NSSC is a nonpartisan alliance of diverse individuals and organizations who are uniting to ensure that mental illness, health, and criminal justice systems count those with SMI, SED, and their families in all federal, state, and local policy reforms. We are voices for the 10 million adults and 7 million children living with and dying too young from serious mental illness.
March 22, 2019
The Honorable Fred Upton
2183 Rayburn House Office Building
Washington, DC 20515
Dear Mr. Upton,
Our coalition is approaching you today in an effort to persuade you to introduce a bill which would clarify the cost of untreated and under treated serious mental illness (SMI) in America. We refer to this as “The Cost of Not Caring.” This bill would ask our federal, state and local governments to provide a report detailing the exact amount of monies allotted each fiscal year to address the effects of untreated serious mental illness on our society.
Our coalition is currently attempting to quantify the personal cost to our families related to caring for a loved one with a serious mental illness. Through a conjoined effort, we are calculating the cost of items such as out of pocket mental health care costs -- i.e., lost wages, psychiatric services required for caregivers and family members, homes lost to second and third mortgages to gain treatment or to pay legal fees, and 401Ks/Retirement Accounts that have been exhausted because of the need to secure help for a loved one with SMI. These are just some examples of overlooked expenses that we are personally left to deal with when we are responsible for a person with a serious mental illness who is not receiving proper care.
However, we cannot assign a dollar amount to unquantifiable costs -- such as, the marriages that have been destroyed, the family relationships that have fallen apart under the stress, the careers destroyed and jobs lost, the physical injuries or deaths of family members and others inflicted by those with SMI--and the dreams and futures of our loved ones that have been shattered when serious mental illness presents itself. These expenses we understand all too well.
We need your help to address the other expenses; the ones that are affecting our nation. We would like you to introduce a bill that would require an account of the actual total expense that untreated mental illness has on our society as a whole. This is going to be a formidable task, but one that must be accomplished. We need to determine exactly what the cost of not caring is having on our society. We hope that having an accountable system of recorded expenditures will help our government finally understand that being proactive, rather than reactive in the treatment of serious mental illnesses, not only makes more sense on a humanitarian level, but also on a financial level.
Particular areas of interest that this bill should address listed as sample costs -- at federal, state, and local level:
1. Cost of physical illnesses. Please bear in mind that 75% of persons with SMI have at least one chronic physical illness, 50% have two, and 33% have 3 or more.
2. Cost of homelessness with the focus on persons with untreated SMI, including costs to courts, police, prisons, judicial systems, and medical systems.
3. Cost of not allowing for AOT (Assisted Outpatient Treatment) to treat those who suffer from serious mental illness and anosognosia living with family, including contact with police, crisis services, and courts when we cannot get help for our loved ones. Involvement of treatment teams, in communities where those resources even exist, who continue to engage with patients are often necessary several times a week because patients are in crisis, but there is no improvement when patients are refusing medication.
4. Cost of SMI for patients who go through revolving doors--in and out of hospitals and emergency rooms because they are not treated early enough and/or not kept long enough to stabilize them.
5. Cost of criminal justice involvement among persons with SMI with and without treatment.
6. Cost of disability payments.
7. Cost of lost income.
8. Cost to family members who bear much of the emotional and financial burden of these illnesses.
9. Cost of healthcare for co-morbid conditions such as substance use disorders (SUD’s).
10. Cost of the loss of productivity due to premature death or those with SMI who are institutionalized, incarcerated, or homeless.
We look forward to hearing from you and hope that you will accept this challenge. The time for us to quantify these costs is now so we can have a discussion, to detail its finer points, and move forward with a strategic plan that includes accountability for “The Cost of Not Caring.”
National Shattering Silence Coalition
Full disclosure: Dede Ranahan is member of the NSSC Steering Committee.