In my two previous articles on the Willowbrook deinstitutionalization I wrote of the history of the conditions that existed at the time and the beginnings of the exodus of individuals who were developmentally disabled from the center and into the community. In this article I will continue the history and write about the problems that emerged.
In order to comply with the mandates of the Willowbrook Consent Decree, which specified the number of Willowbrook Class members that must be deinstitutionalized each year, New York State had to call on the private voluntary health sector.
These private not-for-profit agencies had been providing vocational rehabilitation, day treatment, education, clinic, and other services to individuals who were developmentally disabled.
To convince the private agencies to participate, the State had to ensure them that they would receive 100% reimbursement for the programs and services that they provided. But, in the New York City Metropolitan area the average cost for a client in a community residential setting rose to approximately $20,000 annually. This figure was double the amount specified and allowed in the typical Community Residence Contract.
The State’s Office of Mental Retardation and Developmental Disabilities provided additional funding to the private sector via Purchase of Service and Chapter 620 Funds. Purchase of Service and Chapter 620 Contracts were ways to provide reimbursement to provider agencies. Private agencies began to depend on these funding sources for at least 50% of their Community Residence fiscal reimbursement.
The Office of Mental Retardation and Developmental Disabilities and the Division of Budget soon realized that these supplemental funding sources were inadequate.
Subsequently, in the 1979-80 New York State Fiscal Year, the Legislature and the Division of the Budget placed tight restrictions on the use of Purchase of Service and Chapter 620 Funds being used for the long-term funding of Community Residences.
These restrictions put the Office of Mental Retardation and Developmental Disabilities in the position of having to close Community Residences or spend far in excess of the allocated Purchase of Service and Chapter 620 Funds.
Faced with these fiscal problems, and with the fact that more and more residents of State Developmental Centers were targeted for deinstitutionalization, the State decided that its only feasible option was to convert from the Community Residence paradigm to the Intermediate Care Facility Developmentally Disabled (ICF-DD) paradigm.
This conversion to the Medicaid Funding mechanism provided several important advantages. The advantages to the State were single source funding, and a 50% Federal and 25% Local funding contribution. It also provided a vehicle by which additional staff and services could be obtained for the ICF.
When the State decided on the ICF model it necessitated the acceptance of the new Federal ICF Regulations which were promulgated subsequent to the Willowbrook Consent Decree. These Regulations were actually meant to be used to guide the operation of large ICFs rather than the small Community Residence type that the State of New York was using as a model. The Regulations spelled out in detail all the services, Programs and environmental and residential conditions that the residents must be supplied with.
The actual ICF conversion covered several stages. Because the existing residences had to meet the federally mandated standards, renovations had to be made whenever possible. Sometimes the residences consisted of apartments within a larger apartment complex so that alterations were impossible or impractical. These residences could not fit into the new ICF model and the residents were placed in other living arrangements.
The other changes necessary to the conversion were the hiring of additional staff members and subsequently the provision of many additional client services. Although the services were mandated, the final decision as to how many and what kinds of staff members were necessary was left to the State.
As there never had been an attempt to identify all of the duties and tasks necessary to ensure compliance with the Federal Regulations, staff allowed and rates set were based on what the State thought was necessary. Subsequently as more and more private agencies opened ICFs, they soon found themselves attempting to meet all standards with Medicaid rates which they felt were inadequate to ensure their compliance.