When Families Aren’t Prepared: The Hidden Consequences of Inadequate Education After a Brain Injury.

When a loved one sustains an acquired brain injury (ABI), life changes instantly and permanently. Yet despite the profound cognitive, behavioral, medical, and emotional needs that follow a brain injury, families are often discharged from hospitals or inpatient rehabilitation with minimal education, limited preparation, and an overwhelming expectation to “figure it out” at home.

As Connecticut’s largest provider of community-based ABI Waiver services, we at The Supported Living Group see the consequences of this systemic gap every day. Families who desperately want to support their loved one simply haven’t been given the information, training, or guidance they need. And the impact on safety, stability, finances, and long-term outcomes is significant.

1. Hospitals Often Prioritize Rapid Discharge Over Family Preparedness

Across the United States, acute care and inpatient rehabilitation systems operate under enormous financial and insurance-driven pressure to discharge patients as quickly as possible. Research from the National Institutes of Health and the Traumatic Brain Injury Model Systems shows that lengths of stay for brain injury rehabilitation have steadily decreased over the past two decades, even as survivor needs have grown more complex.

As a result:

• Families receive condensed or incomplete training on behavioral changes, medication management, neurocognitive deficits, and safety risks.

• Discharge summaries often emphasize “progress” rather than ongoing impairments.

• Medical teams may downplay needs to avoid family resistance to discharge.

This is not due to a lack of care from providers; it's the reality of a system driven by insurance limitations and bed-turnover requirements.

But for families, this often means returning home with a loved one who now requires constant supervision, structured support, and complex care, despite reassurances that they are “fine at home.”

2. Families Are Unprepared for the True Level of Need

Numerous studies, including those from the CDC and BIAA, show that caregivers of brain injury survivors experience some of the highest stress levels of any caregiver group in the U.S.

Most of this stress stems from not being prepared for:

• Executive dysfunction

• Memory loss

• Impulsivity and judgment impairment

• Behavioral changes

• Emotional dysregulation

• Sleep disturbances

• Physical limitations

• Fatigue and overstimulation

Families often report feeling blindsided, believing the discharge plan reflected their loved one’s actual functioning, not their best moments observed in a structured hospital environment.

Without proper education, families don’t know:

• How to structure daily routines

• How to prevent safety risks

• How to respond to behavioral escalation

• What level of supervision is medically necessary

• How to navigate triggers or overstimulation

• What resources and programs are available

This lack of knowledge creates preventable crises, unnecessary hospital readmissions, and emotional strain that impacts the entire family system.

3. Uninformed Families Struggle to Access ABI Waiver and MFP Programs

Brain injury survivors rarely qualify for Connecticut’s ABI Waiver, ABI II Waiver, or MFP-ABI programs immediately after injury. Eligibility often requires meeting specific criteria related to functional limitations, supervision needs, and community-based difficulties.

When families are not educated, they may unknowingly:

• Underreport needs

• Decline formal services

• Minimize impairments

• Attempt to “do it all themselves”

• Fail to document safety concerns

• Miss critical application windows

This unintentionally delays eligibility for Medicaid programs designed specifically to support long-term recovery and independence.

Even more concerning, MSKTC research shows that families are frequently never informed that these programs exist.

The result?

Families drain personal savings, reduce work hours, quit jobs, or place their loved one in unsafe situations simply because no one explained that specialized State and Federal programs were available.

4. In Some Cases, Hospitals Downplay Needs to Avoid Delayed Discharge

This is an uncomfortable reality, but it exists.

Families often hear statements like:

• “He just needs a little help at home.”

• “She’s safe to return with support from family.”

• “He doesn’t need 24/7 care, just supervision.”

• “You can help with medication reminders.”

These statements may be well-intentioned, but they can also:

• Minimize the complexity of the survivor’s deficits

• Lead families to underestimate the severity of impairment

• Prevent families from advocating for longer rehabilitation stays

• Delay qualification for ABI Waivers or MFP programs

Some hospitals worry that if they portray the survivor’s needs accurately, families may resist discharge, thereby delaying bed turnover and increasing uncompensated care days.

This systemic issue results in survivors returning home with higher needs than the family can sustainably manage.

5. The Consequences Are Real and Long-Lasting

When families are undereducated and undersupported, the effects ripple across the survivor’s entire recovery journey:

• Increased risk of falls, injuries, and medical crises

• Behavioral escalation or domestic conflict

• Inappropriate guardianship petitions due to confusion

• Loss of employment for family caregivers

• Financial instability

• Social isolation for both survivor and caregiver

• Untreated mental health symptoms

• Delayed connection to essential programs like the ABI Waiver

Most critically, lack of early education often leads to the survivor progressing through the community unprepared, reducing long-term independence and increasing the risk of institutional placement.

6. What Needs to Change

To prevent these outcomes, the brain injury field must commit to:

1. Mandatory family education before discharge

Covering safety, supervision needs, behavioral changes, and available programs.

2. Early referral to community-based brain injury providers

Before, not after, families struggle.

3. Honest communication regarding long-term functional needs

Including the likelihood of future services such as ABI Waivers.

4. Inclusion of community providers in discharge planning

Organizations like SLG can help families understand support systems and eligibility pathways.

5. A shift from a “medical stabilization model” to a “continuum of care model”

Where recovery is viewed as a long-term process rather than a hospital event.

SLG’s Role in Supporting Families

At The Supported Living Group, we specialize in helping families rebuild after a brain injury. Our ABI Waiver, clinical, residential, vocational, and community-based programs provide the structure and support needed for meaningful recovery.

We also help families:

• Understand eligibility for Connecticut’s ABI and MFP programs

• Navigate complex care systems

• Build realistic, person-centered goals

• Establish routines that foster independence

• Reduce caregiver stress through education and skill-building

No family should face the aftermath of brain injury alone or unprepared.

If you or someone you support is navigating the challenges of brain injury recovery and needs guidance on ABI Waiver services, MFP programs, or community-based supports, we are here to help.

📞 (860) 774-3400
🌐 supportedlivinggroup.org

The Supported Living Group
Connecticut’s leader in community-based brain injury services.