SSI stands for Supplemental Security Income. It is a monthly Federal stipend provided by the United States Social Security Administration (SSA) to those who qualify. You can also find out about SSI from the Social Security Administration website, but this article serves as overview with some editorial comments.

Disability benefits can be granted to those with either physical disabilities or mental illness, or both. In order to qualify, Social Security has to verify that a person legitimately has a serious disability which prevents them from financially supporting themselves.  SSI is distinct from SSDI.  SSDI stands for Social Security Disability Income and that is for those who have an employment history, but at some point were not able to continue working.  SSI is for those who have not yet worked, nor paid income taxes. A person who qualifies for SSI right at the age of 18 is an individual who has credible proof that their disability began as a minor.

The person seeking SSI disability benefits can apply directly or someone else like a caretaker or family member can submit an application on their behalf.  In fact, there are people with serious mental illness (SMI) who have no insight into their illness and don’t even know about this benefit available to them.  It often takes a long time to get approval and it is common for people to be denied the benefits. They can choose to persevere with an appeals process; if eventually approved, the person may receive benefits retro-actively from the date they first sent in the application.  Once a person has the SSI benefits, there will be periodic questionnaires from SSA to confirm if the person still needs SSI. Many are permanently disabled, so they will need SSI indefinitely.  There are also ways in which a beneficiary may unwittingly have their benefits cancelled, because of accounting errors or lack of timely communication with the Social Security Administration.

The amount of money a person on SSI receives varies depending on their living accommodations. Someone who lives in a licensed Board and Care home for those with serious mental illness receives the maximum benefit which is currently about $1,200.00 per month.  Of that amount, about $100.00 is called PNI (Personal Needs Income). This is an allowance which the beneficiary can use as they like for anything.  However, the entire amount of the benefits, minus the PNI part, must go towards food and shelter only.  The licensed Board and Cares will accept the full SSI benefit as payment in full.  Many Board and Cares struggle to make ends meet because the SSI benefit is so modest.  In California, where the cost of living is so high, the Board and Cares need roughly twice as much per month per resident and many have closed over the years.  Instead of subsisting on $35 dollars per day, most facilities of these types or recovery from homeless programs spend $100 per day. That is another topic to delve into in a separate article. At the time of this writing, Governor Gavin Newsom is allocating extra California state funds to help keep the Board and Cares from closing.  By doing that, they can keep thousands more from sinking into homelessness, which actually costs the tax payers even more in emergency services.

It’s an important point to make for those receiving SSI benefits in how the funds must to be used. If a caretaker is taking responsibility to disburse the funds, they are called a Representative Payee. This is a common practice because many with serious mental illness are not able to handle their own finances. The Rep Payee opens a banking account in the name of the beneficiary and they can only spend the funds on food and housing.  The funds barely cover food and rent, so it is not common for any Rep Payee or beneficiary to spend the funds on anything else except these essentials for survival.

In fact, it is sadly laughable when SSA sends out financial reconciliation work sheets, wanting to know if the funds were spent for anything else like clothing, “entertainment,” education or medical bills. When a recipient lives in a non-licensed facility or home, the benefits are reduced significantly, such as around $650 per month.

If, however, an SSI recipient has a financial benefactor who gifts them money for any other purpose, those monies are considered a “resource” and they would be deducted directly from future benefits, should SSA discover that this has taken place.  Here is one draconian example of how that could play out:  Let us say that someone lives in an apartment that cost $650 per month. That could be the total SSI benefit going toward housing.  If a relative gives the beneficiary an additional $400 per month for food, that $400 would be deducted from the $650 SSI allowance and the recipient would only receive $250.00 if Social Security should find out that someone is receiving additional funds to live on. This is an example of how a person could then not even be able to afford housing or the very basics in survival if someone provides the recipient with additional funds, even for essentials. The person is then bound to abject poverty in order to receive SSI.

When a person receives SSI benefits, they automatically get Medicaid (or Medi-Cal in California). This is certainly helpful and needed, although Medicaid and Medi-Cal are not comprehensive insurance policies by any stretch of the imagination.  For example, there is something called the IMD Exclusion, which prevents Medicaid/ Medi-Cal from paying for psychiatric hospitalizations in a facility with more than 16 beds. This is just one example of how the seriously mentally ill are discriminated against. One of the medical services they need the most is psychiatric care.

One way in which a person’s SSI benefits can be cancelled is if the recipient has more than $2,000.00 to their name, such as in a banking account. Let’s just say that somehow, someway a person was able to save some of the funds they receive. Perhaps they don’t use their PNI money and it builds in their banking account.  This could be one way that a person ends up with more than $2,000.00 to their name and Social Security would punish a person for saving money to the extent that their balance exceeded this limit.  That said, a person receiving SSI could work in theory, like a part-time job.  Whatever the person receives through work is deducted from their SSI benefits, so it is obvious that a person cannot make much money without losing part or all of their benefits. Many people fully qualify for SSI, but their family may not want them to suffer under the strict and discriminatory policies mandated by the Social Security Administration in order to receive those funds.

One of the reasons family members create Special Needs Trusts for their disabled loved one is specifically so that no assets are in the name of the beneficiary, rather in the name of the Trust, so that any inheritance will not jeopardize the meager SSI and Medicaid benefits allowed.


Kartar Diamond is a Mental Illness Advocate and author of Noah’s Schizophrenia: A Mother’s Search for Truth.