Where's the Jello?
Part 2

A TIDY ENVIRONMENT
The ICF/DD-H regulations have prompted Bayberry to keep the home looking better than it otherwise would, although most people who enter the house note how clean and attractive it is. Over the years, two parents have asked about moving in, and one detects a touch of envy in many social workers who visit the house for the first time. Quite frankly, the home (and its furnishings) are a cut above the environments in which many middle-class Americans live.

Having said this, there are abundant deficiencies each year related to the physical plant. Almost always, there is a burned-out light bulb or two. With twelve foot ceilings, a few spider webs are not uncommon. Furniture is sometimes chipped. Paint may be peeling. There is some soap residue on shower doors and interior tile, and so forth.

Despite the new focus on active treatment, and an attempt to reform health licensing and certification by downplaying paperwork and physical plant, the message is not getting through. Of the 15 pages of deficiencies cited in the most recent review of the home, several dealt with physical plant. Nearly all of the remainder concern paperwork, and the burden is growing.

Quality Assurance and Evaluation
What does it mean to say the health facility evaluators are evaluating programs or assuring quality? In their day, some of the expectations for people with mental retardation, as expressed in licensing and certification standards, were quite visionary: for example, a comfortable mattress, clean linens, working light bulbs. The problem is that no expectation ever leaves the list, and everything is deemed very important. Unfortunately, just as the system is trying to downplay the physical plant and paperwork, and upgrade active treatment, the field of developmental disabilities has moved on to supported employment, full inclusion, self-determination, choice, and other values. A less bureaucratic, less professionalized system is needed, if quality outcomes for consumers (and their families) is the criterion.


A Role for Parents or Consumers?
Would you like to call a few parents and ask them how well
the group home is meeting the needs of their adult children?

-- John Shea


Why would I want to do that? They would feel threatened
or coerced, and simply tell me what they think I might like to hear.

-- Health Facility Evaluator


There are many possible approaches to evaluation. In McComb-Oakland Regional Center, Michigan, for example, trained teams of parents evaluate residences, and officials appreciate what they find, report, and recommend. Basically, parents ask: "Would I want my son or daughter to live here?" In answering this question, one can be sure that matters of interest are quite different from the interests of health facility evaluators.

Appendix B to this paper describes the results of an evaluation carried out by a Bayberry Board member, in which over twenty individuals, including residents, parents, and staff, among others, were interviewed. Highlights were:

What people liked best about Bayberry were (1) warm, caring, competent staff, and (2) positive changes in resident lives.

Recommendations for improvement focused on (1) activities and choice; (2) individualization; (3) safety and well-being; (4) staff benefits; and (5) ways to economize on the use of resources.

Interestingly enough, nothing was said about (1) more or better paperwork or (2) the physical environment, two priority values embedded in the licensing and certification process.

Does the health facility evaluation process, even with recent emphasis on active treatment, reflect what is important to individuals served and to their families? Not really. The evaluation model used for the ICF/MR (Small) program is one of form and discrepancy. That is, one asserts that certain features of programs (e.g., purposes, program design, staff, consultants, other resources, etc.) are important, and constitute standards of excellence (or, at least, of acceptable quality). The question is whether a home adheres to that form, or to those standards. In other words, the question is not whether clients are happy, developing skills, and being productive and involved in community life, but rather "Does the program adhere to federal and state law and regulations?" There is nothing necessarily wrong with form evaluation, so long as the model against which the program is judged leads to good outcomes and to a better life for residents.

One evaluator told me that, in the case of poor programs, no matter what licensing and certification personnel do, there is little positive change. Any attempt to discuss the merits of the present system typically brings the retort: I don't care what you say, if you take the money, you pay the price? One has to be suspicious of fundamental purposes when the licensing and evaluation system provides no training or technical assistance to improve services. Indeed, one sometimes has the impression that tough standards are simply a way to limit expenditures from the public treasury.

Pernicious Effects of Present Arrangements
The bind is real. In the case of a fundamentally good program, present health service licensing and certification practices either (1) inhibit improvement or (2) waste resources which have better uses elsewhere, or (3) both. In the case of bad programs, little improvement occurs.

Bayberry was encouraged to apply for a change in licensure from a community-care facility (group home) to a health-services facility (ICF/DD-H), and information about the bureaucratic ramifications was hidden from the agency. It looked to be an opportunity to improve services and, thereby, the quality of peoples' lives. In 1985, I reported that "at best, for the 70% increase in funding involved in . . . [conversion] to an ICF/DD-H, the amount and quality of services [has] increased by no more than 10%." At that, I noted other difficulties, including immersion in trivia and a big reduction in the money residents have for themselves (for personal and incidental needs). By policy, Bayberry decided to allocate substantial resources ($4,000 to $5,000 per year) to recreation and other activities, despite the complete absence of such an expenditure category in the initial studies leading to establishment of a rate-of-reimbursement.

How can there be such a small improvement in services and lifestyles? The answer is really quite simple. On the one hand, much of the added resources had to be devoted to activities that have little or nothing to do with the quality of client lives. The added funds did permit a small increase in direct service staff hours, but most of the funds had to be used for administration, clerical support, increased visits to high-priced outside professionals, and to offset the loss of personal and incidental funds. Besides ignoring recreation and training expenses, the rate setting process ignored administration and clerical support entirely, forcing programs to offer lower pay and benefits for direct service staff than would be optimal.

PASSING THE BUCK, OR WORSE
The ICF/MR (Small) program adds numerous specialists to the staff, and results in somewhat greater division of labor. There may be some advantages here, but there are disadvantages as well. It is quite easy for some staff to defer to others considered more expert. The upshot can be, if one is not careful, that direct-care staff will ignore complaints (e.g., "I scraped my knee. Would you take a look at it?" may bring a response: "Why don't you wait for [the nurse]; she is coming over to see you guys tonight.") Specialization and division of labor can, as we all know, result in "passing the buck."

Figure A shows "Some Things I Learned, but Wish I Hadn't, from Working in an ICF/DD-H." Perhaps I was unbelievably naive. I realized that staff could steal medicine, and that tracking medication subject to potential abuse is important for everyone's well-being. But, both physicians and pharmacists keep track of when re-fills should be needed. Therefore, the very elaborate controls (and tracking) of medicine called for in the ICF/MR (Small) regulations is over-kill.





Figure A
Some Things I Learned,
but Wish I Hadn't,
from Working in an ICF/DD-H

1. Paperwork and reality sometimes diverge. -- A 20 year old prospective staff member asked me: What does it mean to say that residents take a shower every day? I learned that at a nursing home where she had worked, she had been expected to take patients to the bathroom; and, if time were short, she dunked their heads under the shower and recorded this event as a shower or bath on a flow sheet. She didn't want to have to do this again.

2. Some Medi-Cal clients do not exist. -- I once asked a Medi-Cal Consultant why she wanted to see each client every other visit. The reason, she said, is that some providers bill for non-existent clients.

3. Some drugs have substantial street value. -- I should have known this about pain relievers, like PERCODAN, but did not until we had a Consulting Pharmacist, who hesitated to destroy left over PERCODAN tablets. He destroyed them, when I insisted.

4. Providers never report untoward incidents (e.g., client abuse). -- In the first year or so of the program, a provider in Southern California took disciplinary action and reported unfortunate incidents (e.g., a staff mem ber striking a client). He quickly learned that the only response from Licensing was a citation and fine. A licensing evaluator confirmed that, despite reports being called for, none is ever submitted, except, as in this case, where a new provider didn't know any better.




WITHDRAWAL
There are people, and agencies, that trumpet the good news of residential service monitoring through practices like health services licensing and certification. Quality assurance is like motherhood, apple pie, and the flag. Who, in their right mind, would not be for it? Parents who have not taken the time to look and to listen to what actually takes place, can, perhaps, be excused. But, after reading this paper, I hope they will never again, simplistically, equate the activities of health licensing and certification personnel with assurance of quality, because the latter depends on so much more.

But, what about those who bear the brunt (or burden) of the regulatory system gone awry? If the paperwork dragon wastes resources or worse, why don't more people try to slay it? Several officials tell me that parents, like myself, have insisted on piling one regulation on top of another.

I am not the only person railing against excessive paperwork, which is absorbing resources with much better uses elsewhere. Many of my colleagues grumble. Indeed, everywhere one looks, in California at least, paperwork accountability requirements are growing by leaps and bounds. This is true for regional centers, day programs, and most everyone else.



Why No Paperwork Rebellion?
Every chance I get, I ask this question. One of the greatest sadnesses in my life has been the slow realization that we often prefer paperwork to working directly with consumers. I see no other reason. If we enjoyed the activities that paperwork keeps us from, we would be far more assertive and demanding in bringing the paperwork boondoggle to a halt, and instituting other mechanisms to carry out legitimate monitoring and review functions.



A friend of mine, who works at a state hospital, is absolutely convinced that what I say is true. Young people, when they join the staff, are energetic and idealistic, looking to improve people's lives, but staff sometimes find interacting with patients and residents punishing, and drift to other activities. When I occasionally visit adult units at a state hospital, I typically see residents milling around in the corridors or day rooms. Staff on the floor typically are responsible for 9-12 residents. Several staff are ensconced in a glass-enclosed office (the nursing station) sipping coffee, chatting, writing notes in charts, or . . . ., as one state hospital worker told me, reading novels.


Direct Service or Something Else?

I decided to cut most of the less important seminars. . . . At the state hospital there were seminars scheduled for every hour of the working day. I suppose I could have convinced myself that I was learning about patients by attending, but tell me, what do you learn about patients by avoiding the ward? It was possible for a resident to spend almost no time on his ward and, by putting in an appearance at every conference, to give other people the impression he was really interested in learning. Of course, he might not have any idea what to do with a real live patient, but he could fake it good.

-- David Viscott, M.D. The Making of a Psychiatrist, pp. 219-220.



Bayberry's first recreation therapist, who is a full-time counselor, completed a six-month internship at Napa State Hospital before joining ICF/DD-H staff in 1982. She told me that it was all that she could do to spend half her time with patients and residents of the hospital -- given committee meetings, report writing, and other duties assigned to her.

A FALSE SENSE OF SECURITY
Feelings of insecurity are not uncommon when confronting new and novel situations. I recall a parent saying, one day, that he preferred to have his young son live in a large ICF (50 beds or so), for three reasons. First, if his son were to live with another family, the question as to why he didn't live with his parents would be too troubling. Second, the ICF had people with professional credentials, especially trained (presumably) to meet the needs of children like his. Third, the father felt comfortable opening the door and walking in unannounced, but thought such behavior would be inappropriate, if his son lived with another family or in a small group home.

The executive director of our local Area Board kindly agreed to serve on Bayberry's human rights committee. He was more shocked than I was to learn that, like state hospital superintendents of old, ICF/DD-H administrators were to investigate, determine, and submit any needed reports whenever there were an allegation of client abuse. While I believe in managerial prerogatives, I was easily swayed to my friend's position that such a regulation was unconscionable. Nevertheless, it remains.

Avoiding Bad Things Some parents feel a sense of security knowing that stan- dards and quality assurance activities are in place. Viewed from the inside, my guess is that discovering anything untoward happening would be accidental. One evaluator told me that reports of abuse never come from insiders. Is it any wonder, since a citation and invoice to pay a fine would be in the next day's return mail. The ICF/DD-H regulations, harkening back to the days when an institution's superintendent was 'king of the hill,' name the facility's administrator as investigator, judge, jury, and reporter when allegations of wrong-doing come to his or her attention. It's as if the client rights advocate at the regional center, or the Area Board on Developmental Disabilities, were non- existent.

Careful recruitment, selection, training, and supervision of staff is critically important in minimizing maltreatment. Philosophy and approach are also important. What can parents and other citizens do to minimize maltreatment? In my experience, several things can help:

clear open-door policy (e.g., parents are welcome, announced or unannounced, at any time);

having employment or a training program for consumers away from home, operated by people independent of the home; and

expressions of interest, and seeing one's son or daughter frequently, in the home and outside.


End of Part 2


Part 3


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