Please contact your Congresspersons (there is a link on the left for your U.S. Senate and House member look-up) and ask them to cosponsor these bills. They are the Federal version of a NJ law called Danielle's Law.
It could save the life of one of our kids if they ever end up in a group or other facility.
"Danielle's Law requires that staff serving individuals with disabilities call "911" in the event of a life threatening health emergency. Family Alliance members Diane Gruskowski (Danielle's mother) and Robin Turner (Danielle's aunt) worked tirelessly to secure passage of this important bill, which was signed into law by Governor McGreevey on October 26, 2003. Danielle's Law was named after Danielle Gruskowski, a 32-year old woman with Rett Syndrome, who died on November 5, 2002 when staff at her Edison, NJ group home failed to call "911" in response to a high fever she had developed the previous evening."
http://www.thefamilyalliance.net/
S.1420 Title: A bill to amend title XIX of the Social Security Act to require staff working with developmentally disabled individuals to call emergency services in the event of a life-threatening situation. Sponsor: Rep Holt, Rush D. [NJ-12] (introduced 5/17/2007)
Referred to House committee. Status: Referred to the House Committee on Energy and Commerce.
OFFICIAL TITLE AS INTRODUCED: To amend title XIX of the Social Security Act to require staff working with developmentally disabled individuals to call emergency services in the event of a life-threatening situation.
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"For the Love of Danielle"
With the unanimous passage of Danielle’s Law on the final day of June 2003, the New Jersey Legislature sent the unequivocal message that it is tired of seeing people with disabilities die due to inadequate medical treatment. A concurrent Legislative Resolution thanking the parents and families who continue to advocate for reform gave hope that Legislators are also tired of seeing people with disabilities killed, injured, and traumatized due to dangerous techniques masquerading as "treatment." The Family Alliance to Stop Abuse & Neglect
My precious niece Danielle, was the inspiration for Danielle's Law. Four years ago, on October 26, 2003, hundreds gathered as Governor James E. McGreevey signed Danielle's Law in a very moving ceremony in her hometown of Carteret, New Jersey.
McGreevey said: "Today, in memory of Danielle Gruskowski we are establishing Danielle's Law. A law that will serve our most vulnerable -- speaking loudly for those who can not always speak for themselves".
Danielle Gruskowski, a beautiful 32-year old woman, who was non-verbal, non-ambulatory, and at a very early age diagnosed with Rett Syndrome, a neurological disorder, that affects speech and motor movements, died because of the facilities staff failure to call 9-1-1 telephone emergency services when Danielle needed urgent medical attention.
Danielle was experiencing difficulty breathing for over 14-hours and a reported temperature of 105 degrees on the morning of her death. During these final 14-hours, there were so many times when this runaway train carrying Danielle to her death could have been stopped by a simple phone call to 9-1-1. Yes, there were so many times that this train could have been derailed, but the call was never made to save her precious life.
Danielle's tragic death teaches us several crucial lessons about the importance of making a 9-1-1 call when facility staff caring for developmentally disabled people are faced with life threatening situations.
Before Danielle's Law, facility staff were failing to make these calls, even in dire life threatening emergencies and lives were being lost. Why? Perhaps it was the fear that their supervisor will be angry or find them to have exceeded their authority. Danielle's Law takes the pressure off facility staff by requiring that they make that call to 9-1-1. Also, facility staff all to often, lack sufficient knowledge of heath care and make inadequate decisions when faced with a very sick individual. An average facility staff person - many of them with a high school education or G.E.D., or even LPN and associates degree - should not be making independent assessments in critical situations. In fact, it is unfair to place them in that situation when they are outside the range of their knowledge and ability.
Many children and adults with serious disabilities often can not speak for themselves. Their speech may be halting and difficult to understand. They can not draw attention to and explain their symptoms. Parents worried constantly about how facility staff will respond to their non-verbal sons and daughters who can not advocate for themselves.
Danielle's Law now assures families that facility staff err on the side of safety when it comes to health care decisions. Danielle's Law helps end the second-class health care that so many individuals with disabilities experience in the State of New Jersey. Danielle's Law sends a strong message about the need to get immediate medical attention for any problem that looks serious, just as we would for a non-disabled person.
On May 17, 2007, Congressman Rush Holt and Senator Robert Menendez introduced New Jersey's Danielle's Law in Congress and the senate in Washinbgton. Holt stated, ""We must do everything we can to protect our most vulnerable members of society. Passage of this bill would help other developmentally disabled Americans avoid suffering the fate of Danielle Gruskowski."
Danielle's mother Diane and I often referred to Danielle as "an angel sent by God". We are forever grateful to everyone who has made Danielle's Law a reality in New Jersey. Diane and I know that in Danielle's memory, Danielle's Law will protect children who are voiceless and helpless where ever they may be. These seemingly small steps will result in great strides towards the wellbeing and care for people with developmental disabilities.
As voiceless as Danielle was, she has brought a community together, and perhaps the nation. Danielle has been and continues to be an inspiration to many people across the country. As you can see, we have been truly blessed with a beautiful, loving child named Danielle.
All this change comes too late for Danielle, but perhaps in time for everyone else.
Robin - Danielle's Aunt, Guardian, & Her Advocate
"To the world you might just be one person, but to one person you might just be the world".
Greetings.
Danielle, the Gruskowski family's angel, can count on my support. I will write to my congressman and senators this weekend.
Take care.
Ed Rosenberg
www.everyoneisincluded.us
Daniel is an Angel sent from God. So is Robin Turner and Ms. Gruskowski are also Angels doing Gods work to help all of our special children who are gifts from God. What a difference they have made, they have moved mountains. God is holding Danielle and both looking down at their amazing work. Thank you Robin and Diane...may God Bless You.
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