Would You Do This to Your Grandmother?I started to write about "the economics of long-term care for chronic mental illness" as Dr. Insel of the National Institute of Mental Health so succinctly put it. I believe that the costs for police, ambulance, social services, etc, during my brother Paul's tenure of freedom, combined with the Mental Health services he received, probably cost more than had he remained in long-term care. But what if it didn't? What if it did cost less to put Paul - and us - through the 8 years of infected feet, inadequate food, violent outbursts, and Paul's cycling in and out of local hospital psych wards, which ultimately lead to his early death? Was it worth it? I don't think so.
When I am asked how I can advocate for long-term care (institutionalization) and to justify the cost, I usually have to explain how sick Paul was and how he could have hurt himself or someone else, by accident. If he lived on his own, he would never have been able to manage his medications; he certainly didn't have the life skills to feed and bath himself properly. But doesn't this sound similar to how an Alzheimer's patient is sometimes described?
Think of it this way; if a nursing home chain were suspected of abuse, would we shut down the nursing homes? Maybe, but would we also release the patients into the community, tell them to learn to live on their own, cook their own meals and manage taking a list of medications on their own every day? I don't think so, but that is exactly what we did to people like Paul.
Abuse was not the overriding factor in the hospital closings however, money was. The states went too far and released the sickest of the sick. Now we see them on the streets and we pay for their long-term care in prisons and through our tax dollars that support the police, ambulance and other community services. According to The Treatment Advocacy Center, virtually no long-term beds are available to people like Paul, who cannot afford private hospitals.
Would we ask about the economics of long-term care for the sickest Alzheimer's patients? Sure, but with the assumption that they actually receive the appropriate, humane, long-term care they need. We would talk about the best delivery method for that care, not whether or not they should get it in the first place. Why don't we treat the sickest mentally ill patients the same way? The same issues regarding civil liberties compared to medical needs and physical/mental ability apply, don't they?
I don't get it. I'm just the sister of someone who was very sick. The illness was in his brain. It caused him to be confused and detached from reality. No drug therapy brought him back to reality. Sometimes he became so agitated, we were afraid of him. He was incapable of taking care of himself. This sounds like it could be a number of brain disorders that for some reason are not considered a Mental Illness, like Alzheimer's or even the after affects of a brain injury.
If long-term care is required for two people, one has Alzheimer's and one has schizophrenia, why is only Alzheimer's deemed worthy by Medicaid? Why is long-term care for illnesses in other organs such as chronic lung disorders, cancer, heart disease all deemed worthy by Medicaid while brain disorders such as schizophrenia and bipolar disorder are not? The main reason is that Medicaid laws state that patients in Institutes of Mental Diseases were unqualified to receive Medicaid reimbursement (well the institutions were, but effectively the patients were the ones that were denied care in the end).
This is federally sanctioned discrimination whether it is financially justified or not.
Please contact your US Representatives and tell them that if we really want to end discrimination against people with mental illness, the IMD Exclusion (IMD stands for Institutes for Mental Diseases) should be repealed. Support H.R. 619 sponsored by Rep. Edie Bernice Johnson of Texas, which does just that.
For more information about the IMD Exclusion, please read my post End Discrimination Against the Mentally Ill or go to the Treatment Advocacy Center Website.