WESTBROOK — So here we go again – the Maine Department of Health and Human Services is proposing regressive changes that will decrease community supports for individuals with a mental illness. The DHHS wants to continue MaineCare coverage of Section 17 community support services only for those with a diagnosis of schizophrenia or schizoaffective disorder. How many people does that leave out who are currently receiving services?

There are a few problems with this reckless cessation of services for those living with a mental illness.

The timing is questionable: Those receiving services were informed of the change March 8 and told that it would take effect April 8. Clinicians may appeal on behalf of people at risk of homelessness or criminal justice involvement or who have a reported history of hospitalization. Now who do you suppose is going to help get that appeal organized and carried out within this 30-day window?

What’s more, the diagnosis of a mental illness is still more of an art than a science. The field studies of the latest version of the American Psychiatric Association’s Diagnostic and Statistical Manual, which is used to diagnose mental illness in the U.S., show inter-rater reliability ratings of concern.

In other words: If two clinicians use the manual to help diagnose the same patient, it doesn’t mean that they’ll come up with the same diagnosis – even if they see the same symptoms. (For further information, read “The DSM-5 Field Trials: Inter-Rater Reliability Ratings Take a Nose Dive,” a blog post by Jack Carney, DSW.)

Our son has had variable diagnoses. How could that be? Symptoms can overlap between one diagnosis and another; the differences in doctors’ experience may also have some bearing on their diagnosis of a patient. Yet we now have in Maine a proposed change that will eliminate community support services for those not fitting into these two specific diagnoses: either schizophrenia or schizoaffective disorder.

If you check out the DHHS’ Maine Suicide Prevention Program website, listed under “personal risk factors” for suicide are mental illnesses and psychiatric conditions such as depression, anxiety, bipolar disorder, conduct disorder and anxiety disorder. So it looks like those with the above diagnoses who are at risk of suicide will be left out, too, with the proposed change to Section 17.

If the department’s decisions about Section 17 coverage are driven by money or the assumption that case management is baby-sitting, please read on.

Case management is a proactive service, not an enabling one. Case management empowers a person who feels disenfranchised or adrift to participate more, rather than enabling him or her to participate less.

My sister was diagnosed with a mental illness in her 20s but did not get a case manager until much later in her life. She told me clearly many times what a difference her case manager made for her. “She’s on my side … she will represent my voice. I can count on her,” my sister said.

Those who have loved someone who’s been stricken with a mental illness know the value and importance that a case manager can have in their loved one’s life. When you develop a major mental illness, life as you knew it crumbles. As my son so clearly said, “Mom, this illness erodes you.”

As much as members of your family love you, they are not always the ones who are able to help you move forward to more stable mental health, independence and recovery. It’s also true that some people who are diagnosed with a mental illness have no network of support.

When you are feeling fragile from the impact of a mental illness, it can be overwhelming and intimidating to see a psychiatrist on your own. Having a case manager to take you to your appointment and to be there as your advocate is huge.

Now the DHHS is going to take away your case management services unless you fit into two discrete diagnoses or unless your clinician successfully appeals on your behalf. What kind of care is that?

Supporters of the change say that one reason for limiting case manager access is that it may be creating dependency. I say to that: Baloney!

Just try to imagine what it would be like if your young adult daughter or son – full of excitement and promise for their future – were sidelined by mental illness. When that happened to our son, his exuberance, his confidence and his aptitudes and skills got sidelined as well.

One of the essential services that is helping him move forward is case management, covered two times a month under MaineCare. These twice-monthly services pay off in spades in return.

If what I say resonates with you, I encourage you to use your voice to help stop this careless change in Section 17.

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