IMPACT OF PROPOSED CHOICES FOR CARE CUTS ON RECIPIENTS Source: Central Vermont Council on Aging Case Manager CFC Story #3: Chris’s Story Chris, (not his real name), was a dean’s list student at UVM, musician, talented skier and and a compassionate helper in service to others. He was just the right candidate for medical school and the pride and joy of his parents, who live in Northfield, Vermont. Everything in Chris’ life seemed to glow with promise until the day he became dizzy in the dorm shower room, fell and was unable to get up. Rushed to the hospital, hours had passed by before his parents would arrive to the Intensive Care Unit. The wait by Chris’ parents to learn what had made him fall was unnerving, full of concern and exhausting. When the Chris’ attending physician arrived and said he was from the Oncology Unit, both Karen and Bill, Chris’ parents, grabbed one another. “Your son is resting comfortably and is in no immediate harm. However, we have discovered that Chris does have lesions on his brain and we suspect his has Melanoma, skin cancer and he may have had this for some time now”. That afternoon Chris and his parents began their survival school education; painful lessons experiences that test families’ ability to endure the worst difficulties life has to offer. Chris would soon become completely disabled at the age of 20 and was forced to drop out of UVM and to return to his parent’s home. Chris’ parents scrambled to set up their home to accommodate in-home medical care services from Central VT Home Health with RN’s, Personal Care Attendants, Occupational Therapists and other Companion Visitors who stayed with Chris when his parents had to leave the home to maintain their jobs or risk losing earnings now needed to save Chris’ life. Soon after Chris’ in-home care began, a Case Manager for the Central VT Council on Aging visited Chris and his parents to provide information and resource connections to services that assist Chris to remain in his home. It was at this time that Chris was provided assistance with applying for the Choices for Care Program through and after many health assessment visits and providing much documentation, Chris was eventually approved for the CFC program and funding for his in-home care services. Eventually, Chris’ parents exhausted all of their family medical leave benefits and Chris began to spend more and more time alone during the day either in bed or on the couch between visits from his home health professionals. He was unable to move without the assistance of others. Companion Services time, part of Chris CFC Service Plan, was critical to helping keep Chris’ spirits up and to ward off depression, inactivity and the resultant loss of muscle tone which had been gradually slipping
away due to right side deterioration. Chris’s mother depended on the Companion Visitors, friends of Chris’ from college, to breathe life into his new, medical services world, as he grappled with his rapidly dissolving physical functioning. It was the Companion Visitors who got Chris outside, into the car and down into town for medications, medical supplies, an ice cream cone and essential reconnections to his community and some semblance of a renewed quality of life. As fall approached, Chris’ parents became stressed and were hard pressed to find replacement Companion Visitors because Chris’ friends from town were again college bound and not available to help for most of the year. Neighbors and relatives were sympathetic, but would not step forward to spend the necessary hours with Chris that his CFC Companion Visitors provided. They all had families, jobs and very busy lives of their own and so helpers were extremely hard to find and very difficult to depend on given the challenging nature of visiting and working with someone with Chris’ unique medical condition. The job takes a very special set of skills. In the first year of Chris’ Choices for Care plan, the 720 Companion Service Hours were exhausted and Chris mother became desperate to engage additional in-home helpers as her extensive time away from her job was affecting her performance. Faced with the risk of inconsistent Companion Services time and the loss of the courageous efforts of Chris’ Companion Visitors, both of Chris’ parents did become dangerously close to losing not only their son, but their family business and professional careers, as well. Both parents had become completely exhausted and together sought counseling services to address the stresses of the continuous battle to keep their still young son out of a nursing home. Services and supports from Chris’ team of caregivers together with administrative, social work support, case management and resource development work through the Central VT Council on Aging enabled Chris to get the help he needed to remain in his home semiindependently, with great dignity and determination in his battle with cancer. Chris died in 2010 with his loving family by his side and had it not been for his dedicated and dependable Companion Services crew, the overall in-home care program would not have been possible or sustainable. Throughout the three years that Chris received his Choices for Care services at home, his care was provided professionally, respectfully, and at half the daily/annual rate of nursing home care. Reducing Companion Services time, as part of the overall Choices for Care in-home services initiative, would be like asking individuals/patients with chronic breathing issues and doctor prescribed oxygen to turn off their breathing nebulizers 50% of the time. The consequences of these proposed cuts would be just as disastrous to the lives of Vermonter’s who desperately need their Choices for Care Companion Services hours .