A Bay Area Model Program: Family Centered Early Intervention · The CEID Team Toddler & Preschool Pediatric Residency Training Sunshine Preschool & Childcare First Step: California

UCSF Developmental Disabilities Conference

Communication Options 

A Bay Area Model Program:Family Centered Early Intervention 

Jill Ellis, M.Ed.

Founder

Center for Early Intervention on Deafness

.    

Disclaimer

I have nothing to disclose.

What is CEID? The Hearing Society & First Congregational Church

Student photos 

NHS in the 1970’s & 1980’s  

Average age of ID: 2.5 years No state NHS

50% unknown etiology

1/2000 babies

Body hearing aids

No Early Start 

1035 Grayson Street West Berkeley

Services available at CEID Home Visits  Parent‐Child Playgroups

Sign Language Deaf‐Blind Listening & Spoken Language

Down Syndrome Toddler & Preschool Classes

Deaf Mentors Family Support Activities Speech Therapy Occupational Therapy First 5 – Home Visit (3‐5)

Comprehensive Audiology

Diagnostic and Dispensing   Community Hearing Screenings

Pediatric Provider Training

Other Consulting Charter Schools Medical Providers Early Start Professionals

The CEID TeamToddler & Preschool 

Pediatric Residency Training Sunshine Preschool & Childcare

First Step: California NHS Program: Legislation AB2780 (passed 1998 – December 2002 full implementation) NHSP: Assembly Bill 2780, Chapter 310, Statutes of 1998. Required: 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. 

Department of Health Care Services (DHCS), specifically the Children's Medical Services (CMS), holds responsibility for the implementation and oversight of this program

1‐3‐6 Goals  70% of babies  (400,000 of 520,000 births) 

** 1993: Early Start implemented in California

California NHSP

Hearing Coordination Center Staff Director

Registered Nurse

Audiologist (Paneled)

Administrative Support

Parent Advocate

IT Support

Screen all infants FDA approved to screen hearing 

Must be capable of detecting mild hearing loss (30‐40 dB)

Hearing Coordination Centers (HCCs)NHSP:  1‐877‐388‐5301 

Bay Area/Northern Cal HCC (Region A & B  yellow and white)

800‐645‐3616 #3

Southern California HCC 

(Region D ‐ blue)  

866‐609‐5439

South Eastern California HCC‐ Loma Linda Medical Center (pink)

877‐388‐5301

Referral and Eligibility  Ages 0‐5 who are deaf or hard of hearing (DHH)

Any type or degree (including unilateral, mild, moderate, severe, profound, auditory neuropathy, conductive, sensorineural, mixed, or fluctuating)

A child who has a severe language delay and needs a visual language

A child who qualifies for IDS with ASL as their home language  

A child who is High Risk

Faces at CEID

8 student faces 

Family Support Home Visits 

Hearing Support Early Special Education

Family Events Swimming at Silliman; Day at Crab Cove; Camping; Deaf Plus Family Picnic; Kindergym; Habitot

Parent Education Sign Classes; Support Groups; Speech and Language Topics Panels: High School Students, Parents, Deaf Adults Parenting Strategies; Storytelling; Importance of Play! Understanding IFSPs and IEPs

Parent‐Identified Essentials of Appropriate Early Intervention

Contact with other parents Unbiased information Time to process 

information Skillful and supportive 

professionals

Parents and Their Deaf Children: The Early YearsKathryn P. Meadow‐Orlans ‐Marilyn Sass‐Lehrer ‐ Donna M. Mertens –Gallaudet University Press ‐ 2003

DHH Specialized Instruction Topics Understanding hearing loss: cause, prognosis, and  impact on the child and family

Reading an audiogram

Decision making regarding communication options 

Language instruction services including: teaching American Sign Language (ASL), Signed Exact English (SEE), Cued Speech, and auditory/oral language (IDEA 303.13(b)(12)).

Visual technologies, including alerting systems, safety systems, and communication technologies

Adapting the home to make it a visual environment.

DHH Specialized Instruction Topics

Hearing aid care, maintenance, tolerance, monitoring, and troubleshooting

Cochlear implant decision making, candidacy process, preparation, use, care, maintenance, follow‐up

FM System use, care, decision making

Cognitive development issues related to hearing loss

Emergent literacy in deaf and hard of hearing children

Social–emotional development and identity issues.

Deaf/Hard of Hearing Specialized Instruction Topics

Deaf culture and communities

Advocacy and empowerment issues related to hearing loss

Current research in deaf education

Special concerns related to mild, unilateral, and conductive hearing losses

The synergistic effect of hearing loss and other disabilities, including visual, motor, social, or cognitive impairments

Communication Possibilities

Listening and Spoken Language

Cued Speech

American Sign Language (ASL)

Signing Exact English (SEE) 

Conceptually Accurate Signed English

Sign Supported Speech

Total Communication (TC)

Bi‐Lingual/Bi‐Cultural

Toddler Class Music Time: Parents and Children in Action  Video 

Deaf Plus & SENSORY INTEGRATION 

The ability to take in sensory information from one’s body and the environment, to organize this information, and to use it to function in daily life

A Sensory Diet incorporates: 

TactileProprioceptive

Vestibular

Student/class photo 

Tactile:Light Touch:  Deep Touch:

Bear hugs; 

Bouncing a big ball on a child  2 students with different 

experiences 

Accommodations in Classroom and Therapy SessionsSalient Considerations for a child who is Deaf Plus:

**  Positioning/Motor    Control

Processing Time

Attention

Eye Contact 

Peer Lead Speech Therapy‐ Preschool 

Video with Ron and Izzy

Audiology Services • Hearing Screenings

– For infants under 3 months old who have been referred from an initial screening or who have never received a screening

– Preschool students (HeadStart, Private Preschools)

• Diagnostic Hearing Evaluations

– For children and adults

• Hearing Aid Dispensing

–Hearing aids and devices, ear molds, hearing aid accessories

Alameda Sacramento

Butte (158 miles/2hrs 39 mins) San Francisco

Calaveras (118 miles/2hrs 3 mins) San Joaquin

Contra Costa San Mateo

El Dorado (115 miles/1hr 51 mins) Shasta (213 miles/3hrs 8 mins)

Fresno (181 miles/2hrs 47mins) Solano

Kern (291 miles/4hrs 32mins) Sonoma

Lake (133 miles/2hrs 26mins) Stanislaus (89.6 miles/1hr 31mins)

Mendocino (155 miles/2hrs 53 mins) Sutter (112 miles/1hr 55mins)

Monterey Yolo (77.6 miles/1hr 14mins)

Napa Yuba (109 miles/1hr 51mins)

Placer

& Rising Harte Wellness CenterA Collaborative Model for Alameda County

School‐linked health center and collaboration serving students at Bret Harte Middle School and Transition Age Youth (young adults, ages 16‐25) 

Almost 50% of BHMS students and 87% of transition age youth report experiencing barriers to accessing adequate, affordable, and competent health care.

Screening for key risk factors Provision of treatment and services Preventative services and dental 

examinations Health education, recreation and social 

programs Case management and linkage

CEID Fundraising Activities Annual Walk‐A‐Thon Benefit Golf Tournament

Add photo Add photo 

Ron’s Message on Behalf of CEID Ron’s personal Bio and video clip

CEID Publications Pediatric Resource Guide to Infant and Childhood Hearing Loss 

CI Prep 

DVD

Book

Home Visit Kit Photo of GUIDE cover 

Thank You!

Photo of 3

          References from:     Jill Ellis, M.Ed. 

1035 Grayson Street, Berkeley, CA    www.ceid.org    510‐848‐4800  

Akinpelu, O. V., Peleva, E., Funnell, W. R., & Daniel, S. J. (2014). Otoacoustic emissions in newborn hearing screening: A systematic review of the effects of different protocols on test outcomes. International Journal of Pediatric Otorhinolaryngology, 78(5), 711-717. doi:10.1016/j.ijporl.2014.01.021 [doi]

Alford, R. L., Arnos, K. S., Fox, M., Lin, J. W., Palmer, C. G., Pandya, A., et al. (2014). American college of medical genetics and genomics guideline for the clinical evaluation and etiologic diagnosis of hearing loss. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 16(4), 347-355. doi:10.1038/gim.2014.2 [doi]

American Academy of Audiology Clinical Practice Guidelines. (2011). Childhood Hearing Screening Guidelines. [Guidelines]. Retrieved from

www.asha.org/Practice-Portal/Professional-Issues/Newborn-Hearing-Screening

American Academy of Pediatrics, Joint Committee on Infant Hearing. (2007). Year 2007 position statement: Principles and guidelines for early hearing detection and intervention programs. Pediatrics, 120(4), 898-921. doi:120/4/898 [pii]

American Academy of Pediatrics. (1995). Joint Committee of Infant Hearing 1994 Position Statement. Pediatrics, 95 (1), 152-156.

American Academy of Pediatrics. (1996). Committee on Genetics, Newborn Screening Fact Sheets. Pediatrics, 98(3), 473-501.

American Speech-Language-Hearing Association. (2008). Guidelines for audiologists providing informational and adjustment counseling to families of infants and young children with hearing loss birth to 5 years of age [Guidelines]. Retrieved from www.asha.org/policy/GL2008-00289/

American Speech-Language-Hearing Association. (2015). Expert panel recommendations on Newborn Hearing Screening. Retrieved from www.asha.org/Topics/Expert-Panel-Recommendations-on-Newborn-Hearing-Screening/#3

Beck, R. (December, 2014). Etiology of Single Sided Deafness in Children with Congenital and Acquired Unilateral Deafness. Presentation at American Cochlear Implant Alliance. Nashville, Tennessee.

Berg, A. L., Prieve, B. A., Serpanos, Y. C., & Wheaton, M. A. (2011). Hearing screening in a well-infant nursery: Profile of automated ABR-fail/OAE-pass. Pediatrics, 127(2), 269-275.

Berlin, C., Hood, L., Morlet, T., Wilensky, D., Li, L., Mattingly, K. R., & Frisch, S. A. (2010). Multi-site diagnosis and management of 260 patients with Auditory Neuropathy/Dys-synchrony (Auditory Neuropathy Spectrum Disorder*). International Journal of Audiology, 49 (1): 30-43.

Bielecki, I., Horbulewicz, A., & Wolan, T. (2012). Prevalence and risk factors for auditory neuropathy spectrum disorder in a screened newborn population at risk for hearing loss. International Journal of Pediatric Otorhinolaryngology, 76(11), 1668-1670. doi:10.1016/j.ijporl.2012.08.001 [doi]

Center for Disease Control and Prevention (2014). Summary of 2012 national CDC EHDI data. Retrieved from http://www.cdc.gov/ncbddd/hearingloss/2012data/2012_ehdi_hsfs_summary_b.pdf

Centers for Disease Control and Prevention (2015). Risk of Bacterial Meningitis in Children with Cochlear Implants. Retrieved from http://www.cdc.gov/ncbddd/hearingloss/meningitis.html

Centers for Disease Control and Prevention. (2011). Cytomegalovirus (CMV) infection. Retrieved from www.cdc.gov/cmv/index.html .

Centers for Disease Control and Prevention. (2015). Hearing loss in children. Retrieved from http://www.cdc.gov/ncbddd/hearingloss/index.html

Centers for Disease Control and Prevention. (2015). Recommendations and Guidelines. Retrieved from http://www.cdc.gov/ncbddd/hearingloss/recommendations.html

Cincinnati Children’s (n.d.) Genetic Testing for Hearing Loss. Retrieved April 20, 2015 from http://www.cincinnatichildrens.org/service/g/genetic-hearing-loss/tests/

deVries, J. J. C., Vossen, A. C. T. M., Kroes, A. C. M., & van der Zeijst, B. A. M. (2011). Implementing neonatal screening for congenital cytomegalovirus: Addressing the deafness of policy makers. Reviews in Medical Virology, 21, 54-61.

Ferm, I., Lightfoot, G., & Stevens, J. (2013). Comparison of ABR response amplitude, test time, and estimation of hearing threshold using frequency specific chirp and tone pip stimuli in newborns. International Journal of Audiology,52(6), 419-423.

Flexer, C. (2011, March 14). The Auditory Brain: Conversations for Pediatric Audiologists [Webinar]. In Pediatric Audiology - Raising the Bar. Retrieved from http://www.audiologyonline.com/articles/auditory-brain-conversations-for-pediatric-817

Fligor, B. J., Neault, M. W., Mullen, C. H., Feldman, H. A., & Jones, D. T. (2005). Factors associated with sensorineural hearing loss among survivors of extracorporeal membrane oxygenation therapy. Pediatrics, 115(6), 1519-1528. doi:10.1542/peds.2004-0247

Foust, T., Eiserman, W., Shisler, L., & Geroso, A. (2013). Using otoacoustic emissions to screen young children for hearing loss in primary care settings. Pediatrics, 132(1), 118-123. doi:10.1542/peds.2012-3868 [doi]

Fowler, K. B. (2013). Congenital cytomegalovirus infection: Audiologic outcome. Clinical Infectious Diseases: An Official Publication of the Infectious Diseases Society of America, 57 Suppl 4, S182-4. doi:10.1093/cid/cit609 [doi]

Gallegos, (1997-98) California Assembly Bill 2780, Section 21. Retrieved from http://www.leginfo.ca.gov/pub/97-98/bill/asm/ab_2751-2800/ab_2780_bill_19980819_chaptered.pdf

Gravel, J. (June 2004). Mild and Unilateral Hearing Loss. Presentation at 2nd International Conference on Newborn Hearing Screening. Como, Italy.  

Holte, L., Walker, E., Oleson, J., Spratford, M., Moeller, M. P., Roush, P., Tomblin, J. B. (2012). Factors influencing follow-up to newborn hearing screening for infants who are hard of hearing. American Journal of Audiology, 21, 163-174.

Hyde, M. (2010). Principles and methods of population hearing screening in EDHI. In R. Seewald & A. M. Tharpe (Eds.), Comprehensive handbook of pediatric audiology (pp. 283-338). San Diego, CA: Plural.

Jackson, C., Wegner, J. R., Turnbull, A. P., (2010) Family Quality of Life Following Early Identification of Deafness. Language Speech Hearing Services in Schools. 41(2):194-205.

Johnson, K., Lloyd-Puryear, M. A., Mann, M. Y., & Ramos, L. R. (2006). Financing state newborn screening programs: Sources and uses of funds. Pediatrics, 117(Suppl. 3), S270-S279.

Joint Committee on Infant Hearing, American Academy of Audiology, American Academy of Pediatrics, American Speech-Language-Hearing Association, & Directors of Speech and Hearing Programs in State Health and Welfare Agencies. (2000). Year 2000 position statement: Principles and guidelines for early hearing detection and intervention programs. Pediatrics, 106(4), 798-817.

Joint Committee on Infant Hearing, Muse, C., Harrison, J., Yoshinaga-Itano, C., Grimes, A., Brookhouser, P. E., et al. (2013). Supplement to the JCIH 2007 position statement: Principles and guidelines for early intervention after confirmation that a child is deaf or hard of hearing. Pediatrics, 131(4), e1324-e1349. doi:10.1542/peds.2013-0008

Joint Committee on Infant Hearing. (2007). Year 2007 position statement: Principles and guidelines for early hearing detection and intervention programs. Pediatrics, 120(4), 898- 921.

Joint Committee on Infant Hearing: www.jcih.org

Model Universal Newborn/Infant Hearing Screening, Tracking, and Intervention Bill. American Speech-Language-Hearing Association, Retrieved from http://www.asha.org/advocacy/federal/ehdi/model_bill/

Moeller, M. P. (2000). Early intervention and language development in children who are deaf and hard of hearing. Pediatrics, 106(3), E43.

Moeller, M. P., White, K. R., & Shisler, L. (2006). Primary ear physicians' knowledge, attitudes, and practices related to newborn hearing screening. Pediatrics, 118, 1357- 1370.

Moeller, M.P (2008). Update on Newborn Hearing Screening [Power Point slides.] Retrieved from http://www.babyhearing.org/Audiologists/presentation/index.asp

National Association of the Deaf. (2010) Position Statement on early intervention for infants and toddlers. Retrieved from http://www.nad.org/issues/early-intervention

National Center for Hearing Assessment & Management. (2015). Enacted universal newborn hearing screening legislation. Retrieved from www.infanthearing.org/legislative/mandates.html

National Conference of State Legislators (2011). Newborn hearing screening laws. Retrieved from http://www.ncsl.org/research/health/newborn-hearing-screening-state-laws.aspx#State_Laws

Norrix, L. W., & Velenovsky, D. S. (2014). Auditory neuropathy spectrum disorder: A review. Journal of Speech, Language, and Hearing Research: JSLHR, 57(4), 1564-1576. doi:10.1044/2014_JSLHR-H-13-0213 [doi]

Penido, R. C., & Isaac, M. L. (2013). Prevalence of auditory neuropathy spectrum disorder in an auditory health care service. Brazilian Journal of Otorhinolaryngology, 79(4), 429-433. doi:10.5935/1808-8694.20130077 [doi]

Petitto, L.A., (2012). Visual language and visual learning. Gallaudet University Press Retrieved from http://petitto.gallaudet.edu.

Pipp-Siegel, S., Sedey, A.L., Yoshinaga-Itano, C., (2002). Predictors of Parental Stress in Mothers of Young Children with Hearing Loss. Journal of Deaf Studies and Deaf Education, 7(1);1-17.

Reinfeldt, S., Hakansson, B., Taghavi, H., & Eeg-Olofsson, M. (2015). New developments in bone-conduction hearing implants: A review. Medical Devices (Auckland, N.Z.), 8, 79-93. doi:10.2147/MDER.S39691 [doi]

Reinfeldt, S., Hakansson, B., Taghavi, H., Freden Jansson, K. J., & Eeg-Olofsson, M. (2015). The bone conduction implant: Clinical results of the first six patients. International Journal of Audiology, 1-9. doi:10.3109/14992027.2014.996826 [doi]

Sennaroglu, L., & Ziyal, I. (2012). Auditory brainstem implantation. Auris, Nasus, Larynx, 39(5), 439-450. doi:10.1016/j.anl.2011.10.013 [doi]

Shargorodsky, J., Curhan, S. G., Curhan, G. C., & Eavey, R. (2010). Change in prevalence of hearing loss in US adolescents. Jama, 304(7), 772-778. doi:10.1001/jama.2010.1124 [doi]

Shearer, A. E., Black-Ziegelbein, E. A., Hildebrand, M. S., Eppsteiner, R. W., Ravi, H., Joshi, S., et al. (2013). Advancing genetic testing for deafness with genomic technology. Journal of Medical Genetics, 50(9), 627-634. doi:10.1136/jmedgenet-2013-101749 [doi]

Sininger, Y., & Starr, A. (2001). Auditory neuropathy: A new perspective on hearing disorders. San Diego, Calif.: Singular Thomson Learning. Retrieved from http://isbndb.com

Smiechura, M., Struzycka, M., & Konopka, W. (2014). Congenital and acquired cytomegalovirus infection and hearing evaluation in children. Otolaryngologia Polska.the Polish Otolaryngology, 68(6), 303-307. doi:10.1016/j.otpol.2014.04.003 [doi]

Sommen, M., & Van Camp, G. (2013). Genetic diagnostics of early childhood hearing loss: Better testing with next-generation DNA sequencing. B-Ent, Suppl 21, 51-56. Retrieved from http://eutils.ncbi.nlm.nih.gov

Stich-Hennen, J., Bargen, G., (2015). Risk Monitoring for Delayed-Onset Hearing Loss. In L. R. Schmeltz (Ed.), A Resource guide for early hearing detection and intervention (1-20). Retrieved from http://www.infanthearing.org/ehdi-ebook/

Stredler-Brown, A. (2002) Developing a Treatment Program for Children with Auditory Neuropathy. Seminars in Hearing, 23(3):239-249.

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Todd, N., McCollister, F., (2015). Cytomegalovirus & Hearing Impairment. In L. R. Schmeltz (Ed.), A Resource guide for early hearing detection and intervention (1-8). Retrieved from http://www.infanthearing.org/ehdi-ebook/

Turner, K. M., Lee, H. C., Boppana, S. B., Carlo, W. A., & Randolph, D. A. (2014). Incidence and impact of CMV infection in very low birth weight infants. Pediatrics, 133(3), e609-15. doi:10.1542/peds.2013-2217 [doi]

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Walker, E.A., Holte L., Spratford, M., Oleson, J., Welhaven, A., Harrison, M. (2014). Timeliness of Service Delivery for Children With Later-Identified Mild-to-Severe Hearing Loss. American Journal of Audiology, 23 (1):116-128. Walker, E.A., Spratford, M., Moeller, M.P., Oleson, J., Ou, H., Roush, P., Jacobs, S., (2013). Predictors of Hearing Aid Use Time in Children with Mild-to-Severe Hearing Loss. Language, Speech, and Hearing Services in Schools, 44: 73-78.

Watkin, P. M., & Baldwin, M. (2011). Identifying deafness in early childhood: Requirements after the newborn hearing screen, Archives of Disease in Childhood, 96, 62-66.

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White K., Et al., (2010) The evolution of early hearing detection and intervention programs in the United States. Seminars in Perinatology. 34(2):170–179. Widen, J., et al. (2009). Update on the Joint Committee on Infant Hearing Activities [PowerPoint

slides]. Retrieved from: http://www.infanthearing.org/meeting/ehdi2009/EHDI%202009%20Presentations/145.pdf

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Sensorineural Hearing Loss in a Highly Immune Population. Pediatric Infectious Disease Journal, 30(12), 1043–1046. doi:10.1097/INF.0b013e31822d9640

Yan, D., Tekin, M., Blanton, S. H., & Liu, X. Z. (2013). Next-Generation Sequencing in Genetic Hearing Loss. Genetic Testing and Molecular Biomarkers, 17(8), 581–587. doi:10.1089/gtmb.2012.0464

Yoshinaga-Itano, C. (2014). Principles and guidelines for early intervention after confirmation that a child is deaf or hard of hearing. Journal of Deaf Studies and Deaf Education, 19(2), 143-175. doi:10.1093/deafed/ent043 [doi]

Yoshinaga-Itano, C., DeConde Johnson, C., Carpenter, K., & Stredler Brown, A. (2008). Outcomes of children with mild bilateral hearing loss and unilateral hearing

Yousefi, J., Ajalloueyan, M., Amirsalari, S., & Hassanali Fard, M. (2013). The Specificity and Sensitivity of Transient Otoacustic Emission in Neonatal Hearing Screening Compared with Diagnostic Test of Auditory Brain Stem Response in Tehran Hospitals. Iranian Journal of Pediatrics, 23(2), 199–204.

Yu,J., Ng, I., Kam, A., Wong,T., Wong,E., Tong,.M., Yu,H., Yu, K.,(2010. The Universal Neonatal Hearing Screening (UNHS) Program in Hong Kong: The Outcome of a Combined Otoacoustic Emissions and Automated Auditory Brainstem Response Screening Protocol. Hong Kong Journal of Paediatrics, 15:2-11.

American Society for Deaf Children:  www.deafchildren.org   

The National Dissemination Center for Children with Disabilities (NICHCY)  

1825 Connecticut Ave NW, 

Washington, DC 20009  Phone: 1‐800‐695‐0285 (V/TTY). E‐mail: [email protected] Web site in 

English: www.nichcy.org. Website in Spanish: nichcy.org/espanol/  

California Newborn Hearing Screening (NHSP) 

Toll Free: 1‐877‐388‐5301 

 Regions A & B 

Bay Area/Northern California Hearing Coordination Center (BA/NCHCC)

1501 Industrial Road San Carlos, CA 94070

Phone: 800-645-3616, Press #3 Fax Number: 800-866-1074

E-mail: [email protected]

Region C 

South Eastern California Hearing Coordination Center (SECHCC)

1200 California St. Suite 108 Redlands, CA 92374

Phone: 909-793-1291 Fax: (909) 498-7982

Toll Free: 1-877-388-5301 Email: [email protected]

Region D 

Southern California Hearing Coordination Center (SCHCC)

1 Centerpointe Drive, Suite 410 La Palma, CA 90623

Phone: (661) 591-4300 Fax: (661) 244-2865

Toll Free: (866) 609-5439 E-mail: [email protected]