What is Quality of Life and Quality of Care?

The telephone rings. On the other end of the call is a waiver service provider who has just walked into an adult client’s home filled with feces, urine, vermin, flies and standing water. On another occasion, a home video is provided by a member of a client’s individualized support team. It shows the young client having a seizure while his waiver service provider, apparently unconcerned, remains seated on the couch casually using a cell phone.

These are just two examples of the quality of life and quality of care issues CICOA case managers face while assisting clients with intellectual/developmental disabilities supported by Bureau of Developmental Disabilities Services (BDDS) waivers. An ongoing challenge of the case manager’s job is to create a care plan that supports the client’s vision of a good life while allowing them to live, love, work, play and participate in their community.    

Defining Quality of Life and Quality of Care

It’s important to understand at the outset what we mean by quality of life and quality of care. 

Quality of life is a multidimensional concept that includes subjective evaluations of behavioral competence, psychological wellbeing, environmental quality and perceived quality of life.

Quality of care subjectively and objectively evaluates the extent to which health care services provided to individuals and patient populations improve desirable health outcomes. Studies show that when health interventions are properly tailored to the client’s needs, quality of care can have a significant impact on quality of life. 

How a case manager responds to Quality of Care issues

Going back to our first scenario that began with a phone call, let’s explore the case manager’s response. First, they requested that the provider contact Adult Protective Services, file an incident report through the state of Indiana, and contact the local health department. The case manager then followed up to ensure compliance and advocated on behalf of the client with APS and the client’s primary care physician. The case manager arranged for two home-delivered meals daily, Boost food supplements and incontinence supplies. The family is now considering community integration habilitation and residential habilitation service options to ensure the client’s ongoing safety and welfare.

Moving the client closer to the desired outcome was not a simple journey. Along the way, the case manager encountered conflicting assessments of the home’s condition and difficulty getting the conditions improved. There were logistical problems in meal delivery within the client’s geographic area and resistance from the family in receiving hands-on services.

In the second scenario involving the video, since the client is a child, the case manager filed a report with Child Protective Services, an incident report with the state, and contacted the provider. After the offending worker was suspended, the client still wasn’t receiving help. The case manager reached out to applied behavioral analysis providers seeking immediate assistance to ensure the client’s safety and contacted the client’s physician to request an assessment for occupational therapy and speech and language therapy, as the client is non-verbal and unable to advocate for themselves. The case manager coordinated care with all providers, and a new provider is now in place. The client has shown signs of improvement, is slowly taking food by mouth and speaking again in short phrases.   

Obstacles with this case included finding an in-home nurse to assist with the client’s gastrostomy tube feedings. Both the care manager and client’s mother were frustrated by the lack of response from Child Protective Services. Finally, the mother—despite feeling burned out and alone—refused a short-respite stay for the child at a pediatric skilled-nursing facility for fear the child would be taken away.  

Through the case manager’s persistence, the individual who abused the client was disciplined and is no longer allowed to provide care, the agency that hired the person was removed from the case, and the presence of the new provider has provided welcome stability.   

As these scenarios demonstrate, client and caregiver needs vary by individual and from day to day. By providing care in a safe, effective, timely, efficient, equitable, and person-centered manner, case managers serve as the eyes, ears and voices that support quality of life and quality of care for clients and caregivers alike. 

Jennifer Kugler

Jennifer became a case manager for CICOA’s Intellectual/Developmental Disability (I/DD) services in January 2020 and previously served as a Flourish care manager. She holds bachelor of arts and bachelor of science degrees from Butler University and an accelerated bachelor of science in nursing from Marian University. Jen volunteers as a Girl Scout leader for Fishers Service Unit, Troop 1544. Previously, she served as a full-time caregiver for her mother, grandmother and grandfather prior to their passing, and continues to support a sister with I/DD. Alongside a co-leader, Jen hosts the annual Fishers “My Guy and I” dance as a tribute to her mother. Jen enjoys travel, anything Disney, camping, reading and exercising. She describes her life mission as helping those around her to live their best, most fulfilling life.