wait, what?

My husband has secondary progressive MS and receives government funded homecare.  The Ontario government pays HCCSS to oversee home care in Ontario, and then HCCSS contracts out the work to local agencies.  In our case, St Elizz has the bulk of the contract for Bob's PSW care.

We were assessed for 7 hours a week - which means once a day a PSW comes in to get him up, give him a shower, dress him, and helps him prepare for his day.  We have all the toys - hospital bed, a lift, a commode, a safety belt, power chair, ramps, roll in shower - everything anyone needs to take care of my husband.

Over the last five years, care has declined.  I've estimated that we "miss a visit" roughtly 6 times a month, which is more than once a week.  It's roughly 20% of our visits, overall.  Generally speaking, we miss visits when our main guy is off - sick, vacation, whatever.  This is because local agencies don't get a sick call and re-distribute patient care.  They get a sick call and "post patients to the board" meaning that PSWs can look, see who needs care, and either "pick them up" or not.  

An important side note here is that PSWs get paid for one hour no matter if the care takes 3 minutes or 57 minutes.

So it shouldn't be a huge shock to learn that my husband is hardly ever "picked up".  We complained, especially after a former PSW dropped us so that he could rush through and finish 12-15 patients in 5 or 6 hours (he told us) and his manager suggested that they knew and were "making accomodations" for him.  We then had to "prove" our house was safe, and did so, and months later are still waiting for more than one PSW to "take us on" despite both HCCSS and St Elizz receiving the funding to do so.

Frustrated, I wrote our MPP and Health Minister.  Our Health Minister wrote back to say that," neither the minister nor the ministry can intervene in Home and Community Care Support Services’ processes".  Wow. She went on to say that, "Home and Community Care Support Services organizations hold the contracts with service provider organizations and are responsible for procuring new home care service providers when there are local performance concerns or service capacity is insufficient to meet demand." and "The ministry is not a party to these contractual relationships, nor is the ministry involved in making provider selections during Home and Community Care Support Services organizations’ procurement processes."  Again, Wow.

Essentially, our government, and our tax payer money that goes to provide government-funded home care is not accountable money.  They do not get involved in the process.  Is that literally not their entire mandate?  To properly fund and manage healthcare?

I don't know what to do in a system that is this broken.  My husband is 52 and misses 20% of his care due to mismanagement - a "take what patient you want" scheduling style with no accountability to HCCSS.  Apparently, they have "no other staff" that can see my husband, unless we're willing to take their afternoon guy who gets Bob out of bed at noon, or someone from Scarborough who gets Bob up around 12:30 p.m.  

Recently, I was told that "they don't have enough PSWs to service you" so I asked if that meant St Elizz was no longer allowed to take clients in Clarington, Ontario, where we live.  They clarified, "well your location specifically."  My location?  By car I am 3 minutes away from Harmony/Taunton in Oshawa, 8 minutes to Courtice Road and Highway 2, 15 minutes to downtown Bowmanville, and 18 minutes to central Whitby.  I am not on another planet - I'm in Clarington, Ontario.  

There are other solutions.  I can pay for my own PSW care for my husband - at $42/hour at a 3 hour minimum each day.  That's $882/week.  What the biggest kick of that is - is that if we were willing to do that, St Elizz would have a PSW for us.  But their goverment services and paid-for services are separate, I hear.  Same company though.

Here's how I define the problem:

• no accountability - from st elizz to the HCCSS and from HCCSS to the goverment.  not one person is accountable.
• poor scheduling - there should be some sort of triage approach to scheduling and not a "here's who is not getting care - wanna help?" sort of email.
• horrible employment practices - there would be ample PSWs if the position paid a liveable wage, and their PSWs did not have to rush to take on more clients to make it liveable.  They should have regular clients, make their own schedules, and get paid properly.   

If we built some accountability between the goverment, HCCSS, and the contractors; scheduled based on triage, and paid folks properly - most of the issues with home care would solve themselves.

I'm tired of hearing "there's nothing we can do".  There's quite a lot you can do - you just have to summon the will to do it.