Anosognosia, HIPAA, & Assisted Outpatient Treatment

Anosognosia, HIPAA, & Assisted Outpatient Treatment

by | Jan 12, 2025 | Advocacy, Family Life Education

Three Issues Families Face

There are three common themes that families face when their loved ones with serious mental illnesses/serious brain diseases (SMI/SBD), like schizophrenia spectrum disorders, schizoaffective disorder, and bipolar disorder, need help.

The first theme involves the symptom of anosognosia, which means “unaware of being ill.” Even when there is a diagnosis of an SMI/SBD, the lack of insight by the individual into having a major, lifelong, chronic illness that affects their brain and influences their identity is a stumbling block for recovery or stability. Anosognosia is a significant factor in treatment non-compliance and not voluntarily accessing treatment. And it stands to reason; who would take medication for an illness they don’t believe they have? To this end, the National Shattering Silence Coalition has produced a fantastic brochure written by Darrell Herrmann that explains psychosis, psychotic illnesses, and anosognosia and provides a powerful resource when attempting to collaborate with your family member’s treatment team. You can download it here.

The second theme that frustrates family members and caregivers is the restrictions for a reciprocal flow of information due to the current HIPPA laws. Initially, the laws were designed to prevent employers and other public entities from accessing our personal medical information. However, HIPPA has been extended to withhold any access to share medical information without the patient’s permission. In practice, this means that our loved ones with SMI/SBDs and anosognosia can effectively prevent us from participating in their treatment.  Family members and caregivers naturally have valuable personal information that the treatment team should know, and it is imprudent to ignore it. When they contact the treatment team, the professionals often disclose contact and personal information from outside sources directly to the patient. In other words, the treatment team is given this valuable information. Then, it discloses to the client who gave them the information and what the information is. Doing this can irreparably damage the relationship between patient and caregiver. I tell my clients that a federal law can be cited to protect this information from being shared with their loved ones. HIPAA does not restrict “family” from sharing information with providers. Family could mean anyone actively engaged in caregiving, such as parents, siblings, spouses, adult children, partners, significant others, close friends, etc. Maintaining an up-to-date mental health history (click to review the TAC mental health history example) and sharing it with providers is an excellent way to advocate for better care. If a provider says they cannot speak with you due to HIPAA rules, calmly explain that you are not asking for confidential medical information; you are offering to share information to help them provide exemplary patient care and are sharing this information confidentially. According to the HIPAA Privacy Rule and Sharing Information Related to Mental Health (Click to review the Dept. of Mental Health HIPAA Privacy Rule and Sharing Information Related to Mental Health document), information provided by someone who is not a health care provider may be withheld from the patient under federal law: 45 CFR 164.524(a)(2)(v) (Click to review the National Archives Code of Federal Regulations), which states: “An individual’s access to protected health information may be denied if the protected health information was obtained from someone other than a health care provider under a promise of confidentiality and the access requested would be reasonably likely to reveal the source of the information.”

The third theme concerns civil commitment as a response to the failure of the mental health system to care for the most sick and vulnerable is well established. Civil commitment is the involuntary commitment of an individual with SMI/SBD to receive treatment, outpatient support, and medication compliance to prevent the cycle of repeat hospitalizations or incarceration. Assisted outpatient treatment (AOT) is a tool that civil courts and mental health systems employ collaboratively to help individuals with SMI/SBD who have demonstrated difficulty engaging with treatment voluntarily reverse the cycle of repeat hospitalization and incarceration. Through a court order and enhanced monitoring, AOT aims to (1) motivate and assist individuals with SMI/SBD to engage in treatment and(2) ensure that the mental health system is attentive to the needs of its most vulnerable clients. The Treatment Advocacy Center (Click to go to the TAC homepage) advocates for and monitors Assisted Outpatient Treatment (Click to go to the AOT home page) that when systematically implemented and adequately resourced, AOT can dramatically reduce hospitalization, criminalization, and other adverse outcomes for its target population. The numbers speak for themselves (Click to review the 2024 data); involvement with AOT reduces homelessness by 70%, suicidal ideation is reduced by 72%, illicit substance use is down by 52%, and 92% of AOT users are satisfied with the services. Understanding the benefits of AOT (Click to review the brochure, “Myths and Facts about AOT) through civil commitment is a way to promote positive outcomes for your loved ones and your family (click here for brochure: What families need you to know). AOT is sanctioned by law in nearly every state; most states have a substantial need for programmatic implementation at the local level. To find your state’s AOT resources, click here.

I hope these resources assist you in your ongoing caregiving journeys. If you want or need support as you implement these themes and solutions into your life, feel free to participate in the Replanting Lives Peer Support Group (Link to replanting Lives), which meets every Wednesday at 7 pm EST on Zoom, or talk with us about Caregiver Coaching (Link to PTP Coaching Services).

 

.

When Parents Are Rejected

When Parents Are Rejected

by | Dec 15, 2024 | Coaching, Connections, Estrangement, Family Life Education, Parenting, Rejection

When Parents Are Rejected

I have added coaching through estrangement to my practice since this issue comes up regularly in the work I do with families impacted by the serious mental illness (SMI), also referred to as serious brain disease (SBD) of an adult child. During the initial 20-minute consultation, parents are asked the following questions:

“How long has your child gone no contact?”

“Has your child been diagnosed with a serious mental illness?”

“What happens when you have contact?”

“What happens when you reach out?”

“Are other family members also being rejected?”

“Do you want to reconcile?”

One of the common threads in the answers given is that their child has been diagnosed with a serious mental illness. Their child’s narrative includes a litany of complaints about mistreatment and abuse at the hands of the parents despite overwhelming evidence to the contrary. When this happens, the adult child is in a delusional state. A delusion is a belief that something is real when it is not. This is why the parents’ efforts to connect are rebuffed. Often, the parents unwittingly trigger their child by arguing with the delusion. This results in anger and vitriolic communication from the child to the parent. The child wants the parents to apologize for the abuse, and the parents are genuinely baffled when there has not been a history of abuse. Another common symptom of SMI is anosognosia, which is a lack of awareness or insight that one is ill. Trying to reason with someone who clings to an altered version of their life (a delusion) and has no insight that they have a serious mental illness is at the root of these estrangements.

Most parents who wish to participate in coaching had close, loving relationships with their children until their children became sick. By the time they reached out for coaching, they had tried everything they could think of to no avail. They realize that reconciliation is not possible with this child. The only way reconciliation can happen is when the child becomes stable through treatment and with the guidance of a team that understands SMI. They can learn the symptoms of their illness and sometimes identify the delusional thinking that has brought them to the loss of their families. Today, however, their parents are not interested in being verbally abused, misused, and spurned by the child they loved with all their hearts. They are ready to let go, detach, and move on because that is what they can do.

Whenever a loved one is diagnosed with a chronic illness, especially a chronic brain disease like schizophrenia, schizoaffective disorder, bipolar disorder with psychotic features, and others, there is a shift in the family’s constellation. Relationships change. The uncertainty of instability coupled with non-compliant medical care keeps families guessing how to proceed. Under the best of circumstances, the family can acknowledge the loss it feels, realign its roles, and integrate their loved one seamlessly. When a loved one is delusional, displays anosognosia, and lashes out at family members, estrangement is a logical outcome. Rarely is rejection only of the parents; it usually includes siblings and extended family.

Coaching is a process where I partner with the parents and develop actionable plans to heal the deep hurt caused by this betrayal so that the parents can get to a place where they understand their child has an unasked-for brain disease and do the hard work of forgiving them. This does not mean that the hurt is minimized. Parents are deeply hurt and experience a betrayal of a primary relationship wherein they won’t trust their child like that again. Relationships change anyway when there is an unasked-for brain disease involved. Rejection by a beloved child is a hard pill to swallow, mainly because it severs the bond between parent and child, preventing them from developing a new relationship due to the diagnosis of a serious mental illness.

I am not a professional without lived experience of this phenomenon. When one of my daughters was diagnosed with Bipolar 1, she was delusional. She accused me of terrible abuses from her childhood. I was shocked, confused, and bewildered. She was my Velcro child. I was her strongest advocate. I was the parent who showed up for her whenever she needed me. Her dad and I offered financial aid when she was unemployed after graduating college so she could keep her apartment and remain independent. When the narrative of abuse began, I did not know this was a symptom of her illness. The therapist she was seeing bought the story even though she had been told of my daughter’s recent diagnosis, and the goal of therapy was to help her understand the illness and her symptoms. The therapist was clueless about SMI, delusional thinking, and anosognosia and focused instead on the alleged trauma, adding teeth to the delusion. My daughter managed to remove every person in her life who refuted her version of her childhood in support of the delusion she presented, that of a traumatized person, a survivor of terrible abuse. In my journey, I came to understand that my daughter’s SBD created a narrative that is a common symptom of SMI. I learned to reach a place of forgiveness for her behavior because, after all, she is ill. Sheri McGregor’s books Done with the Crying: Help and Healing for Mothers of Estranged Adult Children and Beyond Done with the Crying have been the most helpful for me and the ones I recommend the most. The Facebook community is also a great resource.

When you are ready for additional support, consider reaching out for coaching. Contact me.

Support Kickstarter Campaign

by | Oct 14, 2022 | Family Life Education

The Book Is Being Written

The Twelfth Step: Share Hope, Strength, and Experience

I have lived my life with the mission of easing my family’s pain.  From a very young age, I wanted to help my grandmother who suffered from manic depression.  She was brilliant, creative, generous, and kind when she was well.  When she was unwell, she was sent to the hospital.  Our connection was strong and influenced my educational and vocational choices.  

In 2014, I founded a nonprofit organization based on my need to find the resources and materials to guide our family through the rocky terrain of serious mental illness.  I had the professional experience through having worked in community programs with the seriously mentally ill, their families, and mentoring other professionals.  I had the personal experience of many first-degree family members living with mood disorders, physical illnesses, and then my beloved daughter was diagnosed with bipolar disorder.

Although the journey has been emotionally difficult for our family, I know we are not alone.  Frankly, there are too many of us who are adrift, searching for that ever-elusive anchor to stabilize our families.  I have been encouraged to share my story, to “get it out there,” and to practice the twelfth step, “Having had a spiritual awakening as the result of these Steps, we tried to carry this message to others, and to practice these principles in all our affairs.”

I hope this book will be an avenue to engage others on the path.

Click Here for the Campaign
Verified by MonsterInsights