Resources for the Caregiver Community

Being a caregiver to someone with schizophrenia can be challenging. Mental, emotional, and physical stress are common. Dealing with health insurance, finances, housing, and more can be hard to manage. Thankfully, there are many caregiver resources that can help.^1,2

Getting started

Sorting through all the potential resources to figure out what is best for you or your loved one may feel overwhelming. A great place to start is with your loved one’s primary care doctor or psychiatrist. They often have local resources they can recommend.

Some clinics also have case managers or social workers to help guide you to resources. Mental Health America also has an in-depth getting started guide for new mental health caregivers.³

Other common sources of support are listed below. This is not a complete list of all potential options, but they are great starting points. The exact resources you need will vary. Keep open lines of communication with your loved one and their healthcare team so you can adjust to changing needs over time.

Immediate support

It is important to know who to call in times of crisis. These are times when symptoms are severe and it becomes unsafe to care for your loved one on your own.

Resources for times of crisis include:

• Substance Abuse and Mental Health Services Administration (SAMHSA) Helpline – For immediate needs around mental health or substance use, you can call the SAMHSA helpline at 1-800-662-4357 (1-800-662-HELP). Or you can text your zip code to 435748 (HELP4U). The helpline is available all day, every day. SAMHSA is also a great resource for general information and support.
• 988 Suicide Crisis Lifeline – You can text or call 988 for immediate crisis support, including if you or your loved one has thoughts of harming themselves or others. You can also chat online with a crisis counselor.
• National Alliance on Mental Illness (NAMI) HelpLine – NAMI provides information, support, and a helpline. The NAMI HelpLine is available Monday through Friday, 10 AM to 10 PM EST. Call 1-800-950-NAMI (1-800-950-6264) or text 62640 to reach the helpline. Or you can use the online chat.

General information and treatment resources

Schizophrenia is a complex health issue that can be hard to understand. Even if you have been caring for someone with schizophrenia for a long time, new questions can arise. Finding accurate information about schizophrenia and its treatment will always be a need for caregivers.⁴

Common sources of reliable information and treatment locations include:

• MedlinePlus Caregivers – This website by the National Library of Medicine offers information for caregivers and a variety of different resources.
• FindTreatment.gov – Here you will find a national database for mental health and substance use treatment options. The database includes healthcare providers and facilities. You can also search for your state’s agency that oversees treatment resources.
• National Institute of Mental Health – This is a department within the National Institutes of Health (NIH) that focuses on providing information about many mental health conditions. The information is easy to understand and focuses on treatment planning, general information, and sources of support.
• Administration for Community Living – This organization is dedicated to providing programs, research projects, and general support to caregivers to improve quality of life.
• National Institute on Aging – This department within the NIH focuses on understanding the needs of aging adults and on supporting caregivers. Even if you are not a caregiver for an older adult, you can find many helpful resources here.
• Family Caregiver Alliance Guide to Community Resources – This organization aims to improve the lives of family caregivers. They offer information in several languages, including Spanish, Chinese, Vietnamese, and Tagalog.

Resources for children and adolescents

While it is rare, some people are diagnosed with schizophrenia during their school-age years. This can be a challenging time for caregivers.⁵

Resources that can help you care for a child with schizophrenia include:

• SAMHSA mental health grant programs – Offers several programs that families can apply to for mental health support for children.
• SAMHSA Centers of Excellence for Behavioral Health Disparities – This organization helps improve access to and coordination of mental healthcare for children across the country.
• American Academy of Child and Adolescent Psychiatry (AACAP) – This organization has resources, answers to common questions, expert videos, and up-to-date research news for common mental health conditions that affect kids.
• Child Mind Institute – This organization provides information and support to families and parents of kids with mental health issues. They also have parenting guides for behavior challenges and learning differences, too.
• Children’s Hospital of Orange County (CHOC) Individualized Education Program (IEP) resources for parents – This guide is a collection of information, step-by-step instructions, and general guidance around putting an IEP in place. An IEP is a plan agreed upon by families, teachers, and school staff to help children with certain health conditions or learning needs do well in school. An IEP may grant extra breaks, more time on assignments, or access to extra learning tools.

Understanding and getting health insurance

Managing a long-term health issue like schizophrenia can be expensive and hard to coordinate. There are several places you can look for information about health insurance, how to apply, and what services are covered. Case managers and social workers at your healthcare clinic can help with sorting through these resources, too.⁶

Options for support with health insurance include:

• HealthCare.gov insurance marketplace – The Affordable Care Act (ACA) paved the way for this national resource that offers health insurance plans based on household income. People without insurance who do not qualify for coverage elsewhere can use this marketplace.
• US Department of Health and Human Services mental health and substance use insurance help – This website has information on health insurance related to mental health. The site also describes healthcare coverage rights and how to file a complaint if you were denied coverage for something that should have been covered.
• Medicaid and Medicare information and application support – Medicaid and Medicare are 2 common federal health insurance plans. They target people who are older, disabled, or have lower incomes. These options can be confusing to navigate, but each program has resources for applying and understanding benefits.

Additional sources of support

The above resources are not the only places to go for help. Other needs will arise, too. Examples of some of the many additional sources of support include:

• US Social Security Administration disability benefits information – This website walks you through the process of applying for disability benefits.
• Patient Access Network Schizophrenia Assistance Program – This program provides monthly grant money to those with schizophrenia for help with housing, drug costs, and more.
• SAMHSA homelessness programs and resources – SAMHSA aims to help people with mental health conditions avoid or transition out of homelessness.
• Family Caregiver Alliance caregiver online support group – The Family Caregiver Alliance offers an email-based support group for caregivers of people with all types of chronic conditions.
• NAMI family support group – NAMI conducts peer-led, in-person support groups dedicated to mental health caregivers.

Talk with your loved one’s healthcare team about what resources might be best in your case. They can also help connect you with support to maintain your own well-being and stamina as a caregiver.