Early Planning, Collaboration for adulthood is KEY; the entire team needs to AGREE (part “A”)

Part 2(A) of  “22at20, Deconstructed.” Over the next 3 weeks we will address each of the key takeaways that we discuss during our presentation; collaboration, early planning, creative visions. We hope you are able to take these ideas and share them with your team members, and create your own successful transition!

The concept of “early planning” is not just a smart idea; it’s the law.  In Massachusetts, transition planning is supposed to start at age 14.  Read the DESE rules here.

“Supposed” is the operative word here.  Often, it doesn’t happen.  Then again, often it does – but when it does, parent report to me that the discussion is either simply a commitment to a Chapter 688 referral to an adult agency and that’s it; or a largely school-led focus on academic and inclusion goals that work within the classroom setting.

Many children are not going to be in classroom settings after 22, unless they are college-bound.  Nicky sure was not, that we knew.  We had a vision for what we wanted, in our heads.  How we were going to make it all happen,  we had very little knowledge to provide to the team.  Yes, we are the parents.  Yes, we have a vision.  But we are not the experts in this kind of stuff.  And, frankly, we were looking at a team of educators, not adult service providers nor even DDS when we first approached the SPED Director – with all due respect, that wasn’t good enough.

So we started researching and visiting and communicating with provider agencies.  A lot of the research was done by reaching out to our community of parents and caregivers who had already transitioned – ‘give us the good, the bad and the ugly.’  Our driving incentive for doing this was the fact that Nicky is really, really tough behaviorally; whomever we considered as a provider needed to have a really strong clinical team and experience with guys like Nicky.

You may not be in the same situation with regard to the clinical needs we had to consider – but, you still need to find a good match.  Not all providers share the same approaches, philosophies, resource levels, oversight, etc.  Some have more individuals with severe needs and others have more experience with folks who are somewhat more independent but have other support needs…the list goes on, which is why early research is key – and up to you, the parents or guardians.  Don’t leave this up to the schools – it’s not their call.  They are not invested past 22, not even part of the team.  So the schools need to make your vision (or your child’s vision) the focus more than ever before!

We went with 2 different providers; one for the residential setting and one for the day setting.  Not exactly ideal, because communication between 2 different providers is difficult at best to sustain…but, in our case, we just couldn’t find one that had the key strengths we were looking for in one.  Our day provider excels in day programming and clinical expertise.  Our residential provider has a philosophy and approach we love, and is signficantly smaller in scope (they only do residential supports).  Again, it was the communication between them that we knew would have to be a huge piece of the next 2 years before 22.  That is, if we could get them to the table that early!

We expected their participation this early to be a problem.  In fact, they were very excited about it (another thing we recommend that you ask when researching providers – are they willing to come to the table early, and be a part of the long-term planning?).  Based on the initial discussions with us and (more importantly) with the SPED Director when he reached out to them, they knew that preparing for Nicky was going to take a while, if it was to be done well.  They committed to monthly meetings with the team.  They were always there, sometimes with 8 people, sometimes with 2 – depended on the agenda items.  But they were “all in.”  That was HUGE.

Ok, so recognition of early planning – with the right people at the table – had begun.  Now comes working together… collaboration!  Oh, boy, let’s see how this goes…let the anxiety kick in!

(next blog post will take it from here…I guess we’ll call it part 2 “B”)


About Cheryl Ryan Chan

Autism Community Thought Leader & Change Agent. Find me at about.me/cherylryanchan, learn about what I do at www.cherylryanchan.com or contact me at cherylryanchan@gmail.com
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