All individuals, regardless of their impairments, can be successful in directing their services with the proper supports. People with serious illnesses and those with cognitive impairment--including impairment due to dementia, stroke, traumatic brain injury, and developmental disabilities--are capable of expressing preferences, but may need assistance to manage their services and budget. Most participant direction programs permit participants to designate a representative to assist them in these tasks. Representatives can ensure that participants preferences are known and respected and can manage tasks that participants would perform if they were able.
Some programs allow participants to use representatives without formally designating them as such, but have criteria that individuals must meet to be a representative, such as demonstrating a strong commitment to the participants well-being and being interested in and able to carry out program responsibilities and requirements.56 Although formal designation requires individuals to complete a form acknowledging acceptance of the duties and responsibilities of a representative, there is no legal transfer of authority or responsibility with respect to personal decision making or financial matters from the participant to the representative (as would be the case if an individual were to grant power-of-attorney or a court were to appoint a guardian.)
Program requirements for person-centered planning also apply to representatives, who must re-present the best interests of participants and ascertain and act in accordance with their preferences--unless they are impractical.57
The use of a representative under the §1915(j) authority is at the option of the state. This authority provides that representatives include (1) a minor childs parent or guardian; (2) an individual recognized under state law to act on behalf of an incapacitated adult; (3) a state-mandated representative, after approval by CMS of the state criteria, if the participant has demonstrated, after additional counseling, information, training, or assistance, the inability to self-direct personal assistance services.58
The statutory language of §1915(i) gives states the option to allow an individual or the individuals representative to elect to receive self-directed HCBS.59 An issue intrinsic to the use of representatives is avoiding a conflict of interest. Most programs that allow representatives generally do not permit them to be paid either as workers or for serving as representatives. However, exceptions can be made under extraordinary circumstances (e.g., lack of workers in isolated areas or the inability of workers to understand individuals with speech impairments). The final rule for §1915(j) stipulates that a person acting as a representative for a participant directing their personal assistance services is prohibited from acting as a provider of such services.60 The HCBS waiver application (version 3.5) instructions provide guidance on the use of representatives. (See the Resources section of this chapter for a link to the application.)