Personal Assistance Services (PAS) for workers with disabilities: views and experiences of employers.
What are Personal Assistance Services (PAS) in the workplace? The Center for PAS at the University of California, San Francisco (under a grant from the National Institute on Disability and Rehabilitation Research) has defined Workplace PAS to include: task-related assistance at work, such as readers, interpreters, help with lifting or reaching, reassignment of non-essential duties to co-workers, and other help related to performing work tasks and may include personal care-related assistance such as helping someone with toileting, eating, or drinking while at work (Center for Personal Assistance Services, 2004). The Rehabilitation Research and Training Center at Virginia Commonwealth University defined PAS in the workplace as "services provided to an employee with a disability by a personal assistant to enable the employee to perform the essential duties of a job more efficiently" (Turner, Barcus, West, & Revell, 1998, p. 154). According to the Office of Disability Employment Policy (2008) within the U.S. Department of Labor, PAS in the workplace is provided as a reasonable accommodation to enable an employee to perform the functions of a job. PAS might be required for personal care-related activities (e.g., activities of daily living such as accessing the restroom and eating) as well as work-related tasks (e.g., reading, communication, and business-related travel). PAS could be provided both formally through paid personal assistants hired by a company, agency, or person with disability, and informally by a family member or a co-worker.The focus of this research was to understand difficult and complex issues surrounding work-related PAS. Changes in attitude and legislation during the past six decades have played a significant role in the lives of persons with disabilities. Historically, PAS have focused on Activities of Daily Living (ADL) (e.g., feeding, bathing) and Instrumental Activities of Daily Living (IADL) (e.g., laundry, meal preparation). The Independent Living model views PAS as a civil rights accommodation (DeJong, Batavia, & McKnew, 1992). People who managed personal assistants in their home environment came to realize that similar supports or assistance were required at the workplace if they wanted to find and maintain employment. Even with a tremendous array of assistive technology now available, some individuals with who want to work will still require skills and abilities of another person.
A convergence of demographic trends (i.e., rapid growth in the aging population, and shrinkage of the labor force) has changed the way business looks at disability in the workplace. According to the Office of Disability Employment Policy, U.S. Department of Labor, "Businesses can enhance their competitive edge by taking steps to ensure people with disabilities are integrated in their workforce and customer base" (Office of Disability Employment Policy, 2005). This perception also changed significantly the nature and scope of vocational rehabilitation programs and support services available to persons with disabilities. The 1973 Rehabilitation Act, as amended, (See. 2 (a) (28), includes Personal Assistance Services (PAS). Section 504 of the Rehabilitation Act, and the 1990 Americans with Disabilities Act (ADA) offered new ways to remove barriers to independence, employment, transportation, telecommunications, public accommodations, and the right to live in the least restrictive environment possible. The ADA requires employers with 15 or more employees to provide reasonable accommodation for employees who meet the Act's definition of disability. A reasonable accommodation is a modification or adjustment to a job that enables a qualified individual to have equal employment opportunity--an opportunity to attain the same level of performance or receive equal employment benefits and privileges as an applicant or employee without a disability (Equal Employment Opportunity Commission, 1992).
Is PAS considered a "reasonable accommodation" under the ADA? Reasonable accommodation can include PAS in the form of work-related assistance, generally referred to as job assistance, but reasonable accommodation is not required to include PAS in the forms of personal attendant care (e.g., feeding, toileting) at the worksite. Title I of the ADA states that services of a personal nature are not the responsibility of the employer. As per Equal Employment Opportunity Commission regulations (Title I of the Technical Assistance Manual), employers are not required to provide personal attendant care in the workplace, but employers are required to consider allowing employees to bring their own personal attendants into the workplace.
Since 1999, government programs have been developed to support PAS. These include: (a) Title XX Social Security block grants, (b) the 1999 Ticket to Work and Work Incentives Improvement Act (TWWIIA), and (c) Home and Community Based Services Medicaid Waiver Program (LeBlanc, Tonner, & Harrington, 2001). Under Section 203 of the TWWIIA, the Department of Health and Human Services designated Centers for Medicare and Medicaid Services to advance the purposes of the Act. These Centers use the definition of PAS provided under the TWWIIA and the Rehabilitation Act of 1973. The Centers for Medicare and Medicaid Services created the Medicaid Infrastructure Grant program which facilitates: (a) a Medicaid Buy-In program for people with disabilities who are working, and (b) a program for providing PAS to support individuals with disabilities to maintain their employment. Several states have adapted their Medicaid personal assistance programs to workers with disabilities (Hinton 2003; Silverstein, 2003). The services provided, however, differ across states due to disability and income-level restrictions/requirements.
Most people with disabilities want to work, but their employment rates have been low (Harris Interactive Inc., 2004). In 2005, the employment rate for people with disabilities 16-64 years old was 18%, while the employment rate for those without disability was 74% (U.S. Census Bureau, American Community Survey, 2005). Many individuals with severe disabilities will require PAS for personal care-related tasks as well as for work-related tasks. While the provision of PAS has been popular for people with disabilities in the home setting, the use of PAS in the work setting is relatively new (Job Accommodation Network, 2004).
Employers are concerned about the capabilities of potential employees with disabilities to fully accomplish the required work tasks. Gilbride and Stensrud (1993) found that few employers had favorable attitudes toward state vocational rehabilitation professionals. They did not consider them as credible sources of intervention and promoters of work activities among people with severe disabilities. Other studies have addressed the negative attitudes among employers toward persons with disabilities as workers. Some employers have established hiring procedures specifically to avoid risky hires (Kregel & Tomiyasu, 1994; Walters & Baker, 1996; Wright & Multon, 1995). In some cases, the high rate of unemployment among persons with disabilities was related to the physical features of the employment settings (e.g., inaccessibility), and the operational framework of national/state policies dealing with disabilities (Coble-Temple, Mona, & Bleecker, 2003). More importantly, however, there appears to be a "disconnect" between the rehabilitation professionals and the employers (Unger, Kregel, Wehman, & Brooke, 2002; Barcus & Targett, 2003). Fry (1997) proposed that rehabilitation professionals ought to obtain more complete and accurate data about employers' needs and attitudes and learn to develop and maintain working relationships with employers. Employers and rehabilitation service providers should explore novel ways to combine resources (public and private) to provide a broader range of PAS to people with disabilities who wish to seek and maintain employment.
The Job Accommodation Network (in partnership with the Center for PAS) examined the complexities involved with the provision and use of PAS at the workplace. This research has focused on understanding the critical problems surrounding PAS in the workplace. For example, investigation is required to address: (a) the definitional problems surrounding workplace PAS, (b) availability and fiscal responsibility of resources for the provision of workplace PAS, (c) recruitment and management of personal assistants for the workplace, and (d) barriers to the provision of workplace PAS. Appropriate PAS policies and procedures depend on evidence-based research findings which exemplify employer-employee coordination and collaboration.
Method
In this research, Focus Groups were used for obtaining qualitative data. The Focus Group technique involves a selected number of individuals in an organized discussion of their experiences, feelings, and preferences on a topic or activity in a group setting. Focus groups can be used at various stages of a study--at the exploratory stage, during a study, or after a study has been completed (Kreuger & Casey, 2000). Focus groups can be used as a method in their own right or as a complement to other methods, especially for triangulation and validity checking (Greenbaum, 2000; Bloor, 2001). Focus groups can be conducted either face-to-face or by telephone (conference call) (Silverman, 1994). Focus groups are effective because of speed, anonymity, and informality. Focus Groups in the present research were conducted using conference-call technology. Each focus group had a moderator/facilitator, an observer, and two recorders, who were the same individuals for each focus group.
Sample
For the Focus Groups, employers from the Job Accommodation Network database were contacted through electronic postcard notices, requesting their participation in the Focus Groups. Of the 128 employers who registered, 75 participated in 6 Focus Groups. Each Focus Group had 12 or 13 employers. The focus group design and information analysis were conducted using accepted procedures outlined by Kreuger and Casey (2000).
Procedure
Focus Group sessions included memory-based, note-based, transcript-based, and audiotape-based analyses. The moderator started the Focus Groups with an introduction to: (a) a legislative history of PAS, (b) the new Center for PAS in California, and (c) current PAS definitions. In each of the six Focus Groups, a round robin technique was used to guide the participants with specific probing questions on major issues of definition of PAS in the workplace, policies and procedures with respect to workplace PAS, success and barriers for PAS in the workplace, and information sources and resources about work and PAS. The moderator and the recorders maintained separate notes which were compared for accuracy and similarity. The notes taken by hand were checked against the audiotapes for accuracy. The two primary goals of Focus Group analysis were: (a) to reveal the important themes and their degree of emphasis which underlie participants' comments with regard to the Focus Group questions, and (b) to compare these themes across the six different groups. Comments gathered were sorted based on category titles and grouped into major themes (Kreuger & Casey, 2000).
Results
The results presented here represent the perspectives that emerged from the Focus Group sessions. The Focus Group participants were representative of typical Job Accommodation Network cases. The two largest industry groups represented were government and service industries, with 70% of them having more than 1,000 employees. The project staff was impressed by the dedication and high level of interest demonstrated by the participating employers in the provision of PAS at the workplace. The Focus Groups research led to identification of four major themes. Results from the Focus Groups are presented for each of the themes:
* Definition of personal assistance services (PAS) for people with severe disabilities who want to work;
* Fiscal responsibility for the provision of PAS at the workplace;
* Recruitment and management of personal assistants;
* Major barriers to the provision of PAS.
Theme 1: Definition of Personal Assistance Services (PAS) for People with Severe Disabilities Who Want to Work
A majority of the employers who participated in the Focus Groups were aware of the Americans with Disabilities Act (ADA) which required them to provide "reasonable accommodation" to facilitate and promote employment of persons with disabilities. However, due to the differing perceptions of definition of PAS and blurred distinction between PAS relating to personal care and PAS relating to work tasks, employers were not sure whether or not they provided PAS to their employees with disabilities. The unclear distinction between PAS for work tasks and PAS for personal care was highlighted when the employers discussed both legal and moral responsibilities associated with the situation when an employee needed assistance with transferring from a wheelchair to a work chair. One of the employers commented, "There are numerous definitions of PAS, and what I'm still finding is that some definitions do not distinguish between work-related tasks and personal care-related tasks. Some definitions include assistive technology as PAS. Some say that PAS specifically has to be provided by a person. I think that maybe a lot of us are providing PAS by some definition, and don't realize that." While most employers acknowledged that they had policies in place to guide the job accommodation process for employees with disabilities, only one had any specific policy or guidelines for provision of PAS in the workplace. Even in the absence of any specific policy or guidelines on workplace PAS, some employers had considered and provided PAS to some of their employees with disabilities. Examples they presented indicated that factors such as job tenure, job title, and level of performance of the "valued" employees were influential in their decision to accommodate the personal assistance needs (personal care-related as well as work-related) of those employees. Also, the size of the business and, therefore, the resources available to the business facilitated consideration and provision of workplace PAS, just as the size and resources facilitated job accommodations under the ADA.
Theme 2: Fiscal Responsibility for the Provision of PAS at the Workplace
Most focus group participants providing PAS were from large public organizations. Many of these organizations paid for and arranged for PAS. Even if some of the cost of providing PAS is reduced by government programs, coordinating and blending these funding sources for various types of PAS and accommodation posed workplace challenges for employers. Employers referred to at least three major funding sources for PAS. They were: (a) the Medicaid state plan personal care option program, (b) Medicaid home and community based waiver program, and (c) the Temporary Assistance for Needy Families (TANF) program of the U.S. Department of Health and Human Services. An employer summarized, "There are different sources of funding supporting different aspects of personal care. There are three challenges to funding PAS in the workplace: blending of funds, coordination between funders, and the shifting of tasks (amongst co-workers)." Fiscal responsibility for provision of PAS at the workplace was considered complex and difficult to resolve.
Theme 3: Recruitment and Management of Personal Assistants
Employers who participated in Focus Groups used a number of recruiting methods. These included contacting the local Center for Independent Living, advertising in newspapers, advertising in local college or university publications, contacting the local nursing school, networking with community organizations including churches, and working with the state vocational rehabilitation agency. Yet, finding personal assistants was difficult. This problem was compounded when a personal assistant was needed on a short-term basis, e.g., when a personal assistant calls off work or goes on vacation. In the public sector, background checks and other security measures created problems in hiring personal assistants. The personal assistants, like all other government employees, are required to have security clearances. These clearances are time consuming and sometimes expensive. A related issue (both in the provision of formal PAS provided by trained personal assistants and informal PAS provided by co-workers) is that of confidentiality. Many times, information in the workplace is confidential and only provided on a need-to-know basis. Without clear policy guidelines and training, organizations might become liable for the improper conveyance of confidential information. An important factor contributing to the difficulty of recruiting personal assistants was the low wages paid to them. One of the employers stated, "Attendants are very underpaid, and the turnover is phenomenal."
Theme 4: Major Barriers to the Provision of PAS
The Focus Group participants raised and discussed a number of barriers to the provision of work-related PAS. Barriers mentioned by the Focus Groups were: (a) scheduling, (b) job performance of the personal assistant, (c) workplace disruption, (d) lack of adequate work space for the employee with disability and the personal assistant, (e) job description or training plan for personal assistants, (f) lack of knowledge of traditional workplace etiquette, (g) lack of technical assistance and training for supervisors, (h) disciplining of either the employee using PAS or the personal assistant, and (i) safety issues. Some elaborations of these barriers follow. Scheduling may involve work hours for the employee with disability, a personal assistant, and/or co-workers for specific tasks. Employers reported that at times the personal assistants were not well suited to assist with job functions (e.g., read technical documents or interpret diagrams for an employee who is blind). Most employers did not have a clear job description or training plan for personal assistants. Since each job for each employee with a disability varies considerably, a clear job description would benefit the recruitment process (e.g., effective advertisement).
One of the employers emphasized, "An important issue is the disciplining of an employee and his/her personal assistant. We have a hard time with the training and giving assistants firm job duties where their role is not blurred, and do not get into problems." Employers asked for clear guidance from Federal agencies such as the Equal Employment Opportunity Commission. Most of the safety and liability problems reported by the employers stemmed from the informal provision of PAS by co-workers and the subsequent injuries to those co-workers in the process. Employers also felt vulnerable to liability if a paid assistant was injured in their workplace. One employer questioned, "I'm wondering about the liability the organization has for training a personal assistant. Do the personal assistants need to be certified? What level should the business go to in order to make sure it is protected in the event that something should happen?... We are certainly open to providing the level of care required. We just need to get our arms around it."
Information on PAS and Funding Sources
The focus group employers identified two primary sources for information and technical assistance on job accommodations and PAS: (1) the Job Accommodation Network (JAN) and (2) the Computer/Electronic Accommodation Program (CAP) of the U.S. Department of Defense. Employers also used: (3) State Vocational Rehabilitation Agencies, (4) Veterans' Affairs Administration, (5) Centers for Independent Living, (6) The United Way, (7) Local Affiliates of Association for Retarded Citizens, (8) Cerebral Palsy Foundation, (9) National Registry of Interpreters, (10) Society for the Blind, (1l) IRAP of the Department of Transportation, (12) Equal Employment Opportunity Commission (EEOC), (13) Corporate Leadership Council, (14) Society for Human Resource Management, (15) National Consortium for Health Services Delivery, and (16) National Navigator Positions Program of the Social Security Administration and the U.S. Department of Labor.
The focus group employers used various sources for recruitment and hiring of personal assistants. They were: Kelly Temporary Service, Manpower, Federal Occupational Health Administration, Nightingale Interpreters for the Deaf, local Nurse Education Programs, and local Colleges and Universities.
Discussion
Most working-age adults (16-64 years) with disabilities want to work, yet three out of four of them are not employed. Recent trends such as an aging population, increased focus on people with disabilities, and technological advancement have impacted the workplace. These trends: (a) point toward creation of "inclusive" workplaces for individuals with disabilities, and (b) seek balance between the traditional demand-side and supply-side challenges (Parsons & Conaty, 2005). Provision and appropriate use of PAS in the workplace could facilitate full integration of individuals with severe disabilities into the workforce and their communities. Even after decades of disability-related public policy and continued efforts of many enlightened employers to create inclusive workplaces for persons with disabilities, the employment rates for individuals with disabilities have been dismal.
In the Focus Groups of employers conducted in the present research, it was apparent that the size of the business establishment along with the availability of adequate resources influenced the positive approach and actions taken by the employers to provide the needed employment support services (PAS). Many of the employers who participated in the Focus Groups and Surveys were from the public sector and had more than 1,000 employees. These employers were: (a) more inclined to provide PAS as an accommodation under the 1992 Amendments to the Rehabilitation Act than the 1990 Americans with Disabilities Act, and (b) less likely to claim undue hardship for providing PAS. Costs of accommodating and providing PAS to employees (new entrants and those who become impaired) were a great concern for employers with small- and medium-sized business establishments.
Apart from the structural and fiscal considerations, a great deal of confusion seemed to exist about the nature of workplace PAS among the employers who participated in the Focus Groups and Surveys. Many were not clear on what constituted workplace PAS. They needed policy and guidelines on workplace PAS if they were to: (a) make informed distinctions between workplace PAS related to work tasks and PAS related to personal care, and (b) determine who would arrange, provide, and pay for PAS related to performing job functions and PAS related to personal care in the workplace. Effective collaboration and coordination will be needed, not only among the three stakeholders (employers, vocational rehabilitation service providers, and individuals with disabilities), but also with other Federal/state funding sources (e.g., Social Security Administration, Ticket-to-Work program under the TWWIIA, Home and Community Based Medicaid Waiver Program) to expand, nurture, and improve the employment of people with severe disabilities with the provision of PAS for work-related tasks and PAS for personal care-related activities at the jobsite. The employers underscored the importance for establishing: (a) a clear definition of PAS, and (b) policy and guidelines for employers on the provision of PAS in the workplace.
One of the most challenging tasks for the focus group participants (employers) was locating and recruiting qualified personal assistants. Employers from large business establishments who had arranged PAS for their employees with disabilities also acknowledged the potential challenges their employees faced in: (a) recruiting a qualified, reliable, and committed personal assistant, and (b) locating funding sources to offset the expense of the personal assistant. Most of the employers who participated in the focus groups suggested establishment of a referral service with a pool of well-trained and qualified personal assistants which both the employers and individuals with disabilities could use to recruit and employ personal assistants. Some of the employers who participated in the focus groups queried how and where their supervisors involved in the process of providing workplace PAS could obtain training and technical assistance. Development of a sample of "best practice" PAS policy and a tool to train employees within the organizations or businesses was suggested. Overall, the critical issues identified by employers were: (a) a clear definition of PAS, (b) recruiting/training of personal assistants, and (c) financing of PAS.
Limitations of the Study
Focus Groups provide group synergy. Although the strength of focus groups lies in the richness of information the participants provide, there are some limitations to the usefulness of the method. The open-ended nature of responses from the Focus Group participants leads to the development of qualitative themes. Such themes may make summarization and interpretation of results difficult. The small number of participants in Focus Groups tends to limit generalization to the larger population. They do, however, provide an in-depth understanding of a topic (i.e., Personal Assistance Services), based on their experience from the past and speculation about the future.
Conclusion
The results of the study presented here provide a broad perspective of employers on the provision and use of PAS. Additional research focusing more on employers in the private sector will be required to provide a more balanced representation of public and private sector employers. Not everyone with disability requires PAS at the workplace. Integrating people with severe disabilities into the workplace is a complex, challenging task, requiring minimization of barriers to the provision and use of workplace PAS.
Authors' Note
This research was conducted by the Job Accommodation Network at West Virginia University, in collaboration with the Center for PAS at the University of California, San Francisco, California. This research was funded by the National Institute on Disability and Rehabilitation Research Grant No. H133B031102.
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Sita Misra
West Virginia University
Louis E. Orslene
West Virginia University
Richard T. Walls
West Virginia University
Sita Misra, West Virginia University, Disability Policy Research Center, 231 Walnut Street, Morgantown, WV 26506 E-mail: smisra@mail.wvu.edu
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| Author: | Misra, Sita; Orslene, Louis E.; Walls, Richard T. |
|---|---|
| Publication: | The Journal of Rehabilitation |
| Geographic Code: | 1USA |
| Date: | Jan 1, 2010 |
| Words: | 4562 |
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