Developmental Disabilities Demystifying a New Population
NOW SERVING: DEVELOPMENTAL DISABILITIES DEMYSTIFYING A NEW POPULATION
A presentation for the Region 10 Autism Conference July 30, 2016
Developed By Emily Helmb o ld t , LBA, BCBA, LPC VCU Autism Center for Excellence
Presented by Justin Creech, PBSF and Darcy Creech, PBSF PARTICIPANT OBJECTIVES
1. Be familiar with the federal definition of developmental disabilities.
2. List at least 3 developmental disabilities
3. List the 3 most common developmental disabilities
4. Have a better understanding of required supports for various developmental disabilities WHO’S HERE? LET’S REVIEW SOME POINTS BRIEF HISTORY OF WAIVERS
Waiver services first began in early 1991 through what was known as the Mental Retardation Waiver. This was eventually renamed the Intellectual Disabilities (ID) Waiver. The Individual and Family Developmental Disability Waiver (IFSDD/DD) was established in 2000 to serve individuals with Developmental Disabilities not meeting the diagnostic criteria for the ID Waiver The Day Support Waiver was started in 2005 to allow individuals on the Statewide Waiver waiting list at least day support services while continuing to wait on the Statewide Waiting list for services. Source: DBHDS, My Life, My Community: Waiver Redesign Informational Series for Providers, Presentation Powerpoint, 4/1/2016 Source: DBHDS, My Life, My Community: Waiver Redesign Informational Series for Providers, Presentation Powerpoint, 4/1/2016 WHAT IS THE OFFICIAL VIRGINIA APPROVED DEFINITION OF DD?
Federal definition developed by the AAIDD: "Developmental disability" means a severe, chronic disability of an individual that (i) is attributable to a mental or physical impairment, or a combination of mental and physical impairments, other than a sole diagnosis of mental illness; (ii) is manifested before the individual reaches 22 years of age ; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in three or more of the following areas of major life activity: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, or economic self-sufficiency; and (v) reflects the individual's need for a combination and sequence of special interdisciplinary or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated. DD DEFINITION CONTINUED
An individual from birth to age nine, inclusive, who has a substantial developmental delay or specific congenital or acquired condition may be considered to have a developmental disability without meeting three or more of the criteria described in clauses (i) through (v) if the individual, without services and supports, has a high probability of meeting those criteria later in life.
Also, Traumatic Brain Injury incurred up to age 22 Source: DBHDS, My Life, My Community: Waiver Redesign Informational Series for Providers, Presentation Powerpoint, 4/1/2016 Source: DBHDS, My Life, My Community: Waiver Redesign Informational Series for Providers, Presentation Powerpoint, 4/1/2016 Source: DBHDS, My Life, My Community: Waiver Redesign Informational Series for Providers, Presentation Powerpoint, 4/1/2016 SUPPORTS INTENSITY SCALE
Supports Intensity Scale
Source: DBHDS, My Life, My Community: Waiver Redesign Informational Series for Providers, Presentation Powerpoint, 4/1/2016 SIS LEVELS
LEVEL 1 Score 116 or more Less impact
Level 2 Score 100-115
Level 3 Score 85-99
Level 4 Score 84 or less More impact
Intermittent
Limited
Extensive
Pervasive
Source: DBHDS, My Life, My Community: Waiver Redesign Informational Series for Providers, Presentation Powerpoint, 4/1/2016 FACTS ABOUT DEVELOPMENTAL DISABILITIES
Over 6 million people have a developmental disability
15% of children in the US ages 5 to 17 have one or more developmental disabilities.
Autism is a developmental disability
Intellectual Disability is not necessarily a developmental disability (Look at areas of functioning…) TRENDS IN DD 1997-2008
CDC and HRSA study of 119,367 children ages 3–17 found:
Increased 17% over this period
Prevalence of autism increased 289.5%
Prevalence of ADHD increased 33.0%
Prevalence of hearing loss decreased 30.9%. EXAMPLES OF DEVELOPMENTAL DISABILITIES
Cerebral Palsy Fragile X Fetal Alcohol Syndrome Learning disabilities Hearing loss Autism Visual impairment Attention Deficit Hyperactivity Disorder Spina bifida Intellectual Disability Downs Syndrome Brain Injury MOST COMMON DEVELOPMENTAL DISABILITIES
As of 2014, according to the Centers for Disease Control:
Intellectual Disabilities 1 in 120 Cerebral Palsy 1 in 323 Autism Spectrum Disorder 1 in 68 children . (1 in 42 boys and 1 in 189 girls)
. What about Down Syndrome?? 1 in 1000 THREE MAIN CRITERIA
originated at birth or during childhood
is expected to continue indefinitely
substantially restricts the individual's functioning in several major life activities. DD DETERMINATION
ID- Psych Eval Cerebral Palsy- Medical Evaluation Autism- Pediatrician, Diagnostic Clinic, Developmental Ped, etc. Down Syndrome- Pediatrician, Geneticist, etc.
How to determine: “substantial functional limitations in three or more of the following areas”? . Vineland Adaptive Behavior Scales . Other adaptive behavior scales 2 TYPES OF DD ELIGIBILITY NEEDED
Diagnostic eligibility Functional eligibility . Disability diagnosis . Virginia Individual Dev . Adaptive Behavior Disability Eligibility Survey Assessment “VIDES” . Vineland . DABS (in development) . Adaptive Behavior Assessment System (ABAS) . Adaptive Behavior Evaluation Scale (ABES) – similar to the ABAS, but used only for children . Scales of Independent Behavior-Revised (SIB-R) ADAPTIVE BEHAVIOR ASSESSMENT
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 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 VINELAND
Covers the full spectrum of adaptive behavior Three domains— . Communication, . Daily Living Skills, . Socialization . correspond to the three broad domains of adaptive functioning specified by the American Association on Intellectual and Developmental Disabilities and by DSM-5. QUALIFICATIONS TO ADMINISTER VINELAND II
QUALIFICATION LEVEL B: A master's degree in psychology, education, occupational therapy, social work, or in a field closely related to the intended use of the assessment, and formal training in the ethical administration, scoring, and interpretation of clinical assessments. OR Certification by or full active membership in a professional organization (such as ASHA, AOTA, AERA, ACA, AMA, CEC, AEA, AAA, EAA, NAEYC, NBCC) that requires training and experience in the relevant area of assessment. OR A degree or license to practice in the healthcare or allied healthcare field. OR Formal, supervised mental health, speech/language, and/or educational training specific to assessing children, or in infant and child development, and formal training in the ethical administration, scoring, and interpretation of clinical assessments. DIAGNOSTIC ADAPTIVE BEHAVIOR SCALE “DABS”
In development by AAIDD
Comprehensive assessment of adaptive behavior CLOSER LOOK AT THE TOP 3
Intellectual Disability
. Intellectual disability is a disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18. HOW IS ID DIAGNOSED?
. Measurement of IQ Stanford-Binet, Wechsler, Woodcock Johnson
. Measurement of Vineland Adaptive Behavior Adaptive Behavior Scale, Woodcock Johnson Scales of Ind Behavior, Diagnostic Adaptive Behavior Scale AUTISM SPECTRUM DISORDER
Characterized, in varying degrees, by difficulties: . social interaction . verbal and nonverbal communication . repetitive behaviors.
SPECTRUM- varying levels of impact, functioning, comorbidity LEVEL OF AUTISM
Level 1 . Requiring support Level 2 . Requiring substantial support Level 3 . Requiring very substantial support WHY ALL THE TALK OF AUTISM??
FASTEST growing developmental disability in world
The cost of lifelong care for someone with Autism can be reduced by 2/3 with early diagnosis and intervention
Persons with ASD have poorer community integration and employment outcomes than any other developmental disability. HOW IS AUTISM DIAGNOSED?
MCHAT (Modified C h e c k l i l s t for Autism in Developmental Screening Toddlers) 16 - 3 0 m o n t h s
CAST - (Childhood Autism Spectrum Test) - 4 -1 1 Comprehensive Diagnostic y e a r s , “ A s p er g e r s ” idendification Evaluation CARS (Childhood Autism Rating Scale): For > 2 yrs. old; 15 - item, direct observation; 5 - 10 . Multidisciplinary m i n u t es . Developmental ADOS (Autism Diagnostic Observation Schedule): For toddlers to adults; direct Pediatrician observation, 30 - 4 5 m i n u t es
. Pediatric Neurologist ADI - R (Autism Diagnostic Interview): For mental age > 2 yrs.; structured interview; 1.5 . Geneticist – 2.5 hours. Best for older . Audiologist adolescents/adults. GARS(Gilliam Autism Rating Scale) 3 to 22 . Developmental y e a r s o l d Psychologist . Psychiatrist THE PROCESS FOR SCREENING CEREBRAL PALSY
non-progressive brain injury or malformation
occurs while the child’s brain is under development
primarily affects body movement and muscle coordination
before birth, during birth, or immediately after birth
65%will have mild cognitive impairment or ID 35% will NOT SEVERITY LEVELS OF CEREBRAL PALSY
Mild – Mild Cerebral Palsy means a child can move without assistance; his or her daily activities are not limited. Moderate – Moderate Cerebral Palsy means a child will need braces, medications, and adaptive technology to accomplish daily activities. Severe – Severe Cerebral Palsy means a child will require a wheelchair and will have significant challenges in accomplishing daily activities. No CP – No CP means the child has Cerebral Palsy signs, but the impairment was acquired after completion of brain development and is therefore classified under the incident that caused the Cerebral Palsy, such as traumatic brain injury or encephalopathy. HOW IS CEREBRAL PALSY DIAGNOSED?
No single test Reflexes, muscle Sometimes can be tone, posture, dx at birth coordination, etc. Majority diagnosed MRI, cranial by age 2 ultrasound, CT Scan Multiple specialists can be involved Developmental Pediatrician, Neurologist, Pediatrician READY, SET, SUPPORT!
In your group choose a scribe and a person to report out Read your case notes and review SIS scores
List: . What type of professional may have made the diagnosis? . What type of assessment might they have used? Guess… . Any additional information needed to decide what services needed? . At least 3 services to be requested (besides case management)
EXTRA CREDIT: What Tier and level would you guess? CASE STUDY-ELLEN
Meet Ellen
A ge 22 ASD Level 3 IQ 98 Last year of high school and has an internship at a local hospital Works with job coach, special education teacher, work supervisor Lives at home with mom and dad Can do laundry independently, needs supervision cooking Loves to color, has “fits” when things aren’t right (wanted seafoam green crayon, staff handed her a crayon and she screamed “it’s not seafoam green that’s pine forest green!”) Screams when something unexpected happens (new job coach, substitute teacher) Needs repetition and visual presentation to learn new activities Requires high level of structure for social activities (things have to go as planned) Wants to move out eventually Sped ed 100% self contained Highly verbal yet monotonic Visual supports: uses IPod for checklists, 2D checklists and task analysis, social stories, scripts, 5 point scale for emotional regulation, etc . Has great difficulty making friends and becoming part of social groups
CASE STUDY -CHRIS
Meet Chris
20 years old Autism diagnosis level 3 (most impacted) IQ 78 In last year of high school and participating in an internship at a hospital Support persons: special education teacher, job coach, on site supervisor Low verbal ability (poor expressive language) Episodic severe behavior consists of physical aggression (pushing/shoving), refusal to move (sitting down when upset) and has had numerous Functional Behavior Assessments and Behavior Intervention Plans Gets very upset if routines are interrupted, something isn’t right (a tear in a piece of clothing or crooked picture on wall), or there are unexpected transitions Lives at home with mother and father . Home routinized, basic self-care, no cooking, does laundry . Might want to live in an apartment or group home one day . Difficulty learning new tasks at home . Behavior is stable at home usually . Involved in church Sunday school and other activities at church. Needs specialized supports to learn new tasks . Visual supports (checklists, task analysis, schedules) . Uses the 5 point scale for emotional regulation to identify when he may need a break . Scripts for various conversations or social situations . Narrow range of interests consisting of academy awards history (has a book with all the information in it)
A STEP IN THE RIGHT DIRECTION WAIVER CONTACTS AND INFORMATION
Information about the Waiver Redesign, Forms, and frequently asked questions can be found at: http://www.dbhds.virginia.gov/individuals -and- families/developmental-disabilities/my-life-my-community
Contact any of the local Waiver Experts and or your local Community Resource consultant, information can be found at: http://www.dbhds.virginia.gov/professionals -and-service- providers/developmental-disability-services-for-providers/provider- development
You may also send your email to [email protected] to receive periodic email updates. [email protected]
Emily Helmboldt, LBA, BCBA, LPC Technical Assistance Associate VCU-Autism Center for Excellence POSITIVE BEHAVIOR CONSULTING, LLC
Justin Creech, PBSF Darcy Creech, PBSF www.positivebehaviorconsulting.com [email protected] (804) 221-8745