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.
You may have encountered that the laws involving involuntary treatment are extremely limited in the United States. At some point 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, extremely helpful. It provides a comprehensive overview of each step of the process. (Keep in mind that this is reflective of Virginia Commonwealth’s laws regarding involuntary commitment; you will want to investigate the laws applying to the state in which you are living. 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 with you their experience and answer questions you may have about the process.
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 plan for care should a mental health 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 are able to pay out-of-pocket for private, long-term care, you may want to explore whether or not 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:
- Social Security Administration is the agency that administers and manages the Social Security Income (SSI) application process. Three options for applying for benefits:
- Allsup is an organization specializing in disability services and helping individuals navigate the process of applying for SSDI. They offer free, expert representation in this process and can be reached at (800) 279-4357 or by email at firstname.lastname@example.org.
- National Association of Disability Representatives (NADR), (800) 747-6131, provides referrals for fee-for-service lawyers/non-lawyers representatives to assist in accessing SSI/SSDI.
- National Organization of Social Security Claimants’ Representatives (NOSSCR), (800) 431-2804, provides referrals for paid representation of persons seeking SSI.
- 211.org (also by calling 211 from any phone) can provide referrals to access a range of public benefits, including SSDI.
Finally, 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.
The level and type of need for your loved one’s care will dictate the type of long-term facility or housing needed. The predominant need (e.g., supporting a mental health condition vs. a physical disability) will determine the appropriate long-term care setting.
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 the page on the website of Mental Health America 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 following article from AARP may provide you with very helpful information on options and next steps to learn more about each: Assisted Living: Weighing the Options.
Supported Living/Social Needs
Many community programs offer social and recreational activities to reduce the isolation, loneliness, and stigma that so often accompany mental illnesses. Among them:
- “Clubhouse” 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 living 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.
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 yet are available to provide continuous 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 to individuals whenever and wherever needed. 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 hours a day, seven days a week 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.