Abstract

In the United States, the Social Security Administration (SSA) provides financial benefits through Supplemental Security Income (SSI) to many individuals with intellectual and developmental disabilities (IDD). Family members and service coordinators (SCs) provide a critical role in applying for SSI on behalf of individuals with IDD. The present study uses a street-level lens to understand the implementation of SSI policy from the perspective of family respondents and SCs based upon their experiences with the application process. Using surveys developed from focus groups and interviews with family members and SCs, the study explores parts of the application process that facilitated success and barriers that hindered the procurement of benefits, and also elicited suggestions for improvement of the process. Survey respondents included 122 family members and 122 SCs in the western region of New York State. Findings reflect experiences at the various steps of the application process including initial applications, interviews and assessments, as well as experiences with SSA workers. Despite several significant differences, a general congruence between family respondents and SCs suggests considerable opportunities for improvement. This study provides a preliminary evaluation of a complex process from two different perspectives, with implications for policy, practice and future research.

In the United States, individuals with intellectual and developmental disabilities (IDD) are often economically and socially marginalized in society and are frequently relegated to a life of poverty (Noblitt & Perskin Noblitt, 2010). Approximately one third of adults with IDD live below the poverty level (Reschly, Myers, & Hartel, 2002) in part due to an inability to secure or maintain gainful employment. With an increasing number of individuals being diagnosed with IDD and with higher prevalence rates among families living below poverty (Boyle et al., 2011), the need for access to financial resources is intensified.

Supplemental Security Income (SSI) began operation in the United States in 1974 following the Social Security Amendments of 1972. Administered under the Social Security Administration (SSA), SSI is part of the nation's welfare programs that provides monthly financial support to eligible individuals who are aged, blind, or disabled (SSA, 2013b). Individuals with IDD are often among those who benefit from the monthly income and access to other essential benefits such as Medicaid, afforded through SSI (Reschly et al., 2002). (The application for SSI is also an application for Medicaid in many states [SSA, 2014].) Thus, SSI functions as a critical support, enabling individuals with IDD to live in the community while reducing the impact of poverty and aiding the procurement of various supports and services, including vocational training, case management, and family support services (Noblitt & Perskin Noblitt, 2010; Reschly et al., 2002).

Application Process and Eligibility for SSI

A stepwise process is used in the application process for SSI to determine the presence of a qualifying disability based upon an individual's medical and vocational information. When information is insufficient, disability determination service agencies can arrange and pay for a consultative examination to be completed by a treating or independent physician (American Academy of Pediatrics, Council on Children with Disabilities [AAP], 2009). Eligibility for SSI requires a disability to be a physical or mental impairment that is medically determinable and “expected to result in death or has lasted or can be expected to last for a continuous period of not less than 12 months.” For those under the age of 18, the disability must result “in marked and severe functional limitations,” and, for those 18 and older, it must result “in the inability to do any substantial gainful activity” (SSA, n.d. d.). In addition, the person must be a citizen of the United States, or meet other designated criteria, with limited income and resources. (More specifically, his/her individual resources must not exceed $2,000. In addition, an individual can secure gainful employment while receiving SSI, however, for every dollar earned beyond the first $85 in a given month, $.50 is deducted from his/her monthly SSI payment. In 2014, the monthly maximum federal amount for SSI is $721 which may be supplemented by State resources in some jurisdictions [SSA, n.d. c.].)

The application process can be complicated by numerous factors, including (a) objective and subjective indicators based upon different conceptualizations of adaptive behavior, (b) less easily quantified deficits in adaptive behavior among individuals functioning in the mild range of intellectual disability, (c) differences in assessment tools (e.g., content, standardization, floor/ceiling effects), and (d) the process of combining data from different sources to identify deficits in functioning used by trained lay examiners. These factors can result in a delayed determination, inconsistent decision making regarding an individual's fulfilment of eligibility criteria, and errors in excluding someone who is legally entitled to benefits or including someone who is not entitled to SSI (Reschly et al., 2002).

Those who have been denied during the initial application process can petition the decision through a four-level appeal process which includes (1) reconsideration of the application by a new adjudicator, (2) a hearing before an administrative law judge, (3) a review by the Appeals Council, and (4) a review by the Federal Court. (The reconsideration level was eliminated in 10 states for applications filed October 1, 1999 or later due to the piloting of a prototype process [SSA, 2013a].) In addition, SSI recipients can be subsequently subjected to redeterminations. A child recipient must complete a redetermination upon reaching age 18 due to differences in criteria for the definition of a disability during adulthood. Furthermore, adult recipients receive planned medical reviews every 7 years unless medical improvement might be expected, in which case reviews can be done every 3 years. Redeterminations among adult recipients may also be triggered by changes in an individual's work status or financial earnings (SSA, 2013b).

Transition Into Adulthood

The transition into adulthood has particular implications for individuals who, as children, were approved for SSI. Upon an individual's 18th birthday, his/her eligibility for SSI is re-determined under the adult definition of disability (previously stated) and his/her family's income and resources are excluded. Approximately one third of individuals who received SSI as children are denied due to the shift in focus of the disability criteria–from functioning level to ability to perform work. Children who were ineligible for SSI because of excessive familial financial resources often become eligible due to the exclusion of family income and resources (AAP, 2009). Some individuals who lose SSI after age 18 find other sources of income, yet many others struggle financially and often do not participate in postsecondary education or rehabilitation activities, or are unemployed.

Concerns around the time of transition are compounded by a lack of awareness among individuals and families regarding programs such as the Plan to Achieve Self-Support (PASS) and Ticket to Work that are afforded to SSI recipients to foster employment (Loprest & Wittenburg, 2005). Furthermore, individuals who have lost their SSI benefits less often live in two-parent families than those who maintain SSI benefits at after age 18. This is noteworthy given that those living in two-parent family households have been found to fare better relative to other groups (Loprest & Wittenburg, 2005).

Demographics of SSI Recipients

In 2012, of the 12.7 million disabled beneficiaries ages 18–64 receiving Social Security Disability Insurance (SSDI), SSI or both, nearly 3.5 million received SSI only and another 1.4 million received a combination of SSDI and SSI. Of those who received SSI only, 18.5% had intellectual disabilities and another 2.7% had autism or other developmental disability (SSA, 2013a). (Social Security Disability Insurance [SSDI] is based upon earnings of self or parent. If an individual is entitled to SSDI benefits in an amount less than the current SSI benefit amount, he/she may receive an SSI payment for the difference between his/her SSDI benefit and the SSI benefit amount, plus $20. In addition, persons may receive Old-Age and Survivors Insurance [OASI] that provides benefits to retired workers, dependent family members and survivors. Those receiving OASI are subsumed under Social Security beneficiaries without further differentiation in the cited report.)

Of the 1.3 million children who received SSI, 67% lived in one-parent households, 21% lived in two-parent households, and 12% lived independently or in other settings. Of all children living with one parent, nearly half had no parental income and a quarter had a total monthly income of $1,000 or more. In contrast, of those living with two parents, about one fifth had no parental income and more than half had a monthly income of $1,000 or more (SSA, 2013b). Most child SSI recipients had special healthcare needs and a majority lived in families with an average household income equal to the federal poverty threshold. More than one third of children lived in families where incomes were below the poverty level and nearly half lived with parents who had not graduated high school (Loprest & Wittenburg, 2005).

Distribution of SSI Determinations

In 2011, of 2.7 million applications for SSI (including SSI-only applications and applications for both SSDI and SSI) for all ages, the outcomes at all adjudicative levels resulted in approximately 43% receiving medical allowances. (A medical allowance is a “determination by the Disability Determination Service, an administrative law judge, or the Appeals Council that an applicant meets the medical definition of disability under the law” [SSA, 2013b, p. 161].)

Following subsequent nonmedical denials, 29% of applications were awarded benefits (SSA, 2013b). The percentages and rationales for final medical denials included (a) the impairment did not or was not expected to last 12 months (3%), (b) impairment was not severe (11%), (c) impairment did not cause severe functional limitations (19%), (d) ability to do usual past work (13%), (e) ability to do other type of work (32%), and (f) other reasons such as insufficient evidence and failure to continue the claim (22%). The most common nonmedical reason for denying a claim was excess income (SSA, 2013b).

When considering the different levels of appeals, of 1.1 million SSI-only applications for all ages with decisions at the initial adjudicative level, 31.6% were granted medical allowances. Of 272,812 SSI-only applications for all ages at the reconsideration level, 8.6% were granted medical allowances. Of the 32,870 at the hearing level or above, 41.2% were granted medical allowances (SSA, 2013b). A progressive decrease in the number of applications is seen at each level of the appeals process, beyond the impact of additional allowances, with an increased likelihood of medical allowances at the highest levels of appeals.

Service Coordination and SSI

Individuals with IDD and their families frequently experience challenges with the application and disability determination process for SSI “that may be insurmountable without an advocate to pursue access to benefits for them” (Reschly et al., 2002, p. 43). Although family members often apply on the behalf of, or assist, individuals with the process, service coordination may be an additional source of support for many. Service coordination is accessible to individuals with IDD through two different mechanisms. Although it is a mandated service for early intervention programs under the Individuals With Disabilities Education Act (IDEA; 34 CFR 303.22; U.S. Government Printing Office, 2012), it is also afforded under Section 1905(a)(19) of the Social Security Act that authorizes State Medicaid agencies to provide case management services to Medicaid beneficiaries (SSA, n.d. a). Service coordinators (SCs) often serve as a “single point of contact” for individuals and families and coordinate “services across agency lines” (Bruder et al., 2005, p. 178).

In New York State, the Office for People With Developmental Disabilities (NYSOPWDD) oversees service coordination which operates as a State Plan Service under the federal targeted case management program (NYSOPWDD, 2011). (A State Plan is a contract between a State and the Federal Government that describes how that State administers its Medicaid program.) Service coordinators, employed by organizations serving the IDD population, link and refer individuals to supports and services and maintain a working document of the individuals' history, current status, and services (NYSOPWDD, 2011). In addition, they may assist families and individuals with obtaining benefits such as SSI by providing support with the completion of necessary paperwork and advocating on their behalf with other providers and agencies like SSA.

Theoretical Lens

SSI is an integral support for many individuals, and although anecdotal evidence highlights the challenging nature of the application process, there is a dearth of research regarding the experiential component of the process. In order to understand the frontline experiences of the application process, the current study utilizes a street-level lens that is grounded in the theory of street-level bureaucracy.

Street-level bureaucracy refers to the characteristics and dynamics associated with the interactions between public agency employees (i.e., those in the helping profession) and those seeking services (Lipsky, 1980). These employees, identified as street-level bureaucrats (SLBs), strive to advocate for their clients yet often experience conflict between their own beliefs, commitments, work demands, and limited resources. SLBs “put their own imprint on policy and, in the process, effectively determine ‘who gets what, when and how’ (Brodkin, 2011, p. i199; Lasswell, 1958). SLBs are frequently part of a micro-network of vertical and horizontal relationships given the collaborative nature of their work and the services they provide (Hupe & Hill, 2007). However, SLBs may be detached from their clients through defense mechanisms to manage work-related stressors and as they only work on aspects of any given service (Lipsky, 1980; Summers & Semrud-Clikeman, 2000).

Alone, policy is often insufficient in explaining frontline behavior and experiences given the influence of numerous factors such as personal characteristics (Hupe & Hill, 2007). “By examining how policy is delivered at the ‘front lines’… it brings into view…practices that systematically shape the policy experience” (Brodkin, 2008, p. 327). Thus, a street-level perspective can be used to illuminate the informal “practices that otherwise can escape analytic scrutiny and even recognition…directly investigating how…organizations operate as policy intermediaries opens up a broad set of important questions at the intersection of policy, management and organizational studies” (Brodkin, 2011, p. i199-i200). As such, a bottom-up approach is necessary to understand the implications of policy on frontline experiences (Ellis, Davis, & Rummery, 1999).

In the present study, Service Coordinators (SCs) can be referred to as SLBs; they establish vertical relationships within IDD organizations with the families and individuals they serve, and engage in horizontal relationships with SSA workers as they advocate for SSI on the behalf of individuals with IDD. Together, they form a “web” within the SSI application process. However, because of individual and categorical differences as well as the imposition of work demands, SCs may have different systemic experiences than families. Given the participation of families and SCs in the application process for SSI, it is integral to understand both of their perspectives in order to capture the collective frontline experiences associated with SSI. The inclusion of SSA workers is also warranted, however, it is beyond the scope of the present study.

Purpose

The present research uses a street-level lens to understand frontline experiences of families and SCs with SSA/SSI. More specifically, a pilot study was conducted to survey family members and SCs regarding their experiences with the SSI application process for individuals with IDD. The study focused on the parts of the application process that facilitated success and barriers that hindered the procurement of benefits, and also elicited suggestions for improvement of the process. As such, the aims of this study are to (1) describe experiences in the SSI application process that are unique to SCs and families, (2) describe and compare experiences shared among SCs and families, and (c) identify and compare recommendations that SCs and families perceive as helpful to improving the application process.

Methodology

Overview

In 2013, two surveys (i.e., one for SCs and one for families) were constructed from focus groups and interviews with SCs and family members of individuals with IDD. (Further detail regarding survey development is presented later in the article.) Surveys were uploaded to SurveyMonkey with links disseminated through electronic mail to organizations serving individuals with IDD throughout the eight western counties of New York State, as well as several affiliated networks with social media pages or listservs in the same region. In addition, two organizations with which the researcher had prior affiliation sent hard copy letters with the survey link to families they identified as having recently gone through the process; one of the two organizations provided a second mailing with paper-and-pencil surveys. In order to ensure the privacy of families being served, organizations did not permit the researcher to have access to personal contact information. Furthermore, families were able to request paper-and-pencil surveys from the researcher by phone if they did not have Internet access. As such, it is unclear how many families actually received the information, thereby limiting a calculated response rate and the interpretation and generalizability of findings.

All SCs and approximately 85% of family respondents completed the survey online. Data from paper surveys were manually entered by the researcher into the data file. All participants were eligible for an incentive (i.e., $10 gift card) following survey completion. To ensure anonymity of survey responses, participants either sent an e-mail or a postcard (in the case of the paper-and-pencil surveys) to the researcher requesting the incentive. Data collection lasted for 3 months.

Instruments

Developing the surveys

Following approval by the Institutional Review Board, the researcher provided brief presentations regarding the research initiative and recruitment to the SC department at two IDD organizations with which the researcher had a prior relationship. E-mail reminders for recruitment were periodically sent by the researcher to designated contacts in each organization for intradepartmental dissemination. SCs were encouraged to share the information with their families. Participants were recruited over a 2-month period during which time the researcher also recruited families at a weekend training provided by a community resource organization for parents of individuals with IDD. After providing informed consent, participants were queried based upon their personal experiences regarding the strengths and barriers associated with the application process for SSI, as well as recommendations for improvement. Two focus groups and five interviews were conducted in private meeting rooms with SCs. Eleven family members were interviewed at their homes or in another private location. All participants were provided a $10 incentive. SCs were also permitted to participate in the research on paid work time. Focus groups and interviews were audio recorded and transcribed by a third party.

Interviews were analyzed using Atlas.ti 7 and open-coded for major themes. Open-coding is the use of conceptual labels developed to identify information as it emerges from the data (Charmaz, 2007; Glaser, 1978). The codes and data were subsequently used to create two surveys (i.e., SC and families) comprised of unique and shared items in multiple choice format and Likert scaled responses (e.g., 1 strongly disagree to 5 strongly agree). Language of items reflected the respective roles and experiences of prospective respondents (i.e., the collective experiences of SCs; the individual experiences of families).

Although the family survey included individual-specific items (e.g., After completing the initial application, how long did it take to hear whether you were approved or denied?) and the SC survey included agency-specific items (e.g., The agency I work for has a benefits specialist to help with paperwork associated with SSI benefits) and role-specific items (e.g., I have had difficulty communicating on behalf of an individual/family with workers at SSA), both surveys were also comprised of common items. The key domains with items shared by family respondents and SCs included experiences with initial applications, interviews and evaluations, redeterminations, appeals process, general experiences and challenges, and recommendations for improvement. Sample items included “My experience with the initial interview(s) was/has generally been positive” and “The person(s) doing the evaluation/assessment was/have been sensitive to the individual's disability.” The family survey was comprised of 100 items and the SC survey was comprised of 83 items.

Two external researchers and expert panels comprised of SC supervisors and benefit/entitlement specialists reviewed the surveys. Two African American SCs reviewed the family survey to ensure cross-cultural sensitivity in language and terminology. Following minor revisions in the wording of several items, surveys were uploaded to SurveyMonkey and pilot tested among several SCs, SC administrators, and family members prior to dissemination. Survey instructions noted that items and responses were about experiences with SSI, not SSDI. Families were instructed to respond based on their individual experiences and SCs were instructed to respond to items based on their overall experiences. Given several considerations such as the stepwise application process, some sections of the surveys (e.g., experiences with an evaluation) were not applicable to all respondents. Thus, the average completion time ranged from approximately 15 to 30 min.

Data analysis

Despite the use of skip logic in the online survey, several errant responses were noted (i.e., some respondents answered items which they should not have or provided responses that did not follow preceding items) and were subsequently addressed through data management. Data from eight items regarding online services associated with SSI were excluded from analyses due to inaccurate wording of items.

Survey responses to Likert-scaled items were dichotomized to contrast agree/strongly agree with all other responses. Chi-squares were used to analyze differences on individual items between family respondents and SCs. Corrections were not made for family-wise error rate given the study's preliminary nature, the small sample size, and the desire to identify where differences may exist that warrant further attention in future research. Responses to individual items with minimal between-group variance were averaged.

Results

Respondents

Respondent demographics are summarized in Table 1.

Table 1

Family Respondent and SC Characteristics

Family Respondent and SC Characteristics
Family Respondent and SC Characteristics

Family respondents

Of the 122 family members who participated, 83% were female and 92% were Caucasian. Nearly 61% of family respondents were between 40 and 59 years old. Although 9% were currently going through the SSI application process, 41% indicated that they had done so within the past 2 years.

Service coordinators

Of the 122 SCs who participated in the survey, 93% were female and 98% were Caucasian, with 65% between 20 and 39 years old. Although 31% were SCs for less than 2 years, 28% held the position for 5 to 10 years, and another 25% for more than 10 years. Twenty-six percent of SCs were currently assisting families with the application process whereas 52% indicated that they had done so within the past year. Approximately 35% of SCs worked for an agency that had specific personnel contacts at SSA with whom they communicated and nearly 60% worked for an agency that had a benefits specialist and that provided family trainings on benefits.

Unique Experiences

Family respondents

Experiences unique to family respondents were based upon their individual claims and comprised of their experiences with initial application; interviews; denial, appeals, and redeterminations; and challenges.

Initial applications

As noted in Table 2, family respondents first learned about SSI from a variety of sources, with more than one third having learned about it from an SC. Approximately half (52%) of family respondents completed the initial application independently.

Table 2

Sources of Initial SSI Information and Application Support Among Family Respondents

Sources of Initial SSI Information and Application Support Among Family Respondents
Sources of Initial SSI Information and Application Support Among Family Respondents

More than one half of 109 initial applications were filed with intellectual disabilities (30%) or autism spectrum disorders (25%) as the basis for the claim as noted in Table 3. In addition, 65% of applications were approved for SSI benefits, with 44% receiving notification within 2 months of filing the claim. Percentages of denied applications within a diagnostic category ranged from 10% (cerebral palsy) to 71% (Other). Reasons for denial were not elicited from the respondents.

Table 3

Primary Diagnoses as Basis for SSI Application by Initial Outcomes

Primary Diagnoses as Basis for SSI Application by Initial Outcomes
Primary Diagnoses as Basis for SSI Application by Initial Outcomes
Interviews

Eighty-five family respondents indicated that they were required to do an initial interview for SSI, of which 54% (n  =  46) indicated that they had taken time off from work for the interview. However, understanding the impact of this is limited given that employment information was not elicited during data collection. Slightly more than one third (35%) of family respondents indicated that they took their children out of school in order to attend the interview, of which 41% (n  =  15) indicated that it was difficult to do so (e.g., given the nature of their disabilities and behavior). Compared with family respondents who went through the application process more than 2 years ago, those who did so within the past 2 years noted that fewer interviews required individuals with IDD to be present (14 compared to 23) and represented an increased use of either phone interviews (17 compared to 11) or no interview at all (6 compared to 3).

Denial, appeals, and redeterminations

Of the 36 family respondents whose claims were initially denied, 26 chose not to appeal the decision. Although thinking “it would not matter” was the primary reason cited for not appealing, 23% stated that they “did not know what to do.” Other reasons included that the appeal process would be too much work and that the household income was too high. Of the 10 who went through the appeals process, most indicated that (a) the experience was overwhelming (80%), (b) going before the judge was intimidating (70%), (c) the support of Neighborhood Legal Services was needed (60%), and (d) the support of an SC was helpful (60%). In addition, 40% indicated that hiring an attorney was a financial burden. Thirty percent of family respondents who appealed received a final decision within 6 months, whereas 40% indicated that it took more than 1 year.

Twenty-nine family respondents indicated that they had to participate in the redetermination process as their child who had been previously approved for SSI reached their 18th birthday. Most (n  =  26) of the 29 family respondents indicated that they were re-approved, however, at the time of the survey, two were awaiting a decision.

Challenges

Various challenges existed for family respondents, including (a) multiple household members with disabilities, (b) understanding the SSI application process, (c) transportation to appointments, and (d) understanding differences among benefits and services. More specifically, nearly 28% of family respondents indicated that they had more than one individual with a disability in their household of which 42% perceived that the assessment of income and resources was unfair given the demands of multiple persons with disabilities.

Forty-percent of family respondents indicated that it was a considerable challenge knowing what to do throughout the SSI application process; this was consistent even among those who had previously participated in an SSI/benefits training. In addition, 62% of family respondents indicated that they were unsure of what to do following the initial determination.

Transportation to appointments for SSI was a challenge for one quarter of family respondents, however 42 family respondents indicated that this was not applicable to their circumstances. Reasons for transportation being a challenge were not solicited.

One half of family respondents indicated difficulty understanding the differences between SSDI and SSI, and 60% were confused that their child was eligible for developmental disability services but not for SSI. Among those awarded SSI, 58% of family respondents indicated that they had experienced disruptions in receiving their monthly SSI check, of which 35% found it to be a considerable challenge.

Service coordinators

Experiences unique to SCs were role-centered, reflecting their abilities and communication. Of 114 SCs who responded, a majority perceived themselves as the “go-to” person for families when they had difficulty with SSI or with SSA workers (62%) or needed help understanding SSI paperwork (72%). In addition, more than one third of SCs (41%) indicated that SSA workers failed to fully understand SCs' role and one half of SCs had difficulty communicating on behalf of individuals with SSA workers and received conflicting information from them. Despite SSA's reliance upon a general toll-free number, a majority (84%) of SCs indicated that speaking with a specific contact person at SSA was more helpful. More than half (59%) of SCs indicated that they had greater difficulty helping individuals living with families or independently than those living in agency-operated residences, however, 35 SCs indicated that this item was not applicable.

Shared Items Among Family Respondents and SCs

The surveys queried aspects of the SSI application process that were common to both family respondents and SCs, including interviews and evaluations, experiences with SSA workers and at SSA offices, challenging experiences, and recommendations to improve the application process.

Interviews

After a single-screening item, 91 family respondents and 64 SCs indicated that they had attended an interview for SSI benefits. Two thirds of all respondents agreed that the interview was a positive experience and of a reasonable length of time. Similarly, two thirds (66%) of family respondents and three quarters (75%) of SCs agreed that interview questions were relevant to the individuals' needs and circumstances. About 52% of all respondents indicated that the interviews afforded privacy, however, family respondents (57%) agreed significantly more often than SCs (39%) that interview questions were sensitive to individuals' disabilities, χ2(1, N  =  155)  =  4.91, p < .05.

Experiences with evaluations

After several screening items, 38 family respondents and 18 SCs indicated that they accompanied individuals during evaluations for SSI. As such, small sample sizes have reduced statistical power. Although half of all respondents indicated that evaluations were sensitive to individuals' disabilities, 55% of family respondents and 39% of SCs indicated that evaluations were appropriate given individuals' abilities. About 58% of all respondents noted that evaluation questions were directed only to the individual with disabilities.

Quality of experiences with SSA workers and offices

Family respondents generally endorsed characteristics of SSA workers and office experiences more favorably than SCs, with significant (p < .05) differences on seven items as indicated in Table 4. However, on average family respondents and SCs similarly endorsed the following items: SSA workers' provision of helpful answers to questions (64%) and resolutions to problems (51%); SSA workers' sensitivity to disabilities (54%); and experiences with appointments (57%) and the amount of paperwork (34%) were reasonable.

Table 4

Quality of Experiences With SSA Workers and Offices

Quality of Experiences With SSA Workers and Offices
Quality of Experiences With SSA Workers and Offices

Challenging experiences

Although family respondents generally endorsed components of the SSI application process as challenging less often than SCs, on average 65% of all respondents indicated that understanding SSI paperwork was a challenge. Similarly, a majority of all respondents found the redundancy in questions and paperwork to be a challenge yet SCs (85%) were significantly more likely than family respondents (69%) to endorse this item, χ2(1, N  =  216)  =  8.30, p < .01.

Family respondents, in comparison with SCs, were significantly less often challenged by having to procure approvals from managed care companies or prescriptions from doctors for evaluations, χ2(1, N  =  178)  =  13.61, p < .01 and having to start an SSI application over after having missed paperwork or appointments, χ2(1, N  =  115)  =  15.02, p < .01. However, interpreting these findings is limited by the number of respondents for whom the items were not applicable. (Forty-three SCs indicated that “having to get approval from managed care or prescriptions from doctors for evaluations was not applicable.” Seventy-six family respondents and 34 SCs indicated that “having to start an application over after missing paperwork or appointments” was not applicable.)

Recommendations for improvements

At least 50% of all respondents endorsed 15 of 16 recommendations as having the potential to considerably improve the SSI application process as noted in Table 5. A recommendation to improve the SSA office environment (e.g., making it more welcoming and increasing privacy) received the least support overall (51% of family respondents and 48% of SCs). With the exception of two recommendations regarding the assessment of income and resources, family respondents endorsed recommendations less often than SCs with significant differences on seven items. The five recommendations most highly endorsed by family respondents (≥ 77%) were among those most highly endorsed by SCs (≥ 86%), including (a) ensuring clarity of paperwork, (b) increasing transparency of the application process, (c) simplifying the application process, (d) having a consistent contact person for an individual case, and (e) simplifying the re-determination process.

Table 5

Recommendations for Improving the SSI Application Process

Recommendations for Improving the SSI Application Process
Recommendations for Improving the SSI Application Process

Discussion

The present research explored the experiences of family members and SCs with applying for SSI on behalf of individuals with IDD, with particular emphasis on the parts of the SSI application process that facilitated success and barriers that hindered the procurement of benefits, and also elicited suggestions for improvement of the process. Both families and SCs play a significant role in procuring SSI for many individuals with IDD. Although families and SCs represent different roles, likely have diverse levels of investment in the individuals with IDD, and potentially have different experiences based upon personal opportunities (e.g., education, employment), they were generally consistent in their appraisals of the application process. Although differences were observed, some differences reflect increased criticism among SCs which might be attributable to their training and collective experiences with SSI. Other differences were directly related to group-specific circumstances, such as families having greater concern regarding income and resources, and SCs having increased emphasis on factors that would facilitate their work with individuals and families. Nonetheless, evidence from both SCs and families provides a corroborated argument for systemic improvement.

Information and Support: Availability, Accuracy, and Improvement

Many family respondents first learned about SSI from sources other than SCs and often completed the application without the assistance of SCs, however SCs were the source of initial information and support for a number of families. Although family respondents were not directly queried regarding their reliance upon SCs, SCs indicated that they frequently were a source of familial support with information and guidance on SSI-related issues. About two thirds of all families and SCs indicated that it was challenge to understand SSI paperwork, yet SCs worked for agencies that often had benefits specialists and specific contacts at SSA, and likely benefitted from the cumulative and additive impact of trainings and prior experiences. Thus, relevant and necessary information may be more readily accessible to SCs and subsequently to families through SCs. In addition, SCs may be more accessible to families given their on-going relationship as well as through direct contact numbers in contrast to the general hotline for SSI. However, the general difficulty in understanding suggests a need for greater transparency and clarity, as well as lay terminology, in the frontline implementation of SSI policy.

Although family respondents consistently rated SSA workers more positively and general experiences as more reasonable than SCs, both family respondents and SCs noted considerable challenges in their interactions with SSA workers whether in person or over the telephone. For example, half of all respondents indicated that they did not receive helpful resolutions to problems from SSA workers. Given that contact with SSA workers is often an integral part of the application process, increased attention to various personnel characteristics (e.g., customer service skills, problem-solving strategies, sensitivity training) is warranted. In addition, (a) a consistent contact person at SSA for a given claim, (b) increased online services (e.g., online chat person, secure web site for e-mail correspondence and to check approval status, the ability to receive paperwork electronically), and (c) increased accessibility to appointments through increased hours of operation at SSA (e.g., evening hours) would further facilitate communication and thus, the application process.

Despite the dynamic role of SCs, there is a need for improving the relationship between SCs and SSA, with an emphasis on facilitating communication and increasing understanding by SSA of the SC role. This disconnect may be likened to a similar one found between SSA and many school systems, particularly with transitional services (Loprest & Wittenburg, 2005). Through increased awareness of the SC role and other mechanisms of improvement (e.g., revising SSI forms to indicate whether or not an individual receives SC services, SCs proactively receiving duplicate copies of paperwork sent to families), the gap between SCs, SSA and families can be narrowed and the application process facilitated. Although SCs and SSA workers have different vertical allegiances (i.e., IDD organization and policy, and SSA, respectively), they inherently share a horizontal relationship with each other as SLBs (Hupe & Hill, 2007). As such, open communication and continuity of relationships would benefit not only the workers but the families they serve as well (Finlay & Sandall, 2009). Various recommendations were endorsed to facilitate the application process, however, in some cases (e.g., sending SCs duplicate copies of paperwork) concerns regarding confidentiality would need to be proactively addressed.

Additional Challenges and Concerns

A majority of family respondents and SCs felt that the amount of paperwork for SSI was unreasonable. As such, many advocated for decreased redundancy in paperwork and the use of simplified language in forms and correspondences. In addition, about a quarter of families indicated that transportation to appointments was a challenge thus suggesting a concern regarding accessibility. Furthermore, a quarter of families and half of SCs indicated the lack of privacy during the interviews. Although SSA and State Disability Determination Services are not covered under HIPAA laws (SSA, n.d. b), the lack of privacy is concerning given the exchange of personal and medical information and the inherent potential for vulnerability among families and individuals with IDD. (Under the Department of Health and Human Services, the Health Insurance Portability and Accountability Act of 1996 [HIPAA; Public Law 104-191] is intended to protect the privacy of individually identifiable health information and regulates health care providers, health care clearinghouses and health plans.)

Such challenges and concerns may be interpreted as systemic and bureaucratic attempts to limit the demand for services (Lipsky, 1980; Summers & Semrud-Clikeman, 2000). Although this is plausible, it presents a potential incongruence between SSI policy and its implementation into practice on the frontlines. Others have noted similar findings. For example, Summers and Semrud-Clikeman (2000) noted that the delivery of Individuals With Disabilities Education Act (IDEA) at the street-level was different from the policy in its “pure form.” Differences were attributed to the transformation of policy through multiple factors, including coping mechanisms by those implementing the policy and negative work conditions.

Reconsidering the Assessment of Income and Resources

The nature and impact of an individual's disability and his/her family's income and resources are integral to the SSI determination process; however, this research highlighted the need to also consider an individual's level of supports. For example, one family noted that the cost of their child's specialized diet exceeded $15,000 a year, however, this was never considered in his eligibility determination. In addition, more than a quarter of the families in this study indicated that they had more than one individual with a disability living in their household. Such families were twice as likely as those with only one individual with a disability to indicate that disruptions in their SSI checks was a significant challenge. Previous research has suggested that 3% of U.S. households with children had more than one child with a disability and 30% of households with children with disabilities were also comprised of adults with disabilities (Ghosh & Parish, 2013).

As families with individuals with disabilities are more likely to be poor and experience greater material hardships in comparison to other families (Emerson & Hatton, 2009; Parish, Rose, & Andrews, 2009), and the U.S. poverty threshold–often used as eligibility criteria for many social welfare programs–fails to sufficiently identify families with unmet basic needs (Parish et al., 2008), it is not surprising that many families in the present study indicated that the assessment of income and resources to determine eligibility for SSI was perceived as inequitable. As services move increasingly toward individuals with IDD remaining with their families and in the community, there is a commensurate need to consider the circumstances implicated in the comprehensive costs of caregiving and in ensuring quality of life; among them is the ongoing need for Medicaid, for which individuals who receive SSI are categorically eligible in most States (SSA, 2013b).

Increasing Sensitivity

Family respondents and SCs often noted that interviews and evaluations lacked sensitivity to the nature of individuals' disabilities and that evaluations were inappropriate to the individuals' abilities, with questions often directed solely to the individuals with IDD. As such, SSA workers and those involved in any evaluations, would benefit from IDD-specific trainings. Notably, SCs were more sensitive to this issue than family respondents, perhaps related to the influence of employment in IDD organizations and training in person-centered planning (Claes, Van Hove, Vandevelde, van Loon, & Schalock, 2010). Furthermore, from a self-advocacy perspective it is important to note that, although individuals with IDD may identify with the broader community of persons with disabilities, they also recognize their uniqueness that may set them apart (e.g., nonvisible disabilities such as intellectual disabilities; Caldwell, 2011).

In addition, it is important to recognize the particular stigmas associated with IDD and the differences in the complexity of necessary supports (Caldwell, 2011). For example, for someone with more profound intellectual deficits it is important to consider the individual's input, but it also becomes appropriate and necessary to solicit information from family members and perhaps service providers (e.g., SCs). Likewise for an individual with significant maladaptive behavior related to his/her diagnosis, it may be contraindicated to require him/her to be present for a lengthy office interview. Although the survey did not elicit examples of insensitivity, examples were extracted from the preliminary focus groups and interviews from which the surveys were constructed.

Emerging Trends

The application process for SSI is a challenge amid a system that is difficult to navigate, yet, there may be emerging some beneficial trends. Although few families indicated that they had actually participated in SSI/benefit trainings, there appears to be an increasing tendency toward doing so when comparing those who went through the application process over the past 2 years with those who went through the process more than 2 years ago (13 out of 57 vs. 6 out of 56). Another trend may be developing as well with an increasing number of families initially learning about SSI from a variety of sources such as family members, friends, employment, and support groups. The increased connection of families and organizations as well as increased awareness afforded through social media, and the growing number of persons with disabilities, particularly autism (Boyle et al., 2011), may be among the factors influencing such trends. In addition, there appear to be fewer interviews requiring individuals with IDD to be present, with an increasing use of either phone interviews or no interviews. Given that many families seeking SSI for individuals with IDD already experience hardships (Emerson & Hatton, 2009; Parish et al., 2009), decreasing reliance upon in-person interviews and minimizing associated demands (e.g., taking off from work, taking a child out of school) may prove beneficial.

Limitations

Initial recruitment for focus groups and interviews presented several obstacles. The recruitment of SCs for focus groups was complicated by diverse work schedules; therefore, it became necessary to utilize individual interviews. Although each method has limitations (Halcomb, Gholizadeh, DiGiacomo, Phillips, & Davidson, 2007; Opdenakker, 2006), allowing individual interviews increased the number of SC participants. Similarly, family recruitment was complicated by emergent issues such as confusing the role of the researcher for a contact person for problems with benefits and a lack of understanding regarding the differences between SSDI and SSI (AAP, 2009). In an effort to facilitate recruitment, the language used in the recruitment flyer was revised to reflect a more common understanding among families (e.g., from “disability determination process” to “experiences with getting SSI for your child”).

SSI is a federally funded program, however, it is possible the experiences of this study's respondents are not representative of the nation as a whole, and, as such, conclusions should be interpreted with caution. The present sample represented a 65% award rate for initial applications in contrast to approximately 30% noted in national data (SSA, 2013b); however, the current study specifically targeted the IDD population. National data regarding the award-application ratio for individuals with IDD diagnoses could not be obtained. Although the survey noted that potential respondents could have been among those denied benefits, given the higher frequency of awards and a lack of comparable national data, the generalizability of findings is unclear.

The study sample lacks gender and racial diversity. Although the lack of gender diversity is reflective of the preponderance of females in the field of human services and role of caregiving, the U.S. Census Bureau (2014) suggests far greater racial diversity than the 3% represented in this study (i.e., respective metropolitan city: 50.4% Caucasian and 38.6% African American). Similarly, the findings do not represent individuals from other ethnic backgrounds, particularly those for whom English is not a primary language. Previous research has noted barriers associated with language and poorer education in parents' ability to access and understand information regarding benefits such as SSI (Loprest & Wittenburg, 2005). The structure and length of the survey, which reflects the complexity of the SSI application process, may have been a deterrent especially for those with compromised literacy skills.

Many families represented in this study did not initially learn of SSI from SCs or have their assistance in completing the application, however, some families had support from SCs. For those affiliated with agencies and assigned SCs, it is likely that they are better educated on benefits and are likely to receive more assistance than those who are not using such services. Additional factors such as different models of service coordination, the size of SCs caseloads, the frequency of contact between SCs and families, as well as style or process of service delivery, have been identified as sources of variation in SC outcomes yet were not accounted for in the present study (Bruder & Dunst, 2008; Harbin et al., 2004).

The use of online surveys facilitates broad distribution and administration and decreases the likelihood of socially desirable responses (Dillman & Smyth, 2007). However, it has inherent limitations such as limiting access to disadvantaged families (Heiervang & Goodman, 2011). Families receiving SSI are likely to come from lower socioeconomic status (Loprest & Wittenburg, 2005) and may be less likely to have access to Internet and computer technology. However, this limitation was considered in the study design and methodology which included the availability of paper-and-pencil surveys. This study's use of multiple recruitment modalities, including online social media and listservs that facilitate information sharing, in conjunction with the inability to track the dissemination of flyers and paper-and-pencil surveys by organizations, inhibit the ability to determine the representativeness of the sample. In addition, surveys elicited responses based on one's experiences. In some cases, respondents had gone through the application process years prior; thus, recall bias is a potential concern.

During data collection, despite the integration of skip logic in the online survey, there were several errant responses with some participants either responding to items that they should not have or responding in a way that did not follow preceding items. This concern was addressed through data management and statistical analyses. In addition, the structure and content of several survey items did not afford the ability to differentiate participant responses in terms of difficulty with SSA workers or difficulty with SSI paperwork. Separating concerns regarding the federal agency (i.e., SSA) from the benefit (i.e., SSI) may prove beneficial and provide greater clarity of specific issues. Similarly, the surveys did not elicit additional open-ended responses from participants.

From a theoretical perspective, as street-level bureaucrats, SCs and SSA workers are “the last link in the policy-making chain” and it is through their interaction with families “that formal social policy comes to life” (Rice, 2013, p. 1039). Although the present research included SCs, future research should also consider the perspective of the SSA workers in order to more wholly understand frontline experiences. In addition, the theory suggests some degree of detachment between SLBs and clients given the nature of the work and defenses to manage related stress. Although SCs and families were not queried regarding their specific relationships, they are aligned in many of their experiences and recommendations for the application process. If SCs were detached from their families, one might expect greater incongruence. Previous research has cited similar limitations with the theory of SLB in its application to particular populations (Summers & Semrud-Clikeman, 2000).

Conclusion

Amid a dearth of research, this study was an initiative to better understand frontline experiences indirectly and directly associated with the application process for SSI. It presents a preliminary evaluation of the various components of the application process, recommendations for improvements, and a foundation for future inquiry. Although the application process for SSDI has advanced through the introduction of an electronic claims system (Barnhart, 2005/2006), the system for SSI continues to lag behind. From the perspectives of both SCs and family respondents, it is evident that the process of applying for SSI could be enhanced through various systemic and environmental improvements that are sensitive to the needs of individuals with IDD as well as their caregivers and service providers.

Findings of the present study have potential implications for organizations, as well as advocacy and parent groups, regarding training needs and may serve as an impetus for lobbying for change. Future research should consider (a) the perspectives of SSA workers, individuals with IDD, and parents with disabilities; (b) comparisons between families with and without SCs; and (c) interstate comparisons given the potential influence of state-level policies. This street-level study presents with “potential to help policymakers and managers confront the fundamental question of how to create policy and organizational structures that are conducive to good street-level work” (Brodkin, 2008, p. 327). With the instability of the economic environment, a rising number of individuals with disabilities and an ever-growing need to do more with fewer resources, increasing systemic efficiency for SSI becomes progressively more important.

Acknowledgments

The research reported herein was performed pursuant to a grant from Policy Research, Inc. as part of the U.S. Social Security Administration's (SSA's) Improving Disability Determination Process Small Grant Program. The opinions and conclusions expressed are solely those of the author(s) and do not represent the opinions or policy of Policy Research, Inc., SSA or any other agency of the Federal Government.

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Author notes

John M. Keesler, University at Buffalo, School of Social Work.