Consumer/Participant Direction

The Nursing Home Transition Summit, convened by Rutgers Center for State Health Policy, was held September 28 through September 30, 2005. It brought together 39 participants from ten states, in addition to representatives from CMS, to discuss how to sustain nursing home transition programs. The New Jersey Community Choice Counseling program served as the summit centerpiece, with presentations by program staff and visits to several sites in the Central New Jersey area.

The National Council on Disability is calling on administration to reform long-term services and supports systems to better serve people with disabilities and the elderly. In this new report, the NCD looks at current state activities, identifies the problems with our currently fragmented federal system and offers recommendations on future needs.

To what extent have several key state agencies and bureaus embedded concepts such as partnerships with families and citizens with disabilities, consumer decision making and self-determination into the training of their staff? This report is a follow up companion to a previous study and provides a good window onto 'grass roots' perspectives of consumers and families receiving services while informing agencies about how their particular efforts compare to those undertaken by others.

The Center for Personal Assistance Services has prepared this case study of the Washington state Medicaid Personal Care Services (PCS) program. This report first presents an overview of the states characteristics, and then reviews the Medicaid program and management of HCBS programs including the personal care in waivers. The primary focus is on the organization and management of the Medicaid PCS optional state plan program. The report highlights eight best practices.

As part of the Real Choice grant activities, Maine identified the need for a survey of consumers on the Consumer Directed Physically Disabled Waiver. This report provides the results of the in-home survey that was conducted by the Muskie School. The survey results identified some areas of focus and opportunities for increased training. Based on survey results, changes were made to the emergency back up plans, training with adaptive equipment and CNA registries.

The Virginia Real Choice Systems Change Grantees have developed a website designed to help individuals with disabilities and those who support them learn more about self-direction. The site is a place for self-advocates to find training modules, waivers workbooks, person-centered resources, and other materials related to consumer-directed services.

This is the fourth in a series of newsletters produced at the Exchange to provide assistance to our CMS Real Choice Systems Change grantees. This newsletter is produced biannually. Topics include: Building Nursing Home Transition into a Balanced Long-term Care System: The Washington Model, Individualized Back-up Planning and Independence Plus in Louisiana & New Hampshire, Participant-Centered Planning & Individual Budgeting, South Carolina's Care Call, and Money Follows the Person.

The report describes a program created by the Minnesota Legislature that provides long-term care choice counseling and services designed to help people live in community settings. Minnesota's Long Term Care Consultation (LTCC) services have made it possible for people of all ages to receive information about services, community residence, determination on whether they qualify for public services, and assistance in transitioning from an institution to a community setting.

This study describes the experiences of workers hired under consumer direction. The Cash and Counseling model does not appear to cause adverse consequences for the hired workers. Directly hired workers report high levels of job satisfaction and do not suffer physical or emotional hardship beyond what might be expected for individuals providing care to relatives. This report offers other information implications about consumers, their families and workers’ well-being.

This AARP Public Policy Institute fact sheet and report outlines the need for publicly funded respite services for family caregivers and describes the types available. The research concludes that publicly funded caregiver support programs play an important role in sustaining and strengthening the unpaid, informal care provided by families.