NvLearn the Signs. Act Early. Au7sm and Referral March 27, Nevada Leadership Education In Neurodevelopmental and Related Disabilities

Transcription

1 NvLearn the Signs. Act Early. Au7sm and Referral March 27, 2013 Nevada Leadership Education In Neurodevelopmental and Related Disabilities

2 Acknowledgements Thank you to Centers for Disease Control for informa7on included in this presenta7on

3 Acknowledgements CDC s Learn the Signs. Act Early. program acknowledges the contribu7ons of the Associa7on of University Centers on Disabili7es (AUCD) conducted through the AUCD/NCBDDD Coopera7ve Agreement. NvLEND acknowledges Health Resources Service Administra7on for funding the program. AMCHP Act Early State Grants Nevada State Title V Program

4 Session Objectives Importance of early iden7fica7on Recognizing Red Flags CDC Milestones Booklets Using the Ages and Stages Ques7onnaire Talking to Parents Making referrals

5 Why is it important to screen child development? To find children who need early interven7on services as early as possible in order to: Op7mize early brain development Avoid secondary problems due to missed developmental opportuni7es Help families and caregivers understand how to help their children

6 The Science of Early Childhood Development TPCA 6

7 Key concepts of brain development Experience A child's experiences shape his brain. Rela7onship The reciprocal (back and forth) rela7onship between a child and his caregiver is cri7cal to brain development. Stress Stress nega7vely affects child development. Cri7cal periods The brain becomes less flexible over 7me, so it is important to get it right the first 7me. 7

8 Prevalence Studies Over Time Aaempt to count people who are and are not already diagnosed Prevalence studies mainly on children and in high- resource countries (Canada, US, Sweden, Norway, Denmark, UK, France, Japan) Year Prior to 1990 Mid 90 s 1 in 500 Mid 00 s 1 in 150 Most recent Best Es,mate Prevalence Summary 1 in 2,000 children (au7sm) about 75% with Intellectual Disability (ID) About 1% of children with an ASD about 40-50% with Intellectual Disability (ID)

9 Prevalence by Groups Boys and Girls Average 4.5 boys to every girl iden,fied with ASD Males = ~ 1 in 70 boys Females = ~ 1 in 315 girls Race/ethnicity White, non- Hispanic children with highest ASD prevalence, but variability across sites White, non- Hispanic: ~ 1 in 100 children Black, non- Hispanic: ~ 1 in 140 children Hispanic: ~ 1 in 170 children

10 Changes over time 23% increase from White 70% increase Black 91% increase Hispanic 110% increase

11 Increasing ASD Prevalence Changes in diagnos7c criteria over 7me From a severe disorder to a wide spectrum Increased awareness in the community Changes in availability of services Parents as advocates Development of specialty services Training of professionals Recogni7on that ASDs can occur across the spectrum of intellectual func7oning, and other medical and psychiatric disorders (comorbidi7es) Improved iden7fica7on among some groups (Asperger s, PDD- NOS, girls, Hispanic children and others) Improved early iden7fica7on True increase in symptoms cannot be ruled out

12 Who is at Risk? Clues of suscep7bility s7ll a lot to learn Having a sibling with an ASD Males Older parents Very premature birth Low birthweight Family history of autoimmune disorders Parents with history of psychiatric condi7ons About 10% of children with ASD also have an iden7fiable gene7c condi7on Down syndrome or Fragile X Mul7ple, complex gene7c and environmental interac7ons are likely Pre- and Peri-natal factors: see recent meta-analysis by Gardener et al. 2011

13 What is the current problem? Prevalence of ASDs in about 1% of children in the US More children are iden7fied with an ASD than in the past including: Children receiving services under a specific classifica7on Children diagnosed in a medical or clinical seqng Improving early and accurate iden7fica7on makes a difference in increasing access to interven7on

14 "Learn the Signs" Program To improve early iden7fica7on of au7sm and other developmental disabili7es so children and their families can get the services and support they need

15 Program Overview Components Health educa7on campaign Act Early ini7a7ve Research and evalua7on Target Audiences Parents Early Educators Health Care Providers

16 Act Early Initiative Goal: Improve system collaboration by bringing together key stakeholders in early identification of children with ASD and other developmental disabilities

17 State Examples: Summit Success Strengthening exis,ng partnerships q Florida: Worked with state team to create a flow chart to help professionals in the state navigate systems Improving early iden,fica,on q Kansas: Effec7vely reduced wait 7me for diagnos7c assessments by u7lizing regional au7sm specialists and tele- health technology q Connec7cut: Developing statewide screening guidelines to create a beaer more user friendly system Establishing new partnerships q Massachuseas: Subcommiaee launched a mul7- site pilot project to engage Part C and Community Health Centers in M- CHAT screening and follow- up

18 Learn the Signs Update Missouri: Outreach through WIC Clinics HRSA State Systems Grantee New Implementation Strategy: Integrate messages and materials into programs that serve parents of young children (national programs and state affiliates) Home Visitor Program Head Start/Early Head Start Help Me Grow WIC programs Public Health clinics

19 Program Overview Components Health educa7on campaign Act Early Ini7a7ve Research and evalua7on Target Audiences Parents Early Educators Health Care Providers

20 What about pediatricians The AAP (2000) recommended that pediatricians screen children at 9, 12, 18, 24 and 36 month well child visit. In a 2008 study found that 8 years aser the AAP recommenda7on, the majority of pediatricians aren t following the recommenda7ons due to: Lack of 7me Lack of reimbursement Wait and see aqtude

21 Autism Case Training (ACT)Curriculum: A Developmental-Behavioral Pediatrics Curriculum Screening Diagnosis Caring for Children with ASD Early Warning Signs of Au7sm Screening for Au7sm Communica7ng Concerns: Screening and Diagnosis Results Making an Au7sm Diagnosis Early Interven7on and Educa7on Treatment for ASDs Au7sm- Specific An7cipatory Guidance

22 Milestone Moments Booklet ü Milestones for ages 2 mo through 5 yrs ü Parenting Tips ü Developmental Health Watch

23 Inside Milestone Moments ü Milestone checklists ü Parenting tips on development ü Warning signs ü Referral information

24 Act Early page on AUCD website

25 NvLearn the Signs. Act Early How is Nevada doing for children with au7sm? 2009 Kids Count yr olds yr olds yr olds Data reported by county: Rural 0 Au7sm Treatment Assistance Program: Report to legislature 273 receiving services. According to CDC: Nevada should serve 2130 (1/88) Prevalence of disabili7es at 13%: 24,342 Children with IFSPs: 3089 Missing: 21,253

26 Milestone Booklets For parents Reviews developmental skills from birth to age 5 Social/Emo7onal Language/Communica7on Cogni7ve Motor Provides ac7vi7es to do with child Concerns to raise with pediatrician

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30 NvLearn the Signs. Act Early Partners Nevada Title V/CYSHN Nevada Early Interven7on Services University of Nevada Reno & Las Vegas Psychiatry Pediatrics Speech Pathology & Audiology Coopera7ve Extension Nevada Center for Excellence in Disabili7es Psychology Washoe County School District Nevada Dept of Educa7on, Special Educa7on Division

31 Recognizing Red Flags A Red Flag is any missing skill that is far outside what would be expected for a par7cular age. The Milestones Booklet lists red flag items as Act early items that if observed should prompt you to talk to your doctor. Look at page 17 at the boaom of the page.

32 Conducting Developmental Screening Purpose of screening Iden7fy children at risk for developmental delays Modify your curriculum to address missing skills Make referrals to agencies who can evaluate 32

33 Ages & Stages Questionnaire Screen for developmental delay: 1- month to 5½ years Recommended by American Academy of Neurology, First Signs, The Child Neurology Society, CDC Takes minutes Spanish & English 21 age- appropriate ques7onnaires 2 month intervals from 2 months 24 months 3 month intervals from 24 months to 36 months 6 month intervals from 36 months to 60 months

34 18 Month ASQ-3 Let s look at the Summary Page first Look at the cut- off scores for each area. Scores that fall in the gray area indicate the child should be monitored Scores that fall in the black area indicate a child should be referred for further evalua7on

35 Scoring procedures for ASQ Mark the items as Yes (10), Some-mes (5), or Not Yet (0) Give examples when indicated Does your child say two or three words that represent different ideas together, such as See dog Please give an example of your child s word combina-ons:

36 Example of item observed during a child care routine 24 month ASQ Personal- Social #1 Does your child drink from a cup, puqng it down with liale spilling? Observe child during snack or lunch rou7ne

37 Example of item observed during planned opportunity 24 month ASQ Gross Motor #5 Does your child jump with both feet leaving the floor at the same 7me? Transi7on children from circle 7me to the snack table by having them hop like bunnies. Note whether individual children can jump lising both feet off the floor.

38 Practice Scoring an ASQ-3 Review the Communica7on items on the 18 month ASQ- 3 Watch the video of 19 month old Hannah Score the items on the communica7on sec7on Let s discuss what we found

39 Before you share concerns Be sure to check your child care center policies & procedures before talking to parents about your concerns

40 Sharing Concerns Deliver difficult news with sensitive and understanding (First Signs) Set the stage for a successful conversa7on: Right 7me & place to share concern with liale interrup7ons Sufficient 7me Be ready to listen & offer help through referral Start with how parent views child Put yourself in parent s shoes. Be suppor7ve & Caring Focus on the need to rule out anything serious. No harm in geqng evalua7on Things can only get beaer Refer to other resources. Some parents need to come to this understanding on their own. Give them something to look at. Emphasize importance of early iden7fica7on and interven7on. Provide example if child had physical problem Discuss posi7ve impact on early interven7on Be confident that sharing your concerns is the right thing to do.

41 Scenarios for talking to parents Let s Role Play the following two scenarios Parent who is in denial Parent who approaches you with a concern

42 Goals of the project To increase the number of developmental screenings that are done using a standardized tool, such as the ASQ- 3 Use the ASQ- 3 with 3 children whom you need to screen anyway Share the results with the child s parents Consider using the ASQ- 3 with children with whom you have developmental concerns

43 For more informa7on Learn the Signs. Act Early. program Act Early Ini7a7ve NvLearn the Signs. Act Early. hap://nced.info/learnthesigns