Archive for September 25, 2017

A New Model of Deaf and Hard of Hearing Infusion

September 25, 2017

Towards a New Model for the Deaf Infusion of Leadership in EHDI Services

By Christine Yoshinaga-Itano, Ph. D.

christine itano

The following is a Synopsis of the Libby Harricks Memorial Oration number 17 given in Australia in June 2015. The Deafness Forum of Australia granted permission for this printed synopsis.  

 

Imagine a world where a family with a newly diagnosed child with hearing loss is provided services by a pediatrician who is him/herself deaf.

Today, we have some examples of individuals with this level of education, but, if we are successful, these numbers will increase. Perhaps the Ear, Nose and Throat physician is also deaf or hard of hearing and the audiologist who diagnoses the hearing loss is deaf or hard of hearing. The parents are contacted by an early interventionist who is deaf or hard of hearing. The psychologist, social-worker, or counsellor who assesses the family’s child or who assists them through their adaptation to the diagnosis is deaf or hard of hearing. Some of these individuals communicate exclusively through spoken language. Others switch from spoken language to sign language depending upon the conversational partner. Others communicate exclusively through sign language.

In this imagined world, parents would navigate through the health and educational systems being provided services by individuals who are themselves deaf or hard of hearing, as well as professionals who are hearing. They are interacting with these individuals, not because they are deaf or hard of hearing, but because they have a significant service and expertise to provide the family.

Thus, we arrive at a concept of infusion into the fabric of the entire system. Many parents who have newborns diagnosed with hearing loss have never met or interacted with an individual who is deaf or hard of hearing. They may have only stereotypes of what it means to be deaf or hard of hearing. Their adaptation to the diagnosis which often involves grief and mourning is influenced by their previous experience with deafness and hearing loss. If parents’ initial interactions with the newborn hearing system happen to be with individuals who are deaf or hard of hearing, there to provide them with professional expertise, they will focus not on the deafness/hearing loss, but on the person who is supporting them. Knowledge about what a child who is deaf or hard of hearing could become and the things s/he could accomplish, can dramatically alter the sequence of the process of grieving.

As children who have benefited from early hearing detection and intervention (EHDI) systems grow up, there are an increasing number of them who are choosing to participate in the system as professionals in a variety of capacities. There are, for example, increasing numbers of children who are deaf or hard of hearing, users of hearing aids and cochlear implants, who have chosen to become audiologists. Some have chosen to become early intervention providers or teachers of the deaf. There is a growing number of individuals who are deaf or hard of hearing who have become allied health professionals, physicians, psychologists, social workers, teachers, pharmacists, dentists, occupational therapists, and speech/language therapists.

The journey for families typically starts at the referral from the universal newborn hearing screening (UNHS) in the hospital to either an outpatient re-screen or a diagnostic audiological evaluation. The anxiety of families arises when they are told that the child did not pass the hearing screening and increases at each level of the system and with the time that elapses until the family receives more information. For the family who is greeted by an audiologist who is a hearing aid, or a cochlear implant user or has chosen a visual communication without the use of amplification, the family begins, often for the first time, to establish an idea of what it means to grow up deaf or hard of hearing.

 

Deaf/Hard of Hearing Infusion in an existing EHDI system

In one metropolitan hospital system, two of the audiologists have congenital hearing loss. Families whose infants are tested by one of these audiologists would have the confirmation that the child is deaf or hard of hearing delivered by a professional who is deaf or hard of hearing. Immediately after the diagnosis from any audiologist at this hospital, the parents go to an office at the same hospital, where they are introduced to a professional who is profoundly deaf and who has cochlear implants but who used hearing aids for most of her life. She has worked as an early intervention professional for families who have infants and toddlers who are deaf or hard of hearing for over 25 years. This experienced professional provides counselling services immediately after the diagnosis of hearing loss to a significant proportion of families with newborns identified after UNHS in the state of Colorado, because she works in a pediatric hospital that is a center for excellence for pediatric patients with hearing loss.

Such interactions create a new “normal” for parents of newly-identified infants/children who are deaf or hard of hearing. Their perspective about deafness and hearing loss is now impacted by an individual who provides them support and professional services, knows what it is like to grow up as a deaf/hard of hearing individual and what it is like to live and work as an adult who is deaf.

If the family lives in the largest metropolitan city in this state, the first contact in early intervention is an educator of the deaf who specializes in early childhood deafness. She has a Master’s degree in deaf education and also in Spanish. She grew up with a bilateral severe-to-profound hearing loss and received a cochlear implant as an adult. She is fluent in sign language, spoken English and spoken Spanish. She has extensive experience working with families with newly identified children who are deaf or hard of hearing. She is a Colorado Hearing Coordinator who is designated as the first contact for families in the most highly populated metropolitan area in the state.

This Colorado Hearing Coordinator provides families with the many options that are available for their family, including early intervention services focusing on language, cognition and social-emotional development and if the family chooses, sign language instruction in the home from an instructor who is deaf or hard of hearing and a native and/or fluent signer. These services can be provided weekly in the home, in addition to other intervention services and the family may include other members of the family or care providers

A parent of an early-identified child in the state of Colorado provided this quote: “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 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.”

In all of the scenarios described above, the professionals who are deaf or hard of hearing, have professional training and experience in the professional service that they are providing to the family. In some cases, unless the professional identifies her/himself as a person who is deaf or hard of hearing, the family may not be aware or may not immediately realize that the professional is an individual who is deaf or hard of hearing.

While it is unlikely that any one family would see all of these professionals who are deaf or hard of hearing, the odds that they will encounter at least one of these professionals is quite high. On average, the families in Colorado will have interacted meaningfully with multiple and diverse professionals who are deaf or hard of hearing in the first few years of life.

In each of these situations, the family has an opportunity to ask these professionals questions about their personal stories and what it was like to grow up deaf or hard of hearing. Just as would occur with a hearing child, the family and child are exposed to a vast variety of diverse individuals, thus, providing a perspective early in the child’s life that there is a world of opportunities available, things they can anticipate as their child grows up, as well as challenges that families and children face.

Deaf/Hard of Hearing Role Models

In some systems, individuals are trained as role models.

Parents often ask basic questions: What’s wrong with my child? What will my child be like later? What can be done to help my child? (Bagnato, Neisworth, & Munson, 1997). Deaf and hard of hearing individuals with training are especially skilled at being able to respond to these families.

Questions reported by Hands & Voices organization indicate that some common questions that parents ask Deaf/Hard of Hearing Role Models are:

1) I saw on the internet that deaf adults have a low reading level – is that true?

2) What will my child’s speech be like?

3) You have good speech – how can I make sure my baby does?

4) Do you wear hearing aids? Why or why not?

5) Will you get an implant? Why or why not?

6) Should I stop playing my guitar?

7) Kids are cruel…. How can I make sure that my child won’t be teased?

8) You have good self esteem – how do I develop that in my child?

9) When will I stop crying?

10) What about school… can my child go school with his sister? Or does he need a special school? Did you go to public school?

They often ask personal questions such as:

1) Do you have kids? A spouse? Hearing or deaf?

2) What about sports?

3) Can you talk on the phone?

4) Can you drive?

5) How do you hear in the dark?

Parents appreciate a personal perspective from a D/HH role model. It increases the families’ openness to examine issues in greater detail. Families report that interactions with D/HH individuals calm anxiety.

Parents often believe initially that they have lost a modality forever. Most parents of newly identified children do not realize how meeting a deaf or hard of hearing adult will help them until after they have had the opportunity. Systems must create opportunities for parents to meet deaf and hard of hearing adults through presentations, workshops, home visits, and social events. Deaf and hearing families interacting together in everyday social environments, such as birthday parties, family get-togethers, attending sports events (baseball, basketball, football) games, theater, and dances, should be a normal expectation of life for our children of the present and future. Parents who see D/deaf and hard of hearing adults as valuable members of their team begin to understand the potential in their child. Often the D/deaf/hard of hearing adult is able to articulate what the child cannot yet. They lend ability and creditability for the child’s upcoming/future needs. They assist the parents as they discover the potential and strengths of their child. They can give hope and encouragement through the inevitable ups and downs of those early years and they can assist the family in finding new ways of communicating and thinking and living with deafness and hearing loss becomes the new normal for families. Families have probably never thought about:

1) driving with an inside car light on for visual cues,

2) looping the car, using FM assistive technology,

3) saying goodnight with the light on,

4) going upstairs facing the child and not speaking while climbing stairs without facing the child,

5) watching for opportunities to close the gap (incidental learning),

6) pointing out opportunities to cue the child to awareness of sound, or

7) using a vibrating alarm clock.

The deaf or hard of hearing child lives in a hearing world (family, church, neighbors). Meeting the deaf adult soon after diagnosis provides the family with an early opportunity to ask some of their questions and see these communication strategies modeled. The involvement of adults who are Deaf and Hard of Hearing should not be as token members, but leaders and trendsetters in our systems of care. Individuals who are D/HH can help families overcome family barriers to open, honest communication. They can provide families with examples of a sense of humor. They themselves provide an exceptional model for great inter-personal skills. Hearing professionals can benefit by inviting a role model to accompany them on family visits. However, if these individuals are serving a professional role, then there should be a mechanism for monetary compensation for their time and expertise. Deaf and hard of hearing individuals should be included in panel discussions and social opportunities. Play groups opportunities should include both deaf and hearing parents. In the Colorado system, the activities sponsored through our Families for Hands & Voices provide many opportunities for social and professional interactions with D/HH adults and their families. The Hands & Voices organization has a policy for the Infusion of Deaf/Hard of Hearing participation within Hands & Voices. This policy can be found at the following website: http:// www.handsandvoices.org/articles/deafpersp/V15-2_deafinfusion.htm

Deaf Mentors

Watkins, Pittman and Walden (1998) published outcomes from the Experimental Deaf Mentor Program established in the 1990s. The program provided families with a Deaf Mentor who taught the families American Sign Language, information about deaf culture and their personal knowledge of deafness. The children receiving a Deaf Mentor in Utah were matched with children in a SKI-HI early intervention program in Tennessee who did not have a Deaf Mentor. They found that the children participating in the Deaf Mentor program had significantly higher scores on tests of early receptive and expressive language. Today, the Deaf Mentor program includes about 18 states but not all states have programs that provide services to all families who have children who are D/deaf or hard of hearing who would like to learn American Sign Language.

In addition, there are other states that have initiated sign language instruction programs including Arizona, Arkansas, Georgia, Hawaii, Illinois, Vermont, Minnesota and Wisconsin, New Mexico (Abrams & Gallegos, 2011), and outside the United States, Kenya. Some programs call these sign language instruction programs Deaf Role Model Programs, (Abrams & Gallegos, 2011, Mohay, Milton, Hindmarsh, Ganley, 1998, Parasnis & Fischer, 2005; Takala, Kuusela & Takala, 2001).

In 2013, the Early Intervention Supplement to the Joint Committee on Infant Hearing Position Statement (2007) was published (http://pediatrics.ons.org/content/131/4/e1324.full JCIH, 2007). Two objectives dealt with deaf and hard of hearing individuals. Of the 11 objectives, three of them include objectives related to the topic of this presentation. The following discussion includes the exact wording of this Early Intervention Supplement, designed to be as recommended practice.

Goal 3a. (pg. e1328) Intervention services to teach American Sign Language (ASL) will be provided by professionals who have native or fluent skills and are trained to teach parents/families and young children.

Goal 10. (pg. e1337) Individuals who are D/HH will be active participants in the development and implementation of EHDI systems at the national, state/territory, and local levels. Their participation will be an expected and integral component of the EHDI systems.

Goal 11 (pg. e1338) All children who are D/HH and their families have access to support, mentorship, and guidance from individuals who are D/HH. This goal intends that families have access to meaningful interactions with adults who are deaf or hard of hearing who have the knowledge and skills to mentor, support, and guide families in culturally and linguistically sensitive ways and to serve as communication/language and social role models and mentors for deaf and hard of hearing children and their families.

The overarching goal is to have deaf and hard of hearing individuals woven into the fabric of EHDI systems at every level. Deaf and hard of hearing individuals know “what works” to meet their language and communication needs in a way that hearing people cannot. Since the support of language and communication of babies is intended to be the heart of EHDI systems, it is critical to include deaf and hard of hearing adults in these systems.

Currently, there are few, if any, EHDI systems that include deaf and hard of hearing participants in a meaningful way. The system should have diversity of representation at many levels. Deaf and hard of hearing persons should be included, for example, as EHDI directors, EHDI advisory panel chairs and members, administrators, Part C coordinators, audiologists, pediatricians, counselors, mentors, sign language teachers, and in other roles.

The Joint Committee on Infant Hearing Year 2007 Position Statement includes numerous recommendations supporting the inclusion of deaf and hard of hearing individuals in the lives of families with deaf and hard of hearing children (JCIH, 2007). The JCIH states:

“Almost all families choose at some time during their early childhood programs to seek out both adults             and child peers who are deaf or hard of hearing. Programs should ensure that these opportunities are             available and can be delivered to families through a variety of communication means, such as Web sites,e-mail, newsletters, videos, retreats, picnics and other social events, and educational forums forparents” (JCIH, 2007, p. 909)

Research demonstrates the benefits to families of connections with members of the deaf and hard of hearing community. Parents who have many contacts with deaf and hard of hearing adults exhibit a strong sense of competence in regard to raising their child (Hintermair, 2000). Hearing parents identify deaf parents as one of the most important sources of support (after teachers, therapists, and spouses) (Meadow-Orlans, Mertens, & Sass-Lehrer, 2003). Children from families who received deaf mentor services made greater language gains, had considerably larger vocabularies, and scored higher on measures of communication, language, and English syntax than similarly situated children without deaf mentor services (Pittman, 1998). Deaf community members are able to provide deaf children with something hearing parents cannot, experience as a deaf person.

In summary, the purpose of EHDI systems is for children who are deaf or hard of hearing to have the opportunity to achieve their potential, to have comparable opportunities to children with hearing. When individuals who are deaf or hard of hearing are infused throughout our EHDI systems, so that children who are deaf or hard of hearing can decide to become doctors, psychologists, audiologists, teachers, social workers, early intervention providers, sign language instructors, or deaf role models, successful accomplishment of the goals of EHDI will be met. Providing families and children with the support they need to develop skills commensurate with their cognitive potential should result in a world of opportunity for the newborns that are identified. That world is within our reach.

 

About the Deafness Forum Of Australia

The Australian Government funded the establishment of Deafness Forum in 1993 to provide quality advice to it on behalf of the entire deafness sector. This advice, offered consistently over two decades has informed government policy and played an important role in building a fairer and more inclusive nation.

The full monograph of this presentation including information on the Deaf Child’s Bill of Rights as implemented within educational systems is available at http://www.deafnessforum.org.au/index.php/events/libby-harricks-memorial-oration

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Deaf and Hard of Hearing Teens: Fitting in When We Stand Out

September 11, 2017

The Journey through Adolescence: Fitting In When We Stand Out

Winning Sportsmanship

 

The adventure of adolescence is full of discovery both socially and within ones’ self, and even more so for someone who is deaf/hard of hearing.  Adolescents seemingly expend constant energy to become strong, unique individuals while at the same time trying to fit in without standing out.

For young people who are deaf or hard of hearing (DHH), adolescence provides the opportunity for them to own their hearing without it becoming their central identity. People do not want to be defined solely by their audiogram, technology, or by the accommodations they use.

Supporting our youth as whole people who happen to have hearing differences may lead to increased acceptance of self.  When a group of teens who are DHH were asked what they would wish for in a perfect world, they did not wish for normal hearing. Instead they wished that “people wouldn’t think of us as impaired or broken”. They wish that people would think of them as a teen first, person with hearing loss second.  At the Colorado Hearing Foundation-sponsored Journey Through Adolescence Conference (Children’s Hospital Colorado March 2017), Jonah Berger, therapeutic mentor, stated “…disability should not be in charge, we are in charge…” Adolescents can learn to take charge and become confident with who they are as they choose their path in life.

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To support confidence and self-advocacy for teens who are DHH–the strategies below, built around pillars of growth through adolescence, may help them on their journey of self-discovery

 

  1. EMPOWER ADVOCACY:

Empower advocacy by teaching adolescents how to become active in their audiology and educational appointments. Glaring at their audiologist or counselor may give them a feeling of control, however, it does not build partnerships. They need to tell these professionals what makes them cringe, what makes them grumpy or frustrated in school, with their technology, or being deaf/hard of hearing.  Teens should become the expert about their own hearing. They need to describe what makes them hear better and how they prefer to communicate. Learning the skills of self-advocacy through partnerships will be an invaluable skill as teens mature into fully independent adults.

 

  1. OPPORTUNITIES FOR CHOICE:

Advocacy works best when you understand your hearing, your technology and what works well for you.  Adolescence is a time for DHH teens to try new technology, strategies and communication styles to have full access to the information that their peers are receiving.  Encourage your teen to explore their options. Sometimes the hardest part of making choices is taking the first step to try something new.

 

  1. BALANCE INTERDEPENDENCE WITH INDEPENDENCE:

Interdependence is how we rely on each other.  Independence is how we rely on ourselves.  Healthy interdependence builds the foundation for future independence and should start early.  The goals for independence for a teen that is DHH should be the same as for their siblings.

For example, teens should be expected to get up on their own and get ready for school in the morning. DHH teens can use vibrating alarm clocks or other technologies to develop this independence. Staying home alone and knowing what to do in case of an emergency are valuable skills for all teens.

 

  1. BEYOND HEARING TECHNOLOGY:

Technology is rapidly advancing and can remove some of the typical and frustrating communication barriers.   To stay connected with friends, teens can now access Instant Messaging, texting, social media, real time captioning apps, video relay.  Internet safety and supervision is critical and must be taught to all children and youth regardless of their hearing differences. Additional information on cyber safety may be referenced at

www.handsandvoices.org/resources/OUR/2014/V17-3_cybersafety.htm

 

  1. CULTURAL LITERACY:

Teens who are DHH benefit from being informed on current teen culture.  Incidental language and learning is rapidly acquired during adolescence through music, movies and TV and are part of the adolescent culture.  There are multiple ways for adolescents who are deaf/hard of hearing to connect with the typical adolescent world and be a part of that culture.  This might include YouTube, videos, lyrics, technology and interpreters that specialize in signing music and live concerts.  Being a part of a team or other activities give the teen another identity besides their hearing.

 

  1. SOCIAL COMMUNICATION:

During pre-adolescent years, a variety of skills are developed through play and guided by adults.  During these years, parents and teachers often help with miscommunication or clarify missed information.  During adolescence, the development of friendships requires more communication skills and less play.   Adolescents need to develop the skills to repair communication breakdowns, which include asking for clarification and/or asking for information to be repeated. Adolescents have the responsibility to increase their ability to be better understood, whether that be through spoken language, sign language or both.  Multiple opportunities to socialize with friends and family members will increase their confidence and ability to repair communication breakdowns.

 

  1. IDENTITY:

As William Shakespeare said, “To thine own self be true…”  Often people with hearing loss are not aware of how exhausting good communication can be. When exhaustion happens, it is easier to revert to faking or pretending that we are hearing rather than asking for repetition for the third, fourth or fifth time. Encourage youth to be true to themselves and to the people with whom they are interacting. Responding with “just forget it”, is unfair to all. People with typical hearing do not hear everything and ask for repetitions with confidence.  Let teens know that it’s okay to take a break when they are working hard to hear and to let people know that is hard to hear everything that is being said.

 

 

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  1. SELF-ESTEEM:

Let’s be clear, everyone’s self-esteem is fragile. This fragility is not a flaw to be corrected, it is a human condition to be respected in everyone. Like all adolescents, teens who are DHH struggle with self-esteem and self-identity. Hearing is another facet of self-esteem and self-identity.  Teens who are DHH may feel comfortable with people who are hearing, people who are deaf or people who are hard of hearing, depending on the time or the social situation. Make sure they know that they do not need to choose only one group, and that the group is not their self-identity. The development of self-identity is a life-long, fluid process.

 

  1. ROLE MODELS:

You can’t be what you can’t see. DHH role models or mentors are the best kept secret but it shouldn’t be that way.  If teens, parents or professionals are curious about the possibilities and successes of people who are of hearing in today’s world, then seek out the people that are on that journey.  As you and your teen meet people and cultivate stories, keep in mind that your child will have their own unique experiences and journey. For perspectives from teens may be referenced at www.handsandvoices.org/resources/dhh_adults.html

 

  1. CONFIDENCE:

Teasing and bullying will happen whether you are deaf, hard of hearing or if you have typical hearing. Bullies are victims of low self-esteem too.  Bullies attack perceived weakness.  Help your teen learn a variety of skills to get through all kinds of situations. Kidpower.org is an international organization that provides trainings to increase safety and confidence. Your DHH adolescent can teach the community how they want to be treated, what they need for respect, and what they have to offer. The respect one has for oneself becomes the model for the respect one receives from others.

 

by Stephanie Olson, Co-Director of Deaf and Hard of Hearing Infusion at Hands & Voices

and

Lynne Canales, Itinerant Teacher, Englewood Public Schools

 

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