Delays to Behavioral Therapy in Michigan for Children Diagnosed with Autism: A Summary of Needs Assessment Outcomes to Inform Public Policy Advocacy Initiatives

Abstract

Children diagnosed with autism spectrum disorder (ASD) are eligible to receive behavioral health services in Michigan, including those based on the principles of applied behavior analysis (ABA). Demand for these specific services far outpaces the number of qualified professionals in the state (Yingling et al., 2022), thus resulting in delayed access to a much-needed service. The purpose of our survey was twofold. First, we surveyed families throughout Michigan (N = 78) to identify the types of barriers encountered and the extent to which families of autistic individuals experience them when pursuing ABA services. Second, our survey assessed the needs of these families during service delays in an attempt to understand how to best support them during this time. Results indicated that 73% of children spent time on a waitlist, varying in duration from 1 month to over 1 year. Further, most caregivers indicated they were concerned about their children’s behavior while awaiting services and would have been interested in training to help them manage behavioral concerns and teach new skills to their children. We conclude by reviewing recommendations for addressing child and caregiver needs during this time and discussing implications for public policy advocacy initiatives.

Supplementary Information

The online version contains supplementary material available at 10.1007/s40617-023-00896-9.

The Autism and Developmental Disabilities Monitoring Network recently estimated that autism spectrum disorder (ASD) now affects 1 in 44 of the nation’s children (Maenner et al., 2021). ASD is a developmental disability that emerges early in life (APA, 2013), and those diagnosed are at an increased risk of (1) academically falling behind their same-age peers; (2) problem behavior emerging in place of functional communication; and (3) experiencing difficulty forming interpersonal relationships. When ASD goes undiagnosed and untreated (or there is a delay in diagnosis or treatment), individuals with substantial needs may be unable to access necessary support and interventions to develop critical skills (Reichow et al., 2018). The long-term impact of inadequate treatment typically results in restrictive placement, dependence on others, and limited choices, which may negatively affect an individual’s quality of life (Doehring et al., 2014; Dunlap et al., 2006; Emerson, 1990; Gardner & Moffat, 1990; Harris & Glasberg, 2007; Kahng et al., 2002; Kormann & Petronko, 2004; McAtee et al., 2004; National Institutes of Health, 2001; Taylor et al., 2011). As such, it is vital for autistic individuals1 to receive services as soon as possible.

Among the multitude of services that caregivers may choose to pursue, those based on the principles of applied behavior analysis (ABA) are an empirically supported treatment approach and have the potential to support the development of skills and improvement of the quality of life for autistic children (Reichow, 2012). Receiving ABA services as early as possible is a critical factor in predicting positive treatment outcomes because it helps to increase the child’s rate of learning, thus improving their overall developmental trajectory and narrowing the gap between autistic children and their peers (Eldevik et al., 2009; Granpeesheh et al., 2009b). The entry age into ABA services is linked to improved placement outcomes, such as earlier placement into more inclusive school settings (Harris & Handleman, 2000); therefore, securing ABA services as early as possible is critical for increasing the likelihood of positive outcomes for autistic children and their families.

However, families often face many barriers when pursuing a diagnosis and seeking ABA services that impede this process and ultimately delay the child from receiving the needed therapy. For instance, Vohra et al. (2013) identified that caregivers are more likely to report difficulty accessing services for their autistic child when compared to other caregivers pursuing services for children diagnosed with other developmental disorders, and/or mental health conditions. In particular, the researchers described issues related to the availability of services and appointment delays as several of the critical barriers to accessing services. These issues are primarily due to the demand for ABA services continuing to outpace the number and accessibility of qualified professionals who offer these services (i.e., board certified behavior analysts [BCBAs] and registered behavior technicians [RBTs]) across the country (Behavior Analyst Certification Board [BACB], 2022).

Although the field of ABA has gained an average of ~6,000 new BCBAs and ~17,000 RBTs per year in the last 5 years (2016–2021), the BACB recently reported that the demand for BCBAs has more than doubled in recent years (BACB, 2022). For instance, Yingling et al. (2022) found that whereas the number of BCBAs increased nationwide by more than 21% per year, the number of autistic children also continued to increase by 7% yearly. Although this disproportionate gain is encouraging, Yingling et al.’s results suggested that even after significant growth in certified practitioners between July 1, 2018 (27,320) and July 1, 2021 (45,103), county-level distribution of BCBAs as a function of the number of autistic children remained uneven and demand for ABA services continues to outpace these professionals' current availability (BACB, 2022). As a result, approximately 65% of counties had 25 or more autistic children per BCBA, suggesting low access across the country. This 25:1 “autistic children-to-BCBA” ratio is concerning given that the Council of Autism Service Providers (CASP) recommends a caseload for BCBAs of either (1) 10–15 clients for focused ABA treatment and 6–12 clients for comprehensive treatment without the support of an assistant; or (2) 16–24 clients for focused ABA treatment and 12–16 clients for comprehensive treatment with the support of an assistant (CASP, 2020). Overall, current reports of access to BCBAs do not reflect best-practice recommendations for caseload management. Factors influencing availability are likely related to state-specific healthcare insurance mandates (McBain et al., 2020) and the state per capita supply of BCBAs (Zhang & Cummings, 2020).

In Michigan, for example, there are approximately 185 ABA providers in the state (Autism Alliance of Michigan, n.d.), and only 1,710 BCBAs and 2,080 RBTs (BACB, n.d.) to serve approximately 42,208–61,202 autistic children and adolescents (based on applying a prevalence rate of 2.0–2.9 to children aged 3–17 in Michigan; data extracted from www.worldpopulationreview.com as of July 2022; World Population Review, 2022a, b). This estimated 24.7:1 “autistic children-to-BCBA” ratio in Michigan is nearly identical to the country-wide average reported by Yingling et al. (2022) and suggests that access to BCBAs in Michigan does not reflect best-practice recommendations for caseload management and significant delays to ABA services for autistic children likely exist. In addition, Drahota et al. (2020) found evidence to suggest that access to available providers in Michigan was significantly influenced by population distribution, socioeconomic status, urbanicity, and immobility resulting in uneven spatial distribution of service providers throughout the state, creating “service deserts” in disadvantaged areas, and contributing further to service delays.

When demand for ABA services is high, families are unlikely to find an available service provider and are likely placed on a waitlist before receiving ABA services (Bekker, 2018; Bump, 2017; Johnson, 2018; Lofton, 2016; Mello et al., 2016; Ovaska-Few, 2018; Yingling & Bell, 2019; Yingling et al., 2017, 2019). That is, even when an ABA service provider is identified and determined to be a good fit for the child’s therapeutic goals, there is a high likelihood that the service provider is already at capacity, and the family will need to wait before they can be enrolled to receive services, thus affecting their health, academic trajectory, and long-term success. An extensive waitlist period can also have a negative effect on caregivers, given that attaining services and support for one’s child is a top concern for caregivers with an autistic child (Tehee et al., 2008). Because the time spent on a waitlist often occurs during a crucial period for the child’s development and is notably a stressful time for their caregivers, it is important to improve access to ABA services so that positive developmental trajectories can be achieved and family well-being can be supported.

Given that the primary issue is that the number of professionals does not adequately meet the service demand, the straightforward solution is to increase the number of BCBAs and RBTs throughout the state to expand ABA service provision. Although the number of BCBAs and RBTs has continued to grow steadily in Michigan over the past 5 years (BACB, n.d.; Yingling et al., 2022), it will likely take years before an appropriate ratio and stability in service delivery are achieved. As an alternative, a potential interim solution may be to offer families resources while on the waitlist. Offering various parent training opportunities and ongoing support to caregivers during this time may provide the skills needed to manage their child’s behavior and maintain skills. Improving access to these resources may also set the child and their families up for success when they eventually receive services, thus increasing the likelihood of satisfactory long-term outcomes. Thus, public policy advocacy initiatives are needed to (1) increase awareness of this service delay issue and (2) support short- and long-term solutions to address delays to behavioral services during this critical period of time.

Despite the increase in demand for ABA service delivery and the common occurrence of families being waitlisted, no data are available to indicate how often (and for how long) families experience a waitlist before receiving ABA services. Furthermore, although it intuitively makes sense to offer resources to families while they are on a waitlist as an interim solution, it is presumptuous to assume that one can provide effective training and support without first understanding the families’ specific needs during this time, and the barriers a family may face that can potentially interfere with accessing these resources. The purpose of this article is to (1) propose a method for gathering data and quantifying these issues; (2) present preliminary data to identify the prevalence of families that spend time on a waitlist and the duration of time experienced during this delay to ABA services; (3) assess caregivers’ needs, interest in receiving support, and preference for resources while on a waitlist; (4) offer practice recommendations to address caregiver concerns while they await ABA services; and (5) discuss potential strategies for using needs assessment outcome data to advocate for public policy initiatives that will address this concern.

Method

Participants

Participants who volunteered to enroll in this study and provided informed consent were asked to complete an online survey. Eligibility criteria to participate in the study included: (1) being over the age of 18; (2) having current residence in Michigan; and (3) being a caregiver of a child diagnosed with ASD. Because the survey aimed to assess the state of behavioral service provision in Michigan, secondary inclusion criteria for questions related to behavioral services included: (1) previously pursuing or (2) planning to pursue ABA services for their child. An exclusion criterion was not included if participants’ children had not received ABA services so as not to exclude caregivers and their children who were currently waiting to receive services. Participants did not receive compensation for participation in the study.

Materials

The online survey presented the participant with a series of questions related to (1) participant eligibility; (2) participant demographics; (3) whether their child was placed on a waitlist before receiving ABA services; (4) the approximate duration of time spent on this waitlist; (5) the participant’s primary concerns while their child was awaiting services; (6) the participant’s needs at this time; and (7) the potential barriers that might interfere with accessing services (see survey questions in Appendix A).

The finalized survey consisted of 92 closed-ended and 19 open-ended questions. Of the 92 closed-ended questions, there were 12 yes/no questions, 27 multiple-choice questions in which only one answer could be selected, 20 multiple-choice questions in which more than one answer could be selected, and 33 presented in a matrix format. Of the 19 open-ended questions, 12 were short-answer questions asking for specification (i.e., “please specify”), and 7 were open-ended questions in which further descriptions were requested. At a minimum, the survey required fewer than 60 s to complete (i.e., if they did not meet initial eligibility) and could require upwards of 15–20 min to complete all relevant questions within the survey. The survey was developed and disseminated through REDCap, a Health Insurance Portability and Accountability Act of 1996 compliant, secure online platform for managing online databases and surveys.

Procedures

Survey Development

The Autism Services in Michigan Survey (Appendix A) was created by the authors, who developed a draft survey using their clinical experience working with this population to design questions that would produce data needed to (1) determine the prevalence of families who spend time on a waitlist before receiving ABA services; (2) assess families’ motivation for support; and (3) identify specific needs while families awaited services. Several other professionals (e.g., a doctoral level statistician, clinical director at an ABA service provider) who either (1) had experience conducting survey research or working with caregivers who had an autistic child; (2) were the primary caregiver for a child with special needs; or (3) some combination of these characteristics, reviewed and provided feedback on the content and social validity of the survey questions. The feedback from these professionals improved the questions' clarity, format, and organization. Once feedback from the other professionals was incorporated, this draft survey was disseminated to eight caregivers of autistic children who were recruited to assess the clarity and content of the survey.

Within the survey, multiple opportunities were provided for participants (i.e., caregivers of autistic children) to provide feedback on the content as they completed the survey. In particular, questions were posed that requested feedback on the following: (1) clarity of questions; (2) whether additional questions should be added; (3) whether questions should be deleted; and (4) whether they had any additional feedback. These feedback questions were in the form of a 5-point Likert scale (ranging from “very unclear” to “very clear”), yes/no questions, and short answer questions. At the end of the survey, the participants were presented with several social validity questions using a 3-point Likert scale (ranging from “unsatisfied” to “satisfied”) that asked how they felt about the survey’s (1) length, (2) content, (3) thoroughness, and (4) overall experience. All questions requesting feedback were optional. After the survey window closed, the feedback on the draft survey was analyzed, and any survey question(s) or response option(s) flagged as confusing, not organized optimally, or missing important details were modified for the finalized survey.

Survey Dissemination

Dissemination of the survey was approved by a collegiate institutional review board. Individuals were recruited to participate in the study statewide by disseminating an invitation flier across several outlets. These outlets included: (1) a nonprofit autism association’s monthly newsletter; (2) recruitment via social media pages; (3) direct invite from clinical directors of ABA providers in Michigan; (4) posting an invitation on listservs for caregivers of autistic individuals; and (5) word of mouth (e.g., individuals who reshare posts on social media). The survey was open for 4 months (early January 2021 to early May 2021).

Data Collection and Analysis

When the survey was completed or when the participant closed the survey window, all participant responses were aggregated in REDCap and summarized as the following outcome measures: (1) summary of demographic information; (2) summary of referral sources to behavioral therapy; (3) estimated prevalence of children who were on a waitlist before receiving behavioral therapy; (4) duration of time spent on a waitlist(s) for services; (5) major behavioral concerns of the child; (6) caregiver needs; (7) caregiver interests in receiving supports; and (8) potential barriers for caregivers in receiving supports. Due to the nature of the survey, not all caregivers were given the opportunity to answer all questions if they did not apply to them (i.e., skip logic); hence, some questions had more responses than others.

R and RStudio were used to analyze the survey responses (R Core Team, 2020; RStudio Team, 2020). The “psych” package within RStudio generated a descriptive data summary, including mean, standard deviation, median, range, minimum, and maximum for relevant questions. In general, variables potentially related to waitlist durations (e.g., various demographic variables, level of child concern, reported barriers) were analyzed to determine if there were any interesting and significant differences between demographic groups.

Results

Participants

Seventy-eight residents of Michigan consented to participate in this study. Of the 78 caregivers who consented to participate, 62 met the initial inclusion criteria (resident of Michigan; primary caregiver of an autistic child) and participated in the first half of the survey. Of these 62 caregivers, 48 indicated they have previously pursued or were currently pursuing ABA services for their child (with at least 25 eventually receiving ABA services by the time of survey completion), meeting the secondary inclusion criteria for the second half of the survey. Of note, as caregivers progressed through the survey, if questions were irrelevant, participants were either excluded or not required to answer, resulting in a varied number of responses to survey questions across sections.

Demographic Information

Demographic information for participating caregivers and their children who met the initial inclusion criteria (N = 62) is summarized in Table 1. Of note, for all demographic information questions, caregivers were provided multiple-choice questions in which one answer could be selected; however, they were provided the opportunity to write in their own information when appropriate, such as if they were to speak multiple primary languages in the home. Concerning the caregivers surveyed, the vast majority were biological parents (n = 59, 95.2%) of the autistic children, white (n = 53, 85.5%), and spoke English as their primary language (n = 61, 98.4%). The range of reported household income of the caregivers varied from less than $25,000 to $150,000 or more, with the median household income being between $50,000 and $74,999. Over half of the caregivers lived in a city (53.2%), with the rest identified as living in either a metropolitan area (24.2%) or a rural town (22.6%). Concerning the caregiver’s children, the majority were identified as being male (n = 46, 74.2%), white (n = 53, 83.9%), had additional diagnoses other than ASD (n = 33, 53.2%), and were born between 2019 and 2008 (Mdn = 2013), or approximately 2–13 years old, with a median age of 8 years old (at the time the survey was conducted).

Table 1.

Participant demographic characteristics (N = 62)

Variable	n	%
Caregiver
Relationship with Child
Biological Parent	59	95.2
Adoptive Parent	1	1.6
Relative	1	1.6
Other	1	1.6
Missing	0	0
Ethnicity
Asian/Pacific Islander	1	1.6
Black or African American	2	3.2
Hispanic or Latino	2	3.2
Native American or American Indian	0	0
White	53	85.5
Other	1	1.6
Prefer Not to Answer	2	3.2
Missing	1	1.6
Primary Language Spoken in Home
English	61	98.4
Spanish	0	0
Arabic	0	0
German	0	0
Chinese	0	0
Other	1	1.6
Missing	0	0
Annual Household Income
< $25,000	7	11.3
$25,000–$34,999	5	8.1
$35,000–$49,999	6	9.7
$50,000–$74,999	10	16.1
$75,000–$99,999	9	14.5
$100,000–$149,999	7	11.3
> $150,000	10	16.1
Prefer Not to Answer	6	9.7
Missing	2	3.2
Number of People Who Live in Household
Two	2	3.2
Three	23	37.1
Four	16	25.8
Five	10	16.1
Six+	10	16.1
Missing	1	1.6
Home Setting
City	33	53.2
Rural Town	14	22.6
Metropolitan Area	15	24.2
Missing	0	0
Autistic Child
Sex
Male	46	74.2
Female	16	25.8
Intersex	0	0
Other	0	0
Missing	0	0
Ethnicity
Asian/Pacific Islander	1	1.6
Black or African American	3	4.8
Hispanic or Latino	2	3.2
Native American or American Indian	0	0
White	52	83.9
Other	2	3.2
Prefer Not to Answer	2	3.2
Missing	0	0
Additional Diagnoses Other Than ASD
Yes	33	53.2
No	29	46.8
Missing	0	0
Year Born
Prior to 1994	2	3.2
1995–1999	0	0
2000–2004	0	0
2005–2009	10	16.1
2010–2014	24	38.7
2015–2019	25	40.3
2020–Present	0	0
Missing	1	1.6
Year Diagnosed with ASD
Prior to 1994	0	0
1995–1999	1	1.6
2000–2004	0	0
2005–2009	0	0
2010–2014	18	29.0
2015–2019	36	58.1
2020–Present	6	9.7
Missing	1	1.6

ASD = autism spectrum disorder

Referral Sources

To understand how caregivers learned about ABA services, we inquired whether (1) caregivers were made aware of behavioral services at the time of diagnosis and (2) who referred them to services. Of the caregivers who met the inclusion criteria for referral sources (n = 56), 76.8% (n = 43) were made aware of ABA services at the time of their child’s diagnosis. Table 2 reveals caregivers’ referral sources for ABA services (of note, respondents could select more than one referral source if appropriate). Nearly half reported learning about such services from an Autism Evaluation Center (i.e., an approved autism evaluation center required by insurance to obtain diagnosis and services; n = 20; 46.5%), followed by health-care professionals (n = 14; 32.5%). Likewise, caregivers most frequently identified Autism Evaluation Centers or healthcare professionals as the main referral sources for additional services (e.g., respite care, vitamins, medical treatments, parent workshops, parent training, cognitive behavior therapy, and speech-language therapy). Early On Michigan was the main source that made caregivers aware of social skills training, occupational therapy, and education/school-based services.

Table 2.

Referral sources for ABA therapy (N = 43)

Source	n	%
Autism Evaluation Center	20	46.5
Healthcare Professional	14	32.5
Early On Michigan	12	27.9
Own Research (e.g., Internet, Books)	9	20.9
Friend	5	11.6
Autism Alliance of Michigan	2	4.7
Family	0	0
Don’t Remember	0	0
Missing	2	4.7

The sum of the percentages do not add to 100 because caregivers could select more than one response

Waitlist Prevalence and Duration

Of the caregivers who indicated they either plan to or have pursued ABA services for their child (N = 48), 72.9% (n = 35) reported they had been on a waitlist for services. Of these 35 caregivers whose children spent time on a waitlist, 51.4% (n = 18) reported simultaneously spending time on multiple waitlists. Table 3 presents the length of time children spent on waitlists for behavioral services based on how many waitlists the child was concurrently on. Regardless of the number of waitlists the child was on, the mean time spent on a waitlist for services was 5.66 months (SD = 3.85). Of the individuals who indicated their child had received services after being on at least one waitlist (n = 25), the average time spent on the waitlist(s) was 4.84 months (SD = 3.37). Of individuals who indicated that their child has not started receiving services and is still awaiting services (n = 7), the average time spent on the waitlist(s) was several months greater than those who have begun receiving services (M = 8.57 months; SD = 4.28). The mean duration of time spent on a waitlist was greater for those who live in a city (M = 6.33; SD = 3.76) than those who live in a rural town (M = 4.86; SD = 3.76) and metropolitan area (M = 5.20; SD = 3.61), albeit not significantly. No statistically significant differences were found when comparing the duration of time spent on a waitlist(s) and the (1) number of waitlists (Table 3) and (2) type of setting.

Table 3.

Months spent on waitlist (Number of waitlists; N = 35)

Number of Waitlists	n	M	SD	Mdn	Range
1	17	5.33	4.05	3	1–12+
2	9	3.38	4.5	4.5	3–12
3	4	5.75	5.25	4.5	1–12+
4	3	8.00	4.58	9	3–12
5+	2	4.50	2.12	4.5	3–6
Total	35	5.66	3.85

M and SD are used to represent mean and standard deviation, respectively. M, SD, median, and range present the duration in months. “12+” indicates greater than 12 months

Behavioral Concerns

Common behavioral concerns associated with an ASD diagnosis include deficits in (1) appropriate communication and language, (2) social skills, (3) daily living skills, and (4) problem behavior (APA, 2013). Figure 1 depicts respondents reporting common behavioral concerns and their severity. Caregivers primarily reported the occurrence of these major behavioral domains as a concern (either major or slight) while on a waitlist for behavioral services (range = 85.3%–97.1% of caregivers). In particular, caregivers identified appropriate communication/language as their biggest behavioral concern (82.4%), followed by social skills (67.6%), daily living skills (58.8%), and challenging behavior (50%). When asked about the severity and frequency of these behavioral concerns, approximately 83% (n = 24) of caregivers indicated the behavior was either severe or medium severity (the behavior occurred daily to weekly or resulted in injury or a minor injury to self or others).

Fig. 1.

Behavioral concerns while waiting for services (N = 34). Note. Behavioral concerns depicted in the figure include appropriate communication/language, social skills, daily living skills, and problem behavior. The severity of all behaviors was assessed and depicted as high, medium, or low severity

Based on the duration of time that families were waiting for services, we asked caregivers to report whether their child’s behavioral concerns got worse, stayed the same, or improved while on the waitlist (see Fig. 2). Most respondents indicated that their child’s behavioral concerns either stayed the same (n = 18; 56.2%) or worsened (n = 11; 34.4%) while awaiting services.

Fig. 2.

Severity of behavior while waiting for services

Caregiver Needs

Caregivers (N = 31) indicated several needs that would be necessary to best support their autistic child (Fig. 3). Caregivers identified their top needs as (1) strategies for teaching and maintaining a child’s skills (n = 26; 83.9%); (2) support for teaching and maintaining a child’s daily living skills (n = 25; 80.6%); and (3) skills for managing a child’s problem behavior (n = 22; 71%). Support/services for the caregiver’s mental health (n = 15; 48.4%), support in advocating for the child’s needs (n = 15; 48.4%), and respite care (n = 13; 41.9%) were also among the needs identified by caregivers while they are on a waitlist.

Fig. 3.

Caregiver needs while waiting for services. Note: ADLs = Activities of daily living

Caregiver Interest and Preferences for Supports

All caregivers (N = 30) indicated they would be interested in learning more about support opportunities; however, their preferences varied across the caregivers. In particular, all caregivers indicated they were interested in training to help them gain skills for addressing their child’s behavioral concerns while on a waitlist for behavioral services. Concerning how this training would be conducted (Fig. 4), caregivers indicated that they would prefer 1-on-1 with an instructor (n = 18; 62.1%), where the instructor can model the skill live (n = 14; 51.9%), practice it with them (n = 12; 55.2%), and provide vocal feedback (n = 13; 48.1%) in the moment (n = 19; 70.4%).

Fig. 4.

Preferred modality of caregiver trainings

Given the caregivers’ responsibilities and schedules, only one caregiver (3.4%) responded that they were very likely to attend this training, whereas 21 caregivers (72.5%) would be somewhat likely to attend, six caregivers (20.7%) were somewhat unlikely to attend, and one caregiver was unlikely to attend (3.4%). Of these caregivers, the majority preferred that the training sessions last 1 hr (n = 18; 62.1%), whereas five caregivers (17.2%) preferred the training session last less than 1 hr, five caregivers (13.8%) preferred the training session last 2 hr, two caregivers (6.9%) preferred the training session last 3 hr, and no caregivers preferred the training session last more than 3 hr. Pertaining to the number of hours caregivers indicated they would be interested in meeting for training sessions per week, 1 caregiver (3.4%) indicated they would prefer meeting for less than 1 hr per week, 10 caregivers (34.5%) indicated they would prefer meeting for 1 hr per week, 12 caregivers (41.4%) indicated they would prefer meeting for 2 hr per week, 5 caregivers (13.8%) indicated they would prefer meeting for 3 hr per week, and 2 caregivers (6.9%) indicated they would prefer meeting for more than 3 hr per week.

Potential Barriers to Receiving Supports

Data were collected on barriers that might prevent the caregivers (N = 27) from attending the training on supports they could use or access while on the waitlist(s) (Fig. 5). The most commonly identified barriers included lack of time to attend (n = 20; 74.1%), distance to services (n = 11; 40.7%), lack of resources or accessibility (e.g., reliable transportation, internet/communication access; n = 7; 25.9%), already committed to too many other therapies/activities (n = 7; 25.9%), and lack of childcare (n = 6; 22.2%). A small percentage of caregivers also identified that the training could require too much work/commitment to attend (n = 2; 7.4%) and that they may not feel comfortable having people in their homes to provide the training (n = 1; 3.7%). On the other hand, no caregivers identified the following as barriers to attendance: already receiving services at school, lack of therapeutic collaboration or alignment, and not being sure it would be helpful.

Fig. 5.

Caregiver barriers to receiving supports while waiting for services

Discussion of Needs Assessment Outcomes and Implications for Public Policy Advocacy Initiatives

We surveyed families throughout Michigan to identify the types of barriers encountered and the extent to which families of autistic children experience them when pursuing ABA services. Further, we assessed the needs of these families during service delays in an attempt to understand how to best support them during this time. The survey results suggest that nearly 75% of all respondents had been or were currently on a waitlist for behavioral services. To the best of our knowledge, this study offers the first preliminary insights into the current state of waitlists for ABA services and the needs of caregivers while awaiting these services for their autistic children, specifically in Michigan. In addition, the data obtained in the study, although preliminary, are the first to confirm that waitlists are not an occasional occurrence when attempting to access behavioral services but rather are the norm. Our survey results and other statistics on access to services highlight the need for public policy advocacy initiatives to increase access to these services and resources and support for families statewide and nationwide. We will specifically discuss the implications of these results in the context of how our field can begin to address the gap between diagnosis and receiving ABA services to adequately provide support and relief to families, which may have a meaningful influence on the short- and long-term outcomes for all of those affected by an autism diagnosis (e.g., the child, their family, behavioral service providers, local educational setting, insurance companies).

Overall, our survey results indicated that participants' average time on a waitlist for behavioral services was nearly 6 months. Caregivers also reported a worsening or stagnation in their child’s problem behavior the longer they spent on a waitlist. In particular, families on a waitlist for 4 months or more were twice as likely to report that behavioral concerns worsened compared to those on a waitlist for 3 months or fewer (Fig. 2). This finding is important because, as indicated above, the average time families stayed on a waitlist was nearly 6 months, meaning that, on average, these cases are at a greater risk of behavioral concerns worsening during the waitlist period before receiving behavioral services. This finding is not surprising, because previous studies have suggested that with an increased delay to effective intervention, the greater likelihood that problem behavior is inadvertently reinforced and thus persists at equal or worsening severity and rates (e.g., Lloyd & Kennedy, 2014). The worsening or stagnation of behavior over time is a tremendous concern as problem behavior can persist or escalate to the point where it could endanger the child, those around them, and the environment if not treated. In addition, as the severity of problem behavior increases while on the waitlist, ABA clinics or settings may not be equipped to treat the new or increasingly severe problem behavior and, therefore, may further delay access to appropriate services and serve to increase the burden on families and payers as a more intensive intervention would be necessary when they are eventually admitted for services.

In addition to the prevalence and duration of time spent on a waitlist, our findings also provide insight into caregiver needs while their children were on a waitlist. In general, caregivers indicated their highest needs were related to teaching/maintaining skills and managing/reducing problem behavior for their children. Caregivers reported their mental health and advocacy skills as less of a concern, possibly due to the more urgent child-specific needs. Caregivers reported being concerned about several areas of their child’s development, with many indicating major concerns across more than one domain (e.g., appropriate communication and language, social skills, daily living skills, and problem behavior).

Given that the delay in ABA services greatly affects familial and parental stress, as well as the developmental trajectory and safety of the child, advocacy efforts are imperative for this public health issue. While the field of ABA is actively working to increase the census of clinicians, public policy advocacy initiatives can also assist in improving access to services and resources for those awaiting behavioral services across the state and country. Advocacy with health-care professionals, such as collaborating with pediatricians to assist with early education (i.e., before worsening of skill deficits or other behavioral concerns) on behavior management and promoting communication and skill acquisition, can assist in providing families with necessary support and education, decreasing parental stress, and potentially minimizing (or even eliminating) the need for behavioral services later. In addition, advocacy for insurance change can be beneficial in expanding caregiver education for families awaiting behavioral services. In particular, adding parent training codes to support families on the waitlist could provide caregivers with necessary training and education on behavior analytic skills to assist in managing their child’s challenging behavior and promoting or maintaining skill acquisition (e.g., Dai et al., 2021; Hassan et al., 2018).

Further, insurance providers could put a policy in place that in order for families to be eligible to enroll in behavioral services for their child, they must complete an approved caregiver training course to increase the likelihood of caregiver involvement and long-term treatment adherence. These trainings could be supported by state-funding and made freely available (or available at a reduced price) so that all families could access them, ideally while their child awaits behavioral services. In addition, if insurance providers require these trainings, they could cover them so there is little to no out-of-pocket expense to the caregiver (e.g., only a co-pay required). Advocating for insurance change will also eliminate the need for outside funding to provide these supports to families. In addition to these specific advocacy areas, increased access to specialty care services can decrease waitlist times for general behavioral services. In particular, individuals displaying severe problem behavior receiving treatment from early intervention services often require additional resources, such as increased clinical time and space (e.g., additional staff, specialty rooms, taking more than one client opening; Briggs & Greer, 2021). Therefore, increased resources and allocation of funds for this specific population (e.g., specialty services and facilities) can allow for more client openings within behavior clinics, such as EIBI centers, and therefore relieve an increased number of individuals off the waitlist. However, despite most children requiring services to address various behavioral challenges, surprisingly few behavioral providers are qualified to or feel comfortable assessing and treating it. Therefore, advocating for ongoing professional training so that behavior analysts continue to gain skills and establish competence in assessing and treating problem behavior and pursuing differential reimbursement rates for treating children with problem behavior may result in professionals who are more likely to admit children who engage in problem behavior off of the waitlist to receive much needed behavioral services.

Advocating for these resources and policy changes is incredibly important as caregivers indicated that they would seek alternative methods of treatment that are not evidence-based due to their delay in access to behavior analytic services. Previous studies have found that complementary and alternative medical treatments have been used with 28% to 95% of autistic children despite little evidence supporting the effectiveness of these alternative treatments (Höfer et al., 2017). Not only are these alternative treatments often ineffective, but they also consume valuable resources (e.g., caregivers’ money and time; Davis, 2010) and can be harmful in some cases (e.g., chelation therapy has been found to cause several adverse effects, including death; James et al., 2015). All individuals have the right to effective behavioral treatment and intervention (Van Houten et al., 1988), and although ABA providers do not deny services, their inability to meet the present demand results in delayed access to effective treatment. Therefore, advocacy for policy change that increases access to these interventions is critical. In particular, it may be advantageous for the state to incentivize providers to offer focused behavioral interventions, especially for clients who may be more at risk for regression or behavioral escalation. For instance, White et al. (2023) suggested a model of care that delivered on-demand telehealth support to caregivers of autistic children across various social and behavioral concerns. Using this framework, caregivers could receive focused care consisting of advice, guidance, and coaching on addressing particular issues that may arise while awaiting behavioral services. Given that policy change takes a significant amount of time, we can offer relief in the interim by providing caregiver training and education (e.g., Bearss et al., 2015) and access to resources that offer communities of support.

All caregivers who met the inclusion criteria indicated they would be interested in receiving more information about opportunities for caregiver training while on a waitlist. Training curricula could focus on providing caregivers the skills needed to effectively manage their child’s problem behavior and teach (or maintain) adaptive skills, which might serve as a stop-gap while awaiting more intensive behavioral services. In addition, educating parents on the importance of caregiver-implemented interventions may increase motivation for future involvement, perhaps by explaining that caregiver-implemented interventions have been demonstrated to increase children’s skills, decrease problem behavior, increase parental positive affect, and decrease parental stress (Brookman-Frazee et al., 2009). Further, educating parents on the potential adverse effects of alternative treatments could curb their pursuit of these approaches, thus conserving the families' valuable resources (e.g., time and money) and preventing harmful outcomes. Although this would likely require funding to develop and support those offering the training, it could be argued that investing in caregiver training early on may result in better short- and long-term treatment outcomes, thus reducing the overall intensity, duration, and expense of services required over time. For instance, in addition to insurance supporting caregiver training for families awaiting behavioral services to promote caregiver education and overall involvement, ABA clinics could enact a policy that requires enrollment in caregiver training while their child awaits more intensive behavioral services to ensure families are receiving the training, education, and support needed during time spent on the waitlist to increase the likelihood of positive treatment outcomes.

Although most caregivers indicated an interest in training while awaiting services, the majority also indicated that they would face barriers that could prevent them from attending the training. Thus, a policy solution might be for organizations to provide additional resources such as subsidized childcare or make other variations of caregiver training freely available, such as utilizing a video conference platform or in-home sessions to mitigate potential barriers and meet families' unique needs. Offering additional resources like these might increase the likelihood of services reaching those most affected by documented disparities in community providers (e.g., those living in urban neighborhoods), thus improving access to services regardless of economic or geographic disadvantage; Drahota et al., 2020).

The results of this survey present several clinical implications, highlighting the importance of timely access to behavioral intervention. Research has indicated robust gains in skill acquisition and problem behavior reduction occur when an individual begins intervention before the age of 5 (Granpeesheh et al., 2009a) and that problem behavior is more likely to persist or even increase in severity without intervention (Murphy et al., 2005). Therefore, the results presented herein provide measures of a well-known barrier that influences the time between diagnosis and intervention, interferes with timely access to behavioral services, and places an enormous burden on caregivers. Our discussion highlights the critical need for advocacy to increase these families' access to behavioral services and other relevant resources. Although policy and insurance change will take time, we have also discussed several additional ways (e.g., training curriculum, increased education on behavior analytic procedures, childcare) our field may be able to provide families with the necessary support and relief while on a waitlist.

Although useful information can be gleaned from the outcomes of this study, these data are recommendations that ought to be considered in the context of the following limitations. The survey results included a small sample of participants relative to the number of children currently receiving services in the state, which limited opportunities to identify statistically significant differences that may account for differences in waitlist duration. The Michigan Department of Health and Human Services (MDHHS) reported that 6,771 youth were approved to receive Michigan Medicaid ABA services (MDHHS, 2019). Therefore, one could assume that the number of individuals awaiting services within the state of Michigan is significantly higher when compared to the number of participants captured in our survey. It is possible that several factors affected the number of participants who engaged in this survey. First, our sample was limited in representing the state-wide population and did not extend across the entire population of the United States. Second, the survey participants' recruitment methods were limited in scope (e.g., social media connected to the authors and a nonprofit organization). Third, no incentives were offered for the completion of the survey. Given these limitations, this survey and its findings are best viewed as preliminary and perhaps represent some initial pilot data that can be used to inform the development of future studies. According to the most recent American Community Survey, demographics within Michigan show that 77% are white, 14% Black, 3% Asian, and 1% other. Given the majority of participants in our study identified as white, middle-class families (Table 1), our sample does not accurately represent the ethnic and economic diversity within Michigan, and future research should focus on replicating and extending our methods across larger, more diverse samples. Improving recruitment might be accomplished by employing additional recruitment strategies, like partnering with larger agencies to assist with dissemination (e.g., through special education programs or the state department of education; Chen et al., 2019; Dimian et al., 2021) and offering incentives for completing the survey (Singer & Ye, 2012).

We believe that understanding behavioral service provision across the country and identifying limitations to the current system is critical for developing support systems and training curricula to address the unique needs of families in a more timely and effective manner. We hope that our survey methods are adopted by other researchers to generate large-scale replication and extension both within and across other states. This may be feasibly accomplished by (1) replicating our survey with a larger sample and extending it by disseminating and recruiting responses from caregivers across new states; (2) adopting our suggestions for improving dissemination and recruitment described above (e.g., offering incentives for completion); and (3) applying for grants (e.g., through internal university funding mechanisms, accessing state-level funds, partnering with insurance companies or other organizations who may sponsor the project) to fund incentives for survey completion, to support efforts to advertise the survey and support the time required by a researcher to develop and manage the survey and analyze the outcomes on a large scale.

Supplementary Information

Below is the link to the electronic supplementary material.

Data Availability

Data are available upon reasonable request.

Declarations

Ethical Approval

This study was approved by the institutional review board of our respective university. All procedures performed in this study involving human participants were in accordance with ethical standards described by the 1964 Helsinki Declaration.

Informed Consent

Informed consent was obtained from all individual participants involved in this study. No identifiable information about participants is included in this article.

Conflicts of Interest

The authors declare that they have no conflicts of interest. The authors have no relevant financial or nonfinancial interests to disclose.