What is Self-Direction?
Self-direction (also called participant-direction, consumer-direction, or self-determination) is a model of service delivery that empowers individuals with disabilities and their families to have greater control over their services and supports. In self-directed programs, participants and their families decide which services they receive, who provides them, and how they are delivered, rather than making these decisions primarily by service agencies or case managers.
Core Principles of Self-Direction
- Autonomy: Individuals direct their own services to the maximum extent possible
- Choice: Participants select the services and supports that best meet their needs
- Control: Decision-making authority rests with the individual and their chosen representatives
- Flexibility: Services can be customized to address unique circumstances and preferences
- Person-Centered: Focus remains on the individual’s goals, strengths, and needs
- Responsibility: Participants assume greater accountability for service outcomes
Benefits of Self-Direction
- Increased Satisfaction: Studies show higher satisfaction when people control their own services
- Better Outcomes: More personalized services lead to improved quality of life measures
- Workforce Expansion: Ability to hire family, friends, and neighbors increases available caregivers
- Cost-Effectiveness: Often results in more efficient use of allocated funds
- Empowerment: Builds confidence, self-advocacy skills, and independence
- Stability: Can provide more consistent support with reduced staff turnover
Agency With Choice Model
Agency With Choice (AWC) is a co-employment model of self-direction that balances participant control with agency support. In this model, a provider agency serves as the employer of record for direct support workers, handling administrative responsibilities, while the participant or family acts as the managing employer, making decisions about who to hire, what services they provide, and how and when those services are delivered.
How AWC Differs from Other Self-Direction Models
- Fiscal/Employer Agent Model: In this alternative model, participants are the legal employers, with a Financial Management Service (FMS) handling payroll and tax responsibilities
- Traditional Agency Model: In traditional services, agencies maintain control over all aspects of service delivery, including worker selection and scheduling
- Shared Responsibilities: AWC creates a partnership between the agency and the participant rather than placing all responsibilities on either party
Roles and Responsibilities
Agency Responsibilities as Employer of Record
- Recruitment Support: Assisting with finding potential staff when needed
- Employment Processing: Managing background checks, credentials verification, and onboarding
- Payroll Administration: Processing timesheets, issuing paychecks, and handling tax withholding
- Benefits Management: Providing access to health insurance, workers’ compensation, and other benefits
- Regulatory Compliance: Ensuring all services meet state and federal requirements
- Quality Assurance: Monitoring service quality and addressing concerns
- Training Support: Providing or facilitating required training for workers
- Liability Coverage: Maintaining appropriate insurance for workers and services
Participant Responsibilities as Managing Employer
- Staff Selection: Choosing their preferred direct support workers
- Staff Training: Providing orientation to personal preferences and needs
- Staff Management: Directing day-to-day work activities and tasks
- Schedule Determination: Setting hours and times for service delivery
- Performance Monitoring: Providing feedback and addressing performance issues
- Service Planning: Identifying goals and desired outcomes for services
- Budget Management: Making decisions about how allocated funds are used within program guidelines
Eligible Support Workers
Non-Legally Responsible Relatives: Family members who are not legally responsible for the participant (varies by state)
Friends and Neighbors: People from the participant’s existing social network
Traditional Caregivers: Professional support workers from the community
Exclusions: Most programs exclude spouses and parents of minor children from being paid caregivers
Service Options Under Self-Direction
Types of Services Typically Available for Self-Direction
- Personal Care Assistance: Help with activities of daily living (bathing, dressing,
grooming, etc.) - Homemaker Services: Assistance with household tasks and chores
- Companion Services: Supervision and socialization support
- Respite Care: Relief for primary unpaid caregivers
- Transportation: Support to access community activities and appointments
- Employment Supports: Job coaching and workplace assistance
- Community Integration: Support for participation in community activities
- Assistive Technology: Devices and modifications to increase independence
- Home Modifications: Environmental adaptations for accessibility and safety
- Specialized Therapies: Services such as massage therapy, art therapy, or music therapy that may not be covered under traditional service models
Customizing Services to Individual Needs
- Individualized Service Plans: Development of personalized goals and strategies
- Creative Service Design: Thinking beyond traditional service models to meet unique needs
- Combining Formal and Informal Supports: Integrating paid services with natural supports
- Activity-Based Services: Structuring supports around meaningful activities and interests
- Flexible Scheduling: Arranging services when they are most needed or beneficial
- Cultural Considerations: Incorporating culturally relevant practices and preferences
Financial Management in Self-Direction
Understanding Individual Budgets
- Budget Determination: How service authorization amounts are calculated
- Budget Authority: Participant control over how funds are allocated across services
- Line-Item Budgeting: Designating specific amounts for different service categories
- Budget Flexibility: Options for modifying allocations as needs change
- Spending Limitations: Restrictions on allowable purchases and services
- Budget Monitoring: Tracking expenditures to avoid over- or under-utilization
Rate Setting and Payment Processes
- Worker Compensation: How pay rates are determined for direct support workers
- Timesheet Submission: Procedures for documenting and submitting service hours
- Payment Schedules: Frequency and timing of payments to workers
- Electronic Visit Verification (EVV): Requirements for verifying service delivery
- Overtime Considerations: Policies regarding overtime payment
- Emergency Backup Planning: Financial provisions for emergencies or worker absences
Cost-Saving Strategies
- Preventive Approaches: Addressing needs before they escalate
- Natural Support Enhancement: Developing non-paid support networks
- Technology Utilization: Using assistive technology to reduce staff hours
- Group Services: Sharing supports with others when appropriate
- Leveraging Community Resources: Accessing free or low-cost community options
- Prioritizing High-Impact Services: Focusing on services with the greatest benefit
Quality Management in Self-Direction
Ensuring Service Quality
- Participant-Defined Quality: Prioritizing what quality means to the individual
- Outcome Measurement: Tracking progress toward personal goals
- Satisfaction Assessment: Regular evaluation of participant satisfaction
- Risk Management: Balancing freedom of choice with health and safety
- Incident Reporting: Processes for addressing and documenting concerns
- Continuous Improvement: Systems for ongoing enhancement of services
Monitoring and Oversight
- Participant Monitoring: The individual’s role in overseeing their services
- Agency Quality Reviews: Provider agency oversight responsibilities
- Case Management Supervision: Role of support coordinators or case managers
- State Program Oversight: Government monitoring and compliance activities
- Medicaid Fraud Prevention: Safeguards against misuse of program funds
- Complaint Resolution: Processes for addressing service concerns
Supporting Successful Self-Direction
- Skills Assessment: Identifying strengths and areas needing support
- Training for Participants: Education on employer responsibilities
- Support Brokerage: Assistance with implementing self-direction
- Peer Mentoring: Guidance from experienced self-directing participants
- Backup Planning: Ensuring continuity of services during emergencies
- Ongoing Consultation: Access to expertise for complex situations
Eligibility and Enrollment
Who Can Participate in Self-Direction?
- Disability Criteria: Qualifying conditions and assessment requirements
- Functional Needs: Level of care or support needs necessary for eligibility
- Age Requirements: Availability for different age groups
- Financial Eligibility: Income and asset considerations for publicly funded programs
- Capacity Considerations: Ability to direct services independently or with support
- Geographical Limitations: Availability in different regions or service areas
Funding Sources for Self-Directed Services
- Medicaid Home and Community-Based Services (HCBS) Waivers: State-specific waiver programs
- Medicaid State Plan Services: Self-direction options within regular Medicaid benefits
- Veteran-Directed Care Program: Self-direction for eligible veterans
- State-Funded Programs: Non-Medicaid programs supporting self-direction
- Private Insurance: Emerging self-direction options in some insurance plans
- Private Pay: Self-funded service arrangements
Enrollment Process
- Initial Assessment: Evaluation of needs and eligibility
- Person-Centered Planning: Development of individualized service plan
- Budget Development: Determination of available funding
- Program Orientation: Education about program requirements and processes
- Support Worker Recruitment: Finding and selecting direct care staff
- Service Implementation: Beginning service delivery
- Ongoing Support: Continued assistance throughout participation
Self-Direction for Specific Populations
Self-Direction for Individuals with Intellectual and Developmental Disabilities
- Benefits for This Population: How self-direction addresses specific IDD needs
- Support Considerations: Types of assistance that may be needed to self-direct
- Success Stories: Examples of positive outcomes for people with IDD
- Family Involvement: Common roles of family members in supporting self-direction
- Community Integration Focus: Using self-direction to promote inclusion
- Life Transitions: Supporting major life changes through self-directed services
Self-Direction for Older Adults
- Aging in Place: Supporting continued independence at home
- Caregiver Relationships: Balancing formal and informal supports
- Health Management: Coordinating self-directed care with medical needs
- End-of-Life Considerations: Self-direction in palliative and hospice care
- Cognitive Impairment: Options for supported decision-making
- Intergenerational Approaches: Involving multiple generations in care planning
Glossary of Terms
- Budget Authority: The participant’s control over a specified funding amount and how it is allocated across approved services and supports.
- Circle of Support: A group of people who come together to support an individual in achieving their goals and addressing their needs, typically including both paid and unpaid supporters.
- Common Law Employer: The individual or representative who has legal responsibility for hiring, managing, and if necessary, dismissing workers.
- Electronic Visit Verification (EVV): A system used to verify that home care services were actually delivered, typically recording the time, location, type of service, and other information.
- Employer of Record: The entity legally responsible for paying employees, including withholding and paying employment taxes, insurance, and other employer responsibilities.
- Financial Management Services (FMS): Services that help participants manage their service budgets, including processing payroll and handling tax responsibilities.
- Individual Budget: The total dollar value of services and supports available to a participant in a self-directed program.
- Managing Employer: In Agency With Choice, the individual who directs worker activities but does not have full employer responsibilities.
- Medicaid Home and Community-Based Services (HCBS) Waivers: Programs that allow states to provide services in home and community settings rather than institutional settings.
- Natural Supports: Assistance provided by family, friends, neighbors, and community members that occurs naturally without formal service system involvement.
- Person-Centered Planning: An approach to service planning that focuses on the individual’s preferences, needs, and goals rather than fitting them into existing service offerings.
- Representative: A person chosen by the participant to assist with or perform self-direction responsibilities on their behalf.
- Self-Determination: The belief that individuals should have control over their own lives and the resources that support them.
- Service Plan: A written document that outlines the services and supports a participant will receive, including type, amount, frequency, and duration.
- Support Broker/Counselor: A professional who assists participants with implementing self-directed services, including developing service plans and hiring workers.