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Entering Early Intervention Services: The Pivotal Role of the Service Coordinator

Entering Early Intervention Services: The Pivotal Role of the Service Coordinator. Arlene Stredler Brown, CCC-SLP, CED EHDI Conference - Washington, DC February, 2004. What’s in the box?. Children with hearing loss start early intervention by the time a child is 6 months of age

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Entering Early Intervention Services: The Pivotal Role of the Service Coordinator

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

  2. What’s 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

  3. IDEA Defines Service Coordination (Section 303.22) • 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

  4. IDEA further assures …. The identification of the service coordinator from the profession most immediately relevant to the infant’s or toddler’s or family’s needs..

  5. 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

  6. 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

  7. An Innovative Model of Service Coordination Hearing Resource Coordinators

  8. Transition from Diagnosis to Early Intervention Audiologist Confirms Hearing Loss Hearing Resource Coordinator is Contacted Initiates datamanagement Contacts local agencies Contacts family

  9. 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

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

  11. 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

  12. 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”

  13. 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

  14. Meeting the Critical Needs of Families..(CHIP, Clinical Training Manual, rev. 2003) • Join the family • Identify & support each family’s priorities • Provide information • Discuss & demonstrate communication approaches

  15. Supporting the Family Joining the Family

  16. 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

  17. 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 child’s disability Respond to the parents’ feelings Assist family to identify support systems, plan for follow-through

  18. Supporting the Family Provide Information Identify & support each family’s priorities

  19. Addressing a Family’s 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

  20. 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%

  21. 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%

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

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

  24. Supporting the Family Discuss & demonstrate communication approaches

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

  26. 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

  27. 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

  28. 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

  29. Parental Decision Making • Outcomes • The child’s 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 child’s 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

  30. 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”.

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

  32. Visual Phonics /cued speech Speech Speechreading Speech Gestures , , Audition Audition Auditory-Oral Auditory-Verbal

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

  34. Implementing Service Coordination Expertise Availability Access

  35. 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

  36. 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

  37. 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

  38. 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

  39. 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)

  40. The EHDI Service Coordinator Outcome Data

  41. Efficacy of CO-Hear Coordinator(CHIP Facilitator Survey, May, 2003) • Provides technical support 4.6 • Responds to requests promptly 4.3 • Is accessible to me and my families 4.6 • 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)

  42. 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

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

  44. 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

  45. 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%

  46. 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

  47. 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)

  48. 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

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