Identifying and Addressing Barriers to Accessing Early

Intervention ServicesAn Assuring Better Child Health and Development (ABCD)

Alumni WebinarSupported by The Commonwealth Fund

May 4, 2012

Manny Jimenez, MD, Robert Wood Johnson Foundation Clinical Scholar, The University of Pennsylvania, and Fellow, The Children’s Hospital of Philadelphia

Marsha Gerdes, PhD, Senior Psychologist, PolicyLab, The Children’s Hospital of PhiladelphiaDavid Kelley, MD, MPA, Chief Medical Officer, Pennsylvania Department of Public Welfare,

Office of Medical Assistance Programs

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• Barriers to Early Intervention Services (Manny Jimenez)

• Understanding Barriers to Services (Marsha Gerdes)

• CHIPRA Quality Demonstration Grant and Pennsylvania’s Early Intervention Strategies (David Kelley)

• Current Successes and Challenges (Marsha Gerdes)

• Facilitated Discussion (Jill Rosenthal)

Overview

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Disclosures

• Manny Jimenez’s work was supported by – The Robert Wood Johnson Foundation Clinical

Scholars Program at the University of Pennsylvania – A 2011 Academic Pediatric Association (APA)

Young Investigator Award (YIA) for Child Development and Preventive Care Services for Children, Ages 0-5, supported by The Commonwealth Fund

• No conflicts of interest

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Problem

• Part C of the Individuals with Disabilities Education Act mandates early intervention (EI) for infants and toddlers with developmental delay

• AAP advocates for early identification• 13% of infants and toddlers have developmental

delays that qualify for EI services.• 90 % of eligible children do not receive EI services.

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Health care provider

identifies developmental concern at well

child visit

Health care

provider refers

patient to EI

Provider conveys

concern to parent

Option 1-Physician faxes

referral form

Contact with EI intake staff

Option 2-Physician gives parent EI phone number

Parent agrees to call EI

Parent makes phone call

Evaluation

appointment arranged

Multi- disciplinary evaluation

Path to EI Evaluation from Pediatrician’s Office

Meeting with service coordinator

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TEDS Study

• Translating Evidence-Based Developmental Screening (TEDS) into Pediatric Primary Care– December 2008 through June 2010 – CDC-funded randomized controlled trial of

developmental screening in four urban, primary care practices

– 2092 children age 0-36 mos– 332 children referred to EI– 162 Not Evaluated by Early Intervention

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Goal

To understand why infants and toddlers referred to EI are not always evaluated from the perspective of parents and EI employees

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Data

• Interviews with– 22 Parents of infants and toddlers referred to EI

and not evaluated– 22 Parents of infants and toddlers referred to EI

and who were evaluated– 14 EI Employees (Intake staff and service

coordinators)

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Parent Participant CharacteristicsEvaluated by EI (n=22) Not Evaluated by EI (n=22)

Parent Age Years 30.8 (21-45) 28.5 (22-36) Parent Race African American 13 (59.1%) 17 (77.3%) Caucasian 6 (27.3%) 2 (9.1%) Asian 1 (4.6%) 1 (4.6%) Other 2 (9.1%) 2 (9.1%)Ethnicity Latino 1 (4.6%) 3 (13.6%) Non- Latino 21(95.4%) 19 (86.4%)Parent Education Some College or > 14 (63.6%) 12 (54.5%)

Employment Unemployed 15 (68.2%) 13 (59.1%) Income <33,000 10 (45.5%) 13 (59.1%)

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Themes

• Miscommunication• Parents Want to be Heard• Parental Wait and See• Practical barriers • Skepticism

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Miscommunication

• Hearing reassurance rather than action is necessary

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Communication Problems

"I was voicing my concerns...she agreed with them but didn’t seem overly concerned, so that kind of brought me down a few notches and so my urgency was already dropping at that point. So I didn’t realize that maybe that [EI referral] was something I should definitely do.“

Not evaluated

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Parents Want to Be Heard

• Expertise regarding child• Deciding whether child needs EI

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Parents as Experts and Decision-Makers

“I spend all my time with her, so I know her habits and I know her speech.”

Not evaluated“I thought it was my choice, it was my

responsibility… to contact [EI] if I felt that he needed services or not.”

Evaluated

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Many families referred to EI did not agree that there was a developmental concern

63.6%

Not Evaluated (n=22)

Denial or disagreement18.2%

Evaluated (n=22)

Denial or disagreement

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Parental Wait and See

• Parents wanted to see if time or working with child at home would help

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Waiting for Developmental Delay to Resolve or Working with Child

“Only if he[’s] getting worse, or he[’s] not improving at all. I will try to talk to somebody to get the situation handled.”

Not evaluated“We were like, no, we’ll just work with him, at first.

So we tried to work with him. Then at the next appointment he didn’t make too much progress and they were like, yeah we recommend [EI]. So we called the number.”

Evaluated17

Practical Barriers

• Time constraints• Not understanding referral process

• Contact problems

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Time Constraints

“I did put it in my pile of to-dos, which is a mountain. And it got lost in the mountain.”

Not Evaluated “Maybe the child has a lot of appointments. Maybe the

child is medically fragile. Maybe mom is overwhelmed. And maybe there’s so many appointments she don’t know which appointment is which. That’s another thing we hear. So sometimes we – we hear that, that’s major. When the child has so many appointments, they don’t understand where we fit and how important [EI] is for their child’s services.” –EI employee

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Not Understanding the Referral Process

"I didn’t have a number to call. I wasn’t really sure why the process was going on and I was also in school. So I just focused on school and didn’t really pay it any mind"- Not evaluated

“I feel like I have such short windows of time to spend with my kids that any additional appointments, testing, takes time away. However, if it’s something that’s going to have a remarkable effect or improvement than I would absolutely do it. But time is one, and two just not knowing who to call, where to go.” –Not evaluated

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Contact Problems

“I think she did give me [EI] number too before and I had misplaced it. It seem like every time I got [EI] number I end up misplacing it.”

Not evaluated“I did call them and like I said, I think I talked

with someone and I think they were supposed to call me back or send me some information or something, but I never heard anything.” – Not evaluated

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Skepticism

• Did parents mistake EI for child protective services and actively avoid evaluation?

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Child Protective Services

“I don’t know about the most difficult. But definitely the most frequent is us being confused with DHS. It doesn’t matter how many times you say it, we’re not DHS.”

EI Employee

“Some people they already have other issues going on. They might feel insecure about their home environment. It might not look the way other people think it should look. That’s their standard of living. Because it’s in the home, it’s not like you coming to a location, they might feel insecure, like okay I know I’m not the best parent or they might judge me when they come in here, or they might take my kids.”

EI Employee23

Parental Health Literacy

Evaluated (n=20)

Not evaluated (n=20)

Possibly Limited 3 (13.6%) 9 (40.9%)

Unlikely Limited 17 (77.3%) 11 (50%)

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Differences by Health Literacy Level

Possible limited literacy (n=12)

Unlikely limited literacy (n=28)

Confusion about EI process 6 (50 %) 9 (32%)

Issues contacting EI 4 (33.3%) 3 (10.7%)

Physician does not explain EI 4 (33.3%) 5 (17.8%)

No established pediatrician 7 (58.3%) 8 (28.6%)

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Conclusions

• Communication between pediatricians and families often omitted– Straight talk about referral– Practical referral logistics– Listening to families' perception of their child's

development, – Addressing parent’s motivation to address concerns.

• Impact of parental health literacy on incomplete EI evaluation warrants further study

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