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"Of course healthcare providers are going to take to position that attendants must be certified, licensed, medical," says Woody Osburn, Executive Director of Ohio Statewide Independent Living Council.

"But what they fail to understand is that we aren't sick. They buy into that 'sick' myth hook line and sinker, and spend a lot of time convincing the bureaucracy that they are right. That attitude is paternalistic, and pervasive throughout the medical community.

"The key is choice," says Osburn. "I, as a consumer of attendant services, want the option to choose an unlicensed, unprofessional, uncertified person to assist me in my day to day life. It's called 'dignity of taking risk."

Information provided by ADAPT's Jennifer Burnett, for "Roadblocks May Rise," in the May, 1997 issue of Mouth magazine.



The conventional wisdom says . . .
You're safer when you have "professionals" manage your "care."
Don't try to hire someone yourself:

  • You won't be able to check their background
  • They will steal from you.
  • They'll abuse you, beat you up.

The bureaucratic way to say this is "you won't be able to hire "caregivers who are qualified." (Quality of care" is a phrase you hear a lot from professionals.)

Go through an agency, says the conventional wisdom.

Everyone simply assumes that "professionally managed" in home services are superior regarding "client safety" than "consumer-directed" assistance.

Yet a recent large study in California shows that there is no higher incidence of abuse or safety problems when people were in charge of their own services, hiring their own workers.

The study, said the researchers, "should lay to rest the notion that the consumer-directed model of service provision " should be restricted.

Is a home health agency safer?

In September, 1999 The Bergen Record newspaper published a series of articles investigating licensed workers from professional home health care agencies in New Jersey:

  • "The heads of hospitals, nursing homes, and home health care agencies all objected to the $59 cost the state would charge for each background check. Nurses and doctors objected to having their backgrounds checked and eventually would be exempted [from the law] . . .
  • "Agencies do not routinely share information with one another about their aides' work history -- firings, missed assignments, criminal records. Typically, when agencies contact an applicant's previous agency, the line that asks 'Would you hire this person again?' is left blank."

Read the series in The Bergen Record.



Is a nursing home safer? You decide:

Every year, about one-fourth of the nation's nursing homes are found by inspectors to have deficiencies that caused actual harm to residents or placed them at immediate risk of death or serious injury, according to a report by Congress' General Accounting Office.  

  • A man in a Las Cruces, NM nursing home goes 23 days without treatment for bedsores.

  • Maggots are found in the bedsores of an 87-year-old man and ants swarm a woman in California nursing homes.

  • A man walks away from a Michigan nursing home and is found stabbed to death several days later; the home never knew he was gone.

  • An 83-year-old woman in a Minnesota nursing home dies after being given bacon and toast; a doctor had ordered only soft food because she had difficulty swallowing.

  • An 80-year-old woman in an Arkansas nursing home dies of a drug overdose administered by the home.

What nursing home survivors have to say.




The General Accounting Office found that about 40 percent of the nursing homes with the most serious deficiencies are repeat offenders.

A nurse's aide and a kitchen worker at the Oak Knoll Nursing Rehabilitation Center were arrested last month after an investigation into three acts of elder abuse on Sept. 14.
"Nursing Home Aides Accused of Abuse Allegedly Bribed One Patient to Assault Another," APB News, Nov. 12, 1999.

The families of two elderly women sexually assaulted by an employee at a Wellington nursing home last year filed suit Tuesday against the home. Both of the women, bedridden at the time of the attacks, have since died.
"Families sue over assaults in nursing home," The Wichita Eagle, November 11, 1999

An attorney representing the family of a Marlin nursing home resident who choked to death last month has requested that the home release the man's medical records along with any investigations into the choking incident. The 67-year-old resident, Lawrence Smith of Eddy, died on Sept. 12 at a Marlin hospital. "Our clients allege that Lawrence Smith did not receive proper care which resulted in his death by choking on or about September 12," said Waco Attorney John Mabry Jr., in a letter Tuesday to the Elmwood Nursing Center, where Smith had been living for the past year.
"Family of choking victim requests records on nursing home incident," Waco (Texas) Tribune-Herald, Oct. 19, 1999

A Lehigh County nursing home management company and four of its officers have agreed to pay the federal and state governments $2.1 million amid allegations they submitted fraudulent Medicare and Medicaid cost reports spanning three years. PennMed Consultants. . . manages 19 nursing homes in Pennsylvania. "It is important that we resolve these claims and continue to concentrate on what we do best -- providing the highest level of care for residents in our nursing homes," Francis Hayman said in a statement. The settlement won't affect operations at the 8-year-old company's nursing homes or PennMed's ability to participate in Medicare and Medicaid programs, he said.
"Nursing home managers were accused of fraud in medicare, medicaid reports," The Allentown (PA) Morning Call, Oct. 6, 1999

More than three-fourths of adult-care homes in southeastern Virginia have since 1994 violated state regulations governing the health and safety of elderly, mentally ill and mentally handicapped residents. And, according to a Virginian-Pilot analysis of data from the Department of Social Services, a small core of Hampton Roads adult homes has given sloppy, neglectful or abusive care while continuing to operate.
Adult-care homes: A pattern of neglect The Virginian-Pilot, June 21, 1999

"When consumer input is used in programming, the quality of services is improved, and there is often an increase in health, safety, well being, and satisfaction for all consumers."

Report of the National Blue Ribbon Panel on Personal Assistance Services, August, 1999


What government officials think . . .

The General Accounting Office says,

Recognizing their responsibility for protecting the most vulnerable consumers of personal care -- especially the elderly and mentally impaired -- state and local government officials with whom we spoke were generally inclined to support broad intervention strategies to protect consumers. Other things being equal, these officials seemed to prefer erring on the side of too much rather than insufficient protection. . . .

To some extent, a pivotal issue in the consumer protection debate is tolerance of risk to the consumer's personal safety. Some consumers and advocates are more willing to tolerate risk if it allows greater personal autonomy, while others believe that protection of vulnerable consumers must take priority....

In particular, the subject of criminal background checks for personal caregivers is a controversial issue. Advocates for younger adults with physical disabilities see this idea as unnecessary and overly intrusive, while state officials and other advocates see it as imperative to protect vulnerable consumers.

Within these groups there is also skepticism about the efficacy of background checks given the incompleteness of criminal justice databases. Other difficulties surrounding the issue include the expense of such background checks as well as reluctance at the state and local levels to fund them. . . .

Maine officials noted concerns about the liability of caregivers who provide services in accordance with consumers' instructions that may not meet quality or safety standards. In this regard, Maine officials stated that nurses have raised similar concerns.

Page 38 of Adults with Severe Disabilities: Federal and State Approaches for Personal Care and other Services,published May, 1999 (GAO-HEHS 99-101)Download from http://www.gao.gov/

From the California study . . .

Advocates for the elderly, including the organizations which make up the "aging network" have long favored formally organized professional supervision and accountability under the aegis of government-regulated home care agencies. . . . Professional home care agencies and their trade associations, not surprisingly, assert the superiority of the "professionally managed" model. Trade unions representing or seeking to organize home care aides express concern that states may choose to implement consumer direction in ways that go counter to workers' interests.

Critics of consumer-directed models of service delivery have expressed concerns about client safety under this model and have generally taken the view that consumerdirection should be restricted to a minority of clients (primarily younger adults) who social workers judge to be capable of hiring, firing and giving direction to their workers. This study provides no evidence in support of restricting availability of the consumer-directed model. . . .

When consumers were asked whether they had ever thought that their provider was responsible for money or other items disappearing from their homes, 89.1 percent of people who received services from "professionally-managed" agencies said "never" as compared to 93.5 percent of the people who hired their own workers--a statistically significant difference favoring the "consumer-directed model." Although instances of abuse, neglect, and mistreatment were occasionally reported, said the reserachers, "consumers in the consumer-directed model reported such occurrences either less frequently -- or no more frequently -- than consumers in the professional management model."

We believe that the results of this study with respect to client safety measures should lay to rest the notion that the consumer-directed model of service provision is best restricted to a minority of exceptional, "high-functioning" elderly and disabled individuals, whom professionals have assessed and found to be capable of managing their own services. In California, the overwhelming majority of elderly and disabled IHSS clients receive services through the consumer-directed model, with few untoward results. Although instances of abuse, neglect, and mistreatment were occasionally reported, consumers in the consumer-directed model reported such occurrences either less frequently or no more frequently than consumers in the professional management model. . . .

Client Safety

The client safety area has two dimensions--client-perceived physical and psychological risk and client sense of security. The "perceived risk" dimension summarizes client reports of having experienced abusive, frightening, or harmful behaviors by their providers (i.e, yelling, threatening, possible stealing, pushing or shoving, neglect, injury, alcohol use, unwanted sexual advances). The "sense of security" measure reflects client's feelings of being safe or unsafe with their aides and their perceptions of how well they get along with their aides. Neither of these safety measures was significantly influenced by service model type.

That model type does not predict client safety is an important finding because proponents of the PMM argue that clients are safer under this model of service delivery. Indeed, the presumed superiority of professional management in safeguarding client safety is so taken-forgranted that even some advocates of client direction believe that a CDM requires clients to make trade-offs between independence and risk and often base their advocacy of the CDM on a defense of clients' "right to risk." However, at least in California's IHSS, the client-reported incidence of abuse, neglect, and mistreatment is equally low in both service delivery models. Within the CDM, however, type of worker is a significant predictor of clients' sense of security with clients who have family providers experiencing a significantly greater sense of security.v Several non-model factors emerged as significant predictors of client reports of having experienced various forms of provider abuse. Clients who needed less paramedical help, those who had fewer workers in the past year, those who were more confident of backup help from family and friends, and those who used fewer formal services (other than IHSS) reported fewer incidents. Paradoxically, clients who said that they did not have someone to turn to for advice also reported fewer incidents of provider abuse. These findings suggest that, as might be expected, clients with the highest level of dependency are most at risk for provider abuse, regardless of which service model they are in. On the other hand, greater access to and reliance on informal as opposed to formal supports appear to protect clients from incidents of provider abuse. The one predictor that is counter-intuitive and difficult to interpret is that not having anyone to turn to for advice is associated with fewer reported incidents of provider abuse. It may be that some clients who are able to remain in the community despite lack of informal supports are unusually self-reliant and capable of looking after their own safety--but these are only hypotheses that would require testing in further research.

With respect to sense of security, clients who felt significantly more secure were more likely to be White (rather than Latino or Asian), believe they were not receiving enough IHSS service hours, live alone, are more confident of having backup help, have known their workers before hiring them, and have no language problems with their workers. Several of these relationships suggest that ease of communication with the worker and trust in the worker based on a prior relationship positively influence clients' sense of safety. That those who live alone should feel more secure seems more surprising because other findings generally point to the importance of informal supports in making it less likely that clients will actually experience threats to their safety. Perhaps those who live alone are a selfselected group who are unusually self-reliant and "fiercely independent." In other words, clients who live alone may feel more secure because they are more comfortable taking risks and are more confident in their own abilities to take care of themselves. Alternatively, those who live alone may perceive themselves to be more dependent on their workers, choose their workers more carefully, and, for that reason, feel safer with workers whom they trust. More research is necessary to understand the dynamics at work here. The issue is of interest because the disability rights movement has tended to equate independence and autonomy with being able to live alone and not relying on informal supports.

Client Empowerment

The client empowerment outcome area has three measurement dimensions within it: service choice and satisfaction, preferred role, and client assertiveness. "Service choice and satisfaction" measures client satisfaction with the amount of choice they had in four service areas (which provider, which tasks, how tasks were done, and when they were done) and the amount of choice clients had, particularly with respect to which tasks are done and how tasks are done. "Preferred role" measures client preferences for training and supervising their own workers. "Client assertiveness" reflects clients' desire to have a major say and feeling comfortable giving directions.

Service model is a strong predictor on two of these measurement dimensions: service choice and satisfaction and preferred role. Clients in the CDM as compared to the PMM and, within the CDM clients with family as compared to non-family providers, reported significantly more satisfaction with respect to amount of choice as well as more actual choice and greater preference for taking charge of training and supervision.

It is particularly striking, for example, that, in this study, the professional management model was not found to have better outcomes with respect to client safety. The professional management model has long been regarded by both its own advocates and advocates of consumer-direction as the "safer" approach. Indeed, advocates of consumer direction typically argue for their approach by defending consumers' "right to risk." In view of the widespread belief that the professional management model is the approach that minimizes client risk--albeit at the expense of restricting consumer choice and control--it was unexpected and surprising that the study provided so little evidence in support of this conventional wisdom. Indeed, in the bivariate analyses, with respect to reported instances of neglect and suspected theft by providers, consumers in the consumer-directed model reported significantly fewer negative experiences. . . .

About the study itself

California's In-Home Supportive Services (IHSS) Program was chosen as the locus of the study primarily because the program serves a large number of clients (approximately 200,000 at any point in time) and also serves a broad range of clients in terms of age, severity of disability, and the nature of the diseases or conditions responsible for their functional disabilities. . . .

The research design called for sampling by dividing (stratifying) the population into different groups and then selecting a certain number of cases at random from each group for the study sample. Stratifying in this way increases the precision of the estimates. The target sample for this study was first divided into the two service delivery models. Within each, the target sample was further divided by age (over and under 65) and severity of impairment (severe and not severe). The plan called for a sub-sample of 500 clients to be randomly selected (within stratum) for each service delivery model, yielding a total client target sample of 1,000. The plan for the worker target sample, totaling 500, was to select a sub-sample of 250 for each model from the pool of workers serving the clients in the study sample. . . .

From A.E. Benjamin, R.E. Matthias, and T.M. Franke, Comparing Client-Directed and Agency Models for Providing Supportive Services at Home, report for the Assistant Secretary for Planning and Evaluation, HHS (April, 1999).


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