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.

ASAN misunderstands Guardianship

There was a recent article by Amy  S.F. Lutz in Spectrum News regarding the freedom to chose where one wishes to live.   The article was excellent but also of interest to me was the arguments that ensued in the comments.

It is clear that ASAN (Autistic Self-Advocacy Network) does not understand Guardianship – both how it works and what it is – in this Easy Read Edition  of “The Right to Make Choices” that describes guardianship.  This makes guardianship seem as if the guardian owns and controls every aspect of the person served by the guardianship.

There are several issues that ASAN needs to understand regarding the differences and similarities between supported decision making and guardianship.

  1.  A person is not “put” under a guardianship – there is a choice made in the beginning of the process and one has the choice if they want a guardian or not.  Some people do make the choice they want a guardian and choose that person.  Some people say “no” and that choice is honored.   ASAN seems to miss this first step in a guardianship process.
  2. Guardianship is a legal contract of a choice that has been made.
  3. A person with a guardianship is allowed to vote – guardianship does not remove that right.
  4. ASAN states “Legal adults do not have guardians” and “Legal adults make their own choices.”  Are they saying that those with a guardian are not adults, not legal or what does this even mean?  When Do You Become an Adult may provide some of the answers or it may make it more confusing.
  5.  According to ASAN, Texas is the only state that has laws for supported decision making.
    • Courts have to think about supported decision making options for you before they can assign you a guardian
    • Guardianship is the final option if supported decision making does not work
    • An adult with a disability signs a supported decision making agreement – this is legal as long as the person with a disability UNDERSTANDS the agreement
    • You sign the agreement in front of witnesses.

An example of Supported Decision Making can be seen in this terrifying situation (at least terrifying to me – it may look like independent choice making or supported decision making to some self-advocates though and heralded as “success” for this man).

I have a questions about accountability and responsibility with supported decision making.  Since there are no laws (except in Texas apparently) regarding supported decision making, I have great concerns about safeguards to prevent abuse and vulnerable people becoming targets of predators.   Since supported decision making occurs without any special legal process, who is accountable?  A person who has not attained some developmental steps in the natural process called life, cannot be held accountable for decisions and actions which they do not understand.

I am the guardian of my adult son who happens to have intellectual and developmental disabilities and a shizoaffective disorder.  When he was asked by the Guardian Ad Litem  if he wanted me as his guardian, he said “yes”.  He made that CHOICE which states he wants me to make decision for him that are in his best interest that he is unable to make.

ASAN and every other organization or advocate that says he is being controlled and I make every decision for him are not living in reality.   Sara Luterman has made huge assumptions regarding the parent-child relationship and that of guardianship.  She writes “They do not believe that their children are capable of having opinions about any serious or real issues. They see their children as extensions of themselves, rather than distinct human beings.”

My son is far from a puppet for me – he is is own person with very distinct opinions and is very clear about what he wants and doesn’t want.  There are also areas of life that he clearly has no ideas about – for instance managing any healthcare issues, money or safety issues.  He is unable to call for help if he is in trouble.  He is unaware of unsafe conditions and hazards in the community.  Just because I am his guardian, who he chose to make some decisions for him, does not mean that decisions I make are what I want. The decisions I make for him are decisions that are in his best interest.

 

 

 

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.