I believe I need to unite with other family caregivers and caregiver advocates so that our voices raise loud enough to be heard and we no longer feel isolated. I want to do everything I can to live my best life independently so that I will not be a burden on those I love. I wholeheartedly believe that if Caregivers isolate themselves and try to take on every task, caregiver burnout is inevitable.
Interested in writing your own manifesto? I LOVE your manifesto!! I wish I could get a PDF of it! If you ever offer it as a download, please let me know at journal gmail. Capitate primary care with payment rates reflecting the outcomes of care. Fee-for-service payment is an anathema to chronic disease care. Incentives would reward better outcomes such as reduced use of emergency rooms and hospitals and stabilization of clinical trajectories.
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Primary care providers would be incented to work with LTC providers to create more effective chronic disease management systems. Regulations for both good and bad care.
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Such regulations would emphasize appropriately case-mix adjusted outcomes and, to a lesser degree, process. Requirements for training would be liberalized to allow for innovative supervisory methods and structured practice.
Care would be provided largely by aide level workers supervised through smart phones or other information technology. Some level of clinical supervision by professionals would be needed. It could use clinical tracking forms to oversee aides in monitoring conditions and provide a vehicle for reporting changes in client states that would trigger a more complete assessment. Caregivers would be trained and competent to provide care in a way that minimizes discomfort and provides the greatest consideration and respect for the individual.
Informal care is the backbone of LTC. Family members should be eligible for assistance—both financial and supportive. They need better tools and training. If we are reluctant to pay them outright, we can use more programs that cash out benefits and allow consumers to pay friends and family for care. Universal coverage of LTC services would be designed as back-ended.
Family care could count as the initial care expended to establish eligibility for support. Private insurance could likewise be used to pay for the initial care. A definable risk period would make insurance products to cover the front end more attractive and affordable. Implementing such changes will be difficult.
Perhaps the biggest obstacle is the sunk costs. Large corporations, both for-profit and not, have built or acquired many large institutions. Ironically, the LTC business began as a real estate business Mendelson, Perhaps it can return to that. Buy-outs may be needed. Incentives for re-orientation will be necessary. A major push-back will come from the people who have spent their lives working to improve LTC. Like World War II veterans, they paid for each inch of beach captured with their blood.
They are not prepared to relinquish any toehold on regulations they fought so hard to establish. Somehow they must be won over or worked around. The nature of LTC has changed, as has the theory of regulation. The passage of quality assurance performance improvement QAPI legislation reflects this new thinking to some degree.
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Quality improvement is now at least on a par with quality assurance. Rewards for good care are just around the corner. Some system for rooting out egregious care will always be needed, but it cannot be allowed to dominate. The caregiving shortage is another barrier. Both paid and unpaid caregiving needs to be made more attractive.
We can never realistically escape the reality that both formal and informal caregiving relies on exploitation. Families sacrifice a great deal to provide care. Wages must be raised, but they will never be high enough to attract hordes of workers. Instead, the work itself needs to be made more rewarding. Most caregivers choose this work as a way to serve, but they need to see that all their effort yields a benefit. Some clients are capable of expressing gratitude for kind and competent care, but many are not. One solution is to create a better information system that shows caregivers how much difference they make.
As with chronic care in general, the only visible outcome is decline. In order to appreciate the benefit of good care one needs a comparator of what the course would be in the absence of such care. Good LTC slows rate of decline; in some areas this slowing may address functioning, in others it may address quality of life, or both; but an effective system should have some measurable benefit albeit not solely within a medical framework.
This information has to be packaged into simple messages that convey gratitude and provide positive feedback. It needs to be used in creating incentives to reward good care. This threat extends beyond LTC as well. Effective chronic disease management is central to any effort to improve care outcomes and control costs. Reallocation of resources, improved rewards for better primary care, and new training programs will all be needed. Nurse practitioners can play an important role in increasing the pool of primary care providers Mundinger et al.
The challenge in urging greater flexibility in care arrangements is how to combine that with more responsibility and accountability. Structures need to be created that hold all three core care elements accountable. LTC is the result of joint production. It will succeed only when all participants including the client share a set of common goals, which care form the basis for accountability. Greater flexibility raises the specter of exploitation.
The media regularly features stories of fraud and abuse, but these are a small minority of all care. We need to actively prosecute the scallywags, but vigilance in detecting them cannot stand in the way of building a system that allows more individualized values and creative ways to deliver desired care. The ultimate challenge is how to create an appetite for change. LTC currently carries a strong negative image. We need to create a public dialog about LTC that will make it a political issue.
When politicians campaign on a platform of improving LTC, we will have achieved a milestone. To convince people at all levels that improving LTC is both feasible and worthwhile we need to start by changing the vocabulary we use to describe LTC. Public discourse should focus on how to achieve these ends. There is reason for optimism. In the face of changing demographic and economic realities, our society has made great social strides in the past decades.
So it is with LTC. We cannot continue down the current LTC path. Alas, we cannot take both forks. We need to start planning actively for a new form of LTC that addresses the primary goals of such a service and is affordable. Making large scale change will inevitably generate opposition. A lot of people and organizations have heavy investments in the status quo. Re-inventing LTC will involve giving up some cherished beliefs.
The first step is to free ourselves of ideas we have internalized over the years and start with as clean an intellectual slate as possible. Get back to basics. What are the primary goals of LTC? What are its core elements? How might they be repackaged to achieve desired social ends? I believe the goal is allowing people to age with dignity and choice.
The three building blocks of LTC are housing, personal care, and health care. Everything else about LTC is on the table. Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide. Sign In or Create an Account. Sign In. WE will strive for an end to violence against women and girls, once and for all.
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