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