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From Policy to Practice: Socio-Ecological Challenges in Implementing the Home and Community Based Settings Rule

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Title: From Policy to Practice: Socio-Ecological Challenges in Implementing the Home and Community Based Settings Rule
Language: English
Authors: James B. Gould (ORCID 0000-0002-7614-3169)
Source: Journal of Disability Policy Studies. 2025 36(1):29-39.
Availability: SAGE Publications and Hammill Institute on Disabilities. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com
Peer Reviewed: Y
Page Count: 11
Publication Date: 2025
Document Type: Journal Articles
Reports - Evaluative
Descriptors: Adults, Intellectual Disability, Home Programs, Community Services, Inclusion, Federal Regulation, Normalization (Disabilities), Individualized Programs, Barriers
DOI: 10.1177/10442073241289081
ISSN: 1044-2073
1538-4802
Abstract: The 2014 U.S. Centers for Medicare and Medicaid Services "Settings Rule," which took effect in 2023, restricts Home and Community Based Services funding for adults with intellectual disabilities to small integrated settings and person-centered supports. The Settings Rule responds to the fact that community services, mandated by the Americans with Disabilities Act (ADA) and the Supreme Court Olmstead ruling, while integrated physically, often operate as institutions. The Settings Rule is meant to create integration and individualization. I argue that the regulation cannot, on its own, accomplish these goals. The deinstitutionalization movement has had mixed outcomes--and without change across multiple socio-ecological systems, the Settings Rule will also deliver mixed results.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1471790
Database: ERIC
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  Value: <anid>AN0185232102;9wi01jun.25;2025May20.02:58;v2.2.500</anid> <title id="AN0185232102-1">From Policy to Practice: Socio-Ecological Challenges in Implementing the Home and Community Based Settings Rule </title> <p>The 2014 U.S. Centers for Medicare and Medicaid Services "Settings Rule," which took effect in 2023, restricts Home and Community Based Services funding for adults with intellectual disabilities to small integrated settings and person-centered supports. The Settings Rule responds to the fact that community services, mandated by the Americans with Disabilities Act (ADA) and the Supreme Court Olmstead ruling, while integrated physically, often operate as institutions. The Settings Rule is meant to create integration and individualization. I argue that the regulation cannot, on its own, accomplish these goals. The deinstitutionalization movement has had mixed outcomes—and without change across multiple socio-ecological systems, the Settings Rule will also deliver mixed results.</p> <p>Keywords: integrated services; intellectual disability policy; person-centered services; settings rule; socio-ecological systems</p> <p>Historically, adults with intellectual and developmental disabilities (IDD) lived with their families in the community. By the mid-20th century many were housed in state-operated centers that separated them from society. The 1960s began a shift from segregated institutions to integrated settings where they could live as active citizens. Housing and work in the least restrictive environment became national policy. In 1965, when Medicaid was established, funds were only available for institutions, but in 1981, Congress passed the Home and Community Based Services (HCBS) Waiver Program allowing states to establish community programs. Despite their integrated location, however, these often operate in institutional ways.</p> <p>My adult son David has IDD and requires significant support in activities of daily living. He receives community day services and lives in a four-person group home. [<reflink idref="bib18" id="ref1">18</reflink>] point out that there is often a gap between policy goals and practice in residential and vocational services (p. 349). In theory, individuals should not be segregated in disability-specific settings but integrated within mainstream society; they should not receive standardized services based on what agencies choose but individualized services that meet their personal wants and needs. In practice, however, integration and individualization are often absent, especially for higher need individuals. David's vocational and residential service array is segregated and standardized.</p> <p>[<reflink idref="bib19" id="ref2">19</reflink>] notes that much of what is considered <emph>de</emph>institutionalization is in fact <emph>trans</emph>institutionalization—moving people from one institution to another. In terms of choice and inclusion, there are no significant differences between institutional and community settings. "Instead of community integration, many people with IDD have merely become physically relocated into the community" (p. 121). The "Settings Rule" aims to correct this deficiency.</p> <p>The Centers for Medicare and Medicaid Services "Settings Rule" (SR) restricts HCBS funding to small integrated settings and individualized supports. It responds to the fact that community services, while integrated physically, often function institutionally. Settings Rule is meant to create social inclusion and service customization, but—I argue—it cannot, on its own, accomplish these goals. The deinstitutionalization movement has, in general, had mixed outcomes, and without change across multiple socio-ecological levels, SR will also deliver mixed results. Systemic overhaul is needed to create an infrastructure that supports inclusion and choice ([<reflink idref="bib19" id="ref3">19</reflink>], p. 112). While my analysis pertains to the United States, its lessons apply to other nations as well. My interest is personal, professional and academic: I serve on the governing board for David's agency and on an Illinois advisory council; I advocate locally for disability causes and, as an emeritus professor, publish in philosophy and disability studies.</p> <hd id="AN0185232102-2">The Settings Rule</hd> <p>Settings Rule was finalized in 2014, with final compliance required in 2023. The two features of institutions are segregated and standardized services, and the contrasting qualities of community care are integrated and individualized services. SR directs all residential and vocational settings to meet certain requirements of inclusion and choice—only these are eligible for HCBS funding.</p> <p> <emph>In location</emph>, service settings must be <emph>integrated</emph>. They must be situated in and support full access to mainstream communities. SR presumes certain settings to be institutional: those that provide in-patient treatment, are located on the grounds of institutions or have the effect of isolating individuals from the community (by being designed for people with IDD, by providing activities on-site rather than in community facilities and by limiting interaction with the public). Farms and campuses are presumed to be institutional; apartments and homes in residential neighborhoods are not. Sheltered workshops are considered institutional; community employment, recreation and volunteer sites are not. The key criterion is whether the setting isolates individuals from the broader community ([<reflink idref="bib39" id="ref4">39</reflink>]).</p> <p> <emph>In nature</emph>, service design and delivery must be <emph>individualized</emph>. Traditional approaches are system-centered and uniform; services are based on what is available among group homes and work centers, and people are fit into agency structures rather than services tailored to their needs and wants. In person-centered planning—by contrast—the individual and their family control the supports they obtain. Residences must promote individual autonomy rather than a life dictated by staff; this includes privacy, control of daily schedule, access to food and freedom to host visitors. Day services must facilitate choice of employment or nonwork activities in the community and individuals must be able to set their own schedules ([<reflink idref="bib39" id="ref5">39</reflink>]).</p> <p>These are the <emph>requirements</emph> of SR. Its <emph>rationale</emph> is based on assumptions that guide current disability policy ([<reflink idref="bib9" id="ref6">9</reflink>]). The first is an ecological understanding of IDD as an interaction between person and environment. The second is a focus on well-being as a multidimensional phenomenon comprising common core domains like self-determination, relationships and inclusion. The third is an emphasis on individualized supports that act "as a bridge between the present state of functioning ('what is') and a desired state of functioning ('what could be')" ([<reflink idref="bib9" id="ref7">9</reflink>], p. 288). These beliefs inform SR.</p> <p>The ADA's "Integration Mandate" requires that services be provided in the most integrated setting appropriate to a person's needs. The Supreme Court <emph>Olmstead</emph> ruling declares states in violation if they administer programs in a way that excludes service users from society. According to the Department of Justice, which enforces the Integration Mandate, segregated settings include (a) congregate settings populated by individuals with disabilities; (b) congregate settings that regiment daily activities, lack privacy or autonomy, limit visitors as well as participation in community events and individual control over activities; and (c) settings that provide daytime experiences primarily with other individuals with disabilities ([<reflink idref="bib40" id="ref8">40</reflink>], p. 11). States must offer services where people can live and work in the community and have choice in daily activities.</p> <p> <emph>Olmstead</emph>, which ruled that unnecessary isolation of people with IDD constitutes discrimination, responded to the fact that many states refused to enact ADA mandates. <emph>Olmstead</emph> encompasses more than moving individuals out of institutions—it also requires the resources they need to access the community and achieve person-centered goals. <emph>Olmstead</emph>-related litigation—like the <emph>Ligas</emph> lawsuit in Illinois—have moved states toward compliance. [<reflink idref="bib20" id="ref9">20</reflink>] concludes that progress toward implementing the Integration Mandate and <emph>Olmstead</emph> "has been slow and uneven" (p. 56). To address this, SR cuts funding for community services that, while meant as an alternative to institutions, remain institutional.</p> <hd id="AN0185232102-3">Socio-Ecological Barriers to Settings Rule Implementation</hd> <p>Socio-ecological theory, developed by [<reflink idref="bib8" id="ref10">8</reflink>], posits that life experience is shaped through complex interactions between individual persons and their social environments. He imagines an individual at the center, with the set of nested systems that shape their functioning as concentric circles moving outward. The <emph>microsystem</emph> is the immediate setting in which the person lives (home, family, school, work, faith community); the <emph>mesosystem</emph> is the relationships between elements in the microsystem; the <emph>exosystem</emph> contains settings where the individual is not a direct participant (neighborhood, government, social networks and mass media); the <emph>macrosystem</emph> consists of the broad social context (cultural assumptions, economic and educational institutions, political and legal systems). Immediate settings and larger contexts depend on each other, and changes in one part cause changes in another.</p> <p>A more precise framework, and the one I will employ, is an adapted ecological systems model with five levels developed by [<reflink idref="bib55" id="ref11">55</reflink>]. The <emph>individual</emph> level consists of personal traits of the person with IDD: mood, communication, friendliness and self-motivation. The <emph>interpersonal</emph> level contains relationship networks: family members, paid staff, disabled peers and nondisabled people. The <emph>organizational</emph> level involves the culture of service agencies and other groups (healthcare providers and businesses). The <emph>community</emph> level incorporates residential arrangements, transportation systems, work and leisure opportunities as well as public attitudes to people with IDD. The <emph>socio-political</emph> level includes laws regarding disability inclusion, histories of service delivery, state bureaucracies and budget appropriations. These nested levels shape the lived experience of adults with IDD. A systems perspective suggests that SR alone is unlikely, without comprehensive change across multiple ecological levels, to bring about integrated and individualized services.</p> <hd id="AN0185232102-4">Individual Barriers</hd> <p>Individual barriers to implementing SR consist of personal characteristics of adults with IDD. Limited executive function (cognitive skills that enable control of thoughts, emotions and actions) and adaptive behavior (practical, social and communication skills necessary to meet the demands of everyday living) are defining features of IDD and significant determinants of social inclusion and individual empowerment.</p> <p>Adults with differing degrees of support needs experience differing integration and self-determination. Individuals with higher support needs experience more limited community presence ([<reflink idref="bib35" id="ref12">35</reflink>], p. 15). People with multiple, complex support needs benefit least from policy initiatives, [<reflink idref="bib18" id="ref13">18</reflink>] assert: "those with significant cognitive and/or communication impairments are particularly at risk of being denied choice and control in their lives" (pp. 349–350). Place of residence correlates with level of IDD—as living arrangements become less restrictive, integration and individualization increase. Adults with milder IDD in supported living have more independence and inclusion, while those with severe impairments in supervised settings have less ([<reflink idref="bib10" id="ref14">10</reflink>]; [<reflink idref="bib60" id="ref15">60</reflink>]). Special education trains those with milder IDD to live in a semi-independent manner. This leaves adults with more severe IDD, who are hard to serve in integrated and individualized ways, clustered in group homes and day programs.</p> <p>Public policies are written broadly and assume that even those with severe IDD can attain choice and inclusion ([<reflink idref="bib6" id="ref16">6</reflink>]; [<reflink idref="bib22" id="ref17">22</reflink>]; [<reflink idref="bib45" id="ref18">45</reflink>]). But achieving integration and individualization will be especially difficult for people with higher support needs. These individual factors do not operate in a vacuum—instead, multiple levels of influence beyond the service user will affect progress toward SR goals.</p> <hd id="AN0185232102-5">Interpersonal Barriers</hd> <p>Interpersonal barriers to SR include the responses of family members and paid caregivers. Social capital and networks of relationships in the immediate setting in which people with IDD live help or hinder integration and individualization.</p> <p> <emph>Families</emph> oversee the complex systems that serve adults with IDD. Their attitudes matter. [<reflink idref="bib21" id="ref19">21</reflink>] finds "that although the majority of family members have low levels of conscious disability prejudice, they have high levels of unconscious disability prejudice." Their decisions may be influenced by these problematic attitudes (p. 207). Ableist assumptions include an essentialist understanding of IDD (which defines disadvantages as biological incapacities within an individual) rather than a constructivist view (which asserts that social arrangements create limitations). Families may stigmatize their loved one by mirroring dominant stereotypes or may hold a deficit mindset emphasizing what they cannot do rather than a positive mentality stressing what they could do if given the chance. Many adults with IDD struggle with the power dynamics between their own desires and the desires their parents have for them ([<reflink idref="bib56" id="ref20">56</reflink>], p. 335). Some parents learn helplessness: they conclude, often with good reason, that their wishes for their child will never be fulfilled ([<reflink idref="bib21" id="ref21">21</reflink>]; [<reflink idref="bib50" id="ref22">50</reflink>]).</p> <p>While some parents understandably resign themselves to substandard services, many work toward a better life for their children. Greater family involvement increases community participation and personal choice ([<reflink idref="bib1" id="ref23">1</reflink>], p. 363). Families influence quality of life by how many individualized integration opportunities they provide for their loved one; they are often the natural supports that enable the person to make choices and access the community. Families also influence outcomes by demanding integration and individualization from agencies. Finally, families influence well-being through political activism that motivates legislative change and funding increases. Family support is affected by ethnic and cultural intersectionality: families of color generally prefer home-based care rather than social service system care, and this impacts the integration and individualization that are experienced ([<reflink idref="bib13" id="ref24">13</reflink>]; [<reflink idref="bib58" id="ref25">58</reflink>]).</p> <p> <emph>Service professionals</emph> also affect outcomes. [<reflink idref="bib48" id="ref26">48</reflink>] note that frontline staff's "instrumental and emotional support [is] the single most important facilitator" of social engagement and personal empowerment (p. 79). Staff shortages, discussed later, hinder these goals. So do staff attitudes. [<reflink idref="bib44" id="ref27">44</reflink>] report that some staff hold pessimistic views of the life chances of people with IDD. Stigmatization and ableist social norms are troubling because staff are key support personnel (p. 184). [<reflink idref="bib6" id="ref28">6</reflink>] confirm that negative attitudes affect inclusion and choice. Some staff doubt that such policies apply to higher need individuals; some treat service users like children; some conceptualize IDD through a deficit-focused model rather than a strengths-based approach. The attitudes and practices of some staff helps explain why those with milder IDD experience better outcomes than those with severe conditions ([<reflink idref="bib6" id="ref29">6</reflink>], p. 373).</p> <p>[<reflink idref="bib17" id="ref30">17</reflink>] points out that "what staff actually do (i.e., their performance at work and the extent and nature of their interaction with service users)" is critical to integrated and individualized outcomes. Yet "staff only spend about a third of their time at work directly supporting service users... [and so] instrumental support (assistance, encouragement) is low" (pp. 191–193). Many group home staff prioritize basic care tasks over social inclusion and person-centered tasks, which are not seen as part of their job ([<reflink idref="bib7" id="ref31">7</reflink>]; [<reflink idref="bib48" id="ref32">48</reflink>]). Staff vacancies and turnover, as well as attitudes and behaviors, may impede movement toward SR goals.</p> <hd id="AN0185232102-6">Organizational Barriers</hd> <p>Organizational obstacles to implementing SR occur in service agencies. [<reflink idref="bib32" id="ref33">32</reflink>] and [<reflink idref="bib43" id="ref34">43</reflink>] identify factors such as service culture based on a medical model of IDD and a lack of staff training and supervision. Individualized and integrated supports are difficult where agencies have established programs in place.</p> <p> <emph>Program characteristics</emph> may hinder SR objectives. Organization size impacts inclusion and choice: small and moderately sized agencies do better than very small and very large ones ([<reflink idref="bib19" id="ref35">19</reflink>]; [<reflink idref="bib48" id="ref36">48</reflink>]). Residence characteristics, as noted, also matter. Independent living has better quality of life outcomes than supported living—and both do better than supervised living. Small homes and apartments, attractive surroundings and opportunities for choice are associated with higher levels of community interaction and personal autonomy ([<reflink idref="bib31" id="ref37">31</reflink>]; [<reflink idref="bib62" id="ref38">62</reflink>]).</p> <p>Because institutions are not defined by size, institutional features can transfer to community settings. [<reflink idref="bib12" id="ref39">12</reflink>] identifies three models of community services: the institutional model (staff are authority figures), family model (staff are caring parents), and educational model (staff are teachers) (p. 165). Agencies in which individuals are managed, rather than taught, struggle with integration and individualization. [<reflink idref="bib20" id="ref40">20</reflink>] reports that group homes often operate by custodial models with "standardized and inflexible" services (p. 56). There are limited options for functional learning; "staff time is taken up with direct care and not focused on quality of life or growth of independent skills." Residents often sit around with nothing to do; when they do leave home, they typically go as a group—and so they cannot do certain things if their housemates do not want to ([<reflink idref="bib20" id="ref41">20</reflink>], p. 27). This is the antithesis of individualized and integrated supports.</p> <p>It is regulations and practices, not physical environments, that limit choice and inclusion ([<reflink idref="bib63" id="ref42">63</reflink>], p. 12). The culture of many agencies is rigidly tied to existing practices rather than innovation, to regulatory compliance rather than program creativity ([<reflink idref="bib32" id="ref43">32</reflink>]). Features that characterize "total institutions" impact outcomes ([<reflink idref="bib7" id="ref44">7</reflink>]). First, rigidity of routine. Institution-oriented practices are inflexible from day to day and person to person, whereas client-oriented agencies adapt to differences among persons. Second, block treatment. Institution-oriented practices regiment people and deal with them as a group rather than as individuals, whereas client-oriented agencies organize activities and routines so that people have options. Third, depersonalization. Institution-oriented practices offer few chances for self-determination, whereas client-oriented agencies avoid strict schedules and enable individual choice. SR requires client-oriented services, but these may be hard to achieve in institution-oriented agencies.</p> <p> <emph>Organizational culture</emph> may also hamper integration and individualization ([<reflink idref="bib7" id="ref45">7</reflink>]; [<reflink idref="bib33" id="ref46">33</reflink>]; [<reflink idref="bib43" id="ref47">43</reflink>]). Formal culture is the set of assumptions, values, norms and procedures that underlie service delivery and management practices, while informal culture consists of how staff perform their roles. In "weak culture" organizations, there is a disconnect between what staff do and what is officially required of them, while in "strong culture" organizations formal and informal culture are aligned, and outcomes congruent with the stated mission are more likely to result. In underachieving organizations, staff lack the skills or motivation to help service users with choice and inclusion, and management often provide inadequate training (such as countering of stigma) and lax supervision ([<reflink idref="bib7" id="ref48">7</reflink>]).</p> <p>Bigby and colleagues (2012) identify five dimensions of agencies which underperform in integration and individualization. First, misalignment of employee values with the organization's espoused values. Supervisors allow frontline staff to adopt their own ways of working that do not reflect agency priorities. Second, otherness. Staff see adults with IDD as a group rather than as individuals or stigmatize them as too disabled to participate in meaningful activity and community life. Third, doing "for" not "with" service users. Staff perceive their purpose as being to look after people by attending to health, hygiene and diet. Including residents in household chores or taking them into the community is seen as an "add on" to be done if there is time after core tasks are completed. Fourth, staff-centeredness. Work practices focus on getting things done rather than involving individuals in their own lives. The preferences of staff, not the needs or wants of service users, influence activities, outings and routines. Fifth, resistance to change. Because frontline staff feel distant from the larger organization and work independently, they view new procedures as challenging their autonomy.</p> <p>Settings Rule's goal of ending transinstitutionalization requires agency transformation. But many organizations have not embraced the need for profound change. This makes it difficult for them to develop the infrastructure and personnel that support person-centered activities and community inclusion ([<reflink idref="bib43" id="ref49">43</reflink>], p. 3). Even in agencies open to change, implementing personal plans and helping individuals access the community is more expensive and staff-intensive, and many simply do not have the resources to do anything but continue segregated and standardized services. The requirements of a new paradigm like SR does not mean that agencies and staff will alter their practices ([<reflink idref="bib12" id="ref50">12</reflink>], p. 225). Organization-level challenges may forestall SR goals.</p> <hd id="AN0185232102-7">Community Barriers</hd> <p>Community barriers to achieving SR goals occur at the municipal level. [<reflink idref="bib55" id="ref51">55</reflink>] identify three degrees of integration: presence (being in the community physically but having little contact with other people), encounter (fleeting or sustained interactions in a shared activity), and participation (developing personal relationships and a sense of belonging). True inclusion means community participation, not mere presence.</p> <p>Individuals with high levels of social capital enjoy more independence and integration ([<reflink idref="bib23" id="ref52">23</reflink>], p. 14). <emph>Bonding</emph> social capital is relationships with others who have similar characteristics—families and friends who assist adults with IDD access the community and make choices. <emph>Bridging</emph> social capital is affiliation with others who have different characteristics—community groups that enable integration and individualization. [<reflink idref="bib12" id="ref53">12</reflink>] notes that social capital includes "people throughout the community, such as a helpful bank teller, a yoga instructor willing to show people different techniques... , a bus driver who assists people taking unfamiliar routes" (p. 226). But many people in the community are hesitant to give their time and support ([<reflink idref="bib49" id="ref54">49</reflink>], p. 304). Outside of a primary network of natural family supports, social capital is missing for many adults with IDD.</p> <p>Ableism—misconceptions of and prejudice about disability, which is seen as negative by the dominant culture—is an obstacle to inclusion ([<reflink idref="bib53" id="ref55">53</reflink>]). As [<reflink idref="bib25" id="ref56">25</reflink>] explains, "ableism is, <emph>minimally</emph>, discrimination on the basis of ability, perceived or actual." Individual ableism is the prejudicial treatment of a person because of their disability. But understood "<emph>maximally</emph> [ableism is] a set of primary social and political structures that marginalize, organize and rank subjects... , shapes discourse and undergirds institutions." Structural ableism is discrimination against a disabled person or group that are embedded in the policies and practices of socio-ecological systems and institutions. Explicit and implicit bias labels people with IDD as incapable and deprives them of opportunity. In the workplace, they may need accommodations like extra time to complete tasks, which discourages employers from hiring them. They are often denied the adult social roles of sexual partner (they are thought to not have romantic feelings or the ability to understand sexual health and moral boundaries), married person (they are believed incapable of managing the financial and practical responsibilities of living together) and parent (they are assumed unable to care for a child and it is feared that their children may be born disabled) ([<reflink idref="bib34" id="ref57">34</reflink>], pp. 80–84 and 171–177).</p> <p>Despite legal entitlements, people with IDD are still excluded from public life. Interpersonal inclusion (receiving respect as an individual) goes beyond institutional inclusion (possessing the same civil rights as everyone else) ([<reflink idref="bib28" id="ref58">28</reflink>]). Regulations like SR address the political, but not the attitudinal, dimension of exclusion. Its impact on interpersonal inclusion is at most indirect; institutional inclusion of people with IDD disrupts the false assumption that they are incapable or unworthy of participating in community life. Contact theory asserts that when members of the public know adults with IDD personally, they become more respectful and treat them better ([<reflink idref="bib30" id="ref59">30</reflink>]). Without changing public attitudes and actions, SR's success will be limited.</p> <hd id="AN0185232102-8">Socio-Political Barriers</hd> <p>Socio-political barriers to accomplishing SR include the history of service delivery, federal legislation, state policies and funding levels. [<reflink idref="bib19" id="ref60">19</reflink>] notes that while SR requires choice and inclusion, it "does not include oversight mechanisms or increased funding to ensure consistent compliance." This is problematic since improvements in quality of life depend not only on changes made by agencies, but also by federal and state bureaucracies (p. 123).</p> <p> <emph>Competing policy agendas</emph> create tensions in service delivery. Cause agendas, [<reflink idref="bib3" id="ref61">3</reflink>], Chapter 2) says, establish civil rights, while care agendas meet needs for maintenance and rehabilitation. Institutional services provide professional care but deny the right to choose (by imposing rigid schedules and uniform activities); they meet deficiency needs (basic essentials) but ignore growth needs (optional ambitions that fulfill personal potential). Community services, by contrast, combine rights to care and choice. But achieving both safety and independence is challenging; it is difficult for many organizations to shift from a caregiving role to a coaching role. While rights-based policy is the official rhetoric of integrated, person-centered support, most disability practice remains care-oriented. The reality is segregated, system-centered programs ([<reflink idref="bib3" id="ref62">3</reflink>], p. 54). Inadequate care is frequent in community settings ([<reflink idref="bib4" id="ref63">4</reflink>]; [<reflink idref="bib46" id="ref64">46</reflink>]). If states cannot guarantee basic safety, they are unlikely to deliver the high-quality services SR requires.</p> <p>Changes in practice do not flow in any straightforward way from changes in policy. There is, [<reflink idref="bib18" id="ref65">18</reflink>] say, a "gulf between the general goals of choice and empowerment at the policy level and the translation of this on the ground. Staff who support the choice agenda continually face practical, social and philosophical dilemmas and obstacles" (p. 358). As noted, goals of independence and care conflict—it is difficult to balance choice against protection of vulnerable adults. Services charged with acting in the best interests of people with IDD often act contrary to their wishes ([<reflink idref="bib18" id="ref66">18</reflink>], p. 352). [<reflink idref="bib12" id="ref67">12</reflink>] points out that "receipt of services largely requires one to forfeit the right to select one's own housing, roommates, staff, daily activities and schedule" (p. 3).</p> <p> <emph>Inadequate funding</emph> will undermine effective action on integration and individualization. Federal and state governments have a history of underinvestment in long term supports, and pervasive funding deficiencies have persisted for decades ([<reflink idref="bib26" id="ref68">26</reflink>]). Illinois, for example, ranks 43rd in the nation in fiscal effort for IDD services, spending US$2.86 per US$1,000 of personal income—the national average is US$4.41 ([<reflink idref="bib57" id="ref69">57</reflink>]). Stabilizing the Illinois system currently requires an additional US$247 million annually. The 2024 budget calls for US$63 million, considerably below the US$95 million appropriated for 2023 and far below what is needed ([<reflink idref="bib38" id="ref70">38</reflink>]). SR is an unfunded mandate—a federal regulation that imposes demands on states without including the funding required to comply. Integrated and individualized services increase financial costs, but federal Medicaid reimbursements have not been raised to offset the additional expense. Without extra funding for community based, customized services, SR may have little impact ([<reflink idref="bib20" id="ref71">20</reflink>], p. 42).</p> <p> <emph>Unstable staffing</emph> will also hinder SR compliance. Numerous reports ([<reflink idref="bib2" id="ref72">2</reflink>]; [<reflink idref="bib42" id="ref73">42</reflink>]; [<reflink idref="bib47" id="ref74">47</reflink>]) indicate that the national shortage of direct care staff is a serious obstacle to integration and individualization. [<reflink idref="bib35" id="ref75">35</reflink>] point out that "having knowledgeable and familiar staff supporting the individual offers a better chance of developing attainable goals and successfully implementing them," while having inexperienced staff in these key support positions compromises services (p. 13, modified). High vacancy and turnover rates among frontline workers negatively impact choice and inclusion.</p> <p>Staff shortages have occurred for many years, mainly because agencies are not reimbursed enough to offer competitive wages and career pathways ([<reflink idref="bib24" id="ref76">24</reflink>]). The COVID-19 pandemic and Great Resignation, during which SR was implemented, accelerated the staffing crisis ([<reflink idref="bib2" id="ref77">2</reflink>]). A 2023 survey of Illinois agencies found 25% of frontline positions vacant—many agencies consolidated or closed residential and vocational sites. Beyond sustainability, the staffing shortage affects quality of services. A revolving door of caregivers do not know individuals' support needs and cannot implement personal plans and community access ([<reflink idref="bib37" id="ref78">37</reflink>]). Without stabilizing the service system by addressing fiscal and staffing constraints, SR success will be compromised.</p> <hd id="AN0185232102-9">Socio-Ecological Action Steps for Settings Rule Success</hd> <p>Numerous barriers create a discrepancy between formal and implemented policy ([<reflink idref="bib15" id="ref79">15</reflink>]). The detailed critique I have given implies constructive suggestions that support the shift needed for SR goals of inclusion and choice to become a reality.</p> <p>[<reflink idref="bib54" id="ref80">54</reflink>] outline six action steps for aligning policy commitments and service delivery (pp. 315–316). First, policymakers and service agencies should identify best practices in assessing needs and planning individualized supports. Second, they should require a universal multidimensional approach to determining needs and supports. Third, they should ensure seamless transitions across the lifespan, from early intervention through school-based education and into adult services. Fourth, they should employ ongoing training, outcome-based management and quality improvement strategies to implement guidance already in place. Fifth, they should align support needs with fiscal and human resources. Sixth, they should use outcome assessment to revise policy and practice. Socio-ecological solutions include the microsystem (individual planning), mesosystem (agency service delivery) and macrosystem (public policies that improve quality of life) ([<reflink idref="bib9" id="ref81">9</reflink>]).</p> <hd id="AN0185232102-10">Interpersonal Action Steps</hd> <p>Interactions between service users and frontline staff are crucial to high quality services. Staff should be trained in active support that facilitates activities and relationships, including both big decisions and details of everyday life ([<reflink idref="bib18" id="ref82">18</reflink>]). Active support creates better engagement, and staff who are trained in it have attitudes much more in line with policies of community inclusion and empowerment ([<reflink idref="bib33" id="ref83">33</reflink>], p. 405). Active support is especially important for higher need individuals. Agencies, [<reflink idref="bib6" id="ref84">6</reflink>] assert, must address "the incongruence between attitudes of some staff towards people with severe IDD and the values that underpin policy and service delivery goals." Regular individualized supervision is pivotal in helping staff translate abstract values into everyday practice (pp. 373–374).</p> <p>While frontline staff have a key role in promoting choice and inclusion, many prioritize basic care tasks ([<reflink idref="bib7" id="ref85">7</reflink>]; [<reflink idref="bib36" id="ref86">36</reflink>]; [<reflink idref="bib48" id="ref87">48</reflink>]). Administrators can help them assume these extra responsibilities, [<reflink idref="bib52" id="ref88">52</reflink>]) say, through regular supervision and team meetings. Ongoing training requires managers to observe frontline staff and give feedback about "what type of life the person with IDD is living, how engaged the person is with his/her life and whether lifelong learning opportunities are being provided" (p. 282). Organizations must pay conscious attention to staff understandings of policy principles and how they apply in practice, especially to people with more severe IDD ([<reflink idref="bib6" id="ref89">6</reflink>], p. 373). Managers should prioritize training and mentoring that interprets and demonstrates SR goals.</p> <hd id="AN0185232102-11">Organizational Action Steps</hd> <p>"Abolishing transinstitutionalization," [<reflink idref="bib19" id="ref90">19</reflink>] states, "requires provider transformation that shifts the culture of the organization by moving beyond compliance and custodial models of care, reexamining norms and removing assumptions [and] introducing evidenced-based, person-centered practices" (pp. 121–122). [<reflink idref="bib51" id="ref91">51</reflink>]) identify organizational norms that may impede SR goals. These include understandings of IDD that focus on personal defects rather than potential and addressing environmental factors, an over-emphasis on quality of care instead of quality of life, and the assumption that organizations are mechanistic entities rather than self-organizing systems that reinforce particular patterns of thinking and doing (p. 187). Agency leaders must challenge these attitudes that hinder change. [<reflink idref="bib7" id="ref92">7</reflink>] spotlight the fit between organizational and staff perspectives; high performing agencies "have the right formal values, goals, structures and processes in place <emph>and</emph> staff at all levels... act in accord with them" (p. 453).</p> <p>A lack of choice and inclusion is often due to the custodial culture of agencies that are compliant rather than creative ([<reflink idref="bib20" id="ref93">20</reflink>]). Organizations can enhance their performance, by incorporating management learning theory, performance indicators, internal evaluations and continuous improvement. Senior managers must create agencies whose culture is characterized by innovation, inquiry, collaboration as well as thoughtful goal setting and strategic planning ([<reflink idref="bib52" id="ref94">52</reflink>], p. 278). Achieving SR goals will require shifting from deficit-focused to strength-based service design. As [<reflink idref="bib63" id="ref95">63</reflink>] say, "person-environment engagement models emphasize the development of individualized supports to both increase personal capacity and provide accommodations for or modifications to the environment" (p. 7). Finally, [<reflink idref="bib51" id="ref96">51</reflink>]) assert, to accomplish integration and individualization, agencies must turn from organization-based programs to community-based support systems, from being primary service providers to being bridges to the community (p. 188). They must nurture natural support systems and increase their collaboration with mainstream partners. Working with community leaders to create opportunities involves systems-thinking beyond the level of the individual or organization ([<reflink idref="bib52" id="ref97">52</reflink>], p. 279).</p> <p>[<reflink idref="bib19" id="ref98">19</reflink>], pp. 15–16) reports that people with IDD do not have significantly better outcomes in the community than in institutions. These findings should "push provider-owned or -operated settings to be more progressive." This requires, [<reflink idref="bib59" id="ref99">59</reflink>] say, "changing the [organization's] focus, simplifying... accountability systems, aligning resources and teaching staff how to utilize support plans more efficiently to teach skills in functionally-appropriate community-integrated activities" (p. 891). To manage these changes, agency leaders must communicate a shared vision, encourage professional growth, take a systems perspective, emphasize the bridging role of the organization, and ensure the transfer of knowledge throughout it ([<reflink idref="bib52" id="ref100">52</reflink>], p. 280).</p> <hd id="AN0185232102-12">Community Action Steps</hd> <p>Inclusion and choice are about relationships, not location, and government mandates cannot change an inhospitable public. To achieve SR goals, Obisike and colleagues (2012) state, "the systems within the community must work together." This requires collaboration between agencies and members of the community (pp. 12–13). [<reflink idref="bib27" id="ref101">27</reflink>]) agree: "ideally the support needed by people with disabilities will be spread throughout the community, and agencies will provide services in a manner that makes consumers less dependent on those services" (p. 64). In transitioning from centralized services to dispersed supports, agencies must partner with a wide range of nondisability sectors.</p> <p>Adults with IDD want two types of inclusion. The first is <emph>competitive integrated employment</emph>, where a person works for a local business, earning a regular wage alongside coworkers who are not disabled. The [<reflink idref="bib11" id="ref102">11</reflink>] provides suggestions for how workplaces, both paid and volunteer, can make it easier for people with IDD to learn job duties through guided internships, work trials and job shadowing and by making accommodations like flexible schedules, job sharing and assistive devices at workstations.</p> <p>The second type of inclusion is <emph>community life engagement</emph>, where a person is part of the community when they are not working. The [<reflink idref="bib14" id="ref103">14</reflink>] gives recommendations for how faith communities can make physical space, worship materials and education curricula accessible, conduct liturgical celebrations of people with IDD, support them throughout the week, partner with agencies and advocate with elected officials. The [<reflink idref="bib41" id="ref104">41</reflink>] offers ways for arts, music and theater groups to make rehearsals manageable, provide instrumental and communication options for nonverbal participants, simplify scores, scripts and projects, utilize adaptive tools as well as use peer tutors, personal assistants and special education teachers. The Sport Information Resource Center ([<reflink idref="bib16" id="ref105">16</reflink>]) has ideas for how fitness clubs can incorporate accessible features, install equipment that is usable by people with varying degrees of ability, provide physical assistance and emotional support, pair a person with IDD with a peer mentor for exercise together and include physical therapists with knowledge of exercise and disability. Unified Sports teams modeled on Special Olympics school-based athletics or "buddy sports," which have abled and disabled athletes of similar age and ability train and play together, can be assembled.</p> <p>Integrated and individualized programs require both creative service systems and community alliances. [<reflink idref="bib5" id="ref106">5</reflink>] observe that integration programs succeed when five processes are in place: leadership commitment to inclusion, participants with IDD who have good social skills, community groups that accept advice about including a person with IDD, an integrating activity, and group flexibility to deal with difference among members (p. 176). Agencies should develop public education interventions that target misconceptions and increase knowledge of IDD ([<reflink idref="bib53" id="ref107">53</reflink>]). It is the quality, not quantity, of interactions that creates positive attitudes, so staff must take care when developing inclusion activities ([<reflink idref="bib30" id="ref108">30</reflink>]).</p> <hd id="AN0185232102-13">Socio-Political Action Steps</hd> <p>[<reflink idref="bib61" id="ref109">61</reflink>]) report that "the culture, expectations, resources and available accommodation options established within [federal and] state developmental disabilities service systems have significant effect on the extent to which people are afforded" integration and individualization (p. 502). Two macrosystem factors in particular impact these goals. The first is <emph>funding</emph>. Federal and state governments have long underinvested in supports that facilitate choice and inclusion. What is needed is modeled in the 2022 American Jobs Plan, defeated by Congress, which earmarked US$400 billion to expand community services and competitive employment as well as increase pay for frontline staff. Additional funding is required at the level necessary to deliver integrated and individualized services. The second is <emph>staffing</emph>. Staff shortages have occurred for many years but are particularly acute now. The [<reflink idref="bib47" id="ref110">47</reflink>] acknowledges the need to create an occupation of Direct Support Professional with sufficient pay, benefits, training and career pathways to recruit and retain a stable, skilled workforce (p. 26). [<reflink idref="bib26" id="ref111">26</reflink>] identify systemic solutions: establish an occupational title with the Bureau of Labor, fund competency-based training and credentialing, develop pipeline educational programs in high schools and colleges, and increase technology-enhanced supports (p. 51). Without stable funding and staffing, SR success will not be robust.</p> <hd id="AN0185232102-14">Concluding Remarks</hd> <p>I am meeting with David's service team about his restructured day program. The sheltered facility serves 82 people, divided into smaller groups which rotate between activities. Few participate in the community and all have limited choices. "How does that meet the requirements of the Settings Rule?" I ask. After a long pause, a manager replies, "we're really stretching its intent." I try again: "how is the program community based and person-centered when 82 people meet in the same congregate, disability-specific location?" My question goes unanswered.</p> <p>The following week I attend an online advocacy meeting that includes directors of the Division of Developmental Disabilities. Discussion turns to Illinois' enforcement of SR standards. "We're focused on minimum compliance," a state official admits, "not best practice." That corroborates what I had heard from a senior administrator at David's agency. As an unfunded mandate, she stated, "the Settings Rule is just an aspirational document. Its intent, what the government wants to happen, and our ability to meet that intent, are in tension." So, I ask, will the agency lose funding for not following SR requirements? "No," I am told. "The state is pretty much approving all agency claims of compliance. There's little rigor in its scrutiny."</p> <p>These exchanges illustrate the inconsistency between formal policy and implemented policy; agency practice and system enforcement often run counter to official values. SR is built on a philosophy of normalization: adults with IDD should experience patterns of everyday life that conform as closely as possible to the norms of mainstream society and nondisabled peers. In reality, however, services remain segregated and standardized. These conversations also illustrate [<reflink idref="bib3" id="ref112">3</reflink>] observation that implementing policy can contain slippage and gaps. Implementation <emph>slippage</emph> "refers to circumstances wherein those involved in the implementation of a particular... policy adjust the interpretation of the policy toward their preferred policy." Agencies construe regulations as aspirations, tempering them to match existing programs rather than tailoring services to meet policy requirements. Implementation <emph>gaps</emph> "refer to an absence of related programs or enforcement of the policy... with regard to a defined subset of the circumstances that the policy was designed to address" (p. 81). Agencies provide integrated and individualized services to adults with lower support needs, while those with higher support needs receive segregated and standardized programs. Both slippage and gaps in SR implementation are likely to occur. David's vocational and residential programs remain institutionalized, socially isolated, system-centered and nonindividualized.</p> <p>Settings Rule is an inspiring policy statement meant to remedy the stunted lives of adults with IDD in the community care system. But here is the problem: in 1990, the ADA required an end to segregated and standardized services; in 1999, so did <emph>Olmstead</emph>. Consider what happened in Illinois ([<reflink idref="bib29" id="ref113">29</reflink>].). The state did not comply, so lawsuits were brought on behalf of adults who wanted community services. The 2011 <emph>Ligas</emph> settlement enforces their right to integrated and individualized living. Thousands of people, including David, moved into the community. But Illinois refused to allocate sufficient funds, resulting in social isolation as well as a lack of productive activities and skill development. Without adequate resources, <emph>Ligas</emph> became a dead end. In 2017, the Court found Illinois out of compliance and ordered it to update its payment methodology. The 2020 Guidehouse Study provides a roadmap to stabilize community services through multi-year investments. But the legislature refuses to fully fund the recommendations. Agencies have combined group homes and day centers, ended programs altogether and turned away people seeking services—at the very time SR requires system upgrades ([<reflink idref="bib37" id="ref114">37</reflink>]).</p> <p>Settings Rule aims to overcome the institutional legacy of community settings. But several decades of progressive policies have not achieved community participation and personalized supports ([<reflink idref="bib5" id="ref115">5</reflink>], p. 167). It is realist, not defeatist, to wonder: if deinstitutionalization led to transinstitutionalization, why think that SR will create inclusion and choice? 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Gould</p> <p>Reported by Author</p> </aug> <nolink nlid="nl1" bibid="bib18" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib19" firstref="ref2"></nolink> <nolink nlid="nl3" bibid="bib39" firstref="ref4"></nolink> <nolink nlid="nl4" bibid="bib40" firstref="ref8"></nolink> <nolink nlid="nl5" bibid="bib20" firstref="ref9"></nolink> <nolink nlid="nl6" bibid="bib55" firstref="ref11"></nolink> <nolink nlid="nl7" bibid="bib35" firstref="ref12"></nolink> <nolink nlid="nl8" bibid="bib10" firstref="ref14"></nolink> <nolink nlid="nl9" bibid="bib60" firstref="ref15"></nolink> <nolink nlid="nl10" bibid="bib22" firstref="ref17"></nolink> <nolink nlid="nl11" bibid="bib45" firstref="ref18"></nolink> <nolink nlid="nl12" bibid="bib21" firstref="ref19"></nolink> <nolink nlid="nl13" bibid="bib56" firstref="ref20"></nolink> <nolink nlid="nl14" bibid="bib50" firstref="ref22"></nolink> <nolink nlid="nl15" bibid="bib13" firstref="ref24"></nolink> <nolink nlid="nl16" bibid="bib58" firstref="ref25"></nolink> <nolink nlid="nl17" bibid="bib48" firstref="ref26"></nolink> <nolink nlid="nl18" bibid="bib44" firstref="ref27"></nolink> <nolink nlid="nl19" bibid="bib17" firstref="ref30"></nolink> <nolink nlid="nl20" bibid="bib32" firstref="ref33"></nolink> <nolink nlid="nl21" bibid="bib43" firstref="ref34"></nolink> <nolink nlid="nl22" bibid="bib31" firstref="ref37"></nolink> <nolink nlid="nl23" bibid="bib62" firstref="ref38"></nolink> <nolink nlid="nl24" bibid="bib12" firstref="ref39"></nolink> <nolink nlid="nl25" bibid="bib63" firstref="ref42"></nolink> <nolink nlid="nl26" bibid="bib33" firstref="ref46"></nolink> <nolink nlid="nl27" bibid="bib23" firstref="ref52"></nolink> <nolink nlid="nl28" bibid="bib49" firstref="ref54"></nolink> <nolink nlid="nl29" bibid="bib53" firstref="ref55"></nolink> <nolink nlid="nl30" bibid="bib25" firstref="ref56"></nolink> <nolink nlid="nl31" bibid="bib34" firstref="ref57"></nolink> <nolink nlid="nl32" bibid="bib28" firstref="ref58"></nolink> <nolink nlid="nl33" bibid="bib30" firstref="ref59"></nolink> <nolink nlid="nl34" bibid="bib46" firstref="ref64"></nolink> <nolink nlid="nl35" bibid="bib26" firstref="ref68"></nolink> <nolink nlid="nl36" bibid="bib57" firstref="ref69"></nolink> <nolink nlid="nl37" bibid="bib38" firstref="ref70"></nolink> <nolink nlid="nl38" bibid="bib42" firstref="ref73"></nolink> <nolink nlid="nl39" bibid="bib47" firstref="ref74"></nolink> <nolink nlid="nl40" bibid="bib24" firstref="ref76"></nolink> <nolink nlid="nl41" bibid="bib37" firstref="ref78"></nolink> <nolink nlid="nl42" bibid="bib15" firstref="ref79"></nolink> <nolink nlid="nl43" bibid="bib54" firstref="ref80"></nolink> <nolink nlid="nl44" bibid="bib36" firstref="ref86"></nolink> <nolink nlid="nl45" bibid="bib52" firstref="ref88"></nolink> <nolink nlid="nl46" bibid="bib51" firstref="ref91"></nolink> <nolink nlid="nl47" bibid="bib59" firstref="ref99"></nolink> <nolink nlid="nl48" bibid="bib27" firstref="ref101"></nolink> <nolink nlid="nl49" bibid="bib11" firstref="ref102"></nolink> <nolink nlid="nl50" bibid="bib14" firstref="ref103"></nolink> <nolink nlid="nl51" bibid="bib41" firstref="ref104"></nolink> <nolink nlid="nl52" bibid="bib16" firstref="ref105"></nolink> <nolink nlid="nl53" bibid="bib61" firstref="ref109"></nolink> <nolink nlid="nl54" bibid="bib29" firstref="ref113"></nolink>
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  Data: From Policy to Practice: Socio-Ecological Challenges in Implementing the Home and Community Based Settings Rule
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  Data: <searchLink fieldCode="AR" term="%22James+B%2E+Gould%22">James B. Gould</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-7614-3169">0000-0002-7614-3169</externalLink>)
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Disability+Policy+Studies%22"><i>Journal of Disability Policy Studies</i></searchLink>. 2025 36(1):29-39.
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  Data: SAGE Publications and Hammill Institute on Disabilities. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com
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  Data: 11
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  Data: 2025
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  Data: Journal Articles<br />Reports - Evaluative
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  Data: <searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+Disability%22">Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Home+Programs%22">Home Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Community+Services%22">Community Services</searchLink><br /><searchLink fieldCode="DE" term="%22Inclusion%22">Inclusion</searchLink><br /><searchLink fieldCode="DE" term="%22Federal+Regulation%22">Federal Regulation</searchLink><br /><searchLink fieldCode="DE" term="%22Normalization+%28Disabilities%29%22">Normalization (Disabilities)</searchLink><br /><searchLink fieldCode="DE" term="%22Individualized+Programs%22">Individualized Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Barriers%22">Barriers</searchLink>
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  Data: 10.1177/10442073241289081
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  Data: 1044-2073<br />1538-4802
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: The 2014 U.S. Centers for Medicare and Medicaid Services "Settings Rule," which took effect in 2023, restricts Home and Community Based Services funding for adults with intellectual disabilities to small integrated settings and person-centered supports. The Settings Rule responds to the fact that community services, mandated by the Americans with Disabilities Act (ADA) and the Supreme Court Olmstead ruling, while integrated physically, often operate as institutions. The Settings Rule is meant to create integration and individualization. I argue that the regulation cannot, on its own, accomplish these goals. The deinstitutionalization movement has had mixed outcomes--and without change across multiple socio-ecological systems, the Settings Rule will also deliver mixed results.
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        PageCount: 11
        StartPage: 29
    Subjects:
      – SubjectFull: Adults
        Type: general
      – SubjectFull: Intellectual Disability
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      – SubjectFull: Home Programs
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      – SubjectFull: Community Services
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      – SubjectFull: Inclusion
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      – SubjectFull: Normalization (Disabilities)
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      – SubjectFull: Barriers
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      – TitleFull: From Policy to Practice: Socio-Ecological Challenges in Implementing the Home and Community Based Settings Rule
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