Voices from Inside the Studio: The Right to Confidentiality and Freedom from Restraint+Seclusion

August 19, 2019 By christea-parent

For August we are focusing on the right to confidentiality, as well as freedom from restraint and seclusion.

Rights and responsibilities around the sharing of personal information is a hot topic these days – it’s a concern that is shared among many!  We all want our personal, private business to be secure, and to only be shared with trusted parties.

Our rights statement on confidentiality reads as follows: You can inspect your records if you wish.  You can ask for a report about how you are doing.  With the written permission of yourself or your guardian, you can ask that reports be shared with family, friends, or advocates.  Staff persons cannot talk about you with persons outside of Arts of Life, Inc. or send any reports without the written permission of yourself or your guardian.

In laymen’s terms: our business is our own, and no one can share our business without permission.  Arts of Life employees, volunteers, and artists are all committed to not sharing personal information about each other without expressed consent.

In artists’ planning meetings, each artist chooses the people and agencies with whom we share their information.  “My family members, like my two sisters and my brother” are the folks David Krueger wants updated on his progress. “Tell them I’m a full time artist, I do music… I’m doing fine in the studio.” 

Dave has an appreciation for the way we handle his information.  “It gives me a lift… it makes me feel more comfortable.  That’s how I feel.”

Pictured: David Krueger smiles at the camera with a hotdog and lemonade outside at the Chicago Studio Sale

We also discussed freedom from restraint and seclusion.  Our rights statement reads as follows: Arts of Life, Inc. staff persons cannot use mechanical devices or safety devices that might restrict your movement without your permission.  No one can lock you in a room or not allow you to leave a room as a punishment.

Restraint and seclusion have an unfortunate and far too prevalent history within the disability community.  While some restraints are generally agreed upon as necessary (such as wheelchairs with seatbelts), and some are used in an emergency situation by trained professionals (such as an EMT), many disability agencies and support persons have been over-reliant on them as a means of behavior modification; they have used emotionally and physically intense intervention methods too quickly, have used them as a form of punishment, or have implemented  them without proper training.

Being restrained or locked in a room by one’s self can be an extremely traumatic experience, and often serves as a harmful band-aid for a wound that runs deep.  This infographic from a nonviolent intervention agency, while mostly focusing on children in schools, gives a run down of the prevalence and effects of these practices: https://www.ukerusystems.com/infographic-a-case-for-eliminating-restraint-seclusion/

Infographic on restraints and seclusion from ukerusystems.com

We believe that what others call “challenging behaviors” is communication on the part of the individual in crisis, and the best way to reduce crisis incidents is to meet the individual’s needs: what is causing this person discomfort?  How can we alleviate that discomfort?  This is a restorative approach that reduces the possibility of trauma and can alleviate challenging behaviors long-term.

At Arts of Life, when a person is experiencing crisis, our artists know it’s important to give that person space, and their first line of approach is leaving the room: this gets them out of harm’s way and provides the individual with more privacy and space.  We work together as a community when someone is in crisis, knowing that we all experience crisis from time to time, and that everyone deserves patience even on their bad days.