Access to Home- & Community-Based Services for Children with Disability: Academic Institutions’ Role & Areas for Improvement

Abstract

Objective

This project sought to describe provider- and parent-identified needs and barriers to obtaining home- and community-based services (HCBS) for children with disability (CWD) and to determine ways pediatric healthcare institutions can improve access to HCBS services.

Methods

In this exploratory sequential mixed methods evaluation, semi-structed interviews and focus groups were conducted with multidisciplinary providers and staff from an independent children’s hospital, followed by a survey of English and Spanish-speaking parents of CWD. Data from interviews and surveys were then triangulated for overarching common themes regarding how pediatric healthcare institutions can better support access to HCBS.

Results

Among 382 parent respondents, 74.1% reported that their child needed a HCBS, most commonly physical/occupational/speech therapies, school-based support, and case management services. Two-thirds of parents reported at least one barrier to accessing HCBS and one-third experience >3 barriers. While multiple current institutional strengths were noted, internal weaknesses included lack of provider knowledge, staffing difficulties, and lack of protocols for identifying and tracking patients needing or receiving HCBS. External threats included requirements to entry for HCBS and transfer of care, with opportunities for improvement involving dissemination of information, funding support, and connection between providers/support staff and services.

Conclusions

Parents of CWD identified HCBS as necessary for the health of this population, but multiple barriers to HCBS were identified by both parents and providers. Multiple internal and external opportunities for improvement relative to pediatric healthcare institutions were identified, suggesting a need for a comprehensive approach to ensure that CWD receive necessary HCBS.

Introduction

Disability is defined by the World Health Organization’s (WHO) International Classification of Functioning, Disability, and Health (ICF) as impairments in body structure and function, activity limitations, and participation restriction which impact functioning at a number of levels (body, person, and societal).¹ The proportion of children with disability (CWD) has increased from 2% to 8% of the pediatric population (0-18 years old) over the past 50 years.² CWD face unique barriers to care leading to worsening health disparities, including insufficient access to medical equipment, devices, and therapy services but also financial and social hardship worsened by inaccessible housing and communities.^3,4,5,6

The WHO has clearly affirmed that participation in home, community, and educational life is fundamental to the health of all people.^1,7 Home- and community-based services (HCBS) are defined by the Centers for Medicare and Medicaid Services as person-centered care delivered in the home and community to address the needs of people with disabilities.⁸ HCBS span clinical and non-clinical labor (e.g., help with medications or bathing) to adaptive/assistive equipment.⁸ HCBS are, at their core, the health, educational, and social service supports that help children with disabling chronic conditions participate fully in society. Unfortunately, parents of CWD have reported general challenges accessing the HCBS needed to foster that participation.^9,10,11

HCBS inaccessibility has potential ramifications not only on children’s participation in school and family life, but also on parents’ employment and health. Families of CWD are much more likely to require food and housing assistance and be under- or unemployed.^12,13 Moreover, research has demonstrated that families of racial and ethnic minorities are more negatively impacted by lack of HCBS, given that they may already be disadvantaged by lower income or systemic barriers to employment.¹⁴ Conversely, middle-income families may not be income-eligible to access HCBS services. Although certain income requirements can be waived through HCBS waivers, eligibility and access remain difficult.^15,16

While we know HCBS accessibility is a problem, we have an incomplete picture of the specific barriers driving inaccessibility and how the pediatric health system could be improved to enhance HCBS access from the perspectives of both pediatric providers and patients’ families. Additionally, while previous studies have evaluated specific barriers to individual services like therapy or equipment, few have considered child access to HCBS as a whole and its effect on a child and their family.

Given that a sizable portion of CWD healthcare is initiated and received at academic institutions, our project aimed to understand the role pediatric academic institutions play in facilitating access to CWD’s needed HCBS and their challenges obtaining HCBS. By understanding the underlying difficulties families and providers face in obtaining HCBS for CWD, we can use parent and provider recommendations to develop new mechanisms to ensure appropriate, equitable access to HCBS for all patients.

Methods

We conducted an exploratory sequential mixed methods evaluation of experiences with HCBS for CWD from two groups at a Midwest independent children’s hospital.¹⁷ The project was descriptive (non-hypothesis driven). First, we conducted interviews and focus groups with providers and staff members to assess their understanding of and experiences with HCBS for CWD (10/2020-12/2020). Those results informed electronic surveys sent to family caregivers of CWD to identify specific barriers they faced accessing HCBS; understand the relationship between disability type, insurance, parental health literacy, and HCBS provisions; and establish what role, if any, the pediatric institution plays in creating and overcoming identified barriers (6/2021-8/2021). As our aim was to focus on the need for HCBS and related challenges associated with academic institutions, we started with provider/staff interviews to obtain relevant institutional perspective, including understanding what resources the institution offered, before creating and distributing family caregiver surveys to ascertain whether they could access existing resources. This project was determined by our Institutional Review Board to be exempt from human subjects protections as hospital-improvement work (IRB #2020-3984).

Provider and Staff Focus Groups and Interviews

To identify key informants caring for CWD, institutional leadership generated a list of clinical divisions, specialized clinics, and hospital programs that commonly participated in the care or support of CWD and their patient-families. Paired interview guides assessed how providers, staff, and administrators experienced helping families of CWD access HCBS and their perceived impact on CWD’s health (Appendices A and B). The guides were based on the literature regarding CWD healthcare and reviewed by individuals with disability expertise, including members of the institution’s family advisory council.^18-30 The guide was iteratively modified as needed during interviews to refine topic flow and content. Participants had to be providing active care to CWD or supervising programs that served CWD. Depending on their program composition, eligible participants were approached for either individual interviews or focus groups, which were conducted in person and audio-recorded.

Provider and Staff Data Analysis

All interviews were transcribed, anonymized, and coded with qualitative software (Dedoose, V7.5.9, © 2020) using applied thematic analysis, a rigorous inductive approach used to represent participants’ experiences by identifying themes from textual data.³¹ Directed analysis was used to organize thematic concepts within the a priori strengths, weaknesses, opportunities, and threats (SWOT) framework.³² SWOT analysis identifies positive and negative factors within organizations, communities, and broader society that promote or inhibit successful implementation of social services and social change efforts.³³ Strengths and weaknesses focus on internal factors within an organization, including human resources, physical and financial resources, activities and processes, and past experiences.⁹ Opportunities and threats evaluate external factors, especially those stemming from community or societal forces, which include future trends, economic factors, demographics, physical environment, and legislation.⁹ Using this template, codes were extracted from transcripts with subsequent development of overarching themes and subthemes. Initial thematic analyses were conducted to inform development of the family caregiver surveys. Later, themes were re-discussed among investigators following collection of the patient and family data to triangulate the overarching thematic findings regarding HCBS, ensure agreement, and reconcile any remaining ambiguous answers.

Family Caregiver Surveys

To determine parents of CWD at our institution, we applied the Children with Disabilities Algorithm (CWDA), a validated method to categorize children using International Classification of Diseases (ICD) codes.³⁴ The CWDA identified CWD cared for at the institution within the prior 12-month period (N= 23,772, 10.7% of >200,000 unique patients cared for at the institution over that time).

The survey recruitment process can be seen in Figure 1. A stratified sample was created to represent the group, using age, gender, race/ethnicity, preferred language (English or Spanish), disability type (physical, sensory, developmental/behavioral, psychological, intellectual), disability number (1, 2, > 3), and level of medical complexity (non-complex chronic health condition or complex-chronic health condition). Similar studies have shown lower response rates in Non-Hispanic Black and Spanish-speaking patients; therefore, we oversampled these populations for accurate representation in the final dataset. This stratified sample identified 1,692 English and Spanish-speaking family caregivers of CWD who were sent an electronic survey by email and text message (Qualtrics, Provo, UT) between 06/2021-08/2021. Consenting participants received a $15 gift card. Given the CWDA has a known sensitivity and specificity <100% for identifying CWD, the survey screened family participants with an additional question to confirm that their child had a health condition that impacted their function. If so, families were asked the full set of novel survey questions about HCBS access, barriers, and impact developed by the project team (including parents) and questions adapted from the National Survey of Children’s Health (Appendix C).³⁵ Surveys were translated to Spanish by a professional translator and were checked by a bilingual research coordinator.

Figure 1:

Family Caregiver Recruitment and Response Rate

Family Data Analysis

Patient-family survey responses were analyzed by parent/child characteristics including sex, age group (1-4 years, 5-9 years, 10-14 years and 15-plus years), race and ethnicity, preferred language and insurance coverage which were collected from the survey instrument as well as the Electronic Medical Record. Comparisons were tested between survey responses and characteristics with univariate and chi-squared statistics to determine if there were significant differences in responses by characteristic. Stepwise coding was conducted to categorize the free text survey questions, blinded to caregiver and patient demographics. Two investigators met to discuss general themes identified in text responses and performed open coding to classify the free text responses. After answer categories/themes were reconciled, a codebook was developed, applied to a select portion (N=30) of the free text answers, and reviewed to clarify definitions and compare categorization reliability. Any ambiguous answers were reconciled. Inter-rater reliability was confirmed with a kappa statistic of ≥ 0.8. Family survey responses were discussed among the investigator team and integrated into findings from the provider-staff data collection.

Final Mixed-Method Synthesis

Following analysis of the family survey, two project team members (LB, CF) re-reviewed the qualitative codes from the provider and staff interviews and triangulated those themes with the survey items and free text answers.¹⁷ Our goal was to create a conceptual model that related pediatric healthcare institutional strengths or opportunities with patient-family experience to understand opportunities for future health service interventions or policy change.

Results

Provider/Staff Participants

A total of 25 providers and staff members participated in interviews/focus groups, with 12 participants across 4 focus groups and 13 individual interviews. Participants had a mean of 15.9 years in healthcare (range of 1.8-30 years) and 10.9 years specifically at the institution (1.8-23 years). Care domains covered included epilepsy, cerebral palsy, transplant, complex congenital heart disease, home ventilation, case management, care coordination, family services, and transition clinic. Represented disciplines within the focus groups included physicians, social workers, division managers, and director-level administrators.

Patient-Family Survey Participants

In our sample, 544 family caregivers replied (response rate 32.1%); 382 confirmed their child had a current disabling condition. Respondent and CWD characteristics are shown in Table 1. Mean parent age was 40.5 years old, while mean child age was 9.1 years old. A third reported a household income of less than $26,200 and 27.5% had an income of $104,800 or more. There was an almost even coverage split between public and private payors.

Table 1. Characteristics of Responding Parents and Participating Children with Disability.

(N=382)

Parent Characteristics	n (%)	Child Characteristics	n (%)
Parent Age in years		Child Age
Mean (SD)	40.5 (8.5)	Mean (SD)	9.1 (6.5)
Parent Self-Reported Gender Identity		Child Biological Sex
Male	32 (8.4)	Female	174 (45.5)
Female	349 (91.4)	Male	208 (54.5)
Trans/Non-Binary/Other	1 (0.3)
Parent Self-Reported Race Ethnicity		Child Race Ethnicity
Non-Hispanic White	175 (45.8)	Non-Hispanic White	149 (39.0)
Non-Hispanic Black	38 (9.9)	Non-Hispanic Black	42 (11.0)
Hispanic	128 (33.5)	Hispanic	129 (33.8)
Asian	29 (7.6)	Asian	27 (7.1)
Other/two or more races	12 (3.1)	Other/two or more races	25 (6.5)
Unknown	0 (0.0)	Unknown	10 (2.6)
Parent Household Income in last 12 months		Child Disability Category
Less than $26,200	126 (33.0)	Physical	215 (56.3)
$26,200 to $52,399	68 (17.8)	Developmental/Behavioral	153 (40.1)
$52,400 to $78,599	41 (10.7)	Sensory	127 (33.2)
$78,600 to $104,799	40 (10.5)	Intellectual	97 (25.4)
$104,800 or more	105 (27.5)	Psychological	59 (15.4)
Did not report	2 (<0.1)	Child Disability Number
Parent Language		1 disability	222 (58.1)
English	348 (91.1)	2 disabilities	79 (20.7)
Spanish	34 (8.9)	3 or more disabilities	81 (21.2)
		Primary Payor
		Public (Medicaid)	189 (49.5)
		Private (Employer-based/Commercial)	192 (50.3)
		Missing	1 (<0.01)

Patient-Family Survey Results

Among parents of CWD, 283 (74.1%) reported their child needed HCBS, most commonly physical/occupational/speech/behavioral therapy (79%), school-based supports including IEP/504 plan assistance and social work services (65%), or case management services (21.6%) (Table 2). Two-thirds of parents reported at least one barrier to accessing HCBS and one-third experienced >3 barriers. The most common barrier was knowledge/process (e.g., not knowing what to ask for, 37.8%) followed by eligibility/coverage (33.6%) (Table 3). No difference in barrier type or frequency was associated with specific parent/child characteristics.

Table 2: Parent-Report of Home- and Community-Based Services Needed by Children with Disabilities.

(N=382)

Home- and Community-Based Service, Supply, or Support	Parent Reported Child Needed N (%)	Parent Reported Barrier N (%)
None	104 (36.7)	---
Therapies (such as physical, occupational, behavioral, speech/feeding)	215 (79.0)	96 (44.7)
Assistance with Individualized Education Plans or 504 Plans	105 (37.1)	29 (27.6)
School-base social work services	79 (27.9)	14 (17.7)
Case management (such as helping make appointments or get services)	61 (21.6)	15 (25.6)
Adaptive programs in the community (special recreation camps, day programs, etc.)	54 (19.1)	24 (44.4)
Transportation services/modifications (help to/from doctor’s appointments, wheelchair accessible vehicle)	50 (17.7)	19 (38.0)
School-based testing	44 (15.5)	6 (13.6)
Respite care	33 (11.7)	22 (66.7)
In-home clinical care (such as home nursing)	28 (9.9)	10 (35.7)
Legal services (such as guardianship, housing rights, safety planning)	27 (9.5)	3 (11.1)
Home safety assessments or modifications	20 (7.1)	5 (25.0)
In-home support for activities of daily living (home health aide, personal care assistant, etc.)	17 (6.0)	9 (52.9)
Service animal	11 (3.9)	7 (63.6)
Vocational rehabilitation (helping your child/teen with getting a job or job skills)	8 (2.8)	3 (37.5)
Other service, support, or supply	30 (10.6)	8 (26.7)

Table 3. Type of Parent-Reported Barriers to Accessing Home- and Community-Based Services Needed by Children with Disabilities.

(N=283. Percentages add up to >100% as some reported >1 barrier.)

Barriers grouped by theme	N (%)
Knowledge or process barrier	107 (37.8)
Did not know what to ask for	58 (20.5)
Did not know who to ask or talk with to get it	53 (18.7)
Did not believe that it would be possible for me to get it	38 (13.4)
Did not have the time to figure out how to access the service or supply	34 (12.0)
Lack of training or experience in my child's condition	19 (6.7)
Application process was hard to complete	19 (6.7)
Online material was not user friendly	9 (3.2)
The material or information was not available in my native language	3 (1.1)
Eligibility or coverage barrier	95 (33.6)
Out-of-pocket costs	47 (16.6)
Not included under insurance plan	39 (13.8)
Currently on a waitlist	32 (11.3)
My family or child did not meet the income criteria to qualify	27 (9.5)
Delay in insurance approval	21 (7.4)
My child did not meet the medical criteria to qualify	9 (3.2)
Accessibility barrier	33 (11.7)
Location/distance was too far	26 (9.2)
Parking was challenging	8 (2.8)
The location was not disability friendly	3 (1.1)
COVID-related barrier	88 (31.1)
COVID-19 pandemic related restrictions, changes, or other reasons	---
Other	21 (7.4)
Other reasons/barrier to getting service, support, or supply	---

Qualitative Analysis of Provider/Staff Interviews and Patient-Family Surveys

Following SWOT analysis of provider and staff focus groups and patient-family surveys, several themes emerged from the extracted codes. Identified themes with select representative quotes can be seen in Figure 2.

Figure 2:

Thematic Figure of Strengths, Weaknesses, Opportunities, and Threats (SWOT) Analysis Regarding Home- and Community-Based Services

Strengths.

Providers and families noted several strengths of the institution. One theme was the availability and physical presence of certain resources for families within the hospital. A Family Learning Center provides materials related to medical conditions and disabilities. This multi-use space provides families an appropriate home for “parent education class[es] and trying to establish that model of teaching away from the bedside” (Administrator 1). A library of materials for families is available on the hospital intranet, as are specialized teaching brochures and videos within the hospital on-demand video system, which is integrated with nursing teaching protocols in the electronic health record. Brochures for several state-based HCBS are available at satellite clinics.

Another strength was the efficacy of support services, including social workers and case managers who are available through individual specialty clinics or inpatient hospital teams to help with financial or transportation assistance. Provider comments frequently noted the helpful efforts of support services and staff, with one provider saying, “[The services/program we offer are] very patient and family based…Everybody has their mission right and that's how the hospital setup has worked so well, is that you know the case managers focus on this, and the social workers focus on this, and the providers focus on this other thing” (Attending 1). Family comments also reflected this, remarking that with the introduction of a care coordinator, “We have felt more supported and aware of options we hadn’t considered” (Parent 1).

Available funding assistance for services related to disability through particular insurance providers was also noted as a strength if patients and families are able to obtain them. Providers repeatedly mentioned insurance-specific care coordinators as an important service “to be able to help our care [coordinators] with Medicaid issues and concerns” (Social Worker 1). Finally, the strengths of collaborations with several local and national associations were highlighted, including the American Academy of Pediatrics and subspecialty-specific foundations such as the Cystic Fibrosis Foundation, where providers can pair “another patient or a family with a family, as kind of a social support network” (Attending 2).

Weaknesses.

Several themes emerged regarding potential institutional weaknesses. While some resources are available to assist families in obtaining HCBS, there do not appear to be rigorous processes to identify which patients would benefit from or are receiving HCBS. Providers and clinics often rely on families to express a need for HCBS, and there is frequently a lack of ownership regarding who is responsible for providing families with resources or referrals. One provider suggested that “we could do a better job of having a formal screening process” (Attending 3). Families similarly stated that providers should “be sure the question is asked if any supports are needed. We often don’t know that something is available unless someone tells us” (Parent 2). Within our institution, the onus of identifying any need for resources or referrals lies with individual providers in specific clinics. While some clinics screen for social influencers of health using formal screening tools, others rely on patient and family interviews. Social workers and care coordinators work within individual clinics and are dependent on referrals from providers in order to provide appropriate services. The Illinois Title V program provides case management and care coordination services, but referrals from providers or social workers are often needed to initiate assistance.

Additionally, providers often do not know what resources families need or how to help families access them. Family comments reflected the lack of provider assistance with accessing HCBS; one family urged providers not to assume “we know everything” and to “have options for help” (Parent 3). One caregiver desired more information regarding services and resources outside the hospital: “We have found all of these resources on our own. [The hospital] should do a better job having a designated person inform families. The outside resources were the most helpful to us in our child's journey” (Parent 4).

While it is unclear if families who desired more information regarding HCBS access were already receiving care coordinator or social work support (an important limitation of this survey), access to such supports is also a weakness of our institutional system. Non-clinical staffing challenges (e.g., social workers) were frequently mentioned as a driver for gaps in referrals and information sharing. Providers noted the stress that staffing difficulties place on all members of the team: “I don't know when we're supposed to have the time or the bandwidth to actually ask about these and do something about them…the time and the follow-up, and the paperwork, and the appeal letters, and the discussion with the social worker or the nurse” (Attending 2).

Opportunities.

Providers, staff, and families touched on several external opportunities for expanding HCBS accessibility. A central theme for providers and staff was providing additional information regarding HCBS to both providers and families. Families echoed this sentiment, noting “there’s definitely a gap in the home care sector. Things like bedtime, driving, and care deserve some attention too but it’s not very clear who to get help from” (Parent 2).

The need for improved systems of communication also emerged during the analysis. Providers and families alike noted that physicians were often unaware of HCBS that patients were receiving, desiring a “universal care coordination system” between providers and services. One staff member said, “I would like to see a more robust relationship between our [assessment hospital] providers and primary care,” specifically mentioning better connections and ability to refer between hospital-based subspecialists and community-based primary care providers, including Federally Qualified Health Centers, as well as better electronic appointment tracking during the transition to adult care (Administrator 2).

Finally, providers and staff also noted opportunities for increased funding for disability-related services, equipment, and supplies, as not all patients may be eligible for programs that provide funding assistance through insurance carriers: “I'm always looking for funding, whether it's an adaptive bicycle, or we have some kids who can't get a hold of a wheelchair right away” (Social Worker 2). Comments centered on the importance of advocating for more funding with organizations dedicated to assisting children with disability, the use of state programs to assist with coordination of waivers programs (e.g., Title V program), and assistance procuring and paying for specialized equipment.

Threats.

A common threat involved bureaucratic and accessibility barriers to HCBS, including required provider referrals or documentation for specialists/therapists. Staffing difficulties can make obtaining this information or scheduling services even more difficult, potentially leading to frustration for patient-families, physicians, and staff. One provider stated, “Even just getting a vendor to call them back can take months. I mean, it's absurd” (Attending 4). Feedback from families included the fact that “[The Title V program] is understaffed. Home health agencies are short nurses. Equipment ordering is months and months behind” (Parent 5).

Comments frequently outlined the lack of financial assistance for certain HCBS such as home nursing, day programs, respite care, therapies, and meal assistance. Providers and staff expressed frustration with lack of insurance coverage for equipment or care coordination: “The big missing factor here is we really don't have a good way for our neediest patients on Medicaid to get care coordination through our program” (Administrator 3). Providers noted knowledge gaps in identifying providers who take state-based payment, particularly in transitioning to adult providers.

The final theme involved barriers to care within external sources, including inaccessible or unaffordable housing, transportation, school services, and state programs. Providers expressed they were unable to help patients access HCBS due to high clinical load and other competing interests, and as one family noted, “It is extremely difficult to find home based health workers that want to work with children with significant special needs” (Parent 6). Language barriers due to a lack of interpreter services among HCBS were thought to have an outsized impact on CWD and also affect providers/staff. Immigration status may affect access to HCBS; even if undocumented families are eligible for services, they may not want to apply for benefits. Additionally, many services, including behavioral health, may have lengthy waitlists or a lack of qualified providers/therapists for specific conditions.

Discussion

Across provider/staff interviews and patient-family surveys, HCBS were identified as a common and important—but difficult to obtain—need for CWD, with knowledge and process issues being the most common barriers identified by patient-families. We identified several institutional strengths but also multiple weaknesses, including a lack of protocols or methods to identify and track patients needing or receiving HCBS, lack of provider knowledge regarding resources, and staffing difficulties. Although external threats to obtaining HCBS such as financial responsibilities, transfer of care, and eligibility requirements were recognized, opportunities for improvement were also identified, including providing more information regarding resources/services to providers and patient-families, increasing funding support, and determining new methods to improve transitions of care and provider and staff communication. Overall, this project highlights the need for a comprehensive approach to ensuring that CWD in our service communities have access to HCBS.

Financial barriers were identified by patient-families and providers/staff as both a threat to obtaining HCBS and an opportunity for improvement. Notably, CWD are estimated to comprise 4.5% of commercially insured children, with estimated annual spending that is 23-54% higher than by children with complex medical conditions without disabilities.⁷ However, HCBS are typically not covered by private insurance, and access barriers have only worsened through the COVID pandemic.³⁶ Only 36% of children with special health care needs were covered by only Medicaid or Children’s Health Insurance Program in 2019.^15,36 While spending for CWD is increasing, it may not be fully addressing all the services that allow patients to participate fully in society.

This mixed-methods project does have limitations. It was a descriptive project conducted at a single academic institution and so is not generalizable. However, the identified themes may provide transportable lessons to other pediatric academic institutions. Only 32.1% of family caregivers responded to the survey—perhaps in part due to our use of an electronic survey with a high eHealth and reading literacy-level—and thus highlights the presence of selection bias. Selection bias within the focus groups/interviews conducted among providers is similarly possible given only select areas of the hospital were invited—however, we had participation across the institution and roles, which we believe helped reduce this bias. As this project was funded by an internal institutional grant, the scope and timeline were limited, and we chose to focus our provider/staff recruitment efforts on clinics and areas within the hospital that treated the highest population of CWD. Although we were unable to perform focus groups with all divisions that care for CWD, we believe we included a large enough population of providers and staff that care for CWD regularly to minimize potential bias. Finally, focus groups and survey results may have been subject to recent case bias—giving greater importance to more recent cases or concerns as opposed to considering a more global view of issues.

Conclusions

This project’s findings could spark vital changes to improve access to HCBS from multiple avenues and will hopefully spur additional commitment from academic institutions moving forward, including our own. One path would involve bringing together key stakeholders within our institution and working with patient-families to create sustainable, dedicated programming to address HCBS gaps and leverage current best practices.³⁷ This project also indicates the need for improved and more robust screening/referral processes for patient-families that may benefit from HCBS. Our institution is investigating methods to identify CWD in the electronic health record and integrate more disability-related questions into our existing social influencers of health screening process. Improving provider and trainee education regarding available HCBS and referral processes may also reduce barriers to optimal healthcare for CWD by increasing provider knowledge and competence through enhanced training. This process has already begun with our current project partnering with CWD and their families, teachers, and school administrators to develop an ideal curriculum regarding pediatric disability and ableism. This project accentuates the need for improved processes to dismantle barriers and expand access to HCBS for children who need these fundamental services.

What’s New:

Providers and parents of children with disability identified multiple barriers to obtaining important home- and community-based services (HCBS), which can negatively impact children’s well-being. Opportunities for improving access to HCBS were identified and will be used for future intervention development.

Abbreviations:

CWD

Children with Disability

CWDA

Children with Disability Algorithm

HCBS

Home- and community-based services