Brain Injury Public Policy Advocacy Group


Brain Injury Public Policy Advocacy Group

Location: Meet monthly on goto meetings ask for your invite
Members: 87
Latest Activity: Apr 11

Disability Rights

Penny Condoll, Craig Sicilia, and Mark Stroh started a conversation the other day that we would now like to invite others to join.  We were talking about ways to increase the influence of people with disabilities with the Washington Legislature and the entities that are charged with providing supports and services to people with disabilities.  We were noting a couple of things.  First, several disability communities seem to be significantly underrepresented in Olympia when policies and funding levels are being decided.  Second, we need to find better ways of holding service and support providers accountable.  We are thinking it is not enough just have the opportunity to speak.  We want the participation of people with disabilities to make a difference in the way supports and services are provided.

Because these three believe so strongly in individuals being in charge of their advocacy direction ("nothing about us without us"), there are many paths this advocacy committee may take.  A couple initial ideas include:

·       Focus on increasing participation in the mental health and traumatic brain injury communities – two groups that could need to dramatically increase their presence in Olympia.

·       Focus on increasing participation and cross collaboration in disability communities that have similar needs, such as cognitive, neurological, and mental health  which we feel are also underrepresented. 

·       Create an open cross disability focus on specific outcomes.  An example might be a committee that  has a special focus of increasing chore hours for undeserved disability communities or improving transportation services for individuals with disabilities. 

We decided that that was a decision for a larger group. We are inviting you as you have demonstrated a desire to make a difference in the support and services of people whose lives are affected by a disability. 

So we decided to expand our group somewhat and continue the conversation.  We’re holding a conference call for that purpose on October 7 from 11:00 to 1:00 for that purpose.  We hope you will join us.  



·        Introductions of those participating on the call

·        The purpose of the call (Penny and/or Craig)

·        Discussion: What direction do we want this advocacy effort to take?

·        Discussion: Who do we want to be a part of this effort?

·        Discussion: Next Steps


Discussion Forum

Legal help 2 Replies

Hello everyone!I could use some assistance.My TBI and partial paralysis was caused by a medication that I was taking; my Physical /therapists recommended that I sue for damages, lost job, lost home,…Continue

Started by Becca Dixon. Last reply by Anthony Castelli Nov 9, 2013.

What do we need most? "Essential Services" - post rehab 9 Replies

 For most of us when we arrive home after rehab,(if we were lucky enough to have been able to receive rehab services)  we find our selves left to figure it out on our own.What types…Continue

Started by Marih Alyn-Claire. Last reply by Barbara Castlow Sep 4, 2012.

Worker comp

I was hurt performing worker related duties.  June 3 04.  I was not tested or treated.  An attorney reading my injury accident report asked one ?.  Were u sent to a neurologist.  I wasn't.   It was…Continue

Started by deborah clonch-elliott Mar 16, 2012.

Flying with a brain injury 5 Replies

I recently learned the very hard way about some details regarding flying when you have an invisible disability. Every airline in the US interprets the law differently, but let me pass on what I have…Continue

Tags: legislation, disabled, travelers', rights, federal

Started by Cheryl Green. Last reply by Cheryl Green Jan 27, 2012.

Comment Wall


You need to be a member of Brain Injury Public Policy Advocacy Group to add comments!

Comment by john on April 11, 2018 at 10:37am

 TBI ... you only know it if you live it

Comment by Becca Dixon on January 26, 2014 at 3:15pm

Hi Everyone! Hope you are well, please check out my blog and comment Thanks!

Comment by Queenie Alexander on June 11, 2012 at 8:16pm

Hi all,

Thanks for inviting me to join this group.  I am currently focused on writing a book about my partner's brain injury because I think that it covers areas not previously covered, notably, the kinds of difficulties a software engineer with massive brain injury meets trying to use computers again.  Plus, my experience as a psych nurse and as a sociologist are helpful in interpreting what happens from the first day in hospital to rehab and after.  So, just letting you know that I am pretty busy, but I am interested in this area and will try to contribute later.  Also I am Australian, but I think that we still face much in common,


Comment by Shonti Ganguli on December 19, 2011 at 5:34am

Yes we need a voice.  And together we have a better chance of being heard.  Creating new pathways that work for us and having society give us the opportunity to work within our capacity.  And to understand our individual needs for down time.  I am hoping to help us be heard.

Comment by Pablo on December 17, 2011 at 9:37am

when is the next meeting

Comment by Goth Girl on November 4, 2011 at 3:48pm
you are an amazing man
Comment by Rodney Barnes on October 23, 2011 at 12:35pm
Hey everyone! Just to give you some info about me, I survived a major TBI, coma, and had to relearn everything over again when I was 21... About 18 years after my accident I wrote, published, and built a website PLEASE, check out my website and become a member and start discussions on the LINK "SharingYourMiracle." THANKS Craig for all your doing brother..... Take care everyone, Peace. Rodney Lee
Comment by Jon on October 23, 2011 at 9:52am

we have lots to talk about and to fight for we need change


Comment by Ruth on October 15, 2011 at 8:46am
what a great group to bring change
Comment by Carol on October 14, 2011 at 7:44am
in the tough times coming we need to figure out what we need most

Members (87)


Latest Activity

Hillbilly replied to Hillbilly's discussion I can't get chat to work!
"Under blogs hit chat, then on the left under the red TBINETWORK enter the main room there"
Oct 18
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john replied to Hillbilly's discussion I can't get chat to work!
"... and where do I find this ‘main room’ tab ?"
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Hillbilly replied to Hillbilly's discussion I can't get chat to work!
"Hello Donna, We need to click main room to enter chat.  I always try to stop in at 2p and 9:30p est.  It doesn't show chatters in the room so be sure to say something. See ya there! Hillbilly"
Oct 16
john and Donna R are now friends
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Donna R replied to Hillbilly's discussion I can't get chat to work!
"Hi. wow, have not been here in a while. It's actually confusing and difficult for me. when I log in, chat comes up by itself saying "groups" or also "main room." I searched for your name and could not find you. maybe…"
Oct 16
Donna R updated their profile
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