Thrown Off Balance

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.

 

Who Watches the Watchman?

When allegations are reported and investigated – what happens if the investigators are actually part of the group the allegations are against?  Who provides an independent review of the allegations if the investigative agency can not be objective and actually do a real investigation?

These are questions I have regarding allegations of medical/nursing neglect and abuse  in the treatment of my son at the state operated intermediate care facility where he lived for 5 years.  The agency which does the investigation is the agency which runs the facility.  Unfortunately, even though the allegations are all medical and nursing care issues, the investigator did not have one healthcare provider review the allegations, documents or look into the fact that policies are outdated or do not meet the minimum standard of care.

But these “experts” have decided that the allegations are unfounded based on interviews with agency staff (non-healthcare) and administration.

We hear that the ICF/ID provides “comprehensive care” including healthcare and that there is oversight to ensure the care is being provided. Maybe in doing random surveys and looking at random samples, it may appear that the care is being provided.  Also in those surveys they do not look at the quality of healthcare or if the healthcare meets the community standard of care.  They seem to check that the providers have current licenses to practice their profession.  I think that we all know that having a license is not the same as providing quality care.

In my attempts to have an objective investigation I have contacted several other agencies in the state, including the Department of Health, and have gotten nowhere.  They all point to the Department of Social and Health Services as the agency providing oversight of the care.  Even though the ICF/ID is a medical facility by federal definition, our state defines it as a long term care facility yet the Long Term Care Ombudsman does not consider it a long term care facility and is of no help.

Clearly there are issues of neglect and abuse – any sane person could look at the records and documents and make that conclusion – for some reason though the Department of Social and Health Services and their investigative team has chosen to continue this neglect by failing to see the obvious and make corrections.

The issues fall into various categories of medical malpractice, medical neglect, restraints without consents, multiple injuries including fractures, false documentation of over 8 medications for over 2 years, failure to communicate with guardian regarding psychotropic medication changes, failure to provide prescribed medical treatments and transport to medical treatment center for prescribed treatments, applying splint to wrong foot, applying splint over shoe rather than inside shoe and failure to protect from client-to-client abuse are just a few of the allegations.  Maybe some of the issues actually fall into criminal categories.

Certainly in my mind the lack of ability of the investigators and the DSHS administration to do an objective and fact finding investigation is criminal.

Does one need to file a lawsuit to get anything done about this?