Developmental Screening Programs in Arizona: What Works?

Transcription

1 Developmental Screening Programs in Arizona: What Works? Catherine Riley, MD Developmental Behavioral Pediatrician Assistant Professor of Pediatrics University of Arizona Jennifer Andrews, PhD Assistant Professor of Pediatrics University of Arizona

2 1. Discuss the need for early identification of developmental delays 2. Define Surveillance and Screening 3. Review AAP Recommendations and Algorithm 4. Screening Tools pros and cons 5. Program Implementation success and roadblocks 6. Best Practice and Next Steps

3 History Behind Developmental Screening IDEA 1986 EHA adds birth to 3y 1990 Changed to IDEA PART C 1992 Reaffirme d 1997 Reaffirme d 2004 Reaffirme d 2011 Updated Bright Futures 1990 HRSA & CMS Committee st Edition nd Edition Revised rd Edition AAP 2001 Screening for early identificatio n 2006 Screening algorithm released 2010 Reaffirmed LTSAE 2004 Health Education Campaign 2008 Screening algorithm released 2015 USPSTF statement

4 Early Identification of children at risk for developmental disabilities Early Evaluation and Diagnosis for developmental conditions Early Intervention and services Improved child, family, and society outcomes Research has shown that the earlier you intervene the more effective and less costly your intervention will be and the bigger the effect on the child s developmental trajectory. Center on the Developing Child at Harvard University (2008, 2010)

5 From Age 0 3 the brain grows to 80% of its adult size Wiring and connections in the brain form much faster during this time The brain s ability to change decreases with age

6 Children Receiving IDEA Services 2014 Percent of total population 20% 18% 15% 13% 10% 8% 5% 3% 0% Under 3 3 to 5 6 to 21 Age of Child in Years Needing Services Receiving Services US Department of Education: 38 th Annual Report to the Congress on the implementation of the IDEA Act 2016

7 21.7% of children age 10 months to 5 yrs received standard developmental screening during a well child visit Rank 47 in the country in 2016 (based on data from ) There is a lot of room for improvement

8 AAP Screening Algorithm Identifying Infants and Young Children With Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening Council on Children With Disabilities, Section on Developmental Behavioral Pediatrics, Bright Futures Steering Committee and Medical Home Initiatives for Children With Special Needs Project Advisory Committee Pediatrics 2006;118;405 DOI: /peds

9 Developmental screening results provide more evidence behind your referral and communicates critical information for specialists and evaluators to identify high priority cases Early detection provides an understanding of the community needs for early intervention and can provide critical data to justify the benefits of early identification. Families may be wary of bringing up concerns if you do not ask. You will prevent future issues by addressing concerns as early as possible. ABA Therapy will not be covered by DDD/ALTCS if the child is not flagged at-risk for autism prior to age 4.

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11 Process of identifying children at risk of developmental delays by health care professionals and paraprofessionals during all interactions

12 Use of a standardized tool to identify and refine the risk Approved tools are: - Brief - Standardized - Valid and Reliable - Sensitive and Specific

13 70% 7 out of 10 children with developmental disabilities were not identified until they started school 67% Clinical assessment without screening missed delays in 2 out of every 3 children under the age of 2 (Palfrey, J.S., et al., Early identification of children's special needs: a study in five metropolitan communities. J Pediatr, (5): p ) Hix-Small, H., et al., Impact of implementing developmental screening at 12 and 24 months in a pediatric practice. Pediatrics, (2): p )

14 AAP Guidelines Improved parental satisfaction AHCCCS now reimburses Improved Practice and Patient Outcomes

15 Screening Doubled identification rates of delays Doubled referrals for Early Intervention More children qualified for Early Intervention Services Timelier process Guevara, J.P., et al., Effectiveness of developmental screening in an urban setting. Pediatrics, (1): p Most over-referrals on standardized screens are children with below average development and psychosocial risk factors that could benefit from additional services Glascoe, F.P., Are overreferrals on developmental screening tests really a problem? Arch Pediatr Adolesc Med, (1): p

16 54% diagnosed with Autism Spectrum Disorders Of children who fail the M- CHAT Screen 89% diagnosed with developmental delay 98% show a developmental concern warranting evaluation Chlebowski C et al. Large-scale use of the modified checklist for autism in low-risk toddlers. Pediatrics Apr;131(4):e1121-7

17 It s too time consuming and interrupts clinic flow It s not feasible in a busy practice AAP 17 Practices >85% Screen post-training ArizonaLEND Project in Yuma increased screens from 0% to 90% NC ABCD 10 counties increased screen from 15% to 70% How will your practice improve? (King, T.M., et al., Implementing developmental screening and referrals: lessons learned from a national project. Pediatrics, (2): p ) (Earls, M.F. and S.S. Hay, Setting the stage for success: implementation of developmental and behavioral screening and surveillance in primary care practice--the North Carolina Assuring Better Child Health and Development (ABCD) Project.

18 Surveillance At every well child visit Developmental Screening When your surveillance demonstrates a risk AND 9, 18 and 24 months (or 30 months) Screening for Autism Spectrum Disorders Whenever your surveillance demonstrates a risk AND 18 and 24 months (or 30 months) AAP Policy Statement, Pediatrics 2006; Policy statement in 2006, reaffirmed in 2010 Johnson, Pediatrics 2007;

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20 Broad screening tools: Address gross motor skills Fine motor skills Language and communication Problem solving/adaptive skills Behavior Personal social skills ASD specific tools Specific to social communication and behavioral deficits present in autism

21 Should be culturally sensitive Reliable (ability to produce consistent results) Validity (ability to discriminate between those at risk for delay and typical results) Sensitivity accuracy in identifying delayed development (want at least 70-80%) Specificity-accuracy in identifying those who are not delayed (want at least 70-80%)

22 Developmental Screens Ages and Stages (ASQ-3) Pediatric Evaluation of Developmental Status (PEDS) Autism Screens Modified Checklist for Autism in Toddlers Revised with Follow- Up (M-CHAT-R/F) Ages and Stages Social- Emotional (ASQ:SE-2)

23 Overview of Tools PEDS Overall development tool Ages 0 8 years 3-5 minutes to complete 5 minutes to score Administer at 9-, 18-, 24- month visits or whenever there is a concern M-CHAT-R/F Autism screen Ages months 2-3 minutes to complete <2 minutes to score Administer at 18- and 24- month visits or whenever there is a concern

24 Overview of Tools ASQ-3 Overall development tool Ages 0 5 years minutes to complete 3 minutes to score Administer at 9-, 18-, 24month visits or whenever there is a concern ASQ:SE-2 Autism screen Ages 6 60 months minutes to complete 3 minutes to score Administer at 18-, and 24month visits or whenever there is a concern

25 Administration 1. Parent or someone who knows the child well should complete the form 2. Questions are open-ended so if no text is written you must check for comprehension issues Same form for all ages Scoring 1. Comments are reviewed and coded into the appropriate developmental domains. A domain only needs to be marked once despite multiple examples 2. Any domain where parental concerns are marked yes or a little are coded into their developmental domains 3. Providers can add concerns but cannot take away parental concerns 4. Sum the marked circles and squares 5. Interpret Score

26 PEDS Tool Decision Paths PATH A Two or more predictive concerns Yes Two or more concerns about self help, social, school, or receptive language skills Yes No Refer for audiological and speech language testing. Use professional judgment to decide if referrals are also needed for social work, OT, PT, mental health, etc. Refer for intellectual and educational evaluations. Use professional judgment to decide if speech language, audiological, or other evaluations are also needed. PATH B One predictive concern Yes It s a health concern only Yes No Conduct screen appropriate to health concern Administer second stage developmental screen Screens passed. Counsel in areas of concern and watch Screens failed. Refer for additional testing Screens passed. Counsel in areas of concern and watch Screens failed. Refer for additional testing PATH C Only nonpredictive concerns Yes Counsel and developmental promotion in areas of difficulty and follow up after several weeks If no change at follow up, screen for emotional/behavioral problems and refer as indicated. Otherwise refer for parent training, behavioral intervention, etc.

27 PEDS Tool Decision Paths PATH D Parental difficulties communicating Yes Is there a foreign language barrier Yes No Use one of the foreign language version of the PEDS available, seek a translator, or refer for screening elsewhere Use a second screen that directly elicits children s skills or refer for screening elsewhere PATH E No Concerns Yes Administer PEDS again at next check point

28 Administration 1. Parent or someone who knows the child well should complete the form 2. Each activity must be tried with child before the questions can be answered 3. Before scoring, administrator should check for unanswered items and get answers if possible. If not possible no more than two items may be missing for the score to be valid Scoring 1. Correct asterisked items as needed 2. Score 10 points for Yes; 5 points for sometimes and 0 points for not yet 3. Total the domain points 4. Transfer to summary sheet 5. Interpret score

29 BLACK ZONE Referral needed Yes Any area in the black zone requires referral Refer to evaluation: Early intervention, neurology, behavioral pediatrics Refer for screening: Hearing, vision, speechlanguage GRAY ZONE Monitoring Zone Yes Scores are close to cut off but referral not yet required Provide developmental promotion materials appropriate to area. Rescreen child to determine progress in area or decline WHITE ZONE No Concerns Yes No referrals needed Encourage family to continue to perform developmentally appropriate activities

30 Administration 1. Parent or someone who knows the child well should complete the form 2. Parents must complete all items 3. Before scoring, administrator should check for unanswered items and get answers if possible. Parents may be hesitant to pick yes or no prompt them to choose the answer that is most often true Scoring 1. Items 2, 5 and 12 correct response is NO 2. All remaining questions correct response is YES 3. Count the number of incorrect responses and code at the bottom of the form 4. Interpret score

31 M-CHAT-R/F Paths

32 FAILED M-CHAT-R/F 3 7 Fails on Screen HIGH RISK 8 or more Fails on Screen 2 or more Fails on Interview

33 Administration 1. Parent or someone who knows the child well should complete the form 2. Each behavior must be scored based on how their child usually acts not when sick, tired or hungry 3. Before scoring, administrator should check for unanswered items and get answers if possible. If not possible no more than four items may be missing for the score to be valid Scoring 1. Review comments for possible concerns 2. Score 10 points for X; 5 points for V and 0 points for Z. Checked concern = +5 points 3. Total the domain points 4. Transfer to summary sheet 5. If 3 items are missing adjust score by 5 points 6. Interpret score

34 BLACK ZONE Referral needed Yes Is the total score above the cutoff Refer to specialist: Early intervention, neurology, behavioral pediatrics, mental health provider Provide developmental promotion materials appropriate to area or refer to support systems GRAY ZONE Monitoring Zone Yes Scores mean referral not yet required if male if female consider referring Provide developmental promotion materials appropriate to area. Rescreen child to determine progress in area or decline WHITE ZONE No Concerns Yes No referrals needed Encourage family to continue to perform developmentally appropriate activities

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36 PEDS If notes list a domain check the box or circle for that domain, under the correct age Add up all the checked circles and score Add up all the checked boxes and score M-CHAT-R Items 2, 5 and 12 correct response is no All other items correct response is Yes Add up all the incorrect responses and score ASQ-3 Score points Yes = 10 Points Sometimes = 5 points Not yet = 0 points Add up scores in each domain for domain score Transfer domain scores and worries or concerns to summary sheet ASQ:SE-2 Score points Z = 0 Points V= 5 points X = 10 points Concern checked = +5 points Transfer score and concerns or worries to summary sheet

37 Minor Concerns in behavioral and social-emotional domains Developmental promotion for mom to handle tantrums, separation anxiety and new situation adaptation issues No referrals needed Path C early follow-up to assess improvement in areas of concern

38 Some concern in problem solving ability Developmental promotion for mom to handle adapting issues and problem solving Rescreen No referrals needed

39 No Concerns Developmental promotion for mom to handle adapting issues No referrals needed

40 Low risk no follow-up interview needed Score = 2 No referrals needed Developmental promotion for child handling new situations and noises

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42 PEDS If notes list a domain check the box or circle for that domain, under the correct age Add up all the checked circles and score Add up all the checked boxes and score M-CHAT-R Items 2, 5 and 12 correct response is no All other items correct response is Yes Add up all the incorrect responses and score ASQ-3 Score points Yes = 10 Points Sometimes = 5 points Not yet = 0 points Add up scores in each domain for domain score Transfer domain scores and worries or concerns to summary sheet ASQ:SE-2 Score points Z = 0 Points V= 5 points X = 10 points Concern checked = +5 points Transfer score and concerns or worries to summary sheet

43 Roger has 4 predictive concerns that are not possibly age related He also has 2 non predictive concerns Referrals to audiology, speech, behavior/developm ental evaluations are recommended and more frequent follow-up to track delays needed Refer to AzEIP

44 Some concern in communication and large concern in personal-social Mom also concerned with hearing and some behavior Early return visit Refer to hearing and behavioral evaluations and Early Intervention

45 Significant concerns Referrals to EI and behavioral assessment needed, hearing screen recommended

46 High Risk no follow-up interview needed Score = 11 Refer for hearing screen, EI, Developmental evaluation and speech

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48 ASQ-3 Birth to 60 months min 6 th grade reading level English, Spanish, French, Korean Can mail out forms as first level screening to determine who needs further evaluation (early intervention, preschool) PEDS Birth to 8 years old 2-10 min Written at 4 th to 5 th grade level English, Spanish, Vietnamese

49 MCHAT R/F months <5 min for parents to complete Free Includes follow up interview (5-10 minutes) Simplified scoring (not all children need follow up interview) ASQ: SE months minutes 5 th to 6 th grade reading level Free Available in English and Spanish

50 The Act Early Initiative promotes collaboration among early childhood programs in states and territories so children with autism or other developmental disabilities can be identified early and get the services and support they and their families need. This is accomplished through a public health campaign designed to encourage developmental monitoring by parents, early childhood educator and pediatricians. Extensive free materials available

51 Objectives 1. To develop and maintain statewide trainings designed to increase early childhood educators and home visitation providers knowledge of the signs of child development, and to promote developmental screening and parent-engaged developmental monitoring. 2. To develop and maintain a train the trainer consultation model for large systems providers to increase understanding of the signs of child development, and to promote developmental screening and parent-engaged developmental monitoring in their agencies Implementation Targeted at training providers who see children at a young age for different purposes to determine appropriate development and potential developmental delay to alert families to request screening

52 Successes hour trainings delivered to early childhood educators in both English and Spanish New partnership with Child Parent Centers Head Start Provider to provide trainings Bilingual state training team is trained to fidelity Barriers Funding cuts reduced the number of DES providers able to be trained Requires time commitment from agencies The focus is currently on developmental screening but should also include parent-engaged developmental monitoring

53 Objectives For parents to understand the importance of early screening For parents to understand the developmental milestones and have realistic expectations for what their child can do at various ages To identify children who have need for further evaluation well before they enroll Implementation Training child care centers to screen children on intake at the beginning of the school year and then 6 months later as a check to make sure the child is staying on track or progressing Home visits with individuals that have either been referred Outreach events including screening at story times at the libraries, health fairs, community events, etc. Contracted to do Child Find events for the school district for children older than 2 years, 9 months but not yet 5 to identify children who need early intervention via the school district. Collaboration with pediatrician offices to do screenings on site Online hub parents are able to go online and screen their child questions on the spot. Results are discussed with parents by trained staff

54 Successes Pediatrician collaboration has only been happening for 6 months and is very well received Smaller pediatric practices without staff capacity to screen have benefitted the most The partnership with the libraries to do the story time events has yielded a lot of screenings and appointments for screenings. We were invited to join the Best for Babies Court Team this year this group works with children that are removed from homes through rapid response and are now part of the court system. They have intake people who do some screening, but there s no tracking of this yet. We are hoping to be allowed in the future to conduct our screenings for this population. Roadblocks Parental perceptions that we are looking for something wrong with their child rather than parents doing developmental monitoring and advocating proactively if they sense a delay Conducting the ASQ takes about 30 45m to get through

55 Objectives Provide technical assistance and training to offices seeing pediatric patients to systematically implement developmental screening at the AAP recommend well-child visits Periodic assessments of successful implementation Guaranteed high priority for practice patient referrals for developmental evaluation with corresponding screening documentation and physician impression Implementation One-on-One Technical Assistance with pediatric practice administrators Train-the-Trainer seminar and toolkit for pediatric practice to implement transition process independently Team-based consultation and training to recommend and oversee implementation of screening into practice

56 Successes Practices trained in 7 counties 2 practices requested training on tools but performed implementation independently 3 practices received full consultation and technical assistance 3 practices attended the train-the-trainer seminar Roadblocks Success is heavily dependent on a physician champion at the practice demanding systematic implementation of screening practice Staff and pediatricians in practices without a physician champion are extremely resistant to change in practice operation Practices believe in screening in theory but are hesitant to change their practice

57 Step 1 Discuss the pros and cons of your screening tool as a group and be prepared to present the information. Pros and cons to consider: Age range Time to complete Time to score Cost Complexity (who can administer and score) Usability (ease in accurate execution) Need for follow-up or ability for follow-up Step 2 You have been provided four screening scenarios. Considering the pros and cons your group has developed in the previous assignment, determine: which of these scenarios would be appropriate or inappropriate for successful use of your tool Why would it be appropriate/inappropriate Be prepared to present and discuss the information

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59 Perform Surveillance at all visits Perform Screening at specified visits Review screening results and discuss with family Address issues related to screening Know resources/where to refer Follow up/ensure follow through Use the most current version of the tools

60 Decide on appropriate screening tools for your setting Obtain all appropriate materials Train staff Implement process for screening Refer when screening identifies concerns Review/update process as needed Keep up to date on available resources

61 Ages and Stages M-CHAT-R/F PEDS Tool CDC Learn the Signs. Act Early. AAP Bright Futures Zero to Three American Academy of Pediatrics Developmental Screening Recommendations Sections/Council-on-Children-with-Disabilities/Pages/Description-and- Policy.aspx