One 68+'r, a computer and an internet connection . . . .
It is amazing what can be accomplished from a computer in your home! Things that would have taken years to get together 20 years ago can now be done in days. . . .
As many of you know, I am active in disability advocacy.
Currently, there are hundreds of thousands of individuals with developmental disabilities, some with profound disabilities and behavioral challenges, who leave the school system at age 21 into a world of nothingness and waiting.
There are parents in their 60's, 70's and 80's - some who have suffered severe debilitating conditions themselves, who are also providing daily care to their own child(ren).
It is a national disgrace. One which most people haven't a clue about. Texas alone has over 90,000 folks on their waitlist.
It occurred to me that this is a national issue, yet no one group is approaching it from a national perspective. Groups are battling in many states (mostly unsuccessfully), but no one has put together a comprehensive national approach.
On January 19, 2008, I started a Yahoo Groups listserv entitled NOEWAIT - the National Association to End the Waitlist through Advocacy, Information and Transformation.
I announced it through the internet using various listservs and email addresses I have collected. I asked each group to pass it on to other groups, asking them to pass it on on to more, etc.
We've been around about 6 weeks now. We have 114 members from across the country, and a highly active Organization Committee.
We have developed a Mission Statement, have monthly telephone conferences, etc. We submitted our first grant today for $10,000 of start up funds.
Here is an update I just posted to the group.
UPDATE - TELECONFERENCE, GRANT, WEB PAGE, EMAIL ADDRESS, ETC.
The NOEWAITORGANIZE COMMITTEE has been hard at work.
National Organization to end the Waitlist through Advocacy, Information and Transformation
* We now have:
* 16 people actively working on the NOEWAITORGANIZE committee
Project Director, CO
Bronfeld, Parent, IL
Sara Cohen, Parent
Lori Fahey, Parent
Denver C. Fox
Deb Ham, Parent
Parent, Careco, MD
* We have submitted a grant for several thousand dollars
* We have an email address: email@example.com
* We have a web page: http://www.noewait.net
* We have letterhead stationery
* We have collected almost 400 email addresses of organizations across the country.
* We are recruiting for state representatives
* We will be having our monthly teleconference March 10th.
Items for discussion include:
From our Grant Application:
Goals, Objectives and Timelines
During the coming year of our start-up phase, the organizing committee has identified the following goals, objectives, and timelines we will achieve:
Goal 1: Develop the organization’s message & image – Within 3 months
Develop a web site
Create a brochure and collateral materials to send to potential members
Goal 2: Build a large grass-roots membership across the country - Ongoing
Identify at least two representatives of organizations in each state which are serving this population or who have already begun a state-wide Wait List Coalition.
Spread our mission though our website, email messages and printed materials
Contact each identified organization by mail and/or email
Regularly collect information about our membership to ensure diversity
Locate and recruit members from communities we have identified as being under-represented
Conduct Kick-Off event of State wide organizers to plan consistent strategies and objectives across the country
Goal 3: Document the need & potential solutions – Now until end of 2008
Gather Wait List data for every state
Obtain information about what has been done in each state to address the Wait List
Produce a Position Paper outlining the problem and best practices
Goal 4: Build organizational capacity & independence – Now until end of grant period
Obtain grants and individual donations
Organize sub-committee structures
Identify potential board members who will be part of 501(c) 3 start-up
Apply for 501(c) 3 status
Set up operations
Goal 5: Reach public policy makers – Beginning in late 2008
Engage membership in letter-writing campaigns and visits with policy-makers
Develop contact databases
Goal 6: Raise public awareness & activate people – Beginning in late 2008
Develop videos for YouTube, PSA’s, and other messaging
Working through our partnering organizations, send messages to their memberships
FUNCTIONS OF NOEWAIT -MUCH, MUCH MORE THAN LOBBYING
It appears to me that we have a much broader function for NOEWAIT than lobbying.
This would include:
1. Gathering information regarding the extent of waiting lists throughout the country, states, and other political subdivisions..
2. Making that information available to the public, policy makers, government officials and others as a resource.
3. Providing education to the public, governmental officials, legislators and others regarding the wait list utilizing all available media and techniques. Remember that education and lobbying are not the same thing.
4. Coordinating and interacting with other agencies interested in ending the wait list.
5. Coordinating and interacting with various governmental bodies.
6. Providing expertise to legislators and others in drafting legislation and policies to end the wait list.
7. Actively pursuing legislation, meeting with legislators, etc.
We are in the preliminary stages of planning a national conference.
* Fund raising has started.
Here is our Mission Statement
MISSION STATEMENT FOR NOEWAIT (THE NATIONAL ORGANIZATION TO END THE WAIT LIST THROUGH ADVOCACY, INFORMATION AND TRANSFORMATION)
Across the nation, people with intellectual and developmental disabilities wait years for services and supports and can not move freely from state to state or community to community.
There must be adequate funding for lifetime services and supports needed by our most vulnerable family members, without gaps or delays.
Funding must be available in all states, portable across and within states and promote self-determination for the individual with the disability, their families and legal guardians.
To unite the efforts of families, providers, government agencies, advocacy groups and citizens to change laws and policies across the country and eliminate waiting lists for people with intellectual and developmental disabilities.
We can, we will, we must end the wait - TOGETHER
And I have met only one of the Organizing Committee folks!
It is truly an amazing age of communication.