"THOUGHTS ON PURE ADVOCACY"

Is there ANY advocacy group out there that is not compromised?

Compromise comes in many forms:

1. Chummy-chummy friendships with folks about whom we advocate, be they CCB staff and Boards, DDD personnel, etc.

2. Financial ties - i.e., a recent example where, because of the potential to lose grant funding - or not get pending funding grants approved - several major advocacy organizations stepped back entirely from efforts which we hoped might gain a significant amount of funding from a major potential revision - like $1.5 billion dollars - of a funding source. This was an effort we tried to organize for ALL advocacy groups in Colorado, and fell flat on our faces against the mighty $$dollar$$ that some were afraid they might lose.

3. Infiltration. We know that there are folks on PAD-CO who provide a direct pipeline to CCBs, DDD and other organizations of what is said in PAD-CO, which is one reason the Issues-PAD-CO was formed of folks that were reliable and could keep a secret. We don't know who these folks are, as PAD-CO has no way of finding out. But we have been told directly by one CCB Executive Director that he knows everything written on PAD-CO. These infiltrators passing this information along ARE parents.

4. Power and recognition - the need some folks have for power and recognition can compromise the advocacy efforts of any organization.  The power others have over someone or an organization because of the control they have over resources, waiting list position, and other services and items that are vital to an individual with a disability and/or their family.

5. "Compromise" - certain advocacy organizations feel that their role is to "compromise" - and actively state that to others. My thought is that this is NEVER a position to take, especially where laws support a position, or the position is vital to the health and well-being of our families and our kids - i.e., the recent debacle regarding the now-going-away Home Care Allowance for those on the SLS waiver, which was lost partly through "compromise" on the part of certain advocacy organizations.

6. And I am sure you can think of other methods of compromising an advocacy organization

So, is it possible to have a "pure" advocacy organization, and, if so, how would it advocate? One which really speaks "truth to power" when needed, can formulate positions, speak in some fashion to legislators, and influence elected and department officials.

How can busy and tired parents do something like this?

Is there truly a need?

In my mind, this organization needs, somehow, to be an organization entirely free of all of the above characteristics. To my mind, there are NO disability advocacy organizations in CO that meet the above criteria. If it is funded, the funding needs to come from within the organization or from a source that will have absolutely no influence on the policies of the organization.