How do I create a long-term care plan for my loved one who is living with a serious mental illness?

To begin with, you may wish to consult the Life Care Planning FAQs page of the Special Needs Alliance that provides an overview of the long-term planning process for loved ones with disabilities, covering topics such as securing public benefits, guardianships/conservatorships, planning for disabilities, arranging for a Special Needs Trust and/or an ABLE Account, and special education issues.

Connecting with the Behavioral Health Services Network in Your Community

If you have not already, you will want to begin to investigate and become connected to the Community Behavioral Health Services support network in your/your loved one’s community. This network will guide you to resources in your community that include social, vocational, housing, educational and other support programs. In general, comprehensive community services are available to people who qualify for disability income or other public assistance.  
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). 
Additionally, you may wish to review the Psychosocial Treatments page of NAMI’s website.  Psychosocial treatments include different types of psychotherapy and social and vocational training and aim to provide support, education and guidance to people with mental illness and their families. 
To find services in your community, contact your state or county behavioral health department or your local NAMI Affiliate. To find your nearest NAMI Affiliate, click on your state through the Find Your Local NAMI menu. 

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. 
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.
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.
Additionally, 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.

Qualifying for Supplemental Security Income/Social Security Disability Income 

Unless you and your family can pay out-of-pocket for private, long-term care, you may want to explore whether your loved one qualifies for disability benefits that will provide a guaranteed income and access to Medicare and/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 when applying for service. In many cases, if a person is receiving disability income, their housing and services are covered monthly by no more than a payment of one-third of their monthly disability income.
You may wish to consult the “ Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI)" page of NAMI’s website that provides an overview of each type of assistance and thresholds for qualification. Additionally, 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)".
Navigating the Social Security Disability Income (SSDI) application process can be challenging. We would suggest consulting the following resources: 

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 accompany mental illness. Among them:
  • Clubhouses and Consumer Run Drop-in Centers (CRDIs)

    Clubhouses and CRDIs provide a model of community mental health service that offers a support system for people with serious mental illness, offering opportunities for friendship, work training and placement, educational opportunities in a single, caring and supported environment.   

    For a list of clubhouses and CRDIs in your area, contact your local NAMI Affiliate or community behavioral health service.  Additionally, you may wish to consult Clubhouse International that offers an online locator to find a program in your area.  
  • 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, and 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.
Additionally, 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 abuse 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 local NAMI Affiliate or community behavioral health service.  

Still need help? Contact Us Contact Us