Mom waits two plus years for support services for daughter with intellectual disability

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A Scott County, Virginia woman says she’s been waiting more than two years for state funds to help support her daughter with intellectual disabilities.

In 2012, the state of Virginia agreed to bolster community-based services for more than 5 thousand individuals with intellectual and developmental disabilities through Medicaid waivers and family supports. It was part of an effort to keep this population out of institutional care.

This followed an investigation by the Department of Justice’s Civil Rights Division that found the state failed to provide adequate community support services for the intellectually and developmentally disabled, a violation of the Americans with Disabilities Act. 

Years later, Carolee Bose is among those who believe the program’s current resources still aren’t meeting the needs of this vulnerable population. 

Bose’s daughter Kymberly is 33 years old.

Bose said Kymberly’s intellectual disability, medical history and mental health issues make it impossible for her to function independently.

“Her IQ is only 63, which is comparable probably to the thought process of an eight to ten-year-old child,” said Bose.”I can’t stay home with her. I have to work, I have to feed the kids, I have to pay the bills.” 

Bose said a lack of adequate supervision for Kymberly has proven a safety risk.

She said she’s been hospitalized three times recently for forgetting to take her medication. “She has nobody to help her and watch her. She doesn’t listen to her younger siblings. It’s not their responsibility in the first place,” she said. 

That’s why Bose applied for a state waiver to help pay for in-home support services.

She estimated they would cost her 30 thousand dollars a year out-of-pocket.

She said she’s been waiting to be approved for more than two years. 

“I don’t understand why there’s a several year wait, especially with the extent of her problems she should be at the top of the list for her safety,” said Bose. 

According to Regina Lawson, the developmental services director for Frontier Health in Southwest Virginia, wait times for waivers are a common problem. 

She said the state recently allocated funds for nearly one thousand additional slots, effective in 2020. She said that’s not even close to covering the 35 hundred people currently labeled “high priority” statewide on the waitlist. 

Lawson said more than 13 thousand people have applied for a waiver overall. 

“So that’s why it’s hard to get a slot,” said Lawson. “Everybody that’s a priority is kind of competing against everybody else.”  

She described this backlog as a symptom of ‘growing pains’ amid a push by the state to close expensive institutions in favor of community-based care.

“We want to be able to get people out of institutional places where they’re kind of segregated, they’re not living out in the community with other people,” said Lawson. “But the issue with all of that is the way that the state manages the slot system.” 

She said Southwest Virginia has a low rate of high priority cases compared to more populated pockets of the state.

Lawson said the state allocates additional slots to regions based on the concentration of these cases. 

That means, even when lawmakers do fund additional slots, rural areas rarely benefit, according to Lawson. 

She said the state should invest substantial resources to fund additional waivers so that people like Kymberly can continue to be cared for in their homes.  

“She deserves to color, she deserves to go with mom to the park. She doesn’t deserve to be locked up,” said Bose. “I’m afraid of what would happen to her. No parent wants to put their kid with strangers.”

Lawson said, unless lawmakers fund additional slots, the only other way they’re made available in the region is if someone moves, dies or opts for institutional care. 

Lawson said a few of slots opened up recently, meaning Kymberly will finally be approved. 

The state Department of Behavioral Health and Developmental Services has yet to return News Channel 11’s request for comment. 

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