• National Alliance on Mental Illness: NAMI has workshops for families at nami.org/Support-Education/Mental-Health-Education. NAMI has additional resources from their Child & Adolescent Action Center at nami.org/Your-Journey/Kids-Teens-and-Young-Adults. NAMI has a family guide on how the primary care provider (e.g., pediatrician) can address mental health at nami.org/Support- Education/Publications-Reports/Survey-Reports/NAMI-The-Family-Experience-withPrimary-Care-Physi. Families can find their local NAMI at nami.org/Your-Journey/Family-Members-and-Caregivers.
• Parent-to Parent: Parent-to-Parent is a national network offering support to families. Trained volunteer parents are matched with families of children with the same condition. These services are free to families. Parents can get one-to-one support from another parent "who's been there." Research shows that peer support is highly effective. Families can find their local Parent-to-Parent at p2pusa.org/parents .

NEXT STEPS : STATE AGENCIES AND FINDING HELP

FEDERATION OF FAMILIES FOR CHILDREN’S MENTAL HEALTH

FFCMH chapters can be found at www.ffcmh.org/our-affiliates

NATIONAL ALLIANCE ON MENTAL ILLNESS

Workshops for families nami.org/Support-Education/Mental-Health-Education Child & Adolescent Action Center nami.org/Your-Journey/Kids-Teens-and-Young-Adults Find your local NAMI nami.org/Your-Journey/Family-Members-and-Caregivers

PARENT TO PARENT

Find your local Parent-to-Parent www.p2pusa.org/parents

SPAN PARENT ADVOCACY NETWORK www.spanadvocacy.org

POSITIVE BEHAVIORAL INTERVENTIONS AND SUPPORTS

Use of Positive Behavioral Interventions and Supports Best practices www.pbis.org/topics/restraintseclusion

ADVOCACY/SELF-ADVOCACY ISSUES

There are some issues regarding mental health that may affect children and also later as they become self-advocates. These can include minor consent, making medical decisions, parent's rights, restraints, waiting in emergency rooms, and dual diagnosis of mental illness and developmental disability. For self-advocates, the Centers for Independent Living help with life skills to maximize independence and are found at ilru.org/projects/cil-net/cil-center-and- association-directory.

• Minor Consent: In some states, under the age of 18 children have the right to have input into their treatment, including hospitalization and medication. In NJ for example, the PerformCare family guide states "Where a youth at least 14 years of age or older is receiving services provided through CSOC, written authorization by the youth is required to release information to a parent/legal guardian or third party." FEDERATION OF FAMILIES FOR CHILDREN'S MENTAL HEALTH FFCMH chapters can be found at ffcmh.org/our-affiliates
• Alternatives to Guardianship: Most children with mental health issues do not need guardianship when they become adults as most of the time they are competent decision-makers or have recovered. However, some children will have ongoing challenges. A good option could be a durable power of attorney, which is revocable at any time by the young adult, but may be useful during crisis when they need support in decision-making and allows providers to communicate with the person holding the durable power of attorney. Consult your attorney for information on the various options.
• Parental Rights: Families do NOT have to give up their custodial rights in order for their child to get treatment. If families give up their parental rights, the child becomes a ward of the state and the family has no say in what happens or where they are. NATIONAL ALLIANCE ON MENTAL ILLNESS Workshops for families nami.org/Support-Education/Mental-Health-Education Child & Adolescent Action Center nami.org/Your-Journey/Kids-Teens-and-Young-Adults Find your local NAMI nami.org/Your-Journey/Family-Members-and-Caregivers
• Restraints: Parents do NOT have to sign any documents, including IEPs, which allow the use of aversive interventions, restraints, or seclusion, in order for their child to get placement or services. The inappropriate use of restraints, including chemical restraints, is experienced as trauma. Best practices are the use of Positive Behavioral Interventions and Supports (see pbis.org). You can access "What Parents Should Know About the Use of Restraint and Seclusion" at spanadvocacy.org/content/what-parents-should-know-about-use-restraint-and- seclusion. PARENT TO PARENT Find your local Parent-to-Parent p2pusa.org/parents
• Shortage of "beds:" Sometimes even in a crisis, there isn't an immediate place available for hospitalization. This means that some children end up waiting in the hospital emergency room. There is a limit of 24 hours wait time for children. Some hospitals have also now developed pediatric emergency rooms. SPAN PARENT ADVOCACY NETWORK spanadvocacy.org
• Dual Diagnosis: At times it may be difficult to determine if the behavior of a child with a dual diagnosis is due to the developmental disability. The key factor in deciding is if it appears to be a mental health crisis. It may be even harder for children with a dual diagnosis to find a hospital bed. However, with the recent move of children with developmental disabilities to the Department of Children and Families, which also serves children with mental health issues, this should become easier over time.

If families are having problems with advocacy issues, they can POSITIVE BEHAVIORAL INTERVENTIONS AND SUPPORTS Use of Positive Behavioral Interventions and Supports Best practices pbis.org/topics/restraintseclusion contact the Federation of Families for Children's Mental Health at ffcmh.org/chapters, the National Alliance on Mental Illness at naminj.org/support/affiliates, or their Parent Training and Information Center at parentcenterhub.org/find-your-center. •