What is Intellectual Disability?

The essential features of intellectual disability are significantly sub-average general intellectual functioning accompanied by limitations in adaptive functioning in at least two of the following skill areas: communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction functional academic skills, work, leisure, health and safety. This definition applies when the above characteristics are present in the developmental period.

How Does Intellectual Disability Affect Individuals?

The abilities of people with intellectual disability vary. Eighty-seven percent of people with intellectual disability are mildly affected, with IQ scores generally between 50 and 70. With appropriate supports, all individuals with intellectual disabilities can lead satisfying lives in their community.

What are the Causes of Intellectual Disabilities?

Intellectual Disability can be caused by any condition which impairs development of the brain. Several hundred causes have been discovered, but in about one-third of the people affected, the cause remains unknown. The three major known causes of intellectual disability are Down Syndrome, Fetal Alcohol Syndrome and Fragile X Syndrome.

The causes can be categorized as follows:

Genetic conditions – These result from abnormality of genes inherited from parents or errors when genes combine. Chromosomal disorders happen sporadically and are caused by too many or too few chromosomes, or by a change in structure of a chromosome. Down Syndrome is an example of a chromosomal disorder. Fragile X syndrome is a single gene disorder located on the X chromosome and is the leading inherited cause of intellectual disability. For example, PKU (phenylketonuria), a single gene disorder also referred to as an inborn error of metabolism because it is caused by a defective enzyme. When untreated, PKU can lead to intellectual disabilities.

Problems during pregnancy – Use of alcohol or drugs by the pregnant mother can cause intellectual disability. Recent research has implicated smoking as a factor in increasing the risk of intellectual disability. Other risks include malnutrition, certain environmental contaminants, and illnesses of the mother during pregnancy, such as toxoplasmosis, cytomegalovirus, rubella and syphilis. Pregnant women who are infected with HIV may pass the virus to their child, leading to future neurological damage. Prematurity and low birth weight are often results of prenatal problems and can predict risk for future learning.

Problems after birth – Conditions that cause irreparable damage to the brain can result in intellectual disability. These include accidents such as a blow to the head or near drowning; infections such as pertussis (whooping cough) or measles causing meningitis or encephalitis; and toxins such as lead and mercury.

Other contributors – Poverty and cultural deprivation can contribute to intellectual disability. Children from poor families often receive inadequate medical care putting them at risk for disease conditions that can cause or contribute to intellectual disability. They can have greater exposure to environmental health hazards. Children living in disadvantaged areas may be deprived of many common cultural and day-to-day experiences provided to other youngsters. Research suggests that such under-stimulation can result in irreversible damage and can serve as a cause of intellectual disability.

Whom do I contact if I have questions about the Intellectual Disability Program in Blair County?

Contact Southern Alleghenies Service Management Group (SASMG) at (814) 949-2912.

Whom should I call to get services?

Please contact Missy Glunt at (814) 949-2912, ext. 213 or e-mail crichards@sasmg.org

How do I qualify for services?

To qualify for services, you must be deemed eligible to receive services. The following is what is required:

The essential feature of an intellectual disability is significantly sub-average general intellectual functioning that is accompanied by significant limitations in adaptive functioning in at least two of the following skill areas: communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health, and safety. The onset must occur before the individual’s 22nd birthday.

  1. Significantly sub-average general intellectual functioning shall be determined by a standardized, individually administered intelligence test in which the overall full scale IQ score of the test and the verbal/performance scale IQ scores are at least two standard deviations below the mean, taking into consideration the standard error of measurement for the test. The full scale IQ shall be determined by the verbal and performance IQ scores.
  2. Diagnosis of an intellectual disability is made by using the IQ score, adaptive functioning scores, and clinical judgment when necessary. Clinical judgment is defined as reviewing the person’s test scores, social and medical history, overall functional abilities, and any related factors to make an eligibility determination. Clinical judgment is used when test results alone cannot clearly determine eligibility. The factors considered in making an eligibility determination based on clinical judgment shall be decided and documented by a licensed psychologist, a certified school psychologist, a physician, or a psychiatrist. In cases where individuals display widely disparate skills or achieve an IQ score close to 70, clinical judgment should be exercised to determine eligibility for mental retardation services.

3.If eligibility cannot be determined through a review of the individual’s record and social history, any necessary testing (e.g., adaptive functioning) shall be completed by a licensed psychologist, a certified school psychologist, a physician, or a psychiatrist. This includes determining the eligibility for an individual who is 22 years of age or older, has never been served in the Intellectual Disability service system, and has no prior records of testing. Clinical judgment may be used to determine whether the age of onset of an Intellectual Disability occurred prior to the individual’s 22nd birthday.

What terms should I be familiar with in the Intellectual Disabilities System?

Terms in the Intellectual Disabilities System

Home and Community Information System (HCSIS):HCSIS is a Web-enabled information system that serves as the information system for DPW program offices that support the Home and Community-Based Services Waivers (including ODP).
Office of Developmental Programs:Office of Developmental Programs (ODP) is a state office within Department of Public Welfare (DPW) which sets policy, allocates funds and administers services for persons with intellectual disabilities.
Individual Support Plan (ISP):A plan for each individual developed with the person and the people they choose, which will include specific services and supports, their frequency and duration. The Individual Service Plan will be the foundation for the individual budget.
Person Centered Planning (PCP): A process which helps individuals identify how they want to live their lives and what supports they need to achieve their desired outcomes. Individuals choose people who are important in their lives to be part of the process.