Speaking out for People with
 Intellectual and Developmental Disabilities

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The 17th Anniversary of Olmstead

VOR Celebrates the ADA and Recognizes the Full Meaning of the Olmstead Decision

The Department of Justice (DOJ) recently recognized the 17th anniversary of the U.S. Supreme Court Olmstead decision by pointing out the strides that have been made in providing more opportunities for individuals with disabilities in mainstream American life. As we celebrate this aspect of the Olmstead decision, let us not forget the fullness of the ruling and the emphasis the Court placed on individual choice to protect health and safety and the basic civil rights of individuals with intellectual and developmental disabilities (I/DD).

Too often, some disability rights advocates and federal agencies have read Olmstead as a mandate for all individuals with I/DD, regardless of their individual needs, to be served in community-only settings. Federal “Olmstead enforcement” activities are an example of how some have misread the Olmstead decision and the Americans with Disabilities Act (the ADA) to the detriment of the individual rights of those who were intended to be the beneficiaries of these landmark actions. Driven by the DOJ Civil Rights division and the Administration for Community Living (ACL) of the Department of Health and Human Services, these activities are aimed at eliminating opportunities for individuals with I/DD to live and work in more structured, congregate settings which provide higher levels of care, including nursing, therapy and behavioral supports. While community living may work well for many people who are capable of making decisions with a little help, congregate settings furnish life-sustaining services for those who need more care to assure their health and safety.

Download the full letter

Reports from VOR's 2016 Annual Conference and Washington Initiative

VOR's 2016 Annual Conference and Washington Initiative was held at the Hyatt Regency Capitol Hill again this year. By all accounts the conference and initiative were a great success, both in terms of reaffirming our committment to VOR's mission and in our success at getting out message to legislators and their staff members. Please click on the links below to see some of the materials presented to Congress at the Legislative Initiative, reports submitted for the confernce from state coordinators and attendees, some of the supplementary materials presented at the conference.

Please click here for a list of our conference sponsors, whose contributions made this event possible.

 

Click on the pages below to access downloads from the conference:

Legislative Initiative Materials

State Reports

Supplementary Materials Presented at the Conference

VOR Position Paper: Guardianship vs. Supported Decision Making

VOR on Guardianship and Supported Decision Making

By Hugo Dwyer and VOR's Issues and Oversight Committee

Guardianship is the legal process whereby the courts appoint a person “to have the care and custody of a minor or of an adult who has been legally determined to be incapacitated.” (www.mo.bar.org) Guardianships are awarded to protect the individual from abuse, neglect, and exploitation and guardians are expected to act in the best interests of the individual concerning their residential, medical, psychiatric, behavioral, and financial needs. Legal guardianship is both a responsibility and a privilege.

VOR maintains that strong, well-monitored guardianships are essential to the protection and well-being of individuals with Intellectual and Developmental Disabilities (I/DD) who cannot make decisions for themselves. Our membership consists primarily of people who have family members with severe and profound intellectual and developmental disabilities, many of whom have multiple disabilities that may include chronic medical conditions, seizure disorders, visual or hearing impairments, mental illness, and/or extreme behavioral challenges. Many of these individuals function at an infant or toddler’s level although fully grown and need substantial support in every aspect of life. In most cases, our disabled family members have been adjudicated incompetent and a legal guardian has been appointed for them, most often a parent, a sibling or other close relative, or a family friend.

VOR on Guardianship and Supported Decision Making (SDM)

VOR Policy Statement on Guardianship and Supported Decision Making

Guardianship is the legal process whereby the courts appoint a person “to have the care and custody of a minor or of an adult who has been legally determined to be incapacitated.” (www.mo.bar.org) Guardianships are awarded to protect the individual from abuse, neglect, and exploitation and guardians are expected to act in the best interests of the individual concerning their residential, medical, psychiatric, behavioral, and financial needs. Legal guardianship is both a responsibility and a privilege.

Supported Decision Making (SDM) is a national initiative that promotes “a process in which adults who need assistance with decision-making ... receive the help they need and want to understand the situations and choices they face, so they can make life decisions for themselves, without the need for undue or overbroad guardianship”. Many advocates for SDM go further in explicitly supporting the elimination of guardianship. VOR believes that SDM is not a valid replacement for legal guardianship as it lacks standards, accountability, and proven effectiveness in protecting people with significant disabilities. 

Report on the 2016 Omnibus Spending Bill

Last week, Congress passed the 2016 Spending Bill. Several VOR members have been working with the Labor Health & Human Services (LHHS) Appropriations Subcommittee to try to get protective language written into the bill that would favor VOR's positions on choice and the rights of the I/DD population. While we succeeded in the House, the Senate LHHS Subcommittee did not agree and the House language was changed.

While we did not achieve the language we wanted, we did achieve some language which will hopefully be a step forward in bringing pressure on the Administration to address our grievances with federal policies which allow federal funds to support law suits brought in the name of individuals with cognitive deficits without their legal guardians’ approval.

You may read or download the text of the bill here

VOR Survey: Giving a Voice to Families and Guardians of Individuals with Intellectual and Developmental Disabilities in Various Residential Settings

Policy favoring deinstitutionalization has had a major adverse effect on many individuals, with a shift in funding priorities from Medicaid Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) and other specialized facilities, to smaller service options, such as Medicaid Home and Community-Based Services (HCBS) settings.