Entering%20Early%20Intervention%20Services:%20The%20Pivotal%20Role%20of%20the%20Service%20Coordinator

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Entering Early Intervention Services The Pivotal
Role of the Service Coordinator

• Arlene Stredler Brown, CCC-SLP, CED
• EHDI Conference - Washington, DC
• February, 2004

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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

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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

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

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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

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An Innovative Model of Service Coordination

• Hearing Resource Coordinators

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

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Credentials of the CO-Hear Coordinator

• CCC-A
• CCC-SLP
• Teacher of the D/HH

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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

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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 11 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

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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

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Meeting the Critical Needs of Families..
(CHIP, Clinical Training
Manual, rev. 2003)

• Join the family
• Identify support each familys priorities
• Provide information
• Discuss demonstrate communication approaches

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Supporting the Family

• Joining the Family

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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

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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
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Supporting the Family

• Provide Information
• Identify support each familys priorities

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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

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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

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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

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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

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Information and Resources

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

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Supporting the Family

• Discuss demonstrate communication approaches

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Education about Communication Approaches

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

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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

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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

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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

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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

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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.
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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
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Visual Phonics /cued speech
Speech
Speechreading
Speech
Gestures
,
,
Audition
Audition
Auditory-Verbal
Auditory-Oral
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Speech
Visual Phonics /cued speech
English
Speech
Speechreading
Finger spelling
Speechreading
Finger-spelling
English signs (PSE,MC, CASE)
Conceptual sign (ASL)
Gestures
Gestures
Audition
Audition
Simultaneous Communication
Bilingual
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Implementing Service Coordination

• Expertise
• Availability
• Access

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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

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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

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• 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

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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

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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)

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The EHDI Service Coordinator

• Outcome Data

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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)

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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

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Services to Children with UHL

• A Pilot Study
• (Sedey, Carpenter, Stredler-Brown, 2001)

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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

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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

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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 gt 80,000

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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)

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Implications of the Current Study

• Confirmed or borderline language delay evidenced
  in 34 of the children
• Is amplification helpful? (126 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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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?

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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.

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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

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Thinking Outside of the Box

• EHDI supports a
• disability-specific initiative
• newborn screening
• early diagnosis
• early start of intervention

Immediate provision of information specific to
hearing loss
Reducing parental anxiety
Target funding for hearing loss from EHDI
initiative
Target funding for hearing loss from state
school for the deaf
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For more information
Arlene Stredler Brown, CCC-SLP, CED PI, MCHB EHDI
Grant arlene.brown_at_colorado.edu (303)
492-3037 Information available on the CHIP
webpage at www.csdb.org