Supported Living Agency

Jamie is a 35-year-old female with autism and an intellectual disability. She often uses assistive
technology on an iPad to communicate with others. Jamie lives in a supported living agency
with other adults with disabilities. Her mother is elderly, so Jamie relies primarily on the
advocacy and support services at her supported living agency. When her mom comes to visit
one week, she notices a change in Jamie’s behavior. Jamie is typically very happy and
interested in being active. Her mother observes unexplained violent episodes, disinterest
interest in eating her favorite foods and it seems like she may have more trouble balancing
lately. Jamie’s mother requests she be taken to the doctor for a check-up.
A workforce shortage to staff supported living agencies means there has been a high turnover
rate for care providers of people with ID and often caregivers are stretched beyond capacity.
Jamie’s newly assigned caregiver only sees Jamie on Tuesday’s and Thursday’s during the
afternoons while another caregiver sees her in the mornings and nights. Reluctantly, because of
her novel experience, Jamie’s caregiver takes her to the doctor. Jamie becomes anxious when
required to wait in the lobby while her caregiver completes a stack of required paperwork. The
lobby is noisy, the door chime keeps going off, and there are loud phone conversations
happening at the front desk. Since her caregiver is new, she doesn’t know how to help Jamie
feel less anxious and there are no quiet spaces available in the facility for them to wait. In
addition, the caregiver becomes frustrated because she is being called back to the agency to
tend to another client and doesn’t have all the required medical information to accurately
complete the paperwork. When it comes time for the appointment, the physician speaks only to
Jamie’s caregiver and rushes through the appointment because it is only scheduled to be 30
minutes long. At the end of the appointment, Jamie’s physician prescribes her antipsychotics to
control the violent episodes.

How would you address the facility experience from your profession’s perspective?

• What questions would you ask the patient to best care for and address their needs in this scenario?
• What additional information do you need to make informed decisions?
• What are possible avenues to obtain the necessary information to enable you to provide best-practice care in this case? (e.g., Patient, family member, caregiver, EHR, managed care organization)
• Practice how you would go about asking each member of the patient’s support group for additional information. Start with the patient themselves.
• What challenges would you anticipate and how might you address those challenges from the beginning?