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Perspectives on Care Coordination: Voices of Older New Yorkers

Prepared by:

The New York Academy of Medicine Center for Evaluation March 2010

Introduction

As the population of older adults—including the oldest and frailest—expands, the need for

appropriate services to support their optimal quality of life continues to grow. For those with complex

medical, psychosocial, and/or economic issues, care coordination appears to be key, facilitating

enhanced access to services and supports that promote greater independence and improved health and

well-being. The utility and value of services cannot be fully assessed, however, without incorporating

the perspective of those who may use them. Client (and potential client) perspectives can, for example,

clarify the attributes of particular services that are important, to whom, and for what reasons. Clients

may also describe processes for identifying and connecting to services that elucidate real-life barriers

and facilitators to care. Finally, the voices of clients can demonstrate the dramatic life changes that can

result when necessary services are provided or denied.

Based on qualitative interviews and focus group discussions with older New York City (NYC)

residents from ethnically diverse communities, this report brings the words and experiences of these

individuals into the statewide discussion of service capacity and needs, in general terms and also more

specifically as it relates to care coordination services. It is the third in a series of reports developed

and/or commissioned by the Social Work Leadership Institute (SWLI) at the New York Academy of

Medicine (NYAM), complementing the recommendations of the first two1

In the report, we describe the concerns of older New Yorkers, practices that sustain their quality

of life, their general opinions regarding aging in New York, the importance of maintaining independence,

and the challenges and opportunities that contribute to their general well-being. Our main focus is on

their descriptions of and perspectives on care coordination as a service that enhances independence

by offering a consumer

perspective on care coordination.

1 Toward the Development of Care Coordination Standards (October 2008) and Who is Qualified to Coordinate Care

(August 2009).

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and the capacity to age in place. Though told from the client perspective, the case studies of care

coordination also demonstrate many of the essential functions of a care coordinator, as well as the

knowledge, linkages, skills, and attitudes needed to perform those functions. We conclude with a

discussion of findings, phrased so as to be relevant to those interested in understanding and promoting

the care coordinator role.

Methods

This report is based on twenty five qualitative interviews and six focus group discussions (with a

total of forty-eight focus group participants) with older NYC and Westchester residents conducted

between April 2009 and January 2010. The research was conducted in collaboration with three

community-based social service organizations (CBOs) and two senior centers located in publically

subsidized housing facilities in New York City, and one community based organization located in Croton-

on-Hudson, a small suburban town in northern Westchester County. The New York City based

collaborators were: the Institute for Puerto Rican/Hispanic Elderly (IPRHE), Korean Community Services

(KCS), Lenox Hill Neighborhood House, Spring Creek Senior Partners, and the New York City Housing

Authority’s (NYCHA’s) St. Nicholas Houses Senior Center. The Westchester collaborator was the Croton

Caring Committee. The collaborating organizations - selected for diversity on a range of salient

characteristics, including client population, catchment area, and service model - facilitated recruitment

of and introductions to study participants and provided administrative support for study activities.

Study eligibility was limited to older adults residing in houses or apartments, including but not

limited to senior housing and subsidized housing. Because we were interested in descriptions and

perceptions of services, CBOs were asked to target their recruitment efforts to the frail elderly and other

clients that use aging-specific services. They were also requested to target equal participation from men

and women, to ensure adequate representation of gender-related experience. Separate samples were

recruited for the interview and focus group portions of the study so as to maximize the number of study

participants and to reduce the likelihood that responses might be biased by participation in previous

study activities. All interviews and focus groups discussions, except those in Korean, were conducted by

NYAM staff. Korean interviews and focus groups were conducted by bilingual KCS staff, who provided

detailed reports describing participant characteristics and responses. All interviewers and focus group

facilitators were trained in the study protocol, including a question-by-question review of intent and a

role play interview.

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Interviews and focus group discussions followed semi-structured guides (see Appendix 1) that

facilitated a balance between 1) consistency in questions and topic areas covered and 2) individualized

follow-up to particular responses. The focus group and interview guides covered similar content areas,

including background information, challenges to and supports for aging in place, residential preferences,

navigation of the health and social services systems, use of care coordinators and related staff, and

attitudes and perceptions of services received. Despite similarities in the guides, including the two

methodologies in the research protocol facilitated the collection of substantively different data.

Specifically, focus groups promoted open discussion of attitudes and perceptions, while the individual

interviews allowed for the collection of more extensive personal data and detailed “stories.”

Each focus group had two staff members present—one primarily responsible for facilitating and

the other responsible for note-taking. Focus groups were digitally audio recorded as a back up to notes.

Reports were prepared for each focus group, describing the discussion and highlighting major themes.

Interviews were conducted one-on-one, except in two instances where the participants were limited

English proficient and an interpreter was required. Interviews were also digitally audio recorded and

transcribed by a professional transcription service. Transcriptions were coded with pre-identified and

emerging themes using NVIVO, a software package for management and analysis of qualitative data. All

participants completed a brief (six question) survey prior to the interview or focus group, allowing us to

gather minimal demographic and service-use data for the full sample.

The research protocol was approved by the Institutional Review Board of NYAM. Study

participants received $25 for each interview or focus group, to show our appreciation of their time and

effort.

Participants Characteristics

Participant ages ranged from 57 to 96, with a mean of 78 (see Table 1). Females (52%)

outnumbered males (48%), especially among those interviewed individually (72% female vs. 28% male).

Diversity by race and ethnicity (28% African American, 20% Latino, 16% Korean, and 36% Caucasian)

reflects our purposive sampling strategy. Close to half of the participants lived in Manhattan (44%).

The remaining were dispersed across three boroughs (no participants lived in Staten Island) and Croton-

on-Hudson, a small community in upper Westchester County. Close to sixty percent of participants lived

alone; just over 16% lived with a child and just under 10% lived with a spouse or another relative.

Among those for whom data were available (n=20), the average time in their current residence was 20.5

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years, ranging from 2 years to 54 years. Eighty-six percent of the sample had Medicare and 34% had

Medicaid (just one person had Medicaid but not Medicare). Approximately 8% had neither Medicaid

nor Medicare. Forty-four percent of the sample—and 76% of those participating in individual

interviews— reported having help with household tasks.

Characteristic n % n % n %

GenderFemale 18 72% 20 42% 38 52%Male 7 28% 28 58% 35 48%

Age (mean) (78) (77) (78)55 - 64 years 0 0% 6 13% 6 8%65 - 74 years 7 28% 14 29% 21 29%75 - 84 years 11 44% 16 33% 27 37%85+ years 7 28% 12 25% 19 26%

Race/EthnicityAfrican American 7 28% 15 31% 22 30%Hispanic/Latino 5 20% 9 19% 14 19%Korean 4 16% 8 17% 12 16%White 9 36% 16 33% 25 34%

Residence (Borough)Bronx 0 0% 1 2% 1 1%Brooklyn 5 20% 7 15% 12 16%Manhattan 11 44% 22 46% 33 45%Queens 4 16% 7 15% 11 15%Westchester 5 20% 10 21% 15 21%Not Reported 0 0% 1 2% 1 1%

Lives With*Alone 17 68% 25 52% 42 58%Spouse 2 8% 4 8% 6 8%Child 2 8% 10 21% 12 16%Other relative 2 8% 5 10% 7 10%Friend 0 0% 1 2% 1 1%Roommate 0 0% 1 2% 1 1%Not Reported 2 8% 3 6% 5 7%

Public Insurance*Medicaid 15 60% 10 21% 25 34%Medicare 25 100% 38 79% 63 86%Neither Medicaid nor Medicare 0 0% 6 13% 6 8%

Has Help with Daily TasksYes 19 76% 13 27% 32 44%

Recruited throughCroton Caring Committee 5 20% 10 21% 15 21%Inst. for Puerto Rican & Hispanic Elderly 4 16% 8 17% 12 16%Korean Community Services 4 16% 8 17% 12 16%Lenox Hill Neighborhood Houses 4 16% 7 15% 11 15%NYC Housing Authority St. Nicholas Houses 4 16% 9 19% 13 18%Spring Creek Senior Partners 4 16% 6 13% 10 14%

* Total is greater than 100% because multiple responses were permitted.

Interview (n = 25) Focus Group (n = 48) Combined (n =73)

Table 1Characteristics of Interview and Focus Group Participants

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Findings

Quality of Life: Health, Housing, and Social Relations

Many study participants reported high satisfaction with their quality of life, despite concerns

around very significant issues, including economic and housing insecurity, sustained independence, and

ill health. The extent to which their positive attitudes are representative of a wider population of older

New Yorkers—or, alternatively, reflect a selection bias—cannot be determined. However, evidence of

resilience was common. Olga,∗

All my problem for my health, because I too much was sick. I have too much operation, I have too much broken, I have enough trouble, but we live very good. I have no problem with my life, no, no.

an 88 year-old Russian immigrant, who has had multiple surgeries,

commented:

Betty, a 77 year-old African American woman, had a similar attitude:

The day might come that I have any complaints, but I don't have any complaints about being old, I like being old… What have I got to complain about? Struggling up and down some stairs?

David, an 82 year-old Korean immigrant, was also optimistic:

I am often told that I look younger than I am. Living with the feeling of happiness is the key of longevity! I have lived my life for 82 years, which is good enough, I believe.

Despite their positive attitudes, participants managed chronic and serious medical conditions

that affected their daily lives and their ongoing routines. From diabetes and arthritis to broken bones

and cancer, most experienced increasing frailty, which impacted on their activities of daily living,

including their ability to maintain a home, to bathe, and to feed themselves. Many had impaired

mobility, limiting even nearby travel and necessitating the use of equipment ranging from low-tech

canes and walkers to electric wheelchairs and go-carts. Even the most physically fit took multiple

medications daily.

Housing insecurity also impacted on a number of study participants. Many considered their

housing to be too costly for their budgets, especially when living alone (as most were) and without

assistance from children or other family members. This concern was shared even by those in publically

owned and subsidized housing. Many were unsure of where they would live in the long term; a few

expressed more immediate concerns due to current difficulties meeting housing costs. One focus group

participant reported being three months behind on his rent; he was unsure of how long he would be

∗ Pseudonyms are used throughout the report. No actual names are included.

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able to remain in his current apartment, which he had occupied for 18 years. Topu, an 88 year-old

Korean-American male living in a senior apartment, commented:

It is too expensive. I get $755 from the government but after I pay [$650] rent, I have $100 left. I know I get $200 food stamp, but it is still very difficult. I don’t eat lunch. I can’t afford to eat lunch on Saturdays. I can’t believe $755 is being counted as an income. I live with $300 a month.

Seo-young, who was born in Korea but has been living in the US for 40 years, has had the rent in

her senior housing raised by 25% in three years. Widowed 18 years ago, Seo-young has no current

source of income. She knew of many people that had moved elsewhere because the of rent increases.

She felt that the state government “doesn’t care if old people like us die in the streets.”

In many individual interviews and focus groups, seniors described the connection between their

housing and their quality of life. Those living in senior housing were largely satisfied with its quality.

They found their residences to be clean and secure, and many appreciated not having to do the routine

maintenance necessary when one owns his or her own home. However, Theresa, a NYCHA housing

resident, complained of problems with pests, and having to pay out of pocket for exterminators. She

said that she and all her neighbors had to discard their furniture due to bed-bugs, a recent City-wide

problem. In fact, the only guest seating in the living room at the time of the interview was a plastic

chair; the interviewee sat in her motorized wheel chair. Many participants’ housing frustrations

focused on cost (as noted above) and long waiting periods before placement in subsidized senior

housing. Five participants reported an average of 4.8 years on waiting lists, with the longest wait being

8 years.

Compared to New York City residents, the housing concerns of Westchester residents were

more pronounced. The senior-only housing complex that was home to two interviewees, was barely

accessible, with a steep hill separating the residences from stores, public transportation and other

amenities. Built as garden apartments in relatively small buildings, hills also separated residents from

visiting friends and acquaintances in other parts of the complex. For home owners, real estate taxes

were high (despite senior exemptions) and the need for maintenance, including lawn care and snow

removal, is ongoing, physically demanding, and –according to participants – required by town ordinance.

Older people are forced to pay for such services. Although no specific problems were reported,

participants noted being wary of the fees and reliability. Furthermore, for suburban older adults,

alternatives—in the form of senior housing or accessible buildings—are few. When they need to sell

their houses, older suburban residents are likely to move significant distances (most often where their

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children are) despite their preference to remain in the community that they’ve considered home for

decades.

Housing retained great significance to participants because of its association with independence

and autonomy. Although many of the seniors receive services in their homes, nearly all were wary of

residences with higher levels of care, such as long-term care facilities, assisted living, and nursing homes.

Many who mentioned nursing homes equated them with an unacceptable loss of independence and

privacy. When asked if she might live in a nursing home someday, Olga, the 88 year-old Russian female

cited previously, commented: “Better I am dead… Never in my life. If I can't do something for myself, I

better die, no, no.” An interpreter explained her follow-up remarks: “She wants to take a bath whenever

she wants to. If she wants to go for a walk, she can do it.” Alternatively while Gladys, a NYCHA housing

resident, was reluctant to move to a nursing home, she had already picked the one she would be willing

to move into if necessary, because “the place was clean. The place wasn't smelling. The staff was nice.

[Residents] receive food, and it was well kept and managed, and [the staff] seem to care as much as they

can today.”

Although a desire for autonomy was common, it was frequently balanced with the

overwhelming fear of becoming a burden to family members, particularly children. Although most

participants with children reported talking with them or seeing them frequently, multiple respondents

said that they held back in asking their children or other family members for help when needed, even if

the family member offered. Marelys, a 74 year-old Puerto Rican woman currently living in Harlem, has

severe arthritis and reported month-long paralysis three years ago. She maintains close connections to

multiple family members and reports getting significant financial assistance from her children. She

explained:

I tell my daughters that if I can’t do anything they should help me find a place where I can live, like a senior center. I don’t want to live with them, they would like me to but… they work and I don’t want to be a burden to them.

Help that was not considered to be burdensome, including shopping, cooking, and visits, was more likely

to be welcomed by participants.

It should be noted that most of the participants remain active in their communities, including

regular attendance at senior center activities. In addition to the family linkages alluded to above, many

described close ties to older friends and neighbors, offering companionship and mutual assistance

accessing needed services. While Theresa, a NYCHA housing resident, did not have any professional

assistance in her home, she described the reliability of her friends whenever she was in need: “I have

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some friends I can call - lickity-split and they be right here.” In fact, during the interview, a man stopped

by to offer to check her mailbox, since she lived on the 11th floor and it was on the first. Sixteen of the

twenty-five interviewees reported that they help others and/ or volunteer regularly; six volunteer

exclusively for the benefit of other older adults. With roles that include dance class instructor,

interpreter, food service worker, agency director, clerical worker and driver, participants took pride in

their volunteer work, describing it at length.

The older adults participating in this study evidenced significant concerns around their health,

housing and autonomy, combined with optimism and continued social engagement that seemed in

sharp contrast to the problems they faced. It is in this complex and contradictory context that the need

for, and use of, care coordination and related services is best understood.

Case Studies of Care Coordination

Participants in this study reported significantly different experiences with and expectations of

their care coordinators. These differences were evident in descriptions regarding first contact, initiation

of care, and perceived quality of services provided. Yet consistently, care coordinators educated their

clients about the services to which they were entitled and helped them enroll in and manage a wide

variety of benefits. In doing so, they were often perceived as “family,” working collaboratively with or

even substituting for, support from children and other relatives. Below, we describe the paths through

which the older adults in our sample learned of and received support from care coordinators, as well as

the multiplicity of services that care coordinators provided to them. As most care coordinators are

social workers by training, the participants often referred to their care coordinators as their “social

worker.” We include this term in their narratives, yet recognize the distinct roles that social workers

serving as care coordinators play. We also recognize that some of these “social workers” may not have

been trained as social workers, but are considered as such by the clients they see. Because many study

participants were frail elders, they placed great emphasis on the role these individuals have taken in

facilitating and managing health-related and other services, including direct care, insurance, and

medications.

FROM MEALS ON WHEELS TO MEDICARE SUBSIDIES

Betty is a 77 year-old African American woman living with her daughter-in-law in

Harlem. Approximately six months prior to her interview, she called the NYC information line in

order to inquire about Meals on Wheels, a food program for the elderly. They connected her to

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the Department of Aging, which connected her to a case management agency and ultimately a

care coordinator. As a retired nurse on a fixed (and low) income, she qualified not only for

Meals on Wheels, but for other services as well. Her impression of her care coordinator, Tina, is

very positive. She says:

Tina, the social worker, she is a blessing because there are things that I can get that I never even dreamed of applying for because I never had to apply for anything… Whenever I need anything I call her. I’m having fun with all this.

Among the many benefits that she learned of is a subsidy for her Medicare co-payments. Betty

was paying 20% of her Medicare costs, which amounted to $300 a month. With a fixed income

of $1,100 a month, this posed a serious burden. Yet with several chronic illnesses, including

arthritis, asthma, and diabetes, she required ongoing medical attention. Betty was thrilled to

learn about this benefit, as the subsidy significantly reduced her out of pocket costs. Not only

did Betty receive a call from her care coordinator every two weeks, but when she visited, she

“sits here for hours” socializing.

“LIKE SAVING MONEY IN THE BANK”

While Betty began receiving care coordination services through her own initiative, many

in our sample received services after having a major medical procedure or crisis. Charles is an

81 year-old African American veteran who lives alone on the Upper East Side of Manhattan. He

started receiving the services of a care coordinator in 1995 when he was discharged from a

hospital following surgery for prostate cancer. He recalled how the hospital based social worker

arranged for another social worker to manage his home care and other services once he left the

hospital. He feels that it is important for him to receive care coordination services because he

lives alone:

You see in some cases, they have other family always, you know, in their home with them. Like they have a wife or they have their children or someone there living with them, besides themselves. But you see I’m alone and the aides come and help me.

Charles can manage many things on his own, like preparation of some of his meals. However,

he appreciates that the care coordinator constantly asks him if he needs anything else, and

offers to arrange for more services. He explained:

They keep asking me all the time, reminding me, ‘you need more help, you want more help?’ Which should make me feel good too, that I know that it's there.

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Just like I'm saving money in the bank, where you got a savings account, you got a spending account, you know?

HELP IN A TIME CRISIS

Cathy is a 67 year-old Caucasian woman who shares an apartment with a roommate on

the Upper East Side. A care coordinator at a local senior center first helped her to resolve an

insurance “crisis” and then connected her with a range of new services. The insurance crisis

occurred during a very difficult time in her life. She had recently fallen, breaking her shoulder

and arm, and was diagnosed with an age related illness making her “bones fade away.”

She had lost her jewelry business due to the economy, and claimed that she had reached a point

of being suicidal. It was in this state of mind that she phoned her insurance company to resolve

a problem that had prevented her from receiving her medication. She explained:

I was calling my medical coverage because they weren't paying the doctors, and I was getting a real run around. And finally after three and a half hours of getting switched back and forth to different people and repeating the story I said, ‘I can't take it, if you switch me one more time I'm going to blow my brains out.’ And within two minutes there were policeman at my door, forcing me to go to a psych ward. A locked psych ward. And that's where I spent the night. Yeah, it was horrible. It was a horrible experience, because everyone was crazy, I mean really crazy, like banging themselves in the head. And they wouldn't let me out until they closed the place and after that I called the center. An attorney here, helped me straighten everything out, got my insurance straightened out, my bills were paid, the doctors were able to give me my medications and stuff. They rescued me from being just like floating out there, with no one to help… I have a case manager. She helps me tremendously to straighten out my health insurance, and give me information on affordable housing. Just knowing that somebody is there that I can call if I have questions. I found the center very, very helpful in the transition from working to not working.

William, an 83 year-old African American male living on the Upper East Side, recounted

a similar story of desperation and the ways that his care coordinator helped resolve his medical

and housing expenses. Following an operation, he found that he could no longer live in his fifth

floor walk-up apartment. He applied and was able to move into the subsidized housing above

the senior center where his care coordinator works. Having moved into the building, he found

that he was able to rely less on his large extended family, and develop more of a social life on his

own.

I'm a songwriter, and I have a small catalogue, but I had some operations, and I had one that was so much money that I didn't know what to do. I was going out

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of my mind. And one of the social workers associated with the center here, he contacted a group called Music Cares. I never heard about it before, and with all the thousands I owed I didn't even know about it. They got the whole thing cleaned up. Everything. Just to help. There are so many things I could go on and on about it. I'm very pleased to be here. I've got good friends, and I'm adjusting to the environment, and also adjusting to my own self. And I'm glad to be here… I found something else about them, that it's more of a family in many ways when I'm around my own peers.

Similar stories of how care coordinators are helpful could be found among many study

participants. Collectively, the participants in a focus group of seniors at Spring Creek, a

subsidized private housing complex could name their care coordinators and social workers, and

attest to their availability and helpfulness. When asked to specify, they said, “Whatever you

need, they can straighten it out.” They noted that there are interpreters for Spanish and

Russian speaking residents, as well.

MANAGING TRANSITIONS

Rosa is a 75 year-old homebound Hispanic female who has lived in a subsidized housing

complex in Brooklyn for twelve years. She has health problems that go back to her childhood.

She met her care coordinator, Clara, by volunteering to care for the plants in the senior center.

As someone who is illiterate, she relies on her care coordinator to read her mail, make her

appointments, call her doctors, and provide translation services. When asked to describe

Theresa, she explained, “She’s like my daughter.”

Rosa had recently returned from a nursing home, where she spent five and half months

recovering from a fall in her home. She was happy to be in her home again, though she required

the support of a home attendant, nurse, and weekly physical therapy, as well as the attention of

her two children. Her care coordinator, Clara, helped manage her transition from the nursing

home, including the many complications impacting on her continuity of care. In addition to the

medical aspect of her injury and pre-existing chronic illnesses, Rosa faced challenges with

maintaining her social security income and managing her prescriptions during the transition to

and from the nursing home. Theresa, who served as her interpreter during the interview,

explained the complications with the pharmacy, and her own role assuring that Rosa’s health

was not compromised due to lapses in communication and planning.

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To summarize, Rosa had been discharged from the nursing home with only three days of

a daily prescription for diabetes, when the pharmacy claimed that it had issued thirty days of the

prescription. Rosa realized the discrepancy as she approached the weekend without her

medication. Theresa managed to get confirmation from the pharmacy that the medicine had

been issued to the nursing home, and that the nursing home in fact had the balance of the

prescription. She then worked with Rosa’s daughter, who went to the nursing home to pick up

the balance and then take it to her mother. Theresa explained, “If we weren’t here, she would

have gone the weekend without her medication. She cannot stop her medication.”

While the Westchester participants did not have ongoing access to professional social

workers, they did receive similar assistance from the non-profit community based organization

that partnered with NYAM in conducting this research. When hurricanes destroyed her home

in Florida, Jenny, a 70 year-old Caucasian woman, was forced to evacuate, receiving just $328

from FEMA to pay for clothing and small appliances that had been destroyed – nothing for her

three bedroom, two bath home. She moved to Westchester, closer (although not close) to her

two daughters. Subsequently, she learned that she had cancer, and was required to undergo

chemotherapy. As a person that had always solved the problems of others, Jenny felt like the

sequence of events robbed her of her identity. She explained:

For the first year, the surroundings, the lifestyle, was completely foreign, like being in a play. “What is my character supposed to be doing?” I did not have a clue, you know? But then I moved in here in February and in November I had an episode where I had trouble breathing, and I couldn't walk up that little hill. I went to the doctor, he took a blood test, said come back, call him… So I was only here from February to November and found out I had cancer... I'm trying to answer whether I feel at home yet... I would say, just this past four or five months, I've started to feel that this is my home… [Croton Caring Committee] has been a great contributor because besides getting me to and from the doctor for chemo and all, we also have the luncheons once a month. So that gets you out and into a social environment which has been a huge help in making a transition you know, mentally. Little did I know how wonderful [Croton Caring Committee] was because chemo was a little bit traumatic. But they not only drove me there, the person stayed there with me. And then brought me back home and having someone there other than, you know, the cab driver or having that person there that was really unique and it helped a lot.

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MANAGING PAPERWORK

Joe, an 85 year-old Caucasian male, resides in the same subsidized housing complex in Brooklyn

as Rosa and also benefits from Clara’s care coordination services. He has lived in the complex

for nineteen years, and has lived alone since his wife passed away four years ago. He relies on

his care coordinator to manage his health insurance, housing, food stamps, and veteran’s

benefits. He explained:

She helps me fill out my insurance papers every year for recertification and other things that might arise, you know. Some other problems that might arise that I, myself, cannot handle. I would go to her and she would take care of it and help me.

One such problem arose when his wife passed away. The Human Resources Administration

made an error in their documentation, recording that Joe had died, rather than his wife; his

Medicaid insurance was therefore terminated. Theresa accompanied him to the Medicaid office

to correct the problem. However, without active insurance for three months, he had to pay

$200 a month out of pocket to cover his prescription costs. Theresa still accompanies him to the

Medicaid office and helps him with recertification on occasion. He says,

If I have to do all the paperwork myself, you would have to come and visit me in a nuthouse, cause I would be nuts.

Lucy, an 85 year-old Hispanic female living on her own in a subsidized apartment in East Harlem,

relies on the social worker in her building for similar issues. She explained:

She helps us fill out all sorts of applications, for our health insurance, for Medicare. She helps us read our letters since sometimes some people can’t read in Spanish or English. She also helps us make and cancel doctor’s appointments. Basically we can communicate with the outside world thanks to the social worker. It’s a very good service for people like me who live alone, especially those who can’t read. It’s almost like having a family member there for you.

Perceptions of Care Coordinators

While most participants had positive things to say about their care coordinators, two had

worked with multiple coordinators and held preferences for some over others. Both preferred care

coordinators who were personable and responsive. John, a 65 year-old Caucasian male living in

subsidized housing on Roosevelt Island, began receiving home health attendants due to the attention of

his first care coordinator, Ruth. Ruth received a promotion and left her position, and John was assigned

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a new care coordinator. He described Ruth as a friend, especially compared to her replacement. He

explained:

She’d call me up, ‘John, how you doing? Just thinking about you.’ I mean, just a real sweetheart of a young lady. I saw her maybe three times a year, whatever it was. But just, there was a connection there. Now that Ruth is gone, they’re going to set something up. I have a [new] social worker, she came in just last week and talked more to the aid, and then [said], ‘everything going okay?’ Boom, boom, goodbye. Ruth would come and sit down, ‘how you doing, what’s going on?’... It’s just more a conversation versus ‘this is what I have to do,’ in and out in 15 minutes. But again, everybody’s different.

Similarly, Nancy, a 69 year-old Caucasian woman living on the Upper East Side, has had sharply

contrasting experiences with different care coordinators. She recalled:

The first social worker, case worker, whatever you want to call it, I got was Carol. And after about a year or so, Carol got this fabulous promotion. I said, ‘My baby! My baby is leaving!’ You know I was so proud… And I had one I wasn’t crazy about. She just didn’t see me. She couldn’t read me. Then another one I had got another lovely promotion… Now, I have a new social worker, who’s been with me for six years.

Nancy has worked with care coordinators ever since becoming chronically ill in 1998 with

emphysema. While breathing oxygen though a tube during the interview, she revealed a hand drawn

chart on which she meticulously marked every hospital stay in the past eleven years. She manages to

remain in her home with the assistance of a variety of home attendants, nurses, and rehabilitation

specialists that are paid through Medicaid, and she relies on her care coordinators to assist when there

are problems with the services. Recently, she began asking her care coordinator to assist her with a new

home attendant agency. She feels the home attendant provided to her is rude. However, she is finding

her care coordinator to be unresponsive. Carol complains:

I know she’s busy, but at least I want her to take five minutes out of the day to call this woman [at the new home attendant agency]. I need [her to] write me an e-mail about it and just answer me. Right now it’s important, because we’re going over to the other agency.

Lily, a Westchester resident, also has concerns about the social worker coordinating her care.

She feels the social worker is aligned with the interests of building management and has tried to force

Lily to make unwanted lifestyle changes—suggesting nursing home placement if she doesn’t . Lily said,

“I just threw her out one day. But she keeps coming back like a bad penny.”

Special Needs of Older Immigrants

Beyond the compliments and complaints about individual care coordinators, this research

revealed that care coordinators are not utilized by all of New York’s older adults. Compared to non-

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immigrants, the immigrant participants in our sample were significantly less likely to receive the services

of a care coordinator and more likely to have misconceptions about care coordinator roles and

functions.

A focus group conducted with eight Hispanic men and women, ranging from 57 to 75 years of

age, revealed that while most sought assistance from social workers in a local senior center, none had

been personally assigned a care coordinator. Confusing care coordinators with insurance enrollment

counselors, many believed that care coordinators were related to or even worked for health insurance

companies. Given the degree to which care coordinators do address health insurance issues, such

misconceptions are understandable. However, many also believed that care coordinators are only

available to those who are seriously ill. Therefore they felt that they would have greater need for care

coordination services later in their lives. A focus group with eight elderly Koreans, ranging in age from

68 to 81 years, revealed a similar pattern of self-reliance in the coordination of medical care, insurance,

and other benefits. Participants were proud of their independence and ability to live and manage on

their own, though they expressed difficulty accessing affordable medical care and health insurance.

They viewed senior centers in social terms, as places where individuals could come for a free meal and

to socialize with their peers, and feared that social workers and care coordinators would charge them

steep fees for their services.

Inadequacies in Service Delivery

In general, it was apparent that most participants in our sample were very satisfied with the

care coordination services they were receiving; their infrequent complaints focused on the need for

friendly and attentive interactions. However, there were clear disparities in access to care coordination

services in both the suburban sample and the sample of inner-city NYCHA residents in mixed age

housing rather than senior-only housing. In the suburban community, gaps in services were met by a

largely volunteer, community based organization. Although well supported locally and seemingly

sustainable, its presence and breadth suggests limitations to the publicly available, county based service

delivery program. Certain NYCHA residents in mixed-age housing appeared to have the most limited

access to common senior services, such as visiting nurses, social workers and care coordinators. For

example, Theresa is a homebound woman who relies on the reportedly unwelcome company of her

granddaughter because she knows that she should not remain alone at night due to her difficulty

moving around her apartment. When asked if she has difficulty getting to her doctor’s appointments,

she admitted that though her doctor would like her to go once a month, she only goes when she feels ill.

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Upon learning that she may be able to have a nurse visit her in her home instead of making regular trips

to the doctors she said, “no kidding?” Several other NYCHA participants received services from home

attendants and visiting nurses, but did not have the assistance of care coordinators. In such cases they

relied on the assistance of their home attendants or relatives when faced with difficulties receiving

medical or social services. The extent to which poor access to services among NYCHA residents reflects

a sampling bias or some other factors cannot be determined in a study of this scope.

Gaps in Direct Services: Participants raised several concerns related to the direct services they

were receiving, primarily the in-home health and housekeeping assistance. These concerns are noted

here because of the role care coordinators have in linking clients to these household services, and the

ongoing responsibilities of care coordinators when such linkages prove unsatisfactory. The most

common complaint among participants was dissatisfaction with their current in-home caregivers,

including health aides and home attendants. According to one participant, “Her role is to keep the house

clean, which she doesn’t.” Another participant complained that her home attendant just “sits there and

does her Sudoku…they don’t have the basics anymore.” Oftentimes, when citing their current help as

inadequate, participants would reminisce about former in-home aides who were more diligent and with

whom they had a closer connection.

It is clear that personal connections between caregivers and clients increases satisfaction, and

some participants mentioned the importance of getting to know their in-home helpers. Charles, the 81

year-old Manhattan resident described in a previous section of this report, detailed,

The girl that’s from VNS…I ordered this big sandwich the night before…I said all right, come on, will you share it with me? ‘Cause she was a delight. There was this - I had a human conversation. I had a grown-up conversation. Participants felt as though they have to monitor their in-home help. John, a 65 year-old resident

of Roosevelt Island, commented, “she’s taking advantage when she comes in and puts the TV on first

thing while she’s doing her cleaning. I mean, you’re here to work. This is not an entertainment house.”

Another concern is that their home attendants show up late and sometimes not at all. Older adults

receiving in-home care feel they play the dual role of client and supervisor. When the work is

considered inadequate, this contradiction in roles puts a strain on the care-receiver/caregiver

relationship.

When asked how participants resolved dissatisfaction with in-home caregivers, most responded

that they have requested replacements. Many have had several different home attendants, in hopes of

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finding the right fit. Nancy claimed to have gone through “hundreds” of home attendants, with little

success. According to John, the 65 year-old man cited above, an alternative to staff replacement is to

instruct home attendants on how to do a satisfactory job.

I took him outside the door and said, “Whose apartment is this?” He said, “Yours.” I said, “Okay. My apartment, my rules. Do you know what my rules are? See the yellow piece of paper on the refrigerator? That’s what you have to do, my way, not your way.”

Independent of individual characteristics, including reliability and congeniality, the structure of

home care presented additional problems for participants. For example, in-home services were

provided during limited hours, despite the need for assistance in the early morning and/or evening.

Topu, a Korean resident of Flushing stated, “I can’t cook breakfast anymore. I hope someone comes in

the morning to cook breakfast and remind me to take medicine.” Similarly, as a position with general low

wages, home care agencies may lack a pool of applicants from which to draw appropriate help. Several

participants were unable to fully communicate with their in-home help due to language differences.

John stated, “She [is] Spanish. One of the problems is that there is a failure to communicate.” Charles

specified that his home attendant “mumbles” making conversations difficult, as he—similar to many

older adults—has poor hearing.

Discussion

The older adults that participated in this study evidenced remarkable capacity, resilience, and

generosity, while also describing significant medical, psychosocial and economic concerns. Most had

family, friends, and neighbors that provided some level of assistance and support. Care coordinators,

however, played a key role in connecting participants to valuable programs and services that,

unfortunately, would have been difficult for them to access otherwise. Specifically, the care

coordinators described in this study:

• Linked low income older adults to entitlements and subsidized services - including senior

housing, Food Stamps, and Meals on Wheels - that facilitated improved quality of life and a

reduction in day-to-day expenditures

• Served as the go-between, connecting an individual’s health insurance, health providers,

pharmacies, and hospital, to ensure access to services, equipment, and medication needed

for the management of medical conditions

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• Served as troubleshooter when lack of information or errors threatened access or continuity

of needed services

• Completed application and recertification forms and reviewed other documents related to

public services, all of which tend to be complicated for young and old alike

• Facilitated the transition from hospital to home, limiting complications that may occur after

discharge

• Helped to reduce social isolation, depression, and feelings of dependence

Similar to the direct services they promote, care coordination services were vital to study participants,

increasing their functional independence and enhancing the likelihood that they would continue to live

in the houses, apartments and neighborhoods that they considered home.

Appendix

SWLI Care Coordination Individual Interview Protocol – Page 1

The New York Academy of Medicine Social Work Leadership Institute

Individual Interview Protocol

Care Coordination: Older Adults Navigating Health and Social Services

Thank you for participating in this interview. As you know, we want to learn about the supports, barriers and challenges that older people face when living independently and navigating the health and social services system. In particular, we would like to know what supports you utilize, how you navigate the social and medical services systems, and challenges you face in doing so. We hope that the information we collect will improve knowledge of how to best provide support for older adults. We have talked to social workers and others that work with older adults but it is most important that we hear from you about what you think is important. As noted in the consent form, your participation is completely voluntary. You do not have to be part of the interview and you do not have to answer any question you do not wish to answer. You may leave at any time. The information shared here will be kept confidential. A. Supports

1. I’d like to start off with you telling me a little bit about yourself.

o Where did you grow up? o Where are you living now?

i. Do you live alone or with someone? o Do you live in your own home? Residential community? Assisted living facility? o Do you have any children?

i. How involved are they in your life? o Do you have any medical conditions that limit your ability to live completely

independently?

2. Do you get any services or belong to any programs that help you in your home - like housekeeping, home-healthcare, visiting nurses programs, church or community group services, or meals on wheels?

o What kind of services do you receive? o How did you learn about them? How did you get connected to them? o Was it difficult or easy to arrange for them? o How do these programs work – i.e., How often do they come, do you have to pay

for them,) 3. How do you feel about these in-home services? Would you change anything about them if

you could?

4. Ok, now let’s talk about services outside of the home – do you use any supportive services outside of the home, such as adult day programs, senior centers, or other community services?

o What kind of services do you use; what kinds of organizations provide the services? o How did you learn about them? How did you get connected to them?

5. How do you feel about these out-of-home services? Would you change anything about them

if you could?

6. Ok, thinking now about all the different kinds of services and programs you use, either in the home or outside of the home, how do you keep track of them?

o Do you keep track of them yourself? Is it difficult? o Does it require a lot of your time and energy to manage them?

SWLI Care Coordination Individual Interview Protocol – Page 2

7. Are there any services or programs that you think you need, or you would like to receive, but do not?

o Why don’t you get these services?

Prompts: - Not available or do not exist - Unsure how to access them - Too expensive

B. Coordination of Care

8. Have you ever gotten help from a case manager or care coordinator – this would be someone who helps you to get all the services you need and to keep track of them? Can you talk a little about this?

o How did you connect to the case manager/care coordinator? o Can you talk about the services they provided? o In what ways was (or is) this helpful? o What would you change about the services provided?

9. Now I’d like you to think about a time when it might have been helpful to have someone like

a case manager or care coordinator… maybe after an illness or accident. After these kinds of situations, most people need some extra help. Have you had an experience where you needed extra help? If so, can you tell me about it?

o For example, did anyone help you with your medical needs? o How about your household needs – like cooking and cleaning? o Did anyone help you with travel, like to doctors appointments? o Were you ‘in charge’ or was someone else? Who?

10. Finally, to end this section of the discussion, I want to ask about the future.

o Do you think you will need supports or services in the future besides what you have now?

C. Final Questions:

11. First, if you could send a message to the government about what you really need as an older adult living in New York, what would you tell them?

o Do you have any messages specifically related to the services that you use – or would like to use?

12. And finally, did I miss anything? Is there anything you would like to add that may help me

understand more about this? Do you have any questions for me?

Thank you for your time….