http://bmsbdac.org/, http://brettstaples.org/

Brett M. Staples Brain Disorder Awareness Coalition, PO Box 22, Jay, ME (2026)

09/04/2026

Should Families Be Asked for Input During Psychiatric Evaluations?

We believe they should.

Imagine someone experiencing psychosis arrives at an emergency room. During a short evaluation, they are calm, cooperative, and able to answer basic questions. They say they're fine and want to go home.

But their family has seen something very different.

They may know their loved one hasn't slept for days, has stopped eating, has become increasingly paranoid, is responding to things others cannot see or hear, has stopped taking prescribed medication, or has made frightening statements. They may also know what happened during previous episodes and recognize that the same pattern is happening again.

If anosognosia is present, the person may genuinely be unable to recognize that they are ill. That makes information from people who know them well especially important.

Family input should never automatically determine the outcome of an evaluation. The clinician must make an independent professional assessment, and the rights and privacy of the person being evaluated matter. But shouldn't that assessment include relevant information from the people who have watched the crisis unfold?

And remember: HIPAA generally does not prevent families from giving information to healthcare providers, even when providers may be limited in what they can disclose back.

What do you think? Should asking families for input be a standard part of psychiatric crisis evaluations whenever appropriate?

Share your experience respectfully in the comments.

Serious no fault brain disorders are not a choice.
Share to spread awareness.

Presented by the Brett M. Staples Brain Disorder Awareness Coalition
🌐 brettstaples.org
📧 [email protected]

09/03/2026

How the IMD Exclusion Creates Barriers to Care

Imagine having a serious no fault brain disorder, desperately needing intensive inpatient treatment, and discovering that the way Medicaid is structured can make it harder for you to receive that care.

The IMD Exclusion is a longstanding federal Medicaid policy that generally restricts federal Medicaid funding for certain services provided to adults ages 21–64 in psychiatric facilities with more than 16 beds. It was created decades ago, in part to shift responsibility away from large state psychiatric institutions. But today, it can contribute to a system where adequate longer-term psychiatric treatment capacity is difficult to maintain.

What happens when appropriate treatment beds aren't available? Too often, people cycle through emergency rooms, brief hospitalizations, homelessness, repeated crises, or the criminal justice system. Families may watch someone deteriorate while being told there is nowhere appropriate for them to go. We closed or reduced institutional care without building enough treatment capacity to meet the needs of everyone who requires intensive care.

Protecting people from unnecessary institutionalization is important. But so is ensuring that people who genuinely need inpatient psychiatric treatment can receive it. A hospital bed should not become harder to access simply because the illness involves the brain. We need federal policies that protect individual rights while allowing states to build a full continuum of care—from strong community services to appropriate inpatient treatment when necessary.

People should not have to become homeless, incarcerated, repeatedly hospitalized, or dangerously ill before our system finds a way to treat them.

Treatment should come before tragedy.

Serious no fault brain disorders are not a choice.
Share to spread awareness.

Presented by the Brett M. Staples Brain Disorder Awareness Coalition
🌐 brettstaples.org
📧 [email protected]

09/02/2026

Why Family Support Still Matters

When someone is living with a serious no fault brain disorder, treatment matters—but so does having someone who continues to care.

Family support can take many forms. It might mean driving someone to an appointment, helping them find housing, encouraging treatment, learning about their disorder, recognizing early warning signs, or simply answering the phone when they're having a difficult day. Sometimes it means advocating when they cannot advocate effectively for themselves. Other times, it means stepping back and setting healthy boundaries while continuing to love them.

Families cannot cure schizophrenia, bipolar disorder, schizoaffective disorder, or other serious brain disorders. Love alone is not treatment. But family support can be an important part of a larger system of treatment, community services, stable housing, and ongoing care. Families often know a person's history, baseline behavior, previous crises, and what has helped—or failed—in the past.

And support doesn't require perfection. Families become tired. They become frustrated. They make mistakes. Sometimes relationships become strained or need distance. Supporting someone doesn't mean sacrificing your own health, safety, or entire life. It means doing what you reasonably can while recognizing that you need support too.

For someone struggling with a serious brain disorder, knowing that even one person still believes their life has value can matter enormously.

Never underestimate the power of saying: “I love you. I haven't given up on you. And when you're ready for help, I'll help you find it.”

Serious no fault brain disorders are not a choice.
Share to spread awareness.

Presented by the Brett M. Staples Brain Disorder Awareness Coalition
🌐 brettstaples.org
📧 [email protected]

09/01/2026

When You Don’t Recognize the Person You Love

One of the most heartbreaking parts of a serious no fault brain disorder can be watching someone you have known and loved for years begin to seem like a different person. Their beliefs may change. Their behavior may change. They may become suspicious of the very people who have always loved them most.

A parent may hear their child say, “You’re trying to hurt me.” A spouse may suddenly be treated like a stranger or an enemy. A sibling may watch someone who was once warm and outgoing become isolated, frightened, or consumed by delusions. You know the person you love is still there, but sometimes the symptoms make them incredibly difficult to reach.

For families, there is a particular kind of grief in this. You remember the conversations, laughter, plans, and person you knew before the illness became so severe. Yet the person you love is still standing in front of you. You haven't stopped loving them. You just desperately want to reach them again.

And there can still be hope. Treatment, stability, time, and the right support can help some people reconnect with themselves and the people they love. Recovery may not mean returning to exactly who someone was before—but moments of connection can return. The illness may change what you see today, but it does not erase the person you love.

Serious no fault brain disorders are not a choice.
Share to spread awareness.

Presented by the Brett M. Staples Brain Disorder Awareness Coalition
🌐 brettstaples.org
📧 [email protected]

08/31/2026

What Every Emergency Room Should Ask Families

When someone arrives at an emergency room experiencing a serious brain disorder, the person being evaluated may not be able—or willing—to provide an accurate picture of what has been happening. They may appear calm during a brief evaluation even though their family has watched them deteriorate for days, weeks, or months. If anosognosia is present, they may genuinely believe nothing is wrong.

That's why families can provide important information. Emergency room professionals should ask: What has changed from this person's normal behavior? Are they sleeping? Eating? Taking prescribed medication? Have they become increasingly paranoid, delusional, confused, or withdrawn? Have they made statements about su***de, violence, or feeling unsafe? Are they able to care for their basic needs? Is there a history of hospitalization, psychosis, dangerous behavior, or rapid deterioration? And importantly: What are you seeing at home that we may not be seeing here?

Families often know the person's baseline better than anyone. A parent may recognize subtle warning signs that preceded a previous crisis. A spouse may know the person hasn't slept for four nights. A sibling may know that seemingly harmless statements have a much more concerning meaning based on past behavior. That information can be important to a complete clinical evaluation.

Listening to families does not mean families make the medical decision. It means clinicians have more information when making that decision. And HIPAA generally does not prevent families from giving information to healthcare providers, even when providers may be limited in what they can disclose in return.

A psychiatric evaluation should consider more than what happens during a few minutes in an emergency room. Families can help provide the bigger picture.

Serious no fault brain disorders are not a choice.
Share to spread awareness.

Presented by the Brett M. Staples Brain Disorder Awareness Coalition
🌐 brettstaples.org
📧 [email protected]

08/30/2026

Stability May Look Different, But It Is Still Success

We often measure success by the same familiar milestones: a career, a home, financial independence, marriage, children, and a busy social life. But for someone living with a serious no fault brain disorder, success may look very different—and that doesn't make it any less meaningful.

Success might mean taking medication consistently, keeping appointments, maintaining stable housing, learning to recognize symptoms, reconnecting with family, or going months without a hospitalization. It might mean working a few hours a week instead of full-time. It might mean living in supportive housing rather than independently. Sometimes success is simply waking up, following a routine, and making it through another day safely and peacefully.

Families can struggle with this too. We remember the dreams we once had for our loved ones and may grieve when life takes a different path. But recovery isn't about forcing someone's life to look like everyone else's. It's about helping them build the safest, healthiest, most meaningful life possible for them.

As another week begins, celebrate progress for what it is. Don't compare your loved one's journey to someone else's. Stability is an accomplishment. Fewer crises are an accomplishment. A peaceful life is an accomplishment. Different does not mean failure.

Serious no fault brain disorders are not a choice.
Share to spread awareness.

Presented by the Brett M. Staples Brain Disorder Awareness Coalition
🌐 brettstaples.org
📧 [email protected]

08/29/2026

“I Didn’t Realize How Burned Out I Was Until I Had Nothing Left to Give.”

Caregiver burnout doesn't always happen all at once. For me, it happened slowly. One crisis became another. One sleepless night became dozens. There were phone calls, appointments, hospital visits, battles with the system, worries about medication, housing, safety, and what might happen next. I kept telling myself, “Just get through today.”

Eventually, I realized I wasn't really living my own life anymore. I was exhausted even after sleeping. I stopped returning calls from friends because I didn't have the energy to explain what was happening. Things I once enjoyed didn't seem important. I became frustrated more easily, and then I felt guilty for being frustrated. The person I loved had a serious no fault brain disorder—what right did I have to complain? So I kept pushing myself.

Then I finally understood something: Burnout didn't mean I loved my family member any less. It meant I had been carrying too much for too long. Caregivers are human. We need rest. We need support. We need someone who will listen to us. Sometimes we need permission to say, “I can't do everything.”

If you are caring for someone and recognize yourself in these words, please don't wait until you have nothing left. Reach out to someone you trust. Accept help when it's offered. Take a break when you can. Taking care of yourself isn't abandoning the person you love. It helps make it possible for you to continue loving and supporting them.

Serious no fault brain disorders are not a choice.
Share to spread awareness.

Presented by the Brett M. Staples Brain Disorder Awareness Coalition
🌐 brettstaples.org
📧 [email protected]

08/28/2026

ANOSOGNOSIA AND CIVIL RIGHTS: WHEN DOES PROTECTING A PERSON’S RIGHTS BECOME ABANDONING THEM?

Our recent post about anosognosia and individual rights generated a tremendous amount of discussion. Many of the comments raised an important question that deserves more than a short answer:

Where should society draw the line between protecting a person’s civil liberties and intervening when a serious brain disorder has impaired that person’s ability to recognize that they are ill?

Before going any further, we need to make one distinction absolutely clear:

Most people living with a brain disorder do NOT need involuntary intervention.

Having schizophrenia, schizoaffective disorder, bipolar disorder, or another serious brain disorder does not automatically mean someone lacks insight, lacks decision-making ability, or needs someone else making decisions for them.

Many people recognize that they have an illness. They participate voluntarily in treatment. They make informed decisions about medication and other care. They work, raise families, maintain relationships, live independently, and direct their own lives.

A diagnosis alone is never enough to justify taking away someone’s liberty.

That is not what this discussion is about.

This discussion is about a much smaller group of people whose illness becomes so severe—and whose insight may become so impaired by anosognosia—that they cannot recognize that they are ill or appreciate the consequences of refusing treatment.

That distinction is essential.

WHAT IS ANOSOGNOSIA?

Anosognosia is not simply denial.

It is not stubbornness.

It is not someone saying, “I know I’m sick, but I don’t want treatment.”

It is an impairment in awareness of one’s own illness. It is recognized in neurological conditions such as stroke and dementia and can also occur in serious psychiatric disorders, particularly schizophrenia.

A person experiencing severe anosognosia may genuinely believe there is absolutely nothing wrong with them.

Imagine being told that you need medication for an illness that you are completely convinced you do not have.

From your perspective, refusing treatment may seem perfectly rational.

Now imagine that the untreated illness is simultaneously contributing to paranoia, delusions, hallucinations, or severely disorganized thinking.

That is very different from an informed person understanding their diagnosis, weighing the potential benefits and risks of treatment, and deciding against it.

MOST PEOPLE SHOULD MAKE THEIR OWN DECISIONS

This point cannot be emphasized enough.

The overwhelming goal should always be voluntary treatment and personal autonomy.

If someone understands their condition and can make an informed decision—even a decision that family members or professionals disagree with—that person’s rights deserve protection.

People are allowed to make choices others consider unwise.

Having a brain disorder does not change that fundamental principle.

Nor should unusual behavior, unconventional beliefs, homelessness by itself, disagreement with doctors, or refusal of a particular medication automatically trigger involuntary treatment.

Intervention should be reserved for circumstances in which clearly defined medical and legal standards are met.

We should never build a system around the assumption that people with serious brain disorders cannot make decisions for themselves.

Most can.

The challenge is creating a system capable of recognizing and responding appropriately when someone temporarily or persistently cannot.

“BUT THEY HAVE THE RIGHT TO REFUSE.”

Yes.

People have rights, and those rights deserve strong protection.

But when severe illness and anosognosia are present, we also need to ask:

What constitutes an informed refusal?

In medical decision-making, there is an important difference between having a diagnosis and lacking decision-making capacity.

Someone can have schizophrenia and still make fully informed medical decisions.

Someone can experience psychosis and still retain significant decision-making ability.

And someone can disagree with their doctor without being incapable of making decisions.

But there are also circumstances in which illness becomes so severe that a person’s ability to understand or appreciate their own condition is profoundly impaired.

That is the difficult population we are talking about.

WHAT HAPPENS WHEN THAT SMALLER GROUP CANNOT GET HELP?

Families often describe a heartbreaking cycle.

A loved one who previously functioned well becomes increasingly ill.

They stop treatment because they sincerely believe they are not sick.

The family asks for help.

They are told the person has the right to refuse.

The illness progresses.

Another crisis occurs.

Then another.

Eventually the person may lose housing, become repeatedly hospitalized, become vulnerable to exploitation, encounter law enforcement, or end up incarcerated.

Sometimes families are essentially told:

“They aren’t sick enough yet.”

Then, after enough damage has occurred, the system finally intervenes.

We should be willing to ask whether waiting for catastrophe truly protects someone’s rights.

HOMELESSNESS ISN’T FREEDOM.

Neither is incarceration.

Neither is repeatedly cycling through emergency departments.

Neither is living in terror because untreated paranoia has convinced you that people are trying to harm you.

Neither is being so disorganized that you cannot consistently obtain food, shelter, medical care, or basic personal safety.

Again, this does not describe most people with brain disorders.

It describes some of the most severely ill people—particularly those whose illness includes profound lack of awareness of their condition.

We should not use the needs of this smaller population to justify unnecessary intervention in everyone else.

But neither should we use the fact that most people don’t require intervention as an excuse to abandon those who genuinely do.

Both mistakes violate people’s rights.

THERE MUST BE SAFEGUARDS

Supporting intervention in carefully defined circumstances does not mean supporting unlimited government authority.

Any system allowing involuntary intervention should have strong protections against misuse.

There should be clear medical and legal criteria.

There should be due process.

The individual should have representation and an opportunity to be heard.

Decisions should be reviewed.

Treatment should be individualized.

The least restrictive effective alternative should be used whenever possible.

And intervention should never be based solely on a diagnosis.

Those safeguards are essential because history gives us good reason to be cautious whenever government has the power to restrict liberty.

But acknowledging that danger does not require ignoring the danger on the other side:

A system can cause tremendous harm by intervening too readily. It can also cause tremendous harm by refusing to intervene when severe illness has destroyed someone’s ability to recognize that they need help.

RIGHTS INCLUDE MORE THAN THE RIGHT TO SAY “NO”

A person has a right to dignity.

A right to appropriate medical care.

A right to due process.

A right to be protected from unnecessary coercion.

A right to live in the least restrictive environment reasonably possible.

And when severe illness has temporarily taken away someone’s ability to direct their own life, we should care deeply about helping that person regain as much autonomy as possible.

For some people experiencing severe illness and anosognosia, successful treatment can restore insight and stability.

That matters when we talk about freedom.

The person who eventually returns to making decisions about housing, relationships, work, education, treatment, and everyday life may have far more meaningful autonomy than the person continually cycling between untreated psychosis, emergency rooms, homelessness, and jail.

THIS IS NOT “FORCED TREATMENT FOR PEOPLE WITH BRAIN DISORDERS”

That is an important distinction.

The position is much narrower:

Voluntary care for the vast majority. Carefully limited intervention, with strong safeguards, for the relatively small number of people whose severe illness has substantially impaired their ability to recognize their condition and who meet established legal criteria.

That should be the conversation.

Not diagnosis versus freedom.

Not families versus patients.

Not treatment versus civil rights.

The goal should be:

Treatment WITH rights.

Intervention WITH safeguards.

Medical care WITH dignity.

The least restrictive approach appropriate to the individual’s circumstances.

And whenever possible, help before someone’s entire life has collapsed.

We should absolutely be concerned about inappropriate involuntary treatment.

We should also be concerned about inappropriate non-treatment.

Because there comes a point when we have to ask:

Are we protecting someone’s rights—or are we allowing an illness to take away the very freedom we say we are protecting?

Most people with brain disorders will never reach that point.

But for those who do, they deserve a system capable of recognizing the difference.

The question should never simply be:

“Does this person have rights?”

Of course they do.

The better question is:

How do we protect BOTH their civil liberties and their opportunity to survive, recover, regain stability, and exercise meaningful control over their own life?

Protect the rights of people who can make informed decisions.

Protect the rights of people who temporarily cannot.

We can—and must—do both.

Serious no fault brain disorders are not a choice.

Share to spread awareness.

Brought to you by the Brett M. Staples Brain Disorder Awareness Coalition
brettstaples.org
[email protected]

08/28/2026

True or False: Most People With Serious Brain Disorders Are Violent.

False.

One of the most damaging stereotypes about people living with serious no fault brain disorders is that they are automatically dangerous. The overwhelming majority are not violent, and a diagnosis by itself does not tell us whether someone will become violent. In fact, people living with serious brain disorders can themselves be especially vulnerable to victimization, exploitation, homelessness, and abuse.

That doesn't mean families should ignore dangerous behavior when it does occur. Certain circumstances—including severe untreated symptoms, substance use, a history of violence, or an acute crisis—can increase risk for some individuals. We should be able to acknowledge those risks honestly without labeling an entire population as dangerous. When warning signs are present, they should be taken seriously and appropriate intervention should be available.

Stigma creates another problem: if society automatically associates serious brain disorders with violence, people may become afraid to disclose symptoms or seek treatment. Families may also hesitate to talk openly about what is happening. We can advocate for early intervention and effective treatment while also rejecting the stereotype that people with serious brain disorders are inherently violent.

What did you think before reading this—True or False? Share your thoughts in the comments. Education is one of the best tools we have for replacing fear with understanding.

Serious no fault brain disorders are not a choice.
Share to spread awareness.

Presented by the Brett M. Staples Brain Disorder Awareness Coalition
🌐 brettstaples.org
📧 [email protected]

08/27/2026

Why Caregivers Need More Support

Behind many people living with serious no fault brain disorders is a family member quietly holding everything together. They make the phone calls, provide transportation, search for treatment, attend appointments when allowed, respond to crises, help with housing and finances, and advocate when their loved one is unable to advocate for themselves.

Yet caregivers are too often treated as an afterthought. Families may provide care 24 hours a day but struggle to get basic information or have their concerns taken seriously. They may tell professionals that their loved one is deteriorating, becoming psychotic, stopping medication, or behaving very differently—only to feel that no one is listening until the situation becomes a full-blown crisis. Meanwhile, caregivers themselves can experience exhaustion, isolation, financial strain, and burnout.

Supporting caregivers means more than telling them to practice self-care. Families need education about serious brain disorders, help navigating complicated treatment systems, respite and peer support, meaningful ways to share information with treatment providers, and a voice when crisis and treatment systems are being designed. Listening to families is not the same as taking away the rights of the person receiving care.

When we support caregivers, we aren't helping only the caregiver. We strengthen the entire support system surrounding the person living with the brain disorder. Families shouldn't have to become exhausted, financially overwhelmed, or emotionally broken before someone asks, “What can we do to help you?”

Serious no fault brain disorders are not a choice.
Share to spread awareness.

Presented by the Brett M. Staples Brain Disorder Awareness Coalition
🌐 brettstaples.org
📧 [email protected]

Brett M. Staples Brain Disorder Awareness Coalition

09/04/2026

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