National Resource Center for Supported Decision-Making
Quality Trust for Individuals with Disabilities in collaboration with an array of national and local partners has developed this proposal for the development of an integrated technical assistance and resource center on Supported Decision-Making. The National Resource Center for Supported Decision-Making (NRC-SDM) will address the needs of all people in need of assistance with decision-making and specifically coordinate collaboration between the aging and disability networks around this important topic. The NRC-SDM will also be integrated across disciplines to ensure that centers work addresses the policy, legal, research, clinical and practical aspects needed to make Supported Decision-making operational in day to day practice. Finally, being an advocacy organization firmly grounded in the principles of person focused work, Quality Trust will ensure that all NRC-SDM activities are guided by the direct participation of people who are aging or living with disabilities and the friends, family and supporters who make up their primary support network. The NRC-SDM will work on multiple levels to stimulate the significant shift in thinking about policies, systems and practices required to implement the concepts of Supported Decision-Making. The NRC-SDM will have an overall advisory group representing the diverse group of aging and disability stakeholders involved in this issue. We have also identified leaders to facilitate specific work groups around critical issues such as law and policy, friends, families and supporters, research and evidence based practice and self-advocacy and decision making supports. NRC-SDM will build on the work already underway through Quality Trusts Jenny Hatch Justice Project to use technology to promote the sharing and dissemination of information of successful supported decision-making practices. With our partners at The Kansas University Center for Excellence in Developmental Disabilities (KU UCEDD) and the Burton Blatt Institute (BBI), we have developed a plan for innovative research on supported decision-making and how it can support significant improvements in inclusion, self-determination and quality of life. We have already established relationships with local partners in both aging and disability around reforms to policy, practice and law needed to implement SDM. This will be the basis of a local demonstration project in DC. We will use the networks of our national grassroots partners to identify information gaps and collect information about real people, their challenges and success stories We will use our work groups and experts in our partnership network to collect resources already developed and develop training materials as needed to provide technical assistance on SDM and related issues, including youth transition, person centered decision strategies, We will design and implement a small grants demonstration project to illustrate how to implement change on a local level. All information will be made available to the general public through the NRC-SDM online clearinghouse and resource hub. This hub will allow us to document and share SDM practices working in real life from self-advocates, family members and other primary supporters. We will also reach out to courts, and legal representatives and judges and other entities with experience working with people in both the aging and disabled populations through our partnership with the ABA and National Legal Resource Center (NLRC). Data collected on outcomes will be used to create a white paper outlining existing resources, gaps in knowledge and practice and recommendations for next steps. The NRC-SDM will coordinate and respond to requests for training and technical assistance by tapping subject matter experts in our network of partners. Collaboration with existing entities such as the NLRC, LTC Ombudsmen Resource Center, Title IIIB legal providers, Aging and Disability Resource Centers (ADRCs) and P&As will enable us to promote training and collaboration at the state and local level in the area of SDM principles and approaches. Our ultimate goal is to produce a general consensus on a process for broad implementation of SDM. Materials and products produced by the (NRC-SDM) will include standards and expectations for those who are asked to serve in the support role to facilitate decision-making as well as reporting and documentation systems to ensure that systems stay true to the desired outcomes of self-determination and personal empowerment.