In This Chapter
Checking out the costs of care
Tapping into private insurance
Taking advantage of public programs
Making the rules work to your benefit
Exploring other options: VA benefits, college mental health care, and clinical trials
Planning for the future
Unless you’re independently wealthy — and maybe even then — the costs of treating schizophrenia (or any other chronic illness) over time will stagger you. The good news is that, with help from your insurance company and government programs, the whole cost won’t fall on you or your loved one. The bad news is that you’ll need to be persistent and patient to receive the government benefits that are out there — and will likely have to pitch in to cover the gaps in what’s available.
Ideally, you and your loved one will find a social worker, case manager, or other mental-health advocate to help you navigate the murky waters of financing mental health care, but much of the burden of finding and funding care falls on the person with schizophrenia or, more often, his family.
In this chapter, we give you a primer of where to look and who to ask for additional information on financial issues related to the care and treatment of people with schizophrenia, to make navigating these waters a little easier.
Paying for Care
When you consider the cost of treatment for schizophrenia, you may be thinking, “That’s what insurance is for,” but even private insurance has pitfalls when it comes to funding mental-health treatment, and many people with schizophrenia have no insurance at all.
The complicated world of mental healthcare
Mental healthcare, like general medical care in the United States today, is characterized by a byzantine labyrinth of treatment facilities, private and public programs, charities, and religious and volunteer organizations that include
Hospitals and outpatient care
Primary care (family physicians) and specialty care (such as psychiatrists, therapists, and social workers)
Health, rehabilitative, and support services
The mental healthcare system is fragmented among different programs, each supported by different sources of funding, and different eligibility and application requirements that may require endless paperwork and the patience of Job to complete. (Keep in mind that this is fragmentation is no different than that encountered by people taking care of older parents with chronic health problems. Because of the diverse payers for different types of care, a family caregiver may be coordinating care among five different specialty doctors, a hospital, home health aides, and a hospice program.) The patchwork maze of healthcare in America can be dizzying to anyone and mental healthcare is no different except that the person requiring care may be more mentally incapacitated during an acute crisis.
Programs often have lengthy waiting lists. And these programs usually don’t communicate with each other or maintain continuity of care for the consumer. Unfortunately, when it comes to mental health, it’s safe to say that there is no such thing as one-stop shopping. If only there was a mental-health dollar store that was open 24/7. And like cancer, diabetes, or heart disease, the cost of specialized care for schizophrenia is exorbitant and can easily devour the savings of most ordinary families. In addition, family caregivers often lose time at work and may even lose their jobs because of their personal stake in being there for their loved one whenever needed — which may occur often, and which is generally unpredictable.
Because resources vary from one community to the next, there’s no simple handbook or Web site that enables people to easily learn the “system” that they’ll need to rely upon. Moreover, because of changing laws and regulations, the system is often in flux. Navigating the system can be particularly challenging for people who aren’t sophisticated in dealing with bureaucracies or for whom the system poses language or cultural barriers. Patients, friends, and families usually find out about affordable, accessible, and high-quality resources in their respective communities simply by talking to each other and to savvy clinicians.
The stigma, discrimination, and lack of understanding associated with mental disorders historically have made mental-health treatment pretty unpopular among taxpayers. Over the last 50 years, states have drastically reduced the number of state-supported psychiatric beds (transferring costs to national and local governments) to the point where there are even waiting lists for the relatively small number of individuals who require long-term supervised residential treatment.
Often, because of gaps in community care, individuals wind up in more costly skilled nursing facilities, jails, and homeless shelters. Based on this situation, many mental-health advocates and legislators have reframed the question from “How can we afford to pay for mental healthcare?” to “How can we afford not to?”
An estimated 47 million Americans have no insurance, and many fall into the lower socioeconomic brackets. Because of this, many people avoid or simply can’t afford necessary care, which leads to more costly and complex problems down the road.
Finding adequate treatment is only the first step in living with schizophrenia (and one we discuss in detail in Chapters 5 and 6). The second and often more difficult step is finding the resources to pay for it. A poll conducted by the American Psychological Association and Harris Interactive in 2008 reported that 42 percent of those queried said that cost is the leading factor that discourages people from seeking out mental-health services.
The cost of treatment poses a formidable barrier for anyone with a chronic illness. Many middle-class families experience extraordinary financial strains trying to provide help and pay for care for their relatives over the long term — especially when the individual isn’t able to support himself or has no health insurance or disability insurance.
In the following sections, we look at your options for paying for care for your loved one.
Although they’re a complement to — rather than a substitute for — professional care and treatment, self-help and support groups (see Chapter 9) can be invaluable in providing information and support — and they’re usually free! A self-help group may also help you better understand how to take advantage of the financial resources available to your loved one — members generally are happy to share information on navigating the mental healthcare system.
Private insurance
If your loved one is fortunate enough to have some type of private health insurance, you need to understand its provisions for coverage of behavioral healthcare (a term commonly used to include mental illness and substance-abuse treatment). Here are some of the ways in which private health insurance plans vary:
Which practitioners your loved one is allowed to see: If your loved one’s insurance plan is a point-of-service (POS) plan, he’ll be able to go to any practitioner he wants. If his plan is a health maintenance organization (HMO) or preferred provider organization (PPO), he’ll have to choose providers from a preapproved list.
Out-of-pocket costs of seeing an out-of-network physician: If your loved one chooses to see someone who isn’t on her HMO or PPO preapproved list, she may have to pay a large percentage of the cost herself. These percentages vary from one provider to the next.
Whether your loved one must have a referral from a primary-care doctor or case manager before he sees a psychiatric specialist: In general, HMOs require referrals in order to see specialists, whereas PPOs do not. These individuals are often called “gatekeepers” because they try to minimize costs by preventing unnecessary or more expensive than necessary care. Some insurers have a person see the case manager before he is referred to a specialist; other times, this is handled over the phone.
The number and/or frequency of outpatient visits and/or days of hospitalization allowed yearly or in a lifetime: When a person is facing a chronic illness like schizophrenia, those limits can be reached quickly.
The maximum dollar limits on the amount of lifetime coverage: Again, chronic illnesses are costly, and although it may seem impossible that your loved one would ever reach the limit, it can actually happen quite quickly if your loved one needs inpatient care on a repeated basis.
Whether the costs of your loved one’s care will be fully paid for:
Some insurance plans cover 100 percent of the cost of care. Most plans require the patient to pay deductibles, co-payments, or other types of out-of-pocket costs.
Whether hospitals on the plan are conveniently located and offer high-quality mental healthcare: Just as your loved one’s plan may have a list of preapproved doctors, only certain hospitals may be covered on the plan. You need to find out which hospitals are covered, and whether they offer the kind of care your loved one may need.
Whether psychiatric emergency care is covered and how: If you go to an emergency room and your loved one isn’t considered to be an immediate danger to himself or others, you may be sent away and referred to outpatient care.
Your insurer may define a “psychiatric emergency” according to an overly strict standard. If this happens, you may need to provide explicit evidence that your loved one is dangerous to herself of others. It’s always helpful to find an ally in a physician who understands the illness and is willing to go to bat for your loved one.
Whether medications are paid for under the plan: Not all plans cover all medications. Some have a list of medications that are preferred, and if your loved one needs to take a medication not on that list, he may have to pay more than he would otherwise. (See Chapter 8 for more information on medication formularies and prescription assistance plans.)
Talk to your loved one’s psychiatrist about which medications are approved by his insurance plan. She may be able to prescribe a medication that’s just as effective and is covered by his insurance.
The age at which offspring are no longer considered dependents under family policies: Depending on your insurer and the laws of the state where you reside, the age at which a full-time student is no longer covered under his parents insurance varies.
Coverage of preexisting mental conditions: If your loved one was previously treated for a mental disorder and you change insurers, you may find that your new insurer is unwilling to cover a preexisting condition.
In general, many insurers deny claims because they are filed with insufficient information or documentation, or improper codes provided by the practitioner. This means that your loved one or you may need to take on the task of appealing denials within certain fixed periods of time. Because this entails keeping prior documentation, communicating with the healthcare provider, and responding within a timely manner, it may be a burden that you suggest helping your loved one with.
When you’re selecting a plan, you need to weigh the pros and cons of each in relation to the needs and resources of your family. These are also important considerations to look into whenever anyone changes jobs or seeks new employment. Choose plans that provide mental-health coverage (just in case you or someone in your family becomes one of the 25 percent of Americans suffer from a diagnosable mental disorder each year). Opt for plans that allow you to choose your own practitioners if you can afford it. On the other hand, HMOs may simplify the burden of filing claims.
There are often unfair disparities in coverage for mental, behavioral, and emotional problems as compared to physical health problems. For example, a plan can set limits for mental healthcare coverage at $50,000 and set limits for physical health at 20 times that amount.
Mental-health parity is a legislative reform being enacted in many states and at the federal level that tries to restore parity (equality) so insurance benefits for mental and physical illnesses are covered equally. The federal law enacted in 1998 is imperfect — it has too many exceptions. State parity laws have attempted to close the gaps, but these laws vary from state to state. Some of the goals of mental health parity include the following:
A single deductible for both physical and mental illness ‘ Equal out-of-pocket costs and/or co-payments ‘ No yearly or lifetime limits to the number of visits or dollars paid
Remember that even if you aren’t concerned about health parity now, you never know when you or someone in your family will need mental healthcare. When you advocate for mental-health parity (and we hope you will), use this factoid: A study of health parity for federal workers found that it increased employer costs by less than 0.5 percent.
To find out about your specific mental-health benefits and coverage, check with either the human resources office of your employer, a union official if you belong to a union, or directly with your insurer. If your health plan is only subject to federal law (for example, if you’re a federal employee), you can get more information from the Department of Labor by calling 866-275-7922.
If you feel that you or your loved one has been unfairly denied coverage under the terms of the insurer’s contract, contact the customer service department of your insurer (preferably, in writing so you have a paper trail to document your efforts). If the insurer is still unresponsive, you can file an appeal with your state insurance commissioner. If you still get no help, contact your state and federal legislators, your state attorney general, or a private attorney or legal advocate.
Don’t be completely discouraged by the costs of private mental healthcare. Whether your loved one has comprehensive insurance or not, there are usually ways to obtain the care she needs. You may be able to negotiate payments with a doctor or program so you can afford it. Even if they aren’t advertised or mentioned, always inquire about sliding-fee scales or reduced fees. Don’t be shy — it never hurts to ask!
Although a small proportion of people pay for their own insurance, health insurance is often unaffordable except through employer-paid coverage. Premiums for employer-sponsored health insurance have increased four times faster than employee earnings since 2000. At a time when health-insurance costs are rapidly escalating and the number of uninsured is growing, this means that many individuals and families are being priced out of necessary mental-health treatment.
Employee assistance programs (EAPs) can be a valuable resource for people who are employed. These workplace benefit programs, which are often free, provide confidential evaluation, treatment, and referral for individuals who may have personal, mental-health, financial, legal, or substance-abuse problems that might otherwise adversely affect their employment. EAPs are often limited in terms of the number of sessions made available to the employee, however. Check with your employer to find out whether you have an EAP and how to take advantage of it.
Public services for the uninsured or underinsured
Many publicly funded treatment and support programs operate on a sliding scale based on an individual’s ability to pay. These programs are often operated directly by local government or funded by contracts or grants awarded to private organizations that are designed to serve individuals either with limited income or no income at all. They can be supported by
local tax levies, state funds, federal block grants (grants that allocate money to states on the basis of some formula set by the federal government), or some combination thereof.
To find out about programs and their respective eligibility requirements, contact your city or county mental-health department. The available programs may include:
State-supported outpatient treatment programs
Community mental-health centers
Nonprofit mental-health associations
ACT or other case management programs (see Chapter 9)
Self-help or peer-support programs
Psychosocial rehabilitation programs
Family psychoeducation programs
Substance abuse treatment and recovery programs
Clubhouses
Consumer-operated service programs
Often, local affiliates of the National Alliance for Mental Illness (NAMI) provide consumer or family peer support services and are a valuable resource for information and referral. To find out more, go to www.nami. org or call 800-950-6264.
When someone receives treatment at a clinic, they may be assigned to see whomever is there on the day of their appointment. Try to encourage your loved one to request appointments with one clinician who will see him regularly and get to know him, helping providing continuity in care. If the person is going on vacation, have him ask the clinician to brief whomever will be covering on whatever issues are likely to arise.
Veterans’ benefits
If your loved one served on active military duty, he may qualify for healthcare benefits provided by the Veterans Health Administration (VHA). The VHA provides inpatient psychiatric services at 132 medical centers and outpatient mental-health services at 689 medical centers and community-based outpatient clinics. In addition, readjustment counseling services are available for veterans and their families at 209 vet centers across the nation. To find out about benefits, go to www.va.gov/health or contact the VA healthcare benefits office by phone toll-free at 877-222-8387.
The VA also maintains a staffed hot line with suicide prevention and mental-health professionals. If a veteran is in crisis, he can call the suicide hot line at 800-273-8255.
Entitlement programs
Because of the high cost of care and difficulties keeping a steady job with health benefits, most people with schizophrenia depend on benefits from Social Security, Medicaid, and Medicare. We cover all three in the following sections.
Social Security
Like people with physical disabilities, people with mental illnesses may also only be able to work intermittently, be unable to work for a lengthy period of time, or be unable to work at all. It’s estimated that about 1 out of 20 people receiving Social Security benefits are people with mental disabilities.
There are two types of benefits available through the Social Security Administration (SSA):
Supplemental Security Income (SSI) pays benefits to disabled adults and children based on financial need. People over the age of 65 who meet financial limits do not have to prove a disability.
Social Security Disability Income (SSDI) pays benefits to people who have previously worked and paid into the Social Security system. An adult may qualify for benefits based on her parents’ earnings if her disability started before age 22. Payments average about $900 per month.
Some people are entitled to both SSI and SSDI if their SSDI income is below a certain threshold.
Unfortunately, none of these benefits comes automatically (or easily), and there are criteria for determining disability based on four standards:
Earnings
Severity of illness Type of work
Meeting the criteria on an established checklist
In general, to obtain benefits, an individual has to have a disability that interferes with his ability to work (which is expected to last at least one year) or who has a very low income. The individual also cannot have assets that exceed the limits set by the federal government.
To find out more about Social Security benefits, contact the SSA at 800-7721213, go to the SSA Web site (www.ssa.gov), or visit your local SSA office.
SSA offers a Social Security Online Disability Planner at www.ssa.gov/ dibplan/index.htm, which explains the benefits available, how to qualify, and how to apply. The application process entails an in-depth interview, either in person or on the phone.
Some patients and families find it hard to admit that they need help. It’s a natural tendency to try to present yourself in a positive light, but when it comes to accessing benefits, you and your loved one need to present an honest — even if it’s negative — portrayal if you want to qualify. On the application, make sure you list every disability that applies to your loved one. Carefully read the requirements before applying and make sure your written application shows that your loved one meets them.
For example, many individuals with schizophrenia have a co-occurring substance-abuse problem. If substance abuse is determined to be your loved one’s primary problem, she’ll be turned down for SSI or SSDI because the laws were changed in the 1990s so that people cannot receive disability payments on the basis of addiction alone. On the other hand, if mental illness is considered the primary disorder, your loved one will be eligible for these benefits. By denying the primacy of their son or daughter’s mental disorder, parents may be inadvertently sabotaging that individual’s chance to receive benefits that could support treatment and recovery.
The application process for benefits can be complicated, especially if the person applying is unable to respond to questions appropriately or accurately because of the symptoms of her illness. If your loved one is in this situation, she may need someone to assist her — a friend, relative, or lawyer, for example.
Expect to be turned down on your first application; it happens frequently. The government apparently looks at the application process as a type of weeding-out process, where only the truly needy or deserving who persist long enough wind up getting benefits. Initially, two out of three applicants are turned down — but upon appeal to an administrative law judge, more than two-thirds of those denials are overturned. People are often discouraged because it can take many months to process an application for disability, but don’t let it dissuade you.
Local governments can provide temporary public assistance (called Temporary Assistance for Needy Families) during this waiting period in the form of healthcare, food stamps, transportation, and rental assistance. If at first you don’t succeed, appeal! You may need to find a legal advocate or attorney to help you.
If you need assistance filing your claim or making an appeal, there are two national groups who maintain lists of people who can assist you:
The National Association of Disability Representatives (NADR):
800-747-6131 or www.nadr.org
The National Organization of Social Security Claimants’ Representatives (NOSSCR): 800-431-2804 or www.nosscr.org
Applying for public benefits can be a tedious and cumbersome process. Whenever possible, ask for help from a case manager or social worker. Make friends in every office you set foot in; fair or unfair, people will go out of their way for people they like. Also, many benefit forms require similar information — keep copies of every form you file in one place so you can easily retrieve the information the next time you need it.
After your loved one qualifies for SSI, it paves the way for his eligibility for other benefits such as Medicaid and food stamps.
Work incentives
People with schizophrenia want more than a paycheck; they look toward employment as a path to self-sufficiency. Many people fear, however, that if they work, they’ll lose the very benefits that provide a safety net for them if they become too sick to work again. Under certain conditions, it’s possible for people with mental illnesses to work and still receive monthly payments (either SSI or SSDI) as well as Medicaid or Medicare. This is called the work incentive program. Further information about work incentives can be found at www.ssa.gov/disabilityresearch/wi/generalinfo.htm. You can also order publications by calling 800-772-1213.
Another resource on the Web: The Ticket to Work Program (www.your tickettowork.com) is intended to provide people with disabilities with the services they need to land competitive jobs.
Medicaid
Medicaid is a form of health insurance for individuals and families with low incomes who are considered “medically needy” and meet other eligibility requirements. Although the program is governed by the federal government and has some uniform requirements, Medicaid is administered by states so the eligibility requirements, services covered, and rates of payment differ from one state to the next.
Help your loved one get on Medicaid as soon as humanly possible. Get over the stigma or shame you may feel about having to rely on public benefits; you’ll only be doing your loved one a disservice by procrastinating. Medicaid opens the door to an array of services that may not be available from any other payer, including private insurers. These include case management,
community treatment, and residential treatment services. And remember that Medicaid eligibility is based on your loved one’s income, not yours. The sooner he’s on Medicaid, the sooner he’ll be able to take advantage of these resources.
Unlike SSI or SSDI, which are paid to individuals, Medicaid is paid to the practitioner or program providing the services; in some instances, a patient co-pay is required.
You can find information about Medicaid at www.cms.hhs.gov/home/ medicaid.asp. For contact information for state Medicaid offices, go to www.cms.hhs.gov/home/medicaid.asp. You can also obtain state-specific information in person by going to local welfare or medical assistance offices in your community.
The types of mental-health and rehabilitative services eligible for Medicaid reimbursement vary depending on the state Medicaid plan. To find out more about services funded by specific states, go to http://mentalhealth. samhsa.gov/publications/allpubs/sma07%2D43 01. The report includes a table of the specific services funded by each state.
Medicare
Medicare is the health-insurance portion of Social Security. To qualify for Medicare, your loved one must be over the age of 65, disabled, or blind. Medicare has hospital insurance (Part A), medical insurance (Part B), and prescription-drug coverage (Part D). Similar to SSDI, eligibility is based on your loved one’s history of paying Social Security taxes when he worked or those paid by her parents or spouse.
To find information about Medicare, go to www.medicare.gov. Also, the Center for Medicare Advocacy provides a detailed summary of Medicare coverage for mental health services at www.medicareadvocacy.org/ FAQ_MentalHealth.htm.
Some Medicare health plans (like HMOs and PPOs) cover prescription drugs as part of the plan. The Centers for Medicare & Medicaid Services (CMS) have made available a Prescription Drug Plan Finder (www.medicare.gov/ MPDPF/home.asp) to find and compare drug plans that meet your personal needs, but because Part D is extremely tough to figure out, you may want to ask a case manager or other mental-health advocate for advice and assistance.
One bit of good news: The newly enacted Medicare Improvements for Patients and Providers Act of 2008 lowers co-payments for people with mental illnesses. Until now, Medicare beneficiaries had been paying a 50 percent co-pay for mental-health treatment, including therapy. Over the next several years, the co-pay will gradually be lowered to 20 percent, the same as beneficiaries pay for primary-care doctor visits.
The Bazelon Center for Mental Health Care has created a worksheet to help consumers select the right Medicare drug plan for them. You can find it at
www.bazelon.org/issues/drugs/drugplandirections.htm.
Coverage under Medicare and Medicaid is very complex. Don’t hesitate to contact your local Social Security office to ask for help.
The Medicare Rights Center (www.medicarerights.org) can be an invaluable resource. The Center provides free counseling services for people with Medicare problems and maintains a consumer hot line at 800-333-4114 to answer questions about choices, the appeals process, or complaints about care or treatment.
You can find some additional information on Medicare in Eldercare by Rachelle Zukerman, PhD.
College mental healthcare
If your loved one has a first break while at college, find out whether a student health service fee has been included as part of her tuition. Many colleges encourage students to pay for health insurance, and some insist on it, offering a time-limited health insurance policy, at the time of enrollment and each subsequent year, that often includes mental healthcare for uninsured students.
Many colleges offer counseling that may not be especially helpful at the time of a serious break, but that may be very helpful for a student returning to school after treatment who’s stabilized and doing well on medication.
Clinical studies and trials
Clinical studies and trials (see Chapter 10) are another option for obtaining high-quality care. In many areas (especially places that have academic medical institutions), your loved one may be able to participate in a clinical study designed to assess treatments for schizophrenia. Very often, during the course of a study, the costs of clinical assessment and tests are free, and there is reimbursement for associated travel expenses. In some cases, there’s also a small stipend for time spent for longer or more-frequent-than-usual evaluations.
The quality of care received during the research is usually quite good. In any study, a participant is allowed to withdraw from participation at any time, and withdrawal from the study cannot adversely affect their treatment afterwards.
To find out if there are any studies going on where you live, go to www. clinicaltrials.gov and search by the diagnosis schizophrenia.
You and your loved one need to be fully informed about the study and possible risks and benefits.
If your loved one is considering enrolling in a clinical trial, discuss the pros and cons with the clinician currently responsible for your loved one’s psychiatric care or even with your family doctor.
Working with Schizophrenia: Your Legal Rights on the Job
When your loved one is diagnosed with a serious and stigmatizing illness, like schizophrenia, she may be reluctant to tell her employer or colleagues. In the meantime, she may endure various challenges connected with the disease and its treatment. Medications may make her drowsy or impair her ability to concentrate. She may have self-doubts about her own ability to perform and may worry what her supervisor and colleagues will think of her or say. Should she tell them about her diagnosis, or should she keep it a secret?
If she missed time at work and was on sick leave, she doesn’t necessarily have to tell anyone in her workplace what happened. The decision is hers to make. If she has no problem performing her job, she’ll probably be more reluctant to reveal the diagnosis. But if she’s having problems returning to work, she’s less likely to find support in the workplace and she may find it uncomfortable if she provides no explanation for what others may see as laziness or inefficiency. Depending on her limitations, she may even risk her job by not saying anything.
Your loved one needs to find out about her rights under the American with Disabilities Act (ADA) and the Family Medical Leave Act (FMLA). Depending on the type of place where she works, she may or may not be covered by these pieces of federal legislation. Interpreting these laws is complicated. You or your loved one may need to talk to an attorney.
The Americans with Disabilities Act
The ADA, enacted in 1990, makes it unlawful for private employers with 15 or more employers, state and local governments, employment agencies, labor organizations, and management committees to discriminate in employment against a qualified individual with a disability that substantially limits one or more life activities.
Disability is broadly defined to include neurological symptoms, mental disorders, or psychological disorders.
The ADA does not apply to discrimination in federal employment, which is prohibited under Title V of the Rehabilitation Act of 1973.
Under the ADA, an employer cannot discriminate in hiring individuals with disabilities who are capable of performing a job. If your loved one is applying for a new job, an employer cannot ask him about a disability, nor can he be required to take a medical exam before a job offer.
After your loved one has been hired, his employer can’t ask him questions about his disability unless they pertain to the functions of the job. And if your loved one has a mental disability that substantially limits a major life activity, his employer may have responsibilities under the ADA to provide reasonable accommodations so he can perform his job. Reasonable accommodations may include flex time, leave for outpatient appointments or hospitalization, assignment of a supportive supervisor, and more feedback about job performance.
Of course, if your loved one doesn’t disclose his disability, it may be more difficult for his employer to understand what’s going on and to come up with a reasonable accommodation — which may be an argument for your loved one telling his employer about his schizophrenia.
If your loved one does decide to disclose his schizophrenia to his employer, he has several options:
He can merely state that he has a medical condition.
He can say he has a brain or emotional disorder, or a chemical imbalance.
He can tell his employer his specific diagnosis.
For more information about your loved one’s employment rights as an individual with a disability, go to www.eeoc.gov/facts/ada18.html. To find information on how to file a complaint with the U.S. Department of Justice, call 800-541-0301.
The Family and Medical Leave Act
Under The Family and Medical Leave Act (FMLA), an employee covered by the act is entitled to 12 weeks of unpaid leave during a 12-month period for certain family and medical reasons. Plus, it’s against the law for an employer to use a person’s decision to take leave as a factor in firing her or denying promotions. To find more information about FMLA, go to www.dol.gov/ esa/whd/fmla.
Your loved one’s psychiatrist, case manager, or job counselor may be able to offer guidance on making some tricky decisions. They can help your loved one assess her illness and its possible impact on her work. Another key advisor may be the human resources department; they can help advise your loved one about the employer’s sick leave policies and whether she has options such as part-time or flex-time employment.
In a supportive work setting, disclosing as much as your loved one feels comfortable disclosing to her supervisor and colleagues can help her better meet the demands of her job. Also, if an emergency occurs, the employer will be in a position to respond appropriately. But it’s always prudent to be selective in whom you tell, what you say, and when you say it. Your loved one will have to trust her instincts, and the advice of others when it comes to deciding whether or not to disclose schizophrenia to an employer.
If your loved one tells her employer, she should remind them that any health information she provides is confidential.
Planning for Your Loved One’s Care after You’re Gone
If you’re caring for someone with schizophrenia, you may worry about what will happen to her if you die or can no longer take care of him. Planning for the future is fraught with emotional and logistical complexities.
The goal of future-care planning is to minimize current stress, concern, and worry for caregivers and to minimize disruption and problems for their loved ones in the future. Families generally want to provide their loved one with as much independence as possible and with sufficient resources, within realistic limits.
Some of the issues that you may need to plan for include the following:
Where will your loved one live?
Who will bear financial responsibility for his care?
What types of insurance will be in place?
Who will make treatment decisions if your loved one is unable to make them on his own?
How will healthcare emergencies be handled and by whom?
Who will oversee or help manage your loved one’s financial and legal affairs? Will she need someone to handle her entitlements (known as a representative payee)?
Everyone involved needs to be in on the planning and decisions necessary to identify and resolve all the issues related to future care:
Your loved one should have a large say in his own future.
Caregivers and providers will need to weigh in and help identify whether those preferences are realistic and appropriate, and how they can best be achieved.
Families often find that they also need to involve lawyers or other professionals because planning for the future often involves wills, inheritances, and property issues. Consult with an attorney who specializes in estate planning for families with a person with a disability.
For example, under ordinary circumstances a disabled adult cannot have assets that exceed $2,000, excluding his home or car. However, families can get around this rule if they set up a special needs trust (also called a supplemental needs trust). Instead of leaving an inheritance directly to a loved one with schizophrenia (or any other disability) and potentially jeopardizing her continued eligibility for SSI and Medicaid benefits, the law enables you to establish a trust. A trustee named by the family is able to hold and manage the inheritance for the person with schizophrenia while the person continues to receive SSI and Medicaid.
To simplify some of these challenges, NAMI has helped establish a national, nonprofit Planned Lifetime Assistance Network comprised of more than 23 programs in 18 states across the country to serve as a safety net for the future and also to help parents who can’t handle the current burden of care on their own. At a minimum, each program tries to resolve three key service issues for families and their relatives:
The development of a care plan
Identification of resources to support the care plan
