The Lethal Consequences of Restraint
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EQUIP FOR EQUALITY A SPECIAL REPORT from the Abuse Investigation Unit NATIONAL REVIEW OF RESTRAINT RELATED DEATHS OF CHILDREN AND ADULTS WITH DISABILITIES: The Lethal Consequences of Restraint UIP FO Q R E E TM Q Y U A L I T UIP FO Q R E E TM Q Y U A L I T Mission Established in 1985, the mission of Equip for Equality is to advance the human and civil rights of people with disabilities in Illinois. Equip for Equality is a private not- for-profit legal advocacy organization designated by the governor to operate the federally mandated Protection and Advocacy System (P&A) to safeguard the rights of people with physical and mental disabilities, including developmental disabilities and mental illness. Equip for Equality is the only comprehensive statewide advocacy organization for people with disabilities and their families. All individuals with a disability in Illinois (as defined by the ADA) are eligible for services, including children, senior citizens, and individuals in state-operated facilities, nursing homes, and community-based programs. Services, Programs, and Projects Abuse Investigation Unit works to prevent abuse, neglect, and deaths of children and adults with disabilities in community-based programs, nursing homes, and state institutions. The Unit works with public investigatory agencies to improve their performance and coordination with each other; conducts investigations of abuse and neglect cases; alerts service providers to dangerous conditions and practices. Public Policy Advocacy achieves changes in state legislation, public policies and programs to safeguard individual rights and personal safety, enhance choice and self- determination, and promote independence, productivity, and community integration. The Program drafts and secures passage of state legislation and participates in state regulatory and policy-making processes. It also undertakes in-depth policy research and reform projects on complex issues that have a significant impact on the lives of people with disabilities. Self-Advocacy Assistance offers free, one-on-one technical assistance to inform individuals about their rights, alternative options and strategies, and steps they may take to advocate on their own behalf or on behalf of a family member. Legal Services provides free legal advice and representation in administrative proceedings and federal and state court. The Program also engages in systems and impact litigation. Training Institute on Disability Rights provides education through seminars for people with disabilities and their families. Seminar topics include rights and responsibilities under the Americans with Disabilities Act, protections against employment discrimination, guardianship, advance directives and special education rights. UIP FO Q R E E TM Q Y U A L I T NATIONAL REVIEW OF RESTRAINT RELATED DEATHS OF CHILDREN AND ADULTS WITH DISABILITIES: The Lethal Consequences of Restraint This publication is made possible by funding support from the U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services and Substance Abuse Mental Health Services Administration. The contents of this publication are solely the responsibility of Equip for Equality and do not represent the official views of these agencies. © Equip for Equality, 2011 UIP FO Q R E E TM Q Y U A L I T Authors and Expert Consultants Lana Norwood, M.S.S.W., Labor Relations Alternatives, Inc. J. Richard Ciccone, M.D., University of Rochester Medical Center Deborah M. Kennedy, J.D., Equip for Equality Abuse Investigation Unit Director Diane L. Faucher Moy, M.S.N., R.N., P.M.H.C.N.S.-B.C. Mary K. Allrich, M.S.N., R.N., L.P.C. Zena Naiditch, M.A., Equip for Equality President and C.E.O. Expert Consultants Jack McIntyre, M.D. John F. Erhart, M.D. Donna E. Sweet, M.D. William E. Golden, M.D., M.A.C.P. Frank Richeson, M.D. Thomas Bonfiglio, M.D. Equip for Equality Staff Members Mary Jo Kern, M.S. Gregg S. Brandush, J.D., R.N. 2 Th e Lethal Consequences of Restraint UIP FO Q R E E TM Q Y U A L I T National Review of Restraint-Related Deaths of Children and Adults with Disabilities: The Lethal Consequences of Restraint At age 9, Justin* was admitted to a residential treatment center for children ages 6 to 12. He died after he refused to follow a counselor’s instruction and lashed out at the staff. Justin, who weighed 104 pounds, was pushed against a door and pulled down to the fl oor by staff members. For seven minutes several staff members held him on the fl oor face-up with a 200-pound staff person lying across his chest. The coroner found Justin’s death to be the result of positional asphyxia due to physical restraint, with the manner of death identifi ed by the coroner as being “best deemed homicide.” Laura was 15 when she died at a residential program where she had been admitted after her mother refused to pick her up upon discharge from a state hospital. On the morning she died, Laura was not wearing socks. A staff member directed her to put socks on, and when she could fi nd none and put slippers on instead, the staff member ordered her to sit on the fl oor. When she refused, the staff member said she “fell” against the wall so hard the wall “broke.” Laura allegedly scratched a staff person, so two staff members physically restrained her in a seated position, her arms crossed in front of her body and pulled back tightly against her waist. She struggled for fi ve minutes and then appeared to calm down, but then she became unresponsive. Laura died four days later from complications of mechanical asphyxia compounded by her obesity and a seizure disorder. Martin was 23 and lived in a group home. He was autistic and had intellectual disabilities. He also had a therapy plan to help him if he became upset or aggressive. On the day he died, none of the staff in his home knew about his plan. When Martin became upset and tried to leave after running around the house, throwing things and disrobing, several staff members took him to his room, where he was forced face-down on the bed. One staff member sat on him, holding Martin’s arms behind his back with one hand and pushing Martin’s back down with the other. Martin died of asphyxia, with the manner of death listed as homicide. Loretta was 88 when she was admitted to a nursing home. In the two days before her death, she had been sitting in her wheelchair restrained with a lap belt, and three times a staff person found the use of the belt unsafe, as it had not been effective at keeping Loretta properly seated in the chair. On the day Loretta died, *Th e names of the individuals in the report have been changed to protect confi dentiality. National Review of Restraint Related Deaths 3 UIP FO Q R E E TM Q Y U A L I T staff members reported twice fi nding her seated on the fl oor with the lap belt still attached to the chair, once with the belt around her chest and a second time with Loretta gasping because the belt was around her neck. No changes were made to Loretta’s care plan. At 5:30 p.m. Loretta was in her room seated in the wheelchair and restrained by the lap belt. At 6:10 Loretta was found dead on the fl oor with the lap belt around her neck. Loretta died of positional asphyxia. Executive Summary Restraint remains one of the most controversial and dangerous measures used today in settings that provide services to people with disabilities. Restraint is an intrusive and dangerous intervention that can have signifi cant adverse implications for the physical and emotional well-being of the individual who is restrained. The use of restraints continues to represent a signifi cant risk to adults and children with mental illness or developmental disabilities in any setting where restraints are used, as evidenced by the growing number of documented deaths.1 The risk that restraint poses to people with disabilities is heightened by an oversight system that remains seriously fl awed. Current reporting of deaths related to restraints is neither complete nor comprehensive. The total number of children and adults, including seniors, who die each year as a result of being put in restraints, is unknown. Current reporting requirements do not include all publicly or privately funded facilities utilizing restraint.2 As initially reported in a 1998 series in the Hartford Courant, there was for many years – and continues to be – no comprehensive oversight system in place for monitoring restraint usage and compliance with the law. There continues to be no federal or state government agency responsible for collecting comprehensive data on restraint usage and deaths across all settings where restraints are used. In an effort to address this critical issue, Equip for Equality, in cooperation with the National Disabilities Rights Network (NDRN), which is the national membership organization for the Protection and Advocacy (P&A) Systems, and with medical, nursing and forensic experts, has conducted the “National Review of Restraint- Related Deaths of Children and Adults with Disabilities.” In addition to co-authoring the report, medical, nursing and forensic experts also provided in-depth analysis of the deaths. In addition to the expert analysis, Equip for Equality convened other experts to review the fi ndings and develop recommendations to Congress and the U.S. Department of Health and Human Services for reform. The 61 deaths examined in connection with this study reveal disturbing details of the end of life for children as young as 9 and adults as old as 95.