Roger Foley's plea for the right to live with dignity [February 15th 2018]
Greetings, My name is Roger Foley.
I am a graduate of Carleton University with degrees in Economics and History. I am a former National E-Business Manager with the Royal Bank of Canada and founder of the Canadian Ataxia Conference.
In 2013, I earned a top volunteer award in Canada with the Prime Minister's Volunteer Awards.
Unfortunately, my life story is narrated through the horrible prism of a progressive neurodegenerative disease called Cerebellar Ataxia. I also have to deal with additional physical health challenges. I have gone from being an active person to on some days not even being able to get out of bed because of the neuropathy, chronic fatigue, and inability to coordinate my limbs.
Despite these physical challenges and deterioration, I have managed to keep a positive attitude. I have put a lot of research into my Activities of Daily Living and daily routines including nutrition and exercise routines. I have made and maintained physical gains where possible while also battling the deterioration of my diseases.
My condition is grievous and irremediable, but the solution is Assisted Life with Self-Directed Funding.
Unfortunately, the Ontario Health Care system and the Ontario Home Care system has broken my spirit and sent my life into a void of bureaucracy, accompanied by a lack of accountability and oversight.
Over 2 years ago I was admitted to Victoria Hospital as a direct result of very poor quality and deteriorating home care by my past service provider, a South West LHIN contracted agency. The very poor delivery and lack of oversight of my care within the LHIN has completely eroded my confidence in any contracted agencies. I need Self-Directed Funding in order to return home.
I need to be able to self-manage my own Home Care to ensure continuity, consistency, safety, and expertise. I need to be able to hire my own workers to build my circle of care that works with me so that we can work together as a team, to meet my needs and meet my goals. I have no desire to take up a valuable hospital bed but at this point it is my only option.
Please let me explain to you why.
MY JOURNEY
Growing up, I did not really know I had any diseases or disorders, but looking back, the signs were there. I had trouble with balance and coordination. I was constantly fatigued and in pain.
Throughout my teen years, I pushed through my studies and athletics. The pain levels were inconsistent: some days, the pain levels would be high where other days it would be tolerable.
I grew up with my dad who was a wonderful man. He had fought in the front lines of World War 2. Shortly after I was born his health began to fail.
He went legally blind. He had heart troubles, cancer of the bladder, and his kidneys failed.
When I was 11, my father was passing away and I became his caregiver.
The doctors only gave him 2 years with the cancer and health challenges he had, but he fought on and lived another 12 years. He taught me strength and perseverance, which I have relied on through my own struggles.
After his passing, my own health began to deteriorate further. Family, friend, coaches, and teachers told me to get medical help. My balance and coordination got worse, and my fatigue levels were beginning to intensify.
Despite this, I graduated from Carleton University. And I worked very hard and paid my dues in the economy. I moved around a lot and lived in many cities, and saw many Neurologists.
I thought I had decades but the deterioration was just catching up on me too fast, and unfortunately it came to the point where I physically could not work anymore. I was placed on Long-Term Disability to face these challenges head-on. I went from being in control of my life to being at the mercy of the health care and home care systems.
THE REALITY OF MY SITUATION
The reality of my situation is I need full-time support to live as independently as possible in my own home. I am approved for this full-time support in the contracted agency system. Within the South West LHIN, the way it works is one agency has the monopoly contract over all my hours of care. The other agency that is a possibility follows the same model of service with less hours available.
All LHIN regions work this way and it is absolutely ruthless. People with disabilities and health challenges have no freedom to choose the provider of their choice. These providers in turn rule in a sometimes cruel manner with very little to no accountability nor oversight.
At times, I've received some great care and efforts by some wonderful PSWs, and I truly thank them so very much. Unfortunately, when I received sub-standard care the recourse options were ineffective.For instance, I've been given the wrong medications, I've been provided spoiled food where I got food poisoning, I've had workers fall asleep in my living room, burners and appliances constantly left on, a fire, and I've been injured during exercises and transfers.
When I would report these things to the agency, I would not get a response. When I would escalate these matters to the LHIN, no action was taken. Unfortunately, people who seem to be ‘getting help’ like I was are not being helped near enough.Workers I do not trust and did not know how to meet my needs were constantly scheduled to come into my home against my objections. My objections were met with threats from the agency to not send anyone at all.
What was I to do?
The result of the very poor quality of care I received in my own home led my thoughts towards suicide. It's a difficult admission for me to make, but I know with increased awareness of mental health that I am not alone. I cannot begin to describe to you the helplessness of feeling trapped within my own home. Realistically, ending my life was the only option I had.
I had set a date and had a plan. Thankfully, people watching and looking at my situation in detail. They helped to prevent my suicide and I was admitted to Victoria Hospital until full-time, safe, appropriate care that meets my needs and preferences was arranged.
Unfortunately, the SW LHIN with its contracted agencies will not allow this to happen.
While in the hospital, I took my care planning into my own hands. I researched Self-directed Funding and found many viable programs in Ontario. I brought these to the attention of the South West LHIN. I also had to apply through other LHINs for Self-Directed Funding.
Now, the application processes for these programs is very mismanaged and very unfair. I did not get what I needed nor was I provided with a sufficient explanation. I appealed and that appeal was supposed to take two months, it has been nine months and I still have not heard back. I am very organized and I can manage my own care, and I have proven that.
Unfortunately, the system and its bureaucracy is ridiculously complex, and such a difficult maze to navigate. There is no straightforward Self-Directed Funding access for Ontarians nor is there in the rest of Canada.
This is contradictory to what is happening in the rest of the world.
Now, the top Health Care Systems in the world such as the UK, Netherlands, Nordic Countries, Germany, Switzerland, New Zealand, Australia all work on Self-directed funding models for home care.
Internationally, Self-Directed Funding goes by many different terms such as Individualized Funding, Personal Health Budgets, Care Allowances, Citizen-directed Support, Consumer-directed Services, and so forth.
Whatever the term, the definition means the same thing for the individuals who need it. Freedom, Autonomy, and control over their care.
A chance for a quality of life, the right care in the right place at the right time that meets their needs.
No one should have to live in oppression; no one should have to live under the undue influence of an agency that rules in a cruel manner.
Reaffirming this, The United Nations passed the Convention on the Rights of Persons with Disabilities that respects Individual Autonomy, the right to choose, and for those with disabilities to have full citizenship and full rights within their country; To receive the care that they need with dignity and choice, ensuring substantive equality and health equity for all.
I am a proud Canadian and want to live here, but I would move anywhere in the world to get the care that others currently receive.
We have to shift the system towards a person-centered and people-centered approach to truly achieve positive health outcomes, accountability, and value-for-money.
Unfortunately, when organizations violate the rights of vulnerable people there is very little to no justice nor resolution.
I am hoping very much I can survive this battle and not become a casualty of the system. I pray that one day I'll be able return home with the Self-directed funding that meets my needs. Free at home is where I need be so I can be a part of the community again, contribute to philanthropy and our country, to have a quality of life, and a quality of care.
I have a message for those of you who are, and that know someone that is, going through a similar struggle. That message is never give up battling for your freedom and rights. Always know that you can make a difference for yourself and others. Do not take no for an answer. Lastly, always believe the system can change.
I thank you very much.
With lots of love.
Roger Foley.
