Reports

This report describes the implementation of Personal Preference by synthesizing information from in-person discussions with program staff, a mail survey of program consultants, telephone interviews with consumers in the treatment group, and program records. It discusses the program’s goals and features, the ways consumers managed their program responsibilities and took advantage of increased flexibility, and the degree to which consumers were satisfied with the programs.

To improve long-term care quality, state and federal policymakers are experimenting with positive incentives to reward providers who can demonstrate better quality. Incentive payment systems are part of a broader trend in the health care field, referred to as “pay-for-performance” and may consist of either financial payments or non-financial recognition. This paper describes the challenges involved in designing effective quality incentive payment systems in the long-term care sector.

This article draws on the best practices of consumer-driven health programs for people with disabilities, and offers a Disability-Competent Health System model. The model integrates health and social services to maximize opportunities for independent living and person-centered care. This interdisciplinary approach is a promising framework and an opportunity for the independent living movement to address health-related issues without subscribing to the medical model.

In 2004, Congress requested that HHS conduct a study on the shortage of direct support professionals (DSPs) supporting persons with intellectual disabilities and other developmental disabilities (ID/DD). The study includes an examination of the causes associated with high vacancy and turnover rates, and an examination of the impact this shortage may be having on services for people with ID/DD. The report offers figures on projected needs and future demands of worker recruitment and retention.

This groundbreaking two-part report calls for significant improvement in health care and long-term care that relies too much on families without recognizing and assessing family caregivers' own support and health needs. Volume II provides four background papers and two personal accounts. Chronic illness and disability, as these accounts reveal, affects not only the lives of the individual, but also of family members who provide the care and support.

This two-part report calls for significant improvement in health care and long-term care that relies too much on families without recognizing and assessing family caregivers' own support and health needs. Volume I reflects the professional consensus achieved among experts and stakeholders on fundamental principles and practice guidelines that apply to a range of practitioners in a variety of settings. The strategies focus on stimulating caregiver assessment as a basic component of practice.

This paper discusses the activities of 11 grantees and the program and policy issues they have encountered. The paper’s primary purpose is to provide information that states and stakeholders will find useful when planning or implementing consumer-directed initiatives, whether through solely state-funded programs or the Medicaid program. In particular, the report highlights program and state and federal policy challenges and how Grantees are addressing them.

One of the greatest challenges facing every state Medicaid program is devising an appropriate and effective delivery system for its most resource-intensive beneficiaries. Several pilot programs called Disability Care Coordination Organizations are taking the best attributes of managed care and reconfiguring them to improve the lives of Medicaid beneficiaries with disabilities. This paper synthesizes the programs’ key components and describes the challenges they face.

Support brokerage is a potentially important development that can assist in enabling people to make informed decisions and promoting independence. This discussion paper from England raises a number of pertinent debate questions about the practicalities and potential difficulties of support brokerage. As we here in the US implement system transformation that includes self-determination, we can learn from the examples illustrated in these UK brokerage pilots.

United Cerebral Palsy conducted a holistic analysis to chart each state’s ranking and progress in creating a quality, meaningful and community-inclusive life for those Americans with mental retardation and developmental disabilities served by that state’s Medicaid program. This is part of a three-phase process that also will study top-performing states and then create state-specific action plans on how their state can improve.