Stuck in the Hospital – Seclusion violations

PeaceHealth St. Joseph Medical Center, Bellingham, Washington

Bed for restraining psychiatric patiens

Our Developmental Disability Services are failing us.  As more and more people are being left at hospitals with no place else to go, one hospital has violated patient rights by using restraints and seclusion and not practicing up to the standard of care.

This needs to be corrected and other hospitals should take note that this harmful treatment can cause physical and emotional harm and deterioration to these individuals.

MEDICARE COMPLAINT INVESTIGATION

The Washington State Department of Health in accordance with Medicare Conditions of Participation set forth in 42 CFR 482 for Hospitals, found St. Joseph Hospital (PeaceHealth in Bellingham, Washington) NOT IN COMPLIANCE with the following conditions:

 

42 CFR 482.13 (e)(4)(i)  – Patient Rights:  Restraint or Seclusion

The use of restraint or seclusion must be in accordance with a written modification to the patient’s plan of care.

  • Failure to create or modify a plan of care for a patient placed in seclusion could lead to physical deterioration and delay in obtaining appropriate treatments

42 CFR 482.13 (e)(9) –  Patient Rights:  Restraint or Seclusion

Restraint must be discontinued at the earliest possible time regardless of the length of time identified on the order

  • Failure to remove a patient from seclusion after staff observed him to be re-directable  or without significant disruptive behavior, can lead to physical and emotional harm to the patient

 

wrist restraint is applied and locked to a wrist

 

42 CFR 482.13 (e)(12) – Patient Rights – Restraint or Seclusion

When restraint or seclusion is used for the management of violent or self-destructive behavior that jeopardizes the immediate physical safety of the patient, a staff member, or others, the patient must be seen face-to-face within 1 hour after the initiation of the intervention – by a 1. Physician or other licensed independent practitioner, or 2, Registered nurse or physician assistant who has been trained in accordance with the requirement specified in paragraph (f) of this section.

  • Failure to perform or document a one-hour post application evaluation on a patient during use of physical restraints or seclusion for violent behavior can lead to possible abuse, assault, and self-injury or poor patient outcome.

solitary confinement.jpeg

42 CFR 482.55(a)(3) – Emergency Services Policies 

The policies and procedures governing medical care provided in the emergency service or department are established by and are a continuing responsibility of the medical staff.

  • Failure to perform a complete initial assessment can lead to obtaining inaccurate patient information resulting in an ineffective plan of care, treatment or services.

STATE COMPLAINT INVESTIGATION

The Washington State Department of Health in accordance with Washington Administrative Code (WAC), Chapter 246-320 Hospital Licensing, conducted this complaint investigation and violations were found pertinent to this complaint.

WAC 246-320-226 (3)(f) Patient Care Services – Restraints/Seclusion

  • The Washington Administrative Code was not met as evidenced by the fact the hospital failed to ensure staff performed and documented on-hour face-to-face evaluation after initiation of restraint or seclusion for patients exhibiting violent behavior, as observed in 3 out of 7 patient records reviewed.
  • Seclusion was used preemptively and failed to remove patient from seclusion after staff observed him to be re-directable or without significant disruptive behavior.  This can lead to physical and emotional harm to the patient.
  • Failure to initiate or modify a plan of care for a patient placed in seclusion could lead to physical deterioration and delay in obtaining appropriate treatments.

WAC 246-320-281 (4) Emergency Services – Standard of Care. 

If providing emergency services, hospitals must use hospital policies and procedures which define standards of care.

Failure to perform a complete initial assessment can lead to obtaining inaccurate patient information resulting in an ineffective plan of care, treatment or services.

#waleg #disabilities @DdOmbuds  @SFrameK5

St. Joseph Hospital Medicare and State Complaint Investigation regarding Patient Restraint, Seclusion, Emergency Services 2019

Employment Supports – who pays?

We are all in agreement that people deserve to earn a fair wage – that is not in question.

Forget Me Not

Forget-me-not when making decisions about ME

 

When we are working with a population of people with significant intellectual/developmental disabilities who may often have additional mental/medical/physical/behavior disabilities we are talking about a very complex situation.  Our goals are to encourage as much independence and integration as possible and we realize that this most often includes personal supports to be in place.

For services and supports that are to be driven by person-centered planning and thinking with personal choice, most often this population has no choice or the choices are made by those who have no idea what the collateral damage of their decisions will be on those they are making the choices for.  Choices which are said to “improve the quality of life” – without asking and working with those actually involved – how are these so-called choices proven to improve the quality of life of those affected?

One very recent issue is the closure of pre-vocational training jobs and facilities.  Many people worked at these sites by CHOICE but that has been taken away because everyone deserves minimum wage.  That’s fine – but in order to do the work to earn minimum wage, many of these people need paid supports in order to find and keep a job.

The issue is not only what the employer will pay the employee but who will pay for the support needed so the employee is able to work?  We need to address this issue.

Currently the wage to a job vendor (in King County, Washington) is $73.00/hour whether an individual is receiving supports to find a job, or receiving job coaching to maintain a job.  The counties authorize a certain number of hours for each person within employment services.  There is a cap of $3,600 payment to a vendor per month (approximately 50 hours of employment for the employee who makes about minimum wage if they are actually employed.)

When the choice of pre-vocational training jobs was eliminated, most have been left with scraps.

King County PVS clients 2019

Pre-Vocational Training – clients spent an average of 58.4 hours a month on-site – time that was both work/therapy/socialization.  Clients worked an average of 43.9 hours a month of that 58.4 hour average. .  This means that all people in the pre-vocational services had an average weekly engagement of 14-15 hours.

Fast Forward to the collateral damage of the current situation due to their choice taken away –

Community Inclusion – 45 people – average of 9 hours a month (decrease of 49 hours of engagement)

Employment Services – Total 62 people –

  • 23 people are actually “employed” working an average of 8.75 hours a week (decrease of 49 hours of engagement a month)
  • Employment rate of 37% (depends on how this is figured – could be 25%,  37% or 58% – I believe the correct percentage is 37% based off of how many are in the employment service and how many actually have a job)
  • 39 people have no employment – ZERO hours of engagement

King County Previous PVS clients

 

The Take Away –

  • who is paying for the authorized funds for support?  How much and for what supports and services?  For those with NO employment are the vendors still being paid for supports?
  • We went from a high employment and engagement rate for this population to an extremely low employment and engagement rate.  What was the cost?  Not just in dollars but in meaningful life experiences.
  • Do these people feel more integrated and engaged and feel their life has more meaning than before this choice was taken away?

It behooves us to look at this and understand the collateral damage.

We believe in choice and wise use of the meager resources we have in methods that will best serve the most people.

Encourage your legislators to address the JLARC report and issues regarding person-centered planning and choice, quality of life for both the individual and their supports -we do not live and work in isolation.

 

A Hospital is not a Home

Disability Rights Washington and Shawn Murinko have filed suit against the Department of Social and Health Services and the Health Care Authority as an effort to prevent other developmentally disabled Washingtonians from getting stuck in hospitals for months or years at a time, instead of receiving supportive services in the community.
There is one very critical piece of information missing from this article and the suit (unless it is buried in something that I have not been able to see) and that is the option of utilizing the state-operated Residential Habilitation Centers (RHCs) as an intermediate care facility for those who do not need the acute medical care provided in the hospital.
DDA denies admission, even short term, crisis respite, to many who request this service.  DRW and other paid advocacy agencies deny the choices of those who desire these types of pedestrian-friendly communities – often referring to them as institutions and unaware of the true communities and choices provided to the residents who call the RHCs their homes.
In recent years there has been more of a push to look at the RHCs as temporary (intermediate) homes for those who need extra supports than can be provided in a community home (SOLA, Supported Living, group home or family home) but DDA continues to refuse to honor person-centered planning for those who choose the RHC.
This refusal to allow people who request admission to the RHC is even more puzzling given the extreme crisis we have in our community homes.   In the past couple of years, at least 2 contracted supported living agencies lost their contracts (SL Start and Aacres Spokane) due to negligence and death of at least 2 residents.  These agencies provided “support” services to over 200 people.
Another recent situation concerned Kevin Alspaugh.   Kevin is 27 years old and is autistic.  He had lived at Fircrest (an RHC in Shoreline) for several years about 4 years ago.  He stabilized and returned to his home community in Bellingham and did great in a group home for the past 4 years.  Kevin then had some issues related to medication changes and became extremely agitated and his group home dropped him off at St. Joseph’s Hospital in Bellingham and refused to provide care any longer.  Keven basically lived in the SECU (Secure Emergency Care Unit) for months in isolation because DDA would not honor his family’s multiple requests to have him return to Fircrest for stabilization.
At one point, the hospital let Kevin leave, barefoot and in scrubs, and did not notify his family (mother is guardian).  Kevin ran over 2 miles at rush hour and across extremely busy arterials and found his way back to his group home.  When he arrived there, the manager called Kevin’s mother to notify her.  Kevin had bloody blisters on his feet and was lucky that he did not get hit by a car.  The police came and returned him to the hospital and the hospital requested that he be taken to jail – they did not want to care for him.  They told Kevin’s mother (guardian) that he has discharged himself.
Currently,  Miriam Hamilton (age 19) is living in the ER in Spokane and has been there since Memorial day with no end in sight.  Her group home refuses to take her back.  There is another 16 year old at Seattle Children’s who is living in the ER/Psych unit off and on for months unable to be discharged home  – every attempt at discharge in the past several months has ended in an ambulance ride back to Children’s within a few minutes to hours.   There is an 18-year-old young man “living” at Harrison Hospital in Bremerton.
I’m sure there are many others too.  Hopefully, DDA is at least tracking those in the hospitals now but the fact that we have space and trained providers at state facilities that could appropriately care for these individuals without restraining or isolating them is unconscionable.
It’s more than shameful that DRW and other paid advocacy agencies are not addressing this issue – they seem to be more concerned about their political issues and denying the choices of people than actually trying to create solutions.
I would be more than glad to have a conversation with you or provide you with more information on this very complex situation and also provide information on viable options and choices that could provide stability for these individuals.
We can do much better.

Evaluate the damage first

In King County, Washington State and across the nation service and employment options for people with significant disabilities are being taken away.  Washington State decided to begin the phase out of pre-vocational services and transition participants into employment or community inclusion services in 2015.  The process was completed by January 2019 in King County.

Gold Guy Kicked Out

Important Definition to understand and remember when reading any data regarding “EMPLOYMENT” in Washington State when connected to people with Intellectual and Developmental Disabilities;

EMPLOYMENT –  gross wages are anything greater than ZERO during the previous 3 month time period.

 

We ask that the JLARC report be addressed and an evaluation of the damage done be completed prior to any more transitions and forced choices be made for this population.

Despite it being an objective of Developmental Disability Administration that DDA services provide quality of life benefits for clients, such as choice, relationships, integration in the community, and competence, there is no tool to measure this and so, unfortunately, we are unaware if the person’s choice was honored or if the changes have affected their quality of life.

This is what has happened in King County –  there were 143 people in pre-vocational services prior to denial of services.  These people were employed and working an average of 14.6 hours a week – some of this time was paid and some was not paid since other activities also took place on site.

AS of May 2019, here is the breakdown of what these 143 people are doing and what services they are provided:

37  – people do not have any services or open contracts – this could be for a variety of reasons – at any rate, they are not receiving employment or community inclusion supports

62 people are authorized for employment support – only 24 of these people are actually employed though

Employment rate of 39% – working an average of 6 hours a week 

44 people are authorized for community inclusion

Community Inclusion – 4 hours a week of community activities

Due to the forced choice and transition, people in this population went from an employment rate of  99%  to about 17% employment.  This is how Employment First works in Washington State.

2015 – 143 people employed in PVS  with 99% employment rate

2019 –   of those 143 people in 2015 only 24 are “Employed”  – this is an employment rate of 17%

  • Authorized does not mean the person is actually receiving any services or supports. It just means that they are authorized to receive those services/supports if they are available.

 

  • Employment First in WA means that one MUST utilize employment services for at least 9 months prior to Community Access services – these cannot be provided concurrently. There is a special waiver for a select few who may not need to “participate” in employment services for 9 months prior to Community Access services but this is very rare.

 

  •  For Individual Employment, support hours up to 26/month are paid at $73.00/hour, above 26/month are paid at $30/hour and the total fee is adjusted up to a maximum payment of $2,700/month – this cap will be increasing though.

Information provided by King County Developmental Disabilities Administration and State Data

Time to get back to work!

Now is the time to start planning for the upcoming legislative session.  As a community member, it is very, very difficult to be aware of these planning meetings in which paid advocates come up with their annual agenda.  Typically, the issues are not shared or discussed with the community and public until it’s a done deal.

This year, I contacted the King County Developmental Disabilities Administration regarding the legislative committee and planning sessions.  For some reason, the meeting dates and participants were not being shared on the website.  After my inquiry, I have received the information that I requested and an invite to the upcoming meetings.

I greatly appreciate the opportunity to participate in these planning meetings. With that being said, I am also disturbed by the gas-lighting that occurred at the meeting.

The issues that I raised at the meeting was the fact that in Washington State (an Employment First state) which means that a person age 21 or older with intellectual/developmental disabilities MUST try employment services first for 9 months before accessing community inclusion services under “Employment and Day Programs”  within DDA.

In addition, a person utilizing the employment supports (regardless if they are actually working at all or have minimal hours (5 or less a week) they are restricted from accessing community inclusion.  These two supports are mutually exclusive.

Many times these people have no community engagement or opportunities for meaningful interactions during this first 9 months or afterwards.  When these people are left without active supports, they lose skills and become more isolated and we believe that these supports should be able to be accessed concurrently (as many other states offer them.)

There were several representatives from The Arc of King County (paid advocates) at the meeting in addition to representatives from the state DDA, King County DD Admin, and representatives from other agencies which serve people with IDD.

The Arc of King County Director of Advocacy and the Arc of King County Family Engagement Coordinator both spoke up and stated that I was wrong in my statement that people receiving employment supports were not able to also access community inclusion.  I questioned when that change had been made and I was told that it was made several years ago and was in the waivers.

Being “corrected” by these paid advocates and “experts” at this public meeting was really a slap in the face.  They provided false information with their attempts to discredit what I was advocating for.

I followed up with emails to both of these people and to the King County Administrator who was running the meeting.  When questioned and asked for resources to back up their comments, both of these people wrote back to me that I was CORRECT in what I had said at the meeting.

What was the purpose of them speaking out against my comment?  What was the reason that they provided false information to those in the legislative planning meeting?

Employment Programs – DDA Fact Sheet 2019

Community Inclusion – DDA Fact Sheet 2019

 

 

Show me the Evidence

It’s been a grueling couple of weeks with two court cases to prepare for regarding issues that stemmed from being an advocate.  When I first began being public with advocacy I never knew how political or nasty some of the situations could get.  From my perspective and those I work closely with or those who know me and my son, it all seems so common sense.  Well, that’s not the case and it leads to so much frustration, misunderstanding and worse – harassment and libel.

I represented myself in court as the petitioner, the respondent hired a lawyer and of course that did put me at a disadvantage but I believed that the truth would prevail and if the Judge read the law correctly, it would be clear that I had been the victim of harassment.  In actuality, I am also the victim of libel and slander and the judge did mention several times that I should hire a lawyer and file a case for libel/slander.  At this point I am not going to follow the judges recommendations since I was granted the anti-harassment protection order and if the respondent is not able to adhere to this order there will be criminal charges filed.  My hope is that the respondent will stop the behavior that caused this situation and move on.

What is really strange is that we really do agree on many things but this person would never know that because from the very first interaction with me they had false and preconceived impression of who I am and what I believe in.  The fact that the only in-person conversation I had with this person, they started out by saying “you’re abusive” and quickly escalated to them swearing at me and storming away.  (At that time the person was a Co-Chair of a City of Seattle Commission and a public representative for Seattle)

As with every experience that I have, I learn a lot, I make mistakes and I learn from those mistakes too.

There were a couple of funny things –

I provided a letter that the respondent had written to my employer  (I work as a RN and the respondent has never been a patient of mine nor do I have any interaction with them in the healthcare arena).  The letter was filled with fabrications twisting shreds of truth into fantasy events and outright libel.  The respondent’s lawyer agreed to submission of the letter and stated “and we not only submit it but we ENDORSE it”

Later, the lawyer referred to that very same document as “hearsay”  The judge did call her out on that saying “the respondent wrote this letter – you endorsed it, it’s not hearsay”

The Judge sent the respondent’s lawyer and me into a meeting room in hopes of coming to an agreement so that the protection order would not have to be filed.   The lawyer was clearly irritated with me from the very beginning with an attitude of superiority and smugness – I did not agree to the offer they put before me and in trying to explain why to the lawyer, she threw her hands up and stormed out of the room and said “well I’ll just tell the judge you can’t agree to anything”  OKAY –

Back to the courtroom – as it turns out their offer was for me to basically stop advocating for my son and others, have no contact with The Arc of King County or attend any of their events (this is where the respondent works) – Of course I would refuse – this would make it virtually impossible to continue to advocate for those I work with.  I’m already banished from the Parent to Parent support groups moderated by The Arc of King County due to issues caused by me calling out behaviors of the respondent. The judge did agree and stated that he would never sign an agreement that would take away the right of free speech.

So with that – we went to a real hearing and I prevailed and left the court with my anti-harassment protection order signed and in place.  Perseverance can pay off but I’m ready to be done with this and move on to much more positive work in family advocacy.  We have a long way to go.

A couple more sidebars to this case:

  1. The Respondent provided declarations from at least 4 people they have worked with in regards to advocacy.   None of these declarations dealt with the issue before the judge but all expressed what a terrific person the respondent was and how devoted they are to the cause (This was never a contested issue – in fact, I agreed with much of what the people who wrote declarations wrote.)  The fact remains though that just because a person works hard and gets along with those who totally agree or cater to them, does not mean that the person does not harass others – that is what the case was about so these declarations were totally useless with regards to the facts of the case before the judge.
  2. When the judge stated that he was going to sign the order, the respondent’s lawyer stood up and requested that the judge sign an order of protection for the respondent also.   The judge said “No, it doesn’t work that way”  The respondent filed a petition last year, it was denied, this order is due to the escalation of harassment the respondent has caused since their order was denied”
  3. One of the declarations was written by a person I have never met  (Brian Dahl) I know the name and apparently he was at some Self Advocates In Leadership meeting that I took my son to.  This is what he wrote about my “behavior” at the meeting:

“She, with her son, attended a monthly meeting of this group about a year ago.  I was also in attendance.  Her presence was slightly disrupting but not enough to stop the meeting.  She did nothing to engage in a productive dialogue when she was there and she left early”

Interesting viewpoint of my actions there – what this person does not know is that I was working extremely hard to keep my son from being extremely disrupting to the meeting.  I was not there for me to participate but for my son to try to participate.  We left early because my son was getting more and more agitated and I was trying to avoid a fiasco from happening.    I really wish we could have stayed because after we left there was an issue that my son does have an opinion on and he was not able to stay to address that issue.

I find it extremely telling of this response from Brian Dahl that there is so little understanding of working with those who need extensive supports – both physically and behaviorally to participate in community events.  Mr. Dahl, if you have suggestions on how to include those with disruptive behavior, please contact me and let me know your thoughts.  Right now I see your comment only reinforcing what I and many others have experienced – that many in the self-advocacy and advocacy movement have very little understanding or awareness of what those  with  extremely high support needs choices and desires are because they are excluded from venues that address issues that directly affect their lives.

When they are excluded how do you reconcile the saying “Nothing about us without us?”