Implementation of Self-Directed Supports for People With Intellectual and Developmental Disabilities in the United States

Abstract

Self-direction is an approach to human service delivery within long-term services and supports that aims to provide greater control for individuals with disabilities and their closest supporters. The purpose of this study was to understand the implementation of self-directed supports for individuals with intellectual and developmental disabilities. Researchers interviewed state developmental disabilities administrators in 34 of 42 states that currently operate self-directed service options and used qualitative analysis to arrive at a thematic map of the strengths and challenges currently experienced by state administrators. Common strengths identified by state administrators were increased opportunities for participant self-determination and improved relationships with support staff. Common challenges included restructuring case management relationships, as well as rulemaking and enforcement. Administrators’ suggestions for the future of self-direction focused on increasing program size and streamlining services using technology.

Keywords

self-direction consumer direction intellectual and developmental disability HCBS waiver services qualitative research

Individuals with intellectual and developmental disabilities (IDD) often require an individualized approach to human service delivery. It is estimated that there are approximately 4.7 million people with IDD living in the United States (Larson et al., 2017). Of these individuals, roughly 29% (1.4 million) are known to and served by state IDD agencies (Larson et al., 2017), the others live with families in the community and receive no support. People with intellectual disability (ID) have significant and lasting mental impairments that are often identified at birth or in early development and require assistance and support in many areas such as learning, language, self-care, making decisions, independent living, and finding and keeping employment. Developmental disability (DD) is a broader diagnostic category of conditions that include not only most people with ID but also individuals with substantial limitations that may derive from conditions other than ID (e.g., autism, cerebral palsy, and others). Typically, people with ID and people with DD receive the same types of services.

Since the 1980s, states have moved away from providing most services in large public-funded institutions toward community living through a variety of options such as Intermediate Care Facilities, in-home personal assistance, and home health (often funded through Medicaid state plan services), as well as Home and Community-Based Services (HCBS). In 2012, approximately 70% of Long-Term Support Services (LTSS) for individuals with IDD were provided in community-based settings (Eiken et al., 2014). In 1995, that figure was 30%. This dramatic expansion of community options for individuals with IDD contributes to the growth of general HCBS spending by state and federal governments to US$53 billion, a 49% increase since 2005 (Ng, Stone, & Harrington, 2015).

What is Self-Direction?

Self-direction upends the traditional paradigm of service provision by centering services around the person with IDD and their family, facilitating individual self-determination and shifting control over the decision-making process away from provider agencies and the state. Beginning with the Cash and Counseling and Robert Wood Johnson Self-Determination demonstration projects in the 1990s, policy experts and disability advocates deconstructed specific parts of traditional or “agency-directed” supports and created a robust system of policy innovations. In agency-directed supports, an eligible individual with IDD is served by an agency who is reimbursed by the government program for providing services to the participant. Self-direction breaks this service role into its component parts and centers planning and control over those components with the person with a disability and his or her family, as described in Table 1. These innovations were codified into standalone self-directed programs or more commonly as service options within 1115 or 1915 Medicaid waivers. Self-direction is responsive to the ideas of the self-determination movement. Participants should have the right to control their daily life activities and are often the best monitors of service quality, particularly when they receive training to do so (Nadash, 1998; Nadash & Crisp, 2005).

Table 1.

Core Components of Self-Direction.

Component	Description
Individual budgeting	Allocations from the funding authority that are based on individually assessed support needs.
Person-centered planning	Process in which participant, natural supports, and case manager understand the participant’s life goals, support needs and actions that will be taken by various people to meet those things that are important to and for the individual.
Employer authority	Authority to hire, train, maintain, and dismiss support workers, as well as to choose from different provider agencies
Budget authority	Authority to make decisions on what supports will be purchased and how much money to allocate to each support need.
Support broker	An employee of the participant who assists them with employer and budget authority and interfaces with providers and state officials.
Fiscal intermediary (FMS)	Private entities such as nonprofit, for-profit companies, and service agencies that assist the participant in complying with labor and tax laws and track spending for the implementing department.
Representative	A person, usually a family member, the participant authorizes to make decisions on their behalf (or in a collaborative supported decision-making manner).

An essential purpose of self-direction is facilitating the expression of self-determination. Self-determination speaks to the deeper goals of living a meaningful life and self-realization that are affected when individuals with disabilities engage in self-direction (Wehmeyer, 1999). Self-determination is expressed through individual actions within ecosystems (Abery & Stancliffe, 2003). For example, self-determination can be facilitated through a person’s drive for self-knowledge (micro), supportive interpersonal relationships (meso), legislation and court decisions (exo), and cultural beliefs about people with disabilities (macro). Self-direction facilitates self-determination through programmatic features that provide individuals with opportunities to control the aspects of their lives they consider to be important.

National Self-Direction Research

As self-direction has spread across the country, the national picture of self-direction has come into focus. The National Core Indicators (NCI) program gathers information from a sample of 11,569 individuals who receive developmental disability services through state systems in 26 states. In 2011, NCI reported that of the 10,722 individuals reporting, 95.8% (N = 10,274) used traditional options and 4.2% (N = 448) used self-directed supports (the reported range was between 0% and 12.5% of individuals using this service model). Sciegaj and colleagues’ (2016) national survey of self-directed programs presents the most comprehensive national study of self-direction, although it includes programs that support people with disabilities other than IDD. In this review, self-directed programs usually contained few participants and adhered closely to the textbook model of self-direction, with limitations on employer and budget authority. Walker, Hewitt, Bogenschutz, and Hall-Lande (2009) found significant variation across programs regarding target population, geographic scope, waiting lists, support brokerage, budget caps, funding source, and employment of family members. These conclusions are in accord with more recent policy reviews of self-directed programs (DeCarlo, Bogenschutz, Hall-Lande, & Hewitt, 2017). This study seeks to contribute to the study of self-direction in the United States by examining how program administrations experience implementation.

Outcomes of Self-Direction

For individuals with IDD, there are many studies demonstrating positive outcomes for people who participate in self-direction. In part, these outcomes are the result of the person with IDD knowing the direct support workers prior to their hire (Bogenschutz, Hewitt, Hall-Lande, & LaLiberte, 2010). People with IDD report stronger interpersonal connection and feelings of safety within support relationships when a family member or friend provides support, rather than a stranger (Matthias & Benjamin, 2008). Self-direction also promotes community integration, including less out-of-home placement, attending more clubs and community events, and retaining employment when compared with individuals using traditional supports (Caldwell, 2007; Caldwell & Heller, 2007; Gross, Wallace, Blue-Banning, Summers, & Turnbull, 2013; Heller & Caldwell, 2005; Vinton, 2010). Individuals participating in self-directed programs have consistently demonstrated improved physical and mental health when compared with those in agency-directed programs (Caldwell & Heller, 2007; Gross et al., 2013; Heller, Arnold, van Heumen, McBride, & Factor, 2012; Matthias & Benjamin, 2008).

Self-direction also influences the entire family system. Families of people with IDD report high satisfaction with self-directed services, likely the result of greater flexibility and control (Caldwell & Heller, 2003; Gross et al., 2013; Heller et al., 2012; Vinton, 2010). Moreover, families report that paid caregivers in self-directed systems are more responsive to the care recipient’s needs and listen to their wants and desires (Timberlake, Leutz, Warfield, & Chiri, 2014). Many families describe experiences with agency-directed direct support workers who were incompetent and unreliable and used self-direction to hire family members, friends, or paid caregivers who viewed support work as “more than just a job” (Gross et al., 2013, p. 94; Vinton, 2010). Family members of participants in self-directed programs report lower parenting stress, higher self-efficacy in caring for their child, improvements in overall family functioning, and being better able to cope with stressful issues as a family (Timberlake et al., 2014).

Research Questions

The authors used an inclusive definition of self-direction: a statewide program, waiver, or service option in which individuals could exercise employer or budgetary authority for at least one support. The study had three primary research questions:

Research Question 1: How do program administrators describe implementation successes of self-direction?

Research Question 2: How do program administrators describe the implementation challenges of self-direction?

Research Question 3: What do administrators perceive as future directions and innovations for self-direction?

Method

A qualitative research methodology was used for this study following a thematic analysis approach. Thematic analysis provides researchers with a flexible yet structured method for finding “repeated patterns of meaning” across the data set (Braun & Clarke, 2006, p. 15). The authors approached the thematic analysis from a realist method, reporting the meanings and experiences of participants without delving into the deeper social structures that inform those experiences. Furthermore, thematic analysis facilitates the inductive derivation of themes across many participants in a large data set, while maintaining the thick description necessary for rigorous qualitative analysis. All procedures used in conducting this study were reviewed and approved by the Institutional Review Boards at each author’s affiliated university.

Sample

The sample was drawn from a publicly available list of developmental disabilities program directors and HCBS administrators on the website of the National Association of Directors of Developmental Disabilities Services (NASDDDS). Researchers began by contacting each state’s director via email and phone, requesting information from the person or people most knowledgeable about implementation of self-direction in that state. If communication with the director was unsuccessful, the researchers contacted the HCBS administrators via email and phone. Interviews included disability services directors, deputy directors, state Medicaid agency coordinators, waiver administrators, self-direction administrators, and state policy analysts, representing a wide variety of administrators with a direct knowledge of how states are experiencing self-direction. The majority of the interviews conducted were one-on-one, although some states offered access to multiple individuals. In 18 states, interviews were conducted one-on-one, in eight states two individuals participated in the interview, and there were three participants from eight of the states. In total, interviews included 58 individuals.

As a first stage in data gathering, a document review was conducted. The authors searched the database of Medicaid waiver applications available through the Centers for Medicare and Medicaid Services (CMS) for all approved HCBS plans (also known as waivers) that included a self-direction option. The authors also searched each state’s disability services website to corroborate information from the CMS document review and to seek further information. The document review revealed that 42 states provided self-directed service options for individuals with IDD and a total of 102 specific self-direction programs or service options nationwide. The information from this document review was used to provide the researchers with basic information about each state’s approach to self-direction before initiating the interview phase of the project, as described below.

Interviews were conducted with participants from 34 of the 42 states that have implemented self-directed service options. Programs varied to a wide degree in size, years of operation, monetary allocations per individual, regulations on services and supports, and restrictions on participation (DeCarlo et al., 2017).

Data Collection

Semi-structured interviews

The semi-structured interview protocol was based on the results of the document review, an extensive review of the literature, as well as previous investigations of county-level administrators (see Hall-Lande, Hewitt, Bogenschutz, & LaLiberte, 2012). The interview protocol was developed by members of the research team and was reviewed and revised based on feedback from researchers at another university, as well as an expert review panel of staff from NASDDDS. Five state IDD system administrators participated in a pilot of the interview protocol. Revisions were made based on feedback from the pilot participants, clarifying question wording and removing questions deemed unnecessary.

There were 16 core questions in the finalized interview protocol, each with potential follow-up questions that the interviewer could pursue as appropriate. Questions included “how did you make the determination to include particular goods and services?” and “What is working well with self-directed supports in your state?” Phone interviews ranged from approximately 25 to 90 min. A description of the study, consent form, pre-interview questionnaire, and copy of interview questions were e-mailed to the interview participant prior to the interview. One member of the research team conducted all the interviews, reviewing consent information, reading each interview question verbatim, and asking follow-up questions based on participant responses. The interviews were audio recorded and transcribed by a professional transcription service, and a five-minute segment of each transcript was checked against the audio recording to ensure validity of transcription. The final transcripts became the texts for analysis.

Data Analysis

Transcribed interviews were analyzed using Atlas.ti 7.5 (2014) qualitative data analysis software, a commonly used program in qualitative social science. The researchers approached data analysis from an inductive perspective, allowing themes to emerge from the data. As described by Braun and Clarke (2006), the thematic analysis proceeded along six sequential phases: (a) familiarizing with the data set, (b) generating initial codes, (c) searching for themes, (d) reviewing themes, (e) defining and naming themes, and (f) reporting data. One member of the research team conducted the coding and thematic analysis, consulting with a peer reviewer at the end of each of the three passes of coding and the entire research team after the coding process was complete. The peer reviewer reviewed each phase of coding for consistency, and worked with the primary coder to identify, review, and name themes. At the end of coding, the entire research team reviewed the themes and established a shared meaning that best reflected the narratives of participants based on a series of dialogs. The themes were organized into a thematic map which was refined through consultation with the research team to ensure homogeneity within each theme and heterogeneity between themes. The analysis contained within this article used cooccurrence counts as a guideline for the prevalence of themes within the data set. Thus, the analysis is limited to the most prevalent themes that answer each research question, while attending to exceptional or divergent cases. Methodological journaling related to coding and peer review helped to ensure the dependability, confirmability, and trustworthiness of the final research product.

Results

Results are reported based on our three research questions, as noted above. We begin with an examination of the strengths of self-direction, as perceived by the state IDD program administrators, followed by results related to perceived challenges and future opportunities. A graphical overview of the main findings may be viewed in Table 2.

Table 2.

Themes and Subthemes in Administrator Interviews.

Research question	Themes	Subthemes
Strengths	Opportunities for self-determination	Flexibility, individualization, decision-making, responsibility
Strengths	Improved support relationships	Controlling who comes in the home, consistency of support relationships
Challenges	Restructuring case manager relationships	Oversight of participant spending, documentation, recruitment
Challenges	Public stewardship	Rulemaking and enforcement, public perception of fraud
Future directions	Increasing program size	Administrator as change agents, selective incentives
Future directions	Using new technology	Electronic billing and records, Supports Intensity Scale, budget algorithms

Strengths of Existing Programs

Opportunities for self-determination

A successful program, reported by program administrators, was a program whose components were functioning in the way they were designed. Primary among these components was the opportunity for individuals with IDD and their family members to express self-determination. Opportunities for self-determination were a multifaceted construct with multiple subdomains, including flexibility, individualization, decision making or choice, and personal responsibility.

Compared with traditional supports, self-direction was viewed as providing “flexibility for consumers to meet their changing needs.” Self-direction “really opens the door to that menu of choices, [so] it’s really very comprehensive” in how individuals can meet their support needs. This flexibility was also indicative to administrators of another important aspect of self-determination, the individualization of supports, wherein broad classes of service types are personalized into the things individuals need or would like to do to meet their support needs. In this way, opportunities for self-determination are facilitated by people with IDD, engaging in choice and decision making in employer and budget authority. Administrators spoke positively of the “quality of life” improvements that individuals experience when they “control who provides the service, when they provide it, and how it’s provided to them.” The importance of providing “as much choice as you can” to individuals was emphasized across state administrators.

Within the administrator interviews, choice was often mentioned alongside control; in particular, control over “who comes into their home” was seen as a vital component of self-direction. HCBS were conceptualized as a “continuum of choices” ranging from full self-direction to agency direction. Administrators emphasized the importance of choosing to engage in self-direction, as even for current participants “there will always be a time where [self-direction] will no longer work for a family.” The option for self-direction, however, created “more of a systems change” even for “people who may be in traditional services knowing that they do have a choice. . .[that they] should have the right to say when they eat, who they live with. . .even if they are in traditional services,” according to an administrator in the Northeast.

Opportunities for self-determination were often described as contingent on the responsibility demonstrated by people with IDD and their family members. An administrator from the Southwest reported having to emphasize “what self-direction means [to families] that with a lot of choice, a lot of freedom, a lot of flexibility comes responsibility.” Being an “employer of record,” for an administrator in the Midwest, “requires somebody who’s well-organized, able to submit timesheets, track down resources, those kinds of things.” Ultimately, “a lot is in the hands of our participants.” Administrators were partially ceding their planning and management authority, as well as the authority of the “contracted entities providing traditional services” to individuals and families participating in self-direction. Administrators emphasized that their experiences with people with IDD had been positive, as an administrator from the Southeast said, “the more responsibility and ownership on individuals. . . the less issues you seem to have.”

Improved support relationships

Administrators reported that relationships between paid direct support workers and people with IDD became stronger and fostered greater satisfaction in self-direction. People with IDD derived satisfaction from the hiring process itself, being able to control who comes into their intimate environment, and finding a support worker who truly knows them. The process of hiring a family member or friend as a support worker was described by an administrator in the Northwest as bringing “folks that they’re familiar with and who are familiar with them. . .into their circle of support.” Moreover, administrators reported that people with IDD derived satisfaction from providing payment for support work that family members or friends would otherwise have provided for free. An administrator in the Midwest noted people with IDD were “more apt to ask for help when they needed the help than they did before when [the family member] wasn’t a paid provider.” Even when agency support workers were hired, the ability to build “a long-standing relationship with a traditional provider” was viewed as a significant benefit because of the extensive knowledge the support worker acquires about the participant over time.

When people with IDD and their closest supporters exerted control over the employment process, administrators reported that they were also able to bring greater consistency into the support relationship. Many contrasted the support relationships in self-direction with unsatisfactory relationships within traditional supports. People with IDD valued being “less at the whims of an external agency,” according to an administrator in the Southwest. Another administrator in the Midwest noted that in many rural areas, there are “not qualified providers. . .that can meet that level of need better than what the parents and families can provide.” For administrators, people with IDD who “were fairly difficult in the traditional environment” or “who’ve had real trouble getting along with their staff in the past, we’ve seen that flip around now that they. . . control the recruitment and hiring process,” in the words of an administrator from the Northeast.

Administrators displayed high sensitivity to the negative support relationships reported by people with IDD. State administrators solicited feedback through formal surveys of participants, meetings with disability advocates, fielding individual complaints during phone calls or training sessions, as well as interacting with case managers and providers. When administrators interfaced with people with IDD and their families, participants who were satisfied with self-direction stated that “traditional supports [were] just not cutting it for us [due to] low quality, high turnover rate, whatever it may be,” described an administrator from the Midwest. For new participants, multiple administrators often reported that younger families preferred self-direction and were not interested in traditional supports because of “more bureaucracy, you don’t control staffing, you don’t control scheduling, you have to compromise more things in life,” in the words of an administrator from the Northeast.

Challenges in Self-Direction

Restructuring case manager relationships

Self-direction restructures the relationships between people with IDD and the people who support them in the service delivery system; as such, administrators “don’t have the same level of oversight that we would” working with an agency in traditional supports. In the words of an administrator in the Southeast,

In a traditional model service delivery system. . . if we purchase an hour of in home services and an agency delivers that hour of in home services, we [can] go into the agency’s office and monitor the documentation, see that the goals of the [individual support plan] were maintained, make sure that the intent of the service had integrity.

In self-direction, administrators relied more heavily on the people with IDD and their family members to engage in administrative tasks that had previously been assigned to formal provider agencies and state administrators. Moreover, administrators have had to adapt to prevent improper spending and threats to health and safety. Bringing family members “on board,” according to administrators, involved emphasizing to family members that the autonomy and choice in self-direction entail “responsibility and accountability [which has] been a challenge for some of our participants,” according to an administrator in the Southwest. Administrators often emphasized that although fraud was rare in self-direction, as reported by an administrator in the Southeast,

Sometimes families will do things because they don’t understand the program. . . Medicaid has rules and regulations that we have to follow and that they have to follow. Sometimes. . . the bigger picture. . . [is] difficult to impress upon people.

Documentation of service by the family members was identified as a solution; however, administrators described family members becoming overwhelmed by difficult, time-consuming, and cumbersome documentation requirements. The “volume of paperwork” that accompanies self-direction was described as a barrier by administrators, as it “takes away from other things that people would like to spend their time on,” as stated by an administrator from the Northeast.

Administrators identified the individualized nature of service delivery in self-direction as a challenge that well-trained case managers could mitigate through monitoring and quality assurance. However, self-direction requires that case managers “rethink how they approach work” with individuals with IDD. Alongside philosophical changes of self-determination, the complexity of the self-directed model of service for case managers was also identified as a challenge. Complexity was mitigated by having a case management staff who was experienced in self-direction, a resource that takes time to develop. The lack of an adequate number of well-trained case managers was a challenge mentioned by many state administrators, in some places because demand for self-direction has outpaced supply of case management.

Public stewardship

Another consistent theme in the experiences of administrators was the view that self-direction has transformed from a flexible, open program to one with an increasing number of rules and regulations. Some administrators described a reactionary process by which rules were created as problems with incorrect spending arose, or as one administrator from the Northwest puts it, “it’s like we opened the barn door before the fence was up.” Other administrators described rulemaking a “balancing act. . .to maintain flexibility and self-determination” and “get people the breadth of services [they] require” while staying “within those federal rules.” When determining which supports were allowed, administrators often mentioned the relationship of the support with the individual’s plan of care or medical necessity.

The clarity that administrators reported achieving in rulemaking varied widely. Some administrators spoke of being so prescriptive with rules that “put in place higher standards than we need. . .making things more inflexible than they need to be” for participants. Many administrators related stories of perceived egregious spending, including the “Cadillac” of ski passes, a trip to Europe, and new televisions—that at the time were either not prohibited by existing rules or the existing rules were ambiguous. Ambiguous cases were particularly challenging for administrators, as laborious decisions contributed to overwork of public administrators and difficulty achieving consistent enforcement across the entire state. Even in states where regulations were not identified as challenges, families were reported as less likely to “wade around provider manuals” where regulations were explicated.

Administrators across states were largely in agreement that while fraud did occur in self-direction, the rate at which it occurred was no different than traditional supports or other social welfare programs more broadly. The perception that fraud is rampant or at least more likely in self-direction was one that administrators described having to battle in their interactions with family members, providers, and other state administrators. As one administrator in the Northeast described,

This widespread belief, for which I’ve never seen any actual supporting evidence, that fraud is rampant in participant direction. . .we hear that all the time. . . I think it’s almost offensive. . .the idea that if it’s not provider or government controlled, that people will steal from you. It’s just, to me, that’s reprehensible.

Future Directions

Increasing program size

Administrators consistently reported the desire to increase program size. In multiple states, they described the importance of having specific staff on the regional level to promote self-direction and increase adoption during the early stages. Because self-direction is described as a “cultural shift,” administrators had to engage with providers and show how self-direction was “different from the way we did business previously.”

Another administrator from the Southwest used positive financial rewards to incentivize area agencies to promote self-direction and grow the size of the program:

If agencies had traditional services for individuals and those families converted to [self-direction] and those budgets were lower, we allowed the area agency to use the gaps in funding. So if the traditional service say costs $75,000, but then a family went into a [self-directed] arrangement and it cost $50,000 that $25,000, we allowed them to assign to other people that maybe needed additional service or services that were being provided that an agency wasn’t able to bill on. . .We really created these financial incentives for the agencies to be able to really help promote [self-direction].

Using new technology

While many administrators reported working on electronic billing, only a few administrators described currently operating systems and the coordinating effect electronic billing had on service delivery. Because authorizations for budgetary decisions often needed to be approved by the case manager or regional authority, electronic budgeting allowed administrators in these states to do so with a minimum of paperwork. “When [the case manager] hits the submit button, that should go through automatically, without review from anybody. The computer system already knows they’re within budget,” reported an administrator from the Southeast. Another administrator in the Midwest described that “a case manager can. . . bring up all of the expenditures, the employees, how many hours they worked, what they were paid, any goods and services that were purchased, anything that was placed into savings. It’s real time.” When an individual with IDD desired to purchase an unusual good or service, case managers could provide the necessary information for the person to make an informed decision based on the present status of their budget.

In addition to approving budget changes during the service year, electronic budgeting assisted with the annual budgetary review process. Case managers, according to an administrator in the Midwest,

. . . click on a button and say, “You only used 20 hours last month when you were authorized for 100. What’s going on?” Or, they can look at it historically because all the historical information is held [and] say, “We had you authorized for 100 hours of service last year but you were consistently only using 50. Maybe we drop that down to 50?”

After the participant and case manager agreed on the budget for the next year, electronic billing systems allowed regional and state authorities to approve budgets automatically, reducing the overwork that comes with manually processing “thousands” of paper applications.

Another trend in the interviews of administrators was the increased adoption of budget algorithms and standardized assessment protocols like the Supports Intensity Scale (SIS) or Inventory for Client and Agency Planning (ICAP). While only a few administrators reported using the SIS on a statewide basis, many others reported piloting its use in self-directed programs or creating their own standardized assessment protocol. Administrators described the SIS and ICAP standardized assessments as helping to making sure

we have. . .the right services at the right time, because right now we have people who are. . .their needs are low and they have high budgets and some people whose needs are high and they have low budgets,

according to an administrator from the Southeast. Alongside standardized assessments, the use of regression-based budget algorithms contributed to the predictability of budgets. They not only helped with cost containment but also potentially led to counter-advocacy and lawsuits from advocates.

Discussion

Strengths of Self-Direction

The primacy of opportunities for self-determination in the responses of administrators was unsurprising, given the improvements in self-determination, autonomy, and choice demonstrated in the self-direction evidence base (Caldwell, 2007; Gross et al., 2013; Vinton, 2010). Administrators conceptualized self-determination, similar to Abery and Stancliffe (2003), as having the flexibility to meet life’s changing needs, the ability to engage in decision making and choice, as well as the individualization of supports. Self-determination was also defined by administrators, in part, as requiring responsibility by people with IDD and their family members. The importance of accountability or responsibility in self-direction is well-grounded in previous studies of program administrators on the state and county level (Hall-Lande et al., 2012; Walker et al., 2009). Furthermore, Nerney’s (2005) value-based definition of self-determination includes responsibility as a core value of self-determination, alongside freedom, authority, support, and confirmation.

Increased individual and family satisfaction with supports is also a commonly reported outcome of engaging in self-direction (e.g., Caldwell & Heller, 2007; Mirza & Hammel, 2009). In addition, hiring family or friends as direct support workers is associated in the literature with greater satisfaction with the support relationship and the supports received (Bogenschutz et al., 2010). Caregivers and guardians report that a common challenge in HCBS programs is finding a consistent, responsive, and caring provider, particularly for the intimate task of in-home supports, an issue that is mitigated by employer authority in self-direction (Gross et al., 2013; Timberlake et al., 2014). It is telling that these effects are reported by administrators to be instrumental to the success of self-direction.

Challenges in Self-Direction

While self-direction was viewed as providing consistency and satisfaction, administrators also emphasized the importance of oversight of family and participant spending. This theme is consistent with previous studies of administrator experiences with self-direction that highlight a concern for potential fraud or misuse of funds and the desire to avoid public scandal (Infield, 2005; Simon-Rusinowitz et al., 2009). Program administrators may fear that greater flexibility may tempt people with IDD to divert money away from necessary supports (Sciegaj, Mahoney, & Simone, 2008). As Simon-Rusinowitz et al. (2002) stated, “even if fraud and abuse are very rare, one single case can cause so much damage” (p. 108). As a result, administrators create documentation and planning requirements that people with IDD describe as challenging (Gross et al., 2013). Notably, the results of this study demonstrate that the challenges of engaging in self-direction are well-known among administrators.

Many administrators understood the barrier that documentation posed and demonstrated multiple unique approaches to this administrative burden. Administrators in this study emphasized how critical well-trained and engaged case managers were to successful implementation of self-direction. Case managers were often tasked to recruit new program participants, consistent with the model of self-direction (Crisp, Doty, Smith, & Flanagan, 2010). Across all states, administrators described a desire to increase program size, and as a result, the recruiting component of the case manager relationship took on added significance. Studies of both county-level (Hall-Lande et al., 2012) and state-level (Walker et al., 2009) administrators echo the importance of having “buy-in” from case managers, and that dissatisfied or negatively disposed case managers can limit access to self-direction by simply not mentioning it to potential participants. Moreover, case managers who harbor concerns or misconceptions about self-direction may not present accurate information out of fear for their clients’ safety (Crisp et al., 2010). While states varied in their approach to building a competent case management network, administrators were clear in the centrality of case managers to successful implementation.

Administrators emphasized the importance of rulemaking in the process of implementation, particularly as program size increased. This result mirrors that of the previous nationwide study of self-direction administrators which found that programs decreased in flexibility as they transitioned from pilot projects to statewide implementations (Walker et al., 2009). In addition, the reactive process of rulemaking described in this study is similar to the process described by Walker and colleagues as creating the “rules of the road [when] there weren’t too many” (p. 8). Consistency is a challenge in the dynamic environment of a nascent program, and this study demonstrates that the administrative challenges in rulemaking, education, and enforcement continue well after the initial rollout to statewide implementation.

The challenges highlighted in this study may help to explain the lack of growth in the number of people with IDD engaging in self-direction. In 2006, 5.4% of people with IDD receiving HCBS were engaging in self-direction (Prouty, Smith, & Lakin, 2007), and that number remained relatively unchanged in 2011 (National Core Indicators, 2011). The stasis in self-direction persists despite increased adoption of self-direction by states (Walker et al., 2009). The challenges that administrators proposed offer a partial explanation for the lack of growth. Individuals with IDD may not choose self-direction if the rules are cumbersome and inconsistently applied, the documentation is overwhelming, and case managers are not recruiting new participants. Future directions for self-direction research should seek further explanation on why more individuals with IDD are not choosing self-direction and what policy innovations states can use to engage more people in self-directed supports.

Future Directions for Self-Direction

While only a handful of states were using the SIS statewide to evaluate participant needs in self-directed programs, more administrators reported that the SIS was in use for other populations or that the state was piloting the SIS for eventual statewide implementation. The SIS has been validated across multiple studies (Wehmeyer et al., 2009; Weiss, Lunsky, Tassé, & Durbin, 2009) and presents administrators with a standard way of assessing participant needs designed to dovetail with a person-centered planning process (American Association on Intellectual and Developmental Disabilities, 2008).

The use of the SIS is associated with the utilization of budget algorithms in the literature, and there were some states that conformed to this approach (Smith & Fortune, 2008). However, given that many states are still working on adopting the SIS on a statewide basis, budget algorithms were often used with other assessment tools. Budget algorithms reflect a focus on individualization of supports which is important in self-determination theory and the best practices literature. Severance and Campbell (2008) argue that the use of budget algorithms helps to ensure fair and equitable distribution of support dollars. However, the use of budget algorithms may make the system resistant to change, reducing the likelihood of expanding opportunities for self-determination (Crisp et al., 2010; Moseley, Gettings, & Cooper, 2003).

The relatively small group of states identified as using electronic billing represents a slower implementation than recommended by previous studies of self-direction, in which information technology systems were seen as critical to best practices (Walker et al., 2009). Electronic billing considered best practice for participant direction with populations other than IDD, including veterans (Schoeps, 2015), and the use of electronic billing in Medicaid services has a strong evidentiary basis (Dennis & Blanchard, 2013).

Limitations and Conclusions

Although implementations of self-direction differ significantly from state to state, the experiences of administrators coalesced around a set of common themes. Strengths of self-direction derive from increased opportunities to express self-determination and improvements in support relationships. Challenges of administering self-directed programs derived from documentation, quality assurance and recruitment via case managers, and rulemaking and enforcement that balanced individual medical needs against administrative strictures. Future directions pointed toward the use of technology to streamline services.

As administrators are central to the processes of program implementation, their experiences represent an insider’s perspective of the implementation of self-direction. It is important to note that this study did not compare administrator perspectives on implementation with those of people with IDD, families, or service providers, and thus, represents only a partial understanding of self-direction. Moreover, administrators may have focused on program strengths or goals and minimized issues that may reflect poorly on the state. While the sample included 80% of the states that have implemented self-direction for individuals with IDD, administrators who elected to participate may hold different views of self-direction from those who declined to participate. Most importantly, the Medicaid policy landscape is always evolving, and this study should be understood as a snapshot in time.

The incredible diversity in program design between states represents a fundamental challenge for future investigations of self-direction. As the national picture of self-direction comes into focus, more complex research questions can be answered that extend existing best practices by comparing program designs across states and across other nations’ self-directed programs. Furthermore, studying states that have not implemented self-direction may provide information on what environmental factors facilitate and inhibit the growth of self-direction.

Footnotes

Acknowledgements

We are also grateful to The National Association of State Directors of Developmental Disabilities Services for their support and consultation on this research study.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Development of this article was supported by Grant #90RT5019-01-01 to the Research and Training Center for Community Living from the National Institute on Disability Independent Living and Rehabilitation Research, U.S. Department of Health and Human Services. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not therefore necessarily represent official National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) policy.

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