Kevin is trapped!

Many have been following the issues of those with IDD who have been dropped off and abandoned by their group homes into the hospitals.  This is not a new issue but one that has finally been acknowledged as happening.  We need a solution  – NOW

Recently, Keven, our 26 year old friend has been “on hold” in the Emergency room at St. Joseph’s Hospital in Bellingham, WA.  I sent an online complaint to the Washington DD Ombudsman and maybe the more complaints they receive, the better the chance at a positive solution – not only for Kevin but for others.

Here is the information that I submitted on my complaint – feel free to submit your own complaint regarding the issues that are happening. DD Ombuds complaint submitted May 6 2019

Today, Kevin’s mom informed me of the following information she received:

Kevin’s situation…

This afternoon after visiting Kevin at St. Joseph Hospital, I was told that if he attempts to leave the unit (SECU).

.. they will let him leave the hospital and 911 will be called.

When is this nightmare going end??

 

 

Kevin – 34 days trapped, restrained, drugged and traumatized in a hospital

Why is traumatizing an autistic man allowed to happen?

How is Kevin going to heal from this abuse?

drug addiction

Kevin’s 33rd day in a hospital room. (Now it’s 34 days as of Feb 13, 2019)

The last 4 days Kevin has become increasingly desperate. The nursing staff at the Medical Care Unit where he is are such a great group of professionals. They have tried to keep him occupied, even taking him on wheel chair rides around the floor, but each day that passes he grows more restless. Kevin is a 5 year old (6’2” tall) that wants to go back to his safe/familiar room, surrounded by his things. He also wants to go for hikes, to the store, the movie theater, and the library. Now he is hitting himself in the stomach and legs with such force that his legs and abdomen are completely covered with purple and black bruises. This is the only way that he can deal with this overwhelming stress. He is limping because he hurt his left leg during the self-injuring actions that now are happening continuously throughout the day. Yesterday he became increasingly anxious with each passing hour, pleading for his “Bellingham house”. He began to scream, hit his room door and window and security was called. Kevin hit his RN and one of the security guard during the incident when they attempted to keep him safe in his room. Throughout the day he was heavily medicated with no success. At night, he managed to escape from his room and run downstairs to the hospital lobby and then outside where he was wrestled by security until Bellingham police arrived.
After he was guided back to his room by the police he was finally medicated with an IM injection of B52 (Benadryl/Haldol/Lorazepam). He has been asleep since then, in a way I feel this is better for him to stop his mental anguish and physical self-inflicted pain.

This situation is a disgrace, my child deserves better from our system. He will severely injure hospital staff or will be gravely injured by medication administration and/or being restrained.

Please contact legislator:
Sharon Showmake at 360 7867854
Luann Van Werner at 360 7867980
Doug Erickson at 360 7867682

Plead for my son to be able to go to a respite bed where he can have physical activity outside of his room, He is unable to comprehend what or why this is happening to him. He needs a less restrictive environment where he can feel free and safe.
please feel free to share!

Marcia Alspaugh

Budget downsizes (closes) Fircrest

Write to your Washington State Legislators and the leaders of both chambers:
Senator Sharon Nelson, Senator Mark Schoesler, Representative Dan Kristiansen and Speaker Frank Chopp – remind them of the need for a continuum of care and remove these sections from the budget.

 

Dear Speaker Chopp,

I am a constituent and am writing to you with some concerns regarding ESSB 5048 – particularly Section 205 – Part 1 (K), Part 2 (C) and Section 206 Part 18.   I am also a registered nurse specializing in the care of adults with intellectual and developmental disabilities and a parent of a young man who recently transitioned from Fircrest to supported living in the community.

These sections state that appropriated funds will be  “provided solely for transitioning clients from Fircrest school residential habilitation center into community settings.” The clients from both the nursing facility and the intermediate care facility would be forced to move and it appears that this is a step towards closing Fircrest.

There are many concerns raised regarding attempts to close or downsize Fircrest through a budget proviso.  It is written in law (Olmstead v L.C. 1999)  and supported by CMS regulations that a person has a choice to live in an intermediate care facility.  In addressing the issue of changing care from an institutional placement to a community placement, there is a three part test to determine if community placement is appropriate:

  1. The State’s treatment professionals have determined that community placement is appropriate
  2. The transfer is not opposed by the affected individual and/or guardian
  3. The placement can be reasonable accommodated by the resources available to the State

If the above points are satisfied, then it is appropriate to have people move but I know that they are not met for the majority of the residents who live at Fircrest or other RHCs in our state.

It is important to address the crisis we have with community care before taking steps which would only increase the risk of harm to some of our most vulnerable citizens.

It is critical to keep our RHC communities open to best serve the diverse population of people with intellectual and developmental disabilities.

Save Fircrest – Essential Supports

A bill has been passed to the Senate Floor to vote on closure of Fircrest School – one of our states Residential Habilitation Centers (RHCs).  The RHC houses two critical communities of care – a Skilled Nursing Facility (SNF) and an Intermediate Care Facility (ICF).

It is a fact that there does need to be some capital improvement to the facilities to provide a safe environment for the residents and this is why we support the Fircrest Master Plan Fircrest Master Plan A-2

The campus has been neglected in the capital budgets for years and this is one reason why there is a large dollar sign to this project.  When buildings are neglected, they deteriorate and become unsafe for residents.  This is the situation we face now.

This does not mean that the land should be sold and the residents forced from their homes and community.  It does provide opportunity to change and to make needed improvements and to re-access the needs.

These are the opportunities that we support:

Fircrest Master Plan Alternative A-2

Federally Qualified Healthcare Center with oversight provided by the Department of Health for Fircrest residents and adult residents in the state who live with intellectual and developmental disabilities.

Collaboration with the University of Washington, Center on Human Development and Disabilities to provide specialized and comprehensive healthcare to community members.  This collaboration would also provide training for students in the healthcare professions.

Opportunities for improvement are not an option if 2SSB 5594 passes.  This bill seeks to close Fircrest and deny current and future residents access to the necessary supports.

We need to defeat 2SSB 5594 to protect out most vulnerable citizens.  Tell your Senator to Vote NO on 2SSB 5594.

 

Senate Health Committee Hears Bill which looks to close ICF/IDD

Today SB 5594 was had public comments in the Senate Health Committee (Washington State)

There are actually some wonderful new ideas expressed in this bill (Federally Qualified Comprehensive Community Healthcare Clinic!!) but plans  to consolidate  from a combined campus of a skilled nursing facility and an intermediate care facility to just a skilled nursing facility is troubling.  This is  not explicitly written in the language but it is clear this is the goal.

The bill states a building at Fircrest must be remodeled and updated to serve as a skilled nursing facility.  Other steps must be taken to consolidate other buildings and ensure residents are provided the opportunity to stay at Fircrest or move into the community.

Given that Fircrest will only have a skilled nursing facility, what will happen to the residents who are not eligible for those services but choose to stay at Fircrest in an ICF/ID?  The bill does not address this population that currently resides at Fircrest.

“Former Fircrest School residents who fail to succeed in the community may, after repeated failures, remain in the community or may choose to move to another residential habilitation center; however, former Fircrest School residents may not return to Fircrest School.”

The other HUGE issue is that the community is far from ready to be able to accommodate the needs of the number of residents who may choose to live off campus.  Already there is a long waiting list for housing, staff and other services.

The critical issue that needs to be addressed before any changes can be made is that of supported living wages and supports.  These wages and supports need to be appropriately funded to provide the services.  This is the system that will provide stability, success and sustainability to community residential settings and is the issue that needs to be addressed as a first step to any issues of consolidation of the intermediate care facility.

Washington State Institutions

Washington State has an “interesting” concept in place with regards to the campus based communities for people with intellectual and developmental disabilities.  The term used in Washington State is Residential Habilitation Center (RHC).

What makes this term very confusing is that the RHC could be a Specialized Skilled Nursing Facility (SNF), an Intermediate Care Facility for People with Intellectual and Developmental Disabilities (ICF/IDD) or both.

What makes the term RHC even more difficult is the fact that there are different rules and regulations for the SNF and the ICF/IDD so when one talks about the RHC which type of facility is one referring to?  Most people do not realize that when referring to the RHC they are actually referring to two different types of institutions.

what-is-an-rhc-2017

Nursing care is an area of concern for those who live in the ICF/IDD.  Even though the ICF/IDD is defined as a healthcare facility under the Social Security Act, Washington State does not define it that way.  The ICF/IDD also does not fit under the definition of “Long Term Care Facility” by Washington State Law but many consider it a long term care facility.  This ambiguity about what the ICF/IDD leaves the residents floundering in limbo without appropriate oversight for the care that is to be provided to the residents.

This issue is clearly seen when looking at who does the surveys and investigations in each type of facility.  The SNF has all registered nurses on these teams while the ICF/IDD rarely has a healthcare professional on the team.  Even if allegations are written concerning medical, nursing or other healthcare related problems, there is no healthcare professional on the investigation team to assess the situation.  This is a problem.

rhc-investigations-2016

There are several solutions that can be examined for this error.  The first solution would be to transfer oversight of the healthcare from the Department of Social and Health Services to the Department of Health.  Another solution would be to include registered nurses or other healthcare professionals to do the investigations and surveys.  At the minimum the healthcare professionals should be consulted for any allegation that pertains to healthcare.

 

ActionDD – what are your goals?

ActionDD, a grassroots organization in Washington State is holding a winter meeting and legislative reception on Tuesday February 7, 2017, in Olympia WA.

I understand the goals of this organization are to keep the RHCs open and I fully agree with that goal.  I know that we need to have a full continuum of care to provide the best and appropriate supports to people in the IDD population.

This population is also one that experiences a great healthcare disparity – no matter where one lives.  Residence in the RHC does not provide the healthcare and oversight that people are led to believe exists in that setting.  Does ActionDD address this issue?

My concerns regarding appropriate healthcare with oversight by healthcare professionals is critical to the management of the RHCs.  Currently there is no oversight of the healthcare by the Department of Health and quality standards for healthcare are lacking.

I understand people are afraid to call attention to issues of concern regarding the care in the RHC and often refer to the oversight as being above and beyond that of oversight in community settings.  People are afraid that any “bad press” for the RHC will encourage those opposed to a full continuum of care to point out these deficiencies.  That may be a risk but there is also a risk to keeping quiet and allowing neglect to occur.

I am guilty of feeling that fear.  My son was a victim of various forms of healthcare neglect while living at Fircrest.  The neglect was systemic and has left him with life long complications.  In my attempts to collaborate and have appropriate care provided, I was ridiculed and harassed by administration for my concerns. My concern for his healthcare was treading on their turn and they had no intention of collaboration.  My speaking out about the healthcare neglect has started to open up dialogue but there is a long way to go.