As many of you know, every year DRNC sends out a survey asking North Carolina’s disability community to tell us about the legal issues that are important to you. This year, we received 515 responses from nearly every NC county. We thank each of you for your participation.
Why your participation is important
Your comments help DRNC identify advocacy targets, areas that need the most immediate attention, and help us prioritize and shape our work.
We would like to take this opportunity to share some of what we learned from your responses and why your feedback is so important. Every DRNC team regularly represents the interests of people with disabilities in meetings with community partners, stakeholders, and decision makers. The information you provided will inform the work we do in those settings and our other legal work.
When we are in conversation with you, joining forces to raise awareness and advocate as a community, we can be more effective.
What the survey told us
Written responses overwhelmingly confirmed that access to services remains a number one issue for our community.
I/DD and MH Services
The largest number of written comments were about people with intellectual and developmental disabilities being unable to access the services they need in the community. You identified 3 core problems:
- A lack of community supports and services
- A lack of direct care providers due to low pay
- The long waiting list for the Innovations Waiver (also called the Registry of Unmet Need)
NC relies on the Innovations Waiver as its primary vehicle to deliver home and community-based services for individuals with I/DD. Yet, the number of people on the waiting list grows each year instead of decreasing. When people finally get the waiver, low pay for care providers makes finding stable, reliable staff almost impossible.
How DRNC is working on this problem: I/DD Services
For years, DRNC represented individuals with I/DD in administrative hearings to force the NC Department and of Health and Human Services (DHHS) and the LME/MCOs (the State’s contractors that manage and pay for these services) to authorize necessary services for people with disabilities. While this strategy helped individuals for one authorization year, our work did not bring about long-term benefits for enough people. Also, we couldn’t keep up with the demands of individual representation. We needed to have a bigger longer term impact.
We also wanted to address the State’s and DHHS’s failure to invest in community-based services. Countless times, LME/MCOs recommended Immediate Care Facilities (ICFs) as a solution to people who couldn’t find services in the community because there were no providers or services available.
In May 2017, DRNC filed a lawsuit, Samantha R v N.C. DRNC alleged that NC does not provide enough community-based supports for people with I/DD who prefer to live in their home communities. Instead, they are put into institutions to get the services they need. We also alleged that the long waiting lists for services, and lack of available community services put many people with I/DD at risk for institutionalization.
On February 6, 2020, a judge ruled that NC and NCDHHS violated the NC Persons with Disabilities Protection Act. This law protects people with disabilities from discrimination. The court found that the State and DHHS unnecessarily institutionalizes people with disabilities to provide them services and supports.
Even with the judge’s ruling, we are still waiting for the State and DHHS to change this discriminatory culture and practice. The State’s draft Olmstead Plan doesn’t give us hope that a culture and structural change is coming anytime soon. As of today, the State and DHHS have failed to produce a plan with meaningful measurable goals to reverse their dependence on institutions to provide care and services to individuals with I/DD and other disabilities.
What you can do
The deadline to comment on the draft Olmstead Plan has passed, but we encourage you to send your comments in anyway. You can find information on how to do that on our Olmstead comment page.
Mental Health Services
People with mental health disabilities are not getting the community services and supports they need from the State and DHHS, either. This fact is especially troubling because NC entered into a settlement agreement in 2012 with the U.S. Department of Justice (DOJ) regarding this very problem. The settlement agreement has been extended twice because the state has continually failed to live up to its word.
Your survey responses and comments indicate that the State and DHHS still depend on emergency departments and involuntary commitments for people with mental health disabilities to gain access to supports and services. After almost 10 years, NC is still not in compliance with the settlement.
DRNC will keep working with the DOJ, DHHS, and others to make sure NC completes the work it promised to do to comply with in the settlement agreement. We are also working with other civil and human rights organizations in the state to bring attention to and advocate against the overuse of the inhumane involuntary commitments to provide services to people in crisis.
Housing
You also sent DRNC comments on the state’s lack of affordable and accessible housing. DRNC recognizes the dire housing shortage and supports an increase in affordable housing. We cannot create housing, but we do everything we can advocate for the development of more housing and more accessible housing options for people with disabilities.
There are times when we work to increase housing options for the community. For instance, in 2019, DRNC advocated for (and partnered with) eligible Public Housing Authorities (PHAs) statewide to apply for Mainstream Housing Vouchers. These vouchers provide vital rental assistance to families with disabilities and are intended to prevent homelessness among the disability community. This advocacy work resulted in an award from HUD to NC PHAs of $3,309,348 to fund 582 additional vouchers in North Carolina. North Carolina was the 9th highest awarded state in the country.
Much of our legal advocacy has been focused on preventing people from losing their housing and making sure that their home is accessible using federal and state Fair Housing laws and regulations. We frequently take cases involving landlords refusing to accommodate people with disabilities. Individual case examples include those where people who require emotional support animals were threatened with eviction because of “no pet” policies, or because the tenant has a needed a live-in aide who is not on the lease.
Through negotiation and litigation, we have been able to preserve individuals’ housing and have even recovered money damages for people who were unlawfully evicted. We hope to increase our capacity to take more housing cases in the future.
Education
Several of you commented how hard it is for children to receive the services and supports they need to be successful in school. You also said that school systems continue to push students with disabilities into homebound placements or modified day schedules unnecessarily.
DRNC knows through our monitoring, individual cases, and reviewing data and research, that most students with disabilities in NC on “homebound placement” receive 0 to 4 hours per week of instruction. Additionally, most of them are on homebound for over 40% of the school year. They can be on this “modified day” schedule, missing huge chunks of the school day and their education, for months and years at a time.
This is one of DRNC’s focus areas. We represent students who are receiving little to no education for long periods of time. They might be missing school because of suspension, juvenile court involvement, homebound or modified day placements, or alternative school reassignment. We prioritize taking these cases over others because they have some of the most egregious outcomes.
When we can’t provide individual representation, we offer advice or self-advocacy assistance. These are usually cases that are easier to resolve through informal dispute resolution. We also offer technical assistance to private attorneys representing students with disabilities. Private attorneys may be able to get their fees paid by the school system with a successful claim.
DRNC recognizes that there are many significant Free Appropriate Public Education (FAPE) issues statewide. FAPE is the standard for what students with disabilities are entitled to under federal law. The NC Department of Public Instruction (DPI) is legally required to track progress on student Individualized Education Program (IEP) goals, and evaluate and intervene when effective teaching methods are not in place. We will continue to work on increasing accountability and transparency with respect to student progress statewide. We do this through formal complaints and advocacy to DPI. We welcome information from parents and advocates on these issues and ways to resolve them.
Education Policy Work
In addition to individual representation, DRNC also engages in policy work to advocate against education discrimination. This legislative session, we worked to defeat a proposed bill that would allow principals to give long-term suspension to students for subjective, minor offenses such as “disrespectful” statements and dress-code violations.
We also are trying to get a bill passed to make due process complaints more accessible for parents and students in our state. This bill will eliminate the second tier of review, which comes after the extensive first tier of review by an administrative law judge. The second tier is not statutorily required and increases the expense and delay for parents and students.
We also continue to represent students who were denied appropriate special education services during COVID-related school building closures and hybrid schedules. We consider this a form of school exclusion and encourage you to call us about those claims.
Facilities
Most of the comments regarding facilities were about closing facilities and moving individuals to community-based services. Some comments focused on the dangerous conditions in these facilities.
DRNC focuses on preventing abuse, neglect, and other rights violations in facilities. We use individual complaints to change practices and systems within the facilities. For example, when a resident of a State-operated facility died after being held in a series of face-down restraints, DRNC investigated his death. We then successfully advocated for the State to ban the use of this dangerous restraint technique in all mental health, I/DD and substance use settings. We also identified a Psychiatric Residential Treatment Facility (PRTF) where children were not receiving required court hearings. As a result of DRNC’s advocacy, those hearings are now happening to protect the rights of those kids.
Because of your comments, we have added group homes with Deaf residents to our list of future monitoring projects. If you have other specific populations or types of facilities that you believe need our attention, please reach out!
Employment
Your comments related to employment for people with disabilities focused on higher pay for workers, a need for more training and availability of job coaching, and an overall lack of quality and timely assistance from Vocational Rehabilitation (VR).
DRNC has dedicated extensive resources to challenging discriminatory employment practices. We also monitor employment service providers, and advocate for better employment training services and supports for persons with disabilities.
Based on comments and requests for assistance from our constituents (people with disabilities), DRNC continues to advocate for employment service reforms from NC DHHS. In February 2019, this led to DRNC and DHHS signing a memorandum of understanding to improve the delivery of VR services for North Carolinians with disabilities. As part of this agreement, VR has reformed its policies, procedures, and practices to eliminate segregated work training and support only fully-competitive and integrated settings.
You can learn more about DRNC’s advocacy in our 2019 report, Moving into the Economic Mainstream
We know we have more to do to ensure people with disabilities achieve and maintain competitive wages in non-segregated settings. DRNC continues to engage DHHS and other members of the State to improve services and supports for workers with disabilities.
Currently, along with our coalition partners, DRNC is pushing DHHS to develop concrete actions and meaningful, measurable goals in its Olmstead Plan to improve employment outcomes for disabled people. We hope to have updates about these advocacy efforts in the near future. We also continue to provide individual representation to persons with disabilities who do not receive appropriate support from VR or are otherwise subjected to workplace disability discrimination.
Prisons/Jails
We recognize that the people most affected by prisons and jails are not able to take this survey. Those of you who commented on this issue told us that access to behavior and mental health services in jails and prisons is critical. We regularly monitor these facilities and hear those needs. We have been advocating for critically needed screening, treatment and accommodations for people with behavioral and mental health needs, as well as for people with a traumatic brain injury.
In our June 2020 report on Suicide in NC Jails, DRNC showed that people in jails are four times more likely to report having a disability than the general population. Many more individuals behind bars have unidentified disabilities and lack access to treatment. Incarceration can place them in unsafe conditions with dire consequences.
Also see our four-part blog series on solitary confinement, entitled “Stop Torture in NC Prisons.” The use of long-term solitary confinement/restrictive housing in NC Department of Public Safety (DPS) remains high, even though Governor Cooper’s Task Force for Racial Equity in Criminal Justice recommended nearly a year ago (December 2020) that the use of solitary confinement must end for vulnerable populations and that any confinement must be limited to 15 days. Other states as well as prison administrators find they can operate a safe prison without solitary confinement, and DRNC is working for that day to become a reality in N.C.
We continue to monitor facilities and advocate for screening and treatment options. Even during the pandemic when entry into facilities was limited, DRNC was able to monitor conditions in NC prisons through our “COVID in Prison” litigation (NAACP et al v. Cooper et al. and by correspondence and contact with people in prison and their families.
COVID has reduced and postponed some of the limited treatment options in prison, which is concerning. We will continue to engage with DPS, alongside other advocacy groups, to advocate for increased treatment options and bring to light other reforms needed in the prison system.
Amicus Activity
Another way that DRNC advocates and defends the rights of people with disabilities in NC is to participate in cases as a “friend of the court,” amicus curiae. This May, we filed briefs in three criminal cases involving defendants who were juveniles at the time they committed serious offenses, for which they were given extremely long sentences tantamount to life without parole.
The US Supreme Court has long held that sentencing of juveniles must take into account the fact that children are different from adults in terms of their brain development, and has banned the use of automatic life without parole in sentencing juveniles. Our amicus addresses the high prevalence of trauma histories among children in the juvenile justice system. Working with the National Association of Social Workers, including their NC Chapter, and the Center for Child and Family Health, we provided the Court with clinical research regarding the effects of trauma – and especially Adverse Childhood Experiences (ACEs) – on culpability and longevity.
Self-Determination
Your comments also indicated that the overuse of guardianship to support individuals with disabilities remains a serious problem. The autonomy of people with disabilities is an important part of DRNC’s mission. Adult guardianship is only suitable for people who cannot make their own choices or tell others what they want. We are working to prevent and end guardianships that are not needed and keep guardianships from being overly restrictive. To that end, DRNC is active in Rethinking Guardianship, NC’s WINGS, and encourages anyone who is interested in these issues to get involved.
Outreach
We asked you how DRNC can better serve people of color and the LGBTQ+ community. You told us that you would like to see the following:
- Increased services to low-income, Black, Indigenous, People of Color (BIPOC), and the LGBTQ+ community through targeted marketing campaigns, increased collaborations with other civil rights organizations, faith-based organizations, and local community leaders.
- Increased mental health advocacy.
- Greater focus on the intersectionality of disability with other protected classes.
- Increased advocacy in the areas of housing and homelessness/houselessness.
- Increased diversity on our board and staff.
- More accessible materials, including increased Spanish language materials.
- Increased presence in the community, particularly in rural areas of the state and in BIPOC communities.
We agree. In June 2020, DRNC declared that it would fight to end racial oppression and make equal justice a reality. We pledged to redouble our efforts in solidarity with those who seek to dismantle institutionalized racism and demand social justice. In October 2020, we restructured the organization to increase diversity and our board. As part of our reorganization, DRNC created a Director of Constituent Services position. The new position is focused on increasing services to underserved populations and harder-to-reach communities.
DRNC has also been engaged in trainings and conversations throughout the last 18 months related to diversity, equity, and inclusion as well as the intersectionality of disability with other protected characteristics, such as ethnicity, sex, age, religion, and gender expression. We are aware that our pledge and current DEI work has implications for our targets and case acceptance criteria. DRNC remains dedicated to an anti-racist, just society.
This year, we began strategic planning to help establish priorities, focus our energy and resources, improve operations, ensure that staff, board members, and community members reach agreement around intended outcomes for people with disabilities, and assess and adjust our direction in response to the changing environment. We will be incorporating your suggestions into our plan.
DRNC’s current outreach projects
- Project ACCESS (All Communities Count Equitably for Safety and Support): Part of a statewide COVID-19 vaccine initiative Disability Rights NC (DRNC) launched with financial support from the US Administration on Community Living, the NC Council on Developmental Disabilities and the UNC Carolina Institute for Developmental Disabilities. Project ACCESS collaborates with local partners to boost access to vaccines for disabled households in communities with low vaccination rates, with a particular focus on equity.
- Project Eviction Prevention (PEP): In August, the US Supreme Court overturned the CDC’s eviction moratorium, allowing landlords to resume evicting tenants for nonpayment of rent. DRNC knew those evicted tenants were significantly more likely to be disabled and BIPOC. Launched in collaboration with law school volunteers and NC’s Office of Recovery and Resiliency (NCORR), the goal of PEP is to prevent homelessness and help people with disabilities remain in their homes by connecting them with available rental assistance and through advocacy.
We thank you again for your participation and comments to our survey and look forward to your continued feedback as you help shape our ongoing work.