August 20, 2014
By Richard Gelula, MSW
Executive Director, National Consumer Voice for Quality Long-Term Care
September 1 will mark the six month anniversary of the date I joined Consumer Voice. It seems appropriate to use my own voice to reflect some of what I have seen, heard and learned during these months. Here are more than a few observations:
The field of long-term care is among the most important in our society. It addresses how we care for people – particularly frail elders and people with disabilities – who need care and support to function and remain otherwise healthy and alive. I have learned that because they are older, frail or disabled does not reduce the amount or quality of care to which they are entitled.
The field of long-term care (LTC) is blessed with compassionate, knowledgeable and smart people who come from a wide variety of professions and perspectives. The thought leaders in long-term care embody literally thousands of years of experience and thinking about the issues and challenges of long-term care. My belief is that they deserve a higher platform and we must give them opportunities to be listened to!
The long foreseen “aging of the Boomers” is going to create a tidal wave of people who at the very least have some dependent care needs. Service options are expanding and along with more flexible public sector financing they offer hope for tailoring services to individual circumstances. However, overall, neither the Boomers nor our society are preparing for this demographic tidal wave and we will be overwhelmed by it. As a result, quality care will be expensive and in short supply.
Long-term care is a very complex field because no two people, no two circumstances and no two providers are alike. As a result, it is hard to make generalizations, but I think we can agree upon standards that should be the goals for every care-providing circumstance. For instance, critical care principles are enshrined in the statement of Residents’ Rights under the Nursing Home Reform Act. Such standards are based on the natural rights of the person and should be a requirement of all settings of long-term care without exception. What appears to be lacking is the will to enforce them.
Losing even a single aspect of one’s independence too often results in isolation either within a facility setting or at home. We must do all we can to “open the doors” and give people depending on care services the opportunity to engage with others. In this regard, we are seriously under-utilizing the gifts and benefits of volunteers. We are also not taking advantage of digital technologies and how they can be used to enhance the consumer’s experience. However, the millions of people who require dementia care also need the benefit of caregivers specifically trained for their needs.
Our greatest failing is not educating people about the realities of aging, how to plan for life after employment, what to know about long-term care, and how to be a caregiver. These aspects of education are not an option, but are as essential for life in our society as preparing for a career. Failure to educate about aging and long-term care not only hurts individuals, but stymies effective policies, including public-private collaborations.
No single method appears to be the sole solution for achieving quality long-term care. All of the key approaches for promoting quality care, including professional training and ombudsmen services for example, are not exclusive of one another. Who can disagree with all long-term care being person-centered and consumer-directed or that every facility that has residents in its care should be guided by the principles of “culture change?” I am thinking, however, that quality care should not be a matter of choice or election made by any one provider: doesn’t every long-term care consumer deserve to have their human, cultural, civil, patient and legal rights respected, regardless of the location of their care or the choices made by their provider? That is why standards governing long-term care also make an essential contribution to achieving quality care and must be a requirement, not an option. I am hopeful that differences of opinion and approach among many LTC interests will come to be seen as complementary and not necessarily as adversarial.
Despite all they do already, we need even greater support and education for family caregivers. In fact, doesn’t the entire field, including all LTC providers, need to be doing more to involve family members and volunteers as well as preparing for and advocating for national service programs to expand and augment the LTC workforce? That relates to our biggest remaining need as suggested above: education and support. We have yet to see the impact and benefit of consumer education and support for quality long-term care.
The preponderance of evidence clearly shows that better staffing underpins better care – in all settings. By “better staffing,” Consumer Voice means that there are a sufficient number of well-trained, well-supervised and consistent personnel to deliver quality, personal care. No doubt, all LTC workers require employment protections, benefits and training that enable them to have a stable caregiving career – otherwise in the expected tightening labor force of the near future, there will not be enough people willing to work at providing quality LTC.
Overall, many of the organizations advocating for quality long-term care and related concerns are under-financed. Both Consumer Voice and other nonprofit LTC advocacy organizations need greatly expanded support from the public and from all of those who have learned of the need to focus policy, research, education and support initiatives on this critical service area. We must unabashedly ask for public support for our services – and there is no time like now to manke a contribution!
I doubt that these points are new or controversial for the many people working to deliver and achieve quality long-term care; they are only “new” to someone like myself who has just re-entered this field. What I see in them are further opportunities to promote and achieve quality long-term care. Two of the elders in my own family, ladies who have lived for more than 90 years each, currently benefit from long-term care services and I know personally the dedication, compassion, patience and knowledge required to be an effective caregiver. We have fruitfully made use of local ombudsmen and I cannot say enough about the integrity and value of these professionals. Not only have my family members and their caregivers taught me a great deal about the realities and challenges of LTC, but I have also been helped by our staff members at Consumer Voice, board members, consumers themselves, colleagues in partnering organizations, LTC ombudsmen as well as conversations with our founders, like Elma Holder and predecessors like Alice Hedt. As I continue in my role at Consumer Voice, I hope to do the utmost to support the organization and our collaborative efforts that aim to benefit everyone depending upon LTC services.
August 20, 2014Back to News Listing