What’s Working?

Do you need to hear good news? I swear, I’ll try to wrap this up optimistically. Bear with me, won’t you?

First let’s talk about “What’s Not Working?”


That’s right. He is not working.

Even though you will find State of New Jersey government pages littered with the words ‘Employment First’, I am not finding even barely adequate support for identifying opportunities for employment. I have been working with the Division of Vocational Rehabilitation since before Ethan’s graduation and, as to date, we have not even managed to get a ‘Vocational Assessment’. A vocational assessment is a process by which a job coach from an agency specialized in assisting individuals with disabilities ‘tests’ individuals in work settings to see what they can do and what type of work might be appropriate for them. Doesn’t it sound simple? We are 7 months post-graduation.

Paperwork is slow to go out, contact is spotty and agencies seem flaky – one got us all the way to starting the process when the representative informed me that she was going on medical leave until March. One never made contact. One agency that was listed in the provider list did not have the setting in which to carry out the service the are listed to offer.

Ethan is not a person who is going to walk into an establishment, fill out an application and be given a job. Nope – it’s just not going to work that way. But I know he is capable of work – he has a nice resume of things he accomplished at The Midland School.

He has worked cleaning the machines at a local gym.
He has worked in an office where he refilled over 30 copy machines with paper.
He has organized inventory and cleaned at Camp Bow Wow.
He raked out horse stalls (seriously!) at an equine rescue.
He completed many ‘piece work’ jobs at the work center.
He unpacked and stocked items at Home Goods (a favorite).

I just know he can do SOMETHING.

For many years, we believed that adult work centers would be available to Ethan an opportunity to hone his work skills, make a small paycheck and socialize with friends, but President Obama took that possibility off the table for Ethan. Although the legislation was signed in 2014, it was actually enforced…wait for it….approximately a week before Ethan’s graduation. From the article, you would think there are folks lined up to help Ethan work, but here I am knocking on every door asking for help – the signs of the doors look impressive, but so far no assistance has been made available.

I cannot find solid statistics on how many adults with Down syndrome are actually employed. What I am experiencing, first hand, in my locale, is very few. If you have seen an adult with DS employed in your community, things are not always what they seem. That person could, in fact, be employed – and I am super-proud of the people I know who are doing well. Another scenario that I have been made aware of is that person’s parent or  guardian could be paying for them to be involved in a program that provides work experiences. You heard that right – some of the scenarios are paid for – not paid employment. Now, if those programs are going to end in real employment, I could get behind that, but I am not seeing that happen either.

I have received so many referrals by friends to this organization. I initially thought it looked dreamy. This organization requires not only payment out of any state funds the individual receives, but a $10,000 yearly cash contribution from the family, plus a monthly work bond from parents. I cannot figure out how this is sustainable or truly beneficial in our situation. People who go into the cafe might get the impression that all of these individuals are ’employed’ by the bakery. Not so. If you note the wording at the bottom of the website –

“Ability 2 Work provides a supportive and inclusive job sampling, job training, and employment environment….”

Notice ’employment environment’ is not employment. I am not saying this is bad – you just need to be aware of what your goals and needs are.

I said I would be optimistic. Let’s give it a try.

The ‘Good News’ List

I have been informed that Ethan has received a referral to a new agency that is prepared to carry out vocational testing to see if he is eligible for any further training and employment support through DVRS.

Ethan is currently spending three days a week at a vibrant and active adult day program where he bowls and swims, does volunteer work, shops & cooks, attends activities out in the community and has made a lot of friends. The staff is caring and engaged and so far we are very pleased that this is an available option for him.

Ethan is riding AccessLink to and from his program daily. This is a credit that only Ethan can own! He does EXACTLY what he is supposed to do – he pays his fair in cash, keeps track of his money for getting home and acts appropriately while he rides. By choice, he calls me during his morning and afternoon ride to say he is on the bus – sometimes he Facetimes me and I get to greet EVERYONE on the bus 🙂 I could not be more pleased to report this – what an accomplishment – at other times in his life I could not picture this possibility!

I am aware that this is where we are today, and keenly cognizant that the current ‘system’ is not going to build or create what I ultimately see for Ethan 5 or 10 years for now.  I will keep on going within the parameters I have available to us right now – but….I am nurturing hopes and dreams that grow bigger by the day. And this….so much this:

“The best way to predict the future is to invent it.”
Alan Kay

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