MEMBERS STORIES

1. Margaret,* a CHP member with bipolar disorder...
2. Jim,* suffers from a very rare neurological disease...
3. Bill,* a person with developmental disabilities and a recovering alcoholic...
4. Eleanor,* has been confined to her bed for the past five years...
5. Art,* a 77-year old divorced Korean War veteran...
6. Sally,* a 31-year old woman with Cerebral Palsy...

Margaret

Margaret, a CHP member with Bipolar disorder has complications from a previous stroke and brain tumor - causing issues with her gait, motor skills, and cognition. In the first year and a half of enrollment, she had 20 ER visits and 11 hospitalizations, most of which were for suicidal ideation and management of Bipolar symptoms. Two group home placements were tried but did not work out. She was not happy being away from her family and home, and continued to have ER visits/hospitalizations. Cooperatively, Margaret's Team and CHP's Behavioral Health Services began to focus on keeping her in a home environment. Working with an adult day program, county social worker, psychiatrist, transportation sources, and in-home service providers, supports were put in place to meet her needs while helping her to learn and improve coping skills, and identify and deal with her stressors. The Team also provided support for her spouse to prevent caregiver burnout. As part of her ongoing evaluation, concerns about cognitive decline/dementia were identified with both county staff and a psychiatrist recommending guardianship. CHP advocated for Margaret and it was discovered that her cognitive changes were medication related. After these concerns were addressed, she returned to a normal baseline without a need for guardianship. Overall, Margaret's medical costs dropped from an average of $8000/mo to less than $4000/mo. Monthly hospital costs went from a high of $10,160 to zero in six months time. She has had one episode of mild suicidal thought, but with her Team, CHP's Behavioral Health Services and Community Support Program intervention, her concerns have been dealt with without a need for hospitalization. She is happy to be able to live at home with her family and feels a sense of achievement by learning to manage her symptoms and feels supported in the community.

Jim

Jim suffers from a very rare neurological disease. The disease, most often seen in children, is fatal. In the process of searching for treatments, Jim was excited to learn about an experimental drug being used to treat the condition and asked his CHP Team to make arrangements to receive treatments with this medication. Unfortunately, the request for the drug was initially denied due to the lack of published research as to its effectiveness. Jim felt strongly enough about obtaining the drug and filed an appeal with CHP's Grievance & Appeal Committee. CHP consulted with a local family practice physician, regarding the drug's use. The physician indicated the drug therapy could be an effective treatment and recommended its use. CHP's Grievance & Appeal committee felt strongly that approval of the drug's use was an excellent example of CHP's commitment to serving people with complex needs and upheld the member's appeal. Because the supply of the drug is so limited in the United States and is primarily reserved for children, the process to obtain it required Jim be enrolled in a special Temporary Access Program, a measure implemented to manage supply and usage for adults. Jim's treatments require a trip to a Minneapolis, MN, hospital once every two weeks to receive a three-hour IV therapy. A homecare worker accompanies Jim and assists him with meals and toileting. Since receiving this medication, incredible progress has been made. Jim can now stand completely unassisted and general mobility continues to improve along with overall endurance, range of motion, and balance. He now uses a manual wheelchair at home and is able to sleep more often in a normal bed. This scenario is a perfect example of CHP's ability to do the right thing, at the right time, for the right reasons.

Bill

Bill, a person with developmental disabilities and a recovering alcoholic, resides in a trailer home on a small hobby farm. He frequently interacts with his mother who lives in another trailer home nearby. In addition to cooking all his meals, Bill's mother handles all his finances. At times, this has been a particular challenge, as close relatives have been known to take advantage of Bill by diverting some of the few dollars the member does have for themselves. Bill and his mother own several horses and care for them on a daily basis. They also handle horses for other local horse owners. A favorite outing for them is to attend one of many horse pulls held in Wisconsin and neighboring states. When he initially became a CHP member, CHP staff found Bill's personal living conditions to be deplorable. His trailer home was scattered with cat feces and garbage, and litter was piled up in many places. Black mold covered the walls of the bathroom and several holes could be found in the floor throughout the trailer. During the Team's initial visits, staff would meet with Bill at his mother's trailer home as they were unable to withstand the smell in the trailer. Under medication for his epilepsy, Bill was prone to forgetfulness and undisciplined in adhering to the correct dosage - often taking all his meds in the morning instead of twice a day as prescribed by his doctor. His personal hygiene was also very poor. While he had many health and living condition issues, Bill was aware of the problems and advised his CHP team early on that the trailer needed to be cleaned and new flooring put in. At the advice of his clinical team, he cleaned out all of the feces and cat litter over the first few months. It took nearly five months, but he finally agreed to have a bath twice a week. He also agreed to take his medications appropriately. He eventually put new flooring in his trailer and through a small financial grant, was able to replace his furnace.

Eleanor

Eleanor has been confined to her bed for the past five years. She has resided in her home with assistance from her son who lives with her and is her activated POA-HC. Her son has been her caregiver for the past 50 years and has provided excellent care with the opportunity to have control of all aspects of her daily living. Eleanor along with her son and her Community Health Partnership team have worked together to develop and implement a plan to provide all services and supplies necessary to support her goal of remaining in her home. When Eleanor fractured her hip, it resulted in frequent transitions between the hospital and a local nursing home due to pain control issues, mobility issues, skin breakdown, decreased levels of consciousness, and nutritional and respiratory complications. She was hospitalized multiple times due to these complications and did not have a DNR determination per her son's request. Other family members, medical professionals, as well as hospital and nursing home staff, encouraged the member's son to keep his mother in the hospital or nursing home and to provide comfort measures until she passes away. This created intense differences of opinion, especially with his concerns regarding cares provided by the hospital and nursing home. Throughout all her health care episodes, when Eleanor has been alert, she has continued to have a positive attitude, humor, a warm smile and touch, and a sparkle in her eye. Her goal remains the same - to live the rest of her life in the home she loves. As a result, there have been ongoing conversations and meetings between the son, other family members, Palliative Care, the Community Health Partnership Team, and the physician. One objective was to assist the son in understanding and accepting his mother's end-of-life status and related issues. Another objective was to continue to provide the best care possible for Eleanor. A conference was held among the son and other family members, the hospital's Palliative Care coordinator, Community Health Partnership Team, the physician and a local hospice agency. The hospice philosophy was explained to the son with the result that he understood and accepted his mother's end-of-life issues. He also understood that the hospice agency and Community Health Partnership Team would continue to work together to provide all necessary equipment and services in their home to meet the wishes of the member to live out her life in her home. This program will also provide the son the opportunity to once again be involved in caring for his mother and allowing input and control regarding her cares like he has done for the past 50 years and has sorely missed. As a result of five months of meetings and counseling, hospital discharge has been planned and our member will now be able to meet her goal to live out her days in the home she loves, surrounded by all the fond memories that her home and family offer her.

Art

Art, a 77-year old divorced Korean War veteran, enrolled with CHP in the Fall of 2006 following a debilitating stroke. After placement in a nursing home, Art, an admitted free spirit, directed his team to help him pursue only one goal, and it came with a definite contingency: having a place of his own with no interference in his private affairs. Unfortunately, significant impairments compromised his goal. His mobility, strength, speech, and swallowing were all highly impaired. His diabetes was uncontrolled. A serious cardiac history, alcoholism, and failure to thrive all contributed to his instability and frailty. A feeding tube accommodated all food, hydration and medications. No one involved in his care could envision or support anything but permanent nursing home placement. The more his caregivers insisted he stay in the nursing home, the harder he pushed back. He became verbally abusive and physically aggressive towards staff. He would often leave the facility during day hours and return inebriated at night. He alienated his only remaining extended family as well as friends. Against medical advice, Art left the nursing home refusing any planning or assistance. He checked into a motel, resumed oral food and liquids, refused all medications including Coumadin, and attempted his own personal care. He soon found himself unable to manage his situation and called upon the motel staff to pick him up off the floor, clean up after incontinence episodes, help him into and out of bed, and do errands. This behavior initiated a series of moves from one motel to the next until he was soon "black listed" in the entire community for trashing rooms, abusing staff, and fee non-payment. Throughout this time, he demanded that CHP resolve his dilemmas but refused or sabotaged every effort of assistance, even eventually "firing" his team. Police, social service, home care agencies, transportation companies, and housing authorities refused him service. Eventually he spent day hours in a drop-in center and nights elsewhere on his own. He refused all efforts to find housing, since all potential landlords required paperwork and personal information. Numerous medical emergencies occurred. Following a hospitalization for failure to thrive, uncontrolled diabetes and malnutrition, the Team persuaded him to try a small group home. After two months, he left the home only to continue his abrasive, abusive, and risk-taking behaviors. He soon found nothing but closed doors to additional resources and assistance. During one crisis after another, his CHP Team performed a delicate and difficult balancing act between intervention and boundary-setting. They struggled over their roles and responsibilities and their member's right to choose. They felt responsible for the consequences of his poor decisions. They became frustrated with a community that didn't know how to help yet insisted that CHP solve his many problems. During the first eight months of this experience with CHP, monthly medical costs averaged over $8200. In time, our member's alienated sister resolved to reconnect. He accepted her help in finding a mobile home to rent. The CHP team immediately sought ways to support the move by providing DME equipment, a hospital bed, a ramp, a power-lift chair, a scooter, and in-home rehab services. He accepted pharmacy set-up and delivery service, Meals-on-Wheels, and the guidance of a dietitian. A new physician was able to provide medical support. Behaviors improved and more extended family entered his life. One of them was hired by CHP as a Family Caregiver and visited daily to provide care and assistance. These relationships have been pivotal to other successes. On his own, our member stopped drinking entirely. His feeding tube was removed by his physician, and he began gaining weight. He now has new mobility freedom with his ramp and scooter and even uses city transportation for weekly senior center visits where he socializes and exercises. He is content and happy. Through unyielding determination, our member defied the collective "wisdom" and "guidance" of many well-meaning service providers who thought they knew best. Science, logic, and reasoning said that he would not survive outside the nursing home setting. Yet he not only has survived, he has thrived. With the consistent support of his CHP Team, the only entity that stood by him through it all, he has made an independent life for himself. His medical costs for the second eight months with CHP have averaged a little over $1900 per month - a savings of over $6000 per month! The Team continues to stand ready to move quickly and efficiently when another support opportunity presents itself, while simultaneously respecting his right to self-direct. It's difficult to describe the frustration and self-doubt that accompanied this journey. Set-backs and crises caused great discouragement and feelings of hopelessness and helplessness for everyone involved. Throughout it all, our member kept his focus on, and finally achieved, his one and only goal.

Sally

Sally, a 31-year old woman with Cerebral Palsy, limited motor skills, and the ability to speak only with the assistance of a voice liberator was looking for a different place to live. Dependent on caregivers for most of her daily living activities, this CHP member was dealing with a number of other medical complications. Due to her intense care needs, she had been cared for in highly-staffed assisted living settings for much of her adult life. This young woman had struggled to acclimate to the routines of congregated living. Personal choices such as regularly attending church, time limited access to the Internet, and other interpersonal struggles with caregivers had left her frustrated. Sally and her CHP care team began investigating the possibility of finding a home and offering her the opportunity to choose her caregivers through CHP's Self-Directed Supports option. After several months of planning, she chose to hire family and friends to care for her at her parent's home, which was modified to accommodate her physical disabilities. Since moving into her parents' residence, she has become more actively involved with her church and with the assistance of a church member, has begun taking piano lessons in her home. She also continues to look for volunteer opportunities in hopes of gaining experience to acquire a job.