The NYSACRA Learning Institute on Innovation in Individualized Supports grew out of the work of the Individualized Supports Think Tank, a multi-stakeholder group that gave a clear definition to the idea of individualized supports, and the NYSACRA strategic plan that was developed in 2005. The Institute is offered by NYSACRA, and has been funded by the New York State Developmental Disabilities Planning Council (DDPC), the New York State Office for People with Developmental Disabilities (OPWDD) and NYSACRA. The Institute is strongly supported by the Self Advocacy Association of New York State (SANYS).
The Learning Institute defines individualized supports as those that are created around an individual's distinct vision for their life rather than created around a facility or a funding stream. These person-centered supports are based on the unique interests and needs of the person, afford the person as much control over their supports as they desire, and are adaptable as the person's life changes.
The first two Institutes took place from 2007 to 2010 with provider agencies working as a community of practice; committed participants learned from each other, created new small service designs, tested ideas through implementation, generated new collective wisdom for the larger provider community, and became leaders of change. The overall goal was for each participating agency to develop its capacity to generate innovative supports for individuals with developmental disabilities to allow them to live lives of distinction.
- 26 agencies from around NYS participated to varying degrees
- On Long Island, ten people have enhanced supports in their ISS apartments
- In Syracuse, 21 people set up "MyChoice" plans for individualized, productive days including a microbusiness
- In Westchester, an agency created a "Lives of Distinction" case manager position to do person centered planning with individuals who want community integration
- In Albany, 10 people are having individualized experiences in a unique "day hab" based on a large horse farm
- In Buffalo, five people set up micro-enterprises
- In Syracuse, 12 families of children with autism received enhanced, intensive supports to keep their children in the home
- In the Mid-Hudson region and downstate area, plans are underway for multiple projects including "downsizing" larger group homes, replacing a sheltered workshop with integrated employment opportunities, setting up micro-enterprises, and supporting a woman with challenging physical needs to live in her own apartment
- It requires transformational change in organizations and people; it is not enough to say "we do that" and then find money or solve technical problems
- It requires an interaction of ideas and experiences, especially experiences that allow the learner to see and talk with people with disabilities who are living lives of distinction
- It requires new approaches to relationships with people with disabilities that are not built on control and risk avoidance, but rather on new ways of listening to people
- It takes time and exploration and creativity and letting go of the old without necessarily knowing the answers to all the questions, just a deep commitment to answering them together, using community as resource.
- Providers face all kinds of reasons not to change the supports they provide (avoiding risk of harm, security in conformity to the norm, compliance with regulation, avoiding the organizational disruptions caused by change); the greater system needs to address its immunity to change by investing in ways to encourage change to happen
The experience of the first two Institutes suggests that it is more effective when aligned with OPWDD administrative structures and with self advocates and their families, and when there is deeper awareness of the transformational change necessary to provide individualized support (which requires deep commitment on both a personal and organizational level). A third Institute is in the planning stages with those elements in mind, and a realization that the financial reality of little-to-no new funding means looking at reinvesting existing resources in new ways.
