Feature Issue on Person-Centered Positive Supports and People with Intellectual and Developmental Disabilities

In late 2010, the National Associa­tion of State Directors of Developmental Disabilities Services (NASDDDS), in partnership with the Center for Disabil­ity Resources (CDR) at the University of South Carolina, conducted a national survey of state developmental disabilities agency policies and practices regarding be­havior supports. The survey, the first of its kind, was initiated in response to the need to document the nature, type, and scope of behavior support services that are provided to adults with intellectual and develop­mental disabilities (IDD) through publicly funded service systems in the United States. Specifically, the study assessed: (a) the settings in which behavioral supports are offered; (b) qualifications practitioners must meet to be eligible to provide the service; (c) reimbursement strategies and funding mechanisms; (d) behavior support provider training requirements; and (e) state policies and practices governing the oversight and provision of behavioral supports, quality assurance, availability of behavioral support providers, and the challenges experienced by state agencies in this area. The need for this informa­tion is pressing as states fund, permit, and regulate a variety of interventions to meet the needs of people with challenging behaviors, all while there is no national standard for behavioral support practices or source of information on the status of behavior support policies, practices, and services for adults with IDD at either the state or national level. In the absence of solid national data on the qualifications of professionals providing behavior supports and the nature of the services provided, states have historically been left to develop their own service definitions and profes­sional qualifications or draw them from other sources.

While full details of this study and the corresponding results can be found in the original complete manuscript titled “State Policies and Practices in Behavior Sup­ports for Persons With Intellectual and Developmental Disabilities in the United States: A National Survey” in the journal Intellectual and Developmental Disabilities published by the American Association on Intellectual and Developmental Disabili­ties (AAIDD), this abbreviated adaptation will highlight some of the key takeaways that emerged and that are likely to be of interest. These include:

• the absence of standard and consistent service definitions;
• the lack of widespread licensure for qualified behavioral support providers;
• differing policy/procedural and skill requirements across treatment setting; and
• the overwhelming need for qualified providers.

The results gathered through this seminal survey, which included responses from 44 states plus the District of Columbia, provide a starting point for appropriately informed and coordinated quality improvement efforts.

States, plus the District of Columbia, that Participated in the Survey

Setting the Stage: Positive Behavior Supports as a Personal, State, and National Issue

Publicly financed service systems for peo­ple with IDD are significantly challenged in their efforts to support individuals with intensive behavioral needs, their families, and the providers who work with them. Ideally, support strategies and therapeu­tic approaches are tailored to the specific needs of the individual and function to strengthen his or her ability to live a pro­ductive and satisfying life in the commu­nity with friends and family.

State IDD agencies support a variety of interventions to meet the needs of people with problem behaviors. A review of the service defini­tions included in states’ home and com­munity-based Medicaid waiver programs furnished under Section 1915(c) of the Social Security Act reveals that virtually every state offers some type of behavioralsupport service to eligible individuals with IDD. The application of behavioral supports, particularly positive behavior supports (PBS), has resulted in significant behavioral and quality of life changes in the lives of many people with IDD (e.g., Carr et al., 1999; Carr et al., 2002; Reichle, Freeman, Davis, & Horner, 1999; Risley, 1996). Unfortunately, research into the widespread use of behavioral approaches has been hampered by two of the survey’s key takeaways – service definitions and provider qualifications.

Service Definitions and Terminology

The term ‘‘behavior supports’’ was used in this study to capture information on services that include behavioral assessment and intervention to increase appropriate behavior, decrease inappropriate behavior, and teach new skills to replace problem behavior. Such services are referred to in different settings and states as applied behavior analysis, behavior management, behavioral intervention, behavior supports, and/or positive behavior supports. These services can be provided alone or as part of a broader support plan (ideally, person centered). Depending on a state’s service definition, the plan may be called a be­havior support plan, behavior intervention plan, PBS plan, or document with some other title.

From a professional perspective, applied behavior analysis (ABA refers to ‘‘the science in which tactics derived from the principles of behavior are applied sys­tematically to improve socially significant behavior and experimentation is used to identify the variables responsible for the improvement in behavior’’ (Cooper, Heron, & Heward, 2007, p. 20). From a more practical perspective, ABA uses functional assessment and analysis to determine the relationship between a person’s behavior and environmental variables, and then makes changes in those variables to im­prove the occurrence of socially significant behaviors. These changes are then exper­imentally assessed to verify the impact of the intervention (see Baer, Wolf, & Risley, 1968 for a more complete description).

Many states and treatment programs have begun using the term ‘‘positive behavior support’’ (PBS) to refer to certain types of services available to ameliorate problem behaviors. The term PBS, originally intro­duced by Horner et al. (1990), is defined as ‘‘a set of research based strategies used to increase quality of life and decrease prob­lem behavior by teaching new skills and making changes in a person’s environment’’ (Association for Positive Behavior Support [APBS], 2007). It was recently described as an approach that ‘‘grew from the scien­tific and procedural foundations of applied behavior analysis, benefitting, in particular, from the technologies of functional assess­ment and analysis’’ (Dunlap, Carr, Horner, Zarcone, & Schwartz, 2008, p. 683).

Key literature on PBS has described the approach as emerging from ‘‘three major sources: applied behavior analysis, the normalization/inclusion movement, and person-centered values’’ (Carr et al., 2002, p. 4). Although the practice of PBS has become more fully developed for use with both children and adults over the past 20 years (see, generally, Journal of Positive Behavior Interventions), the PBS litera­ture includes a preponderance of studies focused on children (Marquis et al., 2000), particularly within primary and secondary education systems (see apbs.org and the Journal of Positive Behavior Interventions). Given the gap in the literature, this study focused on the use of behavior support strategies in publicly funded services for adults with IDD.

When states were asked if their agency uses the term ‘‘positive behavior supports’’ in its policy or training efforts, 87% of states reported such use of this term. Those responding “yes” to this question were asked to provide an indication of how PBS is defined in their state. How­ever, only 62% of the states that reported using the term positive behavior supports provided a definition. Of those states that did provide information on their state’s definition of PBS, very few included information reflecting even a minimal number of the components that com­prise this approach (e.g., addressing the function of the problem behavior, focus on teaching skills to replace problem behavior, increasing quality of life). In fact, many of the responses regarding states’ use of the term positive behavior supports indicated that the state (a) did not have a definition of PBS, (b) that the definition is currently under development, (c) that the term is loosely defined, or (d) that the term is defined differently depending on the audience.

The findings concerning how states are defining PBS are problematic given that the term PBS directly implies imple­mentation of supports that use research/ evidence-based strategies to first enhance the person’s quality of life and, second, to minimize problem behavior (APBS, 2007; Carr et al., 2002). The appropriate defi­nition of PBS ‘‘renders problem behavior irrelevant, inefficient, and ineffective by helping an individual achieve his or her goals in a socially acceptable manner, thus reducing, or eliminating altogether, episodes of problem behavior’’ (Carr et al., 2002, p. 5). Thus, it is quite possible that ‘‘definition creep’’ is occurring in many states, if not nationally, regarding the use of the term PBS. That is, the term is being used by state IDD agencies in a manner that does not reflect the actual implemen­tation of PBS practices.

Qualifications of Behavioral Support Providers

Regardless of whether behavioral sup­port services are referred to as behavioral supports, behavior management, PBS, or applied behavior analysis, important questions remain regarding the specific nature of the services that are furnished underneath these titles; the qualifications that are required to provide the service; and the methods used to ensure, measure, and maintain quality. Expertise in delivery of behavior supports requires specialized study, training, and skill, but the prac­tice does not constitute a licensed and/or certified profession, as is the case with medicine, physical therapy, social work, speech and language pathology, and other disciplines.

Regardless of whether behavioral support services are referred to as behavioral supports, behavior management, pbs, or applied behavior analysis, important questions remain regarding the specific nature of the services that are furnished underneath these titles; the qualifications that are required to provide the service; and the methods used to ensure, measure, and maintain quality.

Recent licensure of behavior analysts in a small number of states may be changing this picture in some areas, but for the most part, there is not universal agreement on the professional domain that has the right to provide these ser­vices, even though behavior support is based on a foundation of applied behavior analysis. In highlighting the complexity of the issue, Rotholz and Jacobson (1999) noted that most licensed psychologists do not have training in applied behav­ior analysis or PBS, nor do they practice in these areas. Likewise, certification in applied behavior analysis does not provide sufficient indication about the certificate holder’s qualifications in the broader field of psychology or PBS. Although there is overlap in professionals practicing ap­plied behavior analysis and psychology, the authors concluded that it would be a mistake to make assumptions about the qualifications of an individual professional based on certification or licensing alone. Complicating matters further, receiving certification in applied behavior analysis does not provide assurance of the certif­icate holder’s experience in the services required to competently serve individuals with IDD. Applied behavior analysis is a broad field and not all practitioners work in the area of IDD nor do they all have expertise in all of the areas pertinent to the provision of person-centered planning and positive behavioral support. 

To explore the provider qualification requirements that are in place across the nation, the survey asked respondents to indicate the minimum requirements needed for a person to write a behavior support plan for a person with IDD. Types of requirements from which respondents could select included psychology license, Board Certification in Behavior Analysis (BCBA), doctoral degree, master’s degree, Qualified Mental Retardation Professional (QMRP), BA/BS under professional su­pervision, BA/BS with no supervision, not applicable, and other. Forty-seven percent (47%) of states reported that a master’s degree was the minimum requirement, followed by other (33%) (see comments below), Qualified Mental Retardation Professional (QMRP) (29%), psychology license (29%), BA/BS under professional supervision (22%), BA/BS without super­vision (16%), BCBA (13%), and doctoral degree (13%; see Table 1)

As noted above, one third of the respon­dents reported having “other” minimum requirements for a person to write a be­havior support plan that were not among the alternatives included in the survey form. Approximately 2% of states indicat­ed that a person must be a ‘‘PBS specialist certified by the University Center for Excellence,’’ 4% of states indicated the requirement of BCBA, and 4% of states reported having no minimum require­ments. The comments also listed additional qualifications such as master’s degree in psychology, special education, social work, or counseling, and licensure as a psychol­ogist, mental health counselor, physician, nurse, or social worker. Although one state required that the licensed professional have ‘‘competencies in applied behavior analysis, PBS, ethics, co-occurring mental disorders, and neurocognitive disorders,’’ most did not. The comments provided by respondents indicated that a majority of states required qualifications that include training, experience, skills and/or licensure in areas that do not necessarily reflect competence in applied behavior analysis or PBS.

Table 3. Difference in State Behavior Support Provider Qualifications: Required Skills for State and Non-state Employees by Percentage of States

Policy, Procedural, and Skill Requirements Across Treatment Settings

In addition to the significance of service definition and the discussion surrounding provider qualifications, the settings in which behavior supports are provided and the corresponding procedural requirements of that setting warrant attention. The survey asked several questions on policies, the first of which ascertained whether or not procedural requirements for behavior support services differed between Inter­mediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) and home and community based settings (HCBS). Fifty-six percent (56%) of states indicated that such requirements differed across settings, with 36% of states whose requirements differed indicating that the requirements were less stringent in HBCS.

Although a significant proportion of the individuals served in institutional settings are in need of behavior support services, the overwhelming majority of adults receiving services funded by state devel­opmental disability agencies, including those with significant problem behaviors, are being supported in local communities and settings (although the quality of this support has not been well scrutinized [Larson, Scott, Salmi, & Lakin, 2009]). Twelve states have closed all of their public institutions for people with IDD and have shifted the base of service delivery to the community.

The lack of a rigorous, professionally endorsed national standard such as medical licensure that applies to behavior supports for people with IDD raises significant questions regarding the ability of states and provider agencies to set practice criteria and assure the quality and appropriateness of the services being provided across settings...

The movement of significant numbers of individuals with intensive needs to the community raises questions regarding the appropriateness of the less stringent requirements in community pro­grams regarding the provision of behavior supports, provider qualifications, and state oversight responsibilities.

A discrepancy in qualification require­ments between state and non-state employees was also evident (see Table 3), with key PBS skills more often required for non-state employees. While it is unclear whether this discrepancy results from the progression from public to private settings as the primary choice for services, closer examination of the reasons why the requirements differ is crucial. This discrepancy is particularly important since most people with IDD are supported in community settings (i.e., HCBS) and these individuals experience behavioral and other challenges just as serious and complex as those served in ICF/IID programs. Thus a key question is why many states have different requirements for ICF/IID programs and HCBS and how best to ensure appropriate require­ments in the HCBS.

It is evident that state agencies serving individuals with IDD are challenged in their efforts to develop and maintain high standards in provider qualifications, training, and quality assurance. While in most areas of professional practice (e.g., medicine) clear professional requirements set the minimum qualifications for practi­tioners with respect to education, train­ing, supervised experience, and licensure necessary to insure ‘‘industry standards of quality,’’ this is not the case in the area of behavior supports. The lack of a rigorous, professionally endorsed national standard such as medical licensure that applies to behavior supports for people with IDD raises significant questions regarding the ability of states and provider agencies to set practice criteria and assure the quality and appropriateness of the services being provided across settings (i.e., ICF/IDD and HCBS).

When asked if there are enough high-quality providers of behavior supports in their state.  82% of states  responded “no” and 18% responded “yes.”

Although it is worth noting that there is a national certification in ap­plied behavior analysis from the Behavior Analyst Certification Board, that certifi­cation does not address the skills required for PBS that go beyond applied behavior analysis. At present, it appears that states interested in ensuring provision of PBS may need to take direct action to meet this obligation.

Lack of Qualified Providers

The last set of questions asked in the survey had to do with state policies and practices that govern the oversight and provision of behavioral supports, qual­ity assurance methods, the availability of behavioral support providers, and the challenges experienced by state agencies in these areas. When asked if there are enough high-quality providers of behav­ior supports in their state, 82% of states responded “no” and 18% responded “yes.” While this finding has relevance in many ways, we can only speculate on the reasons that led to such responses. For example, while the 82% of states that reported insufficient numbers of highly qualified providers demonstrated an important national need, we cannot report on how some states meet that need. It’s possible that some states have training programs that either enhance professionals’ skills in this area or train new providers in PBS sufficient to meet service needs. It is also possible that some states excel at providing truly person-centered community training and supports that reduce the need for be­havioral supports from their state ID/DD agency. In either case, this is an important topic to explore in future research.

Conclusion

The finding that behavior supports are furnished by all states responding to the survey underscores the importance of this key service. But the data also reveal many of the challenges that state agencies serv­ing persons with IDD experience in the delivery and oversight of behavior supports and behavior support providers. The vast majority of states indicated that they did not have enough high quality providers of behavior supports. This shortage, plus the lack of a national consensus or standard regarding staff qualifications, service definitions, professional oversight, and quality assurance, underscores the need to address these issues at both the state and national levels. This study undertaken by NASDDDS and CDR was intended to be the first step to that end. Hopefully, the next step is for collaborative efforts to improve policy and, most importantly, practice in the area of behavior supports in all states.