Our Future Christine Yoshinaga-Itano, Ph.D. University of Colorado, Boulder Department of Speech, Language & Hearing Sciences

What’s changed Almost every birthing hospital in the US has instituted a newborn hearing screening program. There are 4 million babies born each year in the US 2 of every 1000 of these babies will be identified with a permanent and significant hearing loss Diagnosis of hearing loss should occur by 3 months of age

What’s changed Referral to intervention should occur within 48 hours of the diagnosis of hearing loss Where are the children going? Currently, the vast proportion of these children are referred to Part C, infant/toddler

THE PROBLEM Optimal outcomes Require the highest level of expertise in deafness and hearing loss at the very beginning

How many children? 8,000 to 12,000 children could be identified each year within the first two months of life

Referral to intervention Too many points of entry into the system Public State Schools for the Deaf Education/Health systems Private Public Local Educational Agencies Part C/ Infant-Toddler Families are getting lost in the system or appropriate service is delayed. INFANT/TODDLER – PART C IS THE MOST COMMON REFERRAL

NO OUTCOME DATA FOR NON- CATEGORICAL INTERVENTION

Deafness/Hearing Loss system All of the successful outcomes data comes from programs with specialized services for families with children who are deaf or hard of hearing:

OUTCOME DATA Colorado Home Intervention Program Boys Town Institute Program Washington State Early Intervention Program Ski-HI early intervention programs Auditory-verbal program in UK

SINGLE POINT OF ENTRY The Colorado System Birthing Hospitals Diagnostic Audiology Co-Hear Coordinators Categorical intervention services Quality Assurance On-going training Options: Sign Language Instruction – Deaf/HOH Integrated/Shared Reading Program Families for Hands and Voices

Colorado system Referral from diagnostic audiology goes to one of 9 regional Co-HEAR coordinators, who are specially trained early-intervention specialists. Originally, instituted by the Colorado Department of Public Health and Environment Now operated through the Colorado State School for the Deaf and Blind

Co-HEAR system Insures that information provided to parents is similar for all families and as unbiased as possible Initial counseling and information provided to parents is by an individual with a very high level of knowledge and experience.

Transition from Diagnosis to Early Intervention Audiologist Confirms Hearing Loss Hearing Resource Coordinator is Contacted Contacts family Initiates data management Contacts local agencies

Qualifications of the CO-Hear Coordinator Experience working as an interventionist with D/HH infants and toddlers Ability to work in partnership with families with specific training for parents of children with hearing loss Ability to coordinate and organize activities, including training about hearing loss, with other agencies

Has sufficient knowledge about infants and toddlers who are D/HH to provide technical assistance to interventionists and professionals from other agencies Ability to assume a leadership role

Credentials of the CO-Hear Coordinator CCC-A CCC-SLP Teacher of the D/HH

Responsibilities of the CO-Hear Coordinator – to Support the EHDI Program Inputs referral data into the state EHDI program database Assists with development and implementation of early intervention programs’ policies and procedures to reflect best practices Collects data relevant to early intervention program growth & program evaluation Monitors customer satisfaction

Participates on local ICC for Part C Maintains a working relationship with community programs (e.g., Part C, Child Find, local school district programs, local public health offices) by offering information about hearing loss, communication approaches, unique assessment needs of D/HH children

Responsibilities of the CO-Hear Coordinator – to Support Direct Service Providers Hires and assists with training of new interventionists Supervises interventionists in the region Disseminates information Organizes regional workshops Monitors and reviews interventionists’ quarterly reports

Provides 1:1 mentoring to early interventionists Working with infants Implementing a family-centered approach Supporting selection of a variety of communication approaches Expertise in implementing each communication approach Learning the “art and science of a home visit”

Responsibilities of the CO-Hear Coordinator – to Support the Family Providing information counseling strategies (e.g., grieving, coping) communication approaches program options Securing funding for amplification and early intervention Providing service coordination – as the identified service coordinator or in collaboration with the identified service coordinator

Recruiting and Training Hearing Resource Coordinators Identify geographic regions Number of children with hearing loss Realistic driving range Familiarity with the community’s services & supports Hold regular administrative meetings Provide reimbursement

Coordinating with Part C – State Level EHDI Advisory Committee EHDI Task Forces Document EHDI system for all stakeholders (e.g., memos, phone conferences, etc) clarify the roles of people and organizations that have expertise specific to sensory disability An infant or toddler whose primary disability is a sensory loss must have an assessment team member with expertise specific to infants and toddlers with that disability

When a referral for a child with a sensory disability is received, an appropriate resource for children with sensory disabilities will be contacted so they may participate in initial contacts with the family Recommendation that the multi-disciplinary assessment include assessment procedures and instruments that are appropriate for infants and toddlers with hearing loss (e.g., emphasis on communication, language, modality, functional auditory skills)

Distribute names of the Hearing Resource Coordinators and their respective counties The Hearing Resource Coordinator might be the most appropriate person to act as the Service Coordinator

Coordinating with Part C – Community Level Hearing Resource Coordinators attend service coordinator training sponsored by the lead Part C agency Hearing Resource Coordinators, or their designee, attends the initial IFSP Hearing Resource Coordinator sponsors and attends meetings with local Part C staff

Coordinating with Child Find Regional workshops EHDI statistics What parents want to know Unique elements of assessment (e.g., audiological report, modality preferences, functional auditory skills) Integrating federal and state initiatives (EHDI, Part C, Child Find, State school for the Deaf) Meetings in individual school districts Articles in newsletters Funding is assumed by the parent organization (e.g., EHDI funds, State School for the Deaf)

Who are the children entering Kdg Early-identified prior to 6 months Early intervention in the first 6 months Language levels similar to children with normal hearing with similar cognitive levels – on average (Yoshinaga-Itano, Coulter & Thomson, 2000, 2001) 75% with intelligible speech (mild through severe) and profound with cochlear implants by 5 years of age (Yoshinaga- Itano & Sedey, 2000) Social-emotional skills at age level (Yoshinaga-Itano & Abdala-Uzcategui, 2000)

INFANT/TODDLERS Hard-of-hearing children are more similar to children with Moderate to profound hearing loss Than to children with normal hearing In Speech Production (Yoshinaga- Itano & Sedey, 2000) And Language Production (Yoshinaga- Itano et al., 1998)

PRESCHOOL-AGED CHILDREN Vocabulary levels are similar to normally hearing peers (Garafalo & Yoshinaga-Itano, 2005) Spoken English syntax is still delayed, as speech production skills are developing (Sedey, 2004) Pragmatic language skills are delayed (Sedey, 2004) Speech production skills are delayed (Yoshinaga-Itano & Sedey, 2000)

Preschool-aged children with significant hearing loss require highly specific and specialized instruction specific to hearing loss In order to enter kindergarten with total language skills and speech production on par with their normally hearing peers

Children who do not maintain age-appropriate communication skills Later-identified children (Yoshinaga-Itano et al., 1998; Yoshinaga-Itano, Coulter & Thomson, 2000, 2001) Multiply disabled – 40% of population but severity and impact on communication varies (Yoshinaga-Itano et al., 1998) Children from non-English speaking families (Nelson, Cardon & Yoshinaga- Itano, 2005)

Special populations Children with progressive hearing loss Children with acquired hearing loss Children with unilateral hearing loss transitioning to bilateral hearing loss Children with auditory neuropathy/dysynchrony

Early-identified/early implanted Children with profound hearing loss Trends for cochlear implantation Early implantation Below 2 years of age (Yoshinaga-Itano, in press) Regardless of method of communication Developing intelligible speech before 5 years of age Maintaining age-appropriate language development

Children with auditory neuropathy/dysynchrony Approximately 10% of children with bilateral hearing loss (Thomson, Portnuff & Yoshinaga-Itano, 2005) Some children who once had otoacoustic emissions but have lost them Frequently poor hearing aid users – visual learners Some are candidates for cochlear implants

Children with unilateral hearing loss Children born with SN unilateral hearing loss who have progressed to SN bilateral hearing loss- 25% of unilateral population Asymmetrical hearing loss – Can have unusual configurations – rising configurations 30% of remaining unilaterals have significant language delays Typically have intelligible speech Etiologies unknown in 80% of cases

Children from non-English speaking families High proportion of later-identified High proportion of multiply disabled High proportion of auditory neuropathy/dysynchrony High proportion of genetic hearing loss Some cultures have consanguinity issues High proportion of ototoxicity Some cultures dispense ototoxic drugs over the counter (i.e. China, Mexico)

Children with multiple disabilities Increase in low birth weight premature infants Severe neurological/cognitive deficits Visual disabilities Emotional/behavioral disorders Learning Disabilities Autism/Spectrum Disorder

Deaf Education Reform Most children identified within the first few months of life More than 15,000 children identified each year and in intervention in the first 6 months Great intensity of service required in the first five years of life New populations: Children with minimal hearing loss to profound hearing loss, unilateral and bilateral, auditory neuropathy/dysynchrony

Need for intensive language instruction Need for intensive auditory/speech stimulation Need for Parent education – first five years of child’s life Need for single point of entry into intervention Need to provide similar service to all families no matter where they live Need for expert knowledge in hearing loss

Need for systems change Parent-infant programs Preschool programs Day schools – center-based programs Residential programs THE GOAL FOR: ACADEMIC/COMMUNICATION EXPECTATIONS – COMPARABILITY WITH HEARING PEERS

Accountability Assessments Consistency within state for assessment protocols Consistency nationally for assessment protocols Assessments that are necessary for intervention planning Goals guided by assessment data

Statewide developmental databases What teaching strategies work? Are there some developmental areas that require additional in-service training of teachers and parent-infant interventionists. What sub-populations require different teaching strategies? State statistics- incidence/prevalence Success of EHDI/UNHS programs

Single point of entry State Schools for the Deaf State-wide programs Infant programs Colorado enrolls almost 300 children birth through 36 months through the Colorado State School for the Deaf and Blind

Preschool-aged services would enroll approximately 300 more children Elementary school-aged children in center-based programs and residential programs is diminishing Programs for socialization Middle school/High school At-risk prevention for social/emotional issues

Residential placement Children requiring individualized and intensive educational instruction Multiply disabled Neurological/cognitive disabilities Motor disabilities Autism Social-emotional behavioral disorders

Challenge for Deaf Education Flexibility Adaptability Communication success Options Meeting diverse needs Rapid change

A is for Access Cheryl DeConde Johnson, Ed.D. Colorado Department of Education Achieving Authentic Accessibility for Students who are Deaf and Hard of Hearing Communication- driven High Standards Critical Mass Full Access

What does Communication Access Mean? Able to receive information Having language to identify what is received Interweave of cognition and language to derive meaning Able to actively participate in flow of conversation e.g., communication ease Communication access occurs when there is “shared meaning”.

The Faces of Deaf Education Modes of Communication listening/speaking………………………………………….visual/signing Languages English/Spanish (spoken)………American Sign Language (visual)

Change in Educational Placements- D/HH Students Ages 6-21 Source: US Dept of Ed., 24th Annual Report to Congress, Appendix A, Table AB2, 2002 Year <21% of time out of regular class 21-60% of time out of regular class >60% of time out of regular class Separate Facility %21%33.6%18.6% %19.7%28.1%22.7% CO 40.3% 65.7% 19.3% 8.4% 24.5% 14.6% 15.8% 11.1%

WE CAN MEET THE NEEDS OF THE NEW GENERATION OF CHILDREN WHO ARE DEAF OR HARD OF HEARING WILL WE ACCEPT THE CHALLENGE?