social services, etc, during my brother Paul's tenure of of freedom,
combined with the Mental Health services he received, probably cost
more than had he remained in long-term care. I tried to find the numbers to support my position, but I was told by the Director of the National Institutes for Mental Health that the data is not available (yet).
Exactly how much longer will it take to get this data, I wonder? This social experiment has been going on for over 40 years now. Still, I'm sure the data would support my position, but what if it didn't?
What if it did cost less to put Paul - and his family, friends and the community - through the series 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 at the age of 48? 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 my brother, Paul. Would you do that to your grandmother?
not the overriding factor in the hospital closings however, money was.
The states, along with the federal government, thought it would cost less to treat their former patients in the communities from which they came. The Medicaid Institutes for Mental Diseases Exclusion was enacted to move patients into the community mental health system we have today. By excluding otherwise qualified patients in state hospitals from Medicaid, they created a dis-incentive to commit people to the state hospitals. Sounded like a good idea, on paper.
But the states went too far and released the sickest of the sick. I call it throwing the baby out with the bath water. They also did not have adequate housing set up. Now we
see these former patients 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. They have virtually no place to go.
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,
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
If long-term care is required for two people, one with Alzheimer's and one with schizophrenia, why does only the Alzheimer's patient receive the appropriate treatment? Why are people with illnesses in other organs
other than the brain, such as chronic lung disease, cancer, heart disease all deemed worthy of long-term care while people with brain disorders such as schizophrenia and bipolar
disorder are not?
There is no good reason. This is discrimination.
contact your US Representatives and tell them that if we really want to
end discrimination against people with a mental illness, the IMD
Exclusion 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 go to the Treatment Advocacy Center Website.