Healthcare at the Intermediate Care Facility

Who oversees the healthcare at the intermediate care facility for those with intellectual disabilities (ICF/ID)?  If you have a loved one who lives in an ICF/ID it may be worth looking into this to ensure that the healthcare actually does at least meet the minimum standard of care.

This was not the case in the ICF/ID that my son lived in.  I first started noticing problems the first year he lived there and I tried to work with the team and work within the system to improve the care, provide education and collaboration.  As system after system broke down and my son’s health grew worse I was making more and more trips to his home to provide the care and treatments that were supposed to have been provided by the nurses and team at the ICF/ID.

I knew the medications were not being applied but since the nurses were charting as given that was proof that the medications were being applied as prescribed. The fact that my son was not responding indicated that more potent medications were needed in addition to other medical treatments to control his inflammation.  These other treatments are not without risk and actually do increase his risk of cancer but we needed to get the inflammation under control and his immune system stabilized.

I was visiting at least 4 times a week and would apply his topical medications when I visited – knowing that he would at least be getting them when I was there.  They were actually supposed to be applied twice a day  and were charted as being applied twice a day but that is not what was happening.

After we moved our son to supported living and his care staff  applied the prescribed medications as ordered his inflammation quickly was controlled.  In about one month’s time the inflammation that had been extremely problematic for 3 1/2 years was now in total control.  His lab work was essentially normal after 3 1/2 years of having hematological problems. The medications actually did work – they were just not being administered as prescribed.

Now that I have the actual pharmacy and nursing records to review, I have found 9 medications that were falsely documented as being given for 1-3 years.  As a nurse I am totally appalled at the lack of quality and integrity that was accepted and not even questioned and do not understand how these dramatic errors can go unnoticed and uncorrected.

Below are charts of 5 of the medications showing the dates of administration, the amounts the pharmacy (at the ICF/ID) dispensed and the amounts that were charted as given. The compliance rates are unbelievable!  Who would accept these rates as meeting any type of standard of care? Why is this acceptable at the ICF/ID?


It’s not just nursing that was the problem.  There was to be a 90-day medication review or reconciliation.  The purpose of this is to check each medication and ensure it is still needed and is indicated and the correct dose is prescribed.  Obviously the medication reviews were not done (but were signed off as being done)  since 3 of these medications were only needed for a short time (1 month or less) but remained in my son’s active  medication profile for up to 3 years dispensed and signed off as administered.   Who really knows what was given and what was just charted on as given.

How is one supposed to know if a medication is working or not when there is this type of record keeping?

There are so many problems that can be identified just with these medication errors.  This is at a state operated facility and so far the state investigation has stated that the allegations are unfounded based on the fact that the nurses charted the medications as given as ordered.

The state agency that oversees this facility is the Department of Social and Health Services.  Unfortunately, complaints to the Medical Quality Assurance, Nursing Quality Assurance, Department  of Health, Pharmacy Quality Assurance are unable to provide any guidance since they do not oversee any of the services at the ICF/ID.  It is up to DSHS and they do not see any problems.

Residential Care Services has opened up another investigation to review these issues and other allegations healthcare abuse and neglect.  My hope is that this time they will be able to see the problems and work on a plan for correction so that the residents do indeed have healthcare that at least meets the minimum community standard of care.  Currently that is not happening.




Paid to not think

One hot day I visited my son at his home at the state operated intermediate care facility where he lived.  There was a portable oscillating fan going in the living room.   I was glad to see that they had provided some sense of cooling to the room.

As my son made his way over to the fan I knew he would try to touch it as this would be typical behavior for him but I wasn’t concerned since fans have covers on them which prevent him from putting his fingers into it.   As he stuck his finger into it and the blades stopped and he pulled his finger out yelping, I suddenly realized that this fan had no front screen protector on it.  I could not believe that the staff would put such a fan right out in the open.

The two direct care staff were right there and when questioned, they stated they knew there was not a cover but they had asked the charge about it and there was not another fan to use.  I then left to go ask the charge myself about the fan.  The charge staff just shrugged his shoulders and said there had been a cover yesterday.

At that time I saw another fan that was not being used and asked the charge if I could take that one to use.  He was non-committal and totally unconcerned and was not going to do anything.  Since he wasn’t going to give an answer I asked what I could do and he told me I could go to the duty office.  So now I went to the duty office to inquire about a fan.

At least the person in the duty office had an answer – that unused fan belonged to someone else and I couldn’t just take it to use in my son’s home. That was an answer that I could work around but what I couldn’t grasp was the total lack of concern of common sense on the part of the direct care staff or the charge person for the unit.

When I brought this safety concern to the attention of administration I was told that the staff are not trained to think – they are only to take orders and they fear that if they make any deviation from that order they will be reprimanded.  This answer also made sense and was obviously correct from my observations of what had occurred but was far from reassuring that these direct care staff were in charge of the care of my son and his housemates.  .

I thought of this situation yesterday after I had a meeting with the new Clinical Director of the Outpatient Specialty Healthcare Clinic I work at. He referred to the book by David Marquet Turn the Ship Around .  As I was listening to the talk and watching the video I realized that part of the problem in the state operated Intermediate Care Facility was the fact that the direct care staff are paid to not think.  They have no ownership, do not feel valued and are uninspired by their lack of decision making power.

This total lack of accountability is something that I have now witnessed from the bottom ranks of the organization to the top of the state operated intermediate facility and the agency that licenses it.   While I fully believe we need to have the continuum of care I am angry at the lack of accountability and the fact that when issues of concern are brought to attention they are covered up rather than dealt with.

We are entrusting the care of our loved ones to a work force that is not allowed to think. This scares me and is great concern and I can’t keep quiet about it. While I understand that a state operated facility works withing the government and change may be hard, change is not impossible.

Denial is a powerful tool.






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.


Supported Living Crisis

It is absolutely necessary that we provide funding to support our direct care providers in the community settings.  We have been in a crisis situation and it is only getting worse.  It is time to step up and provide the support that we all say is needed but do not provide the funding to back the words up.

Please read the position paper Underfunding of Community Residential Services by the Community Residential Services Association.  While I do not have all the cost reports of the community service providers nor the cost reports of the state funded services to compare the cost of care, I do know that the cost of direct care for those with high support needs is about equal across the board.

It is the costs of all the other services that add up and can make one type of residential setting appear more costly than another.  It also depends on what is included in the cost reports.  I believe there is cost shifting and capital costs which may not be reflected but, again, I do not know for sure since the data is extremely difficult to sift through.  It is something to take into consideration.

Regardless of the cost issue there are other major concerns that need to be factored in. Personal Choice of residential setting, access to quality health care, continued learning opportunities, employment and meaningful life activities all need to be included in the big equation.

There is not one type of residential setting that guarantees that all these aspects of life will be met or even considered but I do believe that living close to family, friends and natural supports does increase the chance that the person will have a meaningful life that is fully integrated into community.




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?



What do gardens have to do with oversight?

I love to garden and share that love with others. This is a joy that I share with my son. When he was younger and lived at home he would follow me around the yard and loved to rub his hands on the various herbs and then smell his hands.  He learned what they all were and where they were in the garden.

We currently have a plot in a community pea-patch and one of his favorite activities is sitting in the garden having a snack talking about the various plants we are growing and checking on his flowers.  Tonight we picked some of his huge sunflowers and will save the seeds for bird food in the winter.IMG_1919

Gardening, harvesting, and composting are great activities for people.  Learning skills in these areas can provide not only vocational skills but life skills, recreational skills and exercise to those with intellectual disabilities.

For a few years we had wonderful gardens growing at Fircrest.  Residents were planning meals, harvesting, preparing and sharing.  We were also learning worm composting and one resident even started selling the worms to a local garden store.  This was part of the “Active Treatment” at Fircrest and was set to expand.

With a recent survey that targeted the lack of “active treatment” and the promises of administration stating that the job training program was going to expand brought hope. The new emphasis on active treatment was promising and the news that tomato plants had arrived last April was a step in the right direction.

The hope has been shattered by the reality of the deserted and abandoned garden beds, the empty greenhouses with dead plants and the worm bins that have become garbage cans.  I have even offered several times to continue volunteering to help teach staff how to teach residents or work with residents myself but am ignored and told they are working on expanding.  From the outside it appears that things are getting worse, not better.

This is where oversight comes in.  We are told over and over that there is great oversight at the intermediate care facilities.  But oversight by who and oversight of what?

I believe that oversight should not be left  just to the state agencies but is up to each of us to keep an eye open and ask questions.  For instance, why are these garden beds abandoned and why are the few plants in the greenhouses dead?

I have asked and have offered to volunteer on campus or find a new home for the greenhouses and worm bins so that they can be used by others.  I dream of developing a learning garden in the area for people with intellectual disabilities and these would be prefect.  The answer I got was that they are not for sale and they will not lease the area to others to use.

Please look at the link  Active treatment and gardening at Fircrest.  If you have any suggestions for improvements, please let me know.  This was such a great boost for the residents and it makes me so sad to see it going to waste.

Please share this information and maybe there is some vocational training group or agency that can make something happen so that the time, talents and goods are used to their potential.



Congregate is not the same as segregate

I am very disappointed with the Joint Position Statement published June 23, 2016 by The American Association on Intellectual and Developmental Disabilities (AAIDD) Association of University Centers on Disabilities (AUCD).

While there is quite a bit of quality information in this statement it is obviously clear that these organizations also have a strong bias against choice of residential settings.  It is unfortunate that these organizations do not understand that congregate care is not the same as segregated care.

“Everyone with an intellectual or developmental disability deserves to live in the community where they have the opportunity to experience vibrant lives that include work, friends, family, and high expectations for community contributions.”  These goals can and are also accomplished in congregate and campus type communities.

Many states have built systems that utilize group homes as a key way to support people in the community. When people find themselves in a situation where they need to live outside of their family home, they are often placed in an “open bed” versus being offered person-centered supports designed specifically to meet their needs. In many of these situations, people remain as isolated in these settings as they do in a large-scale institution. A process for creating and sustaining supports that make their living situation a home in a neighborhood is needed.

It is clear from the above statements that these organizations realize there is a problem with the funding and system that many supports are built around.

Yet AAIDD and AUCD are doing exactly what they chastise others for doing – categorically denying the individual the personal choice for individualized care in the residential setting they choose.  The setting is not what necessarily causes the segregation – separation from familiy, friends and community causes segregation.  Unfortunately that segregation can happen in any residential setting.

It is the segregation that needs to be called out – not the setting.