Severe Visual Impairments in Infants and Toddlers in the United States Deborah D

CEU Article Severe Visual Impairments in Infants and Toddlers in the United States Deborah D. Hatton, Sarah E. Ivy, and Charles Boyer

Structured abstract: Introduction: This article describes the most prevalent visual conditions and other demographic characteristics of 5,931 young children with severe visual impairments in 28 states in the United States, the largest sample reported to date. The information presented in this article can assist in planning and implementing programs. Method: The data were collected at the time of entry into specialized early intervention programs for young children with visual impairments through reviews of records, interviews, and direct observations. They were sent to Babies Count: The National Registry for Children with Visual Impairments, Birth to 3 Years at the American Printing House for the Blind. The data were collected and entered between January 2005 and April 2011. Results: Cortical visual impairment, retinopathy of prematurity (ROP), and optic nerve hypoplasia were the three most prevalent diagnoses. Approximately 60% were identiﬁed as being legally blind, and 65% had disabilities in addition to visual impairments. The mean age of the children at the time of diagnosis was 4.9 (SD ϭ 5.7) months, referral to specialized programs was at 10.5 (SD ϭ 7.8) months, and entry into specialized programs was at 11.6 (SD ϭ 8.0) months. There was an average lag of 5.6 months between the diagnosis and referral. Discussion: Cortical visual impairment, ROP, and optic nerve hypoplasia continue to be the leading causes of severe, uncorrectable visual impairments in children in the United States. ROP appears to be decreasing in prevalence; however, more children with ROP appear to have additional disabilities. The lag of 5.6 months between diagnosis and referral, a longer lag than was previously reported, is of concern. Implications for practitioners: Information about the characteristics of children with severe uncorrectable visual conditions is valuable for communicating with families, planning and implementing early intervention and educational programs, and collaborating with medical professionals.

Considerable progress has been made in optimal development and learning. Chil- preventing blindness in developed coun- dren with light perception or less visual tries during the past century. However, a ability are at a particular risk for devel- small percentage of young children con- opmental delay and adverse outcomes tinue to be diagnosed with uncorrectable (Hatton, Bailey, Burchinal, & Ferrell, visual impairments that may impede their 1997). Consequently, these children need

©2013 AFB, All Rights Reserved Journal of Visual Impairment & Blindness, September-October 2013 325 CEU Article immediate referral to early intervention geneous group of students—some may be and early childhood special education totally blind and gifted, while others may programs, so they can receive support have additional disabilities and relatively from teachers with specialized expertise useful (20/70 to 20/200) vision. Regard- in the education of students who are less of their characteristics, families and blind. Indeed, Goal 1 of the National educators agree that support during early Agenda for the Education of Children childhood makes it more likely that chil- and Youths with Visual Impairments, dren with visual impairments will suc- Including Those with Multiple Disabil- ceed in their early formal education with ities (Huebner, Wolffe, Merk-Adam, & sighted children and be “ready to learn” Styker, 2004) afﬁrms the need for early when they enter kindergarten. referral to intervention and education Information about young children with to facilitate optimal development and severe visual impairments may allow vi- learning. sion care specialists to make earlier refer- Private agencies in the United States rals. Information about the most prevalent have been providing specialized support visual conditions in these children has the for children with severe, uncorrectable vi- potential to enhance clinical services and sual impairments since the emergence of promote research to prevent or ameliorate retrolental ﬁbroplasia in the mid-20th severe, uncorrectable visual conditions. century. Passage of the Education for All In addition, data can inform family sup- Handicapped Children Act amendments port, early intervention and education, of 1986, P.L. 99-457, extended support to and the design of developmentally appro- priate products to promote optimal out- children with disabilities from birth to age comes (Hatton, Schwietz, Boyer, & 3, and federal funds were used to promote Rychwalski, 2007). early referral to improve developmental In 1995, a number of agencies that pro- and educational outcomes. Most infants vided specialized services to young chil- and toddlers with severe visual impair- dren with visual impairments in the ments in the United States have had ac- United States, along with researchers and cess to early intervention services since medical professionals who were inter- the late 1980s. Since the mid-1970s, most ested in child development and education school-aged children with severe, uncor- of children with severe visual impair- rectable visual impairments have been ed- ments, collaborated to establish a prospec- ucated in their local schools with sighted tive registry of these children (Hatton, peers with support from specialized 2001). The overarching goal of the registry teachers of students with visual impair- was to improve services for young children ments. These teachers serve a hetero- with severe, uncorrectable visual impairments and their families. In 2000, the American Printing House for the Blind EARN CEUS ONLINE by answering questions on this article. (APH) assumed leadership through Babies For more information, Count (Hatton et al., 2007). visit: Ͻhttp://jvib.org/CEUsϾ. Representatives from these specialized agencies, researchers, and medical

326 Journal of Visual Impairment & Blindness, September-October 2013 ©2013 AFB, All Rights Reserved CEU Article professionals that were affiliated with the Table 1 Demographic characteristics of the children group agreed that data would be collected in the Babies Count Registry, 2005–11 .(5,931 ؍ at the time that children were enrolled in (n specialized early intervention programs. Characteristic Number Percentage The article presented here includes information on 5,931 young children with se- Gender Male 3,264 55 vere visual impairments in the United Female 2,602 44 States, aged 3 and younger. Earlier data Unknown 65 1 were reported on different cross-sectional Ethnicity samples of 406 (Hatton, 2001) and 2,155 European American 3,361 57 Hispanic 1,315 22 (Hatton et al., 2007) children who were African American 452 8 referred for early intervention because of Other minority 730 12 severe visual impairments using the same Unknown 73 1 instrument and data collection procedures. Mother’s education Less than high school 790 13 The following questions provided the High school graduate 1,404 24 foundation for this article: Some college 1,599 26 Bachelor’s degree 993 17 • What are the most prevalent visual con- Graduate school 564 10 Unknown 581 10 ditions in young children with severe, Family uncorrectable visual conditions? Intact, two parents 4,650 78 • What characteristics are commonly as- Other 1,236 21 sociated with the most prevalent visual Unknown 45 1 conditions? Note: Percentages are rounded to the nearest • What are the average ages at which whole number. young children with severe, uncorrectable visual conditions are diagnosed have a visual acuity of 20/70 or worse in and referred for specialized services? the better eye after correction, a re- • How do the current findings compare to stricted visual field of 20 degrees or the data reported in 2007, and what less, or a functional vision loss that differences are relevant for educators impedes learning. and medical professionals? The primary caregivers of the 5,931 young children were interviewed about Method their children’s visual abilities and di- PARTICIPANTS agnoses. The states that reported data From January 2005 through April 2011, for more than 500 children included data were collected on young children Utah, California, Colorado, Arizona, with visual impairments who were liv- and Massachusetts. An additional six ing in 28 states. These children, aged 39 states provided data for between 100 months or younger, were referred for and 500 children. Ten states provided specialized services for children with data for 10 to 99 children. See Table 1 visual impairments. To be eligible for for the demographic characteristics of services in most states, children must the sample.

PROCEDURE Findings The survey form that was used for the PREVALENCE OF VISUAL CONDITIONS previous data collection was used for the The three most prevalent visual condi- present study (Hatton, 2001; Hatton et al., tions of the 5,931 young children who 2007). Professionals who were employed were referred to specialized agencies pro- by the specialized early childhood providing services for visual impairments grams that participated in the study in- were cortical visual impairment (CVI; vited the parents or caregivers of new 24.9%, n ϭ 1,480), retinopathy of prema- referrals to participate in the Babies turity (ROP; 11.8%, n ϭ 700), and optic Count Registry. The registry and data col- nerve hypoplasia (ONH; 11.4%, n ϭ lection form were designed for children 674). Children with structural disorders, aged 3 and younger. After the agencies such as anophthalmia, microphthalmia, obtained written consent to collect and and coloboma, made up 7.9% (n ϭ 468) share deidentified data with APH, data for of the sample; retinal disorders, such as the survey form were collected through Leber’s congenital amaurosis and rod- interviews at the time of entry, reviews of cone dystrophies, represented 5.5% (n ϭ records, and direct observations. The pro- 327); and albinism accounted for 4.5% fessionals who obtained consent and col- (n ϭ 264) of the sample. Compared to lected data were chosen and trained to Hatton et al.’s (2007) findings for a sim- administer the survey because of their ilar, but smaller, sample, the percentage expertise with young children with visual of children with ROP decreased from ␹2 ϭ Ͻ impairments. 16.2% to 11.8% ( 1 27.01; p .001), A unique identifying code was used on the percentage with structural disorders ␹2 ϭ the data collection forms instead of names. increased from 5.4% to 8.6% ( 1 Completed forms were mailed to APH, 14.27; p Ͻ .001), and the percentage with where information was recorded electroni- ONH increased slightly from 9.7% to ␹2 ϭ ϭ cally. Some agencies entered deidentified 11.4% ( 1 4.77; p .029). The prev- ␹2 ϭ electronic data directly via an online secure alence of CVI did not change ( 1 1.52; server. These data were then transferred to p ϭ .218). the first author and converted to a STATA (StataCorp, 2009, Release 11-IC, College PREVALENCE OF ADDITIONAL Station, Texas) data set. The Institutional DISABILITIES Review Board at Vanderbilt University ap- Data on the presence of additional dis- proved the analysis of the deidentified ex- abilities were available for approximately tant data. The first two authors screened the 98.9% (5,865) of the sample. Among data before analyzing it and ran descriptive these participants, 34.7% (n ϭ 2,033) statistics. Chi-square analyses and t-tests were identified as having a single disabil- were used to compare the results from the ity of visual impairment, while 28.3% current study to selected findings from Hat- (n ϭ 1,660) were identified as having ton et al. (2007). As we noted earlier, data developmental delays, and 37.0% (n ϭ from 2007 were different from the current 2,172) were identified as having disabili- data set. ties other than developmental delays,

Visual impairment Visual Visual and impairment impairment developmental and additional only delay disabilities

Condition n % n % n %

Cortical visual impairment, n ϭ 1,480 216 15 429 29 835 56 Hatton et al. (2007),nϭ 509 63 12 75 15 371 73 Retinopathy of prematurity, n ϭ 697 231 33 215 31 251 36 Hatton et al. (2007), n ϭ 349 153 44 127 36 69 20 Optic nerve hypoplasia, n ϭ 616 307 50 162 26 147 24 Hatton et al. (2007), n ϭ 208 109 52 43 21 56 27 Structural,a n ϭ 467 237 51 87 19 143 31 Hatton et al. (2007), n ϭ 117 51 44 7 6 59 50 Retinal disorders,b n ϭ 327 177 54 70 21 80 24 Hatton et al. (2007), n ϭ 118 34 29 12 10 72 61 Albinism, n ϭ 264 227 86 26 10 11 4 Hatton et al. (2007), n ϭ 107 93879855 Other,c n ϭ 1,501 495 33 501 33 505 34 Hatton et al. (2007) 130 24 107 20 298 56 Unknown, n ϭ 513 143 28 170 33 200 39 a Structural ϭ anophthalmia, microphthalmia, coloboma, and the like. b Retinal disorders ϭ Leber’s congenital amaurosis, rod cone dystrophy, and so forth. c Other ϭ known visual conditions not included in the table.

␹2 ϭ such as cerebral palsy or deafness or hear- 231) in the current sample ( 1 11.45; ing impairment. The percentage of chil- p Ͻ .001), although the percentage of dren (34.7%) with only visual impairment children with retinal disorders and only ␹2 ϭ ϭ was similar to the 32.2% ( 1 4.25; p visual impairment increased signifi- .039) identified in Hatton et al. (2007). cantly from 28.8% (n ϭ 34) to 54.1% ϭ ␹2 ϭ Ͻ Table 2 presents information on addi- (n 177; 1 22.29; p .001). tional disabilities for specific visual con- Changes in the prevalence of additional dis- ditions. Among the children with the abilities in other visual conditions were not three most prevalent visual conditions, significant. 50% of those with ONH (n ϭ 307) had only visual impairment compared to 33% FUNCTIONAL VISION ϭ ␹2 ϭ (n 231) of those with ROP ( 1 37.69; Legal blindness status was known for ap- p Ͻ .001). Children with ROP were sig- proximately 29.3% (n ϭ 1,739) of the nificantly more likely to have a single total sample, with 60.2% (n ϭ 1,047) disability than children with CVI (15%; identified as legally blind. This latter ϭ ␹2 ϭ Ͻ n 216; 1 99.90; p .001). The percentage was similar to the 62.6% of percentage of children with ROP who had 1,378 children whose functional vision a single disability of visual impairment status was known in 2007 who were decreased significantly from 43.8% (n ϭ identified as legally blind (n ϭ 862). 153) in Hatton et al. (2007) to 33.1% (n ϭ Table 3 presents information about

Awareness of Following

Condition Lights Objects Lights Objects

Cortical visual impairment (n ϭ 654) 93% (n ϭ 611) 80% (n ϭ 521) 57% (n ϭ 375) 52% (n ϭ 338) Retinopathy of prematurity (n ϭ 371) 92% (n ϭ 340) 82% (n ϭ 305) 70% (n ϭ 261) 67% (n ϭ 250) Optic nerve hypoplasia (n ϭ 285) 83% (n ϭ 236) 62% (n ϭ 178) 52% (n ϭ 147) 45% (n ϭ 128) Structurala (n ϭ 229) 90% (n ϭ 205) 76% (n ϭ 174) 67% (n ϭ 153) 64% (n ϭ 146) Retinal disordersb (n ϭ 164) 91% (n ϭ 150) 82% (n ϭ 135) 71% (n ϭ 117) 63% (n ϭ 104) Albinism (n ϭ 148) 100% (n ϭ 148) 96% (n ϭ 142) 93% (n ϭ 137) 89% (n ϭ 132) Otherc (n ϭ 731) 97% (n ϭ 712) 90% (n ϭ 661) 80% (n ϭ 586) 75% (n ϭ 548) a Structural ϭ anophthalmia, microphthalmia, coloboma, and the like. b Retinal disorders ϭ Leber’s congenital amaurosis, rod cone dystrophy, and so forth. c Other ϭ known visual conditions not included in the table. Note: Data on children whose visual conditions were unknown were not included in this table. visual awareness and object perception sis, referral, and entry for specific visual by visual condition. conditions. The three most prevalent visual condi- AGES OF CHILDREN AT THEIR DIAGNOSIS, tions tended to be diagnosed at slightly REFERRAL, AND ENTRY INTO SPECIALIZED earlier ages than was reported in Hatton PROGRAMS (2007). Specifically, CVI was diagnosed The ages of the 5,931 children in the at a mean age of 6.8 months (SD ϭ 6.1) study ranged from birth to 38.6 months. compared to 7.6 months (SD ϭ 6.0) in Data on the age of diagnosis, referral, and 2007 (t ϭ2.43; p ϭ .015; 95% CI .15 Ϫ entry into specialized programs were re- 1.45). ROP was diagnosed at a mean age ported for 93.4% (n ϭ 5,537) of the sam- of 2.8 months (SD ϭ 4.3) compared to 3.4 ple. The mean age at which the children months (SD ϭ 3.3) in 2007 (t ϭ2.28; p ϭ received a visual diagnosis was 4.9 .023; 95% CI .08 Ϫ 1.12). ONH was months (SD ϭ 5.7). On average, referrals diagnosed at a mean age of 4.2 months for specialized services for young chil- (SD ϭ 4.5) compared to 5.0 months dren with visual impairments were made (SD ϭ 4.8) in 2007 (t ϭ2.05; p ϭ .041; at 10.5 months (SD ϭ 7.8). Entry into 95% CI .03 Ϫ 1.57). specialized programs occurred approxi- In the current sample, the children with mately one month later, at 11.6 months ROP were diagnosed earlier, at a mean (SD ϭ 8.0). The age at the time of diag- age of 2.8 months (SD ϭ 4.3), than were nosis was significantly younger (t ϭ 3.95; the children with ONH, who were diag- p Ͻ .001; 95% CI .30–.90) than the age at nosed at an average age of 4.2 months the time of diagnosis for infants reported (SD ϭ 4.5; t ϭ 5.79; p Ͻ .001; 95% CI by Hatton et al. in 2007. However, the age .93 – 1.87), and the children with CVI, at the time of referral (t ϭ 2.62; p Ͻ .01; who were diagnosed at a mean age of 6.8 95% CI .13–.87) and entry (t ϭ 2.57; p ϭ months (SD ϭ 6.1; t ϭ17.3; p Ͻ .001; .01; 95% CI .12–.88) into programs was 95% CI 3.55 – 4.45). However, the chil- later. See Table 4 for the ages of diagno- dren with ROP were referred at 10.1

330 Journal of Visual Impairment & Blindness, September-October 2013 ©2013 AFB, All Rights Reserved CEU Article Table 4 Mean age in months (standard deviations in parentheses) of critical events by visual condition .(5,537 ؍ n)

Diagnosis Referral to a Entry into a of visual specialized specialized Condition impairment program program

Cortical visual impairment, n ϭ 1416, 26% 6.8 (6.1) 11.1 (7.6) 12.2 (7.8) Hatton et al. (2007) 7.6 (6.0) 11.5 (7.6) 12.6 (7.8) Retinopathy of prematurity, n ϭ 674, 12% 2.8 (4.3) 10.1 (6.9) 11.3 (7.0) Hatton et al. (2007) 3.4 (3.3) 9.6 (6.7) 10.9 (6.9) Optic nerve hypoplasia, n ϭ 654, 12% 4.2 (4.5) 8.2 (6.6) 9.4 (7.0) Hatton et al. (2007) 5.0 (4.8) 8.4 (7.0) 9.8 (7.2) Structural,a n ϭ 459, 8% 2.2 (4.4) 6.9 (7.3) 8.1 (7.6) Hatton et al. (2007) 1.5 (2.9) 6.1 (6.7) 7.0 (6.8) Retinal disorders,b n ϭ 321, 6% 4.8 (5.1) 10.7 (8.0) 11.6 (7.9) Hatton et al. (2007) 5.5 (4.9) 9.5 (6.7) 10.6 (6.8) Albinism, n ϭ 256, 5% 3.3 (4.3) 9.4 (7.9) 10.5 (8.1) Hatton et al. (2007) 4.0 (2.8) 8.0 (6.4) 9.0 (6.8) Other,c n ϭ 1,399, 25% 5.3 (6.0) 12.1 (8.4) 13.1 (8.4) Hatton et al. (2007) 6.1 (6.1) 10.5 (7.8) 11.6 (7.8) Unknown, n ϭ 358, 6% 5.2 (6.3) 11.4 (8.3) 12.3 (8.3) a Structural ϭ anophthalmia, microphthalmia, coloboma, and so forth. b Retinal disorders ϭ Leber’s congenital amaurosis, rod cone dystrophy, retinoblastoma, and the like. c Other ϭ known visual conditions not included in the table. months (SD ϭ 6.9), later than the children 37.6% (n ϭ 1,214) were referred by med- with ONH, who were referred at 8.2 ical professionals. months (SD ϭ 6.6; t ϭ 5.13; p Ͻ .001; 95% CI 1.17 – 2.63). The children with Discussion ROP also entered programs later, at a On the basis of reviews of both the medical mean age of 11.3 months (SD ϭ 7.0), and social sciences literature, we have pre- than did the children with ONH, who sented data on the largest sample of young entered at 9.4 months (SD ϭ 7.0; t ϭ4.95; children with severe, uncorrectable visual p Ͻ .001; 95% CI 1.15 – 2.65). The impairments reported to date. Information children with CVI were older than the about these children is of value to both children with ROP at the time of referral, educators and medical professionals for ser- with an average age of 11.1 months vice delivery and the prevention of these (SD ϭ 7.6 months; t ϭ3.00; p Ͻ .01; 95% disorders. It also highlights the need for CI .35 – 1.65) and entry, with an average collaboration among teachers of children age of 12.2 months (SD ϭ 7.8; t ϭ2.65; with visual impairments, early intervention- p Ͻ .01; 95% CI .23 – 1.57). Of the 3,228 ists, and medical professionals (and their children for whom referral source data support staff members). were available, 44.8% (n ϭ 1,445) were referred by generic early intervention pro- MOST PREVALENT VISUAL CONDITIONS viders (that is, those without specialized CVI, ROP, and ONH continue to be the expertise in visual disabilities), while most prevalent diagnoses in children with

©2013 AFB, All Rights Reserved Journal of Visual Impairment & Blindness, September-October 2013 331 CEU Article severe, uncorrectable visual impairments, months or younger, young maternal age consistent with earlier reports (Hatton, (mothers aged 22 and younger) and pri- 2001; Hatton et al., 1997; Hatton et al., maparity (first pregnancy) were associ- 2007; Kong, Fry, Al-Samarraie, Gilbert, ated with ONH, as were low maternal & Steinkuller, 2012; Steinkuller et al., weight gain, weight loss during preg- 1999). The percentage of children with nancy, preterm labor, and gestational vag- CVI appears to have remained relatively inal bleeding (Garcia-Filion et al., 2008). stable since 2001 (varying only from Weight loss during pregnancy and mater- 21.2% to 23.6% to 24.9%) (Hatton, 2001; nal age may be amenable to intervention Hatton et al., 2007). Although the per- and deserve further study to elucidate centage with ROP decreased from 17.0% their association with ONH. in 2001 to 16.2% in 2007 to 11.8% currently, the percentage of children with MULTIPLE DISABILITY RISK STATUS ONH increased from 7.6% in 2001 to The percentage of children we studied 9.7% in 2007 to 11.4% currently (Hatton, with developmental delays and additional 2001; Hatton et al., 2007). disabilities, 65.3%, appears to have re- Although ROP is responsible for about mained stable (67.8% in 2007; Hatton, 13% of childhood blindness in the United unpublished data) from 2007 (Hatton et States and appears to be decreasing, it is al., 2007) to the present. However, the increasingly being diagnosed in develop- percentage of children with ROP and ad- ing countries (Gilbert et al., 2005; Kong ditional diagnoses increased significantly et al., 2012). Continuing advances in (p Ͻ .001). Children with ROP typically medical technology have resulted in im- are among the sickest, youngest, and proved outcomes for extremely premature smallest infants to survive prematurity. infants. These advances do not mean, The data for ROP may reflect the in- however, that ROP will be eradicated in creased availability of life-sustaining the United States, particularly in rural ar- medical interventions; more children with eas that may lack access to the latest ROP may survive, but they may be more medical technology. Laser therapy is cur- likely to have additional disabilities. Co- rently the primary treatment for ROP, and occurring disabilities appear to be in- a number of clinical trials are under way to creasing in children with ROP at the same target genetic and molecular mediators that time that the percentage of children with may be more viable options for treatment in ROP is decreasing. This finding seems rural areas (Mataftsi, Dimitrakos, & consistent with the medical literature that Adams, 2011; Rivera et al., 2011). has suggested that gestationally young In our sample, the prevalence of ONH premature infants with severe visual im- appears to have increased slightly, con- pairments may have poorer outcomes. sistent with other reports (Garcia-Filion (Mataftsi, Dimitrakos, & Adams, 2011; et al., 2008). Greater awareness of ONH Rivera et al., 2011). may have accounted for both the earlier The percentage of children with ONH diagnosis of ONH and earlier recognition and multiple disabilities remained rela- of additional disabilities. In a study of 204 tively stable, from 38.7% in 2001 (Hat- children with ONH who were aged 36 ton, 2001) to 47.6% in 2007 (Hatton et al.,

332 Journal of Visual Impairment & Blindness, September-October 2013 ©2013 AFB, All Rights Reserved CEU Article 2007) to 50.2% currently (p ϭ .213). This Kutzbach, Summers, Holleschau, King, finding is not consistent with that of and MacDonald (2007) reported that 3 Garcia-Filion et al. (2008), who reported (4%) had a diagnosis of pervasive devel- that 78% of a sample of 73 children with opmental disorder (PDD) and 17 (22%) bilateral ONH who were studied prospec- had a diagnosis of attention deficit hyper- tively at age 36 months and again at 5 activity disorder (ADHD). Again, though, years had developmental delays at age 5. the mean age of the 78 children in that The discrepancy may be due to the sample was 9.14 years, much older than younger age of the children in the current the current sample. Because children in study; the signs of developmental delays the current sample were so young, symp- may have been too subtle to detect during toms of ADHD and PDD may not yet infancy and toddlerhood. Garcia-Filion, have been evident. Knowing that children Fink, Geffner, and Borchert’s (2010) pro- with albinism may develop PDD and spective research documented that only ADHD at later ages may be helpful for 10% of their sample had no neuroradio- educators and families because these dis- graphic or endocrine abnormalities. Only orders, rather than low vision, may con- 4 of the 6 children among the 10% did not tribute to problems in school. have developmental delays. Hypothyroid- Early intervention, education, and med- ism was strongly associated with devel- ical services for children with a single opmental delays, as was hypoplasia of the disability of visual impairment are often corpus callosum. Other endocrinopathies quite different from those for children associated with ONH and developmental with multiple disabilities, who tend to delays were growth hormone deficiency, have poorer outcomes. Increases in mul- adrenocorticotropic hormone deficiency, tiple disabilities in children with severe and diabetes insipidus (Borchert, 2012; visual impairments can affect the alloca- Garcia-Filion et al., 2008). These findings tion of resources, professional develop- document the need for referrals to endo- ment needs, and university programs that crine workups for all children with ONH; prepare medical and allied health profes- perhaps medications and supplements can sionals and teachers. Therefore, the in- ameliorate the developmental delays as- crease in multiple disability risk status in sociated with ONH. Brodsky, Conte, Tay- infants and toddlers with ROP is of con- lor, Hoyt, and Mrak (1997) reported five cern and should be the topic of further cases of sudden death in young children research. Perhaps some of the new treat- with ONH and endocrine abnormalities, ments directed at genetic and molecular making the issue of referral for hormonal targets will prove useful in reducing the abnormalities even more critical. impact of extreme prematurity (Gilbert et Similarly, the percentage of children al., 2005). with albinism and developmental delays or other disabilities remained stable over FUNCTIONAL VISION time, with only 14% of the current sample In the United States, children who are being described as having a developmen- identified as being legally blind are enti- tal delay or co-occurring disability. In a tled to resources that promote early de- sample of 78 children with albinism, velopment through APH; therefore, the

©2013 AFB, All Rights Reserved Journal of Visual Impairment & Blindness, September-October 2013 333 CEU Article documentation of legal blindness is Fink, Geffner, & Borchert, 2010) on particularly important, even for children ONH may have contributed to increased at young ages. However, for at least 40% awareness. of the samples reported since 2001 (Hat- Overall, children were diagnosed on ton, 2001; Hatton et al., 2007), legal average two weeks earlier than in 2007 blindness status was reported as un- (4.9 months rather than 5.5 months); known. If possible, it would be helpful for however, they were referred to early in- medical professionals to consider using tervention and entered early intervention preferential visual acuity assessments with programs two weeks later than in 2007 these young children to assess whether they (Hatton et al., 2007). Parents of very are legally blind; perhaps support staff young children with severe, uncorrectable members can learn to perform these prefer- visual impairments may be depressed and ential looking assessments. immobilized by the prospect of having a child with a severe disability (Hatton, AGES OF CRITICAL EVENTS McWilliam, & Winton, 2002, 2003). Visual conditions were diagnosed on av- Many have never had experiences with erage at 4.9 months, consistent with data successful adults who are blind and do not reported in Hatton (2001), but earlier than realize that their children can attend the average age of 5.5 months reported by neighborhood schools with their sighted Hatton et al. in 2007. The ﬁndings suggest peers. Medical professionals may con- that there may not be much margin for sider asking parents for permission to re- lowering the age of diagnosis of the most fer their young patients to early interven- severe visual impairments in young chil- tion directly to reduce this lag. Perhaps dren. The increased attention to early in- medical support staff members can estab- tervention for children with disabilities lish relationships with early intervention and the easily recognized symptoms of agencies and serve as liaisons to families severe conditions may account for the who may be too overwhelmed to contact earlier diagnoses. Of course, children early intervention agencies directly. with ROP would be identiﬁed before they Specialized agencies that provide ser- are discharged from the hospital follow- vices for infants and toddlers with visual ing birth, as would some children with impairments should establish collabora- structural defects. The age for a CVI di- tive relationships with local ophthalmol- agnosis was about a month earlier than in ogists, optometrists, and pediatricians to previous reports, suggesting that ophthal- facilitate earlier referrals. Early interven- mologists are more attuned to this disor- tionists and parents constantly observe der. It is interesting that the age at which children’s use of vision and other senses; ONH has been diagnosed has been therefore, they can provide medical pro- steadily decreasing from 8.6 months in fessionals with detailed information about 2001 (Hatton, 2001) to 5.0 months in young children’s use of vision. Children 2007 (Hatton et al., 2007) to 4.2 months are often frightened in clinical settings, currently. Research by Borchert (2012) and medical professionals have limited and his colleagues (Garcia-Filion et al., time to establish rapport and complete 2008; Garcia-Filion et al., 2010; Ma, examinations. Because most children

334 Journal of Visual Impairment & Blindness, September-October 2013 ©2013 AFB, All Rights Reserved CEU Article with severe visual impairments in the years to collect and report data on infants United States are educated in local and toddlers with severe, uncorrectable schools with sighted children, early inter- visual impairments. vention to promote optimal development and learning is critical. Earlier referral to References specialized services for infants and tod- Borchert, M. (2012). Reappraisal of the optic dlers with visual impairments and ongo- nerve hypoplasia syndrome. Journal of ing collaboration among ophthalmolo- Neuro-ophthalmology, 32, 58–67. gists, families, and members of early Brodsky, M. C., Conte, F. A., Taylor, D., intervention teams (including educators, Hoyt, C. S., & Mrak, R. E. (1997). Sudden death in septo-optic dysplasia: Report of 5 therapists, and social workers) can help cases. Archives of Ophthalmology,115, these children achieve their potential and 66–70. help families cope. Garcia-Filion, P., Epport, K., Nelson, M., Azen, M. S., Geffner, M., Fink, C., & LIMITATIONS Borchert, M. (2008). Neuroradiographic, Even though data on severe, uncorrect- endocrinologic, and ophthalmic correlates of adverse developmental outcomes in children able visual impairments are rare (Gilbert with optic nerve hypoplasia: A prospective et al., 2005; Kong et al., 2012) and the study. Pediatrics, 121, e653–e659. Retrieved sample reported in this article is the larg- from http://pediatrics.aappublications.org/ est reported to date, we must acknowl- content/121/3/e653.long edge a number of limitations. First, data Garcia-Filion, P., Fink, C., Geffner, M., & for some children were incomplete. Al- Borchert, M. (2010). Optic nerve hypoplasia in North America: A re-appraisal of though the data collectors used a consis- perinatal risk factors. Acta Ophthalmo- tent protocol and were trained to collect logica, 88, 527–534. data at their agencies, more controlled Gilbert, C., Fielder, A., Gordillo, L., Quinn, procedures for collecting and verifying G., Semiglia, R., Visintin, P., & Zin, A. data would have been ideal. The agencies (2005). Characteristics of infants with severe did not collect data on the number of retinopathy of prematurity in countries with low, moderate, and high levels of develop- families who declined to participate, and ment: Implications for screening programs. so there is no way to determine the re- Pediatrics, 115, e518–e525. Retrieved from sponse rate or if children whose families http://pediatrics.aappublications.org/content/ declined to participate differed from those 115/5/e518.long for whom data were available. A prospec- Hatton, D. D. (2001). Model registry of early tive multisite study of infants and toddlers childhood visual impairment: First-year results. Journal of Visual Impairment & with visual impairments with more rigor- Blindness, 95, 418–433. ous data-collection procedures could pro- Hatton, D. D., Bailey, D. B., Burchinal, vide more deﬁnitive information about M. R., & Ferrell, K. A. (1997). Develop- these children. Realistically, though, the mental growth curves of preschool children resources to conduct such a study are not with vision impairments. Child Develop- ment, 68, readily available. It is remarkable that 788–806. Hatton, D. D., McWilliam, R. A., & Winton, agencies that are scattered across the P. J. (2002). Infants and toddlers with vi- United States, often with limited re- sual impairments: Suggestions for early sources, have collaborated for the past 17 interventionists. Arlington, VA: ERIC

©2013 AFB, All Rights Reserved Journal of Visual Impairment & Blindness, September-October 2013 335 CEU Article Clearinghouse on Disabilities and Gifted Ma, N. S., Fink, C., Geffner, M. E., & Education. Retrieved from http://www. Borchert, M. (2010). Evolving central hy- ericdigests.org/2003-5/infants.htm pothyroidism in children with optic nerve Hatton, D. D., McWilliam, R. A., & Winton, hypoplasia. Journal of Pediatric Endocri- P. J. (2003). Family-centered practices for nology and Metabolism, 23, 53–58. infants and toddlers with visual impair- Mataftsi, A., Dimitrakos, S. A., & Adams, ments. Chapel Hill, NC: FPG Child Devel- G. G. (2011). Mediators involved in reti- opment Institute. nopathy of prematurity and emerging ther- Hatton, D. D., Schwietz, E., Boyer, B., & apeutic targets. Early Human Develop- Rychwalski, P. (2007). Babies Count: The ment, 87, 683–690. National Registry for Children with Visual Rivera, J. C., Sapieha, P., Joyal, J. S., Du- Impairments, Birth to 3 Years. Journal of hamel, F., Shao, Z., Sitaras, N., et al. the American Association of Pediatric (2011). Understanding retinopathy of pre- Ophthalmology and Strabismus, 11, 351– maturity: Update on pathogenesis. Neona- 355. tology, 100, 343–353. Huebner, K. M., Wolffe, K. E., Merk-Adam, Steinkuller, P. G., Du, L., Gilbert, C., Foster, B., & Styker, D. (2004). The national A., Collins, M. L., & Coats, D. K. (1999). agenda for the education of children and Childhood blindness. Journal of the Amer- youths with visual impairments, including ican Association of Pediatric Ophthalmol- those with multiple disabilities—Revised. ogy and Strabismus, 3, 26–32. New York: AFB Press. Kong, L., Fry, M., Al-Samarraie, M., Gilbert, C., & Steinkuller, P. G. (2012). An update on progress and the changing epidemiol- Deborah D. Hatton, Ph.D., associate professor, ogy of causes of childhood blindness Department of Special Education, Peabody Col- lege, Vanderbilt University, Peabody Box 228, worldwide. Journal of the American Asso- One Magnolia Circle, Nashville, TN, 37203; ciation of Pediatric Ophthalmology and e-mail: Ͻ[email protected]Ͼ. Sarah Strabismus, 16, 501–507. E. Ivy, M.S., doctoral candidate, Department of Kutzbach, B., Summers, C. G., Holleschau, Special Education, Peabody College, Vanderbilt A. M., King, R. A., & MacDonald, J. T. University; e-mail: ϽSarah.E.Ivey@vanderbilt. Ͼ (2007). The prevalence of attention-deﬁcit/ edu . Charles Boyer, M.A., early childhood pro- ject leader, American Printing House for the hyperactivity disorder among persons with Blind, 1839 Frankfort Avenue, Louisville, KY albinism. Journal of Child Neurology, 22, 40206; e-mail: Ͻ[email protected]Ͼ. Address all 1342–1347. correspondence to Dr. Hatton.

336 Journal of Visual Impairment & Blindness, September-October 2013 ©2013 AFB, All Rights Reserved Physical Education and Sports for People with Visual Impairments and Deafblindness: Foundations of Instruction

By Lauren J. Lieberman, Paul E. Ponchillia, and Susan V. Ponchillia

Physical activity provides benefits for children’s health and fitness, and it also helps to improve their self-esteem, feelings of competence, and relationship skills. It is part of the expanded core curriculum that includes skills essential for students who are visually impaired. Participation in physical education has generally been more limited for individuals with visual impairments than for others with typical sight. To help close that gap, three prominent educators and athletes have created this important new sourcebook on teaching the skills that will enable children and adults with visual impairments and deafblindness to participate in physical education, recreation, sports, and lifelong health and fitness activities. Physical Education and Sports provides you with this essential information: » Methods of modifying physical skills instruction » Techniques for adapting sports and other physical activities » Teaching methods and curriculum points for physical skills instruction throughout the lifespan » Information about sports and related activities, providing rules, adaptations, and information about competition options

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