Disability Rights North Carolina’s Advocacy Targets
Each year, Disability Rights North Carolina adopts a plan to focus its work on the greatest threats to the independence of people with disabilities and the most prevalent violations of disability rights laws. The plan includes a set of advocacy goals that we call Targets.
Because we do not have the resources necessary to address all of the many issues facing people with disabilities, we work with the disability community to identify the legal problems that are the most pressing, widespread or that no one else is equipped to address. Then we develop Targets to address those problems. Targets guide the work of our legal teams and provide the structure within which we spend our limited resources.
Does DRNC Do Work Outside of the Targets?
Yes. Targets are required by some of the federal Protection & Advocacy grants we receive. We also do other kinds of work, such as outreach, training and providing self-advocacy tools to help people with disabilities learn about and enforce their rights. We also engage in public policy advocacy with funds we are able to raise outside our grants.
DRNC’s Advocacy Targets for Fiscal Year 2019
Summary of Advocacy Targets – FY19
Keep students with disabilities in school
Rationale: Students with disabilities are susceptible to being excluded from school when they exhibit challenging behaviors at school, even when those behaviors are related to their disabilities. Students with disabilities are excluded from school more often than students without disabilities through suspensions, homebound placements, modified day schedules, and other exclusionary practices. During the 2015-16 school year, for example, over 22% of the long-term suspensions and over 24% of the short-term suspensions were given to students with disabilities, yet students with disabilities comprise less than 13% of the total student population.
These exclusions often result in months and sometimes years of lost instructional time for students with disabilities. In 2015-16, the average length of a long-term suspension was 76 school days– that’s over 40% of the school year. Students with IEPs are constructively suspended when the IEP team changes their placement from the school setting to “homebound” or to a modified day schedule.
With homebound placement, the student is not allowed to come to school and usually receives two to four hours of instruction per week. With a modified day placement, the student is allowed to come to school for only part of the school day. We are aware of this exclusionary practice as a result of the many calls we receive from parents whose children have been on homebound or modified day schedules for most or all of a given school year.
- Students with disabilities who have received a lengthy homebound placement or modified school schedule who can be served in a less restrictive setting if the school provides an appropriate placement, supports and services.
- Students with disabilities who have received long-term suspensions or multiple short-term suspensions without the benefit of IDEA’s disciplinary safeguards.
- Students with disabilities who are constructively suspended from school because their parents have picked them up from school at the principal’s request for more than 10 days.
Students with disabilities will attend school free from abuse, including abusive interventions
Rationale: Many students with disabilities are subject to abuse at school at times, both as a result of physical and emotional abuse by school staff and use of restrictive interventions, such as seclusion, restraint, and use of aversives. Students with disabilities are particularly vulnerable to mistreatment. One study concluded that one in three children with an identified disability receiving special education services are victims of neglect, physical abuse, or sexual abuse. This problem is compounded by reporting and exclusion issues: many children with disabilities are unable to report abuse because of communication issues related to their disability and attend school in segregated settings that allow the abuse to go undetected and unreported by adults, including separate schools and self-contained classroom settings.
Students with disabilities should be free to attend school in a safe environment, free from traumatic experiences from abuse and abusive interventions. The work of this target will focus on systemic changes in school system practices that prevent abuse and abusive interventions from occurring and remaining undetected.
- Students with disabilities with communication challenges.
- Students with disabilities in separate classrooms and separate schools.
- Students with disabilities with significant behavior challenges.
Advocate for the employment of people with disabilities in competitive and integrated jobs
Rationale: People with disabilities continue to face barriers to finding work and staying on the job. Some choose not to work more or earn higher wages for fear of losing benefits. Sheltered, subminimum wage workers are denied full inclusion in our workforce. Work is the foundation for economic stability. Our clients must have information about work incentives programs and access to competitive employment, free from discrimination.
- People with disabilities who receive vocational training in segregated settings.
- People with disabilities facing employment discrimination or other barriers to employment, including lack of reasonable accommodations or lack of transition services.
- People with disabilities without adequate information about work incentives and other resources to help them find and maintain employment.
Enforce the right of people with disabilities to have equal access to their community
Rationale: People with disabilities are regularly denied the full and equal enjoyment of the services offered by businesses, local municipalities, and the State.
- People with disabilities who have been denied equal access to public places, programs, or services.
- People with disabilities who have been denied accommodations/modifications by colleges and universities.
Addressing North Carolina’s Over-Reliance on Psychiatric Residential Treatment Facilities (PRTFs)
Rationale: Since 2010, the number of PRTF beds in the state has increased to 1,081 – a 119% increase. In addition, some North Carolina children and adolescents are sent to PRTFs in other states. Rather than increasing these institutional beds, North Carolina should be ensuring children are getting the services they need in their communities. Medicaid Transformation and the State’s development of Tailored Plans by 2021 must include community services that will dramatically reduce reliance on PRTFs.
A 2013 report to Congress by then US Secretary of Health and Human Services Kathleen Sebelius detailed a five-year Congressionally-mandated Demonstration project to determine whether children and adolescents could be better served in the community through Medicaid Waiver services than in PRTFs. That study had two findings: 1) “Children and youth generally maintained or improved their functional status when receiving services in the community”; and 2) “Waiver services cost about a third (32 percent) of comparable services provided in PRTFs.” In simpler terms, the children in the Demonstration Project fared better or the same when receiving the right services in the community, and those services saved 68 percent compared to the cost of PRTFs.
Many children and adolescents in NC’s PRTFs cycle in and out of psychiatric hospitals, PRTFs and the community. Through our monitoring work at Disability Rights NC, we have seen children who have cycled through numerous PRTFs throughout the state, often times far away from their families and other natural supports for weeks, months and even more than a year. We know through our monitoring efforts and regulatory surveys that some children are abused and neglected in some of these settings. In some PRTFs, trauma histories are under-recognized and not addressed, thereby perpetuating the underlying trauma rather than treating it. PRTFs are not simply costly from a financial standpoint; they can be physically and emotionally costly, potentially setting up generations of North Carolina’s children and adolescents for a lifetime of misdiagnoses and mistreatment.
This Target proposes to reduce NC’s reliance on these institutional settings, by developing and making available information to policy makers and the public that will demonstrate the need to shift resources back to the community for our youth.
- Students with disabilities who are under the age of 18 and residing in a PRTF.
Reduce unnecessary institutionalization of individuals with disabilities and advance home and community based healthcare services and supports
Rationale: The current health and human services system is biased towards institutionalization over home and community-based services. Often, people with disabilities who could successfully live in the community with sufficient services and supports are stuck in institutional settings. Others, currently living in the community are put at risk of unnecessary institutionalization and segregation due to cost-cutting measures and a flawed implementation of the service delivery system. This system violates the rights of individuals with disabilities to receive services in the least restrictive environment under the Americans with Disabilities Act and the Olmsteaddecision. Additionally, the State fails to comply with federal Medicaid law regarding the Early and periodic Screening, Diagnostic, and Treatment provisions of Title XIX of the Social Security Act (Medicaid Act).
This target will take a holistic approach to address these issues to reduce institutionalization, promote community integration, and promote access to medically necessary services so that adults and children with disabilities live where they want and have the services needed to live a fulfilled and integrated life.
- Adults and children with disabilities in institutions who could be more appropriately served in home and community-based settings.
- Adults and children with disabilities in integrated settings whose rights to community-based services have been denied.
- Adults and children with disabilities who face an increased risk of institutionalization because of inadequate home and community based services systems.
- People without adequate information to enforce their rights to transition out into the community and receive needed health care services.
Increase access to accessible, affordable housing for people with disabilities in the communities of their choice
Rationale: Disability Rights NC receives numerous calls from individuals who are being discriminated against in housing due to disability. They are living in homes that are not accessible for their needs, or simply cannot find accessible, affordable housing that would allow them to transition to living independently in the community of their choice. Disability Rights NC is committed to increasing access to housing in order for people with disabilities to live independently in the community and ensuring that individuals with disabilities have full use and enjoyment of their homes. Disability Rights NC will utilize Protection and Advocacy tools including targeted individual representation, education and training, and systemic advocacy to increase access to and funding for safe, affordable, accessible housing.
- People with disabilities who have been denied equal access to fair housing.
- People with disabilities who want to live in safe and accessible housing in communities of their choice.
Monitor Jail Deaths, Advocate for Improved Treatment, Advocate for Improved Jail Rules Including Mandatory Suicide Prevention Programs
Rationale: Jails are neither designed nor funded to provide mental health treatment, yet with the erosion of public mental health services they have increasingly become de facto mental health facilities.
Recently, two people died in N.C. Jails after they were placed in single cells to prevent self injury; one used toilet paper to suffocate himself using a blanket to shield his actions from a camera (December 30, 2017), and the other hung himself in the “watch” cell when officers failed to conduct the required 15-minute observation (January 14, 2018). To date in 2018, 5 people have died by suicide in our jails (Mecklenburg, Columbus, Wake, Watauga and Harnett). Advocacy is needed to ensure Jail Administrators appropriately respond to an inmate in a mental health crisis.
Updates to the North Carolina Jail Regulations are currently under consideration by N.C. DHHS. Among the proposals are mental health and I/DD screening and treatment and mandatory suicide prevention programs. These updates are critical to improving the treatment of people with disabilities who become incarcerated in our local Jails. Advocacy will be need to press the proposals through the Rule Making Process.
There are few organizations monitoring conditions in our N.C. Jails; Disability Rights NC can have a meaningful impact of the quality of care for people with disabilities going forward.
- People with disabilities confined in N.C. Jails.
Ensure appropriate treatment for people with mental health disabilities in North Carolina prisons and enforce the rights of prisoners with disabilities to accommodations required by the ADA
Rationale: There are more North Carolinians with severe mental illness in our prisons and jails than in our psychiatric hospitals. For those with mental illness in prison, the outcome can be harmful. Prisoners with I/DD are often not identified or accommodated, placing them in situations where they are vulnerable to abuse and neglect. Currently there is no routine screening for TBI. Through Protection and Advocacy system monitoring and investigation of abuse and neglect, and by collaborating with other advocacy groups, Disability Rights NC can impact how people with mental health disabilities are identified and treated in our correctional facilities and increase the chances that people can be successful upon release.
Prisoners with disabilities also face discrimination in access to programs and services and suffer hardships additional to the loss of freedom.Through Disability Rights NC’s on-going advocacy in the prison system, we have learned that the prison-ADA system fails to identify and accommodate prisoners with disabilities. Our goal is to remedy the ADA system in N.C. prisons so that inmates with disabilities are no longer discriminated against and are able to access programs and services while in prison and as part of their preparation for successful reentry upon release.
- People with mental health disabilities in prison who are not identified and who are not receiving appropriate treatment.
- People with disabilities in prison who are not receiving accommodations and who are denied equal access to prison programs and services.
Promote the right of self-determination
Rationale: Self-determination is the ability to make decisions and take actions to shape one’s own life. It is one of our most fundamental rights. Guardianship permits an individual, a corporation, or the government to stand in the shoes of a person with a disability and make decisions on their behalf. Guardianship almost always results in the loss of some or all decision-making authority belonging to a person with a disability. Advocating for the right of people with disabilities to self-determination is fundamental to our purpose as the P&A.
- People with disabilities who would like to restore their competency.
- People with disabilities who have public or corporate guardians and would like to live in the community.