NCD #04-465
October 26, 2004
Contact: Mark S. Quigley
202-272-2004
202-272-2074 TTY
mquigley@ncd.gov

National Council on Disability Calls for Change in Consumer-Directed Health Care

WASHINGTON—The National Council on Disability (NCD) today called for a change in the way business is conducted by funders, policymakers, and researchers in consumer-directed health care for people with disabilities.

The report, Consumer-Directed Health Care: How Well Does It Work?, offers a clear picture of the strengths and limitations of our Federal Government’s current research agenda related to consumer-directed health care for Americans with disabilities. It sheds light on the relationship between consumer-directed health care and practice. It also provides a basis for policymakers who use health research evidence to make informed policy decisions (e.g., about MiCASSA, Money Follows the Person, Olmstead, and Real Choice Systems Change Grants) in keeping with the intent of the New Freedom Initiative.

One overarching recommendation in the report according to NCD chairperson Lex Frieden is that, “Consumers representing a wide range of disability perspectives should be included in decision making at every step in the process that ultimately shapes programs: from development and implementation of a research agenda through policymaking to program design, oversight, and evaluation. Consumers provide a truly unique source of information about the human services and health care delivery system.”

This recommendation touches on both the conduct of research and the design of services, and is applicable to a wide range of government agencies—those that play an explicit role in disability policies or programs (e.g., the Social Security Office of Disability Determinations, the Administration on Developmental Disabilities) and those that have an impact on disability even though it is not their focus (e.g., the Administration on Aging, the Food and Nutrition Service Food Stamp Program)—and private sector organizations.

NCD’s study includes a systematic review of the literature on consumer-directed and -oriented care. It was shaped by guidance from a national consumer advisory board and refined based on interviews with key informants in relevant fields of research, policy, and program administration.

NCD’s recommendations also include:

–Services need to be individualized, with consumers offered as much flexibility and choice as is feasible in relation to a given type of care.

–Services should, wherever possible, be designed to serve individuals with a broad range of disabilities. This flexibility will yield more individualized and therefore better services for individuals within, as well as across, disability groups.

–To achieve flexibility and accommodate diversity, consumers with different experiences and perspectives must be included at all stages of program design, implementation, and evaluation.

–Establish a locus of responsibility for programs and services within the federal government related to the health and well-being of individuals with disabilities. The market has not, on its own, created the continuum of services required to meet consumer needs: health care personnel is one example. We do not need a new clearinghouse or committee; this is a call for assigning a federal agency programmatic responsibility in the area of health and well-being of individuals across the spectrum of disability. This focal point exists for children with special health care needs in the Maternal and Child Health Bureau of the Health Resources and Services Administration, but does not exist for adults with disabilities.

–Make response to critical personnel shortages a first order of business for this newly identified unit of government. The agency should address recruitment, training, and supervision of personnel to supply labor adequately and responsibly for community-based and consumer-directed care options.

–Incorporate opportunities for choice wherever possible, even in institutional settings. Both studies and interviews indicate that best outcomes occur when consumers can make their own choices among services options. Even in nursing homes and other institutional settings, there is room for choice about activities and services.

Taken as a whole, NCD’s recommendations imply a major shift in the way government, private agencies, and even to some extent consumer organizations think about organizing and locating, and managing health care for people with disabilities. They imply a movement away from a narrow diagnosis-focused approach with a limited range of service options to a cross-disability, lifespan approach in which funds are available to meet individual needs. They imply a shift in the role of government from oversight of tightly defined program options to a broader responsibility for ensuring that a set of definitions and protocols are available to support the development of a knowledge base in this area, that those tools are used to assess consumer needs on an ongoing basis across disability groups and age categories, that resources are directed to fill gaps in the service continuum, and that programs meet rigorous evaluation standards for consumer-defined outcomes in domains that include not only direct satisfaction with services but also quality of life, health, mental health, and function.

For more information, contact Mark Quigley or Martin Gould at 202-272-2004 or 202-272-2074 TTY.