Abled/Disabled Division

Many recent issues with regards to advocacy are termed with the labels of “abled” or “disabled”.  This really strikes me as very odd, particularly given that so many have rebuked being “labeled” in the past so readily label others.

“Nothing About Us, Without Us” and “Did you even ask disabled people who would be affected”  are two of the most common statements from disabled self-advocates.

I have also found that one is labeled “abled” with no regard to disability – but it tends to mean a person who does not agree with the “disabled” viewpoint.  From those who self-identify as “disabled”  (which from my observation has no bearing on if the person is disabled or not – I know some people with significant disabilities who would never self-identify as “disabled” because they are who they are) I have witnessed extreme judgements and strong biased opinions written that are based solely on fiction.  No facts or evidence are produced to support those judgements but they are sold to others as the truth.

Also, disabled activists may be very “abled” in comparison to others who are disabled – do these “abled”  disabled activists speak for every disabled person?  In my opinion, they do not and have no interest in learning about the needs and choices of those “more disabled” then they are.  How does one even measure disability when it is so varied from one environment to another?

The disadain, hate speech, extreme judgements of disabled activists against anyone they define as “abled” (again this has no bearing if the “abled” person has a disability or not since it is in the eye of the activist) borders on pathology – delusions and fabrications of actions they believe “abled” people have done – is something that needs to be addressed and called out.

Using the “disabled card” to get away with abusing others is not okay.  It only builds walls and barriers to collaboration. One such disabled activist in Seattle swears at, calls people “sociopaths” and makes up abuse by other disabled advocates if one has a difference of opinion.  People say “he’s disabled” as if that excuses this behavior.

These are just some of the reasons that I just have to laugh at the “Breaking Barriers” award given out by Disability Rights Washington – an annual award given in several categories.  The advocate award is given to someone with a disability for breaking barriers to advance the rights of and to improve the lives of people with disabilities.

Obviously, my definition of justice and ‘breaking barriers” are very different than DRW’s definition.  They chose Shaun Bickley, the co-chair of the Seattle Disability Commission and the Secretary of Self-Advocates in Leadership (SAIL).  I totally agree that this person is very committed to his activist role but I also question his ability to build bridges and work collaboratively with others who may not totally agree with his opinion and deceit.

In addition, the issue of the elimination of special certificates which allowed people with disabilities to be able to be employed at less than the minimum wage has proven to be harmful to those involved – Mr Bickley is receiving this award for his successful campaign to ban these certificates.  This is discrimination against those with disabilities and prevents them from having jobs as learners, apprentices or messengers.

A New Low for Disability Rights Washington

I have recently been informed of a situation in which a lawyer from Disability Rights Washington – Susan Kas – removed a 19 year old young woman from her family home and took her to an undisclosed ‘shelter” in another city.  Disability Rights Washington  (DRW) is the federally funded Protection and Advocacy Agency for our state.

Last month, Amber O’Neil, age 19, went missing from Seattle and was thought to be with a 52 year old man she met at Seattle Central College.  Here is a link to the news media coverage of her missing and then of her being found in Oregon.  David Posey was the man she was with and he was taken into custody in Oregon by US Marshall Service on June 20, 2018 for parole violations and remains in prison.  He had previously been charged and found guilty of grand larceny, larceny of banknotes/checks (counterfeit money) and “simple assault of family members”.  He also had counterfeit money on his person when he was taken into custody on June 30, 2018.  Amber returned home to Seattle but continued to correspond with David Posey, claiming to be in love and wanting to marry him.  Amber’s father is against this relationship and this difference of opinion has caused some turmoil in the family.

David Posey had instructed Amber to contact DRW regarding her civil rights.  Amber did as she was instructed and DRW staff lawyer, Susan Kas, has personally been involved in helping Amber with her civil rights.

Susan Kas, staff lawyer with DRW

Susan Kas personally went to Amber’s home, served some papers to Amber’s father and together with some other staff removed Amber from her home and took her to an undisclosed “shelter”.  Amber appeared in court with about 5 DRW lawyers/staff on July 9, 2018 regarding issues of guardianship.  Adult Protective Services was also involved.

Disability Rights Washington cannot provide direct assistance in the following situations:

  • Criminal law
  • Family law
  • Assistance becoming the guardian of an individual with a disability
  • Out-of-state issues
  • Workers compensation
  • General medical malpractice & personal injury
  • General consumer bankruptcy issues
  • Any issue or problem not directly related to your disability
  • Assistance finding employment, housing or financial assistance
  • Assistance filling out forms & Social Security applications
  • Anything that is not the wish of the person with the disability

From the video Disability Rights Washington – Rooted in Rights

“when we choose how we advocate, we don’t advocate for what a person may say is best for a person with a disability, we really try to focus on the expressed interest which is different than what some people might call the best interest of someone.  That’s what we think everybody, regardless if you have a disability ought to be able to make important personal decisions for themselves.” (Susan Kas, Staff Attorney, Disability Rights Washington)

Issues of Guardianship – The court needs to be involved  there are legitimate concerns in this issue regarding the relationship of a vulnerable adult with man almost 3 times her age who has a history of being convicted of grand larceny, counterfeiting and abuse.  He was on parole but is currently incarcerated after taking Amber out of state – she was missing for about 30 days – when they were located in Portland on June 30, 2018.  Common sense tells us that this relationship would be cause of concern FOR ANYONE! Having a concern about this relationship is not abuse – it is true concern for the safety, well-being and protection from exploitation of a young woman who just recently graduated from High School.

DRW sees this as a violation of Amber’s civil rights.  Are they now providing her with the counseling that her father was?  Are they providing Amber with honest choices and truth about the situation?  Or, are they using her as a PAWN to in this horrendous situation of civil rights vs. common sense and caring?  This is not a game, this is the life of a young woman who was in school and had an internship for this summer that she has now lost.  She had goals of an education and a better life.  What does she have now? What will she have in the future?

Disability Rights Washington is governed by a Board of Directors, with help from our Advisory Councils. These groups are made up of people with disabilities, family members, and others who have an interest in disability rights.

This video describes the Protection and Advocacy System

A substantial portion of the Disability Rights Washington budget is federally funded.

Mental Age?

Motive asymmetry – the belief that one groups motives are driven by love, care and affiliation and the rivals are motivated by the exact opposite.  This term is generally referred to with regards to political conflict but I see fully activated in the issue of advocacy for those with intellectual and developmental disabilities.

It feels to me that motive asymmetry is at play with regards to trained self-advocates and parents/guardians/healthcare professionals/case managers/disability advocates when any topic related to care, support, employment, inclusion, residential settings and community environment are discussed.

As a parent/guardian/disability advocate, this concept is very clear to me since I have been told by many trained self-advocates that guardians are only self-serving. This is truly not my perspective at all but it is attributed to me since I am a guardian. One effective tool used to help bridge this conflict is to meet in person. Once you know the person, views and ideas may change. It is only by meeting people and working together as people, rather adhering to  inflexible ideologies, that we can break down these silos and make progress.

Mental age theory

Ivanova Smith has written an article in NOS Magazine regarding the issue of using “mental age” as a description for people who happen to live with an intellectual and developmental disability.  She states “We need to educate medical professionals that there are better and more respectful way to explain the needs of people with Intellectual/developmental disabilities. Difficulty doing specific tasks isn’t the same thing as being an actual child.”

I have never seen this description used to state that an adult with IDD is a child – they are adults who have a variety of support needs in many areas of life skills.  Using labels and descriptive terms for various ranks, steps or skill levels are used in all types of employment, school, sports and athletics,  and hobbies.  One must pass through step 1 to get to step 2.  This is a natural progression.  One need not necessarily master the step but at least have a passing effort before one is able to proceed or progress.  There could be many reasons for a rapid or slow progression through these levels.
People do not excel in all areas of life and do not need to be an expert in everything they attempt to have enjoyment and meaning from it. Also, people may “stall out” at one step and many years later may revisit and then gain more skills. This is not set in stone as it is a fluid process and there is always learning and progress occurring as people experience life. This progression is also true with developmental, emotional and maturity stages. It is not “good” or “bad” but just is.

I often hear that people do not like labels – but labels help us to learn and navigate life in so many ways. Think for instance of working in trades – there are labels applied to levels of skill development – apprentice, journeyman, master. One is not a better person than another by having a different label but has a different skill set. These labels help us, who may not be familiar with the work to be done, who we might want to seek out for consultation. Labels are not inherently bad but can be extremely useful in many situations.
I am asking for your input into how you, as a trained self-advocate, differentiate between people who may need an extreme amount of support to manage the daily activities of living versus someone who may only need some occasional guidance with specific areas? How do you, as a trained self-advocate, differentiate between someone who is unable to utilize public transportation and needs to be driven everywhere in a private vehicle versus someone who can navigate the city independently on public buses?
Or maybe you do not see the need to differentiate – if not, why not?

Please contact me Ivanova – I would love to meet with you in person.

Thank you – Cheryl Felak

 

Have you ever heard the phrase “that person has the mind of a five year old In an adult body?” It is something many adults with intellectual disabilities, like me, have to deal with. For years, medical professionals have told parents of newly diagnosed Intellectually disabled people that they would mentally be children for their entire lives.…

via Mental Age Theory Hurts People with Intellectual Disabilities — NOS Magazine

#inclusivity  #diversityisstrength  #YouAreTheChange  #beyondinclusion  #disabilityrights  #intellectualdisability   #disabilitysupport  #mentalage  #agetheory

 

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.

 

Who are the investigators?

Concerns regarding medical and nursing neglect for residents residing in one of our state’s intermediate care facilities has led me to ask many more questions.  Questions that I should have asked long ago before harm and  permanent damage occurred and quality of life diminished.

But on the other hand, the fact that my allegations were dismissed as “unfounded” when I knew that neglect had occurred, prompted me to do my own investigation.

In Washington State we refer to the state operated institutions (both skilled nursing facilities (SNF) and intermediate care facilities for people with intellectual and developmental disabilities) as Residential Habilitation Centers or RHCs.  This presents several problems – the first one being that the SNF and ICF have different federal and state rules and regulations.  When both the SNF and ICF are combined in one campus, residents, community members and legislators fail to understand there are two distinct entities involved with different regulations to abide by.

There is also confusion regarding “long term care facility” and “healthcare facility” and which state agency should provide oversight and licensing.  In Washington State, the ICF is not included in the definition of “long term care facility” but does fit under the definition of “healthcare facility” by the services provided at the ICF.

This issue is particularly troubling when the state ensures that those who reside in the ICF receive all their healthcare needs on campus by state employed medical providers and nurses.

The Federal Regulations are clear with these issues but Washington State is confused.

Here is just one example of an issue that at this point is unsolvable given the system that Washington State has in place for oversight, surveys and investigations.

There are allegations of multiple medication errors over several years – medications documented as being administered but the pharmacy did not dispense enough medication to account for all the documented (by licenses nurses) administrations.  The pharmacy only dispensed 12-46% of the medication the nurses documented.  There was harm done by not administering the prescribed medication.  This was the practice at the ICF for 9 medications over 5 years time – many, many nurses signed off as administering these medications.  If one looked at the medication administration record you would assume that the client received ALL the medication as prescribed –

BUT – there is another story when trying to match the pharmacy records to the nursing administration records.  There is a MAJOR problem with the SYSTEM.

The ICF is licensed by DSHS.  That means that DSHS is the state agency providing oversight and investigations.  When the state investigator goes in to look at these allegations they see the medications were documented as given, meaning that the allegations are unfounded – no medication errors and the nurses provided the care.

There are clear violations of some state nursing standards (State Nurse Practice Act),

  • Willfully or repeatedly failing to make entries, altering entries, destroying entries, making incorrect or illegible entries and/or making false entries in employer or employee records or client records pertaining to the giving of medication, treatments, or other nursing care;
  • Willfully or repeatedly failing to administer medications and/or treatments in accordance with nursing standards

Failing to meet these standards could lead to disciplinary actions but DHSH does not consider these violations because the nurse documented administration and an error was not observed.

Unfortunately, in this situation, the State Department of Health and the Nursing Care Quality Assurance Commission are unable to do anything since they are not the licensing agency for the ICF and the error is not attributed to one identified nurse. The licensing agency needs to address these violations but DSHS (the licensing agency) does not see these medication errors as violations or errors.

So – how do we as advocates, healthcare providers, parents and legislators ensure that these standards are met?

As stated in the Code of Federal Regulations and the Social Security Act Section 1905 (d)  the “primary purpose of the ICF/IID is to furnish health or rehabilitative services to persons with Intellectual Disability or person with related conditions”.

Given that the ICF is a healthcare facility and its purpose is to furnish health services, we need to have healthcare professionals involved in the oversight, surveys and investigations of the healthcare provided – Washington State is not providing the needed oversight of healthcare to this vulnerable population.

investigations-by-rns

 

 

 

 

“Allegations Unfounded” ?

Medication error rates of 52-89% on several medications is neglect.

Failure to apply splint correctly 85% of the time is neglect.

Neglect occurs when a person, either through his/her action or inaction, deprives a vulnerable adult of the care necessary to maintain the vulnerable adult’s physical or mental health. Examples include not providing basic items such as food, water, clothing, a safe place to live, medicine, or health care.

Signs of neglect. (from Washington State Department of Social and Health Services)

The above examples of error rates are just a few that have occurred to my son while living at a state operated intermediate care facility for those with intellectual and developmental disabilities (ICF/IDD).  These issues and others have been reported to the administration and there have been several investigations done and the conclusions returned have been “allegations unfounded.”  I find these conclusions indefensible given the documents that have been submitted for review.

One such issue that went on for several weeks started when my son developed swelling and pain in his right ankle – the ankle that had very recently recovered from a serious sprain.   The lack of response from the medical and nursing team from the very beginning of this injury being reported to the day I removed the splint was met with frustration. It was a very simple and straightforward issue that could have had a very simple and straightforward response – it turned into something totally different.

It was not until I was totally frustrated that I even mentioned the word “NEGLECT” and that is when the superintendent “self-reported” to Residential Care Services  (RCS) and the first investigation was done.  That investigation took several months to complete and the allegations were deemed unfounded.  During those months I was not allowed to talk with anyone at the facility regarding the care since it “was under investigation.”

This is a link to the email exchanges that I had with the Health Care Coordinator (HCC – RN), the Nurse Manager (RN4), the Habilitation Plan Administrator (HPA) and the ICF/IDD Superintendent.

neglect-with-foot-splint-at-fircrest-june-2015

splint-on-wrong-foot-upside-downsplint-on-left-foot-should-have-been-on-right-foot

 

Since that time, I have requested to have the issues investigated again and have provided more documentation to RCS.  I have felt as if I have been the one being investigated because each conversation that I have had with an investigator has started with what they have heard about me – trying to find issues with what I have reported or how I have acted.

The only thing that they have been able to say is that the photos that I have provided are not “proof” because I could have photo-shopped them.  Their “proof” is the documents and charting of their nurses and staff (which now have been found to be in error when trying to reconcile medications dispensed to medications documented as administered).  They have not and will not consider email correspondence or medical charts from outside medical providers.  They have not enlisted healthcare professionals to review the allegations of medical and nursing neglect until this very last investigation involving almost countless medication errors.  Yet, I am the one who is looked at for wrong doing.

In doing the research for these allegations I have learned that the Department of Health and therefore the Nursing Care Quality Assurance Commission has no ability to investigate since they are not the licensing agency for the healthcare provided at the ICF/IDD.  Since the issues are systemic to the nursing care at the ICF/IDD it is up to the licensing agency to investigate.  Here is a link to the letter I received from the Nursing Care Quality Assurance Commission – Discipline Section, Health Services Consultant.

dshs-needs-to-look-again-at-nursing-neglect

So, it’s back to the drawing board of contacting DSHS and asking for explanations of why the allegations are unfounded.

All residents are at risk of harm until these and other issues are acknowledged and corrected.