In this section:
A diagnosis of schizophrenia, bipolar disorder, or any other severe mental illness usually means a lifetime of care. Most people will need frequent visits to their psychiatrist and/or therapist, some time recieving in-patient treatment at a hospital facility, costly prescription medications, psychotherapy, and various other rehabilitation programs and support services. It is certainly possible to live a full, productive life with a psychiatric disorder, but the costs of getting the care and support you need to do so can become frighteningly immense. Particularly in the United States, people who need psychiatric services and their families are confused and tripped up by a patchwork of largely uncoordinated, unconnected health care services and options.
This section is meant to help you understand the most common choices for insurance coverage, government aid programs for the disabled, and other care options for people with low incomes or no insurance. Included are tips and advice from our own members, who speak about their experiences navigating these problems on our discussion boards (accessible from the schizophrenia.com homepage). These are an excellent resource for finding help and support from people who have been there - we highly recommend you post your questions and concerns.
If you have no insurance coverage - try these steps first:
- Find out if you qualify for SSI or SSDI, the government aid programs for disabled U.S. citizens. (in some cases, non-citizen residents may also be eligible). Qualifying for SSI will automatically make you eligible for most state medicaid programs. If you qualify for SSDI, you will automatically recieve Medicare coverage after 24 months. See the section on SSI/SSDI further down the page, or go directly to the SSI Government Website, which contains an online eligibility screening tool, and lots of information about how to qualify.
- If you do not meet the qualifications for SSI or SSDI, you may still be eligible for Medicaid (see the information section on Medicaid further down the page for more, or check out state-by-state Medicaid eligibility information online)
- Determine if you are eligible for Medicare (for people over 65, and/or people with disabilities). See the section on Medicare further down the page, or go directly to the Medicare Government website. People receiving SSDI for 24 months or longer are automatically eligible for Part A of Medicare.
- If you are a veteran, check with your local VA office about VA medical benefits. See the government website on VA health benefits for more information.
- Look for a Community Mental Health Center, which provide mental health services (may include visits to mental health professionals, psychotherapy, or medications, among other things) on a sliding-scale based on income. They are normally county-run; look in your phonebook, or get in touch with a local Mental Health Association office (look one up using this U.S. database), which will be able to tell you where a CMHC is in your area. Many of our members have gotten a majority of their healthcare services through CMHCs.
Brief Explanations of Major Government Aid Programs:
(Source: Mental Health, Mental Illness, Healthy Aging, a guidebook from the New Hampshire chapter of NAMI):
Supplemental Security (SSI): Provides monthly cash payment to aged, blind, and disabled people who have little or no income. Recipients may be eligible for Medicaid benefits. A handicapped child under age 18 may receive this if the child and parent meet income and resource requirements. Those eligible for SSI may also be eligible for benefits such as housing programs, Medicaid, vocational rehabilitation, and food stamps. Children living at home (in some states) can qualify for an extra benefit under "living arrangements", which is meant to offset some of the costs of providing extra attention and care to a special-needs child living at home.
Disability Benefits (SSDI): Benefits exist for workers who become physically or mentally disabled prior to retirement age. Disability must be severe enough to prohibit substantial work and be expected to last for a year or more. Generally provides a higher income than SSI. Recieving SSDI for 24 months or more automatically qualifies the recipient for Medicare coverage.
Medicaid. Medicaid program helps pay for health care costs for all persons who receive public assistance and for certain persons with low incomes who can't afford the cost of health care. Criteria for this program is the same as Aid to Persons Who Are Totally Dependent (APTD), and persons receiving APTD may also qualify for Medicaid benefits. The Old Age Assistance (OAA) program applies to individuals who are 65 years and older.
Medicare: This federal health insurance program offers hospital insurance coverage (Part A) and medical insurance (Part B) for people 65 and older who qualify for retirement benefits, for workers who have been receiving disability benefits for 24 months or more, and for people who need kidney and dialysis or transplant. There are various plans, with some mental health benefits included (does not include prescriptions). To apply, call 1-800-772-1213.
SCHIP (State Children's Health Insurance Plan): An extension of state Medicaid programs, designed to provide insurance to children who's family income is too high to qualify for Medicaid, but is still below a federal cap. The income eligibility requirements vary by state, but according to the SCHIP government website: "uninsured children under the
age of 19, whose families earn up to $36,200 a year (for a family of
four) are [usually] eligible." See the SCHIP website for more information, and to review your state's eligibility requirements.
Applying for SSI or SSDI - why you want it, and how to get it
According to Dr. E Fuller Torrey, Supplemental Security Insurance (SSI) is "the most important source of financial support for individuals with mental illness" (Surviving Manic Depression, p. 217). National statistics from 2001 estimate that 1/3 of all adult and 1/3 of all child SSI recipients are eligible due to mental disorders (other than mental retardation). For many of our members on schizophrenia.com, these benefits are their primary income, and they way they pay for most of their care.
What do SSI/SSDI beneficiaries recieve?
The checks from SSI and SSDI are not much to speak of. As of January 2005, the
"maximum SSI payment for an eligible individual is
$579 per month and $869 per month for an eligible couple
SSA Government Website). However, some states add extra financial benefits over and above the national standards (look up your state to find out if they supplement the national SSI amount). The financial benefits of SSDI tend to be slightly higher
However, qualifying for SSI/SSDI can make you eligible for many other useful benefit programs such as:
- food stamps
- housing programs
- vocational rehabilitation.
Medicaid eligibility is a major benefit of recieving SSI/SSDI; in all but 11 states, recieving SSI makes you automatically eligible for medicaid, which will cover in-patient services, out-patient services, and some prescription medications for psychiatric disorders. In Connecticut, Hawaii, Illinois, Indiana, Minnesota, Missouri, New Hampshire, North Dakota, Ohio, Oklahoma, and Virginia, the eligibility for Medicaid is more restrictive (see state-by-state Medicaid eligibility information online for eligibility information in these states).
Who is eligible for SSI/SSDI?
Adults over age 18 (SSI):
- Has a disability that prevents "substantial, gainful activity" (this generally means work for pay or profit, either full- or part-time). In 2005, substantial gainful activity was defined as a job that pays more than $830 per month (after any impairment-related work expenses and employment subsidies) for a person with disabilities
- NOTE: earning income may not totally disqualify you, but it will probably reduce your SSI payments. See the SSA Gov website for more details
- Does not have resources that exceed $2000 (if single) or $3000 (if married)
- NOTE: SSA does not count all kinds of income (for example, students have some special income exclusions) or all types of resources (for example, the home you live in, and one car, do not count towards your resources). For more, see the government SSI eligibility page
- If you have resources or savings that exceed the SSI limit, you may want to consider "spending down" - that is, paying for some of your own medical expenses until you fall below the eligibility cutoff. You can also sell excess resources to become eligible - see government information on how to do this
Children under age 18 (SSI):
- has a documented physical/mental disability that results in "marked and severe functional limitations (this needs to be certified by a doctor)
- the above condition is expected to last at least 12 months.
Eligibility for SSDI:
- In general, three types of individuals are eligible for SSDI benefits:
- Disabled insured workers under age 65. Person must have worked prior to illness, long enough to have accumulated social security credits
- Persons disabled since childhood (this must be documented before age 22) who are dependents of a deceased insured parent or a parent entitled to SSDI benefits or retirement benefits.
- Disabled widows or widowers (age 50-60) if the deceased spous was insured under social security.
Tips for applying for SSI/SSDI, and getting the most benefits possible:
A key to qualifying for SSI/SSDI programs is demonstrating restriction of activity, deteriorating personal bhabits, marked impairments, and the inability to perform at a job. Demonstrating this requires proper documentation from mental health professionals. Start with the following three steps:
1) The ill person has seen a physician, psychiatrist, etc., been examined, and found to meet criterion for such a diagnosis.
2) You must be able to communicate with the professional (with mental illness this is next to impossible unless the ill person has filled out a release of information form saying it's OK - see our page on confidentiality issues for more details.).
3) The professional must agree to fill out the forms and write a letter to SSI, and then actually do it
Other tips for establishing eligibility from schizophrenia.com family members:
- Document and make copies of EVERYTHING - every medical form from the doctor. Make copies of medical records - access them yourself if you are the parent of the applicant, or ask the adult applicant to access and make copies of his/her records. Also keep records of all hospitalizations, as well as any out-patient visits and care.
- Participate in research. This will help establish the diagnosis and also help identify the causes of schizophrenia. If it is federally funded, so much the better.
- Maintain copies of all educational acheivements. This can be used to show diminished capacity if the applicant went from A's and B's to D's and F's. Placement in an SED program in school also helps to document the disability. Even if the application does not ask about school performance--volunteer this information. It does ask about special education and accomodations.
- Communicate and follow up with the doctor about filling out the necessary documentation forms ON TIME and CORRECTLY. One social-security advocate indicated that physician failure to complete the SSA documents on time was the number one reason for denial.
- Take your time - these forms are tricky. Write out your answers with pencil on back-up copies before committing them to ink. If you have access to a case manager or a social worker, get help filling out the forms correctly. This will speed up the approval process (which generally takes an average of 3-6 months), and reduce the chance of a denial.
- Be consistent with your documents - make sure that the dates and answers on your form and on the doctor's form match up.
- Answer the questions based on your child/loved one's worst-case scenarios. "It's tempting to forget what your child was like when he was completely out of his mind...ALWAYS answer the questions as if they were psychotic" (schizophrenia.com family member). The goal of the social security employees is to save the government money by denying claims on just about any basis possible. Your goal is to make sure you or your loved one has the financial support they need.
- If your adult child lives at home, charge him/her "rent". It can result in a higher SSI benefit.
Getting started with the application:
- Call the SSA Toll-free hotline:
- Apply online at the SSA website.
- Contact your local SSA office for assistance and/or to pick up a paper application.
What to do if your SSI/SSDI Application is Denied:
Apply again. And then apply again. According to NAMI information about SSI, "two out of three persons who apply for disability benefits are initially rejected." Your chances of being approved go up with each appeal.
More information and resources for SSI/SSDI:
Medicare and Medicaid:
Medicaid is one of the largest federal aid programs providing health services to low-income and disabled people, and it is indispensable to a majority of people with mental illness. According to a 2004 article in Psychiatric Times, "65% of all people with schizophrenia and one-fourth of all people with severe depression are covered by Medicaid" (Psychiatric Times, April 2004).
Although it is a federally-funded program, each state establishes their own eligibility requirements and benefits packages (which are only required to fall within very broad federal guidelines). This means that someone receiving Medicaid coverage is guaranteed a basic package of services (including basic doctor visits, hospital care, lab
and x-ray services, family planning services and special health screening for children, but may or may not have certain "optional" services, such as prescription drug benefits. This can be a major problem for people with mental illnesses, who depend on prescription medications to control their symptoms and maintain functionality.
For people who do not have prescription benefits, there are prescription-assistance programs (offered directly by the drug manufacturers) that can help you access your medications. See your options if you have insurance (such as Medicaid) but still cannot afford your prescriptions)
Who is eligible for Medicaid?
- Anyone receiving SSI is automatically eligible for Medicaid.
- Look up your state Medicaid requirements to determine if you are eligible. Some states have more flexible eligibility for Medicaid than for SSI, and you may fall into special state-established categories such as "medically needy" (people with exceptionally high medical bills).
- Children who are institutionalized for over 30 days will generally qualify for Medicaid, because after this period of time "the income and resources of the child’s parents are no longer counted in determining the Medicaid eligibility of the child" (Source: www.healthassistancepartnership.org)
- If you apply and are accepted to your state Medicaid program, you can receive retroactive compensation for medical services up to three months prior to your Medicaid enrollment, if you would have still met the eligibility requirements at that time. (Source: www.healthassistancepartnership.org)
More resources/information about Medicaid:
Medicare is generally for people over age 65, but disabled workers who have been receiving SSDI for over 24 months are also eligible for coverage. Unlike Medicaid, it is a federally-standardized program; recipients have the same benefits regardless of where they live.
What do I get with Medicare?
The original Medicare program is divided into two sections: Part A and Part B.
Part A covers inpatient hospital services, including in-patient mental health services and hospitalizations.
Part B covers outpatient services such as doctor/psychiatrist/psychologist visits, lab tests, and partial hospitalizations
Not covered by Medicare: meals/transportation to and from mental health appointments or treatments, outside support groups, vocational rehabilitation, prescription medications.
- NOTE: Beginning in January 2006, Medicare will add a prescription drug benefit. This will be available to anyone enrolled in Part A and/or Part B of the original Medicare program. Signing up for the drug benefit will raise your montly premiums (the government website quoted an increase of about $37), and you will have a yearly $250 deductible. Learn more about the Medicare prescription drug benefit here.
- More resources for Medicare:
Managed Care Plans and Mental Health Benefits
With the significant increase of managed-care health insurance plans, either bought independently or included in an employment benefits package, it is important to look at how managed-care medicine might impact people who need care for mental disorders.
One potential problem that people with psychiatric disorders may encounter under managed-care benefits is the restriction on which practitioners they are allowed to see. The patient-doctor relationship is an essential part of good treatment and full recovery for someone with a mental illness; this makes it especially important that mental health consumers have the freedom to choose a practitioner whom they like and trust. Someone who changes from one health insurance plan to another may suddenly find that they are forced to change doctors.
Another problem with managed care is that any appointment with a specialist (and this includes a psychiatrist) must be made with a referral from your primary care physicians. Primary care physicians are not trained as mental illness experts, and they might not recognize the emerging symptoms of a mental illness and make a timely referral. However, seeing a psychiatrist is the best way to make a quick, correct diagnosis. Moreover, some primary care physicians are under pressure from the insurance plan to make as few referrals as possible (this ends up costing the insurance group less).
What can you do if you are purchasing managed care?
If you have a choice between several plans, examine each individual policy carefully for their mental health benefits and coverage, and make a choice that offers the most comprehensive coverage for your needs. Below are some important points to know about an insurance policy:
- What are the maximum number of outpatient visits per year to a psychiatrist?
- What is the procedure for applying for additional out-patient visits, if needed?
- What is the co-pay on mental health services (outpatient visits, psychiatric hospitalization, prescription drugs, etc).
- Does the plan exclude psychiatric diagnoses, or do they have significantly higher co-pays for mental health treatments?
- What doctors and hospitals are "in-network" (that is, covered under the insurance policy). If there is a specific treatment facility convenient to you, or you already have a psychiatrist you trust, find out if they are included in the plan network.
- What happens if you are forced to go "out-of-network" in an emergency, either for in-patient or out-patient services? Sometimes during a crisis, there is not time to go to your regular facility, and it is important to know whether your insurance policy has contingency funds to cover out-of-network care. It is also important to know how to make claims for these funds.
- What are the time limits on hospital stays? Is there a maximum dollar amount for hosital care?
- What benefits are offered for partial hospitalizations?
- What prescription drugs are covered? Not all insurance plans will include the atypical antipsychotic drugs in their prescription benefits, because they are significantly more expensive. However, because mental illnesses affect everyone so individually, it can be very important for doctors and patients to have a range of affordable medication options to choose from.
- Are "off-label" prescriptions also covered? (An "off-label" prescription is when your doctor prescribes you a medication for a condition it is not primarily used to treat. For example, because of the similarities between schizophrenia and bipolar disorder, some of the medications for one disease can be used to treat the symptoms of the other. However, not all schizophrenia medications are FDA approved for bipolar treatment, and vice-versa).
- Does the plan cover any alternative services or therapies (for example, psychosocial treatments, talk therapy, cognitive-behavioral therapy, vocational rehabilitation, etc)? These can be extremely helpful for many people with severe mental illnesses, especially when looking beyond symptom management and aiming towards a return to functionality and recovery.