Collecting Early Intervention Data 2005 National EHDI Conference

Collecting Early Intervention Data 2005 National EHDI Conference Atlanta, Georgia Anne M. Jarrett, MA- CCCA Follow-up Consultant Michigan Department of Community Health/ Early Hearing Detection and Intervention Program

Guidance to States in collection EI data w National EHDI Goals n Data Committee l Part of a tracking and surveillance system w State Guidelines n 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 6 m

3. 4 Family rights when choosing comm. modes and methods a. Doc of procedural safeguards re: parents rights b. List of resources and contacts various comm. options c. Doc plans for distributing resource list and procedural safeguards 3. 5 Resource guide a. #/% Families receive state resource guide b. 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 systems a. 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 6 m 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 Guidelines www. michigan. gov/ehdi Intervention for: Educational Audiological Family Support Communication Medical

Background on Michigan EHDI w No legislation n Voluntary testing and reporting l l Great MI community (hospitals) HIPAA to help – FERPA? ? ? hinders w EHDI under the Department of Health w Back-up system to providers n n ensure care build infrastructure w Referral all HL to Part C or Part B (child find >3 y)

Background on Michigan Data w Births – ~130, 000 w Screening 92% (~120, 000) n n Missed & Incomplete (8%, ~10, 000) Referred (2. 7%, ~3, 600) (total referred 13, 600) w Outcomes/Diagnostic reported n (17% missed, 65% referred) (~3, 900 reported back) w Hearing Loss reported ~200 (Part B 250 y) w EI Referral = 100% w Documentation back from EI ~55%

Time of DX of HL w Great job improving ID by 3 m and decreasing ID over 6 months w Note: slightly skewed due to time for data to come in

Return of EI forms w Less reporting w Major problem w FERPA preventing MDCH/EHDI from collecting n n n Opportunity to participate? Get connected with services? Quality of services?

Returned EI forms: Goal: EI by 6 w Get connected by 6 m? w Get connected after 6 m? w Get connected at all? NOT A GOOD TREND

What is returned (2000 -2005) w 913 HL ID and 501 returned =57% w Of the 501 returned 170 (33%) had no EI srvs data n n Refused = 44 Died = 4 Lost = 82 No release = 40 w 331 cases (36%) known EI service data out of 913

EI services for the 331 returned w Educational n Enrolled by 6 m w 53% yes n Person with HI experience: w 21% yes, 3% no (n=10), 51% unknown w Audiological Intervention n Monitoring every 3 m? w 22% yes, <1% no (n=3), 73% unknown n Amp. Option Chosen: w 34% yes, CI Option Chosen: 5% n Amp. by 6 m: w 35% yes, n Amp monitored 3 m: w 8% yes

w Communication Skills Intervention l Parent-Infant Program: 56% w Family Support l l Resource Guide: 42%, Mental Health: 10% CSHCS: 63%, Family-to-Family Support 12% w Medical Intervention l l l 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 6 m – not all Doc test scores: comm. & social skill dev. at 6 m intervals - NO #/% Families referred to and involved in parent-to-parent support – not all

#/% Received family support information – not all #/% Eligible infants signed IFSP - yes Doc families received info options – not all Doc of plan for management ALD – yes Doc of protocols and guidelines for mang. Aural Hab. - yes Doc of procedural safeguards re: parents rights – yes List of resources and contacts various comm. options - yes Doc plans for distributing resource list and procedural safeguards - yes #/% Families receive state resource guide – not all Resource guides in any language spoken by >5% - yes List 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 w Need clear form with simple directions n Yes No questions – l n n 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 w FERPA, w Health Initiative to ID early w Education Initiative to EI early n Need National/Federal push for cooperation l n Need State sharing arguments Or, need 2 state EHDI programs l l Dept of Health (screen and ID) Dept of Education (EI)

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

CONTACT: w Yasmina Bouraoui, MPH, Program Coordinator w 517/335 -9398 bouraouiy@michigan. gov Follow-Up Consultant w Anne Jarrett, MA, CCC-A 517/335 -8878 jarretta@michigan. gov Community Development Consultant w Debby Behringer, RN, MSN 517/335 -8875 behringerd@michigan. gov Audiology Consultant w Lorie Lang, MA, CCC-A 517/335 -9125 langlo@michigan. gov Parent Consultant w Amy Lester, BA 517/335 -8273 lestera@michigan. gov Data Maintenance Consultant w Erin Estrada, BA 517/335 -8916 estradae@michigan. gov Data Analyst Consultant w Paul Kramer, BA 517/335 -9720 kramerpa@michigan. gov General Office Assistance w Ebone Thomas 517/335 -8955 thomase@michigan. gov w 517/335 -8884, TTY 517/335 -8246, FAX 517 -335 -8036

Other Michigan Presentations w Lost to Follow-up: Thurs 3: 20 – 4: 10 Room C w Reporting Metabolic vs EBC: Fri 2 -3 Room C w Community Development: Fri 9 -10 Room D