National Family Caregivers Month, 2023
In 1997, President Bill Clinton signed the first National Family Caregivers Month presidential proclamation. This proclamation is made every year to recognize and honor family caregivers. As all caregivers know, we are the backbone of supporting our loved ones who are sick and/or disabled.
At Treatment Advocacy Center (TAC), we specifically recognize family caregivers whose loved ones have severe mental illness (SMI), such as schizophrenia and bipolar disorder. The efforts of these caregivers are largely unseen. We are met with distrust. We are pushed out of our loved ones’ treatment. We are far too often looked at as the problem: as interfering, controlling, or negative influences by people who don’t know us or our family dynamic.
This couldn’t be further from the truth. Families whose loved ones have SMI are the true historians of their loved ones’ illness. We know them better than any provider possibly could. Yet it’s very difficult to be recognized as a critical part of the treatment team.
Clinicians and other mental health professionals use privacy laws and HIPAA to exclude families from treatment plans. In most cases, these are misguided excuses to avoid interaction with families and close friends. The fact is, if families are included and educated in the illness and treatment process, we would see better outcomes in our loved ones who are afflicted with a serious illness.
In no other illnesses are families excluded. Yet HIPAA applies to all patients. Imagine if families were pushed away from the care of their loved ones who have Alzheimer’s or dementia? What if this exclusion of family input caused people with these degenerative diseases to become homeless, dangerous, or incarcerated?
There is no difference in the decision-making capacity of people with active Alzheimer’s, dementia, or psychotic illness. Why are people with schizophrenia spectrum disorders treated so differently? Capacity is capacity, regardless of which brain illness our loved one has.
In acknowledgement of National Family Caregiver Month, Treatment Advocacy Center will share personal stories by or about caregivers in our SMI community; information what ambiguous loss is and how to manage it; and exciting news about the upcoming launch of our Joan C. Scott Family Resource Center, which will provide critical tools and resources for caregivers of individuals with SMI.
This couldn’t be further from the truth. Families whose loved ones have SMI are the true historians of their loved ones’ illness. We know them better than any provider possibly could. Yet it’s very difficult to be recognized as a critical part of the treatment team.
Clinicians and other mental health professionals use privacy laws and HIPAA to exclude families from treatment plans. In most cases, these are misguided excuses to avoid interaction with families and close friends. The fact is, if families are included and educated in the illness and treatment process, we would see better outcomes in our loved ones who are afflicted with a serious illness.
In no other illnesses are families excluded. Yet HIPAA applies to all patients. Imagine if families were pushed away from the care of their loved ones who have Alzheimer’s or dementia? What if this exclusion of family input caused people with these degenerative diseases to become homeless, dangerous, or incarcerated?
There is no difference in the decision-making capacity of people with active Alzheimer’s, dementia, or psychotic illness. Why are people with schizophrenia spectrum disorders treated so differently? Capacity is capacity, regardless of which brain illness our loved one has.
In acknowledgement of National Family Caregiver Month, Treatment Advocacy Center will share personal stories by or about caregivers in our SMI community; information what ambiguous loss is and how to manage it; and exciting news about the upcoming launch of our Joan C. Scott Family Resource Center, which will provide critical tools and resources for caregivers of individuals with SMI.