Woman unknowingly dropped from DHS waitlist years ago

By Abigail Ogle

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    OKLAHOMA CITY (KOCO) — Thousands of Oklahoma families live with the reality that their child has a severe disability.

But imagine the gut punch when they find out the waitlist to get helpful services from the state is 13 years.

Despite the Legislature throwing $9 million at the problem, 5,800 Oklahomans are still waiting for help – including an OKC family who fell through the cracks.

Thirteen years. It’s the lifespan of a golden retriever. The first day of elementary school through high school graduation. It’s also the time Oklahomans with severe disabilities spend waiting for services from the state. For some, the wait can be even longer.

“We applied. Everything was done. We left and we were told it would be at least 12 years before we’d hear anything or get anything,” said Robert Miller, whose daughter, Bailey, was placed on the Department of Human Services waitlist in 2002.

Fast forward to 2015.

“Bailey’s about to graduate from high school and we’re wondering, what do we do now?” Miller said. “They informed us that we were taken off the list in 2003 because we didn’t reply to a letter.”

Miller said he never received a letter, and DHS couldn’t prove it was sent – or that there even was a letter.

“Turns out, nobody knows what the letter says. The letter, they say, was USPS mail. It wasn’t even certified mail,” Miller said.

DHS told him he should’ve called during the decade-plus wait.

“I was told 12 years. I don’t know why I need to check in,” he said.

His daughter was placed back on the list in 2016, but the clock restarted. It will be 2028 before she can get help. Until then, Miller is paying nearly $800 a month for her day program at Wings. He brings her to work after it closes.

“Wings is from 9 to 4 every day. If you’re a full-time employee, that cuts into your day pretty well,” he said.

A consultant called to check on his family’s needs. Miller said the caller told him she was familiar with others in similar situations. He’s angry, but mostly he just wants to see things improve for families.

“We’ve got to quit hiring consultants and doing surveys and let’s start making progress with our people that need it,” he said.

KOCO 5 Investigates took his concerns to DHS. The agency said it couldn’t comment on specific cases but has heard of families being dropped and never informed.

“We make every effort not to remove somebody from the DDS waiting list. I have heard of that happening in the past. I can tell you, over the last couple of years we have been extremely careful and diligent,” said Beth Scrutchins, who oversees the department that administers the waitlist.

She said DHS sends letters, calls those on the list and has ways of matching names to utility bills and other tricks. Only when DHS is actively working a file, meaning someone’s wait is up, is there a possibility they could be dropped.

“When they’re actually working your application date, we go to great lengths to find you. But if we can’t find you, that could be a reason we close your case. We are committed to serving every single family that’s on the waiting list right now,” she said.

Scrutchins said DHS couldn’t reduce the list in flat budget years, which were the norm before the last few years.

“The demand, though, is always there. Even in years when we don’t receive appropriations, we still have people applying for services – usually anywhere from 30 to 50 families a month,” she said.

DHS is pinning its hopes on greater appropriations and an ongoing survey. Every waitlist family will be called and have their needs assessed. This will give DHS something it has never had: a reliable estimate of how much it would cost to meet every family’s needs.

“We want to end this waiting list and we need to get to the point where we can actually meet people when they need us,” Scrutchins said.

Rep. Cyndi Munson is helping waitlist families. The experience has been eye-opening.

“It’s really frustrating, what we’re doing to families,” the Oklahoma City Democrat said.

She has heard from a number of families, like the Millers, who were dropped from the list.

“I can’t imagine being a parent and waiting for services for over a decade only to be told you should have contacted us,” she said. “Frustrating and stressful and something we really need to address is increasing communication with our families who really need services.”

The problem isn’t just about money. Munson said the list is also a symptom of larger problems such as too few home health workers and lack of reliable information from DHS.

“Of course, we’re all proud of the money we’ve been able to invest,” she said, “but if it’s not addressing the needs and solving the problem we’re trying to solve, I feel like that pride is kind of empty.”

She wrote a bill this year to require DHS to use certified mail when communicating with waitlist families, but the bill was never heard in committee.

As for DHS, it recently hit a waitlist milestone: More people are getting services than waiting for them.

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