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Samantha’s Story

Samantha R on the couch with a protective helmet
Samantha R on her couch

Dana and Tim Rhoney’s beautiful daughter Samantha was just 27 when Samantha was admitted to J. Iverson Riddle Developmental Center, a sprawling 285-bed state-operated institution in the North Carolina foothills.

An energetic, petite young woman with an intellectual disability, a movement disorder and other disabilities, Samantha requires continuous supervision and care. She lived at home with her parents in nearby Hickory until her managed care organization (MCO), Partners Health Management, started cutting her services, denying higher rates of pay for the workers who provided her specialized care, and refusing to allow Samantha’s parents to supplement her care when workers couldn’t be found.

The cuts were part of a process the MCO called “fading,” an effort to save money. The notion was that someone could get rehabilitation services, and once stabilized, the services could be “faded.” But for people with permanent developmental disabilities like Samantha, reducing services is not only unrealistic, it is dangerous.

The Rhoneys worried about their ability to keep their daughter safe at home. They loved seeing her happy, playing the keyboard and enjoying all kinds of music, dancing to her favorite songs and music videos. They took her to restaurants, water parks, and concerts, and made sure she had her favorite foods and drinks when she wanted them: cheese, bologna, pizza, sweet tea, and Sundrop.

Dana’s brother was born with disabilities, and the doctors told her parents they should put him in an institution at birth.  No way, they said. Sixty-three years later, he still lives with the family today.

Determined to keep Samantha at home with them, the Rhoneys appealed the cuts and denials. Tim appeared in court against the MCO’s attorney, and lost.

“It still bothers me today,” Tim said. “I kept telling them she’s going to have to go to an institution, and they just didn’t care…The whole system is just messed up.”

And, as Tim noted, keeping Samantha at home “would have been so much less expensive than in the institution itself.”

But the story doesn’t end there. The Rhoneys did not give up. It took seven years, a lot of worry, a lot of tears, a lot of prayer, and a lawsuit for Samantha to move out of the Riddle Center, but she did – only recently. She was excited to move into a home where she has the help she needs and lives in the community. She still goes to the Riddle Center every week, since it also houses a day program.

The Rhoneys are thrilled and said Samantha is too. Her bedroom is comfortable and decorated as she likes, with her favorite Cabbage Patch dolls.

They are also thrilled the judge’s ruling in the lawsuit will help other people like Samantha, potentially thousands of people who are institutionalized or at risk of institutionalization because the state refuses to make sure they can get the services they need to stay in their communities. The judge in the case said the state must follow the law and provide alternatives to institutionalization.

“I just want people to know you can fight,” said Dana. “You can. You can. You can.”

Lawyers with Disability Rights NC (DRNC) filed the lawsuit in 2017 along with lawyers with The Barbara McDowell Foundation and Faegre Drinker Biddle & Reath, LLP. The pleadings DRNC filed in the case outline the many times and ways the state was advised and even warned it needed to comply with the law and give disabled people services if they risked institutionalization and wanted to remain in their homes and communities.

But it is the experiences of the people that really tell the story. In Samantha’s case, even the paperwork is heartbreaking.

When Dana signed and dated the papers for Samantha’s admission to the Riddle Center in January 2015, she wrote below her signature these pained words: “We have no choice but to sign.”

For his part, Tim wrote an addendum to the admission paperwork and required that it be included so the record would reflect this was not their choice for their daughter:

“Samantha’s behaviors have not gotten worse. The reason the guardians are requesting this placement is Partners’ refusal to approve the proper level of service in her natural home. Therefore she must go from the least restrictive setting to the most restrictive setting in order to assure her health and safety. Even though the guardians believe that Samantha can still benefit from the correct level of services provided in her natural home there is no choice but to place her at JIRDC due to the continued denials of requested services by Partners.”

Though the Rhoneys did not “choose” for Samantha to go to the Riddle Center, they said Samantha needed the resources channeled into the facility. They said the state should make those resources available to people in the community to help them stay in their homes – things like day programs, training for caregivers, and respite care.

“That’s where the institution can be helping serve the community,” Tim said. Dana agrees. “The state needs to take the resources they have and use them.”

Dana knows their journey isn’t over and the Rhoneys remain vigilant. “This is by no means completed,” Dana said. “I don’t want anyone to think we’re done. This is just the beginning.”

For now, though, they want people to know about their struggles and their joys, and want Samantha to serve as “a beacon of hope” for other people and families who are struggling. They wish everyone could witness Samantha’s infectious smile and laugh, and know her as they know her.

“I believe in my heart Samantha is in a beautiful home because God is giving her a blessing for all the trials she had to endure. I want people to know Samantha, I want people to see the beautiful side of her,” Dana says, smiling at the thought of her daughter. “And I want the state to wake up and offer support (to others). The state could actually save money if they would offer the support.”

Take Action, Move Forward – Together
Ruling Samantha R., et al. v North Carolina and the NC Department of Health and Human Services
Statement on Samantha R Ruling
Samantha R. Town Hall Recording

 

 

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