Intellectual Disability

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Ruth Luckasson, JD, Distinguished Professor and Chair, Department of Educational Specialties, University of New Mexico, Albuquerque, talks about the 2009 AAIDD Definition Manual and its applicability to the legal community.
The new 2009 AAIDD definition manual is the result of almost 10 years of work, refining and incorporating the latest research on the definition, classification, and systems of support for people with intellectual disability.

Terminology and classification have always been very important work at AAIDD. Looking at the history of the organization’s definition work over close to 100 years, one can track the learning of the profession, the research in the profession, the understanding of the citizenship of individuals with intellectual disability in society, and a balance of scientific knowledge and the hopes and desires and humanity of individuals with intellectual disability.

During my involvement over the past few years in the work of AAIDD’s terminology and classification committee, I have seen a constant incorporation of the new knowledge in the field of intellectual disability and a constant incorporation of the hopes and dreams and humanity of people with this disability. So I would describe the new manual as state-of-the-art, up to the minute, and definitive.

Question: Why should a professional concerned with intellectual disability pick up this new definition manual? What can he or she hope to learn from it?

R.L.: That’s a good question, and I would ground my answer in the notion of best practices. Professionals have a duty to their profession, to society, and to the individuals they serve to be up to date, thorough, and grounded in what’s important in their profession.

In order to be grounded in the best practice in one’s profession, one needs to be grounded in the ethics, the standards, and the research-based practice of the profession, as well as in clinical judgment. So I think that a professional should be familiar with and use this material because it represents the research-based practice in the profession and because it is essential to really exhibiting best practices in the field of intellectual disability.

Question: How does the AAIDD definition manual contribute to a legal professional’s understanding of intellectual disability?

R.L.: The manual on the definition, classification, and systems of supports is critical to the legal profession’s understanding of the needs and challenges of people with intellectual disability. Lawyers are the key to assuring that the voice of their client who has intellectual disability is heard in courts by the judges, by juries, and by other participants.

In order for a lawyer to provide really excellent representation of a client with an intellectual disability, the lawyer must understand the three components of the definition of intellectual disability, and especially the five assumptions that are essential to the application of the definition of intellectual disability.

This will assure that the lawyer pays attention to important aspects, such as the significantly sub-average intellectual functioning or the limitations of adaptive behavior. Also, I think the proper use of the definition will help the lawyer avoid incorrect stereotypes and prejudices that might undermine the representation of this client.

The understanding of intellectual disability is critical in both criminal and civil cases as well as in discrimination and human rights cases. Civil cases could deal, for example, with guardianship or with admission and periodic review to services or with estate planning, where the individual wants to plan where their assets will be distributed in the event of their death, or with health care and end-of-life choices.

In addition, there are criminal justice cases in which a client might have an intellectual disability, including cases where the client might be accused of committing a crime and cases where the individual with an intellectual disability has allegedly been victimized, either because of the disability or because the disability interacts with the victimization in some way.

Question: How Can the Manual Help the Legal Profession to Better Serve Persons with Intellectual Disability?

R.L.: For justice and fairness, it’s critical that the person’s intellectual disability be understood. The definition manual can help the lawyer avoid incorrect stereotypes and prejudices and analyze the relationship between aspects of the disability and the legal principles that are involved in a case, such as consent or liberty.

One of the challenges for a lawyer in representing a client who has an intellectual disability is to really analyze the relationship between the disability and the justice issues.
For example, a very common legal question is whether the individual consented or whether the individual was competent. Also, questions about the individual’s liberty, equality, life, and property—all those legal issues for a client who has an intellectual disability—can be affected by that disability.

The use of the definition manual can help the lawyer avoid devaluation of the client. It can help to fight any inclinations to assume, wrongly, that the individual with intellectual disability is not valued by society or is not important—or that what happens to these individuals doesn’t matter.

To summarize, I think it’s critical for a lawyer or another legal professional to really understand the definition and the assumptions in order to zealously represent their client.
The new definition manual contributes to a legal professional’s understanding of the disability, and it’s important because it makes real and complete an individual’s claims to full citizenship and to human rights. It honors their legitimate expectations that they will receive justice and fairness in their society. I think it’s essential for legal professionals to thoroughly understand what intellectual disability is, how it’s classified, and what kind of supports the person needs.

Question: Are there sources of information or opportunities in addition to the manual through which legal professionals can gain more of this understanding?

R. L.: While the main resource for a lawyer to really understand the definition of intellectual disability and the assumptions would be the 11th edition of the American Association on Intellectual and Developmental Disabilities manual, there are two additional resources. Clinical Judgment isa book that explains how these recommendations are developed, and theUser’s Guide, which was published several years ago, still has important information that applies to the current definition.

To really learn about intellectual disability, I think a lawyer would also want to consult with individuals with intellectual disability or their families and with professionals in the area of intellectual disability. Lawyers could also work through major organizations such as AAIDD or the ARC, both of which have excellent Websites that can help in this area.

Question: In the new manual, you talk a lot about the role of clinical judgment and critical thinking skills in determining if a person has intellectual disability. What is clinical judgment? How does one acquire these skills, and how important are they in the diagnostic process?

Clinical judgment is very important in applying the definition of intellectual disability. It’s important in the diagnosis of intellectual disability, in classification, and in planning supports for an individual with intellectual disability.

Clinical judgment, as AAIDD defines it, is a special type of judgment rooted in a high level of expertise in intellectual disability and of experience with people who have intellectual disability. We say that it emerges from extensive data and that there has to be substantial exploration before clinical judgment is used.

According to AAIIDD, clinical judgment is systematic, it’s formal, and it’s transparent.
That means that it’s used in a logical way that can be described clearly and in such a way that other people can thoroughly understand how the clinician arrived at this judgment.

Clinical judgment uses several important strategies. These include clearly stating the question, conducting a thorough social history of the individual, conducting a broad assessment, and then synthesizing all of the information into a recommendation.

 In the book, Clinical Judgment, AAIDD stresses that the individual using clinical judgment must avoid errors in thinking. Such errors are very common to all of us as we make judgments or decisions, but AAIDD calls on clinicians to be aware of those potential errors in thinking and to strategize to avoid those errors.

To summarize, clinical judgment is important in diagnosis, classification, and planning supports. It enhances the quality, validity, and precision of a recommendation.

Question: The AAIDD manual talks a lot about people with intellectual disability with higher IQs, who constitute about 80 percent to 90 percent of the cases of people diagnosed with intellectual disability. Can you highlight the best practice recommendations in the manual for professionals to realize the potential and reduce the suffering of this “forgotten group” in society?

R.L.: This group of people with higher IQs doesn’t typically have the physical markers or the physical indicators that would alert someone to the fact that they have an intellectual disability. And this very lack actually contributes to the challenges they face.

Because they don’t have physical markers, the societal expectations of them are usually higher. And when they can’t meet those expectations, society can blame them, or perhaps they even blame themselves for it. So they are often blamed for their failures in the way that perhaps a person with physical indicators of the disability might not be.

People within this group are often tempted to try to hide their disability. This adds to their problems and in fact can really affect their legal representation. For example, if they attempt to hide their disability from their lawyer, it’s going to sabotage their representation.

Perhaps people within this group have been incorrectly denied supports because it was mistakenly thought that they could do without them if they “really tried.” Or perhaps people within this group have rejected the supports because they think that the supports will cause them to be stigmatized as having an intellectual disability.

In our society, this group of people with intellectual disability with higher IQs is very prone to poverty and lack of education. They are prone to problems in employment, in getting appropriate housing, and in accessing health care, as well as to problems getting the kinds of supports they might need to raise their children properly or develop relationships or access the help they need in order to have a personally satisfying life.

Question: Is this new material? Are there any best practices outlined in the manual to help work with this group that are different from previous manuals?

R.L.: In the 11th edition, the new manual, individuals who have higher IQs are described in detail for the first time. This is a new section to the manual. And in addition to describing the current state of challenges for people with intellectual disability with higher IQs, there are recommendations about how they can be supported and assisted.

As with all people with intellectual disability, one of the keys is a thorough diagnosis and a real analysis of the individual’s functioning according to the guidelines of AAIDD.
In addition, I think this is an area in which the choice of classification systems becomes especially critical.

Using a classification system that looks at their needs for supports in their ordinary lives will be a huge help in really serving these individuals. On the other hand, I think it is not useful to use an older classification system that classifies by IQ, such as referring to individuals in this group as being “mildly” intellectually disabled. The classification system that incorporates the term “mild” does not adequately capture the disability of these individuals.

Question: Do professionals themselves face particular challenges when dealing with this high-functioning group? By following the manual, will professionals be better able to work with this group of people?

R.L: Following the manual and really applying the definition of intellectual disability will help professionals in this area. One of the challenges in diagnosis of individuals with intellectual disability with higher IQs is that, sometimes, incorrect stereotypes on the part of the evaluator can interfere with genuinely seeing the disability of the person.

So by formally and systematically using the definition and using good clinical judgment, the evaluator can better avoid the mistaken stereotypes, can spot the individuals’ attempts to hide their disability, and can more thoroughly analyze their support needs so that they do have a chance for a more satisfying, safe life.