Intellectual Disabilities (or PWID)

Being supportive at work

My pwid has challenges but she is very high functioning and she had a job at the age of 17. She worked at a very large facility in their cafeteria. There were a lot of signs that is was going wrong but I did not see it until she was let go. She had a job coach who was very nice but was enabling. I had to intervene much more than I wanted or needed. We certainly need to be supportive of our children but where do we draw the line?

My daughter’s esteem was plummeting when I decided to step in. Some would say finally and some would say not your responsibility. They had management turnover and some of the new people had no empathy for my pwid. She has an extremely high work ethic, and was appreciated for that but chastised for others things. Finally she had 5 ulcers and was a nervous wreck. Thankfully she is out of that situation, but I am not sure she will ever be able to work full time again.

Where do we draw the line, darned if I know? How much should and do we expect from the job coach? Is it reasonable? Are there rules for what to expect for the job coach? Should people with short term memory be expected to remember these rules? What are the answers to these questions? Let’s talk about it. What should you expect from the job coach? Take the time and write down important questions such as what are there implied rules. Are they written down to help your pwid remember them? What should they expect when they are working? If there is a problem at work, what is the job coach responsibility for doing at that  juncture? here are a lot of organizations that have job coaches? Shop around for personalities that are better suited for your child. You are always allowed to switch. It is a job for them, they get paid. You are not tied down to the first one. Shop around this is your child you are talking about. When your pwid gets to the point where they are self-advocating, you can release the reigns. Getting the right job coach will change the whole situation.

Even when you do find the right job coach, you have to constantly work with your pwid to raise her self-esteem and that is not easy. Their confidence is low and they want to hide rather than stir anything up. You need to instruct them on taking care of their selves.  You know you won’t be around forever, so they need to advocate for themselves. They will get there if we let them.

Intellectual Disabilities (or PWID)


Social problem solving

One of the things that will hold back a PWID is social problem solving. When something happens socially how fast do they recover? Are they proactive or reactive? If yours is anything like mine, she was (operative word here-was) very reactive. You and I both know actions beget actions. So if something innocuous happens and your pwid reacts it will balloon into something catastrophic. Which, as you know, is not optimum.

How do we, as caretakers, solve this situation? Gullibility isn’t pretty and most people take advantage of that. They make jokes because they can get away with it. How do we make our pwid’s wiser to the jokes of others? By constant reassuring and reasoning, they will eventually understand, after many hurts, but we must observe the letter of acceptability and propriety. Unfortunately, even more than the others who pursue them? One way is to teach, no matter how difficult, not to react, most people want to see the reaction of the person teased. Another, would be for them to reason with themselves. Silently talk to themselves on what the probability of what they are saying really happened.


Misunderstandings happen daily. At work when and a supervisor speaks to your pwid, more than likely there will be a reaction. Try to talk to the place of employment to see whether or not the job coach could be available during these times and rely on the job coach to do their job. They will be able to decipher any communication errors happening during that process. You cannot be there during these times and you need to put your faith in the job coach. You can shop around for job coaches. You do not have to take the first one. There are many agencies out there supportive in the employment role. Check around!


Try to see if there are any social clubs or agencies that focus on social skills. They are very helpful. I know my pwid was painfully shy. She now can have a conversation with people she doesn’t know. She has a bit to go but all in all she is doing very well, because of the social skill she belonged to. Try some of these suggestions and maybe your pwid will start be more proactive than reactive.

Intellectual Disabilities (or PWID

As I was searching for more helpful information I found a useful PowerPoint presentation from the AAIDD American Association on Intellectual and Developmental Disabilities. It relays just how important social skills are and how we, as caretakers, can help them. It is a free webinar for registered users: Free webinar on individualized supports planning for students with intellectual disability. It is a great resource for helping someone who has Autism or Down syndrome with ID. You will find the connection on the list of national links on the left panel of this page.

In a nutshell it talks about 2 individuals who have disabilities, what their particular difficulties are and how we can help them. They speak of 3 levels of behavior: red, yellow, green, pretty self-explanatory. Red meaning very bad, yellow meaning uh oh and green meaning go for it. They give you scenarios for each social behavior, what the reactions could be and the consequence of each behavior. This is eye-opening.  My feeling is a lot of people don’t necessarily understand the importance of social behaviors and how it could make or break a work environment. Social interaction is probably the most important realm of the work environment.

All that to say this, ISP’s Individual Support Plans! What does your child (adult) need? Do they need to know the boundaries at work? What is the most effective plan? Do they need instructions and constant reviews from the job coach? What other support do they need, self-directed monitoring systems using help tools like cards? Or do they need their peers and environment setting up mentors at work. They, in this presentation, have examples of what are inappropriate behaviors, reactions, and consequences. They also give examples of what would be appropriate things to say.

What are the positive supports for the learning disabled? As mentioned before can we use things like notecards discreetly, in case support is needed?  The answer, of course, is yes. I know sometimes there is so much support out there that you don’t know where to turn. Who will help in these specifics? Research! That is one of the things we can do and hopefully there are systems in place that can work with us. I have been working for a while on flip charts and note pads for individual situations. I am thinking, after reading this article, that there may be more of a need for these than I recognized. If anyone is out there who would be interested in having something like this, please post a comment, and I will get back to you.

Intellectual Disabilities (or PWID)

Depression

Let me tell you what is good about my pwid – everything. Does she surround herself with crisis? Sometimes, but I must tell you since we got her on her anti-depressant things are very, very different. We are having a very difficult time and she is the one who is the calming factor.

Pwid can suffer from major depression: it is shown in research that it is far higher with someone with intellectual disabilities, most of the time it goes unrecognized and goes untreated.

Recognizing depression:

The symptoms of major depression are changes in the person's emotions or behavior.

Symptoms may include:

         Loss of interest in favorite activities

         Weight changes
         Feeling sad, anxious or agitated
        Sleeping difficulties too much or little and still feeling tired
        Lack of energy and low motivation
        Feelings of hopelessness
        Loss of confidence
        Avoiding people
        Moving or talking slowly
        Being more irritable
        Difficulties with concentration and memory

However, people with intellectual disability can sometimes have some different symptoms.
They might include:

       Changes in usual behavior
       Needing more reassurance
        Loss of mastered skills
       Incontinence and/or constipation
       Anger, destructiveness or self-harm
       Complaining of aches and pains
       Sad, tearfulness and withdrawal

What Causes Major Depression?

       A sudden loss, a death of a relative, friend or pet, job loss, or changes in
       living or work environment
       Parents or family member with major depression
        An imbalance of chemicals in the brain
       Physical health problems such as thyroid dysfunction
       Various medications
        Physical, emotional or sexual abuses past or present

Getting Help

The first step is awareness and the time to get professional help is when a person’s behavior changes (for several weeks). Speak to the person's doctor, a mental health professional, a psychiatrist, psychologist or counselor.

Be with them or have someone who knows them to their initial appointments, because they will be able to provide support and any changes they have noticed.

With early diagnosis and treatment, symptoms of depression can be reduced or eliminated, and the long-term outlook is good.

Some treatment options involve a combination of support, psychological approaches and medication. Support includes information on depression and treatment options, as well as environmental factors that may contribute to depression such as loneliness, lack of meaningful activities, greater home/work stress

For each approach there are standard practices.  Whatever you do you need to be responsive to your pwid and the ways you can help them achieve the independent life they desire.

Intellectual Disabilities (or PWID)

Occupational skills

I remember the first job. It was set up with an agency that helps people with disabilities find and keep jobs with companies while paying them a small wage. This enables not only the company to get help but it encourages the PWID to achieve the goal of employment. My pwid worked for the agency a short amount of time when the company hired her full time. It was a wonderful honeymoon, but when hands change to new management the understanding went out the door.

Most people, whether they have a disability or not, like consistency. The PWID is stuck in the middle not knowing what will happen next. Employers, who are not familiar with the person with a disability, revert to using rules and standards made for people without disabilities. It’s easier for them and since the pwid is doing the job, no special allowances are even thought of again.

Most employers are not trained to help the person with disabilities. They have quotients that need to be met and find the PWID is more of a nuisance than a help. They believe all they need to do is be nice to the PWID. It is not only unfair to the person with the disability but to the company that hired them. That is why job coaches are an invaluable commodity. I believe there should be standards in place that help companies run their business with people who have disabilities.  The job coach is there to navigate the system for both the employee and the employer.

I believe getting and having a job for the PWID is very difficult, because their world is turned upside down with the demands of the job. It abruptly takes them out of their comfort zone.  The person with the disability has, for the most part, been the center of attention. Because the need is great, caretakers and parents have tried many venues to get them help, which means the focus has been on them and what people can do for them.

Taking the pwid from the sheltered environment and placing them in a position to help people rather than get help is a change in the routine. That is why they have organizations to help the pwid adjust to the change. You can ask your local case manager for help finding an organization that will enable your pwid to aspire for a job that will help with independence.

The ADA (Americans with Disabilities Act) is out there to help the person with disabilities have a respectful and dignified role in the workplace. I know that it is uncomfortable to realize that people would not automatically give the respect the PWID deserves, but ignorance is at play here. Most people don’t understand that people with disabilities have feelings and are not stupid.

 I would strongly suggest that you, as the caretaker, familiarize yourself with pertinent information, concerning their pwid. The employers do not have the right to change the rules because your PWID does not meet the norm. Employers sometimes treat PWID as second class citizens and assume it is okay. We need to be like a dog with a bone providing a quality standard for the person with the disability. The employers will, hopefully, understand that the PWID not only have the right to be treated fairly but there is also a legal obligation for that to happen.

Intellectual Disabilities (or PWID)

Practical skills—activities of daily living (personal care)

“Wash your face, brush your teeth”, does it ever stop? For a caretaker or parent of a pwid probably not. I don’t know about you, but I thought parenting only lasted 18 years or so. HA. My pwid is pretty high functioning, but wasn’t always. The diagnosis was pretty grim. I just stuck to my guns and worked with her. Just remember a diagnosis is NOT written in stone, it is someone’s perception of what the situation appears to be. After months of working on the fine and gross motor skills, we worked on speech and language. After that we worked on communication etc. etc.
etc.

What can we do to impress the seriousness of personal care? In most cases this is the forefront of the diagnosis of cognitive delay or pwid? Where does the disability begin and laziness take over? Hard questions for sure, but they need to be asked. Are we enabling our child or are we encouraging them? Certainly a fine line but the differences can be monumental.

Firstly, the judge needs to be the child. How are they reacting to the directives, with hostility or confusion? Let the child be the barometer. If, in fact, it is hostility, chances are pretty good we need to reassess the tasks we have set before them. They are not difficult enough. We need to challenge our charges and not frustrate them is the golden rule. Sometimes, I believe, we need to frustrate a little. People were very critical of me, but the results were astounding. Her disability rose from moderate to mild. Was I difficult- absolutely? But the proof is in the pudding. Am I also saying that I no longer have to be a parent? No, no I am not, but let me say it is easier.

You can’t just let them take control of their own bodies, the standard most people have is not their standard. The embarrassment level is not well defined here. They forget to do what is expected or they don’t really think it matters. They don’t understand the severity of the tasks set before them.  Don’t try to be their best friend. They need the stability of a strong leader. They need someone who can tell them right from wrong in a firm but kind way. Stay firm and know that when they get frustrated it can be a difficult situation, especially when there is an issue of depression. Hang tough, it will only get better.