Interestingly enough, the development of “volunteer agencies” stems from the rapid decentralization of state institutionalized developmental centers due to deplorable and inhumane conditions which then existed, most notably exemplified by the Willowbrook Report. Parents of Willowbrook residents filed a class action suit in U.S. District Court for the Eastern District of New York on March 17, 1972. The lawsuit alleged that conditions at Willowbrook violated the constitutional rights of their children. The result of the decree was to “ready each resident…for life in the community at large” and called for the placement of Willowbrook residents in the “least restrictive and most normal living conditions possible.” The shameful legacy of Willowbrook guided a generation of policymakers and advocates to the profound recognition that to truly be free from harm, individuals with disabilities must be provided with services in the least restrictive environment that meets their needs, in places that most look, feel and operate, well, like home.

Over six hundred private non-profit agencies sprung up from the efforts of advocates and policy makers to reshape the milieu of service delivery for people with developmental disabilities and are currently responsible for 80% of the approx. 120,000 Waiver enrolled individuals receiving services in New York State.

The Office for People with Developmental Disabilities (OPWDD), was created in 1978 as the Office of Mental Retardation and Developmental Disabilities is the regulatory and coordinating agency which oversees and certifies the operational licenses non-profits need to operate. At one time OPWDD set rate reimbursement, or the amount of pass-through payments assigned to each agency to underwrite the costs associated with doing business. This task was recently reassigned to the New York State Department of Health (DOH). Fee for Service methodologies for deriving reimbursement amounts (which in the past have change frequently), has eluded my financial pragmatism.

On paper, the metrics are straight forward enough to understand, but in further analysis, there are variables which may include acuity multipliers, seemingly proprietary in nature and remain partially undisclosed. Moreover, they have revealed equations which demonstrates methodology, but will not reveal the actual raw data sets they used for their regression analysis, nor will they tell a provider when they pulled DDP2 data (acuity assessment) for their program and what those numbers represent. Result; below cost reimbursement models for some agencies, or exorbitant profits for others. Very arbitrary, and one is left scratching his or her head as to why. For the negatively impacted agencies, the problem is exacerbated by excessive delays in publishing final rates; and if rates are lowered for whatever reason (rate setting delays of 6 months or more are not uncommon), the agency is required to pay back the delta with no recourse available, beyond litigation of course. Talk about a budgeting nightmare; and In Flight has been adversely affected by the so-called rate setting process.

Again, appeal back to the Community, and why it is so important…. Coming, Part 3

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