There are approximately 54 million Americans with disabilities, approaching 20% of the U.S. population. In some states, nearly 1 in 4 residents has a disability. Almost half of these citizens have a severe disability that affects their ability to see, hear, walk, or perform other basic functions of life. In addition, there are over 25 million family caregivers who provide aid and assistance to people with disabilities.

States and territories are engaged in efforts to provide new and enhanced community living opportunities to citizens of all ages who experience disabilities and chronic illnesses. One reason for this is the 1999 Supreme Court Olmstead decision, which requires states to provide integrated community settings as alternatives to institutional care for persons with disabilities. Another catalyst for states investing energy and resources in developing important community care options may be that findings from recurring studies over the past 20 years that have indicated that people prefer to remain in their own homes and communities for as long as possible. Some states are specifically focusing on eliminating the institutional bias inherent in publicly funded programs and creating community-based options with increased control by consumers, while others are seeking to enhance access to information, support informal caregivers, and ensure quality.

State innovations occur within the context of a state's unique fiscal, cultural, and historical environment, thus not all will not approach implementation of the Olmstead decision or opportunities created through various federal system change grant programs in the same way. Some states are undertaking comprehensive reform of their entire system of home and community based care, while others are identifying specific components as targets for incremental improvement by focusing on system aspects such as eligibility systems, housing, personal assistance services, financing mechanisms, and case management systems.   And some states are working to integrate healthcare, social support services, and technology to improve access and coordination throughout the LTC system.

Regardless of the approach, states and communities seek accurate and timely information to assist them in making important decisions about their state long term care system and how they can better coordinate their Medicaid programs with the tenets of the Americans with Disabilities Act and the Olmstead requirements.

General Resources on Disability, Systems Change & Community Living

HCBS.org - Clearinghouse for the Community Living Exchange Collaborative provides a hub of information sharing, training and technical assistance for more than 180 recipients of Systems Change Grants for Community Living in all 50 states, two territories and the District of Columbia.

Independent Living Research Utilization - serves as a national center for information, training, research, and technical assistance in independent living. Publications and webcasts on specific topics are available.

DisabilityInfo.gov - this site provides access to disability-related information and programs available across the government on numerous subjects, including civil rights, education, employment, housing, health, income support, technology, transportation, and community life.  Numerous links to state, national and international statistics on disability-related issues.

CMS Promising Practices in Home & Community Based Services - a series of promising practices reports on home and community-based services to assist states, in partnership with their disability and aging communities, to strengthen their community long term care support systems.

National Dissemination Center for Children with Disabilities - research and resources about children with disabilities.

Census Bureau Data on Disability - various briefs, reports, and tables with disability statistics, many with state specific data. [Note: the Disability Status: 2000 report reflects data on non-institutionalized persons over age 5 only.]

CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD) - provides state and national data on a variety of health-related issues, including disabilities.