My View On Services - EHDI Annual Meeting

My View On Services
Karen Aguilar, MJ, Coalition Director
Reasons for the Survey
• Funders
• Data instead of anecdotal
• Use for programming going forward
• Reduce Lost to Follow-up
Thank You
Young, A.M., Gascon-Ramos, M., Campbell, M., and
Bamford, J. (2009) The Design and Validation of a
Parent-Report Questionnaire for Assessing the
Characteristics and Quality of Early Intervention Over
Time J. Deaf Stud. Deaf Educ. 14(4): 422-435.
The Revised Survey
•
City: _________ Zip code: __________
Year child was born: ________
•
Was your child born in Illinois (please circle): Yes No
•
Did your child pass newborn hearing screening: Yes No
•
At what age was your child identified with a hearing loss? Years: _____ Months: _____
•
Diagnostic Results: Unilateral (one ear) Bilateral (two ears)
•
Has your child been identified as having Auditory Neuropathy/Dys-synchrony: Yes No
•
Degree of Hearing Loss: Right Ear: Mild Moderate Moderate-Severe Severe Profound
•
Left Ear: Mild Moderate Moderate-Severe Severe Profound
•
Are you a: mother father grandparent guardian other ____________________________
The Revised Survey
•
Is your child now or previously enrolled in intervention services (early intervention
through the state or private)? Yes No
•
Did it begin by 6 months of age (please circle)? Yes
•
Does/Did you child have an IFSP (Individual Family Service Plan) through your local
Child and Family Connections (Illinois Early Intervention) office?
Yes No
•
Did your child receive services privately (through a private school or provider)?
Yes
No
•
At the time of this survey, what is your primary language used at home? English
Spanish
Polish
Sign Language
Other ___________
•
At the time of this survey, what is the primary communication mode used in your
home with your child with hearing loss:
Oral/Speech ASL
Signed English
Cued Speech Total Communication
No
The Revised Survey
• Please circle any of the evaluations that your child has received to
date:
vision
genetics
speech and language
occupational evaluation
physical evaluation
developmental evaluation
other:
• Please circle any therapies that your child has had to date:
speech and language
occupational evaluation
physical evaluation
developmental evaluation
other:
• Who first explained to you the different ways to communicate with
your child? Developmental Therapist
Developmental Therapist/Hearing
Service Coordinator
another parent
audiologist
ENT
Other Early Intervention provider: _______________
The Revised Survey
What challenges did you experience related to getting your child’s hearing
test completed after leaving the hospital (check all that apply)?
_____ My baby was not screened at the hospital
_____ Unsure of where to go after our baby failed the screening
_____ Screening test results were not shared with us
_____ Delay in appointment availability
_____ ABR test only available under sedation
_____ Missed appointments due to: _____________________________
_____ Transportation problems
_____ Unable to afford the test
_____ Our baby had other medical/health problems
_____ Our baby had middle ear fluid
_____ We live far from the testing clinic
_____ Repeated testing was needed
_____ Other, please specify: _____________________________________
The Revised Survey
When you first found out that your child had a hearing loss,
many concerns arose in the following weeks. Place an X
next to the top 3 concerns you experienced.
_____ Your child’s medical needs
_____ Your family’s finances
_____ Your child’s success in school
_____ Your child’s ability to make friends
_____ Your child’s ability to communicate with the family
_____ Who would pay for your child’s hearing aids
_____ Where your child would get speech and language
therapy
_____ Other, please specify: _______________________
•
If enrolled in the Guide By Your Side program, who is your Parent Guide?
_______________________________
•
Please indicate areas for which you would like additional information. You will be
asked in the final question to provide your contact information (if you wish to be
contacted):
___ To receive a free copy of the "Children and Hearing Loss."
___ To be matched with a Guide By Your Side Parent Guide.
___ To be contacted by Illinois Hands and Voices to receive information about parent activities.
___ To volunteer with parent organizations or at the state level with the IL EHDI program.
□ Please contact me with additional information and resources for my family.
Name: ______________________________________________________
Address: _____________________________________________________
City, State, Zip: _______________________________________________
Phone: (_____)____________ E-mail: ____________________________
Number of Parents Surveyed: 55
(not all parents answered all questions)
Location: Statewide Illinois
Parent Pool: CHOICES for Parents, GBYS Parent Guides,
Developmental Therapists/Hearing, IL Hands & Voices,
Parent Conferences
46 children born in Illinois
8 born in other states
1 born in China
Primary Language Used at Home:
English: 43
Spanish: 2
Sign Language: 3
Other: 7
Year Child Was Born
2011 (3)
2012 (1)
2010 (4)
1970s (2)
1990s ([VALUE])
2009 (7)
2007 (5)
2001-2005 (13)
2008 (5)
2006 (3)
Screening
Did your child pass newborn hearing screening?
Yes: 40%
No: 60%
Challenges experienced related to getting hearing
test completed after leaving the hospital
12
10
8
6
4
2
Other (please specify)
Repeated testing was needed
We live far from the testing clinic
Our baby had middle ear fluid
Our baby had other medical/health
problems
Unable to afford the test
Transportation problems
ABR test only available under sedation
Delay in appointment availability
Screening test results were not shared
with us
Unsure of where to go after our baby
failed the screening
Our baby was not screened at the hospital
0
Our baby
Unsure
wasofnot
where
screened
to
Screening
go after
at thetest
our
hospital
baby
results
Delay
failed
were
inthe
appointment
not
ABR
screening
shared
test only
with
availability
available
us Transportation
under sedation
Unable
Our
problems
baby
to afford
had other
the test
Our
medical/health
baby had
Wemiddle
live
problems
far ear
from
Repeated
fluid
the testing
testing
clinic
Other
was needed
(please specify)
Series2
Other: Ambiguous test results, machine wasn’t working, hearing was not checked, child was adopted, even
though child passed test was repeated due to family history of hearing loss, pediatrician tested child at 18
months, audiologist tested repeatedly.
Age of Identification
3-5 years (7)
6+ years (1)
0-6 months (22)
1-2 years (15)
7-12 months (5)
EI by 6 months?
Did intervention services begin by 6 months of age?
Yes: 57%
No: 43%
EI Services?
Is your child now or was s/he previously enrolled in intervention services
(Early Intervention through the state or private)?
Yes: 88%
No: 12%
Private Services?
Did your child receive services privately (through a private school or provider)?
Yes: 55%
No: 45%
Type of Hearing Loss
Please indicate the degree of hearing loss for you child by ear.
60
Mild
50
40
Moderate
30
Moderate
Severe
20
Severe
10
Profound
0
Right ear
Answer Options
Right ear
Left ear
Left ear
Mild
Moderate
8
8
10
8
Moderate
Severe
7
9
Severe
Profound
6
8
20
17
Response
Count
48
47
Unilateral (5)
Bilateral (43)
Is your child's hearing loss:
Unilateral (one ear)
Bilateral (two ears)
Communication at Home?
At the time of this survey, what is the primary communication mode used in your
home with your child with hearing loss:
90.0%
80.0%
70.0%
60.0%
50.0%
40.0%
30.0%
20.0%
10.0%
0.0%
Oral/Speech
ASL
Total
Communication
Signed English
Cued Speech
Oral/Speech (36); ASL (5); Signed English (7); Cued Speech (3);
Other (6) : TC, CASE, ASL Facial Expression, ASL & Contact Sign, 2 English
When parents first found out that their child had
hearing loss, the following concerns arose:
Other (4)
Medical Needs (23)
Where SLP (18)
How to pay for
hearing aids (11)
Family's finances
(10)
How child will
communicate with
family (28)
Child's success in
school (31)
Child's ability to
make friends (14)
Other: What do I need to do, child’s safety, find qualified unbiased professional, acceptance
Who first explained to you the different ways to
communicate with your child?
DT (3)
Other (11)
DT/H (12)
Other EI Provider (6)
Service Coodinator
(5)
ENT (2)
Another Parent (2)
Audiologist (9)
Other: Didn’t need it as I am Deaf, research on the internet, another child’s deaf parent,
GBYS Parent Guide, ISD Outreach, I did through my own research
What Professionals Do You Work With?
Do you and your child receive services from:
Answer Options
Yes
No
Response Count
Pediatrician
36
5
41
Developmental Therapist/Hearing
31
10
41
Deaf Mentor
9
28
37
Cochlear Implant Team Member
16
21
37
Answer Options
Yes
No
Response Count
Pediatrician
25
6
31
Developmental Therapist/Hearing
23
10
33
Deaf Mentor
11
24
35
Cochlear Implant Team Member
12
18
30
Were you offered this service?
How much did working with this
provider reduce your level of stress?
1 = Not at
all (no
impact on
stress)
2
3
4
Pediatrician
Developmental
Therapist/Hearing
10
6
5
5
5 = Very
Much
(Greatly
decreased
stress)
11
3
2
3
7
Deaf Mentor
Cochlear Implant Team
Member
0
1
0
1
2
0
Answer Options
N/A
Rating Response
Average Count
5
3.03
42
16
11
4.00
42
3
7
28
4.45
39
4
9
23
4.13
39
How much did working with this provider improve
your ability to communicate with your child?
Answer Options
Pediatrician
Developmental
Therapist/Hearing
Deaf Mentor
Cochlear Implant Team
Member
1 = Not at all
(no ability to
better
communicate)
2
3
4
16
4
4
3
5 = Very Much
(Greatly
improved
ability to
communicate
with your
child)
3
2
0
7
6
0
1
1
0
1
2
N/A
Rating Response
Average Count
10
2.10
40
13
13
4.00
41
3
5
27
4.20
37
3
7
23
4.23
36
How much did working with this provider increase
your comfort level with hearing loss?
Answer Options
Pediatrician
Developmental
Therapist/Hearing
Deaf Mentor
Cochlear Implant Team
Member
5 = Very
Much (much
more
N/A
comfortable
with hearing
loss
4
8
1 = Not at all
(not more
comfortable
with hearing
loss)
2
3
4
14
4
5
4
2
0
7
7
15
0
0
0
5
1
0
0
7
Rating Response
Average Count
2.35
39
11
4.06
42
5
28
4.50
38
8
23
4.31
39
How important are the following
for you now?
Answer Options
Information about available
services
Information about how to
communicate with my child who is
deaf/has hearing loss
Knowledge about how deaf
children grow up
Professionals help me to make my
needs known and to fight for
things necessary
Coordination of all of the services,
and professionals involved with my
child and family
Support to make decisions about
my child who is deaf/with hearing
loss and my family
Confidence building in parenting a
child who is deaf/with hearing loss
Contact with other parents of deaf
children/with hearing loss (parentto-parent support)
Not
important
Somewhat
important
Important
Very
important
Rating
Average
Response
Count
2
2
9
30
3.56
43
4
4
8
25
3.32
41
2
3
9
27
3.49
41
2
3
11
27
3.47
43
2
5
15
21
3.28
43
2
7
12
21
3.24
42
2
5
12
23
3.33
42
0
6
12
24
3.43
42
To what extent are professional services...
not at all 1 - - - -to a great extent 5
Answer Options
1
2
3
4
5
Trusting you as the expert.
Taking into account your family’s
culture and lifestyle when working
out support plans.
Providing an optimistic view of the
future.
2
3
14
7
15
Response
Count
41
4
4
9
10
14
41
1
4
10
6
20
41
How important is this for you now?
Answer Options
Trusting you as the expert.
Taking into account your family’s
culture and lifestyle when working out
support plans.
Providing an optimistic view of the
future.
4
Somewhat
Important
6
5
6
13
17
41
3
2
7
29
41
Not Important
11
Very
Important
20
Response
Count
41
Important
Next Steps
• Encourage Spanish surveys to be completed analyze and compare results
• What do you want to know?
Mission
• CHOICES for Parents is a statewide coalition of
parents and professionals ensuring that children
with identified hearing loss and their families
receive the necessary resources, advocacy,
information, services and support.
• CHOICES for Parents is committed to providing
unbiased information.
• Created in 2001 to identify cracks in the system
from identification through transition
• Case manage families through the process
• 6 original coalition members
• Fiscal Agent is non-profit organization
Coalition Members
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Alexander Graham Bell Montessori School & AEHI
Ann & Robert H. Lurie Children’s Hospital of Chicago
Catholic Office of the Deaf
Chicago Hearing Society a division of Anixter Center
Child’s Voice
Cochlear Americas
Deaf Access Program Mt. Sinai
Foundation for Hearing and Speech Rehabilitation
Gallaudet University Regional Center
Hearing and Vision Early Intervention Outreach
HITEC
Illinois Association of the Deaf
Illinois Deaf Latino Association
Illinois Early Hearing Detection & Intervention Program
Illinois Hands & Voices
Illinois Service Resource Center
International Center on Deafness and the Arts
Northwestern Department of Communication Disorders and Sciences
Rush University Department of Communication Disorders and Sciences
Sertoma Speech and Hearing Center
University of Chicago Pediatric Hearing Loss Program
University of Illinois Hospital and Health Sciences System
Informational Material
• Created “Children and Hearing Loss” binder
(in English and Spanish) free to parents
• Technology for Your Child informational
material
• What Our Pediatrician Should Know
informational material
• Web site of information and resources (in
English and Spanish)
READ Program
• Distribute books from the American Library
Association to encourage reading to children
who are deaf or hard of hearing
IDLA
• Co-sponsor of the Illinois Deaf Latino
Association Deaf Awareness/Parent Events
• Sign Language classes free to parents
taught in spoken Spanish
EHDI Day
• Honor those who have gone above and beyond
• Proclaimed by the Governor
• March 14, 2014
“Partner Agency”
• Signed contract with Hands & Voices for bring
Guide By Your Side to Illinois (house the GBYS
Program instead of H&V).
• Fiscal agent is Anixter Center (holds the
501(c)(3) for both agencies.
• Anixter mission - to enhance the lives of
individuals living with or at risk of disabilities to
live, learn, work and play in the community
Contact Information
Karen Aguilar, MJ, Coalition Director
CHOICES for Parents
PO Box 806045
Chicago, IL 60680-4121
Phone: 866.733.8729
Mobile: 847.877.3772
[email protected]