Participant direction service models use the needs assessment and service planning processes as fundamental activities to safeguard participants health and welfare, and to ensure that the services and supports provided enable participants to meet their individual community living goals. The participant direction model differs from professional-directed service models by affirming that the participant is the center of--and leads--the service planning process. Person-centered planning (PCP) is a critical component of participant-directed service planning, which enables and helps the individual to identify and access a personalized mix of paid and non-paid services and supports. While PCP methods used to be associated only with service planning for persons with developmental disabilities, these methods are now employed for individuals with any type of disability, and CMS encourages and supports the use of person/family-centered planning methods in service plan development.
With the exception of home health services, Medicaid policy does not dictate that service plans must be prepared by medical, clinical, or case management professionals. Whether for waiver services authorized in a plan of care or personal care services under the optional State Plan benefit, states have considerable latitude with regard to empowering the individual to manage authorized services. Under the Personal Care option, for example, many states already allow participants to determine when authorized service hours are to be furnished and to alter the schedule to meet their needs.
In an HCBS waiver program, states may also permit participants to manage the service schedule or alter the mix of authorized services to meet their changing needs without having to develop an entirely new service plan. However, the statutory requirement that services be provided pursuant to a written plan of care must continue to be met.
Federal law requires that the services individuals receive through an HCBS waiver program be provided pursuant to a plan of care.54 Neither Federal law nor regulations specify the process by which this plan of care is to be developed. The plan of care must meet the requirements spelled out in the State Medicaid Manual and the Technical Guide for HCBS waivers, as well as requirements included in the states approved HCBS waiver request. Effective service plan development processes are essential to ensure that waiver participants will receive the services and supports they need and want in order to successfully live and thrive in the community. States must specify in their waiver application how the participant-centered plan will be developed as well as how the state will monitor the service planning process to ensure that it is person centered.
At one time, Federal regulations dictated that the §1905(a) optional State Plan Personal Care benefit be authorized by a physician and supervised by nursing personnel. In the Omnibus Reconciliation Act of 1993, states were specifically authorized to use alternative service authorization methods, including those that do not require the involvement of medical personnel. This policy change enables states to adopt alternative approaches to personal care service planning. A common approach is to delegate this task to case managers who are responsible for assessing eligibility and authorizing services.55
Section 1915(i) highlights service planning as a fundamental component of participant direction, intended to both safeguard health and welfare, as well as ensure meaningful involvement of participants in identifying and selecting the services and supports they need. Section 1915(j)(5)(B) emphasizes the assessment and service planning process by requiring an assessment of the participants needs, strengths, and preferences for personal assistance services.
Use of Representatives
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.)
Individualized Backup Plans
A key component of person-centered service planning is a risk assessment process to identify issues or situations that can jeopardize health and welfare and to develop an individualized backup plan that specifies actions to prevent them or address them if they occur. For example, a backup plan should designate individuals to be called--and in which order--if workers do not arrive when scheduled. Backup plans should also address methods for handling any critical incidents that may occur, such as a serious injury, abuse, neglect, or exploitation.
Every participant receiving home and community services--whether through the traditional agency-delivered service system or a participant direction program--should be educated about the availability of backup resources and have a backup plan individually tailored to their needs and preferences.
Appendix D-1(e) of the HCBS waiver application (version 3.5) requires states to specify how potential risks to participants will be assessed during the development of the service plan and how strategies to mitigate risk will be incorporated into the service plan, subject to participants needs and preferences. In addition, states must describe how the service plan development process will address the need for backup plans and the arrangements that are used for backup must be included. These requirements apply to both traditional and participant direction programs.
Section 1915(j) regulations also emphasize the importance of developing backup plans. Identifying actual and potential risks--and determining how they will be handled--should be accomplished through discussion and negotiation among persons involved in the service planning process.
If the backup plan includes calling individuals who are willing and able to work at short notice, such as neighbors, all of their payroll paperwork must be on file in advance. Similarly, if it includes calling a traditional service agency, the agency should be informed that they are listed on a participants backup plan and should be provided with information about the participants needs.
Typically, backup plans include the names and contact information of individuals or entities to be called in a specific order; for example, family and friends may be called first, and a counselor or case manager called only if family and friends are unable to provide backup. Some states have developed an Emergency Backup Person Designation Form to identify individuals as emergency backup personnel; individuals designated are required to sign the form demonstrating their willingness to serve in this capacity. The effectiveness of backup plans should be tested periodically and changes made as needed.
Building Flexibility into the Service Plan While Ensuring Equitable Budgets
In programs that allow participants to exercise budget authority, purchases must be clearly linked to an assessed need that is identified in the service plan.61 Typically, purchases either increase independence or address a personal care need. While some programs only allow participants to purchase personal care services, others allow them to purchase a range of services, including skilled nursing, rehabilitative therapies, and supported employment services.
The flexibility afforded to participants to purchase goods and services varies by program. Programs may require pre-approval of non-traditional services, such as purchase and maintenance of a service dog, or they may develop a list of allowable items and a prior authorization process to approve the purchase of items not on the list. Other programs allow participants significant flexibility and consider any purchase that fosters community inclusion as allowable.
States also can build flexibility into the service menu and individual service plans by combining certain services (e.g., personal care, homemaker, respite, non-medical transportation, and companion services) into one service category in the waiver application. This could allow participants to use their budgets to purchase the specific services they need to address their needs without having to formally alter the service plan.
Programs that allow participants broad discretion to purchase goods and services--within Federal parameters--must ensure that financial accountability is maintained through the application of consistent methods to determine both needs and allowable purchases to meet those needs. States must demonstrate to CMS that statewide procedures are in place to assess need and ensure access to services, even in states where counties or local entities play a strong role in the operation of the waiver.
Uniform use of a standardized assessment process--and training to ensure its consistent use--will enable states to ensure equitable funding of individual budgets and help them to determine whether budgets are being calculated accurately using a consistent method. It is also important that states implement procedures to ensure that funds go to enrolled or otherwise eligible providers.
The methods states use to perform the assessment vary greatly and often differ within a state according to the population being served. In programs serving persons with developmental disabilities, many states use standardized assessment processes and instruments that are nationally tested and accredited, such as the Supports Intensity Scale. In programs serving elderly persons and younger adults with physical disabilities, assessment instruments are generally state specific, but typically assess ADLs and IADLs, as well as nursing needs, cognitive impairment, and behavioral issues.62
A few states use the comprehensive Minimum Data SetHome Care assessment instrument, which assesses multiple factors that determine the need for services, including cognition; vision; hearing and communication; mood/behavior; social functioning; informal support services; physical functioning (including IADLs and ADLs); continence; medical conditions and medications; and the living environment.63
Employing Family Members
All of the participant direction Medicaid authorities allow participants to hire friends and relatives to provide personal care services. States also have the option under the HCBS waiver authority, and §1915(i) and §1915(j), to allow participants to hire legally responsible relatives (i.e., spouses, and parents and legal guardians of minor children) within certain parameters.64 Generally, to be a paid personal care provider, a legally responsible relative has to be providing services that a spouse or parent would not be providing for a non-disabled spouse or minor child; for example, feeding a 15-year-old child or bathing a spouse. Medicaid prohibits the hiring of legally responsible relatives in participant direction programs under the Medicaid State Plan Personal Care benefit.
Non-Personal Care Services
Relatives--including legally responsible relatives--may be hired to provide non-personal care services when they are difficult to obtain from other sources. The rules that pertain to paying relatives to provide non-personal care services are not substantially different from the rules for obtaining such services from other sources. The relative must meet whatever provider qualifications the state may have established and charge no more than any other provider. For example, if a minor child has extensive medical needs and requires skilled nursing services, a parent who is a licensed nurse could provide the service as long as she or he meets the states provider qualifications.
Within the broad parameters of Federal policy, it is up to states to define the particular circumstances under which relatives will be paid to furnish services to participants. States can take various factors into account, including the availability of other sources for the same services, costs of family member services versus costs of purchasing such services from conventional sources, and specific circumstances with respect to participants. See Box for Minnesotas provisions regarding payment of family members.
Minnesotas Family Payment Policies65
Minnesota does not allow legally responsible relatives (i.e., spouses or parents of minor children) to be reimbursed for personal care, which they are legally obligated to provide to a spouse or child.
Additional provisions are available under the consumer-directed community supports waiver service to allow spouses and parents of minor children to provide personal support services--within state-set limits in hours, rate of pay, and scope of tasks.
The State allows services provided by other relatives or friends to be reimbursed only if:
- they meet the qualifications for providers of care,
- the State has strict controls to ensure that payment is made to the relative or friend as providers only in return for specific services rendered, and
- adequate justification exists for the relative or friend to provide the service (e.g., lack of qualified providers in remote areas). Medicaid payment may be made to qualified parents of minor children or to spouses for extraordinary services requiring specialized nursing skills that they are not legally obligated to provide.