Where's the Jello?
Part 3

WASTE OF RESOURCES
By conscious decision, Bayberry spends about $150 per resident per month on food. Bayberry's dietitian consultant, who also works at a near-by state institution, marvels at the quality of Bayberry meals. Halibut Espanol; Super salad with shrimp and crab meat; and many other wonderful entrees are typically on the menu. Again, by conscious policy decision, the leadership of the Agency has chosen how resources are to be used. The state hospital has several dietitians, who perform a number of functions, but patients are fed on about $3.00 per day.

Painters and Nurses: Anything in Common?
Where's the Lysol? Why don't I smell Lysol?

-- Health Facility Evaluator

Why would you expect to smell Lysol? No one here is incontinent. (I learned later, from a friend who is also a nurse, that, like some painters and paint, some nurses enjoy the smell of Lysol.)

-- John Shea

The health facility evaluators that I have encountered have rarely asked how well residents are fed. Interest in nutrition, to the extent that it has been expressed at all, has focused on the dietitian's nutritional evaluation of each resident (a piece of paper) and the dietitian's report of activities and recommendations (a piece of paper).

Real Food for Real People
One has to wonder, at times, whether trade associations
sometimes get involved in the writing of regulations
for the ICF/MR (Small) program.

Among expressions of interest in the content of meals, two tales are worth sharing. About 1984, a health facility evaluator looked at a menu and asked: "Where's the jello?" I didn't know quite how to respond. I noted that occasionally jello was served, but that I wondered why she even asked the question. With a little exploration, I learned that this was the first time the evaluator had been to an ICF/DD-H, and that her question simply reflected having seen jello on the menu of most nursing homes. We talked a little bit about sugar, gelatin, and the nutritional value of jello, and turned to other matters.

Two or three years ago, after training by a Nutritional Consultant, health facility evaluators cited Bayberry for not serving at least 6 ounces of meat protein to each resident every day. I asked whether he meant animal protein, and he said "No, meat protein." Knowing that residents typically use low-fat milk with cereal in the morning, drink milk at dinner, have eggs typically once or twice a week, and in many other ways get plenty of protein, I initially refused to correct the alleged deficiency.

Do Licensing Personnel Ever Make Mistakes?
Medi-Cal means never having to say you are sorry.
-- Anonymous

I talked with a sports physiologist friend, who said that it would be extremely rare for an American to get inadequate protein. Excessive fat and inadequate complex carbohydrates are the typical problems. I asked our dietitian to analyze our menus, and she reported that 6 oz. of meat protein would be inappropriate. My failure to respond to licensing in the way they wished resulted in my being called on the carpet. I met in the regional manager's office, and was promptly accused of being uncooperative. Seeing who had the upper hand (i.e., control of the purse strings), I quickly became cooperative and told them what they wanted to hear. We simply decided to ignore the 6 oz of meat protein rule, and the matter was never mentioned again. It was my distinct impression that evaluators had been coached never to admit a mistake.

What Can Be Done: Reform, Abandonment, Minimizing Effects

SYSTEMIC REFORM
Certain policy recommendations have to do with reform (or abandonment) of the ICF/MR (Small) Program in California. Other recommendations fall into the category of minimizing the pernicious effects of existing licensing and certification practices. In the first category are the following:

Recommendation No. 1 -- Submit a Home and Community-Based Services Waiver to federal Medicaid officials, to use federal funds now devoted to shoring up state institutions, ICF, ICF/DD, and ICF/DD-H facilities, and to targeted case management.

Recommendation No. 2 -- End the practice of writing state regulations that are more restrictive than federal regulations; accept federal regulatory requirements until they can be improved.

Recommendation No. 3 -- Advocate for a federal survey manual with no more than 200 items, subject to the proviso that each item be no more encompassing than at present.

When everything is important, nothing is important, or the matters of importance are a reflection of personal whim or professional background. If one were interested in quality of life, one would certainly ask questions of residents, their friends, and their families.

Recommendation No. 4 -- End the practice of citations and fines, or adopt State Community Care Licensing practices in this area. Accompany this change with reporting requirements for special incidents and unusual occurrences, along with investigative practices typical of community (not institutional) services.

Like other parents, I sometimes worry about possible mistreatment. My experience with licensing evaluators is that, if it existed, the chances of them finding it are almost nil, for reasons given earlier.

Recommendation No. 5 -- Experiment with alternative evaluation practices (e.g., parent-consumer monitoring teams), including organizational development, technical assistance, and training, in lieu of traditional approaches to licensing and certification, and spend enough on applied research to ascertain effects on client outcomes.

Facility administrators quickly learn that the evaluation process is wholly negative and punishment in orientation. Organizational development to improve services, through workshops and consultation, is non-existent. This is not to argue that, in the short-run, anything else than the present approach is possible. None of the evaluators that I have met would be credible in an organizational development (consultation) role. Evaluators are apparently directed not to say anything positive about what they see, but to point out only discrepancies from [questionable] norms. I asked one evaluator if bad programs were ever improved as a result of their work, and she said that it was extremely rare. I must say that I was not surprised.

What Kind of Clients Do You Serve?
One evaluator, not having seen any of the residents, who
were at jobs or training stations in the community, asked me:
"What kind of clients do you have?"
I replied: "What do you mean, in what respects?"
She went on: "Are they low-grades?"
-- John Shea

Recommendation No. 6 -- Recruit and train health facility evaluators who have modern, progressive ideals, and who know the difference between reality and the paper representation of reality.

The health facility evaluators that I have met are incredibly out-of-date. If they have any background in developmental disabilities, it has generally been in impersonal environments (e.g., large congregate care facilities), often ten or twenty years ago. Without prompting, two visitors have described themselves as being old bughousers.

Recommendation No. 7 -- Simplify! Simplify! Simplify! End the practice of adding layers of bureaucratic oversight whenever improvements are made in policies and procedures.

Just to illustrate the broader problem, consider client personal and incidental funds. Last December, the California Departments of Developmental Services and of Health Services published guidelines on appropriate use of client funds in ICF/MR facilities. These funds amount to $35 per person per month. The guidelines are three pages in length, and were developed with input from DDS, Medi-Cal Benefits, Medi-Cal Audits and Investigations, and Medi-Cal Rate Development.

In effect, the new guidelines require that a facility's Interdisciplinary Team (IDT), Human Rights Committees (HRC), and the client or his or her legal representative (regional center case manager, if no court-appointed conservator), approve quarterly how each client, by name, spends his or her money on anything except clothing and items that facilitate communication with the outside world. In other words, if a consumer wants to buy a milkshake or stereo headphones, he cannot do it without the expressed authorization of several individuals. Not only is this a serious constraint on autonomy and self-determination, but a colossal waste of the time of individuals who should have much better things to do.

FACILITY REFORM
Many service providers seem to feel that so long as the money is forthcoming to pay for so-called quality assurance activities, who are they to object. My own view is less sanguine, especially in the case of well-run homes that have been enticed into converting to ICF/DD-H or N status.

Recommendation No. 8 -- Assign responsibility for as much of the paperwork as possible to one or at most two individuals, and keep the paperwork from spilling over into the workload of direct-service staff.

The leader of another agency that converted homes to ICF/DD-H status back in the early 1980s told me once, some years ago, that the homes had become a blizzard of paperwork. She had delegated responsibility to a sizeable number of staff members.

Recommendation No. 9 -- Put the 'office' (nursing station in hospital parlance) where it is difficult to get to; keep heat, air-conditioning, coffee pots, and other 'goodies' somewhere else; make sure it it impossible to do paperwork and interact with consumers simultaneously; and reward staff for staying away from the office.

Recommendation No. 10 -- Retain, for the benefit of staff, a psychiatrist or psychologist to assist the administrator and staff in maintaining a clear commitment to 'regular lives' in what is a very 'irregular setting,' with absurd paperwork and other requirements.

Administrators and key staff spend an enormous amount of time satisfying the bureaucracy. Unless one steels against it, the constant bombardment of minutia can deflect the organization from meeting the real needs of residents. A psychiatrist (or psychologist) completely divorced from the unreal world of institutional life, should be able to assist staff in keeping the focus of their efforts on quality relationships; active, balanced lifestyles; consumer choice; full participation in home, neighborhood, and community; etc.

Recommendation No. 11 -- Commit the organization, at all levels, to assign priority to expenditures which directly impact the quality of client lives. In a well-run program, this means good food; good, fashionable clothing; substantial dollar allocation to recreation and training expenses (over and above what consumers can buy with their personal and incidental funds); and allocation of significant funds (e.g., &150 to 200 dollars per resident per year) for presents on birthdays and other gift-sharing days. Beyond these expenditures, the quality of direct-service staff is crucial to quality lives.

APPENDIX A NOTES ON FIRE/LIFE/SAFETY

Since 1985, a new procedure has been used in determining how much fire safety is needed. It involves an assessment of the facility and a report on the capabilities of each resident. Three times since 1985, the home has been rated prompt, which is the best rating possible. Last year, with a new surveyor but the same residents, the home was reclassified slow, and this rating is undergoing review based on an informal appeal. The third category, impractical, has never been used to describe the household.

The deputy fire marshall is requiring that Bayberry take one of three actions:

install a residential sprinkler system throughout the house;

have an awake staff member at night; or

install 1&1/2" solid core doors, each with a automatic door closing device, at each of the bedrooms upstairs.

Clearly, from a conversation in the deputy's office, the game plan (and desire) is for Bayberry to install a sprinkler system, and no one objects to this if money is available for that purpose. The other options are considered less desirable from a fire protection point of view. Nevertheless, the implications of various possible actions may be of interest to the reader. When the new federal regulations were put into place, the California Department of Developmental Services (DDS) provided funds for two years to facilities, so that they could add alarm and sprinkler systems. Now, Bayberry has been told that the money is gone. One estimate for a complete sprinkler system is $9,000.

In the case of an awake staff member (which is not presently required), there would be additional operating costs, thereby taking resources away from other uses. Solid-core doors, in a 1896-vintage Victorian, with automatic door closure devices, are not a good idea for four reasons. First, it would be difficult for two residents to get out of their rooms, because the doors are so heavy. Second, it adds another layer of 'institutional feeling' to the house. Third, given how hot it can be in the summer, closed doors are inconsistent with comfort and health. Fourth, open doors (held open by automatic closure devices) are inconsistent with privacy.

One of the good things coming out of the ICF/DD-H experience has been improved performance of residents and staff in caring for their own safety. Fire drills are more common, and the training has been improved. Like mother, apple pie, and the flag, it is hard to be against safety, but let me try to indicate the sources of my concern.

Like many other parents of my generation, I took Persky's concept of the dignity of risk, and Wolfensburger's normalization principle to heart. I do not value 'striving for absolute safety' to the exclusion of other values. To me, having a staff member in the house, a no smoking policy, fire drills, hard-wired detectors, an automatic alarm system, and a solid core door at the head of the stairs to the bedroom corridor are quite sufficient to meet legitimate needs. I have no objection to sprinklers, so long as the money does not come out of on-going operating revenues (directly or indirectly), which are meant to fund on-going services. The 2-hour fire rated doors (typically installed in large nursing homes and institutions with masonry structures) makes no sense. Indeed, the whole house would burn down well before the doors.

The Executive Director of Bayberry decided to appeal the most recent action of the deputy fire marshall, and I was asked to go along. We met the deputy at his office in Santa Rosa, an hour away from Napa. After the meeting, I jotted down a few notes and reflections of what was taking place.

The deputy fire marshall talked of the importance of solid-core, 2-hour rated doors, if a fire were to start in an upstairs bedroom, in the upstairs bathroom, or in the corridor itself. I asked whether sprinklers for just these rooms and the corridor would suffice, and he said "No, what if the fire started in the kitchen?" To which I responded, "That is what the solid-core door at the head of the stairs is for." Anyway, the conversation got nowhere. He seems to be adhering to what he believes to be the letter of the law.

Question: How come Deputy Fire Marshalls in the past rated the household Prompt, but you rated the household Slow?

The inspector noted that he is a Deputy Fire Marshall III, while the others were Is or IIs, with less experience. I was told that he (the visiting marshall) had better training and more experience, and that one of the earlier Marshalls seems to have "bent over to be helpful." I observed that zero risk is unattainable, and that individuals and society always must judge whether any reduction in risk is worth the cost of achieving such a reduction. If this were not so, citizens would insist on having emergency medical teams stationed at every street corner, for this would surely reduce deaths from heart attacks and other events, such as fires. My argument made no difference to the deputy.

Question: On what basis did you rate residents?

The deputy indicated that if people with developmental disabilities are living in ICF/DD-Hs, does this not mean that they are unlikely to respond appropriately to real emergencies? I took issue with painting every person with a disability as necessarily lacking in competence or judgment as to what actions to take in the event of a real emergency. Lack of competence is, of course, a long-standing cultural stereotype. One does not call people idiots, dumbbells, or stupid for nothing. The deputy's observation is no different from saying "Women are nurturing," or "Blacks are good dancers," and I called him on it, but without alluding to these analogies.

The deputy said that he took 'worst case scenarios' as the basis of the rating. Asked whether it made a difference that the fire station is three blocks away, the deputy said that he knew of a case where the engines had responded to a fire across town and a vehicle caught on fire and burned right in front of a fire house. Questioned on the logic of an awake staff member, the deputy said 'What if a fire were to start in the staff bedroom?' And, so forth. Taking only 'worst case scenarios' means, of course, that every human being would fail. We would all have to have solid-core doors whether we wanted (or could afford) them or not. Quite frankly, I doubt whether any self-respecting citizen would accept the deputy's position for himself and for his family.

Question: How and why were existing regulations put into place?

In response to this question, the deputy said that parents had asked for them. (As with the question above, parents were portrayed as a homogeneous group.) Again, I questioned the deputy on this point. Clearly, such a statement is biased, prejudiced, and discriminatory. I told the deputy that I, as a parent, had not asked him to put such regulations in place, and that few (if any) of the parents that I know would be inclined to do so.

Question: What if your action results in shutting down of the home, and residents are forced to live elsewhere?

The deputy seemed positively gleeful. He saw this as highly desirable, since it might add some leverage in getting the regional center or the California Department of Developmental Services to fund purchase of a sprinkler system. In my experience, the deputy's position is not uncommon. Perhaps with any group of dehumanized, devalued, powerless individuals, some people in the 'service system' come to believe that their personal needs come first, and that the desires and needs of the people ostensibly there to receive services are secondary or even trivial. If aimed at us, I venture to guess that none of us would stand for the kind of treatment that the deputy dished out.

APPENDIX B

ALTERNATIVE WAYS TO EVALUATE QUALITY

Bayberry is noted, within the Napa area, as an outstanding group home. It has many of the limitations implicit in six packs, situations wherein six unrelated people with disabilities live together. Some residents have regular jobs in the community. Three use public transportation. There has been a heavy emphasis on physical fitness and nutrition. Three residents have run full marathons (26.2 mile footraces), two under four hours and one (a woman) under five.

There is nothing synthetic or artificial about training. The house is very close to downtown, to stores and offices. Nearly everyone has a bank account and several do their own banking, with little or no support needed at this time.

What values undergird the program. An initial value (in 1979) was that everyone who worked for the agency would have direct-service responsibilities. Other values are integration; choice-making; independence; warm, caring relationships; being a valued member of the community; looking and feeling good; health and reasonable safety.

In 1985, to generate information of use to me (and to the Board of Directors) in shaping the program in desired directions, I asked a board member to conduct an evaluation, by talking with residents, families, and 'significant others,' emphasizing three questions:

What do you like about [the home, or the program]?

What concerns do you have?

What changes or improvements would you like to see?

The board member interviewed, at length, over 20 individuals. Not having been approached in this way, some parents were reluctant to be critical, but did share their concerns when assured that the information was wanted in order to improve the program.

What people liked about the program was not good paperwork, but typically had to do with staff and relationships. The evaluator reported: "As I conducted this evaluation, I have been awed by the incredible amount of respect and love that the people I've talked with have for . . . staff. . . . Almost every person I spoke with stated in one form or another what one parent said: '. . . staff are so kind and caring. They're the real strength of Bayberry'." The progress made by residents was also salient. Statements like "Bayberry has done 100% more for _____ than all the others (state hospital, other facilities) put together" were common.

Concerns focused typically on the future. "Bayberry partly scares me and partly pleases me. It pleases me that ______ is doing so fantastic, but it scares me that s/he might have to leave, and I don't think s/he is responsible enough."

The predominant recommendation for improvement was to continue a good thing. One parent, for example, said: "What they're doing works. Don't change anything." If this is all that came from the evaluation, it would not have served its purpose. By waiting for respondents, and by reassuring them, several specific recommendations were made. They included:

going to camp once a year;

getting a lock on the bedroom door;

getting a job at the sheltered workshop;

more sports: soccer, volleyball;

living in the same town as mom and dad (40 miles away);

better benefit plan for staff (e.g., payment for some holidays);

more education: reading, writing, diction classes;

more fire drills;

more choice among chores around the house;

vegetable garden in back yard;

purchase of a freezer;

more staff meetings;

better minutes of staff meetings; and

closer age range of residents.

These straight-forward recommendations for improvement were as helpful in improving the quality of life of both residents and staff, as multi-page lists of deficiencies handed to the agency by health facility evaluators. The focus of recommendation was:

activities and choice
individualization
safety and well-being
staff benefits
ways to economize on use of resources

Interestingly enough, nothing was said about more or better paperwork, or even about the physical plant -- the priority values embedded in the quality assurance process, and in licensing and certification practices.

About the Author and the HCHF

John Shea

John Shea, Partner in the firm of Allen, Shea, and Associates, spent nearly 10 years, from 1979 to 1989, providing residential services for adults with developmen-tal disabilities. The non-profit agency he headed, Bayberry Incorporated, has two group homes: one, an ICF/DD-H; the other, a Level 4, negotiated rate home. John has a Ph.D., in economics from Ohio State University; taught and did research at the University of Santa Clara, The Ohio State University, and the University of California-Berkeley. From 1973 to 1979, John was a Senior Fellow with the Carnegie Commission (and Carnegie Policy Council) on Higher Education. He is the author of over 40 books, articles, and reports. One related to this booklet is Looking at Licensed Residential Services in Your Community: A Guide for Californians with Developmental Disabilities, Their Families and Friends. John has several children. His son Joe, who is challenged by autism and severe mental retardation, lives in the ICF/DD-H John helped create. At home, John and his wife care for six foster children with developmental disabilities, along with their own children, in a small family care home.

The Human Conservancy and Housing Foundation (HCHF)

Each year the North Bay area (Napa, Solano and Sonoma counties) receives money from the State to start new programs. This money (called the Program Development Fund, or PDF) comes from the fees that parents pay when they have minor children living in out-of-home placements and from federal contributions.

As a result of town meetings held in the area in the Spring of 1988, developing new and additional housing options became a priority for spending those program development funds. The Area Board and the Regional Center sent out a request for proposals (RFP) seeking applicants to start "... a non-profit foundation which would develop and coordinate residential support services for people with developmental disabilities...."

The grant was awarded to Allen, Shea and Associates and a 10-month contract was signed on September 15th, 1989. The PDF contract called for the completion of a number of activities which included: development of a non-profit corporation; obtaining continuation funding; recruiting staff for the foundation; providing technical assistance for each county in starting alternative residential support services; and, providing information to consumers, parents, advocates, service providers and interested community housing agencies and developers on practical ways to increase housing options.

Over one year later, The Human Conservancy and Housing Foundation is a non-profit public benefit corporation (pending tax exempt status). Our bylaws state that the specific purposes for which this corporation is organized are: "...(1) acquiring low-cost housing and keeping it affordable; and (2) developing , promoting and providing alternative, community-based living arrangements...such as cooperatives and shared housing...." As the embryonic Foundation enters post-grant life, what will it offer people with disabilities and their families? A consensus is emerging to provide services to individuals, families and agencies able and willing to collaborate with one another. Basically, we want to identify the support that people need to live where they want to live, and to build cooperative service arrangements around them.

The Human Conservancy and Housing Foundation will continue to work on ways to help people with disabilities and their families look at their dreams, hopes and needs and work out ways to meet them, one person or family at a time. That's the way it should be!

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