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Proposed Changes to the Definition May Risk Eligibility for Services

From The Arc US

The following is directly from The Arc US e-newsletter. We hope that it is beneficial for you and your family. Take action today!

Background:

The Diagnostic and Statistical Manual (DSM) is published by the American   Psychiatric Association (APA) and covers categories of mental health disorders, medical conditions, and cognitive impairments for both adults and children. The 5th edition of the DSM has been under development for a number of years and will be published in 2013. APA is accepting comments on its draft until June 15.

The APA is proposing to revise the definition of “Mental Retardation”. While The Arc supports replacing this outdated and stigmatizing term, we have several concerns about APA’s proposed new term, “Intellectual Developmental Disorder” and how it is defined. Our comments are based on and incorporate many points from those developed by the American Association on Intellectual and Developmental Disabilities (AAIDD), the oldest interdisciplinary professional association concerned with intellectual disability and the leader in the terminology and classification of the condition now known as “intellectual disability.”

Why the DSM Definition is So Important

Health care service providers use the manual as a tool for assessment and diagnosis and to better understand a client’s potential needs. Clinicians also use it   to classify people for billing purposes, since governments and many insurance   carriers require a specific diagnosis in order to approve payment for services.

While some federal programs currently use their own diagnostic criteria for   intellectual disability (such as IDEA, Social Security), the DSM is very influential. It is the most commonly used diagnostic coding system and agencies may take the new DSM definitions into account when updating their own regulations.

Take Action:

Submit comments to APA by Friday, June   15. See our comments below for reference and please feel free to add information that is specific to your state (such as agencies, laws, and regulations that have adopted the term “intellectual disability”).

How to Submit Comments

Submitting comments is easy, but you must create an account on the APA website:

  1.   Go to http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=384
  2.   Sign in by creating an account (See upper right-hand corner   “Participate” section and click on “New User? Register Now” link)
  3.   Paste your comments in the text box at the bottom of the page
  4.   Plan to use this account again to submit comments on the Autism definition later this week.

Suggested Comments

1)   We recommend that the DSM-5 adopt the term “intellectual disability” to replace “mental retardation,” rather than the proposed “intellectual developmental disorder.”

“Intellectual disability” is the preferred term to replace “mental retardation” as U.S.   laws and regulations are being rewritten. Adoption of the term of “intellectual disability” is well underway in the Department of Education, Social Security Administration, Centers for Medicare and Medicaid Services, Department of Health and Human Services, Department of Justice, Centers for Disease Control and Prevention, and many state government agencies. In fact, “Rosa’s Law” (P.L. 111-256) was enacted in 2010 to replace the term “mental retardation” with “intellectual disability” in federal education, health, and labor laws. Internationally, there is near unanimous usage of the term “intellectual disability.”

Promoting the term “intellectual developmental disorder” is certain to lead to   confusion among those who establish eligibility criteria for the services needed by many children and adults. People with intellectual disability whose diagnosis is the basis for early intervention, health care, training, employment, citizenship, and civil and criminal justice determinations could find their eligibility for services disrupted should this term be used.

2)   We recommend the direct alignment of the DSM-5 definition of “intellectual disability” with the definition used by the American Association on Intellectual and Developmental Disabilities (AAIDD): “Intellectual disability is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18.”

Having the APA and AAIDD, the two most authoritative manuals in the country defining “intellectual disability” using different terminology and different   definitions would cause significant confusion in state and federal eligibility determinations, in service delivery systems, and the courts. In the past, the APA and AAIDD definitions were closely aligned.

3)   We recommend that the DSM-5 operationally define the “developmental period” as ending at the age of 18 years.

The proposed definition of intellectual developmental disorder include the   criterion “All symptoms must have an onset during the developmental period.”   Leaving the age at which the developmental period ends open to interpretation   will cause confusion and result in inconsistent use of developmental periods   across states and jurisdictions. In addition to a reduction in diagnostic reliability, the lack of clear guidance could serve as the basis of denying supportive services and criminal protections to individuals who would otherwise be entitled to them.

4)   We recommend that any changes to the diagnostic criteria for “mental retardation” in the DSM-5 be field tested.

While we strongly support replacing this outdated and stigmatizing term “mental   retardation” that is used in the current version of the DSM, any changes to the diagnostic criteria must undergo rigorous testing in the field in order to ascertain the impact of such changes on the ability to obtain a diagnosis. However, “mental   retardation” was not one of the diagnoses that APA selected for field testing. Any changes to the diagnosis of “mental retardation”, which affects millions of individuals in the U.S. throughout their lives, should not be made without first assessing the feasibility, clinical utility, reliability, and validity of the draft criteria.

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