A new CDC study estimates the prevalence of Intellectual Disability (ID) among children

The CDC (Centers for Disease Control) provides an estimate of the prevalence of Intellectual Disability (ID) in a new study involving 215,000 8-year-old children in nine states.

According to an article in Disability Scoop, “CDC Study Pinpoints Prevalence Of Intellectual Disability” by Michelle Diament, January 21, 2021, the prevalence of intellectual disability among children is consistent with past estimates, but prior studies lacked details on subpopulations.

The study looked at children’s records and identified them as intellectually disabled if they had “an IQ score of 70 or less or if there was a written statement from a qualified professional indicating that the child’s intellectual functioning fell within that range.” 

There are legitimate criticisms of using IQ scores as an indicator of intellectual disability (also called cognitive disability or, formerly, mental retardation), but combined with a consideration of the actual functioning abilities of the child, the label of ID can be useful in confirming eligibility for services and other supports for both the child and the family. When IQ scores are used to disqualify children from the supports or programs they need or to discriminate against them in other ways, then they lose their usefulness and validity. This kind of information, however, is especially useful for state and local agencies responsible for providing educational, vocational, and long term care services for now and in the future.

The study found that 1.2% of the total number of children had IQ scores of 70 or below qualifying them for an intellectual disability diagnosis. The vast majority of children identified — 78% — had mild intellectual disability while 12% were classified in the moderate category and 1% were considered severe or profound. 

My two sons have profound ID and function in the 0-12 month range in abilities. IQ tests for them are profoundly useless. If you want to know what makes them tick and what to do to provide them with meaningful activities and a good quality of life, you have to ask the people who know them well and have worked with them. 

If you assume the figures here apply roughly to the adult population, it is worthwhile noting that people with severe to profound ID represent only 1% of the 1.2% of the general population of people with ID. That is a small minority of a minority. It should not be surprising that they are not easily compared to people with disabilities with far higher functioning abilities and that their needs will be met in far different ways. 

Other findings of the study:

• “Intellectual disability was about twice as likely in boys compared to girls and in Black children compared to white kids. Prevalence also varied dramatically by location with Arkansas at the high end seeing double the cases of Minnesota and Tennessee, which reported the lowest rates. 
• “Of the children with intellectual disability, the study found that 39% also had autism. 
• “Even though most cases of intellectual disability can be reliably diagnosed before age 5, the researchers noted that almost a quarter of the children studied did not undergo an IQ test until after age 6.”
  

Furthermore, “The study authors indicated that given the ‘substantial disparities’ seen across racial, ethnic and socioeconomic groups, the ‘results could be used to help inform strategies to enhance early access to intervention services to improve quality of life for children with ID.’”

The findings from the study were published in the Disability and Health Journal, available online 15 November 2020, as "Prevalence of intellectual disability among eight-year-old children from selected communities in the United States, 2014".

Meet VOR: A Voice of Reason

This description of VOR, an organization that I have belonged to for over 15 years, was part of the packet of materials passed along to every member of the US House of Representatives and the US Senate in June 2018. Regretfully, I missed this year's VOR conference, but VOR's message is clear: even though we represent a small minority (about 5% of the I/DD population), we support a full range of services and residential options to meet the needs of all people with I/DD. 

"The goals of one group should never be placed at odds with the needs of the other. "

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Meet VOR:  A Voice of Reason, speaking out for people with Intellectual and Developmental Disabilities

For 35 years, VOR has advocated for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD). Our membership is mostly comprised of families of individuals with severe or profound intellectual disabilities, often complicated by significant medical, psychological, or behavioral conditions. Many of our loved ones are non-verbal or non-ambulatory. Many engage in self-injuring behaviors. They often require 24/7 care, provided by well-trained and caring direct support professionals. Our family members constitute a minority within a minority. They represent about 5% of the entire population of individuals with I/DD. The home and community-based settings that work for many people with I/DD often fail to meet the needs of these severely disabled, vulnerable individuals.

To acknowledge the extensive range of needs and aspirations of all members of this diverse population, VOR supports Individual and Family Choice, and a Full Continuum of Care. In order to have choice, there must be a full range of quality options available, tailored to meet the intellectual, psychological, behavioral, and physical needs of this diverse population. One size never fits all. 

We support the goals of those who aspire to integrate into the society around them in their choices of residence, education, and employment. We also support the needs of those who would be endangered in an under-protected environment, who can never integrate fully because they cannot even perform the simplest of daily skills, like brushing their teeth, washing, toileting, or verbalizing their needs, their desires, their agitation, or their anger. The goals of one group should never be placed at odds with the needs of the other. We support all residential options, including the individual’s own home, family home, group homes, intentional communities, and larger congregate settings, such as public and private Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF’s/IID, or ICF’s).

By the same principle, we support a full range of employment opportunities for people with I/DD. We support the drive for integrated, competitive employment and laud the proliferation of programs aimed at helping people with intellectual disabilities achieve their full potential. But we oppose the movement to eliminate center-based employment, sheltered workshops, and the movement to eliminate compensatory wages by eliminating Section 14(c) of the Fair Labor Standards Act. People who cannot compete in the open job market need this opportunity. They enjoy this level of work, the peer environment, and the opportunity to be productive. The movement toward competitive employment for some should not mandate the elimination of programs that work for others. 

There is no singular solution that is appropriate to all individuals with I/DD. Yet, this is the underlying premise of policies promoted by many powerful advocacy groups. This is a dangerous assumption, especially for the most vulnerable... 

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For more information on VOR, read more of the 2018 conference materials

Parents of adults with DD : Before I'm Gone

A short preview of parents of developmentally disabled adults discussing their fears for their children's future.

You can watch the full version and find more information at Parent Advocates for Neurodevelopmental Housing in San Francisco.

Defining Intellectual Disability

The term “intellectual disability” replaces the term “mental retardation”. In the campaign to banish the “R-word”, it sometimes seemed advocates wanted to banish “mental retardation” entirely, but the condition did not magically go away.

Surprisingly, the term “intellectual disability” is not defined by the DD Act.

The definition that is often referred to when doing a search for “intellectual disability”, comes from the American Association on Intellectual and Developmental Disabilities (AAIDD):

Definition of Intellectual Disability

Intellectual disability is a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the   age of 18.

Intellectual Functioning

Intellectual functioning—also called intelligence—refers to general mental capacity, such as learning, reasoning, problem solving, and so on.

One way to measure intellectual functioning is an IQ test. Generally, an IQ test score of around 70 or as high as 75 indicates a limitation in intellectual functioning.

Adaptive Behavior
 
Adaptive behavior is the collection of conceptional, social, and practical skills that are learned and performed by people in their everyday lives. 

• Conceptual skills—language and literacy; money, time, and number concepts; and self-direction.
• Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules/obey laws and to avoid being victimized.
• Practical skills—activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone.

Standardized tests can also determine limitations in adaptive behavior.

Age of Onset
 
This condition is one of several developmental disabilities—that is, there is evidence of the disability during the developmental period, which in the US is operationalized as before the age of 18.

Additional Considerations
 
But in defining and assessing intellectual disability, the AAIDD stresses that additional factors must be taken into account, such as the community environment typical of the individual’s peers and culture. Professionals should also consider linguistic diversity and cultural differences in the way people communicate, move, and behave.

Finally, assessments must also assume that limitations in individuals often coexist with strengths, and that a person’s level of life functioning will improve if appropriate personalized supports are provided over a sustained period.


Only onthe basis of such many-sided evaluations can professionals determine whether an individual has intellectual disability and tailor individualized support plans.

This is additional information from the AIDD, “Frequently Asked Questions on Intellectual Disability”:
 
Is intellectual disability the same as mental retardation? Why do some programs and regulations still say mental retardation?
 
The term intellectual disability covers the same population of individuals who were diagnosed previously with mental retardation in number, kind, level, type, duration of disability, and the need of people with this disability for individualized services and supports. 

Furthermore, every individual who is or was eligible for a diagnosis of mental retardation is eligible for a diagnosis of intellectual disability.

While intellectual disability is the preferred term, it takes time for language that is used in legislation, regulation, and even for the names of organizations, to change.

Is intellectual disability the same as developmental disabilities?
 
"Developmental Disabilities" is an umbrella term that includes intellectual disability but also includes other disabilities that are apparent during childhood. 

Developmental disabilities are severe chronic disabilities that can be cognitive or physical or both. The disabilities appear before the age of 22 and are likely to be lifelong.Some developmental disabilities are largely physical issues, such as cerebral palsy or epilepsy. Some individuals may have a condition that includes a physical and intellectual disability, for example Down syndrome or fetal alcohol syndrome.

 Intellectual disability encompasses the “cognitive” part of this definition, that is, a disability that is broadly related to thought processes. Because intellectual and other developmental disabilities often co-occur, intellectual disability professionals often work with people who have both types of disabilities.