Comments of Judy Wessler, CCAHS Board Member, December 2014
Related to the Struggles of “Consumers” to Gain Maximum Feasible Participation in Health
Planning in New York City
Consumer participation in health planning in New York State dates to 1946 when the New York State legislature responded to the federal Hill-Burton Act. That Act made funding available for capital construction of health facilities. In many ways the state was ahead of its time in purporting to plan around health care needs and services. What is not generally known however, is the strongly political nature of the processes that developed.Health Perspectives, March-April 1976, detailed some of the problems and scandals that developed along the way. Funding for one of the early agency versions – the Health and Hospital Planning Council of Southern New York (HHPCSNY), was overwhelmingly populated with representatives of health care insurers and providers. In one example, related to “planning” for a new Gouverneur Hospital on the Lower East Side of Manhattan, the plan was changed based on consumer/community pressure but then those changes were again partially changed based on private institutional interests. Because of the political see-saw, the new hospital was built without inpatient surgery and obstetrics, weakening the hospital’s survival ability and leading to a closing of the inpatient services.
In several of the issues of the CCAHS Health Perspectives, the goals of health planning were outlined and detailed. The information provided was used as a guide for community organizations to understand what could be expected in the exercise of health planning. Some of the recommendations proposed by the Commission helped to focus on important directions. In reality, thirty to forty years later we are still talking about what needs to happen and this includes what we knew back then, but did not practice or the consumers were seriously sidetracked by providers. One example was the ignoring of the principle “..that the HSA’s much developed plans based on documented community needs, rather than on institutional priorities” didn’t happen. Another example was “That health planners set as a primary priority the creation of mechanisms to identify and eliminate preventable disease and injury and to identify and eliminate the environmental causes of disease.” (Health Perspectives, Consumer Commission on the Accreditation of Health Services, Inc., March – April 1976. V. 3, # 2. For anyone now involved in seeing that the law and regulations are actually followed in the latest federal Medicaid waiver requests by some providers under the Delivery System Reform Incentive Payment (DSRIP) Program, these recommendations will sound familiar because they are within the goals being worked on right now. It was visionary of CCAHS and important to know that there were such efforts in the past by consumers/communities. Exposure of CCAHS publications might revitalize the consumer movement!
New York City has a three-part history of implementing some level of community-based health planning. The first part was the Mayor’s Organizational Task Force (MOTF) on Health Planning, a planning body to plan a planning body, established in the 1970s. Also as often happens in this city/state, there is a need to delay decision-making about structure while trying to figure out a way to not step on too many toes. The MOTF was developed to design how health planning could be accomplished in New York City. A major benefit emanating from MOTF was a demonstration developed to test local health planning. Ten community-based (consumer and provider) local health planning bodies were funded to demonstrate what could be accomplished by involving communities. The ten organizations formed a coalition to put more clout behind their recommendations for continuing health planning. Two of these community-based planning groups were led by members of the CCAHS board – Pete Velez and Marshall England. The MOTF was funded by the City through the Capital Budget. The coalition legally challenged the City’s use of capital funding for operations, an issue which was important in health planning.
The second part was developed from the MOTF planning effort, as federal law allowed for and funded, a Community Health Planning Agency (CHPA). There was again a political pull and difference between the public sector and the private sector. A private organization, the Health and Hospitals Council of Southern New York (HHCSNY), competed to become the CHPA. Compromises made this a hybrid organization, with a large board that was to be chaired by the City Commissioner of Health, at the time Dr. Lowell Bellin. In operation, Dr. Bellin used the CPHA to accomplish some of his major goals, including closing public hospitals.
The important piece was although the new organization eliminated the local health planning groups under MOTF, there was a requirement that there be 33 local district boards, combining City planning board districts, comprised of providers and consumers/community, developed to advise the CHPA on issues. Each of the local district boards was given a seat on the CHPA board, and each of the borough organizations had a seat on the 25-seat agency Executive Committee. There was much of value that happened at the community level just because consumers and providers were sitting at the same table. This of course was not true in all of the local districts, but certainly produced much good, when consumers and providers worked together. In several instances, hospitals agreed to develop community advisory boards (CAB). When the recommendation was made which required CABs, hospitals used the CABs to support a Certificate of Need (CON) application to the State or a request to approve new service or capital expense.
The third part was the development of the Health Systems Agency (HSA) which arose out of the 1974 federal legislation, the National Health Planning and Resources Development Act (NHPRDA). The public/private competition continued into this phase, with one added twist: the City submitted an application which continued the control of the health planning process under the City Health Commissioner. The private sector developed its proposal referred to as “the Dorset Group” after the name of the hotel where the group met. This time though, there was a third application which came from the community through a citywide coalition of which several of the key leaders were members of the CCAHS board. There were many differences in the three proposals, but a major issue of concern to the community applicants was to continue and maintain the 33 district boards, which became known as sub-areas councils. The federal agency in charge, then called the Health Care Financing Administration (HFCA) and now called the Center for Medicare and Medicaid Services (CMS), required public involvement in the determination of which entity to support. The district boards split their support, with some going with the Comprehensive Health Planning Agency (CPHA) application and others supporting the community application. HCFA forced negotiations reported in the New York Times (New York Times, The City Has a Deadline for a New Health Systems Agency but it must define it first, January 14, 1978) among the three parties in which each came away with something. The decision included: making HSA a non-profit organization instead of a City agency; maintaining a large board with a wide array of representation; and continuation of the 33 district boards with some assurances of active participation at the local level.
The HSA staff and some of its board were not supportive of consumer/community involvement unless it was controlled by provider entities. There was little in the way of resources dedicated to the district boards and in particular the community members. Education was limited and support in thinking through community strategies was almost non-existent. Consumers who supported the agenda of the staff of the HSA were rewarded with special attention, appointments, and at times perks. A coalition of consumers from various district boards came together to detail the problems with the HSA because of its lack of support of community priorities. After attempts to talk with and negotiate with the leadership of the HSA staff and board failed to resolve the major issues, the consumer coalition wrote to the federal planning agency and requested its intervention. The head of the federal regional office took these concerns seriously, adding a condition of funding to approval of the City HSA required a consumer liaison staff person and committee within the agency.
An important positive aspect of the health planning agency was the requirement of a public planning process. Unlike the private planning sector, meetings took place in the public. Documents were publicly available. Therefore, a broader populace had the ability to prepare properly before attending meetings and hearings, read and understand important documents related to the health planning. Institutions wanting to build and expand their facilities and services now were required to go through a public process which was more transparent than the private routes available in the past.
Consumer Conferences Summaries