ERIC EJ944989: Reaching Out to Families of Deaf and Hard of Hearing Children in Illinois: A Collaborative Effort

2011·0.51 MB·English

by  ERIC

Karen Aguilaris the
coalition director for
CHOICES for Parents, a
statewide coalition of
parents and professionals
that provides information,
REACHING OUT TO FAMILIES OF
support, and resources to
families whose children have DEAF AND HARD OF HEARING
a hearing loss.
CHILDREN IN ILLINOIS:
Marcia Breeseis the
a collaborative
outreach coordinator for the
Illinois School for the Deaf
(ISD), which provides
effort
technical assistance,
consultation, training, and
support to students with
hearing loss in Illinois.
By Karen Aguilar, Marcia Breese, Gail Olson, Cheri Sinnott, and Michele Westmaas
Gail Olsonis the program
coordinator for Hearing and
Vision Connections, a
statewide early
In Illinois, several organizations collaborate to provide a comprehensive
intervention training and
approach to family outreach for families of students who are deaf and
technical assistance
program specific to infants hard of hearing. Some of the agencies that work together in this effort
and toddlers with vision are CHOICES for Parents, Illinois Hands and Voices, Guide By Your
and/or hearing loss.
Side, Illinois Service Resource Center, Illinois School for the Deaf
Outreach, and Hearing and Vision Connections. This network of
Cheri Sinnottis the
director of the Illinois support provides such services and resources as parent-to-parent
Service Resource Center networking, in-home individual support, training, parent groups, and
(ISRC), a statewide agency
conferences.
in Illinois that provides
behavior support for
CHOICES for Parentsis a statewide coalition of parents and professionals that
students who are deaf and
provides parents of children who are deaf or hard of hearing with support, resources,
hard of hearing.
information, and advocacy. CHOICES for Parents provides one-on-one parent support
as well as activities throughout the year for parents and families.
Michele Westmaasis a
Through collaboration with the Illinois Deaf Latino Association, outreach and
trainer/consultant with both
support to Latino families is provided. A Deaf Awareness Day event and parent
the Illinois School for the
workshops occur annually, and sign language classes are taught in Spanish to parents
Deaf Outreach and
who primarily speak Spanish.
Hearing and Vision
The CHOICES for Parents READ Program ensures that children with hearing loss
Connections, planning
and their schools have books available to them. Through collaboration with the
statewide conferences for
American Library Association, Hall-Erickson and GES Exposition Services, CHOICES
parents of children with
for Parents distributes books throughout the state to programs and schools with deaf
hearing or vision loss.
and hard of hearing children to promote early literacy.
Children and Hearing Lossis a free resource manual that is filled with information
The authors welcome
about hearing loss, early intervention, technology, education, pediatricians, and more.
questions and comments
Produced by CHOICES for Parents, the resource is available in English and Spanish.
about this article at
Every spring on Early Hearing Detection & Intervention (EHDI) Day, CHOICES for
[email protected],
Parents honors those who have gone above and beyond in infant identification and
marcia.breese @illinois.gov,
follow-up. CHOICES for Parents works with the Illinois Governor’s Office to proclaim
[email protected],
EHDI Day annually in the state. During the event, parents are invited to share their
[email protected],michele.westmaas
stories on receiving the news of their children’s hearing loss and the support that they
@illinois.gov, respectively.
received.
Photos courtesy of Carrie Balian
6 ODYSSEY 2011
As a result of CHOICES for Parents’ Specialized Care for Children, the Above left: During Guide By Your Side’s
collaboration with Illinois Hands & Illinois Department of Public Health, Family Fun Day event, families participated in
Voices and the Illinois EHDI program, and the Illinois Department of Human games, face painting, and other fun activities.
the Illinois Guide By Your Side Program Services. In addition, the program
Above right: During a family social event for
was implemented in 2009. Illinois collaborates with numerous groups to
children with hearing loss, children had the
Hands & Voices is a parent-driven increase newborn hearing follow-up,
opportunity to meet Monkey Joe.
organization dedicated to supporting diagnosis, intervention, parent support,
families who have children who are deaf and continued surveillance of hearing
and hard of hearing without a bias prior to entering school. to reach out to other parents and explained
toward communication modes or ways that I could network with them. I
methodologies. Illinois families receive Guide By Your Sideprovides started a deaf coffee chat in my town for
support in order to improve unbiased emotional support and people to come together to learn sign language
communication access and educational resources by trained parent guides to and it’s been a great way to meet other
outcomes for their children through families with children who have a parents who have deaf or hard of hearing
workshops, parent gatherings, and the hearing loss. Parent guides are parents kids!”
national newsletter, Hands & Voices whose children have hearing loss with Another parent said, “The Guide By
Communicator. varying modes of communication and Your Side mentor program has helped me
The Illinois EHDI program works to educational paths chosen. Parent guides tremendously! My relationship with my
implement mandated newborn hearing represent different cultures and mentor started when I was literally in a
screening no later than 1 month of age, ethnicities; are deaf, hard of hearing, or ‘survival mode’ dealing with the news of my
diagnosis no later than 3 months of age, hearing; and are, in many cases, son's hearing loss. Over a period of six months,
and intervention no later than 6 months bilingual. In Illinois, this fills a much my mentor has taken the time out to speak to
of age. The EHDI program encompasses needed gap of individual parent-to- me about everything that was on my mind.
outreach and support to parents, parent support. We talked about how to recognize personal
hospitals, family physicians, state What do parents have to say about emotions, deal with close friends who have not
agencies, and providers regarding the Guide By Your Side? One parent experienced a similar life-changing event and
diagnosis and follow-up of children with commented,“I’m learning sign language to hence cannot connect on the same level, build a
hearing loss. The Illinois EHDI program communicate with my son and I wondered if stronger relationship with the spouse and
state partners are the University of there were other parents out there who wanted allow one another the time to accept the new
Illinois at Chicago Division of to learn, too. My parent guide encouraged me challenge in our life. As time progressed, our
2011 ODYSSEY 7
conversations also took on a new life. families with return postage
We talked about schooling options, included.
various auditory therapy methods While providing behavior support
widely used and the benefits and flaws to schools, ISRC assists with the
of each, American Sign Language and development of Positive Behavior
other resources that are available to the Interventions and Supports (PBIS) for
parents. My mentor sends me regular deaf and hard of hearing programs.
updates on upcoming national or state Parent involvement is a significant
events on hearing loss and we have even aspect of PBIS, and ISRC encourages
talked about the cultural dimension programs to have a parent member
around hearing loss and helpful ways on the PBIS Leadership Team, to
to deal with it. I feel I have a friend I incorporate home-school activities
can talk to any time; someone who gives and behavior incentives, and to invite
me a very unbiased view about families to PBIS annual kickoff
everything.” events.
Individual support for families of
The Illinois Service students who are experiencing
Resource Center (ISRC)is behavior challenges at home is
a component of the Illinois State provided by ISRC. A member of the
Board of Education’s Illinois team visits the family and assists in
Statewide Technical Assistance the development of a Home-School
Center. ISRC provides behavior Team. This team identifies behavior
support for schools and families of support strategies that can be consistent
students who are deaf and hard of at both school and home.
hearing. Meaningful parent involvement Meaningful parent The ISRC website (www.isrc.us)
in a child’s education can be an includes a page specifically for parents.
involvement in a
important factor in student behavior. The page includes contact information
In an effort to address the issue of for the parent facilitators and helpful
child’s education
increasing meaningful parent information such as tip sheets for
involvement, ISRC has hired five summer survival, potty training, basic
can be an important
regional parent facilitators. The parent sign language, and sample behavior
facilitators can assist with locating factor in student charts.
speakers for parent groups, help connect Each year ISRC sponsors a bus trip for
parents with resources such as service behavior. families that would like to visit the
providers and educational programs, help Illinois School for the Deaf (ISD).
parents learn about Deaf culture, and Families who are considering sending
facilitate connections between home and their child to the school but have never
school and parent to parent. had an opportunity to visit are able to
Parent facilitators also coordinate a that in addition to being deaf the participate in this one-day free bus trip
Parent Café, at which parents have the children also have a secondary challenge and experience a day at the residential
opportunity to come together while their such as autism, Down syndrome, school.
children are provided with an activity. learning disabilities, vision impairment,
The Parent Cafés take place on the same or behavior challenges. One Family Illinois School for the Deaf
date in all five regions of the state. Network member said, “Some of these (ISD) Outreachis the statewide
Another resource for parent-to-parent children are so unique, it is rare to find resource center which supports the
support is the ISRC Family Network. another parent with a similar experience.” education of students who are deaf or
ISRC maintains a directory of parents The ISRC Resource Library includes hard of hearing from birth to age 21.
and families with children who are deaf over 75 items specifically tailored to Utilizing the wealth of knowledge and
and hard of hearing. ISRC parent parent/family needs. This is in addition experience related to hearing loss and
facilitators are able to connect parents to over 1,000 other items with a focus on related issues available at ISD, ISD
with other parents facing similar deafness and behavioral issues. Families Outreach offers consultation and
circumstances, such as parents of may request items via phone, e-mail, or technical assistance free of charge to
children who are “deaf plus,” meaning fax, and the items are mailed to the teachers, parents, support staff, and
88 ODYSSEY 2011
other service providers who work with and abilities are available to high school with hearing loss, vision loss, and dual
children who are deaf or hard of hearing. students. Evaluations are free; however, sensory impairment. Free quarterly
ISD Outreach services are free. Parents the family or referring school is newsletters offer current information
often request in-service presentations responsible for transportation, meals, related to hearing and vision loss in
for educators in general education and lodging, if needed. young children.
classrooms as well as observations, ISD Outreach offers a new Cochlear •Networking opportunities for
phone or e-mail consultations, and Implant Program to support the developmental therapists hearing and
written correspondence. Free trainings education of students with cochlear developmental therapists vision, early
are provided upon request to parent implants by providing training and intervention providers specially
groups on a variety of topics related to technical assistance specific to cochlear trained to meet the needs of young
hearing loss. implants. These services are provided by children with hearing or vision loss,
Parents have fewer opportunities for a person who is a late deafened adult and and deaf mentors, trained adults with
summer activities for their children with cochlear implant user. General cochlear hearing loss who provide support and
hearing loss, and that can cause stress. implant information is also available on information for families of young
ISD Outreach offers summer camp the ISD Outreach website. children with hearing loss. HVC also
opportunities for students with hearing In addition to the services offered to provides support for the credentialing
loss, an open house, “Taste of ISD” for parents, ISD provides a variety of of service providers in order to ensure
parents of ISD students, and collaborates services for educators and other adequate providers are available to
on parent conferences held throughout professionals. For information about the meet the needs of children throughout
full range of services offered by ISD the state.
Outreach, visit the website at
The HVC website (www.morgan.k12.
http://morgan.k12.il.us/isd/outreach_
il.us/isd/hvc) offers newsletters, resource
services.html.
guides, and a training calendar as well as
vision and hearing screening tools and
Hearing and Vision
early intervention service guidelines
Connections(HVC) is a statewide
related to hearing and vision
training and technical assistance
impairment. HVC works closely with
program serving infants and toddlers
the Bureau of Early Intervention to
who are deaf, hard of hearing, or visually
create and maintain the screening tools
impaired. HVC is funded by the Illinois
and service guidelines ensuring that
Department of Human Services, Bureau
young children with hearing or vision
of Early Intervention.
loss are identified and receive
E
C
AR HVC offers: appropriate early intervention services as
E
P
RT- •Free training opportunities soon as possible.
U
CO throughout the state for early There are many organizations in
E VAL intervention service providers and Illinois supporting parents on their
N
ERI collaborates to provide annual journey of raising a child with hearing
H
AT conferences for parents of children loss. However, instead of this being seen
C
Y
O B with hearing and vision loss. Parent as a confusing overlap, all of these
HOT conferences are held in the northern, organizations are strong supporters of
P
central, and southern parts of the each other, working collaboratively for
the state. Another resource for parents of
state. the benefit of the child and family
children newly diagnosed with hearing
•Resource and referral services to help needing support.
loss is a one-week institute for parents of
early intervention service coordinators When hearing parents find out that
preschool children.
find vision and hearing specialists to their child is deaf or hard of hearing, the
Free assessments to identify
serve the children on their caseloads. support of professionals and other
educational and vocational needs are
In addition, HVC answers families’ parents is critical in navigating this new
provided by the ISD Evaluation Center.
and providers’ questions specific to path. By reaching out to these parents,
Evaluations and assessments are
hearing and vision in infant/toddler and to parents who themselves are deaf
available in the areas of school
development or service delivery. or hard of hearing, these agencies in
psychology, audiology, and
•Many free resources to parents and Illinois provide not only a network, but
communication skills. Vocational
providers. Resource guides are a safety net for families.
evaluations that identify career interests
available for parents of young children
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