Citizens' Coalition for Nursing Home Reform: An Interview with Elma Holder

The National Citizens' Coalition for Nursing Home Reform was founded in 1975 by 11 citizens groups, including the National Gray Panthers and Michigan Citizens for Better Care. The Coalition, headquartered in Washington, DC, coordinates the work of more than 278 state and local member organizations and almost 400 individual members who are concerned about improving the quality of care for nursing home residents. Seventy-four participating organizations are in the South. 

In addition to providing resources, technical assistance, and information to state and local advocates, the Coalition has struggled to maintain consumer and resident input into nursing home regulation development and enforcement. In 1981-82 it was instrumental in organizing widespread public opposition to Reagan administration plans to weaken the regulations and inspection requirements governing nursing homes that receive Medicare and Medicaid reimbursement. The resulting outcry led to a moratorium on changes in the regulations until after completion of a study by the National Institute of Medicine, due in August 1985. The Coalition has published a Consumer Statement of Principles for the Nursing Home Regulatory System, endorsed by 40 national organizations, as input into that study. 

In addition to publishing special reports, the Coalition has a quarterly newsletter and a periodic advocacy journal, Collation. 

In this interview one of the Coalition's key organizers and its director Elma L. Holder, 43, talks to Janet Wells about the group's concerns and about organizing nursing home advocates in the South. 

What are the primary concerns of the National Citizens' Coalition for Nursing Home Reform?

All of our work revolves around quality of care. Key elements of this work are informing and organizing people to maintain the minimal standards for nursing homes. In most states, the standards of care established by the federal government [regulating nursing homes that accept reimbursement for Medicare and Medicaid] are the minimal standards of care. We don't have really high standards written into regulations. Mental health services are practically nonexistent in nursing homes, and there are almost no rehabilitative services at this point. But we do want to maintain minimum standards, and we're not yet maintaining them across the country. 

You seem to be saying that the level of care in most nursing homes is deficient. Why is that so?

The industry, of course, will always claim that they don't have the money. So that is a major issue we're looking at: What does it really cost to get good care? If it does cost more to get good care, my feeling is that our groups would support more public money for nursing homes. But state legislators are reluctant sometimes to support more money for nursing homes when the funds may be going into profits instead of actual care. There's no question people are making good money off the system — the whole corporate push into nursing homes is reflective of that. 

We do all kinds of work on regulations and different programmatic issues related to nursing homes, but we know the real power base relates to reimbursement and financing. So we're developing a program of education for consumer advocacy groups and ombudsman programs about reimbursement issues. [The 1978 amendments to the federal Older Americans Act (OAA) require every state to appoint a Long-term Care Ombudsman to investigate and resolve complaints made by or on behalf of nursing home residents. One of the responsibilities of the ombudsman is to organize volunteers statewide to assist in this mandate. The state ombudsman networks have become an important component in the nursing home reform movement.] The reimbursement system is real complicated — there are a lot of hidden benefits to owning nursing homes in terms of taxes and depreciation — but it's not as complicated as it seems, if you just sit down and study it. 

You have nursing homes in the South that are owned by big corporations headquartered in Minnesota, Colorado, or California, and your power to influence whatever happens in that facility is lessened considerably. It's important for people to understand the corporate structure and know how to influence change. 

Is race discrimination a problem in nursing homes?

One of the issues that is of concern, especially in the South, is discrimination against Medicaid patients, and race discrimination follows from that. There's no question that people who are eligible for Medicaid are discriminated against because facilities want to get private pay patients into their home to help, they say, make up for the low fee they are given through the Medicaid program. 

About three years ago, the ombudsman network in Florida did a survey where they tested this out. They discovered that although the nursing homes said there were waiting lists for beds when they called about placement for a Medicaid recipient, when they called back and said they had a private pay patient, they were told beds would be available immediately. Because of this, a lot of nursing homes in the South (as in other places) are almost exclusively white. 

You hear this is because blacks don't live as long, which is certainly true statistically, and because blacks take care of their own. Well, in fact, minority groups will tell you they often take care of their own because they have to. They can't handle the problems any better than anyone else if their relatives become severely disabled or have costly health problems. 

The Coalition has organized primarily to get better care for residents, but you have also spoken out on employees' needs, haven't you?

We just had a national symposium in Florida on quality care in nursing homes. There were 17 nursing home residents from around the country there. One was a woman from Valdosta, Georgia — Bessie Hale — a sweet country lady who looks very much like my southern Arkansas grandmother. Her key concern was that the workers are mistreated in nursing homes. That they don't have enough money to take care of their families, that they don't have the supplies they need. 

We still have mostly untrained workers. There's a tremendous amount of turnover because of a lot of factors — low wages, lack of support, lack of good supervision. Aides often leave the nursing home because they don't have the supplies and equipment they need in order to deliver good care. 

If homes are short-staffed and staff members have to take care of 15 patients when they really should be taking care of seven, their burnout potential is pretty strong. 

How do you feel about efforts to unionize nursing home workers? 

We would support anything that's better for the workers — whether it be union activity or whether it would be some government activity which would increase their wages — if it would help them give better care. Some union work clearly goes beyond just getting better wages; part of their emphasis is on providing better quality care. I don't think there's any question that the campaign conducted against Beverly Enterprises has had some effect on Beverly's willingness to focus more on quality care. [See story, page 113.] The fact that unions have investigated and found a pattern of poor care in corporate-owned homes is definitely one of those outside pressures that makes the corporations behave in a better manner. 

So I think the unions have done some very good things. But I think they have a responsibility to make sure that whatever they do translates into better care for residents. 

Is it more difficult to organize nursing home advocates in the South than in other parts of the country?

I would say that organizing is different in the South in some respects. We probably have as strong a network of people and contacts in the South as anywhere. But the process of educating around advocacy issues has been slower in some ways because some people are fairly conservative in their politics. They're rural people, usually, people who want to do something about the problems because it's just not right for those things to be happening. 

You do not start fighting the big corporations because the corporations are doing a bad thing. You start out because people are suffering and having problems and you want to organize yourself in the best way to do something about that. It's a low-key approach to advocacy, which I support along with more aggressive approaches. 

Are most of the people who participate in your network in the South friends or relatives of nursing home residents?

Yes, but that's where your strength lies. By the time people get involved in an ombudsman advocacy program in the South, most of them are in a position emotionally where they want to do something about problems. What I like about the South is that the reasons for advocacy seem to be more basic. They are: I have a mother in a nursing home who's hurting, or, I have neighbors who go into this nursing home and it's not providing good care. And therefore I'm going to do something about the problem. 

What our networks have to do is just build on that and hope we help the person see that there are strategies to change that problem. We always say that the basic core of advocacy is just a friend reaching out to help another friend. First you reach out in a friendship way, and then, once you confront the system, you realize that you have to sharpen your skills to confront administrators — to know what you're talking about on the regulations — and communicate with residents. 

We help those "friendly visitors" become better at what they're doing, even if they do nothing more than become able to recognize at which point they need outside help. When they go to the administrator and complain that Mrs. Jones hasn't been receiving the food she's supposed to have, or regular baths, and nothing improves, then they need to reach out to the ombudsman program, or go to the state regulatory agency. 

Our experience is that advocacy grows naturally when you do that. You don't go into an area and say, okay, we're going to fight city hall. You have to really educate people to what should be expected of nursing homes based on the regulations. Then you have to show them there are legitimate places, like the state regulatory agency, where they can go with the problem. 

There was a wonderful situation in Tifton, Georgia, where a nursing home owned by a corporation was giving people problems. Families formed a council and confronted the corporation. They were able to make changes in the administration of that home over time because they kept on pointing out to corporate headquarters that things weren't changing. That's one of your best situations — where a group of family members becomes so concerned that they themselves organize. In the process, of course, they reached out to the local ombudsman, to the state ombudsman program, and then when they heard about the Coalition through the state, they asked us, "What can you do to help us?" 

Is most of your work in the South tied to the Older Americans Act mandated state ombudsman program? 

In most of the Southern states we work with, there is a core group of people, usually associated with the ombudsman program, who work unbelievably hard all the time to try to change what's there and to continually educate more people. 

In Georgia, people are organized almost exclusively under the state ombudsman concept. The state Office on Aging started working in communities to get volunteers for local ombudsman programs, but they saw they needed to formalize their network. [In most places, the state or local ombudsman program does not have enough financial resources to afford sufficient staffing.] So in Georgia they moved aggressively to get an ombudsman statute through state legislation. Now ombudsmen there get trained, and certified, and they're in place throughout the state. 

You've said one of the strengths of the Coalition is the diversity of approaches its member organizations use in their state efforts. What are some examples?

In Kentucky, a coalition of local and state groups, Quality Care Advocates, has organized a residents' council that brings residents together from various nursing homes in Louisville and Lexington. The residents gain a lot of strength when they sit together and talk about their problems and become involved themselves in aggressively trying to get a local ombudsman on a regular basis. 

The Kentucky Health Care Association [which represents proprietary nursing homes] is extremely strong and has fought the ombudsman program at every level. For example, it filed a lawsuit against the state ombudsman a couple of years ago basically saying she had no right to do the job that she's supposed to do under state law. 

We work with SAGA [the Social Action Group on Aging] in Nashville and with the Tennessee ombudsman as well. SAGA is a very good group. It has a hotline that people can call that's very well-advertised in the community. They work trying to get better legislation in the state and to improve conditions in local nursing homes. 

There's another group — Nashville Communities Organized for Progress (NCOP) — that did a major direct action campaign in the Nashville area to make sure the cost reports on nursing homes were available to the public. Cost reports are important to local advocacy groups that want to pinpoint what a nursing home is actually spending and be able to make some cost comparisons with similar nursing homes. 

According to regulation, those reports should be available to the public, but the Tennessee comptroller decided not to give consumers the cost reports. So NCOP held a public hearing and got a lot of publicity around it. The publicity generated more volunteers who wanted to support their work. SAGA supported them and testified at the hearing. 

That was a real classic kind of organizing that came from a more radical grassroots group: it worked because all the people in the network supported the activity. Now those cost reports are available to the public. [For more about NCOP, see pg. 88.] 

How is the nursing home reform movement faring in the current atmosphere of deficit reductions, cuts in social programs, and deregulation? 

I think we're holding our own. There's a growing recognition among state regulatory people, particularly in the South, that ombudsman programs can be helpful to them. They're asking consumers what they have to say. There is also an understanding in the nursing home industry and in government — no matter who's in power — that there is a consumer movement that, though small, is here to stay. They recognize that there are concerned people who are organized into consumer advocacy groups, who are becoming very educated about what is required of nursing homes, and who really intend to see that standards are met. 

Elma Holder recommends that anyone who is concerned about nursing home conditions or an individual patient's rights contact the state Office on Aging in his or her state and ask for the State Long-term Care Ombudsman. For information about individual or organizational membership in the National Citizens' Coalition for Nursing Home Reform, write to the coalition at 1825 Connecticut Avenue, NW, Washington, DC 20009.