CHLA Provider Training CENTERS FOR DISEASE CONTROL AND PREVENTION’S “Learn the Signs. Act Early.” CHLA Provider Training Fran Goldfarb, Danny Azucar, Bozena Barton, and Rachel Marshall February 16, 2015 Danny

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Presentation Objectives Discuss the “Learn the Signs. Act Early.” campaign and materials Review the AAP Guidelines and California screening statistics. Identify barriers and solutions to providing anticipatory guidance Review local resources for early intervention. Danny

LTSAE: Background A CDC Campaign Development Transtheoretical Model Marketing Mix (4 P’s) Target Populations Parents Health Professionals Early Educators Danny The CDC reports that 17% of children under the age of 18 in the USA will have a developmental disability. These disorders/disabilities can be diagnosed as early as 18 months of age and will continue through the persons lifetime. In 2004 the CDC launched a research based campaign, LTSAE, aimed at increasing action amongst parents, healthcare professionals and early child educators. CDC used the Trans-Theoretical Model in guiding the development of this campaign, as well as social marketing principles to segment the target audience into three.

Let’s talk about Your essential, irreplaceable role in developmental monitoring and early identification FREE resources to make discussing screening and development with parents easier Danny I’ll discuss the importance of your role in developmental monitoring and screening and why early identification of developmental delay is so important, I’ll introduce resources that will make talking with parents about typical development and developmental concerns an easy part of every well-child visit.

AAP Developmental Surveillance Guidelines Surveillance at every Well Child visit should include: asking about parents' concerns obtaining a developmental history making observations of the child identifying risk and protective factors documenting the findings The AAP recommends developmental surveillance --the process of recognizing children who might be at risk for developmental delays— in addition to using standardized tools to administer a developmental screening at Every Well child visit Set the foundation for parental involvement and education in the process of tracking developmental milestones

AAP Developmental Screening Guidelines The AAP recommends standardized developmental screening at well-child visits All children screened to assess their general development at 9,18 & 24 or 30 months All children screened for ASD at 18 & 24 months 9-Month-Old Child 18-Month-Old Child Take home message is that you don’t have to be concerned in order to screen- it should be routine part of every well-child visit ALL children should receive thorough developmental screening- not just kids at risk. Parents appreciate the screening process and being a participant in that process- the comfort is provides when their child is developing as expected or the affirmation it provides when they have concerns regarding development 24-Month-Old Child

Screening Statistics 1 in 6 children has a developmental disability 12-16% U.S. children have a developmental or behavioral disorder 1 Prompt identification can spur specific and appropriate therapeutic early interventions2 Fewer than 30% are identified by clinician judgment alone before entering school3 Developmental monitoring and routine screening help you identify delays as early as possible, so you can refer the child to BOTH a specialist who can further evaluate the child and explore potential diagnoses AND the early intervention or special education programs that can help a child reach his or her full potential. AAP Policy Statement, Pediatrics 2001 AAPA Policy Statement, Pediatrics 2006 Sand, et al. Pediatricians’ reported practices regarding pediatric screening. Do guidelines work? Pediatrics 2005

Barriers to Screening What are YOUR barriers? Bozena

Reported Barriers to Conducting Standardized Developmental Screening for Children 0-3 Years of Age Proportion of Pediatricians Reporting as Barrier to Screening, Time limitations in current practice 89% Lack of medical office staff to perform screening 49% Inadequate barriers (ie, physician or staff members cannot speak language of family) 46% Lack of confidence in ability to screen 19% Lack of treatment options for positive screening results 10% Lack of knowledge regarding referral options for positive screening results 9% Survey This data came from a research article from Pediatrics that surveyed health care practitioners to identify their barriers to screening— Responses came primarily from pediatricians Only 23% reported that they used a standardized screening instrument and as we saw from the earlier slide- fewer than 30% of children are id’d by clinician judgment alone before entering school Only top 2 Acknowledge that some items were not reported in survey as potential barriers- but were mentioned by group as concerns– we can address these later! Lack of insurance reimbursement – by making parents more involved in screening, and coming to well child visits with materials in hand it will take far less time to perform screenings and result in shorter visits Sand, et al. Pediatricians’ reported practices regarding pediatric screening. Do guidelines work? Pediatrics 2005

LTSAE Materials Developed by CDC, in conjunction with the AAP Objective, research- based Make visits more productive and more time-efficient Empower parents to become better partners in tracking development Rachel Meant to be a 2 pronged approach: 1. Anticipatory guidance/discussion and 2. Standardized screening at prescribed intervals. Developed by CDC and AAP, based on evidence of development. not a replacement for the standardized developmental screening you conduct Parents can base their observations on objective, research-based, age-appropriate developmental milestones. Realistic expectations about their child’s development Providers spend less time calming unnecessarily worried parents More time discussing real areas of concern If you have other materials, use these to fill gaps Use parent-friendly language, sensitive to education and literacy Have been tested and are well-received by families

LTSAE Materials Completely free Can be ordered online and mailed to your office for free. Some resources are printable online. Rachel

LTSAE Materials Designed for use by: Parents Books, growth chart Professionals How to discuss milestones Tip sheets Parents and Professionals Together Tracking tools Rachel (Pass out the LTSAE Materials during presentation) Celebrate typical development Each material targeted for various use Some promote campaign- tracking more than just development Some give families tools to track their child’s development Others audience professional, such as tips on how to talk to families

Campaign Posters Appropriate for: Waiting room Office wall “It’s time to change how we view a child’s growth.” Rachel campaign focus If you need some art in your waiting room

Milestones Brochure Waiting room Select milestones at a glance for ages 6 months to 4 years Rachel Get them thinking about milestones before they even walk into the visit. Audience: parents introduction to monitoring developmental milestones Key milestones What to do if concerned Inviting design, low literacy friendly parent friendly Parents as a partner Prepare them for routine screening Good brochure for waiting area and/or exam room English and Spanish available Order or download, print, and customize

Milestone Moments Booklet Rachel All 10 checklists

Milestone Moments Booklet Free and customizable Can be ordered on the website Helps parents prepare for well- child visits Milestone checklists 2 months – 5 years Four domains of development Developmental “red flags” Activities to foster development Rachel comprehensive, full milestone checklists for all domains of early development 2 months through 5 years matches the recommended ages for well-child visits Age-appropriate activities that a parent can use to engage child Place for parents to record questions or concerns Free in limited quantities - go to website Spanish Customizable- add your practice logo, contact information for local early intervention resources Print as many as you want Audience: every newborn visit all new families in your practice Encourage parents to bring it to each well-child visit.

Milestone Checklists Free and printable onlinehttp://www.cdc.gov/ncbddd/acte arly/downloads.html#checklists Well Child Visits A checklist to be given at each corresponding well child visit 2 months through 5 years Same information as milestone booklets Parent tested Spanish translation on reverse Rachel Same info as moments booklets, but just for each well child visit age. Go to website to show how to print Sample checklist Four domains of development Red flags 2 months through 5 years Give at every corresponding well-child visit Printed from CDC’s “Learn the Signs. Act Early.” website Parent tested

Story Time Celebrates typical development Age-appropriate activities Currently developing books for 1 and 2 year olds Rachel

Growth Charts fg Select milestones at a glance for ages 1 month to 5 years English and Spanish on reverse Rachel

Inglés y Español Additional languages: Arabic Korean Portuguese Somali *some materials Rachel all materials in Spanish and English some in other languages CDC welcomes additional translation

“Failed” Screening What if a Child Fails the Developmental Screening?

Explaining the “Failed” Screening Prepare Parents Normalize the discussion about developmental milestones Empower parents as participants in the screening process Bozena By normalizing the discussion it will better prepare parents to observe their own child’s development in daily settings and will make the process much less frightening and out of the blue a. Talk about milestones at each visit, starting at 2 months Parents as participants in developmental milestone tracking b. They can become accustomed to track milestones in daily settings from birth c. They become more aware of and educated about typical patterns of growth and development

Explaining the “Failed” Screening Remember Purpose of Screening Use language consistent with the child’s need for more comprehensive assessment Bozena Purpose of screening a. Screening does not diagnose developmental disorders b. Life course model: use screening as a Protective Factor to enhance Functional capacity over the child’s life course Use language consistent with child’s needs c. Phrases like the following can be used: “may be delayed,” “ this suggests…,” “may be having difficulties compared to other children his age,” “may be behind other kids,” “seems to be learning more slowly,” “could be having difficulty learning.”

Explaining the “Failed” Screening Provide referral telephone numbers and descriptions of services Identify social worker to help families who are likely to have multiple barriers to following through with recommendations Bozena Referrals: a. Descriptions of programs enable families to visualize what participation will look like and increase the chance they actually will participate Social Worker for families in need: a.. Bring in the social workers from the unit for families who have a lot on their plate- they can offer recommendations b. For example, single parents with low incomes and multiple life stressors

Explaining the “Failed” Screening fg Follow carefully those children who fail screens but do not qualify for services Lets celebrate when children pass screening & offer reassurance that learning and development appear to be coming along well Bozena a. Referrals to services for children at risk, such as Head Start, quality child care, after-school tutoring, and summer programs AAP Section on Developmental and Behavioral Pediatrics Newsletter, Fall 2007

Early Intervention Resources fg Regional Center Services – Early Start 7 Regional Centers in LA County 21 Regional Centers in California Children 0-3 IDEA Part C Evaluation Intervention Family-centered, Natural environments No referral necessary No existing diagnosis necessary Rachel The logical next step if a child does not pass a screening . Always better to make the referral than not. If in doubt, make the referral. , EI eligibility changing (for the better!) Do you know the regional centers in this area? Lanterman Westside South Los Angeles East LA Harbor North Los Angeles County San Gabriel/ Pomona

Family Resource Centers Early Start Family Resource Centers Within and outside regional centers http://www.frcnca.org/frcnca-directory/region-7/ CHLA Family Resource Center http://www.chla.org/site/c.ipINKTOAJsG/b.76790 93/k.98C2/Family_Resource_Center__Patient_H ealth_Education__Program_Support.htm#.VNpA XV47ZhI Rachel Resource Centers Provide handout regarding Early Start family Resource Centers in LA Families who have been turned away ASD benefits, such as behavioral therapy Physical disabilities: CCS Children over 3

Additional Resources Medical Insurance Benefits California Children’s Services (CCS) Children older than 3 Special Education IDEA Part B Regional Center Eligibility: ASD, CP, ID, or Epilepsy Rachel Resource Centers Families who have been turned away ASD benefits, such as behavioral therapy Physical disabilities: CCS Children over 3

Free Continuing Education Free online courses eligible for CME, CNE and CEU credits MOC (Part 2) Approved Identifying Diagnosing Managing In-Class Curriculum Teaching Guide Video Library Rachel Free!! Credited 20 points toward Maintenance of Certification Part 2 through the American Board of Pediatrics. CE Credits Maintenance of Certification Part 2 requirements. LTSAE: broad context, focus on typical development All health care providers: ASD due to prevalence (1 in 88) If you don’t already have patients with ASD, chances are you will in the future.

Autism Case Training Early Warning Signs Screening Communicating Concerns Making an ASD Diagnosis Early Intervention and Education Treatments for ASD ASD-Specific Anticipatory Guidance Rachel Videos of Children Topics: Early Warning Signs, Screening, Communicating Concerns, Making an ASD Diagnosis, Early Intervention and Education, Treatments for ASD, ASD-Specific Anticipatory Guidance Downloadable curriculum available at no charge  Handouts powerPoint slides video library

LTSAE Website http://www.cd c.gov/ncbddd /actearly/inde x.html Show checklists, Autism Case based training

Discussion “It is time to change the way we view a child’s growth” “A 4 year old with Autism, was once a 3 year old with autism, was once a…” “Everyday you see them reach milestones, this CD will you spot a few more” Danny Past research on LTSAE indicated that fear-based messages that focused on the severity of autism and the need to identify the signs of autism early quickly turned parents away.11 Instead, messages that focused on the natural and strong desire to monitor a child’s physical growth and development positively engaged parents and provided an opportunity to educate them on the full range of developmental milestones.

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