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Long-Term Care Today: A System in Need of Change 

Today’s long-term care system strains to accomplish tasks for which it was never designed for a population whose magnitude was never envisioned. All stakeholders in the system confront a series of challenges.

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A Roadmap for Reform

America’s long-term care system faces serious challenges, but there is also great potential to build workable solutions. Over the next 12 months, the Commission will lay out a roadmap for reform focusing on six key areas. 

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Long-Term Care Today: A System in Need of Change 

Today’s long-term care system strains to accomplish tasks for which it was never designed for a population whose magnitude was never envisioned. It does so while limited by a host of financial and regulatory constraints that can be more likely to stifle innovation than to accomplish their original purpose of protecting the vulnerable. All stakeholders in the system confront a series of challenges.

  • Individuals face a loss of independence from disability, a shock too often compounded by loss of home, loss of income and assets, loss of family and community activities and loss of choice among long-term care service options.

  • Families provide the most support to those with disabilities, often at great personal sacrifice, but they receive little information, training, financial assistance, or respite--nor professional services to support them in their efforts. In addition, the wisdom they possess about the needs of their loved ones is too often untapped.

  • Direct care workers who do the physically and emotionally demanding work of providing service receive little respect from either the medical community or the community at large, are paid low salaries with few benefits and confront the demoralizing reality that they often have little opportunity for advancement. A lack of adequate training and proper equipment also results in alarming rates of injury.

  • Provider organizations are under pressure to deliver high-quality services, but payments by government programs frequently fall well below what meeting those expectations truly costs. The industry’s inadequate capital base means that the financing needed to modernize or replace antiquated equipment or physical plant is often unavailable. Not only institutions, but home- and community-based service providers also have difficulty attracting and retaining trained staff.

  • Regulatory agencies are routinely too understaffed to enforce regulations meant to protect and improve the lives of individuals receiving long-term care. Even those regulations that are enforced often have little impact on low-performing providers. Instead, the mediocre survive and those who would innovate in the name of high quality receive few incentives or rewards for their efforts.  Regulators and providers alike lack a consistent understanding of long-term regulations and guidelines, and both need training to develop consistent expectations.

  • Medicaid agencies that must manage competing demands for acute care and long-term care services with limited budgets routinely confront ingrained institutional biases that are only slowly beginning to recognize the role that can be played by home- and community-based services for those in need.

  • State and federal policymakers face competing pressures to keep taxes low while dealing with mounting costs for all forms of health care and the need to provide other governmental services. They struggle to improve the quality of care and reshape the acute and long-term health care systems while preparing for the enormous demands for services that the Baby Boom generation is sure to make.



A Roadmap for Reform

We as a Commission are committed to laying out a roadmap for comprehensive reform of the nation’s long-term care system. Over the next 12 months, we will focus on six key areas that challenge us as Americans:

Culture Transformation 
We as a society must transform the culture of long-term care through organizational innovations that improve individuals’ quality of life and the quality of their care. Promising initiatives include resident-centered care and the sensitive provision of palliative and hospice care 

Empowering Individuals and Families 
We must empower individuals and families by creating a greater array of high-quality, accessible and affordable long-term care services, especially services available in the homes and communities where those who need those services live. We must provide family caregivers with the information, support and training that enable them to continue their central role in the lives of those with disabilities. 

We must support those who provide care by improving their work conditions, pay and benefits, and by ensuring them greater opportunities for training and advancement.  

We must use technology more effectively to enhance consumer independence and promote consistently better quality of care. We must design a health information technology infrastructure that addresses the unique needs of long-term care users and providers while ensuring the interconnectedness of electronic information--as well as consumer privacy and security--in both the long-term and acute-care systems. 

We must institute long-term care regulations that are anchored in accurate and timely information. Those regulations should be uniformly implemented and should include both strong enforcement provisions and provisions designed to continually improve quality and innovation through appropriate interventions and incentives. 

We must ensure that all Americans have access to long-term care financing in their time of need. Public and private financing should work together to enhance individual choice about care options and settings, improve quality, reward innovation, and demonstrate fiscal responsibility.