Entering Early Intervention Services: The Pivotal Role of the Service Coordinator Arlene Stredler Brown, CCC-SLP, CED EHDI Conference - Washington, DC February, 2004

Whats in the box? Children with hearing loss start early intervention by the time a child is 6 months of age The child has a medical home, the physician provides support and is aware of the impact of hearing loss Child Find can appropriately assess the communication needs of a child who is D/HH The dedicated service coordinator (identified through the Part C system) assures families receive the information they need Categorical programs for children who are D/HH coordinate services with the state Part C initiative

IDEA Defines Service Coordination (Section ) Coordinating services across agency lines Serving as the single point of contact in helping parents to obtain the services and assistance they need Assisting parents in gaining access to early intervention services and other services identified in the IFSP Coordinating the provision of early intervention services and other services Facilitating the timely delivery of available services Continuously seeking the appropriate services

IDEA further assures …. The identification of the service coordinator from the profession most immediately relevant to the infants or toddlers or familys needs..

Which agency is responsible for providing service coordination? Each state has its own system Does the system account for the special needs of a child who is D/HH? identifying services and assistance they need gaining access to early intervention services continuously seeking the appropriate services Serving as the single point of contact in helping parents to obtain the services and assistance they need Who are the stakeholders? EHDI program staff Part C staff Child Find staff School for the Deaf Physician/s Parents

A State Model of Service Coordination Basic competencies of the service coordinator Supports the values of the State ICC Knowledge of IDEA The law and the entitlements it assures The values established by the ICC to guide implementation of the law The early intervention system Personal values and professional skills High quality support and services in natural environments Families as primary decision-makers Early intervention process, supports, services Proficiencies (knowledge and skills) Development of infants and toddlers with disabilities Families of young children with special needs

An Innovative Model of Service Coordination Hearing Resource Coordinators

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

Meeting the Critical Needs of Families.. (CHIP, Clinical Training Manual, rev. 2003) 1.Join the family 2.Identify & support each familys priorities 3.Provide information 4.Discuss & demonstrate communication approaches

Supporting the Family Joining the Family

Joining A Family Partner with parents to understand their child versus the disorder Develop trust Listen! - listen for content Tolerate silences Observe – notice non-verbal cues Limit use of professional jargon Use open-ended questions Provide information that is requested Identify family members and those with influence

Creating a Partnership Start off Well – Social Stage Find out how much the parents know Find out how much the parents want to know Family shares information & defines their childs disability Respond to the parents feelings Assist family to identify support systems, plan for follow-through

Supporting the Family Provide Information Identify & support each familys priorities

Addressing a Familys Priorities This starts at the time the diagnosis is made. Indeed, for some families, this starts when the child initially fails the hearing screen Clinical Training Manual, rev. 2003

Information most frequently requested (CHIP Facilitator Survey, May, 2003) Education: hearing loss 97% Education: comm. approaches 97% Websites, books, videos 95% Preparing for IFSP 87% Education: amplification/technology 82%

Information requested less frequently (CHIP Facilitator Survey, May, 2003) Connecting family w/ other agencies 69% Attending audiology visits 51% Education: law 46% Connecting w/ D/HH role model 41% Connecting w/ family advocate 18%

Information and Resources Provided to Families… (CHIP Parent Survey; May, 2003) 95% communication approaches 88% language development 84% speech development 83% sign language 81% hearing aids 80% functional auditory skill development 72% general development Topics requested by 95% - 63% of families surveyed

Information and Resources 71% service coordination 68% Part C 66% parent groups 64% financial resources 64%appropriate play strategies and toys 63% private therapy

Supporting the Family Discuss & demonstrate communication approaches

Education about Communication Approaches Materials are distributed Demonstration of the approaches Communication among family members Commitment to an approach, changing an approach

What makes a method successful? Early access Full access Multiple role models within the family Multiple role models in the community Incidental learning The work that is applied to implement the method Interventionist as teacher Parent as learner Parent commitment

Parental Decision Making & the Choice of Communication Modality.. Li, Bain, Steinberg; CHOP, 2002 Survey 83 parents: middle class, well-educated, Caucasian Demographics of the children Most children have severe-profound hearing sensitivity 20 children received cochlear implants Communication method used 44 used a combination of speech and sign 30 used oral only 8 chose sign language only

Parental Decision Making.. Most common factors that influence early intervention decisions Recommendations of professionals Availability of services close to home Availability of services provided by local school district Recommendations of friends Cost of services

Parental Decision Making Outcomes The childs extent of hearing loss was the most influential decision factor Odds of parents with a child with moderate loss to choose oral only were 176 times higher than the odds for a child with profound loss Parental value on the childs ability to speak rather than sign was the second most important predictive factor Parental cognitive/attitudinal factors were important in the inclination to favor an oral approach - if they felt that deafness can and should be corrected, and if they desire the child to be able to speak

Parental Decision Making Recommendation: Professionals should routinely inquire about parents needs, values, beliefs, and preferences. Referrals made in the context of parental preferences will likely yield improved compliance with treatment recommendations.

,, - English Audition Finger- spelling English signs (CASE, MCE, PSE) Visual Phonics /cued speech Conceptual Signs (ASL) Gestures Speech Speechreading Features of Communication adapted from K. Biernath, MD., 1999, Centers for Disease Control

,, Audition Speech Audition Auditory-VerbalAuditory-Oral Gestures Speechreading Speech Visual Phonics /cued speech

Finger spelling Bilingual Conceptual sign (ASL) Gestures Speechreading Speech Audition Gestures Speechreading Finger- spelling Speech Simultaneous Communication Audition English signs (PSE,MC, CASE) Visual Phonics /cued speech English

Implementing Service Coordination Expertise Availability Access

Recruiting and Training Hearing Resource Coordinators Identify geographic regions Number of children with hearing loss Realistic driving range Familiarity with the communitys 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)

The EHDI Service Coordinator Outcome Data

Efficacy of CO-Hear Coordinator (CHIP Facilitator Survey, May, 2003) Provides technical support4.6 Responds to requests promptly4.3 Is accessible to me and my families4.6 Keeps me informed about trainings 4.4 Is knowledgeable about early intervention for D/HH children 4.8 (All results are reported as means on a 5-point Leikert Scale)

Caseload One FTE provides service coordination to 40+ families. These children have bilateral hearing loss and are receiving direct, ongoing early intervention services. Role of Hearing Resource Coordinator for children identified with a UHL is evolving

Services to Children with UHL A Pilot Study (Sedey, Carpenter, & Stredler-Brown, 2001)

Unilateral to Bilateral Loss 30 children initially identified with unilateral loss 2 (7%) progressed to bilateral within first year of life 2 (7%) later diagnosed with bilateral losses that apparently were present from birth One mild (30dB) in poorer ear One moderate low frequency loss with normal high frequency hearing

Summary of Language Results Reviewed assessments conducted after 12 months of age Children had no additional disabilities Number of children with language delays Delayed = 27% Borderline = 7%

Profile of Children with Delays.. Caucasian Identified by 2 months of age Hearing loss is congenital Etiology unknown Parents use oral communication only Parental education 16 years or more Annual income > $80,000

Profile of Children with Delays No outer or middle ear malformation Affected ear: 50% right, 50% left Degree of loss: All severe or profound (e.g., no response on ABR)

Implications of the Current Study Confirmed or borderline language delay evidenced in 34% of the children Is amplification helpful? (1:26 used amplification) Audiological management in light of: possible progression missed identification of bilateral hearing loss fluctuating loss in good ear due to middle ear fluid

Issues to Consider when Developing Statewide Services for Children with UHL Number of children identified with UHL Cost of management Skills required of professionals Service Coordination Consultation Direct services Professional expertise Service Coordination from Hearing Resource Coordinator Audiologists: educational, clinical Early Interventionists Is there a need for services? If so, when do they start? What is included?

Colorados E.I. Treatment Plan for UHL.. Audiologists refer to Colorado Hearing Resource (CO-Hear) Coordinator CO-Hear Coordinator contacts family CO-Hear Coordinator mails written information Brochure on UHL Tips for parents of children with UHL Fact sheet about UHL in young children (based on Colorados pilot study) Consent for assessment: when parents return the consent, a screening packet will be sent to the parents at specific intervals.

Treatment Plan Periodic screening for development beginning at 15 months of age (Subtests of Minnesota CDI; MacArthur CDI) Referral to state data management system Services available from the Parent Consultant for UHL As parents have questions, they can contact the CO- Hear Coordinator Involve educational audiologists (statewide system) Educate physicians, clinical audiologists

Thinking Outside of the Box EHDI supports a disability-specific initiative newborn screening early diagnosis early start of intervention Target funding for hearing loss from EHDI initiative Target funding for hearing loss from state school for the deaf Immediate provision of information specific to hearing loss Reducing parental anxiety

For more information: Arlene Stredler Brown, CCC-SLP, CED PI, MCHB EHDI Grant (303) Information available on the CHIP webpage at: