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Comparing outcomes of persons choosing consumer-directed or agency-directed personal assistance services.

For many in the disability community, rehabilitation counseling is increasingly tied to reimbursement systems through which persons with disabilities are able to optimize their value to society in collaborative and facilitative ways. Counseling can help the client consider many choices, not just those using a one size fits all approach. As an example, the recent growth of state run Medicaid Home and Community-Based Waivers offers persons with disabilities expanded availability to personal assistance services (PAS). Counselors can help clients review the best approach to facilitating pathways towards independence for waiver participants. Additionally, counselors can assist their clients in further enhancing their knowledge and employable skills once they have moved from institutions or skilled nursing homes to less restrictive settings.

In the Disability Statistics Center's 2002 report, it was estimated that in 1994-95 almost 13.2 million individuals in the U.S. received an average of 31.4 hours per week of help with activities of daily living (ADLs) or instrumental activities of daily living (IADLs) (LaPlante, Harrington, & Kang, 2002). However, many individuals polled reported they needed more help than they received and were forced to rely on a patchwork of informal services that did not meet their true needs (LaPlante, et al., 2002; LaPlante, et al., 2004). The inadequacy of this service delivery system has caused a large number of vocal consumers and users of PAS to declare that an expansion for PAS will be essential to fulfill the independent living (IL) principle of choice and control (Kafka, 1998).

Personal assistance services (PAS) are defined as a range of human and mechanical assistance provided to people with disabilities of any age who require help with routine activities of daily living (ADLs) and health maintenance activities (Doty, Kasper, & Litvak, 1996; Stone, 2000). These activities include bathing, dressing, ambulating, feeding, grooming, and some household tasks such as meal preparation and shopping. In a broader sense, Doty and colleagues suggest that PAS refers to assistive technologies, home modifications, psychosocial rehabilitation, and other specialized products and services (Doty, et al., 1996). If people with severe disabilities lack personal assistants to help perform their activities of daily living and maintain health, they cannot live independently, promote their health, secure and maintain employment, and participate actively in their communities (Beatty, Richmond, Tepper, & Dejong, 1998; Nosek, 1990). Many people on waiting lists for this service may have their quality of life compromised (Gallagher, 2003). Community living for all people with disabilities has been an important goal of the independent living movement since its beginning (Beatty, Adams, & O'Day, 1998; Dejong, 1979). An essential component for achieving independence in a community setting is the ability to perform personal care activities with or without assistance (Dejong, Batavia, & McKnew, 1992; Eustis, 2000; Leutz, 1998; Nadash, 1998; Velgouse & Dize, 2000).

There are three service delivery models in PAS: agency-directed (AD), consumer-directed (CD), and a combination of these two approaches. Under the agency-directed model, the agency recruits and selects an assistant, schedules the client's care, and supervises quality of care delivered to the client. Under the consumer-directed model, developed largely through the efforts of the independent living movement, consumers themselves are responsible for hiring, training, scheduling, managing, and firing their personal assistants (Doty, Benjamin, Matthias, & Franke, 1999; Micco, Hamilton, Martin, & McEwan, 1995).

The early work of Beatrice Wright influenced the consumer-directed collaborations mandated in the 1992 Rehabilitation Act Amendments and emphasized the importance of client participation in all service delivery environments (1973, 1981). More recently, Kosciulek's consumer-directed theory of empowerment (CDTE) was used to explain the increased consumer direction in disability policymaking and service delivery as a facilitator of increased community integration, empowerment, and quality of life for people with disabilities (1999a, 1999b). The core value behind the consumer-directed model is the positive autonomy of consumers. This autonomy encompasses proactive participation in the design and implementation of PAS, where autonomy is defined as a matter of personal choice and control over everyday routines (Kapp, 1996; Dautel & Frieden, 1999; Sabatino & Litvak, 1992). Consumer-directed PAS aims to maximize the independence, flexibility, social participation and productivity of people with disabilities. In contrast, proponents of agency-directed services argue that accountability, professional authority and quality assurance are at least equally important factors to consider (Benjamin, Matthias, & Franke, 2000). For reasons that may be tied to these factors, older consumers tend to choose the agency-directed model and younger consumers embrace the consumer-directed model (Eustis & Fischer, 1991).

Empirical Studies Related to Outcomes of Consumer-Directed Personal Assistance Services

A number of studies support the notion that people using consumer-directed PAS have better outcomes than their counterparts whose care is agency directed. Prince et al. (1995) investigated whether people with a high level of tetraplegia had better perceived quality of life, health status, and lower cost of care depending on whether they used agencies for their caregivers or independently hired and trained their caregivers. Using the Rand-36, LSI-A, PASI, PIP and CHART (Whiteneck et al., 1992) as measurement tools, the self-managed group showed significantly better health outcomes, with fewer re-hospitalizations and diminished preventable complications. They also experienced greater life satisfaction and significantly lower costs of paid care.

Three studies used consumer surveys to determine the effect of Virginia's consumer-directed PAS program on consumer outcomes (Richmond et al., 1997; Beatty, Adams, & O'Day, 1998; Beatty, Richmond, Tepper, & Dejong, 1998;). Richmond et al. (1997) evaluated the relationship between using consumer-directed PAS and employment outcomes of individuals with physical disabilities and found that consumer-directed PAS increased productivity, while participants' health status was positively correlated with higher occupation scores. Beatty, Adams, and O'Day (1998) found that consumers receiving consumer-directed PAS had higher rates of preventive healthcare utilization and lower rates of utilization for doctor visits, emergency room visits, hospital days, skilled nursing facility days, and visits from home health providers. Additionally, consumer-directed PAS users reported greater feelings of control over their lives, significantly greater productivity in terms of employment rates, and higher satisfaction with PAS. Results of Beatty, Richmond et al. (1998) looked exclusively at consumer satisfaction, concluding that consumer-directed PAS was associated with higher satisfaction.

Work done in both California and Arkansas point towards similar results. Benjamin, Matthias, and Franke (2000) compared the outcomes of an alternative service delivery model in California's In-Home Supportive Services Program and found that clients in consumer-directed care had more desirable outcomes: satisfaction with service, empowerment, and quality of life. In Arkansas, Foster, et. al. (2003) evaluated that states' Cash and Counseling Demonstration by comparing outcomes of traditional agency-directed care with consumer-directed care. Under the Cash and Counseling approach, consumers were provided a monthly allowance equivalent to what would be spent under traditional Medicaid for the care authorized, and they were given greater flexibility in using this allowance. The self-direction approach was associated with improved consumer satisfaction and quality of life, while unmet needs for care were reduced without compromising health or safety (Foster et al., 2003).

None of these studies included cost-related analysis such as average monthly cost per person and utilization of needed medical services. Because our study includes both consumer-directed PAS and agency-directed PAS users, it allows us to explain differences in outcomes between these groups. A robust sample size improves our ability to generalize results of this study as well.

Description of the Physical Disability Waiver Program

Research participants were enrolled in the Home and Community Based Service (HCBS) Physical Disability (PD) Waiver in Kansas in 1998. HCBS PD waivers in Kansas serve individuals age 16 through 64 who have been determined physically disabled by Social Security standards (The State of Kansas, 1996). To be eligible for a waiver, one must meet two eligibility criteria: financial need and appropriateness for institutional care. Income level must not exceed 300% of the Supplemental Security Income (SSI) federal benefit level. Consumers must also meet the long-term care functional threshold criteria established by the Kansas Department of Social and Rehabilitation Services (SRS), the state Medicaid agency, and require personal assistance during any part of the day as established by a qualified independent living counselor. The number of individuals served in this program since its founding in January 1997 was 2,676 in 1997, 3,799 in 1998, 4,227 in 1999, 4,645, in 2000, 4,666 in 2001 and 4,633 in 2002.

The PD waiver provides three important new services to consumers that traditional Medicaid coverage does not: personal assistance services (PAS), independent living counseling, and assistive services (The State of Kansas, 1996). The consumer demand for PAS is substantial because personal care attendants assist people who have difficulties providing their own personal care or other daily living activities: bathing, dressing, ambulating, feeding, grooming, and some household services such as meal preparation and shopping. Independent living counselors are reimbursed in order to coordinate all personal services with the consumer's written authorization. Consumers may choose any qualified provider who can meet their personal service needs. Family members other than parents of minors or spouses may be reimbursed when providing this service. The reimbursement ranged from $8.50 per hour to $13.25 per hour maximum in 1998. Independent living counseling provided by qualified independent living (IL) counselors is required for all PD waiver consumers and was reimbursed at the rate of $30 per hour, limited to 120 hours per year.

Assistive services are those services that meet an individual's assessed need by modifying or improving an individual's home through the provision of adaptive equipment. Tangible equipment or hardware, such as technology assistance devices, adaptive equipment, or environmental modification, may be substituted for personal services when they are identified as cost-effective alternatives for the individual's care plan. Purchase is limited to a maximum lifetime expenditure of $7,500 per consumer.

The Kansas PD waiver is operated directly by the state Medical assistance unit of the state Medicaid agency. To ensure quality of care, the state Medicaid agency has established safeguards such as provider standards and state licensure or certification requirements to protect the health and welfare of consumers. To control quality, the Center for Medicare and Medicaid Services is charged with monitoring state implementation of waivers and determining whether statutory requirements have been met. States are charged with independent assessment of waiver programs by external evaluators and case review by area Medicaid management staff.

While there are published studies demonstrating that consumer-directed care offers better consumer-control and autonomy, there are no published studies that investigate other outcomes such as the average monthly cost and use of Medicaid services per person, especially non-hospital--ambulatory services between groups of consumer-directed and agency-directed care users. This study analyzes differences in costs and service use between users of consumer-directed PAS and agency-directed PAS among individuals with disabilities who are using the Home and Community Based Services (HCBS) Physical Disability Waiver in Kansas.

Our research questions are intended to allow us to understand these differences. They are:

1. How do health service use and their costs differ between persons receiving consumer- directed and agency-directed PAS within the Kansas HCBS Medicaid Waiver?

2. What are differences in perceived health status between persons receiving consumer--directed and agency-directed PAS based on their recent experiences in the program?

3. Are there differences in satisfaction with PAS based upon selection of consumer--directed or agency-directed PAS within the Kansas HCBS Medicaid Waiver?


Data Collection

This study uses secondary data from 1998 gathered from the consumer satisfaction survey of the Kansas HCBS PD waiver, Medicaid billing data, and the Universal Assessment Instrument (UAI).

In 1998 the Kansas Foundation for Medical Care (KFMC) in conjunction with the Life Span Institute at the University of Kansas and the Kansas Department of Health and Environment conducted the consumer satisfaction survey. During February, 1998, the survey packets (cover letter, survey, consent form, stamped self-addressed return envelope) were mailed to consumers. For undeliverable surveys, invalid addresses were checked against the Medicaid Management Information System (MMIS), changed as necessary, and the surveys were re-mailed. As completed surveys were returned to KFMC, they were routed to data entry. Post-survey reminder post cards were mailed in early March to non-respondents. The cutoff date for receiving completed surveys was the end of that month. Data entry of all survey responses was completed in April, 1998. The survey questionnaire consisted of 19 questions and four domains: disability limitations/secondary health conditions, consumer satisfaction with PAS, health status, and medical care.

The Kansas Department of Social Rehabilitation and Services (SRS) provided Medicaid billing data for the HCBS PD Waiver for the period from April to September in 1998. These data include patient identification, procedure code and number, allowed amount, allowed services, billed amount, payment made, and number of claims. Medicaid enrollment data were entered manually into an SPSS database after being received as paper printouts that listed individual enrollment dates for each person in the waiver. The Universal Assessment Instrument (UAI) was used to determine eligibility for HCBS waiver applicants.


The sampling frame for the consumer survey was all consumers in Kansas receiving services under the HCBS Physical Disability Waiver as of November 1, 1997. The total population covered by the waiver then was 2,140. From this population, 29 consumers had moved out of state or were deceased, reducing the sample to 2,111 people, of whom 1,184 consumers completed surveys. The raw response rate was 55.3% (1,184 returned survey/2,140 population) and an adjusted rate was 56.1% (1,184 returned surveys/2,111 adjusted population). Complete Medicaid billing, consumer survey and UAI data were available for 720 individuals. Finally, among the 720 participants, 15 people had not enrolled in the PD waiver in 1998 and were excluded, resulting in our final sample of 705 people. Disabilities represented by waiver recipients included spinal cord injury, cerebral palsy, spina bifida, muscular dystrophy, multiple sclerosis, arthritis, AIDS, amputations, and epilepsy.

To protect participants' confidentiality, an authorization form to release consumer UAI information was used. Advisory Committee on Human Experimentation forms and a consent form were also used for maintaining the participants' confidentiality. To protect confidentiality, all quantitative data were entered into a computer database using a unique identifier not identified with the participants' names.


As dependent variables, outcomes were measured by three constructs: cost, physical health outcome, and satisfaction with PAS. Cost in this evaluation was measured by paid claims for the six month period after the onset of the waiver (April - September, 1998). Total monthly average cost per person consisted of the sum of three service types: ambulatory, hospital inpatient, and long-term care, where ambulatory referred to all physician and other outpatient medical bills associated with direct medical care. The average monthly ambulatory cost per person was calculated as the Medicaid allowed payment/number of waiver participants/number of months enrolled in Medicaid. This was the average per person monthly amount of non-hospital medical care spent by Medicaid for each enrollee. Because service use units vary by subcategory--for example, use of nursing home services cannot be compared to use of physician services on a one to one basis--regression analysis of the relative impact of independent factors on our dependent variables was performed only for average ambulatory monthly per person costs divided by users of consumer-directed care and agency-directed care. We then used linear regression modeling to test for predictive factors, such as gender, race, region, severity indicator, and age. For the purposes of our study, we coded race as white/non-white and calculated the severity score as the average of ADLs and IADLs.

Hospital inpatient service was measured using hospital stay days. The average monthly hospital inpatient care cost per person was calculated as the Medicaid allowed payment/number of waiver participants/number of months enrolled. Long-term care was calculated to include all levels of care, such as home reserve days, nursing facilities (NF) level of care. The average monthly long term care cost per person was then calculated as the Medicaid allowed payment/number of waiver participants/number of months enrolled.

The average monthly costs were calculated in 16 subcategories, including durable medical equipment, hospital outpatient care, radiology, therapy, emergency, ambulatory medical care, etc. (see Table 4). Determination of categories was based upon CPT or other comparable procedure coding mechanisms. Physical health outcomes used were health perception, health status, the number of doctor visits, and frequency of seeing a doctor after enrollment in the physical disability waiver.

Health perception was measured on a scale of "excellent," "good," "poor," or "very poor" to indicate how people with disabilities perceive their health. Health status was measured by a scale using "much better," "somewhat better," "the same," "somewhat worse," and "much worse" to describe changes in health over one year. In order to improve accuracy, we asked waiver enrollees to select a category of number of doctor visits (seen in Table 5) ranging from every week to about once every 10-12 months. Frequency of seeing a doctor after enrollment in the physical disability waiver program was also collapsed into five categories: "a lot more," "more," "the same," "less," and "a lot less."

Overall satisfaction with PAS, satisfaction with the number of PAS hours allowed per week, and meeting individual needs were each measured. Satisfaction with PAS indicates how satisfied individuals were with Personal Attendant Care or HCBS in the last 12 months. The terms "HCBS" or "physical disability" waiver were used interchangeably in the survey. The five categories of satisfaction with personal care attendants were "very satisfied," "satisfied," "neither satisfied nor dissatisfied," "dissatisfied," and "very dissatisfied." The utility of HCBS in helping free hours that may lead to social activities in the last 12 months was measured by four categories: "always," "usually," "rarely," and "never." Meeting needs indicates whether or not the needs of the consumer were met with personal attendant services.

Demographic characteristics of each participant were also captured, including age, gender, race, region, and severity indicator (Table 1). PAS is a categorical variable that indicates who selected and hired personal care assistants (PCA). The two categories of care were consumer-directed and agency-directed care. Age strata were based upon frequency distribution that identified lowest 25%, the middle 50%, and the top 25%. Race was divided between white and non-white. Region was used as a categorical variable that indicates in which area people with disabilities live by county population density: frontier (< 7 persons/square mile), rural (7-25 persons/square mile), densely settled rural (> 25 persons/square mile), metropolitan statistical areas (includes a city of 50,000 or total population of at least 100,000). Severity indicator of disability consisted of the average value of ADLs and IADLs. Average of ADLs were counted by sum of score of each item divided by six, since ADLs are measured by using six questions such as bathing, dressing, toileting, transfer, walking/mobility, and eating. Average value of IADLs were calculated by sum of score of each item divided by seven, since IADLs were measured by using seven questions such as meal preparation, shopping, transportation, use of telephone, laundry, housekeeping, management of medication. The four categories of each variable are independent, supervision needed, physical assistance needed, and unable to perform. Based upon frequency distribution that identified lowest 25%, the middle 50%, and the top 25%, the severity indicator was identified into three categories: the least severely disabled (lowest 25%), moderately disabled (26-74%), and the most severely disabled (top 25%). Thirteen persons did not have valid scores and were excluded.


The following statistical analyses were performed to correspond to each of our research questions:

1. How do health service use and their costs differ between persons receiving consumer--directed and agency-directed PAS within the Kansas HCBS Medicaid Waiver?

T-tests were first used to determine statistically significant differences in means for ambulatory, hospital inpatient, and long term institutional care costs for Kansas Physical Disability Waiver participants receiving either consumer-directed or agency-directed personal attendant services. Subsequent analyses broke out average costs for service types between consumer-directed and agency directed participants using independent sample t-tests to measure differences between groups.

To predict monthly average costs, a stepwise, linear regression model was constructed for each group, adjusting for severity of disability, region of the state, gender and race. Cook's Distance was used to measure the effect of large monthly ambulatory payments, and was found to be close to one. While the range of values for both consumer-directed and agency-directed care was large, clusters of high-end values precluded further outlier analyses.

2. What are differences in perceived health status between persons receiving consumer- directed and agency-directed PAS based on their recent experiences in the program?

Chi-squared tests were used to determine statistically significant differences in perceived health status between participants of consumer-directed and agency-directed PAS based upon categories of excellent, good, poor or very poor. Self-reported changes in health and mental health status, in addition to frequency of physician office visits, were additional measures compared between groups that helped illustrate differences in health status to a greater degree between these two groups.

3. Are there differences in satisfaction with PAS based upon selection of consumer- directed or agency-directed PAS within the Kansas HCBS Medicaid Waiver?

While the primary measure for this question involved using a chi-squared test to measure statistically different distributions of categories of satisfaction with the waiver, two additional measures related to satisfaction were also used: whether persons felt that there were sufficient hours provided by PAS, and whether persons' individual overall needs were being met. Both these measures were analyzed using chi-squared tests.


Demographic Characteristics

Table 1 describes characteristics of people using both consumer-directed and agency-directed care. Younger (age 18-41) were 4 times more likely to use consumer-directed care than people using agency-directed care (139 vs. 34). The overall mean age of people who used consumer-directed care was 48, compared to 52 years among agency-directed care users (p <. 0.01). Generally, females used the PD Waiver more than males (Fox & Kim, 2004). People using agency-directed care tended to reside in more metropolitan than rural areas of Kansas (109 people, 53.2%), while people who used consumer-directed care lived in more rural (132 people, 26.4%) or densely settled rural areas (157 people, 31.4%). This difference is statistically significant. The mean severity indicator was 2.36 for people using consumer-directed care and 2.13 for people using agency-directed care (p < .01), indicating that somewhat more severely disabled persons were selecting consumer-directed care.


Table 2 summarizes total differences in ambulatory and long term care costs, and hospital inpatient costs for waiver participants of consumer-directed and agency-directed care.

The total monthly average cost per person was $2,049 for consumer-directed care and $2,114 for agency-directed care. Thus, the people using consumer-directed care cost, on average, $65 less than people who used agency-directed care. However, because of relatively high standard deviations, this difference did not approach statistical significance.

For non-hospital, non-long term care related services, people using consumer-directed care cost $202 more than people who used agency-directed care. These figures were not statistically significant. Consumer-directed care users for these services cost Kansas Medicaid an average of $1,697 per month, while agency-directed care users cost $1,495.

For hospital inpatient and long term care, people using consumer-directed care cost less than people who used agency-directed care. The average cost of hospital care for persons who were hospitalized was $1,581 for people using consumer-directed care versus $2,308 for people using agency-directed care. When the average hospital inpatient cost per person was calculated for all waiver participants, the cost to Medicaid was $316 for consumer-directed care, and $518 for agency-directed care. Average monthly costs for long-term care were $2,604 for people using consumer-directed care and $5,154 for people using agency-directed care due to expensive outliers of users of agency-directed care. When the average monthly long-term care cost per person was calculated for all waiver participants, the Medicaid monthly average was $36 for consumer-directed care and $101 for agency-directed care. However, because of relatively low numbers of persons receiving institutional overnight care in both groups and the high variances within each group, neither of these differences approaches statistical significance.

Average ambulatory monthly costs of users of consumer-directed care and users of agency-directed care were linearly modeled in a stepwise manner against predictive factors (Table 3). While the range of costs was large, outlier analysis was limited to determining acceptable Cook's Distances for two reasons: there were clusters of high end costs in both categories, and we felt that in order to model true cost estimates to the state including all cases would be preferable. Severity of disability and rural/urban residence for the consumer-directed consumers care group were significant predictors of average monthly costs. For those with more severe disabilities and those residing in metropolitan areas, average monthly costs were higher among users of consumer-directed care. For those using agency-directed care, severity of disability and race were significant predictors of average monthly costs. Those with more severe disabilities and those from non-white racial groups experienced higher average monthly costs when using agency-directed care. In both groups, severity of disability was the strongest predictor of high ambulatory monthly costs.

For most services, average monthly costs of consumers of agency-directed care were higher than those using consumer-directed care, while not statistically significant in most services (Table 4). For instance, the average monthly cost of agency-directed consumers who received hospital outpatient care was $135, and the average cost of consumer-directed care users for hospital outpatient care was $126. For transportation, the average monthly cost for consumers who chose agency-directed care ($104) was much higher than that of consumers who chose consumer-directed care ($68). For nursing care, the average cost of consumers who chose agency-directed care was twice that of consumers using consumer-directed care. For home health and mental health care, the average cost of agency-directed care consumers ($502 and $207, respectively) was much higher than that of consumers who chose consumer-directed care ($395 and $111). Among services, only the difference in PAS between the two groups was statistically significant. For PAS, the average cost for consumers who chose consumer-directed care ($1,284) was much higher than that of consumers who chose agency-directed care ($816). While not significant due to either relatively small subsets of people using the services or variances that were driven by a relatively few individuals using high volume of services, many differences in the cost of Medicaid services for those using consumer-directed care compared with those using agency-directed care in case management fees were none the less revealing. Differences in hospital outpatient care, transportation, nursing care, home health, and mental health all suggest that people using consumer-directed care require less money to utilize professional health care, and they become more independent using personal assistance services while living in their communities.

Physical Health Outcomes

Table 5 summarizes health outcomes. We concentrated our analysis on differences between consumer and agency directed care for discrete variables. In the interest of clarity, robustness and policy relevant interpretation, and because we did not detect any apparent interaction effects between variables, we limited our analysis to non-parametric chi-squared tests. Among persons using consumer-directed care, 34% considered their health was good, compared to 38% of people using agency-directed care. Forty-two percent of people using consumer-directed care and 39% of people using agency-directed care said their health was poor. There is no statistical significance between the two groups. To address the impact of the PD waiver on health, the question was asked, "Compared to one year ago, how would you rate your health in general now?" For persons receiving consumer-directed care, 34% said their health was the same, compared to 29% receiving agency-directed care. Forty one percent of consumer-directed care users and 42% of those using agency-directed care said that their health was "somewhat worse" or "much worse" than the previous year. These differences are not statistically significant. When asked, "Do you see a doctor more or less after PD waiver?" about 60% of consumers from both groups responded that it was the same.

Satisfaction with PAS

Overall, consumers of consumer-directed care were more satisfied with PD waiver services than consumers of agency-directed care, though this varies somewhat depending on the strength of the response and is not consistent for all categories (Table 5). For the question, "How satisfied with HCBS?" 64% of people using consumer-directed care were very satisfied with PAS, compared to 47% of people using agency-directed care. Yet 29% of people using consumer-directed care were satisfied with PAS compared to 38% of people using agency-directed care services. The overall effect, however, leans towards significantly greater satisfaction with consumer-directed care.

Differences in satisfaction levels with personal attendants between the two groups are also statistically significant. For the question, "how often do you have enough PAS hours?" 26% of those using consumer-directed care responded "always" compared to 20% of people using agency-directed care. Of those using consumer-directed care, 33% responded "usually" to having enough PAS hours while 26.0% of people using agency-directed care felt this way. This trend was reversed for persons telling us they "rarely" had enough PAS (21% consumer-directed versus 15% agency-directed), when pooling "rarely" and "never" again indicated a clear advantage among persons using consumer-directed care. For both groups, it appears that their needs were being met with PAS (97% for consumer-directed care and 95% for agency-directed care). There is a significant difference between the two groups in meeting individual needs through PAS.

Discussion and Implications

The purpose of this study was to investigate the relationship between consumer-directed and agency-directed care with respect to Medicaid reimbursed health care services and costs, self-reported physical health, and satisfaction with PAS. We found that ambulatory Medicaid costs were 13.5% higher for people using consumer-directed care, even though their number of claims was less. Conversely, hospital inpatient and long term care costs were 39% and 64% lower for people using consumer-directed care, 31% and 49% among only those using each service. This finding suggests that people who had gone without medical care previously were now receiving it and having an increased number of options to maintain health and reduce secondary conditions. Lower costs for hospital inpatient and long term care for this group is consistent with improved self-care leading to lower institutionalization, an effect for which the lack of statistical significance in these differences, due primarily to large standard deviations in mean differences, may not be a critical factor.

One item for which statistically significant cost differences existed between groups was that of personal assistant services. Costs for personal assistance services among persons using consumer-directed care were 57% higher than those of agency-directed care users. One influencing factor, illustrated through our modeling, was that people with more severe disabilities were more likely to self-direct at a commensurate (20%) higher cost when adjusted for severity. Part of this could be due to a need for more intensive and potentially more intrusive services. Thus, the consumer might wish to have a greater number of choices in who provides these services. In cases where the personal assistant was a family member, the assistant might also have a greater interest in ensuring the consumer remains well cared for and has access to appropriate preventive services. Severity of disability is a predictor of high ambulatory monthly costs. A related factor illustrated in our model is 30% more persons with consumer directed care tend to live in rural, non-metropolitan areas, leading to less costly services based on regional differences in the cost of services.

With respect to our second research question, virtually no differences were found between measures of health status between consumer and agency directed consumers. While advocates of agency directed services may argue that increased quality control may exist in an agency structure that is lacking among consumer directed service provision, our findings suggest otherwise. Choice of PAS control appears to have a minimal influence on health outcomes.

Our third research question looked at satisfaction. Medicaid consumers with disabilities who direct their own PAS in this study were 8% more satisfied with PAS services than were people who use agency-directed care, when categories of "very satisfied" and "satisfied" were pooled and compared. Revealingly, however, this increased to 35% when only "very satisfied" was analyzed by itself. Among people with disabilities who direct their own care, it appears that there is a significant majority who are strongly satisfied with services they receive under the waiver--enthusiastic advocates of self-directed care. In spite of some slight variations within categories, the most telling indicator of why this effect occurs may be because 28% more persons directing their own care found that there were either "always" or "usually" enough PAS hours available for their needs to be met (59% vs. 46%). By directing one's own care, a truer estimate of the hours required to maintain satisfaction with personal attendant services may be possible.

Taken in total our findings suggest a value to consumer-directed care that reinforces how quality of PAS can be measured when people with disabilities exercise full choice and control over their own care, even and perhaps especially among persons whose disabilities are relatively severe. As Geron (2000) has suggested, PAS should be evaluated with multiple measurements including cost, health status, or satisfaction with the services. In addition to cost and health service use, factors such as satisfaction with personal assistance services and access to agencies in rural areas must be considered in helping persons with disabilities evaluate their service options and in evaluating the effectiveness of these state-run programs nationwide. Future qualitative work that builds upon our findings will hopefully serve to help counselors, rehabilitation professionals, disability researchers, and others understand the more detailed mechanics of how personal assistance services differ between consumer and agency directed services. The end result will be higher quality, more cost effective services that optimize independence and quality of life for many.

PAS planning for people with disabilities has become a national priority. The National Council on Disability (NCD) in 1996 devoted an entire chapter on this issue in its disability policy agenda, "Achieving Independence: The Challenge for the 21st Century" (National Council on Disability, 1996). The national advocacy group, American Disabled for Attendant Programs Today (ADAPT), has developed a legislative proposal, the Medicaid Community Attendant Services and Supports Act (S. 971) (MICASSA), in order to establish a national program of community-based attendant services and support for persons with disabilities of all ages (ADAPT, 2002). The Bush administration's New Freedom Initiative working in cooperation with the Department of Health and Human Services, has initiated nationally-funded demonstration projects designed to address workforce shortages of community service direct care workers (New Freedom Initiative, 2002). Healthy People 2010, a document that sets forth public health goals for the nation, noted an emerging need for empirically supported evidence for efficacy and effectiveness of PAS planning for target populations (U.S. Department of Health and Human Services, 1998).

With the shift towards an independent living (IL) model within the disability services, many proponents of PAS have emphasized the need for a consumer-controlled and directed PAS model of service delivery which includes determining services rendered, their frequency and duration, and selecting, training, and supervising personal attendants (Eustis, 2000; Stone, 2000). This approach gives people with disabilities more freedom and responsibility over their lives. People with disabilities make good choices that maintain their health and safety, even as they improve their satisfaction and quality of life (Foster et al., 2003).

When preparing consumers for purposeful life activities such as employment, the achievement of this goal can only be accomplished if there are community resources and supports. All links in this chain of support must be strong to achieve the consumer's goal, including quality and consistent PAS. Understanding the differential approaches to receiving PAS can be helpful to rehabilitation counselors and other professionals as they perform case management to determine which approach may be most advantageous for each consumer's needs. Based on our findings, rehabilitation professionals should strongly consider placements that appear to maximize the potential for positive outcomes among certain clients. Our research suggests that consumer-directed care may meet this need better for persons with severe disabilities and those living in rural areas. Alternately, agency- directed care may be the more appropriate choice for persons who are older and those living in more urban settings.

While there are advantages to both approaches to PAS, the consumer-directed approach can have practical benefits for consumers with disabilities who are able to use this approach. It helps them become more disciplined in terms of managing their attendants and less-dependent upon other external agencies to oversee their care. Rehabilitation professionals should ensure that there is proper consumer training to manage attendants so that neither consumer nor attendant is exploited or mismanaged. Future research might explore whether those who use the self-directed approach to PAS are more likely to have more positive rehabilitation outcomes such as employment compared to those using agency-directed PAS.


Using Medicaid billing data has both advantages and disadvantages in disability research (Fox & Kim, 2004). Persons for whom incomplete Medicaid data existed were eliminated from the study. Data were analyzed for services provided during a six-month period between April to September of 1998. This limited period of data collection might impact the results because of a historical bias associated with collecting data for only a portion of one year. It might also lead to questions of whether the survey respondent's disability levels stayed the same between 1997 and 1998. Specifically, the UAI data used in the study was collected in 1997, while the CSS data used was collected in 1998, which might result in possible discrepancies. As with most secondary data analyses, controlling recurrent validity is an important issue. There were substantially greater numbers of persons receiving consumer-directed care in our sample than those receiving agency-directed care. It is possible these may include some people with disabilities who have exorbitant medical and personal care expenses that inflate the consumer-directed care costs. These outlier cases may somewhat obscure our findings. However, while lack of statistical significance in some differences may be attributable to outlier cases, for the majority of comparisons, overall sample size allowed for adequate power.


Work on this project has been funded under an agreement between the Kansas Department of Health and Environment and the University of Kansas, Grant #21391.


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Kyung Mee Kim

Soongsil University

Michael H. Fox

University of Kansas Medical Center

Glen W. White

University of Kansas

Kyung Mee Kim, Ph.D., Assistant Professor, Soongsil University Dept. of Social Work, Sangdo 5-dong, Dongjak-Gu Seoul, Korea 156-743. Email:
Table 1.
Characteristics of Kansas Physical Disability Waiver Enrollees:
Participants of Consumer-Directed and Agency-Directed Personal
Assistance Services

Variable Consumer- Agency-
 directed directed

n 500 205
 42-57 227 (45.5%)
 >58 134 (26.8%)

Mean age of participants 48 (SD = 11.43) 52 (SD = 9.35)
 Male 170 (34.0%) 52 (25.4%)
 Female 330 (66.0%) 153 (74.6%)

 White 423 (84.6%) 174 (84.9%)
 Non-white 77 (15.4%) 31 (15.1%)

 Frontier 27 (5.4%) 5 (2.4%)
 Rural 132 (26.4%) 47 (22.9%)
 Densely settled rural 157 (31.4%) 44 (21.5%)
 Metropolitan 184 (36.8%) 109 (53.2%)

 Less severely disabled 94 (19.2%) 76 (37.6%)
 Moderately disabled 259 (52.9%) 89 (44.1%)
 Most severely disabled 137 (28.0%) 37 (18.3%)

Mean severity of participants 2.36 (SD = .62) 2.13 (SD = .58)

Variable [chi square] / t df

Age 9.92 ** 2
 139 (27.8%) 34 (16.6%)
 106 (51.7%)
 65 (31.7%)

Mean age of participants -4.01 *** 703
Gender 5.02 * 1

Race 0.01 1

Region 17.91 *** 3
 Densely settled rural

Severity 27.29 ** 2
 Less severely disabled
 Moderately disabled
 Most severely disabled

Mean severity of participants 4.60 *** 690

Note. Chi-squared tests and T-tests were used to determine
statistically significant differences between participants of
consumer-directed and agency-directed PAS. * p < .05. ** p < .01.
*** p < .001.

Table 2.
Ambulatory, Hospital Inpatient, and Long Term Institutional Care Costs
for Kansas Physical Disability Waiver Participants

Services Consumer-directed Agency-directed
 Count Count
 Mean Mean
 (95% Confidence (95% Confidence
 Intervals) Intervals)

Ambulatory Services
# using services 500 205
Monthly average cost
per person($) $1,697 $1,495
 ($1,559 - $1,835) ($1,293 - $1,768)
Hospital Inpatient
n 500 205
Monthly average hospital
inpatient cost per $316 $518
person ($) ($222 - $410) ($179- $856)
# using services 100 46
Monthly average hospital
inpatient cost per $1,581 $2,308
person($) ($1,198 - $1,964) ($878 - $3,738)
Long Term Care (LTC)
N 500 205
Monthly average LTC cost
per person($) $36 $101
 (-$2-$75) (-$32 - $233)
# using services 7 4
Monthly average LTC cost
per person($) $2,604 $5,154
 (-$19 - $5,228) (-$3,280 - $13,588)
Total monthly average cost
per person ($) $2,049 $2,114
 ($1,869 - $2,230) ($1,608 - $2,619)

Note. Student T-tests were used to determine statistically significant
differences in means between participants of consumer-directed and
agency-directed PAS. None were statistically significant at p, < 05.

Table 3.
Summary of Stepwise Linear Regression Results for Monthly Ambulatory
Costs among Persons Participating in the Kansas Physical Disability


 B SE B B [DELTA][R.sup.2]

Constant -463.87 427.22
Severity Indicator 1,131.95 ** 102.41 .45 .237
Region -553.88 ** 132.32 -.17 .024
Gender -218.18 132.01 -.07 .005
Race 272.42 176.23 .06 .004
Adjusted [R.sup.2]


 B SE B B [DELTA][R.sup.2]

Constant 131.25 688.42
Severity Indicator 942.73 ** 231.10 .27 .081 (1)
Region -398.69 270.20 -.10 .012 (3)
Gender 426.38 307.59 .09 .008 (4)
Race -899.94 * 375.10 -.16 .033 (2)
Adjusted [R.sup.2] 0.263 .117

Notes:. * p < = .05. ** p < .001.

Age was excluded from the stepwise regression, using.20 entry, 80
removal criteria.

All VIF tolerance were within normal range (1-2) for tested

For Agency-Directed, order of entry was severity, race, region, and
gender (in parentheses).

Cook's Distance was used to measure the effect of large monthly
ambulatory payments, and found to be close to 1. While the
range of values for both consumer directed and agency directed
care was large, clusters of high-end values precluded further
outlier analyses.

Table 4.
Average Monthly Costs Per Person for PD Waiver Participants Using
Services in Each Subcategory

Services Consumer-directed

 Cost ($) % user (n)

N 500
Durable medical equipment 141 36% (180)
Hospital Outpatient Care 126 61% (307)
Radiology 52 55% (273)
Therapy 76 11% (57)
Emergency 17 23% (117)
Ambulatory Medical Care 30 81% (403)
Transportation 68 25% (125)
Nursing care 356 11% (53)
End stage Renal disease 647 3% (17)
Home health 395 15% (75)
Case management 65 29% (143)
Mental health 111 14% (70)
Treatment 136 34% (168)
Independent Living Counseling 43 95% (473)
Personal Assistance Services * 1,284 96% (482)
Assistive services 332 3% (14)

Services Agency-directed

 Cost ($) % user (n)

N 205
Durable medical equipment 138 32% (65)
Hospital Outpatient Care 135 65% (134)
Radiology 48 59% (121)
Therapy 14 12% (25)
Emergency 17 29% (59)
Ambulatory Medical Care 26 80% (164)
Transportation 104 34% (70)
Nursing care 611 25% (51)
End stage Renal disease 1204 5% (10)
Home health 502 22% (46)
Case management 116 29% (59)
Mental health 207 14% (29)
Treatment 204 33% (67)
Independent Living Counseling 49 90% (185)
Personal Assistance Services * 816 94% (193)
Assistive services 191 2% (4)

Note. Date Source: Kansas Medicaid Management Information System.
Durable medical equipment: Cane, walker, hospital bed, oxygen
concentrator, lens, etc. Hospital Outpatient Care: Treatments and
diagnosis by hospital settings, including Lab. Therapy: Physical
therapy, occupational therapy, speech therapy, training, and
medication group. Emergency: Emergency department visit. Ambulatory
Medical Care: Treatment at doctor office, physician supervision of
patients, periodic evaluation and management, and medical conference
with physician. Transportation: Ambulance service, including
air-ambulance, gas and non-Ambulance medical transportation. Nursing
care: Skilled nursing services not administered in a long term care
facility. Home health: LPN visit, home health aid service, and home
health attendant care. Case management: Discharge day management,
home visitation. Mental health: Individual psychotherapy,
psychological testing, psychiatric diagnostic interview. Treatment:
Drugs or medicine billed separately, such as medicine for testing,
solutions such as nutritional supplements, and disposable medical
items such as gauze pads, needle, catheter, dressing, urinary bag,
blood. Independent living counseling (ILC) and Personal assistance
services: Explained at the part of the description of Physical
disability waiver program. Assistive services: Adaptive equipment,
environmental modification.

Independent sample t-test was used for comparison. * p < .01.

Table 5.
Physical Health and PAS Satisfaction

Variable Consumer- Agency-
 directed directed

Would you say your health?
 Excellent 11 (2.4%) 3 (1.5%)
 Good 158 (34.0%) 76 (38.2%)
 Poor 196 (42.2%) 78 (39.2%)
 Very poor 100 (21.5%) 42 (21.1%)
 Total 465 (100.0%) 199 (100.0%)
Compared to 1 year ago, how would you
rate your health?
 Much better 28 (5.8%) 13 (6.6%)
 Somewhat better 93 (19.3%) 44 (22.2%)
 The same 163 (33.9%) 57 (28.2%)
 Somewhat worse 141 (29.3%) 58 (29.3%)
 Much worse 56 (11.6%) 26 (13.1%)
 Total 481 (100.0%) 198 (100.0%)
Do you see a doctor more or less after
PD waiver
 A lot more 28 (5.8%) 12 (6.2%)
 More 48 (10.0%) 25 (12.9%)
 The Same 292 (60.0%) 115 (59.3%)
 Less 88 (18.3%) 34 (17.5%)
 A lot less 26 (5.4%) 8 (4.1%)
 Total 482 (100.0%) 194 (100.0%)
How satisfied with HOBS
 Very satisfied 309 (64.0%) 93 (47.4%)
 Satisfied 139 (28.8%) 75 (38.3%)
 Neither satisfied nor dissatisfied 22 (4.6%) 15 (7.7%)
 Dissatisfied 10 (4.6%) 8 (4.1%)
 Very dissatisfied 3 (0.6%) 5 (2.6%)
 Total 483 (100.0%) 196 (100.0%)
How often have enough PAS hours?
 Always 110 (25.5%) 35 (20.2%)
 Usually 144 (33.3%) 45 (26.0%)
 Rarely 89 (20.6%) 26 (15.0%)
 Never 89 (20.6%) 67 (38.7%)
 Total 432 (100.0%) 173 (100.0%)
Are your needs being met with Personal
Assistance Services
 Yes 443 (96.9%) 172 (94.5%)
 No 14 (3.1%) 10 (5.5%)
 Total 457 (100.0%) 182 (100.0%)

Variable [chi square] df

Would you say your health? 1.49 3
 Very poor
Compared to 1 year ago, how would you
rate your health?
 Much better 2.09 4
 Somewhat better
 The same
 Somewhat worse
 Much worse
Do you see a doctor more or less after 1.66 4
PD waiver
 A lot more
 The Same
 A lot less
How satisfied with HOBS 19.40 ** 4
 Very satisfied
 Neither satisfied nor dissatisfied
 Very dissatisfied
How often have enough PAS hours? 21.29 ** 3
Are your needs being met with Personal 2.13 ** 1
Assistance Services

Note. Chi-squared tests were used to determine statistically
significant differences between participants of consumer-directed
and agency-directed PAS. * p < .05. ** p < .01.
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Author:White, Glen W.
Publication:The Journal of Rehabilitation
Geographic Code:1USA
Date:Apr 1, 2006
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