P&A Special Report

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"They died pinned down on the floor by hospital aides until the breath of life was crushed from their lungs. They died strapped to beds and chairs with thick leather belts...those who died were disproportionately young. They entered our health care system as troubled children. They left in coffins." from: Weiss, "Deadly Restraint," Hartford Courant (Hartford, Connecticut), 11 October 1998, p.1. A five-part investigative series that exposed a pattern of deaths in institutions nationwide resulting from the misuse of restraint and seclusion.

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It is a heartbreaking reality that some of our nation's most vulnerable citizens - persons with severe disabilities - cannot defend themselves against abuses and neglect that are sometimes handed down from the very institutions and organizations established to care for them. The deaths revealed in the Hartford Courant series are among a growing list of cases brought to the public's attention in recent years.

In truth, America's Protection and Advocacy (P&A) Systems have been fighting for the rights of these individuals and working to protect them from such harms for a quarter century. Established by Congress in 1975, the P&A System has made tremendous strides and accomplished great things in 25 years. Our work is, unfortunately, still very much a necessity if we are to ensure safe and secure lives for these members of our communities.

The tragic effects of improperly administered seclusion and restraint are at the core of the Protection and Advocacy Systems' mission to redress and prevent abuse and neglect among persons with disabilities. This report is dedicated to our efforts in this area.

During its 25-year history, P&As have fought diligently to protect these individuals from harm. Our focus on seclusion and restraint mirrors an alarming trend brought to public attention in recent media and government reports. (Indeed, the Federal government collected reports of 30 deaths related to restraint and seclusion occurring over just the last year in hospitals across the country, which P&As are now investigating.) These reports suggest that the misuse of restraints alone (through brute force, medication and manacles) results in the needless deaths of more than 100 patients every year. Thousands more are injured.
 

About the P&A System

Together, P&As comprise the nation's largest provider of legally based advocacy services for people with disabilities. P&As have the legal authority to:

• ¨Investigate suspected abuse or neglect and seek justice for victims and their families
• ¨Have access to records and facilities necessary to investigate abuse or neglect or to monitor the treatment and safety of residents
• Pursue litigation and all other appropriate remedies under federal, state and local law
• Provide information and referrals regarding entitlements to services and other legal rights
• Educate policy makers on needed reforms to disability-related laws and services

All P&As maintain a presence in facilities that care for people with mental illness, developmental disabilities and other disabilities, where they monitor, investigate and attempt to remedy adverse conditions and situations. They devote considerable resources to ensuring full access to inclusive educational programs,financial entitlement programs (e.g., Medicaid and Social Security), healthcare, accessible housing and productive employment opportunities. And they respond to allegations of abuse and neglect. 

Congressional Mandates

The P&A system is governed by several statutory programs that provide mandates to serve particular populations of persons with disabilities, and that establish distinct formula grant programs for services. The funding levels vary for these programs, affecting the availability of services for beneficiary groups. P&A congressional authority requires that each program develop annual priorities with input from the public - to ensure that the most critical needs of the disability communities in each state are met.

The DD Act The Developmental Disabilities Assistance and Bill of Rights (DD) Act established the P&A system in 1975. Congress recognized that a federally directed system of legal advocacy was necessary "to ensure the humane care, treatment, habilitation and protection" of persons with mental retardation, autism, cerebral palsy and other developmental disabilities.

The PAIMI Act The Protection and Advocacy for Individuals with Mental Illness Act of 1986 (the PAIMI Act), modeled after the DD Act, extends similar protections to persons with mental illness who reside in facilities. In passing this legislation, Congress recognized that existing state systems responsible for protecting the rights of this population varied widely and were frequently inadequate. The law also authorizes P&A services to address matters that arise within 90 days after an individual's discharge from a facility. This authority allows the P&A to help individuals make the transition to community living and avoid the possibility that - as a result of neglect, inadequate support services and/or discrimination - the individual's mental state might deteriorate, forcing a return to institutional care.

The PAIR Program In 1994, Congress provided, for the first time, full funding for the Protection and Advocacy of Individual Rights (PAIR) Program, which is part of the Rehabilitation Act of 1973. The PAIR program provides P&As nationwide the authority to serve persons with disabilities who are not eligible under the other P&A programs, including those with head or spinal cord injury, multiple sclerosis, HIV infection and AIDS, psychiatric conditions that do not require 24-hour treatment, cancer, heart disease, mobility impairments, etc. Persons eligible for services under this Program comprise by far the largest segment of the population of persons with disabilities in the United States.

The CAP Program Congress also established, through 1984 Amendments to the Rehabilitation Act, the Client Assistance Program (CAP), under which information and assistance is provided to individuals seeking or receiving vocational rehabilitation services, including assistance in pursuing administrative, legal and other appropriate remedies to ensure the protection of their rights.

Exposing Abusive Restraint and Seclusion

Inappropriate restraint and seclusion and other forms of abuse and neglect within the nation's institutions for people with disabilities are an unfortunate by-product of a system that suffers the effects of sometimes inadequate resources, under-trained and unqualified staff, low industry wages and lack of caring and consistent oversight. A compilation of nationwide data from the annual reports of P&As (from fiscal year 1999) shows that a significant proportion of complaints for people with mental illness addressed by P&As involved inappropriate restraint and seclusion.

Oversight of Inadequate State Service Systems

At the time of the 1990 Census, roughly nearly 2.1 million Americans with disabilities lived in some type of institution. In 1999, P&As investigated nearly 17,000 alleged incidents of abuse and/or neglect among people with mental illness alone (plus thousands more relating to other disabilities) who are housed, most often, in these institutions. The P&A System is uniquely qualified to investigate and remedy these incidents. It is independent from state service systems and is endowed with unique authorities.

Other watchdog systems and organizations are not equipped to provide necessary oversight and mandate care reforms. In fact, it has been well documented that states' deficiencies in the licensing and oversight of public and private facilities - - including failures to impose training standards or make on-site visits before licensing facilities- - have led to many suspicious deaths among institutional residents.

(See Boo, "Invisible Deaths, the Fatal Neglect of D.C.'s Retarded," Washington Post, December 5, 1999; Cenziper, "North Carolina's Troubled Mental Health System," Charlotte Observer, Jan. 23, 2000; Kestin, "Treatment Centers Have Few Regulations, Little Oversight," Orlando Sun-Sentinel, November 8, 1999.)

And there are similar deficiencies in the oversight of practices in hospitals and psychiatric and long-term care facilities performed by accreditation agencies; accreditation systems do not effectively identify and remedy in any comprehensive way systemic abuses in health care. (See Department of Health and Human Services, Office of the Inspector General, The External Review of Hospital Quality: The Role of Accreditation (1999).)

The Congressional mandate that established the P&A System expressly recognized the need to grant oversight of often inadequate state systems. The courts have uniformly ruled that P&As have the authority to compel facilities to allow the P&A agencies to operate effectively, with broad discretion and independence in gaining access to records and to facilities for investigative purposes. Unfortunately, the ability of many P&As to respond to reports of deaths, in particular, has been hindered by uncertain or nonexistent reporting requirements at the state and federal levels, by a lack of cooperation from some state and private agencies and, for most P&As, by a shortage of resources.

Media Brings Attention to the Issue

In a five-part investigative series, the Hartford Courant reported on a nationwide pattern of death in institutions resulting from the misuse of these practices. The reporter found that the misuse of restraint and seclusion (or forced isolation) as a tool to address difficult-to-manage behaviors results in 100 or more needless deaths each year. "For their part, health care officials say restraints are used less frequently and more compassionately than ever before. . . . But in case after case reviewed by the Courant, court and medical documents show that restraints are still used far too often and for all the wrong reasons: for discipline, for punishment, for convenience of staff." (Weiss, "Deadly Restraint," Hartford Courant,Oct. 11, 1998, and see stories published October 12-15, 1998 (online, at http://courant.ctnow.com/projects/restraint).)

P&As: Comprehensive & Independent Advocacy

P&As are in the forefront of efforts to eliminate deadly restraint and seclusion practices across the United States. The following are examples of P&A efforts in this area.

For more than 20 years, the New York P&A, with special state authorities and funding for investigations, has worked with great success in minimizing incidents of restraint and seclusion. The agency has conducted over 5,000 death investigations, which have resulted in hundreds of recommendations for facility- or system-wide reforms.

Investigations revealed that a number of hospitals around the state routinely and forcibly placed towels over the mouths of patients during restraints, which can easily result in asphyxiation. Because of the P&A's efforts, the practice has been banned throughout New York State. Recommendations have also led to significant reductions in the use of restraint and seclusion and in the number of associated deaths, and have improved emergency medical care and resulted in a reduction in suicide rates.

The California P&A has investigated at least 11 deaths related to restraint and seclusion in recent years and has issued three public reports that call for broad-based changes, including continuous monitoring during restraint and the identification of medical problems that may make seclusion or restraint medically inadvisable. Investigations have emphasized the dangers of prone (face down) restraint and identified other risk factors, including patient obesity and the administration of psychotropic medications. The P&A is distributing an advisory that details these deaths and that highlights policies and procedures that will assist clinical staff in identifying and responding to physical conditions that pose a significant risk of positional asphyxia or sudden death.

In 1989, the Illinois P&A represented a special education student who was locked in a small box (as a form of seclusion) to control his behavior. The P&A reached a settlement under which the practice was prohibited and damages were awarded. (The Minnesota P&A represented a child who likewise was placed in a metal box as a method of addressing mild behavioral issues; the agency was successful in having the school ban the practice.) In 1999, it was discovered that schools across Illinois were locking students - some as young as six years old - in closets for hours at a time in response to non-dangerous behaviors. The P&A educated the state legislature on the dangers of these practices and in 1999, a state law was passed restricting the use of restraints and seclusion in Illinois schools.

 Other P&As have had to pursue litigation as a last resort to address the more egregious and systemic forms of restraint and seclusion abuses. For instance, the Kansas P&A brought an action in October 1999 (still pending) against a state hospital in a case involving the improper restraint and subsequent death of an adolescent patient, Alan. After he got into an altercation, six staff members restrained Alan in a prone position for several minutes. One staff member admitted to using a choke hold for one to two minutes. Two other staff members held Alan down on his stomach by bending his arms up behind his back, using their weight to keep him face down, while three other staff people held his legs down. Alan stopped breathing during the restraint, convulsed on the way to the hospital and never regained consciousness. The P&A is seeking to require the State hospital to pay compensation for Alan's death, and to establish appropriate policies and procedures on restraint and seclusion, and adequate continous training for staff.

"The commitment to a strong, safe and effective service system is important to all of us. The open and objective review of that system (by the Illinois P&A) is one way in which we can assure that strength, safety and effectiveness." Statement of the Inspector, General, Illinois Dept. of Human Services, April 9, 1999.

Investigation of Hospital Deaths

The Health Care Financing Administration (HCFA), under new regulations, is providing P&As reports of restraint-related deaths that occur in hospitals nationwide. Initial reports reveal that at least 30 such deaths occurred during the one-year period since the regulations became effective, in August 1999. P&As are actively investigating these reports, frequently in collaboration with state health care licensing and certification agencies (and are finding additional serious abuses during the course of their investigations.)

Bills pending in Congress would require virtually all healthcare providers that benefit from Medicaid or Medicare to report restraint-related injuries and/or deaths to P&As for investigation. And P&As are educating state policymakers on this issue. In fact, legislatures in several states (including Connecticut, Illinois, New York, North Carolina and Virginia) have passed legislation that requires that various forms of abuse and neglect be reported to P&As - allowing them to investigate to determine whether abuse and neglect was the cause of the death or injury, and to seek appropriate corrective action (e.g., through reform to facility or statewide practices).

The following is a summary of some of these HCFA reports and P&As' preliminary follow up efforts.

 In Alaska, a man with delirium from alcoholism was placed in seclusion for 7 ½ hours, as a response to his agitated behavior. The death apparently was a result of thrombosis (blood clot) and a heart condition. The state licensing ency conducted an investigation, and issued a report which cited the hospital for continuing seclusion beyond the maximum period allowed (four hours) without a doctor's renewed order (in violation of the HCFA regulations). The Alaska P&A is attempting to conduct an independent investigation, and has had an expert review the patient's records. However, the hospital is blocking further investigative efforts by denying the P&A access to quality assurance records.

A patient died in Kansas after being administered clozaril (an anti-psychotic/neuroleptic medication) and being placed in locked isolation for over eight hours. The medication was administered despite a physician's orders stating "absolutely no neuroleptics" "neuroleptic malignant syndrome." The state licensing agency cited the hospital for failing to continually monitor, reevaluate and assess the patient any time during his confinement, as is required by the HCFA regulations. The P&A is conducting a separate investigation, based on the conclusion that the state agency did not sufficiently review the death, and plans to set a protocol for conducing investigations with the agency in the future. The hospital is refusing to release records. In August, the P&A was forced to file litigation in federal court to compel the hospital to release the records.

In responding to one HCFA report, the Ohio P&A found that a patient with bipolar disorder died as a result of cardiorespiratory arrest of unknown origin while in a seclusion room. The P&A reviewed facility records and filed a complaint with the Ohio Department of Health, outlining some concerns, including that: (1) records did not provide adequate documentation of restraint and seclusion; (2) the patient remained in restraint and seclusion for four days, though records did not show she was in any danger necessitating that action; (3) records failed to show that the patient was provided adequate medical care; (4) the hospital's assessment indicated lower left lobe pneumonia due to aspiration; and (5) significant amounts of medication were administered during 4 days of restraint and seclusion.

And responding to a second report, the Ohio P&A found that the patient became unresponsive while in mechanical restraints after being transferred from an intensive care unit. The P&A reviewed records at the facility, and again filed a complaint with the state agency. The complaint outlined concerns about treatment for withdrawal from prescribed medications and for a seizure. The patient had received 9 emergency psychiatric medications from time of admission to death.

The Texas P&A is responding to three separate reports. With regard to the first death, the agency, after a preliminary investigation, has a number of questions about the practices used to restrain the patient _ for instance, whether there was truly an emergency situation justifying the intervention to begin with, and the appropriateness of the use of a nasogastric tube to administer emergency medication. The P&A is consulting with medical experts on these issues.

In a second case, the Texas P&A is investigating the death of an individual who is deaf who committed suicide while in seclusion; he was not provided interpreter services during hospitalization. The P&A has been denied access to the records from the hospital and is considering litigation to compel disclosure. In the third case, the agency is investigating a death occurring while hospital staff physically held down the patient. The P&A is working with outside counsel, and examining whether the death occurred as a result of avoidable asphyxiation. Litigation may be necessary in this case.

Reporting is Critical

Federal law (other than the HCFA patient protection regulations) does not require facilities serving people with disabilities to report to P&As deaths or injuries that may be related to restraint and seclusion. As a result, a large number of these incidents remain unknown and uninvestigated. P&As are permitted to gain access to records to investigate abuse and neglect based on a complaint (e.g., when a family member suspects foul play and contacts the P&A) or on the P&A's own reasonable suspicion of such treatment.

Facilities too often dismiss deaths and injuries related to restraint and seclusion and other forms of abuse and neglect as unfortunate isolated incidents - perhaps the result of the person's underlying condition, not as the manifestation of systemic failures.

In order to allow P&As to address restraint-related deaths and serious injuries in a meaningful and comprehensive manner, reporting to P&As must be mandatory nationwide. It should be based on objective verifiable standards. And such reporting must be provided by a broad range of healthcare providers.

Reporting might cover all deaths and serious injuries of patients who have either a psychiatric or psychological illness or those with mental retardation (rather than permitting a healthcare provider to, for instance, report only those deaths and injuries which it believes were caused by restraint or seclusion). This would allow P&As to objectively review all deaths to determine which may have been the result of restraint and seclusion or other abusive practices for appropriate follow up. At the very least, reporting should extend to all patient deaths which occur during restraint and/or seclusion _ and those which occur within a specified time frame after that intervention has been discontinued. Reporting should also provide detailed information on the circumstances and cause of a restraint-related death or serious injury and the medical treatment provided to the patient.

And to avoid needless disputes over P&A authority, a federal-state cooperative effort is needed to educate healthcare providers about the P&A System, its role in investigating restraint-related abuses and its authority to access records and facilities to pursue such investigations.

Once a P&A receives these reports, their trained investigators and legal staff can make a preliminary determination as to which deaths may be due to the misuse of restraint and/or seclusion. Thereafter, the P&A would determine whether an independent investigation is warranted. If a separate investigation is planned or ongoing, the P&A might review that process to determine if it is sufficiently thorough, and/or collaborate in the inquiry. Where appropriate, the P&A could take appropriate corrective actions to ensure that these abuses do not occur in the future. For example, through negotiation or litigation, if necessary, corrective actions could be imposed to reform facility practices or statewide policies, appropriate compensation for family members of the deceased can be obtained, and staff involved in the death can be subject to termination and/or criminal prosecution.