Insurance Parity means nothing when hundreds of thousands of individuals with mental illness are discriminated against.
The mental health parity law, enacted in 2008, states that
health insurance companies cannot subject their customers to different treatment based on a diagnosis of mental illness or addiction. They cannot impose annual dollar limits or limits to the number of treatments per year as long as the same limits are in place for all other, medical illnesses. This was a long time coming as
the brain is an organ of the body just like any other, is it not? Why
should someone who has an illness located in his brain be treated differently
than someone with an illness in his pancreas or lung? There is no good
reason for this, and so came the mental health parity act to the rescue.
There is just one catch. The new, beloved, parity law still allows
discrimination against people with mental illness when it comes to access to
long-term care. This is the mental health system's dirty little secret and it
affects the people who need treatment the most. Our mental health system
delivers care in reverse proportion to the severity of the illness; it allows
for the discrimination against people who are the most in need of care and least
financially able to pay for it, the people on Medicaid. The health care reform
bill, currently under heated negotiation, will do nothing to help them either.
Neither the mental health parity law nor the health care reform bill removes
the Medicaid Institutes for Mental Diseases (IMD) Exclusion which excludes all psychiatric hospitals from Medicaid subsidies. The
consequences for this discriminatory provision, in place since Medicaid was
enacted in the 1960's, are that nursing homes will not accept people disabled
by mental illness for fear they will become classified as an IMD. This happens
when the percentage of the nursing home's patients with mental illness hits the 51% mark. When that happens, all of their patients loose their Medicaid eligibility, no matter what their patients' individual diagnosis happens to be.
Secondly, the state hospitals no longer keep patients on a
long-term basis because state hospitals are already classified
as IMDs.Therefore, the people who need treatment the most have no place
to go. Following their logic, if the federal government won't help pay for a mentally ill person's long-term care, they don't really need it.
In my opinion, the state hospitals could keep the patients that need long-term care, if they really wanted to. They
say they can't afford to pay for it, so they push their patients
out into the community where the local police, hospitals, social services, and other community agencies' meager budgets are in no better shape, even
with the Medicaid subsidies which are denied to the state by this discriminatory provision.
Worse, the former patients are responsible for dealing with a maze of
rules and regulations that some cannot handle. They are expected to manage
their own treatment plan when many of them don't even recognize they are
My brother, Paul, was committed to the state hospital system in 1977, after the IMD
Exclusion was enacted. He was released over 20 years later, a year or so
after my mother died; a decision I find suspect. I believe they took
advantage of the confusion my siblings and I were under, in the beginning, over
Paul's state of emancipation. After all, he was only 17 when he became a ward
of the state. What made things change? They
released him before we knew what hit us and led us to believe he would still be
"taken care of". He wasn't any better then than he was when my mother was
alive. It was all about money.
Some people mistake my call for the repeal of the IMD Exclusion as a call to
re-hospitalize, or "lock up" all people with a mental illness. They
don't realize how sick Paul was. All I ask is that each person be
evaluated independently; that one set of criteria be used to discern the need
for long-term care for all people, no matter what the illness is called or
where in the body the illness is located. Medicaid eligibility should be
determined by income level, not the type of hospital in which a person is
That is also not to say I want to go back to "warehousing" people
in large, cavernous state hospitals either. I think those days are over.
Nursing home-like or group home facilities are more in line with what I envision. All I
ask is that all people who need long-term care have access to it, and that we
provide that care in the most humane and less restrictive way possible. I also know this is
not as simple as it seems, believe me.
We deal with this situation today, with people who have Alzheimer's. Would
we ask a person with a severe form of Alzheimer's to live on his own, or cook
and clean for himself? No, I don't think so, yet that is what was asked
of Paul in the beginning. He went without food for almost a month, in one
instance, as a result. All because he had to be the one to fill out the
forms to renew his food stamps forms. He
was the one that needed to ask for help, when he was living in an "assisted" living
apartment complex. He had to learn to
live on his own, the case worker said to us afterwards.
Like other illnesses, mental illnesses have their severities. Some people
with even the severest forms of mental illness such as schizophrenia and
bipolar disorder can live independent and productive lives; I wish that were
Paul's case. But Paul was not alone. We see people like Paul on our
streets, they crowd our prisons, and they languish in adult homes.
After Paul was released from the state hospital, he spent 8 of the last 10
years of his life cycling in and out of psychotic events; he went from the local
ER room and psych ward, and sometimes to the state hospital, only to be
released again where the cycle would continue. At first, Paul
lived in an "assisted" living apartment, but when that became too difficult he was placed in an
Adult Home. He spent the last year of his life in a nursing home due to chronic
Ironically, I am thankful for that last year. Paul's mental state improved
to the point where we could actually have a somewhat normal life with him, like
anyone else with a family member in a nursing home, that is. His delusions
had logic of their own that we learned to follow; we were able to speak his
language, in a sense. We could hold normal conversations about the weather,
what to eat, what movie to watch, football, etc. Invariably, some delusion
would sneak its way in, and that was OK.
Paul had actually been this way, on and off, after he was placed on a new
medication a couple of years prior to his admittance to the nursing home, but
it was inconsistent due to other factors involved with living in an adult
home. That Paul had to get sick with chronic lung disease, then lung
cancer, before he was deemed worthy for the level of care he should have
received in the first place is bad enough; that it gave my family something of
our brother back only to watch him die from lung cancer is a kick in the gut no
one should have to go through.
The IMD Exclusion acts as a barrier to access to long-term care for the
poor and the middle class, who have a mental illness. It is
discriminatory and should be repealed. It is that simple.
Ilene is the 9th of 10 children, a twin-less twin, the mother of twin boys (aren't they supposed to skip a generation?) and a wife of 27 years.
Growing up in a large, Irish-Catholic family was an experience, to say the least, made that much more interesting given that she and her siblings were in their teen's and twenties during the 60's and 70's.
Ilene is a self-taught writer. Her common phrase is, "I am a technical writer by trade and a creative writer by desire". Ilene writes on a wide variety of subject matters that include family, politics, women's issues, health care, mental health care and anything that "gets her Irish up".
Ilene describes herself as a "born-again" Atheist. She doesn't have anything against people who believe in God or who follow the teachings of Jesus, Mohammad, Baha'u'llah, Confucius, Buddha, or whatever religious prophet and teachings that people follow. All she asks is that people accept that she can have good morals and values (yes that is very subjective) and not believe in God. Her mother used to say that the world would be a better place if people just followed the last 7 commandments.
Ilene was tremendously affected by the long-illness and early death of her twin brother, Paul. Paul was diagnosed with schizophrenia when they were only 16. He spent one year in a private hospital until the maximum lifetime limit was met on their health insurance policy. He was committed to a state mental institution at the tender age of 17 and spent the next 22 years between three different state hospitals. When the final push to release the patients into the community was made in the 1990's, Paul was moved to an "assisted" living apartment complex. When that proved too much for him, he was moved to an adult home. Paul's life during that time was like a nightmarish roller coaster ride from adult home to the local psych wards to the state hospital and back again, only to have the ride start all over again. He finally got off the ride when his emphysema was so bad that he was accepted into a nursing home in 2007. He was diagnosed with lung cancer a few months later and died on May 1, 2008.
While Ilene is not busy writing advocacy articles about mental health related issues, she is writing a book about her brother. She submits articles to any and all publications like this in the hopes that she gets discovered and someone pays her to write what's on her mind.