I NTELLECTUAL DISABILITY

Introduction
Intellectual disability is not a single, isolated disorder. The American
Association of Intellectual and Developmental Disability (AAIDD)
provides a tri-dimensional definition of intellectual disability which is
currently the most widely accepted.

Intellectual disability, which originates before the age of 18, is a

disability characterized by significant limitations both in intellectual
functioning (reasoning, learning, problem solving) and in adaptive
behavior (AAIDD, 2007).

As defined by the American Academy of Child & Adolescent Psychiatry

(AACAP), adaptive behavior covers a range of everyday social and
practical skills incommunication, self-care, home living, social skills,
community use, self-direction, health and safety, functional academics,
leisure, and work.

This categorization sub-classifies intellectual disability according to the

intensity and nature of needed supports. In addition, it emphasizes the
need for detailed assessment in all relevant domains, including
psychological and emotional functioning (AACAP, 1999).

In recent years, there has been a widespread effort to replace the term
“mental retardation” with “intellectual disability” (AAIDD, 2007).

Both the Centers for Disease Control and Prevention (CDC) and the
American Association on Mental Retardation (AAIDD) have adopted the
new terminology.

The President’s Committee on Mental Retardation has also adopted the

change and renamed itself the President’s Committee for People with
Intellectual Disabilities (PCPID, 2007).

“Mental retardation” is still used, however, in the Diagnostic and

Statistical Manual of Mental Disorders, Fourth Edition, Text Revision
(DSM-IV-TR)
(American Psychiatric Association, 2000).

Virginia has recently adopted the current terminology. In 2008, the

Virginia General Assembly passed legislation to rename the state’s
Department of Mental Health, Mental Retardation and Substance Abuse
Services as the Department of Behavioral Health and Developmental
Services (DBHDS). The Board and the Office of the Inspector General
would also be renamed to reflect the change.

The final version of the 2008 bill required that, before taking effect, it
also be passed by the 2009 General Assembly.

The bill passed unanimously, thus supporting the Department’s mission

under a new name and moving away from the stigma associated with the
term “mental retardation.”

Prevalence
Intellectual disability affects about one in ten families in the United
States (AAIDD, 2007). Estimates of the disorder’s prevalence vary,
depending on diagnostic criteria, study design, and methods of
ascertainment.

For example, when diagnosis is based on IQ alone, prevalence is

estimated at approximately 3% but, when the AAIDD’s tri-dimensional
definition is used (AAIDD), the national prevalence rate is estimated at
1% (AACAP, 1999). Intellectual disability is more common in males than
in females, with a male-to-female ratio of approximately 1.5 to 1 (APA,
2000).

The following information is specific to Virginia and was obtained from

the DBHDS. In 2008, the Department estimated that approximately
71,526 individuals (ages six and older) had an intellectual disability.

Approximately 18,495 infants, toddlers, and young children (birth

through age 5) had developmental delays requiring early intervention
services.

In 2008, data from Virginia’s community services boards indicated that

11,135 children between the ages of 0 to 17 had a diagnosis of
intellectual disability and were being served (DBHDS, 2009).

Assessment and Diagnosis

A multidisciplinary team, which may include psychologists, psychiatrists,
pediatricians and clinical geneticists, typically conducts the assessment
for intellectual disability.

All assessments should becomprehensive and include standardized

testing of intellectual ability, adaptive behavior and a detailed family and
medical history evaluation (AACAP, 1999).

The DSM-IV-TR provides the standard criteria for a diagnosis of

intellectual disability; these are used in the diagnosis of children, as well
as adults (APA, 2000). The disorder is characterized by “significantly
subaverage intellectual functioning,” which must be supported by three
factors:

1. Significant intellectual impairment;

2. Significant limitations in adaptive functioning in at least two of the
following areas: communication, selfcare, home living,
social/interpersonal skills, use of community resources, self-direction,
functional academic skills, work, leisure, health, and safety; and
3. Onset before the age of 18 (APA).

Intellectual Impairment
Intellectual impairment is typically measured by individually
administered cognitive assessment instruments (AACAP, 1999; AAIDD,
2007).

According to the AACAP and the DSM-IV-TR, when choosing a cognitive

assessment instrument, the youth’s socio-cultural background and native
language must be considered, since ignoring these variables may lead to
a false positive diagnosis of intellectual disability in youth of linguistic
and cultural minorities.

For a diagnosis of intellectual disability, the youth must have an IQ that

falls below the 70 to 75 range (APA, 2000).

The threshold for intellectual disability is typically set at 70.

Experts generally agree that scores of 71 to 75 are consistent with

intellectual disability only when significant deficits in adaptive behavior
are present and manifested during the developmental period (AACAP).

Table 1
outlines the degrees of severity of intellectual disability as set forth by
the DSM-IV-TR (APA).

Adaptive Functioning
Adaptive behavior refers to an individual’s effectiveness in functioning at
an age and culturally appropriate level. With regard to impairments in
adaptive functioning, AAIDD (2007) and the DSM-IV-TR (APA, 2000)
criteria specify that the child or adolescent must demonstrate significant
impairments in at least two of ten areas of functioning for a diagnosis of
intellectual disability.

These include limitations in communication, self-care, home living,

social/interpersonal skills, use of community resources, self-direction,
functional academic skills, work, leisure, health, and safety (APA).
There are multiple measures which address these ten areas of adaptive
behavior.
Table 1

Degrees of Severity of Intellectual Disability

Severity Approximate IQ Range
Mild 55 to approximately 70
Moderate 35-40 to approximately 50-55
Severe 20-25 to approximately 35-40
Profound Below 20-25
Source: APA, 2000.

Age of Onset
The DSM-IV-TR also stipulates that the onset of symptoms occurs prior to
the age of 18 (APA, 2000).

This does not prohibit diagnosis after age 18, but there must be
documented evidence that the onset of symptoms occurred prior to that
age.

Children under age two, however, should not be given a diagnosis of

intellectual disability unless the deficits are relatively severe and/or the
child has a condition highly correlated with intellectual disability, such as
Down syndrome (APA).

Instead, service providers should acknowledge the cognitive or

behavioral deficit as a form of developmental disability and leave room
for further diagnosis as the child gets older (Biasini, Grupe, Huffman &
Bray, 1992).

Causes and Risk Factors

Knowledge of the causes of intellectual disability in a particular case is
important for a number of reasons.

For example, the condition may be treatable and/or preventable, and it

may be associated with a particular “behavioral phenotype” or increased
risk for a medical disorder (AACAP, 1999).

However, in 58 to 78% of youth with mild intellectual disability, and in

23 to 43% of youth with severe intellectual disability, no causation has
been ascertained with current diagnostic techniques (AACAP, 1999).
 In other cases, numerous causes of intellectual disability have been
identified. Table 2 outlines causes, examples and estimated frequency.

Table 2
Examples of Intellectual Disability Types
Causes
Examples
Estimated
Frequency
Prenatal causes, e.g., genetic disorders, monogenic mutations
Down Syndrome,
Fragile XSyndrome 32%
Malformations of unknown causation, e.g., malformation of the central
nervous system
Neural tube defects,
Cornelia de Lange Syndrome 8%
External prenatal causes, e.g., maternal infections, toxins
HIV, Fetal Alcohol Syndrome 12% Perinatal causes, e.g., infections,
delivery
problems
Encephalitis, Neonatal asphyxia 11%
Postnatal causes, e.g., infections, toxins,
psychosocial
Lead poisoning, deprivation, tumor 8%
Unknown causes 25%
In general, the milder the severity of intellectual disability, the more
difficult it is to identify the etiology
(Jellinek, Patel & Froehle, 2002).

Among the identified causes of intellectual disability,those most

frequently cited are prenatal causes, malformations of unknown
causation, external prenatal
causes, perinatal causes and postnatal causes (AACAP, 1999).

Comorbidity
According to the AACAP (1999), intellectual disability frequently co-
occurs with other mental health
disorders, with most prevalence estimates ranging from 30 to 70%.
Clinicians and researchers have
explained this high prevalence of comorbidity as the result of the
psychological vulnerability of children with
intellectual disability. This can have a significant impact on a child’s
coping skills and mental health, and it
may be one of the primary factors limiting the functioning, quality of life,
and adaptation of intellectual
disability to community life (Masi, 1998).
An accurate psychiatric diagnostic evaluation and diagnosis provide the
foundation for treatment
planning (AACAP, 1999). Such a psychiatric diagnostic evaluation would
be sufficiently comprehensive to
identify the child’s disabilities and educational needs. Clinicians
diagnosing comorbid psychiatric illnesses in
youth with a “severe” intellectual disability may have to rely on
information obtained from family and other
caregivers, including direct behavioral observations of the youth in
various settings. In general, the
assessment of comorbid illnesses in youth with intellectual disability
should include the following, as adapted
from AACAP:
1. Comprehensive history obtained from child, parents, teachers and
other caregivers across
different settings (e.g., home, school, hospital). Such a comprehensive
history must include
information about presenting symptoms with concrete behavioral
examples, review of any
psychiatric symptoms (e.g., premorbid and current behavioral and
personality patterns), adaptive
functioning, self-care, communication, social functioning, past psychiatric
diagnoses and
treatment history, past and current educational and rehabilitative
programs history, review of past
and current cognitive assessment results, and multiple perspectives on
the child’s presenting
concerns.
2. Interview of the child that is tailored to the youth’s needs and ability
levels.
3. Medical review, including developmental and medical history, past
treatments and coexisting
general medical conditions and their treatment and/or prognosis.
4. Diagnostic formulation that takes in to account the youth’s
developmental level, communication
skills, associated impairments, and familial and socio-cultural factors. In
addition, the possibility
of sexual or other abuse that the patient may not be able to report must
be considered before a
diagnosis based on the DSM-IV criteria is reached.
Table 3 lists the most commonly occurring comorbid conditions and their
estimated comorbidity rates.
Just as for youth not diagnosed with an intellectual disorder, there is no
single “best” treatment for those
youth with a comorbid mental health disorder (King, State & Maerlender,
2005). An underlying assumption in
treating comorbid disorders in youth with intellectual disabilities is that
most youth experience the same
complex interaction of biological, psychological and environmental forces
which shape mental health
disorders (King, State & Maerlender). It is extremely critical that
clinicians serving youth with both an
intellectual disability and comorbid mental health disorder employ a
comprehensive, multidimensional and
multidisciplinary approach.
Table 3
Intellectual Disability Comorbid Disorders
Comorbid Disorders
Estimated Rate of
Occurrence with Intellectual Disability (ID)
References
Autism Spectrum
Disorders
75% Fombonne, 1997
Attention Deficit
Hyperactivity Disorder
4 to 11% Feinstein & Reiss,
1996
Disruptive Behavior
33% Richardson, Koller &
Katz, 1985
Habit Disorders,
Stereotypic Movement
Disorder, and
Self-injurious Behaviors
Self-injurious behaviors are particularly common
in certain IDs, such as Prader-Willi, an
abnormality on the 15th chromosome which
causes low muscle tone, short stature,
incomplete sexual development and a chronic
feeling of hunger that can lead to excessive
eating and life-threatening obesity (Prader-Willi
Association, 2010).
Masi, 1998; AACAP,
1999
Mental Disorders due to
General Medical
Conditions
Seizure Disorder – 15 to 30%
Motor impairments – 20 to 30%
Sensory Impairments – 10 to 20%
AACAP, 1999
Schizophrenia Similar rates in persons with and without ID Reid, 1993
Mood Disorders, e.g.,
Depression
Underdiagnosed in persons with intellectual
disability; estimated to occur at a rate equal to or
greater than those without ID
AACAP, 1999;
Reiss & Benson,
1985
Anxiety Disorders 25% in outpatient samples Feinstein & Reiss,
1996
Posttraumatic Stress
Disorder
Significantly underdiagnosed in youth with ID AACAP, 1999
Obsessive-compulsive
Disorders
Occurs but difficult to differentiate from selfinjurious,
self-stimulatory, or stereotypic
behaviors
AACAP, 1999
Eating Disorders ID is a predisposing factor for eating disorders
such as Pica, especially in the more “severe”
ranges.
AACAP, 1999
Sources: Commission on Youth Graphic of references provided in table.

Treatments
According to the AACAP (1999), the treatment of youth with intellectual
disability is based on several
guiding principles: person-centered planning, appropriate education,
family training, community integration
and transition planning for adulthood. A child or adolescent with
intellectual disability will improve with
adequate supports (Jellinek, Patel & Froehle, 2002). The concept of
community-based integration calls for
the treatment and integration of children with intellectual disability into
the community to the greatest possible
extent. No more than 10% of persons with intellectual disability in the
United States have ever lived in
institutional settings, and most can be found either living with their
families or in community-based, out-ofhome
placements, such as foster care, group homes and independent living
programs (AACAP). Although
intellectual disability is a life-long disability (DBHDS, 2009), with proper
services and interventions, the
majority of youth with intellectual disability do well in the community and
can participate in employment
opportunities. With appropriate personalized supports over a sustained
period, the life functioning of youth
with intellectual disability generally will improve.
AACAP (1999) cites five different levels or steps as interventions for
youth with intellectual disability:
1. Primary prevention: The goal of primary prevention is to prevent any
conditions that might result
in intellectual disability. Primary prevention methods include, during
pregnancy, using folic acid
supplementation to prevent neural tube defects and abstaining from
alcohol and other
substances. Another primary prevention method is using properly-
installed infant car seats.
2. Secondary prevention: Secondary prevention is the specific treatment
of underlying conditions,
if known, to prevent or minimize brain injuries that might result in
intellectual disability.
Shunting in the case of hydrocephaly (the abnormal buildup of
cerebrospinal fluid in the brain
ventricles) or eating specialized diets for a condition such as
phenylketonuria (a genetic
disorder in which the body cannot metabolize that protein) are examples
of secondary
prevention strategies.
3. Tertiary prevention: Provision of early intervention, education,
habilitation and ancillary
therapies (e.g., physical, occupational, language therapies), family
support and other services
as needed in order to minimize functional impairment and maximize the
child or adolescent’s
abilities would constitute tertiary prevention strategies.
4. Medical care: The goal of this level of treatment is to usually treat
and/or prevent general
medical conditions, such as deafness or seizures in children with Down
syndrome, which
complicate certain intellectual disability syndromes and lower a child or
adolescent’s
functioning.
5. Treatment and prevention of psychosocial dysfunction: The goal of this
approach is to prevent
and reduce maladaptive behaviors and increase the independent
functioning of youth with
intellectual disability who are diagnosed with, or at risk for, mental
health disorders.
Several factors may influence the choice of treatment methods in
children with intellectual disability.
First, the child’s level of cognitive and communication skills may require
the service provider to adapt the
method of treatment. For example, a child who lacks communication
skills would be unable to benefit from
traditional verbally-based treatment such as psychotherapy. Explicit
instruction in expected behaviors,
rehearsal and opportunities for practice in real situations is most
effective. It is also important that clinicians
first determine how a particular symptom or pattern of behavior
compares to what is expected from a child or
adolescent of a given developmental age (King, State & Maerlender,
2005). The general principles of
treatment are the same as those for children with other mental disorders.
However, treatment techniques
should be modified in order to adapt to the child’s developmental level,
particularly regarding communication
skills. Another consideration is the impact of any concurrent general
medical disorders. An effective
treatment plan should be developed to include significant people in the
youth’s life and natural supports in
their daily settings (AACAP, 1999).
The methods and intensity of treatment are adapted as the child
progresses in age. In infants, early
intervention and parent training are used to provide sensory and motor
stimulation and enhance
development (Gale Research, 1998). Furthermore, the site of treatment
may impact the methodology used.
In most cases, outpatient settings are appropriate. Great care and
planning is needed for placing children
with intellectual disability in inpatient treatment facilities as they are
most often not equipped to provide these
children with appropriate therapy, habilitative or recreational programs,
and other necessary services
(AACAP, 1999).
An additional factor that can have a significant impact on treatment
efforts is the willingness of the child
and family members to participate and comply with the therapeutic plan.
Education and on-going support
are essential. Detailed explanations must be given to family members to
ensure that they understand all of
the behavioral and pharmacological interventions that are being used to
treat the child and the treatment
plan objectives.

Developmental and Educational Services

The Individuals with Disabilities in Education Act (IDEA) (Public Law 94-
142, Public Law 99-457, and
Public Law 102-119) requires that children with intellectual disability or
related developmental disorders
receive a free and appropriate education from the time they are born.
The requirement for early intervention
was enacted in 1986 to ensure that all children with disabilities from
birth through the age of two would
receive appropriate early intervention services (Infant & Toddler
Connection of Virginia, n.d.). This
requirement was later incorporated as Part C of IDEA. Early intervention
services are based on an
evaluation sufficiently comprehensive to identify both the child’s
disability and educational needs.
In Virginia, the Department of Behavioral Health and Developmental
Services (DBHDS) is the lead
agency which administers Part C of IDEA. Virginia’s statewide early
intervention system is called the Infant
& Toddler Connection of Virginia. Infant and toddler services can be
home-based, center-based, or some
combination of the two. The nature of the services is determined based
on an assessment of the child and
the family priorities. The services that are provided in response to this
plan may include the identification of
appropriate assistive technology, intervention for sensory impairments,
family counseling, parent training,
health services, language services, health intervention, occupational
therapy, physical therapy, case
management, and transportation to services (Biasini, Grupe, Huffman &
Bray, 1999).
Once the child reaches the age of 3, federal law requires that special
education programs established by
IDEA be made available for the child and family (National Dissemination
Center for Children with Disabilities
[NICHCY], 2009). As the child gets older, the emphasis on special
education programs changes to training
in daily living skills, as well as academic subjects. Treatment efforts will
also include medical care for any
comorbid physical conditions, such as seizure disorders, motor
handicaps, and sensory impairments, as well
as treatment of any psychosocial dysfunction and comorbid mental
disorders.
The services provided through IDEA to both preschool and school-aged
children are most often provided
as home-based, center-based or in naturally-occurring environments. An
Individualized Education Program
(IEP) is developed based on results of the team evaluation and parental
input. This plan describes the
objectives for improving the child's skills and may include family or
parent-focused activities. These services
must also be provided in the least restrictive setting possible, but must
include a continuum of placements
that includes instruction in regular classes, special classes, special
schools, home instruction, and instruction
in hospitals and institutions (Biasini, Grupe, Huffman & Bray, 1999).

Behavioral Techniques
An array of therapeutic techniques has been employed to treat mental
disorders in youth with intellectual
disability. Of these, the most widely utilized and investigated have been
behavioral treatments,
psychopharmacological interventions, environmentally mediated
interventions, and psychotherapy including
individual, group and family-oriented approaches.
Behavioral interventions, including treatments using applied behavior
analysis, have a large evidence
base (Toth & King, 2010). Behavioral approaches analyze the cause of
the behavior (antecedent) and how it
is being reinforced. Techniques such as functional communication
training (e.g., learning how to request
breaks), noncontingent reinforcement (i.e., on a fixed time schedule) and
extinction are used to promote
positive behaviors and reduce challenging behaviors (e.g., aggression,
self-injury, task-avoidance).
Behavioral techniques target skills, deficits and modifications to the
individual’s environment and are most
effective when applied across multiple settings to promote generalization
of skills.
The information discussed in the following paragraph is derived from
King, State & Maerlender (2005).
Behavioral treatments are aimed at providing children and adolescents
with intellectual disability with
alternatives to unwanted behaviors. One treatment with demonstrated
success in managing difficult
behaviors in youth with intellectual disability is positive behavior
support. Positive behavior support involves
the assessment and reengineering of environments. In this way, youth
with problem behaviors are able to
reduce them, while increasing social, personal and professional quality in
their lives. Positive behavior
support is the application of behavior analysis and systems change
perspectives within the context of
person-center values to the intensely social problems created by any
accompanying undesirable or
maladaptive behaviors. Positive behavior support has three primary
features: functional (behavioral)
assessment, comprehensive intervention, and lifestyle enhancement. A
functional literature review found
that positive behavior support appeared to be effective in one-half to two-
thirds of cases studied, although no
long-term quality of life outcomes were reported.

Pharmacological Treatment
Certain issues related to pharmacology have been recognized exclusively
in individuals with intellectual
disability. Reports of the prevalence of psychotropic medication use in
both adults and children with
intellectual disability show that over one-third of the population being
served in residential settings is
receiving one psychotropic drug (Toth & King, 2010). There is also a lack
of specificity about which
psychotropic medications are utilized as well as an “off-label” use for the
treatment of challenging behaviors,
such as aggression and behavioral disturbance (Toth & King). Clinicians
have found that medication is often
prescribed to children with intellectual disability for symptom
suppression without being integrated into the
overall treatment plan (AACAP, 1999). The literature repeatedly advises
that medication should not be used
for the convenience of caregivers or as a substitute for appropriate
services. An additional concern is that
follow-up behavioral data is infrequently collected and providers often
fail to monitor for side effects. This is
especially important in children and adolescents with intellectual
disability, because these patients may be
unable to report symptoms adequately. The same rules for utilizing
pharmacological treatments for youth
with a diagnosed mental health disorder apply to youth with intellectual
disability (Toth & King). The effects
of medication on youth with intellectual disability are similar to those
expected for the general population
(King, State & Maerlender, 2005).
While psychotropic drugs are not often used with children with
intellectual disability, they are most often
prescribed in youth who exhibit disruptive behavior, including self-injury,
stereotyped behaviors, e.g., hand or
finger twisting, or complex whole body movements, and aggression
(AACAP, 1999). Recent research
suggests that atypical antipsychotics may be a better first choice than
typical antipsychotics because of the
lower risk of side effects (Rifkin, 2004). This must be considered in light
of the fact that there are no studies
that address the use of antipsychotics in youth who are aggressive and
psychotic (Rifkin). It is important to
note that no professional body has published drug guidelines for patients
with intellectual disability. Thus,
thorough psychosocial assessment and treatment are important in the
treatment of youth with intellectual
disability, whether or not they receive drug treatment (Rifkin). Moreover,
medications should be prescribed
as they would be for the general psychiatric population, with special
attention being paid to possible
behavioral effects and the youth’s ability to reliably report possibly
dangerous side effects (Silka & Hauser,
1997).
The treatment of attention deficit hyperactivity disorder (ADHD) may be
regarded as an exception.
Several investigators have demonstrated that stimulants are efficacious
in the treatment of accompanying
hyperactivity to a degree that matches youth not diagnosed with an
intellectual disability (King, State &
Maerlender, 2005). However, this has been noted more frequently for
youth with mild to moderate
impairment, rather than for youth with great cognitive disability (King,
State & Maerlender).

Discharge Planning
As indicated by Silka & Hauser (1997), appropriate discharge planning is
crucial for children who may be
placed in acute or short-term inpatient treatment. Ideally, discharge
planning⎯plans for outpatient follow-up
and the provision of any additional services⎯should commence early in
the process. Early and continual
contact with all community supports, including family, school personnel
and outpatient therapists, is
imperative.
Silka & Hauser (1997) outline three questions to be addressed by the
treatment team:
1. What are the treatment objectives?
2. Who is responsible for which service (case manager, family, agency,
client, and others)?
3. What are the minimal discharge criteria?

Unproven Treatments
According to the AACAP (1999) guidelines, the effectiveness of dietary
restrictions in
individuals with intellectual disability is generally not supported by
research. This type of treatment
includes vitamin and mineral supplements and various dietary
restrictions, such as yeast and
gluten-free regimens.

Other Important Treatment Elements

There are other factors which clinicians consider in determining
appropriate treatment; these are
discussed in the paragraphs which follow.
Cultural Considerations
Any assessment of adaptive behavior focuses on how well children can
function and maintain
themselves independently and how well they meet the personal and
social demands outlined for them by
their cultures. Because various cultures may hold unique views regarding
the level of functioning/skills
expected of children of certain ages, clinicians must be culturally
sensitive in diagnosing children with
developmental delays and intellectual disability. In addition, the
sociocultural background and native
language of the child should be considered in assessing intelligence and
level of impairment (AACAP, 1999).
Family Involvement
Service providers must make every effort to include the family in all
aspects of treatment and planning.
They must consider the level of knowledge and understanding of the
family regarding the disability of the
child, and they must also be sure that the family is sufficiently informed
of all service and treatment options.
If professionals fail to acknowledge parents as partners in the process,
they run the risk of alienating them in
the process. This can result in a lack of interest or participation in
necessary services. Thus, the knowledge
and expertise that families already possess about their child and their
child’s disorder should be valued
(Hodapp, DesJardin & Ricci, 2003). Families of children with less
common genetic disorders become the
experts on their child’s disorder, frequently being the only ones with
experience or knowledge of a particular
disorder (Fidler & Hatton, as cited by Hodapp, DesJardin & Ricci).
Peer Interaction
Successful peer interactions can have significant benefits for youth with
intellectual disabilities. Through
social interactions, children and adolescents can learn and practice social
skills, develop peer relationships
and receive needed support. Research has shown that increased social
competence can positively affect
academic achievement and quality of life (Carter & Hughs, 2005;
Goldstein et al., 2002; & Hartup, 1999, as
cited by Toth & King, 2010). A recommended treatment approach for
youth with an intellectual disability
combines such support-based approaches with skills-based strategies.
Availability of Community Services and Supports
The Arc (formerly the Association for Retarded Citizens), a non-profit
organization which supports
persons with intellectual disability, has reported that approximately
285,034 children and adults nationwide
are on waiting lists for such essential supports and services as service
coordination, housing, employment,
in-home supports, early intervention, transportation, and respite care
(The Arc, 2010). A report by the
DBHDS (2009) shows that service availability for children with
intellectual disability is also a serious concern
in Virginia. In the 2010-2014 Comprehensive State Plan, DBHDS
reported that 1,564 children and
adolescents are currently on the waiting list for intellectual disability
services.
In Virginia, individuals with an intellectual disability may be eligible to
receive services from two of
Virginia’s seven Medicaid Waivers. The following information about
Virginia’s Medicaid Waivers is taken
from the Virginia Department of Medical Assistance Services (DMAS)
(2010). Medicaid Waivers are
partnerships between the family support system and Medicaid providers
to provide services that allow
individuals with an intellectual disability to live in their communities
rather than reside and receive services in
an institution. Virginia has developed the Intellectual Disability Waiver
(formerly the Mental Retardation
Waiver) to provide home and community-based services to individuals
under six years of age who are “at
developmental risk,” and to individuals above seven years of age
diagnosed with an intellectual disability
who:
1. qualify for institutional care in an Intermediate Care Facility for
Individuals with Mental Retardation
(ICF/MR);
2. are at imminent risk of ICF/MR placement, and
3. require home and community-based services to live in the community
rather than living in an
ICF/MR.
Virginia also administers the Day Support Waiver, which provides
services to individuals with an
intellectual disability who are on the waitlist for the Intellectual Disability
Waiver. Services are not as
comprehensive as those offered through the Intellectual Disability Waiver
in that they provide day support,
pre-vocational services, and supported employment to recipients on the
waitlist.
Unfortunately, for both the Intellectual Disability and Day Support
Waivers, there are long waiting lists of
individuals who have already applied. As of February 2010, there were
8,162 Intellectual Disability Waiver
slots, with a waitlist of 5,156. Individuals are selected for available
Waiver slots based on their urgent needs
ranking. There are 300 Day Support Waiver slots with a wait list of 5,156
(the same as the Intellectual
Disability Waiver). As with all Medicaid-funded services, there are also
financial eligibility criteria.
Research indicates that lack of services can exacerbate the problems of
individuals with intellectual
disability, as it may allow for an increase in the severity of the disability
or learning delays (The Arc, 2010).
Furthermore, lack of services may also lead to greater dependence,
isolation and a decrease in self-esteem
and productivity. Consequently, providers and policy makers must make
every effort to identify these
children and provide them with necessary services to ensure that they
become productive members of
society.