Entering Early Entering Early Intervention Services: Intervention Services: The Pivotal Role of The Pivotal Role of the Service the Service Coordinator Coordinator Arlene Stredler Brown, CCC-SLP, CED EHDI Conference - Washington, DC February, 2004
Mar 27, 2015
Entering Early Intervention Entering Early Intervention Services: The Pivotal Role of Services: The Pivotal Role of the Service Coordinatorthe 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 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)
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 coordinatorfrom the profession most immediately relevant to the infant’s or toddler’s or family’s 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 CoordinationHearing Resource Coordinators
Transition from Diagnosis to Early Intervention
Audiologist Confirms Hearing Loss
Hearing Resource Coordinator is ContactedHearing 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 family’s priorities
3. Provide information
4. Discuss & demonstrate communication approaches
Supporting the FamilyJoining 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 StageStart off Well – Social Stage
Find out how much the parents knowFind out how much the parents know
Find out how much the parents Find out how much the parents wantwant to know to know
Family shares information & defines their child’s disabilityFamily shares information & defines their child’s disability
Respond to the parents’ feelingsRespond to the parents’ feelings
Assist family to identify support systems, plan for follow-throughAssist family to identify support systems, plan for follow-through
Supporting the Family Provide Information Identify & support each family’s priorities
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
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 approaches88% 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 Resources71% service coordination
68% Part C
66% parent groups
64% financial resources
64% appropriate play strategies and toys
63% private therapy
Supporting the FamilyDiscuss & 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 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
Parental Decision Making
Recommendation: Professionals should routinelyinquire about parents’ needs, values, beliefs, and preferences. Referrals made in the context of parental preferences will likely yield improved compliance withtreatment recommendations”.
,,
-
English
Audition
Finger-spellin
g
English signs (CASE, MCE, PSE)
Visual Phonics /cued speech
Conceptual Signs (ASL)
GesturesSpeec
h
Speechreading
Features of Communication adapted from K. Biernath, MD., 1999,
Centers for Disease Control
,
,
Audition
Speech
Audition
Auditory-Verbal
Auditory-Oral
Gestures
Speechreading
Speech
Visual Phonics /cued speech
Finger spelling
Bilingual
Conceptual sign
(ASL)Gestures
Speechreading
Speech
AuditionGestures
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 community’s 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 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 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 UHLA 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?
Colorado’s 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
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 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 fromstate school for the deaf
Immediate provision of information specific to hearing loss
Reducing parental anxiety
For more information:
Arlene Stredler Brown, CCC-SLP, CEDPI, MCHB EHDI Grant
[email protected](303) 492-3037
Information available on the CHIP webpage at:www.csdb.org