Guardians are not the “bad guys”

As a parent and guardian of my young adult son with complex developmental disabilities which include an intellectual disability, I am continually made aware of the “fact” from trained self-advocates that my opinion has nothing to do with what may be best for my son and that, as a guardian, I am only self-serving.  Also, since I do not have a developmental disability myself, I have no knowledge of what it is like to live with a developmental disability – more specifically an intellectual disability.

I fully support trained self-advocates in their mission to advocate for a meaningful life experience and to shape public policies to which affect the lives of people with developmental disabilities.  I do not believe that the trained self-advocates have a full understanding of the needs and supports that people with complex, profound or intellectual disabilities (IDD) would choose.  I also do not believe that these trained self-advocates understand the issues of needing a caregiver 24 hours a day to assist with ALL aspects of daily living and how the guardian is involved in helping a person to have a meaningful life experience.

The legal guardian has a court-ordered responsibility to speak on behalf of and in the best interest of the person for whom they represent.  The guardian, together with other caretakers, and the person needing the supports work as a team and the guardian can be the spokesperson for the person with IDD.

I understand there are many people with IDD who are able to speak up and advocate for themselves and ask for what they need and that’s great. Unfortunately, just by definition of this particular disability,  only the people with the characteristics of “mild” ID may be able to live independently with minimal support and/or intermittent support during times of uncertainty.

Unless trained self-advocates are providing the day in and day out, 24 hour care needed by the people who experience  the “moderate,” “severe,” or “profound” characteristics of IDD, they have no concept of the needs, supports and choices that these people would make and have no right to speak on their behalf.  Since by definition, this population is unable to advocate for their needs and supports, the guardians, caretakers, family members, community members, healthcare providers, and friends who know the person best are the the most appropriate advocates for this population.

Denying guardians participation in advocacy on behalf of the people they care for is an act of discrimination against this population.  The slogan “Nothing about us, Without us” includes the guardians when they are speaking in the best interest of the person who they have the legal responsibility to make decisions for.

The table below clearly differentiates the severity categories in the classification of those diagnosed with intellectual disability.

clinical characteristics of Intellectual Disabilities

This discrimination is practiced by many organizations and advocates who claim they are advocating for those with disabilities.  In the response I received from Alex Clardy, Legislative Assistant for Seattle City Councilmember District 1 Lisa Herbold, it is clear they do not understand how this population communicates and the discrimination practices greatly limit the ability of the policy makers to fully understand how these issues will affect the people who work these jobs.

“The PwD Commission received no comment opposing the elimination of the subminimum wage certificates. Some people contacted Councilmember Herbold’s office concerned that people need the subminimum wage to get jobs.  Yet, no people with disabilities contacted Councilmember Herbold’s office to say so.  Since the PwD Commission, through their individual lived experiences, can speak to these issues best, Councilmember Herbold asked that I share with you excerpts from the PwD Commission letter that outlines several specific points as evidence against these concerns specifically and opposing the subminimum wage as a policy. “

( I will comment on the so-called “evidence” which the Seattle Commission for People with Disabilities (PwD Commission) provided to the City Council in another blog post)

It needs to be noted that there are no representatives with IDD on the PwD Commission and they totally disregard the guardians and the collective experience of the guardians, caretakers, friends and community members of people with IDD.  The PwD Commission is exclusionary when it comes to people with IDD.

Another group – Self Advocates in Leadership has the following items in their 2018 legislative agenda:

Sail 2018 legislative agenda

Are they suggesting that supported decision making replace guardians?  Is this logical for the people who live with severe forms of IDD?

 

 

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.