Identifying and Addressing
Barriers to Accessing Early
Intervention Services
An Assuring Better Child Health and Development (ABCD)
Alumni Webinar
Supported 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 Philadelphia
David Kelley, MD, MPA, Chief Medical Officer, Pennsylvania Department of Public Welfare,
Office of Medical Assistance Programs
1
Overview
• 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)
2
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
3
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.
4
Path to EI Evaluation from
Pediatrician’s Office
Health care
provider
identifies
developmental
concern at well
child visit
Provider
conveys
concern
to parent
Health
care
provider
refers
patient to
EI
Option 1Physician
faxes
Evaluation
Contact
with EI
intake
staff
referral
form
Meeting
with service
coordinator
appointment
arranged
Multidisciplinary
evaluation
Option 2Physician
gives
parent EI
phone
number
Parent agrees
to call EI
Parent makes phone call
5
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
7
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)
8
Parent Participant Characteristics
Evaluated by EI (n=22) Not Evaluated by EI (n=22)
Parent Age Years
Parent Race
African American
Caucasian
Asian
Other
Ethnicity
Latino
Non- Latino
Parent Education
Some College or >
30.8 (21-45)
28.5 (22-36)
13 (59.1%)
6 (27.3%)
1 (4.6%)
2 (9.1%)
17 (77.3%)
2 (9.1%)
1 (4.6%)
2 (9.1%)
1 (4.6%)
21(95.4%)
3 (13.6%)
19 (86.4%)
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
10
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
12
Parents Want to Be Heard
• Expertise regarding child
• Deciding whether child needs EI
13
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
14
Many families referred to EI did not agree
that there was a developmental concern
Not Evaluated (n=22)
Denial or disagreement
Evaluated (n=22)
Denial or disagreement
18.2%
63.6%
15
Parental Wait and See
• Parents wanted to see if time or working
with child at home would help
16
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.”
Evaluated
17
Practical Barriers
• Time constraints
• Not understanding referral process
• Contact problems
18
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
19
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
20
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
21
Skepticism
• Did parents mistake EI for child protective
services and actively avoid evaluation?
22
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 Employee
23
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
Confusion about EI process
Possible
limited
literacy
(n=12)
6 (50 %)
Unlikely
limited
literacy
(n=28)
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%)
25
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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