"Advocacy requires independence. It should not have an agenda.
If it's dictated by government or politics, then it really isn't advocacy anymore."
There may be some organisations that represent themselves as aged care consumer advocacy groups. Spokespersons for these groups say that they promote quality aged care and they are there to help you.
How do you know the authentic advocate from the industry front organisation? How would you know if they will actually help you or simply waste your time or worse?
Aged care consumer advocacy would not be necessary if the message of the aged care industry is accurate. Aged care representatives would have the public believe that there are no serious problems stemming from the highest level of administration in aged care facilities. They contantly blame problems on mainly lack of funding issues.
At the same time, employees toil under great stress, often in under-staffed facilities, shouldering a burden or case load that is beyond one person's abilities. Managers of facilities consciously choose to under-staff facilities or services so that profit is maximised for those at the top or shareholders in the for-profit aged care corporations.
Industry representatives and lobbying groups have a legitimate function in helping agencies to better administer their agencies, work together to promote improvements in the industry and to communicate with the public as well as government officials.
Industry friendly groups perform valuable research and provide invaluable assistance in innumerable ways to aged care administrators. They are not aged care advocates, although some of these organisations would like the public to believe that they are advocates.
7 essential traits of effective consumer advocacy groups
- Independence: Do not allow industry agencies or groups as members
- Won't just tell you to "work it out with the nursing home" (you already tried that or you wouldn't need help!)
- Willingness to help, listen and believe
- Willing to publicly advocate - and speak out against abuses in aged care
- Acknowledgement of problems
- Provide information - re standards of care and charter of resident's rights
- Follow the money trail
1. Independence: Do not allow industry groups as members
Real advocacy support groups will never allow the industry being monitored to become members or otherwise compromise the integrity of the advocacy group. Industry "front" organisations will loudly proclaim that they promote better care, but their membership includes industry agencies, lobbying groups, associations on both a local, state or national level. Front organisations are sometimes very large, and therefore some individuals are impressed that what they say is "authoritative" or accurate.
Being large simply means that the industry is using the front organisation for their PR purposes. These front groups may be extremely powerful, very well funded and consulted by the media for "official" statements about their industry. However, they are not always accurate in their reporting about the condition of our aged care system. They deny the obvious and protect the agencies that make up their membership.
State or national associations representing hospitals, retirement villages, hostels or nursing homes are NOT advocacy groups. Their membership is made up of the agencies themselves who may be committing the violations. These associations accept membership dues from the agencies themselves. They will never embarrass the agencies by publicly broadcasting the truth. They will use all their public relations expertise for "damage control" and vigorously deny any wrongdoing in the industry involved. Various reasons are given - the most common is "these are isolated incidents in the industry".
Various Government aged care committees are stacked with primarily provider and employer group organisations, who would most likely have their members interests at heart. "Consumer representation" groups on this committee are minimal, and therefore likely to be ineffective.
2. Won't just tell you to 'work it out with the nursing home'
(you will have likely already tried that or you wouldn't need their help!)
Aged Care Crisis has received complaints from families about organisations that simply tell them to go back to the nursing home that is refusing to provide care. If the family has already spoken with the nursing home and spoken with management at the home unsuccessfully, then the family needs to consider other more helpful options.
Some nursing homes will not encourage families to lodge a formal complaint and may also actively discourage families from seeking legal advice and representation.
If not, then you need to think about the validity or weight of those "five star" or favourable reviews - are they really a true indication of the service - or do they exist to make the service look good and used as another marketing tool?
3. Willingness to help, listen and believe
Legitimate advocates will help you understand what violations (non compliances or sanctions, for example) may have occurred, and they will explain the standards of care as they apply to your situation. Advocates will analyse what is occurring or did occur, and will help clarify the separate non-compliances or breaches that may have occurred, and will also inform you about how to write an effective complaint. Legitimate advocates will listen to you and your account of what happened or is happening. They will be willing to discuss the details and go over the standards of care that apply in each situation. While they are not government inspection agencies, they can help you with the problems and clarify the situation for you. While legitimate resident advocacy groups will also provide basic facts and encourage communication with relevant groups, they will go further and work with you step by step.
If you need support, that is what they will provide. If you need facts to strengthen your position when communicating with an agency, that will also be provided.
Front organisations are likely to give you concocted "lines" that belittle the authenticity of your account. They often will tell you that you are simply being "emotional," having trouble "grieving" or that you don't know what you are talking about.
It is common for these types of groups to condescendingly suggest that what you are reporting is not accurate or that you only need to "communicate" more with the facility involved. These may be industry-friendly groups and will be reluctant to admit that the facility itself may intentionally be under-staffing or violating standards of care.
Real advocacy groups will encourage you to take whatever action is necessary to access all the resources available to you to correct the situation.
4. Willing to publicly advocate
Legitimate advocates will speak out publicly about abuse, neglect and exploitation of residents in aged care facilities. They will always ensure that they evaluate the situation objectively.
A good indication of how diligent in advocating for your rights are to check the advocacy group website for starters - are they outspoken and if so, do their media releases, public statements (including media), and submissions to various inquiries reflect this? What is on their home page?
Can you find a consistent stream of media releases or articles, for example, where the consumer advocacy group speak out about aged care homes who have failed care or cases of neglect in homes? Do they speak out about fradulent activity in nursing homes? How many complaints have they assisted members with (not just figures plucked out of an annual report)? Have they been influenced by industry or government dominated groups policies or stance?
5. Acknowledgement of problems
Legitimate aged care advocacy groups not only admit that there are serious problems, but are at the front informing the public about the reality in aged care. Government protections are too often inadequate - similarly government enforcement and prosecution. Why do we hear about many nursing home violations, but see so few, if any, convictions of the managers responsible at the top?
Many medical practitioners, nurses and other aged care workers feel that aged-care is no longer a field where one can achieve job satisfaction.
Groups which are fronts for the aged care industry will state that problems are rare.
They will almost always repeat that "problems are rare" and any fraudulent or illegal activity is due to an "isolated incident", "bad apple" or employee and not the nursing home or provider itself.
Legitimate resident groups recognise that managers, boards of directors and executive officers can themselves be the source of violations of standards of care and fraud in aged care, that policies which violate the laws can be set and instituted from the board level. They will let you know, that it is the facility management or administration that may intentionally short-staff a facility, or under-serve the residents.
6. Follow the money trail
This is now 2015. By now, aged organisations now have access to get their message out to the masses via a multitude of technologies. It is easy to check the group's website, have a look at their media releases, blogs, newsletters and check their Twitter posts, Facebook presence and followers. You can even pay a small fee online and receive a credit report (one off fee) for basic information about company structure or who are the directors.
Even if the group is classified as a not for profit group - check their annual report. How are they funded - by a strong membership base - or by government? If a large proportion comes from government funding or industry, can the group be trusted in making announcements and decisions in their membership's best interest? Really?
7. Provide information
Legitimate resident advocacy groups will provide you with all the information they can about what the standards of care are for nursing homes. They will not be vague, but rather will provide you with a way of getting your hands on the actual regulations and laws governing the provision of aged care in nursing homes. Some will post the regulations, some will tell you where you can get them. But real advocates will not dissuade you from looking at the regulations and they will encourage you to become more informed.
Real advocates will explain the standards of care, what services should be provided and will readily explain what went wrong if a facility did not provide appropriate care or failed to provide needed services. Real advocates will mention your right to file a formal complaint and the process - as well as assisting with your complaint. Front groups will almost never tell you to contact the police, which you may need to do if you believe that an offence has occured.
Credit and Inspiration: Inspiration from Hospice Patients Alliance, re-authored for Australian audience