Experiences that occur during the earliest years of life critically
impact children’s abilities to learn, move, and interact with others. This is
especially true for children with severe sensory and multiple disabilities, for
whom physical, communicative, cognitive, social, and emotional
developmental domains are deeply intertwined. In recognition of the
importance of appropriate early learning experiences for children who are
deaf-blind, the National Consortium on Deaf-Blindness (NCDB) selected early
childhood identification and intervention as one of five focus areas for the
formation of partnerships to promote initiatives aligned with federal priorities
to meet the most frequently identified needs of children and youth who are
deaf-blind and their families and service providers.
In July 2007, an NCDB work group was established to lead activities
in the early childhood identification and intervention focus area. The initial
tasks of the group were to gather information about current needs and
practices and to identify potential state and national entities interested in
forming partnerships with NCDB on early childhood initiatives. The following
three primary activities were conducted to accomplish these tasks: (a) a
survey of state deaf-blind project directors, (b) focus group interviews with
state deaf-blind project personnel in eight states, and (c) an extensive
literature review. Collectively, the findings from these activities indicate a
need for new strategies to improve early identification of infants and young
children who are deaf-blind and increase referrals of them to state deaf-blind
projects. As a result, the work group, now called the Early Identification
Work Group (EIWG), narrowed its focus to efforts designed to promote early identification and referral. This report describes the findings that led to this
decision and discusses future directions for NCDB as it forms partnerships to
develop and evaluate initiatives to improve early identification of children
who are deaf-blind.
The Need for Initiatives to Improve Early
Identification
Experts who work with children who have disabilities have long
believed that early intervention services improve educational and social
outcomes (Guralnick, 1997). The early years of life are important,
particularly for communication and language development, because this is
the time of life when the brain is at its highest capacity to undergo structural
changes in response to external stimulation, a process known as neural
plasticity (Cole & Flexer, 2007, p. 2). Although no studies have investigated
outcomes associated with early intervention for children who are deaf-blind,
numerous studies have shown that infants who receive early identification
and intervention for hearing loss in the first few months of life achieve
significantly greater language skills than those who are identified later
(Apuzzo & Yoshinaga-Itano, 1995; Calderon & Naidu, 2000; Kennedy et al.,
2006; Moeller, 2000; Yoshinaga-Itano, Coulter, & Thomson, 2000;
Yoshinaga-Itano, Sedey, Coulter, & Mehl, 1998). Additionally, research on
the plasticity of the brain related to hearing and visual perception strongly
supports the need for early identification and early provision of services
(Mitchell & Maslin, 2007; Sharma, Gilley, Dorman, & Baldwin, 2007).
Among professionals who work in the field of deaf-blindness, there is strong consensus that early intervention is crucial (Murdoch, 2004), but
findings from the National Deaf-Blind Child Count (NCDB, 2008), which
includes data on children who are deaf-blind from birth through age 21 in
every state, indicate that many children are not referred to state deaf-blind
projects until after age three. Child count data are collected by each state
deaf-blind project and submitted to NCDB. NCDB compiles the data for the U.S. Department of Education’s Office of Special Education Programs
(OSEP). According to the child count, there are almost twice as many children in the age 3- to 6-year-old category than the 0- to 3-year-old
category, suggesting that many children who are deaf-blind are not referred
to state deaf-blind projects until age 3 or older.
2007
Deaf-Blind Child Count
Ages
|
|
birth - 1
|
97
|
1 - 2
|
223
|
2 - 3
|
355
|
3 - 4
|
396
|
4 - 5
|
376
|
5 - 6
|
426
|
Early Childhood Needs Survey
To learn more about the state deaf-blind projects’ early identification
and intervention efforts, NCDB’s Early Identification Work Group (EIWG)
conducted a survey of state deaf-blind project directors in February 2008.
The survey asked a number of questions about practices and programs
related to early identification, natural environments, preschool inclusion, child outcomes, and early childhood transition. These categories are targeted
by the U.S. Department of Education in the State Performance Plan (SPP) for
early intervention and preschool programs. Of the 35 states that responded,
69% indicated that they do not believe their state projects have adequately
identified infants who are deaf-blind prior to 1 year of age, and 53% do not
believe they have adequately identified children who are deaf-blind prior to 3
years of age. Great variation in the percentage of children who are identified
before age 3 exists among states, ranging from 0% to 26% of the total
number of children who are deaf-blind (NCDB, 2008).
The survey also asked respondents to indicate topical areas for which
they would like to receive technical assistance (TA) from NCDB. The results
clearly reflect that state deaf-blind projects are interested in receiving TA on
strategies to improve early identification. Fifty-four percent of respondents
indicated interest in TA related to collaboration with the medical community
in their states to improve early identification, and 34% would like TA on
collaboration with their state’s Part C and early hearing detection and
intervention (EHDI) programs for the same purpose.
Early Identification Focus Group
To learn more about issues related to early identification, a focus
group session was conducted with personnel from eight state deaf-blind
projects in October 2008. The states were selected based on consistently
high rates of early identification or demonstration of significant improvement
in early identification from 2005 to 2007. Also, this group had a variety of
geographic, cultural, and population characteristics. The primary purpose of the focus group was to identify critical components of effective early
identification efforts in these states.
Several overarching themes emerged in the focus group session
related to the early identification and referral of young children with deaf-blindness. First, although each state is unique, Part C programs play a key
role in early identification and referral in most state deaf-blind projects.
Rather than refer young children who are deaf-blind to state deaf-blind
projects, health care and social service providers typically make referrals to
Part C programs. Focus group participants emphasized the development of
personal relationships with Part C coordinators as an essential component of
early identification. They also described a number of specific strategies to
facilitate the early identification and referral of young children with deaf-blindness, including conducting an annual census analysis to identify
geographic areas within their states in which to intensify identification
efforts; providing multiple avenues for parents and professionals to make
referrals to the deaf-blind project; having someone on staff with expertise in
the area of early intervention; and raising awareness of deaf-blindness and
the state deaf-blind project by serving on their state's interagency
coordinating committee for early childhood issues.
Participants also stated that public awareness and referral materials
play a significant role in the identification and referral process and should be
tailored to specific audiences (e.g., educators, health care providers). During
the session, participants shared a number of materials they had developed
and suggested additional print and web-based resources they have found to be helpful in carrying out early identification activities. They stressed the
importance of using previously developed materials when possible and
sharing materials among state deaf-blind projects and with the broader field
of deaf-blindness. Literature on Early Identification
Research and Practices
In addition to the survey and focus group, the EIWG conducted an
extensive literature review to find information related to early identification
efforts both for children who are deaf-blind and for children with other types
of disabilities. The literature fell into two categories: information about early
identification initiatives occurring in other fields and promising practices to
improve early identification and referral.
Initiatives in Other Fields
Professionals who work with young children who have disabilities
other than deaf-blindness are also struggling with the need to find better
ways to identify and provide services for children who require early
intervention. For example, the standard for early detection of and
intervention for hearing loss outlined in Healthy People 2010 is as follows:
(a) screening for hearing loss by age 1 month,
(b) audiologic evaluation by
age 3 months, and
(c) enrollment in appropriate intervention services by age
6 months (U.S. Department of Health and Human Services, 2000).
Although
more than 95% of newborns in the U.S. are screened for hearing loss prior
to hospital discharge (Joint Committee on Infant Hearing, 2007) and newborn hearing screening programs have reduced the average age of
identification from 24–30 months to 2–3 months (Morton & Nance, 2006),
many of these infants are not being served by their states’ Part C programs.
In 2006, only 53% of infants with known hearing loss were enrolled in Part C
programs and, of these, approximately 30% were not enrolled until after 6
months of age (Centers for Disease Control and Prevention, 2008). A survey
by the National Center for Hearing Assessment and Management (NCHAM)
found that only 57% of state early hearing detection and intervention (EHDI)
coordinators reported that they had “good or excellent coordination and
cooperation” with their state’s Part C program (White, 2006). NCHAM’s
director Karl White has written of the need for EHDI programs to find ways
to improve collaboration with their state’s Part C programs and for EHDI
programs and other stakeholders (e.g., parents, audiologists, primary care
physicians) to work with their Part C programs to establish well-defined
eligibility criteria for deaf and hard-of-hearing children (2006).
Other groups are working to improve the identification of infants with
vision loss. A national registry for children (birth to age three) with severe
uncorrectable visual impairments, called Babies Count, has been established
to collect data about the characteristics of this population (Hatton, Schwietz,
Boyer, & Rychwalski, 2007). Information generated by the registry is likely
to be of help to professionals working to better identify children who are
deaf-blind. A recent report (Hatton et al., 2007) on 2,155 children included
in the registry noted that the most common types of vision loss were cortical
visual impairment (CVI), retinopathy of prematurity, and optic nerve hypoplasia, with CVI being diagnosed later (mean age at diagnosis 7.6
months) than the other two conditions. Another interesting finding from the
report is that 68% of the children showed evidence of developmental delay
or additional disabilities. Early identification of children with disabilities is a primary
responsibility of pediatricians and other health care professionals who care
for infants. In a 2007 policy statement, the Joint Committee on Infant
Hearing (JCIH) emphasized the important role that pediatricians and other
practitioners play in the process of early hearing disability detection and
intervention. The statement includes a recommendation that “every infant
with a confirmed hearing loss should have an evaluation by an
ophthalmologist to document visual acuity and rule out concomitant or late
onset vision disorders” (p. 908). A 2006 survey of primary care physicians,
however, found that only 1% reported referring children with hearing loss to
ophthalmologists (Moeller, White, & Shisler, 2006). Other recommendations
by the JCIH (2007) relevant to efforts to improve early identification of
infants who are deaf-blind include the following: (a) medical evaluation of
infants with confirmed hearing loss in order to determine its etiology,
identify related physical conditions, and provide recommendations for
treatment and referral to other services; and (b) review of medical and
family history for the presence of factors that indicate a risk for delayed onset or progressive hearing loss.
The American Academy of Pediatrics Council on Children with
Disabilities (2007) has also highlighted the important role that pediatric health care practitioners play in the process of early intervention and referral
of children who have, or are at risk for, disabilities. Key recommendations
from a recent policy statement (Council on Children with Disabilities, 2007)
include the following: (a) surveillance and screening of all infants to identify
disabilities or risk factors for delayed development, (b) prompt referral of
these children to early intervention services, and (c) being aware of child
and family services and resources available in the community and helping to
coordinate the health component of these services.
Promising Practices
A goal of the literature review was to identify promising practices and
strategies to help the EIWG as it partners with other entities to develop
plans to improve early identification of children who are deaf-blind. Within
the field of deaf-blindness, Deborah Chen of California State University,
Northridge, has highlighted the importance of educating early
interventionists (1997, 1998), and educators who work with children who
are deaf or hard or hearing (2004) to understand deaf-blindness and
recognize its associated signs and risk factors. However, most of the
practices and strategies identified in the review are from outside of the field
of deaf-blindness. As was found with the focus group of state deaf-blind
project personnel, most published strategies involve forming positive
relationships with potential referral sources and designing high quality public
awareness and referral materials.Increasing referrals from health care providers. Researchers at
TRACE (Tracking, Referral, and Assessment Center for Excellence) at the Orelena Hawks Puckett Institute have conducted a number of research
syntheses investigating strategies to change physicians’ referral and
prescribing practices, and they have made recommendations about the
applicability of these strategies for use by early intervention programs to
increase the number of referrals they receive from health care providers.
Dunst and Gorman (2006b) synthesized 42 studies of interventions intended
to increase the rate and pattern of referrals by primary care physicians to
specialists. They found that those most likely to be effective involved
frequent face-to-face contact between physicians and program
representatives, supported by written materials (e.g., program brochures,
referral guidelines). Passive distribution of materials in the absence of face-to-face contact was not found to be effective.
Another synthesis analyzed 38 studies that evaluated characteristics
of academic detailing, an educational outreach practice designed to influence
physicians’ prescribing practices (Clow, Dunst, Trivette, & Hamby, 2005).
Although it is most commonly used by pharmaceutical companies, Clow and
colleagues believe that academic detailing strategies hold promise as a
means of increasing referrals by physicians to early intervention services. As
with the study by Dunst and Gorman (2006b), this synthesis highlighted the
effectiveness of regularly scheduled visits to physicians’ practices by
program representatives, supported by concise written and illustrated
program materials (e.g., brochures). Other effective characteristics of
academic detailing include emphasizing the benefits of referral in a way that
is clear, concise, focused, and credible (e.g., referencing authoritative sources like the American Academy of Pediatrics) and providing timely and
relevant feedback about the referred children to physicians who do make
referrals. The importance of timely feedback to physicians regarding the
children they refer was also highlighted by a separate synthesis (Dunst &
Gorman, 2006a). Dunst and Clow (2007) found that most Part C program child find
activities do not conform to the strategies described above. Fifty-three
percent of child find activities involve distribution of materials or public
awareness campaigns, while strategies likely to be more effective such as
outreach to referral sources and organizational collaborations constitute only
10% and 9% of activities, respectively. A useful outcome of this study was
the development of a coding system that can be used by states or early
intervention programs to ascertain whether their child find strategies are
likely to be effective. It evaluates activities based on specific characteristics
(e.g., type of intervention). TRACE has also created Practice Guides to help
early intervention programs work more effectively with physicians to
increase referrals (Dunst, 2006; Dunst, Trivette, & Hill, 2007).
Creating materials. Although the above-mentioned studies suggest
that distribution of materials in the absence of face-to-face contact is an
ineffective strategy for increasing physician referrals, materials about a
program’s services and supports are important for reinforcing information
provided during personal contacts with physicians (Clow et al., 2005), and
they provide important information to families as well as to health care
professionals. A study by Trivette, Rush, Dunst, and Sheldon (2006) found that postcards describing an early intervention program’s services and
supports sent by an early intervention program to parents of young children
did significantly increase referrals by parents themselves, so it is possible
that passive distribution of materials may have some effect with groups
other than physicians. Several studies have looked at characteristics of successful program
materials. Davis and colleagues (2006) conducted a series of focus groups
with parents, health care providers, and state newborn-screening
professionals.Parents and professionals identified that written information
should (a) be user-friendly and easy-to-read, (b) avoid excessive detail, and (c) highlight information that is relevant and practical. Parents also said that
they want to receive information in person from a trusted health care
provider in combination with a brochure they can take home.
An evaluation of parent education brochures developed by state
newborn-screening programs (Arnold et al., 2006) found that the level of
reading difficulty of most of the brochures was too high and nearly all could
be made more user-friendly. As part of this study, the authors developed an
evaluation instrument consisting of 22 characteristics of user-friendly
materials categorized by layout, illustration, clarity of presentation, and
cultural appropriateness, which may be useful to anyone developing
publications of this type. Future Directions
Having completed the state deaf-blind project survey, the focus group
session with state deaf-blind project personnel, and an extensive literature review, NCDB’s Early Identification Work Group will now use what we have
learned to design and initiate activities to assist state deaf-blind projects to
improve early identification and subsequent referral to state deaf-blind
projects. These activities fall into the following two categories:
(a) development of a model framework for states to use to analyze their
early identification efforts and determine specific strategies to improve early
identification, and (b) form relationships with professionals and agencies
involved in early identification efforts in other disciplines to find ways to
improve the identification of children with disabilities during infancy.
The model development project will involve the creation and testing
of a framework that will have three primary components: (a) a process to
determine whether children with deaf-blindness are under-identified in a
specific state, (b) analysis of possible causes of under-identification if it is
determined to be occurring, and (c) strategies to improve identification that
will address any identified causes. We plan to develop and test the model
during the 2009–2010 school year and revise and implement the model with
additional states during the 2010–2011 school year. An application process
will be used to recruit state deaf-blind projects to participate in this project.
In addition to the model development project carried out with state
deaf-blind projects, NCDB will also seek to join forces with national partners
such as the National Center for Hearing Assessment and Management, the
Early Hearing Detection and Intervention Program at the Centers for Disease
Control and Prevention, the Babies Count Project, and the National Early
Childhood Technical Assistance Center. By partnering with other entities, we hope to raise awareness of the importance of early identification of children
who are deaf-blind and to share knowledge and strategies that will improve
identification of all children with disabilities.
The early identification of children with combined vision and hearing
loss will increase opportunities for families and early intervention personnel
to connect with their state deaf-blind projects, not for the purposes of
placing a “label” on a child but to provide timely early intervention and
technical assistance. Referral to state deaf-blind projects will ensure that
each child is counted and that each family has access to technical assistance
designed to provide the specialized resources and support needed for their
child.Appropriate early intervention services help maximize learning during
a child’s critical early years and lead to improved physical, communication,
cognitive, social, and emotional development. These are outcomes that NCDB is committed to achieving through its focus on early identification and
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Arnold, C. L., Davis, T. C., Frempong, J. O., Humiston, S. G., Bocchini, A.,
Kennen, E. M., et al. (2006). Assessment of newborn screening
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Calderon, R., & Naidu, S. (2000). Further support for the benefits of early
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Chen, D. (1997). Identifying infants who are deaf-blind. In D. Chen (Ed.),
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Cole, E. B., & Flexer, C. (2007). Children with hearing loss: Developing
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National Consortium on Deaf-Blindness [NCDB]
June 2009
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