Client Stories

Stacey: Restoring Competency

Stacey Nelson and Chris HodgsonThe State of North Carolina declared Stacey Nelson incompetent and appointed a public guardian to make decisions for her after an accidental overdose of prescription drugs in 2009. She talked to her guardian repeatedly about getting her competency reinstated. The guardian failed to tell Stacey that she had the right to ask the clerk of court to restore her of competency, and the guardian refused to help Stacey move forward with her request.

In May 2015, when she was seven months pregnant, Stacey suffered domestic violence at the hands of her now-former husband. Despite the incompetency declaration, Stacey was able to have her marriage annulled and to secure a domestic violence protection order – all without any assistance from her guardian.

But then she became worried about her ability to protect her son. “My ex, with his record of domestic violence prior to me and with me… and then with me being incompetent, if the state said I was unfit to take care of him, they could just come in and take him out at any time,” Stacey explained.

Unable to convince her guardian to move ahead with restoration, Stacey called Disability Rights NC. Attorneys Chris Hodgson and Holly Stiles took her case.

“They helped me with getting everything figured out, what needed to be done legally,” Stacey said. “We got all the medical records and everything. I had doctors write character letters and everything. And all my doctors were for me for having my competency.”

In March 2017, Stacey had a hearing before a clerk of court on her motion for restoration. When she explained to the judge how she had gotten out of her marriage and taken action to protect herself and her son, the judge was impressed. Stacey had her competency restored that same day.

“I don’t believe without Chris or Holly that I could have done it on my own,” Stacey said.

SH: Fighting Cuts in Services

This year, we have received a flood of calls from the families of people who benefit from the Innovations Waiver and whose services have been cut. Here’s the story of one of our clients.

SH is a 29-year-old woman who suffered a traumatic brain injury as a child. She was getting 84 hours of services a week, which enabled her to live safely at home and engage in her community.

Then her LME/MCO, Vaya Health, cut her hours to 78 hours per week and informed her family of its intention to cut her hours more in the coming years. Her parents appealed, and the case landed before an Administrative Law Judge.

Nothing about SH’s condition, living situation, or needs had changed. So how did Vaya justify the cuts? It couldn’t. In court, Vaya’s psychologist testified that 78 hours was the maximum number he would approve, regardless of the needs of the individual. He could not cite any standards or clinical guidelines to explain how he came up with the 78-hour cap—the number appeared to be arbitrary.

The Administrative Law Judge ruled in SH’s favor, saying that Vaya had violated her due process rights. Medicaid decisions must be made using clear standards that the average person can understand. An individual who wants to challenge a decision needs to be able to access and understand the standards used to make that decision. Because Vaya did not have such standards, it violated SH’s rights.

This case was part of Disability Rights NC’s long-term goal of requiring all of the state’s LME/MCOs to provide individuals with the services and supports they need to live and participate in their communities. People with disabilities have the right to live as independently as possible in the community of their choice. Making sure they have the services they need is a fundamental part of enforcing that right.

Bradley: Holding Duke University Accountable

Bradley Elmendorf chose to attend Duke University because the disability services staff assured him that Duke had experience accommodating students with dyslexia. The staff were confident about their ability to provide him with alternative formats of all of his reading assignments.

But once he arrived on campus, Bradley did not receive the accommodations he required. He had to drop, withdraw from, and take incompletes in many of his courses. When he filed a complaint with Duke’s internal Office of Institutional Equity, the Divinity School told him he would lose his scholarship if he did not withdraw his grievance. Ultimately, Bradley had to change degree programs in order to get the accommodations he needed. He graduated with a Master of Arts in Christian Studies in 2014. 

Disability Rights NC filed a lawsuit against Duke University for discriminating against Bradley, and we came to a settlement agreement. Under the settlement, Duke agreed to provide additional training to its disability services staff and liaisons to enhance the effectiveness of student accommodations. The university also agreed to forge a connection between the disability services office and IT staff to ensure that technical issues related to the provision of accommodations are resolved quickly. Finally, Duke promised to publicize the student ombudsman's contact information on the accessibility services website. Though not a component of the settlement, Duke also invested in an online program called SensusAccess that rapidly converts inaccessible reading material to an accessible.

Despite all the obstacles Duke placed in his way, Bradley never wavered in his belief in himself and his ability to obtain academic and professional success when properly accommodated for his disability. We congratulate him on this hard-won victory, and look forward to his future accomplishments and contributions to the disability community.


James: Claiming His Rights and Going Home

Our attorneys first met James on a monitoring visit to Broughton Hospital in 2015. James, who is deaf, had been institutionalized for nine months. In the hospital, he felt like a "zombie," walking around in a stupor. "I felt like I was going to die sometimes," he said of that time. "It was awful."

His treatment team said he was ready for discharge, and James wanted to go home. James had lived in the small town of Vale, NC since he was born and, for the past 19 years, he had lived in a mobile home on his family's property. He cherished his privacy and the nearness to his family.

But James' treatment team recommended he be discharged to a group home in Asheville, more than an hour away from his hometown. James objected to this plan, so our attorneys investigated. They found that the treatment team was misinformed about the condition of James' home and his ability to live in the community. They advocated for an inspection of his property. They also connected him to the Transitions to Community Living Initiative, which arranges for services and supports that allow people with disabilities to live in their communities rather than in institutions.

James was discharged to his home, to the delight of his family. He enrolled in a Psychosocial Rehabilitation Program that meets four days a week, and he wants to work to support his independence. One day, he would like to move to a bigger city, where he could meet others who know American Sign Language. But if he does leave his hometown, this time it will be on his own terms.


Cooper: Finding a Path in Culinary Arts

Cooper was 15 years old when his parents first asked Disability Rights NC to help secure the services he needed. Cooper has a diagnosis of autism spectrum and ADHD. His difficulty in managing the stressors of school put him at risk of institutionalization.

Disability Rights NC helped Cooper get basic support services in place. Our attorneys also helped to address bullying in school and to develop and implement an effective Individualized Education Plan (IEP). Within an improved environment, Cooper excelled in his class work, earning high grades and taking early college courses.

However, after high school graduation, numerous holes in the service system sent Cooper into a downward spiral that led to homelessness and joblessness. Through diligent advocacy and coordination with his case manager, Disability Rights NC helped Cooper enroll in the Eliada Students Training for Advancement program in Asheville ( The program provided Cooper with a safe and stable place to live, extensive life skills training, culinary training, and invaluable support of caring mentors. Cooper is now looking forward to a bright future in the culinary world.


Natishia: Demanding ADA Compliance

Natishia Sanderson is deaf. When she went to the dental office of Bruce Tripp, DSS, PA, she asked for a sign language interpreter. Dr. Tripp refused, saying she would have to hire her own interpreter or that he would communicate with her in writing. But Natishia had previously seen a dentist without an interpreter, and the communication barrier had resulted in her suffering through unnecessary pain.

Dr. Tripp was in violation of the Americans with Disabilities Act. As a place of public accommodation (a business generally open to the public), his office is required to provide an effective means of communication to patients with disabilities.

But there was a larger problem. Natishia is covered by Medicaid, and under federal regulations, the NC Department of Health and Human Services (the state’s Medicaid agency) must ensure that its providers do not discriminate based on disability. Natishia tried to file a grievance with the NC DHHS, but nothing happened. She tried multiple times to get an adequate response, but all of her efforts were unsuccessful.

Disability Rights NC filed suit against both Dr. Tripp and NC DHHS. In the agreement settling the case, Dr. Tripp paid monetary damages to Natishia. In addition, the agreement required NC DHHS to adopt grievance procedures and to promptly and equitably resolve complaints of disability-based discrimination in the Medicaid program.


Nicholas: Free from 24-Hour Restraint

Nicholas is a young man with autism who lives at the J. Iverson Riddle Developmental Center (JIRDC) in Morganton. He was routinely held in a device called an “ambulatory restraint”—a leather belt attached to two leather wrist cuffs that was used to restrict the range of motion of Nicholas’ arms. He was kept in this device 24 hours a day for 13 consecutive days, including while he showered and slept. He was forced to wear at least the belt portion of the device for 157 days in a row.

Disability Rights NC made multiple attempts to address the matter with staff from both JIRDC and the NC Department of Health and Human Services. When that didn’t work, we filed a legal complaint against JIRDC and DHHS for violating the young man’s rights under the US Constitution.

The parties reached a settlement agreement that requires DHHS to develop and implement policies at all three state-operated developmental disability centers:

Prohibit the use of a restraint device on an individual who is sleeping;

Require staff to release an individual from a restraint device to eat, shower, and use the toilet; and

Require staff to release an individual from a restraint device as soon as the likelihood of immediate harm has ended.

The settlement also requires DHHS to provide training to its staff on federal and state legal requirements for the use of restraint.


Bethany: Empowering an Advocate

Disability Rights NC attorney Kristine Sullivan first met Bethany Smith at Cherry Hospital. As a member of our Investigations and Monitoring Unit, Kristine visits hospitals and other facilities that treat people with disabilities. She looks for signs of abuse and neglect and advocates for appropriate remedies when patients’ rights have been violated.

Bethany was at Cherry Hospital undergoing treatment for behaviors related to childhood trauma. She struggled with self-injury and an eating disorder. She had been admitted to mental health facilities several times during her adolescence and was now at Cherry for what would be a two-year stay.

Kristine educated Bethany about her rights. So, when Bethany was restrained improperly at a different hospital, she knew to call Kristine. Federal law prohibits the use of restraint on patients in psychiatric hospitals unless their behavior puts themselves or others in danger. When Bethany told Kristine about the incident, Disability Rights NC launched an investigation.

Disability Rights NC submitted a complaint to the Division of Health Service Regulation, which found deficits in the hospital’s training and procedures, particularly around the use of restraints. The agency determined that excessive force had been used in the incident involving Bethany. The Centers for Medicare and Medicaid Services notified the hospital that it must improve its policies and procedures to continue receiving federal funding.

When Bethany visited the hospital again for a medical condition, she was pleased to see improvements. She did not see anyone restrained while she was there, and there was a big poster about patient rights on the wall near where the improper restraint had happened. “It was taller than me,” she laughed.

Bethany is now a student at Pitt Community College. She shares an apartment with two young women, hits the books, catches her favorite shows, and dyes her hair interesting colors. She looks forward to getting a post-secondary degree and beginning a career as a patient advocate. She is driven to educate others about the experience of being institutionalized, and is writing a book. “I’m not going to be able to get rid of all the ignorance, but one of my goals is to raise awareness and get rid of stigma,” Bethany said.

In 2016, Disability Rights NC awarded Bethany the Champion of Equality and Justice Award for being an advocate determined to use her experience to educate and end the stigma of living with a mental illness.


Thomas: Getting His Degree

Thomas has a learning disability that makes it difficult for him to process written language. In high school, his learning disability prevented him from succeeding in a foreign language class, so his IEP team substituted other classes.

Thomas enrolled in the University of North Carolina–Wilmington. As he was finishing up his film degree, he asked the disability services office to waive his foreign language requirement. He was told a student generally had to fail a language class four or five times to be excused from the requirement. The school asked for a recent evaluation and proof of disability. But after reviewing the documentation, a UNC-W disability services staff member denied his request for a waiver without explanation or avenue for appeal.

Thomas called Disability Rights NC for help. One of our attorneys gave Thomas recommendations on how to navigate the process and continue to pursue his request for a waiver. Thanks to his persistence, another administrator told Thomas that replacing the foreign language courses with alternative courses might be possible.

After jumping through a couple more hoops, Thomas finally got the course substitution approved. It turned out that two of the classes he had already taken would give him the required credits. He had already earned his degree!


Cindie: Accessing Higher Education

Cindie Steeber is deaf and communicates primarily through American Sign Language (ASL) interpreters. She is pursuing a criminal justice degree at a community college to increase her employment opportunities. But she was frustrated with the quality and consistency of the ASL interpreters provided to her by the college, some of whom were students still taking sign language classes. So she called Disability Rights NC.

We filed a complaint with the US Department of Education Office for Civil Rights on Cindie’s behalf. That office mediated an Early Complaint Resolution, under which the college agreed to improve its interpreter services and allow Cindie to retake classes.

Cindie let us know that the situation had significant improved. “I can’t wait to graduate -- that makes me smile – and put on that cap and gown and be queen for the day,” she said.


Shelly: Securing Much-needed Medicaid Coverage

Shelly Stephens is a disability advocate who has quadriplegia. Because she was earning income, the NC Department of Health and Human Services refused to allow her to have Medicaid coverage. As a result, Shelly was spending nearly all of her income on personal care services and was struggling to maintain her independence.

Shelly was one of the plaintiffs in a lawsuit Disability Rights NC filed against NC DHHS for failing to make Medicaid available to many workers with disabilities. The Health Coverage for Workers with Disabilities Act allows people with disabilities to work and maintain Medicaid coverage, and it requires DHHS to make that coverage available. But beginning in 2009, NC DHHS suspended implementation of the law and failed to make Medicaid available to workers with disabilities whose incomes exceed 150% of federal poverty.

As a result of our lawsuit, a Superior Court judge ordered DHHS to comply with the law. Now, an individual with a disability is eligible for Medicaid if he or she is between the ages of 16 and 64, is working, and has non-wage income of less than $1437 per month. There is no cap on earned wages.

“Having access to this program will make it possible for me to maintain my independence, and will help so many others who want to work but need to know that their medical needs will be met.” Shelly said.


Patricia: Changing a Discriminatory Policy

Patricia Bordonaro was a teaching assistant who worked with students with disabilities and was an active organizer of the Circle of Friends Club at Clayton High School. She also had vision loss, which meant she couldn’t drive a school bus.

Johnston County Schools had a policy that required all teaching assistants, custodians, and food service workers to be licensed to drive a school bus. Because Patricia couldn’t get such a license, Johnston County fired her. Disability Rights NC filed a lawsuit against the Johnston County Board of Education on behalf of Patricia and all people with disabilities who want to work in the school system but can’t because of this policy.

The Board entered into a settlement agreement with Patricia, paying her the equivalent of two years’ salary. The Board also changed the policy. Now, the district superintendent will examine the number of bus drivers needed by the school system in relation to the number of routes required. Then the superintendent will provide exemptions to the policy, as long as there are a sufficient number of drivers to transport students. In addition, the Board agreed to update its website and materials to make it clear that exemptions to the policy are available.


Melvin: Building a New Life

Melvin was 22 years old when an accident caused him to lose use of his arms and legs. A year later, he was moved to a nursing home hours away from his family and friends. Melvin told us he thought, “This is where I am going to die.” Through the help of an advocate with Disability Rights NC, Melvin found an accessible apartment near his family and pieced together the services necessary for his 24-hour care. He now enjoys seeing his family and friends and participates in community activities.

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