2003 P&A/CAP System

Annual Report

The Training and Advocacy Support Center, a federal interagency project of the Administration on Developmental Disabilities, the Center for Mental Health Services, and the Rehabilitation Services Administration, presents this year’s annual report of the Protection and Advocacy System. This year’s annual report is straightforward: it is a reflection of the System’s core purposes and its ambitious federal mandates to protect the rights of persons with disabilities and thereby promote their full participation as active members of society. The P&A System comprises a unique nationwide network of disability rights advocates who strive every day to:

Meet the critical needs of people with disabilities, in the areas of health care, education, employment, housing, transportation and within the criminal justice system;

Protect from abuse and neglect such as deadly restraint and seclusion of children;

Advocate for basic rights, such as, the right to vote or live in one’s own home, rather than an institution; and,

Ensure accountability through independent oversight of state government agencies that provide housing, treatment, education, and other direct services to people with disabilities.

In the past year, the P&A System has been given new authorities and responsibilities and has seen the expansion of existing authorities, which will enhance our role as the nation’s primary non-federal disability rights enforcer.

Congress approved, and the President signed, the Help America Vote Act, which created a protection and advocacy system for voting access. Congress also appropriated the first start-up funding for this program.

This year saw the expansion of a new program for people with traumatic brain injury to a formula grant, enabling all P&A agencies to receive funds to expand and focus more resources specific to people with traumatic brain injury.

The PABSS program also saw increased need for service due to the roll out of the Ticket to Social Security beneficiaries under Ticket to Work and Work Incentives Improvement Act (TWWIIA).

The P&As continue to investigate death, suicides, and serious injury in children’s facilities.

NAPAS also expanded its ability to provide technical assistance to member agencies from the Social Securities Administration and the Health Resources Services Administration.

The new program for Social Securities beneficiaries with disabilities is in full swing and coincides with the rollout of the Ticket to Work and Self-Sufficiency Program.

Given the existing great demand for services on the part of the disability community, these new mandates underscore our challenge to protect and advocate in a systematic and strategic manner in order to ensure the greatest positive impact. As illustrated here, we rely on a continuum of strategies tailored to the specific issues at hand. This report provides a wealth of examples of the System’s commitment to this approach.

Thank you for your support of the nation’s disability rights network.

The P&A System

Each state has a designated, federally funded and mandated, Protection and Advocacy agency (P&A). In some states, P&A agencies are part of the state government; however, typically they are independent not-for-profit organizations.

P&As provide legally based advocacy services under the following programs: Protection & Advocacy for Persons with Developmental Disabilities (PADD), Protection & Advocacy for Individuals with Mental Illness (PAIMI), Protection & Advocacy for Individual Rights (PAIR), the Client Assistance Program (CAP), Protection & Advocacy for Assistive Technology (PAAT), Protection & Advocacy for Beneficiaries of Social Security (PABSS), Protection & Advocacy for Traumatic Brain Injury (PATBI) and Protection & Advocacy for Voting Accessibility (PAVA).

These eight programs may be operated in one or more agency in each of the 57 states and territories. Program priorities are developed on an annual basis with consumer input. However, the ability of all the programs to serve a particular individual with a disability is limited by their program priorities for case selection as well as the program’s financial resources.

With 80 percent of the P&As/CAPs reporting, services were provided to 64,458 people during the 2003 fiscal year.

Continuum of Advocacy toward full participation for People with Disabilities - From Individual to System

Advocacy Terms and Definitions

Administrative Appeals - Providing non-litigation based remedies on behalf of people with disabilities through the appeal process or through the complaint process of a Federal, state or local agency with investigative and/or enforcement authority relating to violations of civil rights.

Class Action Litigation - Filing a lawsuit on behalf of a group or “class” of people.

Counseling/Advice - Providing information or advice to a client (who has an open case) or explaining to persons with disabilities their rights to receive particular services.

Impact on Policy Makers - Changing a procedure or practice due to the involvement of a P&A in a case.

Individual Litigation - Filing a lawsuit on behalf of a client.

Information/Referral - Brief written or verbal information, including information about the P&A and additional resources, provided in response to individual requests and needs.

Investigation - Examining information, records, evidence, and circumstances surrounding a specific allegation of abuse or neglect. Investigations are undertaken to determine if there is basis for action on behalf of the client. Requires a significant amount of time and resources.

Legislative Advocacy - Contributing to the understanding of legislation.

Mediation/Negotiation - Two parties meeting, with or without the assistance of a third party facilitator, in an attempt to resolve a dispute without resorting to litigation.

Monitoring - Examining information or records to ascertain whether there is a pattern or practice which is abusive, exploitative, or violates the rights of persons with disabilities receiving services from a specific provider.

Self Advocacy - Giving people with disabilities the knowledge and tools with which to advocate for themselves.

Training/Education/Outreach - Sharing information with people, which promotes a greater understanding of the rights of people with disabilities.

The P&A System at Work

Abuse and Neglect: Detection and Prevention

P&A Systems have unique authority and expertise to detect and prevent abuse and neglect of all people with disabilities in both institutions and community settings. The enabling laws that created and authorize the System recognize that state and private care providers, including psychiatric hospitals, nursing facilities and group homes, must be subject to an independent federally mandated system of oversight. The same is true for state agencies that operate public systems of care for those with disabilities and/or are charged with investigating abuse and neglect claims. Unfortunately, care providers frequently are not held accountable by such state agencies. These providers and the agencies themselves may strongly resist disclosure of information about their performance and internal investigative findings to P&As, family members of victims of abuse and other interested persons.

Accordingly, Congress provided P&As with the authority to monitor care providers and state agencies by touring facilities to inspect health and safety conditions, speaking with patients and staff to learn about and address their concerns, and review medical and investigative records that may shed light on the adequacy of care and state oversight. The System is also empowered to pursue all appropriate strategies and legal remedies to ensure that the rights of vulnerable persons with disabilities are protected.

For example, P&As may use their own expert staffs or consultants to uncover faulty systems of care and negotiate necessary reforms. They issue public reports and make recommendations to public policy makers to bring attention to especially abusive or neglectful conditions. On occasion, it has been necessary to bring litigation to redress a variety of abuses, including dangerous medication practices, lack of therapy or habilitation services, assault, sexual abuse, and reliance on restraint and seclusion rather than treatment, to address behavior problems. This latter practice, which may involve binding or shackling limbs, chemically sedating and/or isolating individuals, has resulted in hundreds of deaths and thousands of injuries in recent years, especially among children with mental or developmental disabilities, who are especially vulnerable.

The following are examples of effective strategies P&As have used to detect and prevent the all too common abuse and neglect of persons with disabilities.

Protecting Individuals From Harm

The Maine P&A provided assistance to an individual who was sexually victimized by a mental health outreach worker. After investigating the sexual abuse, the P&A filed a complaint with the state licensing board for unethical conduct. The mental health worker was discharged and no longer is working in the state.

After receiving a report that the guardian of a man with mental retardation was physically abusing him and embezzling his savings, the Rhode Island P&A obtained a court order immediately removing the guardian. The P&A also brought in the police, who discovered that the guardian chained the man to his bed and shot him with a stun gun. The P&A found the client private counsel, who is pursuing an action to collect the stolen funds.

Recently, federal regulations became effective which create standards for the use of restraint and seclusion in children's psychiatric residential treatment facilities and require reporting to P&As of deaths and injuries for investigation. A number of P&As have taken the initiative in educating hundreds of facility operators around the country regarding these new obligations and in establishing protocols to streamline reporting to the P&As. For instance, the Colorado P&A sent a mailing to all such facilities in the state and provided each a poster to be placed in the facility to inform residents how and where to report abuse, neglect and other rights violations.

As a result of advocacy by the Idaho P&A, an individual with mental retardation was provided potentially life-saving surgery. In this case, the head of the facility where the individual resided refused to arrange for the surgery, asserting that consent for the procedure was lacking. The P&A reviewed relevant state law and prevailed in its argument that the surgery should be authorized.

During a monitoring visit to a state psychiatric hospital, a patient informed the Michigan P&A that he had been repeatedly abused by a staff member. The P&A worked with the hospital to have the patient transferred to another unit away from the staff member and filed a complaint with the state oversight agency. This resulted in the staff member’s termination.

Oversight of State Investigations Systems

Through an agreement it developed with the state administration, the Arizona P&A received and reviewed over 300 reports of deaths of persons with disabilities in residential facilities in the last year, and based on findings of potential abuse and neglect, requested that the state conduct investigations in eight of the deaths. With respect to at least six of these deaths, significant indications of abuse and neglect were found and the state imposed a variety of remedies to address the issues. As a result of this initiative, the state is more aggressively initiating its own independent investigations and making needed reforms.

Similarly, the Virginia P&A issued a public report criticizing a state agency investigation of the suicide of a woman with mental illness. The P&A’s investigation, relying in part on the opinion of an expert it hired, found that the state had placed the woman in a supported apartment without appropriate care or monitoring, contributing to her death. As a result, the State has begun a new independent investigation.

The Native American P&A mental health program, just in its second year of operation, reviewed a tribal system of social services and found that it lacked adequate policies and practices to investigate and remedy allegations of abuse involving children. The P&A worked with the system to develop effective protocols for these investigations.

The Texas P&A undertook a review of the state’s investigation of 30 suspicious deaths in the last year, and found that state investigators failed to identify violations of state rules on restraint use, which may have contributed to some of the deaths. Consequently, the P&A plans on assisting the state oversight agency in developing a quality assurance protocol for state investigators.

Direct Investigations/Public Reports

P&As routinely conduct focused investigations of unsafe practices and publish reports of their findings. The California P&A investigated incidents of restraint or seclusion that contributed to the serious injury or death of 12 persons with psychiatric disabilities. Based on some of these investigations, the P&A published a groundbreaking report analyzing the lethal hazards of face-down (or prone) restraint and the importance of collecting all relevant medical information. Similarly, recognizing the dangers of prone restraint, based on its long-time review of this practice, the Maryland P&A was successful in advocating the banning of such restraint in all programs run by the State Developmental Disabilities Administration.

Following a New Mexico P&A investigation, which substantiated abuse of a child at a residential school, the P&A reached an agreement with the school, through negotiations, whereby it will take a number of measures to improve its ability to prevent similar incidents. The school agreed to, purchase a video camera to be used for recording attempts to physically control students; provide training to staff on documenting incidents of abuse; ensure privacy of client calls to the P&A; and hire new staff to handle client grievances. In another case, the P&A learned of a young man with severe developmental disabilities who was left in a bed unattended, lying in his own urine and feces for a long period of time, without being given food or water. Through the P&A’s efforts, three staff persons responsible for his care were terminated, and improvements were made to staffing levels and training.

Through intensive monitoring of conditions and reviews of records, the Illinois P&A substantiated chronic problems at a state-operated facility serving persons with developmental disabilities, including numerous serious injuries and deaths and a lack of appropriate treatment and programming. The P&A provided documents and testimony to state policy makers recommending closure of the facility. As a result, the facility was put out of operation and the residents were transferred to other settings that provide appropriate care.

Litigation/Systemic Reform

The Washington P&A prevailed in a significant class action, reaching a settlement that will protect the right of many persons with developmental disabilities, residing in a large state hospital, to receive adequate services and treatment. This case was initiated by the hospital’s longstanding apparent abuse of patients, such as reliance on inappropriate or excessive medication; placing vulnerable patients on wards where there is a great risk of being both physically and sexually abused; use of excessive seclusion and restraint; denying appropriate psychological therapy; and failing to plan for adequate treatment. In a court-approved settlement, the hospital is now required to provide, among other things, specialized care, including at least six hours per day of active treatment; staff training on the unique needs of this population of patients; adoption of a policy that will minimize the use of seclusion and restraint; and improvement in the way it reports possible incidents of abuse and neglect of residents.

The Maryland P&A prevailed in an action redressing a male direct care worker’s sexual assault of a 14 year-old female patient in the adolescent ward at a state psychiatric facility. The P&A filed a civil suit against the assailant for assault and against the State Department of Health and Mental Hygiene for negligently failing to provide proper care and protection for the patient. The parties reached a settlement, with the state agreeing to pay into a trust for the girl the maximum amount permitted under state law ($100,000.00). The state also agreed to provide support services to the patient over a ten-year period, to be supervised by an expert. The court also ordered a large monetary judgment against the assailant.

The Nebraska P&A successfully settled a wrongful death action involving a woman with severe developmental disabilities who drowned in a whirlpool when left unattended by staff of a state facility. After much resistance, the state admitted its negligence in the death, and agreed to pay the woman's heirs $125,000, construct and maintain a memorial for the woman on the grounds of the facility, and allow the P&A continued access to monitor conditions.

Education: Leave No Child Behind is for Everyone

Due to the importance of school in virtually all aspects of a child’s development --academic, behavioral, artistic, musical, physical and social to name a few -- and the fact that education takes up one quarter to one third of the average person’s life span, P&As devote a substantial portion of their time and resources on advocacy related to this topic. The full range of services provided by the P&A are employed. P&As engage in parent and individual training, information and referral, as well as policy and systemic advocacy, some of which involves entire states, school districts larger than some states, e.g. Los Angles and New York City, the U.S. Department of the Interior, and the U.S. Department of Education. This year saw important work in some of the traditional areas, such as inclusion of students with disabilities in classes or schools with regular education students and school exclusion cases (e.g. suspension and expulsion), but also substantial successes in areas that are newer for some states, such as advocacy in early intervention (the Birth through three program) and the juvenile justice and foster care systems.

Profile on Restraint and Seclusion/Abuse and Neglect in Public Schools

As students with disabilities are increasingly included in regular classrooms, some schools do not have staff adequately trained to meet their needs, and reports of inappropriate restraint and seclusion have been on the rise. The P&A network has worked hard to address this problem on both the individual and systemic level.

$ Oklahoma P&A: Without informing his parents, a child with a developmental disability was placed in a small room made to look like a house at the side of the regular classroom, with a plastic mesh and PVC fence out front in the style of a small “yard” to the student’s “house.” The yard separated the student from the other students in the classroom. The student was required to stay in this house and yard all day. There was a large, orange easy chair and no books or other learning equipment and the child had only been let out of the house on a device similar to an animal leash, despite the fact that he had recent back surgery and this type of restraint would not have been permitted by his doctor. The P&A intervened, and the situation was eliminated in short order. Final resolution of this case is pending.

$ Illinois P&A: A 10 year-old student was identified as having a behavior disorder was placed in a segregated behavior disorders classroom. After two months in that classroom, he told his mother that a school staff member had forced him to the ground and sat on him. The P&A intervened and obtained copies of all of his school records. There was no indication that the district had ever attempted to conduct a functional behavioral analysis or positive behavioral intervention plan, as is required by state and federal law, or that his behaviors would warrant physical restraint as an appropriate intervention. The law also requires, when a child is physically restrained, that the parent(s) be notified, which did not occur. Once the P&A corrected the use of physical restraint, it successfully advocated for the provision of a full neuropsychological evaluation, and the findings of that evaluation were incorporated into a new Individual Education Plan (IEP). Following the evaluation, the student was transferred out of the segregated behavior disorders classroom and is successfully included in the regular classroom – without the need for restraint.

$ A number of P&As have worked successfully on the state level to obtain legislation, regulations and procedures to address the use of restraint and seclusion in public schools. Illinois, Texas, Massachusetts and Maryland, along with a number of other P&As, are currently hard at work on this issue. TASC/NAPAS staffs a well attended workgroup on restraint and seclusion in order to facilitate this work.

Training

Often, the most important work the P&As can do is to teach parents and others the skills they need to successfully advocate on behalf of students with disabilities. Both Oklahoma and Connecticut P&As have developed models that train and support parents in advocating for their own children and other students with disabilities. The Oklahoma program reaches out to rural parents of children with disabilities, and the Connecticut P&A is working with a community organization to train Latino parents. Both also serve as models of successful collaboration with other groups, have stood the test of time, and are intensive, requiring a multi-week commitment from these busy parents. The P&A in American Samoa worked with a key school district to ensure that parent materials were translated into the languages of the major resident nationalities: Samoan, Chinese, Korean, Tongan and Fijian, in order to facilitate parent participation.

Several P&As have focused on training other professionals who come into contact with children with disabilities. In California, the P&A offered training that was geared towards teaching the basics of special education law to juvenile court judges, bench officers, foster care providers and court appointed counsel, among others. In North Dakota, P&A staff taught regular and special education staff communication and problem solving skills for addressing student’s problem behaviors. Texas P&A developed a statewide training program on positive behavioral supports and interventions.

Classroom Inclusion

More than 25 years since the requirement was clarified in federal law, a large number of cases still address the ability of children with disabilities to learn in the least restrict environment. In Maine, a 13 year-old boy with a diagnosis of dissociative disorder and depression had been out of school since December 2000 due to the district’s failure to accommodate his disability. After the P&A intervened, he was returned to school in the regular classroom with proper supports. P&A advocates accompanied his parent in the first two IEPs in this process and by the third she was able to successfully negotiate the IEP by herself.