to wear a mask. And she never forgot her favorite singers — Elvis Presley and Pedro Infante — who provided the soundtrack for every breakfast. The last words Robbie heard from her mom were from the refrain from “El Rancho Grande,” which her mom belted out with as much gusto as she could muster.

She’d be quite pleased if their experience made someone else’s less arduous.

Source: Orange County Register