One Step Closer to Erasing the R-word

This week marks a great victory for disability advocates across the country.  The Social Security Administration’s (SSA) announcement of its proposal to stop using the term “mental retardation” and start using “intellectual disability” in its official Listing of Impairments and other regulations, is a victory larger than it may seem to many.  This decision brings us one step closer to a world free of the R-word.

Just think, this victory comes just over two years after President Obama signed Rosa’s Law, which substituted the stigmatizing word with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes.  Some might think two years is a long time, but the thousands of advocates like me who have spent decades working in the disability policy field know that change like this doesn’t come quickly or easily.

Today’s announcement is all the more remarkable because SSA takes this step voluntarily. Rosa’s Law did not specifically include Social Security or Supplemental Security Income, but SSA is making this change because it’s the right thing to do.

We know how powerful words are.  Words also represent you and your viewpoint, and we can all be happy that SSA is taking a step to change the words being used in their official documents to better promote the civil rights of individuals with I/DD.  The R-word isn’t just a word, it is a stigmatizing term that the disability community has been fighting against for years, and this week we are a step closer to banishing it from our government and our society.

But it’s not over yet – we need your help to keep the momentum going!

SSA will not be able to finalize this change until it goes through the rulemaking process required of all federal agencies.  SSA issued its Notice of Proposed Rulemaking to stop using the R-word on Monday, January 28th.  The public has 30 days to comment – and SSA needs to hear from you!

Please visit the Federal eRulemaking portal at regulations.gov.  Use the Search function to find docket number SSA-2012-0066 and then submit comments in support of ending the R-word. Comments are due on February 27, 2013.

The Arc Applauds Social Security Administration’s Ending the Use of the “R-word”

Washington, DC – In an historic change for people with intellectual disabilities (ID), the Social Security Administration (SSA) announced its intent to stop using the phrase “mental retardation” and start using “intellectual disability” in its official Listing of Impairments.

This change, which The Arc and many other organizations advocated for, comes a little over two years after President Barack Obama signed Rosa’s Law.  In 2010, The Arc was very involved in efforts to end the use of the “r-word” and worked to enact Rosa’s Law, which substituted the stigmatizing word with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes.  While the legislation did not cover programs such as Medicare, Medicaid, and Social Security, it was an important stepping stone for shaping future legislation and efforts that will transform these outdated terms in all federal laws.  The Social Security Administration’s actions are a welcome result of the success of Rosa’s Law.

“Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights.  This is an important moment for people with disabilities because Social Security is a lifeline to so many – it allows people with ID to live in their communities and be as independent as possible.  And now, the language the agency uses will reflect the respect people with ID deserve,” said Peter Berns, CEO of The Arc.

The proposed regulation published today has a 30 day comment period, and we encourage people to submit comments in support of the proposed regulation online by February 27, 2013.

News from the Social Security Administration

Social Security Commissioner Michael J. Astrue shared with The Arc the following note regarding a welcome change in terminology in the Administration’s Listing of Impairments.

I am pleased to inform you that today we put on public display at the Office of the Federal Register a Notice of Proposed Rule Making (NPRM) to replace the term “mental retardation” with “intellectual disability” in our Listing of Impairments and in other appropriate sections of our rules.

Many of you have rightfully asserted that the term “mental retardation” has negative connotations, has become offensive to many people, and often results in misunderstandings about the nature of the disorder and those who have it.  Partly in response to these concerns, Congress passed Rosa’s Law, which changed references to “mental retardation” in specified Federal laws to “intellectual disability,” and references to “a mentally retarded individual” to “an individual with an intellectual disability.”  While Rosa’s Law did not require us to make any changes to our existing regulations, we are doing so in the spirit of the law and to join other agencies and organizations who are adopting the term “intellectual disability.”

Beginning Monday, you can view the NPRM online at www.regulations.gov.

Thank you for your continued support and cooperation with the Social Security Administration as we work to serve the needs of the American public.

Michael J. Astrue
Commissioner

Interpretations of Rosa’s Law Confusing – Clarification from the DPC

Rosa's Law Signing image 1

President Barack Obama speaks at the official ceremony of the signing of Rosa's Law Friday, October 8.

There has been some confusion among intellectual and developmental disability advocates over varied interpretations of the language in Rosa’s Law and how it will be implemented at local, state and federal levels. The Disability Policy Collaboration has offered some clarification on key points in the legislation to help chapters of The Arc respond to questions by their constituents.

Quick Facts about Rosa’s Law

  1. The term “mental retardation” will be replaced with the term “intellectual disability” in federal health, education and labor statutes. Rosa’s Law applies only to programs under the jurisdiction of the Health, Education, Labor and Pensions (HELP) Committee, such as IDEA, vocational rehabilitation, ADA, health care and a few others.
  2. The law does not require any terminology change in state law. However, since many of the affected federal laws relate to state programs, the states will likely begin using the new term for these programs. More importantly, when a program covered by Rosa’s Law such as IDEA is reauthorized, any rules to implement the changes will then use ID instead of mental retardation.
  3. While most states have changed some terminology voluntarily and by statute, the changes vary in scope. For example, the vast majority of states have changed the names of their respective state agencies, using the term “Developmental Disabilities” in the agency name. But many of the programs overseen by these agencies still use the term mentally retarded (for example: Intermediate Care Facilities for Persons with Mental Retardation (ICF/MR).

A goal of The Arc is to get a similar bill introduced in the 2011-2012 Congress that will apply to other programs that are just as important to people with intellectual and developmental disabilities, namely Medicaid.

You can also download (you must be logged into The Arc’s website) these quick facts as a PDF.

The Arc Applauds the Passage of Rosa’s Law

Washington, DC – In a huge victory for self-advocates and The Arc, Rosa’s Law – legislation that substitutes the term “intellectual disabilities” for the term “mental retardation” in many federal laws – passed the House last night.

The Senate passed Rosa’s Law earlier this year. Passage by the House will send the measure to President Obama for his signature. The Obama administration supports this legislation and it is anticipated that the President will sign the bill into law shortly.

This is an important stepping stone for shaping future legislation that will transform these outdated terms in entitlement programs. This legislation substitutes the outdated, stigmatizing terms “mental retardation” and “mentally retarded” with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education and labor policy statutes.
The legislation does not cover entitlement programs, which includes SSI, Medicare, Medicaid and Social Security.

The Arc was instrumental in the passage of Rosa’s Law by galvanizing support across the nation and through vigorous advocacy. “When President Obama signs this into law we will have achieved another historic milestone in our movement. We understand that language plays a crucial role in how people with intellectual disabilities are perceived and treated in society. Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights,” said Peter V. Berns, CEO of The Arc.

Joe Meadours, Executive Director of People First of California and a member of the board of directors of The Arc of the United States said, “As a self-advocate, passing Rosa’s Law sends a powerful message that people with intellectual and developmental disabilities deserve respect. We want the same things everyone wants and deserve to live in the community just like everyone else. We want to take advantage of our constitutional rights to access education, employment and independent living in the communities we call home.”

Self-advocates and The Arc have led the effort to get the bill enacted into law as part of a nationwide effort to remove the stigma of the “r-word.” The majority of states have altered their
terminology by replacing the term “mental retardation” with “intellectual disability in state laws and in the names of state agencies that serve this population.

“Adoption of “people first” language by the federal government encourages the general public to follow suit and is a major step forward in changing attitudes, which will ultimately result in increased opportunities for people with I/DD to be fully included in society,” Berns said.

The Arc Invited to White House Meeting on ‘the R-word’

Washington, D.C. – The Arc of the United States (The Arc) has been invited to join a meeting at the White House today with other disabilities rights advocates to discuss the controversy around White House Chief of Staff Rahm Emanuel’s use of “the r-word.”

Peter V. Berns, Chief Executive Officer of The Arc, wrote a letter to Rahm Emanuel pressing for White House support of Rosa’s Law. This legislation would change the term “mental retardation” or “mentally retarded” to “intellectual disabilities” in several federal statutes such as education and employment laws.

WHO: Peter V. Berns, Chief Executive Officer of The Arc; Andy Imparato, American Association of People with Disabilities; Hannah Jacobs, parent; Julie Petty, self-advocate; Tim Shriver, Special Olympics; and Ricardo Thornton, self-advocate.

WHAT: Meeting with disabilities advocates to discuss Chief of Staff’s use of “the r-word.”

WHEN: TODAY, Wednesday, February 03, 2010 at 2:00 p.m.

The Arc Condemns White House Aides Use of ‘R-Word’

Washington, DC–Reports that White House Chief of Staff Rahm Emanuel used an epithet relating to people with intellectual and developmental disabilities is both shocking and disappointing.

According to a Wall Street Journal story on an embattled White House, “Some attendees said they were planning to air ads attacking conservative Democrats who were balking at Mr. Obama’s health-care overhaul. ‘F—ing retarded,’ Mr. Emanuel scolded the group, according to several participants.” We hope that the Members of Congress in that meeting were equally offended.

This is the second serious verbal miscue by the Administration about people with intellectual and developmental disabilities. President Obama’s unfortunate statement last year on The Tonight Show with Jay Leno, equating his poor bowling performance with that of people with intellectual disabilities, sparked justifiable outrage from people with intellectual and developmental disabilities and their families. The President subsequently apologized for his remarks and disabilities advocates saw it as a teachable moment. Mr. Emanuel’s use of hateful language would suggest that it is the White House staff that needs to be taught a lesson in respect for people with disabilities.

Statements such as these—particularly when used by someone at high level—amplifies pervasive societal attitudes that people with intellectual and developmental disabilities somehow don’t measure up—that their lives are worth less. “Using a slur about people with intellectual disabilities to criticize other people just isn’t right,” said Peter V. Berns, chief executive officer of The Arc of the United States. “For people with disabilities it is disrespectful and demeaning and only serves to marginalize a constituency that already struggles for empowerment on every front,” Berns added.

Disability rights advocates had high hopes for this Administration when the President appointed a Special Assistant to the President for Disability Policy. This was a move that the Administration called: “our first step to ensure that we have a strong advocate for people with disabilities at the highest levels of our Administration.”

The more than seven million individuals with intellectual and developmental disabilities and their families demand an apology for Mr. Emanuel’s use of language that denigrates our constituency. The White House needs to lead by example and demonstrate through words and actions that it is not acceptable to use people with disabilities as a source for ridicule. To condone this language is to deny opportunities for people with disabilities in the workplace, in the community, in school, and in every other quarter of society.

The Arc of the United States strongly supports legislation (S.2781) introduced by Sen. Barbara Mikulski of Maryland that would change the term “mental retardation” or “mentally retarded” to “intellectual disabilities.” Given the two White House incidents of inappropriate use of the term regarding these constituencies, The Arc hopes that the Obama Administration will put its full force behind the enactment of this legislation.