About us, Without us

 

This week I have had the opportunity to really see what trained self-advocates think of those who are not able to speak and share their own experiences or opinions.  I have been told over and over again by these trained self-advocates that as a parent/guardian, that my observations are self-serving and that “Nothing about us, without us”, the catch phase of self-advocates has nothing to do with guardians.

Sara Luterman for blog

 

Sara Luterman, editor of NOS Magazine, wrote “”Nothing about us without us” refers to disabled people. Since you are not disabled, it’s not about you.” Ms. Luterman sent me a link to an article she wrote in The Thinking Person’s Guide to Autism  and then added “You may find this helpful, particularly, ” Just because someone has difficulty voicing a coherent opinion, it doesn’t mean you get to hoist him or her up like some kind of grotesque ventriloquist dummy.”  Thank you, Ms. Luterman for letting me know what you think of people I know and love.

Comments from NOS editor Sara Luterman

Ms. Luterman makes many assumptions regarding the role of a guardian and clearly does not understand the legal and court appointed responsibility that a guardian has – that is to represent the person in their best interest.  If this role is denied, I’m curious how these trained self-advocates involve and understand those who are not able to voice their opinions to those who do not understand them.  While pushing their agenda forward without understanding or allowing those with guardians to share their perspective and needs they are practicing discrimination against those more vulnerable than the self-advocates who can read, write and speak themselves.

The censorship that is practiced by several groups of trained self-advocates makes it appear that there is unanimity in their advocacy for people with intellectual and developmental disabilities.  In fact, the opposite is true.  Even when people write “I am interested in others perspective on this, other than my own” the editor will not allow another perspective to be shared.

This is one reason that I write on this blog – to share other opinions and learn from others.  I have learned a great deal by the fact that I have been blocked from several sites that are run by trained self-advocates.  They have no intention of understanding the needs of others and are acting like selfish adolescents who are rebelling against their parents.   Will they continue on their developmental path to adulthood?

Comments to NOS Magazine regarding Mental Age Theory Sept 2017

 

NOS Magazine would not publish a comment responding to another parent asking for others perspective

Mental Age Theory – Censored

Posting as a follow up to my previous post.  Apparently the editor of NOS Magazine did not approve of the comments that I and another advocate posted.  The comments have been deleted.  I have not received an answer from the editor regarding the reason for deletion.

In trying to describe situations and characteristics we often use similes and metaphors to
help those who are not familiar with jargon understand the situation. When using these
figures of speech, we are in no way belittling the person or saying that person is any less or more than anyone else. These figures of speech are extremely common and are used
throughout all types of writing and speech.
Maybe this is part of the problem with trying to describe a person. When saying that a
“person acts like a toddler ” we are using a simile – it is not saying that person is a toddler at all. It is describing that particular behavior at that particular moment or situation. In the case of my son, his behavior or understanding may not be typical for a 24-year-old in that particular situation.
One could also say that “he is a toddler” which is a metaphor. The simple definition of a
metaphor is that a metaphor states that one thing IS another thing but the statement is not literal – it is just figurative. Many may misinterpret this as the speaker actually saying this is true when in the fact the speaker was using a metaphor.
In the issues of trying to describe the support needs (be it physical, intellectual, behavioral or other) we often need to use similes to help others who are unfamiliar with that person or situation be able to grasp the magnitude of the need. Again, in no way does this figure of speech demean the person being spoken about but can help those understand the level of supports that may be needed to help that person be successful.
One other example of this is referring to a person with progeria as having the body like an old person. The person with progeria is a child but their bodies age prematurely and they have many health issues that are typically seen in the geriatric population. I wonder if people with progeria are offended if they are refered to as having the body of an old person?
Using similes and metaphors as figures of speech is a common and needed practice to help people understand others. We all have reference ideas in our heads about various things.
I’m sorry that people may not understand this issue but that is how the English language
works – it’s not the only confusing thing about this language

I have had contact with the author of the article “Mental Age Theory Hurts People with Intellectual Disabilities” and I hope to meet with her and my son in the near future.  This is my attempt at trying to bridge the gap that is present due to what I refer to as “motive asymmetry”

Below is a link to the deleted comments – these are my comments and responses that were deleted.

NOS deleted my comments on mental age Sept 2017

 

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

 

Sub-minimum wage in Seattle – corrections needed!

There has been recent discussion in Seattle, prompted by a recommendation from the Seattle Commission for People with Disabilities to eliminate wage certificates in Seattle.

The City Council and Mayor have followed the recommendations as written but they were not given accurate or current information regarding the use of these certificates. The commission states that they did extensive research over 4 months and have many testimonies from people with intellectual and developmental disabilities to end the practice of sub-minimum wage.  The commission has not been able to provide requested information regarding their research nor the testimonies that were delivered.

The Seattle Times published an article August 26, 2017 entitled “Seattle’s push to end lower pay for workers with disabilities:  Would it help or hurt?”   brings up several different issues regarding wages and disabilities.  It is a complex situation that takes more than 4 months of research from an isolated world view to understand who it affects and how it will affect them.  We need collaboration.

I have provided resources to the commission from the National Council on Disabilities on their recommendations regarding wage certificates.  The Seattle Commission recommendations are far different and the results could be devastating.

Seattle recommends elimination of certificates by January 2018 (5 months after recommendation) with no transition plan or funding plan in place (at least that they have been able to share – my requests for these have gone unanswered)  There is little collaboration with other advocacy groups or individuals who may be affected by this recommendation.  In fact, organizations and individuals who have had concerns have been blocked or banned from comments.

While I do not necessarily support the National Council on Disabilities plan, at least it is comprehensive and collaborative and takes into consideration the lives of the people involved.  There are time frames for goals and also depending on the age of the person and/or how long that person has worked at a job under a certificate, there is a sliding scale for transition.  This is a completely different process than what the Seattle Commission has recommended.

I provided information regarding integrated work for people with significant intellectual disabilities and provided an excellent resource with specific skill building and individual considerations that need to be addressed in transition plans for young adults.  The article from the Journal of Vocational Rehabilitation entitled Integrated work for those with significant intellectual disabilities is one such article with realistic goals and assessments to take into consideration with regards to supported employment.

Other issue of misrepresentation from the commission –

New Hampshire had no businesses utilizing  these certificates but they updated their policies to officially end the practice if they were to be used.

Maryland passed legislation that as of October 2016 they would phase out these certificates and after October 1, 2010, their Developmental Disabilities Administration may not fund providers that pay individuals less than the minimum wage under a specified federal certificate.    Maryland (as of January 2017) had 4067 employees utilizing certificates (Washington had 1963 employees using these certificates) (United States Department of Labor – Workers with Disabilities)

There are several different issues addressed in this article.  Apparently there are two employers that pay some specific people with some sort of disability less than the current minimum wage.  These employers do not have a wage certificate and it appears that they have agreed to pay the employees the minimum wage.  Clearly, this was a form of discrimination and should be called out and corrected.  There should be some follow up to ensure that these employees are able to keep their jobs with the same number of hours if they desire.

There is the other issue of people with significant intellectual and developmental disabilities who may be utilizing the wage certificates in order to have employment.   This is the the population of people with disabilities as a whole but a very small percentage of the population.  It is these very people who the commission will not listen to with regards to some very critical issues that could drastically affect their lives.

Nothing about us, without us – Please take it to heart!

Elimination of Sub-minimum wage in Seattle

The Seattle Commission for People with disAbilities  has made a recommendation to the Seattle City Council to eliminate certificates which enable employers to pay people with specific disabilities a commensurate wage.  I know that there are discussions all across the country that are looking at issues of employment and wages for people with disabilities.

This is a quick update on this very heated discussion.  From what I can assume by the articles that I read and the correspondence I have had with at least two of the commissioners regarding this issue vie Facebook,  there has been little research or collaboration with those in our community who may be, now or in the future, affected by this proposal.

Attempts to offer insight, requests for research, transition plans and funding plans have been ignored and people who expressed concerns have been rudely and aggressively mistreated by at least one of the commissioners.

Seattle Commission for people with disabiltiies Shaun Bickley and Cindi Laws

Below is the first letter that I submitted on the Facebook page.  This led to the Facebook page administrator blocking me from further comments or reacting to any posts – and this post was removed.

I am the parent and guardian of a young adult with significant intellectual/developmental and mental health disabilities – all of a degenerative nature and I network with many other families, caregivers, guardians and people with IDD who totally disagree with the assumptions that you and others are making about those with disabilities.

Yes, the members of the commission may have disabilities but is the specific population of those with significant intellectual/developmental disabilities represented?  The population which identifies as disabled is extremely heterogeneous and we need to have choices available to ensure that all have a chance and opportunity to work. We are all very concerned regarding this issues. For many of these people who work under these certificates it’s not about making a living wage – it’s about having a job and being a member of the community, participating, sharing experiences and having daily goals and activities – basically adding meaning to their lives. 


Unfortunately, my son and others who experience some of the same types of issues he does, are not able to articulate their ideas, attend meetings, and speak in coherent sentences – even with the help of assistive technology, and so their voices are not heard. 


You do not speak for them – in fact, it is quite the opposite because you deny the people who know, love and understand them, the opportunity to provide their ideas and choices. These people are their friends, families, guardians, caregivers, coaches, case managers, co-workers. These are the people who are all better equipped to fill in and be a proxy for their voices. 


The fact that you make assumptions that you are speaking for all people with disabilities without taking into consideration those who are affected by this issue is an act of discrimination and devaluation of their personhood. 


We need these certificates to ensure choice – remember the saying “nothing about us, without us” – Please take it to heart!

Mr. Shaun Bickley, one of the commissioners, took offense with my letter, stating “”nothing about us, without us” refers to disabled people, not to parents, siblings, neighbors,  co-workers and other allies”.  He wrote that they (the commission) were all disabled and therefore can speak for all people with disabilities – whereas, guardians’ concerns are only self-serving.  He wrote that all people, even if they can just move one muscle, can make their choices known – regardless if others understand them or not.  (I am very confused by this since if others do not understand, how are their choices known?)

In looking at the members of the commission I noticed that several are lawyers, a few have PhDs and several others have a variety of advanced college degrees, one is a filmmaker and an artist,  one is a medical doctor  – I’m curious which one has an intellectual/developmental disability?  This is the question that got me blocked from the Facebook page as it was seen as using “degrading language and making people feel unsafe.”

More to come – letters have been sent to The Seattle Commission for People with Disabilities, the Mayor’s office, the Office of Labor Standards and to each member on the Seattle City Council.

 

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.