“A journey of a thousand miles must begin with a single step.” Lao-tzu (604-531 B.C.) STEPPs.

“A journey of a thousand miles must begin with a single step.”

Lao-tzu(604-531

B.C.)

STEPPs

STEPPs

Developed by Illinois Chapter, American Academy of Pediatrics (ICAAP)

Investment of Illinois Council on Developmental Disabilities

Jointly sponsored by ICAAP and AAP

Approved by the Illinois Nurses Association

STEPPs

2.75 CME credits - AAP

3.6 contact hour credits - INA

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Complete evaluation form in handout booklet

• Part I: Overview

• Part II: Recommended Tools

• Part III: Referral Process

• Part IV: Implementation Strategies in the Pediatric Office

• Identify the purpose of developmental screening and early intervention

• Use tools to screen for developmental delays and autism

• Implement referral procedures for children who fail or pass but exhibit potential development concerns

• Employ parent/caregiver education materials

• Implement efficient office procedures for screening and referrals

STEPPs Learning Objectives

Needs Assessment

• Screening and surveillance practices

• Referral procedures

• Topics to cover

• Miscellaneous issues

Pediatrics Vol. 108 No. 1 July 2001

AAP Policy

AAP Committee on Children with Disabilities recommends routine standardized developmental and behavioral screening

Terminology

Surveillance

vs

Screening

Missed Opportunities

• Practices that do not regularly screen for developmental progress miss opportunities for early referral and treatment.

• Typical Story

Why Screen and Refer?

• Screening works!

• Helps young brains develop and advances physical and emotional development

• Improves patient/family satisfaction

• Federal/legal requirements

Detection RatesWithout Tools With Tools

• 20% of mental health problems identified

(Lavigne et al. Pediatr. 1993; 91:649-655)

• 30% of developmental disabilities identified

(Palfrey et al. JPEDS. 1994; 111:651-655)

• 80-90% with mental health problems identified

(Sturner, JDBP 1991; 12:51-64)

• 70-80% with developmental disabilities correctly identified

(Squires et al., JDBP 1996; 17:420-427)

Screening “Caveats”

• Detection is not perfect, even with good tools

• Clinical judgment still plays a role

• Risk of over-referrals

Early Brain Development

Cost Effective

• The practice of developmental screening and referrals is not a gimmick.

• The cost of treating developmental problems early is substantially lower than treating a patient who is diagnosed late.

Good Customer Service

• Parents want and expect support on child development– Commonwealth Fund– Healthy Steps

• Screening can encourage parent involvement and investment in child’s health care

Good Customer Service (cont’d)

“I just knew that my child was not normal. And she (the physician) kept telling me ‘you need to relax, you’re tired…you’re stressed, you’re overreacting. Take his binky away, take the bottle away.’ I hear all of that and I just want to scream. None of this applies. He’s not normal.”

Good Customer Service (cont’d)

“I loved her!”

“He is superfantastic,

I won’t see another doctor!”

“He actually listened to me!”

Parents who felt that physicians listened to and acted on their concerns were incredibly grateful.

Federal/Legal Requirements

• Americans with Disabilities Act (ADA) 1990

• Individuals with Disabilities Education Act (IDEA) 1975 (Amended in 1997)

• Healthy People 2000 & 2010 Goals

Current Practices in Developmental Screening

• 15-20% of pediatricians use screening tests routinely

• Developmental checklists

• Guidelines for Health Supervision (AAP)

• Bright Futures (MCHB/AAP)– trigger questions to promote discussion

between families and providers

Detection of Disabilities by Physicians

Legend

10th 50th 75th 100th

percentile25th

HyperactivityEmotional

Problems Other

DevelopmentalLearning Disability

Speech

Age of First Diagnosis (years)

0 2 4 6 8 10

Illinois Unmet Needs Project• 87% reported they provide developmental

monitoring (92% of pediatricians)• 64% are not using commercially

developed screening tools• 36% do….

– Denver and Denver II (most common)– Ages & Stages Questionnaire

• Screen for social-emotional/behavior problems less often

Final Report: May 2002 Developmental Screening by Primary Care Physicians

Illinois Unmet Needs Project

• Barriers to screening:– Lack of time– Lack of staff– Inadequate reimbursement– Lack of training– Lack of parent acceptance of delay

Final Report: May 2002 Developmental Screening by Primary Care Physicians

General Implementation Issues

• Identification of children with delay

• Pitfalls and challenges for/with:– Providers– Patients– Parents and caregivers

Take Careful STEPPs!

Take Careful STEPPs: What to Expect

• Developmental or Behavioral Disorders– Speech and language issues – Mental retardation – Learning problems– Attentional disorders– Other behavioral difficulties

• only ½ of children with these problems identified prior to school entrance

Take Careful STEPPs: What to Expect

http://www.pedstest.com/test/peds_intro.html

Take Careful STEPPs: Providers

• Lack of education on tools and their use• Expectations about children’s development• The “wait and see” approach• Continued reliance on observations• Failure to trust screening tests or results• Reliance on poor quality or homemade tools

Take Careful STEPPs: Children

• Development exists on a continuum• Children manifest skills variably,

inconsistently• Latent period• Developmental problems increase with age

– 2-3% of 0-18 month olds– 10% of 24-72 month olds– 16% of 0-21 year olds

Take Careful STEPPs: Children (cont’d)

• Screen at all well child visits • Consider screening at some sick visits

Take Careful STEPPs: Parents/Caregivers

• Parents are reservoirs of rich information • Screening structures observations, reports,

and communication about child development• Screening becomes a teaching tool for

parents and health care professionals• Screening improves relationships• Parent involvement reduces cost

Take Careful STEPPs: Parents/Caregivers

• Parent recall is often inaccurate

• Parent reports rely on current descriptions of child’s behavior and skills

• Parents may face personal challenges

• Reliable under certain conditions, with well-developed tests

Take Careful STEPPs: Preparing

Parents/Caregivers• Explain tool and purpose to parents

• Discourage assumption of a “problem”– addressing behavioral and developmental

issues is an important part of your service

• Assess ability to complete tool properly– with assistance?– in office or at home?

Take Careful STEPPs: Communicating Results

• Focus on positives

• Practice your language“Learning too slowly”

“Delayed in some areas”

“Needs some extra attention and support”

Take Careful STEPPs: Communicating Results

• Stress the need for further evaluation and follow-up

• Offer parents activities they can do right away

• Help the parent to inform others

Take Careful STEPPs: Encouraging Next Steps

• Acknowledge parent’s fear• Avoid judging or scolding parents• Encourage communication, particularly

when recommendations are not followed

• Provide parent with information on the referral

• Set a follow-up appointment

Take Careful STEPPs: Encouraging Next Steps

• The importance of information to parents:

– Must explain situation to others

– Language barriers

– Logistics

• “Demystify” the process

Part I Summary

Developmental Screening is:

• Recommended by AAP

• Different than surveillance

• Beneficial to children and practices

• Underutilized in Illinois

• Challenging but rewarding to implement

STEPPs

• Features of developmental screening tests

• Parents’ Evaluation of Developmental Status – PEDS parent report tool

• Ages and Stages Questionnaire - ASQ• Checklist for Autism in Toddlers –

CHAT• Autism spectrum disorders

Screening Test Features

• Sensitivity

• Specificity

• Positive predictive value

• Validity

• Reliability

Screening Test Features

• Scoring

• Training

• Administration

• Used for children birth through 8 years old• Written at 5th-grade reading level • Available in English, Spanish, Vietnamese • Designed as parent report tool for waiting

room• Requires minimal time for parent to complete• Can be performed as interview, requiring 2-3

minutes to complete and score

1. general concerns

2. speech sounds3. comprehension4. use of hands

and fingers 5. use of arms and

legs

6. behavior7. interaction with

others8. independence9. preschool/school

skills10. other

Score & Interpretation Form

• Longitudinal Score– Tally parent’s concerns– Predictive concerns vs. non-predictive

concerns

• Interpretation Form– Clinical judgments

Interpretation Form• when and where to refer • when to screen further• when to offer developmental promotion and

recommendations • when to provide behavioral guidance• when to observe vigilantly • when reassurance and routine monitoring are

sufficient

Interpretation of scores– Path A-referral

– Path B-screen with secondary screen

– Path C-counsel

– Path D- foreign language barrier

– Path E-elicit concerns at next visit

Challenges in Interpreting Parent Concerns• consider language barriers• watch for concerns that fall in multiple

categories – he won’t do it for himself

• investigate tentative language• pursue previous concerns

Case Example

Ages & Stages™ Questionnaire• Parent report tool with exercises, 30-35 items• Covers 5 skill/developmental areas • Written at a 6th grade level • Available in Spanish, English, and French• Choices of responses (yes, sometimes, not yet)• Requires 15-20 minutes to complete, 5 minutes

to score• 19 color-coded age-appropriate questionnaires

and score sheets

Ages & Stages™ Questionnaire

Using the shapes below to look at, does your child copy at least three shapes onto a large piece of paper using a pencil or crayon, without tracing? Your child’s drawings should look similar to the design of the shapes below, but they may be different in size.

Yes Sometimes Not Yet


• Use ASQ Information Summary sheet to score and for child’s permanent record

• Ensure test is complete • Convert responses to point values: yes

(10), sometimes (5), not yet (0)• Add item scores by developmental area

and record totals• Use ratio scoring procedure for unfinished

sections


Refer or Follow-up


The specific answers to each item on the questionnaire can be recorded below on the summary chart.


Challenges• Difficult to complete

• Difficult to stock and maintain

Advantages• Minimal physician time

• Low cost, photocopying permitted

• Developmental suggestions included

• Age-appropriate sensitivity and specificity

• Secondary screen to PEDS


Case Example

Autism Spectrum Disorders

Autism Spectrum Disorders

• 1 in 500 children

• Age of diagnosis falling

• Parent concern ~18 months of age

• Early detection crucial

Autism Spectrum DisordersDistinguishing characteristics of children with autism at mental age of 12-24 months:

– Lack of joint attention– Lack of eye gaze to determine others’

intentions– Lack of proto-declarative pointing– Using another person’s body as a tool– Failure to “show objects” to adults– Lack of initiation– Lack of symbolic play

Autism ScreeningAbsolute Indications for Immediate Evaluation-

Refer to Early Intervention System

• 12 months: No babbling, pointing, or other gestures

• 16 months: No single words• 24 months: No 2-word, spontaneous

phrases (not echolalic)• Any age: Any loss of any language or

social skills

CHecklist for Autism in Toddlers (CHAT)

• Completed by parents in the waiting or exam room• Administered at 18 and 24 month visits• Requires 5 minutes for parent to answer 9

questions• Requires 1 minute for provider to incorporate 5

observations into physical and document• Identifies 2 key behaviors – joint attention and

pretend play

Scoring the CHAT

5 key items

• A5 (pretend play)

• A7 (protodeclarative pointing)*

• Bii (following a point)

• Biii (pretending)

• Biv (producing a point)** medium risk

CHAT Follow Up

• Passes– no further action – no guarantee child will not develop social-

communication problem – concerned parents should seek referral

• Fails– re-screen in one month– refer to specialist clinic for diagnostic evaluation after

second fail AND– Refer to Early Intervention System

M-CHAT

Modified Checklist for Autism in Toddlers• 18 –24 months • 23 questions, using original 9 from CHAT as basis • Scored in five minutes by a professional or

paraprofessional• Yes/No responses convert to Pass/Fail responses• A child fails the checklist when

– two or more critical items are failed OR– any three items are failed.

• Not all children who fail the checklist will meet the criteria for diagnosis on the autism spectrum

Part II Summary

STEPPs

• Referrals and referral resources

• Early Intervention System and Child and Family Connections offices

• Practical aspects of incorporating developmental screening

• Coding and reimbursement

Referral Overview

• Prevention Programs– at risk

• Early Intervention– birth to age 3– Suspected delay– qualifying condition

• Special Education – Age 3 to 21

Prevention Programs & Resources

• Early Head Start and Head Start – serves birth-3 and 3-5 year olds– comprehensive health and education services– low income families



• Healthy Families Illinois – serves birth-5, at risk for abuse and neglect– voluntary, home visitation program



• Healthy Families Illinois – serves birth-5, at risk for abuse and neglect– voluntary, home visitation program

• Child Care Resource and Referral– connect to child care services and subsidies– nurse consultants for health and safety issues

Prevention Programs & Resources (cont’d)

• All Our Kids: Birth to Three Networks– (312) 922-3863 extension 335

• Early Childhood Education Block Grant• Even Start • Family Case Management

Prevention Programs & Resources (cont’d)

• Parents Care and Share of Illinois• Parents Too Soon• WIC • Other resources at IDHS web site

(www.dhs.state.il.us)

Early Intervention

• Who you should be referring to EI

• When to refer - timeline for evaluation/services

• Where to refer

• What specific services the EI system provides

Early Intervention: Who

Children Aged 0-3 with a Developmental Delay• Cognitive abilities • Physical abilities - including vision and hearing• Language/speech/communication• Social-emotional abilities• Adaptive self-help skills

– At risk of substantial developmental delay

Early Intervention: Who

At risk for delay• Caregiver - diagnosed psychological disorder or

developmental disabilityOr when Three or More Risk Factors are Present• Caregiver - alcohol or substance abuser• Caregiver - less than 15 years old• Caregiver - 10th grade education level • Caregiver - chronic illness• Child - homeless• Mother - abused alcohol/substances during pregnancy • Child has not been removed from abusive circumstances

Illinois Administrative Code Ch IV, § 500.50 Subchapter e

0-3: Early Intervention- Where

Child and Family Connections (CFCs)• 25 sites in Illinois• Functions:

– assist in screening/evaluation – determine eligibility– assess needs– plan for services– identify providers

Call 800-323-4769 for nearest CFC

0-3: Early Intervention- What

• Occupational therapy• Physical therapy• Speech/language

therapy• Family training,

counseling, support• Service coordination• Audiology• Vision services

• Nursing• Nutrition• Psychological services • Social Services• Developmental therapy• Transportation• Medical diagnostic

services

• Autism• Deaf-Blindness• Deafness• Emotional

Disturbance• Hearing Impairment• Mental Retardation• Multiple Disabilities• Orthopedic

Impairment

• Other Health Impairment

• Specific Learning Disability

• Speech/Language Impairment

• Traumatic Brain Injury

• Visual Impairment

3-5: Special Education

3-5: Special Education- Referral Process

• Designate steps for making a referral • Designate person(s) to whom a referral

may be made• Identify information to be provided • Provide assistance necessary to meet

requirements• Identify process for providing parents

with notice of their rights

Early Intervention: When

2 Working

Days

45 Days

For EI

Identification

Referral for Evaluation and Assessment

(service coordinator assigned)

Evaluation/Assessment

Eligibility Determined

IFSP Developed

IEP Developed

60 Days

For Spec Ed

QUESTIONS:

• Which tools at what intervals?

• How do you make time for screening?

• Who administers the screening, scores the tests, and communicates results?

• Who else may be screening the children in your practice?

Incorporating Screening into Practice

ANSWER:

• The Team Approach– Solves problems– Generates new ideas– Encourages participation– Requires training

Incorporating Screening into Practice

A Leader!

Scheduling Screening Tools

1 month

Edinburgh

2 month

Edinburgh

4 Month

ASQ

6 Month

PEDS

9 Month

IDI

12 Month

ASQ

15 Month

ASQ

18 Month

CHAT or

M-CHAT

24 Month

CHAT or

M-CHAT

36 Month

PEDS

48 Month

ASQ

60 Month

ASQ

Screening Administration

Tools can be:• Distributed at well child visits to be

completed and brought back • Mailed immediately prior to well child

visits• Completed in waiting or exam rooms • Completed by phone interview prior to

the visit

Staff Roles

Professionals • establish the system• choose the tools• train scorers• provide feedback to

parents• advise parents on

development and behavior

Paraprofessionals• implement the system • score questionnaires• provide routine

feedback • distribute patient

education• maintain and update

referral lists

Staff Roles (cont’d)

• Secretarial staff: copy or order tools, maintain supply

• Medical records staff: stuff charts

• Receptionists: explain tool, offer assistance

Staff Roles (cont’d)

• Medical Assistants: score questionnaire• Registered Nurses: score questionnaire,

discuss results, offer referral information• Physicians, NPs, PAs: review scored

tools, discuss results, administer secondary screenings, make referrals

The Happy Employee

Problem Solving Activity

Screening Implementation Worksheet

Maximizing Reimbursement

• Medicaid/KidCare (IDPA) coverage• Private insurers• Coding

ICAAP assistance: Kathryn Hawley [email protected]

“A journey of a thousand miles must begin with a single step.”

Lao-tzu(604-531

B.C.)

STEPPs

The End

“A journey of a thousand miles must begin with a single step.” Lao-tzu (604-531 B.C.) STEPPs.

Documents

Transcript of “A journey of a thousand miles must begin with a single step.” Lao-tzu (604-531 B.C.) STEPPs.