Deafness & Education International

ISSN: (Print) (Online) Journal homepage: https://www.tandfonline.com/loi/ydei20

Deaf adults in early intervention programs

Elaine Gale, Michele Berke, Beth Benedict, Stephanie Olson, Karen Putz &
Christie Yoshinaga-Itano

To cite this article: Elaine Gale, Michele Berke, Beth Benedict, Stephanie Olson, Karen Putz &
Christie Yoshinaga-Itano (2021) Deaf adults in early intervention programs, Deafness & Education
International, 23:1, 3-24, DOI: 10.1080/14643154.2019.1664795

To link to this article: https://doi.org/10.1080/14643154.2019.1664795

Published online: 10 Sep 2019.

Submit your article to this journal

Article views: 681

View related articles

View Crossmark data

Citing articles: 4 View citing articles

Full Terms & Conditions of access and use can be found at

https://www.tandfonline.com/action/journalInformation?journalCode=ydei20
DEAFNESS & EDUCATION INTERNATIONAL
2021, VOL. 23, NO. 1, 3–24
https://doi.org/10.1080/14643154.2019.1664795

Deaf adults in early intervention programs*

Elaine Gale a, Michele Berkeb, Beth Benedictc, Stephanie Olsond, Karen Putze
and Christie Yoshinaga-Itanof
a
Department of Special Education, Hunter College, CUNY, New York, NY, USA; bStudent Outcomes
Specialist, California School for the Deaf, Fremont CA, USA; cDepartment of Communication Studies,
Gallaudet University, Washington DC, USA; dChildren’s Hospital Colorado, Denver, CO, USA; eHands &
Voices Headquarters, Boulder, CO, USA; fInstitute of Cognitive Science, University of Colorado at
Boulder, Boulder, USA

ABSTRACT ARTICLE HISTORY

Family-Centred Early Intervention (FCEI), an international Received 18 May 2018
congress that meets biannually, concurred that programmes Revised 3 September 2019
serving young deaf and hard of hearing (D/HH) children and Accepted 3 September 2019
their families should include D/HH adults when offering family
KEYWORDS
social and emotional support (Principle 4) and engaging in Deaf leadership; deaf adults;
collaborative teamwork with D/HH adults (Principle 8) deaf children; family support;
(Moeller, Carr, Seaver, Stredler-Brown, & Holzinger, 2013). family-centred early
However, to date, there is no known published research intervention; collaboration;
investigating roles of D/HH adults in such programmes. This professional development;
article discusses results from an online exploratory survey policy
distributed internationally with the focus on the support and
roles of deaf adults working in programmes serving young
deaf children and their families. Forty-eight respondents
completed the survey. Findings indicate that the support
provided by deaf adults includes educational information and
communication support, and that the major roles provided by
deaf adults are as role models and language providers.
Additionally, respondents reported that families do not have a
diverse range of deaf professionals to connect with in early
intervention programmes. This article concludes with a call to
action for infusing deaf adults in programmes that include
Formalisation, Collaboration, Education, and Infusion. For the
purpose of this manuscript, the term “deaf” is an inclusive
term representing all individuals with various hearing levels
and cultural experiences.

Family-Centred Early Intervention (FCEI), a global partnership between parents

and professionals who are both deaf and hearing, developed an international
consensus of best practices for programmes serving young deaf children and
their families. The consensus panel, which had participants from ten different

CONTACT Elaine Gale [email protected] Department of Special Education, Hunter College, CUNY,
695 Park Avenue, Room 918 West, New York, NY 10065, USA
*This paper is dedicated to the memory of Amy Hile, a leader and role model who made a positive impact in Deaf
education.
This article has been republished with minor changes. These changes do not impact the academic content of the
article.
© 2019 Informa UK Limited, trading as Taylor & Francis Group
4 E. GALE ET AL.

nations, agreed on foundational principles, and it included deaf and hard of

hearing (D/HH) adults connecting with families and being collaborators in
the system (Moeller, Carr, Seaver, Stredler-Brown, & Holzinger, 2013).
Because there is no known published research investigating roles of D/HH
adults in early intervention programmes on an international scale, this
research project explored the role(s) of deaf adults in early intervention pro-
grammes within the context of diverse cultures in a global society such as
roles deaf adults may have in early intervention systems, how they are able
to connect with families to provide support, and if they are infused throughout
the system in diverse roles. For the purposes of this paper, the term “infuse”
will be used to describe deaf adults as part of the entire early intervention
system steeped into the fabric at all levels that may include collaboration, con-
necting, leadership, partnering, or engaging in all levels of decision-making
and service provision. The term “deaf” is being used in this paper as an inclus-
ive term representing all D/HH individuals with various hearing levels,
different primary language usages, ways of communicating, and cultural
experiences. This paper focuses on why it is important to infuse deaf adults
in early intervention systems using anecdotal and scientific evidence and con-
cludes with a call to action.

Why it is important to have deaf adults in early intervention

There are 34 million children with “disabling hearing loss,” which is defined as
greater than 30 dB hearing loss in children (World Health Organization, 2018).
If hearing loss is not addressed early, consequences include the possibility of
delayed language development, academic underachievement, social isolation,
higher risk of injuries, and increased poverty (WHO, 2018). Furthermore, with
90% of deaf babies residing in low-resourced countries where quality health
care and educational opportunities can be challenging, it is important to identify
effective ways to address and improve the quality of life for deaf children (Stor-
beck & Young, 2015). Having deaf adults connect with families and collaborate
with professionals is important since more than 90% of deaf children are born
to hearing parents (Mitchell & Karchmer, 2004). While experiences with deaf
adults can be different depending upon geographic and cultural situation, the
literature shows that hearing parents often do not know what to expect,
having little or no experience with deaf people. For example, when a mother
from the United States first found out that her son was deaf, she said she was
surrounded by hearing people and had no idea what to expect until a deaf
adult walked in the door:
When we first received our son’s diagnosis, I looked at the doctor, he was hearing. I
looked at the audiologist, she was hearing. I looked at the nurse, she was hearing;
and as we walked out, I looked back at the receptionist and she was hearing. I had
 DEAFNESS & EDUCATION INTERNATIONAL 5

no idea what this (raising a deaf or hard of hearing child) was going to look like until you
(the deaf adult) walked in the door. (Olson & Rogers, 2012)

In retrospect, another mother commented on the value of having deaf adults

provide support to her family:
Deaf and hard of hearing encounters really were positive and taught us a lot. For my
daughter, it was the best thing we could have done because she was able to see
from a very young age, Deaf and hard of hearing adults who were out in the commu-
nity, who were working and doing amazing jobs, who had social skills that were won-
derful and welcoming and so that is something I could have not taught her because I
am not Deaf and hard of hearing so for her that was something I would not have been
able to give her if we hadn’t had those visits with Deaf and hard of hearing adults. (Gale,
Berke, Olson, & Benedict, 2018)

Deaf adults can provide a unique perspective from their own experiences as well
as providing culturally-created solutions for effective living (Holcomb, 2013).
Fred Schreiber, the first Executive Director of the National Association of the
Deaf (NAD), described the value of deaf adults:
The basic reason for becoming involved with deaf adults (is this); we are your children
grown. We can, in many instances tell you the things your child would like to tell you, if
he had the vocabulary and the experiences to put his feelings and needs into words.
(Schreiber, 1980, as cited in Leigh, Andrews, & Harris, 2016)

Studies show deaf children with deaf parents have similar cognitive develop-
ment patterns as their hearing peers while deaf children with hearing parents
show significant delays in theory of mind (Schick, De Villiers, De Villiers, & Hoffme-
ister, 2007) and executive function development (Hall, Eigsti, Bortfeld, & Lillo-
Martin, 2016). Regarding vocabulary development, children who had at least
one deaf parent had better vocabulary outcomes (Yoshinaga-Itano, Sedey,
Wiggin, & Chung, 2017). Deaf children with cochlear implants raised by deaf
parents exceeded speech and language development when compared with
deaf children with cochlear implants raised by hearing parents (Davidson, Lillo-
Martin, & Chen Pichler, 2014; Hassanzadeh, 2012). Furthermore, deaf children
with cochlear implants raised by deaf parents who sign had higher intelligence
quotients when compared with deaf children with hearing parents (Amraei,
Amirsalari, & Ajalloueyan, 2017). These findings suggest that when deaf adults
connect with young deaf children regularly, cognitive development is positively
impacted in addition to language and social-emotional development. By exten-
sion, the strategies that deaf adults are using with their children can be shared
with and taught to all parents in order to support their own child’s development.
There is evidence that deaf children of families who received services from
deaf mentors in a Deaf Mentor Experimental Project focusing on bilingual-bicul-
tural programming made more language gains than the deaf peers without deaf
mentors (Watkins, Pittman, & Walden, 1998). Additionally, parents who had
6 E. GALE ET AL.

encounters with deaf adults felt a “strong sense of competence in regard to their
child’s upbringing” (Hintermair, 2000, p. 41), felt their sign language skills, as well
as the communication interactions with their deaf or hard-of-hearing children,
improved (Delk & Weidekamp, 2001), felt it was important to connect with
deaf adults (Jackson, 2011), and felt their child had an improved quality of life
by participating in the Deaf Mentor Family Program (Petersen, Kinoglu, Gozali-
Lee, & MartinRogers, 2016). Furthermore, the deaf adults, who were role
models for young deaf children and their families, felt the families they
worked with had “more positive perspectives on deafness and positive outlooks
for their children” (Rogers & Young, 2011, p. 15).
In addition to connecting families with deaf adults, it is also important that
deaf and hearing professionals collaborate throughout the system for practical
and ethical reasons. From a practical perspective, deaf adults are experts in
issues important to deaf people and can adequately describe what it means to
be deaf. From an ethical perspective, infusing deaf adults in the system or
with a family reduces misrepresentations or irrelevant information (Benedict &
Sass-Lehrer, 2007). Furthermore, having a diverse representation of highly
qualified professionals who happen to be deaf infused throughout the early
intervention system in leadership roles is important for parents to see that
deaf professionals have diverse expertise and professions (Yoshinaga-Itano,
2015).

Recommendations for deaf adults in early intervention

Recommendations to have deaf adults connect with families to provide support
and to collaborate with professionals throughout the system have been pub-
lished as best practice principles in the International Consensus Statement
(Moeller et al., 2013). Briefly, committee members from FCEI gathered a
diverse panel of experts in Bad Ischl, Austria in 2012 with the mission to establish
best-practice principles. The goal was to provide valid, evidence-based principles
for programmes serving families with deaf children. The panel agreed on ten
foundational principles that guide FCEI. Two of the ten principles explicitly rec-
ommend including deaf adults.

Family-Centred Early Intervention Principle 4

The first explicit best practice (found in Principle 4) focuses on social and
emotional support systems for families and recommends that service providers
“support connections between families and adult role models who are D/HH”
(Moeller et al., 2013, p. 435). The intention of Principle 4 is to connect families
to “support systems so they can accrue the necessary knowledge and experi-
ences that can enable them to function effectively on behalf of their D/HH
 DEAFNESS & EDUCATION INTERNATIONAL 7

children” (Moeller et al., 2013, p. 435). Supporting evidence includes “parents

who have many contacts with hearing-impaired adults show evidence of a
strong sense of competence in regard to their child’s upbringing” (Hintermair,
2000, p. 41). Also, in a study examining supports and resources for families
with deaf children, parents rated connecting with mentors and role models as
important (Jackson, 2011).

Family-Centred Early Intervention Principle 8

The second explicit recommendation (found in Principle 8) focuses on collabora-

tive teamwork and recommends that early intervention teams include “individ-
uals who are D/HH (role models/mentors)” (Moeller et al., 2013, p. 440). The
intention of Principle 8 is to establish an optimal team through transdisciplinary
teamwork focusing on the family that “includes professionals with experience in
promoting early development of children who are D/HH” (Moeller et al., 2013,
p. 440). Supporting evidence includes the parents’ needs to have deaf role
models to better understand the capabilities of their deaf children (Rogers &
Young, 2011), and includes promoting language development (Watkins et al.,
1998).
Furthermore, it was recommended that early intervention teams offer families
opportunities for meaningful interactions with adults who are D/HH:

(a) D/HH adults can serve as role models, consultants, and/or mentors to
families, offering information and resources and demonstrate enriching
language experiences.
(b) Involve D/HH community members on the team in culturally and linguisti-
cally sensitive ways. (Moeller et al., 2013, p. 441).

The consensus published by FCEI was influenced by recommendations pub-

lished by the Joint Committee on Infant Hearing (JCIH), which was established
in 1969 to make recommendations regarding early identification for children
with, or at risk for hearing loss and newborn hearing screening in the United
States. The JCIH has explicitly recommended including deaf adults in their pos-
ition statements since 1995 (JCIH, 1995; JCIH, 2000; JCIH, 2007; Muse et al., 2013).
The JCIH provides recommended best practices to Early Hearing Detection and
Intervention (EHDI) programmes throughout the United States and was
approved by the American Academy of Pediatricians, the Council of Educators
of the Deaf, the National Association of the Deaf, the American Academy of Oto-
laryngology: Head and Neck Surgery, American Academy of Audiology, American
Speech, Language and Hearing Association, Directors of Speech and Hearing
Programs in State Health and Welfare Agencies, the Alexander Graham Bell
Association. EHDI is the practice to screen all newborns’ hearing level before
8 E. GALE ET AL.

they leave the hospital. For infants who are identified as deaf should receive
diagnostic evaluation before three months and early intervention by 6
months. This consensus document was approved by all professional organis-
ations working with young deaf children and their families. The first position
statement published in 1995 recommended that deaf and hard of hearing
adults provide information regarding hearing levels and the range of available
communication and educational options (JCIH, 1995). In 2000, the JCIH
updated their position statement by adding a recommendation to allow for
opportunities for families to interact with adults and children who are deaf
and hard of hearing (JCIH, 2000). Seven years later, in another JCIH position state-
ment update, it was recommended that “adults who are deaf or hard of hearing
should play an integral part in the EHDI program” (JCIH, 2007, p. 903). While this
goal specifically identifies EHDI systems (a term widely used for programmes in
the United States) it can also be expanded to early involvement programmes
globally. Additionally, while the JCIH position statement is focused on evi-
dence-based practice in high resourced countries, not all countries have a fully
developed system for early hearing detection and identification. There are
countries that may have newborn screening in place, but not early support fra-
mework to contact families. Other countries cannot afford newborn screening,
but they may have other ways of early identification using risk factors, and
they may have very effective early follow-up. Regardless of how countries
utilise early hearing detection and identification, deaf leadership in early inter-
vention programmes would apply to any programme globally and is not
restricted to countries that have a fully developed EHDI system. In the 2013 sup-
plement to the 2007 JCIH position statement, four of the twelve goals rec-
ommended the involvement of deaf adults.

Joint Committee on Infant Hearing Goal 3

Goal 3 by JCIH emphasises ensuring deaf adults as stakeholders with the goal for
families and their young deaf children to “have EI providers who have the pro-
fessional qualifications and core knowledge and skills to optimize the child’s
development and child/family well-being” (Muse et al., 2013, p. e1328). While
more evidence is needed, “research suggests that outcomes for young children
and their families are better when providers have specialized training specific to
working with infants and toddlers who are D/HH and their families” (Muse et al.,
2013, p. e1329). Goal 3a by JCIH specifically recommends deaf adults as colla-
borative partners in assisting with the development of providing competent
sign language instruction. The intention was that “intervention services to
teach ASL will be provided by professionals who have native or fluent skills
and are trained to teach parents/families and young children” (Muse et al.,
2013, p. e1329). In addition to focusing on families learning ASL from a pro-
fessional native or fluent signer, there is the need for families to have access
 DEAFNESS & EDUCATION INTERNATIONAL 9

to “a language development programme that incorporates classroom-based

teaching, incidental learning opportunities for hearing parents and their children
in natural sign language immersion contexts with deaf adults and children, and
additional support in the form of learning resources.” (Napier, Leigh, & Nann,
2007, p. 84). Additionally, another resource supporting Goal 3a includes results
from a Deaf Mentor Experimental project in which children who received Deaf
Mentor services in a bilingual-bicultural home environment made greater
language gains than children who did not receive Deaf Mentor services
(Watkins et al., 1998). Lastly, resources supporting Goal 3a showed the significant
correlation between parents who had good signing skills and contacts with deaf
adults to the lessening of parental stress since parents displayed more positive
attitudes and could relate to their child more easily (Hintermair, 2000).

Joint Committee on Infant Hearing Goal 10

Another JCIH goal that explicitly calls for the involvement of deaf adults is Goal
10, which recommends that deaf adults be active participants in the develop-
ment and implementation of EHDI systems at the national, state/territory, and
local levels. The goal is that “their participation will be an expected and integral
component of the EHDI systems” (Muse et al., 2013, p. e1337). The rationale is
that language and communication are the heart of the support services and
that it is critical to include “individuals who are D/HH (because they) know
what works to meet their language and communication needs in a way that
people who are hearing cannot.” (Muse et al., 2013, p. e1337).

Joint Committee on Infant Hearing Goal 11

Goal 11 by JCIH is also an explicit goal which recommend deaf adults supporting,
mentoring and guiding young deaf children and their families for the purpose of
ensuring that “all children who are D/HH and their families have access to
support, mentorship, and guidance from individuals who are D/HH” (Muse
et al., 2013, p. e1338). Support for Goal 11 in the 2007 JCIH supplement included
parents having a strong sense of competence for raising their deaf child (Hinter-
mair, 2000), parents identifying deaf adults as an important support source
(Meadow-Orlans, Sass-Lehrer, & Mertens, 2003), and deaf community members
providing perspectives that hearing community members cannot provide
(Chute & Nevins, 2002). When hearing families with young deaf children have
support opportunities from deaf adults, family support of the child is promoted
and family stress is reduced (Calderon & Greenberg, 2003; Hill, 1993).
There have been recommendations for best practices and goals to infuse deaf
adults in programmes serving young deaf children and their families. However,
to date, there is no known research examining the role of deaf adults in pro-
grammes serving families with young deaf children nationally or internationally.
10 E. GALE ET AL.

This paper explores deaf adults in programmes serving young deaf children and
their families, specifically connecting with families and collaborating with
professionals.

Materials and methods

Survey development and distribution
The FCEI Deaf Leadership committee, which was a group of deaf and hearing
professionals with early intervention experience based in the United States,
developed a 26-question online survey using Qualtrics, a survey software. An
online survey was selected for the advantages it offers, which includes being
an effective way to reach a large population and offering respondents flexibility
to complete the survey at their own pace (Callegaro, Manfreda, & Vehovar, 2015).
The survey was developed to prepare for a pre-conference workshop focusing
on Deaf Leadership with the purpose of learning and sharing information
about the role of and best practices for infusing deaf adults in early involvement
programmes around the world. Survey questions and options were developed
by the Deaf Leadership committee as a first attempt to explore the involvement
of deaf adults in early intervention programmes globally. The survey included
questions about newborn screening and services, questions about deaf adults
in early intervention systems, and questions about respondents’ backgrounds
(See Appendix A). All work was conducted with formal approval from the first
author’s Institutional Review Board (IRB), which ensures protection of the
rights and welfare of humans participating in research. After data collection,
all respondents’ names and emails were removed to protect respondents’
identities.
Of all the data collected, this article focuses on results related to questions
derived from the International Consensus statement’s (Moeller et al., 2013) Prin-
ciple 4 (social and emotional support for families from adult role models who are
D/HH) and Principle 8 (early intervention transdisciplinary teams). Specifically,
are deaf adults connecting with families to provide support and are deaf
adults working collaboratively and in diverse roles in early intervention systems?
An email invitation to participate in the survey (with a link to the survey
included) was sent via different avenues. One invitation was sent to professionals
serving families with children who are deaf via the FCEI listserv with around 350
participants. Another invitation was sent to the Association of College Educators
– Deaf and Hard of Hearing (ACE-DHH), an American organisation with around
250 participants. Professionals included teachers of the deaf, speech-language
pathologists, and audiologists. A third invitation was sent to approximately 50
organisations listed under the International Deaf and Disability Organization
link via Gallaudet University’s Office of Research Support and International
Affairs (Gallaudet University, n.d.) also received the email invitation. Additionally,
 DEAFNESS & EDUCATION INTERNATIONAL 11

a snowballing effect was utilised whereby professionals were encouraged to

share the invitation with others in the field.

Survey respondents
Out of a total of 133 recorded responses, 48 respondents successfully completed
the survey by answering all the questions. The 48 respondents who completed
the survey represented six continents including North America (United States,
Canada, & Haiti), Europe (Austria, England, Germany, & the Netherlands), South
America (Ecuador), Asia (Bangladesh, Cambodia, India, Iran, Israel, & Palestine),
Africa (Ethiopia, Kenya, Nigeria, & South Africa), and Australia (Australia & New
Zealand) (see Figure 1). Additionally, 52% of the respondents listed their pro-
fession as an educator (such as early interventionist, teacher, and faculty), 16%
of the respondents listed their profession as either an audiologist or Speech
Language Pathologist (SLP). The remaining 31% of the respondents listed a
variety of roles that included administrator, clinical psychologist, therapy

Continent Percent Respondents Countries

North America 40% 19 Canada, Haiti, United States,
Europe 19% 9 Austria, England, Germany, Netherlands
Australia 17% 8 Australia, New Zealand
Asia 14% 7 Bangladesh, Cambodia, India, Iran, Israel,
Palestine
Africa 8% 4 Ethiopa, Kenya, Nigeria, South Africa
South America 2% 1 Ecuador

Figure 1. Respondents residence grouped by continent (n = 48).

12 E. GALE ET AL.

assistant, consultant, project manager, volunteer, parent, and computer scientist.

The survey questions analysed and reported in this article focused on deaf adults
working in programmes serving young deaf children and their families related to
the following: the hearing status of the first point of contact; whether there is a
diverse range of deaf adults; possible reasons that programmes do not have deaf
adults; roles of deaf adults in programmes; and support provided to families by
deaf adults.

Results
Out of 48 respondents, 40 answered the question regarding the hearing level of
the professional who is the first point of contact for the family once an infant is
identified as deaf. The meaning of “first point of contact” is the person who
follows up with the family after the infant is identified as deaf. Answers to the
hearing level of the first point of contact resulted in 80% hearing, 15% hearing
and deaf, and 5% deaf. More specifically, two respondents (Austria and Cambo-
dia) indicated that the first point of contact is deaf, and seven respondents (two
from USA, two from Australia, two from Austria, and one from Israel) indicated
that the first point of contact is both, deaf and hearing. The remaining 31 respon-
dents indicated that the first point of contact is hearing (See Figure 2).
Furthermore, when asked if there is a diverse range of professionals who are
deaf for families to connect with at some point in the child’s life, 73% of the 48
respondents reported no and 27% reported yes (See Figure 3).
Respondents were asked “If there are no professionals who are D/deaf and
hard of hearing, why do you think that is?” and to answer the question why

Figure 2. The hearing status of EI professionals who are the first point of contact for families
family (n = 40).
 DEAFNESS & EDUCATION INTERNATIONAL 13

Figure 3. Diverse range of deaf professionals for families to connect with at some point in the
child’s life (n = 48).

there are no professionals who are deaf, respondents were given three choices
and asked to check all that apply. The three choices were “lack of funding,” “lack
of available professionals who are deaf and hard of hearing,” and “other,” which
included a text box. There were 45 response counts. “Lack of funding” accounted
for 20%, “lack of available professionals who are deaf and hard of hearing”
accounted for 42% and “other” accounted for 38%. Overall there were 17 com-
ments provided in the “other” textbox and 12 comments related to perceptions.
Comments included, “People who are dhh are not encouraged to work in the EI
field”, “not recognizing the skill sets of Deaf/HH”, “attitudes of hiring personnel”,
and “our institute is too small”.
For the question that asked “what support do the professionals who are D/
deaf and hard of hearing provide to families?” respondents were instructed to
check all listed supports that apply. The types of supports listed included coun-
selling support, intervention strategies, educational information, and communi-
cation support. The respondents also had the option to check “other” and leave a
comment. With the option to check more than one support, there was a total of
105 response count. Out of the 105 response count, the two most common
responses were educational information (25%) and communication support
(25%) (See Figure 4).
For the question “what role(s) do the professionals who are D/deaf and hard of
hearing have in your program?” respondents were instructed to check all listed
roles that apply. The roles listed included the first contact, mentor/role model,
sign language instructor, early intervention provider, counsellor, health pro-
fessional (physician, audiologist, speech/language, etc.), director, and supervisor.
The respondents also had the option to check “other” and leave a comment. Out
of the 103-response count, the two most common roles selected were mentor/
14 E. GALE ET AL.

Figure 4. The support role of deaf professionals in the family (n = 48).

role models (24%) and sign language instructors (20%). The two least common
roles were director (3%) and first contact (3%) (See Figure 5).

Discussion
FCEI best practice principles state that deaf adults should connect with families
(Principle 4) and engage in collaborative teamwork on a transdisciplinary team
(Principle 8) (Moeller et al., 2013). Results of this study show that when deaf
adults are involved in early intervention programmes, they serve as role
models and language providers, and typically provide educational and infor-
mation support. The finding is supported by programmes such as the Deaf
Mentor Experimental Project (Watkins et al., 1998), Deaf Mentor Family
Program (Petersen et al., 2016), and HI-HOPES (Storbeck & Pittman, 2008).
However, other roles, such as deaf adults being a first point of contact once a
child is identified, being a health professional, and/or being a director, are not
as common. The finding that there is a lack of a diverse range of deaf pro-
fessionals who are deaf with whom families can connect does not reflect the
deaf population in general as there is no shortage of deaf adults from diverse
backgrounds, from a range of ethnic backgrounds, hearing levels, occupations,
and family backgrounds (Benedict et al., 2015).
A reason why deaf adults do not have diverse roles in early intervention
systems could be that professionals are not aware of the positive impact deaf
adults can have throughout the system. For example, survey respondents com-
mented that reasons for the lack of deaf adults is due to personnel attitudes, a
perceived lack of deaf professionals, not encouraging deaf individuals to work
in the field, and not recognising skill sets of deaf individuals. Regarding person-
nel attitudes, because deafness is commonly framed in a pathological way
 DEAFNESS & EDUCATION INTERNATIONAL 15

Figure 5. Roles deaf professionals have in EI programmes (n = 43).

focusing on the lack of hearing as a problem to be fixed with assistive devices

such as hearing aids and cochlear implants, a solution can be education about
deaf people and deaf culture, which can increase understanding and respect
for deaf culture and promote more positive attitudes about deaf people (Lee
& Pott, 2018). This solution includes framing deafness using the social model
(Bauman & Murray, 2014) focusing on linguistic and cultural identity that
values using sign language as primary means of communication. It can be eye
opening for people to learn that deaf parents who are expecting a child often
wish for a deaf newborn because they want to share their language and
16 E. GALE ET AL.

culture (Holcomb, 2013). Furthermore, deaf parents with deaf children who are
proud of their language and deaf culture indicate high expectations for their
deaf child to be fluent in ASL and English (Mitchiner, 2014).
Another strategy to infuse deaf adults throughout the early intervention
systems is to explicitly include deaf adults in other foundational principles. Cur-
rently there are ten foundational principles in the FCEI consensus statement
(Moeller et al., 2013) but only two of the ten principles explicitly include deaf
adults. Perhaps explicitly including deaf adults in other principles could help
increase and diversify deaf adult roles throughout the early intervention
system. For example, the first principle focusing on early, timely, and equitable
access to services is crucial; however, deaf adults are not explicitly identified
as being part of the early support team. Intentionally having deaf adults as
initial service providers could be a valuable resource for families when their
child is first identified as deaf. Increasing awareness of the positive impact
deaf adults provide and including deaf adults in other principles can be a step
forward for infusing a diverse range of deaf professionals in early intervention.

Limitations and next steps

There were several limitations to the study, including reliability of the instrument,
self-reported data, sample size, demographic skew of the sample, and, quite
possibly, limited access to the online survey format. Limitations related to the
reliability of instrument includes the order of questions and accessibility of the
survey. While the number of survey questions provided helpful insights when
analysed, there were a few questions that were difficult to analyse because of
the order in which they were presented. For example, a survey was not con-
sidered complete unless the background questions were answered, and out of
133 who started the survey, 85 did not complete it. It is possible that the 85
respondents who did not complete the survey were unable to answer the ques-
tions related to the early identification and intervention system. It could be that
some respondents were not able to complete the survey because they did not
have early identification and intervention in place. Many participants stopped
at the third question, which asked about the first point of contact for the
family, and did not continue on with the survey. This could be due to not
knowing the information or not having an early intervention system in place.
With the unanswered background questions at the end of the survey, the
authors were unable to follow up with those respondents. Perhaps the demo-
graphic background/information questions should have been at the beginning
of the survey.
Another limitation was that the survey was only made available in English and
online. This resulted in a sampling bias because only those who were comforta-
ble with written English and had access to the internet could reply. This also
resulted in the majority of respondents being from North America. A survey in
 DEAFNESS & EDUCATION INTERNATIONAL 17

multiple languages (both spoken and sign) would attract a larger pool of respon-
dents and result in a more balanced representation of continents. Additionally,
interpretation of meaning and questions such as “FCEI,” “D/deaf,” and “first
point of contact” may mean different things to different respondents and
should be interpreted with caution.
Despite the limitations, this preliminary survey provided information and vali-
dated earlier anecdotal information about the role of deaf adults involved in
early intervention systems around the globe. This information will enable the
authors to continue the discussion and to promote the need to infuse deaf
adults wherever such programmes exist.

Call to action
Similar to the call to action from FCEI’s best practices international consensus
statement (Moeller et al., 2013), recommendations for moving forward include
a call to action for infusing deaf adults worldwide in programmes serving
young deaf children and their families by implementing the following actions:

. Formalise and Fund:

Formalise plans to infuse deaf adults in programmes (e.g. legislation, measur-
able goals)
Funds to support deaf adults in leadership roles (e.g. grants, scholarships,
positions)
For example, write a letter of endorsement from your agency, organisation, or
personal point of view for the Principles Statement and send it to appropriate
policy makers in the respective countries.
. Collaborate and Communicate:
Collaboration between deaf and hearing professionals (e.g. research, training)
Communicate resources (e.g. success stories, research findings)
For example, share the Principles document with colleagues and leaders.
Support research agendas through collaboration or examination of practices.
. Educate and Evaluate:
Educate deaf and hearing individuals (e.g. training programmes, workshops)
Evaluate FCEI programmes to ensure deaf adults are infused in early interven-
tion programmes (e.g. goals, principles)
For example, embed these Principles in legislation, guidelines, consensus
papers, and position papers regarding early intervention services and models.
. Infuse and Include:
Infuse deaf adults in programmes at all levels (e.g. advisory board, director)
Include diverse deaf adults (e.g. communication choices, professions)
For example, recruit deaf adults to take part in the leadership related to FCEI.
18 E. GALE ET AL.

Conclusion
FCEI best practice principles recommend deaf adults connect with families (Prin-
ciple 4) and engage in collaborative teamwork on a transdisciplinary team (Prin-
ciple 8) (Moeller et al., 2013). Results of this study showed deaf adults serve as
role models and language providers, and typically provide educational and infor-
mation support. However, results also showed it is not common for deaf adults to
be in roles as a first point of contact once a child is identified, a health pro-
fessional, and/or a director.
Infusing deaf adults in the early intervention system is a way for deaf adults to
be ingrained in the system at all levels providing parents support regarding the
health and education systems assuming diverse roles throughout the system,
including educational, leadership, and medical positions. It is important to
infuse deaf adults in early intervention because more than 90% of deaf children
are born to hearing parents (Mitchell & Karchmer, 2004) and the parents may
have little or no experience with deaf people or even expectations regarding
their deaf child. Programmes that have diverse representation of highly
qualified deaf professionals in first-contact roles after identification simply
provide parents with the most qualified professionals who may happen to also
be deaf. When parents interact with deaf adults, it is “not because they are
deaf or hard of hearing, but because they have a significant service and expertise
to provide the family” (Yoshinaga-Itano, 2015). Recognising the positive impact
that deaf adults provide to their own children as well as deaf children with
hearing parents and including deaf adults in other FCEI principles are strategies
to encourage the infusion of deaf adults throughout the early intervention
system. A call to action to infuse deaf adults in the early intervention system
includes Formalisation, Collaboration, Education, and Infusion.

Disclosure statement
No potential conflict of interest was reported by the authors.

Notes on contributors
Elaine Gale is an assistant professor and coordinator of the deaf and hard of hearing teacher
preparation program at Hunter College, CUNY. She is the chair of the Deaf Leadership Inter-
national Alliance (DLIA) and her research experiences include joint attention, theory of
mind, and sign language development.
Michele Berke has worked for over 30 years in programmes within the Deaf community. Her
experience includes management of a rest home for deaf and deaf-blind senior citizens,
directing Gallaudet University’s western regional office, coordinating a US Department of Edu-
cation funded project to develop an ASL Assessment tool, and teaching college-level Linguis-
tics of ASL courses. Berke currently works at the California School for the Deaf in Fremont as
the Student Outcomes Specialist where she is responsible for assessment and data analysis.
 DEAFNESS & EDUCATION INTERNATIONAL 19

Her doctoral studies in Speech, Language, and Hearing Sciences from the University of Color-
ado in Boulder focused on exploring the shared reading practices of Deaf and hearing mothers
and their pre-school children.
Beth S. Benedict, Ph.D., a Professor in the Department of Communication Studies and Execu-
tive director of Undergraduate Admissions and Outreach at Gallaudet University, Washington,
D.C., has focused on family involvement in schools with deaf and hard of hearing children,
early childhood education, advocacy, early communication, and partnerships between deaf
and hearing professionals and early intervention programmes and services. Her work has
been shared in numerous publications and through her work as a national and international
presenter. Dr. Benedict is very involved in different organisations and boards. She was the
Chair of the Joint Committee on Infant Hearing, President of the American Society of Deaf Chil-
dren, on the Council of Education of the Deaf, the Maryland Universal Newborn Hearing
Screening Advisory Council and actively involved in a variety of other EHDI initiatives.
Stephanie Olson currently works as a Family Consultant with the Bill Daniels Center for Chil-
dren’s Hearing at Children’s Hospital Colorado and as the Co-Director Deaf and Hard of
Hearing Infusion with Hands & Voices. She previously worked for the Colorado Home Interven-
tion Program. During 2009, she was part of a team from Children’s Hospital Colorado that tra-
velled to London, South Africa, Brazil and New Zealand and presented on best practices in
supporting families. Stephanie has presented at the International Family Centred Early Inter-
vention (FCEI) Austria, in 2012, 2014 and 2016. She participated in a U.S. and Russian cultural
exchange in 2015 and 2016 with Hands & Voices to increase the understanding and impact of
Deaf and hard of hearing individuals in the parenting journey and professionals who work
with those families.
Karen Putz is a deaf mom of three deaf and hard of hearing kids. She worked in early inter-
vention as a Deaf Mentor for 13 years. She is the Co-Director of Deaf and Hard of Hearing Infu-
sion at Hands & Voices.
Dr. Christine Yoshinaga-Itano is a Research Professor in the Institute of Cognitive Science,
Center for Neurosciences at the University of Colorado-Boulder, the Department of Otolaryn-
gology and Audiology at the University of Colorado-Denver and the Marion Downs Center. In
1996 she developed the Marion Downs National Center. Since 1996, Dr. Yoshinaga-Itano has
assisted many state departments of education and public health agencies, schools for the deaf
and the blind, and early intervention programmes throughout the United States and its terri-
tories. In addition, she has served as a consultant for many countries currently developing their
early hearing detection and intervention programmes, including the United Kingdom, Canada,
Australia, New Zealand, Japan, China, Korea, Belgium, Poland, Spain, Austria, Denmark,
Sweden, Norway, the Netherlands, Mexico, Chile, Argentina, Brazil, Thailand, the Philippines,
and South Africa.

ORCID
Elaine Gale http://orcid.org/0000-0003-3739-8115

References
Amraei, K., Amirsalari, S., & Ajalloueyan, M. (2017). Comparison of intelligence quotients of first-
and second-generation deaf children with cochlear implants. International Journal of
Pediatric Otorhinolaryngology, 92, 167–170. doi:10.1016/j.ijporl.2016.10.005
20 E. GALE ET AL.

Bauman, H. D. L., & Murray, J. J. (Eds.). (2014). Deaf gain: Raising the stakes for human diversity.
Minneapolis, MN: University of Minnesota Press.
Benedict, B., Crace, J., Holmes, T., Hossler, T., Oliva, G., Raimondo, B., … Vincent, J. (2015). Deaf
community support for families: The best of partnerships. In L. Schmeltz (Ed.), The NCHAM
ebook: A resource guide for early hearing detection and intervention (EHDI) (pp. 18-1–18-10).
Retrieved from http://www.infanthearing.org/ehdi-ebook/2015_ebook/18-Chapter18DeafC
ommunity2015.pdf
Benedict, B. S., & Sass-Lehrer, M. (2007). Deaf hearing partnerships: Ethical and communication
considerations. American Annals of the Deaf, 152(3), 275–282.
Calderon, R., & Greenberg, M. (2003). Social and emotional development of deaf children. In
Oxford handbook of deaf studies, language, and education (Vol. 1, pp. 177–189). New York,
NY: Oxford University Press.
Callegaro, M., Manfreda, K. L., & Vehovar, V. (2015). Web survey methodology. London: Sage
Publications.
Chute, P. M., & Nevins, M. E. (2002). The parents’ guide to cochlear implants. Washington, DC:
Gallaudet University Press.
Davidson, K., Lillo-Martin, D., & Chen Pichler, D. (2014). Spoken English language development
among native signing children with cochlear implants. Journal of Deaf Studies and Deaf
Education, 19(2), 238–250. doi:10.1093/deafed/ent045
Delk, L., & Weidekamp, L. (2001). Shared reading project: Evaluating implementation processes
and family outcomes. Washington, DC: Laurent Clerc National Deaf Education Centre,
Gallaudet University.
Gale, E., Berke, M., Olson, S., & Benedict, B. [Barmherzige Brüder Linz]. (2018, July 25). Deaf lea-
dership [video file]. Retrieved from https://www.youtube.com/watch?v=fMxL4eYAMxY&fe
ature=youtu.be.
Gallaudet University Office of Research Support and International Affairs. (n.d.). International
deaf and disability organizations. Retrieved from https://www.gallaudet.edu/research-
support-and-international-affairs/international-affairs/world-deaf-information-resource/de
af-orgs/international-deaf-and-disability-organizations.
Hall, M. L., Eigsti, I. M., Bortfeld, H., & Lillo-Martin, D. (2016). Auditory deprivation does not
impair executive function, but language deprivation might: Evidence from a parent-
report measure in deaf native signing children. Journal of Deaf Studies and Deaf
Education, 22(1), 9–21. doi:10.1093/deafed/enw054
Hassanzadeh, S. (2012). Outcomes of cochlear implantation in deaf children of deaf parents:
Comparative study. The Journal of Laryngology & Otology, 126(10), 989–994. doi:10.1017/
S0022215112001909
Hill, P. (1993). The need for deaf adult role models in early intervention programs for deaf chil-
dren. ACEHI Journal, 19, 14–20.
Hintermair, M. (2000). Hearing impairment, social networks, and coping: The need for families
with hearing-impaired children to relate to other parents and to hearing-impaired adults.
American Annals of the Deaf, 145(1), 41–53. doi:10.1353/aad.2012.0244
Holcomb, T. K. (2013). Introduction to American deaf culture. New York, NY: Oxford University
Press.
Jackson, C. W. (2011). Family supports and resources for parents of children who are deaf or
hard of hearing. American Annals of the Deaf, 156(4), 343–362. doi:10.1353/aad.2011.0038
Joint Committee on Infant Hearing. (1995). Joint committee on infant hearing 1994 position
statement. Pediatrics, 95(1), 152–156.
Joint Committee on Infant Hearing. (2000). American Academy of Audiology, American
Academy of Pediatrics, American speech-language-hearing association and directors of
speech and hearing programs in state health and welfare agencies: Year 2000 position
 DEAFNESS & EDUCATION INTERNATIONAL 21

statement: Principles and guidelines for early hearing detection and intervention programs.
Pediatrics, 106, 798–817. doi:10.1542/peds.106.4.798
Joint Committee on Infant Hearing. (2007). Year 2007 position statement: Principles and guide-
lines for early hearing detection and Intervention programs. Pediatrics, 120(4), 898–921.
doi:10.1542/peds.2007-2333
Lee, C., & Pott, S. A. (2018). University students’ attitudes towards deaf people: Educational
implications for the future. Deafness & Education International, 20(2), 80–99. doi:10.1080/
14643154.2018.1438777
Leigh, I. W., Andrews, J. F., & Harris, R. (2016). Deaf culture: Exploring deaf communities in the
United States. San Diego, CA: Plural Publishing.
Meadow-Orlans, K. P., Sass-Lehrer, M., & Mertens, D. M. (2003). Parents and their deaf children:
The early years. Washington, DC: Gallaudet University Press.
Mitchell, R. E., & Karchmer, M. A. (2004). Chasing the mythical ten percent: Parental hearing
status of deaf and hard of hearing students in the United States. Sign language Studies, 4
(2), 138–163. doi:10.1353/sls.2004.0005
Mitchiner, J. C. (2014). Deaf parents of cochlear-implanted children: Beliefs on bimodal bilin-
gualism. Journal of Deaf Studies and Deaf Education, 20(1), 51–66. doi:10.1093/deafed/
enu028
Moeller, M. P., Carr, G., Seaver, L., Stredler-Brown, A., & Holzinger, D. (2013). Best practices in
family- centered early intervention for children who are deaf or hard of hearing: An inter-
national consensus statement. Journal of Deaf Studies and Deaf Education, 18(4), 429–445.
doi:10.1093/deafed/ent034
Muse, C., Harrison, J., Yoshinaga-Itano, C., Grimes, A., Brookhouser, P. E., Epstein, S., … Martin, P.
(2013). Supplement to the JCIH 2007 position statement: Principles and guidelines for early
intervention after confirmation that a child is deaf or hard of hearing. Pediatrics, 131(4),
e1324–e1349. doi:10.1542/peds.2013-0008
Napier, J., Leigh, G., & Nann, S. (2007). Teaching sign language to hearing parents of deaf chil-
dren: An action research process. Deafness and Education International, 9(2), 83–100. doi:10.
1179/146431507790560020
Olson, S., & Rogers, K. (2012). Enhancing support for early identified deaf children using deaf and
hard of hearing professionals. Paper presented at the 1st international congress on family-
centred early intervention for children who are deaf or hard of hearing, Bad Ischl, Austria.
Petersen, A., Kinoglu, S., Gozali-Lee, E., & MartinRogers, N. (2016, August). Lifetrack’s deaf
mentor family program: An evaluation of the experiences and outcomes for participating
families. Retrieved from https://www.wilder.org/sites/default/files/imports/LifetrackDea
fMentorProgram_8-16.pdf.
Rogers, K. D., & Young, A. M. (2011). Being a deaf role model: Deaf people’s experiences of
working with families and deaf young people. Deafness & Education International, 13(1),
2–16. doi:10.1179/1557069X10Y.0000000004
Schick, B., De Villiers, P., De Villiers, J., & Hoffmeister, R. (2007). Language and theory of mind: A
study of deaf children. Child Development, 78(2), 376–396. doi:10.1111/j.1467-8624.2007.
01004.x
Störbeck, C., & Pittman, P. (2008). Early intervention in South Africa: Moving beyond hearing
screening. International Journal of Audiology, 47(sup1), S36–S43. doi:10.1080/1499202080
2294040
Storbeck, C., & Young, A. M. (2015). Early intervention in challenging national contexts. In M.
Sass- Lehrer (Ed.), Early intervention for deaf and hard-of-hearing infants, toddlers, and
their families: Interdisciplinary perspectives (pp. 305–328). New York, NY: Oxford University
Press.
22 E. GALE ET AL.

Watkins, S., Pittman, P., & Walden, B. (1998). The deaf mentor experimental project for young
children who are deaf and their families. American Annals of the Deaf, 143(1), 29–34. doi:10.
1353/aad.2012.0098
World Health Organization. (2018, March). Deafness and hearing loss. Retrieved from https://
www.who.int/news-room/fact-sheets/detail/deafness-and-hearing-loss.
Yoshinaga-Itano, C. (2015, June). Towards a new model for the deaf infusion of leadership in early
hearing detection and intervention services. Retrieved from https://www.deafnessforum.org.
au/wp-content/uploads/documents/research_publications/2015_lhmo.pdf.
Yoshinaga-Itano, C., Sedey, A. L., Wiggin, M., & Chung, W. (2017). Early hearing detection and
vocabulary of children with hearing loss. Pediatrics, 140, e20162964. doi:10.1542/peds.2016-
2964

Appendix A

Survey questions
Newborn screening and services questions

(1). Does your country/region mandate Universal Newborn Hearing Screening?

Answer selection: Yes, No, Not Sure
(2). Does your country have a referral programme?
Answer selection: Yes No, Not Sure (if No is selected, Qualtrics skips to #6.)
(3). Once an infant is identified as D/deaf and hard of hearing, who is the first point of
contact for the family?
Answer selection: Audiologist, Parent, Early Intervention Specialist, Social Worker, Other
(text box), There is no referral programme
(4). Is this first point of contact either:
Answer selection: Deaf and Hard of Hearing, Hearing, Both, Neither
(5). At what point in the child’s life does the referral process happen?
Answer selection: text box (If 5. At what point in the chi … Is Not Empty, Then Skip To 7.)
(6). If there is not a referral process in place, are there plans to implement one?
Answer selection: text box
(7). What types of services are available to families in Early Involvement programmes?
(Select all that apply)
Answer selection: Early language support, Counselling services, Information on cognitive
development, Information on social-emotional development, Education information,
Centred-based language instruction/services, Other (text box)
(8). If language instruction in the home is an available service, please choose the
language being taught: (Select all that apply)
Answer selection: Sign language, spoken language, Language in the home is not an avail-
able service
(9). How many times will a family with a child who is D/deaf and hard of hearing have
contact with a professional who is also D/deaf and hard of hearing? (up until the
child is 5 years old)
Answer selection: (Drag slider to express numeric amount from 0 to 100 to indicate
number of times)
(10). Is there a diverse range of professionals who are D/deaf and hard of hearing for
families to connect with at some point in the child’s life?
Answer selection: Yes, No
 DEAFNESS & EDUCATION INTERNATIONAL 23

Professionals who are D/deaf and hard of hearing questions

(11). About how many professionals does your programme have in total (D/deaf, hard of
hearing, and hearing)?
Answer selection: (Drag slider to express numeric amount from 0 to 100 to indicate
number of total professionals)
(12). Of the professionals in your program, about how many are D/deaf and hard of
hearing?
Answer selection: (Drag slider to express numeric amount from 0 to 100 to indicate
number of total professionals who are DHH)
(13). If there are no professionals who are D/deaf and hard of hearing, why do you think
that is? (Check all that apply)
Answer selection: Lack of funding, Lack of available professionals who are Deaf and Hard
of Hearing, Other (text box)
(14). Which professionals/expertise professionals in your system are D/deaf and hard of
hearing: (Check all that apply)
Answer selection: Early Interventionist, Audiologist, Physicians, Social Workers, Counse-
lors, Psychologists, Teachers, Professors, Engineers, Writers, Actors, Other (text box)
(15). What role(s) do the professionals who are D/deaf and hard of hearing have in your
programme? (Check all that apply)
Answer selection: The first contact, Mentor/role model, Sign language instructor, Early
intervention provider, Counselor, Health professional (physician, audiologist, speech/
language, etc.), Director, Supervisor, Other (text box)
(16). What support do the professionals who are D/deaf and hard of hearing provide to
families? (Check all that apply)
Answer selection: Counselling support, Intervention strategies, Educational information,
Communication support, Other (text box)
(17). Do professionals who are D/deaf and hard of hearing receive formalised training in
the support they provide to the families?
Answer selection: Yes, No
(18). In your opinion, what are best practices related to including professionals who are
D/deaf and hard of hearing in Early Intervention programmes?
Answer selection: text box
(19). In your opinion, what are the barriers/challenges for including D/deaf and hard of
hearing professionals in Early Intervention programmes?
Answer selection: text box
(20). Please identify any suggestions on how to overcome barriers/challenges for includ-
ing D/deaf and hard of hearing professionals in Early Intervention programmes.
Answer selection: text box
(21). Do you plan to attend the 3rd annual Family Centred Early Intervention (FCEI)
conference?
Answer selection: Yes, No, Not Sure
(22). Do you plan to attend the D/deaf and Hard of Hearing Leadership pre-conference
at the 3rd annual FCEI conference?
Answer selection: Yes, No, Not Sure
(23). If you do not plan to attend the 3rd annual FCEI conference, would you be inter-
ested in future information and/or results of this survey?
Answer selection: Yes, No, Not Sure
(24). Any feedback you may have regarding this survey:
Answer selection: text box
24 E. GALE ET AL.

Background questions

(25). Name:
Answer selection: text box
(26). Email:
Answer selection: text box
(27). Country in which you reside:
Answer selection: text box
(28). State or region in which you reside:
Answer selection: text box
(29). Your profession:
Answer selection: text box