This report was submitted in December 2023 in response to Session Law 2023-135, and we offer it to our community as a source of information on the breadth and depth of our work.
This report is a snapshot of Disability Rights North Carolina’s (DRNC’s) efforts to carry out its mission to advance the rights of people with disabilities under federal programs and other funding streams to address serious, often dangerous unmet needs its constituents face day in and out. It is not intended to be an exhaustive report but rather to illustrate the depth and breadth of the organization’s work with and on behalf of disabled North Carolinians.
OUR CONSTITUENTS AND CLIENTS
About one-third of adults in NC have some sort of disability [1]. Add to that, more than 203,000 children in NC are disabled [2]. Every community and the majority of households in the state includes people with disabilities. Disabled people are infants, older adults, professionals, students, parents, employers, workers, health care providers, voters, elected officials, enlisted military, veterans and more. People with disabilities are part of every racial, socio-economic, religious, and political category. Wherever people with disabilities live, work, play, or learn in NC, DRNC has a role to play.
[1] Disability & Health U.S. State Profile Data for North Carolina (Adults 18+ years of age)
[2] Facts About Special Education
WHAT IS A P&A, AND WHY WERE THEY CREATED?
DRNC is the Protection & Advocacy (P&A) organization exclusively focused on the legal advocacy needs of North Carolinians with disabilities. Every US state and territory has a P&A. Together, the 57 P&As comprise the National Disability Rights Network (NDRN). DRNC is the only organization dedicated to advancing and defending the legal rights of people with all types of disabilities, of all ages, across the entire state of NC. Almost all of DRNC’s staff, board, and advisory council members are disabled and/or family members of disabled people. Within the constellation of interests that comprises the disability realm, DRNC’s unique and critical role is to bring the rights and aspirations of disabled people themselves to the fore.
The P&A network was created by Congress in the 1970s to address widespread, inhumane abuse and rampant discrimination against disabled people. Since inception, the P&As have had a lifesaving mandate to identify and remedy abuse, neglect, and exploitation of people with disabilities in congregate facilities. The P&As have necessarily expanded their focus from facilities to the community as disabled people have managed to make progress enforcing their civil right to be included in the mainstream of society, particularly since the enactment of the Americans with Disabilities Act in 1990. The P&As have also expanded from advocating for people with intellectual and developmental disabilities, to people with mental health disabilities, to people with all disability types, including physical, sensory, learning, and traumatic brain injuries.
The P&As provide an invaluable service to people with disabilities and to all state and federal legislators, 100% of whom have disabled constituents. While the P&As continue to find egregious violations against people with disabilities every day, there is no question that the P&A network has vastly improved the lives of people with disabilities and their families, and allowed members of their constituencies to become educated, employed, and contributing members of their communities, where segregation and isolation were once routine.
DRNC’S STRUCTURE
P&A funding includes federal and private funding. DRNC is skilled at complying with the requirements of every funding stream, and DRNC’s independent audits consistently reflect outstanding financial management. Investments in DRNC’s work result in meaningful outcomes.
The federal funding DRNC receives is restricted by the disability group or issue area served. DRNC has grants limited to advocacy for disabled people with brain injuries, assistive technology needs, who have representative payees, and for voting rights advocacy. Consistent with the P&A’s genesis described above, an essential function of the P&As is monitoring places where people with disabilities receive services to prevent abuse and neglect. Another essential service P&As provide is known as “information and referral,” which means responding to the thousands of contacts that come each year from people with disabilities, their family members and advocates, and helping them navigate their way to resolution of the myriad issues DRNC’s constituents encounter. DRNC also devotes significant resources to outreach and education, to ensure disabled people throughout North Carolina understand their rights, available resources, and that DRNC exists to assist them. In addition, foundations and private monies fund specific work projects and activities.
P&As have some flexibility to shape their work in response to the most pressing needs of their constituencies. This work is developed in collaboration with the disability community. DRNC refers to these advocacy goals as “targets”[3] that address longstanding, serious, systemic barriers. DRNC continually gathers data and information through its work and interaction with its client community, supplemented by an annual survey, the results of which are carefully reviewed by the organization’s governing bodies and staff, to secure input and perspectives from key constituents and other stakeholders on how to best use DRNC’s limited resources to address the most pressing legal needs of people with disabilities in NC, and to identify emerging trends. DRNC also conducts multiple virtual and in-person events each year to learn from people with disabilities, their family members, and other stakeholders through outreach and advocacy efforts. DRNC’s specialized legal expertise and broad, deep understanding of the legal and policy landscape at the state and federal levels that affect disabled people help us plan for the years ahead.
[3] Advocacy Targets
COMMUNITY ACCESS
Through its Community Access work, DRNC advocates for people with disabilities to have the same freedoms, choice, and opportunities to live their lives as other community members. DRNC advocates for equal access to community services and programs, fair and integrated jobs, and the right to make important life decisions without unnecessary restrictions. Recent examples of work in this area follow.
- Firefighter receives testing accommodations for the state EMT exam [4]
- North Carolina High School Athletic Association agrees to alter its age-eligibility rule for student athletes with disabilities [5]
- A large private university agrees to hire a consultant and revise its policies and guidelines to provide blind students timely access to accessible course materials
- UNC Health Care ordered to provide healthcare documents to blind patients in accessible formats and agrees to settlement [6]
- Police officers receive workplace accommodations and do not have to undergo illegal medical examinations [7]
- Winston-Salem adopts service animal policy after police forced a blind customer out of Hanes Mall [8]
[4] Firefighter First in NC to Get Accommodations for EMT Exam
[5] DRNC Short Story – Andrew Fevang
[6] Recent Ruling Helps Blind Patients at UNC Health and Blind Patients Receive Settlement from UNC Health Care System
[7] Police Officer Receives $110,000 to Settle ADA Lawsuit
[8] Winston-Salem Service Animal Policy First Among Largest NC Cities
TY’S STORY
DRNC staff found Ty in a psychiatric hospital, in a wheelchair, unable to speak or walk.
DRNC learned Ty couldn’t speak or walk because he was dangerously overmedicated.
After DRNC advocacy, Ty was released and now lives in his community. He is involved in his church, works part-time, and is supported by family and friends.
ACCESSIBLE VOTING
DRNC’s nonpartisan accessible voting work helps ensure people with disabilities are able to vote. One in four people eligible to vote has a disability, but disabled people don’t vote at the same rate as people without disabilities, mainly because of barriers to voting. DRNC’s team engages in the following voting rights advocacy:
- Distributing information on voting rights and how to register to vote through Meals on Wheels programs
- Making and distributing accessible voter guides in multiple formats and languages
- Monitoring curbside voting
- Testing the physical accessibility of voting
- Organizing accessible voting machine monitoring with partners
- Ensuring complaints about accessibility during the voting process are triaged quickly (through DRNC’s hotline 1-888-WeVote2) and that appropriate agencies are notified to address the issues quickly
- Providing disabled voters accurate, reliable information about voting laws
CRIMINAL JUSTICE SYSTEM
People with disabilities are overrepresented at every stage of the criminal process. From law enforcement involvement to courtrooms and especially in NC’s jails and prisons, the state’s system impacts the lives of people with disabilities and their families. Nearly two in five people (38 percent) of people incarcerated have a disability[9]. Unfortunately, many disabled people become entangled in the system as a direct result of unmet needs and systemic discrimination.
DRNC’S ADVOCACY IN THIS AREA HAS INCLUDED:
- ensuring disabled people receive prescription medication in jail;
- helping people with disabilities in prison get necessary accommodations such as hearing aids, ramps, or braille to access programs and services;
- collaborating with other mental health advocacy organizations to improve the identification and treatment of people with disabilities in prisons and jails;
- monitoring and reporting on dangerous conditions for people with disabilities in jails, and advocating for systemic change;
- producing a first-of-its-kind database [10] on projects addressing TBI in criminal settings across the country to identify potential efforts that would benefit North Carolinians;
- seeking implementation of the NCGA-mandated Medicaid suspension in jails and a reduction in reliance on solitary confinement;
- providing advocacy to individuals who have experienced abuse or neglect in prisons; and
- continuing advocacy efforts to improve the state’s approach to capacity restoration for those ruled incapable to proceed to trial.
[9] Disabilities Reported by Prisoners: Survey of Prison Inmates, 2016
[10] Innovative NC Program Launches National TBI Database
OLMSTEAD v. L.C., FAIR HOUSING, AND MEDICAID ENFORCEMENT
In 1999, the US Supreme Court ruled that it is discrimination on the basis of disability to force disabled people to live in a facility to get basic supports for their activities of daily living. Under the Olmstead ruling, forced segregation of people with disabilities is illegal under the Americans with Disabilities Act (ADA).
When people need services because of a disability, the Olmstead decision says that they have the right to choose to receive services in the community. This does not mean that people must leave a facility or congregate care setting – it means that disabled people have a legal right to live in the community if they want to. To have a real choice, community services must be as available and adequate as facility-based care. Short of this equitability, people do not have a real choice. Olmstead means that disabled people don’t have to accept being segregated in facilities to get the help they need.
DRNC helps enforce Olmstead rights. Staff advocate for them to receive home- and community-based services (HCBS), and also help people with disabilities keep their housing using the state and federal Fair Housing Acts.
Examples of this advocacy include:
- An Autistic 14-year-old in the custody of a county Department of Social Services (DSS) was stuck in a hospital psychiatric emergency department for more than 8 months because DSS refused to allow her access to available home and community-based services, even after her MCO found and approved the services. During those 8 months, the child’s condition deteriorated because she did not have any schooling or services appropriate for her disability, including assistive technology for communication. Ultimately, DSS sent this child to an institution in another state. DRNC continued advocating with DSS for discharge to her home and family with appropriate services and supports rather than continued institutionalization. With DRNC’s intervention, she was finally returned to her family with the services and support she needs to be successful, including an Innovations Waiver slot.
- A man with mental health and physical disabilities had his Section 8 voucher improperly terminated by a Public Housing Authority (PHA) because the PHA incorrectly counted his live-in aide’s income towards the client’s available income and disqualified him for the Section 8 subsidy. Neither the client nor his landlord was given notice of the termination, and more than a year went by before his landlord realized that they were not receiving the program subsidy in addition to the rent paid by DRNC’s client. At that point, they notified the tenant that he owed $5,000 in back rent for the missed subsidy payments but elected not to evict him while he tried to work out the issue with the PHA and contacted DRNC for help. DRNC staff requested a hearing with the PHA, and the hearing officer determined that the client’s voucher should be reinstated. They recognized that his live-in aide was permitted to live with him as a reasonable accommodation under the Fair Housing Act. They also agreed that the aide’s income should never have been counted as part of the household income for purposes of the Section 8 voucher program in computing his subsidy payment. Because the PHA had improperly computed the client’s rental payments, based in part on the aide’s income, DRNC’s client is being reimbursed by the PHA for more than $6,000 in over-payments. And he no longer faces eviction.
- DRNC successfully represented a child in a Medicaid appeal after the NC Department of Health and Human Services (DHHS) Division of Health Benefits (DHB) denied him a walk-in tub under the CAP/C waiver program. The CAP/C program is a Medicaid waiver program that helps medically fragile kids live at home with their families instead of in a hospital or other institution. The waiver includes reimbursement for home modifications so families can modify their homes to support the needs specific to their child’s disability. Here, a 12-year-old with Duchenne Muscular Dystrophy was denied a replacement walk-in tub (for a typical step-over tub) so he could access the tub with less parental support. Not only did he want more privacy in bathing without having to rely on parental support, but at 180 pounds, his parents had difficulty lifting him in and out of the tub, creating a safety hazard for all of them. DHB’s position was that replacement tubs were categorically excluded under the CAP/C Waiver and moved to have the family’s appeal dismissed. DRNC intervened to oppose the state’s motion and brought its own summary judgment motion on behalf of the client. DHB had ignored the plain language in the Clinical Coverage Policy and failed to consider language in the Waiver that specifically contemplates replacement tubs. After receiving DRNC’s opposition and motion, DHB reversed its decision before the judge could rule on the motions, and this 12-year-old boy received the walk-in tub.
SAMANTHA’S STORY
“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.”
– Samantha’s Dad
“We have no choice but to sign”
– under Mom’s signature admitting Samantha to an institution
After five years of litigation and a court order, the young woman was able to leave the institution for her own home. “God is giving her a blessing for all the trials she had to endure.”
– Samantha’s Mom
JENNY’S STORY
Jenny entered the foster system as an infant, when DSS learned her birth mom regularly fed her vodka.
Jenny had challenging behaviors and impulse control problems in school, and was in and out of psychiatric hospitals for years. But nobody tested her for fetal alcohol spectrum disorder (FASD).
At age 15, Jenny was involuntarily committed to a “therapeutic” setting that was dangerous and counter-productive. She came home in a worse condition and “shell-shocked,” according to her adoptive mother.
After DRNC advocacy, her MCO tested Jenny for FASD and diagnosed her. Her MCO agreed to support Jenny’s family with respite and in-home assistants trained in FASD. The family is grateful but worries that help arrived too late.
