An Interactive Guide to Intellectual Disabilities

Lee Wickham Northeastern Illinois University COUN 427: Diagnostic Systems for Counseling November 25, 2024

Intellectual Disabilities

An interactive guide for counselors and clients

Overview

The American Association on Intellectual and Developmental Disabilities defines an Intellectual Disability (also known as Intellectual Developmental Disorder) as…

“a condition characterized by significant limitations in both intellectual functioning and adaptive behavior that originates before the age of 22”

Intellectual functioning

• Defined as the general mental capacity to consume and generate knowledge, including learning, reasoning, and problem-solving

• Deficits are typically dtermined via clinical assessments and IQ tests (IQ score below ~ 70)

Adaptive behavior

• Defined as the performance of conceptual, social, and practical skills for everyday life

• Deficits limit functioning in school, work, and independent living

Diagnostic Criteria

DSM Diagnostic Criteria

A. Deficits in intellectual functions confirmed by slinical assessment and intelligence testing B. Deficits in adaptive functioning that result in failure to meet normative developmental milestones and socio-cultural expectaions C. Onset during the developmental period

Evaluation Flowchart

Severity Levels and Prevalence

Conceptual

Practical

Social

Conceptual

Practical

Social

Conceptual

Practical

Social

Click on each symbol to learn more

Conceptual

Practical

Social

Profound

Severity

Mild

Moderate

Severe

• Intellectual disabilities affect approximately 1% of the population globally.

• Mild ID is the most common form, accounting for about 85% of cases.

• Males are more likely to be diagnosed than females.

Global Prevalence

Click on each picture to learn more

Client Profiles

Emily, Age 8

Diagnosis: Mild Intellectual Disability

Marcus, Age 18

Diagnosis: Moderate Intellectual Disability

Kurt, Age 50

Diagnosis: Severe Intellectual Disability with Limited Verbal Communication

Sofia, Age 35

Diagnosis: Profound Intellectual Disability with Epilepsy and Limited Mobility

Prognosis and Life Impact

Prognosis

ID is generally a lifelong disorder. In most cases it is nonprogressive. Outcomes vary widely depending on severity of diagnosis and co-occurrence with other conditions. Early and ongoing interventions can improve adaptive functioning . Older children and adults may, with proper support allow for full participation in activities of daily life.

We love data

K-12 Education Outcomes

The Individuals with Disabilities in Education Act (IDEA) entitles students with ID to services when their disability significantly impacts their access to K-12 education. These services promote graduation rates for this population, but often limit the amount of time these students spend among peers without disabilities. Only 21 percent of students with ID spend more than 80 percent of their day in general classroom environments.

We love data

Higher Education Outcomes

Data below from the Ed. Dept’s 2011 National Longitudinal Transition Study (NLTS) indicates significant deficits in higher ed enrollment compared to other disability categories and the general population

of students without a disability were paid employees

of students across all disability categories were paid employees

of students with intellectual disabilities were paid employees

71%

71%

46%

Data from the same survey found that HS graduates with ID are far less likely to be employed 10 years after their graduation compared to other disability categories and the general population. At the time of the survey...

Career Outcomes

Evidence- Based Treatments

Education and employment

Evidence-Based Interventions: Children

Efficacy of treatment modalities vary widely by severity level:

• Applied Behavior Analysis (ABA): techniques to reinforce positive behaviors and reduce problematic behaviors

• Family-based Interventions: Equipping parents and siblings with tools to promote skill acquisition and positive behavior outcomes

• Differentiated learning: Harnessing strengths of each learner by using diverse learning modalities in the same classroom

Evidence-Based Interventions

• Individualized Education Programs (IEPs): Tailored learning plans that focus on a child’s strengths as well as modifactions in the learning environemnt. This can also include a focus on work-based learning.

• Speech and Language Therapy: augmentative and alternative communication (AAC) systems, such as picture exchange communication systems (PECS) or communication devices.

• Supported or Customized Employment: involves placing individuals in an acommodated job with ongoing assistance from job coaches.

ABA Therapy in Action

ABA Techniques such as shaping, chaining, and task analysis are explained and demonstrated in this video.

Differentiated Learning

Explore how instructional content presented in a range of modalities enhances learning for all.

Supported Employment in Action

See how job coaching and adaptations in the work setting can drive the development of self-efficacy and work skills for people with IDs.

Barriers to Support

Services Cliff

• IDEA services abruptly expire after age 21 - sometimes in the middle of a school year

• Looser adherence to IDEA and ADA standards in post secondary education, where populations with ID are lower than K-12

Discoordinated Networks of Support

• IEP goals are sometimes set without necessary conditions for achievement of those goals

• Insufficient communication/sharing of information between K-12 educators and college/employment setting

Counselor Neglect

• Under-resourced and overworked counselors shift focus to more college-ready populations

• Accessible college and career opportunities not always made known to students with ID and their families

Resources

Advocacy Organizations

Advocacy Organizations

Advocacy Organizations

Thank you!

American Psychiatric Association. (2022). Neurodevelopmental disorders. In Diagnostic and statistical manual of mental disorders (5th ed., text rev.). Diment, L., & Hobbs, D. (2014). A gesture-based virtual art program for children with severe motor impairments - development and pilot study. Journal of Assistive, Rehabilitative & Therapeutic Technologies, 2(1), 1–N.PAG. https://doi.org/10.3402/jartt.v2.23206 Education Week. (2018, September 11). Differentiating Instruction: It’s Not as Hard as You Think. YouTube. https://www.youtube.com/watch?v=h7-D3gi2lL8 Friedman, C., Rizzolo, M. C., & Spassiani, N. A. (2020). The Impact of Organizational Supports on the Person‐Centered Health of People With Intellectual and Developmental Disabilities. Journal of Policy & Practice in Intellectual Disabilities, 17(1), 70–78. https://doi.org/10.1111/jppi.12320 Hacking Behavior Analysis. (2021, May 26). Teaching New Behaviors using Shaping & Applied Behavior Analysis. YouTube. https://www.youtube.com/watch?v=sChSIpsmin8 Katz, G., Rangel-Eudave, G., Allen-Leigh, B., & Lazcano-Ponce, E. (2008). A best practice in education and support services for independent living of intellectually disabled youth and adults in Mexico. Salud Pública de México, 50(2), S194–S204. https://doi.org/10.1590/S0036-36342008000800013 Intellectual Disability. (2020). Aaidd.org. https://www.aaidd.org/intellectual-disability ‌

References

Kishore, M. T., Udipi, G. A., & Seshadri, S. P. (2019). Clinical Practice Guidelines for Assessment and Management of intellectual disability. Indian journal of psychiatry, 61(Suppl 2), 194–210. https://doi.org/10.4103/psychiatry.IndianJPsychiatry_507_18 National Center for Education Statistics. (2024). Students With Disabilities. Condition of Education. U.S. Department of Education, Institute of Education Sciences. Retrieved [date], from https://nces.ed.gov/programs/coe/indicator/cgg. Sanford, C., Newman, L., Wagner, M., Cameto, R., Knokey, A.-M., & Shaver, D. (2011). The Post-High School Outcomes of Young Adults with Disabilities up to 6 Years after High School: Key Findings from the National Longitudinal Transition Study-2 (NLTS2). NCSER 2011-3004. In National Center for Special Education Research. Tincani, M., Brodhead, M. T., & Dowdy, A. (2024). ABA Promotes Autonomy and Choice of People with Intellectual and Developmental Disabilities. Journal of Developmental & Physical Disabilities, 1–27. https://doi.org/10.1007/s10882-024-09949-5 VALiD. (2020, October 26). Episode 1 Employing people with intellectual disability. YouTube. https://www.youtube.com/watch?v=vFtUIZeX9Tg

References

Background: Diagnosed with severe intellectual disability and epilepsy in early childhood. Developmental milestones, such as walking and speaking, were delayed. She began experiencing seizures at age 2, which are now partially controlled with medication. Sofia now resides in a specialized care facility with 24/7 nursing support. Strengths: Reacts positively to soothing music and familiar voices. Enjoys sensory experiences, such as soft fabrics, gentle touch, and outdoor breezes. Challenges: Nonverbal, relying on facial expressions, vocalizations, and subtle gestures to indicate needs or emotions. Limited mobility; uses a wheelchair and requires assistance with all positioning and transfers. Areas of Support: Strict seizure monitoring, medication management, and regular neurological follow-ups. Daily stretches to maintain joint flexibility and prevent discomfort. Activities like tactile stimulation, soft music, aromatherapy, and wheelchair-accessible outings.

Social Domain (Mild)

• Can develop social relationships but may have immature social interactions.
• Difficulty perceiving social cues or regulating emotions.
• Vulnerable to being misled or exploited due to gullibility.

Conceptual Domain (Profound)

• Minimal understanding of symbolic processes, with skills largely focused on physical or sensory experiences.
• Often uses objects or gestures rather than concepts or language.

Practical Domain (Severe)

• Dependent on caregivers for most daily living activities, including hygiene, dressing, and meals.
• Supervised living is required, and participation in structured activities is possible.
• Skill acquisition requires long-term training

Background: Emily was diagnosed at age 6 after struggling with speech delays and difficulty learning basic concepts like numbers and colors. She attends a mainstream elementary school with additional special education support. Strengths: Highly social and loves making friends. Enjoys music and has a good memory for songs. Challenges: Struggles with reading comprehension and understanding multi-step instructions. Difficulty recognizing when others may be upset or need personal space. Areas of Support: Speech therapy to enhance communication skills. Behavioral therapy to improve impulse control. Individualized education plans (IEP) focusing on reading and math.

• ID is the 5th most prevalent of the 13 disability categories covered by the Intellectual Disabilities in Education Act (IDEA)

• 6% of all students receiving school-based services have intellectual disabilities (roughly half a million students)

Practical Domain (Profound)

• Dependent on caregivers for most daily living activities, including hygiene, dressing, and meals.
• Supervised living is required, and participation in structured activities is possible.
• Simple skills can be demonstrated with ongoing support

Background: Marcus lives with his parents and is completing a transition program that focuses on life skills and vocational training. He has a part-time job stocking shelves at a grocery store with a job coach's assistance. Strengths: Friendly and dependable, enjoys helping others. Strong visual memory and good at recognizing patterns. Challenges: Limited reading and writing skills; needs assistance with tasks requiring written instructions. Struggles with money management and telling time. Areas of Support: Ongoing vocational training to increase independence at work. Occupational therapy to practice handling daily tasks like cooking and shopping. Social skills coaching to navigate workplace relationships.

Practical Domain (Moderate)

• Can perform basic self-care and household activities with extended teaching.
• Likely to require supervision for work and living arrangements, although semi-independent living is possible in supportive environments.

Social Domain (Severe)

• Limited verbal communication; often relies on gestures, basic words, or augmentative communication devices.
• Relationships are focused on familiar caregivers and family members.

Conceptual Domain (Severe)

• Limited understanding of written language, numbers, or abstract concepts.
• Requires help with problem-solving and daily planning.

Conceptual Domain (Moderate)

• Marked delays in learning and understanding academic skills, typically at an elementary level.
• Support is needed for day-to-day tasks that involve problem-solving or planning.

Background: Kurt lives in a group home and participates in a day program that includes sensory activities, physical therapy, and community outings. He communicates primarily through gestures and a communication device. Strengths: Enjoys physical activities like walking and swimming. Responds well to consistent routines and familiar staff. Challenges: Requires help with all daily living tasks, including dressing and eating. Limited ability to express discomfort or needs, which can lead to frustration. Areas of Support: Ongoing use of assistive communication devices. Sensory activities to reduce overstimulation or frustration. Consistent caregiving team to maintain trust and stability.

Conceptual Domain (Mild)

• Learning academic skills (e.g., reading, writing, math) is slower than peers.
• Abstract thinking, problem-solving, and planning are challenging.
• As adults, struggles with complex tasks like managing finances or job responsibilities.

Practical Domain (Mild)

• Can manage self-care and household tasks but may need support for complex activities like grocery shopping or medical decisions.
• Often achieves some independence with appropriate supports.

Social Domain (Moderate)

• Capable of forming relationships but has limited communication and social skills.
• May rely on simple language and struggle with interpreting nuanced social behaviors.

Social Domain (Profound)

• Limited verbal communication; often relies on gestures, basic words, or augmentative communication devices.
• Relationships are focused on familiar caregivers and family members.