Consumer/Participant Direction

The Utah Family Council is a non-profit organization that provides support to all families of people with disabilities, regardless of whether they receive public funding. This document describes this program, which uses funding from the Self-Determination Grant from the Robert Wood Johnson Foundation to increase availability. The report describes the program and its implementation.

In most cases, systems in use are paper-based and time intensive, which can lead to a high risk of fraud and abuse. The AuthentiCare Solution is an automated point-of-service verification system developed by GovConnect. The solution is designed to provide accurate, real-time access to information and to document that services have been provided. The solution uses a simple, secure, integrated phone and Internet environment.

This report documents the State of Massachusetts’ community governing boards. These boards were established to manage service delivery as a part of a self-determination initiative for people with developmental disabilities. The governing boards – elected by people with disabilities and their families – reflect Boston’s ethnic neighborhoods and serve people with similar ethnic and cultural backgrounds.

Millions of Americans with disabilities or long-term illnesses need assistance with daily activities. Family members and friends fill much of that need, but paid workers are a critical source of care and services. The need for assistance is increasing yet the number of people available is growing slowly. CMS funded this paper to summarize literature and research on the home care, home health, and personal assistance services workforce, highlighting issues raised and lessons learned.

The Formative Evaluation of the Real Choice Systems Change Grants evaluates how the Systems Change grantees are progressing towards meeting their goals. The Formative Evaluation identifies problems faced by the grantees and ways that they deal with the problems. This document provides summary information about each of the FY2003 Grantees.

This report provides a summary of the partnership development activities undertaken by the 52 Grantees that were awarded a Systems Change Grant in 2001. It describes the ways that Grantees involved consumers and public and private partners in the development of Grant applications and their plans for involving them in implementation activities. In addition, the report includes a more in-depth description of partnership involvement for nine Grantees (three from each Grant type).

This presentation will address a recent pilot study of the implementation of Rider 37 in Texas, the six pioneers and their support network that facilitated in the transition process from a nursing facility to the community, and the stakeholders in Texas who participated in the interviews.

In fiscal year (FY) 2004, Congress appropriated approximately $40 million in funding for a new round of Real Choice Systems Change Grants. With this solicitation, the Centers for Medicare & Medicaid Services (CMS) invites proposals for grants totaling approximately $31 million of these funds.

This presentation highlighted The Community Living Exchange Collaborative Web site and the various features available to a wide array of audiences, including states, policy makers, advocates, researchers, consumers, and other entities involved in building systems that provide services and supports that reflect the needs and preferences of individuals of all ages with disabilities.

How would a system of supports look if people with disabilities and their circle of friends, or network, were truly in charge of their own needs, if they truly achieved self-determination? This paper is a call to action and an illustration of the depth of change required if we are truly to become responsive to people with disabilities.