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Work 48 (2014) 441–451 DOI 10.3233/WOR-131781 IOS Press
Aging with a disability and state vocational rehabilitation services Pat Brown∗ and Kurt Johnson Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA
Received 7 September 2012 Accepted 3 February 2013
Abstract. BACKGROUND: Disability prevalence in older adults is increasing. Given the low rates of employment among people with disabilities, especially those aging with multiple sclerosis (MS), spinal cord injury (SCI), late effects of polio (LEP), and muscular dystrophy (MD), services from federal-state vocational rehabilitation (VR) programs could positively impact employment status. OBJECTIVE: To describe VR services for individuals aging with MS, SCI, LEP and MD and the impact of aging on employment status. PARTICIPANTS: Thirteen Washington State VR counselors and 26 individuals, 45 to 65 years old, with MS, MD, LEP or SCI. METHODS: We examined national Rehabilitation Services Administration data (2006, 2007), including case closure, service outcomes and other demographics. We then purposively selected Washington State for our study. Interviews provided consumer and counselor perspectives on the components of successful case closure (employed) and the impact of aging and disability on employment. RESULTS: Washington State and national data were similar. Organizational and individual factors influence the effectiveness of VR services. CONCLUSION: People who could benefit from VR services are not being served; those who are served, are getting neither comprehensive services nor high quality outcomes. Additional research is needed to understand the variables associated with effective use of VR services. Keywords: Employment, spinal cord injury, multiple sclerosis, muscular dystrophy, late effects of polio
1. Background Currently, 37.3 million (12.4%) of the US population is over 65 years of age. By 2030, it is expected that this rate will rise to 20.4%, making this group the fastest growing age demographic [1]. Consistent with the general “graying” of the US population, the prevalence of disabilities in older adults is increasing in part because of increased prevalence of disabling conditions in later adulthood. In addition, individuals with ∗ Corresponding author: Pat Brown, Department of Rehabilitation Medicine, University of Washington, Box 357920, Seattle, WA 98195, USA. Tel.: +1 206 543 6387; Fax: +1 206 543 4779; E-mail: [email protected].
disabilities are living into later adulthood because of advances in medical knowledge and practice. In 1940 the average life expectancy after a spinal cord injury (SCI) was just 18 months. In 2005, the same individual with SCI is expected to live approximately 85% of a “normal” life span (∼68 years) [2]. By way of comparison, in the past 50 years the survival rate for individuals with SCI has increased 2,000%, as opposed to only 30% for people in general [3]. Although individuals with disabilities are living longer, they are confronting higher levels of secondary conditions and barriers to participation than people in general. For example, cardiovascular data from individuals with SCI indicate that they may “age faster” than those without SCI [4,5]. Moreover, older individuals with disabilities report higher rates of unem-
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ployment than older individuals who do not have a disability [6]. These findings suggest the possibility that disability duration (e.g., time since SCI or time since emergence of significant Multiple Sclerosis (MS) symptoms) may be at least as important as chronological age when examining the effects of aging on functioning and secondary conditions [7]. Although studies indicate important associations between age and the frequency of unemployment [6] and some secondary conditions [8–11], the majority of these studies employ cross-sectional research designs that compare functioning or the frequency of conditions across different age cohorts. The secondary conditions that individuals with disabilities develop as they age may contribute to changes in physical and psychosocial functioning over and above any effects of the disability itself. The most common secondary symptoms reported by individuals with SCI, MS, muscular dystrophy (MD), and late effects of polio (LEP) (also known as post-polio syndrome), include pain [12–19], fatigue [14,15,18, 21], weakness [14,20], pressure ulcers (associated with wheelchair use or marked deactivation) [22–24], urinary tract infections (associated with the use of external catheters) [16,22,23], and bladder/bowel dysfunction and in MS, cognitive dysfunction [16,17,21]. Despite preliminary findings highlighting an increased risk for secondary conditions as individuals with disabilities age, little empirical work is available to evaluate the impact of these secondary conditions on aging with disability. To date, the only studies that examine the moderating effect of age on the impact of secondary conditions have focused on pain. One of these studies used data from 6,132 individuals with SCI who were enrolled in a National Spinal Cord Injury Statistical Center Database [25]. Results of this study indicated that older age was associated with an increase in pain interference in day-to-day activities, with the highest level of interference among those who were 75–79 years of age (p < 0.01). However, the measure of pain interference used in this study was a single item taken from the 12-Item Short Form Health Survey (SF-12), and the psychometric properties of this single-item measure have not been established. Interestingly, in this study, the trend for increased pain interference with age appeared to decrease dramatically among those participants over 80 years of age, perhaps related to attrition effects (i.e., individuals who live to be 80 years and beyond may be healthier than individuals who were previously alive but died before they were 80 years old). In a cross-sectional study con-
ducted by one of our investigators, older adults (i.e., those > 60 years of age) living with either SCI or a neuromuscular disease reported slightly higher average pain in the past week as compared to their younger peers (i.e., those < 35 years of age; p < 0.05) [26]. Physical disabilities such as MS, SCI, LEP and MD often affect individuals at a young age. Particularly with LEP, individuals have often compensated for the functional limitations associated with the initial experience with polio only to find those strategies less adequate as their function changes in middle age. None of these disabilities necessarily significantly reduce the lifespans of individuals. Issues around employment, therefore, can be paramount as people age with increasing functional limitations. Little is known about the impact of aging on employment for individuals with MS, SCI, MD or LEP. Approximately 90% of individuals diagnosed with MS are employed prior to their MS diagnosis [27]. However, as few as 20% to 30% remain in the workplace five years post-diagnosis [28], despite the fact that many (40%) who are unemployed report a desire to return to work [27,28]. There have been few studies about vocational rehabilitation and individuals with MS. In a study in the United Kingdom , Sweetland, Riazi, Cano, and Playford concluded that individuals with MS need assistance with managing the interaction between the impairments caused by MS, the physical environment, and the demands imposed by the work (p. 1183) [29]. Studies conducted in the United States (U.S) have found that interventions to preserve employment are more successful than those aimed at returning people to work after having left. Studies have also found that issues impacting employment are both related to the disease and to the work environment [30, 31]. A few recent studies have examined issues around aging with MS, concluding that individuals with MS leave work earlier than the national average due to disability [32]. There is no evidence with respect to the impact of aging and secondary conditions related to MS on employment or on the potential role of vocational rehabilitation interventions to prolong working years for people aging with MS. Individuals with SCI who are returning to work may require assistive technology, job placement and support services and counseling [33]. However, as with individuals with MS, little is known about the impact of secondary conditions on the continued employment experiences as they age. Krause found that it is extremely unlikely for individuals above the age of
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55 years with SCI to return to work unless they are returning to their pre-injury job. Those who do return to employment are not likely to remain until the traditional retirement age (1998, p. 623) [10,35]. Krause also found that employment rates after age 50 years continued to decline for those returning to work, although the reasons for this decline in employment rate and early retirement are not clearly determined beyond the relationship between personal factors, such as increased education and functional status, and decreased medical complications as predictive of employment [34–36]. As with individuals with MS, those with LEP experience early educational and professional options at the same level as their non-disabled siblings [37]. However, 80% of the more than 1,000,000 survivors of poliomyelitis living in the US experience symptoms consistent with LEP after age 40 years [38]. It is not uncommon that these symptoms, which include increased weakness, fatigue and pain, are severe enough to interfere with work and result in significant employment loss [6,37,39]. To date, there is no evidence in the literature with respect to the benefits of symptom management and vocational rehabilitation to extend participation in employment for those with LEP. Finally, we could find no recent literature on the impact of aging with muscular dystrophy, secondary conditions related to MD, and participation in the workforce. Fowler and colleagues found that employment decreased as individuals became older [40]. Of the 157 people with MD that they interviewed, 40% were employed at the time that the study was conducted and 50% had previously been employed. Gagnon and colleagues found that more than 45% of those surveyed with muscular dystrophy had experienced disruption in their work due to disability-related factors [41]. Given the low rates of employment among people with disabilities in general, and people living with MS, SCI, LEP, and MD as they age in particular, it seems as though these individuals could benefit from services from the federal-state vocational rehabilitation programs. In our study, we investigated the number of people served and outcomes nationally as reported by state vocational rehabilitation agencies to the Rehabilitation Services Agency for people with MS, SCI, LEP, and MD who had received vocational rehabilitation services. We also conducted a case study of people with MS, SCI, LEP, and MD who had received services from the Washington Division of Vocational Rehabilitation (DVR) and their DVR counselors to provide a consumer and counselor perspective on the essential
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components for successful closure-as-employed and the impact of aging and disability on employment status.
2. Study design and method We used a mixed methods design [42] to study the impact of existing systems on the employment of individuals with MS, SCI, LEP and MD. Our two-phase design [43] included a quantitative approach to describe the current patterns of employment outcomes for people participating in the vocational rehabilitation system, and a qualitative approach to discover and understand the process variables related to services and outcomes. These process variables included successful closure-as-employed rates by age and disability status, presence of reported secondary conditions and the provision of vocational rehabilitation (VR) services. 2.1. Phase 1: National data set We examined national data collected in 2006 and 2007 by the Rehabilitation Services Administration (RSA) in the US, including the RSA-911 Case Report Data and RSA monitoring reports. These data were the most recent data available at the time of this study. RSA administers the federal-state vocational rehabilitation program in the US and collect these data as part of their program monitoring and evaluation. These data provided us with information on intake, the number of individuals in plan, case closure, outcomes by disability and other demographics. 2.2. Phase 2: Case study We purposively selected Washington State for our case study in order to identify the essential systemic components for successful employment outcomes. We defined successful or positive employment outcomes as (1) successful VR closures, (i.e., individuals reach stability on the job as defined by DVR), and (2) individuals are employed in positions with benefits and wages commensurate to the US Department of Labor’s State Occupational Employment and Wage Estimates. 2.2.1. Protection of human subjects The lead author applied for approval to conduct this study to the University of Washington Human Subjects Division Internal Review Board (UW IRB). The recruitment, consent process and study procedures were approved by UW IRB Committee C.
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2.2.2. Qualitative interviews Following the analysis of the available RSA 911 data, we conducted interviews with key informants, either face-to-face or via telephone, to build a model of the VR process for individuals with MS, MD, SCI and LEP. Key informants included vocational rehabilitation counselors nominated as experts by the state agency director and DVR clients nominated by the participating VR counselors. The 13 participating VR counselors all have Masters degrees and all but one work in urban areas. Counselor experience ranged from two to 22 years with a mean of 11 years. Caseload sizes ranged from 20 to 146 with an average caseload size of 87. Interviews with VR counselors probed for information about both successful and unsuccessful closures in order to identify components essential to successful closures across disability, age, and other pertinent demographic data. Following our interviews with VR counselors, we conducted in-depth interviews with clients of Washington DVR with MS, SCI, LEP, and MD. Participating VR counselors recruited 26 individuals from their caseloads (both open and closed cases) who were between the ages of 45 and 65 years with MS, MD, LEP or SCI as a primary disability cause. In interviews with these DVR clients, we probed for information about the intake process, assessment and plan development, perceived counselor and employment vendor expertise in MS, SCI, LEP, and MD and community factors that affect employment status.
3. Data collection and analysis The two-fold purpose of this study guided the data analysis. For the review of the RSA-911 Case Report Data, we used descriptive reports. Variables included social security benefit status, types of services, type of outcome, wages at closure, etc. Our qualitative analysis consisted of organizing our interview data into categories using a commercial software program (QSR International’s NVivo qualitative data analysis software, version 8). Categories were used to interpret the interview information into overall themes that allowed for comparing and contrasting of information shared by the key informants in the project. To ensure internal validity, we triangulated the data and used key informants to check interpretations throughout the data analysis process and solicited colleagues from among research faculty with qualitative research experience to code sample documents and
interviews to ensure agreement in the development, choice and application of codes. Our primary strategy to ensure external validity is the development of a rich, detailed descriptive case study to provide others with a solid framework for comparison and the development of a model of current VR strategies used by counselors working with individuals who are aging with MS, SCI, LEP and MD, with links to the data. The lead author and a doctoral student with qualitative research experience conducted the interviews. Interviews were typically one to one–and-one half hours long. Interview coding was completed by both the lead author and the doctoral student with inter-rater reliability checks periodically conducted throughout the coding process. For VR counselors, data about caseload, organizational structure, and familiarity with individuals in our populations of interest were collected. We also asked for “stories” to illustrate important issues related to both the provision of services, types of services and outcomes reported for individuals on their caseloads. For clients, we collected data about current employment status, satisfaction with status and wages. We also asked about vocational goals and reasons for seeking services from VR. Half of the participants (both counselors and clients) were interviewed a second time after the preliminary data analysis to validate the themes that were developed. The qualitative interviews were semi-structured using the research questions as guides for prompts. The interviews were conducted either by telephone or in person. All interviews were digitally recorded and the files stored on a secure server. Audio files were transcribed for analysis and spot checked for accuracy.
4. Results 4.1. Demographics During 2006, 2,982 individuals between the ages of 45 and 65 years applied for VR services, listing MS, SCI, LEP (listed as polio in the RSA 911 database) and MD as the primary cause of disability. In 2007, this number increased to 3,757. The primary disability that results in a substantial impediment to employment across all four conditions was reported as either mobility or neurological or both. Secondary conditions are typically assigned by the VR counselor based on interview with the client or counselor observation. No clinical records are required for the assignment of a secondary condition. Over half (67% in 2006; 60%
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Table 1 Race and ethnicity by year: Washington state 2006 2007
White 45 67
Black 4 5
Native American 3 3
Table 2 Gender and primary disability cause by year: Washington state 2006 Male Female 2007 Male Female
MS 11 13 14 17
MD 1 4 2 3
LEP 5 1 8 4
SCI 12 3 15 15
Note: MS (Multiple Sclerosis), MD (Muscular Dystrophy), LEP (late effects of polio), SCI (spinal cord injury).
in 2007) of the individuals in our population of interest listed secondary conditions, primarily psychosocial (interpersonal and behavioral impairments, difficulty coping), cognitive (impairments involving learning, thinking, processing information and concentration) and other physical. The latter category does not include fatigue, weakness and/or pain; these are listed under “general physical debilitation.” Applicants were primarily white males. Approximately one third (38% in 2006, 33% in 2007) obtained a high school diploma or GED, one fifth (20% in 2006 and 2007) reported some post-secondary education, and 35% (2006) to 38% (2007) receiving a certificate or degree. Washington State demographics reflected the national data. As reported in the national RSA 911 database, individuals with MS, MD, LEP and SCI who applied for VR services were primarily white and evenly divided by male and female (Tables 1 and 2). The 2007 participants in Washington State reported higher levels of educational achievement with 47% reporting a degree or certificate compared to the national data (Table 3). 4.2. Outcomes There are seven options for reporting case closure in the RSA 911 database: closed before determined eligible, applicant in trial work experience, employment outcome, services initiated (not employed), determined eligible (pre-services), order of selection, determined eligible (no Individualized Plan for Employment or IPE written). Our two outcomes of interest are employment and services initiated (not employed). In 2006, of the 2,982 individuals in our populations of interest who applied for services, 36% were closed with employment as the outcome and 29% closed with-
Asian 1 5
Pacific Islander 0 0
Hispanic 2 2
out an employment outcome, but were not otherwise disqualified from receiving services. Justification for services initiated (not employed) includes failure to cooperate, disability too severe, transportation not feasible, unable to contact, refused services, death, institutionalization, transferred to another agency, extended services not available and other. The figures for 2007 are similar, with 38% closed with employment as an outcome and 27% closed without an employment outcome. In Washington State, case closures were similar to the national data in 2006; 36% (N = 18) closed with employment as the outcome and 40% (N = 20) received services but were not employed at case closure. The balance were either deemed eligible but did not enter into a plan (N = 7) or were in order of selection (4 = 5). In 2007, the rate dropped below the national average. Fifty-nine applicants received services. Of these, 20% (N = 12) were employed at case closure and 80% (N = 47) were not employed at case closure. Of the12 who were employed, 11 increased their weekly earnings by case closure and all increased the number of hours worked by case closure from hours worked at time of application. At time of case closure, participants reported their primary source of income (personal, family/friends, public support and all other sources). Public support includes Temporary Assistance for Needy Families (TANF), General Assistance, Social Security Disability Income (SSDI), Supplemental Security Income, Veteran’s Administration pension, and Workers Compensation pension. Nationally, across all four disability categories, personal income became the primary source of income for those who were employed at case closure (73% in 2006; 68% in 2007) with 22% (2006 and 2007) listing public support as the primary source of income. In Washington State, personal income was reported as the primary source of income for those employed at case closure (67% in 2006; 62% in 2007) with 22% in 2006 and 31% in 2007 listing public support at case closure. For those who were not employed at case closure, public support was reported as the primary source of income support (54% in 2006; 59% in 2007) with family/friends ranking second (28%, 23%) and personal income a primary source of support for only nine percent of individuals. In Washing-
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P. Brown and K. Johnson / Aging with a disability and state vocational rehabilitation services Table 3 Level of education attained at application by year: US and Washington state US Secondary Educ., no HS diploma High School diploma or GED Post-Secondary Educ., no degree Assoc. Degree or Voc. Certificate Bachelor’s Degree Master’s Degree or higher Total
2006 580 (14%) 1593 (38%) 826 (20%) 497 (12%) 511 (12%) 222 (5%) 4229
Washington 2007 438 (9%) 1684 (33%) 1037 (20%) 789 (15%) 817 (16%) 365 (7%) 5130
2006 7 (14%) 16 (32%) 11 (22%) 7 (14%) 7 (14%) 2 (4%) 50
2007 6 (8%) 22 (28%) 13 (17%) 16 (21%) 14 (18%) 7 (9%) 78
Note: HS (High School), GED (Graduate Equivalency Degree), Voc. Certificate (Vocational Certificate).
ton State, those unemployed at case closure reported public support as the primary source of income (60% in 2006; 65% in 2007) with family/friends ranking second (25%, 24%). 4.3. Services One-fourth to one-half of all VR participants, nationally and in Washington State, received assessment services and VR counseling and guidance. Transportation services and rehabilitation technology were also widely provided nationally and in Washington State. Reductions in Washington State services in 2007 (Table 4) may have resulted from funding limitations while in order of selection. Few VR clients who are aging with MS, MD, SCI or MD receive job assistance or placement services (15–19% nationally: 0 to three percent in Washington State). Nationally, six of the 21 available services are provided to two percent or less of eligible VR clients in our population of interest. In Washington State, 57% (N = 12) of the available services are provided to two percent or less of the eligible clients. 4.4. Qualitative analysis Our qualitative inquiry illustrates (1) the types of services requested by VR clients and (2) factors that may affect the delivery of these services. Four major themes emerged from our analysis, which were categorized into organizational or community factors. Organizational factors include the autonomy of VR counselors to provide services and the extent to which services are (or can be) coordinated among agencies to meet the individual needs of VR clients. Community factors include discrimination in the workplace and access to health insurance. In the following summary, we use pseudonyms for all of our research participants. Services requested by clients: Frank, a DVR counselor, reported that clients often do not want to talk
about vocational goals or services, at least initially; “they talk about stuff that they want” (F210). Clients reported requesting educational services (money for tuition and fees), transportation, and assistive (rehabilitation) technology. Educational services: There were 145 references to education in our interviews, mostly from VR clients. Despite high levels of education prior to seeking VR services, clients were looking for opportunities to either change careers (due to increased secondary conditions related to their disabilities), to make a change within their current career that would result in greater flexibility, such as working from home at least parttime, or attend school in lieu of job search due to difficulty in finding suitable employment. Stuart, a DVR client, decided that, “you know, well, I might as well, I should take advantage, if there’s no jobs out there right now, that this would be the best opportunity, best use of my time is to get back to school and come out of this when they start hiring again, you know, with a skill that I can bring to the table” (S422). Transportation: We had 417 references to transportation, with van purchases and/or modifications the most frequently cited. Counselors reported huge barriers to providing accessible vans due to the cost. The paperwork involved in making the request and the approval and contracting process takes well over two months, on average. Clients clearly reported being unable to pay the $60,000 cost for an accessible van; Sandy, even reported daydreaming about a van, “So there’s just a front seat and a passenger seat. So I can see myself, yeah, I’m already daydreaming and daydreaming about a van” (S48). Rehabilitation Technology: We had 876 references to rehabilitation technology in our interviews. Most referred to requests for wheelchairs or scooters, followed by requests for computers, computer software and smartphones. Home modifications (ramps, bathroom remodels and home offices) were also frequently requested. Counselors reported that rehabilitation tech-
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Table 4 Publically funded vocational rehabilitation (VR) services by year: US and Washington State US Assessment Diagnosis and treatment VR counseling and guidance College or University training Occupational training On the job training Basic remedial training Job readiness training Augmentative skills training Miscellaneous training Job search assistance Job placement assistance On the job supports Transportation services Maintenance Rehabilitation technology Reader Interpreter Personal Attendant Technical assistance Information and referral
2006 (N = 2982) 1867 (63%) 922 (31%) 1582 (53%) 475 (16%) 270 (9%) 33 (1%) 39 (1%) 164 (5%) 73 (2%) 300 (10%) 451 (15%) 540 (18%) 208 (7%) 750 (25%) 345 (12%) 602 (20%) 0 8 (< 1%) 62 (2%) 129 (4%) 412 (14%)
2007 (N = 3757) 280 (61%) 1201 (32%) 1964 (52%) 280 (7%) 276 (7%) 47 (1%) 16 (< 1%) 183 (5%) 72 (2%) 282 (7%) 582 (15%) 716 (19%) 248 (7%) 738 (20%) 390 (10%) 753 (20%) 3 (< 1%) 4 (< 1%) 37 (1%) 180 (5%) 571 (15%)
nology was often more related to quality of life than a specific vocational goal. “He was like I don’t want to go to work, but I want you to pay for my driving training, and I want you to help me buy an accessible van, and I want you – and I said well, we can’t help you with that stuff because your objective is not to go back to work” (T210). 4.5. Service delivery Informants identified several factors that influence both employment outcomes and service delivery. The organizational factors are closely related. VR counselors report that lack of autonomy affects how they deliver services, including their ability to coordinate services not provided by VR, such as housing, income support/supplementation and employment. Counselor Ed describes, “I’ve had a lot of people that are literally on the streets homeless and if they can’t get that under control, you know if they could have rent for one or two months or somehow get stable, I think that would...sometimes they have so much independent living issues where they can’t benefit from any other service and sometimes things like rent can make all the difference . . . ” (E210). Terrie expressed frustration in her limitations as a VR counselor to provide the services that she felt were essential in order for her clients to be successfully employed. “I think it gets in the way more than anything. I mean, it’s really hard not to be a social worker, because
Washington State 2006 (N = 50) 2007 (N = 78) 28 (56%) 23 (29%) 7 (14%) 3 (3%) 30 (60%) 23 (29%) 19 (38%) 10 (13%) 7 (14%) 0 0 0 0 0 0 0 0 0 0 0 0 0 1 (2%) 2 (3%) 1 (2%) 0 20 (40%) 7 (9%) 9 (18%) 6 (8%) 18 (36%) 8 (10%) 0 0 1 (2%) 0 0 0 0 0 5 (10%) 7 (9%)
when people come to us, especially in this economy, there’s a lot of – they’re not just dealing with the lack of a job, a lot of times. They’re dealing with a lack of housing, lack of resources as far as, you know, access to food and you know, just all that kind of stuff. And it’s really hard for me just to stay focused on work, work, work” (T210). VR counselors also expressed frustration with their lack of professional autonomy. Gary described this within the context of getting van modifications approved. Gary lives in a rural area where public transportation is limited, making having an accessible van to get to work essential. He states, “I would streamline that whole van modification step process a little bit more, thing, you know I like the fact that there’s an assistive technology there on board, the air . . . like the supervisors role and the process but I think that once we get, once we gather all the information and we’ve written all the documentations supporting the need for van modification you know probably does make sense to have the area manager approve it because it’s such a big amount but going back to (the state office) and get another approval on top of that seems so redundant . . . ” Counselor Jackie requests simply, “more control over having more flexibility on money to spend.” Clients come to VR with jobs that (1) they are either afraid they will lose because they cannot perform the essential functions or (2) they know they will lose so want to move to something else that is less taxing. Discrimination is discussed at length in 21 distinct in-
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stances in our study. Discrimination is especially problematic for clients with MS. Clients report that MS is grossly misunderstood (e.g. why do you need a scooter one day and not the next?), accommodations are very hard to get unless you need them all the time and flexible jobs (allowing folks to work from home on occasion) are very hard to come by. VR counselor Ed stated that many of his clients experience discrimination, “whether it is consciously or subconsciously . . . because the disability that can be observed and sometimes it’s hard to find open minded networks and open minded people in the community.” Jane, another counselor, said “October is Disability Awareness Month. I never saw that mentioned. I think there needs to be so much more political activity in terms of awareness with on the media level, because it’s sort of like if you’re not present, you’re not in the media. You’re not in TV shows. You’re not in movies. You’re not making a fuss about things. You’re not out there. You’re not getting anything. You’re not getting anywhere. You have to make yourself real visible in this country otherwise you’re invisible. And then if you’re invisible then you’re not worth anything and nobody wants to hire you.” Client Jay spoke of his experiences in trying to get accommodations at work, “I’m not able to travel because I need to take somebody with me, and (my employer) isn’t going to do that for me. That’s not a – they don’t consider that a reasonable accommodation, and that’s held me back in my career, and I’m positive that . . . they have solid rules to prevent discrimination, but you know you’re being discriminated against because you’re in a chair. There’s just nothing you can do about it” (J428). Finally, health insurance (or lack of) is a huge concern to clients and often a barrier to obtaining employment. Clients spoke at length about leaving jobs that they enjoyed or turning down jobs that met their need for flexible hours because the jobs did not include access to health insurance. Counselor June recalled a client who did “not have medical insurance through this job. And she can’t get it, because she doesn’t meet income requirements for, you know, medical programs, you know, for the state. So with her MS , it’s been kind of scary for her not to have medical insurance and she’s still at a point where she’s looking at other job opportunities that may be able to offer her that benefit” (J292). And Marty, a client with SCI, described an oft-cited conundrum, “Well, I think that people who qualify for DVR probably can’t afford to buy health insurance. For instance, [the university that I attended] charged me I
think it was $750 every semester, which is cheap by ordinary standards, you know, for health insurance. But if I hadn’t had money – a little bit of money in savings that I always reported and I just kept that money there and that money just got drained paying for my health insurance. Yeah, it would be nice if they would recognize that in today’s world, we must have health insurance, and we are not destitute enough, many of us, to qualify for Medicaid or Medicare, but we’re not earning – we’re not – we don’t have big incomes because otherwise we wouldn’t qualify for DVR.” (authors’ note: Although the subject believes eligibility for DVR services is dependent on income or earnings, in fact it is not although clients with financial means may be asked to pay for some client services under some circumstances. Our findings indicate that some clients did not adequately understand the eligibility criteria for services.)
5. Discussion From our analysis of the RSA 911 database, we found that very few people aging with MS, MD, SCI, and LEP (3,757 in 2007) have been served by the state federal system and those that have been served had poor outcomes. Also, most clients of the VR programs only received one or two services rather than a comprehensive approach and given the complex employment needs of many people with SCI, MS, LEP, and MD, it would seem reasonable to assume that they would have benefitted from comprehensive services. Although it is difficult to identify an appropriate “denominator” to provide a clear contrast between the numbers of people who potentially could use VR services and those served, if one considers MS, for example, there are currently over 400,000 people with MS in the US [44]. Approximately 30% of respondents in a large crosssectional survey of people with MS reported being employed and it is reasonable to presume that a significant proportion of those are at risk for losing their jobs due to increased burden of disease and secondary conditions. Of those who were unemployed, 40% strongly preferred to work [16]. By extrapolation then, just considering people living with MS, a very small proportion of people who could profit from vocational rehabilitation services are receiving them. Our findings support this. As noted above, both nationally and in Washington State, we found that comprehensive VR services are provided to only 2% of those eligible for services in our populations of interest. Our findings
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also suggest that, despite the need for job placement and support services reported in the literature [33], few receive these services. Through our qualitative study, we have identified potential barriers to VR services leading to positive employment outcomes for people with MS, SCI, MD, and LEP who are in the VR system. There appears to be a disconnect between the role the VR counselor believes he or she should play, or how much autonomy he or she has to be flexible in addressing client need, and the expectation of clients. For example, one of the counselors reported that clients with MS “want to talk about what they want” and not a vocational goal. It is likely that the VR counselor feels it is his or her job to move the client quickly toward a vocational goal and services to achieve that goal. From the client’s perspective, however, more generic counseling about fears, potential changes in physical status, discrimination, education and changing careers, may be preferred as a first step. Counselors and clients seemed to agree that potential discrimination is a significant barrier to employment. Based on reports in the literature on employment discrimination, especially for individuals with MS [45], this is an important issue that should be addressed as part of the counseling process. Many of the clients of VR with MS are working and concerned about losing their jobs [28]. From both the counselors’ and clients’ perspectives, many barriers to employment, such as housing and health insurance, are outside the scope of what VR can do. However, little is known about the barriers people encounter to participating in the VR system itself. One of the participants above believed that eligibility for VR services is dependent on the client’s financial status and it is possible that people who could profit from VR services believe that it is means-tested and they would not be eligible. It may be that many people who could profit from VR services are not aware of the system, or see it as public assistance or welfare. And as noted above, it appears that most people with SCI, MS, LEP, and MD did not receive comprehensive services from VR and perhaps potential clients of VR know this and are discouraged from applying for services. There are significant limitations to the 911 database. There are probably significant differences in how data are coded and entered by DVR counselors and staff in different states and, potentially, different offices within the same state [46]. Secondary conditions are not typically entered and, when entered, are determined by the counselor and not as part of a formal diagnostic evaluation. It is also not known how accurately the range
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of services provided is recorded. Similarly, qualitative research is primarily used for generating hypotheses or exemplifying conclusions, and not as a basis for drawing conclusions. With these limitations in mind, we recommend that the VR system consider outreach to these disability groups. We also recommend that counselors can more effectively serve clients if they are provided with high levels of consultative supervision from people familiar with these disabilities, e.g., rehabilitation medicine clinicians or physiatrists who work with individuals with MS, SCI, LEP or MD on an ongoing basis. This might lead them to consider more comprehensive VR services that are customized to the needs of individualized clients. Counselors may also find they are more effective if they can let the clients frame the issues initially rather than moving directly to vocational objectives. Consumer organizations, such as the National Multiple Sclerosis Association, may be well positioned to assist with outreach about VR, information about eligibility and the referral process, and tips to potential clients about how to successfully interact with the VR system. Additional research in more depth is called for to better understand the systemic (e.g., agency funding, counselor case load size and autonomy to provide individualized services) and individual (e.g., secondary conditions, workplace environment, community support) variables associated with use of VR services and generating positive employment outcomes. It is true that there are finite resources available for VR agencies and when the need exceeds the demand, agencies are required by federal law to go into, “order of selection,” where people with the most significant disabilities are served first and others are assigned to a wait list. However, it is likely that when one considers the range of functional limitations associated with MS, SCI, LEP, and MD, many clients with these disabilities would be found eligible for VR services even under order of selection. In conclusion, we believe that it is clear that people who could benefit from VR services are not being served, and those who are served, are not getting comprehensive services or high quality outcomes.
Acknowledgments The authors thank Geri Bell, Ph.C., for her assistance in conducting the interviews.
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Conflicts of interest The authors have no conflicts of interest. The contents of this paper were developed under grants from the Department of Education, NIDRR grant numbers H133B080024 (U.W. Rehabilitation Research and Training Center on Aging with a Physical Disability) and H133B080025 (U.W. Rehabilitation Research and Training Center on Multiple Sclerosis). However, those contents do not necessarily represent the policy of the Department of Education, and Federal Government endorsement should not be assumed.
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Work 48 (2014) 441–451 DOI 10.3233/WOR-131781 IOS Press
Aging with a disability and state vocational rehabilitation services Pat Brown∗ and Kurt Johnson Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA
Received 7 September 2012 Accepted 3 February 2013
Abstract. BACKGROUND: Disability prevalence in older adults is increasing. Given the low rates of employment among people with disabilities, especially those aging with multiple sclerosis (MS), spinal cord injury (SCI), late effects of polio (LEP), and muscular dystrophy (MD), services from federal-state vocational rehabilitation (VR) programs could positively impact employment status. OBJECTIVE: To describe VR services for individuals aging with MS, SCI, LEP and MD and the impact of aging on employment status. PARTICIPANTS: Thirteen Washington State VR counselors and 26 individuals, 45 to 65 years old, with MS, MD, LEP or SCI. METHODS: We examined national Rehabilitation Services Administration data (2006, 2007), including case closure, service outcomes and other demographics. We then purposively selected Washington State for our study. Interviews provided consumer and counselor perspectives on the components of successful case closure (employed) and the impact of aging and disability on employment. RESULTS: Washington State and national data were similar. Organizational and individual factors influence the effectiveness of VR services. CONCLUSION: People who could benefit from VR services are not being served; those who are served, are getting neither comprehensive services nor high quality outcomes. Additional research is needed to understand the variables associated with effective use of VR services. Keywords: Employment, spinal cord injury, multiple sclerosis, muscular dystrophy, late effects of polio
1. Background Currently, 37.3 million (12.4%) of the US population is over 65 years of age. By 2030, it is expected that this rate will rise to 20.4%, making this group the fastest growing age demographic [1]. Consistent with the general “graying” of the US population, the prevalence of disabilities in older adults is increasing in part because of increased prevalence of disabling conditions in later adulthood. In addition, individuals with ∗ Corresponding author: Pat Brown, Department of Rehabilitation Medicine, University of Washington, Box 357920, Seattle, WA 98195, USA. Tel.: +1 206 543 6387; Fax: +1 206 543 4779; E-mail: [email protected].
disabilities are living into later adulthood because of advances in medical knowledge and practice. In 1940 the average life expectancy after a spinal cord injury (SCI) was just 18 months. In 2005, the same individual with SCI is expected to live approximately 85% of a “normal” life span (∼68 years) [2]. By way of comparison, in the past 50 years the survival rate for individuals with SCI has increased 2,000%, as opposed to only 30% for people in general [3]. Although individuals with disabilities are living longer, they are confronting higher levels of secondary conditions and barriers to participation than people in general. For example, cardiovascular data from individuals with SCI indicate that they may “age faster” than those without SCI [4,5]. Moreover, older individuals with disabilities report higher rates of unem-
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ployment than older individuals who do not have a disability [6]. These findings suggest the possibility that disability duration (e.g., time since SCI or time since emergence of significant Multiple Sclerosis (MS) symptoms) may be at least as important as chronological age when examining the effects of aging on functioning and secondary conditions [7]. Although studies indicate important associations between age and the frequency of unemployment [6] and some secondary conditions [8–11], the majority of these studies employ cross-sectional research designs that compare functioning or the frequency of conditions across different age cohorts. The secondary conditions that individuals with disabilities develop as they age may contribute to changes in physical and psychosocial functioning over and above any effects of the disability itself. The most common secondary symptoms reported by individuals with SCI, MS, muscular dystrophy (MD), and late effects of polio (LEP) (also known as post-polio syndrome), include pain [12–19], fatigue [14,15,18, 21], weakness [14,20], pressure ulcers (associated with wheelchair use or marked deactivation) [22–24], urinary tract infections (associated with the use of external catheters) [16,22,23], and bladder/bowel dysfunction and in MS, cognitive dysfunction [16,17,21]. Despite preliminary findings highlighting an increased risk for secondary conditions as individuals with disabilities age, little empirical work is available to evaluate the impact of these secondary conditions on aging with disability. To date, the only studies that examine the moderating effect of age on the impact of secondary conditions have focused on pain. One of these studies used data from 6,132 individuals with SCI who were enrolled in a National Spinal Cord Injury Statistical Center Database [25]. Results of this study indicated that older age was associated with an increase in pain interference in day-to-day activities, with the highest level of interference among those who were 75–79 years of age (p < 0.01). However, the measure of pain interference used in this study was a single item taken from the 12-Item Short Form Health Survey (SF-12), and the psychometric properties of this single-item measure have not been established. Interestingly, in this study, the trend for increased pain interference with age appeared to decrease dramatically among those participants over 80 years of age, perhaps related to attrition effects (i.e., individuals who live to be 80 years and beyond may be healthier than individuals who were previously alive but died before they were 80 years old). In a cross-sectional study con-
ducted by one of our investigators, older adults (i.e., those > 60 years of age) living with either SCI or a neuromuscular disease reported slightly higher average pain in the past week as compared to their younger peers (i.e., those < 35 years of age; p < 0.05) [26]. Physical disabilities such as MS, SCI, LEP and MD often affect individuals at a young age. Particularly with LEP, individuals have often compensated for the functional limitations associated with the initial experience with polio only to find those strategies less adequate as their function changes in middle age. None of these disabilities necessarily significantly reduce the lifespans of individuals. Issues around employment, therefore, can be paramount as people age with increasing functional limitations. Little is known about the impact of aging on employment for individuals with MS, SCI, MD or LEP. Approximately 90% of individuals diagnosed with MS are employed prior to their MS diagnosis [27]. However, as few as 20% to 30% remain in the workplace five years post-diagnosis [28], despite the fact that many (40%) who are unemployed report a desire to return to work [27,28]. There have been few studies about vocational rehabilitation and individuals with MS. In a study in the United Kingdom , Sweetland, Riazi, Cano, and Playford concluded that individuals with MS need assistance with managing the interaction between the impairments caused by MS, the physical environment, and the demands imposed by the work (p. 1183) [29]. Studies conducted in the United States (U.S) have found that interventions to preserve employment are more successful than those aimed at returning people to work after having left. Studies have also found that issues impacting employment are both related to the disease and to the work environment [30, 31]. A few recent studies have examined issues around aging with MS, concluding that individuals with MS leave work earlier than the national average due to disability [32]. There is no evidence with respect to the impact of aging and secondary conditions related to MS on employment or on the potential role of vocational rehabilitation interventions to prolong working years for people aging with MS. Individuals with SCI who are returning to work may require assistive technology, job placement and support services and counseling [33]. However, as with individuals with MS, little is known about the impact of secondary conditions on the continued employment experiences as they age. Krause found that it is extremely unlikely for individuals above the age of
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55 years with SCI to return to work unless they are returning to their pre-injury job. Those who do return to employment are not likely to remain until the traditional retirement age (1998, p. 623) [10,35]. Krause also found that employment rates after age 50 years continued to decline for those returning to work, although the reasons for this decline in employment rate and early retirement are not clearly determined beyond the relationship between personal factors, such as increased education and functional status, and decreased medical complications as predictive of employment [34–36]. As with individuals with MS, those with LEP experience early educational and professional options at the same level as their non-disabled siblings [37]. However, 80% of the more than 1,000,000 survivors of poliomyelitis living in the US experience symptoms consistent with LEP after age 40 years [38]. It is not uncommon that these symptoms, which include increased weakness, fatigue and pain, are severe enough to interfere with work and result in significant employment loss [6,37,39]. To date, there is no evidence in the literature with respect to the benefits of symptom management and vocational rehabilitation to extend participation in employment for those with LEP. Finally, we could find no recent literature on the impact of aging with muscular dystrophy, secondary conditions related to MD, and participation in the workforce. Fowler and colleagues found that employment decreased as individuals became older [40]. Of the 157 people with MD that they interviewed, 40% were employed at the time that the study was conducted and 50% had previously been employed. Gagnon and colleagues found that more than 45% of those surveyed with muscular dystrophy had experienced disruption in their work due to disability-related factors [41]. Given the low rates of employment among people with disabilities in general, and people living with MS, SCI, LEP, and MD as they age in particular, it seems as though these individuals could benefit from services from the federal-state vocational rehabilitation programs. In our study, we investigated the number of people served and outcomes nationally as reported by state vocational rehabilitation agencies to the Rehabilitation Services Agency for people with MS, SCI, LEP, and MD who had received vocational rehabilitation services. We also conducted a case study of people with MS, SCI, LEP, and MD who had received services from the Washington Division of Vocational Rehabilitation (DVR) and their DVR counselors to provide a consumer and counselor perspective on the essential
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components for successful closure-as-employed and the impact of aging and disability on employment status.
2. Study design and method We used a mixed methods design [42] to study the impact of existing systems on the employment of individuals with MS, SCI, LEP and MD. Our two-phase design [43] included a quantitative approach to describe the current patterns of employment outcomes for people participating in the vocational rehabilitation system, and a qualitative approach to discover and understand the process variables related to services and outcomes. These process variables included successful closure-as-employed rates by age and disability status, presence of reported secondary conditions and the provision of vocational rehabilitation (VR) services. 2.1. Phase 1: National data set We examined national data collected in 2006 and 2007 by the Rehabilitation Services Administration (RSA) in the US, including the RSA-911 Case Report Data and RSA monitoring reports. These data were the most recent data available at the time of this study. RSA administers the federal-state vocational rehabilitation program in the US and collect these data as part of their program monitoring and evaluation. These data provided us with information on intake, the number of individuals in plan, case closure, outcomes by disability and other demographics. 2.2. Phase 2: Case study We purposively selected Washington State for our case study in order to identify the essential systemic components for successful employment outcomes. We defined successful or positive employment outcomes as (1) successful VR closures, (i.e., individuals reach stability on the job as defined by DVR), and (2) individuals are employed in positions with benefits and wages commensurate to the US Department of Labor’s State Occupational Employment and Wage Estimates. 2.2.1. Protection of human subjects The lead author applied for approval to conduct this study to the University of Washington Human Subjects Division Internal Review Board (UW IRB). The recruitment, consent process and study procedures were approved by UW IRB Committee C.
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2.2.2. Qualitative interviews Following the analysis of the available RSA 911 data, we conducted interviews with key informants, either face-to-face or via telephone, to build a model of the VR process for individuals with MS, MD, SCI and LEP. Key informants included vocational rehabilitation counselors nominated as experts by the state agency director and DVR clients nominated by the participating VR counselors. The 13 participating VR counselors all have Masters degrees and all but one work in urban areas. Counselor experience ranged from two to 22 years with a mean of 11 years. Caseload sizes ranged from 20 to 146 with an average caseload size of 87. Interviews with VR counselors probed for information about both successful and unsuccessful closures in order to identify components essential to successful closures across disability, age, and other pertinent demographic data. Following our interviews with VR counselors, we conducted in-depth interviews with clients of Washington DVR with MS, SCI, LEP, and MD. Participating VR counselors recruited 26 individuals from their caseloads (both open and closed cases) who were between the ages of 45 and 65 years with MS, MD, LEP or SCI as a primary disability cause. In interviews with these DVR clients, we probed for information about the intake process, assessment and plan development, perceived counselor and employment vendor expertise in MS, SCI, LEP, and MD and community factors that affect employment status.
3. Data collection and analysis The two-fold purpose of this study guided the data analysis. For the review of the RSA-911 Case Report Data, we used descriptive reports. Variables included social security benefit status, types of services, type of outcome, wages at closure, etc. Our qualitative analysis consisted of organizing our interview data into categories using a commercial software program (QSR International’s NVivo qualitative data analysis software, version 8). Categories were used to interpret the interview information into overall themes that allowed for comparing and contrasting of information shared by the key informants in the project. To ensure internal validity, we triangulated the data and used key informants to check interpretations throughout the data analysis process and solicited colleagues from among research faculty with qualitative research experience to code sample documents and
interviews to ensure agreement in the development, choice and application of codes. Our primary strategy to ensure external validity is the development of a rich, detailed descriptive case study to provide others with a solid framework for comparison and the development of a model of current VR strategies used by counselors working with individuals who are aging with MS, SCI, LEP and MD, with links to the data. The lead author and a doctoral student with qualitative research experience conducted the interviews. Interviews were typically one to one–and-one half hours long. Interview coding was completed by both the lead author and the doctoral student with inter-rater reliability checks periodically conducted throughout the coding process. For VR counselors, data about caseload, organizational structure, and familiarity with individuals in our populations of interest were collected. We also asked for “stories” to illustrate important issues related to both the provision of services, types of services and outcomes reported for individuals on their caseloads. For clients, we collected data about current employment status, satisfaction with status and wages. We also asked about vocational goals and reasons for seeking services from VR. Half of the participants (both counselors and clients) were interviewed a second time after the preliminary data analysis to validate the themes that were developed. The qualitative interviews were semi-structured using the research questions as guides for prompts. The interviews were conducted either by telephone or in person. All interviews were digitally recorded and the files stored on a secure server. Audio files were transcribed for analysis and spot checked for accuracy.
4. Results 4.1. Demographics During 2006, 2,982 individuals between the ages of 45 and 65 years applied for VR services, listing MS, SCI, LEP (listed as polio in the RSA 911 database) and MD as the primary cause of disability. In 2007, this number increased to 3,757. The primary disability that results in a substantial impediment to employment across all four conditions was reported as either mobility or neurological or both. Secondary conditions are typically assigned by the VR counselor based on interview with the client or counselor observation. No clinical records are required for the assignment of a secondary condition. Over half (67% in 2006; 60%
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Table 1 Race and ethnicity by year: Washington state 2006 2007
White 45 67
Black 4 5
Native American 3 3
Table 2 Gender and primary disability cause by year: Washington state 2006 Male Female 2007 Male Female
MS 11 13 14 17
MD 1 4 2 3
LEP 5 1 8 4
SCI 12 3 15 15
Note: MS (Multiple Sclerosis), MD (Muscular Dystrophy), LEP (late effects of polio), SCI (spinal cord injury).
in 2007) of the individuals in our population of interest listed secondary conditions, primarily psychosocial (interpersonal and behavioral impairments, difficulty coping), cognitive (impairments involving learning, thinking, processing information and concentration) and other physical. The latter category does not include fatigue, weakness and/or pain; these are listed under “general physical debilitation.” Applicants were primarily white males. Approximately one third (38% in 2006, 33% in 2007) obtained a high school diploma or GED, one fifth (20% in 2006 and 2007) reported some post-secondary education, and 35% (2006) to 38% (2007) receiving a certificate or degree. Washington State demographics reflected the national data. As reported in the national RSA 911 database, individuals with MS, MD, LEP and SCI who applied for VR services were primarily white and evenly divided by male and female (Tables 1 and 2). The 2007 participants in Washington State reported higher levels of educational achievement with 47% reporting a degree or certificate compared to the national data (Table 3). 4.2. Outcomes There are seven options for reporting case closure in the RSA 911 database: closed before determined eligible, applicant in trial work experience, employment outcome, services initiated (not employed), determined eligible (pre-services), order of selection, determined eligible (no Individualized Plan for Employment or IPE written). Our two outcomes of interest are employment and services initiated (not employed). In 2006, of the 2,982 individuals in our populations of interest who applied for services, 36% were closed with employment as the outcome and 29% closed with-
Asian 1 5
Pacific Islander 0 0
Hispanic 2 2
out an employment outcome, but were not otherwise disqualified from receiving services. Justification for services initiated (not employed) includes failure to cooperate, disability too severe, transportation not feasible, unable to contact, refused services, death, institutionalization, transferred to another agency, extended services not available and other. The figures for 2007 are similar, with 38% closed with employment as an outcome and 27% closed without an employment outcome. In Washington State, case closures were similar to the national data in 2006; 36% (N = 18) closed with employment as the outcome and 40% (N = 20) received services but were not employed at case closure. The balance were either deemed eligible but did not enter into a plan (N = 7) or were in order of selection (4 = 5). In 2007, the rate dropped below the national average. Fifty-nine applicants received services. Of these, 20% (N = 12) were employed at case closure and 80% (N = 47) were not employed at case closure. Of the12 who were employed, 11 increased their weekly earnings by case closure and all increased the number of hours worked by case closure from hours worked at time of application. At time of case closure, participants reported their primary source of income (personal, family/friends, public support and all other sources). Public support includes Temporary Assistance for Needy Families (TANF), General Assistance, Social Security Disability Income (SSDI), Supplemental Security Income, Veteran’s Administration pension, and Workers Compensation pension. Nationally, across all four disability categories, personal income became the primary source of income for those who were employed at case closure (73% in 2006; 68% in 2007) with 22% (2006 and 2007) listing public support as the primary source of income. In Washington State, personal income was reported as the primary source of income for those employed at case closure (67% in 2006; 62% in 2007) with 22% in 2006 and 31% in 2007 listing public support at case closure. For those who were not employed at case closure, public support was reported as the primary source of income support (54% in 2006; 59% in 2007) with family/friends ranking second (28%, 23%) and personal income a primary source of support for only nine percent of individuals. In Washing-
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P. Brown and K. Johnson / Aging with a disability and state vocational rehabilitation services Table 3 Level of education attained at application by year: US and Washington state US Secondary Educ., no HS diploma High School diploma or GED Post-Secondary Educ., no degree Assoc. Degree or Voc. Certificate Bachelor’s Degree Master’s Degree or higher Total
2006 580 (14%) 1593 (38%) 826 (20%) 497 (12%) 511 (12%) 222 (5%) 4229
Washington 2007 438 (9%) 1684 (33%) 1037 (20%) 789 (15%) 817 (16%) 365 (7%) 5130
2006 7 (14%) 16 (32%) 11 (22%) 7 (14%) 7 (14%) 2 (4%) 50
2007 6 (8%) 22 (28%) 13 (17%) 16 (21%) 14 (18%) 7 (9%) 78
Note: HS (High School), GED (Graduate Equivalency Degree), Voc. Certificate (Vocational Certificate).
ton State, those unemployed at case closure reported public support as the primary source of income (60% in 2006; 65% in 2007) with family/friends ranking second (25%, 24%). 4.3. Services One-fourth to one-half of all VR participants, nationally and in Washington State, received assessment services and VR counseling and guidance. Transportation services and rehabilitation technology were also widely provided nationally and in Washington State. Reductions in Washington State services in 2007 (Table 4) may have resulted from funding limitations while in order of selection. Few VR clients who are aging with MS, MD, SCI or MD receive job assistance or placement services (15–19% nationally: 0 to three percent in Washington State). Nationally, six of the 21 available services are provided to two percent or less of eligible VR clients in our population of interest. In Washington State, 57% (N = 12) of the available services are provided to two percent or less of the eligible clients. 4.4. Qualitative analysis Our qualitative inquiry illustrates (1) the types of services requested by VR clients and (2) factors that may affect the delivery of these services. Four major themes emerged from our analysis, which were categorized into organizational or community factors. Organizational factors include the autonomy of VR counselors to provide services and the extent to which services are (or can be) coordinated among agencies to meet the individual needs of VR clients. Community factors include discrimination in the workplace and access to health insurance. In the following summary, we use pseudonyms for all of our research participants. Services requested by clients: Frank, a DVR counselor, reported that clients often do not want to talk
about vocational goals or services, at least initially; “they talk about stuff that they want” (F210). Clients reported requesting educational services (money for tuition and fees), transportation, and assistive (rehabilitation) technology. Educational services: There were 145 references to education in our interviews, mostly from VR clients. Despite high levels of education prior to seeking VR services, clients were looking for opportunities to either change careers (due to increased secondary conditions related to their disabilities), to make a change within their current career that would result in greater flexibility, such as working from home at least parttime, or attend school in lieu of job search due to difficulty in finding suitable employment. Stuart, a DVR client, decided that, “you know, well, I might as well, I should take advantage, if there’s no jobs out there right now, that this would be the best opportunity, best use of my time is to get back to school and come out of this when they start hiring again, you know, with a skill that I can bring to the table” (S422). Transportation: We had 417 references to transportation, with van purchases and/or modifications the most frequently cited. Counselors reported huge barriers to providing accessible vans due to the cost. The paperwork involved in making the request and the approval and contracting process takes well over two months, on average. Clients clearly reported being unable to pay the $60,000 cost for an accessible van; Sandy, even reported daydreaming about a van, “So there’s just a front seat and a passenger seat. So I can see myself, yeah, I’m already daydreaming and daydreaming about a van” (S48). Rehabilitation Technology: We had 876 references to rehabilitation technology in our interviews. Most referred to requests for wheelchairs or scooters, followed by requests for computers, computer software and smartphones. Home modifications (ramps, bathroom remodels and home offices) were also frequently requested. Counselors reported that rehabilitation tech-
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Table 4 Publically funded vocational rehabilitation (VR) services by year: US and Washington State US Assessment Diagnosis and treatment VR counseling and guidance College or University training Occupational training On the job training Basic remedial training Job readiness training Augmentative skills training Miscellaneous training Job search assistance Job placement assistance On the job supports Transportation services Maintenance Rehabilitation technology Reader Interpreter Personal Attendant Technical assistance Information and referral
2006 (N = 2982) 1867 (63%) 922 (31%) 1582 (53%) 475 (16%) 270 (9%) 33 (1%) 39 (1%) 164 (5%) 73 (2%) 300 (10%) 451 (15%) 540 (18%) 208 (7%) 750 (25%) 345 (12%) 602 (20%) 0 8 (< 1%) 62 (2%) 129 (4%) 412 (14%)
2007 (N = 3757) 280 (61%) 1201 (32%) 1964 (52%) 280 (7%) 276 (7%) 47 (1%) 16 (< 1%) 183 (5%) 72 (2%) 282 (7%) 582 (15%) 716 (19%) 248 (7%) 738 (20%) 390 (10%) 753 (20%) 3 (< 1%) 4 (< 1%) 37 (1%) 180 (5%) 571 (15%)
nology was often more related to quality of life than a specific vocational goal. “He was like I don’t want to go to work, but I want you to pay for my driving training, and I want you to help me buy an accessible van, and I want you – and I said well, we can’t help you with that stuff because your objective is not to go back to work” (T210). 4.5. Service delivery Informants identified several factors that influence both employment outcomes and service delivery. The organizational factors are closely related. VR counselors report that lack of autonomy affects how they deliver services, including their ability to coordinate services not provided by VR, such as housing, income support/supplementation and employment. Counselor Ed describes, “I’ve had a lot of people that are literally on the streets homeless and if they can’t get that under control, you know if they could have rent for one or two months or somehow get stable, I think that would...sometimes they have so much independent living issues where they can’t benefit from any other service and sometimes things like rent can make all the difference . . . ” (E210). Terrie expressed frustration in her limitations as a VR counselor to provide the services that she felt were essential in order for her clients to be successfully employed. “I think it gets in the way more than anything. I mean, it’s really hard not to be a social worker, because
Washington State 2006 (N = 50) 2007 (N = 78) 28 (56%) 23 (29%) 7 (14%) 3 (3%) 30 (60%) 23 (29%) 19 (38%) 10 (13%) 7 (14%) 0 0 0 0 0 0 0 0 0 0 0 0 0 1 (2%) 2 (3%) 1 (2%) 0 20 (40%) 7 (9%) 9 (18%) 6 (8%) 18 (36%) 8 (10%) 0 0 1 (2%) 0 0 0 0 0 5 (10%) 7 (9%)
when people come to us, especially in this economy, there’s a lot of – they’re not just dealing with the lack of a job, a lot of times. They’re dealing with a lack of housing, lack of resources as far as, you know, access to food and you know, just all that kind of stuff. And it’s really hard for me just to stay focused on work, work, work” (T210). VR counselors also expressed frustration with their lack of professional autonomy. Gary described this within the context of getting van modifications approved. Gary lives in a rural area where public transportation is limited, making having an accessible van to get to work essential. He states, “I would streamline that whole van modification step process a little bit more, thing, you know I like the fact that there’s an assistive technology there on board, the air . . . like the supervisors role and the process but I think that once we get, once we gather all the information and we’ve written all the documentations supporting the need for van modification you know probably does make sense to have the area manager approve it because it’s such a big amount but going back to (the state office) and get another approval on top of that seems so redundant . . . ” Counselor Jackie requests simply, “more control over having more flexibility on money to spend.” Clients come to VR with jobs that (1) they are either afraid they will lose because they cannot perform the essential functions or (2) they know they will lose so want to move to something else that is less taxing. Discrimination is discussed at length in 21 distinct in-
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stances in our study. Discrimination is especially problematic for clients with MS. Clients report that MS is grossly misunderstood (e.g. why do you need a scooter one day and not the next?), accommodations are very hard to get unless you need them all the time and flexible jobs (allowing folks to work from home on occasion) are very hard to come by. VR counselor Ed stated that many of his clients experience discrimination, “whether it is consciously or subconsciously . . . because the disability that can be observed and sometimes it’s hard to find open minded networks and open minded people in the community.” Jane, another counselor, said “October is Disability Awareness Month. I never saw that mentioned. I think there needs to be so much more political activity in terms of awareness with on the media level, because it’s sort of like if you’re not present, you’re not in the media. You’re not in TV shows. You’re not in movies. You’re not making a fuss about things. You’re not out there. You’re not getting anything. You’re not getting anywhere. You have to make yourself real visible in this country otherwise you’re invisible. And then if you’re invisible then you’re not worth anything and nobody wants to hire you.” Client Jay spoke of his experiences in trying to get accommodations at work, “I’m not able to travel because I need to take somebody with me, and (my employer) isn’t going to do that for me. That’s not a – they don’t consider that a reasonable accommodation, and that’s held me back in my career, and I’m positive that . . . they have solid rules to prevent discrimination, but you know you’re being discriminated against because you’re in a chair. There’s just nothing you can do about it” (J428). Finally, health insurance (or lack of) is a huge concern to clients and often a barrier to obtaining employment. Clients spoke at length about leaving jobs that they enjoyed or turning down jobs that met their need for flexible hours because the jobs did not include access to health insurance. Counselor June recalled a client who did “not have medical insurance through this job. And she can’t get it, because she doesn’t meet income requirements for, you know, medical programs, you know, for the state. So with her MS , it’s been kind of scary for her not to have medical insurance and she’s still at a point where she’s looking at other job opportunities that may be able to offer her that benefit” (J292). And Marty, a client with SCI, described an oft-cited conundrum, “Well, I think that people who qualify for DVR probably can’t afford to buy health insurance. For instance, [the university that I attended] charged me I
think it was $750 every semester, which is cheap by ordinary standards, you know, for health insurance. But if I hadn’t had money – a little bit of money in savings that I always reported and I just kept that money there and that money just got drained paying for my health insurance. Yeah, it would be nice if they would recognize that in today’s world, we must have health insurance, and we are not destitute enough, many of us, to qualify for Medicaid or Medicare, but we’re not earning – we’re not – we don’t have big incomes because otherwise we wouldn’t qualify for DVR.” (authors’ note: Although the subject believes eligibility for DVR services is dependent on income or earnings, in fact it is not although clients with financial means may be asked to pay for some client services under some circumstances. Our findings indicate that some clients did not adequately understand the eligibility criteria for services.)
5. Discussion From our analysis of the RSA 911 database, we found that very few people aging with MS, MD, SCI, and LEP (3,757 in 2007) have been served by the state federal system and those that have been served had poor outcomes. Also, most clients of the VR programs only received one or two services rather than a comprehensive approach and given the complex employment needs of many people with SCI, MS, LEP, and MD, it would seem reasonable to assume that they would have benefitted from comprehensive services. Although it is difficult to identify an appropriate “denominator” to provide a clear contrast between the numbers of people who potentially could use VR services and those served, if one considers MS, for example, there are currently over 400,000 people with MS in the US [44]. Approximately 30% of respondents in a large crosssectional survey of people with MS reported being employed and it is reasonable to presume that a significant proportion of those are at risk for losing their jobs due to increased burden of disease and secondary conditions. Of those who were unemployed, 40% strongly preferred to work [16]. By extrapolation then, just considering people living with MS, a very small proportion of people who could profit from vocational rehabilitation services are receiving them. Our findings support this. As noted above, both nationally and in Washington State, we found that comprehensive VR services are provided to only 2% of those eligible for services in our populations of interest. Our findings
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also suggest that, despite the need for job placement and support services reported in the literature [33], few receive these services. Through our qualitative study, we have identified potential barriers to VR services leading to positive employment outcomes for people with MS, SCI, MD, and LEP who are in the VR system. There appears to be a disconnect between the role the VR counselor believes he or she should play, or how much autonomy he or she has to be flexible in addressing client need, and the expectation of clients. For example, one of the counselors reported that clients with MS “want to talk about what they want” and not a vocational goal. It is likely that the VR counselor feels it is his or her job to move the client quickly toward a vocational goal and services to achieve that goal. From the client’s perspective, however, more generic counseling about fears, potential changes in physical status, discrimination, education and changing careers, may be preferred as a first step. Counselors and clients seemed to agree that potential discrimination is a significant barrier to employment. Based on reports in the literature on employment discrimination, especially for individuals with MS [45], this is an important issue that should be addressed as part of the counseling process. Many of the clients of VR with MS are working and concerned about losing their jobs [28]. From both the counselors’ and clients’ perspectives, many barriers to employment, such as housing and health insurance, are outside the scope of what VR can do. However, little is known about the barriers people encounter to participating in the VR system itself. One of the participants above believed that eligibility for VR services is dependent on the client’s financial status and it is possible that people who could profit from VR services believe that it is means-tested and they would not be eligible. It may be that many people who could profit from VR services are not aware of the system, or see it as public assistance or welfare. And as noted above, it appears that most people with SCI, MS, LEP, and MD did not receive comprehensive services from VR and perhaps potential clients of VR know this and are discouraged from applying for services. There are significant limitations to the 911 database. There are probably significant differences in how data are coded and entered by DVR counselors and staff in different states and, potentially, different offices within the same state [46]. Secondary conditions are not typically entered and, when entered, are determined by the counselor and not as part of a formal diagnostic evaluation. It is also not known how accurately the range
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of services provided is recorded. Similarly, qualitative research is primarily used for generating hypotheses or exemplifying conclusions, and not as a basis for drawing conclusions. With these limitations in mind, we recommend that the VR system consider outreach to these disability groups. We also recommend that counselors can more effectively serve clients if they are provided with high levels of consultative supervision from people familiar with these disabilities, e.g., rehabilitation medicine clinicians or physiatrists who work with individuals with MS, SCI, LEP or MD on an ongoing basis. This might lead them to consider more comprehensive VR services that are customized to the needs of individualized clients. Counselors may also find they are more effective if they can let the clients frame the issues initially rather than moving directly to vocational objectives. Consumer organizations, such as the National Multiple Sclerosis Association, may be well positioned to assist with outreach about VR, information about eligibility and the referral process, and tips to potential clients about how to successfully interact with the VR system. Additional research in more depth is called for to better understand the systemic (e.g., agency funding, counselor case load size and autonomy to provide individualized services) and individual (e.g., secondary conditions, workplace environment, community support) variables associated with use of VR services and generating positive employment outcomes. It is true that there are finite resources available for VR agencies and when the need exceeds the demand, agencies are required by federal law to go into, “order of selection,” where people with the most significant disabilities are served first and others are assigned to a wait list. However, it is likely that when one considers the range of functional limitations associated with MS, SCI, LEP, and MD, many clients with these disabilities would be found eligible for VR services even under order of selection. In conclusion, we believe that it is clear that people who could benefit from VR services are not being served, and those who are served, are not getting comprehensive services or high quality outcomes.
Acknowledgments The authors thank Geri Bell, Ph.C., for her assistance in conducting the interviews.
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Conflicts of interest The authors have no conflicts of interest. The contents of this paper were developed under grants from the Department of Education, NIDRR grant numbers H133B080024 (U.W. Rehabilitation Research and Training Center on Aging with a Physical Disability) and H133B080025 (U.W. Rehabilitation Research and Training Center on Multiple Sclerosis). However, those contents do not necessarily represent the policy of the Department of Education, and Federal Government endorsement should not be assumed.
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