Consumer Management of Attendant Services: Benefits and Obstacles
by Gary R Ulicny and Michael L. Jones, University of Kansas
Attendant services refer to the assistance severely disabled people need to carry out their daily living activities (National Council on the Handicapped, 1986). This assistance is typically provided by a paid worker and may include tasks such as personal hygiene, dressing, mobility, shopping, and communication assistance. Assistance may be provided in a wide range of settings such as home, school, and work (Ratzka, 1986).
For many disabled persons attempting to live independently, attendant services are crucial. These services provide them with assistance that otherwise might be available only in a more restrictive environment (DeJong & Hughes, 1980; Laurie, 1979.) A recent survey estimates that 850,000 Americans currently use some form of community-based attendant services (Litvak, Zukas, & Heumann, 1987). Moreover, the survey concludes that, for each person receiving services, more than three persons still remain unserved. Finally, according to the National Interview Survey, 4.9 million adults require the assistance of another person to carry out everyday activities (Feller, 1983).
An important distinction should be made between consumer-directed and agency--directed attendant services. In a consumer--directed approach, people with disabilities are encouraged to take full responsibility for managing their own attendant services. The consumer recruits, hires, trains, supervises, and pays his or her own attendants. A service agency (e.g., independent living center) may provide various support services, such as attendant referral and orientation training for prospective attendants (Board, Cole, Frieden, & Sperry, 1980), but the consumer is still responsible. In agency-directed services, such as visiting nurses programs or home health agencies, attendants work under the direction of a supervising nurse, not under a consumer (DeJong, 1979).
Advocates of the consumer-directed model of attendant services cite at least eight dimensions on which the consumer-directed model varies from an agency-directed model (DeJong & Wenker, 1979; Litvak et al., 1987) and are summarized below.
The agency-directed model
The consumer-directed model
Proponents of the consumer-directed model offer several compelling reasons why this model is preferable to an agency-directed approach.
First, consumers benefit from the independence and autonomy resulting from managing their own assistance. Managing one's personal care is seen as "critical to one's sense of self-worth and independence," (DeJong, 1979), and it has even been called a civil right (National Council on the Handicapped, 1986).
Second, consumer-directed assistance is preferable for practical reasons. Most consumers are familiar with their own attendant service needs (Laurie, 1979; McGuinn, 1977; Roberts & Sydow, 1981) and the on-the-job training provided by consumers may be the most effective approach (DeGraff, 1979; Hutchins, Thornrock, Lundgren, & Parks, 1978). Many health care professionals contend, however, that consumers are not adequately prepared to ensure that some procedures (which may be life-sustaining) are performed consistently and thoroughly (DeJong & Wenker, 1979; Hutchins, Thornrock, Lundgren, & Parks, 1978).
Third, it may be more cost effective. Some data suggest it is less costly for people with disabilities to live in the community than in an institution. Further, it makes intuitive sense that it is more efficient to train one consumer how to manage attendant services than it is to train all of the several attendants she or he may use over a lifetime (Ulicny & Jones, 1985).
Despite the concern voiced by agency-directed services advocates, consumer-directed programs appear to be gaining widespread support. This was pointed out in a recent report to President Reagan by the National Council on the Handicapped. The Council recommends that Congress establish a national policy requiring attendant service programs to "provide for the optimum degree of self-direction and self-reliance as appropriate for individual consumers," (National Council on the Handicapped, 1986).
Given the importance and widespread need of attendant services, there are little data on the topic (Smith & Meyers, 1981; Ratzka, 1986). A recent landmark survey of in-home support services in all 50 states by the World Institute on Disability has provided an excellent first step in establishing comprehensive baseline data. However, almost no data exist on the relative benefits of a consumer-directed model and the management issues it presents to consumers.
The purpose of this literature review article is to examine the (limited) empirical research related to consumer management of attendant services and to make recommendations based on these findings. This article covers the three major issues surrounding the consumer-directed approach: 1) benefits to consumers of self-directed personal assistance, 2) consumer competency in managing attendant services, and 3) the cost of attendant services. The paper concludes with future research directions, discussing several obstacles to the consumer-directed model.
Benefits of a Consumer-Directed Model
While not directly related to providing attendant services to persons with severe disabilities, a body of research exists that may provide support for consumer control. In 1970, Ludwig and Collette examined the effects of dependency and social isolation on 486 persons with disabilities. Results showed that increased dependency and social isolation were associated with poor mental health. Also, literature in gerontology has demonstrated that perceived control over the environment can significantly improve the life satisfaction and morale of elderly persons (Campbell, Mancini, 1981; Ziegler & Reid, 1983). This control seems to be particularly important in the areas of daily living activities and self-care (Langer & Rodin, 1976; Morganti, Nehrke, & Hulicka, 1980).
Two studies have attempted to examine the individual benefits of a consumer-directed model. In the first study, 24 severely disabled individuals received government funds for two years for attendant services for two models, consumer-directed and agency-directed. Dependent variables included both objective indicators (i.e., changes in living arrangement, marital, and work status) and subjective indicators (i.e., consumer satisfaction, self-esteem, and self-report statements). Results revealed no significant within-group or between-group differences, except in the area of consumer satisfaction and individual self-reports (Clark & Faragher, 1986.) The consumer-directed and agency-directed groups did not differ significantly in satisfaction increases.
In late 1984, an attendant services project began in Pennsylvania (Pennsylvania Evaluation Report, 1986). Ten demonstration sites provided attendant services from three models: consumer- directed, agency-directed, and joint direction (mixture of consumer and agency). Using criteria that examined the amount of control consumers had over attendant services (i.e., control of hiring, training, payment, termination, schedule, activities, qualifications, and performance evaluation), only the York and Three Rivers sites met all the criteria for a consumer model; the Erie site met most of the criteria.
After two years, surveys were sent to 720 consumers and 380 were returned. Measures attempting to examine changes before and after receiving attendant services included: living arrangements, employment status, consumer activity, quality of life, and subjective ratings by consumers of their ability to do more than before attendant services.
Overall results revealed little change in consumer activity and employment status (although significantly more consumers were Iooking for work). Increases were recorded, however, for improved living arrangements: the number of consumers living alone increased from 60 before receiving services to 90 after, and the number of consumers living alone with parents decreased from 113 before to 83 after.
In general, consumers indicated substantial improvements in quality of life and improved ability measures. Ninety percent of the respondents were satisfied with their attendants. Of the 380 respondents, 42 percent preferred to have an agency locate and provide attendants. This is most likely due to the disproportionate number of consumers who had only experienced an agency-directed model. In fact, when model preferences were examined, consumers most often chose the model that they had experienced (Pennsylvania Evaluation Report, 1986).
Results of cross tabulations demonstrated that as number of attendant hours increased, so did quality of life ratings and improved living arrangements. Comparisons of consumer-directed sites versus agency-directed sites show that the Three Rivers site demonstrated the highest changes in increased consumer activity, improved quality of life, and consumer ability ratings.
The results of the Pennsylvania study are promising to advocates of a consumer-directed model. There are, however, limitations to the study. First, the study was designed as a program evaluation rather than an experimental analysis. Thus, subjects were all consumers receiving attendant benefits from the Department of Public Welfare rather than randomly selected subjects.
Second, only three of the sites met all or most of the criteria for a consumer-directed orientation. Therefore, most participants had very little experience or opportunity to direct their own attendants. Further, the study did not include individuals who were working, paying their own attendants, and successfully living in the community. Thus, a selection bias may have obscured additional differences between the two approaches.
Third, the authors attempted to examine the effects of attendant services on community activity and increased independence. However, no attempt was made to control other factors (e.g., access to transportation), which may influence activity and independence and may vary across demonstration sites. Further, level of independence was narrowly measured as changes in living arrangements, a factor that may require very dramatic changes in independence to be affected.
While the studies reviewed are promising, additional research is needed to analyze the effects of varying amounts of consumer control on consumers' lives (Ratzka, 1986). The paucity of available information may be due to the absence of "pure" consumer-directed models.
In designing future studies, it will be important to place equal, (and in some cases, such as improved health status, greater), weight on quality issues in relation to costs. For example, how heavily does increased consumer satisfaction weigh into the equation? Ratzka (1986) proposes a matched pair experimental design that permits comparisons on both quality and costs.
Consumer Competency in Managing Attendant Services
One of the most commonly cited problems in attendant services is consumers' lack of training and supervision skills (Slagle, 1982; Smith, 1981; Stelmach, Postma, Goldstein, & Shepard, 1981). Stelmach et al., in 1981 interviewed 40 attendants who worked directly for consumers. When asked to cite what they most disliked about their jobs, 25 percent cited inadequate training and supervision. In a similar study, 70 percent of the attendants who responded felt their employer/consumers could benefit from additional management training (Atkins, Meyer, & Smith, 1982). It should be noted that no comparative data are available to determine the dissatisfaction of agency-employed home health aides with the training they received.
Swenson (1987) surveyed 27 consumers who used attendant services. Only 4 percent of the consumers felt they were adequately prepared to train and supervise attendants. In a similar study, 39 consumers were surveyed, and 77 percent stated they would be interested in an attendant management course (Rosenberg, 1985).
Although numerous "how-to" manuals have been written to provide guidelines and strategies for training consumers to manage attendants, none of these procedures have been tested empirically (Laurie, 1979). To address this need, a consumer-directed attendant training model was developed and tested (Ulicny, 1987; Ulicny, Elwell, &Jones, 1985; Ulicny &Jones, 1985; Ulicny, Adler, Kennedy, &Jones, 1985). The model addresses the two most frequently cited management deficits of consumers: lack of specific job descriptions and inability to provide effective, objective feedback on attendant performance (Roberts & Sydow, 1981; Slagle, 1982). Major components of the model are development and use of attendant performance checklists that detail the steps in a particular work routine and systematic periodic feedback on attendant performance Jones, Favell, & Risley, 1983). The procedures have been evaluated formally with individuals having a variety of attendant service needs. Results of these studies have shown that, given appropriate training, consumers (including those with cognitive disabilities) can effectively hire, train, and supervise attendants.
One curious finding in these studies was that attendants trained by consumers, in all cases, performed better than agency-trained attendants. This finding may be due to the increased amount of training and ongoing performance feedback that consumers provide to attendants as specified by the model. All consumers may not need the level of training provided in this model, and some may need no training at all. Future research is needed to develop some methods for objectively determining the appropriate level of support services for individual consumers.
One of the most hotly debated issues in the provision of attendant services is who should be responsible for training attendants: an agency or consumers. Research on this topic is limited to surveys and interviews of attendants and consumers. In the Pennsylvania Evaluation Survey, 62 percent of agency-trained attendants believed their training was adequate, while 84 percent of consumer-trained attendants felt their training was adequate. In the same study, 90 percent of consumers using agency-trained attendants were satisfied with their attendants' training. No satisfaction measures were reported for consumers who trained their own attendants (Pennsylvania Evaluation Report, 1986).
The issue of agency versus consumer training is complex and individualized. Clearly, most consumers are capable of managing attendants effectively. However, some consumers may prefer not to train or manage their own attendants (Frieden, cited in Nosek, 1985). For these individuals, an attendant with previous training may be a necessity.
The issue then becomes not whether attendants should be trained by consumers or agencies, but under what circumstances and to what extent is each type of training (and especially supervision) appropriate. Unfortunately, that decision is often arbitrarily determined, based on a case manager's "perception" of a consumer's ability. Future study should be directed at developing procedures for making that determination based on objective information and maximum consumer participation.
The Cost of Services
Developing adequate cost analysis data related to the provision of attendant services is a complex task (Allard & Spence, 1986). The few studies that do exist focus on the costs of providing services in the community versus an institutional setting (e.g., Human Services Research Institute, 1981). In a recent study conducted in New York City, the cost of providing community-based services to ten individuals who used respirators was compared to costs of providing those services in the hospital. Included in the community costs were 24-hour attendant services, equipment rental and maintenance, visiting nurse services and medication, doctor costs, Supplemental Security Income, housing subsidies, and Medicaid transportation. Results of the analyses revealed an average annual cost savings of $21, 497 per person over Medicaid hospital costs (cited in Allard & Spence, 1986).
Stock and Cole (1977) compared average monthly costs in a cooperative living project, apartment with shared services, apartment with private services, and a nursing home. Specific costs included rent, meals, attendant assistance, transportation, and personal needs. Findings revealed that the most expensive residential seting was the private apartment ($840/month), followed by the nursing home, ($745/month), the apartment with shared services ($660/month), and the cooperative living project ($5570/month). In addition to being less costly, in a separate study comparing mobility patterns between individuals who lived in the cooperative living project and those who lived in nursing homes or at home, Kirksey (1973, cited in Stock & Cole, 1977) reported that cooperative residents had significantly more interactions with people other than family or attendants.
A study conducted in Australia by Phillips in 1981 factored in additional costs such as fuel, food, and the costs of unpaid assistance provided by family and friends. Results showed that costs for attendant services provided in the home were comparable to nursing home costs.
Litvak et al. (1987) examined expenditures per user in programs at various levels of conformity to the consumer-directed model. Results revealed a marked dependency for increased expenditures per person as the programs become more consumer-oriented. These figures may, however, reflect the fact that consumer-oriented programs tend to provide more service hours per consumer.
Clark and Faragher (1986) attempted to compare only the costs to government of providing attendant services. Data showed that costs per week for both the agency-directed ($215/week) and consumer-directed ($230/week) models were considerably less than comparable attendant services provided in a nursing home ($351/week). This data should be viewed as tentative, since no attempts were made to match groups on severity of disability or functional ability.
Attempts to compare costs in the Pennsylvania study (Pennsylvania Evaluation Study, 1986) between consumer-directed and agency-directed models are difficult, because of the inconsistency in the designation of model types. However, if costs per hour are compared in the three sites designated as most consumer-directed, against the costs in the other sites, the data indicates a mean cost per hour of $6.89 in the three sites versus $8.11 per hour in the sites that are predominantly agency-directed.
More research is needed on the costs of providing attendant services. In most studies of cost effectiveness, only the direct costs of attendant services are compared (Allard & Spence, 1986). Few studies take into account costs of additional support services, such as consumer training, environmental modification, or adaptive equipment. And few studies examine costs in relation to benefits such as improved quality of life.
In addition, no studies have been conducted long enough to include potential fiscal benefits of community living. For example, persons living in the community may be more likely to be employed.
Finally, no studies factor in the benefits of increased employment opportunities for attendants. For every consumer whose primary attendants were non-paid family members and friends, a new job is created once they receive attendant services. For example, in Pennsylvania, 52 persons were receiving public assistance and unemployment benefits prior to becoming attendants, compared with 30 after they began working (Pennsylvania Evaluation Report, 1986). In addition, work as an attendant may provide excellent employment opportunities for other persons with disabilities.
Clark and Faragher (1986) suggest that cost/benefit analysis is affected by: a) method used to measure costs, b) quality of service provision, c) level of disability, d) household arrangements of consumer, and e) efficiency of service provision. Future studies will need to develop a cost/benefit equation that takes into account this wide range of measures.
Obstacles to a Consumer-Directed Model
The available research on consumer-directed attendant services does not address three additional concerns. Nevertheless, because these issues are possible obstacles to adoption of a consumer-directed model they must be discussed.
Locating and retaining attendants. One of the most frequently cited problems confronting users of attendant services is locating and keeping good attendants (DeJong & Hughes, 1980; Swenson, 1987; Hutchins et al., 1978). In a recent survey of attendant service users in the Boston area, Kahn (1980) reports that consumers must find a new attendant an average of 5.86 times per year, almost every two months.
Much of this turnover can be attributed to the many employment disincentives related to work as an attendant. These include low pay, limited or no benefits, irregularity of payment, too few hours, low job status, and virtually no opportunity for advancement (Kahn, 1980; Young 1986). In a survey that asked 322 attendants to rate the three things they disliked most about their jobs, 42 percent of the responses indicated wages and benefits (Pennsylvania Evaluation Report, 1986).
While low pay may be an important factor in attendant turnover, it may not be the only factor (Atkins, Meyer, & Smith, 1982). In a survey of attendants, 80 percent responded that they knew their work was valued through verbal praise from consumers (Stelmach et al., 1981). This raises the possibility that consumers may be able to employ attendants longer by ensuring that non- pay incentives (e.g., regular performance feedback) are provided frequently (Ulicny, 1987).
Because of high turnover among attendants, consumers must often hire "anyone they can get," a practice that contributes to the incidence of criminal behavior by attendants toward consumers. For example, in a recent nationwide survey of 89 randomly selected consumers from independent living centers (ILCs), 38 percent of consumers reported an instance of theft by attendants (White, Roste, Bradford, & Ulicny, 1987). Future study is needed to determine how this data compares with the incidence of theft in other groups who employ individuals in the home.
One strategy that may be effective in locating reliable attendants is using attendant referral pools (Kahn, 1980). These pools usually are organized by a human service agency (e.g., ILCs), which maintains a directory of attendants who are available for work. When consumers need an attendant, they contact the agency, which provides them with a list of prospective attendants. Referral pools have advantages beyond convenience, since they typically screen attendants and provide increased employment opportunities and hours to potential attendants.
While referral pools appear to be a solution to the problem of locating reliable attendants, they require a great deal of staff time to organize and maintain (McCoy, Taylor, & Thompson, 1987). In addition, attendant pools may create situations where consumers become completely dependent on the agency to locate attendants, compromising consumer responsibility (DeJong & Hughes, 1980). One possible solution is the creation of consumer-directed referral pools (Ulicny, 1987). These pools could be run out of existing agencies, with consumers of attendant services assuming responsibility for their operation. The pools could be designed similar to food cooperatives where consumers donate a small number of working hours for membership.
Alternatively, an attendant referral pool might be operated by consumers with microcomputers as an in-home business, using a computer registry of attendants and consumers. A potential user could be matched with attendants based on factors such as hours available, area where attendant lives, attendant's access to transportation, previous experience, and wages required.
Control of employment contingencies. Current Medicaid regulations often prohibit direct payments to the consumer who then pays the attendant (Zukas, 1986). This may place consumers at a disadvantage, since whoever controls the pay often controls the conditions of service (Nosek, cited in Ratzka, 1986).
In a recent study, Ulicny (1987) found that attendants hired, trained, and paid by two consumers performed better than attendants who were hired, trained and paid by a residential program. This data reflects only two consumers, so results must be viewed as tentative. However, the results suggest that placing consumers in a situation where they do not control relevant employment contingencies may negatively affect the quality of services they receive. Additional large group study is needed for further examination.
Accountability. Current federal programs funding attendant services are confusing and inconsistent (Litvak et al., 1987). This confusion was compounded by a recent IRS ruling that states "if the persons for whom an individual performs services as an employee does not have control of the payment of such wages for such person, then the person having control of payment of such wages is responsible for withholding income tax and Social Security from the wages and reporting them to the IRS." This decision represents a potential threat to a consumer-directed attendant services model. Many states are now required to consider attendants as state employees. It is likely that states must also assume liability for attendants. This may increase states' desire to control who is hired to perform these services.
Unfortunately, there is little information concerning accountability issues as they relate to attendant services. Recommendations from the recent World Institute on Disability survey (Litvak et al., 1987) suggest that a conference of activists, users, and program administrators be convened to discuss these issues. Prior to that conference, funding agencies should provide monies to conduct a thorough policy analysis of existing laws, policies, and regulations related to the provision of attendant services.
The thrust of this analysis should be to develop models that enhance the independence of attendant service users and minimize legal liability of persons and agencies involved in the development, implementation, and ongoing provision of attendant services (Hodgesmith & Petty, 1987).
Conclusions and Recommendations
In general, results of this literature review support a consumer-directed model of attendant services. Research results indicate the consumer-directed model provides a wide variety of individual benefits to consumers. Research also has shown that consumers can effectively manage their own attendant services. Although costs of service data are equivocal, results generally support the consumer-directed model as a cost-effective approach.
It should be noted, however, that much of the empirical support for a consumer-directed model is based on results of a handful of studies, none of which has been conducted over an extended period of time. Recommendations of numerous experts in this field state that long-term, large-scale demonstration projects examining various parameters of consumer-directed attendant services are imperative (Litvak et al., 1987; National Council on the Handicapped, 1986; Ratzka, 1986). Questions for future research related to attendant services already identified by these experts include:
1. What is the extent of need for attendant services in this country?
2. What is the cost of providing services?
3. How effective (as defined on a number of dimensions) are various attendant services models?
4. What is the cost effectiveness of a national personal assistance service plan?
5. What is the feasibility of implementing such a plan?
6. What are the implications for the federal budget as determined by evaluating potential savings through reduced institutional costs and enhanced income potential of persons served?
7. What differential effects, if any, do personal assistance services with differing degrees of consumer control have on consumers' quality of life?
8. What are valid, consumer-oriented quality criteria for comparing and evaluating different personal assistance service models?
9. Can an effective continuum of control (from total consumer control to agency control) service model be established that provides maximum flexibility to consumers in choosing where along the continuum they receive services?
10. How can personal assistance users participate in service program policy determination, administration, and staff training?
11. What is the impact of personal assistance services on the development of children and teens?
12. How do personal assistance services vary for people with mental, intellectual, and physical disabilities?
13. How can outreach to potential personal assistance users be improved?
14. How would providing personal assistance on the job contribute to increasing employment of people with disabilities?
15. What is the economic and emotional impact on families who provide attendant services for a disabled family member?
The National Institute of Disability and Rehabilitation Research (NIDRR) has made a commendable effort in this area by supporting a number of research initiatives related to the research questions outline above (Federal Register, 1987).
There is general consensus among experts in the area of attendant services that the most immediate need is the establishment of a national policy and funding system for provision of attendant services (National Council on the Handicapped, 1986; Litvak et al., 1987). Establishment of that policy is expected to take some time.
This review of research does nothing to diminish the importance or urgency of meeting the goal of a national policy. However, it does point out how inadequate the database is relative to consumer management of attendant services.
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