Key Stakeholder Perspectives on Obstacles to an Autism-Specific Medicaid Waiver Service Delivery Model

Abstract

Background:

Children and youth with autism spectrum disorder (ASD) have significant, multi-system needs that require supports, such as the Autism Waiver (AW) service delivery model. This study aimed to identify and describe characteristics of the AW, define obstacles and strengths in the provision of adequate services, and provide recommendations for improving overall effectiveness.

Methods:

This mixed-methods exploratory study used an electronic survey to gain information and perceptions of AW provider agency directors (n=27) and service coordinators (n=30).

Results:

The key barriers reported were the shortage of qualified staff, inadequate staff training, complexity of cases or symptom severity of clients, and lack of communication at multiple levels throughout the agency as well as with parents.

Conclusions:

Recommendations include reinforcing the workforce through higher salaries, greater training, and communication interventions. These strategies may reduce staff turnover and shortage, lighten the caseload, reduce the waitlist period, and improve the effectiveness and responsiveness of AW services.

Introduction

Need for Specialized Supports

Children and youth with autism spectrum disorder (ASD) have significant, multi-system needs (Rosen, Spaulding, Gates, & Lerner, 2019) and often experience neuropsychological, behavioral, learning, and other health challenges that can impede overall functioning (Schreibman et al., 2015). Specialized supports are necessary for promoting and facilitating learning, improving quality of life, preventing and preempting behavioral challenges, and optimizing independence in children and youth with ASD over the lifespan (Schreibman et al., 2015). With the continued increase in ASD prevalence within the U.S. (Shaw et al., 2020), and consequentially, its sustained role as a public health concern, there is an elevated need for specialized supports.

Families raising children and youth with ASD additionally experience significant burdens and challenges that require specialized supports. The wide range of functional systems (e.g., language, social, behavioral) and comorbidities present in individuals with ASD (Salomone et al., 2018), and difficulties accessing properly trained providers (Houser, McCarthy, Lawer, & Mandell, 2014) may cause families to experience financial burdens (Ouyang et al., 2014; Parish, Thomas, Williams, & Crossman, 2015), increased stress and mental health concerns (Hayes & Watson, 2013; Johnson, Frenn, Feetham, & Simpson, 2011), and lower quality of life (Vasilopoulou & Nisbet, 2016). High-quality, evidence-based supports are much needed to provide family reprieve and aid to alleviate some family stress, as well as to optimize functional outcomes for children and youth with ASD.

Home- and Community-Based Services Waivers

In response to these established needs of families of children with ASD, home- and community-based services (HCBS) waivers were authorized by Section 1915(c) of the Social Security Act, also known as Medicaid (Centers for Medicare & Medicaid, 2014). These provide opportunities for Medicaid beneficiaries to receive services in their community and/or home, rather than in an institution or another restrictive setting. Several populations benefit from HCBS, including people with intellectual and developmental disabilities, mental illnesses, and physical disabilities (Centers for Medicare & Medicaid Services, 2021). States develop and operate their respective HCBS programs based on the needs, priorities, and legislative guidance from the state. Originally, HCBS intellectual and developmental disabilities waivers were designed to meet the needs of people with intellectual disabilities. Therefore, if ASD is not included as an eligible diagnosis, and if an individual with ASD does not have a co-occurring intellectual disability, they may not be eligible for services under intellectual disability through that state (Hall-Lande, Hewitt, & Moseley, 2011; U.S. Government Accountability Office, 2006). In addition, research clearly shows that intervention with applied behavioral analysis therapy during the early childhood years is critical for improving cognitive and adaptive functioning (see cites health affairs), reducing lifelong supports and associated costs (Järbrink & Knapp, 2001; Hall-Lande, Hewitt, & Moseley, 2011). In light of these specialized needs, heightened demand for services, and long waiting lists, states have increasingly developed waivers specifically for children with ASD; the development of adult autism waivers remains less frequent (Friedman, 2017; Hall-Lande, Hewitt, & Moseley, 2011; Miller, Merryman, Eskow, & Chasson, 2016).

Autism Waiver

The Autism Waiver (AW) program in Maryland, established in 2001, is the largest state HCBS waiver specifically for children with ASD in the United States (Eiken & Burwell, 2009). With federal and state aid, AW programs have been able to provide services tailored to children and youth with ASD (Eiken & Lelchook, 2013). These services include intensive individual support services, therapeutic integration and intensive therapeutic integration, respite care, environmental accessibility adaptations for the home, residential habilitation, adult life planning, and family consultation (see Table 1 for details). While some of these services overlap with those provided under a general intellectual and developmental disabilities waiver (e.g., adult day services, respite services, behavioral support, family training, environmental modification, employment supports) others highlight the specialized needs of children with ASD (e.g., intensive, in-home behavioral therapy, speech therapy, occupational therapy, social skills training, children’s respite care) (Hall-Lande, Hewitt, & Moseley, 2011). Service coordination occurs through the local school systems (see below for more in-depth information on service coordinators).

Table 1.

Autism Waiver Services

Service Type	Meaning
Intensive individual support services	One-on-one goal-directed interventions provided by direct care workers
Therapeutic integration and intensive therapeutic integration	Structured, interactive afterschool programs encouraging play and leisure with one-on-one and three-on-one staff (intensive) to client ratio
Respite care	One-on-one support in the home and community
Environmental accessibility adaptations for the home	Monetary supports for safety upgrades in the home
Residential habilitation	Placement in a community-based, intensive group home or alternative living units
Adult life planning	Preparatory transition service to adult service delivery
Family consultation	Caregiver training on participant-related needs

The eligibility criteria for AW waivers and other related HCBS differ state by state. A list of Medicaid waivers for each state can be found here: http://medicaidwaiver.org/index.html. In terms of Maryland, children are eligible for the AW if they: (1) reside within that state, (2) have an ASD diagnosis, (3) are between the ages of 2–21, (4) require an Intermediate Care Facility for the Intellectually Disabled (ICF-ID) level of care, (5) have an Individual Family Service Plan (IFSP) or Individualized Education Program (IEP) with 15 hours of special education and related services, (6) must be able to be served in the home and community with AW services, (7) must meet additional AW medical and technical eligibility criteria, and, (8) must meet financial criteria. An individual’s income and assets are reviewed to determine financial eligibility. The child’s monthly income may not exceed 300% of Social Security Income (SSI) benefits, and the countable assets may not exceed $2,000 or $2500 (depending on eligibility category). Eligibility is determined by a Multidisciplinary Team, which is sometimes but not always the IEP or IFSP team (depending on the county). The team always includes the child’s family, and ideally a health care provider who is familiar with the child and family. To qualify for AW services, the child’s school psychologist and the Multidisciplinary Team must certify the child has ASD, meets the institutional level of care and technical eligibility criteria ([State Name] Disability Law Center 2004; [State Name] State Department of Education, 2017).

Existing Research on Autism Waiver Effectiveness

Despite the sizable costs associated with these state AW programs (Rizzolo, Friedman, Lulinski-Norris, & Braddock, 2013; Velott et al., 2016), there is a general paucity of scientific literature available on these programs and their effectiveness. A few studies have begun to address this gap in the literature (Eskow, Chasson, & Summers, 2015, 2019; Eskow, Pineles, & Summers, 2011; Eskow & Summers, 2019; Timberlake, Leutz, Warfield, & Chiri, 2014; Warfield, Chiri, Leutz, & Timberlake, 2014), and have shown that waiver services are associated with positive impacts on family quality of life, perceived progress for the child, and enhanced ability for parents to gain employment when comparing families receiving waiver services to families waiting on the registry for services (Eskow et al., 2015, 2019, 2011; Eskow & Summers, 2019). A recent scoping review (McLean, Hoekstra, & Bishop 2021) found preliminary evidence that HCBS waivers (for people with intellectual and developmental disabilities) benefit states economically, reduce unmet healthcare needs, increase parental ability to continue working, and reduce racial disparities in care access. Although this manuscript reviewed waivers for people with intellectual and developmental disabilities broadly, most of the research cited focused on ASD.

While literature suggests that the AW program is providing aid to families (Eskow et al., 2015, 2019, 2011; Eskow & Summers, 2019), it is unclear if current barriers to the service delivery model are attenuating potential positive effects of the AW program. The current AW service delivery model has several areas of concern for providing effective services. First, the waiver was originally designed to aid children and families from early life through adolescence, from age one to 21. However, slots for AW services were rapidly filled, and a registry (i.e., waitlist) had to be created. At the time of the current investigation, the registry has grown substantially and the estimated wait for services is approximately eight years (Pathfinders for Autism, 2020; The Coordinator Center, 2021). With official eligibility for the waiver determined after removal from the waitlist, it is unlikely for children to receive services at early ages, which greatly reduces the waiver’s possible impact. Second, the AW’s main focus was to support individuals with ASD, and therefore, it is unclear if the waiver has the capacity to provide the appropriate aid for the psychiatric co-occurring conditions associated with ASD, particularly for older individuals whom the waiver currently services. Concurrent psychiatric conditions may complicate client cases, which could necessitate a higher qualification-standard for service providers, ultimately leading to greater costs to the AW program.

By definition, AW agencies are agencies that provide AW services. These agencies have been approved to provide HCBS waiver program services by the Department of Disability Services/Developmental Disabilities Administration, and the Department of Health Care Finance (DHCF). Agencies that provide AW services often, but not always, serve a broader population such as people with disabilities, and therefore, may provide services that fall outside the scope of AW services, such as summer camps, and may accept other forms of medical assistance, veteran’s benefits, other forms of insurance, or private pay. While AW staff are meeting general state requirements for their roles in AW service provision, since each AW agency operates as an independent entity, we hypothesized that there will be little standardization in trainings, which may translate to a workforce of direct care workers who are not uniformly, or even well-prepared, to provide care aligned with evidence-based practices (EBPs) or to communicate effectively with families. Such skills are needed for improved outcomes in children and adolescents with ASD (Eskow & Summers, 2019), as well as for family confidence and satisfaction with the services.

Study Objectives

Given these potential areas of concern, the current study sought to obtain insights into the AW program from two key stakeholders - provider agency directors and service coordinators. Provider agency directors are the heads of AW agencies, and therefore, oversee employment and training of the direct care workers that provide direct services to children and youth with ASD. They have in-depth knowledge about the needs of direct care workers and other employees within their agency, barriers and facilitators to service provision, and the overarching state of the AW service delivery model, especially on key aspects such as training and overall efficiency. As decision-makers and heads of the AW provider agencies, provider agency directors provide us with a perspective overlooking the many providers that work in this area. By exploring this group, we have the opportunity to determine what kind of decisions are being made, and if these decisions end up contrasting with other important stakeholders’ perspectives (service coordinators, families, and later, direct care workers).

Complementary insights were sought in this study from service coordinators, who are employed through the school districts in Maryland. Some school systems contract with service coordination agencies or use the local government, such as the health department. Other school systems provide the coordination service directly. The AW contact in the local school system assigns a service coordinator to each family as soon as the child is eligible and may apply for services (Maryland State Department of Education, 2019). It is important to note that although service coordination is part of the AW services, it is not provided by AW agencies (like the other services). Instead, service coordination is provided by the local school district. Service coordinators serve as the point of contact for both families and provider agencies regarding the determination of the array of family services, and which provider agencies families can access. Through their role as a point of contact, service coordinators can provide valuable information on both families and provider agencies and help determine the primary barriers to high-quality services. They are also in charge of developing the Plan of Care for families, a formal document that outlines the necessary services, and hours for each service, so they have direct experience in understanding the most “important” and “necessary” services for families on this waiver. This Plan of Care is developed in tandem with the Multidisciplinary Team and must be approved by the Operating State Agency, in this case, Maryland.

By exploring the perspectives and information provided by these two groups of key stakeholders, a clearer understanding of the current AW service delivery model can be obtained, including areas of strength and those in need of improvement. The aim of this study was to take an initial step toward identifying and describing characteristics of the current AW service delivery model, defining strengths and potential obstacles to the provision of adequate AW services, and providing recommendations for improving effectiveness.

Methods

Participants

The current study consisted of Autism Waiver (AW) provider agency directors and service coordinators in one Mid-Atlantic state. Participants were attendees at a mandatory training workshop held by the state Department of Education. Inclusion criteria for service coordinators were that they were currently employed by the state. Provider agency directors had to be currently employed by an agency approved by Maryland State Department of Education to deliver AW services. All participants attending the training workshop were eligible for the current study and were invited to participate in the study at registration for the training event. Our university Institutional Review Board (IRB) approved the study protocol. Fifty-seven individuals (n=30 service coordinators; n=27 provider agency directors) gave informed consent and completed the entire survey during the training workshop.

Procedure

At registration for the training workshop, participants consented and enrolled in this online survey study electronically through the survey platform, Qualtrics. All participants were asked to complete the survey at some point during the 5-hour training workshop. Service coordinators and provider agency directors completed separate surveys, which included questions developed specifically about the AW service delivery model, the participant’s role within the Waiver, and the barriers and facilitators they experienced with implementing the Waiver (Appendix). Surveys were de-identified to ensure confidentiality. The study team distributed an individual identification number to each participant after survey registration, which was used in the subsequent analysis in the place of a participant’s name. Only the participant and the research team could link the identification number to the participant’s name. Participants were instructed to only disclose information that they were comfortable with sharing.

Measures

Two custom surveys were developed and administered: one targeted at AW agency directors and the other at AW service coordinators. Questions were developed through an iterative process between the current study team, other AW researchers, and AW stakeholders (i.e., AW provider agency directors and service coordinators). These surveys included demographic information, questions about characteristics of AW agencies, direct care workers, and clients, and challenges encountered, as described below. The surveys included both quantitative items and open-ended, qualitative questions. While only the most salient survey items were included in this analysis, the full surveys can be found in the Appendix.

Demographic variables.

Demographic information included age, sex, race/ethnicity, and level of education for service coordinators and provider agency directors.

Service Coordinator Autism Waiver Questionnaire.

The AW-specific survey questions for the service coordinators covered topics such as general professional position information and work responsibilities, challenges and supports to service provision, working with families, and their clientele. Example questions include, “How long have you been working on the Autism Waiver?” (example demographic question) and “In addition to Autism Spectrum Disorder, what other health-related concerns have you seen in clients on the Autism Waiver?” (example quantitative question) and “What concerns do parents commonly express about the AW services?” (example qualitative question).

Agency Director Autism Waiver Questionnaire.

The AW-specific questions for the directors of the provider agency overlapped with the service coordinator survey. Questions elicited information about professional position descriptions and work responsibilities, challenges and supports to service provision, services provided through the agency, experience working with families, and understanding the provider agency and types of personnel. Example questions include, “What services does your agency provide through the Autism Waiver?” (example quantitative question), “What are the main reasons for direct care staff turnover in your provider agency?” (example qualitative question), and “What are the obstacles to providing adequate services to families through the Autism Waiver?” (example qualitative question).

Thematic Analysis

Two open-ended, qualitative questions were analyzed in this survey. First, directors and service coordinators were asked, “In addition to those already in place, what are the top 3 supports that would enable you to do your work more effectively?” Second, service coordinators were asked to “Name the top 3 positive feedback that parents commonly express about the AW services.” The open-ended, qualitative responses to these questions were analyzed using inductive thematic analysis, in which the first-author initially reviewed the responses with an open mind, then highlighted sections of the responses and labeled those sections with codes that describe their content. Emergent coding was such that the codes emerged from the responses, rather than imposing predetermined codes on the data. Lastly, the first-author looked over the codes, identified patterns between them, and collapsed these codes into larger themes, which captured the respondents’ key points (Braun & Clarke, 2006; Vaismoradi, Turunen, & Bondas, 2013). For example, the question about positive parental feedback included responses such as “break”, “relief”, “respite”, “allows parent to spend time with other children,” all of which were coded and eventually categorized as belonging to the theme “Respite,” as described in the Results below.

Statistical Analysis

Simple descriptive statistics such as the count (%) and mean (SD) for questionnaire items were provided for both surveys. For example, agency directors were asked to select the number of AW employees that work at their agency (<5, 5–25, 26–50, 51–100, 101–150, >150). In some cases, respondents could select more than one answer-choice, in which cases the sum of the percentages may be greater than 100%. One instance of this was when service coordinators were asked to select from a list of the most common mental and behavioral concerns they observed among AW clients. Given these conditions are not mutually exclusive, coordinators could select multiple concerns, such that the sum of concerns did not sum to 100% (e.g., both intellectual or developmental disability and anxiety each were endorsed by over 90% of respondents as one of the most common conditions). Given the relatively small samples of directors and service coordinators, we were not able to assess whether demographic and agency factors were associated with survey responses. All analyses were performed in R Version 4.0.3 (2020–10–10; R Core Team, 2020).

Results

Agency and Respondent Characteristics

Most respondents were between ages 25–44 (agency directors) or 25–54 (service coordinators) years, female, White, or Black/African-American, and had a Bachelor’s or Master’s degree (Table 2). The majority (17/27; 63%) of directors reported that there were 100 or more total employees at their agency, though most (18/27; 67%) responded that 50 or fewer employees provided AW services. Agencies were reported to provide services to between 1–24 counties, with a mean of six counties (SD 5.8). About half of respondents reported being employed by their current agency (agency directors) or working with the AW (service coordinators) for over five years, with about 15–20% reporting 2–5 years, 20% 1–2 years, and the remaining 10–15% for less than one year. Most directors (10/27; 37%) reported it takes between one week to one month or 1–2 months (10/27; 37%) to begin providing at least one billable service to a family that was newly approved for the Waiver. Service coordinators reported having a range of one to 70 clients (mean 32.4 (SD 20.0)) and spending on average 1.8 hours (SD 2.5) with each family per week, though some coordinators reported spending up to 12 hours per week with certain families.

Table 2.

Demographic Characteristics of Respondent/Agency

	Director/Administrator (n=27)	Service Coordinator (n=30)
	Count (%)
Age (years)
18–24	2 (7%)	0 (0%)
25–34	9 (33%)	6 (20%)
35–44	11 (41%)	11 (37%)
45–54	1 (4%)	9 (30%)
55–64	3 (11%)	1 (3%)
65–74	1 (4%)	1 (3%)
Sex
Female	20 (74%)	26 (87%)
Male	7 (26%)	3 (10%)
Race
White	15 (56%)	16 (53%)
Black/African-American	9 (33%)	6 (20%)
Asian	2 (7%)	1 (3%)
Multiracial	1 (4%)	1 (3%)
Highest level of education
No college degree	3 (11%)	0 (0%)
Bachelor’s degree	8 (30%)	12 (40%)
Master’s degree	15 (56%)	15 (50%)
Professional degree	0 (0%)	3 (10%)
Doctorate degree	1 (4%)	0 (0%)

Client characteristics, as Reported by Service Coordinators

Most service coordinators reported that AW clients were on average 13–21 years old. Service coordinators were asked to endorse which mental and physical health concerns they have seen among clients serviced by the AW. They recalled that the most common mental/behavioral health concerns were intellectual or developmental disability (29/30; 97%), anxiety (28/30; 93%), obsessive-compulsive disorder (27/30; 90%), self-injury (26/30; 87%), Attention Deficit Hyperactivity Disorder (23/30; 77%), conduct (aggression, destruction of property) (23/30; 77%), depression (13/30; 43%), and suicidality (5/30; 17%). The most common physical health concerns recalled by service coordinators were seizures (19/30; 63%), difficulty with sleeping (19/30; 63%), difficulty with eating (17/30; 57%), allergies (17/30; 57%), gastrointestinal symptoms (i.e. reflux, heartburn, indigestion) (15/30; 50%), asthma (10/30; 30%), or other (3/30; 10%). These data indicate high levels of co-occurring conditions in individuals with ASD served by the AW.

Services Provided, as Reported by Directors

Directors were asked to select which of eight possible predetermined services (see Appendix, Q3 on director survey) their agency provided through the AW. Services that were provided by over half of the agencies included respite care (22/27; 81%), intensive individual support services (19/27; 70%), family consultation (18/27; 67%), and therapeutic integration (14/27; 52%). However, intensive therapeutic integration (10/27; 37%), adult life planning (7/27; 26%), residential habilitation (3/27; 11%), and environmental accessibility adaptations (1/27; 4%) were provided in less than half the agencies represented by the AW directors.

Obstacles to the Provision of Adequate Autism Waiver Services

Only 7% (2/30) of service coordinators reported that direct care workers were fully able to meet ongoing service needs (e.g., adult life planning) requested by families, at least 90% of the time. Well over a third (13/30; 43%) of service coordinators reported that direct care workers were only able to meet the service needs of the family less than 50% of the time. Both directors and service coordinators were asked “What are the obstacles to providing adequate services to families through the Autism Waiver?” Both Respondents were provided a list of four predetermined obstacles and could select all that applied, as well as name other obstacles not listed, or indicate there were no obstacles to service provision (see Appendix, see Q16 and Q14 on director and service coordinator surveys, respectively). Directors reported that the most common obstacles to providing adequate services were a shortage of qualified staff (19/27; 70%), difficulties with parent communication (12/27; 44%), inability to meet parents’ scheduling needs (9/27; 33%), inability to meet client needs (6/27; 22%), and other obstacles (8/27; 30%). Service coordinators reported that the most common obstacles were a shortage of qualified staff (21/30; 70%), difficulties with parent communication (19/30; 63%), inability to meet increased client needs (12/30; 40%), inability to meet parents’ scheduling needs (10/30; 33%), or other obstacles (7/30; 23%). Only 15% (4/27) of directors and 3% (1/30) of service coordinators felt there were no obstacles to providing adequate services (Table 3).

Table 3.

Obstacles to Providing Adequate Services

Obstacles	Director/Administrator (n=27)	Service Coordinator (n=30)
	Count (%)
No obstacles	4 (15%)	1 (3%)
Shortage of qualified staff	19 (70%)	21 (70%)
Cannot meet parent scheduling needs	9 (33%)	10 (33%)
Cannot meet increased participant needs	6 (22%)	12 (40%)
Parent communication difficulties	12 (44%)	19 (63%)
Other	8 (30%)	7 (23%)

Service coordinators were asked to report what concerns parents commonly expressed about AW services. Coordinators were provided a list of seven predetermined concerns and could select all that applied, as well as name other concerns not listed, or indicate parents did not have any concerns (see Table 4 & Appendix, Q16 on service coordinator survey). The top parental concerns were staff turnover (26/30; 87%), availability of direct care workers (25/30; 83%), long waitlist (22/30; 73%), and staff inadequacy to address child behavior (20/30; 67%) (Table 4). None of the service coordinators reported that parents did not have any concerns about AW services.

Table 4.

Concerns about Services and Reasons for Clients not Improving, as reported by Service Coordinators

	Parent concerns commonly express about AW services	Reasons for clients not improving
	Count (%)
Staff adequacy to address child behavior	20 (67%)	15 (50%)
Need more hours than allowed for AW services	8 (27%)	3 (10%)
Transportation to/from community outings	16 (53%)	3 (10%)
Staff turnover	26 (87%)	18 (60%)
Availability of direct care workers	25 (83%)	20 (67%)
Adequacy of staff training	13 (43%)	11 (37%)
Waitlist time too long	22 (73%)	14 (47%)
Symptom severity	---	18 (60%)
Family difficulties	---	15 (50%)
Other	5 (17%)	3 (10%)

Service coordinators were similarly asked to indicate the reasons some of their clients were not exhibiting improvement through the AW services. In addition to the seven predetermined concerns mentioned above, symptom severity and family difficulties were also listed as response options (see Table 4 & Appendix, Q27 on service coordinator survey). Service coordinators indicated that the top reasons for the lack of client improvement were the availability of direct care workers (20/30; 67%), direct staff turnover (18/30; 60%), and symptom severity (18/30; 60%). Notably, half (15/30) of the service coordinators selected family difficulties as a reason some clients did not improve (Table 4). When asked specifically about the challenges working with families and provided a list of eight predetermined challenges, service coordinators reported the top challenges were including inadequate family follow-through (21/30; 70%), challenging or difficult interactions between parents and providers (19/30; 63%), scheduling home visits (16/30; 53%), and challenging behavior of clients (15/50; 50%) (see Appendix 20a on service coordinator survey).

Several of the barriers to effective AW implementation identified by directors and service coordinators were related to availability or shortage of qualified direct care workers and relatedly, high turnover of staff (Tables 3 and 4). When directors were given a list of thirteen reasons for direct care staff turnover, the most commonly reported were low salary (18/27; 67%), other job opportunities (16/27; 59%), and conflict with schooling (11/27; 41%) (Table 5). Most coordinators and directors reported that direct care workers entered their AW positions having less than one year (19%), 1–2 years (41%), or 2–5 years (30%) of experience, with a smaller proportion (7%) having more than five years of experience. Over half (15/27; 55%) of directors reported that a quarter or less of the direct care staff in their agency had a Bachelor’s degree. Similarly, most service coordinators reported that they themselves did not receive adequate training for their position, i.e., a minority of service coordinators reported feeling that their on-the-job training (8/30; 27%) and continuing training (6/30; 20%) was very adequate.

Table 5.

Main Reasons for Direct Care Staff Turnover, as Reported by Directors/Administrators

	Count (%)
Job too demanding/excessive workload	4 (15%)
Staff unable to work with participant population	2 (7%)
Case complexity	5 (19%)
Conflict with schooling	11 (41%)
Participant longer receiving services/moved away	6 (22%)
Staff moved away (direct care/service coordinator)	6 (22%)
Lack of support	2 (7%)
Salary too low	18 (67%)
Large number of systematic barriers	3 (11%)
High stress level	6 (22%)
Non-compensated travel	8 (30%)
Other waiver job positions	4 (15%)
Other job opportunities	16 (59%)
Other	5 (19%)

Positive Feedback from Parents as Reported by Service Coordinators

Service coordinators listed three positive pieces of feedback most often expressed by parents about the AW services. The top theme (1) that emerged was parents’ appreciation of respite, which allowed time to spend with other children and family members. The next theme (2), related to, but still distinct from the first, was that the AW helped the family get connected to resources, improved parenting effectiveness, and ultimately reduced family stress and helped with home life. Third (3), parents reported the AW services helped their child improve, especially in terms of behavioral challenges, activities of daily living, and the overall quality of life. Fourth (4), service coordinators reported that parents were grateful to providers and staff, in terms of their responsiveness, availability, and reliability. Parents reportedly found providers helpful and supportive, and both children and parents formed bonds with particular direct care workers. The last theme (5) was that the AW program helped children gain exposure to, and integrate with, the community, in part by helping with behavioral challenges that emerged in the community. Lastly, most (18/30; 60%) service coordinators felt that families had a lot of control over treatment planning decisions and most (23/30; 76%) felt that the majority of parents actively participated as partners.

Supports Needed as Reported by Directors and Service Coordinators

Directors and service coordinators were asked to suggest, through open-text responses, the top three supports that would enable them to work more effectively, in addition to those already in place. The most common themes that emerged were: (1) the need for improved communication at all levels including communication between the state department and service coordinators and between providers and families, (2) more staff (e.g., coordinators, direct staff) and greater access to training (especially remote/online trainings) of staff to ensure quality control, (3) smaller caseload, (4) the ability to compensate staff at a competitive rate, (5) increased reimbursement rates, (6) less paperwork with a better online program and ability to use electronic timesheets, and clerical support.

Discussion

Study Objective and Positive Aspects of Autism Waiver

The aim of this paper was to take an initial step toward identifying and describing characteristics of one state’s AW service delivery model, including defining preliminary strengths and obstacles to the provision of high-quality waiver services, and generating potential recommendations for improving effectiveness. A mixed-methods approach was employed to obtain information and perceptions of two key stakeholder groups - AW provider agency directors (hereafter, directors) and AW service coordinators.

There were positive aspects noted about the AW from service coordinators. More specifically, they shared positive feedback commonly expressed by parents. The most common themes were that the AW program helped parents with respite, improved home life and family stress by connecting parents with resources, helped the child improve their behavior and activities of daily living, and helped children gain experience in the community. Parents also reportedly expressed gratitude for the staff and providers, noting how helpful, supportive, and dependable they were.

Discordance between Expectations/Training and Reality of Service Provision

Still, both directors and service coordinators reported there were important obstacles to providing adequate services. Among the key barriers were the shortage of qualified direct care workers, inadequate staff training, and the complexity of cases or symptom severity of clients. As hypothesized, these barriers in part reflect a discordance between the training and expectations of direct care staff and the needs of increasingly complex clients with ASD served by the AW. In this study, most direct care workers had a Bachelor’s degree or less, and less than five years of work experience. These direct care workers were primarily serving clients between the ages of 13–21 years old and who experienced many co-occurring mental and physical health conditions. The services that direct care workers were expected to provide to these complex clients extended beyond the scope of training that they received. The result is that those with minimal training are responsible for clients having intense and diverse needs. A frequent theme that emerged from the data obtained from both stakeholder groups was the desire for more staff trainings, especially online trainings which tend to be easier for direct care workers to attend.

The main reasons for high direct care staff turnover, as reported by agency directors, were low salary, other job opportunities, and leaving the workforce to return to school. Together, these findings suggest that bolstering the workforce is critical through strategies such as increased salary, more frequent and accessible (e.g., online) trainings, and even revising the dominant modes for staff recruitment in order to hire direct care workers whose skills and expectations are aligned to serve the complex needs of the clients receiving services through the AW.

Staff Burnout

The extant literature on direct care workers within the context of autism and intellectual and developmental disabilities points to several potential determinants of staff burnout (Kozak et al., 2013) and turnover including employee, organizational, and service-recipient factors. Employee factors related to burnout or turnover include limited coping strategies and psychological capital (i.e., self-efficacy, optimism, hope, and resiliency) (Manzano-García & Ayala, 2017; Novack & Dixon, 2019), attitudes (Novack & Dixon, 2019), and personality (Hurt, Grist, Malesky Jr, & McCord, 2013; Novack & Dixon, 2019). Interestingly, provider demographic factors such as age, education, and level of experience were not significantly associated with burnout or turnover (Novack & Dixon, 2019). Organizational factors such as work hours and demands, as well as satisfaction with the job, pay, training, and supervision (Kazemi, Shapiro, & Kavner, 2015; Novack & Dixon, 2019), and organizational support in general (Mutkins, Brown, & Thorsteinsson, 2011) were associated with burnout or turnover.

Lastly, while challenging behavior in the client has been proposed as a cause of staff stress and burnout (Hastings, 2002; Hastings & Brown, 2002), the empirical evidence for this is mixed. Smyth and colleagues found that challenging behavior among clients with intellectual and developmental disabilities was associated with perceived stress and emotional exhaustion of support staff (Smyth, Healy, & Lydon, 2015). However, Kazemi and colleagues noted that neither client age nor ASD severity, as rated by the behavior technician, were associated with turnover (Kazemi et al., 2015). This literature emphasizes the need for greater organizational support, training, and psychological capital. While our study did not include direct care workers, and therefore did not assess burnout among these providers directly, prior literature suggests burnout is a strong determinant of lower morale, increased absenteeism, lower productivity, and increased turnover, and should therefore be probed further in future AW research (Bottini, Wiseman, & Gellis, 2020; Kozak et al., 2013; Maslach et al., 1986; Myles, Ormsbee, & Simpson 1991). Relatedly, service coordinators in our study reported having a mean of 36.8 clients and spending an average of 1.8 hours with each one per week, which equates to an estimated workweek of at least 66 hours, raising the risk of occupational illness and injury, as well as poor job satisfaction (Dembe, Erickson, Delbos, & Banks 2005).

Communication Barriers

This study also revealed that lack of communication at multiple levels throughout the agency, as well as with parents, compounded the obstacles described above, and likely impacted the adequacy of AW services. The need for better communication between healthcare providers and consumers, including individuals with communication disabilities (O’Halloran, Hickson, & Worrall, 2008), and parents of children with ASD (Levy et al., 2016; Locke et al., 2020), has been well-established. For example, family-centered and patient-centered communication has been associated with improved healthcare outcomes, satisfaction, treatment adherence, and self-management (Levinson, Lesser, & Epstein, 2010; Wanzer, Booth-Butterfield, & Gruber, 2004). One of the likely challenges to this communication is the limited time that direct care providers spend with families, Given that they receive limited training, direct care workers may not be adequately trained in how to effectively problem-solve with parents. Yet, most service coordinators in this study felt that parents had a lot of control over treatment planning decisions and that most parents actively participated as partners. Therefore, challenges are likely occurring during implementation, and not during preparation. Further, one of the themes that emerged from the qualitative analysis of positive parental feedback was parents’ gratitude for the support and dependability of providers and staff. One possible explanation for this discrepancy is that service coordinators reported on parental feedback, i.e., this may not have been an accurate reflection of how parents feel about direct care workers given that service coordinators focus on the preparation of the Plan of Care. Perhaps our findings would have been different if we probed direct care workers who are responsible for implementing the Plan of Care. Alternatively, providers may have an excellent rapport with some families, but struggle to communicate with others, i.e., there is variability in the quality of communication between AW providers and parents which was not captured in this survey. Given that parent-professional partnerships are important for service delivery, this is an area in need of further attention.

The need for optimizing communication between healthcare providers at the organizational level has also been documented (Bell et al., 2009; Knowles, 2009). For example, a scoping review of healthcare providers’ experiences with ASD found that collaboration between professionals facilitated service provision (Morris, Greenblatt, & Saini, 2019). Although the field of interprofessional collaboration is still emerging, the actual practice of interprofessional collaborative care is extremely difficult to implement in practice, especially when it involves multiple systems of care.

Most of the individuals with ASD being served by the agencies sampled in this study were adolescents and young adults and, given the estimated waitlist period of about eight years, children and families may go a long time without receiving AW services. It is possible that some of the acute needs of individuals and families could be pre-empted if services began earlier in the child’s life, given the importance of early intervention (Dawson et al., 2010; Hyman, Levy, & Myers, 2020; Reaven, Blakeley‐Smith, Culhane‐Shelburne, & Hepburn, 2012; Reichow, Barton, Boyd, & Hume, 2012). This might translate to more family satisfaction, as well as cost savings.

Study Strengths and Limitations

The strengths of this study include having directors and service coordinators as survey respondents, as these individuals are key stakeholders in the AW model. Perspectives of these individuals provide direct insight into daily obstacles faced within agencies serving the complex needs of families of individuals with ASD. Additionally, the inclusion of open-ended questions allowed these individuals to suggest candid recommendations without being restricted to a list. However, the study also had some limitations. Most notably, study funding did not permit sampling the perspective of direct care workers, direct care worker supervisors, and service recipients (Brookman-Frazee, Baker-Ericzén, Stadnick, & Taylor, 2012). Accordingly, we relied on service coordinators to report on parental feedback, which may have biased our findings. We also relied on service coordinators to recall information about clients, such as common mental and physical health concerns. This may have led to recall errors or biases, as service coordinators may differentially recall the most recent or severe concerns. Next, our sample was relatively small, and the findings may not generalize completely to the full underlying sample of directors and service coordinators working with the AW, especially in other states. Given the small sample size, we were also not able to explore quantitative predictors of service provision adequacy, such as agency size, training experience, and respondent demographics such as age, race, and education. Future iterations of this study should include more stakeholders to examine these associations, and incorporate focus groups or qualitative interviews to better enable researchers to explore challenges and recommendations by providers and families.

Recommendations and Conclusions

This study highlights important barriers to the provision of effective AW services, including a shortage of staff, inadequate staff training, case complexity, and poor communication. However, our preliminary findings indicate several noteworthy recommendations. First, reinforcement of the workforce is critical, through strategies such as higher salary and greater training. Second, organizational- and client-level interventions aimed at improving communication between providers and between providers and families are also necessary. Together these strategies may reduce the staff turnover and shortage, lighten the caseload, shorten the waitlist period, and ultimately, improve the effectiveness and responsiveness of AW services and allow the needs of individuals with ASD to be met.

The state might consider carrying out a pilot study to assess the feasibility, acceptability, and preliminary effectiveness of implementing the following recommendations: 1) in-depth didactic (e.g., onboarding and booster workshops) and applied training (e.g., coaching from more experienced direct care supervisors) to bolster the AW workforce’s readiness for addressing the heterogeneous and complex needs of AW service recipients, 2) smaller caseloads and higher provider pay to minimize burnout and turnover, and 3) web-based efforts to streamline and minimize administrative work that would maximize the AW workforce’s time providing direct services and coordination. If such a pilot program shows promise, future work could focus on gaining information on cost-effectiveness of this revised AW program. This would provide valuable information on the effectual allocation of AW funds needed to serve the needs of the ASD population adequately and efficiently.