People First 1115 Waiver

As many of you know, the NYS Office for People with Developmental Disabilities (OPWDD) has been in the news lately, and not in a good way. The Poughkeepsie Journal reported that Federal Medicaid has been funding residents of nine New York State developmental centers at $1,000,000 a year (yes, that’s a daily rate of over $5,000 per person per day), and an audit is ongoing. In addition, the New York Times series on abuse and neglect in residential facilities managed by OPWDD has caused outrage and fear, especially for families, and investigations have been reopened.

Add to that the tightening of Federal and State Medicaid funds, the increasing number of people entering the system and living longer, and the projected shortage of people to deliver direct care: It’s clear that this is a critical time for people with developmental disabilities and their families.

That’s the bad news. The good new is that OPWDD has begun the process of applying for a new Medicaid funding stream, an 1115 waiver they’re calling the People First Waiver, that they hope will both improve services to people with developmental disabilities and ensure long term fiscal integrity.

Some background: Most adults (and some children) receiving services from OPWDD are funded through the Home and Community-Based Waiver 1915(c). The waiver is essentially a contract that New York State makes with the Center for Medicaid Services (CMS). The waiver allows federal Medicaid money to be matched to state money to support people with developmental disabilities in community settings.
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The 1115 waiver will consist of a group of new initiative to begin as demonstration projects. As the models are studied and improved, they will be expanded to cover everyone who now receives waiver services. In a letter to stakeholders, Courtney Burke, the Commissioner of OPWDD, proposed that the waiver be based on the following principles:

• Financial support should be directed at individuals, not programs or institutions;
• Services should be provided as part of a comprehensive plan that assures an individual’s well-being and includes specific goals;
• All services provided to individuals, including those funded outside of the waiver, should be coordinated;
• Individual rights, including the right to live in the least-restrictive environment possible, and opportunities for choice must safeguarded; and
• The needs of families must be respected and supported

But, as we all know, the devil is in the details, and we need your help to make sure these principles are reflected in policy.

Want more information? Go to OPWDD’s People First Waiver site.

Information about the membership of the teams and their charters, as well as summaries of public meetings and team meetings are available on the website.

OPWDD has been talking about “transparency” for many years. Last time the 1915 (c) waiver was written, it was impossible to even find out what was being proposed and who was writing it. We now have unprecedented amount of information available, and the means to make our opinions heard.

In addition to participating in the public hearings, three members of the NYSDC have been invited to join the design teams contributing to the waiver (Joe, Maggie, and Susan).

We are working hard to have the voices of families heard. We welcome your input!

Susan, Maggie, and Joe