BILL ANALYSIS
SENATE HEALTH
COMMITTEE ANALYSIS
Senator Elaine K. Alquist, Chair
BILL NO: AB 2072
A
AUTHOR: Mendoza
B
AMENDED: June 9, 2010
HEARING DATE: June 23, 2010
2
CONSULTANT:
0
Orr/
7
2
SUBJECT
Hearing screening: resources and services.
SUMMARY
Requires parents of all newborns and infants diagnosed with
a hearing loss to be provided specified information on
communication options for children with hearing loss.
CHANGES TO EXISTING LAW
Existing federal law:
Establishes the Individuals with Disabilities Education Act
(IDEA) which governs how states and public agencies provide
early intervention, special education, and related services
to children with disabilities. It addresses the educational
needs of children with disabilities from birth to age 21.
Part C of the IDEA requires that infants and toddlers with
disabilities receive early intervention services from birth
through age 3. These services are provided according to an
Individualized Family Service Plan (IFSP).
Existing state law:
Establishes the Children's Medical Services (CMS) Branch
within the California Department of Health Care Services
Continued---
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(DHCS), which is responsible for implementing a statewide
comprehensive Newborn Hearing Screening Program (NHSP). The
NHSP helps identify hearing loss in infants and guide
families to the appropriate services needed to develop
communication skills.
Establishes the Newborn and Infant Hearing Screening,
Tracking, and Intervention Act to provide early detection
of hearing loss in newborns and provide confirmatory tests,
multidisciplinary evaluation, and intervention services at
the earliest opportunity for children who fail a hearing
screening, and their families. The Act requires every
general acute care hospital with licensed perinatal
services to offer every newborn a hearing screening test
for the identification of hearing loss, as specified, and
provide written information on the availability of
community resources and services for children with hearing
loss to the parents of those who are diagnosed with a
hearing loss.
Establishes the California Early Start Intervention
Services Act, commonly known as the Early Start program,
under the California Department of Developmental Services
(DDS) which provides various early intervention services
for infants and toddlers who have disabilities to enhance
their development and to minimize the potential for
developmental delays.
Requires DHCS to establish a system of early hearing
detection and intervention centers according to standards
by the California Children's Services Program (CCS) that
provide technical assistance and consultation to hospitals
with hearing screening programs. Each center is
responsible for a separate geographic catchment area of the
state. Each center maintains a database of all newborns and
infants screened in the catchment area, and is required to
ensure appropriate follow-up for infants with abnormal
hearing screens, including diagnostic evaluation and
referral to intervention service programs if necessary.
Requires that parents of all newborns and infants diagnosed
with a hearing loss be provided written information on the
availability of community resources and services for
children with hearing loss. Information shall include
listings of local and statewide nonprofit deaf and
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hard-of-hearing consumer-based organizations, parent
support organizations affiliated with deafness, and
programs offered through the Department of Social Services
(DSS) Office of Deaf Access, DDS, and the California
Department of Education (CDE).
Establishes the Genetic Disease Testing Fund in the State
Treasury, which is used to fund the newborn screening
program.
The Lanterman Developmental Disabilities Act (AB 846), also
known as the Lanterman Act, is gives people with
developmental disabilities the right to services and
supports that enable them to live a more independent and
normal life. The Lanterman Act declares that persons with
developmental disabilities have the same legal rights and
responsibilities guaranteed all other persons by federal
and state constitutions and laws, and charges regional
centers with advocacy for, and protection of, these rights.
This bill:
Requires that parents of newborns and infants diagnosed
with hearing loss be provided written or electronic
information from the National Institute on Deafness and
Other Communication Disorders on American Sign Language,
total communication, cued Speech and Listening and Spoken
Language communication options for children with hearing
loss, including information about deaf and hard-of-hearing
organizations, agencies and early intervention centers, and
educational programs.
Stipulates that this information be provided by an
audiologist at a follow up appointment after diagnosis with
a hearing loss and also by a local Early Start Program
provider upon initial contact with the parents of a newly
diagnosed infant.
Provides that neither the state, an audiologist, nor Early
Start Program provider incur any cost for the
implementation of this bill.
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FISCAL IMPACT
This bill is keyed nonfiscal.
BACKGROUND AND DISCUSSION
This bill seeks to require that parents of an infant
diagnosed with hearing loss be provided with written or
electronic information on American Sign Language (ASL),
Total Communication, Cued Speech, and Listening and Spoken
language. This bill also seeks to clarify that parents
should be provided information about deaf and
hard-of-hearing organizations, agencies, early intervention
centers, and educational programs.
The author contends that parents of infants who are newly
diagnosed with hearing loss are often unfamiliar with the
resources and options that are available to them.
Specifically, the author claims that parents of newborns
diagnosed with hearing loss are not provided information on
all options and modalities for treatment and education of
their children. The author claims that over the past fifty
years, there have been numerous advances in technology as
well as growing awareness about the importance of
delivering services to children in a variety of
communication modalities to ensure their development and
ensure continued access to communication. This bill would
assure that parents are given unbiased information and
resources so that they can determine the most appropriate
treatment for their child.
Causes of hearing loss
According to the National Center for Health Statistics 36
million (17%) American adults have some degree of hearing
loss. About 1 in every 1,000 infants is born deaf. Another
1 in every 1,000 infants has a hearing impairment
significant enough to make speaking difficult. According to
the National Institute on Deafness and Other Communication
Disorders (NIDCD), more than half of all deafness or
hearing impairment is believed to have genetic cause(s).
About 90 percent of infants who are born deaf are born to
hearing parents. Sometimes babies and toddlers who may have
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had minimal or no hearing loss at birth show signs of
later-onset hearing loss. Additional screening is then
especially important, since hearing loss of any kind can
affect a child's speech and language development.
Sensorineural hearing loss (also called nerve deafness or
sensorineural deafness) is loss of hearing resulting from
problems in the inner ear, in the nerve from the inner ear
to the brain, or in the brain. In sensorineural hearing
loss, the damage lies in the inner ear, the acoustic nerve,
or both. Most physicians call this condition "nerve
deafness." Common causes of sensorineural hearing loss
include old age, Menieres disease, ototoxic medications
(such as high-dose aspirin or certain strong diuretics),
immune disorders, and noise exposure.
Conductive hearing loss is due to any condition that
interferes with the transmission of sound through the outer
and middle ear to the inner ear. This type of hearing loss
can be successfully treated in most cases. In central
hearing loss, the problem lies in the central nervous
system, at some point within the brain. Interpreting speech
is a complex task. Some people can hear perfectly well but
have trouble interpreting or understanding what is being
said. Although information about central hearing loss is
accumulating, it remains somewhat a mystery in otology (the
medical specialty of ear medicine and surgery).
Frequently, a person experiences two or more types of
hearing impairment, and this is called mixed hearing loss.
This term is used only when both conductive and
sensorineural hearing losses are present in the same ear.
Newborn screening
The California Newborn Hearing Screening Program (NHSP) was
established as a result of Assembly Bill 2780, Chapter 310,
Statutes of 1998. This law requires the establishment of a
comprehensive hearing screening program for the early
detection of hearing loss in newborns and infants, with
access to diagnostic evaluations and follow-up services,
and provisions for data collection and reporting. The
Department of Health Care Services (Department),
specifically the Children's Medical Services (CMS) Branch,
has responsibility for the implementation and oversight of
this program.
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The NHSP is a comprehensive and coordinated system of early
identification, tracking and monitoring of hearing
screening, access to diagnostic services, and coordination
of appropriate intervention and support services for
newborns and infants with hearing loss. The goal of the
program is to identify newborns and infants with a hearing
loss prior to three months of age and to implement
audiological and early intervention services by six months
of age.
Under the NHSP, all hospitals with licensed perinatal
services are required to provide inpatient hearing
screening for all newborns, with the parent's permission,
prior to hospital discharge. All infants receiving care in
an intensive care nursery or neonatal intensive care unit
must receive inpatient infant hearing screening services
prior to discharge. Inpatient infant hearing screening
includes a repeat hearing screen prior to discharge if the
newborn or infant did not pass the initial inpatient
hearing screening.
California has over 550,000 births per year. It is
anticipated that the NHSP will result in the identification
of an estimated 1,100 newborns and infants born each year
with a significant hearing loss who will be linked with
appropriate follow-up and early intervention services.
Existing law requires the Newborn Screening Program
(program) to provide continuous screening services to all
California births to protect the health and safety of the
newborns affected with preventable heritable disorders.
The program mandates that the operation of the program be
fully supported from the fees collected, therefore fees may
be adjusted as necessary. The total newborn screening
program fee is currently $102.75. The fees collected from
the hospital of birth are deposited in a special fund
called the Genetic Disease Testing Fund (GDTF). The GDTF
is used to pay expenses of program operations including
costs of supplies, forms, educational materials and
contracts with private vendors for laboratory analysis,
tracking of positive test results, data processing and fee
collection.
Hearing Coordination Centers (HCCs)
The Hearing Coordination Centers is a concept unique to
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California's newborn hearing screening program. The
functions of the Centers include: assisting hospitals to
develop and implement their screening programs, certifying
hospitals to participate as screening sites, monitoring
programs of the participating hospitals, assuring that
infants with abnormal hearing screenings receive necessary
follow-up including rescreening, diagnostic evaluation,
treatment, and referral to early intervention service
agencies, as appropriate providing information to families
and providers so they can more effectively advocate with
commercial health plans to access appropriate treatment.
Each HCC has a geographic service area for which it is
responsible. In states without coordinated tracking
systems, up to 50% of the infants who fail the inpatient
screen do not receive the necessary services to determine
if a hearing loss is present. It is essential that infants
who do not pass the screening tests receive prompt
evaluation and intervention if appropriate. Otherwise, the
benefit and purpose of early screening and identification
is lost.
Early Start Program
In 1998, California passed Assembly Bill 2780, investing
approximately six million dollars in the development and
implementation of the California Newborn Hearing Screening
Program (NHSP). The program established a comprehensive,
coordinated system of identifying infants with hearing loss
and linking them with appropriate services, including the
Individuals with Disabilities Education Improvement Act
(IDEA) Part C early intervention services (called Early
Start in California).
Consequently, the Parentlinks program, funded through the
California Endowment and sponsored by the California
Coalition of Agencies Serving the Deaf and Hard of Hearing,
was established to provide intensive parent-to-parent
support to enable parents to become knowledgeable about
issues related to hearing loss, to advocate for the rights
of their children, and to make informed decisions about
raising their children. Parentlinks employed parent mentors
who provided families with specific information about
hearing loss, and linked families with the local Early
Start program.
Communication modalities and visual languages
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While English and Spanish are spoken languages, American
Sign Language is a complete visual language in which the
brain processes linguistic information through the eyes.
The shape, placement, and movement of the hands, as well as
facial expressions and body movements, all play important
parts in conveying information. ASL has its own grammar,
word order, and sentence structure. Persons using ASL can
share feelings, jokes, and complete ideas using ASL. Like
any other language, ASL must be learned, and any child can
learn ASL as a first language.
ASL is not a universal language; each country has its own
sign language, and regions have dialects, much like the
many languages spoken all over the world. Like any spoken
language, ASL is a language with its own unique rules of
grammar and syntax and grows and changes over time.
According to the National Association of the Deaf (NAD),
ASL is used predominantly in the United States and in many
parts of Canada. ASL is accepted by many high schools,
colleges, and universities in fulfillment of modern and
"foreign" language academic degree requirements across the
United States.
According to a January 2008 policy statement of NAD, deaf
infants and children should be given the opportunity to
acquire and develop proficiency in ASL as early as
possible. NAD takes the position that as a fully accessible
visual language, ASL should be made available to every deaf
infant, in addition to any assistive technologies that may
be used to take advantage of the deaf infant's access to
the language(s) used by their families and care providers.
According the Clearinghouse on Disabilities and Gifted
Education, Total Communication is an approach to deaf
education that aims to make use of a number of models of
communication such as sign language, oral, auditory,
written and visual aids, depending on the particular needs
and abilities of the child. Total Communication is a
philosophy rather than a methodology. As a result, the
implementation of Total Communication philosophy with one
child could look entirely different than its
implementation with another child.
According to the National Cued Speech Association (NCSA),
Cued Speech is s system of communication used with and
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among deaf or hard of hearing people. NCSA maintains that
it is a phonetic-based system which makes traditionally
spoken languages accessible by using a small number of
handshapes (representing consonants) in different locations
near the mouth (representing vowels), as a supplement to
lipreading.
There are other visual languages as well, including
Manually Coded English (MCE), Conceptually Accurate Signed
English (CASE). There are also additional visual language
building blocks that can assist in communication such as
finger spelling and speech (lip) reading.
Families who have children with hearing loss often need to
learn special skills to help their children learn language.
These skills can be used together with hearing aids,
cochlear implants, and other devices that help children
hear.
Cochlear implants and other amplification systems
A cochlear implant is a small, complex electronic device
that can help to provide a sense of sound to a person who
is profoundly deaf or severely hard-of-hearing. According
to the Alexander Graham Bell Association for the Deaf and
Hard of Hearing (AG Bell), cochlear implants were developed
in the 1970s to help profoundly deaf individuals who gained
little or no benefit from hearing aids. When hearing is
functioning normally, complicated parts of the inner ear
convert sound waves in the air into electrical impulses,
which are sent to the brain and recognized as sound. A
cochlear implant works in a similar manner. When
surgically implanted behind the ear, the electronic device
is able to bypass damaged hearing cells and stimulate the
auditory nerve to restore partial hearing. Cochlear
implants provide enhanced sound detection and the potential
for greater speech understanding.
The implant consists of an external portion that sits
behind the ear and a second portion that is surgically
placed under the skin. An implant has 1) a microphone,
which picks up sound from the environment; 2) a speech
processor, which selects and arranges sounds picked up by
the microphone; 3) a transmitter and receiver/stimulator,
which receive signals from the speech processor and convert
them into electric impulses; and 4) an electrode array,
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which is a group of electrodes that collects the impulses
from the stimulator and sends them to different regions of
the auditory nerve. The implant is turned on by an
audiologists four to six weeks after surgery, and may
require many adjustments thereafter.
Cochlear implants, coupled with intensive postimplantation
therapy, may help young children to acquire speech,
language, and social skills. Most children who receive
implants are between two and six years old. Early
implantation provides exposure to sounds that can be
helpful during the critical period when children learn
speech and language skills. It may be recommended that a
child with an implant get training with a speech language
pathologist, who teaches children how to learn speech and
language. This training can help a child understand the new
sounds that he or she hears with a cochlear implant.
Cochlear implants can cost between $40,000 and $90,000.
Many insurance companies and state Medicaid programs help
pay for the costs. According to the Food and Drug
Administration (FDA), as of April 2009, approximately
188,000 people worldwide have received implants. In the
United States, roughly 41,500 adults and 25,500 children
have received them. There are risks associated with
cochlear implants, and the extent that an implant will lead
to full hearing in a child is not predictable.
There are many other devices available to assist children
and adults with hearing loss. Some of these include hearing
aids, FM systems, telephone amplifiers, flashing and
vibrating alarms, Infra red listening devices, TTY (Text
Telephone or teletypewriter), and more.
Not all technological developments have been universally
accepted by the deaf community. The cochlear implant
inspires both strong support and vehement opposition. Among
deaf people, the implants are generally hailed as a boon
for individuals who lost their hearing later in life, but
their use for deaf children became controversial. The
effectiveness and risks of the implants are a major part of
the debate, but there is an additional conflict between
those who view deafness as a physical impairment and those
who see it as a valued part of cultural identity. As
cochlear implant surgery has become more common in deaf
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children and implants have become more widely used, the
emphasis of the debate has changed. The focus now is on the
deaf child's exposure to visual language and the type of
support and educational services the child receives.
Educational achievement of deaf and hard of hearing pupils
According to CDE, the deaf students who are most likely to
succeed academically are those children who are born to
deaf parents. Children born into homes where they have
access to the visual language of their families (typically
ASL), acquire that language at the same rate that hearing
children of hearing parents acquire spoken language.
Because they enter school with age-appropriate language
skills, they are well prepared to develop literacy skills.
However, more than 90 percent of children with hearing loss
are born to hearing parents, most of whom have had no
previous exposure to deafness. For deaf and
hard-of-hearing children who are born to hearing parents,
research shows that the most important factors that will
lead to their success in school are: age of identification
and parent involvement. When a child's hearing loss is
identified by six months of age and the child and his
parents are enrolled in intensive and appropriate Early
Start services aimed at the development of language skills
(spoken and/or signed) that child is likely to acquire
language skills commensurate with his hearing peers and
cognitive abilities.
Audiologists scope of practice
According to the Academy of Doctors of Audiology, an
audiologist is a person who, by virtue of academic degree,
clinical training, and license to practice, provides an
array of services related to the identification, diagnosis
and treatment of persons with auditory and balance
disorders, and the prevention of these disorders.
Audiologists are independent practitioners who provide
services in hospitals, clinics, schools, and private
practices. The audiologist is responsible for the
evaluation and fitting of amplification devices, including
assistive listening devices. The audiologist determines the
appropriateness of amplification systems for persons with
hearing impairment, evaluates benefit, and provides
counseling and training regarding their use. They
prescribe, fit, sell, and dispense hearing aids and other
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amplification systems. In the NHSP, audiologists are most
often the provider that conducts follow up testing of
infants who do not pass their initial hearing screening
test, and ultimately issue the diagnosis of hearing loss.
The CDC includes audiologists among the professional
support network of a family of a child with hearing loss,
and recommends parents consult them for advice along with
other specified health and service providers.
Related bills
ACR 169 (Carter) of 2009 would proclaim the month of June
as Hearing Aid Awareness Month. Pending in the Assembly.
Prior legislation
AB 1307 (Buchanan) of 2009 would have required the
department to consider inclusion in the statewide screening
program of conditions recommended by the American College
of Medical Genetics (ACMG) or other specified entities. The
department would be required to adopt the recommendations
within one year of their publication unless the department
determines that screening for the recommended conditions is
not necessary for advancing newborn health and notifies
appropriate committees of the Legislature of that
determination. Pending in Senate Appropriations Committee.
SB 527 (Steinberg) of 2008, would have required the State
Department of Developmental Services to partner with at
least one regional center to implement a 2-year Autism
Spectrum Disorders Early Screening, Intervention, and
Treatment Pilot Program in at least 3 key geographic areas.
The pilot program would have established best practices for
early screening, diagnosis, referral, and treatment for
children with ASD. Vetoed by the Governor, who claimed the
provisions of the bill can be accomplished administratively
with funding from private, non-state general fund sources.
AB 2555 (Torrico) Chapter 245, Statutes of 2008, requires
the existing notice of parent rights and procedural
safeguards provided to parents or guardians of pupils with
disabilities to include information regarding the state
special schools for pupils who are deaf, hard of hearing,
blind, visually impaired, or deaf-blind.
AB 2780 (Gallegos), Chapter 310, Statutes of 1998. The
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Health Services Budget Act establishesd the Infant Hearing
Screening Program to provide hearing screening tests for
children at risk for deafness and a system to provide
follow-up and assessment services.
AB 1836 (Eastin), Chapter 1126, Statutes of 1994, expanded
legislative intent and made other changes related to
special education for hard-of-hearing and deaf pupils.
States intent that individuals with exceptional needs be
offered special assistance programs which take into
consideration, for hard-of-hearing or deaf children, the
individual's need for a sufficient number of age and
language mode peers and for special education teachers who
are proficient in the individual pupil's primary language
mode.
Arguments in support
The California Medical Association (CMA) believes it is
imperative that patients and their families receive
adequate information about a health condition and treatment
options in order to make informed decisions about their
health care and future treatment. This is especially
important for children who have been diagnosed with hearing
loss. CMA states that as long as parents are equipped with
unbiased, balanced, and accurate information about the
communication options available, they can discuss these
options with their child's health care team and make the
best decision for their child as to how he or she will
communicate with the world around them.
The California Academy of Audiology claims to be the
primary professional caregivers who treat hearing impaired
children, and wants to ensure that the parents of all
newborns diagnosed with a hearing loss will be provided
written information on all communication options for their
kids at the earliest appropriate time, so that they make
the best intervention decision possible.
California Lutheran University writes in support of this
bill citing their status as one of the few credentialed
program providers that prepare teachers for the deaf. They
claim that given the diversity of the deaf population of
students, it is imperative that all approaches are
presented equally to families. In no way does a
presentation to families of all options, settings, services
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and approaches denigrate or dismiss any other option,
language, cultural group, or approach. The more information
a family has, the better and easier their decision will be.
Arguments in opposition
California Educators of the Deaf believes this bill should
specify that information given to parents be vetted by
California stakeholders, including educators of the deaf
and hard of hearing, deaf community members, and parents.
They believe the California Department of Education should
be responsible for this. They also contend that the bill is
sponsored by directors of private oral education schools,
and that the broader deaf education community already
recognizes the variety of opportunities for deaf children.
The Greater Los Angeles Agency on Deafness believes that
providing information to parents of hearing loss is vital,
but believes AB 2072 as written is flawed and neglects key
components to insure that parents receive thorough and
unbiased information. They believe the bill would bypass
the state's newborn hearing screening policies and that the
bill does not provide for any state accountability or
oversight.
ASL Rose opposes the bill and does not believe that early
identification of deaf newborns automatically yields
positive results in the majority of situations, nor that
auditory-verbal therapy has benefits for deaf children with
residual hearing.
PRIOR ACTIONS
Assembly Health Committee: 10-4
Assembly Floor: 57-7
COMMENTS
1. Suggested amendments. Both supporters and opposition
to this bill agree that any information provided to parents
of deaf children should be unbiased, based on scientific
facts, and come from a reliable, neutral third-party
source. To address this, the committee suggests amendments
to require that either DDS or CDE develop or approve the
use of standardized, objective pamphlet of information
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about communication options for children who are deaf or
hard-of-hearing, that is sufficient to allow the child'
parents to make an informed decision. This information
shall be decided upon by the department in conjunction with
a stakeholder panel, comprised of representatives of the
various communication options. The cost for developing the
pamphlet and conducting the stakeholder panel shall be
covered through the development of an additional state fund
to accept private donations for this purpose. The
provisions of the bill shall only be made operative after
sufficient funds have been collected to cover necessary
expenses.
POSITIONS
Support: California Coalition (sponsor)
American Federation of State, County and
Municipal Employees, AFL-CIO
(AFCSME)
Alexander Graham Bell Association for the Deaf and
Hard of Hearing (AG Bell)
Alexander Graham Bell Association for the Deaf
and Hard of Hearing,
California Chapter (CA AG Bell)
California Academy of Audiology (CAA)
California Association of Private Special Education
Schools (CAPSES)
California Association of Private School
Organizations (CAPSO)
California Department of Education (if amended)
California Hospital Association (CHA)
California Lutheran University
California Medical Association (CMA)
Children Specialty Care Coalition
Hearing Loss Association of California
Modern Deaf Communication
National Cued Speech Association
West Coast Cued Speech Programs
Several Individuals
Oppose: American Society for Deaf Children
Alliance for Language and Literacy for Deaf Children
(ALL for Deaf
Children)
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ASL Presents
ASL Rose
Alternative Solutions Center
California Association of the Deaf
California Deaf Newborn Identification & Advocacy
Stakeholder Coalition
(CENIAS)
California Educators of the Deaf
Center On Deaf Inland Empire Community
Coalition of Individuals with Individuals with
Cochlear Implants
Conference of Educational Administrators of Schools
and Program for the
Deaf, Inc.
Convo Communications
Deaf and Hard of Hearing Service Center, Inc.
Deaf Bilingual Coalition
Deaf Children First
Deaf Counseling Advocacy & Referral Agency (DCARA)
Deaf Hope
Deafhood Yoga
IMPACT
National Asian Deaf Congress
National Center on Deafness, California State
University Northridge
NorCal Services for Deaf and Hard of Hearing
Orange County Deaf Equal Access Foundation
Parent Links
Sacramento Valley Registry of Interpreters for the
Deaf
Signs for Intelligence LLC
Silicon Valley Independent Living Center
Special Education Local Plan Area Administrators
Tri-County GLAD
Western Interpreting Network (WIN)
Several individuals
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