Fact sheet number wheel: 1
icon: head with visible brain

01: About Mental Health Caregiving

Introduction

As many as 8.4 million Americans act as caregivers to adults with emotional or mental health conditions.1 Studies have shown that mental health caregivers often have a heavier burden of care and higher stress levels than the typical family caregiver.2

To investigate the experiences and hurdles encountered by these “mental health” caregivers, the National Alliance for Caregiving (NAC) partnered with Mental Health America (MHA) and the National Alliance on Mental Illness (NAMI) to survey caregivers of adults with mental health conditions. The purpose of this national study was to understand experiences, and identify challenges, that occur to this specific group of caregivers. In September 2015, the study collected data from 1,601 adult caregivers who provide care to a friend or family member with a mental health condition such as depression, bipolar disorder, schizophrenia, or other conditions. The resulting report, On Pins & Needles: Caregivers of Adults with Mental Illness, was published in 2016.

Findings

According to the study, the average mental health caregiver is roughly 54 years old, falling in the majority category of caregivers who are aged 45 to 64 years old.3 The most common type of mental health care is the one provided to a family member (88%) or, more specifically, to an adult son or daughter (45%). The average mental health care recipient was around 46 years old, despite the fact that most care recipients fell in the 18 to 39 age category (58%). The typical mental health caregiver provided an average of 32 hours of care per week, over a 9-year caregiving journey.4 These results indicate that mental health caregivers address their care recipient's needs for more hours a week and more years on average than the typical family caregiver.

Approximately 45% of mental health caregivers live with the care recipient, and nearly half of them report that the recipient is financially dependent upon them. Parent caregivers of adult children with mental health conditions report higher levels of stress and burden compared to other family caregivers. These caregivers also report that caregiving-related tasks have made their own health worse (62%). This can also be attributed to the fact that a majority of these caregivers have no plans in place for someone else to care for their adult child in the event that they can no longer do so (68%).5 In addition, 65% reported that there is no other family member or friend for their adult child to rely on for assistance. The above statistics are also higher compared to numbers reported by family caregivers of adults with other medical conditions. These troubling statistics further increase the need for additional services or supports necessary to assist mental health caregivers and to provide options for care recipients in the event that their main, or sole, caregiver is unable to care for them.

More than eight in ten caregivers (82%) indicated that the person they care for manages his/her mental health condition with medications. Many reported difficulties in getting the care recipient to take medications. Likewise, about four in ten caregivers (40%) did not think, or were not sure, that the care recipient's mental health symptoms were diagnosed accurately. The caregivers who believed the care recipient had an accurate diagnosis (62%) indicated that it took an average of 11.8 years for the diagnosis.

Roughly half of all mental health caregivers found it difficult to converse with others regarding the care recipient's mental health condition. In addition, half of these caregivers reported feelings of loneliness and helplessness: 63% said that because of caregiving, they felt there was not enough time to tend to themselves.6 As stated above, mental health caregivers reported higher levels of stress and burden. Feelings of despair and isolation were a factor in higher stress levels and could lead to negative health outcomes. Forty percent (40%) of mental health caregivers reported finding it difficult to take care of their own health, and more than half reported that caregiving made their health worse.7 These results highlight the need for additional services and support for mental health caregivers. Addressing the health and overall well-being of caregivers is not only important to the caregivers but to the person(s) they care for.

Twenty-five percent (25%) of mental health caregivers also indicated they had trouble finding the needed services for their family member's care. Because services were not always available in the care recipient's local community, most caregivers reported experiencing difficulties in finding day treatment (64%) or peer support (58%) for the care recipient.8 Furthermore, mental health caregivers reported difficulty in navigating the care system and interacting with providers. Roughly half of caregivers reported being told that the health care provider or professional was unable to speak to them about their care recipient's condition (54%).9 Existing organizations in the mental health space are providing training and information to their members. Few of the mental health caregivers not affiliated with one of these organizations, however, had any sort of mental health caregiving training or education (39%). These unaffiliated caregivers often relied on doctors or health care professionals (74%), or general internet searches (38%) for information. Given their own perceived lack of inclusion in care conversations, such strong reliance on health care professionals may have limited the caregivers' own ability to learn about their care recipient's condition. Given the service system challenges that caregivers faced, perhaps it comes as no surprise that one of the areas that caregivers wanted addressed was policy support to facilitate care access and navigation — both mental health coverage parity (31%) and care navigator services (30%).

Policy Recommendations

Acknowledging the unique challenges facing mental health caregivers, the report recommends the following:

Fact sheet number wheel: 2
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02: Economic Impact of Mental Health Caregiving

Introduction

Approximately half of family caregivers in a national study of mental health caregivers10 reported that their care recipient relied on family and friends for financial support. Intricately linked to financial support were plans for the future. According to caregivers in the study, 64% reported that their adult child was financially dependent on friends and family. When it came to future plans, only 32% had financial arrangements for future care of their child.11

The economic impact of caring for a care recipient with mental illness can be devastating: the time invested in helping someone attend doctors' appointments, helping with medications, and missing work. All of these issues require financial investment. Figure 25 (see below) from the report On Pins and Needles provides an interesting backdrop to this discussion.

Background: The Economic Impact of Mental Illness on Caregivers

According to the World Health Organization (WHO), mental illnesses are the leading causes of disability worldwide, accounting for 37% of healthy years lost from non-communicable diseases. The new report estimates the global cost of mental illness at nearly $2.5 trillion (T) (two-thirds in indirect costs) in 2010, with a projected increase to over $6T by 2030. What does $2.5T or $6T mean? The entire global health spending in 2009 was $5.1T. The annual GDP for low-income countries is less than $1T. The entire overseas development aid during the past 20 years is less than $2T.

Chart showing care recipient's financial dependence
Figure 25: Care Recipient's Financial Dependence Q43: How financially dependent is/was your [relation] on his/her family or friends?

Finding Needed Services

As a caregiver looking for services, there are mental health advocacy organizations such as the National Alliance on Mental Illness (NAMI) and Mental Health America (MHA) that can help the caregiver with the first steps. The stigma that mental illness carries crosses many boundaries including socio-economic status, racial and ethnic lines, and gender. Access to services can make the difference between a trajectory that is less challenging and one that is not. Caregivers report that they rely on healthcare providers and/or Internet searches to find services and programs. When it comes to the economic impacts of caregiving, the barriers can be challenging: addressing these barriers requires specific knowledge. Not understanding these economic impacts can be a roadblock to services and guidance.

There are various tools online to access services through national organizations.

In addition, programs in the public sector can also serve as access points to support mental illness care. Explore these available information and referral systems that can provide phone numbers and other information on the services available. The following include examples of services and assistance that may be of interest:

Helpful Websites

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03: Finding the Right Provider

Introduction

Finding mental health service providers can be daunting, especially if the person you care for lives in a rural area, comes from a diverse culture, or has specialized needs. Yet, despite challenges, it is worth the effort because appropriate mental health care can save lives and restore hope.

As a caregiver, you can help your care recipient get high quality care by becoming informed about effective mental health care and the range of service providers who can play a role. This fact sheet describes the types of mental health providers qualified to deliver various services, what to ask when searching for a provider, and what you can do to help a care recipient gain the best value from care.

Background

If you are having trouble finding qualified mental health service providers, you are not alone. The mental health workforce shortage in the U.S. has reached a critical point. More than half of all counties across the U.S. have no mental health providers, and 75% are designated as critical shortage areas.12 A national study13 found that almost seven in ten caregivers felt the care recipient needed a mental health professional (69%), but one in four (28%) had difficulty finding a provider within a reasonable distance from the care recipient's home. Six in ten felt the care recipient would benefit from a medical professional who understood mental health conditions, yet more than a third (37%) had trouble finding such a clinician. Four in ten (40%) were not satisfied with the number (51%) or quality (46%) of mental health service providers in their community.

Service Needs and Availability

There is hope. Policymakers and insurers are working to expand and improve the mental health workforce and increase the capacity of existing providers through:

If you or the person you care for cannot find a mental health specialist, ask your family doctor or local health clinic for help.14 Primary care providers can effectively treat mild to moderate mental health conditions.15 Even for more severe symptoms, your primary care provider may be able to link your care recipient with a mental health specialist for the first phase of treatment. When the person you care for is stabilized and a treatment regimen established, the primary care clinician can continue to provide care with guidance, as needed, from a specialist.16

Graph of service needs and availability

Mental Health Care Providers

Mental health treatment involves a range of services including assessment, diagnosis, counseling, medication, support services, crisis response, and inpatient care. The following are common types of mental health providers qualified to deliver components of mental health care:
Psychiatrist (MD)
A licensed physician with specialized training in diagnosis, treatment with psychiatric medications, and psychotherapy. Specialists may have additional training in children and youth, addiction, or geriatric care.
Advanced Practice Psychiatric Nurse Practitioner (APRN)
A licensed master's or doctoral level clinician qualified to assess, diagnose, plan care, prescribe and manage medications, and provide psychotherapy. APRNs may practice independently or under the supervision of a psychiatrist.
Psychiatric registered nurse (RN, BSN, or MSN)
A bachelor's or master's level professional with specialized mental health training, qualified to assess mental health needs, plan care, administer medication, and provide routine primary medical treatment. Nurses generally focus on wellness and healthy lifestyle choices.
Clinical psychologist (PhD or PsyD)
A licensed doctoral level professional trained to evaluate mental health status using clinical interviews, psychological evaluation, and testing. Psychologists are qualified to diagnose mental health conditions and provide psychotherapy.
Licensed clinical social worker (LCSW)
A licensed master's level clinician trained to evaluate mental health status, provide psychotherapy, case management, and advocacy. Social workers focus on the person within their social environment, including among family, peers, and community.
Licensed professional counselor (LPC)
A licensed master's level clinician trained to diagnose, counsel, and facilitate prevention training. LPCs often work with individuals, families, and groups in community mental health centers and addiction treatment agencies.
Marriage and Family Therapist (MFT)
A master's or doctoral level counselor licensed to diagnose and provide psychotherapy for mental health and substance use conditions. MFTs treat individuals, couples, and families and focus on managing symptoms within interactions and relationships.

Mental Health Providers: Who Does What?

Case manager or care coordinator
A provider trained in person-centered assessment and planning, service brokering, and obtaining benefits such as income support or health coverage.
  • Case managers help your relative make the best use of mental health services, ensure that services respond quickly and efficiently, and obtain needed benefits and entitlements.
  • Care coordinators coordinate mental health, substance use, and primary care.
Peer support specialist
A trained, certified, provider with personal experience in recovery who serves as a mentor to demonstrate recovery, help the person make sense of their experience, identify goals, create a recovery plan, obtain needed services, and connect with peers.
Occupational therapist (OT)
A bachelor's or master's level specialist who helps the person live as independently as possible while engaging in meaningful life roles. The OT teaches living skills and provides advice on adapting environments such as home, work, and school to promote optimal functioning.
Employment specialist
A bachelor's or master's level provider who helps the person choose, obtain, and succeed at work that is aligned with their interests. Supported employment includes vocational assessment, job search and placement assistance, and workplace support.
Housing specialist
A bachelor or master's level provider who helps the person obtain decent, affordable housing. The housing specialist: assesses needs, goals, and eligibility; helps secure chosen housing, obtains housing subsidies, teaches budgeting and living skills, and mediates with landlords as needed.

Mental health providers may serve in private practice, community mental health agencies, psychosocial rehabilitation programs, crisis response services, hospitals or residential facilities. Services may be covered by private health insurance or public programs such as Medicare, Medicaid, state or local government or the Veterans Administration. Some psychiatrists or therapists only accept private payment.

PROVIDER TYPE

TREATMENT ELEMENT

Psychiatrist

Nurse practitioner

Psychiatric nurse

Clinical psychologist

Clinical social worker

Professional counselor

Marriage & Family

Case care manager

Peer support specialist

Occupational therapist

Employment specialist

Housing specialist

Assessment, care planning

X

X

X

X

X

X

X

Diagnosis

X

X

X

X

X

Psychotherapy, counseling

X

X

X

X

X

X

Medication, neurological treatment

X

X

Service brokering, navigation

X

X

X

Emotional support

X

X

X

X

X

X

X

X

X

X

X

X

Life skills, socialization

X

X

X

Housing support

X

X

X

Supported employment

X

X

X

Crisis intervention

X

X

X

X

X

X

Hospital, residential treatment

X

X

X

X

X

X

X

X

Mental Health Care: Questions to Ask

Empathy and responsiveness are as important to good mental health care as professional expertise. Your relative will gain the best value from providers who listen, carefully explain the treatment, and respond to concerns.

Consider the following questions when searching for a mental health professional:

Your Part in Promoting High Quality Mental Health Care

The best mental health care comes from a partnership between the provider, the person in care, and close supporters. As a caregiver, your informed, caring, support can make all the difference.

Helpful Websites

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04: Communicating with Health Professionals

Introduction

As with any medical care, mental health treatment works best when the care recipient follows the treatment plan. Family caregivers can play a crucial role in treatment engagement and often have information that would enable the treatment team to refine the care plan. At the same time, you may need information from the team to understand the mental health condition, promote treatment, and provide follow through and practical support.

Background

Communication with mental health providers can be challenging because patient confidentiality is protected by health privacy laws. For example, a national study of mental health caregivers found that most caregivers (71%) turned to a health care professional for help or information about care, yet more than half (54%) had been told that a mental health provider could not speak with them. More than half said they were included in care discussion less often than they felt they should have been (55%).17

The person you care for can sign an information release designating you as a contact to be informed of, and support, the treatment process. Despite what you may hear, neither laws nor ethics prevent the person receiving care from naming caregivers to support the treatment plan. In fact, a growing number of states have enacted laws requiring hospitals to ask patients to name a designated caregiver.18

Clear communication guidelines will also improve your ability to help the care recipient benefit from treatment. To the extent possible, the best strategy is to work with the care recipient and the mental health team to identify what information should be shared, by whom, and under what circumstances. Planning ahead helps you arrange practical steps to meet the care recipient's needs while conforming to professional ethics and legal standards.

How Confidentiality Law Protects and Permits Communication

Federal health privacy law19 protects client confidentiality, including defining who can have access to protected health information and under what circumstances. Although the Health Insurance Portability and Accountability Act (HIPAA) limits sharing information when the person does not want others involved, the law allows broader communication than most people realize. One exception is for substance use treatment where confidentiality standards are more restrictive than for health or mental health care.20 To learn more, see the fact sheet on Confidentiality and Family Involvement (pg. 45).

Federal health privacy law allows providers to share on a ‘need to know’ basis if the client:

A written release is always best but as an alternative, the provider can:

Examples of information that may be shared include hospital discharge dates, appointment times, medication instructions, or crisis plans. The person's direct permission is required to share the content of therapy sessions, except in cases of abuse, or threats, to another person.

No permission is required for you or other supporters to give information to the care recipient's mental health care professionals, although, because they are busy, it is wise not to contact them more than necessary. Due to confidentiality procedures, the provider may or may not acknowledge the information you share, but your message will still be considered.

Communication Plan

For communication to flow smoothly, it is wise to work out an agreement with the care recipient and the treatment team. Identify the purpose of communication — for instance, to preserve stability and support recovery — and then specify what should be communicated, by whom, and under what circumstances. Even if you have health care power of attorney, legal guardianship, or conservatorship, it is best to respect the care recipient's preferences to the greatest extent possible.

Step 1: Talk with the person you care for about the value of caregiver support in the treatment process and the need to communicate with providers. Make it clear that you only need practical information to help them follow through on treatment such as managing appointments, addressing transportation needs, helping file insurance claims, paying bills, or gathering information on the prescription regimen. Keep notes of the conversation on paper, or in a computer file.

Timing is everything. Talk when things are going well or after a crisis has been resolved and the desire for a better outcome is still fresh in mind. If the person is nervous, emphasize that the plan can be changed as needed.

Stay positive. Express how much you care. Explore how you can support treatment and preserve the care recipient's dignity. Ask what you already do that is helpful, what else your relative would like, and what should be avoided. Discuss what to do if safety is at risk. Describe your own hopes, concerns, and needs as a caregiver.

Keep it simple. Set one or two goals with the person you care for and talk through how the goals will work. If there are several goals, have more than one conversation. If you have requests, make them one at a time and give plenty of opportunity to clarify and discuss.

Listen with an open mind. Summarize the essence of what the person says without adding judgment or advice. By listening more than you talk, the person you care for will feel respected and will be more likely to openly express thoughts, feelings, and wishes.

Own your feelings: Use ‘I-statements’ to express your feelings: “I feel [emotion] when you [behavior].” You may continue, “How can we resolve the problem in a way that is okay for both of us?” This method reduces blame and conflict.

Invite a neutral listener: If tensions are running high, invite another trusted person to help the care recipient feel more secure.

Step 2: Complete an information release form. Help your relative get the specific form used by the provider. Help them complete the form, if needed. It may be useful to meet with your relative and the provider together to address questions and work out details.

Talk with your relative and the provider about what information may be shared. The provider's disclosures will be limited to practical information directly relevant to your involvement in, or payment for, your relative's care. Your communication to the provider will be limited to practical details, observations, and concerns about safety.

Agree on modes of communication. Find out whether the provider would like to receive messages by telephone, email, or another format. Some providers have an electronic patient portal with appointments, prescriptions, test results, and the ability to send a secure email.

Attend a team meeting. Find out whether it would be helpful for you or another caregiver to attend a meeting with the care recipient and the provider to discuss your caregiver role. Plan when and where.

Be open with your relative. If you plan to communicate with a provider, explain what you intend to share, and why, in a gentle, but straightforward, way. Honesty builds trust.

Step 3: Review the plan regularly. When the initial release form and communication plan are completed, set a follow up appointment with your relative and the provider to assess how well things are going and what may need to be changed or added. It is important for your relative to know in advance that the plan can be adjusted.

Record Keeping

As a caregiver, you may have valuable information that could affect care such as how the person you care for responds to therapy or medication, life changes, stresses, or successes. By keeping written records, you create a resource to help the care recipient get the best possible results.

Keep health information in one place using a format that fits into your daily life such as a three-ring binder, file folders, computer files, or an electronic personal health record. Records may include:

Good records give you the ability to provide accurate information and promote continuity of care. It is best to work with the person you care for, the goal being to help them lead a satisfying life as they define it. An open partnership builds a trusting relationship that will help the care recipient gain the most value from treatment.

Helpful Websites

Fact sheet number wheel: 5
icon: person in hospital bed

05: Getting an Accurate Diagnosis

Introduction

An accurate diagnosis is the first step to effective mental health care. Mental health professionals use the diagnostic process to develop a treatment plan that is most likely to help the care recipient. A diagnosis is often comforting because at least it provides a name for the difficulties the care recipient is experiencing — and a path toward relief.

Diagnosis serves other purposes as well. A diagnosis is necessary before insurance will cover mental health care. It is also required to qualify for disability support through Social Security or for job protection under the Americans with Disabilities Act. Finally, you, and the person you care for, can use the diagnosis to learn more about the mental health condition and take steps to pave the way for recovery.

Who Can Diagnose?

Several types of professionals are qualified to diagnose mental health conditions. It is best to start with the care recipient's primary care physician. If the care recipient doesn't have a physician, connect with your local community health center. The primary care physician may conduct an initial assessment and administer treatment if the care recipient's symptoms are mild to moderate or if there are no mental health specialists in your community.

Two groups of specialists are qualified to diagnose mental health conditions:

  1. Prescribers who mostly focus on medication, and,
  2. Therapists or counselors who conduct psychotherapy or “talk therapy.”

Mental Health Prescribers

Psychiatrist
A medical doctor with a degree from an accredited medical school who specializes in the diagnosis and treatment of mental health conditions. A psychiatrist will conduct the diagnostic interview, prescribe medication (if needed), and order lab work to make sure the medication is balanced. Psychiatrists don't often conduct psychotherapy, but they may coordinate a treatment team of therapists and other service providers.
Psychiatric Nurse Practitioner
A registered nurse with a graduate degree from an accredited program and specialized training in the diagnosis and treatment of mental health conditions. The nurse practitioner provides many of the same services as a psychiatrist. A nurse practitioner may refer to a psychiatrist when the patient also has other medical conditions, or when controlled medications (such as narcotics) are part of the treatment regimen.

Mental Health Counselors

Psychologist
A licensed mental health professional with a Ph.D. in clinical, counseling, school, or other specialty areas in psychology from an accredited graduate program. Psychologists conduct psychological evaluations, diagnose mental health conditions, and provide individual and group therapy.
Clinical Social Worker
A clinician with a master's degree in clinical social work from an accredited graduate program. Clinical social workers conduct assessments, diagnose mental health conditions, provide individual and group counseling, case management, and client advocacy.
Licensed Professional Counselor (LPC)
A counselor with a master's degree in psychology, counseling, or a related field. Licensed Professional Counselors are trained to diagnose and provide individual and group counseling.

What Does the Diagnostic Process Involve?

A thorough evaluation should begin with a primary care physician who will conduct a physical exam and administer lab tests to rule out other medical conditions with symptoms that can look like mental illness. If the physical examination fails to explain the symptoms, the doctor may refer to a mental health specialist or seek advice from a mental health expert.

The next step is a psychological assessment (conducted by a licensed mental health counselor) or psychiatric evaluation (conducted by a psychiatrist). The diagnostic process includes:

The clinician typically refers to the Diagnostic and Statistical Manual of Mental Disorders (DSM) when making a diagnosis. The DSM is a catalogue of mental disorders published by the American Psychiatric Association. Providers may also refer to the International Classification of Diseases (ICD).

Your care recipient may receive more than one mental health diagnosis. This is because symptoms of mental health conditions overlap. It may not be clear whether one or more diagnoses explain the symptoms the care recipient experiences.

Be prepared for the process to take time. Because no lab tests are yet available to definitively diagnose mental health conditions, mental health professionals rely on training, psychological tests, and their clinical experience to determine how symptoms fit into possible diagnoses.

The diagnosis may change. As the clinician works with your care recipient over time, patterns of thought, feeling, or behavior may emerge that indicate a different diagnosis.

The Person I Care For Has a Diagnosis, but It Doesn't Seem Right

Recent research21 showed that four in ten caregivers of adults with mental health conditions felt the person they cared for may not have had the correct diagnosis. Among those who thought the diagnosis was correct, it took an average of eight years to get to that point. Fortunately, the science of early intervention in mental illness is advancing22 and the number of effective treatment options is growing.23

It is important that treatment begin right away. The service provider may start with an initial diagnosis and course of treatment to see how the care recipient responds. The treatment may include individual therapy, family therapy, support services, or medications. When the treatment plan is developed, ask the provider how long it should take to determine whether the plan is working. If the treatment does not seem to be helping within that period—or helping enough—tell the provider.

The person you care for has the right to a second opinion if the provider does not respond, or if you question the diagnosis and recommended treatment. Be sure to ask the health insurance company whether second opinions are a covered benefit for mental health conditions. You may have to pay out of pocket, but it may be worth the expense.

As a Caregiver, How Can I Help?

If the care recipient agrees, it is helpful for them to complete an ‘information release’ or ‘consent to release information’. This legal document allows you to communicate with the treatment team. The care recipient has the right to decide who should be involved, for how long, and what types of information can be shared. Because clinics or private providers often have their own information release form, the person you care for may have to complete more than one if treatment is provided through multiple agencies or private practitioners. If a consent has been signed, you may be asked to fill out a questionnaire to help identify the diagnosis.

Regardless, you can help by gathering information. If possible, do this in partnership with the person you care for to build trust, reduce confusion, and help him/her advocate for the most effective care.

The following information can be helpful:

Finally, learn about mental health conditions, effective treatment, communication skills, and how to care for yourself. Family education (such as the NAMI Family to Family course) will help you understand what symptoms to look for, how an illness might develop, and what can be done to help. The time you take to educate yourself will be rewarded in greater understanding, better communication, and increased trust with your care recipient and others in the family. This will relieve some of your caregiving burden and increase the likelihood that your care recipient will recover the ability to lead a full and satisfying life.

Helpful Websites

Fact sheet number wheel: 6
icon: female nurse sitting behind desk

06: Discharge Planning

Introduction

When a mental health crisis occurs, time seems to stand still and yet everything happens in the blink of an eye. The moments from the beginning of a mental health crisis that results in treatment in a health care facility to the discharge can be an extremely isolating time for mental health caregivers. This is true whether the treatment was in an emergency department or involved a stay in a facility.

When it seems as if the person you care for has been sent home too early, it can be even more frustrating. In a recent study, when caregivers were asked about discharge situations, 70% report that when the care recipient went to a facility in crisis they were sent home too early or quickly.24

The time following a crisis is one of the most critical times for both the caregiver and their care recipient. How this is handled can make all the difference in the transition from hospital to home. Being fully aware of your choices as well as the challenges, opportunities, and resources is critical and can help to mediate the challenges you may face in your role as caregiver in this situation.

Background: Mental Health Caregivers and Discharge Planning

Knowing what is necessary to support the person you care for needs as they transition from a health care facility to home is the key to success. But, how do you know what support is needed? More importantly, how do you know what programs and services are available in your community? Unfortunately, many mental health caregivers report that services are either not available or hard to locate.25 Discussions with health care professionals should start early: we suggest starting the discussion about plans for discharge at the time of admission. There are many terms related to what is known as ‘discharge planning’ and educating yourself is key to advocating for a successful transition for your care recipient. When a care recipient is admitted to the hospital, or spends time in the emergency department, some medical professionals may use terms such as continuity of care or care transitions. Both terms refer to the time and the process between preparing to leave a hospital setting and going home. This process should be person-centered and driven by outcomes related to a successful transition for the person with the mental health condition and for you as the caregiver. Armed with information and awareness, you can be sure to make this process a smoother transition.

Your Role in Planning for Discharge & Ensuring a Successful Transition

Many individuals experience challenges after being discharged from the hospital. Research suggests that these situations can be avoided or minimized through proper planning.26 The discharge process requires open communication, knowledge of the health care system, and information related to local services and supports. Most importantly, caregivers should be advocates for themselves and the care recipient.

The Centers for Medicare & Medicaid Services (CMS) suggests considering the following when preparing to leave the hospital:

The Agency for Healthcare Research and Quality (AHRQ) developed a discharge planning overview that provides a roadmap for successful transitions and continuity of care. The elements of a successful discharge planning process are outlined below. It is critical that you are:

  1. involved;
  2. included in the discussions; and,
  3. educated.

As the caregiver, you should expect and insist that the following occurs between you, the person you care for, and the discharge planning team:

Helpful Websites

Fact sheet number wheel: 7
icon: hand pointing to a tablet with medical cross

07: Health Insurance

Introduction

Mental health is essential to overall health and well-being, yet mental health insurance benefits often do not measure up to coverage for other types of medical care. In a recent study of caregivers of adults with mental health conditions, one third of the caregivers (31%) stated a need for health insurance to cover mental illness on par with medical care.27

Background

Three federal laws protect people from discrimination in mental health and addiction coverage: The Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA), The Patient Protection and Affordable Care Act of 2010 (ACA) and the 21st Century Cures Act of 2016. These laws require most health plans to cover mental health and addiction treatment at the same level as other types of medical care. The number of covered visits cannot be lower, and out-of-pocket costs cannot be higher. The selection of prescription drugs must be comparable between mental health and medical or surgical care. Standards used to approve or deny care cannot be stricter for mental health.

Parity applies whether the provider or health facility is in or outside the health plan network. And, if no in-network provider is available close to home, insurers are required to cover out-of-network care at no additional out of pocket cost.

Health coverage for most Americans is subject to federal parity law. That includes large employer health plans, self-insured employer-based plans, and Medicaid managed care plans. Most health insurance purchased by individuals or small employers (2-50 workers) must comply with parity law, whether sold through a health insurance exchange or not. A few individual plans are exempt, but only if they were purchased before 2010 and have not changed since. Medicare has a lifetime limit of 190 days for in-patient psychiatric care: although outpatient services are covered at the same level. Parity is not required for Tricare, retiree-only plans, state and local government plans, or health plans for faith-based organizations.

Parity Warning Signs

Mental health parity may be an issue if the care recipient's health plan denies approval for care recommended by the provider, if out of pocket costs are higher, or if it is difficult to find a mental health or addiction treatment provider who takes the health plan. The most common parity issues include:

What to Do

You and the care recipient may take the following steps if the health plan will not pay for the mental health or addiction care prescribed by the provider:

  1. Talk with the provider. Ask why the recommended treatment is preferred over alternatives recommended by the health plan.
  2. Contact the health plan customer service line. Explain the situation and ask for a decision to cover the requested care.
  3. If not satisfied, file a written appeal. Formally asking the health plan for a different decision is worthwhile, because many appeals are overturned in favor of the consumer.

    At the same time, contact the state health insurance department or Medicaid consumer complaint service. Staff at these offices can help you understand whether parity applies and how to file a complaint. They can also connect you to the person or agency responsible for your care recipient's health plan.

Visit the U.S. Department of Health and Human Services parity complaint portal for more information and to connect to the correct government agency: http://www.hhs.gov/mental-health-and-addiction-insurance-help.

Helpful Websites & Contact Information

Fact sheet number wheel: 8
icon: map location pin with medical cross

08: Community Services

Introduction

As a caregiver, it is challenging to help the care recipient. The person you care for may need help finding mental health services in addition to practical help such as personal care, cooking, shopping, transportation, finances, and paperwork. It is often difficult to find the time and energy to make it all happen, and still attend to the other parts of your life. Learning how to access the available support in your community can relieve some of the pressure.

Background: Mental Health Caregivers and Community Services

In a recent study, mental health caregivers reported dissatisfaction with the number (51%) and quality (46%) of mental health community services in their care recipient's area. The problem was most acute in rural areas where services were sparse and remote. Studies of caregivers of adults with mental illness have found that:

Often it is the caregiver who becomes the advocate and has the most knowledge about the care recipient's situation, but this can come at the price of personal sacrifice and lack of work-life balance. One in three caregivers (34%) reported barriers to talking with providers about their own needs for self-care. More than a third wanted, but could not get, respite services (39%).28

Finding Needed Services

Services for the care recipient: If you are a caregiver looking for services, there are mental health advocacy organizations such as the National Alliance on Mental Illness (NAMI) and Mental Health America (MHA) that can help. Advocacy organizations often have staff and volunteers who also happen to be caregivers. They may know the local resources and be able to help you open doors. It can be comforting to have someone standing with you who understands the system and has provided care.

Many caregivers rely on their family doctor or other health care providers to find services and support. Health care providers, however, may not be versed in the range and quality of specific community mental health programs available in your community. They may not have any information about services that would support caregivers and families. Because of our fragmented health and social service system, care recipients and caregivers often fall through the cracks.

In a recent study, mental health caregivers indicated the need for policy support to help make services available and easy to navigate. Specifically, they asked for mental health coverage parity (31%) and care navigator services (30%).29

Mental Health Services and Supports

Mild to moderate symptoms of mental illness may be treated by one main provider, although more serious conditions often require a multidisciplinary approach. If your care recipient lives in an area short on mental health professionals, routine treatment can be delivered through a local health clinic, with additional expert care as needed through tele-health or psychiatric consultation. Mental health care may involve the following:

Helpful Resources

There are various online tools to access services through national organizations. One resource is your local municipality. Many people don't think of the public sector as being an access point for mental illness but in fact there are many programs that may assist you. Examine the information and referral systems that can provide you with phone numbers and other information on available services. The following includes examples of services and assistance that may be of interest:

Helpful Websites

Fact sheet number wheel: 9
icon: scales of justice

09: Dealing with the Criminal Justice System

Introduction

If the care recipient experiences a crisis, it may be necessary to call law enforcement for your safety or that of your family member. Depending on the circumstances, you may be relieved, thinking that incarceration would, at least, provide food, shelter, and access to mental health care.

The reality is quite different. Without specialized training, busy court staff may not know how to assist the care recipient. Jails are noisy, crowded, and dangerous: no place for someone who is easily traumatized. Probation or parole may set expectations that cannot be met. People with mental illness can easily get caught in a cycle of arrest, court, and incarceration/punishment rather than the treatment that could improve their lives.

The criminal justice system is not equipped to meet the needs of people with mental illness. Experts on this issue agree that the current approach fails to improve public safety, stresses already strained local resources, and harms people with mental health conditions and their caregivers. To address the problem, diversion models have been developed and are spreading across the country, however, progress is slow and uneven.

Background

Unfortunately, criminal justice intervention has become a primary strategy to patch our nation's fragmented mental health system. Many people with mental health conditions are arrested for minor crimes which are linked to their illness or addiction rather than any intent to harm. Two million Americans with mental health conditions are in jail and prison each year.35 Inmates with mental illness tend to serve longer sentences than others convicted of similar crimes.36 Once released, they are at higher risk of re-arrest and more time behind bars.37

In a national study of mental health caregivers, one third (32%) of the respondents reported that their care recipient had been arrested. Arrest rates were higher for males (45%), individuals with co-occurring addiction (59%), and those with schizophrenia or bipolar disorder (43%). Mental health caregivers whose care recipient had been arrested were more often concerned about victimization (70%) and self-harm (74%) than the overall sample.

The facts are grim, but you are not helpless. There are steps you, as a caregiver, can take to get your care recipient out of this environment and into care.

The Criminal Justice Process: Tips to Help Your Care Recipient

Although criminal justice systems vary by state, county, and municipality, there are similarities. At each point in the criminal justice process, you can take steps to improve your care recipient's situation. It is important to know that there are many steps after an initial encounter with law enforcement: at every stage, there may be opportunities to help improve your care recipient's situation or reduce their chances of long-term incarceration.

Crisis Plan: The best way to deal with the justice system is to avoid it altogether. Planning is key to prevention. A Psychiatric Advanced Directive (PAD), written crisis plan, or a Wellness Recovery Action Plan (WRAP) are good tools to help things go better during a mental health crisis. Developing a crisis plan will help you and your care recipient discuss what to do in a crisis and identify the best support to call on. With a plan, you may be able to get through a mental health crisis without calling the police. Having a crisis plan can also help you decide what to say if you do need to call the police. Learn more at www.nrc-pad.org and www.mentalhealthrecovery.com

Law Enforcement: When safety is at stake, law enforcement officers may be called. Although arrest is one possibility, officers may divert the person into mental health care rather than making an arrest.

Tip When you call law enforcement, mention that your care recipient has a mental illness and provide as much information as possible. Note whether they are, or have been, in treatment. Tell the dispatcher about a crisis plan if there is one. Share this information with the dispatcher, because the officer may not ave time for a detailed conversation. Learn more: www.nami.org/find-support/family-members-and-caregivers/calling-911-and-talking-with-police

Tip Ask for a Crisis Intervention Team (CIT) officer. Many communities have these specialized officers who are trained to handle mental health crises. Learn more at www.nami.org/cit

Booking and Pretrial Detention: If arrested, the person you care for could be taken into custody while decisions are made about criminal charges and whether he/she will be jailed or released on bond.

Tip If your care recipient is in treatment, call the detention facility and give contact information for their case manager or primary mental health professional.

Defense Attorney: The court can play a valuable role in getting mental health care for the care recipient, however, obtaining legal counsel is a critical first step. When it comes to a lawyer, cost does not necessarily mean quality. A public defender may often be the best choice unless the care recipient already has a criminal defense attorney. Be aware that public defenders have heavy caseloads, so your job is to share information in a polite and helpful manner.

Tip You can improve the outcome by informing the defense attorney about the care recipient, what you hope for, and providers who can help. If the lawyer is not available, leave a detailed voice message and follow up in writing. Remember that the attorney does not work for you, so they may not be able to share information with you. But you can share information with them that may strengthen the case.

Tip Encourage the care recipient to be honest with the lawyer even if details are embarrassing or shocking. The defense attorney needs to know any complications in order to build a solid case.

Tip Encourage your care recipient to sign a release allowing their attorney to discuss their case with you.

Criminal Charges: A criminal charge is a formal claim by a government official that a person has broken the law. A misdemeanor charge for a less serious crime carries a maximum sentence of one year or less. All other crimes are charged as felonies. Most crimes linked to untreated mental illness are misdemeanors, although it is common to have felony charges for resisting arrest, assault, or drug related crimes. A felony conviction severely limits options for housing and other public benefits after release from jail or prison. Many charges, however, are dismissed, or downgraded, before the individual goes to trial.

The courts: If your care recipient is charged with a crime, they will go before a court. If the crime was serious or complex, the care recipient may have a number of hearings. The process can take months. If they plead “not guilty” and choose a jury trial, the process can take longer. If your family member chooses a plea bargain, it means they plead guilty or “no contest” and may receive a more lenient sentence.

Tip By showing up in court you can boost the care recipient's morale. You also show that the defendant has people to help them keep things stable, which may influence the judge's sentence.

Psychological evaluation: The U.S. Constitution bans courts from trying individuals or otherwise resolving cases of persons who may not be competent to understand the nature of the charges that have been filed against them or to participate meaningfully in their own defense. At any point, the judge can order a psychological evaluation to decide whether a defendant is competent to stand trial. These evaluations sometimes take place in hospitals, in jails, and for less serious crimes, in the community. During a forensic or psychological evaluation, the case is on hold. At that point, the defendant may wait in jail for weeks or months.

For serious crimes, the defense may request an evaluation to determine whether a person's mental health status at the time of the crime was so severe that an insanity defense, or another defense raising mental illness as a mitigating or justifying factor, may be used. “Competency” and “Insanity” are different legal issues. “Competency” pertains to a person's capacity to proceed to trial. “Insanity” addresses whether a person's psychiatric condition at the time of the crime can be used as a defense.

Sentences are a legal order for punishment. The purpose is to hold the person accountable for the crime and to discourage further criminal activity. Frequently, sentences include fines, probation, mental health or substance abuse treatment, community service, or incarceration.

Tip Work with the defense attorney to advocate for mental health treatment as part of the sentence. Share information on treatment, training, or self-help groups the care recipient has attended.

Tip If appropriate, offer to vouch for the care recipient's character. Provide contact information for other character witnesses.

Probation is a suspended jail sentence that allows the defendant to serve time in the community under a court order and supervision by a probation officer. Court requirements may include participation in treatment, staying clean and sober, community service, meeting with the probation officer, or attending court hearings. Probation can be revoked if the conditions are not met. The judge could order the probationer to jail or add requirements to the probation.

Tip Work with the defense attorney to advocate for treatment as a condition of probation. Provide contact information for service providers. Give specific names, phone numbers, and emails to make it as easy as possible to reach these providers. If possible, offer options for housing and employment.

Incarceration may require the care recipient to spend time in jail or prison. There are significant differences between the two, especially when it comes to someone with mental illness.

Solitary confinement, or segregation, is used to manage difficult or dangerous prisoners. Inmates with mental illness are more likely to be segregated in isolation cells, often for months or years, with little or no treatment.38 Solitary confinement is hard on anyone, but people with mental illness suffer terribly, often to the point of self-harm or suicide.

Tip If your relative is in solitary confinement, do whatever you can to get them out. For expert help, contact your state's:

Reentry: Jail release can happen within hours of the order. You can prepare by gathering a set of clothes, toiletries, birth certificate, driver's license or state photo ID, social security card, and a pre-paid mobile phone with numbers for family, friends, and service providers. It is also wise to gather information to help the care recipient apply for income support, health benefits, food, housing, treatment, transportation, education, and other basic necessities.

A prison release date is known in advance. Prison personnel should help the care recipient with transitional housing and other benefits and services, but your assistance can further ensure that needed supports are in place. Re-entry after a prison sentence is difficult because certain crimes, such as felony drug crimes, impact eligibility for essential services such as housing, food, income, and employment. Learn More: www.nami.org/Find-Support/Living-with-a-Mental-Health-Condition/Reentry-After-a-Period-of-Incarceration

Conclusion

The criminal justice system can be traumatic and dangerous, but your support can make a difference. Research shows that people involved in the criminal justice system are more likely to succeed in the community and less likely to re-offend, if they have at least one person who stands by them. You can make that difference by staying connected to the care recipient, and by offering to help law enforcement, legal, and mental health personnel obtain information and assistance to strengthen the case.

Helpful Websites

Fact sheet number wheel: 10
icon: stopwatch

10: Planning for the Future

Introduction

Caring for someone with a mental health condition can be a lifelong journey. There is a growing population of older caregivers providing support to people with mental illness, most often parents who care for adult sons or daughters over extended periods. As these families age they face unique needs and challenges in planning for a future time when the primary caregiver passes away or can no longer continue providing care due to their own age-related needs.

If you are in this situation, you are not alone. About a quarter of caregivers in a national study of caregivers of adults with mental health conditions were 65 and older.39 Among aging parents of adult children, most said their son or daughter was financially dependent on family and friends (64%). Less than a third (32%), however, reported having future plans in place. Only 35% said their care recipient could rely on other friends and family to help.

Uncertainty about the future is a constant source of stress for older caregivers, as well as the person with mental illness and other family members. Lack of planning can result in abrupt and traumatic transitions, sudden loss of critical support, and legal and financial difficulties. Planning cannot guarantee the future, but it can relieve stress and enhance the likelihood of positive outcomes for people with mental illness.

What Is Future Planning?

Future planning involves identifying hopes and concerns about the future of the care recipient and making arrangements to achieve the desired outcomes. It is best to think of it as an ongoing process:

What Planning Is Needed?

Planning will vary based on the unique circumstances of each family. In general, major issues you should think about include:

  1. Benefits and Financial Planning

    Families frequently face the challenge of planning for the financial security of a person with mental illness. This typically involves researching publicly available benefits. There is a range of benefits that the care recipient may be eligible for but may not be receiving. Moreover, if their household composition or financial status changes in the future, they may become eligible for benefits — particularly benefits based on low-income and assets, referred to as ‘means-tested benefits.’ Many benefits exist outside of the mental health system — for example, Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid, Medicare and Medicare Savings Programs (that assist with Medicare cost-sharing and deductibles), Supplemental Nutrition Assistance Program (SNAP), and low-income housing assistance programs.

    An older caregiver may also be eligible for benefits from the aging service system. In particular, a program called the National Family Caregiver Support Program, administered through local area agencies on aging, was recently amended to provide support for older caregivers (age 55 and older) caring for adult relatives with disabilities, including mental illness.

    A common challenge that families of people with mental illness face is how to leave financial assets to their family without jeopardizing their eligibility for current or future means-tested government benefits – such as SSI and Medicaid. Fortunately, there are very specific legal and financial tools that can help you avoid jeopardizing the care recipient's eligibility for these programs while ensuring that money is available for their ongoing needs. Below are some common tools that families use. It is important to note, however, that most attorneys and financial planners are not experts in this area. It is critical to seek out knowledgeable professionals who understand disability benefits and have experience in using these tools to ensure they are set up correctly. Tools available include:

    Special needs trusts
    A special needs trust is a specific type of trust designed to support people with disabilities, including mental illness. There are certain limits on purchases that can be made with trust funds. In general, they can be used to cover a range of supplemental goods and services not covered by SSI and Medicaid. For example, special needs trust funds may cover supplemental therapies, assistive technology, transportation, recreational activities, and other support that enhance quality-of-life. Family members (or other third parties) can place money into a special needs trust via gifts, inheritance, or through the proceeds from life insurance. Since finances in the trust do not count as assets, individuals maintain their eligibility for means-tested government benefits.
    Pooled trusts
    Pooled trusts operate in a similar manner to special needs trusts. The difference is that, instead of being established by individuals and families, they are established by non-profit organizations for the purposes of investment. Although the funds placed in a pooled trust are invested collectively, each beneficiary's account remains their own. Depending on the trust, beneficiaries might also receive other services and support from the non-profit agency.
    ABLE accounts
    Achieving a Better Life Experience (ABLE) accounts are special savings accounts that allow people with disabilities to save for disability-related expenses. As with special needs trusts, individuals and family members can make contributions to the account within certain limits. Accounts also allow for a range of disability-related expenses without jeopardizing access to means-tested government benefits. ABLE accounts are modeled after Section 529 college savings plans. Therefore, one advantage over special needs trusts is that money in the ABLE account works as a savings vehicle and grows tax free. Not all people with mental illness, however, will qualify. Individuals must have a significant disability with an onset that occurred before the age of 26.
  2. Residential Planning

    Among parents of adults with mental illness, most lived within 20 minutes of their son or daughter (74%). Almost half of caregivers in a national study said that the person they cared for lived in their household (45%). More than half of the caregivers whose care recipient was financially dependent on family and friends, reported that the care recipient lived in their household (52%).

    As a family caregiver, it is important to plan where the care recipient will live in the future. Depending on circumstances, you may face questions such as:

    • Where does the care recipient desire to live in the future? If they move, will it impact services and support they may be receiving?
    • If the care recipient lives in the family home, can that continue? What formal and informal support will need to be put in place to make this happen?
    • Will the care recipient reside with another family member, such as a sibling? Have there been any conversations with that person? Is the care recipient willing and prepared for the transition ahead of time?
    • Will the care recipient live independently in an apartment, home, or in a supervised group setting? Has the care recipient or caregiver applied for, or been placed on, a waiting list for low-income housing support or residential support from the mental health system?
  3. Support Networks

    People with mental illness and family caregivers who have provided care for many years have often cobbled together networks of support, most often informal networks due to inadequacies in the service system. Planning can explore these circles of support and invite others to play key roles in the future to maintain and strengthen them.

    Key areas of support that may need to be explored include:

    • Care coordination: More than eight in ten caregivers say they actively manage the health care details of their care recipient, according to a national study of mental health caregivers. They act as default care coordinators – handling finances, paperwork, forms, bills, payments, health insurance, medication management, appointments, and crisis care. They often hold institutional memory about medication, treatment, and medical history – what has worked in the past and what has not. It is important to document this history, identify who will assume greater responsibility in the future, and pass this history on to ensure continuity of care.
    • Decision-making supports: Depending on your personal circumstances, you may already have some form of decision-making supports in place, such as representative payee, powers of attorney, trusteeship, or guardianship. It is important to examine this support and identify individuals who will assume these roles in the future in the event that a caregiver can no longer continue. In addition, legal documents should be re-examined and modified to identify successors.
    • Instrumental supports: Family caregivers frequently provide significant day-to-day support, such as grocery shopping, cooking, housekeeping, laundry, recreation, socialization, and transportation. It is important to identify all the roles you are playing and identify how to continue these roles through other formal and informal support networks.

Taking the First Step

Some families face significant barriers to planning.41 Some of these include:

Connecting with other families in similar situations can be extremely helpful in overcoming some of these barriers.42 Local chapters of the National Alliance on Mental Illness (NAMI) and other disability advocacy organizations occasionally hold workshops on future planning for families of people with mental illness. They may also be of assistance in local referrals to legal and financial planning experts.

Another step that has been helpful for some families is the development of what is called a “Letter of Intent.” A letter of intent is not a legal document. It doesn't cost money or require going to legal and financial professionals. It is a person-centered planning tool intended to start a discussion. It helps families document their family history, begin discussions within the family and circles of support, envision dreams for the future, and begin identifying goals to ensure support is in place. The first step is the hardest: starting with a letter of intent can help some families begin the process.

Helpful Websites

Fact sheet number wheel: 11
icon: stick person holding hands with stick person in a dress

11: Confidentiality and Family Involvement

Introduction

As a family caregiver, you can play an important role in supporting mental health treatment, yet you may find that communication with mental health professionals is limited by confidentiality policies. Although the goal of health privacy laws is to protect the rights of the person in care, a narrow interpretation of these laws can keep you from giving or getting information to help the care recipient.

Federal and state health privacy laws allow mental health service providers to share information with families or other informal caregivers, based on defined standards and professional judgement.43 Nonetheless, it is common for family caregivers to feel excluded from the mental health treatment process. In a study of caregivers of adults with mental illness, more than half (54%) of the respondents had been told that their relative's mental health professional could not talk with them.44 In spite of the challenges, there are steps you can take to open the lines of communication with treatment providers while respecting the rights of the care recipient.

Tips for Family Involvement

As with so many things, planning is essential. Work with the care recipient to plan how the communication should flow. Build a working relationship with mental health providers and learn how the law limits, or allows, the sharing of treatment information.

Help the person with a mental health condition designate a caregiver to be involved in treatment. The first step is to talk with the care recipient about the value of your support in the treatment process. This may be difficult if the symptoms of their mental illness include fear or anger. You can, however, prepare by finding a time when things are relatively calm. Another good time for this discussion is after a crisis has been resolved, while the desire to have a better outcome is still fresh. Keep the conversation simple and friendly. It may take several conversations to help the care recipient adjust to the idea of you or others being involved in their treatment. Above all, do not try to have the conversation while the care recipient is experiencing intense symptoms or building toward a crisis.

Discussion Questions

Whether to complete a ‘consent to release information’ form. An online version may be available from the agency or mental health provider's website. Once the form is completed and signed, make copies for them and for you. Mail or deliver the original to the provider.

How can a good working relationship with the mental health care provider or treatment team be built? Talk with the care recipient about arranging an appointment that includes the care recipient, the provider, and the designated caregiver. The purpose of the meeting is to establish contact, build trust, lay out goals, and agree on procedures, such as, what should be communicated, by whom, how often, and in what situations.

Health Privacy Laws

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a federal law governing health insurance and providers. Under HIPAA, a healthcare provider may share relevant information with a family member or other caregiver if the person in care:

Providers can only share what is necessary or directly related to the caregiver's involvement in care. Examples include: appointment times, medication instructions, or crisis arrangements. The care recipient's direct permission is required to share psychotherapy notes, except in cases of abuse or “duty to warn” (a threat of harm to self or others).

Can family members or friends give information to the provider?

Yes. Family members or other supporters have the right to communicate any information they believe would be relevant for treatment. Everyone is busy, so it is helpful to prepare what you want to share so that you can efficiently convey the information. The provider can choose not to explain how, or if, the information will be used, or even acknowledge that the person is in treatment.

Are providers required to get a signed release before sharing relevant private health information with caregivers?

No, they are not required. Under HIPAA, however, providers have the option to:

What if the person in care does not want family or other caregivers involved?

Mental health treatment is sensitive and private. It is not unusual to feel vulnerable when experiencing depression, anxiety, or psychosis. As hurtful as it seems, some people with mental illness may not trust their families. It is also important to remember that not all families are supportive or involved, and others may behave in ways that make the person's challenges even harder to overcome.

If the person in care is of age to make treatment decisions45 and the provider believes he/she has sound judgment, the provider must not share protected health information with the caregiver if the person does not grant them the permission to do so.

If the provider decides the person does not have the capacity to make decisions, information may be shared with family caregivers, but only if the provider believes it is in the person's best interest. A court order is not required.

What about substance use treatment?

Federal confidentiality law concerning alcohol and drug treatment is more stringent than HIPAA. Known as ‘Section 42 C.F.R. Part 2’ the law requires a provider to have specific written permission from the person in care before disclosing substance use treatment information.46

If the care recipient has a substance use condition, in addition to a mental health condition, this may complicate confidentiality because a provider agency may develop a general health information privacy policy that uses the stricter substance use treatment privacy law for care recipients. If the stricter privacy policy interferes with mental health treatment in a way that seems contrary to HIPAA, it may be helpful to ask the clinic director to consider a more open policy.

Do states have laws on confidentiality in mental health care?

Every state has laws governing the confidentiality of mental health information. Some only apply to specific circumstances such as state psychiatric hospitals, while others apply to all mental health care. When there is a difference between state and federal confidentiality laws, the stricter standard applies.47

Planning Tools

You can help the care recipient use the following tools to describe their preferences about services, and plan how they would like caregivers to be involved.

Wellness Recovery Action Plan (WRAP): An evidence-based process to help the care recipient recover, stay well, and lead a more satisfying life. WRAP helps the person understand what wellness looks like for them, detect early warning signs and triggers, and explore thoughts, feelings, experiences and effective responses all the way through the crisis process to relapse prevention.48 As part of the WRAP plan, the person identifies who should be involved and what support they would like. Learn more at: www.mentalhealthrecovery.com

Psychiatric Advance Directive (PAD): A legal document written by the person with a mental health condition when he/she is well and able to make sound decisions. A PAD describes treatment preferences and can designate a health care proxy to make treatment decisions should the person be unable to give informed consent due to symptoms of mental illness. Although all states provide for health proxies in general, about half offer specific procedures for mental health treatment.49 Learn more at: www.nrc-pad.org

Helpful Websites

Fact sheet number wheel: 12
icon: heart being held in hands

12: Taking Care of Yourself

Introduction

An estimated 8.4 million Americans provide care to someone with mental illness.50 Being an effective caregiver is difficult, and to meet the challenge, you need to take care of yourself. Sounds simple. Those who provide care know otherwise. There are many barriers to caring for yourself such as setting aside time, finding resources, and the tendency to put yourself last.

Taking care of yourself is the most important thing that you can do, not only for yourself, but also for the person you care for and the rest of the family. Family caregivers carry the weight of not only providing personal and instrumental care (e.g., running errands, medications), but they often have to manage other responsibilities. What do you do when you get tired? Keep going? What do you do when you need help? Keep going? What happens when you cannot go anymore? Taking care of yourself includes recognizing when you need help to balance your own physical, emotional, financial, social, and spiritual needs.

Background: Mental Health Caregivers

Mental health caregivers experience many challenges. You are not alone. Millions of other caregivers express high levels of stress, financial issues, isolation, and concerns for the future. Studies of the caregivers of adults with mental illness found that:

Challenges Facing Mental Health Caregivers

What You Can Do to Take Care of Yourself

There are several ways you can care for yourself as you continue your caregiving journey. The National Alliance for Caregiving (NAC) provides a Caregiver Health Self-Assessment Questionnaire (English or Spanish) on their website. The tool helps you look at your own situation, consider options, and make decisions that will allow you to take care of yourself within the context of your caregiving responsibilities.

Caregiver Health Self-Assessment Questionnaire – EnglishCaregiver Health Self-Assessment Questionnaire – Spanish

Physical Health

Taking care of yourself includes physical activity, sleep, and diet, at a minimum. Physical activity has many benefits that are well documented, although for caregivers, it is difficult to find the time to fit it in. A short walk can bring benefits and can be accomplished with a mindful approach and some planning. The following are some tips to include regular physical activity:

Spiritual Health

Attending to your spiritual side can take many forms, including prayer, meditation, yoga, spending time in nature, personal writing, or attending worship services. The main benefit of spiritual practice for caregivers is the time you dedicate to yourself. One thing we know about caregiving is that it leaves very little time for you. There are many ways to infuse spiritual activities into daily life:

Emotional Health

Caregiving can be an emotional journey. It is critical to recognize when you need emotional support from friends, family, or others who are on a similar journey. Knowing that you are not alone and that others are there for you can provide much-needed comfort. Taking care of yourself emotionally will allow you to find the strength to continue your journey as a caregiver. There are many ways to improve your emotional health:

Financial

Taking care of yourself means taking care of your finances. Caring for a care recipient can often mean out-of-pocket expenses that quickly add up. Meeting with a financial advisor can help you feel more in control of your finances and even help you make informed decisions about your care situation. Financial advisors can be found at your local bank, or local aging network groups such as senior centers or your Area Agency on Aging.

Helpful Websites