the advocacy monitor

Independent Living News & Policy from the National Council on Independent Living

Resolution Opposing Applied Behavioral Analysis (ABA)

Submitted by: Ami Hyten

Adopted July 21, 2021

WHEREAS, Applied Behavioral Analysis (ABA) is used as a treatment intervention for people and children with disabilities, in particular those who have autism; and,

WHEREAS, the practice of ABA is a “therapy” which seeks to erase characteristics associated with autism through the provision of rewards when an Autistic obeys and withholding thereof when they do not; and,

WHEREAS, this method of providing rewards only when a person obeys puts them at risk of believing they cannot say “no” to a person when told to do something; and,

WHEREAS, the inability to say “no” and to articulate one’s own needs and desires puts a person at risk of being abused or taken advantage of by others, especially by those in positions of power over them or by romantic partners; and, [Read more…]

Resolution Opposing Disability-Based Discrimination In Organ Transplantation

Submitted by: Diane Coleman

Adopted: July 23, 2020

WHEREAS, Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act prohibit federal and state health care programs from engaging in discrimination against people with disabilities; and

WHEREAS, Section 1557 of the Affordable Care Act similarly prohibits disability-based discrimination by health providers; and

WHEREAS, disability-based denial of lifesaving health care that is not based on the likelihood a treatment will be safe and effective constitutes discrimination within the meaning of the Rehabilitation Act of 1973, Americans with Disabilities Act, and Affordable Care Act; and

WHEREAS, nonetheless numerous organ transplant centers have official policies that deprioritize or deny organ transplants for patients with HIV, intellectual, developmental, or mental health disabilities; and

WHEREAS, nonetheless numerous organ transplant centers, during the candidate selection process, have impermissibly used characteristics of intellectual, developmental, or mental health disabilities as an explicit reason for the rejection of a candidate; and [Read more…]

Resolution Opposing the Use of QALYs (Quality Adjusted Life Years)

Submitted by: Diane Coleman

Adopted: July 23, 2020

WHEREAS, the Quality Adjusted Life Year (QALY) is a tool that estimates the value of a treatment according to years of additional life, discounted by level of disability; and

WHEREAS, the QALY therefore weighs the value of a year of disabled life as less than the value of a year of nondisabled life; and

WHEREAS, health programs, including state Medicaid authorities and health insurance companies, have shown interest in using the QALY to limit health care treatment coverage since the 1990’s and perhaps earlier; and

WHEREAS, when the state of Oregon attempted to apply QALYs to its Medicaid state plan in the 1990s, federal authorities found that Oregon’s proposal violated the Americans with Disabilities Act as inherently discriminatory; and

WHEREAS, Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act prohibit federal and state health care programs from engaging in discrimination against people with disabilities; and [Read more…]

Inclusive Emergency Management

WHEREAS, people with disabilities are two to four times more likely to be injured or die in a disaster;

WHEREAS, during a disaster, people with disabilities encounter barriers accessing disaster services including emergency notification, evacuation, sheltering, response, registering for (Federal Emergency Management Administration) FEMA disaster assistance, housing, throughout long-term recovery;

WHEREAS, these barriers are not a part of disability or aging; rather, they are the result of the failure to include disability and aging communities in disaster planning, response, recovery, research, and oversight;

WHEREAS, the Rehabilitation Act of 1973, as amended, and the Americans with Disabilities Act of 1990, as amended, provide civil rights protections and equal access to all disaster programs and services during disasters, requiring effective communication access to disaster information, physical access to all disaster services, shelters and temporary housing, and program accessibility; [Read more…]

Access Ready Environments

Whereas, the Americans With Disabilities Act, Section 504 of the Rehabilitation Act of 1973, as amended, and other federal/state laws require that all new or updated buildings meet federal and state physical accessibility guidelines;

Whereas, the Americans With Disabilities Act requires that government services and places of public accommodation meet accessibility guidelines;

Whereas, the Americans With Disabilities Act requires that places of employment make reasonable accommodations to provide for the employment of people with disabilities;

Whereas, the courts including the Supreme Court of the United States have upheld all the above requirements;

Whereas, the cost of retrofitting or upgrading both buildings and technology is often held out as a reason not to provide accessibility; [Read more…]

Voter Verification Systems

Whereas, the Help America Vote Act and Title 2 of the Americans with Disabilities Act of 1990, as well as other federal and state laws, guarantee the right of all Americans with disabilities to vote privately and independently;

Whereas, these laws, taken together, require the entire voting experience to be accessible to persons with disabilities, including those who are blind or have low vision;

Whereas, the National Council on Independent Living (NCIL) has been at the forefront of advocacy ensuring that this right is implemented for every person in America with a disability;

Whereas, areas in which voting rights advocacy by NCIL have occurred include accessible voting machines, accessible voter registration platforms, online ballot platforms, and access to sample ballots; [Read more…]

Do No Harm – Implementation of WIOA Regulations and Guidance Regarding CILs & SILCs

Whereas, Sect. 101 (a)(18) of the Rehabilitation Act states that the State plan shall include an assurance that the State will reserve and use a portion of the VR/110 (I&E) funds to support the SILC resource plan; and

Whereas, the Rehabilitation Act as amended by the Workforce Innovation and Opportunity Act in 2014 did not change Sect. 101 (a)(18) of the law regarding the use of I&E funds; and

Whereas, the Rehabilitation Services Administration has proposed a change in regulations that makes using I&E funding to support the SILC an option rather than a requirement; and

Whereas, many SILCs rely on I&E funding and removing that funding could create a hardship for the SILC; and

Whereas, a hardship would be created for the CILs if Part B funding is taken from the CILs to support the SILC; and

Whereas, many DSUs are “holding SILCs” hostage with threats of removing I&E funds from the SILC resource plan if a different DSE is selected; and  [Read more…]

Allies not Adversaries – Developing Collaboration between Centers for Independent Living and Adult Protective Services

Whereas, violence and abuse against individuals with disabilities occurs at a much higher rate than for individuals without disabilities;

Whereas, Adult Protective Services investigators (sometimes called caseworkers) are often the first responders to reports of abuse, neglect, and exploitation of adults with disabilities;

Whereas, the current structure of Adult Protective Services, including the type of abuse it responds to; the population it protects; the people required to report; and the type and quality of the response varies from state to state;

Whereas, this inconsistency creates confusion for service providers, it also creates an atmosphere of fear and mistrust for people with disabilities; and

Whereas, an inadequate response by Adult Protective Services can put the victim in further danger from the abuser, it can also result in the victim being re-victimized by the service system charged with protecting them;  [Read more…]

Support of APRIL’s Efforts to Increase Base Funding for Centers for Independent Living

Approved by the NCIL membership July 2014

Whereas, more than a decade and a half ago, a national effort was undertaken to establish a funding benchmark necessary to operate a Center for Independent Living that was adequately carrying out the duties and responsibilities spelled out in Title VII of the Rehabilitation Act; and

Whereas, that work in the mid 1990’s resulted in about 80%* of the states having set a “base funding” benchmark of $250,000 for their Centers before any funds are directed toward the development of a new Center; and

Whereas, a minimum of $250,000 to deliver the four core services in proportion and with quality, across a multi-county or multi-region service area is no longer adequate; and

Whereas, an examination of methods used to determine inflationary impacts over time, show that the purchasing power of $250,000 in 1995 requires significantly more money in 2012 (the latest year in which the calculations are available) with the current value of $250,000 using the Measuring Worth calculator (measuringworth.com) ranging from $377,000 using the Consumer Price Index to $530,000 using the relative share of Gross Domestic Product; and  [Read more…]

Reform of the Definition of Disability in the Social Security Act Used to Award Disability Benefits

Approved by the NCIL membership July 2014

Whereas, studies show that working age people with disabilities want to work and they do work; and

Whereas, the efforts to acquire and retain gainful employment are fundamental to a realization of full independence, equality and civic participation for people with disabilities; and

Whereas, NCIL is already engaged in seeking a redefinition of disability for young SSI beneficiaries through the CareerACCESS Initiative (www.ourcareerACCESS.org); and

Whereas, “disability” under the Social Security Act is defined as the inability to execute significant paid physical or mental labor, and whereas individuals must go through an extensive process to prove their inability to work as a stipulation for Social Security disability benefits eligibility; and  [Read more…]