Letter on Proposed Danielle's Law Changes

James M. Evanochko
Administrative Practice Officer
Division of Developmental Disabilities
P.O. Box 726
Trenton, NJ 08625-0726

10/29/04

Dear Mr. Evanochko:

    I am a parent and advocate.  My daughter Stephanie has end stage renal disease and autism.  I am the NJ Coordinator for Family Voices, national grassroots network speaking on behalf of children with special healthcare needs.  I am writing regarding the proposed Danielle's Law, requiring staff to call 911 in an emergency.  It appears that if the current proposals were followed, Danielle still would have died.  There needs to be a uniform state standard and one procedure for all facilities to follow, public or private.  Direct care staff should follow state law, not individual facility procedures.  Direct care staff should have the authority to call 911 without having to waste time finding a supervisor or verifying if someone else called.  In an emergency, minutes can be the difference between life and death.  If someone else called, itís better to have two calls than none.  Also 911 operators have procedures to determine duplicate calls.  The original wording of the bill, rather than that proposed revisions, had the necessary protections in place for people with developmental disabilities.  I urge the Dept. of Human Services to reconsider the implications of changing the law from its original intent.  By only including providers in the discussion on the revisions, the department has left out the families, the very people itís supposed to be serving.

 

Sincerely,

Lauren Agoratus M.A.

NJ Coordinator-Family Voices

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