### BRAIN INJURY ASSOCIATION OF WYOMING COMMENTS TO ADVANCE NOTICE OF PROPOSED RULEMAKING ON REVISED MEDICAL CRITERIA 

### FOR EVALUATING MENTAL DISORDERS

**68 Fed. Reg. 12639 (Mar. 17, 2003)**

### 

### Introduction to Comments

The Brain Injury Association of Wyoming (hereinafter "the Association")
appreciates the opportunity to comment on the Advance Notice of Proposed
Rulemaking regarding revised medical criteria for evaluating mental
disorders.

-   Brain Injury Association of Wyoming

The Association was founded in 1990 by a group of individuals who wanted
to improve the quality of life for their family members who had
sustained brain injuries. The Brain Injury Association of Wyoming is the
only nonprofit organization working on behalf of individuals with brain
injuries and their families in Wyoming. The Association includes a
central office in Casper and support groups around the State.

The mission of the Brain Injury Association of Wyoming is to create a
better future through brain injury prevention, research, education and
advocacy. The Association envisions a world where all preventable brain
injuries are prevented, all unpreventable brain injuries are minimized,
and all individuals who have experienced brain injury maximize their
quality of life.

-   Facts about Traumatic Brain Injury

Each year, at least 1.5 million Americans sustain a traumatic brain
injury (TBI) resulting in more than 4,000 individuals sustaining a TBI
on a daily basis. One million people are treated and released annually
from hospital emergency rooms after sustaining a brain injury. Brain
injury claims more than 50,000 lives and leaves more than 80,000
individuals with lifelong disabilities each year. The "silent epidemic"
of brain injury is illustrated best by a 1999 statistic from the Centers
for Disease Control and Prevention (CDC)---***there currently are at
least 5.3 million Americans living with a disability as a result of
brain injury.***

-   Listings Need Updating

In general, the Association believes that the basic structure and design
of the mental impairment listings work for the purpose of assessing
children and adults with TBI. The basic structure and approach to the
listings were developed by an expert panel appointed by the Social
Security Administration (SSA) prior to the publication of the adult
listings in 1985. Based on the adult listings and with significant input
from childhood disability experts, SSA published the children's listing
in 1990.

The Association believes that there are important updates and
refinements that should be included in the listings for adults and
children and we make specific recommendations below. These
recommendations are for refinements within the current structure of the
listings. We do not believe that a major overhaul of the mental disorder
listings is necessary. However, if SSA contemplates a major overhaul of
the listings, we urge that SSA formally adopt an expert panel process
similar to that used prior to the publication of the adult listings in
1985, to ensure careful consideration of all recommendations for and
ramifications of change.

### Introduction to Mental Disorders Listings: Section 12.00

The Introduction to the Mental Disorders Listings, Section 12.00,
provides detailed guidance for all disability adjudicators. As a result,
it plays an important role in the decision-making process for
individuals with TBI, including those whose impairments do not meet a
listing. Our comments, as described below, address: (1) inclusion of
important SSA policies in the Introduction; and (2) recommendations for
policy changes.

We have included proposed language amending section 12.00, which is
attached as Appendix A to our comments.

# Assessment of severity

### Add "extreme" for measuring degree of limitation

In SSI childhood disability claims, SSA looks at six different domains
to determine functional equivalence to a listed impairment. A child is
considered disabled if he or she has "marked" limitations in two domains
or an "extreme" limitation in one domain. We recommend that SSA add
explicit language that an impairment meets the "B" criteria if there is
an "extreme" limitation in one of four "B" criteria, in addition to the
current language requiring "marked" limitations" in two of the "B"
criteria. See App. A.

# Better definition of "marked" and "extreme"

For "marked," we have added language from the SSI childhood disability
regulations that include "standardized testing with scores that are at
least two, but less than three, standard deviations below the mean." 20
C.F.R. § 416.926a(e)(2). See App. A. It is important to stress that
"marked" represents a serious, but less than extreme level of functional
limitation. "Marked" should not be interpreted as requiring little or no
function, such as being unable to feed and clothe oneself without
assistance, or being limited to social interaction with only a few
friends or family members.

For "extreme," we have used the definition in the SSI childhood
disability regulations. 20 C.F.R. § 416.926a(e)(2). See App. A.

We also recommend that the Introduction mention that other measures of
function, including the Global Assessment of Functioning (GAF),
frequently found in the diagnostic portion of mental health records, can
provide useful evidence of overall, serious functional deficits when
adequately documented and can be used as evidence to measure the
severity of functional limitations. However, since it is a "global"
assessment of function, an overall score that appears above the level of
marked may in fact hide deficits in particular areas that meet the
requirements of the listings.

# Evidence issues

-   The importance of recognizing and properly weighing evidence from
    all treating sources

We recommend that SSA provide clear guidance to adjudicators in the
Introduction section of the listings and in separate regulations
regarding the importance of evidence from all treating nonphysician
professionals in assessing the limitations imposed by TBI.

The fact that SSA has established a distinction between "medical" and
"nonmedical" evidence allows adjudicators to consider nonphysician
evidence, even evidence provided by licensed health professionals, to be
less important. As a result, SSA gives it less weight than it deserves,
despite the fact that it is the key information needed to establish the
individual's functional limitations.

We agree that evidence from an "acceptable medical source" is necessary
to establish the existence of a "medically determinable impairment" as
required by the Social Security Act. See 20 C.F.R. §§ 404.1513(a) and
416.913(a).

However, where the regulations go on to say that once a "medically
determinable impairment" is established, evidence from "other sources"
is obtained to show the severity of the impairment and the limitations
it imposes. This creates an artificial distinction. 20 C.F.R. §§
404.1513(d) and 416.913(d). Evidence from treating sources who are
licensed health professionals working under the supervision of a
physician should not be treated differently than that given by a
psychiatrist or psychologist.

These "other sources" include many of the primary sources of treatment
for individuals with brain injury and other mental impairments, e.g.,
nurse practitioners and physicians' assistants, occupational, physical
and recreational therapists, social workers, and educational personnel.
Many individuals with brain injury and other mental illness are seen
infrequently by physicians and usually only for a review of medications.
Other nonphysician professionals are entrusted with day-to-day care and
are qualified and trained to recognize, treat, and evaluate brain
injury.

Often, adjudicators over-rely on physician evidence. Based on our
experience, the non-physician professional sources often are disregarded
or given less weight because they are not physicians, when, in fact,
they are the most important source of evidence about individuals with
TBI.

SSA has recognized that evidence from these "other sources" is crucial
to establishing the severity of mental impairments and the limitations
they impose. For instance, similar concerns were raised in comments
regarding the final rule on mental disorders, 65 Fed. Reg. 50746 (Aug.
21, 2000). In response, SSA noted that, while these non-physician
medical sources are not "acceptable medical sources," "\[s\]uch sources
can, however, provide very valuable information about the severity of an
impairment(s) once \[a medically determinable impairment\] has been
established." 65 Fed. Reg. at 50761. However, in creating this
dichotomy, SSA has relegated the evidence of such professionals to a
catchall status that easily is dismissed.

Another comment noted that many individuals with mental impairments have
no history of being treated for their disorders and that SSA's emphasis
on "medical" evidence "tends to reward those who can afford treatment
while penalizing poorer individuals." 65 Fed. Reg. at 50763. In sharing
these concerns, SSA responded "we consider all evidence in the case
record that is relevant to our assessment of the individual's ability to
function. This includes information from both medical and nonmedical
sources." *Id.* at 50764. In fact, such evidence is often ignored and
individuals with TBI are denied because they have not documented
adequately their limitations with "medical evidence."

For persons with TBI, often the medical records reflect an inaccurate
drastic improvement in health status, because the goal of neurologists,
especially neurosurgeons, is to save lives. Once the person with TBI is
"stable" (i.e., breathing and alive) the medical records may not reflect
accurately the resulting impairments. Non-medical sources, however, do
accurately reflect how a person with TBI is doing on a day-to-day basis.

The same concerns were raised in the final rule on SSI childhood
disability, 65 Fed. Reg. 54747 (Sept. 11, 2000), where such evidence
receives more serious attention. One commenter urged SSA to consider
evidence from social workers, clinical psychologists, and nurse
specialists as "valid and appropriate documentation of disability. *Id.*
at 54765. Recognizing the importance of these medical sources, SSA
responded that "\[e\]vidence from these other health care professionals
helps us understand how a child's impairments affect ability to
function." *Id.* They should be treated no differently than other
medical sources.

-   **Role of nonphysicians and multi-disciplinary concept in
    treatment**

A recurring problem concerning evaluation of persons with TBI is the
treatment of evidence from therapists and other professionals who have
the most contact with patients. The organization of and division of
labor in community mental health centers is such that an individual
patient may see the psychiatrist only once a month to evaluate
medications, often for a very brief visit. On the other hand, the people
most familiar with the case and the individual claimant's functional
limitations are therapists or psychiatric social workers who see the
individual on a daily or weekly basis. Current regulations treat
evidence from such individuals merely as "other evidence," which creates
several problems.

Such evidence is not treated as "medical evidence of record," even
though it is prepared by a professional, included in the psychiatric
case file and an integral part of a physician supervised treatment team.
Indeed, if a psychiatrist were to find the time to write a report for
Social Security he or she would certainly rely upon the day-to-day
description found in the case file prepared by these professionals. We
urge SSA to alter its position and treat such information as medical
evidence when it comes from a licensed clinic or is part of a medically
supervised treatment plan. To do otherwise is to treat low-income
claimants unfairly, since it denigrates the evidence of the people who
know the patient best, merely because they cannot afford treatment in a
setting where most of the work is done by physicians. We are not arguing
for special treatment -- obviously there will be situations in which the
evidence provided is not credited for a variety of reasons, just as
evidence from treating psychiatrists is not always given controlling
weight. We are only urging treatment that affords such evidence its
proper weight. Similar treatment has been afforded in the past to
evidence from members of multi-disciplinary team members, even if they
were not physicians, as long as the evaluations were part of the team's
treatment plan.

Considering such evidence will have several effects. For instance, it
will allow the opinions of those who know claimants best to discuss
whether the claimant meets the C criteria. See discussion of "C"
criteria below in § V.

Second, a similar problem is the failure to afford any special weight to
the opinion of therapists and others as to claimant function.
Oftentimes, the adjudicator will give more weight to consultative
examiners who see the claimant only once, and even worse, to
non-examining state agency physicians who only review the file. Indeed,
the regulations and other SSA policies seem to reinforce this result.
Considering the evidence of a TBI rehabilitation center and all its
personnel as medical evidence of a treating source would do much to
resolve this unfairness, while still giving SSA the flexibility to make
decisions based on the totality of the evidence.

Many of the troubling problems SSA encounters with differential approval
rates from state to state and by race may be attributable to the
inadvertent bias that has crept into the evaluation process as a result
of the failure of the regulations to take into account the different
treatment options available to low income people, especially in states
and cities where public health facilities are hard pressed and strapped
for resources. Recognition of the value of opinions from nonphysicians
would help rectify this problem and make for a fairer climate of
adjudication.

-   **Third-party evidence**

It is not uncommon for some individuals with TBI to underestimate the
impact of their impairments on their functioning. Sometimes an
individual with a TBI will discount significant limitations in order to
appear more like other people, or to improve how other people relate to
him or her. Under such circumstances, third-party input from persons who
live or interact routinely with the TBI claimant is essential.

We recommend that SSA explain in Section 12.00D.1.b that under some
circumstances it would be beneficial to obtain a third-party assessment
of an adult claimant's functioning. Especially for impairments impacting
cognitive abilities, such as with TBI and mental retardation. In these
cases, the claimant may be unable to describe his or her actual
limitations; and for some impairments, like personality disorders or
obsessive compulsive disorder, the claimant may be averse to revealing
any functional limitations. For some claimants with TBI and mental
retardation in particular, it may be necessary that SSA examiners
interview a reliable third party to gain independent knowledge of the
claimant's impairments prior to making a disability determination.

When a claimant is unable to describe functional limitations, or when
the medical evidence suggests more serious functional limitations than
are self-reported, it is necessary to make every effort to obtain a
description of the claimant's typical functioning from a person who
interacts routinely with the claimant to supplement any self-report of
functioning. We recommend that SSA make every effort to obtain
third-party descriptions of functioning whenever a claimant is unable to
describe her limitations, as well as whenever the self-reported
functioning surpasses what would be expected from the medical evidence
of record.

-   **Work and work attempts: Supported work**

We have proposed changes to Section 12.00 regarding supported work
settings. Some adjudicators conclude that attendance in a supported work
setting means that a claimant with a TBI or other mental impairment can
have no significant limitations in social functioning or in
concentration, persistence, and pace merely because the claimant is
engaged in work-like activities. Furthermore, when a claimant with
autism or one of the autistic spectrum disorders is engaged in
supportive work, some adjudicators conclude that the claimant has no
\"qualitative deficits in reciprocal social interaction\" and no
\"qualitative deficits in verbal and nonverbal communication\" merely
because the claimant participates in a supported work program. This
especially is problematic for redeterminations of 18 year olds who may
have been disabled since infancy.

Because there is no vocational assessment involved in the decision
making at the initial and reconsideration levels (and only vocational
expert testimony is available at the administrative law judge hearing
level), it is apparent that supported work employment may be improperly
interpreted to mean that the claimant is not disabled without a full
appreciation for the realities of supportive work settings. Generally,
the need for such a setting for a claimant with a TBI or other mental
impairment would preclude gainful activity in competitive employment.
Moreover, should the claimant's impairment not meet or equal
listings-level severity, a thorough vocational assessment should lead to
a finding of disabled under Step 5 because a claimant in supportive work
settings usually would be unable to learn to do unskilled work within 30
days.

1.  **Consideration of drug use as a symptom of another mental
    impairment**

Drug use may be a symptom of a TBI or other mental impairment. Many
individuals with TBI engage in substance abuse to "self-medicate" or to
cope with resulting behavior problems, anxiety, frustration and
depression. Further, many individuals diagnosed with mental illness also
have substance abuse problems. SSA's rules should provide clear guidance
to adjudicators that the mere fact of substance abuse is not grounds for
denying a claim and that they must distinguish between cause and effect.

The current Introduction does not fully discuss how drug addiction and
alcoholism (DAA) is to be evaluated under the Listings. Although the DAA
provisions were last changed in 1996, SSA has not changed the listing
language, either listing 12.09, which is structured as a reference
listing, or to reference the "materiality" regulations, 20 C.F.R. §§
404.1535 and 416.935. We have proposed language that cross-references
SSA's existing rules which require a determination whether drug
addiction or alcoholism is a contributing factor material to the
determination of disability.

The listing language should reflect the DAA regulations because most
medical advisors at ALJ hearings do not have access to the entire set of
regulations but instead rely on the SSA publication, "Disability
Evaluation Under Social Security," which includes only the listings.

2.  **Treatment affecting signs and symptoms**

For many individuals with TBI, medication will treat the overt signs and
symptoms (such as obsessive compulsive behaviors or anxiety attacks) but
not the resulting functional deficits (often termed "negative
symptoms"). This means that some individuals with TBI on medication may
no longer meet the A criteria regarding signs and symptoms, even though
they have a diagnosis of a listed disorder, but nonetheless they meet
the B criteria regarding function.

Section 12.00 should clarify that when an individual meets the B
criteria with a diagnosis cited in the A criteria, he or she will
qualify, just as others do whose overt symptoms are not controlled with
medication.

3.  **Documentation**

A discussion about school attendance and vocational training has been
added to the Documentation section to provide needed guidance for
evaluating cases of young adults for whom such evidence is particularly
relevant.

4.  **Medical equivalence**

For persons who cannot exactly meet any specific A criteria, but who
meet the B or C criteria, we have expanded discussion of the "B" and "C"
criteria generally to make clear that individuals with medically
determinable impairments who satisfy either Paragraph B or C criteria
are disabled. This establishes a "medical equivalence" standard and such
an approach, like the focal point of the mental disorders listings,
focuses on the impact of the functional limitations, which are assessed
under the B or C criteria.

### "A" Criteria Issues Regarding Specific Listings

1.  **"Marked" as a factor in the "A" criteria**

We begin with the assumption that the "A" criteria should only deal with
the diagnosis, primarily to satisfy the statutory requirement that a
person be diagnosed with a physical or mental impairment. The extent to
which a particular diagnosed impairment is or is not disabling is
largely a function of the B and C criteria. This seems to be the
operating assumption SSA has used in constructing the Listings. However,
for a number of diagnoses, there are functional requirements that have
crept in to the A criteria. Since this is not universal, it gives the
impression that the criteria for certain mental impairment diagnoses
have a higher threshold of disability, when, as we understand it, the
level of dysfunction that leads to a finding of disability should not
vary from one diagnosis to another. To make matters worse, these A
criteria often use the term "marked" to describe the diagnostic symptoms
that are required, adding an additional layer of confusion. Does that
mean the same thing as "marked" in the B criteria, and, if so, what does
it mean to have a "marked" in the A criteria? Does that mean one needs
three marked for particular diagnoses, or does it mean that one already
has a "marked" impairment of function that obviates the need to meet two
others? Examples of this include:

-   12.06A.3/112.06A.5: "Recurrent *severe* panic attacks manifested by
    a sudden unpredictable onset of *intense* apprehension ... occurring
    on the average of *at least once a week*." With symptoms of this
    magnitude how could anyone not have "marked" impairments in
    function? Even panic attacks of less frequency might leave a person
    with a "marked" inability to perform activities of daily living
    (ADLs).

-   12.06 A.4/112.06A.6: "Recurrent obsessions or compulsions which are
    a source of *marked* distress" and 12.06A.5/112.06A.7. "Recurrent
    and intrusive recollections of a traumatic experience, which are a
    source of *marked* distress." Both these requirements of "marked"
    distress confuse the issue and make one wonder if the definition is
    the same for "marked" in the B criteria. Is it possible to have
    marked distress and not meet the B criteria for marked in ADLs and
    social function?

-   12.07/112.07: "Somatoform disorders: Physical symptoms for which
    there are no demonstrable organic findings or known physiological
    mechanisms." Requiring *no* organic findings is inconsistent with
    the DSM and unrealistic since many who suffer from this disorder
    have slight organic findings to which they attach inappropriate
    significance. In fact the capsule definition is inconsistent with
    the criteria in 12.07A.3, which only requires "unrealistic
    *interpretation* of physical signs."

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-   12.07.A.1: "A history of multiple physical symptoms of several years
    duration, beginning before age 30, that have caused the individual
    to take medicine frequently, see a physician often and *alter life
    patterns significantly*." This one subsection contains several
    problems. First, it is clear in the DSM that not all such disorders
    require onset before age 30. (Compare 300.81, Somatization Disorder,
    requiring onset by age 30, with 300.82, Somatoform Disorder, which
    has no diagnostic onset date.) Second, of course, it is unclear how
    life patterns could be altered significantly without that having a
    marked effect on activities of daily living. Third, not all such
    individuals will take medicine frequently, since their physicians
    may refuse to prescribe it. Finally, requiring symptoms of several
    years duration is inconsistent with the Act, if individuals are not
    allowed to provide evidence that such symptoms are projected to
    persist for several years. While duration of symptoms may be
    clinically significant (and even the DSM does not require symptoms
    to last "several years"), the law simply does not require such a
    long duration, especially given how vague "several years" is as a
    standard.

-   12.08: The capsule definition reads: "Personality disorders: A
    personality disorder exists when personality traits are inflexible
    and maladaptive and cause either *significant* impairment in social
    or occupational functioning or subjective distress." This is
    certainly a higher functional hurdle than for other impairments,
    since in addition to meeting these capsule requirements; the
    claimant must also meet the same B criteria as other individuals. In
    addition, the requirement that "characteristic features are typical
    of long term functioning and are not limited to discrete episodes of
    illness" seems inconsistent with B.4 "repeated episodes of
    decompensation."

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-   12.10/112.10: The capsule definition of an Autistic Disorder
    requires a "*markedly* restricted repertoire of activities and
    interests," a phrase repeated in A.1.c. Would this not also satisfy
    a marked restriction in social function? How would this be different
    than a qualitative deficit in reciprocal social interaction, another
    A criteria, specifically, 12.09A.2.a?

-   112.03: The children's schizophrenia listing requires a "*marked*
    disturbance of thinking, feeling, and behavior."

-   112.04: The children's mood disorder listing requires "*markedly*
    diminished interest or pleasure" at two separate places, the capsule
    definition and at 112.04 A.1.b.

-   112.11: The children's ADHD listing requires *marked* inattention,
    impulsiveness, hyperactivity and then refers the adjudicator to the
    B criteria to make further findings of two more *marked* functional
    limitations.

-   12.05/112.05: As we discuss more fully in the section dealing with
    mental retardation, see below, the requirement in the capsule
    section of "deficits in adaptive function," 12.05/112.05, can impose
    a standard of disability that is unrealistically high, in that it
    requires not only a very significant cognitive deficit, but also
    requires an adaptive deficit that is currently ill defined and, we
    fear, may be set too high when the draft listings are promulgated.
    Cognitive deficits such that a person tests at 2 or more standard
    deviations below the norm, are highly predictive of disability and
    should not require a significant additional hurdle to clear.

**2. [Traumatic Brain Injury (TBI)]{.underline}**

-   **Extend the time frame to twelve months in Section 11.00F for
    deferring adjudication**

In Section 11.00F, we recommend that SSA extend the time frame of "6
months" to "12 months" for deferring adjudication if a finding of
disability is not possible within 3 months post-injury. SSA must also
avoid unnecessarily delaying claims that can be favorably decided within
the earlier timeframe.

It is clear in the general neurological medical literature that late
onset impairments often occur post-injury, including seizure activity,
spasticity and cognitive deficits. Twelve months is a reasonable time
frame within which neurologists and neuropsychologists will have a more
accurate picture of a patient's deficits, whether the TBI is mild,
moderate or severe. Twelve months is also a reasonable time period to
allow a TBI patient to undergo more completely a spontaneous recovery.

However, to avoid erroneously denying claims, SSA must be sensitive to
the fact that the true picture of long-term functional limitations
resulting from TBI may not be fully developed within 2 to 6 months
post-injury. The 6-month time period could lead to an erroneous
conclusion of improvement in a patient's health status. For example, a
person with a TBI may be in a coma for one month with severe cognitive
impairments and resulting poor neurological and neuropsychological
testing scores. Within one month, the patient may be out of his or her
coma and may undergo testing. Within another month (now 3 months
post-injury), the same patient may be tested again. Finally, the patient
is tested at 6 months post-injury. When the three-month test scores are
compared to the 6-month test scores, the results could reflect a
significant improvement in health status/scores that could erroneously
reflect a dramatic recovery.

Further, a person coming out of a coma may not be physically stable
enough to undergo a battery of neurological testing at 6 months
post-injury because he or she likely may have motor and attention
difficulties or severe agitation. The 12-month time frame allows a
reasonable period for spontaneous recovery and accurate test results.
Twelve months certainly is a reasonable time frame when one considers
the fact that the "healing" period for persons with TBI could be several
years \-- or never.

On the other hand, SSA must also avoid unnecessarily delaying claims
that can be favorably decided earlier in the process, particularly in
light of the lengthy administrative appeals process. People who
experience TBI often face great disruption in their lives, including the
inability to support themselves financially during the recovery process.
Access to disability benefits can be crucial during this time. Thus, we
recommend that SSA provide clear instructions and criteria to disability
adjudicators on the factors needed to determine which TBI claims can be
favorably decided and which must be deferred.

-   **SSA should add more "A" criteria to Section 12.02, Organic Mental
    Disorders**

The regulations indicate that TBI cases should be evaluated under 12.02,
Organic Mental Disorders, if applicable. However, this listing is sorely
inadequate in describing the vast range of mental impairments often
experienced by TBI patients. The functional sections or lobes of the
brain are divided into the "right" and "left" sides. Each side of the
brain is responsible for different functions. Impairments and general
dysfunction will vary depending upon the site of injury.

We recommend that SSA add the following requirements in addition to
those listed in section "A" or to any other appropriate section in the
Listings:

-   Muscle movement and coordination impairments (including left neglect
    or inattention to the left side of the body and decreased control
    over left-sided body movements)

-   Hearing, vision, taste, smell and touch impairments (including
    visual-spatial impairment and visual memory deficits)

-   Sleep disturbance

-   Personality changes

-   Evidence of a loss of intellectual functioning, apart from evidence
    from formal IQ testing

-   Language impairments (including receptive and expressive language
    difficulties or understanding language and speaking output)

-   Sequencing difficulties

-   Sexual dysfunction or inappropriate sexual behavior

-   Deficit awareness impairments (see discussion below)

Further, we recommend that SSA add "deficit awareness impairments" to
section 12.02 "A" or to any other appropriate section. Deficit awareness
impairment is a condition of a brain injury that prohibits a person from
using cues from the environment and from peers to change strategies in
an attempt to be successful at a work task. Further, deficit awareness
impairments do not allow a person with a brain injury to strategize an
improvement plan.

It is not uncommon for a person with a brain injury to have difficulty
comprehending their deficits and how those deficits affect them day to
day and in the workplace. This lack of deficit awareness is significant
during the recovery process -- extensive rehabilitation may not result
in patient improvements because of deficit awareness or because of
problems in short- and long-term memory.

The lack of awareness in a person with a brain injury stems from the
neurological impairment and often is a consequence of a frontal lobe
injury. The frontal lobe is the part of the brain that has the ability
to "self-monitor" and to assess behaviors and their possible
consequences. A person with a TBI might not know to ask for help at work
or when presented with a new situation because they are not aware that
their deficits will not allow them to be successful performing certain
tasks. In fact, if you ask a person with a deficit awareness impairment
how they may perform a task, the person may greatly overstate or
overestimate their success. The result is an employee returning to work
post-injury who does not ask for assistance or accommodation because he
or she simply is not aware of the impairment.

### 

### "B" Criteria

-   **Revisions to the current criteria**

### 

### We have proposed revisions to section 12.00 (see Appendix A) that would create a separate section that discusses the "B" criteria. Currently, they are discussed in the Assessment of Severity section. By creating a separate section, it allows addition of a section immediately following it that discusses the "C" criteria. While keeping the four current "B" criteria intact, we have recommended language that expands the explanation of each factor, thus providing further guidance for adjudicators:

**1.** **Activities of daily living.** An additional sentence lists ADLs
that are relevant in work activities. These have been incorporated from
activities listed in the Mental Residual Functional Assessment form that
is currently used by some state DDSs.

**2.** **Social functioning.** A sentence has been added that references
to specific activities of social functioning that are relevant in work
settings, also found in the Mental Residual Functional Assessment form
that is currently used by some state DDSs. Another sentence has been
added that incorporates social functioning activities in the SSI
childhood disability regulations.

**3.** **Concentration, persistence or pace.** A sentence has been added
that incorporates activities of concentration, persistence, or pace that
are found in the Mental Residual Functional Assessment form that is
currently used by some state DDSs.

4.  **Episodes of Decompensation.** While we are supportive of the
    retention of this B

criteria, we urge SSA to avoid the use of the sole word "decompensation"
in that such a phrase, as used by most mental health professionals,
means a deterioration so severe as to require hospitalization. A better
phrase would be "deterioration in overall function" or "deterioration or
decompensation" which would include, but would not be limited to, the
more severe notion of decompensation. Certainly, an individual is
disabled long before their mental status is such that they must be
hospitalized repeatedly for extended periods over the course of a year.
While the introductory section reflects a concept of deterioration, the
use of the term "decompensation," without more, in the listing itself,
is misleading both for professionals commenting upon a particular case,
and for adjudicators looking through records for instances of
"decompensation."

In Section 12.00, we also have changed the phrase "highly structured and
directing household" to "intensive supports" to make it consistent with
other language in the introduction defining "highly structured and
supportive" settings. The language is similar to that used in the SSI
childhood disability listing 112.00.F.

-   **Add a new "B" criteria: Communication**

We also urge the adoption of a fifth B criteria, based on the ability to
communicate. In reviewing the DSM-IV, it is apparent that the ability or
inability to communicate efficiently and effectively is an important
measure of the severity of a particular mental illness. While elements
of communication are certainly implicit in assessing social function and
ADLs, they do not get the importance they deserve when mixed with these
important overarching concepts. Instead, the ability to communicate is
often ignored, despite its pivotal importance in obtaining and retaining
substantial gainful activity. Just as the childhood listings recognize
the importance of communication, and afford it its own domain or area,
so too, should the adult listings have a separate B criteria for
communication.

# 

# 

### "C" Criteria

### 

### We have proposed language that amends section 12.00 to create a section that discusses the "C" criteria which allows for greater clarity. See App. A. 

### 

### As discussed in Section II.2, we urge SSA to provide clear guidance to adjudicators regarding the need to properly recognize and weigh evidence from nonphysician professional sources. The current "C" criteria call for a medically documented history of a particular disorder with periods of decompensation. See, e.g., Listing 12.02 C. Especially during periods of remission, mental health clinics are unlikely to afford patients prolonged exposure to psychiatrists, and, during periods of deterioration or decompensation, such individuals are often not in touch with mental health providers on a regular basis. Much more frequently, the only people who will be able to comment intelligently on a claimant's longitudinal history will be therapists, social workers and others who maintain regular contact with patients.

The explicit requirement of a "medically documented history" of
deterioration both serves to relegate the evidence of nonphysician
professionals to second-class status and makes it doubly hard to
establish disability under this criteria. By making an explicit
distinction between the functional evidence allowed in the determination
in part B, and the difference between it and part C, the Listings
underline the distinction between the two types of evidence, and draw a
distinction where none should exist. At the very least, the requirement
of medical documentation should be removed from the part C
determination.

# [Factors Relevant to Disability Determinations]{.underline}

We have proposed a new section called factors relevant to the disability
determination. The factors discussed below, taken from concepts in the
current introductory language, the childhood disability regulations, and
Social Security Ruling 85-15 are, when present, relevant in determining
disability at all steps of the disability sequential evaluation.

1.  **Effects of structured settings.** This has been moved from the
    current 12.00.

2.  **Stress and mental illness.** This section incorporates language
    currently found in Social Security Ruling (SSR) 85-15.

3.  **Extra help.** This section reflects a similar section in the SSI
    childhood disability regulations.

4.  **Unusual settings.** This section expands on a sentence in current
    section 12.00E and adds more expansive language from the SSI
    childhood disability regulations.

5.  **Effects of medication.** This section is modeled on the SSI
    childhood disability regulations. It also incorporates language from
    the current section 12.00G.

6.  **Effects of treatment.** This section is the current 12.00H.

### Mental Retardation

1.  **Diagnosis**

**Mental Retardation A and B Criteria** -- We strongly support the
continued use of Sections 12.05 A. and B. criteria and Sections 112.05
B. and C. criteria to determine disability for people with mental
retardation. The provisions are practical and provide clear criteria for
determining eligibility for people with the most severe levels of mental
retardation.

**Standard Error of Measurement (SEM)** -- We urge SSA to give
applicants the benefit of the doubt and include as disabled those
individuals whose IQ scores place them within the SEM on standardized
tests. The use of hard and fast IQ scores may appear to make the process
simpler, but it actually raises the risk of erroneous exclusion and the
resulting failure to assist individuals with severe impairments.

**Age of Onset** -- The current listing uses onset before age 22 as the
part of the capsule definition/diagnosis for mental retardation under
Sections 12.05 and 112.05. We urge SSA to retain the use of age 22 in
establishing the capsule definition for eligibility under the mental
retardation listing. This is consistent with the onset age of 22 used in
the statute for eligibility for disabled adult child benefits.

# Severity

**Sections 12.05C. and D. and Section 112.05D.** **Severity Level** --
Mental retardation is a significant and severe disability, including for
those people whose IQs test in the range of 60 to 70. To meet the
capsule definition of mental retardation, the individual has to show an
IQ level at least two standard deviations below the mean
([\<]{.underline} 70) along with deficits in adaptive functioning
consistent with the measured IQ. We believe that these two requirements
meet the general requirements of having "marked" limitations in two
areas (cognition and adaptive functioning). Sections 12.05C. and D.
require an additional showing of another impairment imposing significant
limitations or a showing of marked restrictions in two listed areas of
functioning in order to qualify under the listing. The additional
requirements in C. and D. seem to require that individuals assessed
under these sections must meet a higher standard than marked limitations
in two areas. We urge SSA to re-evaluate the requirements in these two
sections because they are inconsistent with the legal framework of the
listings and set excessively high standards for two of the four groups
of individuals who may qualify with mental retardation. At the very
least, we urge the continued interpretation of the requirement of a
second, "significant" impairment to require only one that imposes some
additional restriction on function.

2.  **National Research Council (NRC) Recommendations**

The National Research Council was commissioned by SSA to evaluate
various aspects of coverage for people with mental retardation. The NRC
study resulted in a number of recommendations that were presented to SSA
in 2002. Here we discuss selected NRC recommendations.

**Assessment under other listings** -- We disagree with the NRC's
recommendation that adjudicators "do not need to determine the presence
or absence of mental retardation in individuals who are eligible for SSI
due to other neurodevelopmental or psychiatric disabilities." In fact,
we think it is important that adjudicators establish a complete record
for individuals who would qualify by meeting the listing for mental
retardation. If mental retardation is present, then adjudicators should
explore it as the primary diagnosis. As future changes are made to the
listings and other relevant regulations, a complete disability
determination record is the best protection for people when they are
assessed under the medical improvement standard at the time of their
continuing disability reviews (CDRs).

**Permanent Presumptive Disability** -- We support the NRC
recommendation to remove work disincentives by "considering individuals
with mental retardation to be presumptively re-eligible for benefits
throughout their lives, if they have previously received benefits,
subsequently secured gainful employment, and then lost that employment."
While this may require legislation, especially in the case of people
with mental retardation receiving disabled adult child (DAC) benefits,
we encourage SSA to propose and to support such legislation. Such a step
would remove some major barriers to work for people with the life-long,
significant impairment of mental retardation, and ultimately reduce the
reliance of many on the SSI and Title II disability programs.

**Composite Scores** -- SSA has a long standing policy that the NRC did
not directly address when it took the position to use composite IQ
scores, rather than the lowest of the full scale, performance or verbal
subtests. We urge SSA to reject the NRC's recommendation regarding the
use of partial or full-scale/composite scores on IQ tests. Composite
scores are essentially rough averages that may hide significant
information regarding an individual's disability. As a composite, the
score is not a valid descriptor of the individual's limitations. The low
score has significance and should not be lost in the composite when
assessing a particular individual. The lower scores, if not explained by
other evidence in the file, should prompt further CE evaluation of the
individual's functioning. As is clear from the NRC's note regarding the
dissenting view of panel member Keith Widaman, the NRC recommendation is
controversial and we oppose its adoption.

**Adaptive Behavior Scores** -- The NRC recommended using 1 standard
deviation below the mean in two adaptive behavior areas or 1.5 standard
deviations below the mean in one adaptive behavior area as the measure
for ascertaining deficits in adaptive behavior that, along with IQ
levels 2 standard deviations below the mean, establish listings-level
mental retardation. We endorse this NRC recommendation regarding
adaptive behavior scores.

**Use of Standardized Behavior Assessment** -- We agree with the NRC's
recommendations that SSA should support more research and development of
standardized measures of adaptive behaviors. While the use of
standardized measures could improve the outcomes of disability
determinations for people with mental retardation, we recognize that
such measures are not currently available to the degree necessary for
SSA to make such testing a requirement. Should SSA decide to require the
use of standardized testing for adaptive behaviors, we believe that SSA
must be prepared to pay reasonable fees for CEs to conduct such
assessments when the information is not available in the record.

> **Impact of Modifications \--** The impact of any modifications that
> SSA makes to the mental retardation listing must be applied only to
> new applicants, not in continuing disability reviews and not to 18
> year olds in SSI. As the result of a suggestion made in the National
> Research Council's report to SSA, we believe it is important to
> directly address whether any changes made by SSA would be applicable
> to continuing disability reviews and to 18 year olds who have been
> receiving SSI children's disability benefits. Specifically, the NRC
> believes that its recommended standards for IQ and adaptive behavior
> should apply also to redeterminations.

While SSA has the ability to use any changes in the listings when
redetermining eligibility for benefits in a continuing disability
review, should the finding be that the person does not meet the new
listing, SSA must apply the old listing to determine if the person will
continue to be eligible for benefits. While we urge SSA to limit the
changes made to 12.05, it will be essential that any changes to the
Listing explain that there will be no impact on current recipients whose
conditions have not medically improved and that SSA will rely on the
listing in effect at the time the individuals were determined to be
eligible. The consequences of not taking this step could be disastrous
in the individual lives of many people with mental retardation who
depend upon SSI or Social Security benefits for survival and would
violate the medical improvement standard included in the statute at 42
U.S.C. § 423(f).

> **4. Testing**

**Records of School-Based Testing** -- When children have Individualized
Education Programs (IEPs) in their school files, it is quite likely that
the school also has records of testing done to assess the student for
the school system. We recommend that SSA routinely request these test
results as part of the applicant's file.

**Age of Tests** -- There are several issues regarding old test scores
and out-of-date tests that we believe must be addressed.

-   We recommend that SSA use only Consultative Examiners for IQ or
    adaptive behavior tests who use current instruments. Instruments are
    out-of-date if a newer version or edition, with updated norms, has
    been published.

-   SSA should not discount older scores or scores obtained with out of
    date instruments in a claimant's file since many claimants do not
    have access to state of the art testing and evaluation and should
    not be penalized for their lack of access. The older test should
    establish valid history and SSA should ensure that a contemporary
    test is administered, if necessary, to determine current
    eligibility.

-   If a test in a claimant's file was out of date at the time of its
    administration, SSA should not reject the test entirely; but rather,
    should make a determination that a new test might be required and
    order that one be administered at SSA's expense by a consultative
    examiner

### New Listings Needed

We suggest adding several new listings because of the prevalence of
these disorders and the potential to miss them.

1.  **Post-Traumatic Stress Disorder (PTSD) to 12.06A and 112.06A**

PTSD, is a condition found in many members of the armed forces and other
victims of and witnesses to violence, terrorism and other traumatic
events. PTSD frequently is seen in patients with TBI. Currently, this
condition it is buried with 12.06, where it is hard to find, in part
because it is never named and only some of the diagnostic criteria of
DSM-IV are included.

PTSD is characterized by re-experiencing a specific ordeal in the form
of flashback episodes, memories, nightmares, or frightening thoughts,
especially when exposed to events or objects reminiscent of the original
trauma. Medically documented findings of at least 3 of the following
should be included:

a.  emotional numbness

b.  sleep disturbance (e.g., nightmares, insomnia, restless sleep, fear
    of falling asleep)

c.  hypervigilance

d.  startle response (e.g., startle reaction to sudden noise or flash of
    light)

e.  easy irritability or outbursts of anger

f.  feelings of intense guilt

g.  avoidance of reminders or thoughts of a traumatic event

h.  flashbacks

i.  problems of memory, thinking, or concentration

j.  substance abuse originating post-trauma and ingested to suppress
    memories of the traumatic event with intermittent periods of
    sobriety and increased use at anniversaries or reminders of the
    traumatic event.

**2. Eating Disorders**

We strongly suggest the addition of a particular Listing for Eating
Disorders, which have been recognized to be a serious problem for many
teens and adults.

Add Listings 12.13A & 112.13A:

**Eating Disorders (Anorexia Nervosa, Bulimia, Other Types)**. *Anorexia
nervosa* includes two subtypes that describe distinct patterns: 1)
Restricting Type maintains low body weight by restricting food intake
and increasing activity (i.e. compulsive exercise); and 2)
Binge-Eating/Purging Type restricts food intake but also regularly
engages in binge eating and/or purging behaviors (i.e. self-induced
vomiting or abuse of laxatives, diuretics, enemas). 

a\. hyper-sensitive about body image

b\. intense fear of weight gain

c\. obsessive dieting or starvation (e.g., hoarding food, concealing
food, avoiding others who are eating)

d\. anhedonia (inability to gain pleasure from normally pleasurable
experiences)

e\. obsessive exercise, calorie counting

f\. self-induced vomiting or excessive use of laxative, diuretics,
and/or diet pills

g\. amenorrhea in women not related to another hormonal imbalance of
other etiology

h\. loss of body weight 10% or greater not related to another hormonal
imbalance of other etiology

*Bulimia Nervosa* means recurrent episodes of binge eating, within a
discrete period of time (e.g., with a few hours), an amount of food that
is greater than most people would consume during a similar period, under
similar circumstances; or lack of control over eating (e.g., a feeling
that one cannot stop eating or control how much one eats); or recurrent
inappropriate compensatory behavior in order to prevent weight gain
(e.g., self-induced vomiting, misuse of laxatives, diuretics, enemas, or
other medications, fasting, or excessive exercise) occurring at least
twice a week for 3 months.

3.  **Add Attention Disorders (ADHD, ADD) for adults**

This new listing, §12.11, would mirror the children's ADHD Listing, §
112.11.

12.11 Attention Deficit Hyperactivity Disorders: Characterized by
inappropriate degrees of inattention, impulsiveness and hyperactivity.

The required level of severity for these disorders is met when the
requirements in both A and B are satisfied.

A. Medically documented findings of at least two of the following:

1\. Marked inattention; or

2\. Marked impulsiveness; or

3\. Marked hyperactivity;

AND

B. Resulting in at least two of the following:

1\. Marked restriction of activities of daily living; or

2\. Marked difficulties in maintaining social functioning; or

3\. Marked difficulties in maintaining concentration, persistence, or
pace; or

4\. Marked difficulties in sustaining gainful employment.

4.  **Alzheimer's Disease**

Alzheimer's disease is the most common cause of dementia, accounting for
between 50 to 60% of all cases. Family practitioners, internists or
neurologists typically diagnose individuals with Alzheimer's disease.
Yet, there is a high prevalence of neuropsychiatric symptoms in dementia
and therefore many of these individuals are referred to psychiatrists
and other mental health providers for assessment, diagnosis and
treatment for these symptoms.

Individuals with Alzheimer's see a variety of practitioners for
treatment, including internists, geriatricians, neurologists and
psychiatrists, depending on the stage of illness, the presentation of
symptoms, the severity of symptoms and secondary complications. There
are two different sets of diagnostic codes for Alzheimer\'s disease and
related dementias. In the DSM-IV, the 290 series identifies various
dementia codes based on the specific dementia and etiology. In the ICD-9
codes, the 331 series identifies Alzheimer\'s disease and related
dementias as a general medical condition (Axis III). Given that the
DSM-IV and ICD-9 codes recognize that these conditions may be both
neurological and mental disorders, the listings also should reflect
these classifications.

We recommend that Alzheimer's disease be included in 11.15, which is
currently reserved, or in 11.17, degenerative disease. These sections
should be cross-referenced to 12.02, which should continue to include
dementias due to other etiologies. Although all dementias are
characterized by development of cognitive deficits and memory
impairment, the symptoms and cause vary and should continue to be
reflected in the listings. The proposed listing is consistent with the
DSM-IV manual and was developed with input from clinicians from Mayo
Clinic.

# Alzheimer\'s disease -- 11.15 or 11.17

A. The gradual onset with progressive and deteriorating course of
multiple cognitive deficits manifested by both:

1.  memory impairment, and

2.  one or more of the following cognitive disturbances:

a\. aphasia (loss or impairment of the power to use or comprehend words)

b.  apraxia (loss of the ability to execute or carry out learned
    movements)

c.  agnosia (inability to recognize and identify familiar objects or
    persons)

d.  disturbance in executive functioning

AND

B. Resulting in at least one of the following:

1.  Marked restriction of activities of daily living, or

2.  Marked difficulties in maintaining social functioning, or

3.  Marked difficulties in maintaining concentration, persistence, or
    pace.

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5.  **Autism**

There are several types of Pervasive Developmental Delay ("PDD"), only
some of which would diagnostically correlate with the A criteria under
Listings 12.11 and 112.11. For some children with atypical PDD, or with
Asperger's, for instance, the A criteria requirements are too broad. The
preamble to the final rules adding Listings 12.10 and 112.10, published
in August 2001, explained that individuals diagnosed with co-morbid
autism and mental retardation "can be evaluated under either listing."
65 Fed. Reg. at 50754.

This directive from the Preamble to the final regulations does not
address the issue of the interrelation between other PDDs and mental
retardation. Moreover, it is unusual for autism to be diagnosed in very
young children, even though the behaviors and functional limitations
associated with PDD may be identifiable in infancy. As a result of this
apparent confusion, some adjudicators eschew these listings when
presented with an atypical developmental disorder and inappropriately
rely on Listing 12.05 or 112.05 instead. Using Listing 12.05 or 112.05
may be appropriate for many children with autism, but not some with
PDDs. Although many with autism have significant limitations in
cognitive development at the mental retardation level, some do not, and
children with other PDDs may have normal cognitive development, only
later regressing.

When the record contains results from intelligence testing but these
exceed the requirements of 12.05 and 112.05, the PDD may not be fairly
assessed if the claimant is one of those whose PDD has not adversely
affected cognitive development. In addition, it is difficult to obtain
reliable measures of cognitive development for very young children.
Moreover, diagnosing autism (a question of ruling out "other PDD") is
difficult prior to ages 2 or 3, so it is not uncommon for the initial
diagnosis of an infant with serious limitations to be PDD that only
later is recognized as autism. Similarly, some of manifestations of PDDs
begin later than 3 years of age (e.g., disintegration disorder generally
manifests between 3 and 10 years of age after somewhat normal
development earlier). Adjudicators need to be aware of these
considerations related to the claimant's age and the corresponding
difficulties with making accurate diagnoses of autism and the autistic
spectrum disorders.

It is imperative that the PDD component of the Listings encapsulates the
PDDs more generically. Specifically, the "verbal and nonverbal"
descriptor may not apply to some children with Asperger's or Childhood
Disintegrative Disorder, which do not generally affect both domains of
communication, and these descriptors may not apply to some children with
Rett's Disorder, which generally affects motor, language, and social
skills. We recommend that the descriptor for these listings include the
phrase "autistic spectrum disorders" to clarify the relationship of PDDs
with autism. For these disorders, we also recommend the use of more
general descriptors of qualitative deficits without the specific
limitation in verbal and nonverbal skills, and we recommend that there
is a disjunctive connection with "imaginative activity" so as to capture
the very young child's limitations prior to any expected development of
the other communication skills. And, following parallel recommendations
earlier, we recommend striking the modifier "markedly" from the A
criteria.

12.10 *Autistic Disorder and autistic spectrum disorders (other
pervasive developmental disorders):* Characterized by qualitative
deficits in the development of reciprocal social interaction, in the
development of verbal and nonverbal communication skills, and in
imaginative activity. Only where evidence of co-morbid mental
retardation exists, evaluate under Listing 12.05. Often with autism,
there is a restricted repertoire of activities and interests, which
frequently are stereotyped and repetitive.

1\. The required level of severity for these disorders is met when the
requirements in both A and B are satisfied.

A. Medically documented findings of the following:

1\. For autistic disorder, all of the following:

a\. Qualitative deficits in reciprocal social interaction; and

b\. Qualitative deficits in verbal and nonverbal communication and/or
imaginative activity; and

c\. Restricted repertoire of activities and interests;

OR

2\. For other pervasive developmental disorders, both of the following:

a\. Qualitative deficits in reciprocal social interaction; and

b\. Qualitative deficits in communication or imaginative activity;

AND

B. Resulting in at least two of the following:

1\. Marked restriction of activities of daily living; or

2\. Marked difficulties in maintaining social functioning; or

3\. Marked difficulties in maintaining concentration, persistence, or
pace; or

4\. Repeated episodes of decompensation or deterioration, each of
extended duration.

112.10 *Autistic Disorder and autistic spectrum disorders (other
pervasive developmental disorders):* Characterized by qualitative
deficits in the development of reciprocal social interaction, in the
development of verbal and nonverbal communication skills, and in
imaginative activity. Where evidence of co-morbid mental retardation
exists, evaluate under Listing 12.05 or 112.05, as applicable. Often
with autism, there is a restricted repertoire of activities and
interests, which frequently are stereotyped and repetitive.

1\. The required level of severity for these disorders is met when the
requirements in both A and B are satisfied.

A. Medically documented findings of the following:

1\. For autistic disorder, all of the following:

a\. Qualitative deficits in reciprocal social interaction; and

b\. Qualitative deficits in verbal and nonverbal communication and/or
~~in~~ imaginative activity; and

c\. Restricted repertoire of activities and interests;

OR

2\. For other pervasive developmental disorders, both of the following:

a\. Qualitative deficits in reciprocal social interaction; and

b\. Qualitative deficits in communication or imaginative activity;

AND

B. For older infants and toddlers (age 1 to attainment of age 3),
resulting in at least one of the appropriate age-group criteria in
paragraph B1 of 112.02; or, for children (age 3 to attainment of age
18), resulting in at least two of the appropriate age-group criteria in
paragraphs B2 of 112.02.

**IX.** **[Recommendations of the General Accounting Office
(GAO)]{.underline}**

Under no circumstances should SSA incorporate the GAO proposals in these
Listings. Many of the pharmaceutical and technological advances upon
which GAO bases its recommendations are neither uniformly available nor
affordable to people with disabilities across our Nation.

In its August 2002 report, *SSA and VA Disability Programs:
Re-Examination of Disability Criteria Needed to Help Ensure Program
Integrity,* GAO-02-597, the GAO raises a number of concerns about how
disability is determined in both DI and SSI (as well as VA programs, not
at issue here). Some of our comments in other sections of this document
are relevant to the GAO's recommendations to SSA as well.

For example, GAO notes that "...SSA does not automatically evaluate
individuals applying for benefits under corrected conditions. Thus, it
is our belief that the programs themselves have not been fully updated
to reflect scientific advances, because interventions that could enhance
individuals' productive capacities are not, by design, factored into the
disability decision-making process." (page 32) While it some day may be
possible to fairly make such a determination, as a practical matter,
that day can not come until all people with disabilities or other health
conditions can secure the health care they need, including ongoing
prescription drugs, counseling, and treatment. While it is possible for
some people with TBI to work while receiving pharmaceutical treatment
that is responsive to their medical conditions, it is often eligibility
for SSI and therefore Medicaid that makes it possible to secure needed
drugs. For some DI recipients, because Medicare does not include a drug
benefit, these individuals may not even be able to secure needed
treatment while in benefit status. Loss of SSI often means loss of the
very drugs that might make the person employable and therefore less
needy of cash assistance. We urge SSA to ensure that any proposals that
incorporate how SSA will evaluate individuals applying for benefits if
they were "under corrected conditions" make clear that such a
possibility is fantasy --- and could have tragic consequences for people
with TBI or severe mental impairments --- if medical care, including
free or very reduced price prescription drugs, is not readily available
to that specific individual, whether or not he or she is employed after
leaving DI or SSI and for however long as needed to ensure the person
can continue to remain independent of DI and SSI.

### X. Other Listings Issues 

1.  **Functional Equivalence (FE) for Adults**

We urge SSA to replicate and draw from the work of the SSA/AUCD
Children's SSI Project over the past five years and develop a functional
equivalence step to assess adults who do not meet the particular
criteria of specific listings. This recommendation has special
significance for younger adults with mental impairments, particularly
those who have not worked; Steps 4 and 5 in the disability determination
process are inadequate for addressing them. SSA should develop and
implement an effective method to assess adults at the listings level
when their impairments do not fall within specific listings. This could
be done by creating a functional equivalence step for adults, using the
concepts developed in assessing functional equivalence for children, or
by improving the RFC process to ensure its relevance for younger adults.
In either case, SSA should develop an approach, similar to the childhood
FE, which looks at the impact of impairment across the domains of
function critical for an adult to function in competitive employment.

2.  **Use of regulations**

We urge that SSA construct the children's mental disorder listings so
that people do not have to refer back and forth between different
listings to find the functional criteria. While this would require
repetition of criteria in each of the separate listings, the added
clarity for users would be well worth it.

3.  **Consultative Exams**

We urge SSA to make use of Consultative Examiners (CE) on a broader
scale than in current practice. Additional information would assist
adjudicators in making better decisions in many cases. We urge the
following:

-   SSA should reinforce the Disability Determination Services' (DDS)
    responsibility to use consultative exams to acquire additional or
    "missing" evidence.

-   SSA should particularly emphasize the use of vocational CEs for
    people who have no real employment history. This is of particular
    importance for younger adults who are finishing their special
    education, but who have not been tested in the job market.

SSA should encourage the use of clinical social workers as CEs to
collect evidence on medical and social history from individuals and
families. SSA should treat evidence from appropriately state-certified
clinical social workers as "medical evidence," especially where this
information helps establish the medical and social history for the
individual.

### Issues Outside the Listings

# Improve full development of the record earlier in the process

Developing the record so that relevant evidence from all sources can be
considered is fundamental to full and fair adjudication of claims. The
decisionmaker needs to review a wide variety of evidence in a typical
case, including: medical records of treatment; opinions from medical
sources and other treating sources, such as social workers and
therapists; records of prescribed medications; statements from former
employers; and vocational assessments. The decisionmaker needs these
types of information to determine the claimant's residual functional
capacity, ability to return to former work, and ability to engage in
other work which exists in the national economy in significant numbers.
Once an impairment is medically established, SSA's regulations envision
that all types of relevant information, both medical and nonmedical,
will be considered to determine the extent of the limitations imposed by
the impairment(s).

The key to a successful disability determination process is having an
adequate documentation base and properly evaluating the documentation
that is obtained. Unless claims are better developed at earlier levels,
the procedural changes will not improve the disability determination
process. Unfortunately, very often the files that denied claimants bring
to their representatives show that inadequate development was done at
the initial and reconsideration levels. Until this lack of evidentiary
development is addressed, the correct decision on the claim cannot be
made. Claimants are denied **not** because the evidence establishes that
the person **is not disabled**, but because the limited evidence
gathered cannot establish that the person **is disabled**.

A properly developed file is usually before the ALJ because the
claimant's representative has obtained evidence or because the ALJ has
developed it. Not surprisingly, different evidentiary records at
different levels can easily produce different results on the issue of
disability. To address this, the agency needs to emphasize the full
development of the record at the beginning of the claim.

**We support full development of the record at the beginning of the
claim so that the correct decision can be made at the earliest point
possible.** Claimants should be encouraged to submit evidence as early
as possible. However, the fact that early submission of evidence does
not occur more frequently is usually due to reasons beyond the
claimant's control.

Our recommendations to improve the development process include the
following:

-   SSA should explain to the claimant, at the beginning of the process,
    what evidence is important and necessary.

-   DDSs need to obtain necessary and relevant evidence. Representatives
    often are able to obtain better medical information because they use
    letters and forms that ask questions relevant to the disability
    determination process. DDS forms usually ask for general medical
    information (diagnoses, findings, etc.) without tailoring questions
    to the Social Security disability standard. The same effort should
    be made with nonphysician sources (e.g., therapists, social workers)
    who see the claimant more frequently than the treating doctor and
    have a more thorough knowledge of the limitations caused by the
    claimant's impairments.

-   Improve treatment source response rates to requests for records,
    including more appropriate reimbursement rates for medical records
    and reports.

-   Provide better explanations to medical providers, in particular
    treating sources, about the disability standard and ask for evidence
    relevant to the standard.

2.  **Administrative Process**

The SSDI and SSI application processes can be both lengthy and complex.
Often, persons with TBI have difficulty even applying for benefits at a
crowded SSA field office, unless they are provided with assistance. And,
if an individual with a TBI does file an application, he or she
frequently has difficulty in completing the voluminous paperwork --
particularly in providing an accurate medical history and a full record
of hospitalizations or other medical treatment. The claimant with a TBI
is coping with fatigue, short and long-term memory difficulties,
information "overload" and visual and vestibular disturbances. Finally,
a person with a TBI is likely to struggle in attending appointments --
either for CEs or for hearings. Failure to appear at these appointments
can result in a claim being dismissed inappropriately.

Even when a person with a TBI is able to pursue his or her application,
claimants are commonly denied at both the initial application and
reconsideration levels. These claimants must then file for a hearing
before an Administrative Law Judge (ALJ). While a significant percentage
of claimants are granted benefits by ALJs, many claimants with TBI are
unable to file appeals, and thus they never have this additional
opportunity to demonstrate their disability. Ironically, the current
process results in people whose disabilities make them the least able to
file an appeal form being denied benefits, while others who are less
impaired, but are still disabled, will be awarded SSDI and/or SSI.

When a person with a TBI does receive SSDI or SSI, they are often
required to have a representative payee. Many people with TBI,
particularly those who are homeless or who have lost most social
connections, do not have anyone that they can turn to as a reliable
payee. The divorce rate is high in cases of TBI so spousal or
significant other support often is not available. Unfortunately, an
insufficient number of local service providers are willing to serve as
payees. As a result, many low-income persons with TBI are taken
advantage of by friends or family members who serve as their payees only
because nobody else is available.

Because these problems severely impact SSDI and SSI applicants with TBI,
we offer the following recommendations to help improve the process. It
is our belief that implementation of these recommendations would be of
great benefit to claimants, while also moving claims through the
application process more efficiently.

# [Pre-Application]{.underline}

-   SSA should institutionalize SSDI/SSI outreach to low income persons
    with mental disabilities. The focus of this outreach should be on
    specific populations that have a high incidence of mental
    impairments, such as homeless persons or children in particular
    areas.

**[Application Process:]{.underline}**

-   SSA should expand its use of pre-release agreements, to take more
    applications before claimants leave public institutions such as
    hospitals, jails, or prison.

-   SSA should provide claimants with TBI with additional
    accommodations, including assistance in completing applications and
    other forms, and flexibility in scheduling appointments for CE's or
    ALJ hearings.

-   SSA should explicitly recognize that assertion of a TBI may be
    sufficient to demonstrate good cause for failure to file a timely
    appeal or other SSA document. This currently is SSA's policy, as
    codified in SSR 91-5p; yet, adjudicators often do not follow the
    policy. According to SSR 91-5p:

> When a claimant presents evidence that mental incapacity prevented him
> or her from timely requesting review of an adverse determination ...
> at the time of the prior administrative action, SSA will determine
> whether or not good cause exists for extending the time to request
> review. If the claimant satisfies the substantive criteria, the time
> limits in the reopening regulations do not apply; so that,
> ***regardless of how much time has passed since the prior
> administrative action***, the claimant can establish good cause for
> extending the deadline to request review of that action. (emphasis
> added)

**[Adjudication Process:]{.underline}**

-   SSA should focus on rapid development of case files, as soon as
    claims are taken. This should involve building connections with
    state Mental Health / Mental Retardation agencies, to ensure that
    providers funded by those agencies are trained on how to quickly
    submit claimant treatment records to SSA.

-   SSA should also focus on expanding the use of presumptive
    eligibility for persons with mental impairments. Specifically,
    presumptive eligibility criteria should be revised to indicate that
    persons with a well-documented history of serious and persistent
    mental illness can be found presumptively eligible for SSI. And, SSA
    should seek to expand demonstration programs such as the SSI
    Advocacy Project in Baltimore, MD. -- a former SSA demonstration
    program that is now independently funded. The SSI Project works with
    people who are homeless and mentally ill and has received special
    permission from SSA to submit cases for presumptive eligibility
    based solely or primarily on mental impairments.

# [Post-Eligibility]{.underline}

-   SSA should make additional efforts to recruit qualified
    representative payees. In addition, SSA should devote more time to
    assisting beneficiaries with mental impairments with obtaining
    reliable representative payees.

**3. Drug addiction and alcoholism**

We urge SSA to provide guidance in the mental impairment listings
Introduction, Section 12.00, on the disability analysis of combinations
of substance use disorders and mental impairments. Although the current
standard was established by Pub. L. No. 104-121 in 1996, the regulations
at 20 C.F.R. §§ 404.1535(b) and 416.935(b) have not been revised and
still apply the prior standard. The only complete source of SSA's policy
on the analysis of combinations of substance use disorders and mental
impairments is contained in subregulatory instructions in EM 96-
(8/30/96). The out-of-date regulations and the inaccessibility of the
subregulatory materials result in confusion and incorrect
determinations. Given the common co-morbidity of substance use disorders
and mental impairments, it is critical that SSA include the language we
have proposed in Appendix A to help assure fair and correct disability
determinations.

**4. Specialized adjudicators for childhood mental (and physical)
disorders**

SSA and DDSs generally labor under the historic legacy of making every
adjudicator a generalist who must be as expert in analyzing a 60
year-old man's claim as an infant's claim. The entire medical and health
provider world has long stepped away from this approach recognizing the
substantial differences and need for specialist expertise in evaluating
medical and functional problems of adults and children. It took the SSA
central office, almost 20 years after the inception of the SSI program,
to establish its Children's Disability bureau within the Office of
Disability. Many DDSs have de facto adopted various aspects of
specialist attention for children. SSA should encourage DDSs to adopt
specialization within its staff for children's cases.

**5. Psychotherapy treatment records**

SSA currently uses its general client signed release form, SSA 827
(signed in the field office) to obtain medical and clinical records, but
under the HIPAA regulations, which require specific informed release for
psychotherapy notes and records, mental health providers do not send
these records. What is worse, SSA has acquiesced in this situation, and
a negative inference against the claimant is often made, discounting
this source because of the lack of this underlying documentation.

SSA needs to immediately address this by amending SSA 827 to
specifically and explicitly cite psychotherapy records as covered by the
release, and to take other steps as necessary, in the period before the
form is revised, to achieve this same end.

In the alternative, if SSA has administratively decided to explicitly
exclude psychotherapy notes from its general release form, adjudicators
should be instructed to make no negative inference from the omission of
these documents from the record. Some mental health facilities may
uphold a more restrictive rule than HIPAA imposes regarding the release
of patient records and claimants should not be adversely affected by
these more stringent rules protecting patient privacy.

**6. Referral of children to Medicaid and State CHIP Programs**

Access to health insurance is essential for all children applying for
SSI, both to treat and ameliorate existing health problems causing the
disability, and to lessen their time on SSI. The Mississippi pilot of
referrals from SSA field offices to the state MA and State Children's
Health Insurance Program (CHIP) agency shows the great efficiency and
success of this proposal. The total national cost to SSA of this
proposal has been determined by SSA to be only \$1 million. Even this
cost would be halved in those section 1634 states (more than half in the
nation) utilizing the SSA SDX computer tape, shared with the state,
which includes SSI child disability applicant children, and their health
insurance status.

This reform should be rolled out nationally to ensure that the most
vulnerable low-income children in the nation, those with disabilities
and chronic health problems, receive the health insurance they are
already eligible for.

7\. Culturally competent assessment tools and process

When considering whether or not an individual meets the definition of
"disability", we recommend that careful consideration be given to the
individual's culture and primary language. In addition, when gathering
evidence to make a disability determination, we urge SSA to make sure
those assessments, tests and evaluations performed on applicants are
done in a manner that is culturally and linguistically relevant.