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.

 

 

 

 

 

Olmstead Violation in Washington State

Washington State passed a law in 2011 which prohibits youth 21 and under from accessing needed supports in the ICF/ID.  This law is in direct conflict with Olmstead.  When I brought up the issues of choice with our then Department of Social and Health Services Secretary Susan Dreyfus, she responded “parents still have choice, they can send their child to another state if they want these services.”  Choice obviously means something different to her than it does to me and the many, many families who I come into contact with.

Two prolific researchers and authors on the issue of deinstitutionalization have written  “Almost all the studies cited earlier involved people with lower support needs, but individuals with severe disability likely do poorly given little support.  Where independent living had the best outcomes for those with mild/moderate ID, those with severe/profound disability achieved the poorest outcomes when living independently, and did better in supported living arrangements with more support.  {Gardner and Curran, 2005}.  Jones et al. {2001} found that the increase staff support for participation resulted in greater resident participation in activities.  However, the benefits were greater for individual with more severe disability.  So, while regularly undertaking activities independent of staff support is associated with skill development and achievement of personal outcomes for people with lower support needs, it is not for persons with severe disability, who instead require active support from caregivers for successful participation in meaningful activities.”

This is the problem that we will see more and more of as those who are still in the ICF/ID tend to be those with the highest support needs.  Our community service system is already struggling and breaking with the people they currently are attempting to serve.  It is documented not only here but throughout the ID research that the studies have predominantly been done looking only at those with lower support needs.  The outcome results from these studies cannot be applied to experiments that will be done with the population which has higher support needs.  This train wreck needs to stop before more of our loved ones are injured or killed.

Why, when a youth, age 19, is doing so well in the supportive community is our state denying him services and trying to boot him out to a community which cannot support him and keep him safe?  Makes NO sense at all.

OLMSTEAD V. L. C. (98-536) 527 U.S. 581 (1999), No. 98-536 (Supreme Court of The United States June 22, 1999).

Lakin, K. C., & Stancliffe, R. J. (2007). Residential Supports for Persons with Intellectual and Developmental Disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 151-159.

Where do you fall on this chart?

Okay, I realize this is an over-simplication of how life works but there are many instances in our lives in which we need to make decisions.  Many times we have conflicts within ourselves – maybe some people don’t have these conflicts but I know that I do.  I also know where I stand on this chart on many issues.  I have had to look at this not only in regards to my choices the past few years but also in the choices and actions of others.  Sometimes people surprise me – sometimes I’m very happily surprised and other times, I’m very disappointed since thier actions did not coincide with the opinion that I had about where I thought they would fall.

Anyhow, I’m just putting this out there – where do you fall on this for 2 SSB 5459?  I’d love to hear your thoughts?