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OKLAHOMA CITY (KFOR) – This legislative session, lawmakers have hired a consulting firm to tackle the developmental disability services waiting list.

The Medicaid Waiver Waiting List is embarrassingly long in Oklahoma.

For the first time ever, the Department of Human Services (DHS) has a plan to eliminate the waiting list that has grown to 13 years long.

For decades, Oklahomans with disabilities were cared for in institutions.

Years ago, the state closed those campuses to serve individuals in homes.

But the state doesn’t allocate enough funding to serve all those needs, and so there’s a waiting list.

Oklahomans like Sarah Garrison, 30, are on the waiting list.

Garrison has cerebral palsy and intellectual disability.

“She was born in 1992 at a time when they were still encouraging people to put children like Sarah in an institution and just forget about her. I said no,” said Sarah’s mother, Barbie Garrison. 

The Garrisons are native Oklahomans who lived in Indiana for 20 years.

In Indiana, state-funded help came over three days a week to bathe and feed and provide personal care needs for Sarah.

Those services were covered because of Sarah’s medicaid waiver.

“(Indiana) managed to take care of their citizens like Sarah. I don’t see why Oklahoma can’t do it.,” Barbie Garrison said. “My biggest disappointment in moving back to Oklahoma has been that they just don’t seem to value families who need these services.”

In Oklahoma, Sarah is on a waiting list 13 years long.

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Barbie Garrison reading to her daughter, Sarah. Photo from KFOR.

Oklahomans who applied for services in November of 2009 are still waiting.

In 2009., Gov. Brad Henry was in his second term; President Barack Obama had just taken office; gas was $2.50 per gallon.

Thousands of Oklahoma families who applied way back then have been waiting years and years.

“We’ve always had a waiting list,” said Disability Law Center advocate, RoseAnn Duplan. “There was a long period of time where there wasn’t funding being allocated to this. That’s how the list began to build up.”

In the past 10 years, the State Legislature has added $1 or $2 million a year each year to help shorten the waiting list. But it’s not enough.

“The department has never been in a position where they believe that total elimination was within reach,” said Samantha Galloway, Deputy Director and Chief of Staff and Operations of Oklahoma Human Services. “And for the first time, we absolutely believe total elimination is within reach this year.”

The DHS has asked the legislature for $21.3 million to eliminate the Medicaid Waiver Waiting List and serve all Oklahoman who quality for services.

Lucy McLaughlin qualifies for services.

She’s been waiting eight years.

Lucy was born with a genetic disorder.

She is blind, physically and intellectually disabled.

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Lucy McLaughlin with her family by her side. Photo from KFOR.

“She’s our second daughter with a rare genetic disease called Glycene Encephalopathy,” said Lucy’s mother, Ryan McLaughlin. “There aren’t many siblings because most choose to terminate. This disease is a terminal disorder.”

The McLaughlin’s first applied for services for Lucy’s big sister, Ellie Kate, in 2008.

Ellie Kate waited years for services.

She died waiting.

The McLaughlins were robbed of a measure of quality of life for their oldest daughter because the waiting list was so profoundly mismanaged.

“Oklahoma is so proud to be pro-life,” McLaughlin said. “I truly believe that if you’re pro-life in the womb then you should be pro-life out of the womb. You can’t just champion the child who is unborn and then leave the child and the family when they’re born and they’re in need of services.”

According to state data, 116 Oklahomans have died waiting for services.

Four years after Ellie Kate’s death, her parents say she still hadn’t been removed from the waiting list, which was maintained on an unsecure Excel spread sheet at the Department of Human Services.

“It’s awful. We’re in the business of meeting people’s needs. We’re in the business of serving people, and so any time that we find out that someone has died while waiting, it’s very sad for us. We have all spent our careers wanting to serve people and sincerely,” said Galloway. 

As of April 15, there are 5,124 Oklahomans on the waiting list.

Last year, DHS hired Liberty Medical to answer the following question: How much would it take to serve every Oklahoman in need?

The five-year, $9.3 million state contract began in May of 2021.

Liberty Medical has been conducting surveys of all Oklahomans on the medicaid waiver waiting list in an effort to identify what services are needed and how much it would cost to fund staff to fulfill those hours.

“We believe it’s about $21.3 million. That’s our ask of the legislature this year for elimination of the waiting list,” said Galloway.

For the first time in state history the goal is total elimination of the waiting list.

The state plan is two-fold: fund services for every Oklahoman waiting and boost pay for care staff.

In recent years, staff positions have been difficult to fill because the pay is low.

“We are really having a hard time competing with the rest of the labor market,” Galloway said. “The people who receive these services need to be able to depend that their staff are going to show up.”

The state hopes to boost pay for workers from $9.50 to $12/hour to sustain the workforce needed to serve Oklahomans with disabilities.

“There are tons of families in a similar situation or in worse situations as us that really need Oklahoma to step up and do right by the least of us,” said Mike McLaughlin. “We’re neighbors. We’re taxpayers. We’re citizens.”

The DHS has never made a budget request of the legislature for more than $2 million a year.

This session, lawmakers are being asked to consider a $21.3 million increase to eliminate the waiting list.

“It is our intent that we end this waiting list and that Oklahoma never be a waiting state again,” Galloway said.

Right now, Liberty Health is trying to assess every applicant on the waiting list.

The company is about halfway through those assessments.

DHS tells us those assessments are vital to eliminating the waiting list.