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Federal Initiatives
  >>Located in Store(s): Systems Change Shop

This department will include products related to national initiatives aimed at making significant changes to service systems based on person-centered principles. These products may include articles or reports about innovations in state or local government planning, regulations, statutes, or other activities that support person-centered practices. Some examples of these initiatives might include efforts to decrease waiting lists, mandates to develop individually tailored services, or programs that support and/or develop self-advocacy.

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Managed by: Dan Berland (dberland@nasddds.org) of National Association of State Directors of Developmental Disabilities Services (NASDDDS)

Product Categories
Books, Publications & Reports (printed and/or online) (40 Products)
Electronic Media (24 Products)
Organizations, Programs, and Projects (24 Products)
Other (3 Products)

Books, Publications & Reports (printed and/or online)
‘My Thinker’s Not Working’ A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports
This report is about dementia and people with intellectual disabilities. It provides a national action plan. You can download it as a PDF file.
2011 Disability Status Report
This report has statistics about people with disabilities around the United States.
A Comparison of Medicaid Institutional versus Community Expenditures
This online article examines how states spend their Medicaid money. It shows that in most states people with intellectual disabilities are more likely to live in the community than are people with physical disabilities.
Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities: Final Report
This report to the U.S. Secretary of Labor has recommendations to improve the competitive employment rates of individuals with disabilities in the U.S. It focuses mostly on those with intellectual/developmental disabilities.
Americans With Disabilities: 2010 Report
A report from the US Census Bureau with demographic information on people with disabilities in the United States.
Direct Service Workforce Activities of the Systems Change Grantees
This is a report from the Centers for Medicare and Medicaid Services (CMS) on the 20 grantees that had initiatives in 2004 to improve the recruitment and retention of direct services workers.
Empowerment for Americans with Disabilities: Breaking Down Barriers to Careers and Full Employment
This report tells how important it is for people with disabilities to be employed and fully included in society. It was written to the President of the United States.
Envisioning the Future: Allies in Self-Advocacy
This report has ideas to help self-advocacy grow all around the United States. You can read it online.
Federal Perspectives
A newsletter that provides a monthly summary of national issues shaping publicly-funded disability services.
Home and Community-Based Services: Creating Systems for Success at Home, at Work and in the Community
This report explains the challenges that states and providers were having in serving people in community-based settings.
Improving Care For Populations Disproportionally Affected by Alzheimer’s Disease and Related Dementias: Report From the Task Force on Specific Populations
This report is a plan of action to address the needs of people who are most likely to be affected by Alzheimer's disease. One of the groups targeted is people who have Down syndrome.
Improving Health and Access to Health Care for People with Disabilities
This paper advocates for access to all types of healthcare programs for people with disabilities.
Initial Impacts of the Ticket to Work Program for Young New Social Security Disability Awardees: Estimates Based on Randomly Assigned Mail Months
This report looks at how well the Ticket to Work program is working to help people with disabilities find jobs. It also looks at how well this program is saving money.
Issue Brief: New Opportunities for Individuals with Disabilities to Expect Better Quality Services and Outcomes
This report reviews how states are using their Home and Community-Based Services funding. It warns that many of the people with disabilities being supported are still isolated from their communities.
Just Like Home: An Advocate’s Guide to Consumer Rights in Medicaid HCBS
This guide explains the standards and guidelines that settings must meet for home and community-based services (HCBS) reimbursement.
MACPAC Report to the Congress on Medicaid and CHIP
A report to the United States congress that reviewed the Medicaid and Children’s Health Insurance Programs. The full text is available online.
Medicaid Home and Community-Based Services: The First 20 Years (Policy Research Brief)
This Brief reports on the Medicaid Home and Community-Based Services waiver program during its first 20 years, from 1982 through 2002. It is available online in full text.
Medicaid Innovations— Meeting Summary Report
This report summarizes a 2012 meeting in which state Medcaid directors asked for help from the Feds in managing their costs.
Medicaid Managed Care for People with Disabilities: Policy and Implementation Considerations for State and Federal Policymakers
This report makes twenty-two recommendations to the President about Medicaid Managed Care for people with disabilities.
Model Communities: An informal discussion among states
This is a report of a two-day long conversation between people from six different states about how to build better and stronger communities in which people with disabilities are fully included.
Money Follows the Person 2011 Annual Evaluation Report
A report on the progress and effects of the money follows the person program. This federal program gives people who need long-term services and supports more choices about where they live and receive care.
Money Follows the Person Demonstration Program: A Profile of Participants
A report about the participants in a government program that helps people on Medicaid move from institutions to live in the community. You can download it as a PDF file.
National Goals for People with Intellectual and Developmental Disabilities
This book comes out of a federal conference that was held in 2003. It describes the current knowledge and national goals in areas that affect the lives of people with developmental disabilities in the United States.
ODEP Accomplishments: Real People, Real Impact
This report highlights the many accomplishments of the Office of Disability Employment Policy from 2009 to 2012. Its job is helping people with disabilities succeed in the workplace.
Olmstead Progress Report: Disability Advocates Assess Olmstead Implementation After Two Years
This report explains how states were using federal funds to implement the Olmstead decision three years after it was passed.
Public Policy Agenda for the 113th Congress 2013-2014
This document highlights the areas needing attention by our 113th Congress to help people with intellectual and developmental disabilities.
Research on People with MR/DD based on the National Health Interview Survey - Disability Supplements
This is a series of reports that provide wide ranging information about people with intellectual or developmental disabilities that is based on analyzing special census data.
Self-Employment for People with Disabilities
This report summarizes the activities of three states in helping people with disabilities to start their own businesses.
State and CMS Oversight of the Medicaid Managed Care Credentialing Process
This report looked at how well states are following the Federal laws about providing quality health care to those who use Medicaid.
State Trends and Innovations in Medicaid Long-Term Services and Supports
A short report about how states are using Medicaid funding innovations to allow people to move from institutions to community based settings.
Statewide Transition Plan Toolkit for Alignment with the Home and Community-Based Services (HCBS) Final Regulation’s Setting Requirements
This information brief helps states comply with regulation changes made in January, 2014. These new regulations said that HCBS services needed to be truly community-based.
Tax Incentives Supporting the Americans with Disabilities Act of 1990
The report gives an overview of the tax benefits available to businesses to become more inclusive according to ADA.
The 2014 Federal Home and Community-Based Services Regulation: What You Need to Know
This document explains the many changes made to the Federal HCBS rules in 2014. They were targeted to help make sure people with waivers were truly living in the community.
The Affordable Care Act and the I/DD Community: An Overview of the Law and Advocacy Priorities Going Forward
A brief document that provides an overview of what Obamacare means for people with disabilities.
The Case for Inclusion
This annual report looks at how well Medicaid spending is doing with creating more inclusive communities. Results are given for each state.
The National Evaluation of the Money Follows the Person (MFP) Demonstration Grant Program
This report reviews the strategies used by a sample of six states since introduction of Money Follow People demonstration in 2007.
The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities
This report asked all Americans to help people with disabilities enjoy an improved quality of life as a result of having better health care and understanding.
The UN Convention on the Rights of Persons with Disabilities: U.S. Nears Ratification
This article updates progress on enforcing the CRPD in the United States.
Toward the Full Inclusion of People with Disabilities: Examining the Accessibility of Overseas Facilities and Programs Funded by the United States
This report looks at United States programs that help people in other countries. It provides ways for these programs to be more inclusive of people with disabilities.
Unfinished Business: Making Employment of People with Disabilities a National Priority
This report from the U.S. Senate is on employment and people with disabilities.
Electronic Media (Videos, CDs, T.V., Radio, Websites, etc.)
A History of the Developmental Disabilities Assistance and Bill of Rights Act
This web page explains the history of the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). It shows the records of many important meetings and hearings, and the manuals, reports and reviews from different times in history.
Balancing Incentive Program: Strengthening Medicaid Community-Based Long-Term Services and Supports
A brief report about a federal program that offers states funding to move away from institutionally-based care and toward home-and community-based services.
Bridging the Aging and Developmental Disabilities Service Networks: Challenges and Best Practices
This report discusses how systems can work together to support older adults who have developmental disabilities.
Centers for Medicare & Medicaid Services’ (CMS) on-line resource for Managed Long Term Services and Supports (MLTSS)
An online tool that provides basic information about Medicaid Managed Long Term Services and Supports (MLTSS).
Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation
A report on the healthcare status of Americans with intellectual disabilities and a national plan to improve access to healthcare for this group of people. Full text is available online in HTML format.
Delivering on the promise - Report of federal agencies' actions to eliminate barriers and promote community integration
This web page explains the plans of several US Federal agencies to implement President George W. Bush's New Freedom Initiative.
Disability and Health Data System
An online system that provides a lot of disability statistics in the United States.
Disability Statistics
This website has a lot of information about people with disabilities living in the United States.
A website designed to help managers within the U.S. federal government find and hire qualified people with disabilities.
GAO Report: States' Plans to Pursue New and Revised Options for Home- and Community-Based Services
A report from the Government Accountability Office about the four Home and Community-based Service options for Medicaid beneficiaries.
Global Disability Rights Library
A website that has resources for disability advocates relating to the United Nation's Convention on the Rights of Persons with Disabilities.
HCBS Advocacy
This website offers tools and resources regarding the new regulations for home and community-based services (as of March 2014). The information is helpful for advocates.
This CMS-funded website provides technical assistance to states in developing, evaluating and maintaining HCBS waiver programs.
Long Term Services and Supports in Indian Country
This website provides step-by-step information to create long term services and supports in tribal communities.
Model Communities: The national discussion continues
This online report summarizes a meeting held in 2004. At it, states talked about ways to include people with disabilities in making the system work better.
National Center for the Dissemination of Disability Research (NCDDR)
Highlights of the research and research outcomes of grantees funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR).
National Rehabilitation Information Center
This website has information about all of the many research and demonstration projects funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) over the past 10 years in an accessible format.
ODEP Disability Data Resources
This webpage has links to several sources of data concerning the status of people with disabilities in the United States.
Recommendations for CMS Managed Care
In this document, the National Council on Disability expresses concern over the federal government's plans to use managed care.
Technical Assistance Exchange Issue Briefs
These short documents guide states in planning and implementing programs for older adults with and without disabilities.
The Arc Capitol Insider
This blog has regular updates on federal legislative activities affecting people with intellectual disabilities and related disabilities.
A website that includes full copies of United States Laws and proceedings of Congress from throughout history.
Workforce Innovation and Opportunity Act Webinar
This 90 minute webinar describes the Workforce Innovation and Opportunity Act. It also contains information on state deadlines regarding this Act, and explains why workforce issues are important in the disability community. You can watch it on Youtube.
Wrightslaw offers up-to-date information about special education law and advocacy for children with disabilities. This website offers articles, cases, newsletters, and resources about dozens of topics in the Advocacy Libraries and Law Libraries.
Organizations, Programs, and Projects
Administration on Intellectual and Developmental Disabilities
A federal agency that promotes person-centered services and supports for people with developmental disabilities. It works with and supports state agencies like developmental disabilities councils.
Association of University Centers on Disabilities
This is an association of university-based programs that provide training and technical assistance concerning services for people with disabilities.
Collaboration to Promote Self-Determination
This is an advocacy network of 22 organizations. They are working to assure that all people with disabilities have the chance to work and save money.
Community Living Policy Center
This national research center keeps track of the state systems that help people with disabilities to live in the community.
Disability and Health Data System
An online system that provides a lot of disability statistics in the United States.
Disability Employment Initiative
This federal initiative helps youth and adults with disabilities who are unemployed, underemployed and/or receiving Social Security disability benefits.
Employment for People with Disabilities: Little Is Known about the Effectiveness of Fragmented and Overlapping Programs
A report on the United States government programs that support employment for people with disabilities.
Housing Choice Voucher Program
This online fact sheet explains a federal program that helps people with low incomes afford rent in market rate apartments. It helps people with disabilities live in the community.
Learn the Signs. Act Early.
This initiative helps parents, doctors, and everyone notice signs of disability in babies and very young children.
Mainstream Category 2 Vouchers
This program aims to help people with disabilities move out of institutions to live in the community. It is a joint effort of the US Departments of Health and Human Services, and Housing and Urban Development.
Money Follows the Person Grants
This federal government program assists states in helping create more opportunities for the elderly and people with disabilities to move from institutions to the community.
National Association of Councils on Developmental Disabilities
This association supports and assists the 56 individual Councils on Developmental Disabilities around the United States.
National Association of Developmental Disabilities Councils
An association representing the 54 State and Territorial Councils on Developmental Disabilities.
National Association of State Directors of Developmental Disabilities
Association of state developmental disabilities agencies
National Association of State Mental Health Program Directors
This organization is interested in improving the quality of state mental health service systems.
National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)
This federal agency funds comprehensive and coordinated programs of research and related activities with an aim to help people with disabilities participate in the activities of their choice.
National Resource Center for Participant-Directed Services
A research center that helps state and local government agencies to develop and improve their participant-directed options.
Reinventing Quality Conference
This national conference shares the best of what is happening in services for people with disabilities. It happens every two years and attracts a wide variety of audiences.
Social Development Partnerships Program-Disability Component
This Canadian government initiative supports full inclusion of people with disabilities.
State of the Science: Disability and Rehabilitation in Rural America
This was a web conference about the needs of people with disabilities in rural areas, and how best to meet them. Full papers, videos and transcripts are available.
The McCrery-Pomeroy SSDI Solutions Initiative
This initiative is looking at better ways to manage the SSDI program. This is important since it predicted to run out of money in 2017.
The President's Committee for People with Intellectual Disabilities
An advisory committee to the President of the United States on issues of people who have intellectual disabilities.
The State Employment Leadership Network
This is a network of 26 state developmental disability agencies that are working to improve employment opportunities for people with disabilities.
Wrightslaw offers up-to-date information about special education law and advocacy for children with disabilities. This website offers articles, cases, newsletters, and resources about dozens of topics in the Advocacy Libraries and Law Libraries.
2014-Workforce Innovation and Opportunity Act
This Act from the United States Congress helps individuals with disabilities have better jobs.
President Bush's New Freedom Initiative
On February 1, President Bush issued an executive order aimed at improving services and supports for persons with disabilities
Presidential Executive Order Implementing Olmstead Decision
President Bush's Executive Order instructing federal agencies to take steps to implement the US Supreme Court's 1999 Olmstead decision

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This web site is maintained by the Research and Training Center on Community Living with support from the National Association of State Directors of Developmental Disabilities Services, the Human Services Research Institute and the Administration on Intellectual and Developmental Disabilities. E-mail weste050@umn.edu.
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