Get the Facts
According to recent statistics, Americans with disabilities and those who are aging are gravely concerned about preserving their independence and freedom.
- Seniors over age 65 fear placement in a nursing home and loss of independence more than death (Prince, 2007).
- Eighty-nine percent of seniors want to age in place; in other words, they want to grow older without having to move from their homes (Prince, 2007).
- Eighty-seven percent of people with disabilities who are age 50 and older prefer to live in their own homes (Kassner et al, 2008)
Many Americans are unaware that few options exist for seniors and people with disabilities who require assistance with daily activities and personal care. It is not until the need for long term services and supports becomes personal that most Americans even begin to experience and recognize the complexities of our nation’s health care infrastructure. It is often only then, when individuals have to manage these issues in their own lives, that they find a common theme prevails—the health care infrastructure is broken.
Therefore, this Call to Action requires each of us—consumers, the medical community, policymakers, program directors, academics, health care organizations, and human service providers—to become active participants in health care transformation activities that yield an improved and modernized health care system.
It is the opinion of this National Advisory Board that the modernized health care infrastructure required to meet the needs of people with disabilities and seniors, will only come about as others join with us in promoting and furthering the following six foundational principles.
Enhance Self-Care through Improved Coordination
- Transform America’s health care system from one that focuses on episodic illnesses to one that assists individuals in self-managing their whole health, with the support of providers and communities.
- Encourage the fundamental and financial investment in physicians to serve as the medical home for patients.
America’s medical community must be supported with increased education regarding the chronic health needs of an aging population. Personal physicians must be fundamentally and financially encouraged to serve as the medical home for individuals and coordinate an individual’s health care across all elements of the health care system and throughout all stages of life. It is essential that there be an investment in technology to improve this collaboration within the medical community, by encouraging evidence-based practice models for treatment of chronic health issues and co-morbidities. Physicians who have access to decision-support tools have increased ability to make informed decisions about quality health care options available to the individual. Through self-care monitoring, preventive health, and physician supported medical options, persons have the ability to live in the environment of their choice and play a key role in the decisions affecting their care.
Encourage Community Integration and Involvement
- Coordinate support services, housing, and transportation so people are able to participate in the social, economic, educational, and recreational activities available through community living.
- Promote data integration, continuity, and coordination of services through the use of health information exchange.
Every American has the right to fully participate in the social and economic mainstream and enjoy the benefits and freedom associated with that participation. Although progress has been made, much of the public policy affecting people with disabilities does not yet promote the goals of the 1990 Americans with Disabilities Act—equality of opportunity, full participation, independent living, and economic self-sufficiency. The fact remains that the majority of older adults and people with disabilities receive long term services in institutions instead of home and community-based settings (Kassner 2008). Other people with physical disabilities or mental illness who do not receive care in an institutionalized setting must constantly battle financial, environmental, and attitudinal barriers that inhibit their full integration into the community.
Uphold Personal Preference
- Leverage the success of long term service models that promote personal strengths and preferences and preserve dignity of participants.
Upholding personal preference is paramount when designing long term services and supports for seniors and persons with disabilities. Long term service systems must be responsive to the needs of persons across a full spectrum of disabilities and ages. Likewise, these systems must enable people to exercise choice about where they would like to live and control over the services they receive. Historically, the majority of long term service funding has paid for the provision of services in institutional settings.
We envision a future in which individuals are able to live in the environment of their choice and self-direct the services they need to live independently.
Empower People to Participate in the Economic Mainstream
- Encourage the employment of people with disabilities and seniors by removing disincentives for people to work and redefine antiquated descriptions of disability.
A transformational shift that empowers people with disabilities to obtain gainful employment cannot occur without first overturning misconceptions and redefining government terms that convey the idea that people with disabilities are inherently unable to support themselves. This requires a shift in our perception of government-subsidized programs from a social service model to a model that promotes participation in the economic mainstream through the use of tailored supportive employment programs.
We must promote the development of employer education programs about the services provided by workforce development agencies and other entities to support workers with disabilities.
Invest in Improved Technology
- Invest resources in the continued development of technology that improves individuals’ ability to self-monitor chronic health conditions and live independently.
The possibilities for living independently, self-managing chronic health conditions, or preventing pressure wounds (which have the potential for costly hospitalizations) are infinite through the use of innovative technology. Despite the benefits derived from technological advances, the budget restrictions of government systems restrain the investment of resources in new technology. To further advance technology for health care, resources need to be devoted for continued research and design as well as for looking beyond the next fiscal year to determine the future cost savings of implementing improved technologies.