Request for Increase in Attendant Care Hours
Lavana Flowers is 100% bedridden with a diagnosis of severe ME/CFS and metastasized cancer. She is in hospice care through Hospice of Peony. Lavana is requires full care in all ADLs and IADLs. She is frequently immobile in bed and requires care with body repositioning and assistance in all areas. Due to the complex nature of her medical conditions, she also requires specialized care activities in all ADLs.
Lavana is requesting paid attendant care hours of 85 hours per week.
Lavana is 100% bedridden. She is frequently immobile within bed, experiencing pain from any movement. She requires full assistance with bedpan, dressing, bathing in bed, and hygiene in bed. She is experiencing incontinence and at risk for pressure sores due to immobility.
Metastatic cancer with severe bone destruction and severe malnutrition. Ongoing chronic diagnosis of severe Myalgic Encephalomyelitis, an acquired neurological disease including a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions, a reduction in functioning and a severe worsening of symptoms after even minimal exertion. Medical records note Pathologic right hip fracture, intractable cancer pain, Thoracic spine lytic lesions, atypical chest pain, and supraventricular tachycardia.
Lavana is experiencing severe pain due to immobility, structural strain, intractable cancer pain and Extensive bone destruction. Continues to experience symptoms of severe ME/CFS neuroimmune disorder, including: Severe, incapacitating weakness and fatigue. Postexertional malaise,headaches, spatial instability, severe sensitivity to sound/hyperacusis, gastrointestinal symptoms including nausea and abdominal pain, severe muscle fatiguability, and poor coordination.
Attendant Care Hours Required
Lavana requires approval for 85 hours per week to meet her care needs in her home.
Lavana intends to remain in her home for the duration of her hospice. Without 85 hours per week in Medicaid attendant hours, Lavana is at immediate risk of an unnecessary placement in a facility. Due to her complex medical and care needs, a facility placement would be inappropriate medically, and risk seriously worsening her condition.
Other supports available
Lavana’s Informal unpaid caregiver is onsite a limited amount and unavailable to provide care, due to other obligations.
Lavana receives nursing care through Hospice of the Peony. She has a nurse who visits one hour per week through this service. The nurse is also available by phone or email to assist with medical care coordination. Lavana is not requesting nursing hours through Medicaid ccc+.
Hospice of Peony does not provide comprehensive personal care support services.
With this approval of 85 hours per week in attendant care services, Lavana is able to make arrangements to remain in her home and receive safe, adequate care.
Facility Placement Options
Lavana’s doctor has stated that facility or nursing home placement is contraindicated for Lavana’s condition. A facility placement would place her at great risk for worsening of condition. She must remain in her home in order to have her care needs safely met.
Lavana is requesting community-based services in the form of CCC+ medicaid waiver attendant care hours, which will allow her to remain in her home. This request is made in accordance with the the Olmstead act, which finds that institutional placement of persons who can handle and benefit from community settings is an unjustified segregation of persons with disabilities and constitutes discrimination in violation of title II of the Americans with Disabilities Act.
Lavana Flowers – Complete Care Plan
Complete assistance: ambulation
Lavana is 100% bedridden and unable to ambulate within the home. She is unable to leave her bed to use a bedside commode. All care tasks must be performed in bed. She requires assistance with any movement tasks within the bed. Attendants must spend a great deal of additional time handing her things and bringing her things as she has limited range of motion.
Special ambulation care tasks: musculoskeletal
Lavana’s condition is worsened by immobility which place is strain on her skeletal system, and contributes to skin breakdown. She requires Passive Movement and stretching of limbs to decrease pain and atrophy. Lavana requires rubbing and gentle movement of limbs which she is unable to do unassisted.
BATHING & HYGIENE
Complete assistance in bathing
Lavana requires complete assistance in bathing, including all areas of dressing and undressing, sponge baths in bed, preparing bathing supplies, washing hair, drying body, etc. Lavana is bedridden and unable to perform bathing tasks due to profound weakness, fatigue, and pain.
Complete assistance in hygiene
All hygiene tasks must be performed in bed and with attendant assistance, including dental care, toothbrushing, hand and face washing, nail clipping, and hair cutting.
Special bathing care tasks: bone deterioration
Due to severe deterioration of bones in pelvis, Lavana cannot be moved into typical bathing position. Bathing requires a great deal of additional time, and attendant must spend time positioning body extremely slowly to Prevent pain and injury. Additional time must also be spent to Complete all bathing tasks while she is in awkward positions not easily accessible for bathing.
Special bathing care tasks: skin integrity
Care tasks to prevent treat bedsores, rashes, and skin breakdown, including application of medicated creams and lotions, frequent cleaning with anti-microbial wipes, cleaning with soap and water, re-positioning of body, rubbing of skin to promote circulation
Complete assistance in dressing
Requires complete assistance and body repositioning and movement for changing clothing.
Special dressing task: PCA machine
Due to bone destruction, Lavana has limited range of motion. Attendants must spend extra time to Reposition her extremely slowly and carefully during the dressing process. In addition, she uses a PCA machine which is attached to her arm. Clothirg must be placed through PCA machine, when coming on and off. Bandages for PCA machine must be cut and renewed it every several days.
Complete assistance in transferring
Lavana is bedbound and cannot currently transfer out of the bed. However, she requires body repositioning within the bed throughout the day. Attendants must perform transfer of weight and movement of body within the bed. She often slides down due to the angle of the hospital bed and needs to be repositioned upward.
TOILETING, BOWEL AND BLADDER CARE
Assistance in toilet, bowl and bladder care
Lavana uses a bedpan and urinal device in bed for all toilet care. She is unable to transfer weight to use the bedside commode. She requires complete assistance with operation of toileting devices.
Specialized care: incontinence
Lavana is experiencing intermittent incontinence. She requires shifting of body weight to place pads underneath her. When needed, she requires additional changing of linens and clothing due to accidents. Due to bone destruction, she is unable to put diapers on and off, as this would create additional stress on her structural system.
EATING & FEEDING
Assistance in eating and feeding
All food must be brought to bedside, and attendant must be closely present for feeding. She requires assistance with body positioning in order to eat, as well as lifting of liquids and glasses. She experiences difficulty with drinking due to orthostatic intolerance which causes dizziness, as well as gastrointestinal problems.
Specialized feeding tasks: nutrition and hydration monitoring
Lavana has been diagnosed with severe malnourishment due to food intolerances and has experienced significant weight loss. She Requires close constant supervision and assistance for adequate hydration and nutrition.
IADLS: complete assistance
Lavana is 100% bedridden. She requires complete assistance with all IADLS: food preparation, kitchen cleaning, shopping, errands, trash removal, recycling, bedroom cleaning, putting away clothes and items, organizing household supplies, receiving packages, etc.
Special IADLS: bedridden supplies
Researching, purchasing, inventory, and supply management for care of bedridden patient. Including trying different types of medical supplies to discover which are feasible to address patient needs. Bed pans, bed pan liners, absorbent pads, hospital bed accessories, no rinse body washes, waterless shampoos, betting that does not exacerbate skin problems, air pressure mattress and devices, antimicrobial wipes with ingredients that do not exacerbate sensitivities, skin lotions for itching and bedsores, edible toothpaste, dental hygiene supplies that can be used from bed, towels, etc.
Special IADL care tasks: Neurosensory, Perceptual and Motor Disturbances
Due to her symptoms of severe hyperacusis and neurosensory disturbances caused by me/cfs, she requires all activities in the household be done extremely slowly and quietly. Attendants need additional hours to complete tasks at half-time, moving more slowly and in silence, Including walking, talking, closing of doors, moving within room, opening drawers, hands on care, dressing, bathing, etc.
Special IADL care tasks to address skin breakdown
Attendants Requires additional time for extra laundry, linens, and changing of clothing and bedsheets. Lavana has experienced skin problems including itching, sweating, rashes, and skin breakdown, at risk for infections and bedsores, caused by medication reactions, Immobility, And difficulties with toilet care. To address these problems she requires changing of clothing and bedsheets and washing clothes and linens multiple times a day. As well as washing and drying on extra long hot cycles to address dust and mite allergies.
Special IADLs care tasks: food preparation
Lavana has been diagnosed with severe malnutrition.Due to food intolerances, she is unable to consume pre-prepared foods or packaged. She is on a medically restricted and limited diet. All foods must be prepared according to specialized instructions. This requires additional attendant care time.
Lavana requires assistance with medication reminders, dispensing medication, pharmacy refills, online ordering, purchasing and tracking medical supplies, supplements, administering suppositories as needed.
Lavana requires administrative support tasks to remain in her home. The case workers at Hospice as well as other agencies do not provide comprehensive support in this area and they are not available to ongoingly provide the time-consuming hands-on assistance required for these tasks. Tasks include completing paperwork, mailing, copying, faxing, researching, printing, and other tasks to maintain Medicaid, food stamps, housing assistance, hospice care, medical care, communications medicaid workers and fiscal intermediary, disability accommodations, landlord accommodations, Financial management, Technology assistance, hospice care coordination, medical records, and other critical tasks.
Lavana Flowers – MEDICAL SUMMARY
Diagnosis: Lavana has been diagnosed with matastatic cancer with severe bone destruction and severe malnutrition. In addition, she has an ongoing chronic diagnosis of severe Myalgic Encephalomyelitis, a systemic neuroimmune condition characterized by post-exertional malaise – a reduction in functioning and a severe worsening of symptoms after even minimal exertion. Medical records note intractable cancer pain, Thoracic spine lytic lesions, atypical chest pain, and supraventricular tachycardia.
Nutrition: Weight loss of 15+ pounds. Severe malnutrition due to food intolerances.
Symptoms: Experiencing severe pain due to immobility, structural strain, and Extensive bone destruction. Continues to experience symptoms of ME/CFS neuroimmune disorder.Her medical records document severe Fatigue and Muscle Weakness, along with Myalgia, Orthostatic Dizziness, Anxiety Disorder, Panic Disorder, Headaches, Foot and Leg Pain, Post Exertional Malaise, Adrenal fatigue, Food Intolerance, and Compound heterozygous MTHFR mutation. Additional symptoms and diagnosis include pain in the muscles and joints; headaches; cognitive symptoms including spatial instability and disorientation; hyperacusis including severe sensitivity to sound and vibration; gastrointestinal symptoms including nausea and abdominal pain; muscle fatigability and weakness; poor coordination; and cold and heat intolerance.
Functional Limitations: Due to severe fatigue, pain, and muscle weakness, she is bedbound with symptoms that fluctuate and are unpredictable. She requires full assistance with bathing, dressing, toiling, transferring, mobility and eating. She has limited joint motion.
Health Status: Her current health status is unstable. She is bedridden and often immobilized in bed. Due to orthostatic intolerance, sitting upright can cause severe dizziness, as well as pain due to bone destruction. Her range of motion is limited, including severe limitations in movement, rolling, and shifting of weight. She continues to experience debilitating fatigue and muscle weakness, and post exertional malaise causing a worsening of symptoms after any minimal exertion.
Medical Needs: Her current medical needs include multiple, complex, interrelated medical conditions, placing her at high risk of medical instability. She requirecontinual supervision for nutrition and hydration. She requires assistance to be onsite with her throughout the day and night to ensure she is able to safely remain in her home in the community and avoid nursing home placement. Her medical condition is continuing to worsen and care needs require these additional hours from Medicaid waiver home aide services.
Medical records from Oak Hospital indicate: “Extensive osseous destruction of the right pubic rami and medial left pubic rami which may represent primary neoplasm or metastatic disease. Extensive lytic disease of the right femoral head, neck, and intertrochanteric region with a suspected pathologic impacted fracture of the femoral neck.” “Right Breast mass with right axillary adenopathy and extensive lyric osseous metastasis.” “Osseous metastatic disease is most severe at the right hip, where there is a near complete destruction of the right femoral neck, with tumor infiltrating and expanding the right superior and inferior pubic ramus and the medial aspect of the left superior pubic ramus. There is an associated right iliac adenopathy.” “Folate deficiency, Vitamin D deficiency, severe protein calorie malnutrition” “Pathologic right hip fracture and intractable cancer pain due to Metastatic breast cancer.” “Thoracic spine lytic lesions, atypical chest pain, supraventricular tachycardia, and severe protein calorie malnutrition.” “History of chronic fatigue syndrome, severe protein calorie malnutrition, chronic abdominal pain, adenocarcinoma of the right breast with extensive bony metastasis including pelvis and right hip and pathologic fracture with severe pain.”