OF CARE A GUIDEBOOK FOR MENTAL HEALTH CAREGIVERS

National Alliance for Caregiving

OF CARE

Welcome

The National Alliance for Caregiving is pleased to present Circle of Care: A Guidebook for Mental Health Caregivers. It was developed with generous support from the Alkermes Inspiration Grant Program, to whom we are most grateful.

The Circle of Care guidebook emerged from the national study on mental health caregiving, On Pins & Needles: Caregivers of Adults with Mental Illness. This study was conducted with the assistance of the National Alliance on Mental Illness and Mental Health America and released in February 2016. It was the first national survey of mental health caregivers conducted in the United States: it identified numerous challenges faced by these caregivers. You can learn more about this study in the first fact sheet in this guidebook: 01: About Mental Health Caregiving.

Like our other resources for family caregivers, Circle of Care is designed to guide unpaid friends, family, and neighbors who care for someone with a mental health condition. The fact sheets are intended to assist these caregivers with finding help for the specific challenges identified in the On Pins & Needles study.

As we continue to work to support caregivers, we welcome your feedback and ideas on this work and others. It is our mission to advance family caregiving through research, innovation, and advocacy so that families across the spectrum of health and long-term care can have an improved quality of life.

National Alliance for Caregiving www.caregiving.org [email protected] 301-718-8444

www.caregiving.org/circleofcare 1 OF CARE

Acknowledgements

The National Alliance for Caregiving is proud to present Circle of Care: A Guidebook for Mental Health Caregivers.

This guidebook was made possible through the contributions and direction of the following subject-matter experts in caregiving and mental health:

National Alliance for Caregiving Rick Greene, M.S.W., Executive Advisor and Project Director C. Grace Whiting, J.D., President and CEO Maja Pašović, M.A., M.Ed., Special Assistant to the CEO

Authors and Subject-Matter Experts Sita Diehl, MA, MSSW, LAPSW, Former Director, Policy and State Outreach, NAMI Kelly Niles-Yokum, Ph.D., Associate Professor of Gerontology, Director: Gerontology Program, University of La Verne Joe Caldwell, Ph.D., Director, Long-Term Services and Supports Policy, National Council on Aging

Reviewers, National Alliance on Mental Illness (NAMI) Teri Brister, Ph.D., L.P.C., Director, Information and Support Jessica W. Hart, M.S.W., Senior Manager, Field Advocacy Angela Kimball, National Director, Advocacy and Public Policy Hannah Wesolowski, Director, Field Advocacy

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Table of Contents

Welcome ………………………………………………………………………………………………………………………………… 1

Acknowledgements ………………………………………………………………………………………………………………… 2

Fact Sheets

01: About Mental Health Caregiving ………………………………………………………………………………… 4

02: Economic Impact of Mental Health Caregiving …………………………………………………………… 7

03: Finding the Right Provider ………………………………………………………………………………………… 10

04: Communicating with Health Professionals ………………………………………………………………… 15

05: Getting an Accurate Diagnosis ………………………………………………………………………………… 20

06: Hospital Discharge Planning ……………………………………………………………………………………… 24

07: Health Insurance ……………………………………………………………………………………………………… 27

08: Community Services ………………………………………………………………………………………………… 30

09: Dealing with the Criminal Justice System ………………………………………………………………… 35

10: Planning for the Future ……………………………………………………………………………………………… 40

11: Confidentiality and Family Involvement …………………………………………………………………… 45

12: Taking Care of Yourself ……………………………………………………………………………………………… 49

www.caregiving.org/circleofcare 3 OF CARE fact sheets

01: About Mental Health Caregiving

Introduction Findings As many as 8.4 million Americans act as According to the study, the average mental caregivers to adults with emotional or mental health caregiver is roughly 54 years old, health conditions.1 Studies have shown that falling in the majority category of caregivers mental health caregivers often have a heavier who are aged 45 to 64 years old.3 The most burden of care and higher stress levels than common type of mental health care is the the typical family caregiver.2 one provided to a family member (88%) or, more specifically, to an adult son or To investigate the experiences and hurdles daughter (45%). The average mental health encountered by these “mental health” care recipient was around 46 years old, caregivers, the National Alliance for despite the fact that most care recipients Caregiving (NAC) partnered with Mental fell in the 18 to 39 age category (58%). The Health America (MHA) and the National typical mental health caregiver provided Alliance on Mental Illness (NAMI) to survey an average of 32 hours of care per week, caregivers of adults with mental health over a 9-year caregiving journey.4 These conditions. The purpose of this national results indicate that mental health caregivers study was to understand experiences, 1 Hunt, GG; Greene, R; address their care recipient’s needs for Whiting, CG (2016). On and identify challenges, that occur to this Pins & Needles: Caregivers more hours a week and more years on of Adults with Mental specific group of caregivers. In September Illness. National Alliance average than the typical family caregiver. for Caregiving. pp. 26-27. 2015, the study collected data from 1,601 http://www.caregiving. org/wp-content/ adult caregivers who provide care to a Approximately 45% of mental health uploads/2016/02/ NAC_Mental_Illness_ friend or family member with a mental caregivers live with the care recipient, and Study_2016_FINAL_WEB. pdf health condition such as depression, nearly half of them report that the recipient 2 National Alliance for Caregiving (2015) bipolar disorder, schizophrenia, or other is financially dependent upon them. Parent Caregiving in the U.S. http://www.caregiving.org/ conditions. The resulting report, On caregivers of adult children with mental caregiving2015/ Pins & Needles: Caregivers of Adults with health conditions report higher levels of 3 Ibid. 4 National Alliance for Mental Illness, was published in 2016. stress and burden compared to other family Caregiving (2015). On Pins & Needles: Caregivers of caregivers. These caregivers also report adults with mental illness. p. 5. that caregiving-related tasks have made

4 www.caregiving.org/circleofcare 01: About Mental Health Caregiving

their own health worse (62%). This can also stress levels and could lead to negative be attributed to the fact that a majority health outcomes. Forty percent (40%) of of these caregivers have no plans in place mental health caregivers reported finding for someone else to care for their adult it difficult to take care of their own health, child in the event that they can no longer and more than half reported that caregiving do so (68%).5 In addition, 65% reported made their health worse.7 These results that there is no other family member or highlight the need for additional services friend for their adult child to rely on for and support for mental health caregivers. assistance. The above statistics are also Addressing the health and overall well-being higher compared to numbers reported by of caregivers is not only important to the family caregivers of adults with other medical caregivers but to the person(s) they care for. conditions. These troubling statistics further increase the need for additional services or Twenty-five percent (25%) of mental supports necessary to assist mental health health caregivers also indicated they caregivers and to provide options for care had trouble finding the needed services recipients in the event that their main, or for their family member’s care. Because sole, caregiver is unable to care for them. services were not always available in the care recipient’s local community, most More than eight in ten caregivers (82%) caregivers reported experiencing difficulties indicated that the person they care for in finding day treatment (64%) or peer manages his/her mental health condition support (58%) for the care recipient.8 with medications. Many reported Furthermore, mental health caregivers difficulties in getting the care recipient to reported difficulty in navigating the care take medications. Likewise, about four system and interacting with providers. in ten caregivers (40%) did not think, or Roughly half of caregivers reported being were not sure, that the care recipient’s told that the health care provider or mental health symptoms were diagnosed professional was unable to speak to them accurately. The caregivers who believed about their care recipient’s condition (54%).9 the care recipient had an accurate Existing organizations in the mental health diagnosis (62%) indicated that it took an space are providing training and information average of 11.8 years for the diagnosis. to their members. Few of the mental health caregivers not affiliated with one Roughly half of all mental health caregivers of these organizations, however, had any found it difficult to converse with others sort of mental health caregiving training regarding the care recipient’s mental or education (39%). These unaffiliated health condition. In addition, half of these caregivers often relied on doctors or health caregivers reported feelings of loneliness care professionals (74%), or general internet and helplessness: 63% said that because of searches (38%) for information. Given their caregiving, they felt there was not enough own perceived lack of inclusion in care 6 time to tend to themselves. As stated above, conversations, such strong reliance on mental health caregivers reported higher health care professionals may have limited 5 Ibid. levels of stress and burden. Feelings of 6 Ibid. the caregivers’ own ability to learn about 7 Ibid. 8 Ibid., p.6 despair and isolation were a factor in higher 9 Ibid.

www.caregiving.org/circleofcare 5 01: About Mental Health Caregiving

their care recipient’s condition. Given the • Provide assistance to both caregivers and service system challenges that caregivers patients in navigating the mental health faced, perhaps it comes as no surprise system, with active outreach to caregivers that one of the areas that caregivers to offer information and care coordination. wanted addressed was policy support to County or state behavioral health entities, facilitate care access and navigation — as well as health insurers, can play a key both mental health coverage parity (31%) role in providing navigation assistance to and care navigator services (30%). caregivers, patients, and their families.

Policy Recommendations • Include caregivers as part of the health Acknowledging the unique challenges care team in ways that allow them facing mental health caregivers, the to understand their care recipient’s report recommends the following: diagnosis without limiting the patient’s independence. Policies and practices • Integrate mental and behavioral should fully include individuals, health questions into all health care families, providers, and supports (such assessments and provide screenings as the Open Dialogue model). at all health care check-ups for the patients and their family caregivers. • Educate and provide resources for the caregivers of persons with mental health • Encourage treatment parity for mental conditions, especially around issues of health conditions with that of other stress and caregiver health. Education medical health conditions. This may should include information about services include providing education to providers, and supports, such as short-term respite, caregivers, and patients about state one-to-one support, day programs, and and federal parity laws, and the health residential services. In addition, peer care benefits that should be covered support for caregivers can alleviate the under a patient’s health plan or isolation and stigma that many family insurance, such as clinical treatment, caregivers have expressed while caring health care services, or medications. for a care recipient with mental illness.

• Provide access to a full array of high-quality • Work to reduce the stigma of mental health behavioral and mental health services conditions through public awareness across the continuum of care, as well campaigns. People with mental health as access to community inclusion, and conditions and their families continue to vocational, educational, and peer support. feel isolated, which prevents them from reaching out to find resources and support. • Ensure patient access and reimbursement for appropriate medications to treat mental health conditions, including access to a full-range of medications and coverage for prescribed medications that work for an individual without overly-restrictive “fail first” policies.

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02: Economic Impact of Mental Health Caregiving

Introduction work. All of these issues require financial Approximately half of family caregivers in a investment. Figure 25 (see below) from national study of mental health caregivers10 the report On Pins & Needles provides an reported that their care recipient relied on interesting backdrop to this discussion. family and friends for financial support. Intricately linked to financial support were Background: The Economic Impact plans for the future. According to caregivers of Mental Illness on Caregivers in the study, 64% reported that their adult According to the World Health Organization child was financially dependent on friends (WHO), mental illnesses are the leading and family. When it came to future plans, causes of disability worldwide, accounting only 32% had financial arrangements for for 37% of healthy years lost from non- future care of their child.11 communicable diseases. The new report estimates the global cost of mental illness The economic impact of caring for a at nearly $2.5 trillion (T) (two-thirds in care recipient with mental illness can be indirect costs) in 2010, with a projected devastating: the time invested in helping increase to over $6T by 2030. What does someone attend doctors’ appointments, $2.5T or $6T mean? The entire global health helping with medications, and missing spending in 2009 was $5.1T. The annual

Figure 25: Care Recipient’s Financial Dependence Q43: How financially dependent is/was your [relation] on his/her family or friends?

10 National Alliance for Caregiving (2016) On Pins & Needles: Caregivers of adults with mental illness.

11 Ibid.

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GDP for low-income countries is less than • WISER (Women’s Institute for a Secure $1T. The entire overseas development aid Retirement) Financial Steps for Caregivers during the past 20 years is less than $2T. Financial Steps for Caregivers: What You Need to Know About Money and Retirement Finding Needed Services is designed to help you identify financial As a caregiver looking for services, there are decisions you may face as a caregiver. The mental health advocacy organizations such decision to become a caregiver can as the National Alliance on Mental Illness affect both your short- and long-term (NAMI) and Mental Health America (MHA) financial security, including your own that can help the caregiver with the first retirement. www.wiserwomen.org steps. The stigma that mental illness carries crosses many boundaries including socio- • National Family Caregiver Support economic status, racial and ethnic lines, and Program (NFCSP) was established in gender. Access to services can make the 2000 to provide support to caregivers, difference between a trajectory that is less and it has since expanded to include challenging and one that is not. Caregivers a variety of caregiving situations, report that they rely on healthcare providers including mental health. Through the and/or Internet searches to find services NFCSP, money is distributed to states and programs. When it comes to the and territories in the form of grants to economic impacts of caregiving, the barriers provide support to caregivers. www. can be challenging: addressing these acl.gov/programs/support-caregivers/ barriers requires specific knowledge. Not national-family-caregiver-support-program understanding these economic impacts can be a roadblock to services and guidance. • Aging and Disability Resource Centers are considered “single points of entry,” “no wrong doors,” or “access points” to Investigate the Following Potential resources related to long-term services Resources in Your Community and supports (LTSS). Through person- There are various tools online to access centered-counseling (PCC), individuals services through national organizations. are assisted through the process, and In addition, programs in the public sector are able to learn about the resources can also serve as access points to support available to them. www.n4a.org/adrcs mental illness care. Explore these available information and referral systems that • The National Association of Area can provide phone numbers and other Agencies on Aging provides a wealth of information on the services available. The information for caregivers, related to following include examples of services housing, home and community-based and assistance that may be of interest: services, transportation, elder law, and much more. www.n4a.org/agingservices • Eldercare Locator provides assistance to families seeking programs and services in their local communities. www.eldercare. gov/Eldercare.NET/Public/Index.aspx

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Helpful Websites AARP–Caregiving www.aarp.org/home-family/caregiving Caregiver Action Network www.caregiveraction.org Family Caregiver Alliance www.caregiver.org MentalHealth.Gov www.mentalhealth.gov National Alliance for Caregiving www.caregiving.org National Alliance on Mental Illness www.nami.org/Find-Support/NAMI-Programs U.S. Department of Health and Human Services (HHS) www.mentalhealth.gov/talk/community-conversation/services/index.html

www.caregiving.org/circleofcare 9 OF CARE fact sheets

03: Finding the Right Provider

Introduction can play a role. This fact sheet describes Finding mental health service providers can the types of mental health providers 12 Hyde, P. (2013) Report to Congress on the Nation’s be daunting, especially if the person you care qualified to deliver various services, what Substance Abuse and Mental Health Workforce for lives in a rural area, comes from a diverse to ask when searching for a provider, Issues. U.S. Department of Health and Human culture, or has specialized needs. Yet, despite and what you can do to help a care Services, Substance Abuse and Mental Health challenges, it is worth the effort because recipient gain the best value from care. Services Administration (SAMHSA). P.9. Accessed appropriate mental health care can save lives Aug. 11, 2017: https:// store.samhsa.gov/shin/ and restore hope. content//PEP13-RTC- Background BHWORK/PEP13-RTC- If you are having trouble finding qualified BHWORK.pdf As a caregiver, you can help your care 13 Hunt, GG; Greene, R; mental health service providers, you are Whiting, CG (2016) On recipient get high quality care by becoming Pins & Needles: Caregivers not alone. The mental health workforce of Adults with Mental informed about effective mental health Illness. National Alliance shortage in the U.S. has reached a critical for Caregiving. Pp. 26-27. care and the range of service providers who http://www.caregiving. point. More than half of all counties across org/wp-content/ uploads/2016/02/ the U.S. have no mental health providers, NAC_Mental_Illness_ Study_2016_FINAL_WEB. and 75% are designated as critical shortage pdf areas.12 A national study13 found that almost Service Needs and Availability 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.

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Service Needs and Availability Mental Health Care Providers There is hope. Policymakers and insurers Mental health treatment involves a range are working to expand and improve the of services including assessment, diagnosis, mental health workforce and increase the counseling, medication, support services, capacity of existing providers through: crisis response, and inpatient care. The following are common types of mental • educational grants for aspiring mental health providers qualified to deliver health professionals in return for components of mental health care: service in underserved communities; Psychiatrist (MD): A licensed physician • mental health cross-training with specialized training in diagnosis, for primary care clinicians; treatment with psychiatric medications, • expert psychiatric consultation and psychotherapy. Specialists may to guide primary care clinicians in have additional training in children and treating serious mental illness; youth, addiction, or geriatric care.

• clinics with integrated primary Advanced Practice Psychiatric Nurse and mental health care; Practitioner (APRN): A licensed master’s or doctoral level clinician qualified to assess, • tele-health services to deliver mental diagnose, plan care, prescribe and manage health specialty care to remote areas; and, medications, and provide psychotherapy. APRNs may practice independently or • effective use of allied professionals under the supervision of a psychiatrist. and peer counselors on mental health care teams. Psychiatric registered nurse (RN, BSN or MSN): A bachelor’s or master’s level If you or the person you care for cannot professional with specialized mental health find a mental health specialist, ask training, qualified to assess mental health your family doctor or local health clinic needs, plan care, administer medication, for help.14 Primary care providers can and provide routine primary medical effectively treat mild to moderate mental treatment. Nurses generally focus on 14 http://naapimha. org/wordpress/ 15 health conditions. Even for more severe wellness and healthy lifestyle choices. media/Primary-Care- Providers%E2%80%99- symptoms, your primary care provider Role-in-Mental-Health.pdf Clinical psychologist (PhD or PsyD): may be able to link your care recipient 15 Wang PS, Aguilar-Gaxiola A licensed doctoral level professional S, Alonso J, Angermeyer with a mental health specialist for the first MC, Borges G, Bromet EJ, trained to evaluate mental health status et al. Use of mental health phase of treatment. When the person services for anxiety, mood, using clinical interviews, psychological and substance disorders you care for is stabilized and a treatment in 17 countries in the evaluation, and testing. Psychologists WHO world mental health regimen established, the primary care surveys. Lancet. are qualified to diagnose mental health 2007;370(9590):841–50 clinician can continue to provide care with 16 Goodrich DE, Kilbourne 16 conditions and provide psychotherapy. AM, Nord KM, Bauer MS. guidance, as needed, from a specialist. Mental Health Collaborative Care and Its Role in Primary Care Settings. Curr Psychiatry Rep. 2013 Aug; 15(8):383. https://www.ncbi.nlm.nih. gov/pmc/articles/ PMC3759986/

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Licensed clinical social worker (LCSW): Case manager or care coordinator: A provider A licensed master’s level clinician trained trained in person-centered assessment and to evaluate mental health status, provide planning, service brokering, and obtaining psychotherapy, case management, and benefits such as income support or health advocacy. Social workers focus on the coverage. person within their social environment, including among family, peers, and • Case managers help your relative make community. the best use of mental health services, ensure that services respond quickly and Licensed professional counselor (LPC): efficiently, and obtain needed benefits A licensed master’s level clinician trained to and entitlements. diagnose, counsel, and facilitate prevention training. LPCs often work with individuals, • Care coordinators coordinate mental families, and groups in community mental health, substance use, and primary care. health centers and addiction treatment agencies. Peer support specialist: A trained, certified, Marriage and Family Therapist (MFT): provider with personal experience in A master’s or doctoral level counselor recovery who serves as a mentor to licensed to diagnose and provide demonstrate recovery, help the person psychotherapy for mental health and make sense of their experience, identify substance use conditions. MFTs treat goals, create a recovery plan, obtain individuals, couples, and families and focus needed services, and connect with peers. on managing symptoms within interactions Occupational therapist (OT): A bachelor’s or and relationships. master’s level specialist who helps the person live as independently as possible while engaging in meaningful life roles. The OT Mental Health Providers: Who Does What? teaches living skills and provides advice on PROVIDER TYPE 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

TREATMENT ELEMENT Psychiatrist practitioner Nurse nurse Psychiatric Clinical psychologist worker Clinical social counselor Professional & Family Marriage manager Case care support specialist Peer therapist Occupational specialist Employment specialist Housing person choose, obtain, and succeed at Assessment, care planning X X X X X X X work that is aligned with their interests. Diagnosis X X X X X Supported employment includes vocational Psychotherapy, counseling X X X X X X assessment, job search and placement Medication, neurological treatment X X assistance, and workplace support. Service brokering, navigation X X X Emotional support X X X X X X X X X X X X Housing specialist: A bachelor or master’s Life skills, socialization X X X level provider who helps the person Housing support X X X obtain decent, affordable housing. The Supported employment X X X housing specialist: assesses needs, goals, Crisis intervention X X X X X X and eligibility; helps secure chosen Hospital, residential treatment X X X X X X X X

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housing; obtains housing subsidies; • What approach will the provider teaches budgeting and living skills; and, take? What can the provider tell mediates with landlords as needed. you about research demonstrating effectiveness of that approach? Mental health providers may serve in private practice, community mental health • What can you expect from treatment? agencies, psychosocial rehabilitation How are goals set and results evaluated? programs, crisis response services, hospitals, or residential facilities. Services may be • What improvements can be covered by private health insurance or expected? What happens if progress public programs such as Medicare, Medicaid, is too slow or unsatisfactory? state or local government, or the Veterans • How willing is the provider to Administration. Some psychiatrists or change standard procedure to therapists only accept private payment. meet your relative’s needs?

Mental Health Care: Questions to Ask • How frequent are appointments? Empathy and responsiveness are as What is the procedure to schedule important to good mental health care extra visits when needed? Between as professional expertise. Your relative visits, can your relative (or you) will gain the best value from providers communicate by phone, email, or text? who listen, carefully explain the • What are the arrangements for treatment, and respond to concerns. emergencies? Who will respond if Consider the following questions when the provider is not available? searching for a mental health professional: • What is expected of your relative • How comfortable is your relative between visits? As a caregiver, with the provider? To what extent what is your supporting role? will the provider take your relative’s • What will be owed out of pocket? interests and concerns to heart? If cost is a concern, what about • How comfortable are you as the caregiver? a discount or sliding scale? If your relative wants you involved, how • Will the provider file insurance willing is the provider to communicate documentation or will your relative, with you? What procedures will be or you, be expected to do so? used and under what circumstances? • How will the provider protect • What are the provider’s credentials your relative’s privacy? and experience with similar conditions or populations? Additionally, NAMI offers tips to find a culturally competent mental health care • How is the provider rated by people provider: www.nami.org/culturalcompetence or organizations you respect? What about online reviews?

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Your Part in Promoting High Quality • Encourage the person you care for to Mental Health Care become as self-reliant as possible while The best mental health care comes from a still assisting as needed with practical partnership between the provider, the person help such as appointment reminders, in care, and close supporters. As a caregiver, transportation, or completing paperwork. your informed, caring, support can make all • Work with the person you care the difference. for and the provider to set up how • Learn about the mental health you will communicate if concerns condition, effective models of care, arise. Encourage them to develop a and how to support recovery. For Wellness Recovery Action Plan or free caregiver courses, see NAMI: Psychiatric Advanced Directive. www.nami.org/familytofamily • Build trust with the person you care • Help the person receiving care for, and the provider, through open, understand mental health conditions, respectful communication. As partners, treatment, and recovery skills. NAMI set communication guidelines in advance offers free, peer-facilitated, courses and collaborate on changes, if needed. and support groups: www.nami.org/ peertopeer and www.nami.org/connection

Helpful Websites Mental Health America, Types of Mental Health Professionals www.mentalhealthamerica.net/types-mental-health-professionals

National Alliance on Mental Illness (NAMI), Types of Mental Health Professionals www.nami.org/Learn-More/Treatment/Types-of-Mental-Health-Professionals

SAMHSA Treatment Services Locator findtreatment.samhsa.gov

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04: Communicating with Health Professionals

Introduction contact to be informed of, and support, As with any medical care, mental health the treatment process. Despite what you treatment works best when the care may hear, neither laws nor ethics prevent recipient follows the treatment plan. Family the person receiving care from naming caregivers can play a crucial role in treatment caregivers to support the treatment plan. engagement and often have information In fact, a growing number of states have that would enable the treatment team to enacted laws requiring hospitals to ask refine the care plan. At the same time, you patients to name a designated caregiver.18 may need information from the team to Clear communication guidelines will also understand the mental health condition, improve your ability to help the care promote treatment, and provide follow recipient benefit from treatment. To the through and practical support. extent possible, the best strategy is to work with the care recipient and the mental Background 17 Hunt, GG; Greene, R; health team to identify what information Whiting, CG (2016). On Communication with mental health Pins & Needles: Caregivers should be shared, by whom, and under of Adults with Mental providers can be challenging because patient Illness. National Alliance what circumstances. Planning ahead helps for Caregiving. pp. 26-27. confidentiality is protected by health privacy http://www.caregiving. you arrange practical steps to meet the org/wp-content/ laws. For example, a national study of mental uploads/2016/02/ care recipient’s needs while conforming to NAC_Mental_Illness_ health caregivers found that most caregivers Study_2016_FINAL_WEB. professional ethics and legal standards. pdf (71%) turned to a health care professional 18 Caregiver Advise, Record, Enable (CARE) for help or information about care, yet Act: http://www.aarp.org/ How Confidentiality Law Protects politics-society/advocacy/ more than half (54%) had been told that caregiving-advocacy/info- 2014/aarp-creates-model- a mental health provider could not speak and Permits Communication Federal health privacy law19 protects client state-bill.html with them. More than half said they were 19 Health Insurance confidentiality, including defining who can Portability and included in care discussion less often than Accountability Act of 17 have access to protected health information 1996 (HIPAA). HIPAA they felt they should have been (55%). Privacy Rule and Sharing and under what circumstances. Although Information Related to Mental Health. https:// The person you care for can sign an the Health Insurance Portability and www.hhs.gov/hipaa/ for-professionals/special- Accountability Act (HIPAA) limits sharing topics/mental-health/ information release designating you as a index.html

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information when the person does not want professionals, although, because they are others involved, the law allows broader busy, it is wise not to contact them more communication than most people realize. than necessary. Due to confidentiality One exception is for substance use treatment procedures, the provider may or may not where confidentiality standards are more acknowledge the information you share, restrictive than for health or mental health but your message will still be considered. care.20 To learn more, see the fact sheet on Confidentiality and Family Involvement (pg. 45). Communication Plan Federal health privacy law allows providers to For communication to flow smoothly, it is share on a ‘need to know’ basis if the client: wise to work out an agreement with the care recipient and the treatment team. • Gives permission to the provider, and Identify the purpose of communication to the extent allowed by the release. — for instance, to preserve stability and support recovery — and then specify • Is present and does not object what should be communicated, by whom, to sharing the information. and under what circumstances. Even if • Is not present but the provider you have health care power of attorney, decides that information sharing legal guardianship, or conservatorship, is in the client’s best interest. it is best to respect the care recipient’s preferences to the greatest extent possible. A written release is always best but as an alternative, the provider can: STEP 1: TALK WITH THE PERSON YOU CARE FOR about the value of caregiver • Ask the person for verbal consent support in the treatment process and the to share information. need to communicate with providers. Make it clear that you only need practical • Inform the person of your plan information to help them follow through on to discuss information and give treatment such as managing appointments, them a chance to object. addressing transportation needs, helping • Gather from the situation that file insurance claims, paying bills, or the person does not object. gathering information on the prescription regimen. Keep notes of the conversation Examples of information that may on paper, or in a computer file. be shared include hospital discharge dates, appointment times, medication Timing is everything. Talk when things instructions, or crisis plans. The person’s are going well or after a crisis has been

20 For more information direct permission is required to share the resolved and the desire for a better on substance use treatment confidentiality content of therapy sessions, except in cases outcome is still fresh in mind. If the see the Frequently Asked Questions (FAQ) offered of abuse, or threats, to another person. person is nervous, emphasize that the by the Substance Abuse and Mental Health plan can be changed as needed. Services Administration No permission is required for you or (SAMHSA): https://www. samhsa.gov/about-us/ other supporters to give information to who-we-are/laws/ confidentiality-regulations- the care recipient’s mental health care faqs

16 www.caregiving.org/circleofcare 04: Communicating with Health Professionals

Stay positive. Express how much you care. Talk with your relative and the provider Explore how you can support treatment about what information may be shared. and preserve the care recipient’s dignity. The provider’s disclosures will be limited Ask what you already do that is helpful, to practical information directly relevant to what else your relative would like, and your involvement in, or payment for, your what should be avoided. Discuss what to relative’s care. Your communication to the do if safety is at risk. Describe your own provider will be limited to practical details, hopes, concerns, and needs as a caregiver. observations, and concerns about safety.

Keep it simple. Set one or two goals with the Agree on modes of communication. Find person you care for and talk through how out whether the provider would like to the goals will work. If there are several goals, receive messages by telephone, email, have more than one conversation. If you have or another format. Some providers requests, make them one at a time and give have an electronic patient portal with plenty of opportunity to clarify and discuss. appointments, prescriptions, test results, and the ability to send a secure email. Listen with an open mind. Summarize the essence of what the person says Attend a team meeting. Find out whether without adding judgement or advice. it would be helpful for you or another By listening more than you talk, the caregiver to attend a meeting with the care person you care for will feel respected recipient and the provider to discuss your and will be more likely to openly express caregiver role. Plan when and where. thoughts, feelings, and wishes. Be open with your relative. If you plan to Own your feelings: Use ‘I-statements’ to communicate with a provider, explain what express your feelings: “I feel [emotion] you intend to share, and why, in a gentle, but when you [behavior].” You may continue, straightforward, way. Honesty builds trust. “How can we resolve the problem in a way that is okay for both of us?” This STEP 3: REVIEW THE PLAN REGULARLY. method reduces blame and conflict. When the initial release form and communication plan are completed, Invite a neutral listener: If tensions are set a follow up appointment with your running high, invite another trusted person relative and the provider to assess how to help the care recipient feel more secure. well things are going and what may need to be changed or added. It is STEP 2: COMPLETE AN INFORMATION important for your relative to know in RELEASE FORM. Help your relative get advance that the plan can be adjusted. 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.

www.caregiving.org/circleofcare 17 04: Communicating with Health Professionals

Record Keeping • Phone log: Note the date and time As a caregiver, you may have valuable you spoke with any provider on the information that could affect care such care recipient’s behalf, the topic of as how the person you care for responds discussion, and any action you or to therapy or medication, life changes, the provider agreed to take. stresses, or successes. By keeping written • Email file: Print emails and file them in records, you create a resource to help the date order or copy and paste them into care recipient get the best possible results. a running document on your computer. Keep health information in one place • Behavior change log: Record the date using a format that fits into your daily life and time you noticed any marked such as a three-ring binder, file folders, changes in behavior, sleep, appetite, computer files, or an electronic personal medication response, mood, or the health record. Records may include: ability to process information. • Cover sheet: Include the care recipient’s • Meeting record: If you meet in person, note name, contact information, caregiver name(s), organization(s) and position(s) of contacts and relationship, pharmacy, those participating, purpose of the meeting, primary care doctor, mental health action plan, and any other pertinent details. provider, or other specialists. Good records give you the ability to • Medical history: Include ongoing or serious provide accurate information and promote medical conditions, allergies, past injuries, continuity of care. It is best to work with the treatments, and family medical history. person you care for, the goal being to help • Medication record: List the care them lead a satisfying life as they define recipient’s medications and directions it. An open partnership builds a trusting for administering these medications. relationship that will help the care recipient What is the purpose of the medication? gain the most value from treatment. How well does it work? Include the prescriber(s) name and contact information. List any medication allergies, past prescriptions, and reasons for change.

• Appointment record: Keep track of appointments. If the person you care for needs reminders or transportation, enter the appointments on your calendar.

• Hospitalization record: If the care recipient has been in a hospital or residential care facility, record the facility name, address, admission and discharge dates, attending physician, social worker, and the discharge plan. 18 www.caregiving.org/circleofcare 04: Communicating with Health Professionals

Helpful Websites HHS Office of Civil Rights; Sharing Health Information with Family and Friends www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/ consumers/sharing-family-friends.pdf

National Alliance for Caregiving. On Pins & Needles: Caregivers of Adults with Mental Illness www.caregiving.org/mentalhealth

National Alliance on Mental Illness. Find Support — Family Members and Caregivers www.nami.org/Find-Support/Family-Members-and-Caregivers

SAMHSA: Supporting a Friend or Family Member with Mental Health Problems. HHS, Substance Abuse and Mental Health Services Administration www.mentalhealth.gov/talk/friends-family-members/index.html

www.caregiving.org/circleofcare 19 OF CARE fact sheets

05: Getting an Accurate Diagnosis

Introduction treatment if the care recipient’s symptoms An accurate diagnosis is the first step to are mild to moderate or if there are no effective mental health care. Mental health mental health specialists in your community. professionals use the diagnostic process to Two groups of specialists are qualified develop a treatment plan that is most likely to diagnose mental health conditions: to help the care recipient. A diagnosis is often comforting because at least it provides a 1) Prescribers who mostly focus name for the difficulties the care recipient is on medication, and, experiencing — and a path toward relief. 2) Therapists or counselors who conduct Diagnosis serves other purposes as well. psychotherapy or ‘talk therapy.’ A diagnosis is necessary before insurance will cover mental health care. It is also Mental Health Prescribers required to qualify for disability support through Social Security or for job protection • Psychiatrist: A medical doctor with a under the Americans with Disabilities degree from an accredited medical school Act. Finally, you, and the person you care who specializes in the diagnosis and for, can use the diagnosis to learn more treatment of mental health conditions. A about the mental health condition and psychiatrist will conduct the diagnostic take steps to pave the way for recovery. interview, prescribe medication (if needed), and order lab work to make sure the Who Can Diagnose? medication is balanced. Psychiatrists Several types of professionals are qualified to don’t often conduct psychotherapy, but diagnose mental health conditions. It is best they may coordinate a treatment team of to start with the care recipient’s primary care therapists and other service providers. physician. If the care recipient doesn’t have a • Psychiatric Nurse Practitioner: A registered physician, connect with your local community nurse with a graduate degree from an health center. The primary care physician may accredited program and specialized training conduct an initial assessment and administer

20 www.caregiving.org/circleofcare 05: Getting an Accurate Diagnosis

in the diagnosis and treatment of mental to explain the symptoms, the doctor may health conditions. The nurse practitioner refer to a mental health specialist or seek provides many of the same services as advice from a mental health expert. a psychiatrist. A nurse practitioner may refer to a psychiatrist when the patient The next step is a psychological also has other medical conditions, or when assessment (conducted by a licensed controlled medications (such as narcotics) mental health counselor) or psychiatric are part of the treatment regimen. evaluation (conducted by a psychiatrist). The diagnostic process includes:

Mental Health Counselors • Psychological assessment: Clinician interview of the care recipient to see how • Psychologist: A licensed mental health he or she thinks, feels, acts, and relates to professional with a Ph.D. in clinical, others. This assessment should include counseling, school, or other specialty input from the family. areas in psychology from an accredited graduate program. Psychologists • Psychological tests: Standardized conduct psychological evaluations, questionnaires and checklists that can help diagnose mental health conditions, and identify and measure symptoms. provide individual and group therapy. • Family history: Usually a checklist about • Clinical Social Worker: A clinician with a illnesses in the family, including mental master’s degree in clinical social work from illnesses in other family members. an accredited graduate program. Clinical social workers conduct assessments, • Personal experiences: Review of current diagnose mental health conditions, stresses and history of traumatic experiences. provide individual and group counseling, • Other medical conditions: Assessment to case management, and client advocacy. reduce the risk of mental health treatment • Licensed Professional Counselor (LPC): affecting other conditions. In addition, A counselor with a master’s degree in some medical conditions mimic mental illness. psychology, counseling, or a related The clinician typically refers to the Diagnostic field. Licensed Professional Counselors and Statistical Manual of Mental Disorders are trained to diagnose and provide (DSM) when making a diagnosis. The DSM individual and group counseling. is a catalogue of mental disorders published by the American Psychiatric Association. What Does the Diagnostic Process Providers may also refer to the International Involve? Classification of Diseases (ICD). A thorough evaluation should begin with a primary care physician who will conduct Your care recipient may receive more than a physical exam and administer lab tests one mental health diagnosis. This is because to rule out other medical conditions symptoms of mental health conditions with symptoms that can look like mental overlap. It may not be clear whether one or illness. If the physical examination fails more diagnoses explain the symptoms the

www.caregiving.org/circleofcare 21 05: Getting an Accurate Diagnosis

care recipient experiences. The person you care for has the right to a second opinion if the provider does not Be prepared for the process to take time. respond, or if you question the diagnosis and Because no lab tests are yet available recommended treatment. Be sure to ask the to definitively diagnose mental health health insurance company whether second conditions, mental health professionals opinions are a covered benefit for mental rely on training, psychological tests, and health conditions. You may have to pay out their clinical experience to determine how of pocket, but it may be worth the expense. symptoms fit into possible diagnoses.

The diagnosis may change. As the clinician As a Caregiver, How Can I Help? works with your care recipient over time, If the care recipient agrees, it is helpful for patterns of thought, feeling, or behavior may them to complete an ‘information release’ emerge that indicate a different diagnosis. or ‘consent to release information.’ This legal document allows you to communicate with The Person I Care For Has a Diagnosis, the treatment team. The care recipient has but It Doesn’t Seem Right the right to decide who should be involved, Recent research21 showed that four in ten for how long, and what types of information caregivers of adults with mental health can be shared. Because clinics or private conditions felt the person they cared for providers often have their own information may not have had the correct diagnosis. release form, the person you care for may Among those who thought the diagnosis have to complete more than one if treatment was correct, it took an average of eight is provided through multiple agencies years to get to that point. Fortunately, the or private practitioners. If a consent has science of early intervention in mental been signed, you may be asked to fill out a illness is advancing22 and the number of questionnaire to help identify the diagnosis. 23 effective treatment options is growing. Regardless, you can help by gathering It is important that treatment begin right information. If possible, do this in partnership away. The service provider may start with with the person you care for to build trust, an initial diagnosis and course of treatment reduce confusion, and help him/her advocate 21 Hunt, GG; Greene, R; Whiting, G (2016). to see how the care recipient responds. for the most effective care. On Pins & Needles: Caregivers of Adults with The treatment may include individual Mental Illness. National The following information can be helpful: Alliance for Caregiving. therapy, family therapy, support services, Accessed 3/5/2017: www.caregiving.org/ mentalhealth or medications. When the treatment plan • Health insurance coverage: Check the

22 ____ (n.d.) Early is developed, ask the provider how long it care recipient’s health plan for in-network Psychosis and Psychosis National Alliance on Mental should take to determine whether the plan providers in your community and for Illness, NAMI. Accessed 3/5/2017: http://www. is working. If the treatment does not seem treatments or medications that are covered nami.org/earlypsychosis to be helping within that period - or helping or excluded. 23 ____ (n.d.) National Registry of Evidence Based enough — tell the provider. Programs and Practices • Your observations: Because you see (NREPP). Substance Abuse and Mental Health the care recipient more often than the Services Administration (SAMHSA). Accessed professional, you are positioned to see 3/5/2017: https://www. samhsa.gov/nrepp

22 www.caregiving.org/circleofcare 05: Getting an Accurate Diagnosis

things that could lead to a more accurate products, or other supplements, and their diagnosis, including: dosages.

• What the care recipient is doing or saying • Family history. Medical and mental health that raises concerns. conditions in ancestors and other members • How long it has been going on. of your care recipients extended family. • Whether some times of day are better than others: is the condition worse at • Questions. Identify questionsbto ask the certain times of the day or year, or in mental health provider. specific situations? Finally, learn about mental health conditions, • Signs of progress: it is important to note effective treatment, communication skills, and improvement as treatment progresses. how to care for yourself. Family education • What helps in addition to treatment: for (such as the NAMI Family to Family course) example, exercise, diet, regular sleep, will help you understand what symptoms to pets, leisure or social activities or other look for, how an illness might develop, and things that reduce stress. what can be done to help. The time you take • Stressors. What is going on now that adds to educate yourself will be rewarded in greater to stress? Has the person you care for been understanding, better communication, and traumatized by past experiences? increased trust with your care recipient and others in the family. This will relieve some • Medical information. Include other physical, of your caregiving burden and increase the mental health, or substance use conditions. likelihood that your care recipient will recover • Medications. Include vitamins, herbal the ability to lead a full and satisfying life.

Helpful Websites American Psychological Association (APA) www.apa.org/helpcenter/assessment.aspx Diagnostic and Statistical Manual of Mental Disorders (DSM) American Psychiatric Association www.psychiatry.org/patients-families/understanding-mental-disorders Mayo Clinic www.mayoclinic.org/diseases-conditions/mental-illness/basics/tests-diagnosis/con-20033813 Mental Health America www.mentalhealthamerica.net/types-mental-health-professionals National Alliance on Mental Illness, NAMI • Understanding Your Diagnosis: www.nami.org/Find-Support/Living- with-a-Mental-Health-Condition/Understanding-Your-Diagnosis • Family to Family: www.nami.org/Find-Support/NAMI-Programs/NAMI-Family-to-Family WebMD www.webmd.com/mental-health/mental-health-making-diagnosis

www.caregiving.org/circleofcare 23 OF CARE fact sheets

06: Hospital Discharge Planning

Introduction Background: Mental Health Caregivers When a mental health crisis occurs, time and Discharge Planning seems to stand still and yet everything Knowing what is necessary to support the happens in the blink of an eye. The moments person you care for needs as they transition from the beginning of a mental health crisis from a health care facility to home is the that results in treatment in a health care key to success. But, how do you know facility to the discharge can be an extremely what support is needed? More importantly, isolating time for mental health caregivers. how do you know what programs and This is true whether the treatment was in an services are available in your community? emergency department or involved a stay in Unfortunately, many mental health caregivers a facility. report that services are either not available or hard to locate.25 Discussions with health When it seems as if the person you care care professionals should start early: we for has been sent home too early, it can be suggest starting the discussion about plans even more frustrating. In a recent study, for discharge at the time of admission. when caregivers were asked about discharge There are many terms related to what is situations, 70% report that when the care known as ‘discharge planning’ and educating recipient went to a facility in crisis they yourself is key to advocating for a successful 24 were sent home too early or quickly. transition for your care recipient. When a The time following a crisis is one of the care recipient is admitted to the hospital, or most critical times for both the caregiver spends time in the emergency department, and their care recipient. How this is handled some medical professionals may use terms can make all the difference in the transition such as continuity of care or care transitions. from hospital to home. Being fully aware Both terms refer to the time and the process of your choices as well as the challenges, between preparing to leave a hospital setting 24 National Alliance for and going home. This process should be Caregiving On Pins & opportunities, and resources is critical and Needles: Caregivers of person-centered and driven by outcomes Adults with Mental Illness. can help to mediate the challenges you may (2015) face in your role as caregiver in this situation. related to a successful transition for the 25 Ibid.

24 www.caregiving.org/circleofcare 06: Hospital Discharge Planning

person with the mental health condition of care. The elements of a successful and for you as the caregiver. Armed with discharge planning process are outlined information and awareness, you can be sure below. It is critical that you are: 1) involved; to make this process a smoother transition. 2) included in the discussions; and, 3) educated. As the caregiver, you should Your Role in Planning for Discharge expect and insist that the following occurs and Ensuring a Successful Transition between you, the person you care for, Many individuals experience challenges and the discharge planning team: after being discharged from the hospital. Research suggests that these situations • Include: You and the person you care can be avoided or minimized through for should be included as full partners proper planning.26 The discharge process in the discharge planning process. requires open communication, knowledge • Discuss: You and the person you of the health care system, and information care for should discuss five key areas related to local services and supports. Most to prevent problems at home: importantly, caregivers should be advocates for themselves and the care recipient. • describe what life at home will be like; • review medications; The Centers for Medicare & Medicaid • highlight warning signs and problems; Services (CMS) suggests considering the • explain test results; and following when preparing to leave the hospital: • make follow-up appointments.

• What’s Ahead? • Educate: You and the person you care • What services and programs are available? for should learn about the mental health • Who can help? condition, the discharge process, and • Your Care Recipient’s Health next steps throughout the hospital stay. • How can they help themselves? • Activities of daily living • Medications

• Recovery and Support • Psychiatric rehabilitation programs • Support groups • Peer counseling

• Your Health • Education and training • Getting the help and support you need

The Agency for Healthcare Research and Quality (AHRQ) developed a discharge planning overview that provides a roadmap 26 Agency for Healthcare for successful transitions and continuity Research and Quality, Guide to Family Engagement (2014).

www.caregiving.org/circleofcare 25 06: Hospital Discharge Planning

Helpful Websites Agency for Healthcare Research and Quality (AHRQ) IDEAL Discharge Checklist www.ahrq.gov/sites/default/files/wysiwyg/professionals/systems/hospital/ engagingfamilies/strategy4/Strat4_Tool_1_IDEAL_chklst_508.pdf

Family Caregiver Alliance www.caregiver.org/hospital-discharge-planning-guide-families-and-caregivers

Mental Health.Gov www.mentalhealth.gov

National Alliance for Caregiving www.caregiving.org

National Alliance for Mental Illness www.nami.org/Find-Support/NAMI-Programs

Your Discharge Planning Checklist (CMS) www.medicare.gov/pubs/pdf/11376-discharge-planning-checklist.pdf

26 www.caregiving.org/circleofcare OF CARE fact sheets

07: Health Insurance

Introduction Parity applies whether the provider or Mental health is essential to overall health facility is in or outside the health plan health and well-being, yet mental health network. And, if no in-network provider insurance benefits often do not measure is available close to home, insurers are up to coverage for other types of medical required to cover out-of-network care care. In a recent study of caregivers of at no additional out of pocket cost. adults with mental health conditions, one Health coverage for most Americans is third of the caregivers (31%) stated a subject to federal parity law. That includes need for health insurance to cover mental large employer health plans, self-insured illness on par with medical care.27 employer-based plans, and Medicaid managed care plans. Most health insurance Background purchased by individuals or small employers Three federal laws protect people from (2-50 workers) must comply with parity law, discrimination in mental health and whether sold through a health insurance addiction coverage: The Mental Health exchange or not. A few individual plans are Parity and Addiction Equity Act of 2008 exempt, but only if they were purchased (MHPAEA), The Patient Protection and before 2010 and have not changed since. Affordable Care Act of 2010 (ACA) and the Medicare has a lifetime limit of 190 days 21st Century Cures Act of 2016. These for in-patient psychiatric care: although laws require most health plans to cover outpatient services are covered at the same mental health and addiction treatment at level. Parity is not required for Tricare, retiree- the same level as other types of medical only plans, state and local government plans, care. The number of covered visits cannot or health plans for faith-based organizations. be lower, and out-of-pocket costs cannot be higher. The selection of prescription Parity Warning Signs drugs must be comparable between Mental health parity may be an issue if the 27 National Alliance for mental health and medical or surgical care. Caregiving: On Pins & care recipient’s health plan denies approval Needles: Caregivers of Standards used to approve or deny care Adults with Mental Illness. for care recommended by the provider, www.caregiving.org/ cannot be stricter for mental health. mentalhealth

www.caregiving.org/circleofcare 27 07: Health Insurance

if out of pocket costs are higher, or if it is What to Do difficult to find a mental health or addiction You and the care recipient may take the treatment provider who takes the health following steps if the health plan will not plan. The most common parity issues include: pay for the mental health or addiction care prescribed by the provider: The health plan pays for fewer outpatient visits or inpatient days for mental health or 1. Talk with the provider. Ask why the addiction care than for other types of care. recommended treatment is preferred over alternatives recommended by the health Residential or partial hospital care is not plan. covered. For example, residential care for an eating disorder is excluded, but the plan pays 2. Contact the health plan customer service for stroke care in a skilled nursing facility. line. Explain the situation and ask for a decision to cover the requested care. Higher out-of-pocket costs for mental health or addiction care. For example, the copay for 3. If not satisfied, file a written appeal. a visit with a mental health therapist is higher Formally asking the health plan for a than the copay for a pulmonologist to treat different decision is worthwhile, because asthma. many appeals are overturned in favor of the consumer. Treatment requests are denied more frequently for mental health or addiction care 4. At the same time, contact the state than for other types of medical care due to health insurance department or Medicaid medical necessity criteria. consumer complaint service. Staff at these offices can help you understand whether Prior approval is required more often for parity applies and how to file a complaint. mental health or addiction care than for They can also connect you to the person other care. or agency responsible for your care Step therapy (or fail first) requirements are recipient’s health plan. more troublesome. Step therapy means that a Visit the U.S. Department of Health and consumer must try and fail on one treatment Human Services parity complaint portal for before the prescribed care will be covered. more information and to connect to the No local mental health professionals are in the correct government agency: www.hhs.gov/ health plan network and the health plan does mental-health-and-addiction-insurance-help. not pay for out-of-network providers.

28 www.caregiving.org/circleofcare 07: Health Insurance

Helpful Websites & Numbers Centers for Medicare and Medicaid Services (CMS) Federal agency responsible for Medicare, Medicaid and health insurance exchange or federal Health Insurance Marketplace plans. • Helpline: 877-267-2323 extension 61565 • [email protected] ParityTrack A nonprofit organization that advocates for mental health and addiction parity • www.paritytrack.org Substance Abuse and Mental Health Services Administration (SAMHSA) Federal agency responsible for mental health and substance use services. • Helpline: 800-662-4357 U.S. Department of Health and Human Services (HHS) Parity Portal To find the correct state or federal agency for the type of health plan. • www.hhs.gov/mental-health-and-addiction-insurance-help U.S. Department of Labor, Employee Benefits Security Administration (EBSA) Federal agency responsible for employer sponsored and large self-insured health plans. • 866-444-3272 • www.dol.gov/agencies/ebsa/about-ebsa/ask-a-question/ask-ebsa

www.caregiving.org/circleofcare 29 OF CARE fact sheets

08: Community Services

Introduction • day or treatment programs (64%); As a caregiver, it is challenging to help the • peer support (58%); care recipient. The person you care for may • case management (49%); need help finding mental health services in • in-patient treatment (48%); and, addition to practical help such as personal • substance abuse treatment (45%). care, cooking, shopping, transportation, Often it is the caregiver who becomes the finances, and paperwork. It is often difficult advocate and has the most knowledge to find the time and energy to make it all about the care recipient’s situation, but this happen, and still attend to the other parts can come at the price of personal sacrifice of your life. Learning how to access the and lack of work-life balance. One in three available support in your community can caregivers (34%) reported barriers to talking relieve some of the pressure. with providers about their own needs for self-care. More than a third wanted, but Background: Mental Health Caregivers could not get, respite services (39%).28 and Community Services In a recent study, mental health caregivers Finding Needed Services reported dissatisfaction with the number Services for the care recipient: If you are (51%) and quality (46%) of mental health a caregiver looking for services, there are community services in their care recipient’s mental health advocacy organizations such area. The problem was most acute in rural as the National Alliance on Mental Illness areas where services were sparse and (NAMI) and Mental Health America (MHA) remote. Studies of caregivers of adults with that can help. Advocacy organizations often mental illness have found that: have staff and volunteers who also happen • One in four caregivers say they have to be caregivers. They may know the local difficulty finding services. resources and be able to help you open doors. It can be comforting to have someone 28 National Alliance for • Caregivers experienced trouble in finding Caregiving (2015) On Pins standing with you who understands the & Needles: Caregivers of or arranging the following: Adults with Mental Illness, system and has provided care.

30 www.caregiving.org/circleofcare 08: Community Services

Many caregivers rely on their family doctor or for has a diagnosis, consider researching other health care providers to find services therapies found to be effective for the and support. Health care providers, however, specific condition. When searching for may not be versed in the range and quality of a therapist, examine their credentials in specific community mental health programs providing those specific therapies. Living in available in your community. They may not a rural area does not need to be a barrier have any information about services that to a given therapy because therapists are would support caregivers and families. often available through tele-health. (A word Because of our fragmented health and social of caution: check with the care recipient’s service system, care recipients and caregivers health insurer to find out whether tele- often fall through the cracks. health is a covered benefit.)

In a recent study, mental health caregivers • Medication: Psychiatric medication may indicated the need for policy support to help be an important part of stabilization and make services available and easy to navigate. recovery. Some people with mental health Specifically, they asked for mental health conditions require continued medication coverage parity (31%) and care navigator while, for others, medication is only services (30%).29 needed at certain points or not at all. Effective prescribing practices achieve a Mental Health Services and Supports balance between managing symptoms and Mild to moderate symptoms of mental minimizing side effects. Be patient as it illness may be treated by one main provider, can take weeks to determine whether the although more serious conditions often medication is working. require a multidisciplinary approach. If • Service brokering and system navigation: your care recipient lives in an area short Obtaining the services and support the on mental health professionals, routine care recipient needs can be a daunting task. treatment can be delivered through a local If the person you care for goes to a mental health clinic, with additional expert care as health agency or health clinic, a service needed through tele-health or psychiatric broker (which can be a case manager, consultation. Mental health care may involve care coordinator, or social worker) may be the following: assigned to arrange care, health coverage, • Assessment and diagnosis: Effective mental income support, and other needs. If health care requires ongoing assessment, you feel the care recipient needs help care planning, and diagnosis as the communicating their needs to the service care recipient’s needs change and the broker, ask to be included in a visit. If the underlying condition(s) become clear. person you care for is willing to involve you, he/she may need to complete a ‘consent to • Psychotherapy: A range of individual, group release information’ form. and family therapies are effective to help people with mental health conditions change their patterns of thinking, feeling, and behavior. Once the person you care 29 Ibid.

www.caregiving.org/circleofcare 31 08: Community Services

• Emotional support: The road to recovery • Supported employment: Most people with can be hard. People with mental health mental health conditions want to work, and conditions often need someone they would work, given effective employment can turn to as a sounding board or and vocational support.32 Studies show for encouragement. Mental health that work promotes recovery33 by offering professionals should provide emotional financial independence, a sense of purpose, support as needed. Peer support specialists social interaction, and hope.34 The two are particularly helpful because they have most effective models of supported personal experience with the recovery employment for people with mental process. They know how hard it can be, health conditions are Individual Placement but they also know that it gets better. Peer and Support (IPS), and the Psychosocial support specialists are often employed by Clubhouse. Community mental health mental health agencies or independent centers may offer these programs, although organizations. Clubhouses are often independent agencies. • Life skills and socialization: Common symptoms of mental illness include • Crisis intervention: Crisis services confusion, self-doubt, loneliness, and intervene at the breaking point. Crisis anger. Training in social skills and stress counselors stabilize, help prevent further reduction helps a person with a mental crises, refer to professional help, and 30 Cooper E, Knott L, Schaak G, Sloane L, health condition build good relationships. follow-up to ensure long-term recovery. Zovistoski A (2015). Priced Out in 2014: The Instruction in practical skills like budgeting A crisis response system can include Housing Crisis for People with Disabilities. Technical and cooking can improve quality of life. 24/7 telephone counseling, mobile crisis Assistance Collaborative. http://www.tacinc.org/ Mental health agencies and peer support response teams, walk-in clinics, short-term knowledge-resources/ priced-out-findings/ centers offer opportunities to help the care crisis stabilization units, respite services,

31 Hunt et al (2015). On recipient meet others, learn healthy social and transportation. If the person you care Pins & Needles: Caregivers of Adults with Mental interaction skills, and reduce isolation. for is in crisis and an immediate threat to Illness. p. 20. him/herself or to others, call 911 and ask 32 McQuilken M, Zahniser • Housing support: Decent, safe, affordable JH, Novak J, Starks RD, for a Crisis Intervention Team (CIT), or get Olmos A, Bond GR (2003). housing lays a foundation for recovery, yet The Work Project Survey: to the nearest hospital emergency room as Consumer perspectives on without financial assistance, independent work. Journal of Vocational soon as possible. If your care recipient is Rehabilitation18: pp. housing is out of reach for many people on 59-68. suicidal, The National Suicide Prevention 30 33 a fixed income. A recent study of mental Burns T, Catty J, White Lifeline has trained counselors who can S, et al (2009). “The health caregivers found that 45% of the impact of supported speak with you or your care recipient 24/7 employment and working 31 on clinical and social care recipients lived with the caregiver. functioning: Results of and can be reached at 1-800-273-8255. an international study of Although there are advantages to living as Individual Placement and Support.” Schizophrenia an extended family, the situation can also • Hospital and residential treatment: In- Bulletin 35: pp. 949-958. be stressful. Mental health agencies often patient care may be necessary if the person 34 Douglas D, Diehl S, and Honberg R (2014). employ housing specialists to help with you care for is in psychiatric crisis, is at The Road to Recovery: Employment and Mental subsidized housing. In some communities, risk of harm to self or others, or requires Illness. National Alliance on Mental Illness. p. the waiting lists are long, but signing up is complex intervention. 3 https://www.nami. org/About-NAMI/ still worthwhile. Publications-Reports/ Public-Policy-Reports/ RoadtoRecovery.pdf

32 www.caregiving.org/circleofcare 08: Community Services

• Most psychiatric hospital stays are • Eldercare Locator provides assistance to brief, no more than a week or two, with families who are seeking programs and specific treatment goals. In-patient services in their local communities. www. mental health care may be received eldercare.gov/Eldercare.NET/Public/Index. in the psychiatric unit of a general aspx hospital, a privately operated psychiatric hospital, or a state psychiatric facility. It • The National Institute of Mental Health is best if the care recipient enters into (NIMH) offers information on topics by in-patient care of their own accord, condition, population, and prevention. but when the care recipient or others www.nimh.nih.gov/news/science-news/2011/ are at immediate risk, involuntary support-program-can-help-caregivers-cope- commitment may be necessary. Today, with-relatives-mental-illness.shtml many hospitals ask patients to name a • The Substance Abuse and Mental Health caregiver to be involved in discharge Services Administration (SAMHSA), a planning. Designated caregivers receive federal agency, offers a confidential information to support aftercare, which nationwide mental health and substance can improve outcomes. abuse services locator. Locator services • Residential mental health treatment are available either online or by telephone: is a step-down, or hospital diversion, findtreatment.samhsa.gov/ strategy usually consisting of two to • The National Alliance on Mental Illness eight weeks of intensive treatment in a (NAMI) offers various education and home-like setting. Goals include reducing support programs for people with mental symptoms, learning healthy coping illness and their families. To learn more mechanisms and living skills, rebuilding about specific programs, visit www.nami. relationships, and preventing relapse. (A org/programs. To find a NAMI organization note of caution: residential treatment is in your area, visit www.nami.org/local. expensive, and health insurance coverage can be difficult to obtain). • Mental Health America (MHA) offers information and programs including Helpful Resources the Peer Support Program housed There are various online tools to access within the Peer Support Center. www. services through national organizations. One mentalhealthamerica.net/center-peer-support resource is your local municipality. Many • National Family Caregiver Support Program people don’t think of the public sector as (NFCSP) was established in 2000 to being an access point for mental illness but in provide support to caregivers and since fact there are many programs that may assist that time has expanded to include a you. Examine the information and referral variety of caregiving situations including systems that can provide you with phone mental health. Through the NFCSP, money numbers and other information on available is distributed to states and territories in services. The following includes examples of the form of grants to provide support to services and assistance that may be of interest: caregivers. www.acl.gov/programs/support-

www.caregiving.org/circleofcare 33 08: Community Services

caregivers/national-family-caregiver-support- Support (LTSS). Through person-centered program counseling (PCC), individuals are assisted through the process and learn about the • Lifespan Respite Program is a community- resources available to them. www.n4a.org/ based system of care for family caregivers adrcs providing care to family members of all ages. www.acl.gov/programs/support- • The National Association of Area Agencies caregivers/lifespan-respite-care-program on Aging provides a wealth of information for caregivers related to housing, home and • Aging and Disability Resource Centers are community-based services, transportation, considered ‘single points of entry,’ ‘no elder law, and much more. www.n4a.org/ wrong door,’ or ‘access points’ to resources agingservices related to Long-Term Services and

Helpful Websites AARP–Caregiving www.aarp.org/home-family/caregiving/ Caregiver Action Network caregiveraction.org Family Caregiver Alliance www.caregiver.org Mental Health.Gov www.mentalhealth.gov National Alliance for Caregiving www.caregiving.org National Alliance on Mental Illness www.nami.org/Find-Support/NAMI-Programs U.S. Department of Health and Human Services (HHS) www.mentalhealth.gov/talk/community-conversation/services/index.html

34 www.caregiving.org/circleofcare OF CARE fact sheets

09: Dealing with the Criminal Justice System

Introduction Background If the care recipient experiences a crisis, it Unfortunately, criminal justice intervention has may be necessary to call law enforcement for become a primary strategy to patch our nation’s your safety or that of your family member. fragmented mental health system. Many people Depending on the circumstances, you may with mental health conditions are arrested for be relieved, thinking that incarceration would, minor crimes which are linked to their illness or at least, provide food, shelter, and access to addiction rather than any intent to harm. Two mental health care. million Americans with mental health conditions are in jail and prison each year.35 Inmates with The reality is quite different. Without mental illness tend to serve longer sentences specialized training, busy court staff may not than others convicted of similar crimes.36 Once know how to assist the care recipient. Jails are released, they are at higher risk of re-arrest and noisy, crowded, and dangerous: no place for 37 35 Subramanian R., Delaney more time behind bars. R. Roberts S., Fishman someone who is easily traumatized. Probation N., McGarry P. (2015). “Incarceration’s Front or parole may set expectations that cannot In a national study of mental health Door: The Misuse of Jails in America” Vera Institute be met. People with mental illness can easily caregivers, one third (32%) of the of Justice http://www.vera. org/sites/default/files/ get caught in a cycle of arrest, court, and respondents reported that their care resources/downloads/ incarcerations-front-door- incarceration/punishment rather than the recipient had been arrested. Arrest rates report.pdf; Jail Inmates at Midyear treatment that could improve their lives. were higher for males (45%), individuals 2013” US Department of Justice, Bureau of Justice with co-occurring addiction (59%), and Statistics NCJ 245350. The criminal justice system is not equipped to Accessed April 9, 2015 those with schizophrenia or bipolar disorder at: http://www.bjs.gov/ meet the needs of people with mental illness. content/pub/pdf/jim13st. (43%). Mental health caregivers whose care pdf. Experts on this issue agree that the current 36 James, DJ; Glaze, LE recipient had been arrested were more often (2006) Mental Health approach fails to improve public safety, Problems of Prison and Jail concerned about victimization (70%) and Inmates, Bureau of Justice stresses already strained local resources, and Statistics https://www. self-harm (74%) than the overall sample. bjs.gov/content/pub/pdf/ harms people with mental health conditions mhppji.pdf 37 Mayor’s Task Force on and their caregivers. To address the problem, The facts are grim, but you are not helpless. Behavioral Health and the Criminal Justice System diversion models have been developed and There are steps you, as a caregiver, can (2014). “Action Plan 2014.” http://www1.nyc.gov/ are spreading across the country, however, take to get your care recipient out of this assets/criminaljustice/ downloads/pdf/annual- progress is slow and uneven. environment and into care. report-complete.pdf.

www.caregiving.org/circleofcare 35 09: Dealing with the Criminal Justice System

The Criminal Justice Process: have time for a detailed conversation. Tips to Help Your Care Recipient Learn more: www.nami.org/find-support/ Although criminal justice systems vary by family-members-and-caregivers/calling-911- state, county, and municipality, there are and-talking-with-police similarities. At each point in the criminal Tip: Ask for a Crisis Intervention Team (CIT) justice process, you can take steps to officer. Many communities have these improve your care recipient’s situation. It specialized officers who are trained to is important to know that there are many handle mental health crises. Learn more: steps after an initial encounter with law www.nami.org/cit enforcement: at every stage, there may be Booking and pretrial detention: If arrested, opportunities to help improve your care the person you care for could be taken into recipient’s situation or reduce their chances custody while decisions are made about of long-term incarceration. criminal charges and whether he/she will be Crisis plan: The best way to deal with the jailed or released on bond. justice system is to avoid it altogether. Tip: If your care recipient is in treatment, Planning is key to prevention. A Psychiatric call the detention facility and give contact Advanced Directive (PAD), written crisis plan, information for their case manager or or a Wellness Recovery Action Plan (WRAP) primary mental health professional. are good tools to help things go better during Defense attorney: The court can play a valuable a mental health crisis. Developing a crisis plan role in getting mental health care for the care will help you and your care recipient discuss recipient, however, obtaining legal counsel is what to do in a crisis and identify the best a critical first step. When it comes to a lawyer, support to call on. With a plan, you may be cost does not necessarily mean quality. A public able to get through a mental health crisis defender may often be the best choice unless without calling the police. Having a crisis plan the care recipient already has a criminal defense can also help you decide what to say if you do attorney. Be aware that public defenders need to call the police. Learn more: www.nrc- have heavy caseloads, so your job is to share pad.org/ and www.mentalhealthrecovery.com information in a polite and helpful manner. Law Enforcement: When safety is at stake, Tip: You can improve the outcome by law enforcement officers may be called. informing the defense attorney about the Although arrest is one possibility, officers care recipient, what you hope for, and may divert the person into mental health care providers who can help. If the lawyer is not rather than making an arrest. available, leave a detailed voice message Tip: When you call law enforcement, and follow up in writing. Remember that mention that your care recipient has the attorney does not work for you, so they a mental illness and provide as much may not be able to share information with information as possible. Note whether you. But you can share information with they are, or have been, in treatment. Tell them that may strengthen the case. the dispatcher about a crisis plan if there Tip: Encourage the care recipient to be is one. Share this information with the honest with the lawyer even if details are dispatcher, because the officer may not embarrassing or shocking. The defense

36 www.caregiving.org/circleofcare 09: Dealing with the Criminal Justice System

attorney needs to know any complications mental health or substance use conditions. in order to build a solid case. These courts offer a choice to participate Tip: Encourage your care recipient to sign in community treatment under court a release allowing their attorney to discuss supervision or serve jail time. The court their case with you. has staff who work with service providers to develop a plan. The plan often Criminal charges: A criminal charge is a formal includes treatment, housing, supported claim by a government official that a person employment, peer support, or other has broken the law. A misdemeanor charge services. Goals of the court are to promote for a less serious crime carries a maximum recovery, while holding the defendant sentence of one year or less. All other crimes accountable for breaking the law. are charged as felonies. Most crimes linked to Tip: By showing up in court you can untreated mental illness are misdemeanors, boost the care recipient’s morale. although it is common to have felony You also show that the defendant charges for resisting arrest, assault, or drug has people to help them keep things related crimes. A felony conviction severely stable, which may influence the judge’s limits options for housing and other public sentence. benefits after release from jail or prison. Many charges, however, are dismissed, or Psychological evaluation: The U.S. downgraded, before the individual goes to Constitution bans courts from trying trial. individuals or otherwise resolving cases of persons who may not be competent to The courts: If your care recipient is charged with understand the nature of the charges that a crime, they will go before a court. If the crime have been filed against them or to participate was serious or complex, the care recipient meaningfully in their own defense. At any may have a number of hearings. The process point, the judge can order a psychological can take months. If they plead ‘not guilty’ and evaluation to decide whether a defendant is choose a jury trial, the process can take longer. competent to stand trial. These evaluations If your family member chooses a plea bargain, it sometimes take place in hospitals, in jails, and means they plead guilty or ‘no contest’ and may for less serious crimes, in the community. receive a more lenient sentence. During a forensic or psychological evaluation, • Arraignment: Within a few days of arrest, the case is on hold. At that point, the defendant the care recipient must appear before the may wait in jail for weeks or months. Court to hear charges and their legal rights, For serious crimes, the defense may request enter a plea, and receive legal counsel, an evaluation to determine whether a if needed. If the plea is ‘not guilty’ a person’s mental health status at the time preliminary hearing date will be set. If the of the crime was so severe that an insanity charge carries jail time, the care recipient defense, or another defense raising mental may be required to stay in jail until the illness as a mitigating or justifying factor, court date unless bail has been set. may be used. ‘Competency’ and ‘insanity’ • Recovery court: Many jurisdictions have are different legal issues. ‘Competency’ specialty courts for defendants with pertains to a person’s capacity to proceed to

www.caregiving.org/circleofcare 37 09: Dealing with the Criminal Justice System

trial. ‘Insanity’ addresses whether a person’s Jails are secure facilities operated by a city or psychiatric condition at the time of the crime county for pre-trial detention, incarceration for can be used as a defense. misdemeanors, or temporary placement prior to a prison term. Jails are crowded and noisy with Sentences are a legal order for punishment. people coming and going at all hours. Larger jails The purpose is to hold the person accountable may have a mental health specialist and limited for the crime and to discourage further capacity to provide psychiatric medications. criminal activity. Frequently, sentences Some large jails have medical units with mental include fines, probation, mental health or health services and protection from the general substance abuse treatment, community inmate population. Small rural jails may not be service, or incarceration. prepared to offer mental health care at all or Tip: Work with the defense attorney to may contract with an independent correctional advocate for mental health treatment as health company. Release from jail happens part of the sentence. Share information on suddenly with little or no time for planning. treatment, training, or self-help groups the care recipient has attended. Prisons are secure state or federal facilities Tip: If appropriate, offer to vouch for the that house individuals sentenced to one year care recipient’s character. Provide contact or more for a felony conviction. The time information for other character witnesses. served depends on the crime, the person’s criminal record, and their behavior while Probation is a suspended jail sentence locked up. Prisons are required to assess that allows the defendant to serve time in inmates for mental health and addiction the community under a court order and and to offer basic treatment such as supervision by a probation officer. Court counseling, self-help groups, and a limited requirements may include participation in list of psychiatric medications. Special needs treatment, staying clean and sober, community prisons offer more intensive treatment. service, meeting with the probation officer, Tip: Regular letters, phone calls, and visits or attending court hearings. Probation can will boost the care recipient’s spirits. Also, be revoked if the conditions are not met. The prison staff may treat them with more judge could order the probationer to jail or respect if the family is paying attention. add requirements to the probation. Tip: When communicating with prison staff, Tip: Work with the defense attorney to be polite. Make any necessary requests in advocate for treatment as a condition of a respectful manner and observe prison probation. Provide contact information for procedures. service providers. Give specific names, phone Tip: You can request a check-up for your numbers, and emails to make it as easy as relative if you are concerned at any point. possible to reach these providers. If possible, Tip: Encourage the care recipient to take offer options for housing and employment. part in education training programs while in Incarceration may require the care recipient to prison. These will increase post-release job spend time in jail or prison. There are significant opportunities and will count as ‘good time’ differences between the two, especially when toward a reduced sentence. it comes to someone with mental illness.

38 www.caregiving.org/circleofcare 09: Dealing with the Criminal Justice System

Solitary confinement, or segregation, is used A prison release date is known in advance. to manage difficult or dangerous prisoners. Prison personnel should help the care Inmates with mental illness are more likely recipient with transitional housing and other to be segregated in isolation cells, often for benefits and services, but your assistance months or years, with little or no treatment.38 can further ensure that needed supports are Solitary confinement is hard on anyone, but in place. Re-entry after a prison sentence is people with mental illness suffer terribly, difficult because certain crimes, such as felony often to the point of self-harm or suicide. drug crimes, impact eligibility for essential Tip: If your relative is in solitary confinement, services such as housing, food, income, and do whatever you can to get them out. For employment. Learn more: www.nami.org/Find- expert help, contact your state’s: Support/Living-with-a-Mental-Health-Condition/ • American Civil Liberties Union (ACLU) Reentry-After-a-Period-of-Incarceration www.aclu.org/about/affiliates • Protection and Advocacy Agency: Conclusion www.ndrn.org/about/paacap-network.html The criminal justice system can be traumatic and dangerous, but your support can make Reentry: Jail release can happen within hours a difference. Research shows that people of the order. You can prepare by gathering involved in the criminal justice system are a set of clothes, toiletries, birth certificate, more likely to succeed in the community and driver’s license or state photo ID, social less likely to re-offend, if they have at least security card, and a pre-paid mobile phone one person who stands by them. You can with numbers for family, friends, and service make that difference by staying connected providers. It is also wise to gather information to the care recipient, and by offering to help to help the care recipient apply for income law enforcement, legal, and mental health support, health benefits, food, housing, personnel obtain information and assistance treatment, transportation, education, and to strengthen the case. other basic necessities.

Helpful Websites Council of State Governments, The Stepping Up Initiative to Reduce the Number of People with Mental Illness in County Jails stepuptogether.org GAINS Center for Behavioral Health and Justice Transformation www.samhsa.gov/gains-center Mental Health America: Benefits for Prisoners with Mental Illness

www.mentalhealthamerica.net/issues/criminal-justice 38 Metzner JL; Fellner J; Solitary Confinement and Mental Illness in National Alliance on Mental Illness (NAMI), Handling the Arrest of a Family Member U.S. Prisons: A Challenge for Medical Ethics. www.nami.org/Find-Support/Family-Members-and-Caregivers/Handling-the-Arrest-of-a-Family-Member Journal of the American Academy of Psychiatry and the Law Online Mar The Bazelon Center for Mental Health Law 2010, 38 (1) 104-108. Accessed 8/29/2017: www.bazelon.org/our-work/criminal-justice-2 http://jaapl.org/ content/38/1/104

www.caregiving.org/circleofcare 39 OF CARE fact sheets

10: Planning for the Future

Introduction result in abrupt and traumatic transitions, Caring for someone with a mental health sudden loss of critical support, and legal condition can be a lifelong journey. There and financial difficulties. Planning cannot is a growing population of older caregivers guarantee the future, but it can relieve providing support to people with mental stress and enhance the likelihood of positive illness, most often parents who care for adult outcomes for people with mental illness. sons or daughters over extended periods. As these families age they face unique needs What Is Future Planning? and challenges in planning for a future time Future planning involves identifying hopes when the primary caregiver passes away or and concerns about the future of the care can no longer continue providing care due to recipient and making arrangements to their own age-related needs. achieve the desired outcomes. It is best to think of it as an ongoing process: If you are in this situation, you are not alone. About a quarter of caregivers in • Planning should be person-centered. a national study of caregivers of adults Plans should be primarily driven by the with mental health conditions were 65 goals and desires of the person you and older.39 Among aging parents of adult care for, keeping in mind that people children, most said their son or daughter was may outlive their parents by decades. financially dependent on family and friends Although transitions are challenging, (64%). Less than a third (32%), however, this period of life can be a time of new reported having future plans in place. opportunities and growth. It is a time to Only 35% said their care recipient could envision what the ideal future will look rely on other friends and family to help. like and begin putting support in place.

Uncertainty about the future is a constant • Planning should involve other family, source of stress for older caregivers, as friends, and circles of support 39 National Alliance for In particular, it is important to include Caregiving (February, well as the person with mental illness and 2016). On Pins & Needles: Caregivers of Adults with other family members. Lack of planning can siblings in planning if possible. Studies Mental Illness.

40 www.caregiving.org/circleofcare 10: Planning for the Future

have found that siblings are most likely Assistance Program (SNAP), and low- to take over as primary caregivers when income housing assistance programs. parents are no longer able to provide care.40 Unfortunately, although many An older caregiver may also be eligible parents report that they hope this will for benefits from the aging service happen, they seldom have conversations system. In particular, a program called with siblings of the care recipient in the National Family Caregiver Support advance to ensure they are willing, Program, administered through local area and prepared, to assume this role. agencies on aging, was recently amended to provide support for older caregivers • Planning is not a one-time event. (age 55 and older) caring for adult relatives Planning is not easy, it cannot be with disabilities, including mental illness. completed overnight, and there is no A common challenge that families of cookie-cutter approach. Even the best people with mental illness face is how plans need to be revisited on an ongoing to leave financial assets to their family basis as circumstances change, but it without jeopardizing their eligibility is important to take steps forward. for current or future means-tested government benefits — such as SSI What Planning Is Needed? and Medicaid. Fortunately, there are Planning will vary based on the unique very specific legal and financial tools circumstances of each family. In general, that can help you avoid jeopardizing major issues you should think about include: the care recipient’s eligibility for these 1) Benefits and Financial Planning programs while ensuring that money is Families frequently face the challenge of available for their ongoing needs. Below planning for the financial security of a are some common tools that families person with mental illness. This typically use. It is important to note, however, involves researching publicly available that most attorneys and financial benefits. There is a range of benefits that planners are not experts in this area. the care recipient may be eligible for but It is critical to seek out knowledgeable may not be receiving. Moreover, if their professionals who understand disability household composition or financial status benefits and have experience in using changes in the future, they may become these tools to ensure they are set up eligible for benefits — particularly benefits correctly. Tools available include: based on low-income and assets, referred • Special needs trusts to as ‘means-tested benefits.’ Many A special needs trust is a specific type benefits exist outside of the mental health of trust designed to support people system — for example, Supplemental with disabilities, including mental Security Income (SSI), Social Security illness. There are certain limits on Disability Insurance (SSDI), Medicaid, 40 Hatfield, A.B. & purchases that can be made with trust Lefley, H. (2005). Future Medicare and Medicare Savings Programs involvement of siblings in funds. In general, they can be used to the lives of persons with (that assist with Medicare cost-sharing mental illness. Community cover a range of supplemental goods Mental Health Journal, and deductibles), Supplemental Nutrition 41(3): pp. 327-338.

www.caregiving.org/circleofcare 41 10: Planning for the Future

and services not covered by SSI and advantage over special needs trusts is Medicaid. For example, special needs that money in the ABLE account works trust funds may cover supplemental as a savings vehicle and grows tax therapies, assistive technology, free. Not all people with mental illness, transportation, recreational activities, however, will qualify. Individuals must and other support that enhance have a significant disability with an onset quality-of-life. Family members (or that occurred before the age of 26. other third parties) can place money into a special needs trust via gifts, 2) Residential Planning inheritance, or through the proceeds Among parents of adults with mental from life insurance. Since finances illness, most lived within 20 minutes of in the trust do not count as assets, their son or daughter (74%). Almost half individuals maintain their eligibility for of caregivers in a national study said means-tested government benefits. that the person they cared for lived in their household (45%). More than half • Pooled trusts of the caregivers whose care recipient Pooled trusts operate in a similar manner was financially dependent on family to special needs trusts. The difference and friends, reported that the care is that, instead of being established recipient lived in their household (52%). by individuals and families, they are established by non-profit organizations As a family caregiver, it is important to for the purposes of investment. plan where the care recipient will live in Although the funds placed in a pooled the future. Depending on circumstances, trust are invested collectively, each you may face questions such as: beneficiary's account remains their own. • Where does the care recipient Depending on the trust, beneficiaries desire to live in the future? If they might also receive other services and move, will it impact services and support from the non-profit agency. support they may be receiving?

• ABLE accounts • If the care recipient lives in the family Achieving a Better Life Experience home, can that continue? What formal (ABLE) accounts are special savings and informal support will need to be accounts that allow people with put in place to make this happen? disabilities to save for disability-related expenses. As with special needs trusts, • Will the care recipient reside with individuals and family members can another family member, such as make contributions to the account a sibling? Have there been any within certain limits. Accounts also allow conversations with that person? Is the for a range of disability-related expenses care recipient willing and prepared without jeopardizing access to means- for the transition ahead of time? tested government benefits. ABLE • Will the care recipient live independently accounts are modeled after Section 529 in an apartment, home, or in a college savings plans. Therefore, one

42 www.caregiving.org/circleofcare 10: Planning for the Future

supervised group setting? Has the care powers of attorney, trusteeship, or recipient or caregiver applied for, or guardianship. It is important to examine been placed on, a waiting list for low- this support and identify individuals income housing support or residential who will assume these roles in the support from the mental health system? future in the event that a caregiver can no longer continue. In addition, legal 3) Support Networks documents should be re-examined People with mental illness and family and modified to identify successors. caregivers who have provided care for many years have often cobbled together • Instrumental supports networks of support, most often informal Family caregivers frequently provide networks due to inadequacies in the significant day-to-day support, service system. Planning can explore such as grocery shopping, cooking, these circles of support and invite housekeeping, laundry, recreation, others to play key roles in the future socialization, and transportation. It to maintain and strengthen them. is important to identify all the roles you are playing and identify how to Key areas of support that may continue these roles through other need to be explored include: formal and informal support networks. • Care coordination More than eight in ten caregivers say Taking the First Step they actively manage the health care Some families face significant barriers details of their care recipient, according to planning.41 Some of these include: to a national study of mental health • Emotional barriers caregivers. They act as default care It is difficult for most people to think coordinators – handling finances, about their own mortality, but for the paperwork, forms, bills, payments, health caregivers who have spent much of insurance, medication management, their lives supporting someone with appointments, and crisis care. They mental illness, it is incredibly emotional often hold institutional memory about to think about a time when they will medication, treatment, and medical no longer be there. Who will provide history — what has worked in the past their care? It is also deeply emotional and what has not. It is important to for people with mental illness who may document this history, identify who be providing day-to-day and social will assume greater responsibility support to their parents as they age. in the future, and pass this history on to ensure continuity of care. • Service system barriers The service system is inadequate and • Decision-making supports sometimes makes planning difficult. Depending on your personal 41 Hatfield, A.B., & Lefley, In a study of mental health caregivers, H.P. (2000). Helping circumstances, you may already have elderly caregivers plan respondents reported significant unmet for the future care of a some form of decision-making supports relative with mental illness. service needs including needs for mental Psychiatric Rehabilitation in place, such as representative payee, Journal, 24: pp. 103-107.

www.caregiving.org/circleofcare 43 10: Planning for the Future

health professionals, peer support, medical workshops on future planning for families providers, case management, and day of people with mental illness. They may programs/treatment. Housing support also be of assistance in local referrals to is often limited and difficult to secure. legal and financial planning experts.

• Complexity of legal/financial planning Another step that has been helpful for Legal and financial planning can be some families is the development of what extremely complex and can require the is called a ‘Letter of Intent.’ A letter of intent assistance of knowledgeable professionals. is not a legal document. It doesn’t cost The financial cost involved in some money or require going to legal and financial planning options can also pose barriers. professionals. It is a person-centered In the words of one parent, however: planning tool intended to start a discussion. “If I don’t do it, no one else is going to.” It helps families document their family history, begin discussions within the family Connecting with other families in similar and circles of support, envision dreams for situations can be extremely helpful in the future, and begin identifying goals to 42 overcoming some of these barriers. ensure support is in place. The first step is Local chapters of the National Alliance on the hardest: starting with a letter of intent Mental Illness (NAMI) and other disability can help some families begin the process. advocacy organizations occasionally hold

Helpful Websites BenefitsCheckUp A free resource that can help individuals identify benefits they may be eligible for in their local community and nationally. Available at: www.benefitscheckup.org Eldercare Locator Find your local area agency on aging and supports and services available for older individuals, including family caregiver support: www.eldercare.gov Legal and Financial Planning Resources Special Needs Alliance: www.specialneedsalliance.org National Academy of Elder Law Attorneys: www.naela.org ABLE National Resource Center: www.ablenrc.org National Alliance on Mental Illness (NAMI) Find a local chapter: www.nami.org/local The Arc’s Center for Future Planning A website designed to assist families of people with intellectual and developmental disabilities 42 Heller, T. & Caldwell, J. (2006). Supporting with future planning. However, it includes tools (including an interactive, online letter of intent adults with developmental disabilities and aging caregivers in future tool) that may also be of assistance to families who care for someone with mental illness. planning. Intellectual and Developmental Disabilities, Available at: futureplanning.thearc.org 44: pp. 189-202.

44 www.caregiving.org/circleofcare OF CARE fact sheets

11: Confidentiality and Family Involvement

Introduction Tips for Family Involvement As a family caregiver, you can play an As with so many things, planning is essential. important role in supporting mental Work with the care recipient to plan how health treatment, yet you may find that the communication should flow. Build a communication with mental health working relationship with mental health professionals is limited by confidentiality providers and learn how the law limits, or policies. Although the goal of health privacy allows, the sharing of treatment information. laws is to protect the rights of the person in care, a narrow interpretation of these Help the person with a mental health laws can keep you from giving or getting condition designate a caregiver to be involved information to help the care recipient. in treatment. The first step is to talk with the care recipient about the value of your Federal and state health privacy laws allow support in the treatment process. This mental health service providers to share may be difficult if the symptoms of their information with families or other informal mental illness include fear or anger. You can, caregivers, based on defined standards and however, prepare by finding a time when professional judgement.43 Nonetheless, things are relatively calm. Another good 43 HIPAA Privacy Rule and it is common for family caregivers to feel time for this discussion is after a crisis has Sharing Information Related to Mental Health. U.S. excluded from the mental health treatment been resolved, while the desire to have Department of Health and Human Services (HHS) process. In a study of caregivers of adults a better outcome is still fresh. Keep the Office of Civil Rights. Accessed May 20, 2017: with mental illness, more than half (54%) conversation simple and friendly. It may https://www.hhs.gov/ hipaa/for-professionals/ of the respondents had been told that take several conversations to help the care special-topics/mental- health/ their relative’s mental health professional recipient adjust to the idea of you or others 44 Hunt, GG; Greene, R; could not talk with them.44 In spite of being involved in their treatment. Above all, Whiting, CG (2016) On Pins & Needles: Caregivers the challenges, there are steps you can do not try to have the conversation while of Adults with Mental Illness. National Alliance take to open the lines of communication the care recipient is experiencing intense for Caregiving. Pp. 26-27. Accessed May 20, 2017: http://www.caregiving. with treatment providers while respecting symptoms or building toward a crisis. org/wp-content/ uploads/2016/02/ the rights of the care recipient. NAC_Mental_Illness_ Study_2016_FINAL_WEB. pdf

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Discussion Questions How to build a working relationship with the mental health care provider or treatment • Who will be the designated caregiver? team? Talk with the care recipient about Help the care recipient choose someone arranging an appointment that includes they trust to be the main contact with the care recipient, the provider, and the mental health professionals. If that designated caregiver. The purpose of the person is not you, find out whether meeting is to establish contact, build trust, the chosen person can take on the lay out goals, and agree on procedures, responsibility and follow through such as, what should be communicated, by as a reliable point of contact. whom, how often, and in what situations. • What support would be helpful from caregivers? Help the care recipient Health Privacy Laws think about how a caregiver could The Health Insurance Portability and help or is already helping. Examples: Accountability Act of 1996 (HIPAA) is a transportation to appointments, help federal law governing health insurance picking up prescriptions, medication and providers. Under HIPAA, a healthcare reminders, or assistance with paperwork. provider may share relevant information with a family member or other caregiver if the • What information can be shared? person in care: What type of information will the mental health professional be permitted to • gives permission to the provider, to share with the designated caregiver? the extent allowed by the release; Examples: appointment times, diagnosis, • is present and does not object to medication instructions, admission to a sharing the information; or, hospital, or hospital discharge date. • is not present and, in the provider’s • What cannot be shared? The care recipient professional judgment, sharing may be relieved to know that their private is in client’s best interest. conversations with providers will not be shared. Example: the provider’s notes Providers can only share what is on what was discussed during therapy. necessary or directly related to the caregiver’s involvement in care. Examples • Whether to complete a ‘consent to release include: appointment times, medication information’ form? An online version instructions, or crisis arrangements. may be available from the agency or The care recipient’s direct permission is mental health provider’s website. Once required to share psychotherapy notes, the form is completed and signed, make except in cases of abuse or ‘duty to warn’ copies for them and for you. Mail or (a threat of harm to self or others). deliver the original to the provider.

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Can family members or friends give provider must not share protected health information to the provider? information with the caregiver if the person Yes. Family members or other supporters does not grant them the permission to do so. have the right to communicate any information they believe would be relevant If the provider decides the person for treatment. Everyone is busy, so it does not have the capacity to make is helpful to prepare what you want to decisions, information may be shared share so that you can efficiently convey with family caregivers, but only if the the information. The provider can choose provider believes it is in the person’s best not to explain how, or if, the information interest. A court order is not required. will be used, or even acknowledge What about substance use treatment? that the person is in treatment. Federal confidentiality law concerning Are providers required to get a signed release alcohol and drug treatment is more before sharing relevant private health stringent than HIPAA. Known as ‘Section information with caregivers? 42 C.F.R. Part 2’ the law requires a provider No, they are not required. Under HIPAA, to have specific written permission from however, providers have the option to: the person in care before disclosing substance use treatment information.46 • ask the person’s permission to share relevant information; If the care recipient has a substance use condition, in addition to a mental health • tell the person that they intend condition, this may complicate confidentiality to discuss information and give because a provider agency may develop a them a chance to object; or, general health information privacy policy that uses the stricter substance use treatment • infer from the circumstances that 45 The age at which minors privacy law for care recipients. If the stricter may consent to mental the person does not object. privacy policy interferes with mental health health care varies by state. 46 For more information What if the person in care does not want treatment in a way that seems contrary to on substance use treatment confidentiality family or other caregivers involved? HIPAA, it may be helpful to ask the clinic see the Frequently Asked Questions (FAQ) offered Mental health treatment is sensitive and director to consider a more open policy. by the Substance Abuse and Mental Health private. It is not unusual to feel vulnerable Services Administration Do states have laws on confidentiality in (SAMHSA): https://www. when experiencing depression, anxiety, samhsa.gov/about-us/ mental health care? who-we-are/laws/ or psychosis. As hurtful as it seems, some confidentiality-regulations- Every state has laws governing the faqs people with mental illness may not trust their 47 confidentiality of mental health Jost, TS; (2006) Constraints on Sharing families. It is also important to remember that Mental Health and information. Some only apply to specific Substance-Use Treatment not all families are supportive or involved, Information Imposed by circumstances such as state psychiatric Federal and State Medical and others may behave in ways that make the Records Privacy Laws. hospitals, while others apply to all mental Institute of Medicine (US) person’s challenges even harder to overcome. Committee on Crossing the health care. When there is a difference Quality Chasm: Adaptation to Mental Health and If the person in care is of age to make between state and federal confidentiality Addictive Disorders. 47 Washington (DC): National treatment decisions45 and the provider laws, the stricter standard applies. Academies Press (US). Accessed May 20, 2017: believes he/she has sound judgement, the https://www.ncbi.nlm.nih. gov/books/NBK19829/#a 2000e8e1ddd00269

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Planning Tools Psychiatric Advance Directive (PAD): A You can help the care recipient use legal document written by the person the following tools to describe their with a mental health condition when preferences about services, and plan how he/she is well and able to make sound they would like caregivers to be involved. decisions. A PAD describes treatment preferences and can designate a health Wellness Recovery Action Plan (WRAP): care proxy to make treatment decisions An evidence-based process to help the should the person be unable to give care recipient recover, stay well, and lead informed consent due to symptoms of a more satisfying life. WRAP helps the mental illness. Although all states provide person understand what wellness looks like for health proxies in general, about half for them, detect early warning signs and offer specific procedures for mental health triggers, and explore thoughts, feelings, treatment.49 Learn more: www.nrc-pad.org 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: www.mentalhealthrecovery.com

Helpful Websites National Alliance for Caregiving On Pins & Needles: Caregivers of Adults with Mental Illness www.caregiving.org/mentalhealth National Alliance on Mental Illness (NAMI) What HIPAA Means for Mental Illness www.nami.org/About-NAMI/NAMI-News/Understanding-What-HIPAA-Means-for-Mental-Illness National Resource Center for Psychiatric Advance Directives www.nrc-pad.org Wellness Recovery Action Plan (WRAP) www.mentalhealthrecovery.com

U.S. Department of Health and Human Services (HHS) Office of Civil Rights; Sharing Health Information with Family and Friends www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/consumers/sharing-family- friends.pdf

48 Copeland, ME; (N.D.) What is WRAP? http:// mentalhealthrecovery. com/wrap-is/

49 National Resource Center for Psychiatric Advance Directives: http:// www.nrc-pad.org/

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12: Taking Care of Yourself

Introduction Background: Mental Health Caregivers An estimated 8.4 million Americans provide Mental health caregivers experience many care to someone with mental illness.50 challenges. You are not alone. Millions of Being an effective caregiver is difficult, and other caregivers express high levels of stress, to meet the challenge, you need to take financial issues, isolation, and concerns for care of yourself. Sounds simple. Those who the future. Studies of the caregivers of adults provide care know otherwise. There are with mental illness found that: many barriers to caring for yourself such as setting aside time, finding resources, and the • Mental health caregivers experience higher tendency to put yourself last. levels of stress than other family caregivers.

Taking care of yourself is the most important • The typical mental health caregiver thing that you can do, not only for yourself, provides an average of 32 hours of care but also for the person you care for and the per week for an average of nine years. rest of the family. Family caregivers carry Mental health caregivers address their care the weight of not only providing personal recipient’s needs for more hours a week and instrumental care (e.g., running errands, and more years on average, than caregivers medications), but they often have to manage for other conditions. other responsibilities. What do you do when • Care recipients are likely to be financially you get tired? Keep going? What do you do dependent upon family and friends when you need help? Keep going? What (49%-64%). happens when you cannot go anymore? Taking care of yourself includes recognizing • Few parents who are mental health when you need help to balance your own caregivers have plans in place for someone physical, emotional, financial, social, and to care for their son or daughter when they 50 This is a minimal spiritual needs. can no longer do so (32%). prevalence projection based on national estimates of caregiving prevalence from Caregiving • Parents who care for people with mental in the U.S. 2015 (see On Pins & Needles: Caregivers illness say their caregiving role has made of Adults with Mental Illness, 2015).

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their own health worse (62%). As they Caregiver Health Self-Assessment continue to age and provide care, they may Questionnaire: Spanish be forced to rely on others, yet 65% of www.caregiving.org/wp-content/ parent caregivers reported that there were uploads/2010/11/caregiverselfassessment_ no other family members or friends for spanish.pdf their adult child to turn to for assistance.51 Physical Health Taking care of yourself includes physical Challenges Facing Mental Health activity, sleep, and diet, at a minimum.

Caregivers Physical activity has many benefits that are •Loneliness, isolation, lack of social support well documented, although for caregivers, it is difficult to find the time to fit it in. A • Health issues related to the stress of short walk can bring benefits and can be caregiving accomplished with a mindful approach and some planning. The following are some tips • Navigating the care system to include regular physical activity: • Accurate and timely diagnosis for the • Set a timer for taking a walk. care recipient • Plan your route ahead of time. • Medication management • Bring walking shoes with you or keep them • Planning for the future in your car. • Mental health caregiver training • For smartphone users, consider and education downloading an app such as “Map My Walk” (free) to help provide motivation What You Can Do to Take Care of related to calories burned, distance, etc. Yourself There are several ways you can care for • Set a goal for your walk such as 20 minutes yourself as you continue your caregiving to start, which can be 10 minutes one way, journey. The National Alliance for Caregiving 10 minutes back. (NAC) provides a Caregiver Health Self- Assessment Questionnaire on their website • If leaving the home is a barrier to physical (see below). The tool helps you look at your activity look around your home for own situation, consider options, and make opportunities to exercise. For example, decisions that will allow you to take care of climbing stairs if that is accessible to you, yourself within the context of your caregiving running in place, or floor stretches. There responsibilities. are several online programs that provide guidance for in-home exercises. Caregiver Health Self-Assessment Questionnaire: English • Although it can be a challenge at times, eating www.caregiving.org/wp-content/ well is important. Eating a balanced diet is 51 National Alliance for important for your overall health, and for your Caregiving (2015). On Pins uploads/2010/11/caregiverselfassessment_ & Needles: Caregivers of ability to care for the person you love. Adults with Mental Illness. english.pdf

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• Stay hydrated by drinking plenty of water your journey as a caregiver. There are many and minimize alcohol intake during stressful ways to improve your emotional health: times. • Caregiver support groups are a wonderful • Sleep is important. Get as much way to connect with others who are on a uninterrupted sleep as you can. When you similar journey. There are many types of cannot sleep through the night, find times groups such as condition-specific, gender- to nap, even for short periods of time. specific, online, or in-person groups.

Spiritual Health • Social support is critical to emotional Attending to your spiritual side can take many health. Set aside time on a regular basis to forms, including prayer, meditation, yoga, meet a friend for coffee, or have a friend spending time in nature, personal writing, or come visit you, if even for a short time. attending worship services. The main benefit of spiritual practice for caregivers is the time • Do something for yourself. Take yourself you dedicate to yourself. One thing we know to a movie or dinner. Although time is about caregiving is that it leaves very little often the main issue, it is important to find time for you. There are many ways to infuse some time for your needs so that you can spiritual activities into daily life: continue to care for the care recipient. Your local Area Agency on Aging may be able to • Take a walk in a place that is quiet or provide resources for respite care. peaceful. Financial Health • Access to the internet allows those who Taking care of yourself means taking care can’t get away to take a few moments for of your finances. Caring for a care recipient an online yoga class, meditation lesson, or can often mean out-of-pocket expenses writing group. that quickly add up. Meeting with a financial advisor can help you feel more in control • Your local library can provide an escape, if of your finances and even help you make even for a moment. There are many books informed decisions about your care situation. with topics related to spirituality. Financial advisors can be found at your local • Local groups found on meetup.com or bank, or local aging network groups such as through your community center or senior senior centers or your Area Agency on Aging. care center can often provide resources.

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

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Helpful Websites AARP–Caregiving www.aarp.org/home-family/caregiving Caregiver Action Network caregiveraction.org Family Caregiver Alliance www.caregiver.org National Alliance for Caregiving www.caregiving.org National Alliance for Mental Illness www.nami.org/Find-Support/Family-Members-and-Caregivers

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About the National Alliance for Caregiving Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance supports a network of more than 80 state and local caregiving coalitions and serves as Secretariat for the International Alliance of Carer Organizations (IACO). Learn more at www.caregiving.org.

About the National Alliance on Mental Illness NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.