4. Services and Supports for Children, Adolescents, Young Adults and Families
4.1 Comprehensive Array of Services and Supports
A comprehensive array of treatment, services and supports that address prevention, early intervention, recovery, and support should be available to children, adolescents and young adults living with mental illnesses and their families. These services should be available through publicly and privately funded service systems. They should promote resiliency and recovery and include evidence and research based interventions. There must be effective system coordination and collaboration between systems serving children, youth, young adults and their family.
Services, supports and appropriate accommodations should always be timely, easily accessible, and provided in the least restrictive environment.
They should include, but not be limited to:
- Services provided in the home and community;
- Intensive case management;
- Crisis intervention services;
- School-based services;
- Wrap-around services;
- Respite care;
- Therapeutic mentoring and recreation programs;
- Family education and support programs;
- Vocational and rehabilitative services; and
- Inpatient and residential treatment.
Peer support services should be available at all times and at all levels of care.
States and communities should invest in home and community-based services as the primary treatment modality. Children should not remain in inpatient and residential treatment beyond the time of planned therapeutic benefit.
4.2 First Episode Psychosis Services and Supports
Youth and young adults experiencing a first episode of psychosis must be identified early and provided with research-based coordinated specialty care (CSC). The National Institute of Mental Health (NIMH) funded a multi-site study showing that providing CSC in First Episode Psychosis programs produces positive outcomes. The components of CSC programs provide the services and supports that youth and young adults experiencing a first episode of psychosis need to improve the quality of their lives. CSC programs recognize the valuable role families play in supporting their loved ones in achieving positive treatment outcomes.
The service and supports provided in first episode psychosis CSC programs include the following:
- Family Education and support
- Case Management
- Recovery-oriented psychotherapy
- Low does medication and medication management
- Supported education and supported employment
- Coordination with primary care services
- Peer support services
These services and supports are delivered through a team-based approach using person-centered care and shared decision making. Every youth and young adult experiencing a first episode of psychosis should have immediate access to first episode psychosis CSC programs. NAMI urges states and communities across the country to expand these programs so that youth and young adults experiencing first episode psychosis can access effective services and supports that allow them to move on with their lives.
4.3 School and Campus Based Services
Schools must protect the confidentiality of all students’ mental health related information.
All schools, including institutions of higher education, should understand and follow federal and state privacy laws for both health information and education information and their responsibility for appropriately addressing the needs of students with mental illnesses and psychiatric emergencies under those laws.
(4.3.1) Elementary, Middle and High Schools
Undiagnosed, untreated, and inadequately treated mental illnesses significantly interfere with a student’s ability to learn, to grow, and to develop.
Because children spend much of their productive time in school and services can be integrated into their regular daily routine, NAMI believes that both public and private elementary, middle and high schools should provide and/or facilitate and sustain provision of appropriate mental health services, supports, and appropriate accommodations.
In order to assure that coordination of services can be supported and maintained and that families have adequate resources to address their needs, schools should maintain a close connection to the community mental health and primary health care systems. The caseload of school-based mental health providers should be capped at a level that ensures that they can adequately address the needs of students and their families.
School systems should be adequately funded to provide special education services and to meet the academic and functional needs of all students with brain disorders. This will require access to both public and private funding for mental health services and supports. All students should receive an education in the least restrictive setting and in general education classrooms unless their needs can only be met, and are better addressed, in a separate or alternative classroom.
The bullying that currently exists in far too many of our nation’s schools disproportionately hurts students with disabilities, especially those living with mental illnesses. All schools should develop effective anti-bullying policies so that students with mental illnesses are not targeted by bullies or labeled as bullies as a result of symptoms of their mental illness.
(4.3.2) College and University-Based Services and Supports
NAMI believes that colleges and universities should provide a full array of services, supports and appropriate accommodations for both campus-based and commuting students. The array should include mental health evaluations, outpatient treatment, peer support specialists, integrated services for co-occurring brain and substance use disorders, on-campus support and information sources and referrals, a link to the community mental health and crisis intervention service systems, and 24 hour urgent care available daily. In no case should a student be penalized by dismissal or probation or be denied the right to enroll in a course of study solely because of a mental illness.
Support, education, and advocacy programs should be available and accessible for students and their families on college and university campuses. Colleges and universities should include comprehensive information about mental health treatment, services, and supports on their web sites and should notify students and their families about the availability of this information. They should also share information about the early warning signs of mental illnesses and develop effective suicide prevention plans responsive to the high incidence of suicide in young adults aged 15 to 24.
If a student experiences a psychiatric crisis, the college or university should immediately contact the student’s family about the crisis. Colleges and universities should never use the existence of a psychiatric crisis as grounds to ask a student to leave the school. Instead, schools should develop appropriate accommodations and supports that appropriately address the needs of students experiencing a psychiatric crisis or recovering from a psychiatric crisis.
4.4 College and University-Based Services and Supports
(4.4.1) NAMI advocates that colleges and universities provide an effective and accessible array of mental health services, supports and appropriate accommodations for both residential and commuting students. Mental health services and supports should be integrated with other health services in order to improve overall wellness and prevent stigma that may be associated with separate mental health services and facilities.
(4.4.2) Mental health services for college and university students should include, but not be limited to, the following:
- Screening and evaluation;
- Walk-in health facilities;
- Individual and group therapy and counseling;
- Peer support specialists and peer run support groups;
- Integrated services for mental illnesses and substance abuse disorders;
- Easily accessible information about mental illnesses, including referral to off-campus treatment, services and support;
- Convenient links to community mental health services, including crisis intervention;
- Widely publicized availability of a 24-hour, seven day a week hot-line connected with urgent care;
- Access to psychiatric care whenever in the best interests of the student and medication management; and
- Training for campus law enforcement and other first responders, such as CIT and other approaches.
(4.4.3) Students should not incur financial loss, loss of housing or other available student services, or dismissal, probation or denial of enrollment in a course of study, class or activity solely because of mental illness. Reasonable and individually appropriate accommodations must be made available to students with mental illnesses, including during periods of crisis and recovery from crisis.
(4.4.4) Support, education and advocacy programs should be available and accessible to students on college and university campuses. Colleges and universities should welcome the organization and operation of Mental Health First Aid, NAMI on Campus Clubs and NAMI peer and family support programs, other student led peer activities, and programs that raise awareness about mental illnesses, help students to manage stress and avoid isolation, maintain overall wellness, support students living with mental illnesses and eliminate all forms of stigma that may be barriers to students seeking information, treatment and access to services. Such programs should include family involvement for students who are legal dependents, married, civil partners or who otherwise seek family involvement.
(4.4.5) Colleges and universities need to include accurate and reliable information about mental illnesses and mental health treatment, services and supports on campus-hosted websites and, with effective privacy warnings, in other campus-hosted social media. Such information should include advice on prevention, awareness of the early warning signs of mental illnesses and how students may seek help for themselves and others. Campus-sponsored disability resource centers, campus administrators responsible for compliance with accessibility requirements for people with disabilities, and campus sponsored student health services must be staffed by people trained to understand mental illnesses, appropriate accommodations and treatment. Information about mental health and mental health services, supports and accommodations should be made available during orientation for new students and their families.
(4.4.6) Colleges and universities should employ mental health professionals who are trained to provide effective services and supports that include meeting the often diverse needs of students in terms of age, family status, gender, race, ethnicity, language, sexual orientation and status as veterans. Such training must include awareness of best practices and emerging practices as well as the importance of family and peers to recovery and resilience for students and for young adults in crisis or living with mental illnesses.
(4.4.7) Colleges and universities need to develop and publicize institutional policies and practices that protect confidentiality and privacy related to mental health treatment and services. Such policies and practices need to be publicized, understandable and followed. Consistent with applicable federal and state law, students and families must be clearly informed about the circumstances in which colleges and universities may contact family members or mental health caregivers in connection with emergencies or other urgent circumstances involving the health and safety of a student or others. Students who may be experiencing the onset of a mental illness or living with mental illness should be counseled about the benefits of consenting to sharing information with their families and mental health caregivers.
(4.4.8) Effective suicide prevention plans and practices must be in place at colleges and universities in order to respond to the high incidence of suicide in young adults under 24 years of age.
(4.4.9) Federal, State and private funding should be better coordinated and integrated in order to provide services and supports for college and university students with mental health issues.
4.5 Restraints and Seclusion in Schools
The use of restraints and seclusion in schools--causing trauma, injury and death in far too many cases--disproportionately impacts students with disabilities, most often students with mental illness.
Restraints refer to the forced restriction or immobilization of a child’s body or parts of the body to control behavior. Escorting and the immediate physical separation of children in conflict are not considered a restraint. Seclusion is involuntary confinement in a room, box, structure or space from which a child cannot leave. Seclusion does not include requiring a child to leave an activity, to move to a quieter or less stimulating location, or to be in a comfortable unlocked room designed to reduce stimulation or anxiety and from which the child could come and go.
NAMI believes that restraints and seclusion should not be used in our nation’s schools except in emergency circumstances as described below. NAMI calls for the enactment of federal and state legislation and the adoption of regulations to address the following issues related to the use of restraints and seclusion in our nation’s schools:
(4.5.1) Authorize the use of federal Title I education funds and provide additional federal funding to implement Positive Behavioral Supports (PBS) and require as a condition for funding that schools implement positive, evidence-based plans and procedures for all students who exhibit behaviors that interfere with learning or that may threaten to place themselves or others in imminent danger;
(4.5.2) Develop federal standards and provide additional federal funding for training in restraints use, prevention and reduction and require all staff to be trained within the first month of each school year on the school’s emergency and crisis prevention procedures, de-escalation to help avoid crises, and debriefing procedures. Require that school staff receive training and demonstrate competence in the following areas: the early warning signs of mental illness and effective crisis intervention for students with mental illnesses; positive behavioral supports and interventions; communicative intent of behaviors; relationship building; alternatives to restrictive procedures and identifying events and environmental factors that may escalate behavior; de-escalation methods; obtaining emergency medical assistance; the physiological and psychological impact of restraints and seclusion; and the skills that students need to better regulate and manage their behaviors;
(4.5.3) Prohibit the use of restraints except in emergency cases defined as those involving an imminent risk of danger to the child or adolescent or others and no other safe, effective intervention is possible. Restraints may only be used by staff who have received intensive training and with rigorous supervision and must cease as soon as the emergency ends. Prohibit the use of any form of restraint that interferes with breathing and/or the ability of students to speak or otherwise communicate, e.g., prone restraints (with the student face down on his or her stomach), supine restraints (with the student face up on the back), or any maneuver that places pressure or weight on the chest, lungs, sternum, diaphragm, back, neck, or throat.
(4.5.4) Prohibit the use of seclusion except in emergency cases defined as when a child must be physically separated from others because of an imminent risk of danger to an individual or others and when it has been documented that no other safe, effective intervention is possible. The child must be released from seclusion the moment the emergency ends. The room used for this purpose must be designed to provide a safe and non-threatening environment. The door to the room may not be locked, but it may be temporarily held closed with a device that requires a staff person to hold it in place and to see and hear the child at all times. Staff must be able to visually and audibly monitor the child at all times. Occasional checks are not acceptable. If a child is secluded for more than 15 minutes, either the school principal or an administrator responsible for the school in the absence of the school principal, must personally observe the child and note any reason for continued seclusion in a log maintained for that purpose. The school principal or administrator responsible for the school in the absence of the school principal must renew these observations every 15 minutes until the child is released from seclusion; and immediately attempt to notify the family of any continuous seclusion exceeding 15 minutes;
(4.5.5) Require that whenever there are multiple applications of restraints and/or seclusion, or whenever recurring use of restraints and/or seclusion is likely, a meeting must be promptly convened with the student’s teacher, the school principal, the student’s family, a mental health provider, and other relevant school staff to identify the circumstances leading to the use of restraints or seclusion and to discuss the appropriateness of a Section 504 plan or an Individual Education Program (IEP);
(4.5.6) Prohibit disciplinary techniques or behavior interventions that compromise the health and safety of students and others; cause physical or psychological injury, harm or are demeaning; or deprive students of basic human necessities or rights - including food, hydration and bathroom visits;
(4.5.7) Provide that restraints and seclusion are not to be used as a means of punishment or as a response to property destruction, disruption of school order, refusal to comply with school rules or directives, or in response to verbal threats that do not constitute an imminent danger to self or others;
(4.5.8) Prohibit the inclusion of restraints and seclusion in a student’s individual education plan (IEP) or as part of a student’s behavior intervention plan (BIP);
(4.5.9) Provide all students with a range of programs to prevent behavioral emergencies, including mental health services, anti-bullying programs, social problem-solving programs, positive skills development, and related services. In the event of an emergency and whether or not restraints or seclusion were employed, all students should also be offered relevant services including but not limited to mental health services, trauma informed care, counseling and related services;
(4.5.10) Require that parents and caregivers be informed immediately of all emergency interventions and incidents of restraints or seclusion occurring that day that involve their child. This is necessary in order to ensure that parents and caregivers can exercise their right to meaningful participation in the development of safe and positive interventions and supports for their child as well as being assured that action will be taken immediately to help avoid similar events in the future. If the school is unable to immediately reach parents or caregivers to inform them about the emergency use of restraints or seclusion, then the school must document attempts made to reach them;
(4.5.11) Require schools to provide clear procedures for school staff to report perceived abuse with respect to restraint and seclusion and ensure that parents and caregivers are aware of all available legal remedies, including the right to pursue legal action;
(4.5.12) Require schools, using uniform reporting standards, to collect data on the emergency use of restraints and seclusion in schools, including the identity of all school staff involved in these incidents. These data must be collected by State Education Agencies and should also include the number of times restraints and seclusion are used, the duration of usage, the emergency circumstances that led to their use, the ages of the students, injuries to students (as reported by school staff and parents), the identity of all school staff involved in the use of restraints and seclusion in schools and fatalities. Incident reports summarizing these data should be provided to parents, caregivers and providers. These data should be available to the public and used by the U.S. Department of Education to target action to reduce restraints and seclusion. This action should include training, technical assistance, and corrective action related to any inappropriate use of restraints and seclusion.
(4.5.13) Require that each state annually develop a publicly available report on efforts targeting the elimination of the unnecessary use of restraints and the elimination of seclusion and efforts to create a more positive school climate and culture; and
(4.5.14) Intervention by law enforcement personnel is not acceptable as an alternative to the use of restraints and/or seclusion.
4.6 Transition Age Services and Supports
NAMI urges the development of effective services that bridge the transition from child to adult for youth living with mental illnesses. These services should be available in our nation’s schools and they must be provided by appropriate community agencies such as post secondary institutions, vocational rehabilitation agencies, housing agencies and other agencies, as appropriate. Planning for appropriate transition services should begin, at a minimum, by age 14 and should continue as adolescents progress into adulthood. Barriers to a smooth transition from adolescence to adulthood or to the delivery of effective transition services, such as the imposition of financial criteria or program eligibility requirements, must be eliminated.
4.7 Educational Programs
(4.7.1) NAMI believes that a transformed system of care must be focused on resiliency (increasing protective factors in a child’s life, helping to ensure early identification and intervention, and a child’s ability to bounce back from adversity) and recovery and driven by consumers and families. A transformed system must also guarantee the widespread availability of free mental health educational programs for children and adults living with mental illnesses and families at every stage of the life cycle, and must empower them to be teachers in the education and training of all mental health providers.
(4.7.2) Peer-designed and peer-directed educational programs, at every stage of the life cycle, must be valued and promoted as an integral part of the service system. Specific government grants must be made available to support the development and administration of peer-directed programs. In addition, system resources must be made available to develop and evaluate peer educational programs and to establish an evidence base comparable to the rigorous scientific studies conducted by fully funded system-based programs.
4.8 Training and Qualifications for Providers
NAMI calls for all child-serving professionals to receive training that will help them better understand early onset mental illnesses and how to communicate effectively with families about these illnesses. Healthcare providers treating children and adolescents with mental illnesses should receive as much training as necessary to ensure that they can and will provide evidence and research based treatments and service interventions.
4.9 Integrated Health and Mental Health Care
NAMI calls on policymakers, providers and public and private funders of healthcare services to place a high priority on addressing the critical need for integration of physical and mental health care. The causes of health and disease are a product of the interplay or interaction between biological, psychological, and socio-cultural factors. This is true for all health and illness, including mental health and mental illness.
Primary care and mental health care providers working with families, youth and young adults living with mental illnesses, should make a commitment to ensure that adequate time, training, and resources necessary to provide appropriate care for children, youth and adults living with mental illnesses are available and accessible when and where they are needed. They can accomplish this through collaborative practice arrangements, interagency system coordination, and interdisciplinary teamwork. The integration of physical and mental health care produces better treatment outcomes and overall better health outcomes for children, youth and adults living with mental illnesses.
NAMI believes that it is critically important that primary care providers be trained and qualified to recognize the early warning signs of mental illnesses, and to screen and evaluate children for mental health treatment needs. Because children and families often visit primary care providers as part of well-child clinical care, this is an important opportunity to identify a child’s need for mental health related treatment and services, at the earliest possible time.
4.10 Family Driven and Youth Guided Services
All services and supports provided to children living with mental illnesses and their families should be youth guided and family driven, with the needs of the child and family dictating the types and mix of services provided. (see section 3.6 on Family Involvement in Treatment)