Speaking out for People with
 Intellectual and Developmental Disabilities

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Celebrating the 17th Anniversary of the Olmstead Decision

Opportunities and Choices

Recently, the Department of Justice (DOJ), and the Administration for Community Living (ACL) issued press releases celebrating the 17th Anniversary of the Olmstead decision. VOR shares their view that there is much to celebrate in opening doors to community living for people with intellectual and developmental disabilities (I/DD) who are able and wish to take advantage of such opportunities. Unfortunately, their ideological preoccupation with one key part of Olmstead, community integration, at the expense of the other key part, choice, has reduced options for all people with I/DD. This crimped and, VOR would submit, inaccurate application of the plain language of Olmstead has done significant harm to many of our most disabled citizens.

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.