Arizona's Family Member, Caregiver, and Guardian Bill of Rights

FAMILY MEMBERS AND CAREGIVERS: KNOW WHO YOU ARE

You had dreams. Not one of those dreams involved your loved one being sentenced to a life long battle against a debilitating brain disorder. You raised your child with great hopes for their future. You loved your father, your sister, despite insurmountable and painful challenges - despite having little to no help or support. You suffer in silence and often endure unjust circumstances. You feel invisible. But you are not invisible, you're a hero. You don't need lawmakers to tell you how special you are, because it's already true. But here's the thing, it's pretty nice when they do.

Families of individuals with a serious mental illness face many barriers in accessing treatment for their loved ones. The State of Arizona led the nation in passing the very first Bill of Rights Resolution of its kind entitled, “Recognizing the Rights of Family Members, Caregivers, and Guardians of Individuals with a Serious Mental Illness,” in 2016. With unanimous approval, Arizona’s legislature affirmed the critical role that Caregivers play as well as their inherent rights. It is important to understand, in the best interest of the person with a serious mental illness, what Federal and State law allows regarding communication and access to resources in an effort to prevent further crisis. You can find the full text here.

HIPAA

One of the most frustrating obstacles in accessing care is the way Health Care Providers often interpret the Federal HIPAA Rule. You can find HIPAA Privacy Rule and Sharing Information here.

The experience of many family members has been that Mental Health Care Providers do not try to ascertain medical history when a child turns 18 and are often shut out of critical communication. A psychotic episode can be terrifying for all involved, it is also the most crucial time for information gathering. In 2016, Arizona passed SB1442 into law and makes it clear that Health Care Providers may receive information from family or friends. Our hospitals and other Mental Health Care Providers are in agreement that communication is vital and support the effort of ongoing education. However, because barriers remain, it is important for Family members, Caregivers, and Guardians to understand their rights related to advocacy efforts so that the best possible outcome can be confidently and safely obtained for everyone involved.

While recent studies do show promise for the future with regard to first time episodes of psychosis, many individuals will need ongoing support that may last a lifetime. Arming yourself with knowledge and building a trusted team of support within the community is essential. 

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On ramps to services in Arizona