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State To Revise Emergency Contact Rules In "Danielle's Law"
By Dave Reynolds, Inclusion Daily Express
December 9, 2004

TRENTON, NEW JERSEY--The state's Division of Developmental Disabilities is revising its rules to better enforce the law that requires service providers to call 911 in an emergency.

Lawmakers passed "Danielle's Law" in November of 2003 in response to the death a year earlier of Danielle Gruskowski.

A resident of an Edison, New Jersey group home, 32-year-old Gruskowski had Rett syndrome, a condition similar to autism that mostly affects women. People with Rett syndrome typically cannot move or speak.

On the evening of November 4, 2002, as Gruskowski's body temperature climbed to a dangerous 105 degrees, staff gave her Tylenol and changed her wet bed linen. They drove her to a doctor's office the next morning, after she had stopped breathing; Gruskowski could not be resuscitated and was pronounced dead two hours later.

Gruskowski's family believes she would have survived if emergency medical personnel had been contacted when her fever started to climb.

The law named for Gruskowski requires anyone who works directly with people who have developmental disabilities or brain injuries to call 911 in a life-threatening situation. Penalties for failing to make a necessary call are $5,000 for the first incident, $10,000 for the second and $25,000 for the third.

Danielle's Law went into effect in April. This past summer, DDD proposed rules for enforcing it.

According to the Star-Ledger, Gruskowski's family and nearly a dozen elected officials have criticized the proposed rules, saying they would allow direct care workers to waste precious time deciding who should call 911. The Family Alliance to Prevent Abuse and Neglect held a protest outside the department's office building to bring attention to the problem. The Alliance also launched a petition to have the rules scrapped.

"The Proposed Rules have been cleverly crafted to absolve the providers and unions of the responsibility to call 911 in cases of life-threatening emergencies," the petition read.

The way they were written, the rules only required designated supervisors or medical personnel -- not direct care workers -- at the seven state-run institutions to call 911. Private facilities could choose who should make the call. Also, workers would not have to call 911 if they believed someone else had already done so.

"The purpose of Danielle's Law is to save the lives of persons with developmental disabilities or traumatic brain injury in a life-threatening emergency," Danielle's mother Diane told the Star-Ledger. "Minutes count in a life-threatening emergency. It could mean the difference between life and death for someone that cannot help themselves, like my daughter Danielle."

Gary Brown, spokesperson for DDD said, "We felt that some changes needed to be made in response to concerns raised."

Brown said officials are still deciding what changes would be made.

Related:
"Family Alliance to Prevent Abuse and Neglect"

http://www.thefamilyalliance.net
"Life-Threatening Emergencies -- Proposed New Rules" (New Jersey Department of Human Services)
http://www.thefamilyalliance.net/images/DaniellesLawAnnotatedRules.pdf
(PDF format requires free Adobe Acrobat Reader)

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