Re: Fw: Fw: Arc and Alden North Cited in Another Death

January 12, 2011

Ellen, , Terrie and all,

I guess I'll wade into this discussion, too. I agree with Terrie that one of the

unique and wonderful things about IPADD is that we can speak our minds, freely,

so long as we do it with respect for one another. I also happen to agree with

Terrie and others that states at the top of the Braddock report heap all have

higher personal state income tax rates than Illinois. I'm not convinced that

Gov. Quinn et all are planning to devote one dime of any increase to moving

people off the waiting lists for home and community services, though, and for

that reason I'm troubled by calls from disability advocates to support this no

matter what.

All that said, Pam, you are also definitely not alone in your feelings toward

the effectiveness of our 'establishment advocates', I myself share your

misgivings and hear from many people who question how well families are being

represented by the ARC and others when so many dues-paying ARC members are also

union members. I recall several years ago, when a new National ARC President

was coming on board, she wrote about being troubled by a perceived conflict of

interest with some state ARC chapters whose memberships had swung, in her view,

a little too far over to the provider side and were walking a fine line between

advocating for individual/family priorities versus those of the service

providers. So you're not expressing anything new and I doubt it's even a

concern limited to Illinois. I'd guess many states' ARC chapters struggle with

maintaining this balance between provider members and individual family members.

So, , please understand that frustrations run deep among family members in

the daily trenches of caregiving, with or without public funding for help in the

home, let alone for housing. And as a Board member of the ARC of IL, I'm

certain you and your colleagues want the best direction, leadership and strategy

to overcome the many challenges our state faces. We do respect your perspective;

please also respect ours.

I say, Godspeed to all of us. And let's please keep listening and learning from

one another, because each one of us has gifts, talents and insights that have

value.

Laurie

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