Something is seriously wrong with the system!

Well it seems we have been faced with yet another example of how our home health care system is completely upside down and backwards in providing a service for the population that most needs it.  What profession can refuse to provide a service to a person that relies on that service to survive and live a high quality of life?  That would be one the amazing service providers that our provincial government has granted the contract to.  There are 3 main service providers that have basically been handed a contract to care for our aging and disabled loved ones by our government.  In the past, it was a bidding process so at least there was some accountability by these agencies to provide a high quality of care to their clients but now it is on a "renewal" process.  There is no repercussions if those agencies don't provide the service they have been hired for.  So ridiculous when there is so many private agencies going above and beyond to provide high quality care for their clients yet they will never be given the opportunity to grow their company due to this government policy.  So instead family members are left to pick up the slack and eventually burn themselves out so that they not only physically become exhausted but mentally as well.  Just recently we once again were left without any support due to Shawn encountering a huge setback.  It happened over a week ago, Shawn accidently took a fall out of bed and injured his shoulder.  At first we thought it was just sore but he definitely posed unusual challenges with his transfer so there was some concern with his safety.  So instead of advising us that he would need some reassessment with the OT they decided to refuse service without any notice to us.  It makes perfect sense that they would have concerns and decide that the staff safety and Shawn's safety were at risk but the disgusting thing is that they never let us know.  We had to find out when the staff arrived at the door in the morning and told us the message they received THE NIGHT BEFORE from their supervisor.  So this decision was made a whole night earlier.  Here's the kicker.....they had the nerve to say they were concerned about Shawn's safety but had no concern about refusing care with no options for us so that I would have to unsafely get him out of bed myself since staying in bed and being at risk for skin breakdown hardly seemed like an ideal option.  Luckily for us we were able to pull together enough family and friends to get us through until he could be assessed and a new form of transfer could be applied while his shoulder heeled.  Well guess what, the agency had their staff trained today by 2 Occupational Therapists sent by CCAC to train on the proper technique to hoyer lift transfer until Shawn's strength returned to his shoulder and he could transfer with his pivot disk.  At 3:30pm today the supervisor from the agency left a message nonetheless for the CCAC case manager that their staff once again was no longer allowed to transfer Shawn until they could hear from his doctor.  So you guessed it, there would have been no notice to us for bedtime care if the CCAC did not get that message in time and we would have been stuck again.  There joke of an agency would rather see him transferred to bed by unqualified, non-trained family and friends then utilize their own staff that they sent for training at our home this morning.  However, if I again have to find the silver lining, I spoke at length with CCAC and he stated that maybe it is time to review how these agencies perform and how they must be made accountable to clients and their families.  It is all about policy and covering their own ass that they have lost sight of who they are servicing and not being client-focused at all.

Still waiting for the calm after the storm....

It has been roughly 2 months since we made the "big" move to another city.  You would think once again that it would be a smooth transition based on the fact it is the same province but guess again.  Not only is the home support completely less than we previously were provided but the rehab support as well.  Due to Shawn's complicated and extensive rehab support needs I started the search process about 6 months before our move.  I figured it would be fairly simple to find SLP, OT and PT so I started my search with finding Rehab Support Workers.  I had discussed Shawn's needs with the only real rehab support company in the area and was reassured that they would have the appropriate staff available and the rehab routine would take no delay in transitioning over once we moved.  You can only imagine my relief in knowing that this HUGE part of Shawn's rehab was taken care of.  Well guess what?!  The rehab staff in our new city doesn't provide toileting to their clients.  It is considered a personal support workers job I was told.  So I was very confused because surely Shawn could not be the only client ever needing assistance in this way in this area that was doing rehab in the home.  I never was given a straight forward answer because they said he wasn't but they continued to express that their workers did not provide that level of support.  Needless to say it was yet another blow in what was suppose to be a smooth transition and a better quality of life for not only Shawn but our family.  It has been 2 months and we actively continue to fill the void in his rehab day and just recently we finally look like we may be heading in the right direction.  This may have been a very negative experience for us, however the silver lining is that the rehab support company told me that they realize how they need to reassess their hiring procedures and look for individuals with that specific skill set.  I feel like I am changing the mindset of this industry in this city one step at a time :)

Just moved a few hours not another country

It has been such a long time since I updated my blog but I think the time is right to get back in the saddle and advocate again for not only brain injury survivors but their spouses as well.  Recently we made the decision to move back to my husband's hometown.  It was something we had always planned on but the timing was never right and it seemed it would be now or never.  The overall pros to make the move and the real motivation was the quality of life for us as a family.  The amount of family and friends were the main factor and the only reason we delayed our move was because I wasn't sure what the home healthcare and rehab support would be like in this new city.  Boy was I right in waiting it out until Shawn's rehab was on auto pilot!!!!!!  
We only moved 3 hours, within the same province, but you would think that we moved not only to a new province but a new country.  The treatment we have received since moving here has caused so much stress for us but been completely overwhelming for me as the primary caregiver.  Never in the 5 years since Shawn's accident have I ever felt like my needs and emotional well being was so irrelevant.  You hear all about the push for people in this province to grow old at home and for the disabled to stay at home but they certainly don't make it easy for anyone.  All the services that we had in place for personal care and homemaking are pretty much non existent now.  The most tiniest of tasks is considered a "special function" and either can not be performed or be trained by a supervisor and that does not happen very quickly.  The good old CCAC (Community Care Access Centre) that is responsible for allocating the funding they receive from the government is all about "well why can't you just do that" or "we don't offer that service here in this area".  They withdrew all the hours and care Shawn received and we had to fight and battle to get back what we already had in place and even then we are without ALOT of what we did have.  There is another agency that picks up the slack called Attendant Outreach and when we were referred to that agency we were told that the waitlist is indefinite so they could not give me any idea of how long until we qualify for assistance.  If you ever hear that these agencies care about the senior or disabled or the caregivers of these people they are completely full of crap..... or at least in southeast Ontario they are.  I won't even get into the substandard, impersonal level of care that the personal support company that has been contracted out by CCAC offer.  I will save that mess for my next blog.  I don't expect to change the way things operate here but I will advocate for those that are dealing with it and probably don't even know how good others in the province have it!!!!!!!!