Children labeled medically complex enrolled in Early Intervention. Susan Wiley, MD Jareen Meinzen-Derr, PhD Dan Choo, MD

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Cornelia Ferguson
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1 Children labeled medically complex enrolled in Early Intervention Susan Wiley, MD Jareen Meinzen-Derr, PhD Dan Choo, MD

2 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)

3 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

4 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

5 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

6 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 (Utah State University)

7 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 To understand language growth in the population of children enrolled in early intervention services for Deaf/hoh described as medically complex

8 Methods Children with permanent HL Enrolled in RIHP EI program 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

9 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

10 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

11 Decreasing ages over time 8 5 Medically Complex Not Medically Complex Age in Months Age of Identification Age of Enrollment

12 Type and Level of HL Medically Complex (n=77) Not Medically Complex (N=38) Percent of Children SNHL COND MIXED AN MILD MOD Sev-Prof UNI

13 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 ( )* 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

14 Communication Modality Medically Complex Not Medically Complex Percent of Children Oral ASL/Bilingual Total Comm Other

15 Medically Complex by enrollment age Age in Months Enrollment <6 months (N=63) Enrollment >6 months (N=4) Age of ID Age of Enrollment

16 Medically Complex by enrollment age Enrolled <6 months Enrolled >6 months Percent of Children SNHL COND MIXED AN MILD MOD Sev-Prof UNI

17 Bilateral Baseline Language by Enrollment Age 0 LDS Language Quotients p=0. p= <=3 mos 3-6 mos >=6 mos Age At EI Enrollment

18 Adjusted mean baseline quotients LDS Language Quotients Enrollment <6 months Enrollment >6 months mild/mod sev/prof uni Receptive 00 Enrollment <6 months LDS Language Quotients Enrollment >6 months Expressive 30 0 mild/mod sev/prof uni

19 Expressive Language Gains Expressive Language Units < 6 months age at enrollment > 6 months age at enrollment Mild/Moderate Hearing Loss Duration in Early Intervention

20 Expressive Language Quotient Expressive Language < 6 months age at enrollment > 6 months age at enrollment Relative to Age Mild/Moderate Hearing Loss Duration in Early Intervention

21 Expressive Language Gains Unilateral Hearing Loss Expressive Language Units < 6 months age at enrollment > 6 months age at enrollment Duration in Early Intervention

22 Expressive Language Quotient Expressive Language Relative to Age Unilateral Hearing Loss Duration in Early Intervention < 6 months age at enrollment > 6 months age at enrollment

23 Expressive Language Gains Severe to Profound Hearing loss Expressive Language Units Duration in Early Intervention < 6 months age at enrollment > 6 months age at enrollment

24 Expressive Language Quotient Expressive Language < 6 months age at enrollment > 6 months age at enrollment Relative to Age Severe to Profound Hearing Loss Duration in Early Intervention

25 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

26 Limitations No definition of medically complex Language quotients rather than standard scores No developmental/cognitive proxy measure in either group

27 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

28 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

29 Thank you Ohio Department of Health

31 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 ( ) 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%)

General Information. * Are you a hospital or an LHD. Hospital LHD

General Information. * Are you a hospital or an LHD. Hospital LHD General Information * Are you a hospital or an LHD Hospital LHD Hospital Information * Hospital Name Year(s) of Current CHNA Year(s) of current Improvement Strategies/Plan What counties are represented/served