Connecticut’s ABI Waiver Is Evolving: Why Agency-Based PCA, Aging Brain Injury Survivors, and Sustainable Funding Matter
By The Supported Living Group, LLC | ABI Knowledge Center
Connecticut’s ABI Waiver Is at an Important Crossroads
For more than two decades, Connecticut's Acquired Brain Injury (ABI) Waiver has provided an important pathway for adults with acquired brain injury to remain living in their homes and communities rather than entering institutional care.
In August 2026, the Connecticut Department of Social Services (DSS) announced its intention to renew the Acquired Brain Injury (ABI) I Waiver, whose current authority expires on December 31, 2026.
The proposed renewal includes one substantive change: adding agency-based Personal Care Assistance (PCA) as a waiver service. Agency-based PCA is already available under ABI Waiver II. DSS is accepting public comments on the proposed ABI I renewal through September 24, 2026.
This proposed change deserves attention.
It recognizes something that families, providers, clinicians and brain injury survivors have understood for years:
People do not stop aging simply because they have an acquired brain injury.
And the needs of a person living with brain injury can change substantially over the course of a lifetime.
For many Connecticut residents who sustained their brain injuries years or even decades ago, the question is no longer simply how to rehabilitate after an injury.
The question is:
How do we ensure that people can continue to live safely, meaningfully and as independently as possible as they age with an acquired brain injury?
Agency-based PCA can be an important part of that answer.
But it is not the entire answer.
As Connecticut considers the future of ABI Waiver I, policymakers should also examine whether the financial structure supporting individual service plans is keeping pace with the actual cost of providing those services—particularly for individuals with higher levels of need.
The ABI Waiver Was Created Around Community Living
Connecticut's ABI Waiver is a Medicaid Home and Community-Based Services program designed to provide non-medical services that allow adults with acquired brain injury to remain in the community when, without those supports, they would otherwise require institutional care.
DSS describes the ABI Waiver as a person-centered program providing a range of home- and community-based services to adults with acquired brain injury.
That principle is important.
The objective isn't simply to provide a collection of individual services.
The objective is to create a support structure that makes community living possible.
That distinction matters.
A person with an acquired brain injury may be physically capable of walking, eating and communicating while still requiring substantial assistance with:
planning and organization;
memory;
judgment;
medication management;
emotional regulation;
transportation;
personal care;
household responsibilities;
employment;
social participation;
community safety;
problem solving; and
adapting to unexpected situations.
Brain injury is often an invisible disability.
Someone may appear physically independent while experiencing profound challenges with the cognitive and executive functions necessary to manage everyday life.
Research supports the importance of continued community-based support and participation following acquired brain injury. A systematic review and meta-analysis found that participation-based interventions can improve participation outcomes and concluded that such interventions are important for community living following ABI.
This is why maintaining the right supports over time matters.
Connecticut's ABI Population Is Aging
One of the most important conversations Connecticut should be having is about aging with acquired brain injury.
Many people currently receiving ABI services did not sustain their injuries recently.
Some have been living with the consequences of their brain injury for 10, 20, 30 or more years.
They may have successfully established lives in their communities with the assistance of family members, caregivers and community-based services.
But aging can change the equation.
A person who was able to perform certain activities independently at 35 may require assistance at 55.
A family caregiver who was able to provide substantial support for decades may themselves now be experiencing limitations associated with age.
A person who once had sufficient endurance to complete a full day of community activities may experience greater fatigue.
A person who once managed personal care independently may begin to need hands-on assistance.
And an individual who has successfully compensated for cognitive limitations for years may find that those compensatory strategies become less effective as other age-related changes emerge.
This does not necessarily mean that the person's brain injury has become worse.
It means that the interaction between the brain injury, aging, environment and available supports has changed.
Brain Injury Doesn't Exist in a Vacuum
The long-term effects of acquired brain injury can intersect with the aging process in complicated ways.
Research increasingly demonstrates the importance of understanding the long-term neurological consequences associated with traumatic brain injury.
A 2023 systematic review examining the relationship between traumatic brain injury and dementia identified an association between TBI and later dementia in a substantial portion of the studies reviewed, although the authors emphasized important limitations in the evidence and cautioned against using the research to predict an individual's personal risk.
A separate systematic review and meta-analysis found that TBI was associated with an increased risk of dementia, while also finding that the relationship between TBI and Alzheimer's disease specifically was less consistent.
More recent synthesis of the literature has continued to identify an association between acquired brain injury and later cognitive decline and dementia, although the strength of those associations varies by injury type, severity and outcome.
These findings do not mean that every person with an acquired brain injury will develop dementia.
They do, however, reinforce an important policy principle:
Long-term brain injury support cannot be designed as though the population will remain permanently young, medically static and functionally unchanged.
Connecticut's ABI service system needs to anticipate the reality of people aging with brain injury.
Why Agency-Based PCA Could Be an Important Addition to ABI Waiver I
This is where the proposed ABI I renewal deserves recognition.
DSS is proposing to add agency-based Personal Care Assistance to ABI Waiver I. The service is already available under ABI Waiver II.
For some ABI survivors, this could fill an important gap.
Personal care needs are not necessarily the primary reason a person requires ABI services.
A person may primarily need cognitive, behavioral, executive-function or community-living supports while also developing increasing needs for assistance with activities of daily living.
That can create a difficult situation.
A participant may need:
assistance with bathing;
dressing;
grooming;
transfers;
toileting;
eating;
other activities of daily living;
while simultaneously requiring:
cognitive support;
community integration;
executive-function assistance;
behavioral support;
transportation;
vocational services; and
supervision related to safety and judgment.
Those needs should not be viewed as mutually exclusive.
They are often interconnected.
Connecticut's ABI regulations define activities of daily living to include tasks such as bathing, dressing, eating, transfers, and bowel and bladder care, and define hands-on care as assistance with ADLs that can include prompting and cueing.
For an aging ABI population, the availability of agency-based PCA could therefore provide an important additional tool for keeping individuals safely in the community.
Agency-Based PCA Can Help Preserve Community Living
Consider a hypothetical Connecticut ABI Waiver participant who sustained a traumatic brain injury many years ago.
For decades, that individual has lived successfully in the community.
They have developed routines.
They participate in activities.
They have relationships.
They may even work or volunteer.
But they are now aging.
Their endurance has decreased.
Personal care tasks are becoming more difficult.
Their family members are aging as well.
Without additional support, the individual may eventually require a higher level of care.
The addition of agency-based PCA could potentially provide targeted assistance with personal-care needs while allowing the individual's other ABI services to continue addressing cognition, independence, community participation and quality of life.
This is exactly what person-centered community support should be designed to accomplish:
support the person where they are now—not where they were years ago.
But Adding a Service Is Only Part of the Solution
The proposed addition of agency-based PCA is important.
However, Connecticut should also look carefully at another issue that receives considerably less public attention:
The relationship between service rates and individual ABI Waiver cost caps.
This is a complicated issue, but its consequences for participants can be significant.
Under Connecticut's ABI Waiver framework, an individual's service-plan costs are subject to an individual cost limit.
For ABI Waiver I, the individual service-plan cost limit is generally 200% of the annualized alternative institutional care cost. ABI Waiver II has a 150% limit. DSS's operational policy explains that the annualized alternative institutional care cost is based on the state's weighted average cost for the applicable institutional level of care, with the applicable income adjustment.
The regulations similarly establish an individual cap equal to 200% of alternative institutional care costs and require the individual's total service costs to be compared against the applicable individual and aggregate caps.
This structure serves an important purpose.
Medicaid Home and Community-Based Services waivers are designed around cost effectiveness and avoiding unnecessary institutionalization.
But there is an important question Connecticut should continue examining:
What happens when the cost of delivering community-based services increases faster than the financial capacity available under an individual's service-plan cap?
The ABI Waiver “Cost-Cap Squeeze”
Imagine a participant has an established service plan that costs $90,000 per year.
Their allowable cost ceiling is $100,000.
At first, there appears to be $10,000 of available capacity.
Now suppose reimbursement rates for several services increase.
The participant's existing service plan might now cost $98,000.
The participant has not become less independent.
Their needs have not decreased.
But the financial space available to add another service—or increase an existing service—has fallen from $10,000 to $2,000.
The participant can therefore experience a form of financial compression even though their actual needs remain unchanged.
This is what we refer to as the cost-cap squeeze.
And it becomes especially important for people who require higher levels of support.
Why Rate Increases Can Have an Unintended Consequence
Appropriate provider reimbursement is essential.
Brain injury services cannot be delivered sustainably without a workforce that is properly compensated and providers that can cover the actual costs of delivering high-quality community services.
Rate increases are therefore necessary.
But there is a distinction between:
the rate paid for a service
and
the total amount of service funding available to an individual.
If rates increase while the underlying cost-cap methodology does not keep pace proportionally, the same participant may be able to purchase fewer hours of support with the same overall spending ceiling.
This creates a difficult policy tension.
A higher reimbursement rate may help stabilize a provider's ability to deliver services.
At the same time, the participant's fixed or relatively constrained annual service-plan ceiling may mean that those higher rates purchase fewer units of support.
The issue is not that rate increases are wrong.
The issue is whether rate increases and individual service-plan funding are being considered together.
The Impact Can Be Greatest for Participants With Higher Support Needs
This issue deserves particular attention for individuals with more complex ABI support needs.
A participant requiring only a small amount of assistance may have considerable unused capacity beneath their cost cap.
A participant requiring a combination of intensive services may already be operating close to the ceiling.
For those participants, increasing the cost of individual services can have a disproportionate effect.
Consider a person who requires a combination of:
Independent Living Skills Training;
Recovery Assistant support;
vocational or prevocational services;
community-based cognitive or behavioral supports;
transportation; and
personal-care assistance.
If the cost of those services rises, there may be little financial room left to add support when the participant's needs change.
This can create an unfortunate situation:
The people with the greatest support needs may have the least flexibility within their service-plan budgets.
That is a policy issue worth examining.
The Problem Isn't Simply “Not Enough Money”
It would be easy to characterize the issue as simply needing more Medicaid funding.
The reality is more nuanced.
Connecticut has to balance:
Medicaid requirements;
federal waiver requirements;
state appropriations;
institutional cost neutrality;
provider reimbursement;
participant needs;
workforce availability;
and the long-term sustainability of community-based services.
The solution therefore requires more than simply increasing one number.
It requires examining how the pieces interact.
Should ABI Cost Caps Be Periodically Reexamined?
This is an important policy question for Connecticut.
The state already recognizes that cost caps need to be connected to the underlying cost of institutional care. Current ABI policy establishes the ABI I individual cap at 200% of the applicable alternative institutional care cost.
But as service delivery costs change, policymakers should consider whether the methodology adequately reflects:
changes in provider reimbursement;
workforce wages;
inflation;
increased operating costs;
changing participant demographics;
the aging ABI population;
increased personal-care needs;
higher-acuity community support needs; and
the actual cost of preventing institutional placement.
This isn't an argument for unlimited service spending.
It is an argument for alignment.
The funding structure should allow Connecticut to maintain its commitment to community living while ensuring that people who require substantial supports do not lose access to needed services simply because the cost of those services has increased.
Connecticut Has Addressed Similar Issues in Other Waiver Programs
There is precedent for Connecticut recognizing that waiver cost caps may need to change when service costs increase.
For example, in 2018, DSS proposed increasing the individual cost caps for the Personal Care Assistance Waiver and the Home Care Program for Elders specifically to reflect wage and rate increases for self-directed personal care assistants. DSS stated at the time that the caps needed to be increased to accommodate the changes so that service availability would remain the same.
That history is instructive.
It demonstrates that service-rate changes and cost-cap changes do not have to be treated as unrelated policy decisions.
They can—and arguably should—be evaluated together.
What Does This Mean for Connecticut ABI Waiver Participants?
For families and survivors, these policy discussions can seem abstract.
But ultimately they come down to very practical questions:
Can I continue receiving the hours of support I need?
What happens if my needs increase?
Will I be able to receive personal-care assistance as I age?
Can my existing services continue if reimbursement rates increase?
What happens if my family can no longer provide the same level of support?
Will the ABI Waiver recognize changes in my functional needs?
Can I remain in my home and community rather than entering an institution?
These are not theoretical questions.
They are questions about people's homes, relationships, employment, independence, safety and quality of life.
Community Living Is More Than Being “Out of an Institution”
There is another important point that should not be lost in the financial discussion.
Success should not be measured solely by whether someone avoids institutional placement.
Community living should mean having opportunities to:
make choices;
participate in meaningful activities;
develop relationships;
work or volunteer;
contribute to the community;
pursue interests;
maintain dignity;
exercise autonomy; and
continue developing independence.
Research involving people with ABI has demonstrated the importance of meaningful participation and social support in long-term community engagement. Studies have found that participation-focused interventions can improve community participation, while qualitative research has highlighted the role of social support, choice and control in maintaining engagement years after injury.
This reinforces a fundamental principle:
Community support isn't simply about keeping someone alive outside an institution. It is about helping someone live.
What Connecticut Should Consider Moving Forward
As DSS moves forward with the ABI I renewal, there are several important opportunities for discussion.
1. Support the addition of agency-based PCA
Agency-based PCA can provide an important service option for ABI I participants, particularly those whose personal-care needs change as they age.
2. Recognize the aging ABI population
Connecticut should continue examining the needs of individuals who have lived with acquired brain injury for decades and whose functional needs may evolve over time.
3. Examine service rates and cost caps together
When provider rates increase, policymakers should examine whether individual service-plan ceilings continue to provide enough capacity for participants to receive the services they require.
4. Protect higher-need participants
The people requiring the greatest intensity of support should not inadvertently experience the greatest reduction in service flexibility because of rising unit costs.
5. Evaluate cost-cap methodology periodically
Cost caps should be examined in relation to changes in institutional costs, reimbursement rates, inflation, workforce expenses and the actual cost of delivering community-based services.
6. Maintain the focus on preventing institutionalization
Every policy decision should ultimately be evaluated against the central purpose of the ABI Waiver:
Can this system continue allowing Connecticut residents with acquired brain injury to live safely and meaningfully in their communities?
The Provider Perspective Matters—But the Participant Must Remain at the Center
As one of Connecticut's largest providers of ABI Waiver support services, The Supported Living Group (SLG) sees firsthand the complexity of supporting individuals with acquired brain injury in community settings.
But this conversation is bigger than any single provider.
It is about the people receiving services.
It is about their families.
It is about caregivers.
It is about the professionals who provide support.
And it is about whether Connecticut can sustain a community-based system that allows people with acquired brain injury to remain where they belong:
in their homes, in their communities and in control of their lives to the greatest extent possible.
A Critical Opportunity for Connecticut
The proposed renewal of ABI Waiver I provides Connecticut with an important opportunity.
Adding agency-based PCA is a meaningful step toward recognizing the evolving needs of an aging ABI population.
But renewal should also prompt a broader conversation.
Are the financial structures supporting ABI services keeping pace with the actual cost of community living?
If the answer is no, then simply adding another service will not fully address the problem.
Connecticut should consider whether its cost-cap methodology remains sufficiently responsive to changes in reimbursement rates and the needs of individuals with complex or changing disabilities.
The goal should not be to spend more simply for the sake of spending more.
The goal should be to ensure that the state is investing appropriately in the supports that allow people to remain safely and successfully in their communities.
Because when community support works, everyone benefits.
The individual maintains independence.
Families experience greater stability.
Providers can deliver sustainable services.
And Connecticut can avoid the often far greater human and financial costs associated with unnecessary institutionalization.
Brain Injury Support Must Be Built for the Long Term
A person can sustain a brain injury in one moment.
But the consequences may last a lifetime.
That means Connecticut's ABI system must also be designed with the long term in mind.
People with acquired brain injury will age.
Their families will age.
Their support needs will change.
The cost of providing services will change.
And the system supporting them must be capable of changing with them.
Agency-based PCA is an important step.
Sustainable reimbursement is important.
Appropriate service-plan flexibility is important.
And realistic, periodically evaluated cost caps are important.
Ultimately, the success of Connecticut's ABI Waiver should not be measured only by how many people are enrolled or how many services are authorized.
It should be measured by something much more meaningful:
How effectively does the system help people with acquired brain injury continue to live the lives they choose, in the communities they call home?
That is the standard Connecticut should strive to meet as ABI Waiver I enters its next chapter.
Connecticut ABI Waiver I: 2026 Policy Update
DSS has announced its intent to renew the ABI I Waiver before its current authority expires on December 31, 2026. The proposed substantive change is the addition of agency-based Personal Care Assistance as a waiver service. Written comments are due September 24, 2026.
Families, ABI survivors, advocates, providers and other stakeholders who want to understand the proposal should review the current DSS materials and consider participating in the public-comment process.
The conversation about the future of brain injury services in Connecticut is happening now.
Research Supporting Long-Term Brain Injury Care
Hanrahan, J. G., et al. (2023). Is dementia more likely following traumatic brain injury? A systematic review. Journal of Neurology, 270, 3022–3051.
Gu, D., Ou, S., & Liu, G. (2022). Traumatic Brain Injury and Risk of Dementia and Alzheimer's Disease: A Systematic Review and Meta-Analysis. Neuroepidemiology, 56(1), 4–16.
Gardner, R. C., et al. (2023). Systematic Review, Meta-Analysis, and Population Attributable Risk of Dementia Associated with Traumatic Brain Injury in Civilians and Veterans. Journal of Neurotrauma, 40(7–8), 620–634.
Ahn, S.-N. (2020). Participation based intervention with acquired brain injury: Systematic review and meta-analysis. NeuroRehabilitation, 38(6), 419–429.
Self-reported outcomes and patterns of service engagement after an acquired brain injury: a long-term follow-up study.
Sloan, S., Bould, E., & Callaway, L. (2026). Enhancing participation outcomes for people with acquired brain injury, high and complex daily support needs and challenging behaviour. Journal of Mental Health Research in Intellectual Disabilities.
Important Note
This article is intended for public education and advocacy and does not constitute legal, medical, financial or Medicaid eligibility advice. Connecticut ABI Waiver policies, eligibility requirements, service definitions, rates and cost limitations may change. Readers should consult the Connecticut Department of Social Services for current program requirements and official policy documents.