How do I create a long-term care plan for my loved one who is living with a serious mental illness?
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.
Additionally, you may wish to review the “
" 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
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.
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
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.
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.
The level of care your loved one needs will dictate the type of long-term facility or housing appropriate for them.
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.
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.