Making Change

People often ask, what is CLBC? 

“Community Living BC (CLBC) is a provincial Crown corporation that funds supports for people 19 years or older who have a developmental disability.” https://www.communitylivingbc.ca/

We recently had to transition Luke from Youth (Autism Funding) to Adult (CLBC Funding). While the whole process was overwhelming and daunting, we did have some amazing support people. We had a great “Navigator” who oversaw the transition under the Ministry of Children & Families umbrella; and she liaised with our new CLBC support “Facilitator.” We also had an amazing rep from VELA Canada to hand-hold us through it all.  It took a couple years, but we made the transition successfully. 

[We have written a blog about this transition, and Luke’s story was featured in the CLBC e-newsletter. He was also interviewed by VELA Canada, and their story can be read here.]

But this story is not about that. 

It’s about Luke’s powerful advocacy for himself and others like him. 

In the spring of 2024 we approached CLBC for funding specific to Luke’s letterboard and communication, to help pay for Communication Regulation Practitioners ($75-100/hour).

We were denied.

It was disheartening.

It was frustrating. 

We decided to reach out to our amazing community, and within weeks we had raised $10,595.00! Our spirits were renewed, and Luke sent out a Thank You to everyone who donated. This money kept us afloat while we contemplated next steps. 

One of my clients called me to ask about our situation, and put me in touch with a friend of his who had a similar yet more devastating story (his autistic son died from an epileptic seizure). I called this friend and we commiserated together on the phone, as we shared stories. He asked how he could help, and I said… how do I go to the highest power in CLBC to get Luke’s story heard; someone who actually had actionable power? He replied, “That’s easy, here’s the email address of the CEO of CLBC” (they were old business friends/colleagues). 

I sent an email. 

The CEO replied. 

We set up a meeting!

In June 2024, we met online… Luke, Brittney (Vocal Vista, Kamloops first Communication and Regulation Practitioner—CRP), and me. 

I was a bit of a nervous wreck. 

Luke said, “I got this, mom.”

I did not know what to expect, but we were kind of in defense mode. 

We didn’t need to be, at all.

Luke and the CEO had the most incredible conversation. 

He was amazing. Soft spoken, kind. He really listened.

He was in awe of Luke’s story, and of Luke. 

CLBC Funding did not have a funding category for “Communication.” Funding is typically given to support “Community Inclusion” and “Employment.”

He knew immediately that communication was a necessity in order to experience “Community Inclusion” or to have any hope for “Employment.”

The two of them had the most professional and compassionate talk.

Luke’s best remembered statement of that meeting was...

“My voice should not be a financial burden to my family.”

Mic drop. 

We left it all in his hands, and, long story short, by September we were granted “Communication” funding for one year. Which has since been extended to a second year. 

Beyond thrilled.

Unbelievably grateful!

About a year later, the CEO had a team member reach out to us to see if we would like to share our story to the CLBC Board of Governors at their next meeting. Arrangements were made to present Luke’s story on Thursday morning, September 18, 2025 at 9:10am. 

Luke opened with a pre-recorded statement on his iPad:

“I am very appreciative of the funding. 

Getting to decide what I want and need in life is a blessing and something I never thought I would attain. 

Having a reliable way to communicate has allowed me to achieve my goals in life and develop more independence. 

Communication is a human right. 

Without CLBC FUNDING I would not have access to the communication I deserve. 

Thank you for this opportunity and for listening.”

We then shared our PowerPoint presentation; a collaboration, but the majority of words were written by Luke one-letter-at-a-time. The beginning included a history of Luke’s story, some letterboard information and resources, and a call for change and action, but the end was about all the amazing things Luke was able to accomplish because of the CLBC funding (see slides). 

Afterwards, there were a couple of great questions and comments, all kind and inquisitive. It was all over within 45 minutes. 

Despite Luke’s higher-than-ever anxiety, at one point he was able to answer a question on the letterboard about his thoughts about the eye-gaze technology (HoloGaze)... “It is a work in progress, but incredible.” These few words allowed the Board to see Luke spell in real time. Once you see Luke spell “in-person” there is no denying that he is the author of his own words.

We’ll close this blog post with the encouraging words emailed shortly after from a Board member:

“Your presentation was very amazing, and I don't throw that word around. We hear a lot of presentations at our Board meetings, but this has been my favourite in my three plus years on the board. You are a gifted young man, and I wish you incredible success. You should be very proud of your accomplishments. I am going to continue following you on your website and Facebook, as I can't wait to see what you accomplish next. Good luck with everything and I hope your dream of getting letterboards to elementary schools comes true.”

We do, too, Luke. 

Keep advocating for change!

P.S. If anyone would like Luke to share the full presentation to an organization, school or professional development session, please email Luke at verhoeffluke@gmail.com