HEALTH ADVOCACY BULLETIN The Journal of the Health Advocacy Program at VOLUME 8, NUMBER 1 SPRING 2000 Three Decades of Organizing: Observations on the Future from the Past By Terry Mizrahi, Ph.D. ever since), the flourish of visible social cial work has been largely ignored by or work activism in schools of social work is unknown by the greater world of so- uch of social work at the and in social work agencies quickly di- cial change, where most community or- end of the 20th century has minished. Community organizing was ganizers, advocates and policy change a “back to the future” ring replaced at first with a shift to planning agents are not social workers. In that to it. “Community” is back and policy in the 1970s. Then, by the mid- sphere, social work has been either iden- Min vogue, as a context and as method and 1980s (with a few exceptions), it almost tified with a clinical/mental health career level of intervention. Those of us who be- disappeared as a major area of curricu- or with the public child welfare and pub- gan our social work careers in the expan- lum and career path, or was submerged lic assistance sector. At best, social work sionist era of the 1960s saw community within a more constricted administra- has been viewed by progressive social organizing grow within and outside of tion/management or “macro” track. change groups as helpful in its counsel- social work. Yet even then, while it During this same time period, social ing role, and at worst, as a social control seemed like the place to be, exciting, ro- work activism was primarily geared to agent for an oppressive society. mantic even, it still represented a small creating a profession, modeled on law My introduction to social work in the place and minority position in the pro- and medicine. Its goal, to gain control 1960s was through a volunteer experi- fession in spite of the rich tradition in over the organization, structure, and re- ence during college in a settlement house which it was embedded. The schisms lationships with clients, saw some mea- in City, where grant and local between clinical and macro level inter- sure of success in law and regulation at government initiatives focused on im- ventions were there even in the friendly the federal and state. Currently however, proving the conditions of housing, times, when it felt like the community or- managed care is stifling the autonomy of schools, welfare, the courts, and hospi- ganizing/social change perspective had all clinical professions, including social tals for low and moderate income New a disproportionate influence on the field, work. Yorkers. The model of service then was given the relatively few students, faculty Beyond the historic marginalization of “case to cause to case,” without neces- and schools with such concentrations. community practice within the dominant sarily labeling it as such. There was a feel- As the political climate began to shift professional social work paradigm, the ing that doing for oneself was inextrica- (and it has been moving to the “right” community organizing component of so- bly intertwined with doing for others. It appeared that people participated in community activities to better themselves In This Issue and their neighbors. Three Decades of Organizing: Observations on the Future from the Past...... 1 Staff at that settlement house were both committed and competent; they HAP Goes International...... 2 were about providing services, but they Searching for Grace: The View from Inside the Cage ...... 3 were also about “empowerment” of dis- enfranchised and marginalized people Health Advocacy on the Little Screen ...... 5 and groups. There, it was white ethnic Profiles in Advocacy: Irma LaGuerre ...... 7 poor and working class constituencies of all ages who needed voice and visibility. Conversation with Flavorful (Alice) Herb ...... 9 The settlement created programs and Maximum Security Health Advocacy ...... 11 structures inside and outside its doors for that to occur. “The personal is political” Fordham Professor Bruce Berg Joins HAP Faculty ...... 12 is not just a slogan; it translated into the Spring Placements ...... 15 context and process of the work I began to do then. Reciprocity was the watch- word; there seemed to be a recognition Plus of the mutual benefits to be derived from From the Editors ...... 2 doing for others. We were practicing a “strengths” perspective before it was for- Director’s Desk—Opportunities for Advocacy ...... 13 mally conceptualized. The recent re-

1 Continued on page 4 From The Editors: HAP Goes

As pioneers in a new field, health advocates are still defining their roles and re- sponsibilities, as well as the education they need to do their jobs. In the broadest International sense, health advocates are all who take action in support of patients and their fami- team of HAP faculty and lies. This inclusive definition reflects the reality of our fragmented health care sys- former students gave a well- tem, in which it is necessary to maneuver through many points of contact. received workshop at the The list of those who can and do act as advocates is long. Doctors, nurses and 28th annual meeting of the So- other clinical professionals, teachers, social workers and therapists, journalists and cietyA for Healthcare Consumer Advocacy writers, development experts and PR firms, employees of local, state and federal last fall in Toronto, Canada. About 35 people attended the optional one-day ses- agencies, attorneys and lobbyists, police and court officers, and patients and fami- sion, where they heard presentations by lies, may perform advocacy functions. program director Marsha Hurst, Terry Social workers have responsibilities that often require them to act as advocates. In Mizrahi, Alice Herb, Rachel Grob and this issue we focus on social work as advocacy, with a lead article by Hunter College Deborah Hornstra. Herb and Hornstra also and Sarah Lawrence College professor Terry Mizrahi that takes a sweeping macro headed breakout sessions the next day in view of thirty years of pro-active social work. Advocate and social worker Denise Arieli ethics and the Internet, respectively. A list gives us the micro view with her profile of one Native American mother in New York of advocacy links used in the Internet ses- who was forced by her child’s grave illness into becoming an advocate. In future issues sion is posted on the HAP website at http:/ /www.slc.edu/~health/Torontobook we will highlight the work of other professionals who function as advocates. marks.htm. Audiotapes of all sessions can Of course, many advocates are, or once were, or will be, patients or family mem- be ordered on the SHCA website at http:/ bers themselves. From the need to fight for their own rights, people develop the /www.shca-aha.org. skills necessary to advocate effectively for others. Because the patient’s perspective The all-day workshop was designed to is of such central importance to advocates, the Bulletin is pleased to announce the acquaint professionals in health advocacy inauguration of a new feature called “The Patient Eye.” We begin the series with a with master’s level learning and to intro- first-person account of “what it’s like” by a patient with a very serious condition, our duce them to current critical issues in health care policy and organization. The present- co-editor Karen Martinac. ers also sought to further the group’s un- With this issue we are extremely pleased to welcome Deborah Hornstra as new derstanding of the use of advocacy tools co-editor of the Bulletin. We send our profound thanks to former co-editor Irene and techniques, including new media, for Selver for her three years of dedicated service to this publication, and our best wishes solving problems at the individual (case), to her in her new position at Gay Men’s Health Crisis in New York. collective and institutional levels. The ulti- We are thrilled to be associated with what we hope will become an increasingly mate goal of the HAP crew was to get the valuable publication in health advocacy. Please contact us at any time with story participants thinking of themselves as core change agents in their communities, agen- ideas (your latest project, perhaps?), and drop us a line if you know anyone we cies and institutions. should ask to write for “The Patient Eye.” Over 200 health advocacy professionals, —Karen Martinac and Deborah Hornstra most of them hospital-based patient repre- sentatives, attended this year’s SHCA con- http://www.slc.edu/~health ference. The Toronto setting insured a larger-than-usual number of Canadian par- ticipants, which made for lively discussions The HEALTH ADVOCACY BULLETIN is published twice a year by of differences between the health care sys- the Health Advocacy Program at Sarah Lawrence College, One tems in Canada and the U.S. Mead Way, Bronxville, New York 10708. The Society for Healthcare Consumer Advocacy was founded in 1972 as the Na- Editors: Karen Martinac tional Society for Patient Representation. A Deborah Hornstra personal membership group of the Ameri- can Hospital Association, SHCA has over Program Director: Marsha Hurst 1000 members—not only patient represen- tatives but also physicians, nurses, social Production: Riverside Resumes workers, and others employed in hospitals, Phone: Karen Martinac (253) 761-3070 [email protected] health maintenance organizations, home Deborah Hornstra (609) 799-7978 [email protected] health agencies, long term care facilities and other health-related organizations. For in- E-mail: [email protected] formation on their 2000 meeting in San An- tonio, Texas, or to join the organization (in- All material in the HEALTH ADVOCACY BULLETIN is the property of the dividual rate is $125/year, group discounts authors and may not be reprinted without permission. Opinions expressed are are available), visit their website at http:// not necessarily those of the editors nor of the Health Advocacy Program. www.shca-aha.org.

2 THE PATIENT EYE Searching for Grace: The View from Inside the Cage By Karen Martinac, M.A. for the surgery itself leaves me in the shouting turf war with an ortho resident charge of a fourth-year resident and is over my head in the ICU), to the friends ren’t you grateful to the doc- inexplicably content to rely on second- and family who stuck close by and tors?” a friend inquired over hand accounts of my recovery. watched out for me, to the MRI tech who the telephone. Moments went And yet, there is the looming impor- stood up for me (not the radiologist who by while I sucked in my tance of acting grateful - and cheerful - said halo pins were not supposed to heat breath.A Grateful. Grateful. . . The answer regardless of how one really feels, even up in the machine and burn the patient’s finally slipped out. “No. At least not yet.” if one feels absolutely terrorized by head and to “do it again”), to the medi- It seems as if one is supposed to feel medical procedures “they” consider cine doctors for their patience and daily grateful. After all, I am still alive, not at “help,” and has no idea if the universe care, for all the random kindnesses (not all a sure thing before a cervical spine is even going to allow one to live in any pity) that came my way. fusion a few months ago. And the numb- manner one could consider acceptable. I am grateful for the strength and ness and clumsiness in my arms and legs What does one do with so much fear? wherewithal and just plain orneriness to is receding. Nearly gone, actually. I’m Fear, not of dying, but of what living insist on what I needed, or would not alive, I’m not paralyzed, I have a safe may require. To be cranky, even hostile, allow, in a situation where disaster warm place to live. I should be feeling is, to a totally dependent patient, to risk loomed everywhere (staying alive in a grateful. And I am, to my own stout an equal reaction, even abandonment, hospital is no mean feat). And for the heart and power to heal. But—to the doc- by the caretakers. Unacceptable risk. To determination to preach to all of you tors? encapsulate the fear, as an oyster pro- advocates out there: when you need to

The truth is, it’s damned difficult to tects itself from a grain of sand, to sur- deal with a cranky patient—look feel grateful when there are four pins round it with layers and layers of pref- around, maybe the patient is entitled, bolted into my skull, my entire upper erably iridescent conversation, curiosity, and it’s your job to see that he/she’s not body is encased in metal and plastic dia- humor and “courage,” seems the only penalized for that. And next time you bolically called a “halo,” so heavy I can- safe course. But the effort is monumen- start to say that he/she/they/it is “just not right myself from here to help you,” consider how that a lying position and “help” might look to the patient. Mod- sufficiently ill-fitting ern medicine can be pretty brutal. Can to not allow my back ‘‘ you put yourself in the bed, in the halo, to straighten when I in the wheelchair, in the heart and mind stand (doctors do not I should be feeling grateful. of a person living, or trying to live, with care: one size fits all a serious problem? Can you always re- and it’s not them). It’s And I am, to my own stout member, no matter what else inter- difficult to feel grate- feres—and plenty will—that the first ful to people who de- heart and power to heal. face of advocacy is human? Even I as a cide I will wake up on ‘‘ patient sometimes had trouble remem- a ventilator and be But—to the doctors? bering that there was a person inside all taken off all medica- the hardware: it just took so much ef- tion so we can all be fort. sure I can breathe, but Maybe, when some of the fear has re- who don’t tell me any treated, and I get over feeling tortured, of this before, during and am better adjusted to living with a or after. Difficult to feel grateful to doc- tal, prone to breaking down into tears permanently stiff neck (which is more tors who tell me at 7 a.m. that my 12- or anxiety attacks. No wonder periodic complicated than you think), and maybe hour surgery of the day before went per- retreat into Valium or a morphine drip come to terms with feeling so appalled fectly and return a few hours later to say seems a welcome respite from the effort. and angry at my attending surgeon who that actually they think I need another I am grateful to the competent, caring was capable of reconstructing a collaps- procedure and want an MRI right away nurses (not the ones who couldn’t bother ing neck but not of understanding his and my ICU nurse is on the phone fend- because the shift ended in five minutes), own power over his patients, maybe I ing off Radiology and explaining that I the world-class surgeon/department can thank “the doctors” for saving my cannot be in Radiology right now be- chairman/human being who’s known life. cause I haven’t even been extubated yet. me for 20 years and came to see me ev- Difficult to feel grateful to a surgeon in ery day (including Saturday) even whose hands - and ten years experi- though I was not “his patient” (not the Karen Martinac, HA’89, is co-editor of this ence—I have placed my life but except neurosurg resident who conducted a publication.

3 Three Decades of Organizing Continued from page 1 newed interest by settlement houses and became the ethos of the liberal ideology Other times that has meant taking over other social service agencies in “commu- of the 1960s; that is, a belief that political those structures; and still other times, it nity building” is a recognition of a need involvement and equality of opportunity has meant staying away from them and to return to their roots, albeit would end poverty. The demands for creating alternative programs. Profes- reconfigured to fit these times. community and client inclusion, sup- sional community organizers and plan- “Mobilization for Youth,” the first ported by many progressive bureaucrats, ners, including social workers, have comprehensive government initiative to resulted in formalized mechanisms for worked with all three configurations. combat juvenile delinquency and the heretofore disenfranchised people to par- Those professional community orga- forerunner of the anti-poverty programs, ticipate in the programs that affected nizers including myself, who have also came into being during the early them and their communities. Voting helped groups gain visibility and a col- 1960s. I was a graduate social work stu- rights was only the first step toward en- lective voice, recognize how essential it dent doing field work then, and I got an- franchisement. Community control, is to have knowledgeable and commit- other taste of moving from the individual neighborhood power, and welfare rights, ted people working on the inside and to the group to the system and back were demands that ultimately brought outside. Yet, we understand how diffi- again. While there were tensions even people from the outside to the table. cult it is to keep the momentum going then about whether MFY’s goals, and Indeed, by the time the 60s ended, al- on the outside in order to be effective on indeed those of the whole movement, most every government entity had cre- the inside. However, it is a visible orga- were the promotion of individual or ated a structure, and at times a formula, nized presence from the community out- group mobility, the solutions for achiev- that mandated some form of structured side that creates pressure on the allies ing “equality of opportunity” seemed participation. Social workers were part who work for the system they’re seek- simple. Bring people together and they of those movements and many were ing to influence. This then bolsters their would articulate their needs and prob- hired to implement those guidelines. position and provides a constituency nec- lem-solve. Provide cogent arguments for New careers in organizing and planning essary to justify needed changes. At the the need to improve conditions and those were predicated on participatory and ad- same time, it is difficult to keep up the in power would acquiesce. Expose un- vocacy planning models, with multiple momentum for fundamental change just policies and they would be changed. goals: giving a formal voice to the disen- from the inside alone, given its incremen- Document the environmental obstacles franchised in their roles as tenants, par- tal, negotiated, and potential coopting that prevented people from being all that ents, patients, service recipients, mem- nature. they could be (i.e. from “maximizing bers of racial and ethnic minority groups; Social workers in “macro” planning their potential”), and the system decision- developing or improving programs that roles have served in roles on the inside makers would stop “blaming the victim.” better met their needs; and positioning and outside, and have also initiated al- Obviously, it wasn’t then and isn’t clients for jobs that led to educational and ternative models to traditional health, now that simple. But in my view, there economic mobility. housing, education and human services were some important differences then The debates then and now in the com- in a variety of positions. Sometimes these that one cannot take for granted 35 years munity organizing, planning and devel- were developed in traditional non-profit later; first, government, especially at the opment fields (both inside and outside agencies; others were created by plan- federal level, was more friend than foe social work) have been between those ning and coordination bodies, and even (it was viewed as part of “the solution,” who saw the demand for and subsequent occasionally by protest organizations rather than part of “the problem”); sec- development of participatory structures who acquired resources to develop alter- ond, public and foundation funding and as inherently coopting and ineffective, native programs. Yet, without a recogni- other resources to carry out local orga- and those who saw them as the “solu- tion of the different, but connected roles nizing and planning were available with tion” to disempowerment and disaffec- of those on the outside in advocacy or seemingly fewer restrictions and caveats; tion; between those who saw the need to program development roles and those on third, a philosophy that services and em- build client run organizations or alterna- the inside, a “divide and conquer” strat- powerment were connected translated tive agencies/services and those who egy is more easily utilized by those op- into formal program guidelines. saw protest and mobilization as the way posing change. For example, most of the There was also a strong belief back to gain benefits and empower groups. directors of the 42 social change organi- then that doing with was better than do- Monitoring existing institutions and zations studied by Mondros and Wilson, ing for—a change from the traditional holding those with the resources and au- organized from a single ideological and social work health and welfare planning thority to provide services accountable strategic perspective, ignoring or oppos- council model of the 50s. Indeed, a ma- continues to be the agenda of organiza- ing others, often to their detriment. jor ideological construct of the 60s was tions and coalitions seeking equitable and The role for community practitioners client/resident/community participa- quality services for society, be it schools, today is in making those connections be- tion (depending on the locus of interven- housing, hospitals and health care, the tween the inside and the outside, and rec- tion), in formulating agency and public environment or the workplace. These ognizing that while working in one policies, in developing and implement- groups are not willing to let those who sphere, others need to be working in the ing services, and in evaluating programs. control the major service sectors off the other. It’s not an either/or situation. “Maximum feasible participation of the hook. Sometimes that has meant pressur- Some groups make the transition effec- poor” was not just a requirement of the ing for a reconfiguration of their priori- tively from “adversarial” (outside) and Economic Opportunity Act of 1964: it ties or a reallocation of their resources. “advisory” (inside) advocacy; others 4 Continued on page 5 Three Decades of Organizing Continued from page 4 need to remain in their original roles, sup- credentials to evaluate practice. Corporations are dominating health and porting and challenging when necessary Second, accompanying deprofession- human service industries, and limiting those who move into the inside roles. alization is the downsizing and deregu- our view of the public domain to an ex- Social workers in alternative service de- lation by government at all levels. The tent barely anticipated in 1980 when velopment are also needed to prefigure US has moved far to the “right” since the President Reagan took office. a more just and open society, recogniz- 1960s, politically, ideologically and eco- Where government funding or over- ing that models alone, without an orga- nomically. This is not just a time of devo- sight is still in the picture, it appears to nized political constituency, won’t guar- lution, i.e. the transfer of responsibility be contracting with corporations and antee that policy makers share power or from the Federal to state and local gov- other proprietary entities; the latter sec- restructure policies, priorities and pro- ernments, but an abdication of responsi- tor assuming a greater role in education, grams. Social workers in grassroots or- bility by government to meet human health care, corrections, and child wel- ganizing, in coalition-building, and in needs by limiting resources and entitle- fare in many parts of this country. One planning and program development are ments, and lowering expectations about pervasive model moving forward under all essential. While macro curricula in- what government can and should pro- the banner of limited and inefficient gov- clude the strategic application of differ- vide its citizens. And this includes the ernment is vouchers, currently being pro- ent models, greater attention needs to be Clinton/Gore administration, not just the moted in a variety of areas: housing, edu- paid to evaluating interventions and out- traditional Republican conservatives, as cation, social security, etc. At the same comes of community. evidenced by the former’s signing into time, public service employees are being First, this is a time of deprofession- law and implementing the Personal Re- cut, and greater demands and restrictions alization in US society, promoted by po- sponsibility and Work Opportunity Act are being placed on the contracted or litical and economic leaders who extol the of 1996, which replaced the 50-year-old funded non-profit, community-based virtues of the marketplace, and implic- social entitlement, Aid to Families with agencies. Critics see this as a further ero- itly or explicitly criticize professionals (be Dependent Children. sion of public responsibility and account- they teachers, physicians, or social work- Third is the concomitant move to ability and a reduction of resources for ers) for both their ineffectiveness and pro- privatization—by many of the same gov- basic services that disproportionately af- tectionism. Professionalism as an ideol- ernment and political leaders— who fects urban lower class African-American ogy indeed attempts to create a mo- point to both the marketplace (corporate and Latino communities. Ironically, nopoly on a set of roles and functions, to “profitization”) and charity (volunteer- the extent that there is agreement on what ism) as the venues to meet human needs. Continued on page 6 those encompass. The elitism inherent in any organized group, even those that perform an important societal function (i.e. healing), without public scrutiny, is bound to engender distrust. This was Health advocacy most clearly demonstrated in growing criticism of organized medicine by pa- tients, the public, politicians, and other on the little screen professional groups in the 1960s after this quintessential profession had gained complete control over the education, or- AP graduate Leslie Bank was well as a quiz on patient relations. She ganization, licensing and financing of its the principal consultant for also appears in the video as an expert in work. the patient relations video the field. Today, the challenges to professional STAT: A Prescription for Good “STAT is not everything I know about hegemony which had come from liber- HPatient Relations, available from The doing patient relations,” Bank empha- als (inside government) and the radical Greeley Education Company online or sizes, “It’s only skin deep, but it presents left (outside government), are coming by calling 1-800-650-6787. The video sells useful simple constructs.” The video in- from the political and economic “right.” for $255 and can be previewed on the cludes segments on JCAHO’s consumer All professions today are experiencing Greeley website at http://www.greeley. complaint hotline, patients’ rights legis- the usurping of clinical judgment and com (RealPlayer required). lation, and the U.S. Attorney’s interest competence by outsiders. Managed care Bank, who has been Director of Guest in quality of care and compliance. Bank and other insurance corporations impute Relations at Greenwich Hospital in Con- has also written Complaint Clinic and The the very essence of what it is to be a pro- necticut since 1986, wrote most of the Anatomy of a Complaint, but hopes those fessional, that is, the claim to a unique script several years ago. are not considered sequels to STAT… constellation of knowledge, skills and Greeley developed an interest in pro- In addition to her full-time duties at values of benefit to individuals and soci- ducing training tools for hospitals, and Greenwich, Bank is a consultant and ety. The outsiders who work for exter- hired a director/producer who used speaker in the area of patient-friendly nal funding and oversight organizations Bank’s script on patient relations and billing, a topic on which she addressed are removed from the clinical situation problem resolution as a starting point. the New England Healthcare Assembly and setting and often do not possess ap- Bank was subcontracted to add several last spring. propriate professional specialization or scenarios modeling various situations, as 5 Three Decades of Organizing Continued from page 5 many states and localities are assuming tury, there are several assumptions un- involvement. a greater social control role over people derlying these interorganizational and The expanding number of students needing benefits and services in those communitarian agendas that cannot be concentrating in community organizing, same service sectors and in work-related taken for granted. The complexities and planning, policy and macro practice au- welfare initiatives, replacing rehabilita- contradictions created need to be ac- gers well for the growth of the macro end tive with punitive policies. knowledged and addressed. of social work. At the same time, there is “Compassionate conservatism” is the First, an assumption that clients/com- also a need for systematic, profession- late 1990s watchword of those Republi- munity residents are represented by the wide campaigns to position social work cans who want to distance themselves various organizational actors or them- community practitioners in interor- from the extreme harshness of right- selves have formed their own organiza- ganizational and grassroots leadership wing ideology epitomized by Gingrich’s tions. In fact, rarely can individual clients careers. Greater promotion of the social Contract with America (1994), prevalent effectively compete with people repre- work profession to the wider community in the early and mid-1990s. The former senting professional and organizational development and advocacy sectors is es- group still espouses tax cuts, voucher entities. Second, an assumption that defi- sential so that they identify the BSW or systems, and limitations on entitlements, nitions of the problem and solutions MSW as a necessary qualifications for while placing greater responsibility and posed by the various constituencies their positions. Promoting lateral and stress on individuals and families to do (which now includes the business com- vertical career mobility with adequate more, without appropriating the neces- munity more overtly), can be reconciled. compensation are also essential. sary resources and supports. Moreover, To the contrary, ideologies shape those Community practice has had a rich with the advent of market solutions to perspectives, and create value dissensus and complex history within social work. social problems, many non-profits are be- as often as consensus. Furthermore, an In politically and economically conserva- having like their profit-driven counter- assumption that these various sectors of tive times, its role has been fraught with parts, competitive and concerned more society have comparable influence in the contradictions; yet, it tenaciously and cre- about survival and expansion than about decision-making process and structure. atively has anchored its place in and in- serving and advocating for needy popu- To be sure, a parent organization does fluenced the direction of the profession. lations. not have the same clout as the Chamber As we end the 20th century and the first The fourth trend that has resurfaced of Commerce, even if both groups have century of social work, hopefully we will in this decade may counter or be conso- “one vote in the organizational body.” emerge with the perspective that we nant with the above mentioned trends, Fourth, an assumption that it is more ef- must continue to focus on the individual depending on political and economic ficient, i.e. cheaper, to bring multiple and collective levels simultaneously. This consequences in the long run; namely, groups together as opposed to funding is not at all to imply that the real world there is a concomitant expansion of multiple ones. In reality, it takes more of social work practice requires a reduc- interorganizational collaborations and skill, time and resources to calibrate all tionist approach to a least common de- partnerships as solutions to social prob- of the parts of a complex collaboration, nominator, generalist framework, but lems, coupled with the revival of the call although the process and product may rather requires the configuration of a se- for citizenship and civic responsibility. be more effective in the long run. Fifth, ries of highly competent, multiple and in- Supported by large foundations and an assumption that many of these initia- terconnected method specializations. some Federal agencies and their state tives are about creating and expanding Rather than conceptualizing our task hi- counterparts, including the Departments resources rather than about the reorga- erarchically as moving from the simple of Health and Human Services, Educa- nization and coordination of existing re- to the complex, we could reconfigure it tion, and Housing and Urban Develop- sources. If resources are scarce to begin as a kaleidoscope, where every interven- ment, the thrust is to mandate that orga- with, the strengths/asset-based model tion shifts the pattern and creates a whole nizations representing various constitu- may not be enough to solve social prob- new vision of possibilities. encies in a community come together to lems. Sixth, an assumption that outcomes This is our challenge, our chance and address social needs. Presumably, be- and measures for success are apparent, our charge. cause various sectors have an interest in agreed upon, and value-neutral. At the solving social problems such as infant very least, ideological, power and re- Editor’s Note: A longer version of this article mortality, substance abuse, teen unem- source differences in the process of goal will be posted in full text, with complete cita- ployment, child abuse, housing and busi- setting, and the criteria by which to evalu- tions, on our website at http://www.slc.edu/ ness deterioration, there are attempts to ate goals, need to be recognized before ~health. harness a range of expertise and re- they can be managed or reconciled. Fi- sources to solve them. Moreover, the nally, an assumption that democratic par- Terry Mizrahi, Ph.D. is Professor, Hunter goals of many of these programs are to ticipation at the grassroots level by itself, College School of Social Work and Director, create local ownership and to build a regardless of the racial and economic Education Center for Community Organiz- unified community in the process. composition of that community, is pro- ing at HCSSW. She has written numerous If the progressive, yet pragmatic so- gressive and inclusive. Given the long books, monographs, guides and articles on cial planning and community organizing history in the US of the various “isms,” coalitions and collaborations, and is a leader framework from the 60s and 70s is to inequitable, reactionary and protection- in the National Association of Social Work- have a meaningful impact on commu- ist NIMBY (“not in my backyard”) poli- ers and the Association for Community Or- nity, civic and client life into the 2lst cen- tics can be the result of increased civic ganization and Social Administration. 6 and an epidural whose effects had to be reversed when it was discovered that the Profiles in Advocacy: drug had stopped the contractions. Af- ter twenty-eight hours, on February 22, 1992, a baby girl, weighing 8 lbs. 11 oz. and measuring 22 inches, was born in Irma Laguerre Beth Israel Hospital. Indian girl on the package, the third prin- Named for her matrilineal heritage By Denise Arieli, M.S.W., C.S.W. cipal, Lady Tian, and the star, respec- and the spirit that kept her mother alive, You can only teach what you need to learn. tively. A graduate of the Taina-Faith Laguerre and mother would —Anonymous School of Music, her acting credits are spend the next four days in the hospital impressive. But perhaps her greatest role so that doctors, worried about the baby’s arrive at the offices of Nitchen Inc., is the one she plays in real life as the skin tone discoloration, could observe. located on 164 West 100th Street in mother of a child with the rare metabolic Irma recalled the infant as being “sweet the Trinity Church, an old limestone disorder phenylketonuria (PKU). and sleepy” but she grew concerned structure over 100 years old. I gin- It is ironic that the Nitchen offices and when Taina refused to be breast-fed. Igerly begin my climb down its stone the majority of Irma’s work would cen- Nurses at Beth Israel assured the new steps and into its belly, the basement. ter around the Native American culture, mother that the baby was “normal” and This is not as easy as it sounds, for the since she had been taught upon her ar- at the end of the fourth day mother and builders have inlaid the steps, mere rival in the United States to “blend in.” child were sent home. They had been cobblestone shards, horizontally and A well-intentioned father, who knew the back barely two days when the Depart- vertically to form a crisscross pattern. stigma that comes from being different, ment of Health (DOH) called on a Fri- Visitors must descend cautiously, dip- delivered this directive. Armando was day. DOH told her that a routine test ping first toe and then heel, or risk run- an Aztec Indian who overcame his deaf- performed on her newborn child re- ning out of real estate in which to land ness to become a college professor in his vealed a positive test for the disease phe- the foot. The whole process takes longer native country of Puerto Rico. He mar- nylketonuria (PKU) and that her baby’s than I would have thought and as a re- ried at age 50, late by conventional stan- levels were at seven, an indication of sult, I am late. The road to advocacy dards, taking Carmen to be his bride. In classic PKU. Their instructions were to winds similarly. It is a day-by-day stick- 1960, the family of ten emigrated and take the baby to a specialized clinic at to-it-ness marked by on-the-job learning. settled in a railroad flat in the Bronx, an Bellevue Hospital first thing Monday Results are the fruit of patience and per- apartment of long corridors and few morning. When Irma inquired about sistence rather than any formal training doors. But despite the proclivity toward PKU, the friendly voice knew only to or adherence to a prescribed technique. assimilation, all the children were en- say, “It’s some sort of enzyme thing.” This story is a lesson in that. couraged to remember their heritage. Seven years post-diagnosis and Irma’s In the spirit of full disclosure, I must The Nitchen offices bear out Irma’s per- recollection is as sharp as ever. So too confess that this is not my first exposure sonal and the more generalized cultural are its associations, which are vivid to Nitchen, Inc., whose name means contradictions of being a Native Indian enough to produce fresh tears. “our children” in the Lenape language. and an American. Here, computers vie PKU is a rare genetic condition, an The Lenape tribes are true native New for space with earthenware pots. The fax inherited metabolic disorder carried Yorkers, miners who settled the land at machine competes with over-flowing through an “autosomal recessive” gene. the turn of the century, giving the region plants, wool tapestries and pictures of For a baby to be born with PKU, both the moniker “Red Harlem.” The organi- Native American elders crowd out the parents must be silent carriers. But even zation was formed in 1994 by Yvonne public health posters, and boxes of her in such a case, there is still only a one in Beamer and sponsored by the State Of- daughter’s medicine share desk space four (25%) chance for each pregnancy fice of Mental Health to provide support with macrobiotic cookbooks. that the baby will have PKU. PKU af- services and socialization opportunities Irma was a successful stage performer fects one out of every 10,000 babies born to families of Native American heritage when, in 1991, she decided she wanted in the US and several hundred babies are whose children had medical, behavioral to be a mother too. Despite being con- diagnosed and put on diets each year. disorders, or were “at risk” for develop- sidered a high-risk pregnancy due to her Newborn screenings for PKU started in ing these. Today, the organization hosts age, she continued to accept demanding the 1960’s. Because early detection has the Family Awareness Network (FAN), roles. Eventually she developed anemia, been correlated with positive outcomes, publishes a newsletter, runs mentoring pre-eclampsia (separation of the umbili- screenings are now carried out through- groups, and offers a variety of work- cal cord), and a slight case of edema. Her out the fifty states and in many other shops. I know the organization well and doctor, Allan Morris, put her on bed rest. countries. PKU can result in mental re- consulted to them as part of my over- Irma and the baby’s father worried that tardation and other neurological prob- sight function in city government. What her medical condition would affect the lems when treatment is not started follows is a profile of one of its founding child and wanted to rule out any genetic within the first few weeks of life. The mothers, Irma Laguerre, who is living conditions. So, aside from submitting to disease arises from the absence of a proof that “you can only teach what you the usual battery of tests and sonograms, single enzyme, phenylalanine hydroxy- need to learn.” Irma devoted the remainder of her preg- lase, that normally converts the essen- If you eat Mazola margarine, caught nancy to visiting genetic specialists as tial amino acid phenylalanine to another the last production of The King and I on well. Her daughter’s birth, though much amino acid, tyrosine. Failure of the con- Broadway or Jun Darian at Lincoln Cen- anticipated, would be a difficult one version results in the buildup of pheny- ter, you’ve seen Irma Laguerre as the marked by contractions but no dilation lalanine, which could be toxic to the cen- 7 Continued on page 8 Profiles in Advocacy: Irma Laguerre Continued from page 7 tral nervous system and cause the severe calls, “as long as I knew what to ask.” their condition is chronic and if left un- problems normally associated with The diet for the most severe form of attended, disabling. Aside from the vigi- PKU. Any child with a level less than 6/ PKU eliminates all very high protein lance involved around diet and nutri- mg/dl does not need to be on a special foods, since all proteins contain pheny- tion, families must absorb steep finan- diet and is not at risk for mental retar- lalanine. Initially, for Taina, all concen- cial burdens. Medical foods such as for- dation. Not every child has the same trated forms of protein had to be elimi- mulas and now bars average $600.00 per degree of enzyme deficiency or needs nated. In general, the diet does not al- month and medical visits could cost the same strict dietary regimentation. low meat, fish, poultry, eggs, cheese, ice $800.00 per month depending on the After reeling from the initial shock, cream, legumes, nuts, or products con- blood tests indicated. Despite her advo- Irma went into supermom mode. Over taining regular flour. The diet is supple- cacy efforts and medical testimonials, the weekend, she researched the disor- mented with special low protein foods Irma’s application for SSI has been de- der in her personal medical library, built (phe foods), which must be carefully nied three times. up from her undergraduate years as a weighed, or measured amounts of fruit, When it comes to formula, a number biology and psychology major. She also vegetables, and some grain products. of states have mandated that insurance consulted with friends, and called her Being a new doctor. “Two words stuck out most,” she mother is recalls, “mental retardation.” Well inten- stressful tioned friends tried to reassure her that enough, but she had “nothing to worry about.” On Irma faced Monday, Irma chose one of the baby’s the next few godmothers to go with her for support. months in a Irma recalls her feeling of

There she saw two premier metabolic state of disorder specialists, Drs. Snyderman panic. and Sansariq who, anticipating her ar- Feedings desperation, exacerbated by the rival, quickly whisked Taina away. Irma were recalls waiting at the nurses’ station for marked by a ‘‘ ‘‘ “what seemed like a lifetime.” When the ritual of mix- lack of scientific information, doctors emerged next, sans baby, her ing, pouring, heart sank. and carefully The next five days were an emotional measuring roller coaster for Irma. She recalls her the formula. resources, or support from a well- feeling of desperation exacerbated by the In the first lack of scientific information, resources, few years of or support from a well intentioned but life, it is criti- intentioned but detached medical staff. detached medical staff. Next came cal to get the waves of anger at the medical special- dosages ists, especially the geneticists she had right. “I was seen during her pregnancy who had not a wreck alerted her to the possibility of PKU. knowing that (Though given her Native American an error at this point could be fatal,” says companies provide coverage. In some heritage and family history, doctors had Irma, who called the hospital to inquire states, The Department of Health pro- no reason to suspect.) Amniocentesis whether a spoonful should be loosely or vides formula. During the first year of does not pick up genetic metabolic dis- densely packed. diagnosis, Irma had health insurance orders such as PKU. As she cradled her In the early days of PKU treatment, through the Screen Actors Guild. She baby in her arms, Irma recalled the an- clinicians believed that the diet had to read her contract carefully and discov- guish she felt as she thought how this be maintained only for the first 6-10 ered a statement extending care in the baby’s life could be lost. The next few years of life. It is now known that cessa- case of a child born with a medical con- days were spent in the hospital on a cot tion could result in serious problems dition. Though this brought her some near her daughter’s bed. Helplessly, she such as drops in IQ, learning disabilities, relief, her plan did not cover formula and watched staff conduct “grounding” behavior problems such as hyperactiv- later she discovered that many other tests, blood tests that determine the ity and irritability, neurological prob- claims were not paid. Unable to shoul- child’s phenylalanine levels. On the fifth lems such as tremors or eczema, and der the financial burden, with her insur- day, with her daughter’s arms full of personality disorders. But due to ad- ance exhausted, in 1994 Irma began tak- track marks from the needles, it was con- vancements in detection and prevention, ing on small acting roles. During this firmed that Taina did have PKU and that PKU has been downgraded to a condi- time, she was forced to borrow money, she would need to adhere to a strict di- tion rather than a disability. This reclas- and rely on public assistance such as etary regimen consisting of two syn- sification has proved a mixed blessing. Women Infants and Children (WIC). thetic formulas: one for calories, the For example, PKU children are not quali- While WIC provided coupons for food, other for nutrients. “The doctors were fied to receive disability payments as including one of the two prescription good at answering questions,” she re- part of Social Security (SSI) even though formulas Taina was on, it did so for only 8 Continued on page 10 Conversation with a Flavorful (Alice) Herb by Deborah Hornstra, M.A. in Harlem, west of Broadway. “It was gramming. Her initial assignment was all refugees above 157th Street,” she re- for a three-month period, but she ended ince 1996, the savory Alice Herb calls in her deep voice with the unmis- up staying 15 years, during which time has been teaching Health Advo- takable New York accent. “I always felt she remarried. After leaving ABC, Alice cacy III, better known as Ethics, like an ‘other.’” formed her own production company typically one of the last courses Not that she let it stop her. A quick and produced a series called Newsweek Staken by students in the Health Advo- study even in a new language, Alice Woman for the fledgling Lifetime Net- cacy program. HA III entails the some- graduated from high school at age 16 work, which she describes as “hard-hit- times contentious discussion of dozens and then polished off a bachelor’s in ting stuff put into a two-hour pink con- of case studies in health care ethics. political science in just three years at text.” During this period Alice also did Many of the cases are drawn from Alice’s Syracuse. Advised to go to law school at a show called “Style” for CBS Cable and own vast experience at the State Univer- a time when very few women were prac- produced the programs “Looking East” sity of New York (SUNY) Health Science ticing law, Alice remembers being flat- and “One World” (shooting in Center at Brooklyn, commonly known tered. “It was not my grand master plan Singapore, Thailand and China for a as Downstate Medical Center, where she to go to law school,” she says playfully, Chinese audience) before she grew is both Assistant Clinical Professor in flashing one of her extra-wide smiles. “I weary of broadcasting. Family Practice and Associate at Law in was only 16 when I went to college, “I got tired of TV in the early 80s; it the Division of Humanities in Medicine. where I really majored in social life.” had sunk to such low levels. While I was Downstate Medical Center began life There were exactly five women in at ABC I had become an adjunct in jour- in 1856 as a dispensary providing care Alice’s class of 125 at New York Univer- nalism at Columbia. One day I took my for poor immigrants, and eventually sity Law School, a situation she found students out, because we wanted to do became the Long Island College Hospi- uncomfortable. “We women lawyers a medical story. I had to talk to the head tal. In 1858, the hospital opened a medi- knew we were tough and smart because of transplantation at St. Luke’s to facili- cal school that was the first in the nation there weren’t too many of us. But it was tate it, and by the time we finished talk- to train doctors by the hospital bedside depressing with no women in the pro- ing, I was fascinated, and he invited me and not only in the classroom. The name fession. I would say ‘I’m a lawyer’ to back to discuss doing some medical “Downstate” came into use after 1950, people and there’d be drop dead si- shows.” when the hospital and medical school lence.” One of the first of her medical shows became part of SUNY. But the law was a good way to pur- was a piece on surgery from a surgeon’s At Downstate, Alice’s responsibilities sue her lifelong desire to fight injustice, point of view. “I went to see all these op- are wide and deep. She teaches an Eth- and Alice originally thought she’d go erations,” says Alice in her investigative ics in Science class, coordinates and co- into labor law. As a newly minted attor- mode, “I became a surgery junkie.” teaches a B.A./M.D. program in collabo- ney in a world where “We don’t hire Meanwhile Alice’s personal life was ration with Brooklyn College, and serves women” was almost a mantra, Alice again thrown into turmoil with the as a resource for the second-year “Doc- took the first job she could get, in per- deaths in quick succession of her elder toring Experience” (part of the medical sonal injury law. This lasted only six son and her second husband. school’s new curriculum). Very capable months, and was followed by a stint in At this point in her life, Alice had an of doing several things at once, she also general practice. Alic then ran a solo epiphany. “I needed a new life, and I interviews applicants for the medical practice in estate law from her home. wanted to do something cutting edge. I school and is a member of the Institu- In her “spare time,” Alice had two thought ethical issues were so profound, tional Review Board. sons with her husband, a Korean War so I made a conscious decision to con- As an ethics instructor, Alice keeps veteran who worked in the television in- nect with bioethics. To get a job, I started people on the subject while insisting that dustry. When he died, Alice used her researching the field and networking just a rigorous understanding and applica- considerable powers of persuasion to get the way I would do for a story.” And tion of ethical principles inform the de- her landlord to evict someone from an- that effort led ultimately to her second bate. These formidable tasks she accom- other apartment in her building to make big career switch. plishes with abundant humor and good- room for her parents. They quickly With her usual intensity of purpose, will, always leaving students hungry for moved in to watch her kids while she Alice set out on her course, going back more discussion at the end of each class. worked, and Alice decided to leave the to NYU for a master’s in law and doing Over coffee in one af- law for her late husband’s field, TV, an internship at Montefiore Medical ternoon last fall, Alice explained that as which had long interested her. That was Center in the Bronx. At Montefiore, a Holocaust survivor, “fighting unfair- her first big career switch. home to one of the first comprehensive ness wherever you find it was etched In 1966, Alice joined ABC as a politi- AIDS centers in New York state, Alice into my being.” The future ethicist came cal researcher, eventually becoming was exposed to the complex issues in- to the U.S. from Vienna as a six-year-old chief researcher and then a producer of volved in AIDS care. Her participation refugee in 1939, settling with her parents documentaries and special event pro- on Montefiore’s Institutional Review

9 Continued on page 10 Profiles in Advocacy: Irma Laguerre

Continued from page 8 and public assistance system, but now · Form 504—children who have life- five years. Ever persistent and resource- Irma had to take on the schools who in- long medical conditions are eligible for ful, Irma continued to research her op- sisted her daughter should be in Special district funds, which pay for a para to tions and with the help of her sister, dis- Education, not because of scholastic apti- attend to the child during school hours. covered that she could apply for dis- tude or IQ, but due to her medical de- Call the Board of Education—Division abled Medicaid-Medical insurance for mands. And, though Tiana was assigned of Special Education Services at your low-income people who had lifelong a para to take care of her during school local district office. conditions. But Taina qualified for lim- hours so that she could remain in a main- · Agency for Child Development— ited Medicaid only, which meant that stream setting, the school still recom- offers free childcare (depending on in- visits and treatment were authorized in mends she be placed in Special Ed. The come) until age 12. Manhattan 212-835- blocks—usually of two to three months ongoing battle to keep Taina living a “nor- 7715; Brooklyn 718-260-6993 (15 visits)—at the end of which, Irma mal life” is fraught with new challenges would have to continually re-apply. daily. Nitchen, Inc. not only advocates For more information about PKU: And, though office visits were now paid, and sustains Irma, but she currently Medicaid had restrictions on the num- works there, using her experience to help · National PKU News—Virginia E. ber and type of formulas it would cover. others. And she never misses an oppor- Shuett, M.S., R.D., Director; and the Na- For example, liquid formula was cov- tunity to engage a parent during her visit tional PKU Network 206-525-8140 ered but bars, solid versions of the liq- to the Mt. Sinai clinic, where she shares · PKU Children’s Network spon- uid, were not. The implications for this information, sympathy, and herself. She sored by the March of Dimes. Also on are not just financial. Given their port- and Taina have come a long way. “I never the World Wide Web—treatment cen- ability, taste, and convenience, the bars set out to become an advocate,” she tells ters, newsletters and links at http:// allow PKU children the option of a more me. But imagine if she had! pkunews.org. normalized lifestyle, or at least one char- · PKU cookbook: cooking for a low acterized by fewer disruptions. This is Resources Mentioned in this Article: protein diet—written by Delia A. Ham- especially important for Taina, whose mock, M.S. R.D. at the NYU Metabolic school day is marked by disruptions for · Family Awareness Network—Irma Disorders clinic. feeding. Laguerre 212-749-9494 In New York City, the PKU Program · Mt. Sinai Hospital-Metabolic Denise Arieli is an M.S.W. who has operates out of Mt. Sinai’s Metabolic Unit—Accepts Medicaid and Private In- developed and monitored programs that serve Unit where the pioneer, Dr. Sansariq, still surance 212-241-8544 children with special needs in the public, practices. Aside from the medical staff, · Disabled Medicaid—Contact the private, and philanthropic sectors. She is the unit has a part-time social worker, a State Medicaid Office currently working as a health care consultant nutritionist, and medical specialists. and is interested in writing for advocacy. Though medical advances have been made and families now have the PKU network, there is still no organized sup- Conversation with a Flavorful (Alice) Herb port group on-site and Irma watches many of the horrors she experienced re- Continued from page 9 peated with each diagnosed case. Re- cently, there has been some effort by the Board was good training for her current end of the spectrum. unit staff to turn this around. The unit work at Downstate. “I am always astonished when I in- sponsors a PKU picnic, holiday parties, Alice’s approach to ethics is non-mor- terview applicants to medical school,” and other one-shot events. The picnic is alizing and non-patronizing. “I’m not a Alice continues. “Good MCATs and a a big draw. Recently, there has been an judgmental person, and benevolent des- 4.0 do not an M.D. make. I’m looking for interest in formalizing a support group potism doesn’t work for me,” she de- heart and soul.” When doctors have that for families. Family support aside, PKU clares emphatically. “I’m opposed to all heart and soul, says Alice, they can be children spend the bulk of their time re- sorts of fundamentalism, to anything too terrific advocates for their patients. lating to adults and experiencing social rabid in any direction.” Alice believes the After all she has done in her profes- isolation. Ironically, mental health treat- proper attitude toward ethics necessi- sional life, Alice calls herself an “acciden- ment is not a core component of medi- tates examining at least two sides of ev- tal” teacher, but says teaching has be- cal care. Perhaps it is the Western ideol- ery issue. “In ethics, there’s always on- come the most satisfying part of her ogy, the mind/body schism, or the ten- the-one-hand this, but on-the-other- work. “I try to do it with humor and dency toward specialization. Perhaps it hand that.” fun,” says Alice as the day goes dark. “I is the lack of funding, trained staff, etc. Not all doctors, of course, are equally am not an academician, but my students Either way, Irma must supplement interested in the difficult issues of bio- are my legacy.” Taina’s medical visits with psycho- ethics. “I’ve done a lot of resident train- therapy. And of course, both mother and ing and there is always a certain cohort daughter belong to FAN. that likes this stuff. Primary care physi- Deborah Hornstra, M.A., HA ‘97, is co- Not only did this mother cum advo- cians, for example, are our natural allies, editor of this publication. She can be reached cate have to negotiate a complex medical whereas neurosurgeons are at the other at [email protected].

10 tense. College-level credits are indeed earned here. Maximum Security The first class I prepared for College Bound was a fifteen-week overview of the Health Advocacy Program curricu- lum. Bedford indicated that there was a Health Advocacy need for exposure to the healthcare sys- tem so inmates could help themselves By Eleanor Cerbone Scarcella, M.S., M.P.S. College (Annandale), Berkeley College provide for their own healthcare and (White Plains), , that of their families on the outside. n the spring and fall semesters of Marymount Tarrytown College, Many are mothers and were caretakers 1999, the Health Advocacy Program Marymount , Mercy in their extended families. All face daunt- at Sarah Lawrence College spear- College (Dobbs Ferry), ing hurdles to recreating their lives upon headed the College’s direct partici- (White Plains), and Teachers College release, among them securing the basics Ipation in the undergraduate degree pro- contribute faculty, funds, and resources of food and shelter, assuring the continu- gram at the New York State Correctional (library access, interns, and volunteers.) ance of health care, and finding a source Facility for Women at Bedford Hills. The first classes commenced in the of income. The college degrees they earn Marsha Hurst, Director of the Health spring of 1997. give them a better foothold in seeking Advocacy Program, saw an opportunity As of Fall 1999, 140 students were en- employment. What was sought from the to address the prison inmates’ desires to rolled in college courses. A 60-credit As- health advocacy class was an exposure explore issues in health care and health sociates Degree and a 120-credit Bach- to the kinds of careers and community advocacy at a conference she attended elor of Science Degree in Sociology with activities the students could participate at the prison in the fall of 1998. I, as a an emphasis on counseling is awarded in. recent HAP graduate with experience in by Marymount Manhattan. Participat- The curriculum of “Social Dynamics teaching and as a past volunteer at ing students must adhere to a strict class of Health Advocacy,” as the course was Bedford Hills, was engaged by Sarah attendance code and maintain a grade called, covered the issues and complexi- Lawrence to develop a health advocacy of “C” or better for credit. Each contrib- ties of healthcare: insurance, providers, course for the undergraduate level and utes ten dollars per semester (their day- official and professional regulation, bio- then to follow up with a course in hu- time jobs pay 50 cents an hour) and 15 ethics and social contract, community man genetics and health issues. The lat- hours of community service within the outreach and empowerment. The pre- ter was a cooperative effort with prison community. sentation of such topics benefited from Caroline Lieber and her second-year stu- A “ Learning Center” has been estab- the addition of guest lecturers from dif- dents in Sarah Lawrence’s Human Ge- lished in the school building with a bank ferent areas of health advocacy — edu- netics Program. of computers to prepare assignments cation, law, public and private counsel- Bedford Hills Correctional Facility is (Internet access is denied all inmates by ing. The students were exposed to New York State’s maximum security state law); a library of donated texts is people who were practicing health ad- prison for women and the reception cen- available for research. The schools’ coun- vocacy in their careers. They also got ter for all women entering the state selors may borrow books through the practice in recognizing, accessing, and prison system. Combined residential Westchester Library System’s interli- evaluating various methods for present- and reception population is approxi- brary loan program. Private funds and ing and resolving issues. mately 800. In 1995, a fifteen-year col- donations are used to purchase class One such class discussed genetics as lege preparatory and college degree pro- textbooks when needed. Teachers may a health issue and the role of counselors gram conducted by was bring in printed materials for class work in educating and advocating for patients. terminated when public funding was and for individual students’ research Two students from the Human Genet- discontinued by the state. One hundred projects. ics program at SLC were our guest lec- inmates were enrolled at the time. The most valuable and accessible re- turers and their enthusiastic review of Organization by the inmates and their source of the program is the dedication their experience that evening and the appeals to prison staff, the college com- and enthusiasm of the students them- matching interest in the subject matter munity of the New York area, and the selves. Some are building upon a few by the students prompted the develop- religious and lay community-at-large, college credits earned during their civil- ment of a new course for the following resulted in the formation of the College ian days. Some are college graduates semester in genetics and health advo- Bound Programs and the nonprofit en- who are attending as auditors. But most cacy. tity known as the BHCF Educational are students who earned their GEDs at “Sociological Perspective on Genet- Center, Inc. The key to this new en- Bedford and are continuing beyond pre- ics and Health Issues” was built on the deavor is private funding and private paratory work to earn undergraduate guest lecturer structure, with two differ- contributions of staff and equipment. In credits. Their writing style is often not ent sets of students from the HGP teach- February 1997, under the leadership of polished and their expressive and delib- ing each week. This had a dual benefit: Marymount Manhattan College, seven erative discourse is not standard the graduate students were exposed to colleges formed the College Bound con- “academia.” Yet their intent and sincer- the “educator” role of the counselor and sortium: Sarah Lawrence College, Bank ity of view and preparedness to encoun- the Bedford students had many people Street School of Education (NYC), Bard ter something new and different is in- serve as sources of information and in-

11 Continued on page 12 Maximum Security Health Advocacy Fordham Professor Bruce Continued from page 10 teraction. Human Genetics Program Di- rector Caroline Lieber and I developed Berg Joins HAP Faculty a course outline that covered the biol- ogy of genetics, the issues of exploration olitical scientist Bruce F. Berg, ways in which federal and state govern- Ph.D., has joined the health ad- and exposure of the human genome, and ments constrain what city officials can vocacy faculty and is teaching a do, and he uses the issues surrounding the scope and intent of genetic counsel- section of Health Advocacy II. such health problems as AIDS, lead- ing — all as subject matter important to PBerg has been at Fordham nearly 20 based paint and asthma as examples. an individual’s understanding and pro- years and is now associate chair of the Berg was a freshly-minted Ph.D. tection of health and well-being. political science department. For most of when he got an offer to teach at Two overriding factors made these that time he has represented Fordham Fordham, and “New York City sounded two courses possible. One is the unique faculty in their contract bargaining, so great” to this Washington, D.C.-area (and oftentimes sorely tested) willing- he has personal experience in negotiat- native who has earned degrees at ness of the authorities at BHCF to main- ing benefit issues, particularly health Franklin & Marshall, Purdue and Ameri- tain a fine balance between the maxi- insurance benefits. “This has given me can University. According to Berg, the mum security status of the prison and a different orientation, aside from my main difference between his students at the intent of the education process which academic perspective,” says Berg. Fordham and those at Sarah Lawrence exposes the students to many outside As the former chair of the Fordham is that “most Fordham students don’t resources (and exposes those of us on the faculty’s salary and benefits committee, have an intense interest in health policy. outside to the prison.) Secondly, Bedford and now as president of the faculty sen- They are interested in public policy in already has a history of tolerating and ate (which Berg says is as example of the general and I have chosen to use health then supporting inmate self-help and Peter Principle at work), Berg has nego- as my example, so they tolerate it. At SLC counseling groups. Bedford had tiated on behalf of hundreds of faculty students are intensely interested in spawned the AIDS Counseling and Edu- and retired faculty, and dealt with Medi- health policy. cation (A.C.E.) program where inmates care and Medigap issues. He has seen “We’ve had fascinating discussions as sought help in dealing with AIDS. These directly the problems that have accom- to what an advocate is. I lean toward an courses brought in a wealth of resources panied the rise in managed care. inclusive definition. I’ve had very little but also gave an academic validity to the “At Fordham,” Berg says, “we’ve experience with individual advocates process these inmates had learned by been lucky. There’s been no imposition but lots with interest groups. Actually I themselves and among themselves for of managed care, but clearly an offering. think you have to use a dual definition. addressing some of their health needs. In the early to mid-80s, there was only Obviously there are individuals in need This second attribute is one Marsha one HMO, HIP. Then at one time we had of advocacy, but decisions that affect seven plans to choose from. Now it’s Hurst has seized upon to propose an- them get made in the political arena.” down to three, but we are still lucky, and But SLC students are sometimes too other project that addresses the health some faculty don’t realize that. We’ve interested in the details, says Berg. “By needs of women in our nation’s prisons. always had a choice of different carri- the time they understand the details, If we know of various inmate groups ers, and sometimes even different plans those details have changed. The most that help each other on issues of health with each carrier. important thing is to have an overview while incarcerated, could not HAP, “Still,” Berg continues, “fee-for-ser- that can accommodate all the changes. through its resources, establish a net- vice is the option chosen by 75% of the The environment is constantly changing, work aiding such groups in sharing in- Fordham faculty.” Berg attributes this to while people stay the same. As much as formation on who they are, what they general resistance to change. “People are this field has changed in the last ten do, and what they need? We will keep very slow to change, even when pre- years, I think it will change twice as you posted as this project develops; sented with managed care choices that much, and twice as fast, in the next ten please contact us if you have any infor- are less expensive. There is a reluctance, years.” And Bruce Berg will help to keep mation about or potential contacts on an inertia.” HAP students on top of all those women’s health in prisons. In the classroom at Fordham, Berg changes. Reference: College Bound Programs: teaches health policy to undergraduates The reading list for Bruce Berg’s HA Preserving Higher Education in Prison, and graduate students, as well as a II section includes the following: Bedford Hills Correctional Facility, New course in federal, state and local elections Medicare Now and in the Future (Marilyn York State. and another in New York City politics. Moon) In his spare time, he is writing a book on The Managed Care Blues and How to Cure Them New York City, which he describes as (Walter Zelman and Robert Berenson) Eleanor Cerbone Scarcella, M.S., M.P.S., HA “an attempt to explain both the formal Medicaid and the Limits of State Health Reform ‘99, is currently a private consultant on health and informal structure of New York City (Michael Sparer) information services and instructor at the Col- government and how both have been Plagues, Products, and Politics : Emergent Pub- lege Bound program, Center for Redirection affected by economic development, race lic Health Hazards and National through Education, Inc. and ethnicity.” Berg says his focus is the Policymaking (Christopher H. Foreman, Jr.)

12 Director’s Desk— Opportunities for Advocacy zations of all sorts that provide outreach bureaus in the offices of the Attorneys by Marsha Hurst, Ph.D. to families who need assistance with General to handle complaints, enforce enrollment, decision-making and navi- legislated protections and investigate s most HAP graduates re- gating the system. managed care abuses. member, Diane Borst and I Two news articles call to mind the in- Ron Pollack, Executive Director of teach a course on “Health creasing opportunity for advocates in Families USA, argues that health care Care in Policy and Practice” rapidly growing areas that wed informa- ombudsman programs can help to “re- thatA includes an assignment called “Op- tion access to quality monitoring. In solve health problems quickly and portunities for Advocacy.” The assign- Ontario, Canada, the provincial hospi- effectively…create more informed con- ment requires a student to create a posi- tal association has put hospital “report sumers ... and restore public confi- tion for a health advocate and then make cards” on the Internet, available to the dence.” (http://www.familiesusa.org/ a case—including a cost-benefit analy- public. New York has just passed a bill omron.htm). Advocates should be in the sis—for hiring that person. We have al- to make publicly available doctors’ dis- forefront of establishing these programs ways enjoyed reading these papers, and ciplinary records. Publishers and advo- and making them work for consumers. particularly, of course, those that de- cacy services that provide physician in- The Norwood-Dingle Patient Protection scribed the need for a health advocate formation are increasingly moving to Bill [H.R.2723] that passed the House this in an entirely new setting. make this information easy to access fall, and provides strong measures of Frankly, reading the newspaper has online. A number of “report cards” on protection to all insured health consum- become like doing the “opportunities” managed care organizations (MCOs) are ers, failed to include the provision for assignment on a daily basis: there is so available to the public, including the independent consumer assistance ser- much need and so much opportunity for National Committee for Quality Assur- vices included in earlier Democratic ver- advocacy. The health care system today, ance (http://www.ncqa.org) accredita- sions. This bill—and a much weaker Sen- however, presents some striking contra- tion review results and, in California, a ate version—now has “poison pill” pro- dictions for the advocate. These contra- very useful evaluation web site, visions added to it that favor the healthy dictions are mainly in “direct” and pro- Healthscope (http://www.healthscope. and wealthy and that are likely to kill vider-based advocacy. But first let’s con- org), sponsored by the Pacific Business the legislation (including a threatened sider “indirect” or issue-based advocacy. Group on Health. As evaluative infor- Presidential veto). Nevertheless, con- In the news as I write this is Family mation becomes available, advocates are sumer protection legislation, whether it Health Plus, a New York State plan that increasingly important: is federal or state, cries out for advocates will make use of tobacco settlement • to provide reliable and responsible to ensure that these protections actually money and increased cigarette taxes to information; reach the consumer. provide health insurance to a million • to find ways to get that information Advocates are important in all aspects currently uninsured state residents. to the user public; of independent consumer protection, Family Health Plus was forged by an • to help interpret and evaluate the in- including guiding patients through the alliance of labor (Union 1199) and man- formation; multiple appeals processes required, agement (Greater New York Hospital • to apply the information to a patient even if there is a right to litigation if all Association) under the skilled political or family’s own situation. appeals fail. A recent medical article re- hand of union head Dennis Rivera. The Of course a “rights-based” approach ported that doctors don’t appeal MCO plan is not only important as another, to health care always requires advocates decisions because they think it isn’t albeit incremental, means of closing the to inform people of their rights and to worth the time and expense, even health care access gap in the state, but as help them secure the care to which they though analysis of potential gain indi- an example of the strange bedfellows are entitled. The patient representative cates that appeal would indeed be healthcare policy today can promote. position grew largely out of the hospi- worthwhile. Advocates working with Envisioning the formulation and imple- tal-based patient rights movement of the consumers today know that MCOs re- mentation of this one policy calls forth early 1970s. Similarly, the patient pro- spond to squeaky wheels. There are the need for health advocates working tection movement that is resulting in structural incentives that promote a cul- in multiple arenas: advocacy organiza- widespread—if uneven—state managed ture of denial (an assumption that cost- tions lobbying for universal access; care bills of rights as well as proposed saving and denial are necessarily inter- unions, a growing arena for advocates federal legislation, requires health advo- related) but this same culture often re- as medical professionals join the grow- cates to ensure that protection is indeed sponds to active advocacy by the patient ing ranks of hospital workers, nurses awarded. Unfortunately, states have or a representative: it makes good busi- and other health care workers organiz- been slow to make provisions for the ness sense. ing for a stronger voice in the health care advocacy services needed for consum- Grassroots non-profit advocacy orga- system; provider advocacy organiza- ers. Nevertheless, some, including Ver- nizations have begun to step in to fill the tions that are increasingly examining is- mont, Florida and Virginia, have estab- gap in consumer health advocacy. This sues of concern to patients that spill out lished ombudsman offices for managed fall I met an advocate who was part of a over hospital walls;· community organi- care complaints. Others have health care small group that founded an indepen- 13 Continued on page 14 Director’s Desk Continued from page 13 of the Family dent not-for-profit health advocacy or- Healthcare Deci- ganization in Texas and was contacted sions Act—a persis- by a similar group in Denver (the Patient tently unsuccessful Advocacy Coalition at http:// bill to allow families www.patientadvocacy.net). The Center to make end-of-life for Patient Advocacy (http:// decisions for a fam- www.patientadvocacy.org) in Virginia ily member who is has been extremely active not only ad- incapacitated and vocating for individuals, particularly has no advance di- those with cancer, but working for na- rective to express tional patient protection legislation, and her/his wishes. The we know there are many others around research internship the country. These organizations often encouraged Lois to combine direct advocacy—helping indi- move into the advo- viduals and families who are having cacy action arena, problems with the health care system or and she has spend this past fall at FRIA humanizing medical education. Other who need information and “navigation” (Friends and Relatives of the Institution- students are interning in programs that assistance—with policy advocacy, often alized Aged) rebuilding—and build- serve new immigrant populations. directed toward patient protection on ing—a coalition of advocates and orga- Other field placements this spring the state level. As advocates, we have nizations to lobby for passage of the point out the arenas of advocacy that been closely watching the politics of or- Family Healthcare Decisions Act. should be of increasing concern: an In- ganizational advocacy; some established As a further outgrowth of her research stitutional Review Board of a teaching organizations that have traditionally findings, Lois, together with December hospital that reviews research propos- voiced the interests of providers or main- graduate Pat Banta and myself, applied als involving human subjects; a mental stream researchers are being challenged for research funding to test the hypoth- health facility that does clinical work by independent advocacy organizations esis that one barrier to people executing with young children and is also produc- representing patients and families. Older advance directives is the concept and ing educational materials; a breast can- advocacy organizations, like the Ameri- language “literacy” required to under- cer outreach program that is specifically can Cancer Society, that provide support stand living wills, health care proxies looking to reach an underserved south- and information related to particular and other advance directives. The con- east Asian population; a hospital ethics diseases or conditions, are making ef- cept of “health literacy” has been grow- program; the quality improvement pro- forts to include a broader range of per- ing in importance as a way to under- gram of a large multi-service behavioral sonal advocacy services in their man- stand the difficulties people have mak- health provider. Students who have date. Some of our graduates are work- ing use of information about their health never done direct patient-centered ad- ing in these newer patient services areas and medical care. Lois and Pat were part vocacy work in hospitals still do one of of established advocacy organizations. of a group project in Mike Smith’s their placements in an inpatient setting, It is not unusual for students in Health “Evaluation and Assessment” class that and this semester these include emer- Advocacy to pursue interests that are in pretested the health literacy survey and gency room patient representation as the forefront of advocacy. Some of these assessment instrument. well as work with a woman’s oncology student projects and internships point to The importance of health literacy service. new and significant directions for health overlaps with another area of growing Health advocates are, in addition, par- advocacy opportunities. Two projects advocacy interest and student activity: ticularly aware of the impact on consum- spearheaded by students currently in the cultural and linguistic competency and ers of a new and powerful genetic para- Health Advocacy Program are focused sensitivity on the part of health profes- digm based on an explosion of new ge- on end-of-life issues, and illustrate an ex- sionals. A number of students are par- netic information. Some of our students citing dynamic between study and ac- ticularly interested in advocacy work are doing dual master’s degrees in tion in the program. Lois Steinberg, with diverse populations, and in gain- Health Advocacy and Human Genetics, working under Director of Patient Rep- ing the tools needed to communicate ef- and others are taking selected courses in resentatives Gretchen Harris at her St. fectively in a multi-cultural setting. A human genetics to be more effective ad- Luke’s/Roosevelt Hospital Center group of interested students attended vocates regarding genetic issues. There placement, became concerned about workshops this semester aimed at health is recognized need for oversight and pro- decision-making at the end of life. She professionals who work with people of tection regarding genetic testing, particu- researched the execution and implemen- different cultures and languages. Jody larly around informed consent, privacy tation of advance directives as part of her Harris and Cathey Bienkoski, first year issues and potential discrimination. Health Advocacy II course work, and students, are both interning with medi- It is a sad irony that in this era of ad- then did an internship with the New cal school (New York/Cornell and NYU vocacy, at the same time that there is a York Public Interest Research Group. respectively) curriculum development literal explosion of opportunity for pa- NYPIRG encourages interns to focus on programs focusing on understanding tient advocacy and health policy advo- research areas of their own interest, and and communicating with people of dif- cacy, the area that is struggling is the in- Lois honed in on the legislative history ferent cultures and on other aspects of patient based patient advocate in hospi-

14 Continued on page 15 Director’s Desk Continued from page 14 Spring Placements tals. Hospitals are in a continual state of cost-containment and budget-cutting. For many hospitals, patient representa- h, spring. That time of ern European and African refugees tive services are considered “non-essen- year when thoughts of who have settled in Queens. Linda tial,” and thus are frozen or even cut. As HAP students turn to ... Mahoney, who has a background in patient advocates we know that even if Aplacements! Many first- both nursing and law, is working at the hospital does not feel that having a year students are busy interning this the office of the General Counsel of professional advocate available to stand semester in hospital settings, gener- Continuum Health Care. Monica up for the patient in the hospital setting ally working as patient advocates. Malakar is doing her first placement is essential, the hospital should know Jennifer Johnson is interning under at Encore Plus, a national cancer that it is good business. Director of Patient Relations outreach and health advocacy pro- There are some moves afoot to advo- Gretchen Harris at St. Luke’s- gram for low-income minority cate for patient advocacy in the hospi- Roosevelt in New York City. Theresa women, run locally out of the tal. One is a discussion of certification, which many hospital-based patient ad- Foster joins Ellen Martin, Director of YWCA. vocates feel would be important as a the Patient and Family Relations De- Placements of advanced students public statement that patient advocacy partment at St. Vincent’s Hospital this semester are even more varied. involves certain professional competen- and Medical Center, also in the City. Barbara Belhumeur is interning in a cies that are a critical part of patient care. Anu Philip is working under the Di- new Breast Cancer Center at St. A second route would look at legislative rector of Patient Relations at Long Joseph’s Health Services of Rhode and regulatory avenues to ensuring that Island Jewish Medical Center in Island. Betti Weimersheimer is hospitals provide patients with advo- New Hyde Park. Linda Twomey is working under Diane Clarke, Direc- cacy services. Graduate Studies at Sarah doing her fieldwork with Gerri tor of Patient Relations and Volun- Lawrence College has begun to look at Travali in the Patient Relations De- teer Services at New York Presbyte- ways the graduate programs can pro- partment at Westchester Medical rian Hospital’s mental health facil- vide continuing education to profession- als in the field. Health Advocacy expects Center in Valhalla, New York. Bar- ity in Westchester County. Sharon to be in the forefront of this educational bara Winrich is working in the Pa- Chase is interning in quality im- direction at the College. We have already tient Representative Department at provement and evaluation research provided this kind of educational expe- Beth Israel Medical Center in the with F*E*G*S, the country’s largest rience to Patient Representatives at the City. nonprofit health and human services Veteran’s Administration, and are dis- Others are interning in hospital or organization, which has a major fo- cussing the continuation of this program. medical school settings, but in dif- cus on behavioral health. Ellen Peck Mike Smith will be giving a full-day ferent arenas of advocacy. Claire Falin is continuing work on the workshop on research methods, statis- Baney is working under the Institu- health needs of the rural elderly at tical analysis and using SPSS for health tional Review Board Coordinator at the Center for Economic Develop- professionals, particularly genetic coun- the Hackensack Medical Center-In- ment at the State University of New selors, this spring semester. And we are planning other educational programs for stitute for Biomedical Research in York at Oneonta. Lexi Mays-Engler people in the field. Watch our web pages New Jersey. Cathey Bienkoski is is doing her final placement with the for more information: http://www.slc. working on a project related to hu- Connecticut Nurses Association, edu/~health. manism and medical education un- with an emphasis on policy issues. As usual, I look forward to hearing der the Director of the Office of Melissa Haller is pioneering a new from you. Give me your ideas on any of Medical Education at the New York internship for health advocacy stu- the above—or any other area of health University Medical School. In an- dents with the editorial offices of the advocacy that interests you. And when other internship related to medical magazine Managed Care Interface. you call, say hello to Crystal Greene, our education, Jody Harris is at the Cen- And Lois Steinberg is completing new Health Advocacy secretary. She ter for Multicultural and Minority her fieldwork at FRIA (Friends and comes to us from Westchester Commu- Health at Weill Medical College of Relatives of Institutionalized Aged, nity College where she helped set up the career services database and counseled Cornell University. At St. Vincent’s Inc.) in lower Manhattan where she students on college transfers and careers. in NYC, Allison Sole is working un- has been building a coalition to work It’s been wonderful working with Crys- der Daniel Sulmasy, Chair of the De- toward passage of the Family Health tal this semester. If you are fortunate you partment of Ethics. Caroline Care Decisions Act in New York will get to meet her as well. Greenleaf is completing her intern- State. ship at St. Rita’s Center for Immi- Marsha Hurst, Ph.D. grant and Refugee Services, a com- Good luck to all our students in their Director, Health Advocacy Program munity center serving Asian, East- new placements! Sarah Lawrence College [email protected] 15 H E A L T H A D V O C A C Y B U L L E T I N

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