Personal Assistance Services (PAS) are defined as person-to-person services to assist people with disabilities with tasks they would perform if they did not have a disability. Traditionally, these services have focused on health care and activities of daily living. There has been minimal use of PAS in promoting employment and economic independence of people with disabilities. Research was conducted to determine the experiences and perceptions of rehabilitation service providers on the provision of PAS in the workplace. The study focused on (a) the definitional problems surrounding workplace PAS, (b) accessibility to PAS at the workplace, and (c) availability of resources (money and trained personal assistants). Views and experiences of rehabilitation service providers obtained through focus groups and a mail survey are presented. The rehabilitation service providers indicated that the success of providing PAS depended on establishing a strong, positive relationship with employers. Barriers to providing work-related PAS included lack of qualified assistants, transportation, and employers' lack of understanding of PAS.
Keywords: Personal Assistance Services, PAS, Employment, Disability
This research was conducted by the International Center for Disability Information and the Job Accommodation Network at West Virginia University, in collaboration with the Center for PAS at the University of California, San Francisco, and InfoUse of Berkeley, California. This research was funded by the National Institute on Disability and Rehabilitation Research Grant No. H133B031102.
The Center for PAS established in 2003 has defined PAS as:
Workplace personal assistance services 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 Center is jointly managed by the University of California at San Francisco and InfoUse of Berkeley, California under a grant from the National Institute on Disability and Rehabilitation Research (NIDRR).
The Office of Disability Employment Policy within the U.S. Department of Labor has defined PAS as: "services provided by people to assist individuals with disabilities with tasks that they would perform if they did not have a disability" (Office of Disability Employment Policy, 2004). 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 PAS program has a long developmental history going through several stages: an adaptation phase during the 1950s, a gap-filling phase during the 1970s, and a phase marking the consolidation and centralization of programs at the state level together with the introduction of increased consumer control during the 1990s (Litvak, 1998). Personal assistance services can be paid for through Federal/State funding, by an employer, by the person needing services, or through a combination of these sources. The primary funding sources for in-home Medicaid funding streams which support PAS are: (1) Medicaid Title XIX Personal Care Services optional state benefit, and (2) Medicaid 1915 (c) Home and Community Based Services Waiver Program. A number of other government programs also support personal care services, though limited in scope. They include: (1) Title XX Social Security block grants, (2) Title III Older Americans Act funds, (3) State general funds, and (4) Department of Veteran Affairs Aid and Attendance Program (LeBlanc, Tonner, & Harrington, 2001). Since 1975, under the Medicaid Title XIX Personal Care Services (PCS) optional state plan benefit, states have had the option of offering personal care, often referred to as personal assistance, as part of their Medicaid benefit package (i.e., as an optional state plan benefit), which includes assistance with activities of daily living and with instrumental activities of daily living. In 1981 with the passage of Section 2176 of the Omnibus Budget Reconciliation Act (OBRA), Medicaid HCBS Waiver Program was established. This Waiver Program created Section 1915c of the Social Security Act, which authorized states to exercise the option of providing home and community-based alternatives to institutional care.
Establishing a clear definition of PAS at the workplace has been a great challenge. Traditionally, PAS have been referred to by various names such as "attendant care," "home health services," or "companion services" with a focus on personal health care needs and activities of daily living (ADL) such as using the toilet, feeding, dressing, or bathing. PAS also were predicated on the provision of a range of instrumental activities of daily living (IADL) such as meal preparation, grocery shopping, laundry, and light house cleaning. PAS was broadly defined by Nosek (1991) as:
assistance from another person with activities of daily living to compensate for functional limitation. For persons with severe physical disabilities, it meant more specifically assistance with tasks aimed at maintaining well-being, personal appearance, comfort, safety, and interactions within the community as a whole.
In addition to these definitions focusing on compensation for functional limitation, the Independent Living model views PAS as a civil rights accommodation to ensure the civil rights of persons with disabilities (DeJong, Batavia, & McKnew, 1992).
With a rapid growth in the aging population and the gradual shrinking of the labor force, individuals with disabilities are increasingly being viewed as a major source of untapped talent. This has changed the nature and scope of vocational rehabilitation programs and employment support services available to persons with disabilities. The 1990 Americans with Disabilities Act (ADA) required employers to provide "reasonable accommodation" to assist employees (or new entrants to the workforce) achieve their employment goals. A reasonable accommodation is a modification or adjustment to a job or workplace that enables a qualified individual with a disability to enjoy equal employment benefits and privileges as an employee without a disability (Silverstein, 2003). According to the Equal Employment Opportunity Commission (EEOC), the accommodations were to include only job-related (e.g., assisting an employee with a mobility impairment on business trips) services and not personal care-related services (e.g., assistance in eating); however, employers were required to consider allowing employees with disabilities to bring their own personal attendants into the workplace (EEOC, 1992).
In 1999, Ticket to Work and Work Incentives Improvement Act (TWWIIA) was signed into law to help remove barriers to employment for individuals with disabilities and provide them with increased opportunities and supports to return to work. To advance the purposes of TWWIIA, the Department of Health and Human Services (DHHS), under Section 203 of the Act, designated Centers for Medicare and Medicaid Services (CMS). CMS defined PAS as:
a range of services, provided by one or more persons, designed to assist an individual with a disability to perform daily activities on and off the job that the individual would typically perform if the individual did not have a disability. Such services shall be designed to increase the individual's control in life and the individual's ability to perform activities on and off the job (Center for Medicare nd Medicaid Services, 2001).
These Centers created the Medicaid Infrastructure Grant (MIG) program to provide money to states to develop or enhance one or both of two core Medicaid components, (1) a Medicaid Buy-in program for people with disabilities who are working, and (2) a program for providing PAS to support individuals with disabilities to maintain their employment. Medicaid PAS have been limited to the home setting, but more than half of the states have developed more generous financial eligibility rules for working persons with disabilities through the Medicaid Buy-In Program (Hinton, 2003; Silverstein, 2003).
While there is an extensive history of the provisions of PAS for people with disabilities in the home setting, the use of PAS in the workplace is relatively new (Job Accommodation Network, 2004). A majority of individuals with disabilities want to work, but their employment rates have been low. According to the American Community Survey conducted by the U.S. Census Bureau, the employment rate for people with disabilities was 44.8% in 2002, 37.8% in 2003, and 37.5% in 2005, while the employment rate for people without disability during the same period was 77.6% in 2002, 77.5% in 2003, and 74.4% in 2005. Workplace PAS might enable people with severe disabilities to be fully integrated into the workforce. 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.
As the idea of workplace PAS gains importance, more research is required to address some of the complexities involved in the funding and provision of workplace PAS. For example, the definitional problems surrounding workplace PAS, accessibility to PAS at the workplace, and availability of resources (money and trained personal assistants) for the provision and use of PAS at the workplace must be dealt with. In partnership with the Center for PAS, the International Center for Disability Information (ICDI) at West Virginia University has been engaged in research activities on the use and provision of workplace PAS. The primary goal of this research was to explore and gather information (qualitative as well as quantitative) on how the service providers for individuals with disabilities perceived the various critical and complex aspects of PAS at the workplace and how they would handle those aspects. It was anticipated that this research would help gain a more comprehensive understanding of the critical problems surrounding the provision of PAS that would then lead to the development of appropriate and meaningful PAS policies and procedures.
Several methods may be used to gather information or perspectives on a given topic: face-to-face meetings, mail surveys, personal interviews, and focus groups After considering the strengths and weaknesses of these survey approaches, (1) a focus group method using conference call technology for gathering qualitative data combined with (2) a mail survey for collecting quantitative data was selected.
Focus Group research involves organized discussion with a selected group of individuals to gain information about their views and experiences on a topic. As a preliminary research technique, it is particularly suited for obtaining several perspectives on the same topic. Focus Groups can be conducted either face-to-face or by telephone (conference call) (Silverman, 1994). Focus Groups may be effective because of speed, anonymity, wide geographic representation, informality, and creative ideas. Participants can become a forum for change, both during and after the focus group meeting (Race, Hotch, & Parker, 1994). The project staff, therefore, chose to conduct Focus Groups using conference call technology.
Mail Survey research allows participants to carefully consider each question and take as much time as necessary in responding. Mail surveys are cost-effective, and are ideal for large sample sizes with a wide geographic dispersion. They do, however, take a relatively long time to administer and limit the ability of the researchers to probe respondents for additional or detailed information. With a view to complement and support the qualitative themes emerging from the focus groups, a mail survey yielding quantitative findings also was planned and conducted.
A total of 473 rehabilitation service providers who could be contacted online were identified from the Job Accommodation Network database. Electronic postcard notices were sent to solicit their participation in the focus groups. An online registration form accompanied by a questionnaire was developed in collaboration with InfoUse which administers the Center for PAS. The questionnaire sought some basic information from the service providers such as the type and size of their organizations, the types of disabilities of consumers they served, whether or not they provided PAS, and if so, how many of their clients received workplace PAS. Other more general questions focused on policy, procedures, employer attitudes or knowledge regarding PAS, and barriers to PAS.
Of the 52 rehabilitation service providers who completed the online registration form and the questionnaire, 27 participated in 6 focus groups. The focus group design and information analysis were conducted using accepted procedures outlined by Kreuger (1994). The focus groups began with a ten-minute introduction by the International Center for Disability Information moderator, which included a legislative history of PAS, an introduction to the new Center for PAS in California, and current PAS definitions. A round robin technique was used in each focus group meeting to guide the members with nine 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 company which provided the teleconference services made a tape recording of each session for later reference.
Mail survey respondents were rehabilitation service providers within the Employment Networks of the Ticket-to-Work Program, and the service providers within the State Rehabilitation Agencies. The participants included (a) 123 service providers from the Employment Networks and (b) 69 rehabilitation professionals from the State Rehabilitation Agencies who had provided personal assistance services. Upon the endorsement of the survey by the Council of State Administrators of Vocational Rehabilitation (CSAVR), seven states — Alabama, Illinois, Oregon (Blind Agency), Pennsylvania, South Carolina, Utah, and West Virginia — agreed to participate. Each of these state agencies established the number of rehabilitation professionals who would participate in the survey. The overall mail survey response rate was 15%.
The focus group analysis strategy included memory-based, note-based, transcript-based, and audiotape-based analyses. Separate notes were kept by the recorders and the moderator and were compared for accuracy and similarity. Audiotapes also were checked against recorded notes for accuracy. Debriefing occurred between the moderator and recorders. A rigorous analysis process to report the findings was undertaken. The sequence was: (1) Analysis of Notes, (2) Categorization of Comments, (3) Validation of Categories, (4) Themes & Clusters, and (5) Report on Focus Group Findings. An analysis of the information gathered resulted in categorization of comments according to actual content. Comments then were sorted based on category titles and grouped into major themes. In the mail survey, the following definition was provided:
In the workplace, people with disabilities use many forms of accommodation to assist them in the performance of essential functions of their jobs. In some instances, such accommodation includes assistance such as sign language interpreters for persons who are deaf. PAS in the workplace may also include personal care activities such as helping someone to access the restroom. PAS may be provided formally through individuals hired to perform specific tasks or informally by having a co-worker or even a family member of the employee provide these services.
The survey instrument was two-pronged. The survey began with the question: Do you provide or arrange PAS to your consumers (or clients) with disabilities placed in jobs? If the response was "no," then the participant was asked to: (1) provide some basic information (e.g., number of consumers served in a year, type of services provided, and sources of funding for services); (2) respond to an open-ended question on what policies, funding changes, or service procedures would enable them to provide PAS in the workplace for their consumers; and (3) mail the response back in the postage-paid envelope. If the response was "yes," then the participant was directed to a survey with questions on: (1) the number of consumers who received PAS in the workplace for (a) work-related assistance, (b) personal care-related assistance, or (c) both; (2) types of impairments of the consumers receiving PAS; (3) number of hours of PAS per week provided per consumer; (4) the entity responsible for hiring and training; (5) the entity paying for the personal assistance services; (6) written policies/procedures, if any, for providing PAS; (7) barriers to providing work-related or personal-care-related PAS; and (8) the respondent's experience with employers and their attitude (or knowledge) regarding provision of PAS in the workplace.
The results presented here represent the full range of perspectives that emerged from the focus group sessions and mail survey. The project staff was impressed by the dedication and high level of interest demonstrated by the participants (rehabilitation service providers) in the provision of PAS at the workplace. Being exploratory in nature, the research focused on the following six broad issues: What are personal assistance services? Who needs these services? Why are they necessary? Who should provide them? How should they be provided, funded, and managed? What policies and procedures govern the provision and use of PAS?
As these six issues were addressed and discussed in the focus groups and via the mail survey, the following general themes emerged:
- Definition of personal assistance services (PAS) for people with disabilities at the workplace;
- Fiscal responsibility for the provision of PAS at the workplace;
- Recruitment and management of personal assistants;
- Employer attitude and knowledge regarding PAS at the workplace;
- Major barriers to the provision of PAS;
- Factors contributing most to success of workplace PAS.
Results are presented in the following paragraphs for each of these six themes.
Theme 1: Definition of Personal Assistance Services for People with Disabilities at the Workplace
Most service providers who participated in the focus groups were aware of the Americans with Disabilities Act (ADA) which required employers (both public and private) to provide "reasonable accommodation" to enable employees with disabilities to achieve their employment goals. They arranged for accommodations and use of assistive devices, if needed, for the clients they served and placed in employment. However, from the focus group discussions, it was obvious that most of the service providers were not clear on the definition of PAS and what constituted PAS at the workplace. This is partially due to the differences in legislative requirements for Employment Networks (supported employment and residential support services) versus State Rehabilitation Agencies (vocational training and job placement). Some participants acknowledged that their organizations did pay for readers, interpreters, and job coaches on a short-term basis (only during the training), but they were not called "personal assistants." Service providers often referred their clients to a Center for Independent Living for the assessment of PAS use at home. Some of their rehabilitation clients used a lot of assistive devices, but counselors felt that many of these clients needed personal assistants at all times for personal care as well as work activities. The participants had difficulty in viewing PAS at the workplace as services provided by a "person" and not by an assistive device or an impersonal job accommodation. Without clear definitions or differentiations, it would be difficult to develop any coherent policy or guidelines for providing PAS at the workplace.
Theme 2: Fiscal Responsibility for the Provision of PAS at the Workplace
Fiscal issues appeared to be the most critical factor. The views expressed by the focus group participants and responses received through the mail survey were similar. The agencies did not pay for PAS but paid for assessment for PAS and assistive technology. State funds paid for job coach and accommodations only during the interview and trial work period. Colleges/Universities paid for readers and scribes for students and employees. A number of other payment sources also were identified. Medicaid Waiver, MR/DD Waiver, and Council for Mental Health were used by the Employment Network service providers. Medicaid Waiver, third-party funding source/insurance, and Social Security were used by the State Rehabilitation Agency service providers. The fact that various combined payment sources (e.g., agency & consumer, agency & other, consumer & other, and agency, consumer, & other) were sought in paying for PAS underscores the fact that finding a single dependable payment source for provision of PAS on a continuing basis was difficult, cumbersome, and required tremendous effort.
Theme 3: Recruitment and Management of Personal Assistants
This topic elicited several responses. Various entities seemed to be responsible for the recruitment of personal assistants to assist people with disabilities with both job-related and personal-care activities. Social groups and colleges were used to locate trained personal assistants. Families usually helped find, hire, and train personal assistants. Some service providers found personal assistants through local programs such as Emergency Medical Technicians Program. Colleges and universities assisted in locating students who could provide PAS as part of their college training and practicum. One service provider indicated, "It is hard to find personal assistants due to limited working hours because of low wages for personal assistants, and inconsistent work due to the ability of the individuals needing PAS to remain employed for long periods of time." Among the Employment Network service providers, the agency had the major responsibility for hiring and training personal assistants. But, among the State Rehabilitation Agency service providers this responsibility was shared by the agency and the consumer. This is because empowerment of the consumers and their commitment and involvement throughout the rehabilitation process is emphasized and practiced in the Federal-State Rehabilitation Program. There appeared, however, to be some confusion as to who really had the main responsibility for training personal assistants. The service providers wanted people with disabilities requiring PAS at the workplace to manage their own supports, and be actively involved in activities such as recruiting, hiring, and evaluating the personal assistants. The focus group participants felt that people with disabilities needing PAS ought to (1) conduct a self-assessment to determine PAS needs, (2) translate these needs into job functions, and (3) use this information in development of a job description for recruiting the personal assistant. Local Centers for Independent Living offer consumer orientation training on the acquisition and use of PAS. Some of the focus group and mail survey participants mentioned about the user-friendly training programs developed by the Central Iowa Center for Independent Living (CICIL) to assist persons with disabilities find and keep personal assistants. The training is interactive and designed for both consumers and service providers.
Theme 4: Employer Attitude and Knowledge about Provision & Use of PAS
The focus group and survey participants expressed both negatives and positives. On the negative side, a lack of knowledge, additional financial burden, and fear of liability contributed to employers' skepticism. In general, the service providers reported that employers had little understanding and knowledge of PAS. Employers felt that providing a personal assistant meant they were hiring two people (employee with disability and a personal assistant) to do one person's job. The service providers pointed out that even within businesses, attitudes of people working in various departments and at hierarchical levels varied and therefore made it difficult to place clients with disabilities who needed personal assistance. Some businesses viewed employees as liabilities once they became disabled no matter how much they had invested in those employees. Some employers were fearful of liability and risk involved in employing people with certain types of disabilities. For example, the question of providing and paying for transportation to an employee who was blind was considered risky and too expensive. Also, if employees were only marginal employees, employers were not willing to accommodate them. One service provider said: "Most employers have little or no knowledge regarding PAS. Some are negative about such services but most employers will accommodate PAS because they are afraid of lawsuits." Similarly, another service provider stated that "Many employers are skeptical and do not want to deal with the extra effort of hiring someone who requires a personal assistant."
On the positive side, the service providers indicated that employers generally had a positive attitude toward hiring people with disabilities. Employers were most receptive when: (1) they had a positive experience in bringing someone with a disability back to work; (2) they had a relative who had a disability; (3) they were able to retain and continue the employment of an experienced and valued employee with a disability; and (4) they received information on the value of providing workplace PAS. The service providers also opined that employers in the public sector were more likely to accommodate employees with disabilities as required by law (ADA) than employers in the private sector. The service providers emphasized the need for employees with disabilities to clearly distinguish between their role in the work activities and that of the personal assistant.
Theme 5: Major Barriers to the Provision of PAS
A major barrier to the provision of PAS as expressed by the focus groups and survey participants was inadequate fiscal resources. Service providers of the State Rehabilitation Agencies stated that the policies and procedures governing the Federal-State Rehabilitation Program restrict the use of services (including PAS) to clients only during the rehabilitation process and not on a continuing basis. The participants expressed the need for funding long-term needs of their clients. Locating personal assistants in rural areas was noted as a great challenge. A major barrier to provision of workplace PAS in the rural areas was also the lack of transportation. Information about PAS services was almost nonexistent in rural areas. Focus group participants also pointed out that lack of services and communication (no phones) on the Native American reservations was a huge problem. Education and training on the "nuts and bolts" of providing PAS, assistive technology devices, and how to use them at all levels of the organization were needed. In addition, lack of knowledge on the part of employers about workplace PAS, cited previously, was a barrier. Also, more coordinated education and training of employees at various levels of organizational hierarchy were noted as important. Self-advocacy by workers with disabilities can be instrumental in dispelling the misunderstandings and misperceptions of co-workers.
Theme 6: Factors Contributing Most to Success of Workplace PAS
The rehabilitation service providers believed that the success of providing PAS at the workplace depended on establishing a strong, positive relationship with employers, and jointly working with them on the support services needed by the individuals with disabilities on the job. Most of all, the service providers stressed that establishing enforceable policies and procedures for provision of workplace PAS was critical to promoting employment and economic self-sufficiency of people with disabilities. There was almost a general consensus among the focus groups and survey participants that although they had an accommodation policy according to the 1990 Americans with Disabilities Act, there was no policy on workplace PAS.
Resources on PAS for Personal Care and Work Activities
The focus group participants identified several sources that could help all who are associated with the use of workplace PAS. They were:
- The Job Accommodation Network, a service of the Office of Disability Employment Policy of the U.S. Department of Labor, embraces a mission to provide employers, individuals with disabilities, rehabilitation specialists, and others with practical information regarding the tools and techniques necessary to successfully work through the job accommodation process.
- Registry of Interpreters for the Deaf (RID), a national organization together with the National Association of the Deaf, is part of the National Council on Interpreting, and has developed a National Interpreter Certification test which can be downloaded and used from RID website;
- United Cerebral Palsy and local Cerebral Palsy agency offer services which include assistive technology, employment assistance and workplace engineering, and advocacy;
- Local Centers for Independent Living are affiliates of the National Council on Independent Living which was established four years after the 1978 Amendments to the Rehabilitation Act. The Centers advocate for the human and civil rights of persons with disabilities throughout the U.S.;
- Local One-Stop Career Centers established under the 1998 Workforce Investment Act offer a full range of assistance to job seekers such as training, referrals, career counseling, job listings, and similar employment-related services;
- Statewide AT Programs, using federal funds, deliver services to people with disabilities so that they can obtain the assistive technology devices they need for work, school, and home;
- Braille Institute offers free-of-charge services to assist people with limited or no vision lead independent and enriched lives;
- Equal Employment Opportunity Commission is responsible for enforcement of Section 501 of the 1973 Rehabilitation Act and Title I of the Americans with Disabilities Act (ADA) which prohibit employers from discriminating against qualified persons with disabilities;
- Assistive Technology Loan Fund whose mission is to facilitate favorable credit financing of assistive technology for persons with disabilities under a grant from the National Institute on Disability and Rehabilitation Research (NIDRR); and
- Disability and Business Technical Assistance Centers established by the NIDRR in ten regional centers act as "one-stop" central, comprehensive resource on ADA issues in employment, public services, public accommodations, and communications. Programs vary in each region.
Quantitative Results from the Survey
Some findings from the survey specifically relate to provision of PAS, type of disability, number of hours of PAS, and responsibilities for hiring/paying. Among the 192 service providers who responded to the solicitation for participation in the mail survey, 83 (43%) of them indicated that they did provide PAS to their clients. Of these 83 service providers who had provided PAS, 45 of them represented Employment Networks, and 38 were from State Rehabilitation Agencies. Of those 83 who had provided PAS, (a) 48% assisted 1,117 clients with work-related PAS, (b) 29% assisted 324 clients with personal-care-related PAS, and (c) 23% assisted 394 clients with both personal-care PAS and work-related PAS.
Among the service providers (Employment Networks and State Rehabilitation Agencies) who did provide PAS, (a) 51% of the consumers had sensory impairments, (b) 34% of them had physical impairments, and (c) 15% of them had mental impairments. For the number of hours of PAS provided per week, per consumer, (a) 20% received less than 5 hours, (b) 17% received between 5 and 15 hours, (c) 17% received more than 15 but less than 30 hours, (d) 14% received 30 hours or more, and (e) 32% received variable hours or used-as-needed hours. On the question of who had the major responsibility of hiring personal assistants, the responses reflected the emphasis on empowerment of the consumers and their commitment and involvement throughout the rehabilitation process as emphasized and practiced in the Federal-State Rehabilitation Program. As for the training of and payment to the personal assistants, there appeared to be some confusion as to who really had the main responsibility, and the responses underscored the difficulty in finding a payment source on a continuing basis for providing PAS.
The credibility of findings in qualitative research is based on the quality of data obtained and specific techniques designed to limit potential bias and enhance the usefulness and generalization of the results (Bogdan & Biklen, 1998; Strauss & Corbin, 1998). Transcript coding and analysis were performed using extensive audit trail and notes from the primary researchers. A thorough examination and coding of more than 800 transcript pages was carried out to ensure the quality of the data obtained. The relatively small sample size (27 in the focus groups and 192 in the mail survey), however, may limit the generalization of findings.
For some individuals with disabilities, the need and use of PAS to support their work activities is critical. A PAS program for personal care-related assistance at home and in the community (not at the workplace) was incorporated into the Medicaid program under Supplemental Security Income (SSI). PAS services for home and community are available in every state, but rules and regulations are not uniform and cause many problems. In 1992, the Amendments to the Rehabilitation Act led to the consideration of PAS as a work necessity. However, negotiating clear differentiations between PAS relating to personal needs and PAS necessary to perform essential job functions has been a real challenge for rehabilitation professionals and employers, as well as employees with disabilities.
Although the participants in this research study arranged for accommodations and use of assistive devices, most of them were not clear on the definition of PAS and what constituted PAS in job performance. Most PAS provided by these agencies for personal care activities or for work-related tasks tended to be on a short-term basis. Employer attitude toward provision of PAS was considered extremely important in the job placement of employees with disabilities. Most participants stressed that establishing enforceable policies and procedures was critical to promoting employment.
The perceived barriers to providing work-related PAS were (1) lack of information and understanding of PAS, (2) geographic location (rural and secluded areas such as Native American Reservations), (3) entry point of services (state, district, county), (4) access to transportation, and (5) lack of qualified personal assistants. These perceived barriers were more pronounced in (a) rural areas than in (b) urban areas. Lack of funding was a critical factor. One service provider summarized this critical factor well: "Not enough money in programs to provide needed services to all consumers. In most cases, hours of PAS provided have been cut back and even terminated due to lack of funding." The perceived barriers were similar for both (a) those who had provided work-related PAS and (b) those who had not. Some of the barriers could be mitigated depending on how well the rehabilitation professionals performed their role as ambassadors and sales persons.
Workers with disabilities need to dispel the misunderstandings and misconceptions of their co-workers and other employees within the organization. They ought to engage in self-advocacy. The present findings augment previous research efforts (e.g., Hernandez, Keys, & Balcazar, 2000; LeBlanc, et al., 2001; Litvak, 1998). Continuing research, including focus groups and surveys of all stakeholders, can help provide a broad base for initiating policy and guidelines for the provision of workplace PAS.
The service providers (focus group as well as survey participants) believed that the success of providing PAS depended on establishing a strong, positive relationship with employers and jointly working with them on the support services needed by people with disabilities in the workplace. Major recommendations made by the focus group and survey participants included:
- Establish enforceable policies and procedures for provision of PAS,
- Increase funding to pay for PAS (for personal care as well as for work-related activities),
- Promote better wages for personal assistants,
- Provide appropriate and adequate information about PAS to individuals with disabilities, service providers, and employers,
- Expand PAS to young people with disabilities as they transition from school to work and also to older employees as they begin to have age-related impairments.
Not all employees with disabilities require PAS at the workplace. For those Individuals with severe disabilities who will require support services at the workplace, PAS can make a real difference. The results of the study presented here provide a broad perspective of the rehabilitation service providers on the provision and use of PAS. But, rehabilitation service providers are only one of the three stakeholders (individuals with disabilities, rehabilitation service providers, and employers) associated with provision of PAS. In order to obtain a more comprehensive picture of PAS, additional research efforts focusing on all stakeholders will be necessary. If people with severe disabilities are to be independent and productive members of their communities, serious consideration must be given to provision of workplace PAS.
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