Data collected by New York state agencies such as DOH , OMH , OPWDD , and the NYS Comptroller can offer insights into the I/DD population in myriad ways. This information is vital for understanding who is seeking access to services, what supports they seek, and how long they might wait to achieve their stated goals. Additionally, this information can provide a metric for tracking the efficacy of policies, particularly when it comes to residential placements.
True transparency accomplishes two goals. First, it maintains access to the information collected on a continual basis from providers, people, and other front-facing organizations and, second, it builds trust among all parties as long as the information distributed is accurately and fairly presented.
New York State offers many platforms for data access, but they do not fully illuminate the data of people with I/DD and in ways that are easily accessible.
It is the Position of The Arc New York that:
- OPWDD must, on a rolling basis, collect and share data on the full waitlist, which they maintain for emergency, substantial, current, and other residential supports
- Data must be accessible to people and stakeholders in a way that offers:
o Insight into the need
o Demographics of the current population being supported
o The ways people are being supported - Results and analysis of survey data that OPWDD collects from service providers must be shared with the providers in a timely fashion
- Costs associated with state operations must be accessible to people and stakeholders transparently and proactively
- OPWDD must partner with providers in the design of data definitions and collection methods wherever possible to maximize provider participation and the effectiveness of the survey process
