[blindkid] Fervor

[Deborah Kent Stein]

Dear Lalena,

I am always on the lookout for useful articles relevant to families of kids 
with additional disabilities for Future Reflections.  Please write to me off 
list, and let's exchange ideas about good topics to cover.  Perhaps you can 
write an article drawing upon your own experiences.  I'll look forward to 
hearing from you.

Debbie Stein

Future Reflections
dkent5817 at att.net



-----Original Message----- 
From: Lalena Fayrevia blindkid
Sent: Wednesday, October 01, 2014 8:57 PM
To: Carlton Anne Cook Walker
Cc: blindkid
Subject: Re: [blindkid] Fervor

Carlton
The point of fervor is certainly to ignite a moment of action. Once that 
moment has happened, fervor changes to ensure that the fire doesn't go cold 
and to hold leadership accountable. Having continued to read the list, I 
didn't see any actions that have been taken, transparency or consensus 
building doesn't seem to be of value.

Convention is not approaching, it is next July, 9 months away! In the 
meantime myself and countless other families with children who have severe 
developmental delays and are also blind continue to survive each day. We 
focus on that day and not a 4 day conference 9 months from now that many of 
us can't afford to go to and if we do child care is incapable of 
accommodating our children. Even if no particular decisions have been made 
at least offer transparency and lift up some of the initial ideas so we know 
what's happening.

I did seek support and from several I received it but from many others I was 
blamed for not being more involved with the NOPBC and blamed for not being 
able to form my own subdivision advocacy group. So I appreciate your 
encouragement but it feels quite hallow.

Perhaps 9 months from now when convention comes this will all change. In the 
meantime, the status quo will remain.

If anyone actually decides to do anything before the magical 4 days in July, 
please do let me know.

Lalena

Sent from myMail for iOS
>
>Tuesday, September 30, 2014, 5:54 AM -0700 from Carlton Anne Cook Walker 
><attorneywalker at gmail.com>:
>Lalena,
>I am sorry that you have left the email list. Fervor, while it can be 
>helpful to get things started, rarely succeeds in implementing meaningful, 
>long-laying change. This, l
>I am pleased that the fervor has died down and that actual action if being 
>taken.
>Please know that discussions are ongoing and plans are being made. Not only 
>does the NOPBC, a proud division of the National Federation of the Blind, 
>intend to continue our long-standing commitment to all blind children, we 
>are actively exploring options to increase our offerings to blind children 
>with multiple disabilities and their families.
>As Convention approaches (it is now 9 months away) more information will be 
>available. I invite ask patents of all blind children to seek support from 
>the NFB and the NOPBC and look for ways to share our collective resources 
>with others.
>
>Thank you,
>Carlton
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