Collecting Early Intervention Data

2005 National EHDI Conference

Atlanta, Georgia

Anne M. Jarrett, MA- CCCAFollow-up Consultant

Michigan Department of Community Health/

Early Hearing Detection and Intervention Program

Guidance to States in collection EI data

National EHDI Goals Data Committee

Part of a tracking and surveillance system

State Guidelines Michigan: Guidelines for Newborn Hearing Service

National EHDI Goals – 10 Goal 3: 10 Objectives

(Data Committee RX underlined)

3.1 Medical services.

a. #/% Infants received PCP, ENT, Eye, Genetics

3.2 Early intervention services.

a. #/% Enrolled

b. #/% Received family support information

c. #/% Eligible infants signed IFSP

d. #/% Lost to follow-up after identification

e. #/% Eligible by degree

3.3 Audiologic services.

a. Doc families received info options.

b. Doc of plan for management ALD

c. Doc of protocols and guidelines for mang. Aural Habilitation

d. #/% HA fitted before 6m

3.4 Family rights when choosing comm. modes and methods a. Doc of procedural safeguards re: parents rightsb. List of resources and contacts various comm. options c. Doc plans for distributing resource list and procedural safeguards

3.5 Resource guidea. #/% Families receive state resource guideb. Resource guides in any language spoken by >5% c. List of questions for parents to ask philosophy/practice of programs

3.6 Membership of IFSP having individual with expertise in HL a. #/% individual with professional preparation Hl on EI team

3.7 Education and training opportunities a. Doc training implemented or planned

3.8 Quality intervention systemsa. List of available services for diverse populations b. Doc services for HL and other disabilities

3.9 RX for EI providers re: families can learn about comm. options, guidelines for monitoring the comm./social, social dev., EI staff with personnel specialists in HI, linking to family-to-family, list of preschool program options within transition plan

a. Doc balanced information within resource guild

b. Doc test scores: comm. & social skill dev. at 6m intervals

c. Doc. updated guidelines

d. #/% Families referred to and involved in parent-to-parent support

3.10 Parent participation in EHDI system.

a. #/% parents in program planning, evaluation, or monitoring.

b. #/% EHDI Advisory Board.

Michigan Guidelineswww.michigan.gov/ehdi

Intervention for:

Educational

Audiological

Family Support

Communication

Medical

Background on Michigan EHDI

No legislation Voluntary testing and reporting

Great MI community (hospitals) HIPAA to help – FERPA??? hinders

EHDI under the Department of Health Back-up system to providers

ensure care build infrastructure

Referral all HL to Part C or Part B (child find >3y)

Background on Michigan Data

Births – ~130,000 Screening 92% (~120,000)

Missed & Incomplete (8%, ~10,000) Referred (2.7%, ~3,600) (total referred 13,600)

Outcomes/Diagnostic reported (17% missed, 65% referred) (~3,900 reported back)

Hearing Loss reported ~200 (Part B 250y)

EI Referral = 100% Documentation back from EI ~55%

Time of DX of HL

Great job improving ID by 3m and decreasing ID over 6 months

Note: slightly skewed due to time for data to come in

% of HL by DX time

0

20

40

60

80

100

Y2000 Y2001 Y2002 Y2003 Y2004

Year

Perce

nt

% DX by 3

% DX by 6

% DX after 6

Return of EI forms

Less reporting Major problem FERPA preventing

MDCH/EHDI from collecting

Opportunity to participate? Get connected with

services? Quality of services?

% EI forms returned

0

10

20

30

40

50

60

70

80

Y2000 Y2001 Y2002 Y2003 Y2004

Year

% EI

retu

rned % EI retuned

% no returned

Returned EI forms: Goal: EI by 6

Get connected by 6m? Get connected after 6m? Get connected at all?

NOT A GOOD TREND

% of HL by EI time

0

20

40

60

80

Y2000 Y2001 Y2002 Y2003 Y2004

Year

Perce

nt

% EI by 6

% EI after 6

% EI unknown

What is returned

(2000-2005) 913 HL ID and 501 returned =57% Of the 501 returned 170 (33%) had no EI srvs data

Refused = 44 Died = 4 Lost = 82 No release = 40

331 cases (36%) known EI service data out of 913

EI services for the 331 returned

Educational Enrolled by 6 m

53% yes Person with HI experience:

21% yes, 3% no (n=10), 51% unknown

Audiological Intervention Monitoring every 3m?

22% yes, <1% no (n=3), 73% unknown Amp. Option Chosen:

34% yes, CI Option Chosen: 5% Amp. by 6m:

35% yes, Amp monitored 3m:

8% yes

Communication Skills Intervention Parent-Infant Program: 56%

Family Support Resource Guide: 42%, Mental Health: 10% CSHCS: 63%, Family-to-Family Support 12%

Medical Intervention Otolaryngology 67% Ophthalmologist 11% Genetics 18%

Meeting the National Goals?Data committee

#/% Infants received PCP, ENT, Eye, Genetics – not all

#/% Enrolled – not all

#/% Lost to follow-up after identification – not all

#/% Eligible by degree - yes

#/% HA fitted before 6m – not allDoc test scores: comm. & social skill dev. at 6m intervals - NO

#/% Families referred to and involved in parent-to-parent support – not all

#/% Received family support information – not all#/% Eligible infants signed IFSP - yesDoc families received info options – not allDoc of plan for management ALD – yes Doc of protocols and guidelines for mang. Aural Hab. - yes Doc of procedural safeguards re: parents rights – yesList of resources and contacts various comm. options - yesDoc plans for distributing resource list and procedural safeguards - yes#/% Families receive state resource guide – not allResource guides in any language spoken by >5% - yesList of questions for parents to ask philosophy/practice of programs - yes#/% individual with professional preparation Hl on EI team – not all

Doc training implemented or planned - yes

List of available services for diverse populations - yes

Doc services for HL and other disabilities - yes

Doc balanced information within resource guild- yes

Doc. updated guidelines - yes

#/% parents in EHDI program planning, evaluation, or monitoring- yes

#/% EHDI Advisory Board - yes

RX for Michigan EI form

Need clear form with simple directions Yes No questions –

Better if Discussed, Referred, Participating Helpful to collect EI provider names Helpful to ID no experience with HI on IFSP Disabilities mean to EI Enrollment verses first contact with family?

Other RX

FERPA, FERPA, FERPA, FERPA, Health Initiative to ID early Education Initiative to EI early

Need National/Federal push for cooperation Need State sharing arguments

Or, need 2 state EHDI programs Dept of Health (screen and ID) Dept of Education (EI)

Questions

Anne M. Jarrett, MA, CCC-A (517) 335-8878 phone (517) 335-8036 fax Jarretta@mi.gov www.michigan.gov/ehdi

CONTACT: Yasmina Bouraoui, MPH, Program Coordinator

517/335-9398 bouraouiy@michigan.gov

Follow-Up Consultant Anne Jarrett, MA, CCC-A 517/335-8878 jarretta@michigan.govCommunity Development Consultant Debby Behringer, RN, MSN 517/335-8875 behringerd@michigan.govAudiology Consultant Lorie Lang, MA, CCC-A 517/335-9125 langlo@michigan.govParent Consultant Amy Lester, BA 517/335-8273 lestera@michigan.govData Maintenance Consultant Erin Estrada, BA 517/335-8916 estradae@michigan.govData Analyst Consultant Paul Kramer, BA 517/335-9720 kramerpa@michigan.govGeneral Office Assistance Ebone Thomas 517/335-8955 thomase@michigan.gov

517/335-8884, TTY 517/335-8246, FAX 517-335-8036

Other Michigan Presentations

Lost to Follow-up: Thurs 3:20 – 4:10 Room C

Reporting Metabolic vs EBC: Fri 2-3 Room C

Community Development: Fri 9-10 Room D