Transcript Entering Early Intervention Services

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?
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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 303.22)
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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 infant’s or toddler’s or family’s needs..
Which agency is responsible for
providing service coordination?
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Each state has its own system
Does the system account for the special needs of a child who
is D/HH?
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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?
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EHDI program staff
Part C staff
Child Find staff
School for the Deaf
Physician/s
Parents
A State Model of Service Coordination
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Basic competencies of the service coordinator
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Supports the values of the State ICC
Knowledge of IDEA
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The law and the entitlements it assures
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The values established by the ICC to guide implementation of the
law
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The early intervention system
Personal values and professional skills
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High quality support and services in natural environments
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Families as primary decision-makers
Early intervention process, supports, services
Proficiencies (knowledge and skills)
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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 local
agencies
Contacts family
Initiates data
management
Qualifications of the CO-Hear
Coordinator
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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
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CCC-A
CCC-SLP
Teacher of the D/HH
Responsibilities of the CO-Hear Coordinator
– to Support the EHDI Program
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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
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Hires and assists with training of new
interventionists
Supervises interventionists in the region
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Disseminates information
Organizes regional workshops
Monitors and reviews interventionists’ quarterly reports
Provides 1:1 mentoring to early interventionists
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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
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Providing information
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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.
2.
3.
4.
Join the family
Identify & support each family’s priorities
Provide information
Discuss & demonstrate communication
approaches
Supporting the Family
Joining the Family
Joining A Family
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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 child’s disability
Respond to the parents’ feelings
Assist family to identify support systems, plan for follow-through
Supporting the Family
Provide Information
 Identify & support each family’s priorities
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Addressing a Family’s Priorities
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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)
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Education: hearing loss
Education: comm. approaches
Websites, books, videos
Preparing for IFSP
Education: amplification/technology
97%
97%
95%
87%
82%
Information requested less frequently
(CHIP Facilitator Survey, May, 2003)
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Connecting family w/ other agencies
Attending audiology visits
Education: law
Connecting w/ D/HH role model
Connecting w/ family advocate
69%
51%
46%
41%
18%
Information and Resources Provided to
Families…
(CHIP Parent Survey; May, 2003)
Topics requested by 95% - 63% of families surveyed
95%
88%
84%
83%
81%
80%
72%
communication approaches
language development
speech development
sign language
hearing aids
functional auditory skill development
general development
Information and Resources
71%
68%
66%
64%
64%
63%
service coordination
Part C
parent groups
financial resources
appropriate play strategies and toys
private therapy
Supporting the Family
Discuss & demonstrate communication
approaches
Education about Communication
Approaches
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Materials are distributed
Demonstration of the approaches
Communication among family members
Commitment to an approach, changing an
approach
What makes a method successful?
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Early access
Full access
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The work that is applied to implement the method
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Multiple role models within the family
Multiple role models in the community
Incidental learning
Interventionist as teacher
Parent as learner
Parent commitment
Parental Decision Making & the Choice
of Communication Modality..
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Li, Bain, Steinberg; CHOP, 2002
Survey 83 parents: middle class, well-educated,
Caucasian
Demographics of the children
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Most children have severe-profound hearing
sensitivity
20 children received cochlear implants
Communication method used
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44 used a combination of speech and sign
30 used oral only
8 chose sign language only
Parental Decision Making..
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Most common factors that influence early
intervention decisions
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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
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Outcomes
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The child’s extent of hearing loss was the most influential
decision factor
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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
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”.
Features of Communication
adapted from K. Biernath, MD., 1999,
Centers for Disease Control
Audition
Speech
English
signs
(CASE,
MCE, PSE)
Gestures
,
English
Conceptual
Signs (ASL)
,
Speechreading
-
Fingerspelling
Visual
Phonics
/cued
speech
Speech
Visual
Phonics
/cued
speech
Speechreading
Speech
Gestures
,
,
Audition
Auditory-Oral
Audition
Auditory-Verbal
Speech
English
Speech
Speechreading
Finger
spelling
Conceptual
sign (ASL)
Gestures
Visual
Phonics
/cued
speech
Speechreading
English
signs
(PSE,MC,
CASE)
Audition
Audition
Bilingual
Fingerspelling
Gestures
Simultaneous
Communication
Implementing Service
Coordination
Expertise
Availability
Access
Recruiting and Training Hearing
Resource Coordinators
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Identify geographic regions
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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
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EHDI Advisory Committee
EHDI Task Forces
Document EHDI system for all stakeholders
(e.g., memos, phone conferences, etc)
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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
Coordinating with Part C –
Community Level
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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
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Regional workshops
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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)
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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)
Caseload
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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
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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
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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..
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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
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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
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Confirmed or borderline language delay
evidenced in 34% of the children
Is amplification helpful? (1:26 used
amplification)
Audiological management in light of:
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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
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Number of children identified with UHL
Cost of management
Skills required of professionals
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Professional expertise
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Service Coordination
Consultation
Direct services
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?
Colorado’s E.I. Treatment Plan for
UHL..
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Audiologists refer to Colorado Hearing Resource
(CO-Hear) Coordinator
CO-Hear Coordinator contacts family
CO-Hear Coordinator mails written information
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Brochure on UHL
Tips for parents of children with UHL
Fact sheet about UHL in young children (based on
Colorado’s pilot study)
Consent for assessment: when parents return the consent,
a screening packet will be sent to the parents at specific
intervals.
Treatment Plan
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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 COHear 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
Immediate provision of
information specific
to hearing loss
Target funding
for hearing loss from
state school for the deaf
Reducing parental
anxiety
Target funding
for hearing
loss from
EHDI initiative
For more information:
Arlene Stredler Brown, CCC-SLP, CED
PI, MCHB EHDI Grant
[email protected]
(303) 492-3037
Information available on the
CHIP webpage at:
www.csdb.org