Serious Mental Illness and the ACA:  No Relief for the Weary

by Pippa Abston, M.D.

As a pediatrician whose patients and their families sometimes develop serious mental illnesses (SMI), and as a family member and caregiver, I can tell you that the word “serious” is a euphemism, a polite understatement.  I have a friend with stage IV cancer who has received life-saving treatment for many years—she is able to work, care for her family, and enjoy her life despite the fatigue and side effects.  If she were to stop treatment she would likely die quickly.  Her illness is serious.  Treated, illnesses like schizophrenia and bipolar with psychosis settle to the level of serious.  Untreated, these brain illnesses are better called devastating or catastrophic.   Those who do not die wind up far too often in prisons unprepared to care for them or homeless, living—if one can call it living—under bridges and in doorways.  

Mental illness care has long been the red-headed stepchild of medicine—barely funded when required by law, and far too often, not even then.  For decades, advocates have worked towards parity, the equal treatment of brain illnesses and other body illnesses by insurance, only to witness seemingly solid legislation morph into a sieve of loopholes.  Anyone who has watched can testify to the creative genius of private insurers, against whom no legal barrier to patient abuse has so far succeeded.  Prohibit annual or lifetime payment caps and they limit the number of visits allowed.  Require inpatient hospital coverage and see new categories like “partial hospitalization” that don’t count.  Require outpatient coverage and get provider networks at payment rates so low hardly any doctors sign up.  Will the Affordable Care Act (ACA) along with the Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008 do any better?

Some with SMI who have not been able to get private insurance due to their pre-existing condition may now get private policies.  Those under 26 can now stay on parent policies—but will these newly covered persons have access to care?  Having an insurance card is not at all the same thing as being able to get treatment.  At the onset of illness, many with SMI already had private insurance that failed to meet their needs.  

Under the recently released final rules for parity, effective for plan years that begin after July 1, 2014, most private insurances (except for grandfathered small group policies) will have to provide some mental illness coverage.  The exact services covered will vary between states, because of the way the Department of Health and Human Services interpreted the ACA—Essential Health Benefits depend on prior insurance offerings in each state. The final parity rules removed an earlier stipulation for insurers to use clinically accepted standards of care for mental illness treatment authorization. If a treatment is recommended by national experts and advised by your own doctor, the insurer does not have to use the same guidelines and can deny payment.  Although plans are supposed to use similar methods to develop provider panels for psychiatric and other medical care, the parity rule discussion says disparate results in the composition of those panels don’t prove there is a problem.  So if your plan does not include sufficient psychiatrists on the panel accepting new patients (a common issue) but has plenty of other types of specialists, you may not have grounds to protest if the insurer can figure out an excuse.  If insurers are only providing certain elements of mental illness treatment in order to satisfy the ACA, they don’t also have to meet the full requirements of parity otherwise.  

There may be some relief to states and patients for coverage of court-ordered mental illness treatment, because insurances to which the parity rules apply can’t restrict such coverage if they don’t restrict it for other court ordered medical services.  For example, if a court-ordered blood transfusion for a child would be covered, then services provided during a court-ordered psychiatric hold should be covered as well. 

The point-of-service cost-sharing barriers are substantial under the ACA.  For those with lower incomes who don’t qualify for Medicaid and have subsidized plans, a $30 co-pay might as well be $300 if they don’t have it.  A $2,000 deductible or out of pocket limit?  Unimaginably out of reach.  People affected by SMI are more likely to have lower incomes and thus likely to forgo necessary care at a lower level of up-front cost. 

For long standing SMI, partly because treatment barriers and gaps have contributed to loss of function, public insurance is common—either Medicaid, for those with SSI Disability, or Medicare for those with SSDI.  I do not see the kind of changes in either of these programs that would be needed to prevent care gaps.  The “donut hole” for Medicare prescription coverage is closing, but there remains substantial out of pocket cost.  There is no parity requirement for payment of psychiatrists in Medicare and payment is low compared to other outpatient services.  Consequently, finding a psychiatrist who accepts Medicare isn’t easy.  In my city, the only option is the county Mental Health Center, already overloaded.

Medicaid appears to be affected by parity only if it is administered through Managed Care Organizations or Alternative Benefit Plans.  The Medicaid Expansion, in states that adopt it, will add some with SMI who have not been able to get disability benefits.  The main barriers to care for those with Medicaid are funding, generally severely inadequate at the state level, and commitment laws that hinder timely treatment of SMI when the patient is sick enough to be unaware of the illness (anosognosia).  Staffing is limited, wait times are lengthy, and necessary community supports are minimal to absent. There is no move towards building a functional SMI care infrastructure in the ACA.  If care is affordable but not available, patients are left behind just the same.

Although Medicaid pays for residential care of those with intellectual disabilities, there is an “IMD exclusion” prohibiting federal matching funds for care in a psychiatric hospital.  This has helped cause deteriorating service quality at state hospitals and made it appear cheaper for states to put those with SMI in jail than to hospitalize them. 

Because milder mental illnesses are more common and seem to garner more popular sympathy than true SMI, I am also concerned about wise use of scarce resources. The ACA does nothing to ensure that priority will be given to those most severely affected.  The spectrum of mental illness is broad, just as for other medical illness.  It is being absurdly stretched to include non-illness ordinary frustrations of life so providers can be paid for their preferred “patients.”  True mental illnesses are brain disorders.  If we had known more about them when we began categorizing illnesses, they would have been placed in neurology instead of psychiatry, the same as Alzheimer’s disease and Parkinson’s. 

I would not begrudge a person with a mild version of a mental illness appropriate treatment any more than I would a person with a mild asthma flare-up.  Mild problems can become serious without good care.  At the same time, I would not leave a person in my waiting room gasping for breath to see one with a head cold, and that is what we are doing right now for mental illnesses.  I am weary of seeing tragic headlines about those we have failed, when I know we already have the knowledge and tools to do better.

Although we have no cure for SMI, we most certainly do have multiple proven interventions that can, most of the time, bring those affected to the level of the merely seriously ill.  Treatment reduces the risk of relapse and allows most people to have meaningful lives in their communities, despite being ill.  Just as with cancer, SMI can sometimes worsen even during treatment so that the care plan needs to be adjusted—this can only happen quickly when care is continuous and frequent enough to catch the early signs of trouble.  Each relapse not treated quickly and skillfully may cause cumulative, permanent, unrepairable damage to the brain.  Treatment gaps in a system full of cost and access barriers can mean death.  Any reform of health care that fails to address the needs of people with SMI, including their critical need for continuous care with no loopholes or gaps, is a sham, a travesty, and a parody of reform.

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Tag lines: Mental health parity; Affordable Care Act; access to care; costs of care; serious mental illness; schizophrenia; bipolar disorder; brain illness; Medicare; Medicaid.