Projects
Below is a list of the RTC's active projects in the area of disability statistics. For more information, see the contact person(s) for each project.

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This activity will study access people with ID/DD and their families have to consumer directed community supports (CDCS). It will use a participatory action research model with people using CDCS to learn about their needs and challenges; how staffing needs are addressed and how this compares to staffing patterns in traditional services. Methods will also include: 1) a national survey of state DD Directors, 2) a survey of a sample County Directors of disability services in Minnesota, 3) review of extant data sets in Minnesota, 4) a series of 6-8 individual case studies to gather information about the experiences of CDCS participants; 5) a series of 3-6 focus groups to explore CDCS support and staffing issues that emerged in the case studies; and 6) surveys/interviews with 100-150 sample members to gather information from consumers or family members who direct the supports.

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For over 20 years, the National Residential Information Systems Project has been collecting and disseminating annually, national and state statistics on public and private residential services, Medicaid program utilization, expenditures, etc.

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Medicaid Home and Community-Based Services (HCBS) is the primary national program to support long-term care for persons with ID/DD. Amidst its rapid growth a recent General Accounting Office report noted reason for national concern about the quality of quality assurance (QA) in community services and what should be expected of system defining in community services. This project will gather and analyze survey, interview, document and focus group data about current systems of states and the federal regions for monitoring, expecting and promoting quality as part of a Participatory Action Research study by the Developmental Disabilities Quality Consortium (8 national ID/DD organizations) evaluate, and offer and advocate for policy and program guidelines for community quality assurance.

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This project will involve a secondary analysis of the integrated multi-state Community Living Outcomes database to examine the contribution of policy factors (e.g., state, funding source, costs); environmental variables (e.g., home size, staffing patterns, services received); and individual variables (e.g., functional skills, challenging behavior, secondary disabilities and support needs) on community participation, social integration, and independence and other outcomes.

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This project developed a draft of a Report to Congress on the supply and demand of direct support professionals needed to serve people with intellectual and developmental disabilities (ID/DD). The project included reviews of research, data estimates and projections, consultation and interaction with federal government staff, formulation of recommendations and development of an initial draft report. The RTC utilized its expertise in service systems for individuals with ID/DD, current workforce supply and demand and related factors, and data analysis expertise to develop this report in response to a Congressional request.

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This study will gather data in two surveys, in 2004 and 2006, on family support services in the 50 states and D.C. Data analyzed will include revenue, spending, and participant data for cash subsidy payments directly to families, and other family supports including respite care, in-home supports, counseling and other services. Data analysis and dissemination activities will address family support spending and numbers of families served in the past decade, family support spending in comparison to total ID/DD long-term care spending, and the level of Medicaid HCBS support for family support services in each state and the US.

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This project integrates Medicaid HCBS (“waiver”), ICF/MR, and Nursing Facility data collection and national data systems of the RTC/CL Minnesota and Colorado programs to maintain a national and state-by-state program of current information on status and trends in Medicaid and related programs that finance and support access to community services. (Activities in this area are co-sponsored by the Administration on Developmental Disabilities and by the Universities of Minnesota and Colorado.)

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This project undertakes various analyses of the National Health Interview Survey on Disability Supplement (NHIS-D) to further knowledge about the lives of persons with developmental disabilities on a range of topics.

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