The past couple of years have seen a shift in my understanding of the quality of care that is provided for individuals with intellectual disabilities. What I had been told and what I had believed were not the reality of the situation and it has been a soul-searching experience to confront the issues and to take action.
We started experiencing problems in the year 2011 regarding issues of medical and nursing care that was substandard and downright neglectful. I started working my way up the “chain of command” within the intermediate care facility which was just an exercise in frustration that I would learn would only get worse as the years progressed. I didn’t want to make trouble and I didn’t want to have a big investigation done. I just wanted the appropriate medical/nursing care to be provided for my son and others.
After I exhausted all avenues I knew for healthcare I then approached the Human Rights Committee and outline the Resident’s rights and how they had been violated. Again,my concerns were discarded. I approached the advocacy group for the facility and my concerns were not a priority. Their priority was to keep the facility open and any issues that caused concern for care were ignored for fear it would give the “opposition” more fuel for closure.
While I am very concerned about the loss of access to campus based communities and intermediate care facilities, I do not want to compromise on appropriate healthcare that at least meets the minimum standard of care. The care my son was receiving fell far below the minimum and I’m assuming that the healthcare of others was also compromised.
Jumping forward 5 years, the problems became more profound and pervasive. It was at this point that the facility actually “self-reported” to the State Investigative Unit since I had claimed there was neglect on the part of the healthcare team and had become so frustrating trying to work with the “team” – as guardian I was excluded from most meetings and not considered part of the team or someone who needed to be consulted or listened to. Neglect was the key word which was taken seriously. Unfortunately, the actions taken were again just another exercise in frustration.
It was at this point that I actually started to ask questions about what state agency actually licensees and oversees the healthcare clinic. I learned it wasn’t actually a “clinic” but only space that each professional was allowed to use for paperwork. There was no medical director and there was no healthcare oversight. This revelation was a huge problem with access to appropriate healthcare for the residents.
In my audit of my son’s charts I have discovered so many medical and nursing errors in addition to errors in policies and protocols that it is shocking. For instance in the case of 90-day medication reviews there were over 8 medications that were charted as given once or twice a day by the nurse for a period of 1-3 years. They were not given – this was false documentation. These medications were indicated at one time but at a 90 day medication review they should have been looked at and the questions asked if they were still indicated and if not, they should have been discontinued. Instead the nurses just kept signing off they were given – some had never even actually been given at all. As a nurse I find this totally unimaginable.
This is not only a problem with nursing documentation but also with pharmacy reviews and the “team” 90 day medical review. These reviews had been signed off as being done and in some cases a medical doctor wrote “med review – no changes” when there had been significant changes in just the couple of weeks prior to the review. If I had been notified of these reviews or a 90 day medication reconciliation form sent to me, I could have very easily have seen what problems were there. Being left out of the team and not allowed to perform my legal duty as guardian caused many problems.
At this time, until these issues are objectively reviewed by an independent investigator and the problems actually addressed and not swept under the carpet, I cannot support these types of intermediate care facilities. The Federal Regulations need to be followed and the appropriate care provided. I know in the case of my son this was not happening – I hope it’s not the case for everyone.