WHERE'S THE JELLO?
The Continuing Saga of One Home's Experience with the ICF/MR (Small) Program (1.)
by
John Shea*

Part 1 of 3 Parts


Allen, Shea and Associates
1780 Third Street
Napa, CA 94559
February 12, 1990


Introduction This is an update of an earlier piece, written in the summer of 1985, a few days after a licensing and certification visit from California Health Services Licensing. At the time, I was executive director of Bayberry, Inc., a position I retained until April of last year. In 1985, Bayberry had a single group home (ICF/DD-H). A second group home, licensed by Community-Care Licensing, was added in 1987.

I sent the earlier paper to a few friends and associates. With my permission, it was distributed widely across the State. Many who read it enjoyed its comic-tragic anecdotes and the more serious points that I tried to make.

I learned later that many resource developers in various regional centers passed out copies to people contemplating going into the ICF/DD-H business. I was told that they wanted potential service providers "to know what they would be getting into." In revising the document, I have remained sensitive to this use. Beyond that use, my hope is that readers will:

form a much clearer view of some of the things that go on under the rubric of quality assurance; and

assist efforts to reform the ICF/MR (Small) program (if feasible) or to replace it with a much more progressive Medicaid Home and Community-Based Waiver program.

This paper is organized as follows. It begins with a discussion of my involvement in the ICF/DD-H program, and of my reactions upon first seeing regulations for it. This is followed by an overview of the regulatory environment, which will give the reader some idea of the complexity in this state/federal effort. The values evident in the work of ICF/DD-H evaluators are illustrated in the next section of the paper. This is followed by a discussion of evaluation and quality assurance, and of some of the effects of licensing and certification activities. The paper closes with a number of recommendations.

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1. The initials ICF/MR (Small) stand for Intermediate Care Facility/Mental Retardation (4-15 bed capacity). In California, homes in this category are referred to as ICF/DD-Hs or ICF/DD-Ns, where the latter initials stand for Developmentally Disabled (Habilitative) and (Nursing).

*The views expressed are those of the author, and may (or may not) be shared by others associated with Bayberry Incorporated or with Allen, Shea and Associates. All statements of fact and opinion are the exclusive responsibility of the author.

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Background
Since 1971, federal legislation has enabled states to use federal Medicaid funds for facilities with 4 to 15 residents. Bayberry's home on Calistoga Avenue, in Napa, has been in existence since 1979. Experience there is the basis for this report. The group home (facility, in the lingo of officialdom) was one of sixteen pilot efforts, undertaken around 1981, to enable California to get some experience with the new (for California) ICF/MR (Small) Program.

California decided to use this program to meet the needs of people in two categories: (1) those with moderate-to-severe behavior problems, and (2) those with two or more rather serious self-care deficits. Bayberry's group home had residents in the former category. In 1981, a team of federal and state officials visited the program. One federal official commented that staff were serving the kinds of people the new program was designed for, and were providing the kind of quality services expected of ICF/DD-Hs. Government agencies, we were told, simply wanted to give Bayberry "more money to do the kinds of [wonderful things] already being done."

When given grant money to convert to ICF/DD-H status, little did I know what lay in store. There were no regulations, or at least none that were shared with providers in the pilot project. Months later (in 1982), when I first encountered draft State regulations for the ICF/DD-H program, I recall having thought that a group of health-care professionals had written them, and that nurses, medical social workers, pharmacists, dietitians, nursing home administrators, medical records technicians, qualified mental retardation professionals (QMRPs) and a vast army of therapists (physical and occupational therapists, speech pathologists, audiologists, and the like) were seeking to maximize their professional job opportunities. Each professional interest group, except for psychology, a very strange oversight, which was later corrected, seemed to want a piece of the action.

Initial Reaction Upon seeing the regulations for the first time, I thought to myself, this is a health professional's full-employment act.




Orphanages, a Fable

Once upon a time, there were orphanages, where children who had lost their parents went to live. Despite the best efforts of some very good people, the children did not progress as well as had been hoped. Orphanages tended to be large, impersonal, and costly. Some people decided that foster care or adoptive homes would be better. The people running orphanages were disappointed. They just knew that, if they had enough money, they could provide better care than foster or adoptive families. So, they went to work to convince the citizenry of the advantages of orphanages, and to get more money. The going was rough. Many legislators and concerned citizens didn't know whom to believe. Were foster and adoptive parents as bad as some said? Was professional oversight as important as they were told? Foster and adoptive care grew in popularity, despite obstacles and road blocks. Finally, the good people running orphanages decided that, as a condition of their less vocal opposition, foster and adoptive families would have to do exactly the same things the good people in orphanages had tried to do. After some years had passed, there existed a few big orphanages and many, many small orphanages.




By 1985, as a result of a number of experiences and discussions with peers, I had come to some understanding of the origin of the ICF/MR (Small) regulations, and of their ostensible purpose. Basically, the regulations emerged from efforts to reform large, custodial, congregate-care facilities, such as state institutions for people with mental retardation.

At a high political level, my suspicion has been that representatives of state hospitals (including hospital parents) had insisted that what's fair for us, is fair for them. Some people actually think that the regulations are a good thing. It is very clear that practically no one has given attention to alternative quality assurance (and residential monitoring) schemes to meet legitimate purposes, a matter taken up later in the paper.

The Regulatory Environment
Several sets of regulations and procedures play themselves out in ICF/DD-H programs. A few, such as recent environmental health regulations, are so minor (at least for Bayberry, Inc.) that they are ignored here. There are reasons for some regulations. Generally, each new regulations is a response to some notorious deviation from good practice. Unfortunately, it is good practice that should be the criterion of a good program, not good paperwork. Some knowlegable observers feel that these two may be inversely correlated!

FEDERAL CERTIFICATION STANDARDS
A federal survey manual (nearly 100 pages long), together with interpretative guidelines (another 158 pages long), are at the heart of the ICF/MR regulatory system, administered by the Health Care Finance Administration (HCFA), of the U.S. Department of Health and Human Services. With the idea that a small home (e.g., with 6 residents) may operate differently from a state hospital with 1,200 residents, the interpretative guidelines for the ICF/MR (Small) program make a few concessions for small size and community setting.

Nevertheless, the survey manual is the same, and is considerably more detailed than survey manuals used to evaluate skilled nursing and other long-term care facilities funded by the Medicaid program.

Under the Medicaid program, which funds ICF/MR services, HCFA contracts with the State of California. One element of the contract is for state officials to survey facilities in order to certify their eligibility to participate in the Medicaid program. Federal officials audit the work of state officials, reviewing approximately 5% of all facilities each year. In 1984, federal officials audited the work of state licensing evaluators at Bayberry.

STATE LICENSING REGULATIONS
In 1982, California issued state regulations for the ICF/MR (Small) program. In 1986, revised regulations were issued. The original state regulations, some 286 pages in length, tightened up and further restricted what could be done. In the area of behavior management, for example, the first set of state regulations was largely silent on important issues, and simply regurgitated material in the federal survey manual. This meant that ICF/DD-Hs could follow procedures often found in state hospitals -- for example, use of restrictive devices, soft ties, and so forth. Bayberry never used such devices, nor has there ever been any intent to do so. A behavioral psychologist was apparently involved in re-writing the regulations. By 1986, more restrictions had been placed on ICF/DD-H programs than one finds in ordinary board and care homes, some of which handle residents with very severe behavior difficulties.

There was no change in the need for at least quarterly meetings of a human rights committee, since this is required by federal regulations. But, over time, this committee has been charged with responsibility as a patient-oriented council under nursing reform legislation, and for approval of the way in which individuals living in ICF/DD-Hs spend their personal and incidental funds, a topic discussed later in this paper.


Old regulations never die, they don't even fade away!
-- Adapted from General Douglas MacArthur

The regulations permit ICF/DD-Hs to use conventional state hospital techniques of physical control and use of psychotropic drugs, but permit only the following aversive and restrictive interventions: contingent observation, extinction, withdrawal of social contact, fines, and exclusion time-out with the client in constant visual observation. And, despite strong procedural controls (e.g., the human rights committee), it is more cumbersome to get approval for such aversives than in board-and-care and group homes, licensed by Community-Care Licensing. For example, the human rights committee must document the effects of all apparently positive reinforcement strategies and certify that they have not worked. And, if used (as brief extinction often is), the resident's Individual Service Plan (ISP) must be expanded by about four pages, single-spaced.

THE MEDI-CAL FIELD OFFICE
At least annually, a physician, social worker, and nurse review Bayberry's program for the Medi-Cal field office, and submit a report, with copies going to the agency's Utilization Review Committee, which, fortunately or unfortunately, Bayberry does not have. A Medi-Cal consultant visits the home at least twice a year to review client progress, and to assess whether clients still require ICF/DD-H level and type of care. At that time, beside client records, several pieces of paperwork are presented: (1) a Treatment Authorization Request (TAR), signed by each resident's attending physician; (2) a Certification for Special Treatment Program Services, signed by the Regional Center Director or his designee; and (3) a Prolonged Care Assessment Form, obviously designed for skilled nursing facilities.

THE MEDI-CAL FINANCIAL SYSTEM
The financial payment system is said to be cost-effective. The Medi-Cal financial intermediary distributes a lot of money at an administrative cost (to the Medi-Cal program) which is quite low. The system's apparent efficiency is, however, illusory. The cost to the service provider is simply ignored.

Billing for ICF/DD-H services is quite complicated and cumbersome compared with billing regional centers for services provided by a community-care facility of equivalent size. The Medi-Cal Billing Manual currently in use is the same one used in 1983, and had been in effect for some years before that. With bulletins and updates, this manual fills two 5-inch, 3-ring binders. Every invoice must be precisely accurate, and if a mistake is made, it can take over a year to get it corrected.

Bayberry has been audited by Medi-Cal auditors each year, with one exception, since 1985. The auditor typically spends two weeks reviewing material submitted by each provider earlier in the year. The Medi-Cal cost report runs to about 35 pages, and its submission is required. The accounts are so detailed that it is said that the cost of a load of laundry can be determined. Such costs are said to be important in adjusting rates of reimbursement from time to time.

In 1985, following an earlier tradition of trying to get dollars into the hands of nurses aides and other direct service staff, and to keep such dollars out of the hands of highly paid administrative staff, the ICF/DD-H rate increase took the form of a wage pass through. This required a report about 25 pages long, demonstrating adherence to the legislative purpose. And, every year since that time, additional paperwork has been required to demonstrate continued adherence to the wage pass-through law. In time, of course, with rate freezes and the like, pressure builds to cut other costs, many of which directly impact the quality of resident lives, but one finds no pressures (or interest) in these indirect effects.

FIRE AND LIFE SAFETY
Each year, a representative of the State Fire Marshall's Office visits the home, which is a stately, two-story, Victorian, with 2,700 square feet of floor space. In 1985, with new federal standards coming into place, Bayberry had to install a manual fire alarm system and a magnetic door-closing device guarding the corridor upstairs. Total cost: about $1,200. Subsequently, all smoke detectors had to be hard-wired and integrated into the alarm system, making it automatic.


What is a health facility anyway? Do you do any operations here?

-- Deputy Fire Marshall (1983-84)

Only an occasional frontal lobotomy in the attic.

-- John Shea (tongue-in-cheek)

In 1985, a local fire official visited the house, and insisted on sprinklers over windows at the rear of the house, where upstairs and downstairs porches, and a stairway in-between provide a second means of egress from the upstairs. In our area, this fire/life/safety code requirement had never been enforced for structures under three stories in height. Through negotiation, and at modest expense, a single sprinkler was installed. Currently, a representative of the State Fire Marshall's Office is demanding that Bayberry take additional steps -- ideally, from his point of view, installation of a full residential sprinkler system throughout the house. Appendix A discusses this recent turn of events.

MISCELLANEOUS NURSING HOME REGULATIONS
Because ICF/DD-Hs are classified as long-term [health] care facilities, new legislation and regulations intended primarily for nursing homes apply to all. Simply to illustrate, in 1985, I attended a workshop in Oakland, California, on "Implementation of the Provisions of AB 180 and SB 53--Nursing Home Reform Legislation." Among the new requirements were (1) a patient-oriented council (with regular meetings and minutes) and (2) display of a poster which tells of the role of the State Ombudsman. Wise public policy might have been to have the Agency on Aging design and mail out a generic poster with room to add local information, but was this done? No. Rather, there was what amounted to a poster contest, with thousands of facilities having the task of creating their own.

What are the Values in the Current Licensing and Certification Process?
Evaluation and quality assurance rest on some shared vision of good lives and good services. Most progressive value statements, these days, emphasize:

integration (physical presence and meaningful participation);
productivity (e.g., a regular job);
independence and participation;
choice-making;
warm, caring relationships;
a congenial lifestyle;
reasonable health and safety; and
the like

The values evident in much of the work of Health Care Licensing are good paperwork, a tidy environment, and safety in a rather absolute sense. Until recently, HCFA conducted look behind surveys, wherein they looked 'behind the paperwork' to see what really was going on. Over time, those items in the survey manual most readily measured got the lion's share of attention. Surveys focused on physical plant and paperwork. Little interest was paid to client well-being, directly measured, or to progress in reaching a valued lifestyle.

In 1985, I recall discussing active treatment with researchers carrying out a study for HCFA. Matters subsumed under this rubric were not getting the attention they deserved. I think I know active treatment when I see it. The researchers, however, not wanting to add items to the 693-item survey manual, picked 75 items to serve as indicators of active treatment. I was appalled. The items selected had to do with the composition and frequency of interdisciplinary team meetings, the content of Individual Service Plans, and the like. How hard it is to distinguish the reality of life (interactions, training, assistance, etc.) from the paper representation of life!


What's Really Important?
There is reality, and there is the paper representation of reality.
Health facility evaluators are taught to focus on the latter.

SAFETY
Over the years, on more than one occasion, Bayberry has been threatened with a citation (and fine) because the hot water in the upstairs bathroom exceeded 110 degrees, Fahrenheit. All residents of the home are sensitive to water temperature, and adjust dials, knobs, and their own bodies, just like the rest of us, to avoid being scalded when taking a shower.

Some individuals entering the home have needed a little time to figure out temperature controls, either because they hadn't mattered in the past (e.g., while living in a state hospital), or the controls were different than those they were used to. Instruction and supervised practice were provided, until the person caught on. I have always felt that restructuring of environments is a two-edge sword. Quite easily, having only tepid water can lull one into inattention. One supposes that the assumption is that once in an institution, always in an institution. At Bayberry, however, from the beginning, our job has been to assist people in developing the kind of know-how that would enable more independent living.

Interestingly enough, plumbers I know can relate stories of automatic mixing valves that malfunctioned causing serious injury. To be sure, if individuals were immobile, had no feeling in their bodies, were taking bathes, and couldn't get out of the bathtub on their own, I would be in favor of external temperature controls. But, this is not the case at Bayberry.

One evaluator, fresh from an earlier career as a medical corpsman, suggested that we put signs above every faucet in the house [HOT, COLD], so that residents would know which was which. I told him that no one knew how to read even such simple messages. He asked: "Then, how do they know which faucet to turn on?"

Bayberry was 'dinged' in 1984 for having porches front and back without fresh paint. The stated deficiency actually named the condition as one of safety, rather than esthetics. Silly us, we painted both porches with enamel paint, not knowing to add grainy material to the paint to avoid slipperiness. More than one resident took a few minor spills, until the paint was scuffed up enough to avoid being slippery when wet.

GOOD PAPERWORK
In 1983, in preparation for an initial licensing visit, I naively assumed that in federal and state regulations the adjective written meant something. Whenever I encountered this adjective, policies and procedures were written down. When the adjective was missing, I assumed that it would be alright to tell the surveyor what the Agency's policy and procedure was. I quickly learned that anytime policies and procedures were even hinted at, one had to write them down. Bayberry has 200 pages or so of policies and procedures. Evaluators have expressed surprise when told that, with rare exceptions, no one looks at them from one site visit to the next. The reason, of course, is that the home is operated by a small organization, has little staff turnover, and staff talk to one another.



Good Dentistry or Good Paperwork?

May I ask you a hypothetical question? Consider two scenarios. In the first instance, a non-verbal resident with rotten, abscessed teeth is taken to the dentist's office, is uncooperative, and fails to respond to the dentist when asked: 'Any complaints?' The dentist makes an entry in the resident's dental progress report that there were no complaints and that the resident was uncooperative, signs and dates the entry.

In the second instance, the same resident is taken to a university dental clinic in the city, is sedated, and examined. Surgery is scheduled and carried out at a later date, and the resident gives every indication of feeling much better, but no dental progress report is forthcoming, after repeated calls to the clinic, 60 miles away. If you were forced to choose between these two scenarios, which would you prefer?

-- John Shea

We pay for the paperwork.

-- Health Facility Evaluator





It is all facility evaluators can do to spend a couple of days at a small ICF/DD-H, pouring over paperwork and little else, to complete their assignments. When something is missing (e.g., a written statement that the local fire authority had assisted in the development of a fire and internal disaster plan), I get a name and telephone number and ask the evaluator to call and find out. The response is always the same: if it is not written down, it doesn't exist. One time, an evaluator asked me if we had had "infections." I said that we had had some -- colds, flu, etc. "Since you have infections, where are the minutes of the infections committee?," I was asked. I indicated how we handled infections and minimized their occurrence, through frequent hand-washing, insisting that clients use their own towels and washcloths, etc. We were cited for a deficiency for not having an infections committee.

Since it is literally impossible to examine everything covered by law and regulations in the course of a two- to three-day visit by a team of evaluators, how are priorities determined? As best I can tell, the importance is determined by (1) each evaluator's professional background; (2) ease of measurement (the easier, the more important); and (3) what federal auditors might think of their work.

In some circles, there is a move away from regurgitation (from statutes to regulations; and from regulations to policies and procedures), but not among health facility evaluators. One year, evaluators expressed special interest in policies and procedures on Control and Discipline of Residents (their term, not mine), which had been rather carefully crafted, is read by new staff, and has been helpful. It lays out exactly what staff are to do (and why) under certain circumstances. It said nothing, however, about what was not done. I was asked about corporal punishment and locking people in rooms. Surprised by the question, I said that, of course, we did not do those things. Bayberry was 'dinged' for not saying that these things are not done. As I told the evaluator, we could list 50 things that we do not do: sticking toothpicks under fingernails; floggings; kicking people in the shins; tripping clients walking down the stairs; etc.

Several other mandatory pieces of paper are essentially worthless, . . . or worse. All ICF/DD-Hs have to have a written transfer agreement with an acute care hospital. One supposes that the reason is that doctors at one hospital (e.g., a state institution) may not be able to get another hospital to accept their patients. To get a written agreement was a waste of time for us and for the hospital administrator. The reason is that residents have an attending physician, who has privileges at the acute care hospital in Napa. This means that he can admit any one of his patients, if he chooses. The first transfer agreement, patterned after a nursing home agreement under Medicare, expired in a year. Subsequently, I learned the magic words ("the agreement will be in effect indefinitely, subject to termination by either party upon 30-days written notice") and the document wasted no more of my time.

Another set of rather useless documents (at least for Bayberry) are a series of working agreements with various professionals in the community, who accept Medi-Cal clients and, therefore, are accessible with or without working agreements. Again, one supposes that people who cannot get to a professional's office (e.g., if bedridden) may need the support of a written agreement, since there may have to be added compensation for house calls. By and large, the working agreements, together with copies of professional credentials, have had no value. Exceptions are working agreements with the psychologist, dietitian, pharmacist, and nurse -- all people who come to the home to do much of their work.

Being the new kid on the block (and, therefore, suspect), and looking for guidance but getting no new vision, evaluators understandably fall back on old habits and procedures. The regulations for ICF/MR (Small) programs call for a central records system. This makes sense, of course. Active records are maintained on units, wards, or floors, but when patients go elsewhere, records are transferred to a central records office. What does one do when client records (indeed, all records) are in an office inside a single ICF/DD-H? In an early licensing visit, I was told to get a 3"x5" file box, and to put a card in the box (name, admission date, exit date) for each resident. Tongue-in-cheek, I wrote into the Plan of Correction that Bayberry would do this, so that no one would forget each client's name.

When converting to ICF/DD-H status, I had to go to some lengths to get a written agreement with our dentist, since he said that he preferred "to practice dentistry rather than paperwork." Nevertheless, he accommodated our need. What constituted an acceptable 'dental progress report' for the regional center was not acceptable to licensing. However, I solved this problem by designing a form labeled a Dental Progress Report, on which the dentist's front office staff simply transcribed, word-for-word, what was already on the other sheet of paper. This was acceptable: same information, but with a proper form name. In 1985, upon examining Bayberry's working agreement with the dentist, an evaluator asked: "How do you know that Dr. ______ is really a dentist?" I answered: "He takes Medi-Cal sticky labels in full payment of his services. He has a well-established private practice. He has privileges at Queen of the Valley Hospital. And, his name is not on the Medi-Cal List of Suspended or Ineligible Providers, a copy of which I have in my office." I was told to get a copy of his current license. Clearly, if there were genuine concern that Dr. ______ might not be a dentist, a brief visit to his office a few blocks away or a telephone call or two would have provided the answer.

End of Part 1


Part 2


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