The first time I attended the Statewide Conference on Education of the Deaf/Hard of Hearing was in 2008 in Galveston. I was fresh out of school and ready to start my first year of teaching Deaf Education. I had several ideas on how to educate students and ways I thought were best for all children with hearing loss, none of which included Auditory Verbal practices. Well, here I am 4 years later attending Statewide as an educator, interpreter, and most importantly, a parent of a beautiful two year old little girl with mild to moderate hearing loss.

Becoming a parent changed how I viewed many things, including how I thought all children with hearing loss should be educated. After our daughter was diagnosed with mild to moderate hearing loss, I explored all of the options, including Auditory Verbal Therapy. This year during Statewide, I attended a session addressing the unique communication needs of children which was taught by Mary Koch Cline. During her session, she mentioned something she called the Auditory Sub. The Auditory Sub used a variety of visual clarifiers like head nod, pointing, and beginning to form a sign to help a child understand the message before signing the entire message for the child. I often use an auditory sandwich technique(say the message, sign the message, say the message again) with our daughter, but I found the auditory sub particularly helpful because it provides my daughter a few extra cues to comprehend what was said without signing the full message.

During this year’s conference, I also had the opportunity to attend the ice cream social for families of children with hearing loss. I really enjoyed meeting other parents and talking with them about their experience in learning that their child had a hearing loss. I felt it was a great experience and look forward to taking my entire family in the future so that my daughter can meet other children just like her.

Summer Harrison, HoPE Parent Partner

Attending the Statewide Conference on Education of the Deaf and Hard of Hearing in July 2012 was an excellent opportunity for me and my family.  Along with the opportunity to hear current research and innovative strategies that will support academic success for my deaf son, it was a great experience to network with other parents and educators of deaf and hard of hearing children.  The chance to meet other parents and professionals who believe in providing our children with an exceptional education was inspiring.  I left the conference motivated to share what I had learned with those who work with my son and eager to learn more about supports available to deaf and hard of hearing children.

The coordinators, participants and supporters of this conference made it a warm and welcoming first time experience for me and my family.  Childcare was available during the sessions and family fun night encouraged the families to meet and get to know each other making it a positive experience for all.  My oldest child had a chance to get to know other siblings of deaf/hard of hearing kids creating a supportive friendship that will last for years to come.  My youngest participated in a childcare program with peers his age tailored to his own individual communication and medical needs.  The conference sessions were conveniently located in one building making it very convenient to participate in sessions and check up on my kids as needed throughout the day.  The Statewide Conference on Education of the Deaf and Hard of Hearing is a family friendly conference that goes above and beyond to embrace deaf and hard of hearing students and their loved ones.  Ultimately, because of all of the tremendous benefits in attending this conference, my family and I plan to attend again and again.

Tonya Major, HoPE Parent Partner

May 2012 marked the launch of the HoPE Parent Partnership Program, which is a new family support program that promotes informed choice for families navigating the early hearing detection and intervention process in Texas! The program is designed to assist families in the early stages of learning that their infant or toddler has a hearing loss. Trained parents serving as Parent Partners are available to help families understand their child’s diagnosis and provide support to families in accessing medical, audiological, early intervention and family support services to promote their child’s development.

A series of orientation webinars were held during the month of May to kick off the program. Providers from Abilene, Cypress, Fort Worth, Houston, Hurst and San Antonio were represented in the kick off series. These enthusiastic providers, now considered “partners,” are able to refer families directly to the HoPE Parent Partnership Program℠! We invite all providers who are serving families in outpatient hearing screening (hospitals, pediatric/primary care, otolaryngology and audiology practices) and diagnostic audiology settings to “partner” with us in June for one of the following webinars:

June 13, 2012 12:00 pm – 1:00 pm
June 14, 2012 3:00 pm – 4:00 pm
June 15, 2012 12:00 pm – 1:00 pm
June 19, 2012 12:00 pm – 1:00 pm
June 21, 2012 12:00 pm – 1:00 pm

The HoPE Parent Partnership Program℠ will serve to assist outpatient and diagnostic audiology practices in providing much needed direct and individualized care coordination services to families. This training will detail how outpatient hearing screening providers and audiologists are able to make a referral and the services the program provides. Program referrals are HIPAA, FERPA and IDEA-Part C compliant.

All orientation training sessions will be held in webinar format. The content is the same regardless of which webinar you attend. Please email Alicia Favila (alicia.favila@region10.org) with your contact information as well as the date and time you wish to register. Registered participants will receive email confirmation, materials and directions to participate the day before the selected webinar. As a token of our appreciation, referring providers will receive a complimentary copy of the Community Partner Texas EHDI Public Service Announcement.

Please be sure to join us in June! We look forward to expanding partnerships statewide on behalf of families navigating the early hearing detection and intervention process in Texas!

To download the HoPE Parent Partnership Program℠ brochure click here

Please note: Informational webinars will be held for the greater Texas EHDI community during the summer of 2012.

The HoPE Support Network^SM is an endorsed activity of Texas EHDI.  Funding and oversight of the HoPE Support Network^SM is provided by Region 10 Education Service Center through the Texas Continuous Improvement Process.

The HoPE Parent Partnership Program℠ was established based on outcome data from families and professionals who participated in the Texas EHDI Pilot (2008 – 2011). The Program’s intent is to directly impact the state’s early hearing detection and intervention (EHDI) system by improving outcomes for families of infants and toddlers navigating the complex system of newborn hearing screening, diagnosis and early intervention in Texas. The Program promotes the philosophical framework of informed choice, helping families determine their own answers to these really big questions they face in light of their child’s suspected or diagnosed hearing loss:

• Am I getting the right sort of help and support to make choices and decisions that I’m happy with and that are right for my family?

• Am I being offered all the choices and opportunities that are available for deaf and hard of hearing children and their families?

• Do I feel I’m being treated with respect and are my views and opinions being valued?

Too many families of children in Texas do not receive critical medical, audiological and early intervention care between the outpatient hearing screening (rescreening) and diagnosis. There is often a lack of timely referral for diagnosis of, and intervention for, suspected hearing loss in infants and toddlers. Because Texas families experience these disparities, the HoPE Parent Partnership Program℠ invites all practicing audiologists serving infants and toddlers in both outpatient and diagnostic settings in Texas to partner up with the Program! Together we can change this reality for Texas families.

HoPE Parent Partnership Program℠ Audiology Services Orientation Training

The Program will provide orientation training beginning the week of May 21, 2012. This training will detail how audiologists are able to make a referral and the services the program provides. Program referrals are HIPAA, FERPA and IDEA-Part C compliant. The HoPE Parent Partnership Program℠ will serve to assist outpatient and diagnostic audiology practices in providing much needed direct and individualized care coordination services to families.

All orientation training sessions will be held in webinar format. The content is the same regardless of which webinar you attend. Please email Alicia Favila (alicia.favila@region10.org) with your contact information as well as the date and time you wish to register. Registered participants will receive email confirmation, materials and directions to participate the day before the selected webinar. Referring audiologists will receive a complimentary copy of the Community Partner Texas EHDI Public Service Announcement.

May 23 – 12:00 PM – 1:00 PM

May 24 – 3:00 PM – 4:00 PM

May 25 – 12:00 PM – 1:00 PM

May 30 – 12:00 PM – 1:00 PM\

May 31 – 3:00 PM – 4:00 PM

Please note: Informational webinars will be held for the greater Texas EHDI community during the summer of 2012.

The HoPE Support Network^SM is an endorsed activity of Texas EHDI. Funding and oversight of the HoPE Support Network^SM is provided by Region 10 Education Service Center through the Texas Continuous Improvement Process.

Did You Know?

• 3 in 1,000 babies are born with permanent hearing loss in one or both ears – that equates to more than 1,200 babies a year in Texas
• Early childhood hearing loss is the most common condition in newborns at birth
• Infants with the proper diagnosis can be fit with hearing aids as early as a few days old
• Research demonstrates that with appropriate and timely family-centered early intervention, normal language, cognitive and social development for such infants is likely
• According to the Texas Education Agency and based on projected identification outcomes, only 14% of families of children with hearing loss, birth to three, are currently accessing early intervention services in Texas.  This means that 86% of families of children with hearing loss, birth to three, are potentially undiagnosed, underserved or un-served by the state each year!
• Public and private early intervention, resources and family support services are available in your community to assist parents raising a child with hearing loss

Texas EHDI is conducting numerous outreach and educational initiatives in May to support the early identification of infants and toddlers affected by early childhood hearing loss:

• The HoPE Parent Partnership Program℠, designed to support families whose infant or toddler is suspected or has been recently diagnosed with hearing loss and to educate providers about the importance of their role in supporting these families launches this month across Texas!
• Radio stations across Texas are being encouraged to promote May as Better Speech and Hearing Month by airing the Texas EHDI Public Service Announcement (PSA)
• Community providers who have received a copy of the Texas EHDI PSA are providing feedback on the successful use of this resource to educate patients, families and the greater community
• Check out the American Speech and Hearing Association’s website for more information on May – Better Speech and Hearing Month

Texas EHDI wants to know how you’re promoting May as Better Speech and Hearing Month.  Please take a moment to share your efforts to bring about greater awareness of early childhood hearing loss and the resources and services available to families of young children in your area.  We’ll be happy to promote your efforts on this site.  Texas EHDI – together we are a system of care – a community of support!

Representatives involved in targeted improvement activities included those who provide hospital-based newborn hearing screening, outpatient hearing screening, diagnostic audiology and amplification services as well as otolaryngology and pediatric medical services, early intervention services through the private sector as well as Early Childhood Intervention programs, Regional Day School Programs for the Deaf and local school districts.  Families of infants and toddlers with hearing loss were also part of this amazing effort!

The Lack of Language Learning Is Life-Altering

The first years of life are when basic language skills develop, and the first two to three years of life are generally recognized as a critical period for language learning.  There is no substitute for natural language learning, and language learning that begins at age three or four is not natural.

(Raising and Educating a Deaf Child, M. Marschark, 1997)

Hearing loss is more common than any other condition at birth, affecting 3 in 1,000 babies born in Texas.  More than 400,000 babies are born in Texas annually, yet our state records show that only a fraction of children receive outpatient screening services, obtain a diagnosis, or enroll in early intervention services.

“Left undetected, infant/early childhood hearing loss can negatively impact speech and language acquisition, academic achievement, and social and emotional development.  If detected, however, these negative impacts can be diminished and even eliminated through early intervention. Because of this, the National Institutes of Health’s (NIH) Consensus Development Conference on Early Identification of Hearing Loss (1993) concluded that all infants should be screened for hearing loss, preferably prior to hospital discharge.”

www.infanthearing.org/screening/index.html

Raising the public’s awareness of the prevalence of newborn hearing loss and educating providers about their role in supporting families who are navigating the early hearing detection and intervention process in Texas are key efforts to ensure that families of newborns receive appropriate and timely hearing screening, diagnosis and enrollment in early intervention programs.

The objective of the Texas EHDI pilot was to better understand the dynamics that contribute to families’ ability to successfully access medical, audiological and early intervention services under Part C of the Individuals with Disabilities Education Act (IDEA) in accordance with both the 2-day federal rule and the 1-3-6 month protocols as outlined by the Center for Disease Control and the Joint Committee on Infant Hearing.  These protocols have been adopted by the Texas Department of State Health Services and are supported in state regulations and agency policy by the Department of Assistive and Rehabilitative Services – Early Childhood Intervention and the Texas Education Agency, to ensure that:

• Infants and toddlers with hearing loss will have age-appropriate linguistic (visual and/or auditory),     cognitive and social-emotional development as early as possible;

• Families will report high degree of satisfaction with the EHDI process and services (screening,     diagnosis, early intervention, transition to IDEA Part B, as appropriate).

In order to address the critical issue of loss to follow-up/loss to documentation (LFT/LTD) in Texas, the Texas Deaf & Hard of Hearing Leadership Council: Birth – 3 (Leadership Council) proposed key strategic initiatives focused on improving providers’ knowledge and skills across the EHDI continuum.  In equal turn, the Leadership Council proposed key strategic initiatives designed to assist parents in understanding how to access early hearing detection and intervention (EHDI) providers and services in a timely, effective manner.

Lessons Learned

Education & Networking Are a Must!

Through the course of the Pilot, pediatric medical providers, otolaryngology and audiology providers received EHDI-based training and technical assistance targeted to improve their knowledge and skills in providing services to children and families to ensure a timely diagnosis, coordinated medical care and enrollment in early intervention services.  Providers in each community participated in local EHDI Consortiums, designed to strengthen the local network of care between newborn hearing screening, diagnosis, early intervention and family support services.  The ability for providers, regardless of their role or hiring entity, to communicate and collaborate locally across disciplines was cited as a distinct benefit.  Providers made a commitment to local relationships which supported continued momentum of improvement activities.  Each local EHDI Consortium developed an action plan to support their collaborative efforts to strengthen the referral process and as a result of the pilot activities all providers reported an increase in referrals across disciplines.

Q & A

Texas EHDI: What was the most helpful or beneficial outcome from your participation in the Pilot?

We’ve been able to foster connections with community resources and providers.  We’ve also benefited by keeping momentum of local EHDI consortium group going.  Our participation in education and networking activities has helped us make the referral process easier in our community.  We’ve seen an increase in referrals to and from providers since the initiation of provider education in the community.

Cochlear Implant Coordinator, McAllen

We definitely came out of the pilot with heightened levels of awareness and education regarding newborn hearing screening and follow-up.

Physicians’ Office, East Texas

Learning what the exact notification requirements are for audiologists regarding the TEHDI 1.3.6.  referral process and how to make an appropriate referral to our local ECI program were great benefits to our work.  We know what we need to do for our patients in terms of testing and counseling.  What we did not know was what the state required of us.

Audiologist, Fort Worth

The Role of the Otolaryngologist is Critical to Improving Timely Diagnosis of Hearing Loss

The Otolaryngologist (commonly known as the Ear, Nose and Throat doctor or ENT) plays a significant role in supporting the EHDI referral and care coordination process.  One of the important lessons learned from the Texas EHDI Pilot is the understanding that while not all ENTs specialize in children, many ENTs do not specialize in ears.  Of those ENTs who serve children and specialize in ears, many refer out to select ENTs who serve “hard ears,” but the referral may not occur until the child is 2 – 3 years of age.  This situation supports ENTs’ and audiologists’ claims during the course of the pilot that they are still consistently diagnosing children at 2 – 3 years of age as opposed to 2 – 3 months of age.  Each pilot site is currently developing a list of local ENT providers who serve both children and specialize in ears and are targeting networking, educational outreach and resources to these providers to strengthen the local EHDI referral process. For more information go to Community EHDI Start-ups and click on Local EHDI Action Plans.

Medicaid Coverage and Reimbursement Affects Outcomes for Children and Families

Concerns were identified regarding reimbursement practices for providers performing outpatient hearing screening when the child did not pass the initial hearing screening at birth.  Given that the majority of children who do not pass the initial hearing screen do in fact pass the outpatient screen this translates into a significant financial loss on the part of the provider in order to remain compliant with state and national EHDI guidelines.  It is also a substantial burden on communities as many Medicaid providers have effectively had to stop accepting Medicaid patients because of lack of reimbursement.  This translates into fewer Medicaid providers in a given community, as well as a significantly increased burden on the providers that remain open.

Additional reimbursement concerns were identified related to (1) sedated auditory brainstem response (ABR) testing commonly used as part of the screening and diagnostic process, (2) hearing aid financial outlay and reimbursement providers face as well as (3) the parameters for hearing aid replacement coverage.  Texas EHDI has established a Medicaid Policy Review Committee who is currently working to address these critical issues and others to improve services to children and families statewide.  Please watch for further developments in the coming months on this topic.

Family Support Is Absolutely Essential, Particularly at the Time of Diagnosis.

Through the course of the pilot families were able to provide significant perspectives on the strengths, needs and opportunities for improvement in the local referral process and services.  Many families reported that they had at least one service provider who truly championed them to seek and secure the support they needed for their child and family, but these champions were very person-dependent and as families reported “the luck of the draw’ that they were even referred to someone who would work in this manner on their behalf.

Families collectively spoke to the need to address education at the hospital service level, pediatric medical care and otolaryngology service levels, and private and public early intervention service levels.  Families struggled with receiving inconsistent information from providers about the results of their newborn’s hearing screen (birth and/or outpatient screen), being served by providers who lacked the knowledge needed to provide timely, coordinated care for their child’s medical needs, and, at times, being served or denied services from early intervention service providers whose philosophical approach to supporting deaf and hard of hearing children’s language development was based on limited skills and in some instances, biased opinion which conflicted with families’ choices and decisions.

Families were also asked what specific improvements could be made in the area of family support.  While education, expanded skills, provider sensitivity and openness were all cited as critical needs, families who participated in the pilot conveyed a unified message that those families new to the diagnosis of hearing loss desperately need someone to assist them in navigating the complex system of care in Texas, and that someone most often recommended was another parent or family.  Family to family support has been shown to be of significant benefit to improving outcomes within the early hearing detection and intervention arena and we were encouraged by the collective voice of Texas families that this was an important direction to pursue.

Out of the pilot was borne the HoPE Support Network℠ whose mission is to empower families and educate professionals to work in a collaborative, culturally sensitive, respectful partnership to promote informed choice for families navigating the early hearing detection and intervention system in Texas.  The Network’s priorities include the following:

• Trained parents (HoPE Partners℠) provide technical assistance and support to families of children     with any degree of HL as they navigate the (EHDI) system of care.  This support is designed to     address loss to follow-up, one family at a time, by facilitating the family’s ability to increase their     understanding of information received in order to make informed choices for their child and family.

• Provide training and technical assistance to EHDI professionals through an informed choice     framework that is respectful, objective, and comprehensive.

• Unite trained, successful members of the Deaf/HOH community (HoPE Mentors℠) with families of     deaf and hard of hearing infants and toddlers and EHDI professionals to demonstrate a hopeful     future and provide perspective.

• Provide leadership and guidance in systemic improvement of the EHDI system at both state and     local levels.

The HoPE Support Network℠, in partnership with Region 10 Education Service Center, is launching the HoPE Parent Partnership Program℠ this spring.  Trained parents will partner with local audiologists throughout the state to provide technical assistance and support to families of children with any degree of hearing loss as they navigate the early hearing detection and intervention system of care.

Please check out the Hope Begins Here tab on this blog site for more information on the HoPE Support Network℠, the HoPE Parent Partnership Program℠, and/or how you can become involved.

Cultural variations also influence outcomes within the early hearing detection and intervention process.  Families expressed a need to have all parent resources available in Spanish, as well as other languages spoken throughout Texas.  Cultural sensitivity and care will be taken to make parent resources available for all families affected by early childhood hearing loss.  Allocating funds to make these resources accessible should be a priority for all state agencies and community organizations that have a vested interest in appropriately serving families throughout Texas.

The Role of Pediatric Medical Providers to Provide Coordinated Care through Medical Home Practices

According to the American Academy of Pediatrics, infants and toddlers with hearing loss fall under the umbrella of children with special health care needs (CSHCN) and therefore should receive family-centered, coordinated, culturally responsive medical services through a medical home framework.  A family-centered medical home is not a building, house, hospital, or home healthcare service, but rather an approach to providing comprehensive primary care.  In a family-centered medical home the pediatric care team works in partnership with a child and a child’s family to assure that all of the medical and non-medical needs of the patient are met.  Through this partnership the pediatric care team can help the family/patient access, coordinate, and understand specialty care, educational services, out-of-home care, family support, and other public and private community services that are important for the overall health of the child and family.  The American Academy of Pediatrics (AAP) developed the medical home model for delivering primary care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective to all children and youth, including children and youth with special health care needs.

Medical home education was a key activity of the pilot, and providers expressed their appreciation for the relationships they established with the Texas EHDI Health Educators, the educational opportunities and technical assistance they were provided, and the partnerships they gained and/or strengthened through local EHDI Consortium efforts.

Many medical home providers conveyed the need for expanded and continued education to promote EHDI protocols and practices, case-based studies, and continued technical assistance efforts to achieve the 1-3-6 month benchmarks outlined by the Joint Committee on Infant Hearing and adopted through the Texas Department of State Health Services.

Prenatal and Perinatal Providers Are Essential Partners in the Improvement Process

Providers were also very specific about the need for education in the prenatal and perinatal arenas.  They felt strongly that prenatal providers (obstetricians, gynecologists, midwives, prenatal educators, etc.) should have the opportunity to be involved in this type of educational effort, as this would serve to educate families about newborn hearing screening.  The Texas Department of State Health Services provided education to midwives, who were very receptive to the training.  This free training is now available to prenatal providers throughout Texas.  For more information on how to access this training, please visit http://www.tehditraining.com/prenatal/.

Data from the pilot also revealed strong desire for newborn hearing screeners to receive training and technical assistance support, particularly in how to effectively interact with parents to ensure that families know what to do next to ensure their child has an outpatient hearing screen.   Audiology providers did convey that they sometimes receive reports from nurseries that attempted four or five screens in an effort to achieve a “pass” report, which is not only ineffective, but can actually contribute to delay of a child’s diagnosis.  Several providers also reported that parents had been given message from screeners minimizing the importance of follow-up, stating things like “it’s probably just fluid in the ear” These statements, while well-intentioned, have a negative impact on follow-up outcomes because they have the great potential of providing parents with a false sense of security.  While the goal is not to panic parents unnecessarily, providers in some communities were very concerned that parents were being given messages of false laxity regarding the need for attentive follow-up to newborn hearing screening from nursery screeners.

Those providers involved with the outpatient hearing screening process felt training and technical assistance needs were high among newborn screeners in the hospitals.  There have been stories of screeners testing until they get a positive result.  Providers reported that in some instances their patients were billed later for the newborn hearing screen.  As a result, those patients refused the screen with the next child.

As the oversight agency in Texas the Department of State Health Services provided education to hospital screeners who were as equally receptive to the training as were the prenatal providers.  This free training is now available to providers throughout Texas.  For more information on how to access this training, please visit http://www.tehditraining.com/UNHS/.

Next Steps

The Texas EHDI Pilot gave all of us a greater vantage point to better understand the strengths, needs and opportunities for improvement within the early hearing detection and intervention system of care.  It is time to leverage what we’ve learned to benefit all who provide early hearing detection and intervention services, the greater community, and, most importantly, families of infants and toddlers navigating the complex system of care.  Please visit the Call to Action tab on the blog site for more information about Moving the Texas EHDI Statewide Campaign Forward.  We invite you to get involved in the statewide campaign and related efforts now underway across Texas.  Together we are Texas EHDI – A System of Care. A Community of Support!

House Bill 411 took effect June 17, 2011, except for provisions relating to the newborn screening information disclosure statement, the destruction of genetic material obtained from newborn screening tests, and the requirement to obtain consent from a parent, managing conservator, or guardian before disclosing newborn screening information for certain public health research purposes, which take effect June 1, 2012.

To read HB 411 in full click here http://www.capitol.state.tx.us/tlodocs/82R/billtext/pdf/HB00411F.pdf#navpanes=0