Civil Rights, Subminimum wage and choice

There are many things to be considered when one is looking at eliminating the special certificates. The certificates are entered into by choice by the employer and the employee and look at a specific employee with a specific disability for a specific job for specific wage for a specific amount of time. There is absolutely no exploitation taking place and this is fully legal and actually quite desired by many who have been able to be employed under the certificates

The Push to End Subminimum Wage Remains Divisive (Disability Scoop)

Mr. Lemus is hardly an expert in the area and though people may appreciate the fact that he feels worried he really has nothing to be worried about when looking at what the parents and the disabled persons expectations and goals are. As legal guardians for people with disabilities the guardians and the person have gone through a court and medical process which has concluded that the person is best represented through the legal process of obtaining a legal guardian. The legal guardian has a legal duty which has been bestowed upon them through the courts to act in their persons best interest and to speak up and interpret the choices of the person they represent. This scrutiny provides a much better understanding of a persons needs and choices than Lemus and others like him who “worry”.  Mr Lemus states he was diagnosed in 2003 with a mild developmental disability.  By the very fact that Mr. Lemus is able to verbalize that he can understand what a hard job it is for parents and how difficult it was for his parents, indicates a higher level of thought processing (the ability to have abstract thoughts) than many of the people I know and work with have.  With the ability to have abstract thought, Lemus should also be able to understand that people are different and not all have the same level of or type of disability.  This is why it is so critical to listen to the legal guardians who do have a very good understanding of the support needs and choices of the person they represent.

This legal obligation is often ridiculed by Mr. Lemus and Shaun Bickley who routinely discount the legal obligations of the guardians. In denying the legal guardian a place at the stakeholder podium for the person they represent is a violation the civil rights of the person they represent. This violation is repeated over and over again by the likes of so-called advocates like Lemus and Bickley, in addition to agencies such as the Arc agencies, Self Advocates in Leadership, People First and other similar organizations.

In addition to denying disabled people who have a legal guardian a voice on issues that directly affect them, these so-called advocates also misrepresent job opportunities and quality of life experiences that are available for people with significant disabilities. Lemus and others believe that if only people were given the opportunity and educated that they would be able to be fully functioning without needed supports in the community. This is magical thinking and is not based in reality .

In fact Lemus, Bickley and other so-called advocate/activists often miss represent the law and the number of people affected by it. They practice censorship and other violations of the First Amendment by denying people directly affected by these laws to have their voices heard.

The real stakeholders have not been heard nor have their concerns and choices even been considered. When others who don’t even know them make their decisions which go directly against these peoples personal choices while at he same time denying those affected to be heard – Isn’t that Exploitation?

The documentary “Bottom Dollars” by Disability Rights Washington and Rooted in Rights states “If people are given the proper services and supports and proper assistive technology, the sky is the limit for many, many individuals.” This I believe to be true but there is a big IF.   We can’t make these decisions based on IF because we have already witness ed how little supports are funded. Do you really want to have your life choices decided for you by people who believe in magical thinking ? I don’t and I don’t want my sons or others I know lives destroyed because of the misguided activists/advocates

Life Long Learning

I have been involved in networking with families and support groups for life long learning programs.  These programs are intended to keep people active, engaged and involved in the community, focusing on activities which are meaningful for the person involved.  This is not job training and finding a job is not the goal of this type of program.  The goal is for the person involved to build relationships and participate in meaningful activities which are based on that person’s interests and desires.

By focusing on life long learning and engaging the person with their interests, we are experiencing true integration and inclusion.

The Building Blocks of Life Long Learning

How to Provide for Community Integration

Supported employment is becoming the only program that will be available for people with intellectual disabilities after the age of 21.  This program is replacing the sheltered workshops and in so doing is eliminating a very important part of many people’s lives. Please do not misunderstand the issue that I am trying to convey – read the story before making comments.

While supported employment is also a needed and critical program, it does not best serve the needs of many of our loved ones – particularly those with a dual diagnosis of Intellectual disability and mental illness of mania, psychosis or schizophrenia.  The population with a dual diagnosis is in need of a program which provides a stable setting every day of the week for several hours.  They do not do well in settings in which they only have support a few hours a week and then are left to their own devices to manage the rest of their time.

As a parent of one of these people with a dual diagnosis, I know that the supported employment program will not be the program that serves his needs.  There are so many opportunities to include him in community activities in other programs but if all the funds are used in the supported employment programs, there will be nothing left for those who need another type of program to function optimally.

I was recently at a local meeting area which has several eateries which serve a commons.  I witnessed a young man who was being supported by a “coach” in his job.  He clearly had no interest in the job, was spinning around, looking at the ceiling, while the coach would take a tea bag, put it in his hand and then he would drop it in the correct bin.  The coach was attempting much hand-over-hand work with him but it really was her doing the work.  She then picked up the bin of dirty dishes; put it on the push cart and then they both pushed the cart out of the commons.

This scenario made me feel really sad.  If a person has only so much support to enable them to be out in the community and experience life, I would much rather have my son experiencing opportunities that he enjoys and which get him out with people in a more natural way.  These activities are going grocery shopping, going to the library, going to a restaurant, walking to the park, going to church – these are all normal activities which he greatly enjoys and interacts with all types of people.  These are activities which he needs a 1:1 support person to help him.

Other activities that my son greatly enjoys are meeting with people and being in groups.  This is what the “sheltered workshop” provides for him.  No, he doesn’t do much work there and it’s not training him for a future job but it does provide stability, group activities which he craves, interaction with people, and structure to his day.  These are all critical components to his care which will be gone if the sheltered workshop is closed.  The sheltered workshop is not a sweat shop nor is it slave labor.  He does learn skills and is capable of some work with 1:1 support at all times. He gets paid for the piece work that he is able to accomplish but that is definitely not his motivation since he does not understand the economics of having a job and supporting himself.

If my son was only allowed 5 hours a week of a support person, it would be much more beneficial to him to use that for activities which he enjoys and activities which he chooses rather than a type of “employment” that means nothing to him and is only there to make others feel good that they are accomplishing something.  This type of “employment” would be torture for my son.

My son and many like him are not going to be cured and will not be “getting better”.  Yes, they are able to learn but will always need a high level of support.  They are not people who can be taught a skill and then be sent off independently to do that skill.  Even when they know how to do something, they need the constant support to maintain focus and follow through.

People like my son are very much like people with Alzheimer’s disease.  A similar condition is dementia.  Dementia, which my son has, is a brain disorder which obstructs and diminishes cognitive performance such as memory, judgment, personality and social function.  We need to be realistic in the choices that we make with services.