Speaking Up: A Survivor’s Perspective on ABI Waiver Challenges

Sharing my perspective as a brain injury survivor, I wrote this for all the caregivers and support staff who make a difference in our community every day. Your work matters—and so do your rights, your voices, and your well-being. If you’re part of this community, I invite you to read, share, and add your own experiences.

Life with Brain Injury | Surviving, Speaking Out, and Refusing to Be Erased

I live every day with the effects of a traumatic brain injury. While this is my story, I know it reflects the reality of many others navigating Connecticut’s ABI Waiver system—both survivors and the caregivers who support us.

Despite everything I’ve faced—memory loss, speech difficulties, balance issues—I remain determined to live independently and with dignity. The ABI Waiver program is supposed to make that possible. But “person-centered” is just a phrase if people with disabilities and their caregivers have no real say over their care or working conditions.

I’ve seen firsthand what happens when the system puts paperwork and profits over people:

• Caregivers denied sick days, paid time off, and basic job protections, despite laws that say otherwise.
• Repeated delayed paychecks, causing real hardship for dedicated staff.
• Agencies and oversight bodies passing the buck, saying they have “no control.”
• Survivors told we have rights and choices, only to find those rights ignored when we speak up.

Laws are meaningless if those responsible for enforcing them look the other way. Every time a caregiver is treated unfairly, it puts our stability and safety at risk. Every time a survivor is silenced, it hurts the whole community.

We need real accountability. Agencies, funders, and advocates must do their jobs: enforce the laws, investigate abuses, and protect the people at the heart of these programs.

My questions:

• Where do we turn when no one takes responsibility?
• How can we speak up without fear of losing support?
• What will it take for our voices to matter?

I share this not just for myself, but for every survivor and caregiver who feels trapped by a system that’s supposed to support us. We deserve better—respect, safety, and real choices. Our lives and our work matter.

If you’re a survivor or caregiver struggling with these issues, you are not alone. Speaking up isn’t easy, but it’s necessary.

Best, Craig Sears

For those who want a deeper look at the systemic issues and specific laws involved, I’ve shared a detailed analysis below/in the attached article:

Unspoken Truths: The Realities Facing ABI Waiver Participants and Caregivers in Connecticut

Many in Connecticut’s brain injury community depend on the ABI Waiver programs (Waiver One and Waiver Two) to live in the community, rather than in institutions or on the streets. Although these programs are supposed to be “person-centered,” in reality, neither participants nor their caregivers have meaningful control over how services are delivered.

As survivors, we are not just paperwork or case numbers—we are people with rights, needs, and a desire for dignity and independence. Many of us became advocates out of necessity, after experiencing firsthand the consequences of inadequate support: institutionalization, homelessness, or worse. The promise of a truly person-centered, cooperative approach is too often undermined by bureaucracy and lack of accountability.

Loss of Effective Oversight

When oversight of our programs transferred from the state-run Office of Protection and Advocacy for Persons with Disabilities to Disability Rights Connecticut (DRCT), families and survivors were promised seamless support and advocacy. Instead, many report increased difficulties in accessing meaningful help. Rights violations and abuses often go unaddressed, and the avenues for real assistance have become unclear or ineffective.

Systemic Issues for Staff and Participants

Providers are entrusted with public funds to care for vulnerable people, yet there is little oversight regarding how staff are treated or how services are provided. Staff commonly report:

• Denial of paid sick days, holidays, or any time off, even though Connecticut law requires paid sick leave.
• No access to health insurance, retirement plans, or other standard employment protections.
• Repeated delayed paychecks, leading to financial hardship.
• Wages only slightly above minimum wage, despite years of dedicated service.

These practices violate state and federal labor laws, such as the Connecticut Paid Sick Leave Law, Fair Labor Standards Act (FLSA), Connecticut Wage Payment Act, and the Connecticut Family and Medical Leave Act (CT FMLA). Despite clear legal protections, enforcement is lacking, creating hardship for workers and instability for those they support.

No Real “Person-Centered” Choice

Participants are told they have the right to choose their care providers, but when problems arise, requests for change are stalled or denied. Agencies tasked with funding and oversight often claim they have “no control” over provider practices—even though they distribute the funds and are legally responsible for oversight. Survivors and their teams are left powerless, with legitimate concerns dismissed or ignored.

Retaliation and Fear

Many fear that speaking up will result in retaliation, such as losing services or support staff. This silences people, trapping both survivors and caregivers in unsafe situations. The risk is real: when some have advocated for themselves or their staff, they have faced loss of services or further marginalization.

The Laws Are Clear—But Who Is Enforcing Them?

Numerous state and federal laws exist to protect both care recipients and their workers, including:

• The Americans with Disabilities Act (ADA)
• The Olmstead Decision (requiring services in the least restrictive setting)
• Section 504 of the Rehabilitation Act
• Medicaid Home and Community-Based Services (HCBS) Settings Rule
• Connecticut labor laws (paid sick leave, wage payment, minimum wage)
• Whistleblower and anti-retaliation protections

Yet, these laws are only as strong as their enforcement. Without oversight and consequences for violations, participants and caregivers are left vulnerable.

Key Questions for Our Community and State Agencies:

• Where can survivors and caregivers turn when their rights are violated, but agencies refuse to intervene?
• Is the system set up to silence complaints and maintain the status quo, rather than empower those it claims to serve?
• What will it take for agencies to truly protect the rights, safety, and dignity of people with brain injuries—and the workers who support them?

A Call to Action

These issues are not isolated—they are systemic, affecting countless survivors and their families. The integrity of the entire ABI Waiver program is at stake. We call on oversight agencies and state authorities to conduct meaningful investigations, enforce the laws already in place, and protect the rights of all participants and caregivers—without fear of retaliation.

Survivors and care workers deserve better. Silence and inaction only perpetuate injustice. It’s time for real accountability and real change.