Total Holiday Team-Up for Nicky

Things have been going incredibly well for Nicky and his Shared Living provider, Nonotuck Resource Associates; as well as at his day program at HMEA, and through the incredible progress made by the medical team at UMASS. That update is coming soon but today, I want to share with you what Alex & I have communicated with the entire team. It’s an important example of the “teamwork without territorialism” approach that we’ve taken – the same one that has led to the success I’ll catch you up on soon.

Nicky’s program, which I called a “hybrid Shared Living model,” includes a 30-hour per week staff person who assists the live-in provider and provides respite as needed. At the end of October, the person who had that position for the first year resigned. Nonotuck is diligently working to find a new person to fill the position – always looking for quality, not just a body.

The great news is that Nicky and his provider (I like “housemate” and “friend” better) are doing better than ever on their own with some backup staff filling in here and there. This situation would have been a crisis a year ago!

But we are worried as time goes on, and especially with the holidays approaching, that stress and lack of regular respite will begin taking its toll on both of them.

Back in our days of entitlements through the public schools, a decrease in staff would’ve been “their problem, not ours.” And we could take on this same attitude. After all, the agency is in charge of the program; that’s why we hired them. Legally, it is their responsibility to ensure that Nicky is safe and his program is maintained. But, this entire process has been so inclusive and the agencies involved have been so extraordinary in the collaboration among all of us – combined with our natural concern for Nicky’s welfare – we will not stand by and simply wish them luck. We are all in this together.

Here is the message we sent to the team this morning:

We’re all so excited that everything is going well at home with Nicky, but is still short-staffed (without the 30 hour position filled since resigned). Nonotuck is trying hard to fill the position, but even once it’s filled there will be several weeks of training necessary before the person is ready to manage and maintain the outstanding progress Ismail and the Nonotuck team are spearheading.

So Alex and I have reached out to Nonotuck and , and offered to take Nicky at any time over the next few weeks, to provide respite for and give us the chance to work on home skills. Nicky had a great weekend this past weekend; he spent the night with us Saturday the 23rd-Sunday the 24th, returning home at 1:00pm on Sunday (for his birthday).

The ability for us to do this is due to the entire team at HMEA and Nonotuck and UMASS collaborating to push for engagement, strategizing for consistency, and being supportive of those times over the past couple months when having Nicky at home has been very difficult. So thank you! – Alex and Cheryl

If we had not had the success (in teamwork) that we have had, I may have hesitated to offer this because I wouldn’t want the agencies involved to think we would “rescue them” any time there was a staff shortage. Truly, in some situations that may end up being a negative precedent. In our case, it didn’t even cross our mind. That’s the power of this continuing story, and why we are sharing it whenever we can.

Happy Thanksgiving to all!xmas2012alexnickycheryl

About Cheryl Ryan Chan

Autism Community Thought Leader & Change Agent. Find me at, learn about what I do at or contact me at
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