Issues to consider - Legislation to remove the "R" word

AADMD INFO BLAST - FOR AADMD MEMBERS
From Tamie Hopp regarding a previous Info Blast.
Rick Rader, MD, AADMD

Subject:

Two important issues to consider when changing terminology. Known as "Rule of Construction" and "Savings Clause" which we elaborate on below. We agree in principle with Rosa's Law , but, sometimes the well intentioned stroke of a pen can have unintended consequences.

Followed by a Qualified Support Letter to Senator Mikulski on Rosa's Law. S.2781, from the Government Affairs Committee of www.vor.net. which I (Ed Carraway) am a member.

Dear Dr. Rader, first I want to say hello to you and all at AADMD. We have been recipients of your support during our advocacy for appropriate Dental Care not only here in Florida , but, for all who suffer from Dental Neglect wherever they reside. We thank you for your concerted efforts to lead on this issue. Special hello's to Matt and Henry. Ed and Virginia Carraway


Thank you, Ed, for coordinating this helpful discussion.

As Dr. Miskek Falkoff so wisely stated, the Rule of Construction is the most important aspect of S. 2781. VOR's Government Affairs Committee, on which Ed sits, put together a position on S. 2781 that is generally supportive of the bill, but cautions against anything less than a complete reach for the new terminology. As Dr. Misek Falkoff says so aptly, a broadly worded "Rule of Construction" or "savings clause," can "can anchor rights and duties at the prime portal where they need to be - and independent of subsequent, unanticipated contexts and applications." VOR's position is that S. 2781 meant to offer such protections but due to it some "narrowing" language invites unintended consequence.

Dr. Carll, thank you also for your comments. As Ed notes, VOR had an opportunity in November to address the APA workgroup looking at how to define "intellectual disabilities." The workgroup's chair, Dr. Susan Swedo, offered to share with VOR the proposed language, which she anticipated would be released this month. That's another point we raise in our S. 2781 position paper - that perhaps the bill is premature given that APA's deliberations are still in flux.

Thanks again,
Tamie Hopp
VOR


December 2009
Qualified Support for Rosa’s Law (S. 2781):
Words Matter but Questions Remain

VOR is a national advocacy organization representing individuals with mental retardation and developmental disabilities (MR/DD), and their families.

Given the diversity of persons in the MR/DD community, VOR strongly supports a continuum of quality care options to meet a wide range of needs, from family home, own home, other community-based options, to Medicaid-licensed facility-based care (ICFs/MR).

VOR is the only national advocacy organization representing individuals whose cognitive disabilities, medical needs, and/or behavior challenges are best served in specialized facility-based settings. These specialized homes provide life-sustaining supports that are treasured by individuals and their families.

Summary of Position: Qualified Support for S. 2781, Rosa’s Law

As an organization that has been dedicated to the rights and well-being of individuals with developmental disabilities for more than 25 years, VOR applauds S. 2781’s spirit and intent. To the individuals who have been hurt by the “mental retardation” label, words do matter.

Yet, the sources used to define “mental retardation” in current law and practice are varied and influx, and there is some question whether S. 2781 reaches all federal laws. The unintended consequences of S. 2781, therefore, could well be people falling through the cracks due to this well-intentioned stroke of a pen.

VOR suggests a greatly expanded Rule of Construction to ensure consistent application of the new terminology across all federal laws and, more importantly, greater protection for beneficiaries now and in the future.

Detailed Concerns and Questions

Temporary Salve

Over the past century, our society has made significant strides with regard to the acceptance of individuals with disabilities as people of equal worth and deserving of any level of assistance needed to maximize their societal acceptance and productivity.



Building on these gains, Senator Barbara Mikulski introduced Rosa’s Law to eliminate references to “mental retardation” in federal law to --

“[bring] us out of the dark ages and into a world of evolved sensibilities by retiring an archaic term that equates the person with the disability, and [substitute] it with a term that references the type of disability.” [Dear Colleague Letter, from Sen. Barbara Mikulksi, November 2009].

Despite our compassion and empathy for those harmed by the pejorative use of “mental retardation,” VOR seriously questions whether a new term for “mental retardation” will have the desired impact. Over the last century, people with disabilities and their advocates have been running away from the labels. From cretin, idiot, imbecile, and moron to now retarded, terms will get hijacked by insensitive people. No matter our efforts, people intent on being cruel and insensitive – fortunately the fringe of our society – will eventually turn good terminology into bad. As The Arc-US so aptly stated so many years ago,

[M]any advocates believe Developmental Disability is a better-sounding term than Mental Retardation. However, changing terms will not change the discrimination and stigma that children and adults with mental retardation face . . . Those who insist on using words to hurt others will find a way to use any term in a bad and hurtful manner.” [Today, “White Paper on Terminology,” Fall 1998 (The Arc-US), cited by Mentally Retarded Citizens of Missouri, Inc. (www.rcomo.org)]

Despite these concerns, VOR would support a terminology change as a temporary salve, if not for the much greater long-term risks to eligibility for life-sustaining services.

Long-Term Consequences: Concerns and Questions

It is the diagnosis of “mental retardation,” as defined in law and practice, which links eligible individuals to needed services. Unquestionably, most individuals, lawmakers, and professionals, have embraced “intellectual disability” as the preferred alternative to “mental retardation.” Despite this consensus on terminology, it is how “intellectual disability” is ultimately defined that will matter most, and that question is still very much influx. Consider the following -

Just this Fall, the American Association on Intellectual and Developmental Disabilities (AAIDD) released the 11th edition of its “Intellectual Disability: Definition, Classification, and Systems of Supports.” This is the first edition that has used “intellectual disability” in place of “mental retardation,” yet federal regulations still reference the AAIDD’s 1983 definition and classification’s manual [see, 42 C.F.R. 483.102(b)(3)].

Medical professionals rely on the fourth edition of the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual (DSM-IV) to diagnose “mental retardation.” It is this medical diagnosis of “mental retardation,” which triggers eligibility for early intervention and other related services. APA workgroups are currently amending the DSM, with a fifth edition expected in 2012. DSM-V is expected to eliminate references to “mental retardation” and redefine “intellectual disability.”

Although S. 2781’s “Rule of Construction” (Sec. 4) attempts to preserve rights and eligibility for presently eligible individuals, what about people new to the system? If, in coming years, medical professionals continue to rely on a “mental retardation” diagnosis, will families of special needs infants, diagnosed as having “mental retardation,” be able to readily access early intervention services for children with “intellectual disabilities”? Will these vulnerable infants and children fall through the cracks?

Other questions include whether S. 2781 reaches all federal statutory references to “mental retardation,” including Social Security and Medicaid, and the consequences of a new APA definition of “intellectual disability” that could well be very different than the current definition of “mental retardation” in federal law and medical practice.

Possible Solutions

Certainly, it is not Senator Mikulski’s intent to impact eligibility. Indeed Section 4 of the bill aims to protect against exactly that concern. VOR suggests, however, that the bill’s Rule of Construction be expanded to, at least, indicate that -

S. 2781 covers any federal statute not expressly mentioned in the bill, to ensure consistency across federal laws; and

Eligibility for future beneficiaries will not be impacted by this change in terminology.

Making these simple changes to the Rule of Construction would seem to address concerns relating to new definitions of “mental retardation” or “intellectual disabilities” in the future, while also protecting against future beneficiaries falling through the cracks.

Conclusion

History has shown that changing terminology is only a temporary fix, yet eliminating “mental retardation” from federal laws, could have a profound impact on eligibility for critical services if additional care is not taken to protect against this consequence. Thank you for your consideration.