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.  On 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

 

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.

 

“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.

 

DD Ombudsman

Hopefully soon, Washington State will have a Developmental Disabilities Ombudsman.

This past year legislation was passed (thank you  Senator O’Ban,  the legislative champion for SB 6564, providing protections for the most vulnerable people from abuse and neglect) which will provide funds to develop The Office of Developmental Disabilities Ombudsman.

dd-ombudsman

There has been a great need for this type of oversight for all people with developmental disabilities but especially for those who live in an intermediate care facility (ICF).  While the Long-Term Care Ombudsman can help in situations for those who live in a skilled nursing facility, group home, assisted living or other long-term care facility, the Long-Term Care Ombudsman is not available to assist the residents in the ICF.

These residents have been without an adjudicator if concerns regarding their care  or other issue are not addressed appropriately.  This is especially true for those residents in a state operated ICF.  Without an independent authority to help mediate differences between the person and the state, these residents may not have had an objective investigation of their concerns.

Allegations of neglect and harm have been ignored or swept under the carpet by the state agency when conducting investigations of state facilities.  The DD Ombudsman will help prevent some of this injustice to our most vulnerable citizens.

I contacted the Department of Commerce last week to inquire into the development of the Office of the DD Ombudsman given that the bill was passed last legislative session.

Below is the response that I received from a spokesperson for the Disability Workgroup:

“A stakeholder meeting was held September 29th and written comments were accepted through October 15th.

I am currently drafting the solicitation to be released later in November. Evaluations of the bid responses will be in January 2017 and an announcement of the winning proposal probably in February 2017.

That organization will need to create the office, hire staff, train volunteers, etc. I anticipate them starting their ombuds duties sometime in the summer of 2017.

I hope this helps. Thanks for asking.”