What Does Connecticut Need to Do Differently to Make the ABI Waiver Actually Work for Survivors?
A policy, rehabilitation, and community-living perspective on ABI I, ABI II, cognitive disability, service capacity, aging, and the future of brain injury services in Connecticut
For many Connecticut residents living with an acquired brain injury, the hardest part of surviving the injury is not always the initial hospitalization, rehabilitation, or even the first year of recovery.
Sometimes, the hardest part comes later.
It is what happens when the rehabilitation hospital discharge plan becomes a Medicaid service plan.
It is what happens when a survivor can physically dress themselves but cannot reliably organize their morning, manage medication, recognize a dangerous situation, regulate emotions, remember appointments, navigate transportation, manage money, maintain employment, or safely make decisions without support.
It is what happens when a parent who has provided unpaid care for years begins to age.
It is what happens when a service authorization expires while a participant is still waiting for a revised plan.
And it is what happens when the Medicaid system recognizes that a person has an acquired brain injury, but the mechanisms used to determine what that person actually needs do not adequately capture the cognitive, behavioral, executive, and social consequences of living with brain injury.
Connecticut does not need to decide whether people with acquired brain injury deserve community-based services. The state has already made that decision by creating the ABI Waiver.
The more difficult question is whether Connecticut's current system is designed well enough to make those services actually work.
That question is particularly timely in September 2026.
The Connecticut Department of Social Services (DSS) has proposed renewing the Acquired Brain Injury I (ABI I) Medicaid waiver, whose current authority expires December 31, 2026. The proposed renewal identifies one substantive change: adding agency-based Personal Care Assistance (PCA), a service already available under ABI II. Public comments on the proposed renewal are due September 24, 2026.
Adding agency-based PCA is potentially meaningful. For some survivors and families, it may close an important service gap.
But if Connecticut wants the ABI Waiver to truly function as a modern home- and community-based rehabilitation system, the conversation cannot stop with PCA.
Connecticut should use this moment to ask a much bigger question: What would an ABI Waiver look like if it were designed around how people actually live with brain injury?
The ABI Waiver is supposed to do something fundamentally different from institutional care
Connecticut describes the ABI Waiver as a Medicaid program using person-centered planning to provide non-medical home- and community-based services that allow adults with acquired brain injury to remain in the community when they would otherwise require institutional care.
That distinction matters.
The objective should not simply be:
Keep the person out of a nursing facility.
The objective should be:
Help the person build and maintain a meaningful, safe, productive, and sustainable life in the community.
Those are not the same thing.
A person can technically live outside an institution while experiencing profound isolation, dependence, unemployment, family exhaustion, financial instability, medication problems, repeated crises, or gradual loss of independence.
Community placement is therefore not the endpoint.
Community participation is.
Research consistently demonstrates that community integration after brain injury is influenced by cognitive functioning, disability, environmental factors, instrumental activities of daily living, social participation, and other variables.
That should influence how Connecticut thinks about waiver design.
ABI I and ABI II: Two waivers serving one population
One of the first issues Connecticut should reconsider is the structural distinction between ABI I and ABI II.
Connecticut's own long-term care planning documents identify meaningful differences between the two programs.
ABI II was implemented in 2014 to increase the number of waiver slots available to adults ages 18–64 with disabilities related to ABI. It has a lower individual cost cap—150% of institutional care costs compared with 200% under ABI I—and does not include Transitional Living Services. At the same time, ABI II includes additional services such as adult day health, ABI Recovery Assistant, ABI Recovery Assistant II, consultation services, and agency-based personal care.
This creates an important policy question:
Why should two Connecticut residents with substantially similar acquired brain injuries have fundamentally different service opportunities based upon which waiver structure they occupy?
The distinction may have administrative origins, historical reasons, or budgetary logic.
But from the perspective of a survivor and family, the experience can be very different.
One person may require intensive rehabilitation supports, personal care, behavioral supports, community integration, and ongoing supervision.
Another person may have similar needs but encounter a different set of service definitions, cost limitations, or available supports.
A brain injury does not become less complex because it falls under ABI II rather than ABI I.
Connecticut should therefore consider whether the current bifurcated structure continues to serve its intended purpose—or whether the state should move toward a more unified ABI service continuum with individualized funding based on actual need.
Cost caps should reflect disability—not merely institutional economics
Connecticut's existing ABI framework ties individual service-plan funding to alternative institutional care costs.
Current ABI regulations describe an individual cap of 200% of alternative institutional care costs, while also establishing an aggregate cap.
ABI II, meanwhile, has historically operated with a lower 150% individual cap.
The concept of comparing community-based services with institutional costs is understandable.
But there is a fundamental problem:
The cost of keeping someone institutionalized is not necessarily the same thing as the cost of helping that person live successfully in the community.
Community rehabilitation can require substantial individualized support precisely because the person is living in a less restrictive environment.
Consider a survivor who needs:
ILST several hours each week;
assistance developing routines;
medication-management support;
transportation training;
vocational rehabilitation;
community-based skill development;
behavioral support;
personal care;
supervision during high-risk activities;
assistance with budgeting;
support with appointments;
caregiver respite; and
ongoing community participation.
That individual may not need a nursing facility.
But they may still require a substantial investment to remain safely and meaningfully integrated in the community.
The policy question should therefore shift from:
"How much does institutional care cost?"
to:
"What level of investment is necessary to produce a sustainable community-based outcome?"
Connecticut should periodically reevaluate ABI cost caps against:
actual participant needs;
current provider costs;
labor-market conditions;
inflation;
service utilization;
geographic variation;
caregiver availability;
changes in the cost of institutional care; and
outcomes achieved through community-based rehabilitation.
A cost cap that is not periodically recalibrated can eventually become an artificial barrier to community living.
Service rates are not an administrative detail
This is one of the most important—and frequently misunderstood—issues in the ABI system.
Medicaid reimbursement rates determine whether services actually exist.
A service can appear in a waiver application.
It can be approved.
It can be included in a participant's service plan.
And it can still be functionally unavailable if providers cannot recruit and retain qualified professionals to deliver it at the established rate.
Connecticut's recent ABI waiver documentation itself notes that existing fee-schedule rates were based on a trended 2.5% increase from rates established in the initial ABI waiver.
That should prompt a serious policy conversation.
The question is not simply whether a rate increased.
The question is whether the rate reflects the current cost of delivering a clinically appropriate service.
For ABI rehabilitation, those costs include:
qualified staff;
supervision;
training;
clinical oversight;
documentation;
transportation;
travel time;
scheduling inefficiency;
cancellations;
insurance;
administrative infrastructure;
recruitment;
retention;
continuing education; and
the complexity of serving individuals with cognitive and behavioral disabilities.
A rate that looks adequate on paper may not be adequate in practice.
And when providers cannot sustainably deliver a service, the participant experiences the consequence as a service-access problem.
ILST is not simply "help around the house"
Independent Living Skills Training, or ILST, sits at the heart of community-based ABI rehabilitation.
It is also one of the services that best demonstrates why acquired brain injury cannot be evaluated solely through traditional activities of daily living.
A person may physically be capable of preparing a meal.
That does not mean they can independently:
plan meals;
create a shopping list;
remember ingredients;
budget appropriately;
recognize food safety problems;
sequence cooking tasks;
monitor time;
manage distractions;
clean afterward;
recognize when something has gone wrong; or
generalize the skill to a different environment.
This is where executive functioning becomes critical.
Research has demonstrated a relationship between executive functioning and instrumental activities of daily living following ABI. Executive impairments can affect transportation, money management, employment, independent living, and community participation.
That is why ILST should be understood as rehabilitation, not simply supervision.
The goal is not to do something for the survivor.
The goal is to determine:
What does this person need to learn, practice, compensate for, or relearn to become as independent as possible?
That distinction should be central to Connecticut's future ABI policy.
PCA and ILST are not interchangeable
The proposed addition of agency-based PCA to ABI I is important.
PCA can help a person with physical or personal-care needs accomplish activities that they cannot safely complete independently.
But PCA and ILST answer different questions.
PCA asks:
What assistance does this person need to complete necessary daily activities?
ILST asks:
What skills, strategies, environmental modifications, compensatory techniques, or supports can help this person become more independent?
Both may be necessary.
Neither should be treated as a substitute for the other.
For a person with significant executive dysfunction, replacing ILST with PCA may maintain the person's current level of dependence without addressing the underlying functional barriers.
Conversely, providing ILST to someone with substantial physical-care needs does not eliminate the need for hands-on assistance.
A modern ABI system should recognize the difference between:
care, support, rehabilitation, and skill development.
Nurse Consultant capacity matters because complexity requires clinical oversight
Another issue deserving more attention is Nurse Consultant capacity.
ABI participants are not simply individuals with a diagnosis.
They are often people living at the intersection of:
neurological impairment;
cognitive disability;
psychiatric symptoms;
medication complexity;
seizure risk;
mobility limitations;
behavioral changes;
chronic medical conditions;
substance-use histories;
communication impairments;
sensory issues; and
changing functional capacity.
A waiver system that manages these individuals primarily through administrative processing risks missing important clinical information.
Nursing consultation can provide a critical bridge between the participant's medical needs, functional needs, providers, and service plan.
But clinical capacity has to be sufficient.
If the infrastructure responsible for reviewing complex service plans, changes in level of care, or significant clinical documentation does not have adequate staffing, the result can be predictable:
backlogs.
And a backlog in Medicaid is not merely an administrative inconvenience.
For the participant, it can mean months of uncertainty.
Level-of-care determinations must capture cognitive disability
This may be the most important clinical issue in the entire conversation.
Traditional functional assessments often perform reasonably well when disability is visible.
A person who cannot transfer from a wheelchair to a bed has an observable support need.
A person who cannot reliably plan, initiate, sequence, monitor, and complete a task because of executive dysfunction may not.
The second person's disability can be much harder to observe during a short assessment.
This is particularly important in acquired brain injury.
A survivor may appear:
articulate;
physically independent;
socially pleasant;
oriented;
ambulatory; and
capable of answering questions.
And still be unable to safely manage life independently.
Executive dysfunction can affect judgment, planning, working memory, attention, reasoning, processing speed, initiation, inhibition, and cognitive flexibility. Research has linked executive-function impairment following ABI to difficulties with instrumental activities of daily living and community participation.
Therefore:
"Can the person physically do it?" is not enough.
The better question is:
"Can the person reliably, safely, consistently, and independently initiate, sequence, complete, monitor, and generalize the task in real-world conditions?"
That is a very different assessment.
Cognitive disability is a disability—even when nobody can see it
This distinction needs to become part of the public conversation about ABI.
Brain injury can produce disabilities that are invisible during a brief encounter.
A person may know what they are supposed to do but cannot initiate the task.
They may start the task but lose track of the sequence.
They may complete it once but fail to reproduce it tomorrow.
They may understand a question but require significantly more processing time.
They may know a rule intellectually but fail to apply it when emotionally overwhelmed.
They may recognize that something went wrong only after the consequences occur.
They may have limited awareness of their own deficits.
These are not failures of motivation.
They are not necessarily behavioral problems.
And they should not automatically be interpreted as noncompliance.
They can be manifestations of neurological disability.
A Medicaid assessment system designed around visible physical limitations can therefore systematically underestimate some survivors' needs.
Service-plan delays are not neutral
For policymakers, a delayed service-plan adjustment can look like an administrative matter.
For a survivor, it can be the difference between:
having enough support and not enough;
remaining employed and losing employment;
remaining safely at home and entering a facility;
having caregiver support and experiencing family burnout;
participating in the community and becoming isolated.
The ABI system needs clear expectations for processing service-plan changes.
That includes:
1. Defined timelines
Participants and providers should know how long routine and urgent requests are expected to take.
2. Escalation pathways
There should be an identifiable mechanism for addressing clinically urgent delays.
3. Transparency
Participants should not have to repeatedly ask where their request is in the process.
4. Adequate staffing
If the system does not have sufficient reviewers to process plans, adding more services to the waiver will not solve the underlying access problem.
5. Continuity protections
Participants should not experience avoidable interruptions in essential supports because an administrative review remains pending.
A waiver is only as functional as the administrative system that turns an approved benefit into an actual service.
Community integration should be an outcome—not an afterthought
One of the most significant opportunities for Connecticut is to redefine what "success" means.
Success should not simply be:
"The participant remains in the community."
It should include:
meaningful relationships;
employment or productive activity;
education;
recreation;
volunteering;
independent decision-making;
transportation;
community participation;
physical activity;
meaningful routines;
self-advocacy;
emotional well-being;
reduced caregiver burden; and
quality of life.
Research has repeatedly identified community integration as a major component of long-term recovery after TBI. A systematic review identified demographic, injury-related, disability/impairment, and environmental factors as predictors of community integration.
Other research has found relationships between cognitive functioning, daily living skills, community integration, and quality of life among people living at home following ABI.
And importantly, community-based programs can produce measurable benefits. One study of a social and recreational ABI day program found increased community integration and reduced family burden after participation.
This should inform Connecticut's policy.
Community integration is not recreation added after the "real" rehabilitation is complete.
For many survivors, community integration is rehabilitation.
We also need to talk about aging with ABI
Connecticut's ABI system cannot remain focused exclusively on what happens during the first several years after injury.
People with brain injuries age.
Some survivors have lived with their injuries for decades.
Others acquired their injuries in middle age and are now approaching older adulthood.
The needs of someone who sustained a brain injury at 25 and is now 65 are not necessarily the same as the needs of someone who sustained a brain injury six months ago.
Research on aging with TBI demonstrates that increasing age and greater time since injury can be associated with greater disability, reduced functional independence, and reduced community participation. The effects of chronicity may become particularly pronounced in later life.
Other research has found that access to home modifications and home-support services can be associated with long-term functional independence in older adults after TBI.
This creates an important policy challenge.
What happens when an ABI survivor ages out of the assumptions built into the system?
We need better answers.
Connecticut should be planning for:
aging caregivers;
changing medical needs;
dementia risk and cognitive decline;
mobility changes;
increased fall risk;
loss of employment;
retirement;
housing changes;
transportation needs;
changing social networks;
transition to Medicare;
interaction with other Medicaid programs; and
the possibility that a support system that worked at 35 may not work at 65.
A lifetime approach to ABI policy is overdue.
Caregiver burden has to become a system-level outcome
There is another person who frequently disappears from the Medicaid assessment:
the caregiver.
Parents, spouses, siblings, adult children, and other unpaid caregivers often provide extraordinary amounts of support.
They may manage medications.
They may supervise finances.
They may transport the survivor.
They may intervene during behavioral crises.
They may coordinate providers.
They may communicate with DSS.
They may compensate for executive dysfunction.
They may provide overnight supervision.
And they may do all of this while maintaining employment and managing their own health.
Research consistently identifies substantial physical and psychological burdens among caregivers of people with moderate-to-severe TBI. A systematic review found high rates of burnout, depression, fatigue, anxiety, and poorer well-being among informal caregivers.
A more recent scoping review identified information, education, respite, psychological support, peer support, financial assistance, and assistance with instrumental activities of daily living among the needs of families caring for people with TBI at home.
This suggests something important for Medicaid policy:
Caregiver capacity is part of the community-based care environment.
That does not mean families should be required to provide unpaid labor to make the waiver financially viable.
Quite the opposite.
It means the system should recognize that caregiver sustainability is essential to participant sustainability.
What Connecticut should do differently
If Connecticut genuinely wants to make the ABI Waiver work better for survivors, I would argue for at least 10 reforms.
1. Reevaluate ABI I and ABI II as a continuum
Connecticut should examine whether the distinction between the two waivers continues to produce meaningful policy benefits—or unnecessary differences in access.
The long-term goal should be a coherent ABI service continuum.
2. Modernize cost caps
Cost caps should be periodically recalibrated to reflect:
actual disability-related needs;
provider costs;
inflation;
workforce costs;
current institutional rates;
geographic variation; and
the actual cost of sustainable community living.
3. Establish a transparent rate methodology
ABI service rates should be based on the actual cost of delivering quality rehabilitation and support services—not simply historical rates plus incremental increases.
Rates should recognize:
clinical complexity + workforce costs + travel + supervision + documentation + administrative costs + retention.
4. Protect ILST as a rehabilitation service
ILST should be recognized as a core component of ABI rehabilitation.
Its purpose should be measured through outcomes such as:
independence;
skill acquisition;
reduction in support needs;
community participation;
employment;
safety;
self-management; and
quality of life.
5. Add PCA without substituting PCA for rehabilitation
The proposed addition of agency-based PCA to ABI I is potentially valuable.
But PCA should complement—not replace—ILST, behavioral support, community integration, and other rehabilitation services.
6. Increase Nurse Consultant capacity
Connecticut should assess whether current clinical review capacity is sufficient to support timely and clinically sound ABI decision-making.
Complex brain injury requires clinical expertise.
7. Modernize level-of-care assessments
Assessments should explicitly capture:
executive functioning;
memory;
initiation;
judgment;
processing speed;
cognitive fatigue;
self-awareness;
behavioral regulation;
safety awareness;
ability to generalize skills;
instrumental activities of daily living; and
caregiver dependence.
The system should evaluate reliability and independence, not merely whether a person can perform a task once.
8. Establish service-plan processing standards
Participants deserve clear expectations regarding:
routine service-plan adjustments;
urgent changes;
level-of-care reviews;
appeals;
escalation; and
continuity of services.
Administrative delays should not become clinical barriers.
9. Measure community integration
Connecticut should measure more than service utilization.
It should ask:
Is the person actually living a better life?
Potential outcomes include:
employment;
education;
volunteering;
social participation;
transportation independence;
reduced hospitalization;
reduced institutionalization;
caregiver burden;
quality of life;
increased independence; and
participant-defined goals.
10. Build an aging-with-ABI strategy
Connecticut should begin planning now for survivors who will age with their injuries.
The state should develop clearer pathways connecting ABI services with:
aging services;
Medicaid long-term services and supports;
Medicare;
home health;
primary care;
behavioral health;
housing;
caregiver supports; and
dementia and cognitive-aging services.
The ABI Waiver should not have an implicit expiration date simply because a survivor gets older.
The bigger question: What are we actually buying?
This may be the most important question for Medicaid policymakers.
When Connecticut authorizes ILST, PCA, community support, rehabilitation, or other ABI services, what is the state purchasing?
Is it simply hours of staffing?
Or is it purchasing:
independence?
safety?
employment?
community participation?
caregiver sustainability?
reduced institutionalization?
quality of life?
long-term health?
If the answer is the latter, then Connecticut should design its reimbursement, assessment, authorization, and oversight systems accordingly.
The ABI Waiver should be built around the survivor—not the system
The people living with acquired brain injury are not static.
Their needs change.
Their environments change.
Their families age.
Their health changes.
Their employment changes.
Their goals change.
Their functional abilities change.
And sometimes their support needs increase years after the original injury.
That means the ABI system must be capable of changing with them.
The goal should not be to create a service plan that looks appropriate on paper.
The goal should be to create a living rehabilitation system capable of adapting to the person.
That requires a different mindset.
It requires policymakers to understand that brain injury is simultaneously:
a neurological condition;
a cognitive disability;
a behavioral health challenge for some survivors;
a social participation issue;
a vocational issue;
a family issue;
a housing issue;
an aging issue; and
a Medicaid policy issue.
Trying to address it through a single administrative lens will inevitably leave important parts of the person invisible.
September 2026 is an opportunity
The proposed renewal of ABI I provides Connecticut with a timely opportunity to have this conversation.
The immediate proposal is relatively narrow: renew ABI I and add agency-based PCA. DSS has explicitly identified this as the substantive change in the current renewal proposal, with public comments due September 24, 2026.
That proposal deserves serious consideration.
But Connecticut should not lose sight of the larger opportunity.
The question should not simply be whether PCA belongs on ABI I.
The question should be:
What does Connecticut need to change so that an adult living with acquired brain injury can actually build and sustain a meaningful life in the community?
That means looking at the entire system:
Eligibility.
Level of care.
Assessment.
Cost caps.
Rates.
ILST.
PCA.
Nursing capacity.
Service-plan processing.
Community integration.
Caregiver support.
Aging.
And outcomes.
These are not separate issues.
They are pieces of the same system.
And when one piece fails, the consequences often appear somewhere else.
A service that is underfunded becomes a workforce shortage.
A workforce shortage becomes an access problem.
An access problem becomes a caregiver burden.
Caregiver exhaustion becomes a safety issue.
A safety issue becomes a hospitalization.
A hospitalization can become institutional placement.
And institutional placement is exactly what the home- and community-based waiver was designed to prevent.
That is why Connecticut should stop thinking about the ABI Waiver as simply a collection of Medicaid services.
It is a system for supporting people to live after brain injury.
And if we are serious about community living, then the standard should be higher than simply keeping someone out of an institution.
The standard should be whether the person has the opportunity, supports, and resources to live a meaningful life in the community.
That is what an effective ABI Waiver should make possible.
And that is the conversation Connecticut should be having now.
About the Author
Jamie Arber, MA, LPC, CBIS-T is a Connecticut clinician, brain injury professional, and community-based rehabilitation leader with more than two decades of experience supporting individuals with acquired brain injury and other disabilities. As Executive Director of The Supported Living Group, he has worked extensively at the intersection of community-based rehabilitation, Medicaid-funded services, clinical support, vocational development, and long-term community living.
His perspective is informed by both professional experience and lived experience with brain injury. His work focuses on translating the realities of life after brain injury into practical rehabilitation strategies and more responsive disability policy.
Through the SLG Brain Injury Resource Center, Arber writes about acquired brain injury, rehabilitation, Medicaid policy, community integration, employment, family caregiving, and the long-term realities of building a life after brain injury.