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

arlene.brown@colorado.edu(303) 492-3037

Information available on the CHIP webpage at:www.csdb.org