Virginia's Consumer-Directed Personal Assistance Services Program: A History and Evaluation.

Over the course of the last decade, Virginia has developed a model personal assistance services program that stresses consumer involvement and consumer direction of services. Administered by the Virginia Department of Rehabilitative Services (VDRS), this program was recently the focus of a 3-year outcomes evaluation conducted by the National Rehabilitation Hospital Research Center (NRH-RC). In the following sections, the history of Virginia's consumer-directed personal assistance program will be detailed, as will the findings of NRH-RC's evaluation. The policy implications of the evaluation's findings will then be discussed, in the context of current policy initiatives.

Virginia's consumer-directed personal assistance services (CD-PAS) program has a long history of consumer involvement. Since its inception nearly a decade ago, it has focused on increasing the well-being and independence of Virginia's consumers with disabilities. A brief history of the program follows.

The PAS Project

The Virginians with Disabilities Act, which requires that state funded programs and facilities adhere to the federal legislation similar to Section 504 of the Rehabilitation Act, was passed by the Virginia General Assembly in 1986. Independent living advocates argued that these laws, while an important step, neglected to address the needs of consumers who could not access buildings, transportation, or programs without adequate personal assistance services. As a result of these concerns, a cross-disability coalition obtained funding through the state's Developmental Disabilities Council to study the status of attendant services in Virginia and other states, identify policy issues that posed barriers to independence, and design a pilot program to address those problems. This PAS project was directed by an advisory board which included several PAS users and advocates, directors of independent living centers, and state agency representatives.

The first goals of this PAS project were to determine the level of need for personal assistance services and to understand the everyday concerns and priorities of people with disabilities. In order to obtain this information, 12 widely publicized public hearings were held across the state. A toll-free telephone number was made available for those who wanted to participate in the project but were unable to attend the public hearings. In addition, home visits were conducted to ensure the participation of consumers who were unable to leave home, talk on the phone, or participate in any other way.

Institutionalization concerns. The most commonly voiced consumer concern was the unwillingness to live in a nursing home, coupled with the realization that the available attendant services would not permit them to live at home in the community for an extended period of time. It was found that family members providing assistance were frequently unable either physically or financially to provide the level of help needed and other volunteer sources were unpredictable. For many, the choice to live at home without adequate services had seriously jeopardized their health to the extent that employment or any other independent living activity was not a consideration.

Medicaid concerns. It was also found that the fear of nursing home placement was consistent among recipients of Medicaid Waiver programs, even though these services were established solely to prevent nursing home placement. This fear was linked to the inability to receive adequate services at home, which was often directly tied to the availability of staff in licensed home care agencies--the only providers eligible through Virginia's Medicaid program. Consequently assistance was limited to a few days per week, provided only during normal working hours, or unpredictable, depending upon the number of calls an aide could complete each day. Some areas of the state had no providers at all, including the Northern Virginia/Washington, D.C., metropolitan area where agencies would not accept the Medicaid reimbursement rate. Added to this problem were restrictions placed on home care aides that prevented them from doing any bowel or bladder care or assisting the recipient outside the home.

Employment concerns. People with disabilities were concerned that they would lose access to personal assistance through Medicaid waivers if they were to become employed, based on Medicaid eligibility rules stating that recipients can receive no more than the current Supplemental Security Income (SSI) rate. Those individuals who were employed felt that they could not maintain their employment without more consistent assistance. These consumers typically relied on family or other unpaid assistance, and tended to experience a high absentee rate and tardiness at work when assistance was not available. Others were paying for some help but had very little income left to pay rent, utilities, transportation costs, or other routine expenses. Consequently, employment could not be sustained unless predictable volunteer help was available or their earnings were sufficient to pay for additional services privately. In most cases, neither of these options was realistic.

Concern with environmental barriers. A large number of people with disabilities explained that their independence was impeded by barriers within the home. In many instances, the lack of independence and the level of assistance needed was directly tied to the consumer's inability to get in and out of the bathroom or to leave the home. The inability to lock the door or use the phone independently posed substantial levels of fear when others were not available. Although home modifications or adaptive devices could alleviate these problems, consumers did not know about them and/or could not afford them.

The Virginia Consumer-Directed PAS Program

Virginia's consumer-directed personal assistance services (CD-PAS) program, administered by the Virginia Department of Rehabilitative Services (VDRS), began providing services to 18 people with disabilities in 1990. As of the first quarter of calendar year 1998, 320 consumers are participating in the program. The characteristics of the CD-PAS program were developed specifically to address the concerns of individuals in the PAS pilot project outlined in the previous section. Specific characteristics of Virginia's program will be outlined in the following paragraphs.

Needs assessment. VDRS contracts with centers for independent living (CIL's) to conduct needs-assessments of individuals requesting services through the CD-PAS program. The CIL's PAS coordinator determines the type of assistance required during a home visit. A standard allotment of time is awarded for most tasks, while other activities that are more individually-based, such as range of motion exercises or help with school activities, are calculated separately. The assessment also includes an evaluation of the home, school, or work area to determine whether environmental barriers create the need for additional assistance. If home modifications or adaptive devices could enhance the delivery of personal assistance, either through reduced cost or increased consumer safety, these costs may be eligible for program funding. The consumer is also assisted in identifying other funding sources for modification or devices.

Consumer management of assistants. Once the weekly hours of PAS required has been determined, the consumer may schedule the hours throughout the week as they are needed. Recipients recruit, select, schedule, and manage one or more assistants of their choice. Assistants may help with any tasks identified in the needs assessment and listed on a contract negotiated between the consumer and personal assistant. Personal assistants are not required to present any certification or licensure in order to work, but must verify to the consumer that they are legally permitted to work in the United States. The quality of work performed is rated solely by the consumer.

Income and resources of the PAS recipient are considered when determining the cost of the service. A copayment is calculated based on both consumer income and expenses. Allowable deductions include disability-related expenses, mandatory payroll withholding, dependents allowance, private health insurance premiums, and child care expenses for working parents.

Support services. These are provided by CIL's. Services include preliminary assessment and development of consumers' independent-living skills. CIL's provide training in personal assistant management, which includes developing job descriptions based on personal preferences and needs, interviewing tips, and communication skills. Centers also do periodic recruitment of potential assistants and offer an orientation in typical needs of people with disabilities and the independent living focus of CD-PAS. This recruitment and training of potential assistants is conducted primarily by users of personal assistance. CIL's compile a registry of potential assistants which is then made available to any consumer upon request.

In sum, the Virginia CD-PAS program incorporates all of the following characteristics of the pure independent living model, as outlined in Attending to America (Litvak, 1987):

* No medical supervision is required.

* Services offered include personal maintenance and hygiene, mobility, and household assistance.

* The maximum service limit exceeds 20 hours per week.

* Service is available 24 hours a day, 7 days a week.

* The income limit is greater than 150 percent of the poverty level.

* Individual providers can be utilized by the consumer.

* The consumer hires and fires the attendant.

* The consumer trains the attendant.

* The consumer participates in deciding on the number of hours and type of service he or she requires.

Evaluation of Virginia's Consumer-Directed PAS Program

Because the Virginia consumer-directed PAS program incorporates all of the above listed characteristics which are highly valued by the independent living movement, it is a particularly useful site to gage the extent to which these values are translated into positive outcomes and potential policy. The National Rehabilitation Hospital Research Center (NRH-RC), with a 3-year grant (1994-1997) from the National Institute on Disability and Rehabilitation Research (NIDRR), conducted a series of consumer surveys to determine the effect of Virginia's CD-PAS program on a wide variety of consumer outcomes.(1)

Study design. NRH-RC's evaluation of the Virginia CD-PAS program was designed as a quasi-experimental comparison of individuals with disabilities receiving consumer-directed PAS and a similar group of individuals on the waiting list to receive services. The study consisted of four rounds of mailed questionnaires, administered approximately every 6 months beginning November 1994. Findings from the first round of questionnaires, in which 62 CD-PAS recipients and 62 people on the waiting list responded, will be highlighted in this article. While the study team originally believed the two groups to be similar in most regards, it was found that there were important differences which were related to the criteria for moving people off the waiting list and into the program.

Individuals meeting the eligibility criteria to receive consumer-directed PAS are removed from the waiting list and entered into the CD-PAS program based on certain risk-based criteria. Individuals who are in a nursing home or are at risk of being placed in a nursing home are given priority placement in the CD-PAS program, as are people who are experiencing acute health problems due to the need for nonmedical assistance services. As a result of these risk-based placement criteria, the sample of people receiving services reported having more severe disabilities and poorer health than their waiting list counterparts. These differences in health and functional status were kept in mind and controlled for when analyzing the relationship between receipt of CD-PAS and a wide variety of outcomes. There were no differences between the PAS and waiting list groups in terms of common sociodemographic variables such as race, sex, education, marital status, or age.

Outcomes

The NRH-RC evaluation team was interested in determining the relationship between the receipt of CD-PAS and a variety of outcomes categories through a comparison of the PAS and waiting list groups. The outcomes categories of interest were: healthcare utilization patterns; control over one's life; employment and productivity; and satisfaction with PAS services.

Healthcare utilization. Those receiving consumer-directed PAS had consistently higher rates of general preventive healthcare utilization compared to those on the waiting list. In nearly every 6-month period measured in each of the four waves, a greater percentage of PAS recipients than waiting list respondents reported having a general medical examination, a cholesterol check, and a blood pressure check. Similarly, females in the PAS group were more likely to report OB/Gyn visits, pap smears, and breast exams over the course of a 6-month period, in nearly every wave.

Further comparisons indicated lower rates of utilization among the PAS group for doctor visits due to a medical condition, emergency room visits, hospital days, skilled nursing facility days, and visits from home health providers. The only healthcare utilization category where PAS respondents had higher rates than those on the waiting list was for days in a rehabilitation facility.

Control over one's life. Control over one's life was measured by the 10-item control subscale of the Personal Independence Profile, which was developed by Margaret Nosek and her colleagues at Independent Living Research Utilization. This scale asks people to rate their feelings of control over material comforts, participation in active recreation, health and personal safety, relationships, socializing, work, and other areas of life. After controlling for the fact that the PAS group was more severely disabled and in poorer health than those on the waiting list, it was found that those receiving CD-PAS had significantly greater feelings of control over their lives than those not receiving consumer-directed services. These findings regarding control over one's life is most likely related to the finding that the group of people receiving CD-PAS was consistently more likely to report living in their own home, apartment, or university dormitory, relative to those on the waiting list.

Employment and productivity. Employment rates were found to be consistently higher for those in the PAS group than for those on the waiting list. In the first round of the survey, 22 percent of CD-PAS recipients were employed, compared to 11 percent of those on the waiting list, despite the fact that those in the PAS group tended to have more severe disabilities and to be in poorer health. After controlling for these differences in disability level and health status, this difference in employment rates was statistically significant.

Productivity was measured more generally by the Occupation subscale of the Craig Handicap Assessment & Reporting Technique (CHART), developed by Gale Whiteneck and his colleagues at Craig Hospital in Englewood, Colorado. This scale is a weighted summary of weekly hours spent in activities such as paid employment, school, homemaking, home maintenance, volunteer work, recreational activities, and self-improvement activity. The receipt of consumer-directed PAS was significantly associated with greater productivity as measured by the CHART. This is the central finding of an article recently published by the evaluation team in the Journal of Rehabilitation Outcomes Measurement, (Richmond, Beatty, Tepper, & DeJong, 1997).

Satisfaction with PAS services. Consumer-directed PAS recipients scored consistently higher on the Personal Assistance Satisfaction Index (PASI), than did their waiting list counterparts who were receiving PAS that was not consumer-directed. The PASI is a 16-item battery developed by Margaret Nosek and her colleagues at Independent Living Research Utilization to measure satisfaction with all aspects of personal assistance services. The comparison group for this satisfaction analysis were those on the waiting list receiving PAS through Medicaid waivers or through the expenditure of personal funds. On 14 of the 16 individual items, CD-PAS recipients were more likely to report being highly satisfied than the comparison group. The greatest differences in satisfaction were for those items measuring control over choice of assistants, control of assistants' work schedule, authority to direct personal assistants, and flexibility of services. For more detailed information on this association between the receipt of CD-PAS and satisfaction with services, please refer to an article recently published by the evaluation team in the Archives of Physical Medicine and Rehabilitation (Beatty, Richmond, Tepper, & DeJong, 1998).

In sum, the results of the NRH-RC evaluation of Virginia's CD-PAS program suggest that consumer-direction in the delivery of personal assistance services is related to positive outcomes. Increased utilization of preventive healthcare, increased feelings of control over life, increased rates of employment and productivity, and relatively high rates of satisfaction were found to be positively associated with the receipt of consumer-directed services. Virginia's CD-PAS program was developed over an extensive period of time, throughout which the needs and priorities of individuals with disabilities was the central and driving concern. By prioritizing consumer involvement throughout the development of the program, Virginia has created a program that not only serves to minimize the risk of institutionalization and deteriorating health, but also promotes the independence and well-being of its consumers.

Translating Virginia's Experience with CD-PAS Into Policy

The passage of federal personal assistance legislation appears to be the highest priority for national disability organizations, including the National Council on Independent Living (NCIL) and Americans Disabled for Attendant Programs Today (ADAPT). The experience of the Virginia CD-PAS program may help to inform the efforts of these groups and legislators as they work toward the goal of a federal PAS program.

NCIL and ADAPT have successfully advocated for the introduction of consumer-controlled PAS legislation in both the House (HR 2020, sponsored by Gingrich, R/GA), and the Senate (S. 879, sponsored by Feingold, R/WI) of the United States. A hearing on HR 2020 was held before a packed audience of disability advocates and healthcare providers in March 1998. At this writing, the Senate bill has not been scheduled for a hearing.

The Senate bill establishes a new and very detailed program of Home and Community Based Services for people with ADL limitations, or those who need in-home support due to mental disabilities. The House bill is more general in nature, and limited to those who need nursing home services or who would be eligible for placement in an Intermediate Care Facility for the Mentally Retarded (ICF-MR). Because the House proposal is an additional Medicaid service intended to shift Medicaid funds away from nursing home placement towards home and community-based services, it would serve only those who are Medicaid eligible--in effect, only those who receive SSI or who are very poor.

The research findings cited in this article will enable advocates to go beyond statements of need and personal anecdotes to provide valuable empirical evidence when advocating for PAS legislation. Evidence from the Virginia CD-PAS study can be used to set forth a model to "flesh out" the House legislation. The Assistant Secretary for Planning and Evaluation, Department of Health and Human Services, has been charged with recommending a cost effective, efficient PAS model on which to base Administration proposals. Additionally, several states, including Arkansas and Iowa, are considering the implementation of various PAS models to decrease institutionalization and home care costs. Statistically sound and valid research indicating that consumer-controlled PAS users experienced higher levels of satisfaction, lived more independently and autonomously, utilized preventive healthcare services more consistently, and had higher employment rates will be invaluable as these evaluations take place.

Researchers have shown CD-PAS to be significantly less costly on a per capita basis than nursing home placement, or than agency sponsored models of personal assistance (Prince, Manley, Whiteneck, 1993). However, if Congress is to seriously consider comprehensive PAS legislation, meaningful estimates of the aggregate costs of implementing such legislation must be developed. These estimates must not only consider costs of community-based care for individuals who would avoid nursing home placement, but the "induced demand" of those who would substitute paid PAS for informal or unpaid services. While additional research that compares the costs of various PAS models is much needed, findings from the evaluation of Virginia's CD-PAS program suggest that at least some cost savings will be realized, based upon the increased employment and productivity and increased utilization of preventive healthcare services among consumers of consumer-directed personal assistance services.

Note

(1.) NIDRR Project No. H133G40070: The Effect of Consumer-Directed Personal Assistance on the Outcomes of Persons with Physical Disabilities.

Bibliography

1. Beatty, E, Richmond, G., Tepper, S., & DeJong, G. (1998). Personal assistance for people with physical disabilities: Consumer-direction and satisfaction with services. Archives of Physical Medicine and Rehabilitation, 79(6).

2. Litvak, S., Zukas, H., & Heumann, J. (1987). Attending to America: Personal assistance for independent living: a survey of attendant services programs in the United States for people of all ages with disabilities. Berkeley, CA: World Institute on Disability.

3. Prince, J., Manley, M., & Whiteneck, G. (1995). Self-managed versus agency-provided personal assistance care for individuals with high level tetraplegia. Archives of Physical Medicine and Rehabilitation. 76(10), 919-923.

4. Richmond, G., Beatty, E, Tepper, S., & DeJong, G. (1997). The effect of consumer-directed personal assistance services on the productivity outcomes of people with disabilities. Journal of Rehabilitation Outcomes Measurement. 1(4), 48-51.

Please direct all correspondence to:
Phillip Beatty
National Rehabilitation Hospital
Research Center
1016 Sixteenth Street, NW
Fourth Floor
Washington, DC 20036

The research cited in this article was funded by the National Institute on Disability and Rehabilitation Research, Office of Special Education and Rehabilitative Services, U.S. Department of Education.

Mr. Beatty is a Research Associate at the National Rehabilitation Hospital Center. Ms. Adams is Manager of Personal Assistance and Nursing Home Outreach Services at the Virginia Department of Rehabilitative Services. Dr. O'Day is Associate Director of the National Rehabilitation Hospital Research Center.