Enacts the "people first act of 2012"

Section two of the bill contains legislative findings.

Section three of the bill amends section 13.15 of the Mental Hygiene Law, in order to require the Commissioner of OPWDD to conduct a geographic analysis of the supports and services in community settings available for individuals with developmental disabilities and to identify gaps between required supports and services by region of the state. In addition, the Commissioner is directed to develop a web-based data-base which will permit the prioritization of the urgency of needs (P.D.N.S.) for supports and services for those facing emergency or immediate need, those facing critical need, defined as additional services and supports with one year and planning need, for those who will require additional services and supports within five years or where the individual's caregiver is over sixty years old. Annual reporting requirements will allow the Executive and the Legislature make informed policy choices in the delivery of supports and services to people with developmental disabilities.

Section four of the bill makes technical amendments.

Section five of the bill amends section 16.01 of the Mental Hygiene Law in order to permit the Commissioner, in consultation with stakeholders, to identify and implement a valid and reliable quality assurance instrument that includes assessment of consumer and family satisfaction, provision of service and personal outcomes. The tool must be nationally validated, benchmarked, consistent and reliable. It must include outcome-based measures to track health, safety, well-being, relationships, interactions with people who do not have a disability, employment, quality of life, integration, choice, service and consumer satisfaction.

Section six is the effective date of the bill.

Justification

The New York State Department of Health (DOH) in partnership with the Office of People With Developmental Disabilities (OPWDD) proposed a

new model for the financing of services for individuals with developmental disabilities to the federal government. The federal government no longer supports NY's current model for financing services and supports for people with developmental disabilities. The current model is based, in significant part, upon allowed costs for institutional placement, which are substantially in excess of actual costs of institutional placement, as institutional capacity has been reduced over the past 30 years. The state and the federal government had previously agreed that as institutional capacity was reduced, the funds otherwise used for institutional placement could follow the individual into the community. The use of these funds allowed NYS to create the current community-based service structure.

The state was authorized in the 2011-12 Enacted Budget to submit a Medicaid waiver application, which OMPDD has called the "People First Waiver", in order to transition the current Medicaid "fee for service" long-term care services for individuals with developmental disabilities to a care management model.

The state is seeking authority to transition individuals served by the current service delivery system into mandatory enrollment in managed long-term care services.

The core concept behind the "People First Waiver" application is an individual budget allocation built on a standardized assessment of individual support needs. Recognizing that people with developmental disabilities want to live their lives in the community, just like everyone else, OPWOD is racing to embrace the concept of a "self-directed" person-centered system, where individuals and their circle of support have considerable authority over what supports they receive, how they are received and from whom.

At the center of any system promoting self-direction is a personal budget allocation that the individual and his circle of support may apply within the bounds of an approved service plan to secure needed supports. The Center for Medicare and Medicaid Services (CMS) requires any "individual budget amount" to be "a prospectively determined amount of funds that the state makes available for the provision of (federally funded) services to an (individual)". Implicit in this definition are two key concepts: the state determines the budget amount for each individual, and the individual and/or his or her circle of support is provided this information before developing a service plan.

Essential to reforming the resource allocation system is choosing an assessment tool that will provide sufficient information to accurately and appropriately differentiate among service participants with respect to their support needs. The state is considering testing the InterRAI-DD assessment tool for this critical function. However, in order to be successful, information must be collected on the amount of money that is expended annually for each person's support.

The support needs of individuals must be systemically analyzed in relation to cost. At the same time, the state must have reliable and accurate information pertaining to the number of people who have requested services and need them presently and others who would likely seek services in the near future. Doing so requires diligent data collection over several years to examine how demand trends behave over time.

This bill encourages the type of data-gathering initiative that has proven successful in Pennsylvania and Illinois and will insure the accuracy of waitlist numbers. Combined with the expected implementation of the InterRAI-DD assessment tool, the state can begin to make meaningful projections regarding the budget allocations individuals will require if they were immediately enrolled in the system and began receiving the services their support needs justify. This information will provide the Executive and the Legislature with more reliable estimates of the costs associated with reducing wait lists over time, and enable OPWDD to more purposefully plan for building system capacity.

A second critically important component of the "People First Waiver" is to improve the quality of services delivered. Adopting an assessment-based resource allocation approach and building individual budget allocations are integral parts of a strong quality improvement process. This approach should improve access to services because an adequate and equitable budget allocation will be established for each person. A person-centered planning process builds based upon knowledge of the support needs of individuals and is made more effective because each person served will have his or her own budget allocation. The increased efficiency and equity in resource allocation conceptualized in the People First Waiver application should enhance provider capacity as service rates are appropriately established based upon actual cost to provide the necessary supports and services to a properly assessed individual. Health and safety requirements, instead of being mandated by state regulators operating in a "one size fits all" model can be appropriately established and fashioned in direct response to the nature of an individual's support needs.

The quality of services in this new "People First Waiver" can be improved by analyzing the impact of resource allocations on service outcomes. While state policy makers and providers are concerned about the health and well being of people with developmental disabilities, there is a critical need to assess systematically the relationships between individual budget allocations, the services delivered as a result of this allocation, and the achievement of desired outcomes. It is critically important in this new system redesign that we measure the outcomes as perceived by the people receiving the supports and services. Quality needs to be tied to individual outcomes, to their safety, to their ability to gain employment, to have friendships and to live with friends in settings they feel good about.

This bill provides for the type of person-centered, empirical data collection aimed at identifying in a comprehensive, consistent and reliable manner the quality of services using assessments of consumer and family satisfaction, their perspective on the provision of service and how the new service delivery model impacts on the personal outcomes of their lives.

Fiscal impact

To be determined.

Local fiscal impact

To be determined.

Effective date

Immediately.