By Christine O’Connor Trottier
M.J. is a patient at a state psychiatric hospital who is diagnosed with malignant cancer. When she refuses surgery, she is declared incompetent through a provision of the former "lunacy statute" without the benefit of a hearing or notice. An attorney from a special client project files a lawsuit on behalf of M.J.
This special client project was a hospital-based legal assistance program housed at Dorothea Dix Hospital, a regional state psychiatric hospital located in Raleigh. The program was located on a vacant (sometimes described as condemned) ward of the hospital and provided civil legal services to approximately 1,000 indigent patients in a variety of traditional civil legal areas such as consumer, benefits and domestic cases. Legal assistance was also provided in cases relating to the conditions and duration of our clients' confinement at the hospital. As a special project of the Wake County Bar Association in January of 1977, we were called Legal Services for Mental Patients(1). Shortly thereafter our program was re-named Carolina Legal Assistance for the Mentally Handicapped and eventually changed to Carolina Legal Assistance (CLA). Originally funded by the American Bar Association Commission on the Mentally Disabled, CLA affiliated with the confederation known as Legal Services of North Carolina in 1978. Within two years of operation, the original staff of directing attorney, paralegal and secretary doubled in size. CLA also expanded to include a second office located at Broughton Hospital, another state psychiatric hospital located in Morganton.
CLA's goal was to improve the quality of institutional care and services for clients confined at the psychiatric hospitals. A major challenge, however, was that many of the institutional issues were not easily negotiated and resources were unavailable for litigation. The reality and continuing challenge of scarcity of resources was mirrored in the program's first lawsuit, Jordan v. Tolley. When a patient from DDH refused surgery after she was diagnosed with malignant cancer, she was declared incompetent through a provision of the former "lunacy" statute.(2) The statute allowed the state psychiatric hospital director to certify by a notarized "certificate of lunacy" that a patient was incompetent. The Clerk of Court was authorized to issue letters of guardianship solely on the basis of the certificate without notice to the alleged incompetent or the right to a hearing. A suit filed by CLA seeking to enjoin the planned surgery would probably have been lost but for the testimony of the expert witness. Fortunately, the fee for the expert witness was paid by the court following a motion by CLA for an independent psychiatric examination.
The Jordan case generated statewide publicity in the news media, which enhanced CLA’s visibility outside the hospital and promoted public awareness about the rights of persons with disabilities. The aftermath of the litigation inspired CLA staff to re-examine its goals and priorities and its identity as an institutional legal aid program. The benefit of operating a legal aid program at the hospital and receiving free office space, telephone service and office furniture was off-set by the risk of losing its identity as a separate legal aid program. The appearance of this potential conflict exacerbated our clients’ confusion. Often CLA staff was asked, “Aren’t you really just part of the hospital?”
The on-site location of the law office at the state psychiatric hospital was initially viewed by CLA staff as an opportunity to promote change by working within the institution and establishing a credible system for monitoring and evaluating problems at the hospital. Another benefit of maintaining an institutional presence was that CLA expanded its limited resources through a cooperative arrangement with the Patients Advocates Program, which was also located at state psychiatric hospitals and offered investigative, screening and case referral services. Originally a program of volunteer lay advocates, the Patients Advocates Program became part of North Carolina’s Protection and Advocacy agency known as the Governor’s Advocacy Council for Persons with Disabilities, aka GACPD.
As a result of many factors, CLA evolved from a traditional legal services model to a mental disability law reform program whose staff practiced exclusively in the field of mental disability law. We represented children and adults having mental disabilities, which included mental illness (such as schizophrenia) and developmental disabilities (such as mental retardation). We were committed to serving people who, because of the intertwining disadvantages related to disability and poverty, were lost in the institutional and mental health and developmental disability service systems. In 1980, CLA adopted the following mission:
To represent poor persons within the legal system in order for persons to assert their rights and to obtain and exert power to effect institutional change.
Consistent with our mission, CLA adopted goals and priorities that included the following issues:
Right to refuse treatment
Right to treatment on behalf of aggressive adolescents
Access to adolescents
PL 94-142 (the Education for All Handicapped Children Act)
To remain faithful to its mission and priorities and work within the constraints of limited resources, the staff of CLA pursued multi-disciplined legal strategies consisting of public education and training, litigation and public policy advocacy. All of these strategies were required to create the systemic reform needed to change the service delivery systems that were supposed to help our clients.
CLA conducted public education and training about mental disability law reform issues such as guardianship reform and alternatives to guardianship, the special education rights of children with disabilities, the North Carolina Patients’ Rights Act and other laws protecting the rights of persons with mental disabilities. We trained in forums ranging from law schools to treatment facilities and before many different audiences. We trained clients and their families, physicians and other professionals serving our clients. We trained judges, lawyers and other advocates. We also trained ourselves. We learned to convert our public education and training skills into successful projects funded by grants that became crucial to our continued operation and survival in the 1990s.
Co-counseling with private attorneys and the legal services community, CLA filed lawsuits on behalf of those who were dispossessed, disadvantaged and vulnerable by virtue of their disabilities and poverty. CLA filed litigation on behalf of inmates, nursing home patients, aggressive adolescents and adults having mental retardation. Lawsuits filed by CLA mirrored and created trends in the disability civil rights movement. For example, litigation filed on behalf of inmates and co-counseled with two other legal aid programs resulted in consent decrees addressing the procedural rights of inmates when they were involuntarily transferred to mental health facilities and subjected to forced medication.(3)
Sometimes our litigation caused inconvenient outcomes for our program. In 1981 CLA was evicted from our offices in two state psychiatric hospitals after filing a lawsuit against one hospital adolescent program regarding the right of minor patients' access to legal counsel and independent evaluations. After closing the hospital offices, CLA became a nomad of sorts, moving from office building to office building in downtown Raleigh for the next twenty-five years.
Sometimes our litigation was the catalyst for needed legislation. In House et al. v. Hillhaven(4), CLA co-counseled with Pamlico Legal Services to enforce the rights of nursing home patients to quality care and dignity. Litigation was pursued to rectify the state's failure to properly enforce rights and standards of nursing homes. Following three years of litigation, the lawsuit culminated in a settlement agreement establishing the state's responsibilities to regulate nursing homes, document violations, assess financial penalties, and protect nursing home patients' rights to adequate care. For the first time guidelines were also established for licensure staff when performing inspections and investigations in nursing homes and recommending penalties for violations related to patient care. This litigation was also a catalyst for the enactment of legislation establishing a system for imposing penalties by a State Penalty Review Committee against nursing homes for violations of patients' rights.(5)
CLA's public policy initiatives before legislative and administrative rulemaking bodies were inspired by and overlapped with its litigation initiatives. When the Jordan lawsuit was voluntarily dismissed based upon the plaintiff's frail health, following assurance by the Attorney General's Office that the agency would support repeal of the Certificate of Lunacy statute, CLA appeared before the Mental Health Study Commission in 1978 and testified in favor of the General Assembly repealing the statute. After the statute was repealed, CLA embraced other public policy issues relevant to our clients' concerns and consistent with its mission and litigation agenda. For example, CLA testified in support of establishing appropriate treatment and educational programs for aggressive adolescents suffering from serious and multiple disabilities and prohibiting zoning laws and/or restrictive covenants that prevent the establishment of group homes for persons with mental disabilities.
Related to the first issue, when the legislature rejected funding programs for these children during the 1978 legislative session, a class action was filed on October 3, 1979. Five private law firms and two public interest firms, including CLA, filed litigation to compel provision of appropriate education and treatment programs for children suffering from serious emotional, mental or neurological disabilities accompanied by violent or assaultive behavior. This lawsuit was famously known as Willie M and resulted in a new statewide service system for children who had been denied services.(6) Related to the second issue, the North Carolina General Assembly ultimately passed a bill prohibiting the use of zoning and restrictive covenants to block the establishment of group homes for persons with mental disabilities and CLA successfully enforced the statute in several lawsuits which resulted in favorable settlements for our clients.
Thomas S. is a young man lost in the system and warehoused in forty different foster homes and institutions before the age of nineteen. CLA and private co-counsel file a lawsuit on behalf of Thomas, which evolves into a successful class action on behalf of other similarly situated adults having mental retardation, or those treated as such, who were illegally confined in psychiatric facilities and denied appropriate services.(7)
During the 1980s the political landscape for Legal Services funding was in jeopardy because it was targeted for elimination by the Reagan administration. Although efforts to abolish Legal Services failed, Congress reduced Legal Services funding by twenty- five percent and enacted restrictive regulations intended to discourage systemic legal work. CLA survived with legal staff reducing time and taking substantial salary cuts. Staff also became creative and efficient with limited resources by co-counseling with private attorneys and other legal aid programs in connection with class action litigation to achieve systemic reform. As a result of the Willie M. and Thomas S. lawsuits, millions of dollars were leveraged in North Carolina for services for children and adults having mental disabilities. More than 1200 people having mental retardation, who were formerly warehoused by the State in institutions, were living in the community with needed supports as a result of the Thomas S litigation. Class action litigation was pursued by CLA because the federal judiciary was more receptive and private attorneys and legal services programs were available to co-counsel and share the work, risks, and expenses.
During the course of the Thomas S. litigation, CLA co-counseled with Wilmington Legal Services on behalf of Junius Wilson, an African-American man who was deaf, falsely accused of a crime, and illegally incarcerated at a state psychiatric hospital for seventy-six years where he was castrated and forced to work on the hospital farm for decades. Based upon the intervention of Legal Aid and CLA, Mr. Wilson spent the final years of his life in a cottage, received round-the-clock care and was taught how to use sign language. Junius Wilson's case tragically portrays the failures of the mental health and legal systems. Mr. Wilson's case also spotlights the need for the advocacy movement of the deaf, disability and legal services communities.(8)
In September 1993, Patti P., a nineteen-year-old university student, began experiencing some disruptive behavior which continued for two weeks. The university notified Patti that she was being suspended for the remainder of the academic year. The student unsuccessfully appealed the suspension in accordance with school policy. Patti was hospitalized at a private psychiatric clinic, where she was diagnosed as having bipolar manic disorder. Based on her stable psychiatric condition and continued progress with out-patient treatment, Patti's treating professionals recommended that she return to school full time. The university denied Patti's requests to re-enroll for the spring semester 1994 and to change the status of her record reflecting a disciplinary suspension to one reflecting a medical leave. Patti's suspension caused her to lose her student loan as well as her eligibility to defer repayment of the loan. CLA filed suit against the university under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. The court granted Patti a preliminary injunction ordering the university to readmit her for the spring 1994 semester. Rejecting the university's argument that Patti was not otherwise qualified under the ADA or §504 because she was suspended, the court found that Patti's bipolar disorder was under control and she was able to participate in the university program.(9)
During the 1990s CLA enjoyed a few years of stable funding because of its litigation successes that brought attorney fees. These fees together with federal legal services funding allowed CLA to continue to operate representing low-income clients with mental disabilities. But once again our litigation successes produced unanticipated outcomes for the program. When federal restrictions on legal services funding made it impossible to continue our class action litigation, CLA gave up its share of legal services funding beginning in 1996. Two years later, the Fourth Circuit terminated both the Willie M. and Thomas S. lawsuits, which were the program's major source of attorney fee income. Thus, beginning in 1998, CLA was without any stable source of funding and, as a result, lost most of its staff. But we continued.
Following a collaborative campaign among disability advocacy groups, the Commission for Mental Health, Developmental Disabilities and Substance Abuse Services adopts seclusion and restraint rules that would protect people with disabilities from injury and death when subject to seclusion and restraint in state and community facilities. When the State fails to comply with its statutory rulemaking responsibilities in an effort to squash the proposed rules, CLA, in collaboration with the Governor's Advocacy Council for Persons with Disabilities and the disability advocacy community pursue administrative remedies to no avail as the state agency never responds to CLA's administrative petition. On March 11, 2002, CLA, with support from the disability advocacy community, obtains preliminary injunctive relief in Superior Court requiring the State to comply with its statutory and rulemaking responsibility in connection with promulgating seclusion and restraint rules.(10)
CLA continued by repositioning itself and submitting grant applications. We turned to NC IOLTA. Based upon an increase in our IOLTA grant, CLA was in a position to leverage and diversify its funding base to include training and advocacy contracts and projects. Although CLA's work had always emphasized legal strategies in finding solutions to situations where clients' rights were violated, CLA pursued a fourth advocacy strategy – collaboration and coalition-building among local and state-wide groups working toward the goal of advancing the rights of people with mental disabilities.
CLA's long history of doing much with few resources and overcoming challenges succeeded in part because of collaboration with various coalitions and advocacy communities. CLA's accomplishments and ability to survive judicial and political set-backs also reflect the leadership and talent of its Executive Director, Deborah Greenblatt. Deborah was a passionate advocate and accurately described as a "warrior for justice." She was uniquely gifted as an attorney and became a role model for the many legal professionals and disability advocates who knew her. Although Deb loved practicing law, she also nurtured and created coalitions. Deb was a founding partner of the Special Needs Federation, a coalition of advocates who provided a unified voice for children with special education needs. Deb was also the founding parent of the Victims with Disabilities Task Force, another multidisciplinary coalition committed to improving services and ensuring justice for victims with disabilities. She served as the Executive Director for CLA for twenty-five years until her death on June 13, 2005, after a ten-year battle with breast cancer.
CLA was also fortunate to attract a cadre of gifted, dedicated and committed staff persons. They include the following individuals:(11)
Adrienne Allison, Phyllis Alston, Jamia Bachrach, Charnel Baker, Scott Boyles, Ruth Carroll, Lamar Crawford, Bruce Creecy, Joan-Ellen Deck, John Decker, Denita Denny, Christine Di Novo, Annaliese Dolph, Hudson Fuller, Mattie Garrou, Mary Lou Gelblum, Susan Getty, Sharon Hogan, Jennifer Hodgson, Rita Jackson, Johnnyette Jones, Judy Jones, Shenna Jones, Carol Learoyd, Sue Levine, Celia Mansaray, Roger Manus, Alice May, Sam Neequaye, Lou Niemeyer, Ana Nunes, Rene Palmer, Ann Paradis, Barry Parker, Lewis Pitts, Susan Pollitt, Paul Pooley, Lisa Rabon, Kathryn Renfro, John Rittelmeyer, Joan Sabula, Yolander Simmons, Georgia Springer, Gini Tharrington, John Thomas, Debbie Thome (formerly Baggett), Nancy Tice, Christine Trottier (formerly Heinberg), Lisa Varner, Fran Williams, Lisa Williams, Janice Willmott, Leslie Wiseman, Jerry Wooten.
Since becoming independent of legal services funding in 1996 and the dismissal of the Thomas S. and Willie M. litigation in 1998, CLA evolved into an independent, unrestricted program combining statewide policy advocacy, litigation, training, and individual assistance to people with disabilities. The revised mission of CLA was to “create and improve access to appropriate services and treatment for children and adults with mental disabilities through individual and systems advocacy.” And consistent with its mission, CLA increasingly designed projects that were funded through grants in order to maintain an operating budget. Often these projects were partially funded through an IOLTA match grant. One project, The Special Education Juvenile Justice Project, originally funded by the Governor’s Crime Commission in 2002 and sustained by a Z. Smith Reynolds Foundation grant in 2006, reduced long-term suspensions and school dropout among at-risk youth and juveniles with disabilities. This project targets at-risk youth and juveniles with disabilities who are subject to long-term suspensions and/or denied special education services. For the past six years, the project has demonstrated a track record for helping juveniles with disabilities stay in school through legal representation and helping parents and stakeholders (juvenile justice, mental health and child advocates) through public education and training.
Despite many challenges and uncertainties about securing financial stability, CLA continued to provide client services and slowly expand its funding base. Based upon the perseverance and resiliency of staff and board members, CLA remained a valuable resource to North Carolina and its many disability and advocacy communities.
On May 21, 2007, Governor Mike Easley announced the designation of Carolina Legal Assistance as the Protection and Advocacy agency (P&A) for North Carolina, effective July 2, 2007. With that designation, CLA became part of a nationwide network of protection and advocacy systems mandated by federal law. The Governor’s designation of CLA as the state’s P&A represented the culmination of an advocacy campaign of almost twenty years by the disability and legal communities for an independent organization outside of state government to protect the interests of people with disabilities. Before Carolina Legal Assistance was designated as the state’s P&A agency, the Governor’s Advocacy Council for Persons with Disabilities (GACPD) served as North Carolina’s P&A system for thirty years. The GACPD was a division of the Department of Administration and overseen by a board of twenty-one volunteers appointed by government leaders. It was upon the recommendation of the governing board of GACPD that Governor Easley re-designated CLA as the state’s P&A. Carolina Legal Assistance was chosen as the state’s independent P&A system in part because of its long history as an independent private non-profit disability law project advocating continuously for people with mental disabilities in North Carolina.
As the P&A agency, CLA was renamed Disability Rights North Carolina in September, 2007. The purpose of the P&A is to protect and advocate for the human and legal rights of individuals with mental illness or developmental and other disabilities. Our mission and services have expanded to include protecting all people with disabilities in specific target areas. Through the years, CLA took leadership roles that resulted in systemic changes in the delivery of mental health services in North Carolina; special education; abuse, neglect or exploitation of people with disabilities; application of Medicaid benefits; alternatives to guardianship; and limited guardianship. Disability Rights North Carolina is poised to continue that leadership role as a truly independent organization in possession of the experience, the skills and the heart to protect the interests of all of North Carolina’s most vulnerable citizens.