New Jersey Crosscutting Themes
The Family Context of Care | Community Context of Care | The Value of the Personal Preference Program | Experiences with Agency Workers | Isolation and Loneliness | Small Families | Living Conditions | Cultural and Ethnic Differences | Men as Caregivers | Skills and Qualities of a Caregiver | Personal Preference Consultants | Problems of the Personal Preference Program
New Jersey consumers and their family care givers spoke about the importance of family care as a part of everyday life, a responsibility and something natural. Mrs. Summers’ (#1) daughter says that it is “natural” to help her mother. Trust is an important component of the family caregiving relationship Mrs. Fernandez (#6) trusts her daughter to give her a bath. Gilberto Santiago (#20) says that he can trust his father more than he would a stranger. Mrs. Perez (#12) says that she gets confidence and respect from her daughter.
Consumers said that they could depend on care from family members because family members know what you need. Gilberto Santiago (#20) describes how his father dresses him in baggy jeans and a hat turned backwards so he can "look good." Having a family caregiver also allows consumers to have a normal schedule.
Many consumers mentioned that good relations were part of the family context of care. Mrs. Nolan (#16) likes her family caregivers because, “I feel like they love me.” Mrs. Scholl (#5) says that she can depend on her daughter as a caregiver. Her daughter says that “It is good just to be with my mother.”
Community services and relationships were important to several consumers. For example, medical transportation through a local seniors group or Social Services was important to some consumers. Religious support was also important. Ms. Nguyen (#11) is involved with a local Vietnamese religious community. Her caregiver says that caring for his former teacher is a spiritual duty and that she always prays for him. Ms. Grasso (#22) is involved as an advocate and organizer for consumers with disabilities group.
In discussing the value of the Personal Preference Program, many consumers mentioned that when they hire their own family or non-family caregivers, they know they will be cared for. Mr. Maimoni (#4) says that he can pay his two non-family caregivers more than they make with an agency so they are more dependable and effective workers. Mrs. Blanco (#24) knows that she will get consistent care from her daughter. Consumers also mentioned that they do not have to worry about agency workers and it is safer with no strangers in your house.
Choice is important to consumers. Mr. Brown (#17) says that the Personal Preference Program is 200% better than what he had before. He likes to choose a caregiver who will cook and clean in a way acceptable to him. Flexible work schedules are an important value to both consumers and caregivers. Mrs. Scholl (#5) appreciates being able to adjust the hours of care she needs from her daughter. Mr. Gurov (#15) likes the freedom to choose the times he needs help from his father and having a normal schedule at home. Flexibility in the use of the cash benefit is also important to consumers. Mrs. Tyshenko (#14) appreciates being able to buy needed kitchen appliances. Before the program, Mrs. Summers (#1) had to pay for every service such as cab rides and grocery shopping, now she has a family care giver who is able to provide her with all the help she needs.
Consumers feel less stress on the Personal Preference Program. Mr. Jackson (#19) feels that hiring his own caregiver “takes the pressure off.” He does not have to have strangers in his home, he knows he will get good care from his wife, and the money helps the family. Mrs. Scholl (#5) feels “peace of mind” because of the choice and flexibility allowed in the program. Ms. Grasso (#22) says that the program keeps her out of a nursing home. Mr. Gurov (#15) feels less of a burden to his father who he can pay as a caregiver. Consumers discussed feeling “relieved,” and more relaxed and happy with the program.
In addition to paying for caregiving, consumers used their cash benefits in a variety of ways. Medical equipment and supplies such as grab bars for the bath, a heart monitor and blood pressure cuff, and an electric bed were purchased or planned for purchase. Mr. Brown (#17) buys supplementary drinks because, although he has unexplained weight loss, the HMO manager will not authorize the purchase of the drinks with his Medicaid card.
Consumers used the cash benefit for appliances such as a microwave and mixer, a refrigerator and a toaster oven. Ms. Robinson (#10) wants to request a washer and dryer on her cash plan, but her consultant is concerned that because she does not live in her own apartment, her appliances may be appropriated by the owner of the house if she moves out. Mrs. Taylor (#9) used her money for moving expenses and plans to purchase a vacuum.
Additional uses of the cash benefit illustrate the multiple needs of the consumers and their resourcefulness. Mr. Maimoni (#4), who is a quadriplegic, uses his money to pay someone to fix or move things. Mrs. Ramirez (#8) bought a new door lock after an attempted break-in. Mr. Maimoni (#4) and Ms. Grasso (#22) use part of their cash to pay for various computer equipment and voice recognition software. The cash benefit is also used for transportation and laundry and cleaning equipment. Mrs. Jackson (#19) buys cleaners and deodorants in caring for her husband who is a dialysis patient. A family care giver and a representative discussed requesting an air conditioning unit for the consumer for health reasons. Mr. Gandia’s (#21) representative purchased an insurance policy.
Consumers were not always clear about what they could purchase. Mr. Nelson’s (#18) wife and representative thought that he needed an air conditioning unit, but wondered if this was a “basic need.” Mrs. Jackson (#19), as caregiver for her husband, was reluctant to ask her husband to request needed items like a microwave and an air conditioning unit because they benefited her, too. In one case, the consumer could not afford to buy an item and then wait to be reimbursed, as suggested by her consultant.
Consumers told overwhelmingly negative stories about agencies and workers. The most common complaint about agency workers was that they did not do anything. Mrs. Dunne (#2) said that you had to ask the workers to do everything or they would do nothing. Mr. Santiago (#20) said that agency workers “just come and say no.” The workers who came to work with his son, who is a quadriplegic, could not transfer him, give medication, or suction him so his father had to do everything anyway. Mrs. Scholl (#5) said that “Anything I asked them, they always had a no answer for.” Agency workers would not take her for a walk or take her to the doctor’s office. Mrs. Moreno (#23) had an agency worker who filed her finger nails and watched TV. Because she was not bathed properly she developed a rash. Mrs. Fernandez’ family caregiver (#6) described how agency workers did as little work as possible. They would not change sheets, but leave them for someone else to do, and would not comb her mother’s hair “because they did it yesterday.” Mrs. Summers (#1) described agency workers who would do the minimum amount of work and leave her house after a half an hour.
Consumers described agency workers who came to their house drunk, sick, stole from them, and were rude. Mr. Brown (#17) felt that agency workers had an attitude and were rude and uncooperative. Mrs. Robinson (#10) described an agency worker who was pregnant and refused to clean the floor. Mrs. Robinson’s young daughter was hospitalized for two days after mistakenly taking medication an agency worker brought for herself. In one of the most extreme cases, Mrs. Ramirez (#8) was left lying on the floor in her basement apartment because the substitute agency worker left when she did not answer the door. Mrs. Ramirez’s daughter lived upstairs and spoke to the worker first. Even though the worker knew about her mother’s condition she did not go even bother to go upstairs to tell the daughter that her mother had not answered the door, but left instead. It was not until later that day, when her daughter came home from work that she heard her mother calling for help from her apartment.
Consumers complained that agency workers do not show up or the agency sends different people all the time. Angela Grasso (#22) found that substitute agency workers often spoke poor English and could not understand her speech. She also felt that agency workers were not adequately trained, but thought they knew best how to help her, and would not listen to how she wanted things done. Several consumers hired previous agency workers who they liked, but they were happy not to deal with the agencies themselves.
Consumers expressed feelings of isolation and loneliness. Some consumers feel that they need more contact with others. Mr. Maimoni (#4) says that he gets claustrophobic if he can’t get out of bed and out of the house everyday. Mrs. Dunne (#2) speaks of depression that comes from her isolation and lack of contact with other adults.
Consumers often were part of small families which added stress and burden to family caregivers and consumers who tried to take care of everything themselves. Mrs. Scholl’s family caregiver described how her life was about “running, running, running,” caring for her own family and her mother. The Gurov family (#15) includes only the consumer, his father, and his daughter as family.
A notable feature of the lives of consumers in New Jersey is that many live in run-down urban areas and in ethnic neighborhoods with poorly maintained houses. Interviews were conducted during very hot weather in late summer. Some consumers lived in stiflingly hot apartments with no air conditioning, ventilation, or air circulation. Several apartments were particularly decrepit. Mr. Maimoni (#4) lived in a windowless basement apartment. His consultant was concerned about his living arrangements, which she felt was depressing, but he did not want to move. Two consumers lived in apartments with barely functional kitchens. Mrs. Summers (#1) used a small, dorm-sized refrigerator so her family caregiver had to shop for food everyday.
The purposive sample included Hispanic, Russian, Ukrainian, and Asian in addition to White and African American consumers. “Russian” consumers included those of Russian, Latvian, and Ukrainian ethnicity. Hispanic consumers included those of Dominican, Ecuadorian, Puerto Rican, and Salvadoran ethnicity. There was also a consumer of Vietnamese and Greek ethnicity.
Consumers, caregivers, and consultants mentioned the importance of translation for consumers. Mrs. Cirulis (#3) must have her family caregiver do all the communicating with her consultant. The consultant often sends a letter to the family if she wants to talk to them so they can have an English speaking member call for the information. Mrs. Perez’s family (#12) could not get their questions about the program answered until a Spanish speaking consultant was sent to their house.
Family caregivers were important because they shared culture and language abilities with the consumer. Several consumers also wanted non-family caregivers who shared their culture and language. Mrs. Tyshenko (#14) speaks English, but enjoys her friendship with her non-family Ukrainian caregiver who she describes as “full of culture.”
Family caregivers spoke of the cultural expectations of family care. Mrs. Svertlova (#7) does not understand the interviewer’s question about the qualities she looks for in a caregiver because her son explains that she does not understand that the “the situation could be different,” that someone other than her son could be her caregiver. Manny Gandia’s representative (#21) described herself as a “typical immigrant’s daughter” who cared for her mother and brother her whole life.
Consumers discussed the skills and qualities needed to be a good caregiver. Consumers felt that it was important to trust the caregiver especially trusting that the caregiver would not steal. Consumers also mentioned willingness to help, responsibility, reliability and dependability and “having the right attitude” as important for caregivers. Caregivers should enjoy helping people and not just rush in and then leave. Several consumers also felt that practical skills like cooking, cleaning, and doing laundry were important for caregivers to posses.
Patience in caregivers was important to consumers as was cleanliness. Additional qualities included personality and style of interaction described variously as being nice, cheerful, respectful, mature, polite, caring, kind, friendly, gentle, and having a “warm heart.”
Consultants vary in the amount of time and involvement they have with consumers. Several consumers required extensive involvement and help. Mr. Maimoni’s consultant (#4) had to help him one day when a caregiver did not show up and he could not get out of bed.
Some consumers described consultants as helpful and responsive. Mrs. Scholl (#5) said that her consultant was good at calling back when she had a question. One consumer had a poor relationship with a consultant because frequent changes in caregivers resulted in extra paperwork, which irritated the consultant. Mrs. Summers (#1) had difficulty contacting her consultant.
Several consumers mentioned language problems in interactions with their consultants. Mrs. Dunne (#2) was “lost in the shuffle” according to her consultant because she lives in a Hispanic neighborhood and was assigned a Spanish speaking consultant, but does not speak Spanish. The Moreno family (#23) described a conflict with an “American” lady and did not understand the program until they talked to a Spanish-speaking consultant. The Blanco family (#24) has difficulty calling the program offices because they do not speak English.
The most common problem discussed by consumers was late checks for caregivers.* Mr. Maimoni (#4) lost a caregiver because of late pay and many caregivers find it to be a hardship. Checks are handled by a fiscal intermediary. Some consumers reported that the fiscal intermediary was not responsive and had no staff that was able to speak Spanish. One consultant commented that the fiscal intermediary handles problems more quickly if called by a consultant rather than a consumer. Mrs. Jackson (#19) says that it is difficult to wait every two weeks for her pay. Ms. Grasso’s non-family caregiver (#22) describes a timing problem with submitting time sheets, which often disrupts her pay. Mrs. Taylor’s (#9) caregivers had difficulty cashing their checks at a bank because they did not have personal accounts there and Mrs. Taylor did not have enough money in her account to cover their checks. Angela Grasso (#22) was not told that she could handle her own finances when she started the program. She does not want to use the fiscal intermediary. A consultant mentioned that the financial statements were hard to understand, a problem also described by consumers.
Consumers described several bureaucratic problems with the program. A consultant mentioned that there were many problems in arranging worker’s compensation insurance for Mrs. Cirulis’ family caregiver (#3). Mrs. Moreno’s daughter (#23) must continue with a homemaker job outside of the program because she does not want to lose her state license. Mrs. Christofellis (#25) complained about the number of interviews and surveys required in the program.
A range of topics/themes emerged from interviews with consumers, their caregivers, and consultants. Major themes addressed included the family and community context of care, the value of the Personal Preference program, experiences with agency workers, and the skills and qualities of caregivers. Although these stories reflect a diversity of experiences, including problems with the program, consumers reported that they preferred the program to their previous arrangements.