Bill to Help Sick Kids in NJ Moves Forward

Help could be on the way for New Jersey children with limited life expectancy or complex illnesses and their families. Today, a Senate committee approved a bill that would allow for the licensure of pediatric respite care facilities in the state.

The measure is sponsored in the Upper House by State Sen. Dick Codey (D-Essex/Morris) and is sponsored in the General Assembly by Dan Benson (D-Mercer/Middlesex), Upendra Chivukula (D-Somerset/Middlesex), Pam Lampitt (D-Camden/Burlington) and Tim Eustace (D-Bergen/Passaic).

“It’s a sad and tragic reality, but many families in New Jersey who have children with limited life expectancies or complex illnesses can become overwhelmed,” said Benson. “New Jersey lacks adequate support services to give respite for families responsible 24 hours per day for very sick children. We can change that for the benefit of the children and families alike.”

Under the legislation, facilities would create teams to help in providing treatment and care as well as supportive services to meet the physical, emotional, spiritual, social and economic needs of children and their families during illness, as well as during dying and bereavement.

“Community-based, comprehensive, family-centered pediatric respite care facilities in other states have enhanced the quality of life for very ill children and for their families,” said Chivukula. “Similar pediatric respite care facilities should be authorized to operate in this state to ensure that children and their families receive the best possible support.”

The bill defines ‘pediatric respite care facility’ as a facility licensed by the Department of Health that provides home-like care for two weeks or less of respite care, end-of-life care and/or medically necessary care for children up to age 21 with limited life expectancies or complex, life-limiting illnesses.