How do I create a long-term care plan for my loved one who is living with a serious mental illness?
The National Alliance for Caregiving offers an excellent resource, Circle of Care: A Guidebook for Mental Health Caregivers (see the section on community services, beginning on page 30).
You may also wish to review the Psychosocial Treatments page of NAMI’s website. Psychosocial treatments include different types of psychotherapy and social and vocational training. These programs aim to provide support, education and guidance to people with mental illness and their families.
Connecting with Local Services
If you have not already, we encourage you to contact a community behavioral health center (CBHC) in your loved one’s area. Local behavioral health agencies tend to offer the most comprehensive programs and resources for people living with serious mental illness. They may be able to connect you with social, vocational, housing, education, and support programs for your loved one. The agency might suggest that your loved one enrolls in a treatment program like Assertive Community Treatment (ACT) to receive these supports, or they may link you with separate care planning resources in your loved one’s community. You can find your local CBHC by dialing 2-1-1 or by searching online for “community mental health [city] [state].”
Another way to find care planning resources in your loved one’s community is to dial 2-1-1 and ask about social, vocational, housing, and education programs in the area. The local NAMI in your loved one’s community is also a great resource for learning about supportive programs available to those with serious mental illness. To find their nearest NAMI affiliate, you can click on your loved one’s state through the Find Your Local NAMI menu. You can also connect with 211 and your local NAMI to
Guardianship
You may have encountered that the laws involving involuntary treatment are extremely limited in the U.S. You and your family may need to explore the option of securing some level of legal guardianship for your loved one. Be aware that this can be a lengthy process that will require time, legal representation and financial resources; guardianship laws vary by state, and in many cases, by the locality in which you may be seeking guardianship. For more information on the guardianship process, the National Guardianship Association provides a helpful guide.
Qualifying for Supplemental Security Income (SSI)/Social Security Disability Income (SSDI)
For many families, applying for disability benefits like SSI and SSDI is the first step to accessing other community services and programs. Qualifying for disability benefits typically qualifies people for public health insurance coverage under Medicare or Medicaid. For many county services, being qualified by the Social Security Administration for disability income and receiving Medicaid and/or Medicare is a primary consideration for service eligibility. If a person is receiving disability income, their housing and services are often covered monthly by no more than a payment of one-third of their monthly disability income. More options for private, long-term care may be available to families who can pay out of pocket for those services.
You may wish to start by visiting NAMI’s Understanding Health Insurance webpage, which explains the basics and can help you to begin navigating the system successfully. You may also wish to consult the Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) page of NAMI’s website, which provides an overview of each type of disability assistance and an explanation of who qualifies. Information on both forms of disability can be found on the website of the Social Security Administration at Supplemental Security Income (SSI) Benefits and Disability Benefits (SSDI).
You can apply for SSI/SSDI through your local Social Security office. Click here to find your local Social Security Administration office. You can also apply online through the Social Security Administration website or contact them at (800) 772-1213.
Navigating the Social Security Disability Income (SSDI) application process can be challenging. If you run into challenges during the application process or if you feel you were unfairly denied, follow up directly with your local Social Security office. Other resources to help you understand SSI/SSDI benefits and appeal a decision if you have been denied SSI/SSDI are included below.
Appealing a Denied SSI/SSDI Claim
- The Social Security Administration has a webpage and handbook with instructions for making an appeal if your application for SSI/SSDI has been denied.
- National Organization of Social Security Claimants’ Representatives (NOSSCR), (800) 431-2804, provides referrals for paid representation of persons seeking SSI. The website also has a helpful Seeking Benefits webpage that includes instructions for making an appeal if your application for SSI/SSDI has been denied.
- National Association of Disability Representatives (NADR), (800) 747-6131, provides referrals for paid lawyers/non-lawyers representatives to assist in accessing SSI/SSDI.
If you have questions or concerns about Medicaid and Medicare eligibility or benefits, contact the Centers for Medicaid and Medicare Services (CMS) or call (800) 633-4227. Many people have also secured Medicare and Social Security assistance through the Medicare Rights Center, which provides their MRC Consumer Hotline at (800) 333-4114.
Supported Housing
The level of care your loved one needs will dictate the type of long-term facility or housing appropriate for them.
You may want to begin by consulting the “Secure Stable Housing" page of NAMI’s website to learn about options for those living with a mental health condition. You may also find Mental Health America’s webpage that discusses housing options for persons living with a mental health disability beneficial.
The Directory of Centers for Independent Living (CILs) and Associations provides information on home-sharing programs across the nation. “Center for independent living” refers to a community-based, cross-disability, nonresidential private nonprofit agency that is designed and operated within a local community by individuals with disabilities and provides an array of independent living services.
If you seek a long-term, private assisted living facility for your loved one, the article, “Assisted Living: Weighing the Options" may provide you with very helpful information on options and next steps.
Supported Living/Social Needs
Many community programs offer social and recreational activities to reduce the isolation, loneliness and stigma that so often come with mental illness. Among them:
- Clubhouses and Consumer Run Drop-in Centers (CRDIs)
Clubhouses and Consumer Run Drop-in Centers (CRDIs) provide a model of service that offers a support system for people living with serious mental illness. These centers offer opportunities for friendship, work training and placement, and educational opportunities in a caring, supported environment.
Clubhouse International offers an online locator to find a clubhouse program in your area. You may also find a clubhouse program by reaching out to your local NAMI Affiliate or community behavioral health service.
- Peer Support Specialists
Peer support specialists are people who have been successful in the recovery process and who help others experiencing similar situations. Through shared understanding, respect and mutual empowerment, peer support workers help people become and stay engaged in the recovery process and reduce the likelihood of relapse. Peer support services can effectively extend the reach of treatment beyond the clinical setting into the everyday environment of those seeking a successful, sustained recovery process.
For a list of peer support specialist programs in your area, contact your local NAMI Affiliate or community behavioral health service.
Supported Employment
Individual Placement and Support (IPS) is a supported employment model designed to help individuals with mental illness find jobs that match their individual strengths and interests. IPS programs prioritize rapid job search and placement. They are also available to provide support to help the person succeed in the workplace. The model calls for employment services to be integrated into the individual’s overall mental health treatment plan, with an employment specialist working as a member of the treatment team.
Assertive Community Treatment (ACT) programs (as well as IPS programs) include supported employment as part of their array of services. ACT, an evidence-based program designed for people living with serious mental illness, uses a multidisciplinary team approach, offering comprehensive mental health services. In addition to supported employment, the array of ACT services includes mobile crisis intervention, illness management and recovery skills, individualized supportive therapy, substance use management, medication management, assistance with daily living skills, connections to community services, supported housing and transportation.
ACT teams have small caseloads with services available 24/7 in locations such as home, work or in the community. ACT incorporates employment services directly into the treatment team and planning rather than referring individuals to outside organizations. ACT teams typically have vocational specialists who develop contacts with employers and search for potential employment opportunities. Regardless of whether the ACT team has an employment specialist, all members of the clinical team are expected to support individuals in reaching their employment goals. ACT employment services focus on individual strengths and interests with no time limit on services.
To find an IPS or ACT program in your area, contact your community behavioral health service or local NAMI Affiliate.
Guardianship
If your loved one is unable to make sound medical and mental health treatment decisions on their own, you and your family may wish to explore the option of securing legal guardianship for your loved one. Be aware that this can be a lengthy process that will require time, legal representation and financial resources; guardianship laws vary by state, and in many cases, by the locality in which you may be seeking guardianship. For more information on the guardianship process, the National Guardianship Association provides a helpful guide.
You might find the Guide to Psychiatric Crisis and Civil Commitment Process, developed by our NAMI Virginia State Organization, helpful. It provides a comprehensive overview of each step of the process. Keep in mind that this is reflective of Virginia laws regarding involuntary commitment. You will want to investigate the laws applying to your state. A helpful resource for this is The Treatment Advocacy Center, which maintains a section of its website dedicated to civil commitment laws in each state. You can use the Treatment Advocacy Center's "Look Up
Your State" webpage to find civil commitment laws specific to your state.
If you wish to move in this direction, the Special Needs Alliance is an organization that provides additional information on the guardianship process as well as legal referrals to attorneys skilled in this area.
You may want to reach out to your local NAMI affiliate to ask if there is a family member in your community who has gone through the process and who would be willing to share their experience and answer questions you may have.
Psychiatric Advance Directives
You may wish to consult the “Psychiatric Advance Directives" page of NAMI’s website that discusses this useful legal tool that allows a person to prepare a mental health care crisis plan should the crisis prevent them from being able to make decisions regarding their care. The Special Needs Alliance provides additional information on planning for this, as well as legal referrals to attorneys skilled in this area.
If you are having trouble applying for federal benefits or getting assistance from a federal agency, you can reach out to your members of Congress for help. More information about how to do that can be found here.
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