Speaking out for People with
 Intellectual and Developmental Disabilities

VOR's Abuse and Neglect Document

VOR's Ongoing Document:
 Updated October 3, 2019
 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.
 
 
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Joint Report from HHS OIG, ACL, and OCR: Group Home Beneficiaries are at Risk of Serious Harm

This report, released in January, 2018 by the U.S. Department of Health and Human Services,' Office of the Inspector General, Administraton for Community Liiving, and Office of Civil Rights 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.

Improving Background Checks for Direct Support Professionals

VOR supports a well-trained, well-paid workforce of healthcare professionals to care for our loved ones with intellectual and developmental disabilities (I/DD). A fully coordinated nationwide program for background checks for Direct Support Professionals (DSPs) would be essential to protecting individuals with I/DD while improving the quality and integrity of long-term caregivers.

VOR's position paper supporting National Background Checks is available here.

Please Oppose the Disability Integration Act

The Disability Integration Act (DIA) is a seriously flawed bill. While the intention of the bill is to provide services for all people with intellectual and developmental disabilities, it would eliminate existing services provided to the most severely impacted members of this population, and moving these individuals from their long-term homes into more isolated settings that provide fewer services, lower staffing ratios, and lower standards of care.

Your Legal Right To An Intermediate Care Facility

Right To Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID)

Individuals who qualify for Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID)* under Medicaid have a legal right to such facilities for as long as they remain eligible and choose to do so. Despite a deinstitutionalization effort by those opposed to congregate care, the ICF/IID program remains a legally enforceable federal entitlement under Medicaid. States which have included ICF/IID in their Medicaid State Plans, but instead offer only Waiver services, are in violation of federal Medicaid law.

Surviving the Inclusion Delusion: Danny at 40

By Jill Barker

My son Danny is forty years old this week. He has multiple disabilities resulting from brain damage acquired during his first few days after birth. He functions at the level of a 6 to 12 month old infant and always will. And, yes, I know he is not really an infant.  We do not love him less because he lives and survives with profound developmental disabilities.

I first heard the term Inclusion around 1990. Danny was 13 years old and attending High Point School in Ann Arbor. High Point was an outstanding program for Danny, bringing together services, expertise, and a supportive community to accommodate children with the most severe disabilities, including complex medical and behavioral conditions.  

Inclusion, when applied to schooling for disabled children, is the belief that all children, regardless of the severity or nature of their disabilities, can and should be educated in regular classrooms with their non-disabled peers.  Inclusion was promoted by many disability advocates as a “right” for every child. Most discussions of the idea did not include an examination of whether the premise on which the belief is based is true for every child or whether it is required by the federal Individuals with Disabilities Education Act (it is not). In the face of any disagreement with the idea, promoters of inclusion encouraged families to take sides: “Are you for ‘Inclusion’ or against it?” Or as many advocates would have it, “Do you want disabled children isolated and segregated from the rest of society or do you want them to be fully integrated into and embraced by ‘the community’”? This continues to this day.

Download this article here