• The CDPAP is a long-term home-care program that enables the service recipients to receive Personal Assistance Services free of the constraints that would otherwise be imposed upon them by a more formal health care environment.
• The CDPAP can enable a Consumer to direct their Personal Assistant in the provision of a wide range of services that can include basic housekeeping, personal care or high level nursing services.
• The CDPAP may have various funding sources. The funding can be directed to the program through the traditional Medicaid entitlement program or through a Medicaid waiver program or through a grant or through some other third party payer.
• The role of the CDPAP Provider may vary according to the desires of the local political community, the flow of the funds, and the level of Consumer responsibility.

Given the above definition, I have developed the following list of fundamentals as they apply to each of the involved parties, Consumers, Personal Assistants, CDPAP Providers and Regulators. It should be noted that although some CDPAP models may provide services beyond Personal Assistance, such as the financing of structural modifications or the provision of other necessary services, I have limited the scope of this paper to this central and unifying core element.

• Consumers should be able to access the program regardless of their level of disability, age, or education; provided they have the desire and ability to manage the CDPAP responsibilities.
• Consumers who do not have the independent ability to manage the CDPAP should be able to use Surrogates. For a Surrogate to effectively manage the program’s responsibilities they should be closely connected to the Consumer, either through friendship, family or a professional third party supervisory relationship, and be willing to physically supervise the Personal Assistance Services on a daily basis.
• Access to the program should not be automatic. Given the risks and responsibilities that are inherent in the CDPAP, every Consumer with or without a Surrogate must be able to demonstrate, either in writing or orally, that they clearly understand the responsibilities they are accepting.
• In each program design, the Consumer has an essential role in the service delivery process. In the CDPAP for a Consumer to receive uninterrupted services the Consumer must select, hire, train, supervise, schedule and if necessary terminate their Personal Assistant.
• Consumers should always plan ahead, Personal Assistants will leave, tasks will change and emergencies will happen. For a Consumer to successfully participate in a CDPAP each Consumer or Surrogate should always maintain and continually update a reasonable plan to address the problems that will ultimately arise.

• When a Personal Assistant accepts employment from the Consumer, they should recognize the Consumer as their employer who will determine the tasks, and provide the necessary orientation, training and supervision.
• Given the unique nature of the Consumer / Personal Assistant relationship the Personal Assistant is an essential component in this service delivery system. For a Personal Assistant to be an effective member of this relationship they must display a high level of commitment, flexibility and dedication to the Consumer and the Consumer’s objectives of personal independence and empowerment.

• CDPAP Providers should design systems that are both user friendly and Consumer empowering, to address the requirements imposed upon them by their program’s design and by Federal, State and Local Regulators. Systems should be designed realizing that Consumers will approach the program's requirements from vastly different levels of experience and education. Systems should also be designed with a level of flexibility that will permit Consumers to rapidly hire emergency Personal Assistants when needed.
• To insure that the CDPAP Provider is operating in a manner that consistently empowers Consumers, Consumers should have a majority presence on the program’s Board of Directors. In addition to the usual requirements of any Board member, the Consumers on a CDPAP Board have a much more important task because they are the yardsticks against which each of the program’s systems and policies are measured. As Consumer / Board members, who function within the structure of the program’s policies, they are in the best position to identify problems and to keep the program focused on it proper target.
• To permit the program to empower Consumers, the program should avoid using any system that bypasses the Consumer, even if the system would be technologically superior or administratively easier. The CDPAP Provider should always keep the Consumer actively involved in the enrollment, time sheet data collection and payroll distribution processes. This involvement significantly enhances the Consumer’s sense of authority over the Personal Assistant management process, even if the program’s design makes this involvement technically symbolic.
• The CDPAP Providers should offer as much assistance as their program design and budget will permit. This assistance can include, Consumer counseling and orientation, recruitment assistance, the flexibility to pay trainees, and the provision of a competitive wage and employee benefit to enhance the Consumers ability to recruit and retain Personal Assistants.
• Regardless of the level of assistance, the CDPAP Provider should always maintain a clear line of separation between the provider’s role and the role of the Consumer. This separation will afford the CDPAP a reasonable liability position and prevent any interference with the Consumer’s goal of empowerment.
• Even though the CDPAP Provider may be motivated by a variety of considerations from advocacy to control, the provider should avoid the direct training or orientation of the Personal Assistant, or the development of any program that requires Consumers to select from a list of approved or prescreened Personal Assistants. For Consumers to be truly empowered the provider must respect each of the responsibilities that the Consumer has accepted. The CDPAP Provider should insure that any procedures they adopt do not overshadow or negate any of the Consumer's prerogatives.
• Although the provider may have to impose employment standards and limitations on the Personal Assistant enrollment process, the provider should always refrain from complicating the enrollment process by imposing any standards that are not specifically imposed upon it by the program’s design or by outside regulators.
• Implicit in any administrative situation is the provider’s obligation to monitor Consumers to insure that they continue to be appropriate for the CDPAP. In exercising this responsibility the provider should take the utmost care to avoid being overly intrusive into the Consumer / Personal Assistant relationship, and be respectful of the fact that each Consumers will solve the problems presented by their need for home care services differently.
• Within the monitoring function the CDPAP Provider should avoid situations which may give the appearance that the provider is supervising the Personal Assistant. To avoid this type of conflict it is better to seek either independent or third party reviewers, preferably those selected by the Consumer, to assist with the this necessary function.
• If the CDPAP Provider discovers a situation that could either be considered abusive or dangerous, it is the responsibility of the provider to seek a solution with the active participation of the Consumer, before it attempts to resolve the problem using outside resources.

• It is the regulator’s responsibility to make the CDPAP available and accessible within their community.
• Regulators should refrain from developing authorizations that create a confusing mix of conventional and Consumer Directed Services. Mixed services should only be considered if the services and the responsibilities can be clearly separated.
• Regulators should maximize their efforts to move the CDPAP beyond the Medicaid program, and encourage the development of systems that utilize Medicare and other third party payers.
• Regulators should encourage the expansion of the CDPAP, to benefit the program and to maximize the program's ability to reduce costs, by enabling Personal Assistants to provide a wide range of services including "high-level" home care services. Although some States have opted to expand the role of the Personal Assistant by developing a system of Nurse Delegation, I believe that it is preferable to modify the Family Designee section of the State’s Nurse Practice Act. The effort to delegate nursing duties has evolved into a benefit program for hospitals, insurance companies and other large employers that seek to replace Nurses with less costly employees. While the effort to modify the Family Designee section has allowed the States to empower appropriate Consumers and to create a focused system designed to assist Self-Directing Consumers of Personal Assistance Services.

Edward Litcher

March 2003