Comprehensive Understanding of Intellectual Disability & Adaptive Functioning

1. Understanding the Department of Developmental Services Probate Court Presentation Peter Tolisano, Psy.D. Director of Psychological Services Connecticut DDS

2. Objectives of the Presentation • Understanding General Intellectual Functioning • Learning about Intellectual Disability • Appreciating Full Scale IQ and the Specific Indexes • Understanding General Adaptive Functioning • Learning about Statute 1-1g • Discussing the Psychological Aspects of Guardianship in Intellectual Disability • Special Topic: A Primer on Autism Spectrum Disorder

3. Identifying Intellectual Functioning along the Bell Curve

4. Understanding General Intellectual Functioning

5. Understanding General Intellectual Functioning Average FSIQ = 100 Standard Deviation = 15

6. Understanding Intellectual Disability Less intelligent than average More intelligent than average 70 40 55 25 Degrees of Severity in the General Population • Mild 85% • Moderate 10% • Severe 3% • Profound 2%

7. Severity Levels in Intellectual Disability *To be based on adaptive functioning (i.e., supports required), rather than solely IQ score. • MILD • Problems with executive functioning and social maturity • Need assistance with complex tasks • Often competitively employed as adults • May live independently or in supported settings with minimal supervision • MODERATE • Concrete approach to situations • Often able to care for personal needs independently • Require support with complex tasks or decisions • SEVERE • Communicate in simple words or gestures • Significant challenges with skills acquisition • Reliant on caretakers throughout life • Require supervision for most activities of daily living • PROFOUND • Often non-verbal • Co-occurring motor, sensory, and physical impairments • Dependent on others for comprehensive care

8. Understanding General Intellectual Functioning • Psychological testing is less reliable in children under 8 years old. • Full Scale IQ is the total score that summarizes performance across multiple cognitive abilities. • However, in some instances FSIQ may not be the best representation of overall intellectual functioning. • It is most useful to examine the index scores when unusual variability is observed across the subtests.

9. Intellectual Indexes Verbal Comprehension: • General knowledge and reasoning skills. Related to formal and informal education. • Language is central our ability to label, organize and manage our internal experiences and the external environment. • Difficulty putting feelings and needs into words makes individuals prone to frustration, aggression, and depression. Perceptual Organization: • Refers to visual-spatial skills. • Ability to create solutions, especially in novel situations. *We want to deliver information to individuals with intellectual disability based on their cognitive strengths and weaknesses.

10. Intellectual Indexes Working Memory: • In-the-moment reasoning tied to attention, concentration, and short-term memory. • Important to learning, flexibility, planning, understanding options, and self-monitoring. • Sensitive to anxiety and depression. Related to anger management. Processing Speed: • Ability to work quickly and efficiently. • Sensitive to motivation and persistence. • Processing speed may negatively effect overall cognitive functioning.

11. Understanding Intellectual Disability • Common deficits in intellectual functioning: • Reasoning • Self-Awareness • Problem-solving • Planning ahead • Abstract thinking • Insight and judgment • Learning from experience • Intellectual impairment may relate to behavioral difficulties: • Delaying gratification • Controlling impulses • Tolerating frustration

12. GENERAL ADAPTIVE FUNCTIONING • Refers to how effectively people cope with common life demands for their given age. • Assessed across multiple environments. General domains are Practical, Conceptual, and Social skills. • Measures include the Vineland Scales, the Behavior Assessment Scale for Children, and the Scales of Independent Behavior. • Identifying adaptive disabilities helps to define individual vulnerabilities and diagnostic subgroups.

13. GENERAL ADAPTIVE FUNCTIONING • Diagnosis of intellectual disability requires one or more • adaptive deficit in activities of daily life: • Self-care • Expressive and Receptive Communication • Social and Interpersonal skills • Community Resources and Activities • Independent living skills (e.g. housekeeping) • Health and safety • Functional Academic and Vocational abilities • Self-direction • Maladaptive behaviors

14. Understanding Intellectual Disability • Diagnostic and Statistical Manual of Mental Disorders (5th Edition) (DSM-5): • Intellectual Developmental Disorder: Intellectual and adaptive deficits with onset during the developmental period that occur between birth to 18 years old. More specifically, a FSIQ of 70 with a margin for measurement error of 5 points. • Intellectual and developmental disabilities are noted to have over 250 causes. Approximately 30% are syndromal and 70% are non-syndromal causes (i.e., no overt abnormalities).

15. Connecticut General Statutes Sec. §17a-210b Subsec. 1-1g Intellectual Disability (formerly referred to as mental retardation) is formally defined as: “A significant limitation in intellectual functioning and deficits in adaptive behavior that originated during the developmental period before eighteen years of age.” As of 2014, all applications for DDS eligibility are reviewed simultaneously for Intellectual Disability and Autism.

16. Connecticut General Statutes: Three basic criteria are required for an individual to be determined eligible for DDS services: 1. Performance at least 2 standard deviations below the mean on tests of cognition/intelligence. A valid Full Scale IQ Score of 69 or below. 2. Evidence of deficits in adaptive behavior regarding how a person performs everyday practical tasks of personal independence and social responsibility. A score of 69 or below on a general adaptive measure.  3. Documentation that deficits in intelligence and adaptive skills were present before the age of 18. Individuals with Prader-Willi Syndrome (a neurobehavioral disorder) are also eligible for DDS services when the diagnosis has been confirmed by a physician through the use of genetic testing.

17. Understanding Intellectual Disability • Psychometric skills and clinical judgment are required to assess cognitive performance, especially to make a diagnosis of intellectual disability. • Confounds or alternate explanations (e.g., inattentiveness, mental health issues, medication side effects) may adversely impact cognitive functioning. • If someone is denied DDS eligibility, we are in no way saying that the individual with presenting problems in cognition and adaptive functioning does not need assistance, guidance, or special attention. • A determination of intellectual disability in the guardianship assessment is not equivalent to a determination of eligibility for DDS services.

18. Psychological Aspects of Guardianship in Intellectual Disability • Two main ways to transfer legal authority from an incapable person to a capable person in the probate court: guardianship and conservatorship. • In both cases, a person is too impaired to make decisions for himself or herself. The main difference between the two has to do with the presence of an intellectual disability. • For a guardianship, an intellectual disability must have existed prior to the age of 18. Past psychological testing with IQ and adaptive scores are needed. • For a conservatorship, an intellectual disability does not have to be present. That is, a person could have borderline intellectual functioning, mental health problems, or physical conditions, which interfere with his or her ability to care for themselves.

19. Psychological Aspects of Guardianship in Intellectual Disability • If psychological testing with IQ and adaptive scores prior to the age of 18 is unavailable, or if the Full Scale IQ and General Adaptive Composite scores during the developmental period were above 69, then a determination of intellectual disability prior to the age of 18 cannot be made. • In these cases, guardianship is not recommended because a finding of intellectual disability cannot be made due to the absence of records from the developmental period, or evidence that exists to indicate that functioning was above the intellectually disabled range.

20. DDS Facts and Figures • We became an independent state agency named the Department of Mental Retardation (DMR) in 1975. Our name changed to the Department of Developmental Services (DDS) in 2007 to reflect dignity and respect. • Our statewide system provides support and services to persons with intellectual disability who reside in family homes, independently, state-operated facilities, Community Companion Homes, and over 800 Community Living Arrangements. • Since 1987 most services by DDS have received federal reimbursement under Home and Community Based Waivers from Medicaid. Our annual budget is approximately $1.2 billion dollars. • The mission of the DDS is to partner with the individuals we support and their families, to support lifelong planning, and to create meaningful opportunities for individuals as valued members of their communities. • Focus on person-centered planning and interdisciplinary team process.

21. DDS Facts and Figures • We serve 16,000 individuals with intellectual disabilities, as well as another 4,000 infants and toddlers in the Birth-to-Three Program. • The Autism Division serves approximately 70 adults with an autism spectrum disorder who do not have intellectual disability. • DDS has approximately 4,000 employees in over 200 job titles. • We have the second largest number of employees in the state only behind the Department of Corrections. • We have 17 offices across three geographic regions and a Central Office in Hartford.

22. North Canaan Hartland Somers Colebrook Suffield Union Enfield Stafford Thompson Norfolk Salisbury Granby Woodstock North Region Canaan West Region East Granby Winchester Windsor Locks Barkhamsted Ellington Putnam East Windsor Ashford Tolland Willington Simsbury Eastford Windsor Goshen Sharon Canton Pomfret New Hartford South Windsor Vernon Bloomfield Cornwall Torrington Killingly Mansfield Hampton Brooklyn Avon Hartford Coventry Chaplin Manchester West Hartford East Hartford Bolton Harwinton Warren Litchfield Burlington Farmington Andover Kent Wethersfield Canterbury Windham Glastonbury Plainfield Columbia Newington Bristol Morris Scotland New Britain Thomaston Sterling Plainville Hebron Washington Rocky Hill Plymouth Lebanon Bethlehem Sprague New Milford Marlborough Berlin Watertown Voluntown Southington Franklin Cromwell Lisbon Wolcott Portland Griswold East Hampton Woodbury Colchester Waterbury Roxbury Norwich Sherman Bozrah Middletown Meriden Middlebury Bridgewater Middlefield Preston Cheshire Prospect New Fairfield Naugatuck East Haddam Salem North Stonington Southbury Brookfield Haddam Montville Wallingford Durham Ledyard Beacon Falls Hamden South Region Oxford Bethany Danbury Chester Newtown Lyme North Haven Waterford Seymour Killingworth Deep River Stonington Bethel Woodbridge North Branford Essex Ansonia East Lyme Groton Old Lyme Monroe Guilford Derby New Haven Old Saybrook Clinton Redding New London Ridgefield Shelton Madison East Haven West Haven Orange Westbrook Branford Easton Trumbull Milford Weston Stratford Wilton Fairfield Bridgeport New Canaan These are DDS Offices Westport Norwalk Stamford Darien Greenwich

23. Autism Spectrum Disorder • Kanner (1943) identified children with lack of social interest. Officially recognized as a diagnosis in 1980. • DSM-5 • Classified as a neurodevelopmental disorder. • Lack of reliable diagnosis led to Autism, Asperger’s Disorder, and Pervasive Developmental Disorder to be placed under the umbrella of Autism Spectrum Disorder. • Core deficits displayed before the age of 3 years in the following areas: • Social communication and interactions • Restricted and repetitive behaviors • The “spectrum” is heterogeneous, as nature, extent, and severityencompasses many conditions (e.g., echolalia and stereotypical presentation-to-high functioning except in novel situations).

24. Autism Spectrum Disorder • Theory of the Mind • Those with an autism spectrum diagnosis often have significant difficulty understanding and appreciating that others have different thoughts, feelings, opinions, intentions, and plans. This may result in the following: • Misreading body language • Misinterpreting social cues • Problems with reciprocation • Difficulty predicting and understanding expectations • Painful awareness of social differences

25. Autism Spectrum Disorder • Cognitive and Psychosocial Functioning • Autism is frequently misassociated with intellectual disability. • Strong language skills can easily be misinterpreted as good communication or social skills. • Signs and symptoms may not manifest until social demands exceed capacities or may be masked by learned “compensatory” strategies. • Often rigidly cling to beliefs, convictions, or rules.