[Federal Register Volume 78, Number 148 (Thursday, August 1, 2013)]
[Rules and Regulations]
[Pages 46499-46502]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2013-18552]
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SOCIAL SECURITY ADMINISTRATION
20 CFR Parts 404 and 416
[Docket No. SSA-2012-0066]
RIN 0960-AH52
Change in Terminology: ``Mental Retardation'' to ``Intellectual
Disability''
AGENCY: Social Security Administration.
ACTION: Final rule.
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SUMMARY: This final rule adopts, without change, the notice of proposed
rulemaking (NPRM) we published in the Federal Register on January 28,
2013. We are replacing the term ``mental retardation'' with
``intellectual disability'' in our Listing of Impairments (listings)
that we use to evaluate claims involving mental disorders in adults and
children under titles II and XVI of the Social Security Act (Act) and
in other appropriate sections of our rules. This change reflects the
widespread adoption of the term ``intellectual disability'' by
Congress, government agencies, and various public and private
organizations.
DATES: This final rule is effective September 3, 2013.
FOR FURTHER INFORMATION CONTACT: Cheryl Williams, Office of Medical
Listings Improvement, Social Security Administration, 6401 Security
Boulevard, Baltimore, Maryland 21235-6401, (410) 965-1020. For
information on eligibility or filing for benefits, call our national
toll-free number, 1-800-772-1213, or TTY 1-800-325-0778, or visit our
Internet site, Social Security Online, at http://www.socialsecurity.gov.
SUPPLEMENTARY INFORMATION:
Background
On January 28, 2013, we published an NPRM that proposed replacing
the term ``mental retardation'' with ``intellectual disability'' in our
listings that we use to evaluate claims involving mental disorders in
adults and children under titles II and XVI of the Social Security Act
(Act) and in other appropriate sections of our rules.\1\ We are
finalizing the proposed rule without change.
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\1\ 78 FR 5755.
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Why are we changing the term ``mental retardation'' to ``intellectual
disability''?
The term ``intellectual disability'' is gradually replacing the
term ``mental retardation'' nationwide. Advocates for individuals with
intellectual disability 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.
In October 2010, 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.'' \2\
Rosa's Law also required the Federal agencies that administer the
affected laws to make conforming amendments to their regulations.
Rosa's Law did not specifically include titles II and XVI of the Act
within its scope, and therefore, did not require any changes in our
existing regulations. However, consistent with the concerns expressed
by Congress when it enacted Rosa's Law, and in response to numerous
inquiries from advocate organizations, we are revising our rules to use
the term ``intellectual disability'' in the name of our current
listings and in our other regulations. In so doing, we join other
agencies that responded to the spirit of the law, even though Rosa's
Law did not require them to change their terminology.\3\
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\2\ Public Law 111-256.
\3\ See 77 FR 29002 and 77 FR 6022-01.
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Public Comments
In the NPRM, we provided the public a 30-day comment period, which
ended on February 27, 2013. We received 76 comments. Seventy-one
commenters enthusiastically supported our proposal to replace the term
``mentally retarded'' with intellectual disability or another term,
while only five opposed the change. The comments came from national
advocacy and disability rights groups, professional organizations,
disability examiners, parents, and members of the public. We summarized
and paraphrased the significant comments in our responses below. We
carefully considered all of the comments. However, we did not make any
changes to the final rule.
Support for Replacing the Term ``Mental Retardation''
Comment: Seventy-one commenters enthusiastically supported
replacing the term ``mentally retarded'' and 66 commenters supported
the use of the term ``intellectual disability.'' Organizations
including The Arc, The Consortium for Citizens with Disabilities, The
National Disability Rights Network, American Association on
Intellectual and Developmental Disabilities, and National Association
of State Directors of Special Education, Inc., commented in support of
our proposed changes.
Almost all commenters noted the negative connotations and offensive
nature of term ``mental retardation.'' Often, commenters referred to
the word ``retarded'' as ``the R-word.'' Several provided personal
stories about the effect the words ``retarded'' and ``mental
retardation'' have had on a loved one with a disability and expressed
their gratitude for our proposing to remove the term from the listings.
One organization observed that the ``change in terminology is
consistent with the widely expressed desire of people with intellectual
disability for the use of modern, respectful language.'' Another
organization stated, ``We appreciate SSA's commitment to eliminate
outdated terminology and the negative stereotypes that they perpetuate
for people with disabilities.'' One commenter, a graduate student in
vocational rehabilitation, observed how
[[Page 46500]]
``'labeling' an individual can hinder them from participating in the
community . . . Let's give this population the respect and dignity they
deserve.''
Most commenters also supported our proposed adoption of the term
``intellectual disability.'' One organization noted how our adoption of
``intellectual disability'' would ``align SSA's medical listings and
other rules with terminology used by many federal agencies under Rosa's
Law. This change is long overdue and [they] are glad SSA is taking this
important step which will help fight stigma in this country.'' Another
organization observed how ``people will be able to file a claim for
Social Security benefits based on having an `intellectual disability,'
rather than being forced to identify themselves with a label that many
find offensive and degrading.'' In supporting the change, one
individual commenter stated that `` `intellectual disability' is much
more respectful than `mental retardation.' '' Another commented, ``It
is critical that SSA treat applicants respectfully, and using the term
`intellectual disability' is the respectful terminology.''
Response: We are glad that the overwhelming majority of commenters
favored our proposed change and we decided to finalize the proposed
rule without change.
Keep the Term ``Mental Retardation'' in Our Rules
Comment: Three commenters, all parents of adult children with
profound intellectual and developmental disabilities, asked that we not
replace ``mental retardation'' with the term ``intellectual
disability.'' They regard ``mental retardation'' as the medical term
that best describes their children's conditions. The commenters
expressed concern about the ``imprecise and vague'' nature of the term
``intellectual disability.'' They fear that the loss of the term
``mental retardation'' could contribute to a lessening of public
awareness and concern for individuals like their children and possibly
the elimination of the public institutional service support systems
that their children require. A fourth commenter said that while the
change in terminology may make people feel good, the new term is not as
descriptive as the current terminology.
Response: We did not adopt this suggestion. While we appreciate the
concerns expressed in these comments, the term we use to describe a
medical disorder does not affect the actual medical definition of the
disorder or available programs or services. The American Psychiatric
Association (APA) is responsible for naming, defining, and describing
mental disorders.
In the fifth edition of the Diagnostic and Statistical Manual of
Mental Disorders (DSM-5), the APA replaced ``mental retardation'' with
``intellectual disability (intellectual developmental disorder).'' \4\
The APA included the parenthetical name ``(intellectual developmental
disorder)'' to indicate that the diagnosed deficits in cognitive
capacity begin in the developmental period. The authors of the DSM-5
explain that these revisions bring the DSM-5 into alignment with
terminology used by the World Health Organization's (WHO) International
Classification of Diseases, other professional disciplines and
organizations, such as the American Association on Intellectual and
Developmental Disabilities, and the U.S. Department of Education.\5\
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\4\ American Psychiatric Association, Diagnostic and Statistical
Manual of Mental Disorders, Fifth Edition: DSM-5 (Washington, DC:
American Psychiatric Publishing, 2013).
\5\ DSM-5 Intellectual Disability Fact Sheet, APA, 2013. http://psychiatry.org/FILE%20library/PRACTICE/DSM/DSM-5/DSM-5-intellectual-disability-fact-sheet.pdf.
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Use a Term Other Than ``Intellectual Disability''
Comment: Three individual commenters, for different reasons,
offered alternatives to ``intellectual disability.'' One preferred
``developmental disability,'' because it is ``a much more recognized
and acceptable term over `intellectual disability.' '' Another wanted
us to ``make the right change,'' and asked, ``What is wrong with
calling it what it is, `developmental disability,' '' which the
commenter said, ``fits a lot better than either mental retardation, or
intellectual disability.'' Another commenter said that, ``
`intellectual disability' is really no better than `mental retardation'
because it highlights a defect in intellect or IQ. Perhaps a different
choice of words--such as `cognitively impaired'--would be more
appropriate.''
Response: We did not adopt these suggestions. While there are
several terms that could effectively replace ``mental retardation'' in
our current listings and related regulations, we believe that it is
appropriate to use the term adopted by other Federal agencies in
response to a Federal statute.
The Term ``Intellectual Disability'' Is Too Broad and, Therefore,
Unclear
Comment: One commenter observed that there are ``many gradations''
in the type or severity of intellectual disabilities, which the term
``intellectual disability'' could encompass. The commenter was
concerned that blanket use of the new term by various entities could
result in its becoming a ``catch-all term'' in the way that ``mental
retardation'' became a pejorative term. He suggested that we include an
explanation about the breadth of conditions encompassed by the new term
in a definitions section.
Response: We did not adopt this suggestion. In conjunction with
publication of this final rule revising the name of current listings
12.05 and 112.05 and related regulations, we are notifying our regional
offices and state disability determination services regarding the
change in terminology. As explained in the NPRM, however, the change
does not affect how we evaluate a claim based on ``intellectual
disability'' under listing 12.05 or 112.05, nor any of our other
current listings or rules pertaining to other mental disorders.
The Change in Terminology Has Unclear Implications for Disability
Policy and Adjudication
Comment: One commenter suggested that the change in terminology
from ``mental retardation'' to ``intellectual disability'' could
generate confusion among adjudicators, including possible
misinterpretation and misapplication of other listings. Another
commenter expressed concern that the ``prominent use of the term
`disability' in a body system listing'' could prompt some people to
assume or infer that we would find a person disabled under program
rules ``simply because the term `disability' is used . . . to describe,
or designate, an alleged condition.'' A third commenter expressed
concern that, given our legal definition of ``disabled,'' the term
``intellectual disability'' is prone to confuse the lay reader, since
`` `intellectually disabled' persons might not qualify for disability
benefits because of the manner in which SSA defines disability.'' This
commenter suggested that we use a qualifying term ``to distinguish
between ordinary intellectual disability and intellectual disability
grave enough to warrant disability benefits.'' He suggested that a term
such as ``SSA-qualified intellectual disability'' would facilitate
greater lay understanding of the difference between the terms.
Response: We did not adopt these suggestions. The final rule will
apply to only the name of listings 12.05 and 112.05 and will not affect
how we interpret or apply any other listings. We will fully train our
adjudicators on the effect of this name change.
[[Page 46501]]
As we noted in the NPRM, unlike other agencies, we are bound by a
legal definition of the word ``disability.'' The Act and our
regulations define ``disability'' in specific terms and outline the
requirements that an individual must meet in order to establish
entitlement or eligibility to receive disability benefits.\6\ An
individual may have a medically determinable intellectual impairment,
such as intellectual disability, but not be ``under a disability''
within the meaning of the Act. The name of any disorder, whether mental
or physical, in no way directs our findings regarding disability. We
advise all claimants that they will not be found ``disabled'' for the
purposes of our programs until we determine that their impairments
satisfy all of the statutory and regulatory requirements for
establishing disability.
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\6\ Sections 216(i)(1) and 1614(a)(3)(B)-(C) of the Act.
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The Proposed Term Will Become Outdated and Require More SSA Resources
To Change
Comment: One commenter, although appreciating SSA's effort to use
non-offensive terms, expressed the view that doing so is a waste of
agency resources because of the ``euphemism treadmill.'' He noted that
the terms ``mental retardation'' and ``mentally retarded'' were created
in the mid-20th century to replace other terms that had become
offensive. By the end of the century, however, the new terms were also
used in derogatory ways. The commenter predicted that the current
change to ``intellectual disability'' is ``merely another attempt to
create a term without a prejudicial history . . . and that this term
will . . . eventually be used as a pejorative and require more agency
resources to change again.'' He recommended keeping the current
wording.
Response: We did not adopt this suggestion. Speculation about the
future use of the term ``intellectual disability'' or the subjective
value of this change will not dictate our policy. The term
``intellectual disability'' is gradually replacing the term ``mental
retardation'' in both the public and private sectors, and we believe it
incumbent upon us to make this change in order to ensure that our
listings and other rules reflect current terminology.
Regulatory Procedures
Executive Order 12866, as Supplemented by Executive Order 13563
We consulted with the Office of Management and Budget (OMB) and
determined that this final rule does not meet the criteria for a
significant regulatory action under Executive Order 12866, as
supplemented by Executive Order 13563.
Regulatory Flexibility Act
We certify that this final rule will not have a significant
economic impact on a substantial number of small entities because it
affects individuals only. Therefore, the Regulatory Flexibility Act, as
amended, does not require us to prepare a regulatory flexibility
analysis.
Paperwork Reduction Act
While this rule will not impose new public reporting burdens, it
will require changes to existing OMB-approved information collections
that contain the language referenced in this rule. We will make changes
to the affected information collections via separate non-substantive
change requests.
(Catalog of Federal Domestic Program Nos. 96.001, Social Security--
Disability Insurance; 96.002, Social Security--Retirement Insurance;
96.004, Social Security--Survivors Insurance; and No. 96.006,
Supplemental Security Income.)
List of Subjects
20 CFR Part 404
Administrative practice and procedure; Blind, Disability benefits;
Old-Age, Survivors, and Disability Insurance; Reporting and
recordkeeping requirements; Social Security.
20 CFR Part 416
Administrative practice and procedure, Medicaid, Reporting and
recordkeeping requirements, Supplemental Security Income (SSI).
Dated: July 26, 2013.
Carolyn W. Colvin,
Acting Commissioner of Social Security.
For the reasons set out in the preamble, we amend 20 CFR chapter
III as follows:
PART 404--FEDERAL OLD-AGE, SURVIVORS, AND DISABILITY INSURANCE
Subpart P--Determining Disability and Blindness
0
1. The authority citation for subpart P of part 404 continues to read
as follows:
Authority: Secs. 202, 205(a)-(b) and (d)-(h), 216(i), 221(a),
(i), and (j), 222(c), 223, 225, and 702(a)(5) of the Social Security
Act (42 U.S.C. 402, 405(a)-(b) and (d)-(h), 416(i), 421(a), (i), and
(j), 422(c), 423, 425, and 902(a)(5)); sec. 211(b), Pub. L. 104-193,
110 Stat. 2105, 2189, sec 202, Pub. L. 108-203, 118 Stat. 509 (42
U.S.C. 902 note).
Sec. 404.1513 [Amended]
0
2. Amend Sec. 404.1513(a)(2) by removing the words ``mental
retardation'' and adding in their place ``intellectual disability''.
Appendix 1 to Subpart P of Part 404 [Amended]
0
3. Amend Appendix 1 to subpart P of part 404 by:
0
a. Removing the words ``mental retardation'' and adding in their place
``intellectual disability'' wherever they occur;
0
b. Removing the words ``Mental retardation'' and adding in their place
``Intellectual disability'' wherever they occur; and
0
c. Removing the words ``Mental Retardation'' and adding in their place
``Intellectual Disability'' wherever they occur.
Subpart U--Representative Payment
0
4. The authority citation for subpart U of part 404 continues to read
as follows:
Authority: Secs. 205(a), (j), and (k), and 702(a)(5) of the
Social Security Act (42 U.S.C. 405(a), (j), and (k), and 902(a)(5)).
Sec. 404.2045 [Amended]
0
5. Amend the example in Sec. 404.2045(a) by removing the words
``mentally retarded children'' and adding in their place ``children
with intellectual disability''.
PART 416--SUPPLEMENTAL SECURITY INCOME FOR THE AGED, BLIND, AND
DISABLED
Subpart F--Representative Payment
0
6. The authority citation for subpart F of part 416 continues to read
as follows:
Authority: Secs. 702(a)(5), 1613(a)(2) and (d)(1) of the Social
Security Act (42 U.S.C. 902(a)(5) and 1383(a)(2) and (d)(1)).
Sec. 416.645 [Amended]
0
7. Amend the example in Sec. 416.645(a) by removing the words
``mentally retarded children'' and adding in their place ``children
with intellectual disability''.
Subpart I--Determining Disability and Blindness
0
8. The authority citation for subpart I of part 416 continues to read
as follows:
Authority: Secs. 221(m), 702(a)(5), 1611, 1614, 1619, 1631(a),
(c), (d)(1), and (p), and 1633 of the Social Security Act (42 U.S.C.
421(m), 902(a)(5), 1382, 1382c, 1382h, 1383(a), (c), (d)(1), and
(p), and 1383b); secs. 4(c) and 5, 6(c)-(e), 14(a), and 15, Pub. L.
98-460, 98 Stat. 1794, 1801, 1802, and 1808 (42 U.S.C. 421 note, 423
note, and 1382h note).
[[Page 46502]]
Sec. 416.913 [Amended]
0
9. Amend Sec. 416.913(a)(2) by removing the words ``mental
retardation'' and adding in their place ``intellectual disability''.
[FR Doc. 2013-18552 Filed 7-31-13; 8:45 am]
BILLING CODE 4191-02-P