The Public Policy Advocacy Actions Checklist: Success Stories from Three States

Abstract

Public policy advocacy is crucial to ensure equitable access for all those seeking applied behavior analysis (ABA) services. Based on their experiences engaging in state-level public policy advocacy, the authors created a Public Policy Advocacy Actions Checklist that summarizes specific strategies they found to be successful with a variety of public policy issues relevant to ABA. Although this article focuses on advocacy efforts related to Medicaid reimbursement rates and Medicaid policies for ABA service provision, the strategies presented have also been used to advocate for coverage of telehealth ABA services, licensure for behavior analysts, and mandates for commercial insurance to cover ABA and/or autism intervention. The State of Wisconsin is used to illustrate implementation of the Public Policy Advocacy Actions Checklist, and the states of Arizona and Massachusetts are presented as additional examples of successful advocacy efforts using these strategies. This article walks behavior analysts through the process of identifying the local challenges and opportunities, developing advocacy goals, implementing an action plan, collecting data, recruiting support from the community, and influencing policy makers to implement favorable policy changes. The authors present additional resources to support new behavior analyst advocates including links to free advocacy toolkits, tips on selecting a lobbyist, recommendations for meetings with policy makers, a sample budget request, and two examples of “call to action” communications encouraging members of the community to contact their representatives regarding a specific issue. Finally, the successful advocacy outcomes and remaining opportunities for advocacy in each of these three states are discussed.

Supplementary Information

The online version contains supplementary material available at 10.1007/s40617-023-00874-1.

Background

Healthcare providers can play an essential role in influencing healthcare policy as it evolves over time (Christopher et al., 2015). Giving providers the tools to address issues that negatively affect their clients is key to promoting equitable health outcomes (Andermann, 2016). In fact, some professional nursing organizations view public policy advocacy as critical enough to be considered an ethical obligation (Jurns, 2019). The National Association of Social Workers Code of Ethics includes standard 6.04 Social and Political Action, which describes the ethical responsibility of social workers to advocate for equality in access to resources and opportunities for all people (NASW, 2021). When behavior analysts observe systemic variables negatively affecting their clients, there can be a strong motivation to advocate on behalf of their clients and attempt to change such environmental barriers. However, behavior analysts typically receive little to no training in effective public policy advocacy. This article lays out challenges faced by behavior analysts in three states and the strategies undertaken by ABA providers and trade organizations to improve conditions in the communities they serve and is meant to be a resource for other behavior analysts seeking to do the same.

It is important to note that this article focuses on public policy advocacy efforts in the United States, with a particular emphasis on increasing state health plan (Medicaid) reimbursement rates. The authors expect that many of the strategies described in this article could be applied in other states across the United States and in other countries around the world. In an effort to support readers in identifying similarities and differences between their own local public policy efforts and the examples provided in this article, a brief overview of ABA funding in the United States and the structure of state governments will be presented.

ABA Funding in the United States

In the United States, ABA services are most often funded by the recipient’s healthcare policy within the medical system. Full-time employees often have access to commercial insurance policies provided by their employer, who subsidizes the cost of the healthcare policy as a benefit to the employee. For example, a child may have a commercial insurance policy as part of their parent’s family insurance policy, accessible through the parent’s employer. As an alternative, a client (child or adult) may have a healthcare insurance policy provided through government programs, such as Medicaid, which they may qualify for based on financial need or disability status. These state healthcare programs are typically managed at the state level but receive funding from both the state and federal governments.

In some cases, a client has both commercial insurance and state health insurance, in which case the commercial insurance is considered the primary payor, and the secondary state health insurance provides funding for medical services not covered by the primary payor. In addition, ABA services may be offered in school and funded by the educational system or by the state Medicaid program. Clients may also privately pay for ABA services out of pocket, but due to the high cost of ABA services, this is not an option for most families. It is noteworthy that in many other countries, ABA services are considered part of the educational system, rather than the medical system, and thus public policy efforts would need to target the educational system in such circumstances.

ABA services are reimbursed by health insurance (e.g., commercial and/or government plans) through the processes of prior authorization and claims submission. In general, before beginning intervention, the ABA service provider must submit a prior authorization request to the payor and demonstrate that the health care services being requested are medically necessary for the client. Once the payor provides prior authorization for services, ABA intervention can begin. As services are rendered, the ABA provider submits claims to request payment for the services provided on a given day. ABA services are quantified by using different billing codes for each type of service and noting the amount of time each service was provided each day (e.g., 30 minutes of assessment, 3 hours of direct treatment)

There are currently two types of codes used for billing ABA services in the United States. The Current Procedural Terminology (CPT) Category 1 codes for adaptive behavior treatment were implemented on January 1, 2019 and are the most commonly used codes in the United States for documenting and billing ABA services, as of the writing of this article. The CPT Category 1 codes include assessment, direct treatment, protocol modification (clinical direction), family treatment guidance, and group treatment services. The CPT manual describes each code and the service providers qualified to deliver each service (American Medical Association, 2023). Prior to implementation of the CPT Category 1 codes, from 2014 through 2018, there were temporary CPT codes, referred to as the “T-Codes,” and there are still some T-Codes relevant to ABA services for conducting functional analyses and providing behavioral intervention services that require a ratio of two or more staff members working with a client simultaneously, to maintain safety. The second coding system used by some payors in the United States is the Healthcare Common Procedure Coding System (HCPCS). The HCPCS codes were used more often prior to the implementation of the CPT Category 1 codes in 2019.

State Government Structure

The authors will provide examples of advocacy efforts in Wisconsin, Arizona, and Massachusetts. Each of these state governments has a structure similar to the U.S. federal government with three branches: executive, legislative, and judicial. Table 1 presents an overview of each branch of government across these three states including the function of each branch and the predominant political leadership of each branch. The governor and members of the state legislature will have a political party affiliation, but judges within the judicial system do not represent political parties.

Table 1.

Overview of Arizona, Massachusetts, Wisconsin State Government System

Branch of Government	Executive	Legislative	Judicial
Highest Entity	Governor	2 Houses (Senate; Assembly/Representatives)	Supreme Court
Role/Responsibilities	Sign or Veto Law; Call state militia; Pardon/commute sentences	Set state budget; Pass bills; Pass resolutions	Consider constitutionality of state laws; Hear court appeals
Political Control
Arizona	Democrat (current) Republican (historical)	Republican	n/a
Massachusetts	Democrat as of 1/5/23 Republican 2015–2023	Democrat	n/a
Wisconsin	Democrat (current) Frequently alternates between parties	Republican	n/a

In the United States, the political system is made up of two primary parties, discussed below in alphabetical order. The Democratic Party tends to be more liberal and prefers for the government to provide higher levels of social services to constituents. The Republican Party tends to be more fiscally conservative, prioritizing lowering taxes and protecting individual autonomy. In general, Democrats favor more government programs whereas Republicans favor less government oversight of constituents. This distinction is important because Democratic controlled offices of government tend to be more supportive of programs related to health care, education, and social services. However, given that effective ABA intervention can result in long-term cost savings for the government, Republicans have also been known to support ABA services for autism spectrum disorder. It can be especially challenging to implement public policy changes when the governor’s office and state legislature are controlled by opposing parties, which is currently the case in Arizona and Wisconsin and was the case in Massachusetts until recently. Public policy advocacy efforts related to ABA can be a rare opportunity to find common ground for both political parties.

State of the States: Challenges and Opportunities

Wisconsin

The State of Wisconsin has a long history of effective advocacy by behavior analysts and parents of children with autism. As such, there has been state funding for ABA services for children with autism since 1994. From 2004 to 2016, a state waiver program, the Children’s Long-Term Support Waiver, funded intensive behavioral intervention for children with autism, and a mandate for commercial insurance to cover autism intervention went into effect in 2010 (Mandatory Coverage, Wis. Stat. § 632.895(12m), n.d.). These successes were achieved through the partnership of families and ABA providers who jointly advocated for funding for behavioral intervention services for autism. In 2016, the state funding for ABA transitioned from the Children’s Long-Term Support Waiver to the state Medicaid program, Forward Health, under a new Behavioral Treatment Benefit (Forward Health, n.d.). When this transition occurred, ABA providers faced several changes including adapting to a new funding structure (using CPT T-codes), new policies for service delivery, and an overwhelming demand for ABA services with the elimination of the Children’s Long-Term Support Waiver waitlist for funding for ABA.

Within one year of providing services under the new system, it was clear that some aspects of the Wisconsin Medicaid Behavioral Treatment Benefit were making it difficult for ABA providers to meet the demands for their services. Wisconsin ABA provider agencies began requesting meetings with members of the Department of Health Services who oversee the Medicaid Behavioral Treatment Benefit policy, in order to express their concerns and suggest actions to improve service access. ABA providers described the components of the policy that made it challenging for them to render services to Medicaid recipients including (1) outdated reimbursement rates (not reflecting increasing costs of providing services and inflation); (2) prohibition of billing multiple services provided during the same clock hour, even when the services are rendered by different clinicians (e.g., direct intervention by a technician and protocol modification/clinical direction by a behavior analyst); and (3) high administrative burden for credentialing clinicians, securing prior authorization requests, and submitting billing claims. As a result of these challenges, most ABA providers limited the number of Medicaid recipients they served, and some chose not accept Wisconsin Medicaid at all. Children with Medicaid were quickly placed on waitlists lasting 9–12 months or longer, whereas those with commercial insurance were able to access intervention soon after receiving an autism spectrum disorder (ASD) diagnosis. This growing disparity in access to services motivated ABA providers in Wisconsin to organize and begin new public policy advocacy efforts.

Arizona

Arizona’s autism insurance bill, HB 2847, was enacted on March 21, 2008 and became effective on June 30, 2009. The law, commonly referred to as “Steven’s Law,” required health insurance plans to cover ABA therapy for autism for children under 17. The mandate was largely supported by grassroots advocacy of parents and loved ones of autistic individuals. The mandate required coverage for autism treatment by commercial insurance plans but did not apply to self-funded insurance plans, Arizona’s Medicaid plans, and plans underwritten outside of Arizona. This left a significant proportion of Arizona residents without coverage for ABA services.

Arizona Health Care Cost Containment System (AHCCCS) is the Arizona Medicaid agency that offers state funded healthcare programs to serve Arizona residents. To be eligible for healthcare coverage with Arizona Medicaid, individuals must meet certain age, income, or disability requirements. In 2014, the U.S. Department of Health and Human Services issued a CMCS Informational Bulletin: Clarification of Medicaid Coverage of Services to Children with Autism (U.S. Department of Health and Human Services, 2014). With careful attention to the large number of Arizona residents who met the coverage requirements for Arizona’s Medicaid Program, as well as the (CMCS) Informational Bulletin, Arizona advocates set forth initiatives to expand coverage of ABA services regardless of age, diagnosis, or location when developing the Arizona Medicaid policy for ABA services.

In addition to Medicaid advocacy work, Arizona behavior analysts needed to establish a relationship with the Arizona State Board of Psychologist Examiners. In the early days of advocating for a licensing body for behavior analysis there was wide bipartisan support, however, the governor at the time vetoed the bill as the cost of establishing a new licensure board would have been exorbitant given the relatively low number of behavior analysts in the state at the time. A compromise was established to house the Committee on Behavior Analysis under the Board of Psychologist Examiners, which enabled oversight for the practice of behavior analysis in the state in 2010. However, the Committee on Behavior Analysis recommendations for granting licenses required full board approval from the Board of Psychologist Examiners, leading to delays and redundancies in the licensure process for behavior analysts. Today, the Committee on Behavior Analysis is composed of five behavior analysts in the state, of which two have served terms on the full Board of Psychologist Examiners. This group of professionals is charged with the protection of the public. Of note, at the time of the writing of this article, a licensed behavior analyst completed two consecutive terms as the chair of the full Board of Psychologist Examiners.

Massachusetts

The Massachusetts ABA commercial insurance mandate, Act Relative to Insurance Coverage for Autism (ARICA), was passed in 2010, and Massachusetts Medicaid (MassHealth) began covering ABA services in 2015. Although MassHealth providers are contractually obligated to provide timely services to MassHealth members, ABA professional organizations and individual practitioners were reporting barriers to fulfilling this obligation. These barriers included credentialing delays, turnover in direct-care positions, difficulties in hiring and retaining a highly qualified workforce, and offering competitive total compensation. In 2021, the cost of living in Boston, Massachusetts, had risen by nearly 13% since 2015, whereas MassHealth reimbursement rates remained the same over that time period. In addition, the original formula MassHealth used to calculate ABA rates was missing key information. It did not include costs that were required by state and federal regulations (e.g., funding of interpreter and translation services, costly reporting requirements, and training specifications) or other typical expenses for ABA practitioners (e.g., technology, facilities and equipment, and administrative costs). In addition, MassHealth was still using outdated HCPCS codes, which added a further administrative cost on both authorization and payment processes when working with clients who had both a primary commercial insurer using the CPT Category 1 codes and secondary MassHealth using the HCPCS codes.

As costs for providing ABA services grew and reimbursement rates remained stagnant, provider groups sought to advocate for expansion of the codes/services available for reimbursement, increased ABA service rates, and transparency in the rate analysis process for constituents.

Advocacy Actions (Intervention Planning)

Below is a comprehensive list of actions taken by the authors in their advocacy efforts, which they found to be helpful in achieving, or at least making progress toward, their long-term public policy goals. The Public Policy Advocacy Actions Checklist presented in Table 2 summarizes key components to advocacy efforts and notes which strategies were used in each state. For illustrative purposes, the State of Wisconsin will be presented as a case example of how the advocacy actions on the checklist were implemented successfully.

Table 2.

Public Policy Advocacy Actions Checklist

	WI	AZ	MA
Get Organized
Develop Action Plan	Yes	No	Yes
Research State Government Structure & Process	Yes	Yes	Yes
Establish a Trade Association	Yes	No	N/A
Identify a Primary Behavior Analyst Advocate	Yes	No	Yes
Hire a Paid Advocate Representing Association (Executive Director)	No	No	No
Hire a Lobbyist	Yes	Yes	Yes
Collect Data
Conduct Surveys	Yes	Yes	Yes
Circulate Petitions	Yes	Yes	Yes
Gather Testimonials	No	Yes	Yes
Inform Key Policy Makers of the Issue
Identify Key Policy Makers	Yes	Yes	Yes
Meet with Key Policy Markers	Yes	Yes	Yes
Host Treatment Center Tours	Yes	No	No
Attend Fundraisers	Yes	Yes	No
Testify at Public Hearings	Yes	Yes	Yes
Recruit a "Champion" for Your Cause	Yes	Yes	Yes
Connect with Community
Partner with Related ABA/Professional Groups	Yes	Yes	Yes
Partner with Self-Advocates & Stakeholders	Yes	Yes	Yes
Distribute Calls to Action	Yes	Yes	Yes
Reinforce Response to Calls to Action	Yes	No	No
Host a Rally	No	No	Yes
Submit an Op-Ed to a Community News Outlet	No	No	Yes

Get Organized

Develop an Action Plan

The first component in the process of developing an advocacy action plan should be familiar to behavior analysts: conduct an assessment. Advocates should identify the specific needs and opportunities given the current context. What is difficult regarding the current situation? What would the ideal situation look like? What are the barriers to reaching a preferred situation? What strengths or positive variables are present, which could be leveraged to increase the likelihood of success? In addition, one must consider any potential risks to opening up a public policy issue for discussion. Although the present situation may be less than ideal, how could things be worse than the present circumstances? What potential risks could be associated with a change to current policy, and how might the advocate mitigate those risks? A cost–benefit analysis of pursuing changes to public policy is critical prior to developing an advocacy action plan.

Based on their assessment, the advocate can identify long-term goals and short-term objectives. Next, the advocate needs to determine what supports or actions will be needed to reach their objectives. As advocacy work progresses, the advocate should continually reassess the effectiveness of their actions and modify their action plan accordingly. Assessment is a process behavior analysts regularly use in clinical practice, and these established skills can be generalized to public policy advocacy efforts. To support new behavior analyst advocates, Appendix A includes a list of public policy advocacy toolkits provided by state and national health organizations and the Association of Public Health Nurses (2021).

In Wisconsin, in 2017, ABA providers became aware of increasing demand for their services and growing waitlists. Challenges with hiring and retaining enough staff to adequately serve current clients made it difficult for providers to expand services and take on additional clients. Commercial insurance plans have significantly higher reimbursement rates than Wisconsin Medicaid, and the burdensome Wisconsin Medicaid processes to credential staff, secure prior authorizations, and submit billing claims were all contingencies that led to most ABA providers selecting commercial insurance clients over Medicaid clients, resulting in significant disparities in access to ABA services. The identified solutions included Medicaid rate increases, changing the policy to allow concurrent billing of direct treatment and protocol modification/clinical direction, and reducing the complicated and unique Medicaid requirements creating administrative burden for ABA providers.

In addition, some potential risks of changes to the Behavioral Treatment Benefit policy were identified. Most notable, the current policy includes a three-tier model of supervision, meaning that there is a mid-level clinician between the technician and behavior analyst who assists the behavior analyst with supervising technicians, conducting assessments, and providing caregiver training. This service model allows behavior analysts to work with more clients, because they have support with supervision and training, and thus increases provider capacity to serve more clients. A change to a two-tier model (i.e., technician and behavior analyst only) would reduce service access and be counterproductive. Therefore, throughout advocacy efforts, ABA providers in Wisconsin worked closely with the members of the Department of Health Services who oversee the policy, to express the importance of the three-tier model, in order to maintain current provider capacity.

Research State Government Structure and Processes

Unless the advocate is already fluent in their knowledge of the system they are trying to advocate within, learning about that system is an essential action early in the advocacy process. In the field of nursing, Jurns (2019) found a positive correlation between rating one’s understanding of how public policy is developed and frequency of engagement in advocacy efforts. Jurns (2019) further explains that although there are some differences across local and national systems, there are many similarities. The authors of this present article are in agreement with Jurns, and they expect that although discussion in this article is focused on state-level advocacy, a similar approach may be useful at the local municipality or national level as well as internationally. To help readers compare and contrast their government system with the systems of Arizona, Massachusetts, and Wisconsin, an overview of these state governments is presented in Table 1.

Prior to beginning advocacy efforts, advocates can learn about their local government by reviewing the government website and/or interviewing people who are knowledgeable of government structure and processes. Through discussions with lobbyists, the first author learned invaluable information regarding state government offices, their scopes of responsibility, procedures and policies, and the timelines for relevant government processes. Another important variable for consideration is whether policy makers’ roles are elected or appointed. For elected officials, reelection is often a relevant motivating factor, and thus public opinion a more salient stimulus. The timing of the election cycle and legislative calendar are equally important variables when developing advocacy action plans.

In Wisconsin, the state legislative branch is made up of two houses: the Assembly and the Senate. Each house has a leader from the majority party (currently Republican) and from the minority party (currently Democrat). In addition, the president of the Senate and the speaker of the Assembly (both majority party members) make for a total of six legislative leaders. The state legislature passes bills and the state budget, which are signed or vetoed (i.e., rejected) by the governor. Therefore, in order to implement a new law or include funding for an issue in the state budget, both the legislature and the governor need to support the issue, which is especially difficult in Wisconsin because the governor and majority control of the legislature represent opposing political parties. In addition to the leadership of these two branches of government, departments and committees can play key roles in influencing policy change. In Wisconsin, the Department of Health Services and Department of Education report to the governor. The legislature also has a number of committees focused on specific policy issues or serving particular functions. One key example is the Committee on Finance, which oversees development of the state budget.

Given that much of the recent ABA related advocacy in Wisconsin has focused on funding for ABA services, knowledge of the state budget process has been crucial to the success of advocacy efforts. The Wisconsin biennial budget begins July 1 every two years (e.g., July 1, 2023 to June 30, 2025). Generally, the governor submits their proposal for the budget to the legislature in February of the second year of the budget cycle. Next, the Committee on Finance reviews and modifies the budget, which is then submitted to both houses for approval. Each house then makes their own modifications to the budget, before approving it, which typically occurs around June. Finally, the Wisconsin governor has an impactful line-item veto power, meaning that the governor may strike items out of the legislature’s budget, but the governor may not add items to the budget, before signing. Therefore, it is critical to have the governor’s support for an issue, in addition to legislative support, to ensure an item is not stricken from the budget. It would be disappointing to have an issue included in the budget by the legislature but then vetoed by the governor. Understanding the government system and processes and having a clear action plan are critical to success.

Establish a Trade Association

Successful public policy advocacy requires a substantial amount of time, effort, knowledge, and action, and therefore it is recommended to take a team approach to advocacy. Indeed, Hodge and Raymond (2023) note that professional associations are an important vehicle for achieving change in public policy. Most states in the United States already have professional organizations representing behavior analysts, such as state ABA associations, which vary greatly in their size, member engagement, and financial resources. In cases where the state ABA association is not well-positioned to take on costly and effortful advocacy work, the authors found it useful to establish a trade organization representing ABA agencies. When the members of a trade organization are business entities, as opposed to individual practitioners, the membership dues can generate significant funds, which will be necessary to hire a dedicated behavior analyst advocate from within the association, such as an executive director position, and to retain a lobbyist.

The Wisconsin Autism Providers Association (WAPA) was formed in 2017 with the primary goal of engaging in advocacy efforts to increase access to ABA services for children with Medicaid, and WAPA quickly engaged experienced lobbyists upon its formation. When creating a trade organization for the purpose of engaging in public policy advocacy, it is recommended to research the different types of nonprofit organization statuses and ensure the type of organization formed is allowed to engage in lobbying efforts, according to local and federal regulations. Consultation with an attorney and/or lobbyist organization can be helpful when establishing a new trade organization for this purpose.

It is important to note that federal and state anti-trust laws in the United States prohibit companies from collectively making agreements to fix prices, and most contracts with commercial insurance companies prohibit health-care providers from disclosing their contracted service rates (Federal Trade Commission, 2023). Therefore, ABA agencies must exercise caution when sharing information as members of a trade organization, and they may not disclose their contracted reimbursement rates for commercial payors with each other. However, state Medicaid reimbursement rates are publicly published and therefore can be openly discussed by ABA agencies without violating state or federal law.

Identify a Primary Behavior Analyst Advocate

Given the high response effort required for effective advocacy, trade organizations should consider funding an executive director, or similar position, who dedicates a predetermined amount of time per week or month to engaging in advocacy efforts. Although the first and fourth authors each serve the role of primary advocate for their respective organizations, this role is not a paid position for either the Wisconsin Autism Providers Association or the Berkshire Association for Behavior Analysis and Therapy. During times of more intensive advocacy efforts, the first author has spent up to 25 hours per week engaged in advocacy activities, which can be a challenge to balance with her weekly work responsibilities as a behavior analyst. When advocacy responsibilities are assigned to an individual on a volunteer basis, it can be easy for competing contingencies (e.g. a behavior analyst’s clinical work and “day job”) to interfere with engaging in high-effort advocacy behaviors. Therefore, although it is not absolutely necessary that this role be a paid position, the authors strongly recommend considering funding this role, to help ensure the primary advocate is able to devote the necessary time to advocacy efforts.

As an alternative, some organizations may consider having a team of individuals share in the advocacy efforts, such as dividing up meetings with policy makers, to reduce the burden on any one individual. Although this approach may be time efficient, the authors would caution against this approach, based on their experience, for a few reasons. First, meeting with policy makers can be intimidating to the novice advocate. Often, a new advocate’s first few meetings with policy makers will be challenging, as the advocate is still learning how best to communicate their message efficiently, with people in positions of power, during brief interactions. Having multiple new advocates conducting several individual meetings will provide fewer learning opportunities for each advocate and result in more total meetings with policy makers during which the advocates are less than fluent in communicating their issue. By having one primary person leading advocacy efforts, that advocate can quickly gain experience, adjust their approach in subsequent high-stakes meetings, and develop fluency in this unique skill set.

Second, by having the same behavior analyst advocate conduct multiple meetings with policy makers over time, policy makers will become more familiar, and hopefully more comfortable, with the advocate. For example, during subsequent meetings with the same legislators, the first author has been greeted with comments such as “I remember you!” with a broad smile, followed a productive meeting that included more in-depth discussion of the issue. This type of relationship development is exceptionally helpful for successful advocacy. If it will be necessary for multiple individuals to participate in meetings with policy makers, it is highly recommended that novice advocates are paired with more experienced advocates, so they can observe successful communication, practice themselves, and get feedback from a trusted colleague as they develop this skill set.

Hire a Lobbyist

For advocacy efforts that require legislative action or funding through the state budget process, the authors highly recommend hiring an experienced lobbyist, who is a subject matter expert in advocacy and can make important introductions to key policy makers. More importantly, a lobbyist will be fluent in the hidden curriculum and local politics, which may be difficult for a novice advocate to learn through traditional research methods. Lobbyists can leverage their existing relationships with policy makers (i.e., positive pairing), and follow up with policy makers more regularly than the advocate would be able to (i.e., increased learning opportunities). For example, lobbyists often encounter policy makers during chance encounters walking down the hall of the capitol and at social or fundraising events.

Although a lobbyist can be an important partner in the advocacy process, policy makers will give more weight to information provided by those with first-hand knowledge (e.g., behavior analysts and service recipients). The authors have found that working as a team with a lobbyist can be highly effective, because the behavior analyst is the subject matter expert on the issue, and the lobbyist is the subject matter expert on the process of public policy change. The authors would caution against hiring a lobbyist to do the advocacy work “for” the behavior analyst (meaning having the lobbyist lead meetings and efforts without the behavior analyst present) but instead highly recommend that the lobbyist work “with” the behavior analyst advocate as equal partners. For resources related to selecting a lobbyist, see Appendix B.

Collect Data

Data are crucial in successful public policy advocacy. Each of the advocacy toolkits presented in Appendix A recommend that healthcare advocates use data to support their issue and recommended public policy changes when communicating with policy makers. Advocates should collect data to document the challenges they are describing and, when possible, gather data that demonstrate the beneficial impact of the policies for which they are advocating. For example, research on the long-term cost savings of investing in early, intensive, behavioral intervention for children with autism suggests significant cost savings due to decreased support needs, ranging from $200,000 to over $1,000,000 per individual over their lifetime (Chasson et al., 2007; Jacobson et al., 1998; Larsson, 2012; Peters-Scheffer et al., 2012). These data are highly compelling to individuals overseeing the state budget who are motivated by the long-term financial health of the state government.

Conduct Surveys

The Wisconsin Autism Providers Association (WAPA) collects data regularly on the number of children in Wisconsin on ABA waitlists. These data are gathered by sending an email to all providers in the state, including those who are not WAPA members, and requesting they report on the size and duration of their waitlists. Individual responses are kept confidential, and results are only presented in aggregate form. This survey and data collection effort is an example of ABA agencies, who may be considered “competitors” in a business sense, working together for the greater good. The most recent surveys conducted in August 2020 and September 2022 had response rates of 80% and 73%, respectively, indicating that the vast majority of ABA agencies willingly shared their data in support of WAPA’s advocacy efforts. These data were compiled to estimate the total number of children on waitlists across the state.

This system of measurement has flaws, including that one child may be on waitlists for multiple agencies, which would inflate the estimate. In addition, the length of an agency’s waitlist will vary over the course of the year as they receive new client inquiries and as clients on the waitlist begin services. Lastly, some agencies do not maintain waitlists at all. Although these data are imperfect, they are the best estimate available for quantifying challenges with accessing ABA services, without disclosing protected client health information, which would violate federal law. WAPA has been collecting these data in the same manner for several years, and therefore the combined waitlist estimates can be compared overtime, as an indicator of whether access to ABA services is improving or deteriorating, depending on whether the estimated waitlist shortens, grows, or remains the same, year on year. WAPA’s most recent waitlist estimate was nearly twice the total from 2 years prior, indicating that it has become significantly more challenging for children to access ABA services. These data are used to support WAPA’s advocacy efforts and their claims that waitlists for ABA intervention are excessive and growing. More information about how to increase engagement in surveys and other “call to action” efforts will be discussed below.

Circulate Petitions

Petitions are another useful form of data, as they quantify the level of public concern on a given issue. In spring 2022, WAPA created an online petition to change Wisconsin Medicaid policy to allow for concurrent billing of direct intervention and protocol modification. Over 1,000 people signed the petition, demonstrating to policy makers that this is an issue their constituents care about.

Gather Testimonials

Qualitative data can be highly compelling. Christopher et al. (2015) described the power of having clients share their own stories with policy makers to capture their attention and motivate them to learn more and act on the issue. Personal accounts from constituents in their own district are likely to have the biggest impact for policy makers. Behavior analysts have an ethical obligation to present data in a fair and objective manner and to be thoughtful regarding any potentially problematic dual relationships that may develop if a behavior analyst asks a current client to provide a personal account of their experience with ABA services (Behavior Analyst Certification Board [BACB], 2020). In an effort to maintain integrity, behavioral analysts should only share testimonials that are consistent with a typical service recipient’s experience rather than presenting best-case or worst-case scenarios as the norm. Testimonials that highlight the challenge and proposed solution can take multiple forms including in-person meetings, virtual meetings, observations of intervention sessions, letters/emails, and recorded video messages. Although we do not have data to recommend one form of testimonial over another, we hypothesize that more emotionally salient stimuli will be more influential. Table 3 summarizes different types of testimonial data and considerations such as hypothesized emotional salience and constituent response effort.

Table 3.

Testimonial Data and Considerations

Type of Testimonial	Emotional Salience	Response Effort for Stakeholder	Permanent Product
Face-to-face meeting between stakeholder and policy maker	High	High	None
Policy Maker observing treatment session (with consent)	High	Low	None
Video Conference between stakeholder and policy maker	Moderate	Moderate	None
Stakeholder writes a letter/email to policy maker	Low	Moderate	Yes
Stakeholder creates video message for policy maker	Moderate	Moderate	Yes

Inform Key Policy Makers of the Issue

Identify the Key Policy Makers

The authors use the functional stimulus class term “policy makers” to refer to various elected and appointed individuals who are able to implement policy changes. Examples include the governor, legislative representatives, department directors, and their support staff. On a basic level, the more people who are aware of and care about the issue, the better the chances of success. However, time is often one’s most limited resource, and it may not be feasible to meet with all potential policy makers for a given issue. A good starting point can be to meet with one’s own representatives (e.g., the senator or representative who was elected by the advocate’s home district). Elected officials have the highest obligation to their own constituents, who will have influence as to whether or not the official is reelected. The advocate’s own representatives will be more likely to care about the advocate’s issue, and they may identify other policy makers who may support the advocate’s efforts.

In addition, a lobbyist can support the advocate to employ strategy when deciding which policy makers to meet with and when. Based on the relevant government processes and timelines, advocates should identify the policy makers who are most likely to care about their cause and who are in a position to take meaningful action. For example, the Wisconsin Legislature includes more than 130 senators and assembly representatives. Meeting with each member of the legislature would not be time efficient and could prove impossible. For advocacy efforts related to Medicaid policy, the first author started her efforts by meeting with the members of the Department of Health Services (under the governor’s purview) who oversee the Behavioral Treatment Benefit, because they are in a position to make policy changes that do not exceed a certain annual cost to the state budget. For policy changes that would exceed this set amount, approval is required by the Committee on Finance, the legislative committee who oversees the state budget. Thus, the first author has also focused her advocacy efforts on meeting with members of Committee on Finance, which has 16 members, and meeting with a handful of other senators and representatives who have a history of supporting policy related to health care and special needs children. This strategy reduced the number of key policy makers to about 25, which was far more practical than meeting with over 130 members of the state legislature.

Meet with Key Policy Makers: Considerations

The American Public Health Association has published a tips sheet for making the most of meetings with policy makers, which includes preparing for the meeting, scheduling the meeting, confirming the meeting, arriving on time, bringing colleagues to the meeting, sharing resources, and following up with a thank you letter (American Public Health Association, 2009). In Appendix C, the authors present tips for actions to take prior to, during, and after meetings with policy makers. In addition, the tool kits presented in Appendix A provide many resources to prepare new advocates for meeting with policy makers.

When meeting in-person with multiple policy makers, advocates can use their time efficiently by attempting to schedule several meetings in the same day at the state capitol when legislators are scheduled to be in the office. It can be helpful to schedule such meetings when there are events occurring at the capitol related to the advocate’s issue or during times of the year when the issue is recognized. For example, in Wisconsin there is typically an event at the capitol during the first week of April to formally declare April Autism Acceptance Month. This event presents an excellent opportunity to schedule meetings with policy makers who will be present that day. World Autism Day and World Behavior Analysis Day are also excellent times to arrange meetings with policy makers.

Meet with Key Policy Makers: Conducting the Initial Meeting

Securing meetings with policy makers can be challenging, and such meetings will likely be brief (30 minutes or less) and infrequent. Advocates need to be prepared to vocally explain the issue and their proposed solution in a comprehensive yet concise manner. The authors recommended being prepared to describe the facts relevant to the issue in a few sentences and to avoid technical language whenever possible. The Wisconsin Public Health Association (2010) recommends, “When presenting the facts about an issue, you want to be prepared to provide solutions, suggestions or ideas that address the issue. Your proposed solution(s) needs to be grounded in best-practice research if possible," (p. 16). In addition, the Wisconsin Autism Providers Association’s lobbying team recommends having a single page handout that outlines the issue and proposed solution to serve as a permanent product for the policy maker (see Appendix D as an example).

Policy makers will expect meetings to include a request for them to do something specific, often referred to as the “ask.” Gomez and Saal (2022) describe the “ask” as the primary reason for meeting with policy makers. Asks should be actionable. Example: “Include a 10% reimbursement rate increase for ABA services in the state budget.” Nonexample: “Consider more funding for services.” In order for the “ask” to serve as an SD for action, the advocate should also clearly state the reinforcement available if the policy maker engages in the behavior being asked of them. For example, the advocate can explain the anticipated impact of a rate increase on current waitlists for services and share information about the number of constituents affected by the issue in their district.

Advocates should follow up with the policy maker after the meeting by sending a “thank you” email. Advocates can include additional relevant resources/information and gently remind the policy maker of their specific ask.

Host Treatment Center Tours

When a policy maker shows interest in the issue and a willingness to support the advocate, the authors recommend inviting the policy maker to tour an intervention center, to see ABA in action and its positive impact on clients. Hosting a tour also provides an opportunity for an extended meeting with the policy maker to dive deeper into the issue and increase their motivation to support the advocate’s proposal.

Attend Fundraisers

Another way to secure individual meeting time with a key policy maker can be contributing financially to fundraising events. Attending fundraising events provides opportunities for one-on-one conversations with policy makers to discuss the issue and the ask. The first author has attended fundraising events for the current governor, which resulted in brief but important conversations with the governor and expedient follow up by the Department of Health Services, which reports to the governor. She also attended a fundraiser for a senator on the committee drafting the state budget, which was helpful to establish the senator as an ally in advocating for Medicaid to reimburse providers for both services when protocol modification/clinical direction services are rendered by a supervisor at the same time that direct treatment is conducted by a technician. Another Wisconsin Autism Providers Association board member attended a fundraising event for the previous state governor, which was critical to securing an increase in Medicaid rates for ABA services in 2018, following more than 14 years of stagnant reimbursement rates.

Testify in Public Hearings

Different states have their own systems for seeking input from the public on a variety of issues. Advocates may have opportunities to provide testimony during meetings and/or to submit their testimony in writing as part of such events. The first author has provided live testimony during virtual town hall meetings hosted by the governor’s office as well as in-person town hall meetings hosted by the Committee on Finance, both of which were intended to solicit constituent input for the state budget. In both cases, the “testimony” consisted of constituents having the floor for 2–3 minutes to describe their issue and their ask, which did not leave time for asking/answering questions. These town hall meetings also offered an option for submission of written testimony, regardless of whether a constituent attended the live meeting, which allowed individuals to share more details than they could provide in 3 minutes during the live town hall event.

In September 2020, during a virtual legislative council symposium on autism identification and intervention, the first author was invited to present for 30 minutes, which included delivering a rehearsed presentation slide show followed by a brief question and answer session. The symposium was recorded, so that legislators who could not attend the live event would be able to access the information presented. In addition, when a piece of legislation is being considered, the legislature may hold hearings to gather public input, which can be an opportunity for providing testimony and educating policy makers on the issue.

Recruit a Champion for the Cause

During the process of meeting with key policy makers, the advocate will observe varying levels of interest and commitment to act from different individuals. Although the successful advocate will need to convince multiple key policy makers to support their suggested solution, it can be highly effective to identify one or two key policy makers who are strong supporters of the cause and willing to take action, such as submitting a budget request or proposing a bill to the legislature. Such a key policy maker is referred to as the “champion” of the issue. Presskreischer et al. (2023) noted that having a policy champion is a common theme in successful public policy advocacy efforts, and these authors could not agree more.

Advocates should find a champion who will not only take action but also recruit additional policy makers to join them. A true champion will persist when there is opposition to the proposed solution. For example, in Wisconsin, the senator who championed a Medicaid reimbursement rate increase in the 2021 state budget was not on the Committee on Finance, but he submitted a budget request for a rate increase, recruited a colleague in the Assembly to submit a parallel request for the Assembly’s budget and worked with his “budget buddy” (i.e., his partner on the Committee on Finance) to keep the request in the final budget.

Connect with the Community

Partner with Related ABA/Professional Groups

Andermann (2016) explains the importance of community engagement and stated that health-care advocates should partner with local leaders and community stakeholders in meaningful ways, early on in the advocacy process. By allying with organizations and individuals, an advocate can demonstrate the magnitude of their issue to policy makers. Probably the easiest allies for behavior analyst advocates to obtain are local ABA organizations and practitioners. In Wisconsin, the Wisconsin Autism Providers Association (WAPA) and Wisconsin Association for Behavior Analysis (WisABA) have partnered on multiple projects including jointly drafting letters and position statements related to the COVID-19 funding and vaccination roll out, opposing conversion therapy, promoting contemporary ABA practices, and supporting efforts to increase access to ABA services. Behavior analyst advocates should also partner with neighboring state ABA associations and national organizations such as the Council for Autism Service Providers (CASP) and National Coalition for Access to Autism Services (NCAAS).

Partner with Self-Advocates and Stakeholders

More importantly, behavior analyst advocates need to partner with stakeholders who represent the people they serve. Establishing collaborative relationships with the local Autism Society and other organizations supporting self-advocates and families is crucial to successful public policy advocacy related to autism. Rightfully so, autistic self-advocates use the slogan "Nothing about us without us," meaning that public policy affecting the autism community should include autistics and their loved ones as part of the discussion and decision-making process. Behavior analysts can build and strengthen their connections with the local autism community in a number of ways. In Wisconsin, ABA provider organizations sponsor and actively participate in local Autism Society Affiliate fundraisers. The first author regularly presents at the annual conference for the Autism Society of Greater Wisconsin to connect with self-advocates, families, and nonbehavioral service providers. Behavior analyst advocates can serve on the boards of organizations supporting individuals with autism to contribute their time and to learn from the community they serve.

When advocacy is related to payor policies or reimbursement rates, partnership with payors is paramount. In the case of Medicaid reimbursement rates, establishing a collaborative relationship with the members of the department who oversee the Medicaid policy for ABA is crucial. In May 2017, Wisconsin ABA providers contacted the members of the Department of Health Services in charge of Medicaid policy and requested a meeting to collaboratively discuss potential changes to the policy and reimbursement rates. The Department of Health Services actually recommended the ABA providers formally organize and establish a trade association to engage in public policy advocacy, leading to the establishment of the Wisconsin Autism Providers Association in November 2017. This advice was a game changer and much appreciated by the providers.

Call to Action

What is a Call to Action?

A “call to action” is when an advocate encourages as many constituents as possible to contact their representatives, express concern about the issue, and ask for the proposed solution. Such large-scale efforts require a high level of response effort by both the advocate and the community, but they can have quite an impact. According to the American Public Health Association (2009), “. . . your policy makers welcome your opinions and expertise on issues affecting you, your community and your state. Writing a letter to your Senators and Representative can be very effective in influencing health reform legislation. . .” (p. 15). When disseminating a call to action, the advocate needs to consider the relevant antecedent and consequence variables in order to maximize the likelihood that community members will respond to their request.

When to Make a Call to Action

It can be tempting to initiate calls to action early in the advocacy process, in order to spread word of the issue and proposed solution. However, the authors would recommend waiting until there is an immediate action for policy makers to take before initiating calls to action, such as when policy makers are about to vote on an issue. In Wisconsin, during the 2021 budget process, a Medicaid rate increase had been included in an initial draft of the budget but was removed when the budget process was nearing completion. The Wisconsin Autism Providers Association distributed a call to action (see Appendix E), by emailing all ABA agencies in the state, Wisconsin Autism Society Affiliates, WisABA, autism evaluation providers, and other agencies invested in children’s behavioral health (e.g. Milwaukee Coalition for Children's Mental Health). Over the years, the first author has developed a personal email distribution list including dozens of autism community stakeholders, as a result of the actions described in the Connect with the Community section of this article. This specific call to action encouraged constituents to contact their representatives and demand that the funding be reinstated in the budget. During the budget deliberations, the senator in charge of the healthcare section of the budget stated that she “heard loud and clear” the need for increased funding for autism services when she explained that a rate increase for ABA services would be included in the final version of the budget, indicating that this call to action was critical to success.

How to Make a Call to Action

Just as when they develop a behavior change plan for a client, behavior analyst advocates should consider the desired outcome, response effort required of stakeholders, the establishing operations, and the reinforcement available. The actions recommended in the “Connect with the Community” section are intended to establish the behavior analyst advocate and their proposed solution as reinforcers for stakeholders. Without a strong, positive relationship with the behavior analyst advocate and/or issue, as well as reason to think their actions will contact reinforcement, it is unlikely that community stakeholders will respond to effortful calls to action.

When sending out a call to action, the authors recommend that the communication is as concise as possible while including the following information: (1) describe the issue (create an establishing operation); (2) explain how the community can help by acting (provide the SD for contacting reinforcement); and (3) provide clear and easy steps for taking action (description of the target behavior). The advocate should do all they can to reduce response effort for community members to respond to calls to action, describe smaller and more easily accessible reinforcers (e.g. informing policy makers, having their voice heard, contributing to the community), and describe the likelihood of accessing the bigger long-term reinforcers with large-scale action (desired policy change). The call to action should be distributed to all potential constituents who may be motivated to respond. Social media channels can be especially helpful in spreading the word quickly and widely when distributing calls to action. Example calls to action are provided in Appendix E.

Don’t forget to reinforce! Reinforcement is easiest when the call to action is successful. The advocate should report positive results back to the community following successful calls to action and highlight how the grass-roots effort by the community made a significant impact in achieving the outcome. It is important to note that there may be a significant time gap between the call to action and achieving the desired outcome. In such cases, it is important to provide timely reinforcement to those who responded to the call to action by thanking them for their efforts and reminding them how they are helping implement positive changes in their community. When the desired outcome is not achieved, it will be even more important to provide reinforcement, so that the community will be likely to respond to future calls to action. At a minimum, advocates should thank the community for participating. It is also helpful to describe any positive progress toward the outcome, such as informing policy makers of the issue and joining together as a community. Lastly, the follow up communication should describe follow-up actions and foreshadow future initiatives the community can participate in to support the issue.

Host a Rally

The purpose of a political rally is to demonstrate support for the cause. In the case of advocacy for ABA services through Medicaid, a rally can help motivate professionals, families, and elected officials to take action in their support for the cause. To host a rally, the organizers should identify a target date for the rally that considers that primary audience’s schedule (i.e., professionals, families, members of the legislature). The event can be held in-person, virtually, or as a hybrid event. Political rallies and demonstrations that take place in-person are often held outside of the state Capitol or other political focal point for the state. Doing so can help generate additional attendees and attract media attention. Once the date and venue are identified, the event details should be shared widely. If applicable, the lobbyist can share a flyer for the rally with their contact list of policy makers, such as staffers and elected officials.

The agenda for the rally should be preplanned and may include a lineup of speakers. Consider including speakers who are compelling and can speak passionately about the issue. Also consider whether multiple speakers can offer different perspectives that can collectively generate more enthusiasm, such as including the voices of autistic individuals, parents, clinicians, and other professionals. Including a call to action in the closing of the rally can be a great way to capitalize on the enthusiasm of the event and yield action following the event.

During and following the rally, ensure that the attendees and their contact information are recorded. A thank-you note and follow-up action items via email can help the advocacy efforts continue after the rally.

Submit an Op-Ed to a Community News Outlet

An op-ed is an opinion piece submitted to a media or news outlet that can bring attention and interest to your issue. Most major news outlets publish op-eds and include information on their website for how to submit an op-ed. When identifying a news outlet for your op-ed, consider your audience, the constituents you would like to reach, and where they get their news. If you are working with a lobbyist, they may have contacts at news outlets who can help get your op-ed published.

When writing the op-ed, consider who the author(s) should be based on their credibility and competence around the issue. The piece should include a powerful argument advocating for your cause that is supported with facts. The goal of the op-ed is to persuade the reader to take your viewpoint on the issue and to take action on the issue. The op-ed should anticipate the arguments of the opposition and dismantle the opposition’s argument. Once the op-ed is submitted and ultimately published, it can be shared widely to generate additional support.

Summary of Public Policy Advocacy Actions Checklist

The activities included in the Public Policy Advocacy Actions Checklist are intended to provide an overview of the many components to successful public policy advocacy, at a glance. Specific actions are grouped together into four categories (get organized, collect data, inform key policy makers of the issue, and connect with the community) for the purposes of organizing and simplifying the complex process of public policy advocacy. It is important to note that the order of the actions on the checklist is not intended to be interpreted as a set of sequential steps that must occur in the order presented. The advocacy process is typically nonlinear and more cyclical in nature, with advocates assessing progress, modifying their strategy, and repeating some actions throughout their advocacy journey.

In general, developing an action plan and researching local government structure/process are recommended to occur early on in the advocacy process, so that the advocate has a clear goal and plan as well as a solid understanding of the potential barriers and opportunities within their local system. Depending the on the history of local advocacy efforts on a given topic by behavior analysts or stakeholders, the actions of establishing a trade organization, identifying/hiring a primary advocate, and securing a lobbyist may occur earlier or later in the process.

It is recommended that connecting with the community and establishing relationships begin as soon as possible, and remain a priority throughout the advocacy process. Connecting with the community should continue even after advocacy goals are reached, for maintenance purposes. Developing strong relationships with a variety of stakeholders (e.g., other behavior analysts, self-advocates, families, payors) is always important and will only help promote the field of behavior analysis.

Likewise, collection of data relevant to the issue should occur early on in the advocacy process, ideally prior to meeting with key policy makers, so that the advocate has the data available to share during meetings. Key policy makers may have follow-up questions about the data or may request data the advocate has not yet collected, in which case a new wave of data collection may be warranted. Depending on the timeframe of advocacy efforts, follow up data collection may also be advantageous. For example, the Wisconsin Autism Providers Association collects new survey data on waitlists for ABA services approximately every 18–24 months, and having repeated measurement over time has been valuable to validate their survey results.

In order to identify a willing champion, advocates will need to meet with several key policy makers, inform them of the issue, identify policy makers who are supportive of the issue and finally ask a policy maker who seems likely to say “yes” to be their champion. Thus, meeting with key policy makers is one of the few items that is generally a prerequisite for another action, recruit a champion. Typically, meetings with policy makers will occur in their office (either at the capitol or in their district or virtually) prior to policy makers accepting invitations to attend center tours. Offering key policy makers a variety of opportunities and methods for meeting (in-person at their office, virtually, at an intervention center) may increase the probability that they will accept the modality of meeting that they prefer. The funds available for advocacy efforts are usually limited, and therefore the authors recommend attending fundraisers (which requires making a financial contribution) only after conducting initial meetings with key policy makers and identifying potential champions for their issue. It would not be economical to contribute funds to policy makers who have not expressed an interest in supporting the issue.

Lastly, the timing of some actions may be based upon the timing and processes of the system within which the advocate is trying to implement policy change. For example, the opportunity to testify in public hearings will only occur when public hearings are scheduled. Detailed information is provided above regarding the timing of making calls to action. It is generally recommended that calls to action occur later in the advocacy process, when there is an action that policy makers can take, rather that at times when immediate action is not available.

Communication Tips

In recent years, the field of behavior analysis has been making an effort to improve practitioners’ soft skills and the reputation of the field. In Appendix F, the authors make some suggestions for communication with policy makers and stakeholders, with the goal of establishing behavior analyst advocates as positive reinforcers and signals for taking action on public policy issues.

Addressing Barriers in Public Policy Advocacy

Although these authors have enjoyed some meaningful achievements in public policy advocacy, they have also faced adversity and disappointment, which will inevitably be part of the advocacy process. Below are a few examples of barriers to reaching advocacy goals, and how they were addressed. Similar to the process of addressing barriers to clinical progress, the authors recommend taking a functional approach to problem solving. When a barrier is identified, steps should be taken to understand the reasoning (function) behind the barrier and use that information to develop and implement an action plan.

Opposition is to be expected, no matter how noble, logical, or economical the advocate's issue and ask may seem. When others actively criticize or try to block the advocate’s efforts, it can be tempting to respond defensively, but such a response will only create more barriers between advocate and their goals. Instead, the authors recommend the advocate take time to sincerely listen to criticism and examine any potential truth or value from the perspective of the opposition. This reflection may actually help the advocate identify ways to clarify their description of the issue and proposed solution, as well as correct misconceptions. The advocate may even learn how to make their case stronger when they receive critical feedback by addressing any valid concerns that have been raised. By taking the high road and demonstrating a willingness to listen and collaborate, the advocate will pair themselves with positives and avoid damaging relationships.

In the first author’s first season of advocating during the state budget process, on the day the Committee on Finance was voting on funding for ABA, a high-ranking member in the Department of Health Services told members of the legislature that they were opposed to increasing the funding for ABA, and as a result the motion was not passed. In this instance, by the time the advocate and lobbying team were aware of the opposition, the Committee on Finance was already in a closed meeting and voting was complete, so they were not able to intervene prior to the decision being finalized. Therefore, after learning of the unfavorable result, the first author’s lobbyists followed up with their contacts in the legislature to get more information about what happened and which next actions would increase the likelihood of accessing more funding in the future. In collaboration, the advocate and lobbying team decided to meet with the person who opposed the funding increase, in an attempt to understand their perspective and repair their relationship, because that individual’s support would be necessary for the success of any future advocacy efforts related to Medicaid funding. Although it would have been understandable for the first author to approach this meeting with a tone of frustration toward an “opponent” who blocked her goal, that would not have been effective. It was essential for the advocate to remain professional, curious, and positive in order to rebuild rapport, find common ground, and gain this individual as an ally, or at a minimum, as a neutral party who would not undermine future advocacy efforts.

In a very different situation the following budget cycle, an influential legislator involved in drafting the budget asked the first author her opinion on funding for purchasing robots to teach emotional skills to children with autism in elementary schools. There was an implication that if the first author supported funding for the robot intervention, the legislator would be more willing to support her request for increased funding for ABA services. This situation presented an ethical dilemma, given the lack of empirical evidence for the robot-delivered intervention. The author initially replied that she was unfamiliar with the intervention, which was true, and that she would like to research it further before making a decision about endorsing the robot intervention. Upon researching the specific robot and intervention program, it was confirmed there was no high-quality research supporting its efficacy. In an effort to respond ethically, remain true to her values, and maintain a positive relationship with this key policy maker, the first author responded to the legislator that she would recommend more research be conducted, perhaps a pilot program, before large scale implementation of the robot program, due to the limited research on the intervention.

Another barrier encountered by behavior analyst advocates has been when nonbehavioral service providers attempted to modify a budget proposal for increased ABA funding, to include rate increases for their services as well. Given the years of advocacy work the first author had invested to get policy makers to support the budget proposal for increased funding for ABA, she initially had a strong emotional reaction to another group of service providers expecting a similar outcome without putting forth similar effort. After taking time to reflect and regulate her own private events, she provided a logical and objective rationale to keep the budget proposal as originally written, for ABA service codes only, and not expanding the funding to nonbehavioral interventions. She had data on significant service access issues and waitlist numbers for ABA services in particular. She also called attention to data on the potential long-term cost saving to the state for investing in early, intensive, behavioral intervention. Non-behavioral service providers did not have similar data to demonstrate service assess issues or cost savings for their services. In addition, adding rate increases for other services would significantly raise the total cost of the budget proposal and would hurt the chances of the ABA rate increase being included in the final version of the budget. With this logical reasoning, the ABA champion was able to politely decline the request from the nonbehavioral service providers to be included in the budget motion for reimbursement rate increases.

Successes and Ongoing Advocacy Efforts

Wisconsin

The Department of Health Services team that oversees the Behavioral Treatment Benefit policy holds stakeholder meetings twice per year, which include Wisconsin Autism Providers Association (WAPA) and the Wisconsin Association for Behavior Analysis (WisABA) as well as other community stakeholders. This ongoing collaboration has resulted in multiple favorable policy changes including streamlining the prior authorization process for children under age 6. In March and April 2020, the Department of Health Services accepted feedback from ABA providers and implemented an emergency telehealth policy that increased access to services at the height of the COVID-19 pandemic. In December 2022, group behavior intervention codes were added to the Behavioral Treatment Benefit policy. This ongoing collaboration and partnership between WAPA and the Department of Health Services has been critical to the WAPA’s successes in public policy advocacy.

Since the Wisconsin Autism Providers Association (WAPA) was formed in 2017, the collaborative efforts of ABA agencies across the state have resulted in multiple advocacy successes. In 2018, a 33% rate increase for direct intervention ABA services was implemented by the previous governor, using Medicaid surplus funds. WAPA continued to advocate for increased funding in the 2019 budget process, but this effort was unsuccessful as noted above. Although they were not able to get a Medicaid rate increase in the 2019–2021 budget cycle, key policy makers acknowledged the importance of addressing service access challenges and suggested WAPA apply for a Legislative Council Study Committee, which is a process that takes place on nonbudget years, to research various issues and identify potential legislative or budgetary solutions. WAPA applied for a Legislative Council Study Committee in February 2020, and despite the COVID-19 pandemic, they secured one of only four Wisconsin Legislative Council Studies to take place in 2020 via a virtual symposium format. During the symposium, the first author was able to provide information related to autism, ABA, WAPA’s waitlist survey data, and service access challenges, leading up to a request for a reimbursement rate increase and other favorable Medicaid policy changes. One senator who hosted the event later became WAPA’s champion for the 2021–2023 budget cycle, proposing a 25% rate increase for ABA services. After a series of calls to action (described in detail above), the final 2021–2023 budget included a 15% rate increase for ABA services, beginning January 1, 2022.

In September 2022, the Wisconsin Autism Providers Association (WAPA) conducted an updated waitlist survey, which included asking providers if they were considering leaving the Medicaid network due to the current policy and available funding. The survey results indicated that 32% of Wisconsin ABA agencies who currently accept Medicaid were “seriously considering” withdrawing from the Medicaid network unless concurrent billing of direct intervention and protocol modification was implemented in the immediate future. On February 1, 2023, the governor implemented an 8.7% rate increase for all ABA service codes as a stop-gap measure to maintain the network of Medicaid ABA providers.

As of the writing of this article, the Wisconsin Autism Providers Association (WAPA) continues its efforts to change Medicaid policy and secure the required funding to allow concurrent billing of direct intervention and protocol modification, in an effort to address ongoing ABA service access disparities for children with Medicaid compared to those with commercial insurance. Unfortunately, the funding for this initiative was not included in the 2023–2025 state budget, which was voted on in June 2023. The first author, WAPA, and their lobbyists are currently gathering information about the barriers that lead to this outcome and identifying alternative pathways to achieve their goal. Wisconsin behavior analyst advocates remain committed to pursuing equal access to ABA services for children with Medicaid.

Arizona

In early efforts, Arizona advocates leveraged language from the federal Early Periodic Screening Diagnostic Testing (EPSDT) benefit as the means for covering ABA services. Since 1967, the federal government has required state Medicaid programs to cover any age-appropriate medical screening or diagnostic testing as well as preventive and treatment services to address any issues identified in the screening or diagnostic process (Social Security Act, 2012). By utilizing the broad language in the federally required EPSDT benefit when drafting the Arizona Medicaid policy, the Medicaid benefit provides coverage for ABA services for other chronic health conditions outside of autism and ensures immediate access to care for all Arizona Medicaid members under the age of 21.

Another favorable aspect of the Arizona Medicaid policy for ABA services is the “Pay and Chase” structure for coordination of benefits when a Medicaid recipient has both commercial insurance and Medicaid. Federal law states that when any claim is submitted for preventive pediatric services, including screening, diagnosis and treatment of chronic health conditions or developmental delay, the state must cover the cost through their state Medicaid program. Further, although it is understood that Medicaid is a payor of last resort, the Arizona Medicaid plan is required to pay the claim directly, regardless of the status of any commercial healthcare coverage. It is then the responsibility of the Arizona Medicaid plan to coordinate benefits with the primary, commercial payor. This language puts the burden of coordinating healthcare benefits on the state, reducing administrative barriers for ABA agencies to provide services funded by Arizona Medicaid.

The federal EPSDT language also requires timely access to assessment and treatment services. By including such language in Arizona’s Medicaid policy, advocates ensured that delays to pediatric assessment and treatment services do not occur as a result of prior authorization requirements. In addition, service access cannot be delayed due to an ABA provider’s network status with the primary payor (i.e., credentialing and contracting), so long as the provider rendering the service is registered with Arizona’s Medicaid Agency. In most cases, providers must also be credentialed and contracted with the managed health plan responsible for covering the Medicaid services, however, if an in-network provider is not available within 21 days, an out of network provider, registered with Arizona’s Medicaid Agency, may be eligible to provide services.

In addition to the advantages of including EPSDT language in the Arizona Medicaid policy, coverage for ABA services is not restricted by age. Arizona advocates were able to secure coverage for medically necessary ABA services for all Arizona Medicaid members, regardless of age or diagnosis. The Arizona Medicaid policy includes the provision of ABA services across all location sites, including school-based services, and the state has formally adopted language that covers the commonly used ABA CPT codes for telehealth service delivery.

The Arizona Medicaid policy also uniquely defines a qualified health professional as being a licensed behavior analyst (LBA) or a behavior analysis trainee providing services under the direction of an LBA. The behavior analysis trainee role includes three types of practitioners: (1) matriculated graduate students enrolled in and actively obtaining supervision toward licensure as a behavior analyst; (2) nationally certified behavior analysts who are currently not licensed in Arizona; and (3) assistant behavior analysts. Trainees may practice under the direction of an LBA so long as supervision is provided to all trainees in alignment with the statutory requirements of supervision, BACB Ethics Code for Behavior Analysts, and clinical standards of practice. This broader definition of qualified health professionals in the Arizona Medicaid policy allows for more behavior analysts to practice within the Medicaid program and thus expands access to ABA services in the Arizona community.

Although there have been significant advocacy accomplishments in the State of Arizona, and in particular with regard to Medicaid policy, there is much room for improvement. As of the writing of this paper, the published rate for ABA CPT codes is considered “by report” in which the Medicaid plan agrees to pay a percentage of the usual and customary fee charged by each provider. Due to the limitations in available research establishing usual and customary rates, and the limited data on ABA service rates across the country, each individual health plan has been determining their rates individually with provider agencies. The individual plan and provider contractual agreement has made it difficult for providers to ensure reimbursement rates are appropriate and adequate. This also allows for the individual plans to make rate adjustments (including rapid rate cuts) outside of the public comment regulations, an issue recently faced by providers at the time of the writing of this article.

In addition, there continues to be conflict around the definition of medical necessity for ABA services with individuals over the age of 21 and/or individuals who have a primary diagnosis other than ASD. Many loved ones of service recipients describe facing a “services cliff” as their children with special needs reach adulthood, because robust treatment options are only available to members under the age of 21. After age 21, there are limited to no services available unless funded through commercial insurance payers or private funding.

Arizona providers are engaging in advocacy efforts illuminated in this paper to remediate the concerns with status, or lack thereof, of an Arizona Medicaid assigned fee schedule as well as to address the access to care issues for autistic adults and other populations in which ABA services have been shown to be effective. Local providers, subject matter experts, and local stakeholders are meeting with the Medicaid team in ongoing conversations to discuss feedback and solutions for potential improvement. In April 2015 a statewide ASD Advisory Committee was established by the Governor’s Office, representing a broad range of stakeholders to address and provide recommendations to strengthen services for the treatment of Autism Spectrum Disorder. Recommendations from the ASD Advisory Committee Report are publicly available for review.

Massachusetts

Advocacy for increased Medicaid rates in Massachusetts involved both a state trade organization (Massachusetts Coalition for ABA Practitioners or MassCAP) and a state professional organization (Berkshire Association for Behavior Analysis and Therapy, or BABAT). After some initial work by MassCAP, the two organizations partnered to launch a successful initiative with its own website and action center, Autism Services 4 Mass. The goal of this partnership was to increase access to ABA services and reduce wait times by increasing Medicaid reimbursement rates. The result of the efforts was an increase of approximately 11% across ABA codes/rates, transition to the Category 1 Codes, and retention of the HCPCS assessment code.

In May 2021, MassCAP began gathering information about rate and code reviews in Massachusetts and made a public records request to obtain the formula by which rates had been originally determined. Quarterly meetings between MassCAP and MassHealth provided a forum for MassCAP to share barriers to service provision and suggest that a code and rate review may offer solutions. This inspired MassHealth to host a listening session with providers in the state; MassCAP was invited to join and offer feedback. As a follow-up to the listening session, MassCAP sent a letter outlining recommendations, which included adopting a hybrid code set (including the AMA CPT Category 1 codes, although retaining certain HCPCS-codes), and increasing rates for ABA services.

An organizational member of MassCAP engaged a lobbyist in December 2021 to develop a campaign to support the initiative. Much of the process was similar to other states and can be found in Table 2; Massachusetts also took some unique actions. Autism Services 4 Mass held a policy briefing and rally in March, 2022, which was attended by legislators. The State House News Services (an independent news wire that covers state government activities) subsequently wrote a piece about the rally, garnering more attention for the initiative to increase rates as a means of improving access. The advocacy group submitted an Op-Ed on the initiative to Commonwealth Magazine, published in March 2022.

In April 2022, an amendment was proposed that specified its purpose was “to reflect changes in the cost of providing ABA services in order to reduce the wait list and wait times for access to services.” The rate review was executed, proposed rates were released in June 2022, Autism Services 4 Mass provided testimony at the public hearing in July 2022, and new rates took effect in October 2022.

Discussion

Comparison of Advocacy Efforts in Wisconsin, Arizona, and Massachusetts

Table 2 illustrates which advocacy actions were taken by behavior analyst advocates in Wisconsin, Arizona, and Massachusetts during recent advocacy efforts over the past 5–10 years. Most actions from the checklist were taken in in all three states during this timeframe, with any exceptions noted in Table 2. Of course, advocacy efforts related to autism intervention and ABA service access occurred in each state prior to the actions discussed in this article, and those efforts warrant recognition. The advocacy efforts discussed here are those in which the authors were directly involved and/or had direct knowledge from those leading the efforts.

The most significant difference in the recent advocacy efforts between Arizona, Massachusetts, and Wisconsin is the level of direct involvement by families and grass roots participation. In Arizona, parents of children with autism and/or special needs have played a significant role in the advocacy efforts described here, which is most often the case in public policy advocacy related to ABA and/or autism intervention. Recent advocacy efforts in Wisconsin have been led by behavior analysts and ABA agencies, with families supporting by responding to calls to action and contacting their representatives. In Wisconsin, parents were highly involved in past advocacy efforts, initially in 2003 when state funding for autism intervention was threatened and again in 2009 supporting the autism mandate for commercial insurance coverage. The most recent advocacy work in Wisconsin has been related to access issues for children with state healthcare coverage, which tends to be a more socioeconomically disadvantaged population. The families most affected by service access challenges in Wisconsin, Medicaid recipients, often face multiple barriers to engaging in public policy advocacy efforts including higher financial need, lower education attainment, multiple children with special needs, and often parents have their own medical needs. Although the advocacy efforts in Wisconsin have been led by behavior analysts recently, rather than led by service recipients, these efforts would not have been successful without the support of families and partnership with the organizations supporting the autism community.

Conclusion

Successful public policy advocacy efforts tend to follow a circular, rather than linear, path and never truly cease. In an effort to describe and illustrate the strategies included in the Public Policy Advocacy Actions Checklist, the authors presented each action in a sequential manner. However, these actions were intentionally not referred to as “steps” because they may occur at different points along the advocacy journey and may need to be repeated. Advocacy efforts must be frequently reassessed and modified to maximize the likelihood of a successful outcome, much like clinical practice in behavior analysis. Just as a behavior analyst continues to learn new clinical knowledge and skills throughout their career, the work of a public policy advocate is never truly complete. Successful outcomes such as passing laws related to licensure and securing funding for ABA services are meaningful and should be celebrated. However, it is important to remember that such achievements may not be permanent. As new policy makers come into power, existing laws can be overturned, new laws can be implemented, and funding can be reduced, resulting in the need for further public policy advocacy. Behavior analysts who engage in public policy advocacy efforts should be remain vigilant and avoid the complacency that can follow successful implementation of policy changes. They should continue to maintain strong relationships with the community they serve and with key policy makers to maintain their achievements, identify opportunities to further increase access to ABA services, and protect against proposed policy changes that could negatively affect those they serve.

Stone (2023) wrote, "It may be cliche, but the process is a marathon, not a sprint. In this race, winners are those who continue to compete, recognizing opportunities, and advancing toward the finish line. 'The arc of the moral universe is long, but it bends toward justice,' Reverend Martin Luther King, Jr., said. Advocacy follows the same path.” Indeed, public policy advocacy is not for the faint of heart, but neither is behavior analytic practice. Although most behavior analysts do not have explicit training or experience in public policy advocacy, they already have many skills in their repertoire that will prove advantageous in advocacy efforts.

Although this article has focused on public policy at the state level, with Medicaid reimbursement rates as a primary focus, many of the strategies described herein may be useful for behavior analysts across the world as they advocate on a variety of issues to advance the field and the well-being of their clients. The authors recommend that behavior analysts who are interested in getting involved in public policy advocacy utilize the resources included in this article and consider the following actions: actively participate in their state ABA association, encourage their ABA agency to join the state trade association (or start one if their state does not have one), network with current advocates, and most importantly, connect with community stakeholders and self-advocates.

Funding

No funding was received in preparation of this article.

Data Availability

This article has no associated data to share in a data repository.

Declarations

Conflicts of Interest

The authors listed herein do not have competing interests associated with the submission of the article.