The Office for People with Developmental Disabilities (OPWDD) is proposing applying for an 1115 waiver with the Centers for Medicare and Medicaid Services (CMS). All of the people who currently receive services through the 1915(c) OPWDD waiver will be shifted to the 1115 waiver. Disability rights advocates are currently testifying across the state in response to OPWDD’s Concept Paper on the proposed 1115 waiver.

On Thursday, June 2, several Rochester-area advocates testified at the Rochester hearing and made the most of their allotted two minutes.

One of the issues that was raised, which is also the most concerning, is that CMS has recently issued specific guidelines on how to define “community-based” services for 1915(c) home and community-based (HCBS) waivers. This is of particular importance to the developmental disability community as the OPWDD system has historically bastardized the term “community” to mean anything residential that is not a very large state school (e.g. Willowbrook). The result has often been the appearance of deinstitutionalization when in reality all too often some congregate facilities have simply been re-classified as “community”, and some individuals have simply been shuffled from large institutions to small, segregated congregate homes which are no more than mini-institutions.

The regulations proposed by CMS would disallow the provision of 1915(c) waiver services in facilities that have “institutional qualities,” defined as “regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual’s ability to engage freely in the community.” In addition, community-based settings must not be housing that is “designed expressly around an individual’s diagnosis or disability,” and must enable “individuals with disabilities to interact with individuals without disabilities to the fullest extent possible.” This is an unprecedented leap forward and clearly articulates CMS’ intent to ensure that people with disabilities must receive services in the most integrated setting appropriate to their needs.

Our concern is that OPWDD may be planning to shirk their obligations to comply with this definition by shifting to an 1115 waiver, which is not yet subject to the same classifications. OPWDD’s array of group homes, adult homes, and Individualized Residential Alternatives (IRAs), which currently house thousands of individuals receiving 1915(c) waiver services, will in most cases no longer be in compliance with the newly proposed definitions.

We urge the state to apply CMS’ newly proposed definition for “community-based” to all services in an 1115 waiver, if in fact the state pursues the 1115 waiver.

A sample of the other issues raised in a report from the New York Association on Independent Living (NYAIL) are:

• OPWDD must act in concert with all other State disability service agencies, under the clear direction of Governor Cuomo, to implement a consistent disability services policy. All State operated and funded services should be guided by a “community first” policy, which supports independence and individual choice of services in home and community based settings.
• OPWDD must adopt a phased plan to move people out of congregate segregated settings—not just the large institutions, but all of the Individualized Residential Alternatives (IRAs) that have institutional qualities.
• OPWDD should continue its policy of eliminating sheltered workshops, which will save the State money and increase community integration.
• OPWDD should cease supporting residential schools, in or out of the state.
• All people with developmental disabilities should have the ability to creatively design and control their service plans and budgets to meet their individual goals.

A copy of the full NYAIL report, which CDR collaborated on, can be found here.