Speaking out for People with
 Intellectual and Developmental Disabilities

Abuse and Neglect Document

VOR's Ongoing Document:
 Updated April 14, 2018
 This document provides a bibliography of investigative media series, state audits and peer-reviewed research in more than half the states that detail systemic concerns with regard to quality of care in community-based settings for persons with developmental disabilities. Tragedies range from physical, emotional, and financial abuse, neglect and even death. Many of these outcomes are associated with a zest to move to a "community for all" vision people with developmental disabilities without adequately considering the ramifications of separating vulnerable people from specialized care and then doing away with a critical safety net (a/k/a deinstitutionalization). The lessons learned from more than 25 states should cause policymakers and lawmakers to take pause and recognize that a range of needs requires a range of service options.

NATIONAL: Joint Report from U.S. Department of Health and Human Services’ Office of Inspector General (OIG), Administration for Community Living (ACL), and Office for Civil Rights (OCR):     January, 2018.                “Ensuring Beneficiary Health and Safety in Group Homes Through State Implementation of Comprehensive Compliance Oversight”

This report, released by three agencies operated by the U.S. Department of Health and Human Services, acknowledged the systemic shortcomings in protecting residents of HCBS waiver group homes from incidents of abuse and neglect. OIG found that up to 99 percent of these critical incidents were not reported to the appropriate law enforcement or state agencies as required. The report stated, “Group Home beneficiaries are at risk of serious harm. OIG found that health and safety policies and procedures were not being followed. Failure to comply with these policies and procedures left group home beneficiaries at risk of serious harm. These are not isolated incidents but a systemic problem – 49 States had media reports of health and safety problems in group homes.

OIG highlighted the lack of reporting critical incidents of abuse and neglect in privately operated group homes, including “deaths, physical and sexual assaults, suicide attempts, unplanned hospitalizations, near drowning, missing persons, and serious injuries. Critical incidents requiring a minor level of review generally include suspected verbal or emotional abuse, theft, and property damage. For critical incidents that involve suspected abuse or neglect, the HCBS waiver and State regulations also require mandated reporting.” It found that in the states under study, “the State agencies did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents involving Medicaid beneficiaries with developmental disabilities.”

For more information on the Joint Report: https://www.acl.gov/aging-and-disability-in-america/joint-report-ensuring-beneficiary-health-and-safety-group-homes

Download the report here: https://www.vor.net/images/stories/2017-2018/ACL-group-homes-joint-report.pdf


From The VOR Archives: Reports on DD Act Abuse

The Human Consequences of DD Act Abuses: State Specific Reports

The primary programs authorized by the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) are the state Developmental Disabilities Councils (DD Councils), state Protection and Advocacy (P&A) systems, and state University Centers for Excellence in Developmental Disabilities (UCEDD).

Some DD Act programs pursue activities which violate Congressional intent, including activities which:

1. Disregard family input, in violation of the Act's requirement that individuals and families be the "Primary Decisionmakers" through litigation, legislative advocacy, and organizational priorities;

2. Facility closure activities (ICFs/MR deinstitutionalization); and

3. Activities which discriminate against people with severe and profound intellectual and developmental disabilities, and the impact of these activities on these people.

A report of DD Act abuses covering many states is available here.

State Specific reports are available as follows:

The DD Act: The Need For Immediate Reform

For the first time in nearly a decade, Congress will be considering the reauthorization of programs receiving federal funding under the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). 

While the DD Act’s policy endorses residential choice and individual decisionmaking, some DD Act programs, through legislative lobbying, class action lawsuits and other tactics, act to eliminate one of those choices – Medicaid-certified and funded Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR).