Developmental Disabilities Definitions, ICF-CY, and F-words in childhood disabilities

Transcription

1 Developmental Disabilities Definitions, ICF-CY, and F-words in childhood disabilities Anne M. Leavitt, MD Developmental Behavioral Pediatrics October 8, 2018

2 DEVELOPMENTAL DISABILITIES/DELAYS: definitions Developmental Early childhood, developmental period Not injury in adulthood (TBI, stroke) Immaturity Assume will grow out of it Delay May or may not persist Disability Impaired function

3 Streams of Development Gross motor Fine motor Language Expressive Receptive Problem solving (cognitive) Social

4 DEFINITIONS Surveillance ongoing, informal Listen to parents and take concerns seriously Screening ASQ, MCHAT-R/F Evaluation Standardized tests Delay vs. Deviance

5 CSHCN: those who have or at risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally tp://

6 How common? Children with special health care needs are present in 20 percent of U.S. households with children. The prevalence of special health care needs in children increases with their age. Among preschool children (ages 0 through 5), just under 8 percent have special health care needs. National Survey of Children with Special Health Care Needs MCHB / HRSA childhealthdata.org 2012

7 CSHCN by age and sex

8 CSHCN report one of the following: Health Issue % Health Issue % Learning Disability 27 Speech problems 16 ADHD 32 Tourette Syndrome 0.2 Depression 8.5 Asthma 30 Anxiety 13 Diabetes 1.4 Behavioral problems 14 Epilepsy 3 Developmental Delay 15 Hearing impairment 4 Intellectual Disability 5 Vision Impairment 3 Autism Spectrum Disorder 8 Bone, joint muscle issues 8 Cerebral Palsy 1 Brain Injury 1 childhealthdata.org 2012

9 First things first Our first, and most important job, is to understand a child s strengths, challenges, and function in the real world. Only after that is done should we move on to consider appropriate diagnoses. The best label for Johnny is Johnny. Every child and family is unique, and should be appreciated.

10 Developmental Quotient DQ = Developmental Age/ Chronologic age X 100 DQ <70 DQ DQ >85 Delay Monitor Typical range *Perform for each stream of development

11 Patterns in Development Motor Problem Solving Rec/Exp language Social ID V D D D CP D V-T V-T D Vision D D T D Hearing loss T T D V-T AUTISM T V-T D D T = typical V= variable D = delayed

12 Ages of early diagnosis/recognition 0-12 mo. 1-2 yr. 2-3 yr. 3-4 yr. ID, mod/sev. ID, mod ID, mild ID, mild VI/HI HI HI CP CP CP mild Autism Autism / Language delay Language Delay

13 International Classification of Functioning, Disability and Health and F-words in childhood disability Anne M. Leavitt, MD LEND seminar October 8, 2018

14 ICF The International Classification of Functioning, Disability and Health (ICF) is a framework for describing and organizing information on functioning and disability. It provides a standard language and a conceptual basis for the definition and measurement of health and disability. The ICF was approved for use by the World Health Assembly (WHO) in 2001, after extensive testing across the world involving people with disabilities and people from a range of relevant disciplines. The ICF integrates the major models of disability. It recognizes the role of environmental factors in the creation of disability, as well as the relevance of associated health conditions and their effects.

15 ICF-CY International Classification of Functioning, Disability and Health for Children and Youth, known as the ICF-CY, was published in The ICF-CY is derived from, and compatible with, the International Classification of Functioning, Disability and Health (ICF) (WHO, 2001). It includes further detailed information on the application of the ICF when documenting the characteristics of children and youth below the age of 18 years.

16 Acknowledges interaction between different factors The ICF conceptualizes a person's level of functioning as a dynamic interaction between her or his health conditions, environmental factors, and personal factors. It is a biopsychosocial model of disability, based on an integration of the social and medical models of disability.

17 What is the ICF framework?

18 Interacting Factors

19 What are the features of the ICF framework? A universal model for all people, not just individuals with disability. A holistic model focuses on the whole person + their environment A strengths-based model highlights what people can do An interactive model shows the interaction between a person + their environment

20 Why is the ICF framework important? It is currently the international standard for describing health and disability. It provides a common language and can be used to guide clinical practice, social policy, education, and research. It changes how we think about and approach disability.

21 A reimagining of the ICF-CY

22 CanChild Dr. Peter Rosenbaum, one of the authors, co-founded CanChild in CanChild is a non-profit research and educational centre located within the School of Rehabilitation Science at McMaster University in Hamilton, Ontario, Canada. Our research is focused on improving the lives of children with a variety of developmental conditions and their families over the lifecourse. The CanChild website has many resources, and is the source I used for many of the following slides.

23 The F-words focus From CanChild

24 What are the F-words of childhood disability? From CanChild

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26 The ICF / F-words model moves us away from older attitudes and approaches Diagnosis-based treatments can fix impairments (such as spasticity in CP) But changes in impairments often DO NOT lead to changes in functioning. Normal movement and motor control are the goal. Variation is the usual situation, and we cannot produce normal. Children s everyday activities (walking, talking) need to be done normally. Normality (what most people do) is not the only way that things can be done. De-emphasize: fixing, normality, disability Promote: development, child and family strengths, achievement, being family-centered

27 RED FLAG Any time there is a history or exam consistent with LOSS of SKILLS (regression) THINK metabolic, genetics w/u, neuroimaging, seizures, hydrocephalus, toxin exposure, autism

28 Language Delay: Definitions Language- a system of verbal, written, or gestured symbols used to communicate information or feelings. Components: phonology, morphology, syntax, semantics, pragmatics Speech- The physical production of spoken language. Components: articulation, phonology, voice quality, pitch, loudness, resonance, fluency, rate, rhythm

29 Identify early! 5-10% of all children have developmental language disorder ( at age 3-4 years) 15% of two year olds do not have 50 single words and/or two word combinations. Delayed language may be a marker of other developmental disorders Language is the BEST predictor of later cognitive function Early intervention yields best outcomes

30 Typical Language Development Expressive: two phases Social smile 5 wk Coos 6-8 wk Laughs 3-4 mo Raspberry 4-5 mo Squeals 5 mo Babbles 6 mo (HL: until 6-8 mo) 1 st word mo Immature jargon 12 mo 4-6 words 15 mo 2 words mo Pronouns indiscrim 2 y Tells stories 4 years, 100% intelligible

31 Typical Language Development Receptive Infant Alerts to voice 1 mo Regards speaker 3 mo Listen then vocalizes 5 mo Enjoys gesture games 9 mo Understands no 9 mo Orients to name 8-10 mo Command, with gesture 12mo Toddler 1 step command, without gesture 14 mo 1 body part 15 mo Fetches on command 16 mo Points to picture 18 mo 6 body parts 20 mo 2 step command 24 mo

32 Disorders with language delay Developmental Language Disorder 5-10% ID 3% Hearing Loss/Deaf.5-1% Autism 2%

33 RED FLAG All children with language delay should be referred for hearing assessment. Infants who are deaf may have normal prelinguistic expressive language until 6-9 months of age. 6-15% of kids who have permanent hearing loss missed identification at newborn screening. Children can have acquired hearing loss, so don t just rely on NBS.

34 Language Delay: hearing loss yer_detailpage People with hearing loss can often HEAR something but cannot understand or comprehend what is being said

35 Joint Attention Skills* TYPICAL ASD 8-10 months Gaze monitoring No eye contact months Following a point Does not respond to request oh look! months PIP (protoimperative) months PDP (protodeclarative) Develops advanced self help skills: prefers to get things themselves *Consistently absent months Show and tell Brings object to parent to obtain help or indicate request *Joint attention deficits appear to be specific to ASD and reliably differentiate children with ASD from other developmental disabilities.

36 Protodeclarative Pointing To show!

37 Social Delay: RED FLAGS Lack of response to name Lack of eye gaze and monitoring Lack of gestures for communication (waving, pointing, head nodding) Lack of requesting items or attention Lack of bringing and showing to share interest Free, online MCHAT-R screener with scoring

38 Problem solving Problem solving milestones are evidence of cognitive abilities, or intelligence, without the use of language. Patterns.. Typical PS = RL > EL..COMMON, often resolves Typical PS > RL > EL less common, often LD Low PS, Low RL, Low EL = ID

39 Blocks Typical development Regards 3 mo Attains 5-6 mo Takes 2 nd 6-8 mo Releases into cup 12 mo Takes a 3 rd mo Builds a tower of months Builds a tower of 4 18 months Builds a tower of 6 24 months Train months

40 Global developmental delay A significant delay in 2 or more streams of development NOT a diagnosis NOT usually regression or loss of skills Can be used for services in health care setting (ICD , ICD-10 F88), Early Intervention and for Public Schools. Can t be used for services after age 6-9 years.

41 Intellectual Disability Mild (Intermittent Support) IQ~ Vast majority 85% More common in boys Moderate (Limited Support) IQ ~ Severe (Extensive Support) IQ~ Rare.5% Ratio of boys to girls is equal Think about Rett Syndrome in girls Profound (Pervasive Support) IQ < 24

42 Intellectual Disability: Known causes Prenatal (60-75%) CNS malformation Chromosomal abnormality Syndrome Genetic Toxins Infection Neurocutaneous syndrome Malnutrition Perinatal (10%) Hypoxia Neonatal seizures Postnatal (1-10%) CNS infection Stroke/Hemorrhage Trauma/Abuse Hypoxia Degenerative Epileptic encephalopathy Metabolic Complications of prematurity

43 ETIOLOGY (CAUSE) Genetic: De novo (Prader-Willi Syndrome) familial (Fragile X Syndrome) Prenatal: Exposure to alcohol, medications, other substances Uterine factors: IUGR Perinatal: HIE Trauma: TBI Environmental/Social factors

44 RISK FACTORS We often cannot determine exact cause However, we often can identify risk factors Cause may be multifactorial and intertwined Prenatal alcohol exposure, poor maternal nutrition, chaotic social situation, family history of significant learning problems, etc. Be mindful of the fact that parents frequently blame themselves for their children s problems.

45 Nature vs nurture Early nurturing experiences activate synapses, strengthen existing pathways, create new pathways. Lack of experience increases apoptosis (cell death) and synaptic pruning Adverse Childhood Experiences (ACEs)

46 Anticipating behavioral problems in medical/assessment settings Due to language delays Due to social delays/deficits Due to sensory issues Loud, new, unexpected sounds Doesn t know what to expect New place, new people All this leads to ANXIETY BEHAVIOR IS COMMUNICATION

47 Preparation for any change in routine or new experience helps Discuss visit/change at appropriate time (not too early or late) Pre-visit tour and/or pictures Use social stories/ story books Visual schedule and supports Bring comforters and distracters Does child have light and noise sensitivities? Sunglasses for bright lights Earphones with +/- music for sound

48 So, you ve identified a child with developmental concerns. Now what? Any age: NDV Clinic/CDC/CAC for diagnostic evaluation Under 3 years old Birth-to-Three programs County Family Resources Coordinator (FRC) Private therapies 3 years + Child Find for evaluation by school district Private therapies

49 Take home messages Listen to parents and take their concerns seriously. Don t be afraid to talk about your observations and concerns with parents. If you ve noticed something, the parents probably have, too. IF UNSURE, REFER

50 DON T DELAY SERVICES NEVER delay referral to a Birth-to-Three program or Child Find while you wait for a diagnostic evaluation!!!!!!!! A child does NOT need a confirmed diagnosis (ASD, for example) to qualify for services, just confirmed delays. Therapy and educational interventions should be tailored to a child s challenges and needs, NOT necessarily to their diagnosis.