Florida Crosscutting Topics and Themes
Discussion | The Caregiver Relationship | The Skills and Qualities of Caregivers | Problems When Hiring Family Caregivers | Physical Problems Caused By Caregiving | Previous Experience With Agency Workers | Relationship with the Consultant | Alternate Uses of the Cash Benefit | Problems with the Program | Benefits of the Program
The consumers interviewed in Florida included children with disabilities under the age of 18 (#11, 12, 18, 19, 20, 22, 24) and children with disabilities who were over the age of 18 and cared for by older parents (#8, 9, 13, 17, 21). Their experiences and needs differed from those of the other consumers in the program (#1, 2, 3, 4, 5, 6, 7, 10, 14, 15, 16, 23). In Florida, parents of children with disabilities were able to act as representatives and paid caregivers at the same time.
The consumer stories from the Consumer Directed Care program share a number of themes. In this section, the caregiver relationship, the skills and qualities of caregivers, problems when hiring family caregivers, the physical problems caused by caregiving, previous experience with agency workers, the relationship with the consultant, the alternate uses of the cash benefit, problems with the program, and benefits of the program are discussed.
Consumer Directed Care consumers hired both family and non-family caregivers. Consumers had a variety of different relationships with their caregivers. Mothers were important as caregivers (# 8, 9, 17, 21, 23). Ms. Cannon (#23) has been cared for by her mother for 32 years since she was paralyzed in a car accident. She describes her mother as her “complete life source” and is grateful for all the care she provides. Grandmothers also provide care (#12, 18, 24). Grandfathers are caregivers, too (#11). Paul Farmer’s grandfather works as his caregiver while his grandmother acts as his representative. Sarah Sullivan (#12) is an 8 year old girl with cerebral palsy. Her parents rely on Sarah’s grandmother for care half of the year when she is in Florida. Daughters are caregivers (#2, 4, 15, 16). Several daughters had difficult relationships with their mothers (#2, 4). For example, Susanna Burris feels emotionally drained by her mother’s care (#2). In a more positive relationship Mrs. Lynch (#15) is cared for and protected by her daughter, who will not allow the manager of the adult living community to evict her mother because of her incontinence. Several sons act as caregivers (#3, 5). Mr. Newman’s (#3) son and his wife have cared for him for twenty years, the last seven years through his Alzheimer’s disease. Ms. Dunlap is cared for by her sister (#7) and her sister’s family. Mrs. Bennett (#14) is 98 years old and is cared for by her granddaughter with help from her grandniece and a non-family caregiver.
Several Florida consumers hired non-family caregivers (#1, 10, 13, 14). Mr. Joyner’s non-family caregiver (#10) took a pay cut to keep working for Kent Joyner because she thought it would be better for him to have consistent care. Family friends and community acquaintances are also hired as caregivers (#6, 19, 20). Jay Andrews (#19) is cared for by a non-family caregiver with teaching experience, who Mrs. Andrew’s met through a babysitter.
Many consumers received unpaid caregiving from family members is addition to paid care through the program.
Caregiving is an important aspect of the experience of consumers in the program. Both consumers and caregivers have clear ideas about what makes a good caregiver. While there were a variety of skills and characteristics mentioned by the 24 consumers and their caregivers, three characteristics were particularly important; honesty and trustworthiness (#1, 6, 10, 13, 14, 15, 23), being pleasant (#1, 4, 5, 6, 8, 14, 15, 24), and patience (#4, 8, 11, 15, 17, 18, 20). Mr. Joyner (#10) is especially grateful to have an honest careworker after a previous agency careworker stole from him. Mrs. Lynch (#15) was seriously hurt by an agency careworker who pushed her down and took money from her. Consumers also value a pleasant relationship with their caregivers. Mrs. Brown (#24) thinks that her son Dwight does much better when he has caregivers who care about him personally. Patience is also an important characteristic for a caregiver, according to Florida consumers. Mrs. Aguilar (#20) values the kindness and patience shown to her daughter Bonnie by a non-family caregiver the family calls “Tia” or Aunt. Mrs. Aguilar has two children in the CDC program and a calm, responsible caregiver is very important to her and the children.
Some of the other characteristics mentioned as important for a caregiver include flexibility (#4), cleanliness (#5, 23), hardworking (#5), consistent (#13), and dependable (#14). Even though dependability was not mentioned explicitly, it is important to consumers because they often mention their dissatisfaction with their previous agency experiences because of undependable agency workers. While Mrs. Brown (#24) says that caregiver’s “don’t have to have a bachelor’s to change a diaper or lift people,” other representatives mentioned concrete skills that are important. Such skills include sign language for the caregiver of Ms. Covas (#8) who cannot hear or speak, and knowledge of CPR and knowing when to call 911 for Mrs. Aguilar (#20) who has two children with disabilities in the program.
Five consumers and representatives described the problems they have with hiring and supervising family caregivers (#2, 4, 5, 14, 16). Susanna Burris (#2), who care for her mother, says that it is not possible to provide both emotional and physical care to her mother at the same time. She is exhausted and depressed by her caregiver role. Mrs. Morris (#4) hired her daughter, who is not yet 18, as a caregiver. She says that she and her daughter have a difficult mother-daughter relationship and that her daughter cannot wait to move out when she is 18. The consultant does not think that the daughter is reponsible and does not always provide the care she should. Mrs. Erdman (#5) hired her son as a caregiver. She is very happy with his work now, but had problems at the beginning with him trying to take advantage and not providing care. She wrote down a schedule and tasks so her son’s responsibilities were clear and she continues to be strict with him. Mrs. Bennett’s granddaughter (#14) hired family members in the past, but she says that they always think they know best and are difficult to work with. Mr. Beal (#16) hired his daughter as a caregiver and they have an ongoing, negative relationship and conflict over the money she receives as pay. His previous caregiver was his granddaughter and they also had conflicts over money. According to Mr. Beal’s daughter, other members of the family took sides with Mr. Beal over the money conflict.
Caregivers and representatives spoke about the injuries they sustained while caring for a consumer (#6, 8, 14, 18) and difficulty with lifting consumers (#2, 7, 12, 23, 24). Mr. Trappani’s mother (#6) had a serious fall and could no longer provide the physically demanding care her son, who has muscular dystrophy and is a quadriplegic, required. Mrs. Covas (#8) fell with her 37 year old daughter and describes how she needs to help her daughter become independent or find another living situation before she becomes exhausted. Mrs. Covas is also watching her daughter’s weight so she does not become too heavy to lift. Mrs. Bennett’s (#14) granddaughter has a bad back as a result of a fall in the shower when she was helping her grandmother. She still helps Mrs. Bennett, but cannot do heavy physical work or help her with showers. Yolanda Benevides’ grandmother (#18) is kicked repeatedly by her granddaughter, once so seriously on a breast that she had to have a mammogram after the swelling subsided.
Caregivers find lifting consumers to be very difficult (#2, 7, 12, 19, 23, 24). Mrs. Burris (#2) often has to stay in bed because her daughter cannot lift her into a bedside chair. Ms. Dunlap’s sister (#7) describes transporting her sister to the doctor’s office as her biggest problem because her sister is so difficult to transfer into the car. The Sullivan’s daughter, Sarah (#12) has just started to use a power wheelchair, which at 300 lbs., is impossible to lift and difficult to transport. Mrs. Andrews (#19) was injured in a car accident before the program started and was no longer able to work with her 7 year old autistic son as she had before. Mrs. Cannon (#23) provides total care to her 53 year old quadriplegic daughter around the clock. Mrs. Cannon is in her seventies and has her own health problems, but she says that the hardest thing she does is move her daughter. Mrs. Brown (#24) has difficulty lifting her son Dwight who is nine and now weighs 100 lbs. He has cerebral palsy and has only partial use of one arm so he is very difficult to lift. She pays her brother as a caregiver so he will help with lifting and has to have at least two people to help transfer her son.
Florida consumers described their dissatisfaction with their previous experiences with agency care. A number of consumers disliked agency workers because they were not reliable (#2, 5, 10, 14, 23, 24). Susanna Burris (#2) could not keep her job because agency workers never arrived on time so she could leave for work. Mrs. Erdman (#5) complained that agency workers would not come when she needed them to arrive and would often call multiple times to change their hours. Sometimes they did not show up. One time, an agency supervisor had to come help Mrs. Erdman shower because there were no agency workers available. Kent Joyner (#10) has M.S. and needs help early in the morning when he has energy. Agency workers often arrived late and it was a worry because he “needs to know help is coming.” Mrs. Bennett’s granddaughter (#14) almost lost her job because agency workers did not come on time and she could not leave to work in her own small business. Mrs. Bennett’s granddaughter (#14) mentioned that in one two week period, her grandmother had a different agency worker every day. Mrs. Bennett is 98 and requires personal care and help with showering. Her granddaughter felt that her grandmother needed more consistent care that provided her with some privacy and dignity because of her age and her modesty. Ms. Cannon (#23) receives care throughout the day on a strict schedule. When agency workers were late her mother had to begin providing the care. By the time the agency worker arrived some of the most difficult work was already finished. Mrs. Brown (#24) also objected to her 9 year old son being changed and dressed by many different agency workers. She feels that children with disabilities need consistency and structure and personal privacy and dignity. Mrs. Andrews (#19) also said that her 7 year old son Jay, who is autistic, did not do well with many different agency workers. Jay needs to have structure or he “backtracks,” and becomes less functional.
Some consumers disliked having strangers in their homes (#2, 5, 6, 14, 24). Mrs. Trappani felt very uncomfortable with people she did not know coming into her home to care for her son Richard. Susanna Burris (#2) said that her family found some of the agency workers to be “weird” and suspected them of using drugs. One agency worker told Mrs. Burris that she invented a “bug zapper” to destroy bacteria. Several agency workers had boyfriends who Susanna Burris found threatening. Ms. Cannon (#23) describes agency workers whose family members would sit outside her home in cars and blow the horn impatiently so the worker would hurry up and leave for the day. Mrs. Erdman (#5) claims that one agency worker told her that she had faked the C.N.A. training and was not qualified to work.
Two consumers were concerned by the lack of cleanliness of agency workers (#16, 23). Mr. Beal (#16) was disgusted when an agency worker emptied dirty water from cleaning the bathroom into his kitchen sink. She then poured cleaning water full of chemicals on his lawn. Nikki Cannon (#23) said that she had to remind agency workers to wear gloves when they worked with her. She also said that she received substandard bed baths from agency workers. Two consumers had problems with dishonest agency workers (#10, 15). Kent Joyner (#10) had a worker steal from him and Mrs. Lynch (#15) not only had an agency worker steal money from her, but she was pushed to the floor and had to be hospitalized for several days after the incident.
Florida consumers had varying amounts of contact and interaction with their state consultants. Consumers and representatives made both positive (#1, 4, 5, 6, 8, 11, 15, 17) and negative (#12, 13, 16) comments about their consultants. Consultants were positively described as guides to the program who provided access, help, and resources. For example, Mrs. Covas (#8) said that her consultant spoke Spanish and was always available to her. Mrs. Gabriel’s (#17) state consultant helped her find high quality respite care for her daughter. The Sullivan’s (#12) had a negative opinion of their consultant. They thought the consultant acted as one more middleman between their daughter and needed services. The Sullivan’s were frustrated because they thought that they were teaching the consultant her job. Mr. Beal (#16) was angry at his consultant who intervened between a conflict between him and his daughter over the use of her caregiving pay. Mr. Beal thought that the caregiver did not listen to him and patronized him because of his disability.
Florida consumers used the cash allowance in many ways in addition to pay for caregivers. Consumers used the money for personal care items (#1, 3, 7, 8, 11, 14, 15, 17, 22, 23, 24). Diapers are very expensive and were mentioned frequently as an item paid for out of the cash allowance (#11, 12, 15, 22, 23, 24). Several parents of children with disabilities liked the fact that they could save money by using coupons when they bought their own diapers and get more supplies for their money than possible when receiving supplies through the state. Disenfectants and cleaning supplies were also mentioned. Ms. Cannon (#23) needs disenfectants for her room, air fresheners, over the counter laxatives, and many supplies to keep herself healthy as a quadriplegic. Ms. Dunlap’s caregiver (#7) uses a tube of Neosporin a week at $7 a tube to control her sister’s skin rashes, the cash benefit is important for them to be able to supply the needed items. Two parents of children with disabilities used the money to pay for dental visits for their children (#8, 17) and one paid for the repair of broken glasses (#17). Paul Farmer’s grandmother (#11) used some of the money to pay for clothes for her 10 year old grandson who was outgrowing his clothes quickly. Consumers also used the money for medication (#3, 5) oxygen (#7), and supplemental nutrition drinks (#12). Mrs. Erdman (#5) uses her entire cash allowance to pay for one pill.
Consumers used the cash allowance to buy assistive devices (#4, 7, 8, 11, 12, 13, 22, 24) and pay for home modifications (#10, 12, 24). Mrs. Morris (#4) buys supplies for her scooter and is saving her money for a Medic Alert system, for example. Ms. Dunlap’s family (#7) used the money for a hospital bed. Mrs. Covas (#8) and the Sullivans (#12) each bought a bed for their daughters. The Sullivans bought a bed that looks like a child’s bed, but functions like a hospital bed. Paul Farmer’s grandmother (#11) bought an adaptive bicycle for Paul. It provides exercise and back support and can also be used as a tricycle. The Sullivans (#12) have bought many assistive devices for Sarah who has cerebral palsy, is quadriplegic, and uses a power wheelchair. They used the cash allowance to buy adaptive spoons and plates, and a slant board and writing instruments for their daughter at school. The Connolly’s (#13) use the cash allowance for costs associated with upkeep of the power wheelchair their son Adam uses. They also pay for repairs that Mr. Connolly cannot do himself, to the van they use to transport their son. Jenny Hollins parents (#22) bought her a helmet for protection. Mrs. Brown (#24) buys pads for the electric stimulation machine her 9 year old son Dwight uses during therapy.
Several consumers use the cash allowance to build ramps. Kent Joyner (#10) had a ramp repaired so he could leave his apartment. The Sullivans (#12) built a ramp for Sarah’s grandmother’s home so she could visit. Sarah’s grandmother is saving to have her home’s doors widened. The Sullivans said that they would never be able to use Medicare money to adapt Sarah’s caregiver’s home, but that it is important for their daughter to be able to visit her grandmother, and this is a big help to them because it gives them a break, too. Mrs. Brown (#24) had a ramp built in her bathroom and is gradually modifying her house for better access for her son Dwight. She is looking to her son’s future use of the house and his needs as he gets older. Kent Joyner (#10) used some of his cash allowance to pay for ternite extermination.
Florida consumers use the cash allowance to pay for a variety of other items and services as well. Several parents of children with disabilities mentioned that they paid for therapy for their children that was not otherwise covered (#8, 9, 24). The Arroyos care for their 27 year old autistic daughter Marilena. They use the money to pay companions to stay with her and work on socialization. They also pay for massage therapy, music therapy, and plan to use the money for psychological counseling. The Covas family (#8) also paid for psychiatric counseling to help them deal with their daughter’s extreme dependence on her mother. Mrs. Brown (#24) pays for therapy for her son Dwight which she has been committed to since his birth.
Mrs. Lynch (#15) pays for one day a week at adult day care and the $5 transportation fee. Mrs. Scofield (#21) pays for van transportation for her son Ian 5 days a week. She drives him to work in the morning, but has more flexibility in her schedule because he is brought home in the afternoon. Mrs. Gabriel (#17) pays for her daughter Lynnette’s summer camp fees and club activity fees with the cash allowance. The summer camp and club events provide Lynnette with a social life and provide her mother some respite, something that Mrs. Gabriel says she never takes for granted.
The cash allowance helped two consumers’ families in their work situations (#2, 14, 23). Susanna Burris (#2) could no longer work because she provided care for her mother. The cash allowance offset the loss of income and made it possible for her to stay home and kept her mother out of a nursing home. Mrs. Bennett’s granddaughter (#14) was able to keep working because she hired a dependable caregiver for her grandmother’s care. Mrs. Cannon (#23) was able to provide care at home to her daughter and did not have to work outside driving a school bus which she had done for many years. Mrs. Cannon thought that the cash allowance allowed her to keep her daughter out of a nursing home.
Respite care was mentioned as an important service purchased with the cash allowance (#2, 3, 11, 12 13, 14, 17, 21, 22). The Connollys enrolled their son Adam (#13) in a center which provided them with a break and gave their 26 year old son his own “social world.” Mrs. Gabriel (#17) gets psychological and emotional relief because she knows she can get respite from her daughter’s care and provide her daughter with a safe, enjoyable break, as well.
Florida consumers use the cash allowance in a variety of ways. Parents of children with disabilities are especially conscious of the therapy, assistive devices, and supplies their children need and the most efficient and inexpensive ways to acquire these goods and services.
Consumers described problems with the program including the large amount of paperwork (#2, 6, 8, 10, 24) and accounting problems such as reading the financial statement and keeping track of the balance of the cash plan (#4, 9, 10, 11, 12, 18). The accounting difficulties resulted in overspending of the cash plan (#15, 17, 23) which was a hardship to repay, and difficulty keeping track of caregiver’s hours (#2, 14). Two consumers felt they received conflicting information about the use of the cash plan (#2, 16). One consumer did not like the fact that the consultant had the final say in the use of the money (#12). A caregiver complained that the pay did not include any benefits (#2), such as health insurance and retirement.
Mr. Joyner (#10) found the paperwork overwhelming. A number of consumers and their representatives agreed. A bigger problem was the confusion with the accounting in the program, especially unreadable monthly statements. Mrs. Sullivan (#12) is an accountant who keeps a spreadsheet of the allowance and expenditures. She said that she could not even read the monthly statements, and the balance never matched hers, which she knew to be correct.
Three consumers overspent on the cash plan with caregiver’s hours. This money had to be repaid which was very difficult. Ms. Cannon (#23) said that she mistakenly thought that there was more flexibility in the cash plan with caregiver’s hours than turned out to be the case. She thought that the cash plan could be adjusted easily if more hours were needed. Instead, she overspent the cash plan with caregiving hours and had pay it back. Ms. Cannon blamed the problem on her inexperience in estimating what she needed in caregiving hours and supplies at the start of the program. Mr. Beal (#16) disagreed with the consultant over the proper use of the cash and Mrs. Burris’ daughter (#2) checked with a program representative from Washington D.C. because she did not think the consultant was correct about use of the money. She also had to quit her job to care for her mother, but she felt that the caregiving pay did not cover the health benefits and retirement benefits she no longer received. The biggest problem with the CDC program seemed to stem from start-up problems with accounting procedures and paperwork that were improving by the time the Florida consumers were interviewed.
While consumers gave a variety of answers about the benefits of the CDC program, the importance of financial help, respite care, control over care, the flexible use of the cash allowance, and choice were the most frequently mentioned benefits. Consumers liked the program and would recommend it to their friends. Several consumers asked the interviewers if the program would continue and Mrs. Brown (#24) hoped that the program would be available for her 9 year old Dwight when he was older, because there are not many services for older children with disabilities.
The financial help was appreciated by a number of consumers (#2, 4, 5, 7, 9, 12, 21, 23). Both Mrs. Morris (#4) and Ms. Cannon (#23) needed the financial help to buy personal supplies which are necessary for their health and hygiene. Two caregivers (#2, 23) can stay home to care for their family member because of the financial help, which, in both cases, keeps the consumers out of a nursing home. Four caregivers (#4, 5, 7, 15) said that the caregiving job with the program was an improvement over other work. Mrs. Morris’ daughter (#4) said that because she was paid her caregiving was “not just favors here and there all over the place.” Mrs. Erdman (#5) said that she got more work from her family caregiver than she did from agency workers. Her son liked the work because it was less stressful when you worked for someone you know. He appreciated the pay because he used it for his monthly car payment. Ms. Dunlap (#7) appreciates being able to pay her sister for care because then she does not feel like such a burden to her sister and her family. Mrs. Lynch’s daughter (#15) said that receiving money for caregiving motivated and encouraged her to provide even more care than she was paid for.
The cash allowance allows consumers and their representatives to pay for respite care (#3, 11, 12, 13, 21, 22). Adam Connolly (#13) has recently made great progress after his medication was adjusted. His family is able to pay for him to attend a daycare center with the cash allowance. He has his own social world and his mother gets a break from caregiving which helped the whole family. Mrs. Scofield (#21) was grateful for the financial help because since her son did not need the services of an agency worker she did not realize that he was eligible for personal care services. The ability to pay for a friend to supervise her son has helped her tremendously and allowed her to do things outside of the house.
Control over care and expenditures was mentioned as a benefit of the program by a number of consumers (#3, 5, 6, 8, 9, 10, 11, 12, 14, 15, 16, 17, 19, 23). Control of caregivers’ hours was mentioned by three consumers (#5, 10, 14). Mrs. Erdman (#5) felt unwell in the morning and cannot use help before early afternoon. Agency workers always wanted to work at 8 a.m. When she controlled her care she was able to decide the caregiving hours that worked for her. Similarly, Mr. Joyner (#10) needed a caregiver early in the morning when he had enough energy to benefit from the care. He hired a caregiver for early hours on the program. Mrs. Bennett (#14) needed help in the late morning and again in the late afternoon. Her granddaughter was able to hire a caregiver who provides care at the needed times. The Newmans (#3) felt that the control of the program gave them the ability to monitor their father’s well-being. Mrs. Arroyo (#9) liked to control the quality of care her autistic daughter Marilena received. Kent Joyner (#10) said that controlling his care gave him something to do. Richard Trappani (#6) also liked keeping track of his care plan and expenditures. Mr. Beal (#16) and Mrs. Erdman (#5) liked the feeling of independence that control of the program gave them. Ms. Cannon (#23) felt that she was able to keep her dignity because she does not have to ask permission to buy every thing she needs.
Flexible use of the cash allowance was very important for Florida consumers (#4, 5, 11, 12, 13, 15, 17, 18, 22, 23, 24). Consumers (#4, 11, 12, 15, 17) can get more supplies, more cheaply when they buy supplies themselves. Parents of children with disabilities use the money to pay for therapy not covered by Medicare.
The importance of choice (#4, 5, 6, 16, 24) in the program was related to control and flexibility. Consumers liked to choose their hours (#5). Richard Trappani (#6) received more help because he was able to choose his caregiving hours. Mrs. Jansen sums up the benefits of the CDC program by saying that it gave her “peace of mind.”