Marcy White assumed her situation was unusual when she first began blogging about some of the issues with the home care her son Jacob, a severely disabled teenager, received.
Born with a rare degenerative disease, Jacob requires care from highly skilled attendants. Yet when a caregiver failed to raise the rails on his bed, he fell to the floor. Although Jacob has been tube-fed since birth, a caregiver gave him some of her own food. White found another care provider asleep on the job. She says another didn’t appear to know the difference between milligrams and milliliters.
“I made many complaints,” White says. She went to the Community Care Access Centre (CCAC) that coordinated her son’s care, taking her concerns all the way to the CEO. She did the same with the agency that provided Jacob’s care. She even emailed some of the agency’s board of directors.
“It got me in trouble,” she says. The agency said it could no longer provide care for her son, and Jacob’s care shifted to another agency.
It’s no secret that home care in Canada is stretched, with increasing pressures from earlier discharges, an aging population, patients with serious chronic conditions and others who, thanks to new medical advances and a continued push away from institutional care, are living at home with levels of medical fragility that would not have been seen even a decade ago.
Most people don’t know what to expect from home care, or where to go for information, says Kimberly Fraser, an associate professor in the Faculty of Nursing at the University of Alberta. Her research program, PRIDE in Home Care, focuses on case management, particularly decision-making, resource allocation and related health policy.
“In my research, I found that a lot of families just don’t know what they can ask for. They don’t have a really solid understanding of the kind of limits of home care or what they should expect,” she says.
That includes staffing issues. Home care may be provided by nurses, registered practical nurses – which are both regulated by their licensing body – or personal support workers (known as health care aides or assistants in some parts of Canada), who are unregulated and usually have 16 to 18 weeks of education through a public or private vocational school.
“A lot of care aides and support workers are exceptional and appropriate for the tasks they are assigned, but they’re not a nurse and their skills and behaviours need to be appraised at the level they are at. They bring knowledge and skills, but they’re not well understood or necessarily consistent from region to region,” Fraser says.
Case managers, who assess client need, develop care plans with the client and family, and coordinate care, are often too stretched to provide much orientation to home care, Fraser notes that the number of home care case managers has remained relatively stagnant since 2010, while the number of clients receiving home care has boomed.
“We’re not necessarily keeping pace with the kind of infrastructure that needs to be in place to support home care well,” she says.
That can leave people like White in the dark about where to turn when they have complains about the care they’re receiving, or worse, leave them feeling vulnerable to retribution if they complain.
“A lot of families are afraid to speak up,” White says. “We live on such an edge. We’re so dependent on these nurses in order for our kids to stay at home. You’re very scared to speak up because you’re scared they’ll pull your hours.”
As the system in Ontario undergoes changes to merge CCACs into the Local Health Integration Networks, is it time to revamp its processes?
Home care demand outstripping innovation
One of the biggest factors contributing to dissatisfaction with home care is its design, says Anne Wojtak, the chief performance officer and senior director of Performance Improvement and Outcomes at the Toronto Central Community Care Access Centre. While publicly funded home care was first tried as a pilot nearly 50 years ago, its design has not evolved to reflect the increasingly complex and chronic patients who need care in the home.
Wojtak wrote an article about how to “Uber-ize” the home care system in Healthcare Management Forum, noting that CCACs have been tied to a complex model of procuring care providers that no longer allows them to take advantage of market competition and, worse, has a payment model that incentivizes volume of care rather than quality, cost-effective care.
While there are changes taking place – including some funds that go directly to patients and caregivers, allowing them to manage their own attendants and care – “these small pockets of innovation are not creating change at the pace that is needed,” Wojtak says.
“Home care wasn’t designed to be 24/7 at home,” she adds. “It’s not a substitute for a long-term care home. We have to think about the alternatives to support patients who need that level of care going forward. We don’t have enough assisted housing or other supports available that are somewhere between being at home or being in an institution, so that the client is still able to live in the community, and family and caregivers are not burning out.”
In addition to advocating for better use of technology – to share health histories and help clients better track and manage their care, for example – Wojtak says home care desperately needs a health human resource plan, one that ensures the work force “has stable income from week to week, is sufficiently skilled and trained for the jobs they are expected to do, and is provided with incentives for delivering higher quality care and better health outcomes.”
Managing home care complaints
In Ontario, home care is coordinated through 14 CCACs, which engage a complex web of about 160 different private for-profit or not-for-profit agencies on 260 separate contracts to fulfill their clients’ needs.
If patients or family members are unsatisfied with their care, they’re advised to speak with their care coordinator at the CCAC. If that doesn’t resolve the problem, they can move their complaint up to their coordinator’s manager at the Client Service Centre.
From there, a complaint can be shared with the Long-Term Care Action Line or the Health Services Appeal and Review Board, depending on the nature of the complaint. These are independent bodies who mediate concerns or review complaints about eligibility or types and amounts for home care services.
“Ensuring quality of care is a joint responsibility of the CCAC and the contracted service providers,” Wojtak says,noting that contracts with care providers are clear that it is the service provider’s responsibility to ensure that their staff have up-to-date training and supervisors to monitor the competency of care delivery.
The last resort: the Patient Ombudsman
If all else fails, a complaint can be taken to the patient ombudsman. The position, which was created in June 2016, investigates serious complaints involving hospitals, long-term care facilities and home care in Ontario.
Christine Elliott, Ontario’s patient ombudsman, says her office has received about 1,300 complaints across all sectors since it opened in June, the vast majority of which were resolved with mediation. Elliott says she cannot discuss how many investigations her office has undertaken – or the recommendations they might make to prevent similar complaints in the future – until they’ve completed their annual report to the Ministry of Health and Long-Term Care, which is expected by July at the earliest.
Elliott says it’s common for a complaint to involve the whole gamut of health professionals and settings, including doctors, nurses or personal support workers, at home and in hospitals and long-term care.
“It just shows how intertwined all of these issues are,” Elliott says. A bad experience in hospital can set up an equally dismal experience with home care, particularly where discharge instructions are unclear.
“I think people are finding the system so intricate and complicated that they often do need assistance in understanding where to go to seek help,” she adds. “We’re finding that’s increasingly happening in our office. We are performing that navigator function, even in situations where we don’t have jurisdiction, because we don’t want to leave patients without help.”
Fear of reprisals
Still, some people caring for sick family members fear the repercussions of making a complaint.
“The fear of reprisal is very real,” Elliott says. “That crosses all three sectors that we deal with. People are afraid, particularly in home care and long-term care, that if they raise a complaint, the care of their loved one will suffer.”
“(When making a complaint in the home care system), people should feel just like they do in any other sector of health care such as a hospital or long term care home,” Fraser says, speaking from the experience of both having operated a nursing agency for 25 years in Alberta and having her father receive home care for 22 years in Nova Scotia.
“The piece that’s a little different in the home than in the hospital is that you’re in an intimate space and if you’re not connecting with (the care provider) and you’re going to be in that space for years, that can be problematic,” Fraser says.
“We need to help clients or families feel safe in raising their concerns and this lies mainly in the relationship they have with their case manager and their care provider agency.”
Elliott agrees, saying agencies and others shouldn’t fear criticism, but instead develop a culture that sees complaints as a step to finding improvements.
All CCACs publicly report results of their client experience surveys through Health Quality Ontario. A more standardized reporting system on complaints, as well as more standardized timelines for responding to complaints, is expected to be introduced in the coming months.
“People aren’t looking for money, they’re not looking for a way to get back at CEOs or anything of that nature,” Elliott says. “They just want to make sure that by voicing their concerns to us, we can make recommendations for change that will make the experience better for other people.”
Meanwhile, White and others like her continue to press for a better system – one that can diffuse the perceived risk of making a complaint, and one with the authority to ensure better training and minimum quality standards for the various providers involved with in-home care.
“When one person speaks out or complains, it’s easy for an onlooker to assume that this is an isolated occurrence, the family is too demanding or the stories are exaggerated,” White says. “But when the same experiences occur in homes across the province, it’s time for a thorough investigation, accountability and consequences.”
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I have experienced what CCAC is capable of if you upset them or complain. They use their position to make your life more miserable or what I call “personal politics” and women in general are great at that. They can be real conniving. The client is then labelled “difficult!” The professionals all stick together and everything is dealt with or investigated “ in house”; one big house! They have all the power and can do what they want and they know it. There is no accountability.
Where do I begin. I have been living and caring for a man who is paraplegic for 2 years. 5 Psw’s daily for 2 years. Many complaints have been made by me for rude abusive and absolutely ridiculous behavior in our home. From them coming into our home talking about their other clients to incompetent nurses who never seem to order supplies. With a stage 4 bedsore you would think hygienic nursing practices would be paramount, but no. They rarely disinfect tweezers and scissors and rarely wash their hands or use hand sanitizer when they come in. It has gotten so bad that I have complained many times and now have been forced to sign a document stating I have no say, yet I live here. I have also been warned that if “I” keep causing problems that his service will be cut. Some psw’s have been dumping urine outside my door on my deck! When you complain the psw usually calls the office to say that you did something! What a nightmare! I should write a book.
I have also shown video to the supervisor, yet it always seems to be my fault, most psws and nurses when called out will LIE and say all kinds of crazy things. They Always take their side.
Reprisals are real. Comlained to the Ombudsman and nurses in the hospital started harrassing my husband. He is completly bed bound and they were putting a HEPPA filter machine noisy like a airplane 24×7 to mask the smell of his wounds as they would not change the dressing and let him infect. When manager came to remove the unit , the nurse put it back. Now he was pushed out to home care , services are not delivered as promised with the intend to leave his body decondition, become like a vegetable and force him to a nurcing home to die. My spouse can recover but he was forcefully confined in bed at the hospital. Called the action hotline , we agree with the LHIN and then as soon as the ICF is off , the LHIN staff behaves like we have to agreed to anything , ignores phone calls and bullies , agencies instructed to bully patient….
Our family member (Dad) has advanced dementia and the home where he lives wants us to get on a Long Term Care waiting list. In order to do so, we must work with CCAC. We were told by 4 different people that Dad, who doesn’t have legal capacity (we are Powers of Attorney for him) must have his consent to open a file.
This is beyond something from Kafka! We’ve been supporting our father for years in his disease and now, even when the memory unit he lives in thinks he needs to move to the next level of care, CCAC must first speak to him about his thoughts on the matter? Our Dad still talks about driving his car, though his license was revoked four years ago. Of course, he wants to go home still, though he’s incontinent and can hardly stand. We can’t get anywhere with CCAC and I don’t think they understand dementia.
My son has a lupus disease and us nit getting the himecare need by psw they are to come in tues and fri at 12 to sponge bath him change his pjs and bed we its been a stressful tring to get it two days for 2&1/2 hrs thats it nursing was a problem to come in tues and fri 12;30_3;00 to do woundcare on my son he os bed ridden so i need help im mom age 64 and i cant do it anymore i had a broke neck and arm so its too much i do everything else for my son 2 yrs fight with them to get this in order my son is so stressed he cries he goes inro a deoression wont eat all because lack of caring people un lonson as far as im concerned anyone behind the desk that put us threw this ahould be fired if u cant do the job get out of the job let someine in that cares and will do it for homecare we shouldnt have to load the hospital to get care the people for psw von ccac she make sure homecare is cover when need not wait til they day comes and call or sometime no and call say oh we cant find anyone u know we need someone two days aweek find constancey is inportant to most patients if psw von ccac dont want to come ro people do a job then go find another job they shouldNOT puck who they want or dont want to go to ur a psw von ccac for a reason not to pick easy jobs im feeling thats qhat there doing to me ontario people are LAZY ive seen this not only in nursing im sorey but im frustrated with the service hes getring he or anyone does not ask for this sickness to happen so people need ro get out there and do there job
All of these stories are true!!! I can confirm ,because I work as a PSW certified and previous to this , a HCA schooled properly in the infancy of homecare in Ontario late 1980s.
Homecare has been passed bye by the politicians , they have no idea when they give funding to CCAC, where it is going.
Field staff is not trained extensively and the Nursing profession has washed their hands of training psw or frontline workers , they want to be compensated highly to make homecare workers , registered staff!
It is true , that Case Coridinators want adult children or family members to take role of caregiver. I have witnessed cc say this in care plan meetings .it is shameful!!
I try to do my best , high work ethics and reliability .
The company I work for now , their manager is not a nurse or even have experience in health field . She previously worked with animals . Then she can’t figure out why her staff doesn’t listen to her.
I have walked the strike line in 2013, when psw wanted more pay. We are still under 20/Helton and pay for our own mileage in most cases driving 60 klm to houses to work for1 hr .
It is a train wreck!
CCAC are you really here for our elderly parents because our experience has left a bad taste with us . Our father is completely bedbound, 7 hip surgery’s and recently diagnosed with bone cancer. About a year ago he spent months in the hospital without any type of physio and also declared palliative. He was recently in ER for about a week and because the hospital couldn’t do anything more for him, they wanted us to take him home. We replied not without help. Our hospital socialworker promised several hours per week of home care, palliative doctor, wound care doctor, etc. Once home, We received a call from Our caseworker at CCAC explaining we were getting everything promised and 5 minutes later she called again to say she made a mistake and things were cut drastically. We were in disbelief. Our previous findings with CCAC is that left hand doesn’t know what right hand is doing. We’ve had couple of PSWs being unprofessional and complaining about their hours and being rough with my father, weekends are a nightmare. They somehow always forget about him. Nobody shows up, we don’t even get a phone call. We have to call repeatedly practically begging for someone to come and change his diapers, etc. from the evening before, so I’m forced to call in private sources. I have friends who’s parents, god bless them, are in a better situation than my father, but they get the “ golden elite” CCAC service. I asked them what they had to do to get this special treatment, and answer isn’t anything different than what we did. So please explain to me why?
The government needs to review CCAC, especially since all of us would prefer our elderly parents to stay at home rather than in the hospital. All we ask is for assistance since we can not, afford the luxury of staying at home to take care of our parents.
Years ago I had a good and independent life. Due to many changes in my industry, I found it increasingly difficult to find work. As a temporary measure, I moved in with my elderly father with the intention of regrouping and returning to my own life within a few months. After I moved in, it became apparent, my father had health problems and had neglected his home and business. I discovered he had many financial issues. To save his house and business, I took over both. There is enough money coming in now that my dad can stay in his home but my schedule is very busy and I seldom have time for myself and often work weekends and most evenings. Over the years, my dad’s health deteriorated even more and I reluctantly called the CCAC to provide a personal care worker. They gave my dad one hour per week to shower, brush his teeth and shave. It was very little support but I was happy my dad was getting some help. What I noticed after a few months was that, the personal care workers seemed to follow a script whether it made sense or not. They changed his clothes and bed sheets whether they were soiled or not. They never seemed to pick up his clothes that were strewn on his bed and hang them up. It all came to a head one day when I returned home from work and found a mountain of laundry had built up of mostly clean clothing. As I had no funds to hire outside help, I did the laundry. It was several loads and several days before I finished because running his business had become so hectic. Right now, in addition to running his business, I clean his house, do all the yard work, schedule and drive him to all his doctor’s appointments; arrange all his extra curricular outings and do his grocery shopping. I am exhausted and unhappy. The mountain of laundry was the last straw. I spoke to the CCAC supervisor expecting her to consider my request for help to do laundry or at the minimum to have the workers take a more personalized approach to my dad’s care with regards to his clothing. Instead she was condescending. She refused my request but what bothered me more than anything was the look in her eyes when I approached her. I felt as though she thought I was a spoiled, entitled woman. I resent her treatment of me and believe that my request was denied because I live there. If my dad lived alone, I believe his request for extra support would have been taken more seriously. Bottom line, CCAC are offloading their work to adult children who either live with or near their elderly parents. The elderly person is short-changed and the adult child is treated with ridicule and contempt.
My mother requires PSW services due to mobility issues after having surgery due to a fractured hip and for other medical reasons. It was even confirmed by my mother’s coordinator during her assessment. Unfortunately I was told that there is a wait list and no time line given and they have run out of funds for PSW services. It has been almost 2 months that she has been discharged from hospital and still waiting. The central west CCAC website states, and has been confirmed by their patients relations manager, that as of the end of February 2017 there are more than 900 people on this wait list!! And this number is only for central west CCAC! There is no wait list for nursing or physiotherapy or other services they provide. Apparently the government, since 2013, has increased its investment in home and community care by $250 million a year as I was told by my MPP’s office. I say this is huge mismanagement of funds! Someone needs to be held accountable!
I have had terrible experience with CCAC. My mother is late stage palliative alzheimers. She was in the hospital for four weeks. She is completely bedbound, 88 years old, can’t swallow food very well, needs to be fed. She can’t even hold a spoon or cup, she cannot sit up or turn herself over. She lives alone with my 88 year old father who is in poor health. They tried to throw her out of the hospital as soon as possible. The home care promised is terrible. 3 times this week they never showed up and when they do its 2 or 3 hours later than schedule. CCAC had my mother as low needs priority. She is very high needs. The government needs to review CCAC, get rid of some of their non compassionate staff. Too many nurses caring clip boards that just want to boot people out of hospitals and nurses that say they don’t want to be nurses because it’s easier to work for CCAC and just do computer reports from 830 to 430,
Complaints, well founded or not, must be heard. They construe a vital component of the ‘feed-back’ loop that should serve in every occupation, including healthcare, to drive higher quality service, outcomes, and productivity. One of the many problems with home and community care is that it constitutes one of healthcare’s several ‘silos’ thatare centred around the well being of the silo, not necessarily the people it is to serve. Ontario’s transfer of the CCACs to the LHINs may well make matters worse; the LHINs were set up as regional governance organizations and have no experience or expertise with service operations, including dealing with complaints. Sadly, that horse has fled the barn already but home care should have been put together with primary care teams, the logical ‘connectors’ of those silos with the patients and families who need their services. A long sigh here for an opportunity lost.