3. Access to Treatment
3.1 Access to Treatment
(3.1.1) NAMI believes that individuals with mental illnesses must have access to treatments that have been recognized as effective by the Food and Drug Administration (FDA) and the National Institute of Mental Health (NIMH).
NAMI is adamant that individuals with mental illness have access to clinically appropriate medications, evidence based services and treatment, including psychotherapy, that are provided in a person centered approach.
(184.108.40.206) NAMI strongly opposes measures that are intended to limit, or actually do limit, the availability and right of individuals with mental illnesses to receive treatment with the most individually appropriate, effective, and clinically indicated medications.
(220.127.116.11) No one currently taking a medication and doing well on that medication should be switched to another medication, even the generic version of the original, simply because the second medication is cheaper.
(18.104.22.168) Psychotherapy should be a part of the treatment regime for individuals with mental illness when the treatment team, including the consumer, determines that this is an appropriate option.
(22.214.171.124) The individual with mental illness should have the right to engage their preferred provider or change providers as meets their needs.
3.2 Early Diagnosis
(3.2.1) Early diagnosis and early initiation of treatment are both medically and clinically effective and cost effective. However, safeguards must be established to ensure against the abuse of over-diagnosis and over-prescribing of medications, particularly with children, adolescents, people of color and persons who are elderly.
(3.2.2) NAMI urges states to follow the broad mandate included in the federal Medicaid law that requires states to provide early and periodic screening, diagnosis and treatment (EPSDT) for Medicaid eligible children and adolescents. Under EPSDT, Medicaid eligible children are entitled to health care screenings, including mental health screens, and access to all medically necessary mental health services necessary to improve the child’s condition. Treatment plans for children and adolescents should be reviewed, at a minimum every three months, however more often when clinically indicated to ensure the safety of children and youth and when medications are prescribed and/or dosages are modified.
3.3 Mental Health Screening
(3.3.1) NAMI strongly supports Goal 4 of President Bush’s New Freedom Commission report on mental health issued in July 2003 and calling for early mental health screening. In this nation, approximately 10% of children and adolescents have mental illnesses, yet only 20% of them are identified and receiving services. Mental health screening is essential to address this gross under-identification of youth with mental illnesses. Research shows that early identification and intervention leads to better outcomes and may lessen long-term disability. It also avoids years of unnecessary suffering.
(3.3.2) Screening for the health and well being of children is a well-established practice in this country. We screen for vision, lead poisoning, hearing, scoliosis, tuberculosis, appropriate developmental progress and more. Campaigns of misinformation, stigma and fear must not stand in the way of appropriately identifying youth with mental illnesses and intervening with appropriate services.
(3.3.3) Federal, state and local leaders should take affirmative steps to implement mental health screening for children and adolescents, with the following guidelines and protections in place:
(126.96.36.199) Mental health screening must be voluntary and available for all children.
(188.8.131.52) Parental consent or consent from legally authorized surrogates must be obtained for all mental health screening.
(184.108.40.206) Mental health screening must not be used in a discriminatory manner.
(220.127.116.11) All individuals administering mental health screening must be appropriately trained and qualified both to administer the screening instruments and to interpret the results.
(18.104.22.168) All information related to screening must be kept strictly confidential and the privacy of youth and their families must be protected.
(22.214.171.124) All mental health screening instruments must be shown to be reliable and effective in identifying children in need of further assessment.
(126.96.36.199) Validity studies must be done to ensure that screening instruments are culturally and linguistically appropriate and administered in a manner appropriate for culturally and racially diverse communities.
(188.8.131.52) Schools must never use mental health screening results or the refusal to consent to screening as a basis for any adverse action against a child or family.
(184.108.40.206) All children identified through screening as potentially requiring mental health services must be referred for an immediate comprehensive mental health evaluation by a qualified and trained professional.
(220.127.116.11) Children ultimately identified as requiring mental health services must be immediately linked to and offered appropriate treatment and services and provided with comprehensive information about treatment options, the mental health treatment system, and family and community support resources.
(18.104.22.168) Early identification and intervention must be part of a national effort to build a comprehensive children’s mental health system of care for the millions of children and adolescents who require these services and their families. Families with children living with mental illnesses deserve nothing less.
3.4. Individual Treatment Plan
(3.4.1) Every person with a serious mental illness must have an individual treatment plan (ITP) responsive to his or her changing needs. The plan needs to include, but not be limited to, health care, education, housing, rehabilitation services, and community support services. Treatment for persons with serious mental illnesses, who have other disorders or disabilities, including co-occurring mental illness and substance use disorders, should encompass a wide array of options. Options should be determined by the consumer in conjunction with family members and those significantly involved in treatment and service provision.
(3.4.2) A treatment plan reflecting assessed needs may include a range of available services. Criteria for determining the treatment plan should include assessment of behaviors resulting from changes in life circumstances as well as the skills development and social supports needed to respond to these changes.
3.5 Outpatient Treatment
(3.5.1) Outpatient treatment must be readily accessible to the individual in his or her own community. The treatment options must include appropriate medications including new-generation medications, symptom therapy, psychotherapy, assertive community treatment (ACT), rehabilitation and peer support. Evidence based practices such as dialectical behavior therapy and cognitive behavioral therapy should be available as options for treatment.
(3.5.2) Easily accessible emergency services must be readily available 24 hours a day, seven days a week, and should be accessible to crisis intervention teams of local police departments. If a person has a serious mental illness and is subject to arrest, specially trained personnel must have authority to determine the intervention needed and to refer to the appropriate level of care. All emergency services, including those in inpatient hospitals, must be staffed by trained mental health professionals.
(3.5.3) Partial hospitalization, also known as day treatment programs, should be used selectively with monitoring to ensure that the stay is goal-oriented.
(3.5.4) Community systems must be comprehensive, person-centered, and integrated. These systems should include medical, dental, daily-living skills, peer support, supported housing, education, pre-vocational and vocational training and a broad array of services that support wellness, resiliency and recovery.
3.6 Inpatient Treatment
(3.6.1) Inpatient treatment means treatment in any licensed hospital with 24 hour staffed psychiatric beds. An inpatient facility must be equipped to serve people at risk of harm to self or others or who are gravely disabled and in need of a safe, secure setting that is patient and family centered, recovery oriented, culturally sensitive, prepared to provide comprehensive treatment as well as rehabilitation, recovery opportunities and provides a discharge planning process that connects individuals to appropriate community services, supports and housing.
NAMI believes that every psychiatric inpatient facility must be held to the same standards of excellence demanded of every medical general and tertiary care hospital. People with mental illness who require inpatient care have a right to expect and receive timely state of the art medical and psychiatric treatment, delivered by an adequate number of competent hospital staff in a safe and secure environment.
(3.6.2) Acute inpatient treatment is necessary when a person with a primary psychiatric diagnosis or co-occurring disorder is in need of urgent care because of a rapid escalation of symptoms and is likely to respond to treatment in a relatively short period of time and to be ready for reintegration into the community with appropriate community treatment, supports and housing.
(3.6.3) Longer term inpatient treatment is required when a person with a primary psychiatric diagnosis or co-occurring disorder has symptoms that are intractable or their functioning is impaired such that the person requires a longer duration of treatment. Treatment must provide further stabilization, engage the person in comprehensive treatment and incorporate rehabilitation and recovery activities. A hospital and community discharge planning team must work with the person, their family and community providers to transition the person to the least restrictive level of care that promotes resiliency and recovery.
(3.6.4) NAMI believes that both acute and longer term inpatient treatment are vital components in the array of treatment interventions and services that are necessary to assure a timely and durable recovery from the symptoms of mental illness. Recognizing that psychiatric inpatient treatment may be involuntary or otherwise restrictive of a person's freedom, it must only be initiated after a competent and comprehensive clinical evaluation by an appropriately licensed mental health professional that demonstrates the clinical need for inpatient care. It must be directed by an individualized treatment plan (ITP) and result in discharge to appropriate treatment and services as soon as inpatient treatment goals are met. No one should be retained in inpatient treatment when such treatment is no longer clinically indicated. It is the responsibility of the inpatient facility to work with the person, their family and community providers to develop appropriate community treatment, supports and housing that will be in place upon discharge. Discharge from inpatient treatment should never be determined by a facility's need to address its census issues.
3.7 Family Involvement in Treatment
(3.7.1) Family members are a central resource in the treatment of children and adults living with serious mental illnesses and should be an integral part of the treatment team and empowered to facilitate mutually agreed upon treatment team goals. Research overwhelmingly shows that when families take an active part in treatment decisions, consumer outcomes are better. While families do not cause serious mental illnesses, families bring a knowledge of and relationship with the consumer that is unique and can be a significant help in determining the best course of treatment and recovery.
(3.7.2) In no case should the presence of a loving, caring family be used as a substitute for a delivery system that provides for all of the person's treatment and rehabilitative needs leading to recovery, resiliency and wellness.
(3.7.3) The consumer is the reason the mental health treatment system exists. The consumer–or in the case of an unemancipated child, the child's representative–is the most important member of the treatment team.
The consumer should be encouraged to participate fully in planning, monitoring, and evaluating treatment. Other treatment team members should assure that their focus is on meeting the consumer's needs, not the desires of the system or service providers.
(3.7.4) Consumers and family members must be treated with compassion, dignity and respect. They must also be provided with extensive education to understand all aspects of the illness in order to be more effective in treatment leading to the consumer’s recovery, resiliency and wellness.
(3.7.5) Family and consumer advocacy should always be encouraged. In circumstances where the mental health system is understaffed, under-financed, and services uncoordinated, or other problems impede proper service delivery, family and consumer advocacy is effective and powerful.
(3.7.6) Sometimes, because of stigma and lack of information regarding serious mental illnesses, the family is not involved. Their absence does not usually indicate that they have no concern for their loved one's well being. Mental health workers must understand this and work to strengthen family relationships. When family members become educated and are respectfully involved, in a way they experience as empowering, their approach to the individual with mental illness and the treatment system changes.
(3.7.7) In such cases where consumers do not want their family members involved, their wishes must be respected. At the same time, extensive educational efforts should be made to help these consumers understand that their families are not to blame for the illness and that recovery is more likely if all interested parties work together.
(3.7.8) All treatment and services provided to children living with serious mental illnesses living with their families should be child centered and family driven, with the needs of the child and family dictating the types and mix of services provided. The families, surrogate families and legal guardians of children with serious mental illnesses should drive the treatment planning and delivery process, in close consultation with the treating providers. Children living with serious mental illnesses should be included in all aspects of treatment planning whenever possible.
Family driven means that the treatment provider gives the family the information and skills to make informed decisions as equal partners in the treatment planning and delivery processes.
Families must have a primary decision making role in the care of their own children as well as the policies and procedures governing care for all children in their community, state, tribe, territory, and nation. This includes:
• choosing supports, services, and providers;
• setting goals;
• designing and implementing programs;
• monitoring outcomes;
• partnering in funding decisions; and
• determining the effectiveness of all efforts to promote the mental health and well being of children and youth.
(3.7.9) Child-serving systems and their funding mechanisms should be designed to allow families with children living with serious mental illnesses to easily access appropriate mental health and related services. Child-serving systems should be designed with cross-system and interagency collaboration to ensure an appropriate coordination of services for children and families. Families should not be required to navigate multiple, complex and overly bureaucratic systems to access appropriate services for their child.
3.8 Outcome Measures
NAMI believes that community-based services must include regular measurements of consumer and family satisfaction and dissatisfaction with these services. These measurements are best conducted by independent consumer and family satisfaction teams who interview service recipients using continuous quality improvement methodology.
3.9 Non-endorsement of Specific Medications or Treatment Modalities
As a matter of policy, NAMI does not endorse any specific treatment or service for mental illnesses. NAMI does advocate evidence based programs and practices, best practices, promising practices and clinical practices when they apply to the population being treated.
3.10 Access to Psychiatric Medications
(3.10.1) NAMI supports the following integrated and comprehensive federal strategies to ensure open access to psychiatric medications.
(22.214.171.124.) Increase the Federal Medical Assistance percentage (FMAP);
(126.96.36.199) The Medicare prescription drug benefits must provide full access to psychiatric medications;
(188.8.131.52) Advocate with the Center for Medicaid and Medicare Services (CMS) to provide written guidance on carve outs to Medicaid directors;
(184.108.40.206) Support increased funding to NIMH for research on psychiatric medications and access to these medications.
(3.10.2) NAMI supports the following integrated and comprehensive state strategies to ensure open access to psychiatric medications:
- Oppose, at all costs, “fail first” provisions in state laws and policies;
- Support efforts by pharmaceutical companies to develop new medications but oppose pricing practices that make these medications unaffordable;
- Support adjunctive education programs about psychiatric medications and safe prescribing practices;
- Support the development of explicit medication access protocols.
3.11 Prescription Privileges for Psychologists, Workforce Shortages
NAMI does not endorse proposals currently before state legislatures to expand prescribing privileges to psychologists. NAMI acknowledges that serious shortages exist in the mental health professional workforce, particularly in public mental health systems and in rural and medically under-served regions of the country. However, there is no current evidence that expanding prescribing privileges to psychologists will address these shortages.
Additionally, NAMI calls upon the Substance Abuse and Mental Health Services Administration (SAMHSA), working in coordination with the National Institute of Mental Health (NIMH) and other relevant federal agencies, to undertake a national study and issue a report evaluating the scope and extent of workforce shortages in the mental health field, describing the impact of these shortages on access to quality care and treatment for people with serious mental illness, and recommending strategies for attracting and retaining qualified professionals in the mental health field, including in rural or medically under-served regions of the country.
3.12 Cultural Competence
(3.12.1) Cultural competence is a goal toward which all professionals, agencies and systems must strive. Becoming culturally competent is a developmental process that incorporates—at all levels—the importance of culture, an assessment of cross-cultural relations, vigilance about the dynamics that result from cultural differences, the expansion of cultural knowledge and the adaptation of services to meet cultural needs. It is also a developmental process that can improve the quality of care and mental health service delivery system for all Americans.
(3.12.2) Culture is broadly defined as a common heritage or set of beliefs, norms, and values. It refers to the shared, and largely learned attributes, of a group of people, and has been found to play a pivotal role in mental health, mental illness and mental health services. Persons of different cultures such as varied ages, religions, racial and ethnic groups, sexual orientation, gender identity, disability, including persons who are deaf and hearing impaired, and those for whom English is not their primary language, have unique characteristics that have been found to cause them to be partially or poorly served or excluded from existing mental health treatment, trainings, and rehabilitation programs, and to receive services that do not reflect their cultural needs and preferences . Treatment plans must be relevant to the consumer’s culture, needs and life experiences. Plans shall be developed by providers who have the knowledge, skills and attitudes necessary to provide effective care for diverse populations.
(3.12.3) Mental health providers must be aware of and have an understanding of the wide-ranging role culture plays in shaping what people bring to the clinical setting and how it shapes treatment professionals. They must also consider cultural factors and influences when working with people of all ethnicities and cultures, as these areas account for variations in the way consumers communicate their symptoms, which ones they choose to report, whether they seek treatment or not, what type of help they may seek, and what types of social support and coping styles are available. Cultural influences have also been found to shape treatment professionals, who share a set of beliefs, norms and values with their colleagues. As a result, clinicians can view symptoms, diagnoses and treatments in ways that diverge from the views of the patients they treat. Considering, and more importantly, demonstrating commitment to understanding and respecting cultural factors and influences are key components of providing culturally competent mental health care.
(3.12.4) Availability of, access to, and the provision of high-quality and meaningful mental health services received by diverse communities are positively affected by an increased level of cultural competence within the mental health care system. Thus, to effectively serve diverse populations, mental health systems need to fully embrace and prioritize cultural competence. Additionally, at a minimum mental health systems must ensure that mental health provider organizations conduct annual cultural competence self-assessments, develop culturally and linguistically competent plans to address areas that would enhance the delivery of culturally and linguistically competent service delivery, incorporate such plans into the organization’s quality improvement programs and strategic plans, establish cultural competence committees or work groups, and support the ongoing development of cultural competence skills among all of its employees and volunteers. Plans should identify key performance indicators that will be closely monitored and enforced.
(3.12.5) Individuals with Limited English Proficiency (LEP) and persons who are deaf and hearing impaired must have equal access to mental health treatment - Culturally competent communication must be available at all times through bilingual providers, certified interpreters, interpreter phone lines, and materials and forms in languages other than English. Mental health provider organizations must provide these services at all points of contact and in a timely manner during all hours of operation. It is not acceptable to use uncertified employees, family members, or friends as substitutes for qualified interpreters.
(3.12.6) Individual and organizational mental health providers and administrators must comply with Section 601 of Title VI of the Civil Rights Act of 1964, which states that no person shall on the ground of race, color, or national origin, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance. Disparities in the availability of, access to and the provision of quality mental health services experienced by individuals from varied cultures is discrimination and cannot be tolerated any longer. Providers and administrators must also be made to comply with Executive Order 13166, which aims to improve access to federally conducted and federally assisted programs and activities for persons who, as a result of national origin, are limited in their English proficiency.
(3.12.7) The federal government, in order to effectively monitor and enforce Title VI of the Civil Rights Act, should mandate compliance agreements that require recipients who operate mental health programs to ensure that they have language access services available to meet the needs of limited English proficient individuals seeking services at all levels of service and at all times of service provision.
(3.12.8) States should take advantage of funding opportunities to provide language access services. For example, the Centers for Medicare & Medicaid Services (CMS) allows states to include language services as an optional service in their Medicaid and State Children’s Health Insurance Programs (SCHIP), in order to reimburse providers directly for the costs of these services for program enrollees.
(3.12.9) NAMI calls for funding, development and implementation of mental health education and awareness campaigns that specifically target diverse communities and for culturally competent prevention and early intervention initiatives.
(3.12.10) NAMI calls for funding, development and implementation of efforts to increase the diversity of the nation’s mental health workforce, including peer support, and the strengthening of cultural competent skills of the nation’s existing mental health service delivery providers.
(3.13.1) People living with serious mental illnesses are at significantly greater risk for other serious medical illnesses such as diabetes, heart disease, cancer, and respiratory diseases, as well as AIDS and Hepatitis C. Recent research indicates that they also have much shorter life spans, as much as twenty-five years less than other Americans. This disparity has increased over time and demands increased attention and funding to promote wellness and preventive awareness among people with serious mental illness, their families, and health care practitioners.
(220.127.116.11) Persons Infected with the HIV Virus and/or Hepatitis C.
NAMI believes that all persons with serious mental illnesses should be encouraged to be tested for HIV and Hepatitis C. NAMI believes that persons who test positive should receive appropriate treatment for both their serious mental illnesses and the Hepatitis C and/or HIV-related illnesses in the least restrictive setting that is safe for all concerned. The results of testing should be shared only on a "need to know" basis and should include families and others who serve as primary caregivers primary caregivers. If families are not primary caregivers, persons with serious mental illnesses should be encouraged to share this information on a voluntary basis.
Persons with serious mental illnesses living in institutional settings have been identified as high risks for these infections. Therefore, NAMI believes that all persons with serious mental illnesses in institutional settings should be offered testing and strongly encouraged to participate in testing.
NAMI urges that education, counseling, and peer support should be made available to the person with a serious mental illness who tests HIV or Hepatitis C positive and, whenever possible, should be offered to their family and staff as well.
(18.104.22.168) Persons Living with Other People Who May Be Infected with the HIV Virus and/or Hepatitis C.
All person living in group housing or residential settings where the health status of other house mates may or may not be known should be taught to practice safe living habits. They should be taught how infectious diseases are transmitted. All housemates should be taught methods to prevent transmission of serious infectious diseases between each other regardless of their relationship.
(3.13.2) Wellness is essential to treatment and recovery. Consumers, family members and providers should promote and encourage wellness. Wellness encompasses mind, body and spirit. Wellness should include nutrition, exercise, rest, dental care, physical exams, and tobacco, drug and alcohol cessation.
(3.13.3) People living with serious mental illness have the same rights and expectations as anyone else to lead healthy lives. Wellness is an important part of the recovery process. Consumers must be empowered to achieve wellness through consumer education and peer support and taking control of their own health and recovery.
(3.13.4) Providers must make wellness a priority and provide access to effective programs and exercise. Useful programs include, but are not limited to, nutrition counseling, cooking classes, exercise programs, yoga, breathing exercises, smoking cessation, drug and alcohol programs, walking trails, exercise equipment at mental health centers and drop in centers, membership in gyms, and appropriate monitoring. Those who provide meals must ensure nutritious choices, including fresh fruits and vegetables. Those who provide treatment must be aware of and actively engaged in supporting wellness; and those who provide supportive environments, including housing and clubhouses, must provide environments that reduce health risks and support overall wellness.
(3.13.5) People with serious mental illnesses must have access to effective prevention and treatment with respect to alcohol, drug and tobacco addiction.
(3.13.6) NAMI calls for better access to dental care. Because of the impact of mental illnesses and the effects of the medications used to treat serious mental illnesses, access to dental care is a particularly important part of wellness for individuals with serious mental illnesses.
(3.13.7) NAMI also calls for better integration of physical and mental healthcare, including sharing relevant health indicators. Mental health care providers need to monitor key physical health indicators and the physical effects of medications. Primary care doctors must follow up on physical issues identified. There must be better infrastructure and funding to process important screening labs and tests for individuals with serious mental illnesses.
(3.13.8) The federal and state governments should provide fiscal incentives for integration of mental, physical and dental health services and funding for successful wellness programs. State programs that seek to reward healthy behaviors must be positive, relevant to individuals with serious mental illness, and not punitive in nature.
(3.13.9) Wellness is an important investment that will lead to decreased public cost, improved resource allocation, and reduction in stigma, thus improving the lives of all those affected by serious mental illnesses.