Intellectual Disability

Intellectual disability is a below-average cognitive ability with three (3)

characteristics:

Intelligent quotient (or I.Q.) is between 70-75 or below

Significant limitations in adaptive behaviors (the ability to adapt and carry on everyday life activities such as
self-care, socializing, communicating, etc.)

The onset of the disability occurs before age 18.

Intelligence refers to general mental capability and involves the ability to reason, plan, solve problems, think
abstractly, comprehend complex ideas, learn quickly, and learn from experience.

Studies show that somewhere between one (1) percent and three (3) percent of Americans have intellectual
disabilities. There are many causes of intellectual disabilities, factors include physical, genetic and/or social.

The most common syndromes associated with intellectual disabilities are autism, Down syndrome, Fragile X
syndrome and Fetal Alcohol Spectrum Disorder (FASD).

Common causes occur from genetic conditions (Down syndrome and Fragile X syndrome are examples),
problems during pregnancy (a pregnancy of the mother who drinks alcohol while pregnant can result in FASD),
problems at the time of birth, health problems such as whooping cough, measles or meningitis and exposure to
environmental toxins like lead or mercury.

The impact of having an intellectual disability varies considerably, just as the range of abilities varies
considerably among all people. Children may take longer to learn to speak, walk and take care of their
personal needs, such as dressing or eating. It may take longer to learn in school.

As adults, some people are able to lead independent lives in the community without paid supports. A small
percentage will have serious, lifelong limitations in functioning. However, with early intervention, an appropriate
education and supports as an adult, all can lead satisfying lives in the community.

Sometimes intellectual disability is also referred to as developmental disability which is a broader term that
includes ASD (autism spectrum disorders), epilepsy, cerebral palsy, developmental delay, fetal alcohol
syndrome (or FASD) and other disorders that occur during the developmental period (birth to age 18).

The major differences are in the age of onset, the severity of limitations, and the fact that a person with a
developmental disability definition may or may not have a low I.Q. While some people with intellectual disability
will also meet the definition of developmental disability, it is estimated that at least half do not meet the
requirements for the developmental disability definition.

Diagnosis of an Intellectual Disability

The purpose of establishing a diagnosis of intellectual disability is to determine eligibility in order to receive
various services and supports, and to ensure rights are protected, including:

Special education services

Home and community-based waiver services

Social Security Administration benefits

Specific treatment within the criminal justice system (e.g., In 2002, the U.S. Supreme Court ruled in Atkins v.
Virginia that executing the mentally retarded violates the Eighth Amendments ban on cruel and unusual
punishment).
Intellectual disability is diagnosed through the use of standardized tests of intelligence (testing a persons I.Q.)
and adaptive behavior (the ability of a person to function and perform everyday life activities). The American
Association on Intellectual and Developmental Disabilities (AAIDD) states the following must be present:

1.

Limitations in present functioning must be considered within the context of community environments typical of
the individuals age, peers and culture.

2.

Valid assessment considers cultural and linguistic diversity as well as difference in communication, sensory,
motor and behavioral factors.

3.

Within an individual, limitations often coexist with strengths.

4.

An important purpose of describing limitations is to develop a profile of needed supports.

5.

With appropriate personalized supports over a sustained period, the life functioning of the person with
intellectual disability generally will improve (AAMR, 2002).

Treatment of an Intellectual Disability

There is no cure for intellectual disability, but services and supports play an important role and can enable the
person to thrive throughout their lifetime. Services for people with intellectual disabilities and their families are
primarily there to provide adequate support to allow for full inclusion in their communities. These services touch
their daily lives (education, justice, housing, recreational, employment, health care, etc.) and may include:

Case management (a case manager helps the person apply for Medicaid in order to get a variety of supports
including daily living needs, health care and long term care services and supports)

Family support (for example, respite care)

Vocational programs

Day programs

Residential options

Early intervention

Special education

Transition services
Supports include the resources and individual strategies necessary to promote the development, education,
interests, and well-being of a person. Supports can come from family, friends and community or from a service
system. Job coaching is an example of a support provided by a service system. Supports can also be
provided by a parent, sibling, friend, teacher or any other person, such as a co-worker who provides a little
extra support to someone on the job. Supports are provided in many settings, and a setting or location by
itself is not a support.

Down Syndrome
Down syndrome is a genetic condition that causes delays in physical and intellectual development. It occurs in
approximately one in every 800 live births. Individuals with Down syndrome have 47 chromosomes instead of
the usual 46. It is the most frequently occurring chromosomal disorder. Down syndrome is not related to race,
nationality, religion or socioeconomic status.

Children with Down syndrome are usually smaller, and their physical and mental developments are slower
compared to children who are unaffected. The majority of children with Down syndrome have mild to moderate
intellectual disabilities. However while some show no sign of having an intellectual disability others may have
severe intellectual disabilities.

Although individuals with Down syndrome have distinct physical characteristics, generally they are more similar
to the average person in the community than they are different. Not every child with Down syndrome has all the
characteristics; some may only have a few, and others may show most of the signs of Down syndrome. Some
of the physical features in children include flattening of the back of the head, slanting of the eyelids, small skin
folds at the inner corner of the eyes, depressed nasal bridge, slightly smaller ears, small mouth, decreased
muscle tone, loose ligaments, and small hands and feet. About fifty percent of all children have one line across
the palm, and there is often a gap between the first and second toes.

Its critical for parents and other caregivers to remember that a caring and enriching home environment, early
intervention, and integrated education efforts have a strong and positive influence on the child's development.

Diagnosis
Down syndrome is usually identified at birth or shortly thereafter. Initially the diagnosis is based on physical
characteristics that are commonly seen in babies with Down syndrome. These include low muscle tone, a
single crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes.
The diagnosis must be confirmed by a chromosome study (karyotype). A karyotype provides a visual display of
the chromosomes grouped by their size, number and shape. Chromosomes may be studied by examining
blood or tissue cells. Two types of procedures are available to pregnant women: screening tests and
diagnostic tests. The screening tests estimate the risk of the baby having Down syndrome. Diagnostic tests tell
whether or not the baby actually has Down syndrome.

Screening Tests

At this time the most commonly used screening test is The Triple Screen. This is a combination of three tests
that measure quantities of various substances in the blood. These tests are usually done between 15 and 20
weeks of gestation.

Sonograms (ultrasounds) are usually performed in conjunction with other screenings. These can show some
physical traits that are helpful in calculating the risk of Down syndrome.

Screening tests do not accurately confirm the diagnosis of Down syndrome. In fact, false positives and false
negatives frequently occur.

Diagnostic Tests
Three diagnostic tests are currently available:

Amniocentesis is performed between 12 and 20 weeks gestation.

Chorionic Villus Sampling (CVS) is conducted between 8 and 12 weeks.

Percutaneous Umbilical Blood Sampling (PUBS) is performed after 20 weeks.

Treatment
Quality educational programs, a stimulating home environment, good health care, and positive support from
family, friends and the community enable people with Down syndrome to develop to their full potential and lead
fulfilling lives.

It is important to remember that while children and adults with Down syndrome experience developmental
delays, they also have many talents and gifts and should be given the opportunity and encouragement to
develop them.

Most children with Down syndrome have mild to moderate impairments but it is important to note that they are
more like other children than they are different. Early Intervention services should be provided shortly after
birth. These services include physical, speech and developmental therapies.

Most children attend their neighborhood schools, some in regular classes and others in special education
classes. Some children have more significant needs and require a more specialized program. Some high
school graduates with Down syndrome participate in post-secondary education. Many adults with Down
syndrome are capable of working in the community, but some require a more structured environment.

Many children with Down syndrome have health complications beyond the usual childhood illnesses.
Approximately 40% of the children have congenital heart defects. It is very important that an echocardiogram
be performed on all newborns with Down syndrome in order to identify any serious cardiac problems that might
be present. Some of the heart conditions require surgery while others only require careful monitoring.

Children with Down syndrome have a higher incidence of infection, respiratory, vision and hearing problems as
well as thyroid and other medical conditions. However, with appropriate medical care most children and adults
with Down syndrome can lead healthy lives.

Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in
1983 to 60 today. Researchers are making great strides in identifying the genes on Chromosome 21 that
cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or
prevent many of the problems associated with Down syndrome in the future.

FASD
FASD (Fetal Alcohol Spectrum Disorder) is an umbrella term describing the range of effects that can occur in
an individual whose mother drank alcohol during pregnancy. These effects can include physical, behavioral,
mental and/or learning disabilities with possible lifelong implications. It is identified by abnormal facial features,
central nervous system problems and slowness of growth, and occurs when pregnant women drink alcohol and
pass the alcohol along to their unborn babies through the blood stream. FASD can cause physical and mental
disabilities of varying levels of severity (including intellectual disability).

The prevalence of FASD is not known. However, CDC (Centers for Disease Control & Prevention) studies have
shown that 0.2 to 1.5 cases of FAS occur for every 1,000 live births in certain areas of the United States, while
studies using different methods have estimated the rate of FAS at 0.5 to 2.0 cases per 1,000 live births. Other
prenatal alcohol-related conditions are believed to occur approximately 3 times as often as FASD. FASD
occurs in all types of homes and families in the U.S. The incidence of FASD is higher among certain tribes of

Native Americans and Alaska natives. Also, it is not uncommon for adoptive parents to discover their adopted
child has FASD.

Children with FASD can have serious lifelong disabilities other than intellectual disabilities, such as learning
disabilities and serious behavioral problems. The good news is FAS is not hereditary and only occurs if a
woman drinks alcohol during her pregnancy. In other words, FASD is 100% preventable (Centers for Disease
Control and Prevention).

FASD Diagnosis
Deciding if a child has FASD takes several steps. There is no one test to diagnose FASD, and many other
disorders can have similar symptoms. In general, FASD is diagnosed by 4 criteria:

1.

Growth deficiency in height and/or weight either prenatally or postnatally.

2.

Specific pattern of facial anomalies: short eye slits, smooth or indistinct philtrum (the ridges running vertically
between the nose and lips) and a thin upper lip.

3.

Some brain damage to the central nervous system demonstrated through microcephaly (small size of the
brain), tremors, hyperactivity, fine or gross motor problems, attention deficits, learning disabilities, intellectual
impairments and possible intellectual disability.

4.

Evidence of alcohol use by the birth mother during pregnancy (however, some diagnoses are made without this
criteria).

FASD Treatment
There is no cure for this condition and it does not appear to get better with age. The damage of FASD caused
by a mothers drinking during pregnancy is permanent.

However, with early identification and diagnosis, children can receive services that can help maximize their
potential. They will benefit from early intervention services and an individualized education program in school
that includes preparation for transition from school to work and possible further education.

Many people with FASD benefit from one-on-one counseling support. In addition, they often require intensive
service coordination if they do not have someone who can coordinate the many services they need (such as
on-going individual therapy, job coaching, housing, and transportation).

Secondary conditions (conditions that occur due to having FASD) often occur later in life, such as inability to
live independently or hold down a job, mental health problems, drug/alcohol addictions, failure to develop
appropriate sexual behavior and consequent legal problems.

Once FASD is diagnosed in a child, secondary conditions can be reduced and in some cases prevented
altogether. Children are better protected from developing secondary conditions if they are:

1.

Diagnosed before age 6;

2.

Live in a stable and nurturing home;

3.

Never experience violence against themselves;

4.

Stay in each living situation at least 2.8 years;

5.

Experience a good quality home from 8 to 12 years of age;

6.

Apply for and are eligible for developmental disabilities services;

7.

Have a diagnosis of FAS rather than FASD; and

8.

Have their basic needs met.