Developmental/Intellectual Disabilities

This report describes the State of Washington’s plan to allow families to create a trust fund for people with disabilities without effecting eligibility. This program matches 25% of private contributions and eliminates fees to encourage participation. This document describes the program implementation.

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.

This report briefly describes the New Jersey Statewide Respite Care Program. The New Jersey Department of Health and Senior Services (DHSS) administers a state-funded, Statewide Respite Care Program providing a wide variety of services to relieve unpaid, informal caregivers from the stress of caring for older people and/or people with disabilities. The respite program customizes services to the person and the caregiver, with a focus on alleviating caregiver stress.

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.

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).

Traces the development of the oftentimes confusing array of programs and services in the U.S. health and long-term care system, and describes how service providers can help families pull the pieces together. The monograph examines the challenges facing caregivers and offers a list of useful resources available to providers and caregivers. Part of a series of reports from Family Careigver Alliance. This publication is supported by a grant from the Archstone Foundation.

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.

Changes in characteristics, insurance status, and health care access were illustrated in this study that analyzed survey data on Social Security Disability Insurance (SSDI) beneficiaries during the six-year window surrounding SSDI entitlement. Findings suggest that there are significant gaps in the safety net for disabled workers before, during, and after the transition to SSDI.

The CHOICE website is devoted to Inclusion, Childcare, and Education. The site is intended as a gateway to services for young children in Nevada, but the site's resources will be useful to people across the country. The site hosts information, supports, services, video clips and polls. The Make A CHOICE Project promotes quality childcare and supports inclusion of all children in childcare and educational settings, especially those with disabilities and chronic healthcare conditions.

This site provides data, tips and tools to use with data for states and families to help guide improvements in community-based systems of care for CYSHCN. You will find a variety of resources on this site - including an easy to use, interactive data query feature that allows users to view and compare state, regional and nationwide findings from the National Survey of Children with Special Health Care Needs.