Restraint, restrictive interventions, and seclusion are hotly contested practices with inconclusive evidence of their effectiveness. Because the use of restraint and seclusion on people with intellectual and developmental disabilities (IDD) is controversial and its effectiveness doubtable, this study was conducted to explore if and how they were permitted in Medicaid HCBS 1915(c) waivers, the largest providers of long-term services and supports (LTSS) for people with IDD. To do so, 111 fiscal year 2015 IDD waivers from across the nation were examined to determine if and how states permitted restraint, restrictive interventions, and seclusion. Findings revealed an overwhelming majority of waivers permitted the use of restraint (78.4%) and restrictive interventions (75.7%). A smaller proportion (24.3%) allowed the use of seclusion.
Practices such as restraint, restrictive interventions, and seclusion have been traditionally applied to people with psychiatric disabilities and people with intellectual and developmental disabilities (IDD), particularly when they exhibit aggressive behavior. They are often used in institutions, schools, nursing homes, and hospitals (Ferleger, 2008). Yet these interventions prove to be controversial. The literature presents conflicting results about the safety of restraint and seclusion, and ethical concerns exist regarding their use, including concerns about the loss of personal freedom and rights (Scheirs, Blok, Tolhoek, Aouat, & Glimmerveen, 2012), not to mention evidence of physical and psychological harm. Staff may believe that restraint and seclusion are the safest and most effective ways to interact with an aggressive individual with disabilities despite evidence of negative outcomes of these interventions (e.g., death, injury, and/or emotional trauma; Knox & Holloman, 2012).
Table 1 describes the general definitions of restraint, restrictive interventions, and seclusion. There are three types of restraint that may be used for people displaying aggressive behavior: physical, mechanical, and chemical. Physical restraint is the application of force to address aggressive behavior; it is different from other types of physical contact that do not involve force and/or aggressive behavior (e.g., physically guiding an individual by holding their hand or physical contact to comfort an upset individual). Often, mechanical restraint is conceptualized as a type of physical restraint. However, mechanical restraint uses objects (e.g., straps) to restrain an individual while physical restraint uses bodily force to inhibit an individual. Chemical restraint introduces medications into the body in order to control or address aggressive behavior. Restraint may be planned or used in an emergency or crisis situation; emergency or crisis restraint is less safe than planned restraint (Williams, 2009). Factors such as organizational and governmental policies, staff training, and staff behavior affect the extent and application of restraint use (Ferleger, 2008).
Restrictive interventions may be confused with physical restraints or even with seclusion. Generally, restrictive interventions impinge upon the rights of people who are exhibiting aggressive or problematic behavior. Examples of restrictive interventions include preventing a person from leaving their house or visiting a friend, loss of other privileges, loss of access to personal property (e.g., iPad or video game system), or increased supervision. Seclusion involves the separation of someone from others by placing them alone in a room that may be locked or unlocked, depending on policy.
Controversies and Ethical Concerns
People with IDD may exhibit various types of aggressive behavior, such as damaging property, physical aggression, sexual aggression, verbal aggression, and self-oriented aggression (Crocker et al., 2006). Professionals generally agree that physical restraint should be applied only to address serious aggressive behavior (Luiselli, 2009). However, a Canadian study of people with IDD found that those who communicated using pictograms, took anxiolytics, exhibited severe aggressive behavior, and/or had a personal support worker with limited experience were more likely than their counterparts to encounter restrictive interventions (Merineau-Cote & Morin, 2013). Controversies and ethical concerns around using restraint, restrictive interventions, and seclusion coalesce around the physical health risks, psychological trauma, limitations of personal freedom, and humiliation that the procedures impose upon people exhibiting aggressive behavior.
Restraint poses the most serious physical health risks to people with disabilities. Despite the continued use of restraint, literature demonstrates that it poses serious threats to the health and safety of people with IDD and the person performing the restraint, especially when the restraint is not performed correctly (U.S. General Accounting Office, 1999). Restraint may result in death of the people being restrained but also physical and/or emotional harm to the person being restrained and/or the person restraining (Evans, Wood, & Lambert, 2003; Ferleger, 2008; Fisher, 1994; Mohr, Petti, & Moh, 2003; Rakhmatullina, Taub, & Jacob, 2013; U.S. General Accounting Office, 1999). A study of emergency restraints found that around one in three restraints resulted in injury, though most of the injuries were minor (Tilli & Spreat, 2009). Restraints that involve neck holds or that obstruct breathing (nose and mouth) have higher risks of fatality (Ferleger, 2008). A specific type of mechanical restraint called hobble tying is especially dangerous. Hobble tying occurs when a person is lying on their stomach (prone) and their wrists and ankles are tied together behind their backs; the tie acts as the mechanical restraint. A study of 214 excited delirium cases by Stratton, Rogers, and Brickett (2001) found that death occurred in 18 cases due to struggle or restraint using the hobble tying mechanical restraint.
These procedures can also cause psychological trauma. Physical restraint can elicit past memories of abuse for the person being restrained (Fish & Culshaw, 2005). Research has also found that staff implementing physical interventions found them to be upsetting and traumatic and consequently experienced feelings of guilt and self-condemnation when implementing these physical measures (Fish & Culshaw, 2005). Due to the emotional trauma associated with physical interventions, staff reported that these were a last resort—though people with disabilities did not necessarily agree with this statement (Fish & Culshaw, 2005).
In addition to physical and psychological risks, these techniques also limit freedom, dignity, and personal choice. One of the critiques of restraint is the humiliation of the person to whom the intervention is being applied (Ferleger, 2008). The very definition of restrictive interventions, for example, relies on the loss of personal freedom and rights.
In addition, the use of restraint, restrictive interventions, and seclusion may exacerbate problem behaviors, diminishing the effectiveness of the procedures (Luiselli, 2009). A literature review by Busch and Shore (2000) found a lack of evidence to support the benefits and risks of these procedures in addressing aggressive behavior in adults. Moreover, research also documents the low social acceptability of restraint use (Tilli & Spreat, 2009).
Medicaid Home and Community-Based Services Waivers
Medicaid Home and Community-Based Services (HCBS) 1915(c) waivers were added to the Social Security Act in the 1980s during a time when people with disabilities received most of their services and supports in institutions. The purpose of the waiver program was to expand successful community living by providing community-based services. Prior to the creation of HCBS waivers, people with IDD who did not live with families had few options other than segregated institutional settings. However, the HCBS program allows service delivery in integrated community-based settings, including individual, family, and group homes.
Waivers allow states to waive key Social Security Act requirements including statewideness, comparability of services, and income and resource rules, which permits states to determine target groups, services furnished, participant direction, provider qualifications, health and welfare strategies, and cost-effective delivery (Disabled and Elderly Health Programs Group et al., 2015). As a result, states are able to target underserved populations of people with disabilities or chronic health conditions (e.g., HIV/AIDS, traumatic brain injury, older adults) and/or provide customized services to fit an elevated need for that population (Centers for Medicare and Medicaid Services, n.d.-b). For example, waivers may provide services such as personal assistance, day habilitation, or residential habilitation (Centers for Medicare and Medicaid Services, n.d.-b). The Centers for Medicare and Medicaid Services (CMS) requires waivers to describe CMS assurances and requirements; levels of care; waiver administration and operation; participant access and eligibility; participant services, including limitations and restrictions; service planning and delivery; participant direction of services; participant rights; participant safeguards; quality improvement strategies; financial accountability; and cost-neutrality demonstrations (Disabled and Elderly Health Programs Group et al., 2015). Although waivers are required to detail all of these parts, the flexibility granted to states by the waiver program has resulted in a wide variance across states in terms of service provision and waiver administration (Friedman, 2017).
Surpassing intermediate care facilities for people with developmental disabilities in 2000, HCBS waivers are now the largest provider of long-term services and supports (LTSS) for people with IDD (Braddock et al., 2015; Rizzolo, Friedman, Lulinski-Norris, & Braddock, 2013). In fiscal year (FY) 2015, HCBS waivers projected spending $25.6 billion in federal funds for community services for 630,000 people with IDD (Friedman, 2017).
Because the use of restraint, restrictive interventions, and seclusion on people with IDD is controversial and its effectiveness doubtable, this study set out to explore its allowability in Medicaid HCBS waivers. To our knowledge, this is the first study to explore whether and how HCBS waivers across the nation permit these techniques. This exploration will not only allow us to map which states are permitting the use of these controversial techniques and how they are doing so, but will also provide research for advocates to target areas of need to have these harmful procedures prohibited. We examined FY 2015 Medicaid HCBS waivers from across the nation to determine if and how states allowed restraint, restrictive interventions, and seclusion of people with IDD. In addition to detailing characteristics of the use of restraint, restrictive interventions, and seclusion across waivers, we explored whether allowance of these techniques differed depending on the waiver's target populations or on the degree to which the waivers provide mental and behavioral health services.
People with disabilities receive Medicaid through a number of options, including 1115 demonstration waivers, 1915(b) managed care waivers, 1915(i) HCBS state plan options, 1915(k) Community First Choice, and HCBS 1915(c) waivers. Medicaid HCBS 1915(c) are the largest providers of LTSS for people with IDD and were therefore the focus of this study. Medicaid HCBS 1915(c) waiver applications were obtained from the CMS Medicaid.gov website over a period of 11 months (May 2015 through April 2016). Our first inclusion criteria required that waivers be 1915(c); 1115 and 1915(b) waivers were excluded. Waivers were next required to serve only people with IDD, which includes developmental disabilities (DD), intellectual disabilities (ID), and autism spectrum disorders (ASD). Waivers for all other populations (e.g., older adults, people with HIV/AIDs or a physical disability), as well as waivers that were pending or inactive, were excluded. No age limitations were imposed; we examined waivers that provided services for both children (0 to 18) and adults (18+). Our final inclusion criteria required waivers to include the year 2015, the latest comprehensive data available at the time of the study. While this was most often the state FY (July 1, 2014, to June 30, 2015), a number of states used the federal FY (October 1, 2014, to September 30, 2015) or the 2015 calendar year (January 1, 2015, to December 31, 2015). We use the term FY for consistency. This methodology resulted in a population of 111 HCBS 1915(c) waivers for people with IDD from 46 states and the District of Columbia.
Use of Restraint, Restrictive Interventions, and Seclusion
In “Appendix G: Participant Safeguards” of the states' waiver documents, in section “Appendix G-2: Safeguards Concerning Restraints and Restrictive Interventions,” states detail whether the waiver permits the use of restraint, restrictive interventions, and/or seclusion. In subsection a, states note if the waiver prohibits or permits the use of restraints; subsection b addresses restrictive interventions, and subsection c addresses the use of seclusion. This information was utilized in the study to classify which waivers allowed restraint, restrictive interventions, and/or seclusion: Yes (1), No (0). (These procedures would not be permitted if the state prohibited their use; if the state permitted their use but the waiver prohibited it, these procedures would be prohibited for waiver participants.) Descriptive statistics were used to examine characteristics across waivers and states that allowed restraint, restrictive interventions, and/or seclusion.
We also utilized descriptive statistics to determine whether there were differences in the use of restraint, restrictive interventions, and seclusion depending on the target populations that the waivers served. This included the target age (children, adults, or both children and adults) and target group (IDD umbrella including DD, ID, and ASD; ID only; or ASD only) the waivers served.
Relationships With Mental Health Spending
A major argument for these procedures is that they address serious aggressive behavior (Luiselli, 2009), so we also wanted to explore whether there was a relationship between these procedures and waiver provision of mental and behavioral health services—specifically, behavioral therapy services or crisis services. We theorized that states that had higher projected spending on these mental and behavioral health services would permit restraint, restrictive interventions, and seclusion less often because they would have better mental health infrastructure in place. Therefore, we used descriptive statistics to explore waiver provision of behavioral therapy services or crisis services (projected spending per participant to control for waiver and population size) from Friedman's (2017) IDD waiver taxonomy and the provision of restraint, restrictive interventions, and seclusion. Behavioral therapy services were defined as those services “provided to individuals with emotional, behavioral, or mental health issues that result in functional impairments and which may interfere with community living” (Friedman, Lulinski, & Rizzolo, 2015, p. 261). Crisis services were those “designed to aid immediately in crisis situations. The services aimed at a crisis often noted that the goal was prevention of the individual being placed in a more restrictive institutionalized setting” (Friedman et al., 2015, p. 262).
Safeguards: Qualitative Characteristics
If states permit restraints, CMS requires that they “specify the safeguards that the State has established concerning the use of each type of restraint (i.e., personal restraints, drugs used as restraints, mechanical restraints)” (Centers for Medicare and Medicaid Services, n.d.-a, p. 88). Those waivers that permit restrictive interventions must do the following:
Specify the safeguards that the State has in effect concerning the use of interventions that restrict participant movement, participant access to other individuals, locations or activities, restrict participant rights or employ aversive methods (not including restraints or seclusion) to modify behavior. (Centers for Medicare and Medicaid Services, n.d.-a, p. 89)
Those waivers permitting seclusion must also specify the safeguards concerning each type of seclusion (Centers for Medicare and Medicaid Services, n.d.-a). These descriptions of safeguards were qualitatively analyzed using content analysis (Patton, 2002) to determine exactly which types of restraints, restrictive interventions, and seclusions states were permitting, and major and minor themes within each of the three categories. When interpreting these themes, it should be noted that our description of them only includes when states purposely noted these items; in these instances, it is not clear whether an absence of a description means states do not permit or prohibit the practice, or the state simply did not go into detail (Friedman & Rizzolo, 2016). For example, the majority of waivers noted that staff must be trained before implementing a restraint. It is likely all states have this requirement although not all of the waivers noted this in their description.
The safeguard characteristics were then quantified for each of the waivers—Yes (1), No (0)—which is a common technique to triangulate data sources (Bernard, 1996; Chi, 1997; Fielding, 2012; Jick, 1979; Sandelowski, Voils, & Knafl, 2009; Ward, 2007; Young, 1981), “allowing numbers to ‘speak' in order to enhance our understandings of data” (Ward, 2007, p. 10). Doing this allowed us to examine characteristics across waiver groups, particularly by target age and target populations, using descriptive statistics.
The overwhelming majority of HCBS 1915(c) waivers allowed restraint and restrictive interventions to be used on people with IDD in FY 2015. Restraint of people with IDD was allowed by 78.4% of waivers (n = 87); restrictive interventions were permitted by 75.7% of waivers (n = 84). A much smaller proportion of waivers (24.3%; n = 27) allowed seclusion to be used on people with IDD. Table 2 details the use of restraint, restrictive interventions, and seclusion by waiver.
Within waivers' descriptions of restraint, there were three types allowed: manual restraints, chemical restraints, and mechanical restraints. Table 3 details characteristics, including the percentage of each target category that permitted each type. Manual restraints, also referred to as physical restraints, were defined as a manual method of holding a person that restricts body movements or access to the body; all of the waivers that allowed restraint allowed manual restraint (see Table 3). Chemical restraint was often described as follows:
the use of behavior-modifying drugs prescribed and administered only in the situation of imminent threat of serious physical harm to prevent a participant from injuring self or others.…The administration of medication for chemical restraint must be ordered by a physician and the order must include specific instructions for when it may be used.… If it is used, the consumer cannot be left alone after administration and the affects [sic] must be monitored and documented, including intended and unintended effects, side effects, breathing, consciousness, and allergic or other adverse reactions. (Missouri DD Comprehensive Waiver, MO.0178.R05.03)
Mechanical restraints are mechanical apparatus used to restrict people's movement. Examples included “arm splints; bed rails; Bergeron safety belt; custom seat belt clips; E-Z-ON Vest with optional crotch straps; E-Z-on buckle guard; geriatric chair; helmets; jumpsuits; mitts; papoose board; safety cuffs; and waist/lap belt” (Connecticut Home and Community Supports Waiver for Persons with Autism, CT993.R00.00).
Waivers allowing restrictive interventions often permitted manual restraints, mechanical restraints, and chemical restraints within those interventions (see Table 3). More specifically, restriction of movement, including time-outs and/or prohibiting participants from going outside or inside, was the most frequently mentioned restrictive intervention. Approximately one quarter of waivers allowing restrictive interventions permitted negative and positive reinforcement techniques and loss of privileges such as visitors, property, or phone calls. Some waivers also allowed overcorrection, an aversive punishment (Iwata, 1987) where “a participant is compelled to repeat an action repeatedly” (Alaska's People with IDD Waiver (AK0260R0404)). Another type of restrictive intervention permitted was enhanced supervision, such as one-to-one staffing. A small number of waivers also allowed reparation of property and restitution (the restoring of the participants' property) and aversive or noxious treatment. An aversive device is
an instrument used to administer an electrical shock or other noxious stimulus to an individual to modify undesirable behaviors.… Aversive procedure means the contingent use of an event which may be unpleasant, noxious or otherwise cause discomfort to alter the occurrence of a specific behavior. (Connecticut's CT0993R0000 waiver)
Only two waivers allowed device tracking, and two allowed the modification of clothing.
Another characteristic was for waivers to specify which restrictive interventions were strictly prohibited. Approximately half of the waivers that permitted restrictive interventions prohibited aversive or noxious stimuli such as electric shock. Many waivers also noted prohibiting cruel and corporal punishments. Examples of these punishments included
subjecting participants to discipline that is out of proportion to the particular inappropriate behavior or is more than 24 hours after the provider learned of the behavior; subjecting the participant to verbal abuse, threats, or derogatory remarks; depriving the participant of food, visits or phone calls with family and professionals, clothing (unless otherwise indicated for clinical or safety reasons), sleep, or exercise; assigning exercise; forcing the participant to take an uncomfortable position; assigning strenuous or harsh work or work that is beyond the capacity of the participant; disciplining for toilet accidents; or depriving the participant of educational services. (Illinois Residential Waiver for Children and Young Adults with DD, IL0473R0103)
A proportion of waivers also prohibited the use of locked-door time-out. Contrary to the waivers mentioned above that allowed overcorrection, a small number noted prohibiting the use of overcorrection. Bitter liquids or spray mists were also prohibited by a fraction of waivers.
The majority of waivers that permitted seclusion of people with IDD did not provide comprehensive details about requirements regarding seclusion. However, some waivers required the room not be locked, while others mentioned the seclusion room should be locked or contained. Other requirements for seclusion rooms included sufficient lighting, sufficient ventilation, room to lie down comfortably, and being comforted or held by staff. (See Table 3.)
Other characteristics among descriptions of safeguards included the requirement that staff be trained on implementation of restraints (93.1% of restraint waivers, n = 81), restrictive interventions (96.4% of intervention waivers, n = 81), and seclusion (55.6% of seclusion waivers, n = 15).
Descriptive statistics revealed that waivers for both children and adults (84.4%) and waivers for children only (85%) allowed restraint more often than waivers for adults only (59.3%) (see Table 3). Waivers for both children and adults (84.8%) also allowed restrictive interventions more than waivers for children only (75.0%) and adults only (55.6%). Moreover, waivers for adults only (3.7%) were less likely to allow seclusion than waivers for both children and adults (31.3%) or waivers for children (30.0%). Despite differences across age groups, within each group, waivers were more likely to allow restraints and restrictive interventions than they were seclusion.
There were also differences across target populations. DD umbrella waivers allowed restraints more often (83.7%) than waivers for people with ID only (64.3%) or ASD only (54.5%). A similar characteristic was also present within restrictive interventions, with ASD waivers (45.5%) being least likely to permit restrictive interventions compared to ID only waivers (64.3%) or DD umbrella waivers (81.4%). Finally, DD umbrella waivers (29.1%) permitted seclusion most often when compared to ID only (0.0%) or ASD only (18.2%) waivers. In fact, no ID-only waivers permitted seclusion. (See Table 3.)
Relationships With Mental Health Spending
According to descriptive statistics, waivers that permitted restraint projected a lower average spending per participant on behavioral health services (M = $1,021.16, SD = $2,437.27) than waivers that prohibited restraint (M = $2,206.47, SD = $6,782.39) (see Table 4). Similarly, waivers that allowed restraint also projected spending less for the average participant on crisis services (M = $90.38, SD = $309.36) than waivers that prohibited restraint (M = $190.88, SD = $874.77).
Waivers that permitted restrictive interventions projected spending less per participant on behavioral health services (M = $1,029.22, SD = $2,467.87) than those waivers that prohibited restrictive interventions (M = $2,049.70, SD = $6,410.72). Waivers that allowed restrictive interventions also projected spending less on crisis services (M = $93.50, SD = $314.44) than waivers that did not permit restrictive interventions (M = $170.00, SD = $824.95).
Moreover, waivers permitting seclusion projected spending less per participant on behavioral health services (M = $873.83, SD = $2,040.19) than waivers that did not allow seclusion (M = $1,407.18, SD = $4,224.54). Waivers that allowed seclusion also projected spending less on average per participant on crisis services (M = $34.61, SD = $116.62) than waivers that prohibited the use of seclusion (M = $137.02, SD = $553.78).
Although restraint, restrictive interventions, and seclusion continue to be used on people with IDD, research has indicated that these techniques can pose a serious threat to the health and safety of people with IDD (U.S. General Accounting Office, 1999). Because of their prominence and the potential threat they impose, this study sought to determine the extent to which HCBS 1915(c) waivers, the largest provider of LTSS for people with IDD across the nation, permitted the use of restraint, restrictive interventions, and seclusion. Our study found that over 75% of HCBS waivers permitted restraint and restrictive interventions to be used on people with IDD in FY 2015, while a smaller proportion permitted the use of seclusion.
Of the waivers that permitted the use of restraint and restrictive measures, manual restraint was almost always permitted, and chemical and mechanical restraints were permitted nearly 70% of the time. Despite the widespread use of restraint and restrictive interventions, literature indicates that the use of these techniques may be harmful to both the person on which the intervention is applied and the person applying the intervention (Evans et al., 2003; Ferleger, 2008; Fisher, 1994; Mohr et al., 2003; Rakhmatullina et al., 2013; Tilli & Spreat, 2009; U.S. General Accounting Office, 1999).
Additionally, waivers that targeted adults only allowed restraints, restrictive interventions, and seclusion less often than waivers that targeted both children and adults or children only. More research is needed to determine why waivers for children with IDD, in particular, allowed restraints, restrictive interventions, and seclusion as much or more than waivers for adults or for both children and adults, as it seems counterintuitive given the harmfulness of these techniques. Perhaps these findings are related to the fact that there are a smaller number of waivers for children only (n = 27, 24.3%). Future research should explore states' reasons behind these decisions.
Waivers that targeted people with ASD allowed restraints and restrictive interventions less often compared to waivers that served the umbrella population of people with DD and ID- only waivers. Waivers that served the umbrella population of people with DD permitted seclusion more often than those that only served people with ID or ASD. Although the finding that waivers for people with ASD permit restraints and restrictive interventions less often is surprising given the history of aversive treatments for people with ASD (Lichstein & Schreibman, 1976), ASD waivers projected more spending on the average participant for behavioral health services (although not crisis services) than DD umbrella or ID-only waivers, suggesting that states are utilizing alternative treatment methods in lieu of these techniques.
While the majority of waivers permitted restraint, restrictive interventions, and seclusion, many particular practices were specifically prohibited, such as electric shock and other noxious stimuli, corporal punishment, and time-outs that included locking doors. These specific prohibitions convey an understanding of the ethical and physical implications of using particular types of restrictive interventions, arguably interventions that are the most frowned upon, especially with the United States' history of administering such treatments to individuals with psychiatric disabilities and/or IDD (Geller, 2006). Similarly, a small number of waivers required safeguards when implementing seclusion, such as not locking the door, sufficient air flow, and lighting.
Our findings also revealed relationships between provision of mental and behavioral health services, particularly behavioral therapy services and crisis services, and permittance of restraint, restrictive interventions, or seclusion. Waivers that permitted restraint, restrictive interventions, and/or seclusion all projected spending less per participant on behavioral health and crisis services than waivers that did not permit these techniques. More research is needed to determine the directionality of this relationship: Does states' provision of mental health services result in less need for interventions, or does a lack of interventions results in the need for more mental health services—or is the relationship bidirectional? In theory, as the claim is that these procedures address serious aggressive behavior (Luiselli, 2009), a better mental and behavioral health infrastructure should reduce the need for these aggressive and controversial techniques. Although determining whether the reduction in frequency of intervention techniques is due to a more successful mental and behavioral health infrastructure is outside the scope of this study, we believe it would be a fruitful avenue for future study. Given these techniques can produce negative outcomes, including serious harm, it is important that states take mental and behavioral health services into account when deciding if they shall permit or prohibit restraint, restrictive interventions, or seclusion.
This is especially pertinent as many professional organizations have denounced their use and in turn recommended alternative procedures for people with IDD displaying aggressive behavior. Two of the more prominent research and advocacy organizations on IDD—the American Association on Intellectual and Developmental Disabilities (AAIDD) and The Arc—produced a joint position statement denouncing the use of deprivation, physical restraint, and seclusion and noted that “these practices are dangerous, dehumanizing, result in a loss of dignity, and are unacceptable in a civilized society” (AAIDD, 2010). Instead, AAIDD and The Arc are proponents of the use of positive behavioral supports (AAIDD, 2010). Positive behavioral supports combine aspects of evidence-based practices such as applied behavior analysis (ABA) to address problematic behavior while working to increase independence, participation, and overall quality of life (Hieneman, 2015). For example, one study found organizational behavior management successfully reduced the use of mechanical restraints of people with IDD by 80% (Williams & Grossett, 2011). The American Psychiatric Nurses Association (2014) has also recommended that restraint and seclusion be used as a last resort for the minimum amount of time necessary and must never be used for staff convenience or to punish individuals for aggressive behavior. In addition, the United States Food and Drug Administration (FDA; 2016) has pushed for a ban on aversive restrictive intervention techniques because “they present an unreasonable and substantiated risk to public health.” In doing so, the FDA also proposes positive behavioral support as an alternative “for curbing self-injurious or aggressive behaviors” (U.S. Food and Drug Administration, 2016).
Future research and practice should work to identify other alternative methods that are safer, more effective, and less invasive on personal freedom than restraint, restrictive interventions, and seclusion. Because the majority of states permit the use of restraint and/or restrictive interventions in their HCBS waivers, it is important to have a plan in place to reduce and eventually eliminate their use quickly and safely. As identified by AAIDD and The Arc, positive behavioral supports are promising in addressing aggressive and problematic behavior. Professionals should work to eliminate the use of restraint, restrictive interventions, and seclusion.
When interpreting our findings, one limitation should be considered. Medicaid HCBS waivers are projections made to CMS rather than actual utilization data. Thus, our findings reveal where restraints, restrictive interventions, and seclusions are permitted rather than when they were actually utilized. However, waiver projections have been found to be a reasonably accurate proxy as they are based on previous years' utilization data (Rizzolo et al., 2013). Moreover, examination of FY 2010 HCBS waivers by Rizzolo et al. revealed findings similar to utilization analyses by Braddock et al. (2015). Future studies should examine how restraints, restrictive interventions, and seclusions are implemented in states that permit them in their HCBS waivers.
Another limitation of our qualitative findings is that our description of these themes only includes when states purposely noted these items; in these instances, it is not clear whether an absence of a description means states do not permit or prohibit the practices, or the state simply did not go into detail (Friedman & Rizzolo, 2016). Therefore, it is not necessarily clear if these techniques are always considered for emergency purposes only. Given these gaps, future studies should directly survey states to determine exclusion and inclusion criteria.
A study by Lulinski-Norris (2014) found 91% of the people with IDD who returned to state institutions in Illinois did so because of behavioral issues. “This failure suggests an inadequate community capacity to provide necessary intervention for situations in which an individual is experiencing a behavioral crisis” (Friedman et al., 2015, p. 258). Many professionals believe the use of interventions such as restraint and seclusion are largely ineffective in treating behavioral issues in people with IDD (Antonacci, Manuel, & Davis, 2008), leading one to question: Why do so many HCBS waivers permit their usage?
As they can produce negative outcomes, as well as come with a serious risk of harm and injury, application of these restrictive techniques is intended as a last resort after other forms of intervention techniques have been applied; however, our study revealed restraint, restrictive interventions, and seclusion were permitted by an overwhelming majority of states. For this reason, our study also examined the relationship between these techniques and provision of behavioral therapy and crisis services to determine if states were considering these services as preventative or alternative methods to avoid use of restraint, restrictive interventions, and seclusion. Thus, we wanted to know if states that projected more funding for behavioral therapy and/or crisis services allowed the use of these techniques less often. Our findings suggest a relationship between a waiver's projected spending on behavioral therapy and/or crisis services and their permittance of restraint, restrictive interventions, or seclusion.
However, problematically, especially given these findings, there is a lack of prioritization of mental and behavioral health services for people with IDD among waivers in general. For example, in FY 2013, only 1.2% of HCBS waiver funding was projected for mental and behavioral health services for people with IDD, including crisis services (Friedman et al., 2015). Since these services are aimed at preventing the (re)institutionalization of people with IDD, we would suggest waivers allocate more funding toward behavioral health and crisis services. These services may be crucial to reduce the use of restraint, restrictive interventions, and seclusion, as well as promoting the community integration of people with IDD.
Funds for this project were provided by a subcontract from the State of States in Developmental Disabilities project at the University of Colorado, School of Medicine. The State of States in Developmental Disabilities project is funded by the Administration on Developmental Disabilities in the U.S. Department of Health and Human Services (HHS). Research reported in this publication was also supported by the Council on Quality and Leadership (CQL). The content is solely the responsibility of the authors and does not necessarily represent the official views of the HHS or CQL and you should not assume endorsement.