Children labeled medically complex enrolled in Early Intervention Susan Wiley, MD Jareen Meinzen-Derr, PhD Dan Choo, MD
Background Approximately 40% of children with hearing loss have additional developmental concerns This high rate may be due to an increasing ability to support children born extremely prematurely and reliance on life-saving supports for medically complex children These children are increasingly served by early intervention (EI)
State System Regionalized tracking of children not passing UNHS is paired with the Early Intervention System (Regional Infant Hearing Programs) This system also collects child data about hearing loss and other issues
Annually in Ohio: Approximately 50,000 births per year Approximately 6000 non-pass UNHS Approximately 450 expected to be born with some degree of hearing loss
PAULDING (9) VAN WERT (4) MERCER () WILLIAMS (8) DEFIANCE (0) DARKE (6) PREBLE (0) AUGLAIZE (4) FULTON (3) PUTNAM (9) 3 ALLEN 5 (60) SHELBY 3 (30) MIAMI 5 (50) 5 MONTGOMERY 7 (30) HENRY (5) Regional Infant Hearing CLARK 7 (75) GREENE 6 (69) 9 LUCAS 3 (56) HANCOCK 3 (37) HARDIN (5) LOGAN (5) WOOD 5 (55) CHAMPAIGN (0) WYANDOT () OTTAWA (7) SANDUSKY 3 (34) SENECA 3 (9) UNION (5) MADISON (0) MARION 3 (3) CRAWFORD (3) DELAWARE 7 (76) 8 FRANKLIN 6 (688) MORROW (7) ERIE 3 (37) HURON 3 (36) RICHLAND 6 (64) FAIRFIELD 6 (67) KNOX 3 (9) LICKING 7 (80) ASHLAND 3 (8) LORAIN 3 (48) MEDINA 7 (8) HOLMES 3 (35) PERRY (9) 3 WAYNE 6 (65) 3 CUYAHOGA 65 (77) COSHOCTON (9) MUSKINGUM 4 (44) Programs LAKE 9 (05) 5 SUMMIT 5 (80) GEAUGA 4 (45) 4 STARK 7 (86) TUSCARAWAS 4 (48) GUERNSEY (0) NOBLE (5) PORTAGE 6 (67) ASHTABULA 5 (5) TRUMBULL 9 (03) CARROLL (4) HARRISON (7) BELMONT 3 (8) MONROE (6) 3 MAHONING 0 () COLUMBIANA 5 (5) JEFFERSON 3 (9) Coordinates tracking and follow-along for newborns identified through Ohio s newborn hearing screening program Assures that all families enrolled in the program receive Part C core services MORGAN (7) 4 BUTLER 7 (90) 8 HAMILTON 43 (474) WARREN 9 (0) CLERMONT 0 (09) FAYETTE (5) CLINTON (3) HIGHLAND (4) BROWN (3) ADAMS (5) PICKAWAY (4) ROSS 3 (36) PIKE (5) SCIOTO 4 (40) HOCKING (5) VINTON (7) JACKSON (7) GALLIA (6) LAWRENCE 3 (30) ATHENS (6) MEIGS () WASHINGTON (8) # = # of hospitals (incl. birthing, children s hospitals, freestanding birthing centers) County Name # = Projected # Served 40% (not lost to follow-up) of 3/000 born with hearing loss x 3 (to include all children birth to three served in a given year) (#) = Projected # UNHS Referrals 4% of average # of births per county in a year Provide Early Intervention specific to hearing loss Provides services at no cost to the families Based on 000, 00, 00 births per county Have strong community linkages
SKI*HI Curriculum The Parent Advisors are SKI*HI trained SKI*HI : specialized curriculum offering nonbiased information on communication choices, ongoing home and family centered support for infants and children with deafness or hearing loss http://www.skihi.org/ (Utah State University)
Objectives To compare medically complex children who are Deaf/hard of hearing (HOH) to children without medical complexities enrolled in EI in one state between years 003-006 To understand language growth in the population of children enrolled in early intervention services for Deaf/hoh described as medically complex
Methods Children with permanent HL Enrolled in RIHP EI program 003-06 SKI*HI Language Development Scale At least every 6 months Provides units for specific ages Language quotient (LQ) was created by dividing the actual score (unit completed) with the unit that signifies the appropriate language skills for the child s current age
Medically Complex Determined by Regional Infant Hearing Program Parent mentors Typically children with medical diagnoses such as seizures tracheostomy G-tube children with some syndromes likely represented in this group as well
Methods Children with complex medical condition (n=77) were compared to children without medical complexities (n=38*) regarding HL characteristics Analysis of language among MC children Changes in language units (representing gains in language skills) Language quotients over time (representing language levels relative to age of child) Baseline language levels by early EI enrollment (<6 mos of age) late EI enrollment (>6 months) Change of language over st mos of EI *Am Ann Deaf, Winter 0
Decreasing ages over time 8 5 Medically Complex Not Medically Complex Age in Months 9 6 3 0 003 004 005 006 003 004 005 006 Age of Identification Age of Enrollment
Type and Level of HL 90 80 Medically Complex (n=77) Not Medically Complex (N=38) Percent of Children 70 60 50 40 30 0 0 0 SNHL COND MIXED AN MILD MOD Sev-Prof UNI
Medically Complex N=77 Not Complex n=38 Median age months at ID 5.5 (.7-.4)* 3.4 (.7-9.) Median age at EI enrollment 8.6 (4.8-5.6)* 6.5 (3.-5.5) % enrolled by 6 months 36%* 49% Received amplification 77% 76% Median age at amplification 9.5 (6.3-8.)* 7 (4.-6.) % of children with severe to profound SNHL receiving CI 8%* 5% Median with interquartile range reported *p<0.0 difference between groups
Communication Modality 70 60 Medically Complex Not Medically Complex Percent of Children 50 40 30 0 0 0 Oral ASL/Bilingual Total Comm Other
Medically Complex by enrollment age Age in Months 4 3 0 9 8 7 6 5 4 3 0 Enrollment <6 months (N=63) Enrollment >6 months (N=4) Age of ID Age of Enrollment
Medically Complex by enrollment age 90 80 Enrolled <6 months Enrolled >6 months Percent of Children 70 60 50 40 30 0 0 0 SNHL COND MIXED AN MILD MOD Sev-Prof UNI
Bilateral Baseline Language by Enrollment Age 0 LDS Language Quotients 00 90 80 70 60 50 p=0. p=0.003 40 <=3 mos 3-6 mos >=6 mos Age At EI Enrollment
Adjusted mean baseline quotients LDS Language Quotients 0 0 00 Enrollment <6 months Enrollment >6 months 90 80 70 60 50 40 30 0 mild/mod sev/prof uni Receptive 00 Enrollment <6 months LDS Language Quotients 90 80 70 60 50 40 Enrollment >6 months Expressive 30 0 mild/mod sev/prof uni
Expressive Language Gains Expressive Language Units 5 4 3 0 9 8 7 6 5 4 3 0 < 6 months age at enrollment > 6 months age at enrollment Mild/Moderate Hearing Loss 0 3 4 5 6 7 8 9 0 Duration in Early Intervention
Expressive Language Quotient 0 0 00 90 80 70 60 50 40 30 0 0 0 Expressive Language < 6 months age at enrollment > 6 months age at enrollment Relative to Age Mild/Moderate Hearing Loss 0 3 4 5 6 7 8 9 0 Duration in Early Intervention
Expressive Language Gains Unilateral Hearing Loss Expressive Language Units 3 0 9 8 7 6 5 4 3 0 < 6 months age at enrollment > 6 months age at enrollment 0 3 4 5 6 7 8 9 0 Duration in Early Intervention
Expressive Language Quotient 0 0 00 90 80 70 60 50 40 30 0 0 0 Expressive Language Relative to Age Unilateral Hearing Loss 0 3 4 5 6 7 8 9 0 Duration in Early Intervention < 6 months age at enrollment > 6 months age at enrollment
Expressive Language Gains Severe to Profound Hearing loss Expressive Language Units 3 0 9 8 7 6 5 4 3 0 0 3 4 5 6 7 8 9 0 Duration in Early Intervention < 6 months age at enrollment > 6 months age at enrollment
Expressive Language Quotient 0 0 00 90 80 70 60 50 40 30 0 0 0 Expressive Language 0 3 4 5 6 7 8 9 0 < 6 months age at enrollment > 6 months age at enrollment Relative to Age Severe to Profound Hearing Loss Duration in Early Intervention
Language Outcomes Among MC For all degrees of HL, MC entering EI early had significantly higher mean baseline LQ (>0 points, p<0.0) than late entry children Children enrolled early with severe/profound HL made significant language gains (β=0.7, p<.000) in the st year, with LQ remaining steady Similar gains were seen among those enrolled late (β=0.8, p<.000), with potential for increase in LQ (β=0.76, p=0.) Children with mild/moderate HL had similar gains (β=0.33, p<.000), with increasing LQs among late entry group (β=0.86, p=0.0), indicating possible catch up to early entry peers
Limitations No definition of medically complex Language quotients rather than standard scores No developmental/cognitive proxy measure in either group
Summary of Findings Both groups received amplification at equal rates, however the medically complex were fit with amplification at older ages Despite similar rates of severe-profound SNHL, children who are medically complex were less likely to receive cochlear implants (8% vs 5%) Children with medical complexities compared to those with no medical complexities were less likely to meet the -3-6 goals regarding identification and enrollment
Summary of Findings MC children who entered EI <6 months of age had significantly higher baseline language than children who entered >6 months of age Age at EI enrollment seemed to be the most important factor for language in this population of children
Thank you Ohio Department of Health
Among those labeled MC Enrolled Enrolled < 6 mos > 6 mos n=63 N=4 Median age of ID in mos.4 (0-5.5) 8.6 (0-3.3) Median age of Enrollment 3.8 (0.8-5.9) 3.4 (6-34.5) Type of HL Severity of HL SNHL Conductive Mixed AN 40 (63.3%) (9%) (7.5%) 0 86 (75.4%) 8 (7%) 6 (4%) 4 (3.5%) Mild 5 (7.9%) 3 (.4%) Moderate 7 (4.9%) 50 (43.9%) Severe-Profound 5 (39.7%) 35 (30.7%) Unilateral 6 (9.5%) 6 (4%)