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Abstract

PURPOSE:

The purpose of this exploratory study was to investigate the types of academic and health-related accommodations provided to adolescents and emerging adults with spina bifida aged 9-20 years.

METHODS:

Data were extracted from the paper and electronic records of transition-age youth enrolled in the study. Four open ended items involved content analysis.

RESULTS:

The most frequently identified accommodation was enrollment in special education classes in 47.7% of the charts. Other academic accommodations that were most often reported were adaptive physical education (n = 71, 39.9%), tutoring (n = 28; 15.7%), and home schooling (n = 21; 11.8%). Clean intermittent catheterization was the most frequently identified health-related accommodation provided by the school nurse/aide (n = 57; 32%).The largest percentage of requests for additional accommodations were made during the middle school grades (15; 54.8%) followed by high school (10; 32.2%).

CONCLUSION:

Findings demonstrated that persistent issues were identified by parents/adolescents regarding the provision of school-related accommodations. This is a relevant area for clinical practice to ensure students with special health care needs and those with spina bifida receive the academic and health-related accommodations in their Individualized Education Program/504 plans.

Keywords

Transition accommodations adolescents emerging adults spina bifida

1 Introduction

There is prevailing agreement that existing services and supports for adolescents and emerging adults (AEA) with special health care needs (SHCN) are inadequate to prepare and facilitate their transitions into adulthood and access to adult service systems, including those for health care. Each year, 1 million AEA with SHCN enter adulthood, among them AEA with spina bifida (SB), which is due in large measure to the advances in comprehensive healthcare management [1 –6]. Reports of survival rates of AEA and adults with SB survival rates indicate improvements. The 20-year survival rate of individuals with SB, which is highly dependent on condition severity, is reported between 60% and 85% [7 –10]. Survival rates based upon level of involvement for adults with SB 40 years and older have been reported. In one study, the survival rate of adults with SB with a mean age of 40 was 39%, which ranged from 17% to 61% depending on the level of the spinal cord defect [11]. In another study, the survival rate was 33% for individuals with SB with a mean age of 46 years [12]. Currently, thousands of AEA with SB transition to adulthood in the United States each year, and adults with SB now outnumber children with the condition [13 –17]. Studies that have investigated lifestyle outcomes for adults with SB reveal lower rates of employment and enrollment in post-secondary education as well as lower quality of life [18 –21]. Adults with SB have higher rates of emergency department visits, hospitalizations, and medical complications as compared to the general population [22 –30]. Depression has been reported in numerous studies of youth and adults with SB [20 , 32]. Several investigations have reported rates of depression were higher among those with SB as compared to peers [33 –36], and a few studies have noted that youth and older adults were at high risk for depression [37, 38]. Findings of these studies suggest that these adults are ill-prepared to achieve the developmental milestones of adulthood compared to their typical peers [39 –41].

For many AEA with SHCN, including those with SB, the approaching challenges of adulthood are daunting, especially when developmental milestones throughout childhood and adolescence have been difficult to reach. AEA with SB most often grow up with ongoing, unrelenting, time-intensive, condition-related management demands that cannot be ignored; these include bowel and bladder management and the use and maintenance of assistive equipment such as orthotics, walkers, or wheelchairs for mobility limitations. This group of AEA, as others, lives with the uncertainty of their diagnostic progression and ultimately their prognosis, despite their best efforts to self-manage their condition-related needs, secondary conditions, accelerated physical deterioration associated with their condition, and complications, some of which are potentially fatal (e.g., shunt malfunctioning, pressure sores, renal failure, etc.). The constant pressures of condition self-management are pervasive and affect all aspects of the SB lived experience without regard to daily circumstances.

Given unprecedented numbers of AEA with SHCN reaching adulthood each year, health care transition (HCT) has become an expanding field of practice and research [42, 43]. The period of adolescence is a pivotal period of lifespan development. It is during this time that pronounced biological, cognitive, and psychosocial changes occur that are the necessary achievement precursors for attaining the benchmarks of adulthood. The life skills achieved during this period contribute to the adolescent’s ability to assume more personal responsibilities, becoming more independent and self-determined [44 –47].

Comprehensive HCT services include not only the transfer to adult health care but service provisions to facilitate acquisition of the developmental tasks of adulthood. Comprehensive HCT care models are crucial to promoting optimal HCT outcomes; such models address individualized needs that include “self-management knowledge and skills necessary to manage their daily treatment needs as independently as possible and become a literate health consumer,” [43, p.161] and include referrals to health, educational, employment, and social services agencies [43]. Acquisition of SB self-management skills and health literacy competencies are needed to function independently in a variety of settings and situations AEA encounter on a daily basis, including educational settings [44 , 48–50]. For students with SB, the secondary school setting serves as the laboratory for learning adjustments and adaptations of condition-related self-management. The school is the dominant setting wherein the students’ SHCN management is addressed and challenged. It is in this environment that AEA with SHCN learn to perform procedural and surveillance tasks beyond the comfortable confines of home and without parental oversight and assistance, to advocate for themselves, to disclose appropriately condition-related information to a growing community network, and to understand their rights and protections [51 –53]. To address this prevailing need of students with SHCN, federal legislation now known as the Individuals with Disabilities Education Act (IDEA) was enacted over 40 years ago to ensure that eligible students with SHCN receive the necessary services and supports, including academic and health-related accommodations as specified in their Individualized Education Program (IEP), to fully participate in school; failure to do so is considered a civil rights violation [50 –56].

Students with SB, especially those with hydrocephalus, are at risk for learning disabilities and deficits with executive functioning, including problems with organization, memory, planning and decision-making [57 –60]. During adolescence, neurocognitive deficits can become more evident as more challenging high school course work requires higher levels of cognitive functioning [38]. Students with SB thus require academic supports such as special education classes and tutoring to assist with learning. Academic accommodations helpful for students with SB include alternative testing and homework assignments and class placement that enables them to better view classroom demonstrations and use digital displays and assistive technology [51 –56].

Students with SB encounter daily challenges in school that force them to adjust or adapt their condition-related self-management [61, 62]; examples include lack of adequate space to perform clean intermittent catheterization (CIC), overbearing school aides who inhibit their independence, and tardiness in arriving for class due to mobility limitations and/or continence issues [62 –64]. Rather than receiving assistance to make up work and catch up with classmates, they may be penalized for excessive absences due to clinic appointments, emergency department visits, and hospitalizations, resulting in school failures and grade retention [61 –66]. Students with SB require condition-specific health-related accommodations such as access to the school nurse’s office for CIC, mobility assistance on campus, classroom exemptions for late arrivals, earlier departure due to mobility limitations, and arrangements for make-up work and/or home schooling due to absences for medically-related reasons.

Studies have demonstrated that students with SB have fewer positive experiences in school and interactions with classmates [38, 57]. Their classmates may avoid interactions with them and respond with hostility as evidenced by bullying [67, 68]. Multiple studies examining the social relationships of adolescents with SB report ongoing difficulties with peer relationships and social isolation [66 –72]. These needs of students with SB are largely unmet despite legal and regulatory requirements for schools to provide academic and health-related accommodations [52–56 , 67].

Furthermore, educational personnel are often unfamiliar with, uncomfortable with and lacking knowledge about the lived experiences of students with SB and their needs for ongoing SHCN management and school-based health-related accommodations [73 –75]. This lack of knowledge and understanding may contribute to a lack of appropriate responses from school personnel to students’ needs for health-related accommodations [61, 76] and ultimately lead to poorer academic outcomes [77 –79].

The IEP is the legally protected written document as enacted in IDEA that enables students with SHCN to receive the necessary services and supports, including academic and health-related accommodations, to fully participate in school activities [18–20 , 80]. Nevertheless, the needs of students with SB for academic and health-related accommodations are largely unmet despite legal and regulatory requirements for schools to provide them [52–56 , 62–66]. When students and parents engage meaningfully in the IEP process and advocate strongly for these accommodations, they are more often provided. However, the literature and the authors’ own research and clinical efforts indicate that AEA with SB and their parents are frequently not fully engaged in the IEP process due to a lack of full understanding of the rights and protections provided by IDEA. Consequently, they do not have access to the educational and support services needed that will best prepare them for the transition to adulthood [52–56 , 73–76].

Given the importance and scope of the condition-related and academic needs of transition-age students with SB, this investigation was undertaken to gain insights and understanding of this lived experience, as scant literature exists to inform comprehensive long-term management. Although issues associated with the provision of academic and health-related accommodations have been raised in the literature, there is a notable lack of evidence of the types of accommodations that are actually provided in school settings, specifically for students with SB. Further, there is a lack of knowledge pertaining to requests made by parents and/or students with SB for school-related accommodations not originally provided and the outcomes of their requests. This study provides preliminary exploration of this unique school experience for students with SB not previously reported. The identification of health management needs in the school setting and provision of academic and health-related accommodations can be pivotal to facilitating health stability and academic progress and preventing untoward health consequences for students with SB that can adversely affect their developmental outcomes [59 –65]. The purpose of this exploratory study was to investigate the following: a) the type of academic and health-related accommodations by grade level provided to AEA with SB, aged 9-20, enrolled in the Children’s Hospital Los Angeles Spina Bifida Movin’ On Up HCT program; and b) requests made by parents and/or students with SB for school-related accommodations not originally provided and the outcomes of their requests.

2 Methods

This study was approved by the Children’s Hospital Los Angeles IRB.

2.1 Procedure

This exploratory study consisted of data extraction of the paper and electronic records of transition-age youth who were provided services through the Movin’ On Up HCT program in the Children’s Hospital Los Angeles Spina Bifida Program. Data extracted covered the period from January 1, 2011, to April 6, 2016. All data extracted from charts were inputted into the Health-Related Accommodations Data Extraction Tool (HRADET) described below. During Phase 1, all data were extracted independently by a pair of data extractors. Once Phase 1 was completed, the reliability process was undertaken for all data extracted from the transition records during Phase 2. The two extraction tool forms were examined for comparable responses, and instances of conflicts were inputted onto reliability checks tally sheets. The summary of identified conflicts between the two data extractors provided the basis for final resolution of conflicts. During Phase 3, conflicts were resolved between data extractors with documentation supporting the resolved item(s). Four of the items were open ended, which involved content analysis. The responses were coded independently by two experienced coders of the research team, described in detail in the data analysis section.

2.2 Instrumentation

HRADET. This tool consisted of 30 questionnaire items. The demographic section contained 5 closed ended questions pertaining to gender, race, ethnicity, primary diagnoses, and ambulatory status. Section 2 of the HRADET consisted of 7 questionnaire items wherein IEP accommodations identified in the youth’s HCT records were noted according to category and type of accommodations by grade level. Categories of academic and health-related accommodations were a) one-to-one aide; b) school nurse assistance (e.g., supervising CIC); c) academic accommodations (e.g., second set of books at home); d) attendance flexibility (e.g., leaving class early for medical reasons); e) mobility access (e.g., elevator use); f) other (e.g., physical therapy); and g) summary grid of total number of accommodations identified by school type (i.e., elementary, middle and high school). Four questionnaire items, of which three were open ended, related to parental/youth’s requests for accommodations if not originally provided in the IEP, the school personnel’s response(s), and the extent to which the school’s response was perceived as satisfactory by the parent/youth. Three supplemental questions were added to extract data on date of initiation in the Movin’ On Up HCT program; whether the student had an IEP, 504 Plan, or both or if it was not noted; and type of record keeping for this program, as initially records were not recorded electronically.

The HRADET was developed based upon a previous HCT programmatic activity called Creating Healthy Futures that addressed comprehensive HCT needs of youth and young adults with SHCN and disabilities [81 –84]. The development of the HRADET was also influenced by the California Healthy and Ready to Work Transition Assessment Tool, a 72-item questionnaire that assesses the self-care skills and knowledge of transition-age youth and young adults pertaining to their health care management [85 –87].

2.3 Data analysis

Data were analyzed using SAS version 9.4. Frequencies were generated for all variables to characterize the descriptive statistics. Bivariate analyses testing associations between hydrocephalus status and other categorical variables were conducted using Chi-square tests and, in cases of small cell sizes, Fisher’s exact tests. Differences in the median number of accommodations documented for patients with and without hydrocephalus were also assessed; because variables for the number of accommodations at elementary, middle, and high school were not normally distributed, these analyses were conducted using the Wilcoxon rank sum test.

Qualitative analysis of four additional items of the HRADET (of which three were open-ended questions) was conducted. These four questionnaire items were designed to gather data on the accommodations requests made by parents/adolescents. Data analysis involved several stages. After data were extracted from the four items, two researchers (CB and SH) independently read through all responses. Following this, the investigators categorized the responses according to thematic similarities as evidenced by respondents’ replies. After individual coding of responses, the researchers met to compare and contrast coding categorization and conferred on areas of agreement and disagreement. Discussion proceeded until consensus was achieved. In some instances, refinement of categories was undertaken to account for adjustments in coding of data to ensure clarity of categorization of responses.

2.4 Sample

A total of 216 charts of youth who received services through the Movin’ On Up HCT program were available for review. Of that number, 38 were excluded for the following reasons: a) reliability process incomplete/insufficient data available for review [16]; b) not enrolled in secondary level of education [9]; c) expired [4]; d) home schooled/severe level of involvement [6]; e) and charts not available [3]. A total of 178 charts were available for this investigation.

3 Results

The demographic profile of the AEA whose charts were accessed for this investigation is presented in Table 1. Of the charts reviewed, 99 (55.6%) were extracted from male AEA. The age range of AEA whose charts were reviewed was 9 to 20 years, with nearly 75% aged 9-14 years (n = 132). Over 80% (n = 148) were of Hispanic descent. One hundred and thirty-seven (77%) were reported to have myelomeningocele; 107 (60.1%) were community ambulators (p < .0017).

Table 1
Descriptive characteristics of sample (N = 178)

% (n)

Gender

Female 44.4 (79)

Male 55.6 (99)

Age (years)

9-11 46.1 (82)

12-14 28.1 (50)

15-17 22.5 (40)

18-20 3.4 (6)

Race

Asian/Pacific Islander 3.4 (6)

Black/African American 5.1 (9)

White 3.9 (7)

Other 4.5 (8)

Blank/Unknown 83.2 (148)

Hispanic ethnicity

Non-Hispanic 11.8 (21)

Hispanic 83.2 (148)

Blank/Unknown 5.1 (9)

Diagnosis

Myelomeningocele 77.0 (137)

Meningocele 1.1 (2)

Lipomyelomeningocele 8.4 (15)

Closed neural tube defect 23.0 (41)

Caudal regression syndrome 3.9 (7)

Open neural tube defect 25.3 (45)

Ambulatory status

Non-ambulator 29.2 (52)

Non-functional ambulator 2.8 (5)

Household ambulator 7.9 (14)

Community ambulator 60.1 (107)

	% (n)
Gender
Female	44.4 (79)
Male	55.6 (99)
Age (years)
9-11	46.1 (82)
12-14	28.1 (50)
15-17	22.5 (40)
18-20	3.4 (6)
Race
Asian/Pacific Islander	3.4 (6)
Black/African American	5.1 (9)
White	3.9 (7)
Other	4.5 (8)
Blank/Unknown	83.2 (148)
Hispanic ethnicity
Non-Hispanic	11.8 (21)
Hispanic	83.2 (148)
Blank/Unknown	5.1 (9)
Diagnosis
Myelomeningocele	77.0 (137)
Meningocele	1.1 (2)
Lipomyelomeningocele	8.4 (15)
Closed neural tube defect	23.0 (41)
Caudal regression syndrome	3.9 (7)
Open neural tube defect	25.3 (45)
Ambulatory status
Non-ambulator	29.2 (52)
Non-functional ambulator	2.8 (5)
Household ambulator	7.9 (14)
Community ambulator	60.1 (107)

Twenty-one types of accommodations were documented across six categories (academic accommodations, CIC, therapy, one-to-one aid, attendance flexibility, and mobility access). The average number of accommodations documented per child throughout grades 1 through 12 was low: the median for all accommodation types calculated cumulatively from grades 1 through 12 was 4 (range: 0-23). For a proportion of the students (n = 23, 17.5%), no accommodations in any of the categories studied were documented. As presented in Table 2, one or more accommodations were documented in 137 (82.5%) of the charts. The rank order of accommodation types provided per child in grades 1 to 12 is presented in Table 2. Academic accommodations were most often identified, in 132 (74.2%) of the charts. The most frequently identified accommodation was enrollment in special education classes, which was identified in nearly half of the charts (n = 85; 47.7%). Other academic accommodations that were most often reported in the charts reviewed were adaptive physical education (n = 71, 39.9%); tutoring (n = 28; 15.7%) and home schooling (n = 21; 11.8%). CIC was the most frequently identified health-related accommodation provided by the school nurse/aide (n = 57; 32%). Therapy services received in the school setting were identified in just slightly more than 20% of the charts (n = 36, 20.2%). Aide assistance (i.e., 1-to-1 aide), referring to personal assistance provided during the school day for academic, safety and health-related purposes, was identified in 26 (14.6%). Attendance flexibility (n = 9; 5.1%) and mobility access (n = 8; 4.5%) were rarely identified in the charts. The range of accommodations was highest for academic accommodations (0-10) and smallest for both attendance flexibility (0-2) and mobility access (0-2).

Table 2

Total number of accommodations documented per child throughout grades 1 to 12*

	Range (grades 1-6)	Range (grades 6-8)	Range (grades 9-12)	Range (grades 1-12)	% (n) with≥1 accommodations documented
Total accommodations of all types	0 –12	0 –16	0 –13	0 –23	82.5 (137)
No accommodations	0 –12	0 –16	0 –13	0 –23	17.5 (29)
Academic accommodations	0 –6	0 –7	0 –9	0 –10	74.2 (132)
Homework	0	0–1	0–1	0–1	4.5 (8)
Testing	0	0	0–1	0–1	3.4 (6)
Second set of books at home	0–2	0–1	0	0–2	5.6 (10)
Resource period	0–1	0–2	0–3	0–3	4.5 (8)
Special education classes	0–3	0–3	0–4	0–6	47.7 (85)
Adaptive physical education	0–3	0–3	0–2	0–4	39.9 (71)
Home schooling	0–2	0–3	0–3	0–6	11.8 (21)
Tutoring	0–2	0–3	0–2	0–4	15.7 (28)
Classroom seating (better view)	0	0–1	0–2	0–2	3.4 (6)
Other accommodations in school	0	0–1	0–1	0–1	1.1 (2)
Clean intermittent catheterization (CIC)	0 –3	0 –4	0 –3	0 –6	32.0 (57)
Performs CIC	0–1	0–3	0–3	0–6	26.4 (47)
Supervises CIC	0–1	0–2	0–3	0–3	9.6 (17)
Therapy	0 –6	0 –3	0 –3	0 –6	20.2 (36)
Physical therapy	0–3	0–1	0–1	0–3	14.6 (26)
Occupational therapy	0–3	0–3	0–3	0–5	11.8 (21)
Other therapy	0	0	0–2	0–2	2.2 (4)
One-to-one aid	0–4	0–2	0 –3	0 –7	14.6 (26)
Attendance flexibility	0 –2	0 –2	0 –1	0 –2	5.1 (9)
Leave class early for medical reasons	0–2	0–1	0–1	0–2	2.8 (5)
Arrive to class late for medical reasons	0	0–1	0	0–1	0.6 (1)
Other related to leaving early or arriving late	0	0	0–1	0–1	2.2 (4)
Mobility access	0	0	0 –2	0 –2	4.5 (8)
Can use elevator	0	0–1	0–1	0–1	4.5 (8)
Other related to getting around	0	0	0–1	0–1	0.6 (1)

*For each individual accommodation and each grade period (grades 1-6, grades 6-8, and grades 9-12), the total number of accommodations of that type documented across the grade period for each child was calculated. The ranges reflect the minimum and maximum number of accommodations documented.

Qualitative analysis. Responses to items pertaining to AEA/parental requests for accommodations not originally provided in the IEP were extracted from charts of 28 AEA. The largest percentage of requests for additional accommodations were made during the middle school grades (54.8%; 15) followed by high school (10; 32.2%). Accommodation requests were slightly higher as reported on charts of 15 (53.6%) females. Myelomeningocele was the most frequently identified diagnosis (22/40; 55%) followed by closed neural tube defect (4/40; 10%). Just over half (53.5%) had hydrocephalus. Of the 28 AEA, 23 (82.1%) were Hispanic and 24 (85.7%) had IEPs. A total of 38 accommodations were requested that were not originally provided in the IEPs. The most frequently identified requests were for assistance with CIC (7; 18.4%); additional accommodations because the current accommodations were inadequate (6; 15.8%); and the assignment of a one-to-one aide for mobility and academic purposes (6; 15.8%). Other accommodations requested in descending order can be found in Table 3. The majority of parents/AEA had negative perceptions of the school personnel’s response to their requests (not responsive: 16; 50% or inadequate: 2; 6.2%). A minority (6; 18.8%) indicated that the school’s response was positive.

Table 3

Requests for additional accommodations not originally provided in the child’s IEP, and the schools’ response

Demographic Profile (n = 28)
Grade Level*	Gender	Diagnosis**	Ethnicity	IEP
ES: 3 (9.7%)	Males: 13 (46.4%)	MMC: 22/40 (55%)	Hispanic: 23 (82.1%)	Has IEP: 24 (85.7%)
MS: 15 (54.8%)	Females: 15 (53.6%)	CNTD: 10/40 (25%)	Black/AA: 3 (10.7%)	Not noted: 4 (14.3%)
HS: 10 (32.3%)		LipoMMC: 4/40 (10%)	White: 1 (3.6%)
HS CLSP: 1 (3.2%)		ONTD: 4/40 (10%)	Unknown: 1 (3.6%)
		Hydrocephalus: 15 (53.5%)
Qualitative Analysis
Questions	Responses (n = 38)***
Question 14: Did parent	CIC	7 (18.4%)
and/or AEA request health-related	Inadequate accommodations	6 (15.8%)
accommodation(s) from	One-to-one aid	6 (15.8%)
school personnel that	Enrollment	4 (10.5%)
were not originally	Books	4 (10.5%)
provided in IEP?	Academic accommodations	3 (7.8%)
	Physical accommodations	2 (5.3%)
	Services provided	2 (5.3%)
	PE	2 (5.3%)
	Non-specific	2 (5.3%)
		n=32
Question 15: Description of school	No	16 (50%)
personnel’s response to parent’s/AEA	Yes	6 (18.8%)
request for health-related accommodation(s)	Blank	4 (12.6%)
(include free text description	Pending	2 (6.2%)
found in chart/EMR	Inadequate	2 (6.2%)
	Alternative	2 (6.2%)
		n=38
Question 16: Did AEA/parents feel	No	19 (50%)
school’s response was adequate	Yes	6 (15.8%)
to their request(s)?	Blank	13 (34.2%)
		n=29
Question 17: Response of AEA/parents	Positive	1 (3.4%)
to school’s response to request for health-related	Negative	14 (48.3%)
accommodation(s) (include free text	Blank	14 (48.3%)
description found in chart/EMR).

*Accommodation requests crossed over school levels. **May have more than one primary diagnosis identified. ***More than one accommodation response from parent. Key: AEA: adolescents and emerging adults; CIC: clean intermittent catheterization; CNTD: Closed Neural Tube Defect; EMR: electronic medical record; ES: Elementary School; IEP: Individualized Education Program; MMC: myelomeningocele; MS: Middle School; HS: High School; HS CLSP: High School Community Living Skills Program; ONTD: Open Neural Tube Defect; PE: physical education.

4 Discussion

The findings of this exploratory investigation provide introductory in-depth insights on the provision of academic and health-related accommodations for transition-age students with SB as documented in their charts. This is the first study to explore this phenomenon in students with SB; a previous study explored provision of health-related accommodations in 50 IEPs of students with the diagnostic classification of “Other Health Impaired” (including one student with SB) [77]. In that study, 14 health-related accommodations were identified, whereas in this study with a larger sample of students with more complex medical needs, 21 academic and health-related accommodations were reported.

It is noteworthy that the highest percentages of accommodations reported were those pertaining to academic supports; nearly one half of the charts indicated that the AEA were enrolled in special education classes/programs. This finding is similar to a 1994 report published using 1994 California special education enrollment data, which indicated that 51% of students with SB were enrolled in special education programs [88]. Despite recognition of the risks for learning disabilities and executive functioning deficits that this population of youth experiences, particularly when the academic demands of high school become greater, only about half of the AEA in this study and in the California report [88] were enrolled in special education programs [38 , 58–61]. These findings suggest that enrollment in special education programs is not necessarily a normative educational expectation. Other academic accommodations in this study were reported to a far lesser degree, in some instances in less than 5% of the charts reviewed. Other academic accommodations needed by students who require special education services as noted in this study’s findings have been previously reported. In this investigation, a few of the identified accommodations such as testing, homework, classroom seating and tutoring have been previously described in the literature [51–56 , 89–91]. No examples of technology-related accommodations were reported in this study, although they are reported widely in the educational literature [92, 93].

The next most frequently identified accommodation was for CIC, which was recorded in 32% of the charts; this health-related accommodation has condition-specific relevance for this population of students with SB who have neurogenic bowels and bladders [62, 94]. Leaving class early or arriving to class late for medical reasons (e.g., performing CIC, mobility issues) has not been previously reported as a health-related accommodation. Other mobility-related accommodations identified in this study were access to the school building elevator and the use of a one-to-one aide whose responsibilities in some circumstances involved mobility safety protection on the school campus. Mobility issues in the school setting with this level of specificity have not been previously reported in the US literature. Accommodations for mobility access were recently reported for Trinidadian students in special education using wheelchairs [91]. In that study, just over 20% of charts reviewed noted the provision of special services (e.g., physical therapy, occupational therapy, speech therapy); a similar array of services were provided to 14% (n = 64) of students with traumatic brain injury as reported by their parents [90, 91].

Parental requests for additional accommodations were also explored. Other studies reported mixed findings pertaining to parental perceptions of school services and supports provided to their AEA. Parents of elementary and secondary students with traumatic brain injury suggested high levels (93%) of ease with obtaining needed academic supports; 43% indicated ease with obtaining needed social/behavioral support [90]. Another study of parents of students with chronic diseases (e.g., asthma, food allergies) reported issues with school communication, access to school information, and limited availability to school nurses for services [95]. A qualitative study explored parental experiences with the health care and educational systems as it pertained to the diagnostic and subsequent labelling of their children who were diagnosed with developmental coordination disorder. The Canadian study reported challenges in accessing educational accommodations for children; the authors found access to accommodations was associated with parental social, economic and cultural capital [96].

The study findings reveal that there are scant sources of evidence pertaining to the academic and health-related accommodations provided to students with SHCN and especially for those with SB. The significance of addressing students’ needs for accommodations in their IEPs has been widely acknowledged by international pediatric, nursing and child health organizations as an essential and important component of HCT planning [44 , 97–103]. Nevertheless, issues pertaining to health-related and academic accommodations needed by youth with SHCN, including SB, in the school setting are rarely addressed in the educational and pediatric literature [77, 79]. Reasons for this void in the literature are unclear. Researchers have noted that inclusion of health-related concerns in the transition IEP is essential to the achievement of postsecondary adult outcomes, which is of relevant concern for students with SB and SHCN as they learn to adeptly manage their daily treatment needs in the school setting [77–79 , 104]. To illustrate, IEPs/504 plans of students with chronic kidney disease were significant predictors of health outcomes; those with IEPs/504 plans had significantly fewer emergency department visits and hospitalizations compared to students who did not [104]. Disruptions to ongoing health management needs in the school setting can result in significant and even life-threating situations [79].

The necessity of integrating the disparate service approaches in education and health care systems to effect optimal outcomes for youth with SHCN including those with SB is apparent [63 , 78]. Nevertheless, scant research exists that provides insights and understanding of the relevance of having the needed and appropriate academic and health-related accommodations in the school setting. These accommodations are needed to support the student’s academic performance and to ensure daily condition management requirements such as CIC performance and mobility safety during school hours.

5 Limitations

There are a number of limitations associated with this investigation. The sample of youth with SB reported in this study is not representative of youth with SB typically reported in the literature; this sample consisted of more than 80% Hispanic youth who reside in the highly populated state of California wherein Hispanics are the largest ethnic group. In addition, all were enrolled in public insurance programs. It is possible that these sample characteristics could have biopsychosocial and cultural implications when compared to samples of youth with SB with different profiles. The documentation of academic and health-related accommodations was not consistently recorded as it was not expected to be identified in hospital-based/outpatient-based records. In addition, this documentation was done inconsistently across disciplines as there was no standardization for charting of accommodations and was obtained indirectly by the members of the SB team. This lack of consistency with charting of accommodations is acknowledged as problematic and likely associated with underestimating of the actual numbers of accommodations provided, although the extent to which this is true is unknown. Comprehensive and interdisciplinary care provided in this clinic setting has been and continues to be focused on major health and psychosocial concerns wherein addressing types and satisfaction with school-related accommodations may not be an immediate and/or appropriate priority for the clinic appointment. Additionally, accommodation concerns would not be considered an applicable assessment focus for some interdisciplinary colleagues. As it was typically identified in retrospective chart reviews, data entered may be incomplete, inaccurate, or, as has been mentioned, missing. The extent to which students were cognitively impaired was not directly assessed as psychometric testing was not conducted in the SB clinic. As has been discussed previously, students with SB, and more specifically those with shunts, are at higher risk for learning disabilities and problems with executive functioning including problems with organization, memory, planning, and decision-making [57 –60]. During adolescence, the neurocognitive deficits can become more evident as more challenging high school course work requires higher levels of cognitive functioning [38]. Assessment of the level of cognitive functioning would provide additional insights as to how cognitive impairment and other selected variables such as age, grade level, and the extent to which academic accommodations are provided are associated with secondary and post-secondary school outcomes. Limitations associated with the recall of this school information by AEA and caregivers are to be considered as well. Another limitation associated with data extraction was the shift from paper charting to electronic records, which affected the documentation process as the electronic medical record was more facile and convenient than the use of hard copy documentation. A relevant limitation associated with this investigation is that documentation of academic and health-related accommodations was not directly obtained from the IEPs and 504 plans of the AEA with SB included in this study. Ideally, future studies would have direct access to school records from which to obtain more complete IEP and 504 plan data.

Nevertheless, this exploratory study provided preliminary findings that warrant further investigations that would enlarge understanding of the provision of academic and health-related accommodations. These accommodations can promote health and academic stability and prevent adverse academic and health-related outcomes for students with SB. Future studies should consider exploring this area of inquiry using a variety of research designs and methods such as gathering qualitative data for in-depth analysis from an assortment of stakeholders including parents, teachers, and students with SB. Engaging schools as educational partners would provide contextual perspectives and uniformity with data collection not available in health care settings, such as access to school records of students with IEPs and 504 plans. Future investigations would benefit from obtaining documentation of academic and health-related accommodations directly from IEPs and 504 plans. Engaging school nurses and other interdisciplinary colleagues in school settings such as physical and occupational therapists, nutritionists, and speech and language specialists would offer fresh perspectives on the academic and health-related accommodations needs of students with SB. Importantly, investigation of structural and community-based factors would provide needed insights as to environmental influences affecting access to academic and health-related accommodations. These factors include the type of school (i.e., private or public), the location of schools in low or high resource neighborhoods or rural communities, and school populations of culturally diverse students.

6 Conclusion

Findings demonstrate that persistent issues were identified by parents/adolescents regarding the provision of school-related accommodations. As the study findings reveal, provision of school accommodations is a relevant area for clinical practice to ensure students with SHCN, including those with SB, receive the academic and health-related accommodations in their IEPs/504 plans needed to support their academic performance. Additional research that reflects the integration of services provided in educational and health systems of care is needed to better understand the needs of transition-age students with SB in school settings.

Conflict of interest

None to report.

Funding

None to report.

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Exploratory study of the provision of academic and health-related accommodations to transition-age adolescents and emerging adults with spina bifida

Abstract

PURPOSE:

METHODS:

RESULTS:

CONCLUSION:

Keywords

1 Introduction

2 Methods

2.1 Procedure

2.2 Instrumentation

2.3 Data analysis

2.4 Sample

3 Results

5 Limitations

6 Conclusion

Conflict of interest

Funding

References