Part 1: Our problem

Long-term care – three very big words in the press (see references). The pandemic has brought this issue to the forefront and thanks to the military report of its intervention in Quebec, we are informed of the fundamental failings of too many long-term care facilities. The public is now aware and they want something done (please check the attached references for a video chaired by Peter Mansbridge). From it, we can learn much and here are some examples:

• More than 80 per cent of all Covid-19 deaths in Canada were in long-term care facilities;
• Most deaths in long-term care facilities occurred in disgusting conditions; and
• More than 80 per cent of all deaths in those long-term facilities were people afflicted with dementia.

Deplorable!

In Ontario, the governing party is ready to spend more than a $100,000,000. They promise more beds; they promise more, better trained staff; and they promise more inspection from inspectors who don’t know what to inspect during carefully timed and scheduled inspections. In addition, we have an opposition party which only wants support for its recommendation to replace private/for-profit suppliers of long-term care facilities with public suppliers. It’s not so simple as public versus for-profit. There are good and bad examples prevalent in both private/for-profit and public managed facilities, but some of the best are in private/for-profit facilities and some of the worst are in public facilities.

A better provision of long-term care (LTC) requires correction. People with dementia are not the only ‘persons-in-need’ of help, but they are the largest proportion of the population receiving LTC to date. The Alzheimer’s Society of Canada has chapters providing services and support for people with dementia across the entire country. The Society should be taking a lead with discussions with its members ... and in any and all discussions of LTC with governing authorities and the press.

The Mansbridge Panel also tells us that 90 to 97 per cent of people in Canada don’t want long-term care facilities: they want support and they want to die in their homes. Unfortunately, for a wide variety of reasons support and dying at home are not viable for many persons with dementia. A better foundation of service/support experiences and a better examination of real possibilities will help people with dementia and their primary supporters create better plans for living to the end.

Service/support foundations and the choice for living domicile should be based upon person-centred planning through a personal care plan (PCP). Personal funding should be based upon the PCP and paid directly to the person in need. Professional support and personal services can be provided in specially designed facilities and/or private homes, or some combination – whomever can do it better. And people who can, can do it at home. Their costs may be supported by the degree of need specified in their PCP.

There is much to discuss and unfortunately, fear and ignorance seem to pervade the discussions to date. Where are the people who may know something? The press needs to know; governments need to know. There is so much more to know and share. Let’s inform ourselves and step up to help the government and supportive agencies – with real experiences and without prejudice. We’ll never have a better opportunity.

"All too often, this is one aspect of living most people tend to avoid or postpone, and unfortunately, this lack of planning and commitment leads to most of the prevalent distress of long-term care."

– Ron Posno

Part 2: Our solution

BACKGROUND: Providing and supporting long-term care in Canada is a major opportunity to correct a long-standing problem. More than just correcting past failures, this plan is a way forward based upon client needs and wishes. It outlines how government can provide leadership, general support, and ensure that citizens may exercise choice in the provision of services and a home that is safe and professionally sound.

1. Older people — particularly those with physical and/or mental problems — must accept personal responsibility to undertake a plan for themselves. Spousal and similarly close care providers may help; special counsel may come from supportive agencies like Alzheimer’s Society and public health counsellors. But professional helpers like lawyers, whose services are usually limited to the legal provisions of wills, can undertake a leading role in ensuring that elder clients are undertaking a planning provision for end-of-life. Lawyers may not have the expertise to assist, but they can properly advise of appropriate resources and persons who can help in creating an end-of-life plan that could be attached to the will as an instruction for the power of attorney (POA) and the executor.

All too often, this is one aspect of living most people tend to avoid or postpone, and unfortunately, this lack of planning and commitment leads to most of the prevalent distress of long-term care. It is a personal responsibility — but, spouses, siblings, and children all have a share. No excuse is acceptable and every mom or dad — or anyone fortunate enough to become older — must accept this fundamental responsibility.

If one waits until they need their plan, it will be too late. End-of-life planning should be undertaken while still cogent. Please take note: people with dementia, those with mental health issues, and those with physical disabilities and neuro-degenerative problems need to start earlier with specialized professional help. Don’t wait — your problems will only increase.

2. Anyone with any kind of medical or health issue will need a personal care plan (PCP) as a basis for creating his/her end-of-life plan. A PCP is a living document — it will change as health needs change. For example, a person with dementia may not need much in the early stage, but as the disease progresses, needs also progress. The PCP will anticipate these changes and document the needs and supportive requirements as living progresses.

A PCP may be prepared in consultation with medical practitioners and/or other specialized supportive personnel, but in all circumstances where financial or other specialized support may be applicable, the PCP must be reviewed and certified by a 'needs assessor' — employed by Ministry of Health. The PCP will be the key to accessing any support outside any personal familial supports.

3. Any person, regardless of age, should be able to access grants/tax deductibility for expenses related to medical/health issues and any extraordinary costs related to living expenses. These extraordinary living costs should include domicile modifications and employment of specialized staff like personal support workers (PSWs), nurses, therapists, and cleaning persons. The choice of modification and specialized staff and the use of grants/tax deductibility to alleviate extraordinary expenses — while the ultimate responsibility of the claimant — must be determined by a graduated scale of need as specified in the PCP.

4. The PCP must be reviewed annually, or more frequently, according to need as determined by the need assessor and/or the request of the person in need. Any change of graduated need must be reviewed and documented by the need assessor. All need assessors will be especially qualified and employed by the Ministry of Health.

5. Next to need is where the person-in-need will choose to reside. Surveys say more than 90 per cent of older Canadians want to live their last days and die at home (see references). That’s both understandable, and for some, entirely possible. Unfortunately, last days frequently lead to needs so severe they can best be supported in a special placement — not a personal home. Again, the PCP plays a major role. Counsellors and program suppliers may assist the person-in-need — in conjunction with familial care providers and the POA — to choose a better placement than home. This is never easy, particularly after the provision of residential modifications to assist living. But sometimes needs surpass anything that can be done at home.

6. Designated, specialized LTC residential provisions range from minimal to extensive. Some are merely apartments for seniors who wish nothing more than dining and cleaning assistance. And others may supply intensive medical and physical care provisions. Choice must be a balance of preference, need and cost. The sooner needs can be assessed and counsel provided, the better chance of a good choice. Too often, the person in need postpones any diagnostic assessment, fails to consult with family and is too fearful to seek qualified professional support. Consequently, the person in need has effectively chosen failure.

COVID-19 has pushed the provision of LTC to the forefront. LTC lacks sufficiency as well as care standards. And the problems are not merely a separation of public versus for-profit facilities. Often, for-profit facilities lead and public facilities fail ... and vice-a-versa.

By all means, care standards must be established and supervised. But beyond standardization, it must be recognized that many people can afford the best and access should not be denied simply because LTC facilities are working to a common, often lower-denominator (standardization). In our modern world, standardization must range from acceptable to the best. Because they can charge more, for-profit facilities will often lead in providing better domicile and supportive services. And that’s good: the wealthier facilities can afford innovation, and the not-so-wealthy will have an opportunity to provide proven choices.

Conclusion: This proposal ensures the provision of choice, the provision of better facilities and services, and the provision of funding sufficient to permit better choices for not-so-wealthy Canadians. And it’s all based upon determination of need.

"... A care provider took the time to explain to all of us how he could spend $10,000 to $12,000 a month on care provisions for his wife — and she lived at home."

– Ron Posno

Personal perspective:

I am Ron Posno and I am 82 years of age. Almost six years ago, I was assessed with dementia. During my first year and in view of anticipated need, I undertook a swift and limited review of long-term care (LTC) facilities in the London area. Five years later, I am undertaking a similar review for the same reason. It’s limited to facilities I may afford and anything which may be new in the area. I am not considering anything which is rated below four on an industry standard of five (high).

Four years ago (before COVID-19), my wife and I — in conjunction with Dying With Dignity — volunteered as independent witnesses for MAID applicants. Consequently, we visited more than 70 LTC facilities and private homes. We saw the good and the bad — and everything in between. There was absolutely no
correlation. Private homes and privately sponsored facilities could be terrible and wonderful; and while public facilities may exemplify some excellent programs and supports, far too many are just simply mediocre and offer nothing more than poorly supported spaces.

Due to limited government funding, for-profit facilities frequently dominate the scene. Many are sponsored and run by religious organizations as hospices or just retirement homes. Private investors have stepped up and, in many cases, have provided professional management and staff. Some have gone so far as to design facilities which can be easily incorporated into the community and offer better support with specialized therapy programs and services.

Unfortunately, all the ‘goodness’ comes with a price. During a provincial meeting three years ago of the Alzheimer’s Society of Ontario, a care provider took the time to explain to all of us how he could spend $10,000 to $12,000 a month on care provisions for his wife — and she lived at home. Thinking he was extreme, I have been checking. He may have been high, but there are others who spend similar amounts. It’s not uncommon! But most common people cannot afford this.

The pandemic has opened the ‘can of worms'. Let’s do better, but don’t throw the baby out with the bathwater.

Remember: Nothing About Us Without Us