Self-Directed Care vs. Agency-Based Supports After Brain Injury: Understanding the Risks, Responsibilities, and Need for Reliable Support
The Supported Living Group | ABI Knowledge Center
For individuals living with an acquired brain injury (ABI), the ability to remain at home, make personal decisions, and participate in the community can be central to maintaining independence and quality of life. Achieving these goals often requires ongoing assistance with daily activities, household responsibilities, community access, employment, and other aspects of everyday living.
For many individuals, Medicaid-funded home- and community-based services provide an alternative to institutional care. Within these programs, different service-delivery models may allow individuals to receive support through a self-directed arrangement or an agency-based provider.
Both models are intended to help people access the assistance they need. However, they place different responsibilities on the individual, their family, and the organization or people delivering services.
For some brain injury survivors, self-directed care offers meaningful flexibility and greater control over staffing decisions. For others, the responsibilities associated with recruiting, hiring, training, scheduling, supervising, and replacing support workers can become difficult to manage, particularly when the injury affects memory, executive functioning, emotional regulation, problem-solving, or awareness of personal support needs.
These challenges raise an important question: When does the responsibility of managing care become an additional burden for the person who needs care?
Understanding the differences between self-directed and agency-based support is essential for individuals with ABI, their families, care coordinators, and professionals involved in developing long-term support plans.
1. Understanding the Two Models of Care
Self-directed and agency-based services can both support individuals in their homes and communities. The central difference is how responsibility for arranging and managing services is distributed.
What is self-directed care?
In a self-directed model, an individual may have greater authority over selecting and managing their direct support workers. Depending on the program, participants may recruit workers, participate in hiring decisions, establish schedules, direct day-to-day activities, and manage certain employment responsibilities.
Some programs provide a financial management service or intermediary to handle payroll, tax documentation, and other administrative functions. The precise arrangement depends on the program's rules.
Self-direction can offer important advantages. Individuals may be able to select workers who understand their preferences, communicate effectively, share compatible interests, and provide assistance in a way that respects personal routines.
For someone with ABI, the opportunity to choose familiar and trusted support workers may help preserve dignity, autonomy, and continuity in relationships.
However, self-direction does not necessarily mean that someone else assumes responsibility for identifying problems, ensuring appropriate staffing, or finding a replacement when a worker leaves. Even when administrative assistance is available, important responsibilities may remain with the participant or their representative.
What is agency-based care?
In an agency-based model, an organization assumes responsibility for arranging and overseeing the delivery of authorized services within its contractual and regulatory obligations.
Depending on the provider and program, this may include recruiting workers, coordinating schedules, matching staff with participants, arranging coverage, providing supervision, maintaining documentation, and responding to staffing concerns.
Agency-based services may also provide access to management personnel who can help address problems when a support arrangement becomes unstable.
The extent of these functions varies. Not every agency offers the same level of clinical oversight, staff training, backup coverage, or continuity planning. Families should therefore evaluate what an agency actually provides rather than assume that the agency model guarantees reliable care.
The key distinction is organizational responsibility. Under a well-managed agency model, the participant does not have to manage every aspect of the staffing arrangement independently.
2. Why Brain Injury Can Make Managing Support Workers More Difficult
One of the most important considerations when evaluating a care model is the relationship between a person's cognitive functioning and the responsibilities associated with managing services.
Acquired brain injury can affect different areas of cognition to varying degrees. Some individuals experience difficulties with memory, attention, processing speed, planning, organization, impulse control, emotional regulation, or problem-solving. Others may experience relatively subtle changes that become more apparent when daily responsibilities grow complex.
These difficulties do not automatically mean a person cannot direct their own services. Many individuals with ABI successfully manage significant responsibilities, particularly when they have appropriate accommodations and support.
However, the demands of self-direction should be evaluated against the individual's actual functional abilities rather than assumptions based on diagnosis alone.
Executive functioning and the demands of self-direction
Executive functioning refers to cognitive processes involved in planning, organizing, initiating tasks, monitoring performance, adapting to changes, and working toward goals.
Managing support workers may require an individual to:
Recognize when an existing support arrangement is no longer working.
Identify the type and amount of assistance needed.
Advertise for workers and evaluate applicants.
Communicate expectations clearly.
Organize interviews, schedules, and required documentation.
Monitor whether agreed-upon responsibilities are being completed.
Address conflicts or performance concerns.
Recognize when a worker's conduct or reliability creates a problem.
Develop a contingency plan when a worker becomes unavailable.
Initiate a replacement process and follow it through to completion.
Each task may be manageable in isolation. Together, they can create a demanding set of ongoing responsibilities.
For someone who experiences difficulty with initiation, organization, judgment, or adapting to unexpected changes, the challenge may not be understanding what needs to happen. It may be consistently carrying out the necessary steps, particularly during periods of stress.
This is one reason support planning should consider both the assistance a person receives and the administrative and interpersonal responsibilities they are expected to manage.
The research behind these concerns
A systematic review of community-based interventions for adults with long-term difficulties following acquired brain injury examined 49 controlled studies. The review identified considerable variation in intervention approaches, intensity, and outcomes, highlighting the need to recognize differences between individuals and avoid assuming that a single model will work equally well for everyone.
The authors did not establish that agency-based services are superior to self-directed care. However, the findings reinforce the importance of individualized assessment and attention to the particular difficulties affecting each person's daily functioning.
Peer-reviewed research: Hauger, S. L., et al. (2022). Community-Based Interventions After Acquired Brain Injury—A Systematic Review of Intervention Types and Their Effectiveness. Journal of Head Trauma Rehabilitation, 37(5), E355–E369.
For families and professionals, the practical implication is straightforward: the suitability of a care model should be evaluated in relation to the individual's needs, abilities, resources, and capacity to manage the arrangement over time.
3. The Hidden Work of Self-Directed Care
Self-directed care is sometimes described primarily in terms of choice and control. Those are important benefits, but they do not capture the full range of responsibilities that may accompany the model.
Recruiting, scheduling, supervising, and retaining support workers requires time, communication, organization, and ongoing problem-solving. When a staffing arrangement is functioning well, these responsibilities may be manageable. When it begins to break down, they can become significantly more demanding.
Consider an individual who has relied on the same direct support worker for an extended period. The worker knows the individual's routines, communication preferences, support needs, and warning signs of fatigue or distress.
If that worker leaves unexpectedly, the individual may need to begin the recruitment process again while continuing to manage everyday responsibilities.
Depending on the program, this may involve locating applicants, arranging interviews, completing employment requirements, coordinating onboarding, establishing a schedule, and ensuring the new worker understands the person's needs.
The individual may also need to continue managing household tasks, appointments, finances, or other activities while navigating this disruption.
For someone with cognitive difficulties, the combined demands can be substantial.
When administrative responsibility becomes a barrier
Several challenges can emerge:
Recruitment difficulties. Finding suitable workers can require repeated outreach, interviews, follow-up, and decision-making. The process may become particularly difficult when an individual has limited support from family or other trusted people.
Scheduling and coordination. Support arrangements can become complicated when workers have competing commitments, transportation problems, illness, or changing availability.
Performance management. Addressing lateness, missed shifts, boundary concerns, or incomplete tasks requires communication and the ability to recognize when intervention is necessary.
Replacement staffing. When a worker leaves, the participant may be responsible for initiating and coordinating the process needed to establish a new arrangement.
Administrative follow-through. Even when a financial management service handles payroll, the participant or representative may still need to provide information, coordinate employment requirements, or address staffing changes.
These are not reasons to dismiss self-direction. They are reasons to assess whether the individual has the resources and assistance necessary to manage it successfully.
A care model that offers substantial autonomy but does not provide enough support to manage its responsibilities may become increasingly difficult to sustain.
4. Staffing Instability and the Risk of Gaps in Support
One of the most serious concerns in any community-based care arrangement is what happens when a support worker becomes unavailable and no replacement is ready.
For individuals who require assistance with personal care, household activities, medication-related routines, community access, or other essential daily responsibilities, an interruption in staffing may have consequences beyond inconvenience.
Depending on the individual's needs, a staffing gap may mean missed appointments, difficulty obtaining groceries, disruption of routines, reduced access to community activities, or an inability to complete essential daily tasks safely.
The potential impact varies considerably. Some individuals can manage independently for a period of time, while others depend on consistent support to maintain their health, safety, and daily functioning.
Why continuity matters after ABI
Brain injury can make predictable routines and familiar support strategies particularly useful for some individuals.
A familiar worker may understand how to present information clearly, recognize signs of cognitive fatigue, allow additional processing time, or help the person complete a task without unnecessarily taking over.
When that relationship ends, the replacement worker may need time and guidance to learn the individual's preferences, support needs, and communication style.
A staffing change is therefore not simply a personnel issue. It can also be a transition that affects the individual's ability to use support effectively.
A well-managed agency may be better positioned to coordinate recruitment, communicate with incoming staff, and develop backup arrangements. However, this depends on the provider's actual staffing resources and operational practices. An agency experiencing its own workforce shortages may also struggle to maintain continuity.
What does research tell us about transitions?
A 2023 scoping review examined models for supporting transitions from hospital to home for people with acquired brain injury. It identified a range of approaches, including multidisciplinary home-based teams, designated coordinators, trained caregivers, discharge planning, and self-management programs.
Multidisciplinary home-based teams were among the most frequently described models. The authors did not find sufficient evidence to recommend nonprofessional or self-management approaches over professional rehabilitation services.
The review focused on transitions from hospital to home, rather than directly comparing Medicaid self-direction with agency-based personal support. Nevertheless, it demonstrates the importance of considering coordination, training, and continuity when designing support arrangements for people with ABI.
Peer-reviewed research: Rehabilitation Models That Support Transitions From Hospital to Home for People With Acquired Brain Injury (ABI): A Scoping Review (2023).
The broader lesson is that transitions require planning. A support arrangement should not be considered sustainable solely because it worked previously. It must also have a realistic plan for responding when circumstances change.
5. The Burden on Family Members and Informal Caregivers
When self-directed care becomes difficult to manage, family members may step in to fill the gaps.
A spouse may begin coordinating schedules. An adult child may spend evenings searching for replacement workers. A parent may monitor whether shifts are covered, contact program representatives, or help resolve conflicts between a participant and a support worker.
These contributions can be valuable, particularly when family involvement is welcomed by the individual. However, they can also create an unplanned transfer of responsibility from the formal service system to relatives.
The result may be a care arrangement that appears operational because family members are continually intervening behind the scenes.
This can be particularly difficult when relatives live far away, have employment or caregiving responsibilities of their own, or cannot respond quickly to an unexpected staffing problem.
Family involvement should not be confused with a sustainable support plan
Family members may be important partners in care, but they should not automatically be treated as an unlimited source of staffing coordination, crisis management, or administrative support.
A plan that depends on one relative repeatedly resolving staffing problems may be vulnerable if that person becomes unavailable.
This issue is especially relevant when the individual receiving services has difficulty recognizing the extent of their support needs or completing the steps necessary to restore services after a disruption.
A 2026 systematic review examined the information and support needs of family members after acquired brain injury. The review identified themes involving knowledge about ABI, difficult transitions, emotional and financial costs, support groups, and social connection. The authors highlighted gaps in information and ongoing support for families, particularly after the acute phase of care.
Peer-reviewed research: Andrews, C., et al. (2026). Understanding the Support and Information Needs of Family Members After Acquired Brain Injury: A Systematic Review.
The findings support a more coordinated, person-centered approach that recognizes the needs of both the individual with ABI and their family.
For families evaluating service arrangements, an important question is whether the model is genuinely sustainable or whether it works only because relatives are continually stepping in to manage problems.
6. Oversight, Accountability, and Recognizing When Something Is Wrong
A further consideration is how concerns are identified, documented, and addressed when the individual receiving services has difficulty monitoring the arrangement independently.
Support workers may have access to an individual's home, personal information, finances, routines, or other private aspects of life. A positive working relationship is important, but it should not eliminate the need for clear expectations, appropriate boundaries, and a process for addressing concerns.
In a self-directed model, participants may have substantial responsibility for identifying problems and deciding how to respond. Some programs provide support with these responsibilities, but the extent of that assistance varies.
An agency-based arrangement may offer a formal supervisory structure, a management contact, documentation procedures, and a process for responding to concerns. These features can be particularly useful when an individual needs help communicating concerns or evaluating whether a support arrangement remains appropriate.
However, agency involvement does not automatically guarantee effective oversight. The quality of supervision, responsiveness, staff training, and incident management matters more than the model's label alone.
The importance of appropriate safeguards
Depending on the individual's circumstances, useful safeguards may include:
Clear written descriptions of support responsibilities.
A reliable way to report concerns or request changes.
Appropriate supervision and review of service delivery.
Documentation of missed shifts and significant concerns.
A process for addressing performance or boundary issues.
A plan for responding to suspected exploitation, neglect, or other safety concerns.
Regular review of whether the current arrangement continues to meet the individual's needs.
For individuals who experience difficulty with judgment, memory, or self-advocacy, safeguards may need to be designed so that concerns can be identified and addressed without placing the entire burden on the person receiving services.
The goal is not to remove the individual's voice. It is to make sure that the person has meaningful control while also having access to the assistance and protections appropriate to their circumstances.
7. Agency-Based Support: Potential Advantages and Important Limitations
Agency-based services can offer an alternative when managing individual workers becomes too demanding. The organization may assume responsibility for recruitment, staffing coordination, supervision, and other operational functions, depending on the service agreement and program requirements.
For an individual with ABI, these arrangements may reduce the administrative burden associated with maintaining support and create a clearer route for addressing staffing concerns.
Potential advantages include the following.
Centralized staffing coordination
An agency may maintain a pool of workers and coordinate staffing changes through an established management structure. Where sufficient staffing resources exist, this can make it easier to respond to absences or vacancies.
Defined management responsibilities
A designated manager or supervisor may provide a point of contact for concerns about scheduling, service delivery, staff conduct, or changes in the individual's needs.
Training and communication
An agency may be able to provide orientation, written guidance, and staff communication to support more consistent service delivery. The actual level of training and oversight should be confirmed with the provider.
Reduced administrative burden
The organization may take responsibility for employment-related tasks that would otherwise fall to the participant or representative. This can free the individual to focus more on personal goals, daily routines, and community participation.
A framework for continuity planning
Agencies may have procedures for responding to staff turnover, service disruptions, and changing support needs. Families should ask specifically what backup coverage is available and what happens when the agency cannot immediately fill a shift.
Agency-based care is not automatically better
It is important to acknowledge that agency-based services also have limitations.
An agency may experience staffing shortages, high turnover, communication difficulties, or delays in responding to requests. Workers may have less familiarity with the individual than a long-standing self-selected support person. Scheduling arrangements may offer less flexibility, and organizational policies may not always align perfectly with an individual's preferences.
Some agencies provide strong supervision and consistent staffing. Others may not.
For this reason, choosing an agency should involve asking specific questions about staffing stability, backup coverage, staff preparation, communication, complaint procedures, and the individual's role in directing their own services.
The objective is not to replace one set of challenges with another. It is to identify the model that offers the most appropriate balance of autonomy, reliability, accountability, and individualized support.
8. What the Research Says About Community-Based Care and Participation
The evidence on community-based brain injury support reinforces the importance of individualized planning, but it does not establish that one service-delivery model is universally superior.
A systematic review and meta-analysis published in 2020 examined participation-based interventions for people with acquired brain injury. Nine studies met the review's inclusion criteria, and the meta-analysis found a statistically significant effect favoring participation-based interventions on participation outcomes.
The authors concluded that interventions addressing participation in meaningful daily activities are important for community living after ABI.
Peer-reviewed research: Ahn, S.-N. (2020). Participation-Based Intervention With Acquired Brain Injury: Systematic Review and Meta-Analysis.
This is an important distinction. The goal of support is not simply to ensure that a worker is assigned or that a scheduled shift is completed. Support should help the individual participate in daily life in ways that reflect their goals and needs.
A person may have adequate assistance with basic tasks but still lack meaningful access to recreation, relationships, employment, or community activities. Another person may have a preferred support worker but experience repeated gaps in coverage that undermine their ability to maintain routines.
An effective plan must consider both the delivery of assistance and the outcomes the assistance is intended to support.
Matching the model to the individual
For one person, self-direction may work well because they can manage recruitment and scheduling, have a strong network of support, and value the flexibility of choosing their own workers.
For another, agency-based support may be more appropriate because executive functioning difficulties make ongoing staffing management challenging, or because family members cannot reliably coordinate the arrangement.
A third person may benefit from a hybrid approach, where the participant retains meaningful input into worker selection and daily routines while an agency manages staffing, employment administration, and backup arrangements.
The right choice depends on the individual, the available services, program rules, and the quality of the support structure.
9. Warning Signs That a Self-Directed Arrangement May No Longer Be Working
A self-directed arrangement that once met an individual's needs may become less suitable as circumstances change.
A worker may leave. Family support may become less available. The individual's cognitive or physical needs may change. Alternatively, the administrative burden of managing services may become more difficult over time.
Recognizing these changes early can help prevent a temporary problem from becoming a prolonged disruption.
Families, participants, and care coordinators may wish to review the arrangement when they observe any of the following:
Repeated staffing gaps. Shifts are missed or cancelled, and replacement workers are not secured within a reasonable period.
Difficulty recruiting or retaining workers. The individual is unable to identify suitable replacements or repeatedly loses staff without a workable contingency plan.
Increasing reliance on relatives. Family members must regularly intervene to arrange staffing, address conflicts, or coordinate essential services.
Unresolved concerns about support quality. Problems with communication, reliability, boundaries, or task completion continue without an effective response.
Administrative responsibilities are becoming overwhelming. The individual struggles to complete the steps necessary to maintain the arrangement, even when the importance of those steps is understood.
Essential needs are going unmet. The person is unable to obtain the assistance needed for daily activities, appointments, community participation, or other authorized supports.
A change in functional needs. New or worsening difficulties mean that the previous arrangement no longer provides an appropriate level of assistance.
These warning signs do not automatically mean that self-direction must end. They indicate that the existing arrangement should be reviewed and that additional assistance, a different staffing strategy, or a change in service model may be warranted.
Where there is an immediate safety concern, appropriate urgent assistance should be sought rather than waiting for a routine administrative transition.
10. Questions to Ask When Considering a Transition to Agency-Based Services
For individuals and families who are considering moving from self-directed to agency-based care, the transition should be planned around actual support needs rather than treated solely as an administrative change.
The following questions may help clarify available options.
Questions about staffing
How does the agency recruit and match workers with participants?
What happens when a regular worker is sick or leaves?
Is backup coverage available, and under what circumstances?
How does the provider prepare incoming staff to understand the individual's needs and routines?
Questions about oversight and communication
Who is the designated contact for concerns?
How are missed shifts and service disruptions addressed?
How can the participant request changes to the support arrangement?
What procedures are used when the individual's needs change?
Questions about autonomy and person-centered care
How will the participant remain involved in selecting or meeting potential support workers?
How are preferences, routines, and communication needs incorporated into support planning?
What opportunities will the individual have to direct daily activities and develop independence?
How does the agency balance safety with the individual's right to make decisions?
Questions about the transition itself
What eligibility and authorization requirements apply?
What documentation is needed?
How long is the anticipated transition period?
Can an expedited review be requested when the current arrangement has broken down?
What interim options may be available if authorized supports are not currently being delivered?
These questions are particularly important when the participant is already experiencing gaps in support. A transition plan should account for the time required to establish the new arrangement and identify the appropriate steps for communicating urgent concerns to the relevant program or responsible authority.
The availability of expedited procedures or interim services depends on the specific program and circumstances. Families should seek clarification from the appropriate program administrator or care coordinator rather than assume that a particular pathway is available.
11. Implications for Connecticut's Medicaid Waiver Participants
In Connecticut, eligible individuals may receive home- and community-based services through Medicaid waiver programs and other authorized service arrangements. The exact services, eligibility criteria, participant responsibilities, and available provider options depend on the applicable program.
For brain injury survivors, the decision between self-directed and agency-based services can have significant practical implications.
An arrangement may offer flexibility and personal control but still be difficult to maintain if the individual cannot reliably recruit workers, coordinate schedules, or respond when a staffing relationship ends.
Conversely, an agency may provide a more structured arrangement but still need to demonstrate that it can deliver dependable services, respect individual choice, and respond appropriately to the participant's needs.
The importance of reassessment
When a support arrangement breaks down, the issue should not automatically be framed as a failure by the participant.
It may indicate that the demands of the service model exceed the resources available to manage it, that staffing conditions have changed, or that the person's needs require a different level of coordination.
A review should consider what has changed, what responsibilities the individual can reasonably manage, what assistance is available from family or other supports, and whether an alternative model would better meet the person's needs.
Where an individual has no reliable support workers in place, it is especially important to communicate the situation promptly to the appropriate program representative and clarify what options exist to address the service gap.
The aim should be to restore appropriate support as efficiently as possible while respecting the participant's rights, preferences, and eligibility requirements.
Supporting independence requires more than offering a choice
Choice is an essential component of person-centered services. However, meaningful choice also requires access to options that are workable in practice.
If an individual is offered a self-directed model but cannot maintain staffing because of cognitive limitations, insufficient informal support, or an unstable workforce, the formal availability of choice may not translate into sustainable independence.
A well-designed system should recognize that individuals may need different levels of assistance to exercise control over their lives.
For some people, independence means managing their own support workers. For others, it means directing the goals and activities of their support while an organization assumes responsibility for the staffing and administrative infrastructure.
Neither arrangement should be treated as a measure of personal worth or capability. The relevant question is which structure best enables the person to live safely, participate meaningfully, and maintain as much autonomy as possible.
Conclusion: The Best Support Model Is the One That Works Reliably for the Individual
Self-directed care can offer meaningful control, flexibility, and personal choice. Agency-based services can offer organizational coordination, supervision, and potential continuity mechanisms. Both models have strengths and limitations, and neither is automatically appropriate for every brain injury survivor.
The critical issue is whether the service arrangement remains sustainable as the individual's needs, resources, and circumstances change.
For some individuals with ABI, cognitive difficulties can make the ongoing responsibilities of recruiting, supervising, and replacing support workers particularly demanding. When these responsibilities exceed the person's available capacity and resources, staffing gaps and unmet needs may follow.
In those circumstances, agency-based services may provide a more workable structure, provided the agency can demonstrate reliable staffing, appropriate oversight, responsive communication, and respect for individual choice.
The research supports individualized planning, participation-focused support, and attention to the needs of both brain injury survivors and their families. It does not justify assuming that one model will always produce better outcomes. Decisions should be grounded in the individual's functional abilities, preferences, support network, and the actual quality of the available services.
At The Supported Living Group, the broader goal of community-based support is to help individuals pursue meaningful lives in their homes and communities. That requires more than arranging a service on paper. It requires a support structure that can respond when circumstances change and continue to serve the person whose needs are at the center of the plan.
Independence should not depend on an individual having to manage a support system that they cannot reasonably sustain. Effective support means preserving choice while ensuring that the assistance needed to make community living possible is dependable, appropriate, and responsive.
References and Further Reading
The following peer-reviewed publications inform this article:
Hauger, S. L., et al. (2022). Community-Based Interventions After Acquired Brain Injury—A Systematic Review of Intervention Types and Their Effectiveness. Journal of Head Trauma Rehabilitation, 37(5), E355–E369.
Andrews, C., et al. (2026). Understanding the Support and Information Needs of Family Members After Acquired Brain Injury: A Systematic Review.
Ahn, S.-N. (2020). Participation-Based Intervention With Acquired Brain Injury: Systematic Review and Meta-Analysis.
Leonard, R., Linden, M. A., & Holloway, M. (2025). Case Management for Acquired Brain Injury: A Systematic Review of the Evidence Base. Brain Injury, 39(5), 337–358.
Important note on the evidence: These publications examine community-based interventions, care transitions, family support, participation, and brain injury case management. They do not directly establish that agency-based Medicaid waiver services are superior to self-directed services. The comparisons and practical considerations in this article are presented as service-planning implications, not as proven comparative treatment effects.
Disclaimer: This article is for informational purposes and does not constitute legal, medical, or Medicaid eligibility advice. Program requirements and service options vary. Individuals and families should consult the appropriate program administrator or care coordinator for guidance specific to their circumstances.