You Can Do It

State Initiatives Broaden Access to
Consumer-Directed Personal Assistance Services
Through the Use of Intermediary
Service Organizations

by Susan A. Flanagan, MPH; Pamela S. Green and JD Nancy Eustis, Ph.D.

Ms. Flanagan was a Program Manager at The MEDSTAT Group, Cambridge, MA, at the time of the study. She is currently an Assistant Director in the Health, Education, Human Services Division at the U.S. General Accounting Office in Washington, DC, and an Adjunct Assistant Professor at the Boston University School of Public Health. Ms. Green is a Healthcare Law and Policy Consultant and an Adjunct Lecturer on Law at the Harvard School of Public Health. Dr. Eustis is Associate Dean for Resident Instruction in the Humphrey Institute of Public Affairs, University of Minnesota.

The following is an article from American Rehabilitation Volume 24, Number 3 Summer Autumn 1998 Personal Assistance Services Part 1 of 2.
American Rehabilitation is the official publication of the Rehabilitation Services Administration (RSA) 330 C Street S.W. Washington D.C. 20202-2531

States have been providing personal assistance services (PAS) to persons with disabilities and chronic conditions for well over two decades through Medicaid and state-funded programs. These services have traditionally included assistance with, the basic activities of daily living (ADL's), such as bathing, dressing, grooming, and transferring, as well as assistance with instrumental activities of daily living (IADL's), such as shopping, housecleaning, and meal preparation, and may be delivered in the home, the workplace, and in a recreational setting. Recently, a growing body of literature has brought to a wide audience good news about a mode of service delivery that embodies many of the principles of today's consumer-oriented healthcare goals: consumer-directed personal assistance services (CD-PAS) (Scala & Mayberry, 1997; Richmond et al., 1997; Doty et al., 1996; Sabatino & Litvak, 1995; Flanagan, 1994; DeJong et al., 1992; Sabatino & Litvak, 1992).

Consumer-directed modes of financing and delivering personal assistance services permit a person with a disability comparatively greater choice and control over all aspects of service provision, including:

• choice of provider,
• selection of services and related supports,
• service plan and schedule, and
• ongoing management of services (Sabatino & Litvak, 1992).

CD-PAS differs from traditional agency- based PAS in that the individual served (the consumer) exercises choice and control over the nature, scope, and level of services he or she receives from the provider, instead of the provider having most, if not all, control over how, when, and where service is delivered (Doty et al., 1996).

No single service delivery model encompasses the entire range of possible varieties of CD-PAS that might exist but, in general, a service can be described as consumer-directed if the persons receiving the service are responsible for selecting their attendant(s), setting the terms and conditions of work, taking on the administrative responsibilities of an employer (payroll, taxes), supervising, disciplining, and, if necessary, terminating the employment (Doty et al., 1996). Moreover, some CD-PAS programs allow a consumer to have a representative (e.g., family or nonfamily member) manage the employer-related responsibilities associated with an attendant on the consumer's behalf (as in the case of a person who may have a cognitive impairment or mental retardation). Permitting representative participation can greatly increase consumers' access to CD-PAS.

When a third party payer finances PAS (e.g., private insurance or publicly-funded programs such as Medicaid), certain limitations may be placed on the consumer's ability to exercise choice and control over his or her PAS. These include prohibitions on providing cash benefits, hiring family members, and on the range of allowable services the attendant may perform. Public payers may also require training and certification of attendants, nurse supervision, and conduct of criminal background checks.

There are advantages to all stakeholders in allowing consumers more choice, autonomy and control over their PAS. Consumer advocates of CD-PAS programs argue that persons with disabilities and chronic conditions are self-directing consumers of services and should be afforded as much independence and autonomy as possible in decisions regarding the types, amounts, and sources of PAS they can access (DeJong et al., 1992; Doty et al., 1993). Being allowed to direct their own PAS means consumers get the services most desired and needed and on the terms most convenient for them. For example, this might mean being able to access PAS before 8 a.m. or after 5 p.m. to accommodate a consumer's work or school schedule, having services provided at work or school in addition to receiving them at home, and purchasing services at an hourly rate significantly lower than traditional agency-based PAS.

For the state, allowing the consumer to assume greater responsibility relieves the state of some of the day-to-day responsibilities of managing the services while providing PAS that more appropriately reflect the diverse needs and desires of the service populations. Program administrators also may see CD-PAS programs as a way to reduce the administrative overhead costs associated with the provision of traditional agency- based PAS and to achieve overall budget savings and efficiencies by downsizing government through the privatization of government functions.

However, with increased consumer choice, autonomy and control come responsibilities arising from a myriad of state and federal statutes and regulations. States implementing CD-PAS programs must find a way to strike a satisfactory balance among a number of competing factors:

• the consumers' desire for CD-PAS and their varying abilities and desires for choice, autonomy, and control,
• states' duty to ensure that applicable federal and state tax and labor laws and regulations are followed and CD-PAS programs and funding are properly administered,
• states' desire not to be the employer of record of CD-PAS attendants, and
• states' duty to assure that the health and safety of all beneficiaries are safeguarded (Flanagan & Green, 1996; Doty et al., 1996; Sabatino & Litvak, 1995).

Using intermediary service organizations (ISO's), has proven to be an innovative way of helping states achieve the best balance among competing policy objectives (Flanagan & Green, 1996; Sabatino & Litvak, 1995; Flanagan, 1994).

How Intermediary Service Organizations Help the Stakeholders Achieve the Best Balance Between Competing Goals

As states have experimented with consumer-directed personal assistance services over recent years, they have discovered that such services can successfully be made available to consumers of varying desires and abilities for self-direction, provided that supports are available and tailored to the specific needs of consumers. A number of states have found that they can contract with a new provider type, the ISO, to provide the range of fiscal, administrative, and support services to enable consumers of varying desires and abilities to effectively manage their CD-PAS. In the same way that consumers now buy tax, accounting, and payroll services from such organizations as H&R Block and Paychex, Inc., consumers with disabilities and chronic conditions in many state and Medicaid-funded CD-PAS programs can now obtain the intermediary services they need to manage their own personal assistance services.

An ISO may act directly as the fiscal agent for a consumer. As the fiscal agent, its job is to calculate, withhold, and file Social Security (Federal Insurance Contribution Act, or FICA) and Medicare taxes, federal and state unemployment taxes (Federal Unemployment Insurance Act, or FUTA, and State Unemployment Insurance Act, or SUTA), and other statutory benefits (e.g., state disability insurance and workers compensation insurance) and produce and distribute attendant payroll checks. The ISO may also broker and administer attendant fringe benefits if available. On the other hand, the ISO may simply assist consumers by providing them with skills training on how to hire attendants, manage their employment taxes and payroll, and supervise attendant activities. An ISO may also provide additional supportive services, such as maintaining an attendant registry, conducting criminal background checks, assisting consumers with developing emergency backup service plans, performing consumer assessments, and providing self-advocacy, peer counseling, and case management. The main point to keep in mind is that there is no single set of services that an ISO must provide. Rather, intermediary services should be developed to reflect the needs and desires of the service population and selected by a consumer and his or her representative, when appropriate, on an as needed basis.

Recent research has identified six discrete models of ISO used by states in the study (Sabatino & Litvak, 1995; Flanagan, 1994). These are briefly described in the following:

Fiscal Conduit ISO. As the name implies, the role of this ISO largely consists of disbursing funds to consumers directly. The consumer is the employer of record and performs all administrative and supervisory work connected with employment of his or her attendant. This is the most cost efficient method of administering a CD-PAS program and provides consumers with the highest level of consumer direction. The model also requires only a minimal level of state program oversight.

IRS Employer-Agent. This is a government entity approved by the Internal Revenue Service under Revenue Procedure 80 - to act as a fiscal agent for consumers for the purpose of preparing and filing employer-related taxes (e.g., FICA, FUTA/SUTA). The consumer is the employer of record of the attendant. This ISO may also prepare and distribute payroll checks and process attendants' time sheets. This model provides consumers with a high level of consumer direction and reduces their administrative burden while achieving regulatory compliance.

Vendor Fiscal ISO. This ISO performs the same tasks as the IRS employer agent but is a private vendor under contract to the state. Not only does this model provide a high level of consumer direction and reduce the administrative burden for consumers, it also assures both the consumer and the state that regulatory compliance related to employment taxes is achieved. It also reinforces the fact that the consumer, rather than the state, is the employer of record.

Supportive ISO. This ISO model may provide supportive services to consumers, such as skills and self-advocacy training, assistance with criminal background checks, development of emergency backup service plans, and maintenance of an attendant registry that assists consumers in performing the employment-related administrative and supervisory tasks associated with their CD-PAS. Supportive services may be provided by a distinct vendor or through another ISO model offering a range of services (e.g., Agency with Choice or Spectrum ISO).

Agency with Choice. Under this ISO model, the agency is the employer of record of the PAS attendants and, therefore, is responsible for the administrative tasks associated with employment. However, consumers are considered the managing employers, responsible for selecting their attendants and managing the day-to-day activities of their attendants to the extent that they wish to do so. The ISO may also perform background checks, maintain an attendant registry, and provide skills and self- advocacy training for consumers and direct care skill training, as needed, for attendants.

Spectrum ISO. This operational model provides a full range of administrative and management services to consumers under one umbrella organization. It allows consumers to select the services that best suit their needs at any given time. Under this model, the consumer may or may not be the employer of record, but the consumer is considered the managing employer and is often responsible for selecting attendants and managing his/her day-today activities to the extent that the consumer wishes (see Figure 1). What ISO model(s) and intermediary services work best under what circumstances? What ISO model(s) enable states to serve the largest number of eligible consumers? What are the challenges and opportunities afforded by this new service modality? These are some of the questions an ASPE-sponsored study of 23 CD-PAS programs in 11 states sought to answer. The balance of this article describes the ASPE-sponsored study conducted by The MEDSTAT Group, presents key study findings, and discusses the major points key stakeholders should keep in mind when implementing consumer-directed programs using ISO's.

Figure 1

ISO Models Operationalized as a Spectrum ISO

	State Program Agency SPECTRUM ISO
Fiscal Conduit Services		Fiscal Intermediary Services	Agency with Choice Services
		Supportive Intermediary Services

The MEDSTAT Group Study

In 1995, the Division of Aging Long-Term Care Policy (DALTCP), Office of the Assistant Secretary for Planning and Evaluation (ASPE), U.S. Department of Health and Human Services, commissioned a study of the ways states were using ISO's to enhance the delivery of CD-PAS. The goals of the study were: (1) to find out how states were using ISO's to help consumers with disabilities and chronic conditions of all ages using CD-PAS fulfil their responsibilities as employers and (2) to provide the most concrete and practical advice possible to state program administrators and other interested parties through the creation of an informal information manual on CD- PAS and the use of ISO's.⁽¹⁾

Previous studies had shown that states were beginning to use ISO's to:

• increase access to CD-PAS to consumers with varying desire and ability,
• assist them in managing the employer- related responsibilities related to CD-PAS, and
• reduce the administrative burden related to CD-PAS.

This study built on earlier research by focusing special attention on the practical and legal challenges arising from the use of ISO's.

Twenty-three different CD-PAS programs in 11 states were studied and six ISO models were identified, as described earlier.⁽²⁾ Data was collected through interviews with key program administrators, ISO providers, elder and disability advocates, consumers, and attendants in each study state. Each CD- PAS program and ISO studied was profiled and key employment tax, labor law, and licensing (in particular, state nurse practice acts) issues arising from the use of these ISO's were identified. Analysis of issues which cut across all CD-PAS programs and ISO models resulted in the development of "best practice" recommendations for resolving these issues. In addition, the study team collected and reviewed written contracts used by the key stakeholders in the CD- PAS programs to determine their current use and best practices.

Findings from the Study

Matching Intermediary Services with Consumers' Desires and Abilities: The Need for Flexibility. The study team found that in choosing an appropriate ISO model for a CD-PAS program, state administrators need to focus on two principal characteristics: these are the desire and the ability of the consumer to perform the wide range of employer-related tasks associated with CD-PAS (see Figure II). In looking at the populations served by the different state programs, considerable variation was found in the consumers' desires and abilities to manage the employer-related tasks. The types and amounts of assistance offered by the different CD-PAS programs varied accordingly. For example, being the employer of record was important to many working age adult CD-PAS users, but it was viewed as less important by elders, persons with developmental disabilities, and their representatives. To such individuals, being the managing employer of their attendants and overseeing their daily activities was often more important than performing the payroll and tax functions.

The majority of consumers interviewed reported that it was very empowering for them to distribute their attendants' payroll checks after they had been prepared by the ISO. This reinforced the consumers' role as the manager of their attendant(s). However, many of the Medicaid-funded CD-PAS programs studied required the IRS Employer Agent or Vendor Fiscal ISO to distribute attendants' payroll checks directly to them.

The most successful CD-PAS programs were the ones that provided consumers of differing desires and abilities with a high level of consumer choice and direction and program flexibility related to the type and timing of delivery of PAS and the ability to select and manage their attendants.

Figure 2

Use of ISO Models by Level of Consumer Ability
and Desire to Manage CD-PAS Related Tasks

HI	IRS/ Fiscal ISO or Vendor Fiscal ISO with Supportive ISO Fiscal Conduit ISO with Supportive ISO Agency with Choice ISO with Various Levels of Support IRS/EA Fiscal ISO or Vendor Fiscal ISO with Supportive ISO
LO		HI

Meeting Legal Requirements: Identifying the Employer and Allocating the Employment- Related Tasks. The study team found that ISO's assisted states in meeting all of the legal and administrative requirements arising from the employment relationship. The Fiscal Conduit ISO, for example, worked best for consumers with high levels of both desire and ability to perform the employer-related tasks associated with CD-PAS, since only the most simple administrative services are offered (e.g., disbursement of funds, time sheet collection). Under this ISO model, the consumer achieves a maximum level of choice, autonomy, control, and program flexibility while being wholly responsible for the majority of administrative and management functions (including employment taxes) an employer must comply with. When the consumer is able and willing to discharge these responsibilities, all works well and the state may achieve some program efficiencies. However, even in such a population, employment tax compliance may not be perfect. If compliance with managing employment taxes is not uniformly achieved, the consumer and the state can be at risk of liability for the failure to pay employment taxes. This is so even though the state may assert that the consumer is the employer of record of his or her attendant(s) and he or she (not the state) is, therefore, legally responsible for complying with the tax laws. As a result, the Fiscal Conduit ISO model is best suited to a highly motivated and able consumer population.

To minimize the risk of noncompliance with employment tax and other federal and state regulatory requirements, some states directly assume the role of fiscal agent, managing the employment taxes (and state- specific disability and worker's compensation insurance, when appropriate) and payroll on behalf of the consumer. Consumers are the employer of record of their attendants and manage their day-to-day activities. Some states in the study chose to take on these legal and administrative tasks directly (e.g., the IRS Fiscal Agent ISO model); while others contracted with a vendor to perform these tasks (e.g., the Vendor Fiscal ISO model).

In the case of the IRS Fiscal Agent ISO and the Vendor Fiscal ISO models, the consumer is the employer of record and engages the ISO as his or her agent to ensure compliance with all applicable tax laws and regulations. However, it was found that even when a state contracted with an agency to be the legal employer of record of the attendant instead of the consumer, as in the case of the Agency with Choice ISO model, consumer choice, autonomy, control, and overall satisfaction could be maintained if the agency asserted a philosophy that reflected the basic goals of the independent living movement.

In sum, states that used ISO's to assist consumers with managing their CD-PAS were able to enhance and preserve consumers' choice, autonomy, and control related to their PAS while achieving the necessary compliance with critical tax and regulatory requirements in a timely and professional manner. The keys to success in implementing CD-PAS programs and ISO's that successfully meet the needs, desires, and abilities of consumers and result in full tax compliance lie in careful design and advance planning, educating all stakeholders regarding their roles and responsibilities, and drafting clear agreements reflecting the expectations and responsibilities of all parties to the employment relationship.

Even the Most Independent Consumer May Wish to Receive Some Support from Time to Time. Even though many consumers were willing and able to perform all employment-related tasks, the study team found that the most successful CD-PAS programs provided intermediary services at the request of consumers to enhance their management of their PAS. For example, a number of consumers expressed a desire to receive assistance in recruiting and screening prospective employees (including performing criminal record background checks). Consumers also expressed interest in receiving skills training in such areas as budgeting, employment tax and payroll preparation, and general management (in particular, training in employee discipline and discharge techniques). Perhaps the most frequently mentioned service need was for assistance with developing backup plans and obtaining relief attendants. Even the most independent person reported having difficulty at one time or another engaging attendants with short notice (e.g., when an attendant fails to report for work), at night, and on weekends and holidays. Having access to a critical number of key support services when consumers needed them most made good programs even better and greatly increased the consumers' ability to effectively manage their PAS and live successfully in the community.

Using ISO's: What You Need to Know

Important Conditions for States in Designing and Implementing CD-PAS Programs Using ISO's. States considering using ISO's to enhance the delivery of CD- PAS services to consumers with disabilities and chronic conditions of all ages must initially identify the needs of the service populations carefully in order to match the services and supports offered with the needs, abilities, and desires of consumers. After that, successful CD- PAS and ISO design and implementation depends on:

• choosing ISO's that are knowledgeable and able to comply with the myriad of federal and state tax, labor, health, and safety requirements affecting consumers and attendants; and
• choosing ISO's that are sensitive to disability issues and embrace the independent living movement's philosophy of autonomy and consumer direction.

Legal Considerations

The laws and regulations affecting personal care attendants are complex and evolving, but the trend that most commentators discern favors viewing PAS attendants as household employees, not independent contractors.⁽³⁾ As such, personal care attendants are someone's employees and their employer is responsible for preparing, withholding, and filing employment taxes required for such household employees.

Some states have simply assumed that PAS attendants are independent contractors and are therefore on their own when tax time comes. Others have come to the conclusion that attendants are indeed employees, but they expect the consumer to do all the employer-related work, because the consumer is the employer of record. While it is appropriate and even desirable for the state to designate the consumer as the employer of record, the study team found that it is unrealistic to assume that in all cases the consumer is able or willing to assume responsibility for all employer tasks. A CD-PAS program that uses an ISO (in particular, a Spectrum ISO) recognizes the varying levels of consumer skills and desires and offers a range of services and supports.

States considering implementing CD-PAS programs with ISO's, and even states with CD-PAS programs already using ISO's, must, at a minimum, be familiar with federal tax and labor law requirements (and their state cognates) affecting domestic employees. This means learning about FICA, FUTA, SUTA, OSHA, and the minimum wage and overtime laws contained in the federal Fair Labor Standards Act (FLSA). There may also be tax, licensing, and labor laws in individual states that have an impact on domestic employees. Whether a fiscal agent assumes the responsibility for fulfilling these requirements on behalf of a consumer (as in the case of the IRS Employer Agent or Vendor Fiscal ISO) or expects the consumers to fulfill them, the point to remember is that compliance is someone's responsibility. Early recognition of the service population's needs and issues and good CD-PAS program and ISO design and development are essential.

Philosophy of the ISO

No matter whether the ISO is a full-service entity (e.g., an Agency with Choice or a Spectrum ISO), or simply provides tax and payroll services (e.g., an IRS Employer Agent or Vendor Fiscal ISO), the key to success for an ISO is its philosophy towards serving persons with disabilities and chronic conditions of all ages, in particular its commitment to the independent living philosophy. A fundamental premise of this philosophy is that persons with disabilities are self- directed consumers of services capable of managing their lives and that persons with disabilities and chronic conditions are "handicapped" primarily by barriers in their environments (in particular the absence of PAS), rather than by their disabilities (DeJong, et al., 1992). Even when many administrative and payroll tasks are performed by the ISO, such as in the case of the Agency with Choice ISO, the key is the level of involvement consumers have in the selection and management of their attendants. Agencies whose activities and orientation most closely conform to the goals of the independent living philosophy were most likely to achieve high levels of consumer satisfaction no matter which ISO model is used. Thus, contracts between states and ISO's should include performance standards that can be used to evaluate not only an ISO's administrative activities but also its commitment to consumer-directed principles.

Important Considerations for Consumers and Advocates. Consumers and advocates should realize that there are many ways to integrate ISO services into consumer-directed programs, just as there is much diversity in consumers' needs, desires, and abilities. Because one size does not fit all, consumers are best served by CD-PAS programs that maximize not only autonomy and control, but choice and flexibility. A good consumer-directed program uses an ISO that provides a wide choice of service and support options.

One of the most important findings from the study is that the needs and abilities of consumers vary not only over their lifetimes, but also over much shorter spans. For example, some consumers may choose to hire an independent PAS attendant during the week when it is imperative to receive their PAS early so that they can arrive to work, school, or other appointments in the community on time. However, on weekends, it may be more difficult to recruit and retain independent attendants and the consumer may have more flexibility over his or her schedule. Under these circumstances, the consumer may choose to purchase his or her PAS from an agency (or optimally an Agency with Choice ISO). By the same token, some consumers are eager to take on all of the employer-related tasks when they enter a CD-PAS program. However, later they find that their need/desire for support services has increased (e.g., life just gets busy). It is in these situations that consumers may wish to receive additional support services to assist them in managing their CD-PAS.

Can consumers receive support services and still remain independent and manage their CD-PAS to their satisfaction? To cite only one example from the study, an Agency with Choice ISO was the employer of record of the personal care attendants for over 400 consumers with disabilities. The ISO was the employer of record for consumers' attendants and managed all the paperwork related to hiring and employer-related tax and payroll tasks, including the brokering of benefits and legal tasks related to the attendants. Yet, when asked who was the employer of their attendants, consumers unanimously responded that they themselves were the employers of their attendants. This incorrect but positive response was due largely to the fact that these consumers managed those aspects of the employer-employee relationship that most mattered to them: choosing the services they needed and how and when they are delivered; selecting, training, and discharging their attendants; and reviewing and signing attendant time sheets and distributing attendant paychecks on a weekly basis.

To ensure that all persons with disabilities and chronic conditions who need PAS and wish to direct their services have access to CD-PAS programs, consumers and advocates should get involved in all aspects of the design and implementation of CD-PAS programs and ISO's. A key issue to be stressed with state program administrators is the ongoing need for the full range of intermediary services and the flexibility to choose only the services that are most needed.

This study indicates that the ongoing emphasis of the basic tenets of the independent living philosophy, together with the current trend in public health policy towards consumer empowerment and responsibility, makes this an auspicious time to use this new service modality. Thoughtfully implemented, ISO's expand the availability of consumer- directed personal assistance programs to persons with disabilities and chronic conditions of all ages.

Notes

1. Flanagan, S.A., & Green, P.S. (1996). Consumer-Directed Personal Assistance Services: Key Operational Issues for States CD-PAS Programs Using Intermediary Service Organizations. Copies of this report and appendices may be obtained by telephoning Tammy Bailey at ASPE at (202) 401-7733 or may be ordered through the ASPE internet site: www.aspe.os.dhs.gov.

2. States included in the study were Georgia, Idaho, Massachusetts, Maine, Michigan, Missouri, New Hampshire, New York, Pennsylvania, Virginia, and Washington.

3. See, for example, O'Neil, C., & Nelsestuen, L. (1993). Distinguishing independent contractors from employees. Florida Bar Journal, 67(3): 47-51.

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