Transcript THE IMPLEMENTATION AND IMPACT Parent Links Supporting Parents of Newly Diagnosed

A program of the California Coalition of Agencies
Serving the Deaf and Hard of Hearing, Inc.
Supporting Parents of Newly Diagnosed
Deaf and Hard of Hearing Infants:
THE IMPLEMENTATION AND IMPACT
OF Parent Links
Generously Funded by The California Endowment
Providing Families With
Infants (0-3 Years) who
have a hearing Loss with
Links To:
*Services
*Programs
*Information
*Parent-To-Parent
Support
Parents are the single most
critical factor in the education
and future of their children.
Connecting with Families
“The feeling of connection may be
one of life's sweetest momentswhen someone understands you,
really understands you, because
they have been there”.
Parent Link Consultants
Personalities
 Listen
and Care
 Share and Seek
Information
 Collaborate and
ARE Professionals
Tools for Success
 Active Listening, Grief and Communication
Skills
 Indicators of Cultural Competences
 Principles of Family/Professional
Collaboration
 Part C of IDEA and Calif. Early Start
 IFSP Process Principles
 NHSP
 Resource Development
 Documentation and Record Keeping
ULTIMATE GOALS
PARENT LINKS ACTIVITES
1. Intake
2. Essential Links
3. Intensive Case
Management
4. Medical Home
5. Referral Other
Agency
6. Early Intervention
Services
7. Research
8. Find or Develop
parent groups
9. Presentations/
Trainings and
Workshops to Parents
10. Collaboration with EI
and Medical Home
SHORT-TERM
PARENTAL
OUTCOMES
1. Increased
Knowledge
2. Decreased
Isolation
3. Increased
Services
4. Increased
Participation
1. Improved Health
Conditions
2. Language Acquisition
3. Improve life/Academic
Outcomes
4. Improved Interface
With The World
5. Increased Coping
LONG-TERM FAMILY
OUTCOMES
6. Increased
Confidence
1. Improved Family
Dynamics
7. Increased
Bonding
2. Improved Family
Advocacy
8. Improved
Parental
Negotiation Skills
3. Increased
Communication Skills
with Child
Parent Links Program Objectives
 Identify 500 resources and contacts
including medical, educational,
social, deaf related services and
devices, support and other
information for families for the 58
counties of California.
Parent Links Program Objectives

Provide Family Culture presentations or
trainings to providers within the Early Start
system.
Parent Links Program Objectives

Attend conferences, meetings and trainings in
order to promote the program, provide
educational resources to parents and providers,
and represent the experience and needs of
families with deaf and hard of hearing infants
and toddlers.
Parent Links Program Objectives
 Provide intensive case management
(ICM) to families with infants (0-3years).
Parent Links Program Objectives

Ensure that the case managed families will be
connected to a medical home and/or be
enrolled in educational services.
Parent Links Program Objectives
 Develop a train the trainer curriculum
whereby the PARENT LINKS
Consultant will train Key Parent Links
Volunteers.
Parent Links Program Objectives

Develop 50 fact sheets in English and
Spanish on a variety of topics related to
hearing loss and educational issues of
interest to families and providers.
Parent Links Program Objectives

Conduct regional meetings or
events for families throughout
the State.
Parent Links Program Objectives
 The Parent Links program will be
recognized by local, state and federal
agencies as the representative of families
with infants and toddlers who are deaf or
hard-of-hearing.
 Parent Links expertise will be utilized
during consideration of implementation,
enhancement or change of program and
services impacting on families in the Early
Hearing Detection and intervention system.
Evaluation Purpose
 Explore impact of novel parent support
program
 Improve focus and delivery of Parent
Links
Evaluation Methods
 Unstructured qualitative in-person staff
interviews
 Semi-structured qualitative telephone
client interviews
 Case reviews
 Mailed & telephone client surveys
Evaluation Challenges/Limitations
 Data burden concerns on already
overwhelmed parents
 “Post-only” approach
 The failure of mailed surveys
 Move to staff-administered telephone
surveys
Parent - To - Parent Support
 Parents clearly need and desire support
and education
 When asked how they felt when they first
learned their child was deaf or hard of
hearing, parents’ brought up two themes:


The powerful, negative emotional impact of
the news, and
A lack of support or helpful information from
professionals around them at the time
Emotional Impact
 All parents interviewed discussed the
enormous emotional impact of learning
that their child is deaf or hard of hearing

“I could see from the reactions that
something was very wrong. [When I left after
the test] I had become very lost in myself. I
became deaf and blind. I walked right into
traffic. My husband pushed me out of the
way.”

“[I was] shocked and devastated. It was
really devastating, a worst-case scenario …
heartbreaking. This was my first child and I
blamed myself.”

“Relieved and overwhelmed. We had gone
down a lot of speculation about what was
wrong, so it was a relief to get an answer.
But the answer opened a whole other can of
worms. We were overwhelmed.”
Lack of Information or Support
 Many parents mentioned that
professionals present when their child
was diagnosed as deaf or hard of
hearing were neither informative nor
supportive
 At a point when parents needed help the
most, often they found the professionals
around them either did not have
information they needed or made the
situation worse

“I had been consistently advised by doctors
… that there was no need top work on my
daughter’s communication ability since it
was severely limited and other disabilities
needed attention.”

“The nurses…wouldn’t help us at all. They
kept saying he’s never going to hear, he
needs surgery. They wouldn’t answer our
questions.”
Overall Assessment of PL by Clients
 Parents are extremely positive about
Parent Links and the impact it has had
on them and their children

“No one else said you are going to be OK,
[my child] is going to be OK.”

“Parent Links has been very positive and
extremely helpful to my family … It brought
us over a pivotal time in our [child’s] life and
in our education.”
Figure 1: Overall Importance of Parent Links
63
7.4
14.8
14.8
Very
important
%
Somewhat
important
A little
important
%
Not at all
important
70
60
50
40
30
20
10
0
Figure 2: Overall Quality of Parent Links Services
80
70
60
50
40
30
20
10
0
70.4
%
3.7
Poor
7.4
Fair
18.5
%
Good
Excellent
Reducing Parents Sense Of Isolation

“I learned being deaf in and of itself doesn’t
have to limit you … deafness is a big part but
not the only … not the defining part of who you
are.”

“It is important to know our kids are OK just the
way they are and there are other parents going
through the same thing … I never saw this stuff
before. How many parents leave the hospital
with a deaf child?”
Connecting with Other Parents
 A crucial aspect of reducing parent’s sense
of isolation was clearly connecting them
with other parents of deaf and hard of
hearing infants


“We learned we are not alone. She hooked us
up with other families. It was important to hear
other people’s experiences. All we wanted to
know is that they can be happy, normal
children. Parent Links helped us greatly with
‘Oh, my gosh!’”
Figure 3: Sense of Isolation Reduced by Parent Links
59.3
60
50
40
30
20
10
22.2
%
11.1
3.7
3.7
N
A
0
N
A
ot
at
al
l
lit
t
le
So
m
A
ew
ha
t
lo
t
 Meeting other parents with deaf or hard of
hearing children or meeting deaf or hard of
hearing adults is a key element to helping
parents of newly diagnosed infants cope

“It was very important and helpful to see how
other parents are faring. Meeting parents of
deaf children and deaf adults to see how they
dealt with it was very important.”

“[Going to events] helped me by being able to
see young and old adults happy in their world of
deafness. We have met successful adults and
that gives me hope to continue to mix and
introduce [my child] with peers and role models
that are deaf.”
Emotional Support
 Emotional support is the first thing
parents talk about when they discuss
Parent Links, a fact captured in one
quote: “Emotional support is 95% of
what Parent Links has done for me.”

“The most important thing is mostly [my
consultant] just being there.”

“She’s been there emotionally, to listen to
me, acknowledging I’ve got all these
feelings. Someone who doesn’t have a child
with a handicap doesn’t understand.”
Common Ground
 A key element to being able to
understand and provide the needed
support stems from the fact that all of the
consultants have been through the same
experience

“That [she] shared her own experiences
helped, that her own [child] is grown and has
a family, raised our own awareness that our
[child] can be OK.”

“It was very supportive and good to hear
from someone who’s been through it.”
Education
 To a great extent this is because they
have no knowledge about the condition
or how to deal with learning their child is
deaf or hard of hearing
 A clear strength of Parent Links is the
vital information they provide parents
about the condition and how to deal with
it proactively and effectively

“Before Parent Links I was not aware of all
my options or specific areas that are so
important for deaf kids.”

“The educational material on the Parent
Links website and other websites [she] sent
me have been very helpful.”

“[My consultant] hooked us up with a lot of
information.”

““[My consultant’s] been a book of
knowledge to me.”
Empowerment
 All parents reported Parent Links has
empowered them to help and advocate
for their child and that their child is doing
better because of this empowerment

“I am no longer confused or lost. I have
direction and feel empowered. My [child]
now is really doing well and has lots of
interventions specific to her.”

“Because of Parent Links I am better
prepared to advocate. I am [my child’s] best
advocator. [My consultant] has really
empowered me … Without her I don’t know
that I would be as far along now.”
Connections with Professionals
 Connecting parents with relevant
professionals is another critical aspect of
what parents said Parent Links provides

“At the picnic we got to meet this highly
respected interventionist from [our
community] … it was very useful to speak
with him.”

“We asked for the opportunity to observe the
alternative programs to address the
communication and educational needs for a
deaf child. The visits to several programs
were arranged for us by Parent Links.”
Implications
 Findings show that early support
and education is vital for parents of
newly diagnosed deaf and hard of
hearing infants, helping them cope
and empowering them to more
effectively advocate for their child
 This can only lead to better health
and life outcomes for these children
Challenges
 Parent Links has been
unsuccessful to date in acquiring
funds to continue
 This appears to be a factor of
parent support services for specific
disabilities being outside existing
funding streams of federal and state
dollars and deafness being too rare
to be a health priority for the big
health-oriented foundations