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

Renee Beauregard

Parent, XXYY

Project Director, CO



Shirley Berryhill

Parent, GA



Ellen Garber

Bronfeld, Parent, IL



Sara Cohen, Parent
GA



Maureen Devaney

Parent, PA



Lori Fahey, Parent

FL



Evan Farrar

Advocate, FL



Denver C. Fox

Parent, PAD-CO
CO



Pedro Geraldino,

Parent, PA



Deb Ham, Parent
CO



John Hall

Volunteer, FL



Lora Langley
Parent/Advocate

GA



Beth Merida

Advocate, LA

Sheila Stasko,

Parent/advocate

PA



Marsha Thompson

Parent, Careco, MD


Deborah Weston

Parent, NE

* We have submitted a grant for several thousand dollars

* We have an email address: noewait@noewait.net

* We have a web page: https://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

Objectives:

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

Objectives:

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

Objectives:

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

Objectives:

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)

BECAUSE

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.

BECAUSE

There must be adequate funding for lifetime services and supports needed by our most vulnerable family members, without gaps or delays.

BECAUSE

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.

WE PLEDGE

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.

DnvrFox

We could all take a lesson from you! Should a passion be ignited - take action. Don't wait for someone else to do it or it will not get done.

I have a close friend who had a stroke. We have looked at recumbent trikes for him, but the cost and storage problems prevent us from moving forward. I'm at a loss for any resources that would or even could provide him with the exercise and recreation that would benefit him so much.

This isn't to even address his long term needs as he somehow gets by on SSI and now no rent assistance.

Whatever happened to President Bush's Faith Based Initiatives? Why don't churches across America join hands with an organization like yours and step up?

I have more questions than answers, but salute your effort.

Good luck.

Don't get me started on churches and their interactions with individuals with disabilities. The record is generally not good. In fact, it is abysmal.

Through congressional pressure, churches purposely exempted themselves from the Americans with Disabilities Act.

My own church just built a brand new sanctuary seating 650 folks with only TWO wheelchair cutouts. If this was a movie theater, I would be suing them, as there should be at least 7 cutouts under the ADA. Etc, etc., etc., etc., etc.

Some states/communities have adopted the ADA in their building codes. Not Colorado nor Parker.

I won't even get into "program accessibility," inclusive - not segregated - classes (or no classes) for individuals with disabilities of all kinds or outreach into the community.

I admire how some people are making real differences through their perseverance.

Just yesterday I noticed an ad in a business magazine from a group that was appealing to large corporations to make empty seats on their corporate jets available to cancer victims who needed to seek treatment at distance hospitals. There are thousands of corporate jet flights a day, and many of them have empty seats.

This group asks companies to let them know about flights so they can coordinate with cancer patients and families. So far they've gotten 56 companies to sign up.

This effort really makes a lot of sense. But it wouldn't have happened if someone hadn't taken it on as a project.

"Be the change"

Good going!

Dnvr, I just forwarded your message to a friend of mine on the east coast with a 28 year old mentally disabled daughter. Thank you.

Seems like a post on this thread has disappeared.

Anyway, good going DnvrFox

Good Job!

Update: You now have 115 members.

It's a pleasure to see the internet and technology in general used for good purposes. Nice going.

I think Pastor Bob just left us for the second time. Earlier this morning he had a long post in this thread. What happened?