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?

 

 

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.