Legislation Assembly Democrats Daniel R. Benson, Upendra Chivukula, Pamela R. Lampitt and Tim Eustace sponsored to authorize the creation of comprehensive care facilities to serve children with limited life expectancy or complex illnesses has been signed into law.
The new law (A-3558) allows for the licensure of pediatric respite care facilities in the state to provide care and support for terminally-ill children and their families.
“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 (D-Mercer/Middlesex). “New Jersey lacks adequate support services to give respite for families responsible 24 hours per day for very sick children. We are changing that for the benefit of the children and families alike.”
“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 (D-Somerset/Middlesex). “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.”
“Giving our families – and thus their children – the best support possible in these often tragic circumstances is the right thing to do,” said Lampitt (D-Camden/Burlington). “It’s worked elsewhere and there’s no reason New Jersey can’t do the same.”
“In such difficult circumstances, families can feel overburdened, and that, in turn, can negatively impact the care received by these children who deserve our very best,” said Eustace (D-Bergen/Passaic). “If we can improve the quality of life of these families with this simple step in the right direction, then we should do it.”
The law defines “pediatric respite care facility” to mean a facility licensed by the Department of Health that provides home-like care in a facility for two weeks or less of respite care, or as necessary for end-of-life care or as medically necessary for children up to age 21 with limited life expectancies or complex, life-limiting illnesses and support for their families.
The facilities would also employ an interdisciplinary team to assist in providing curative treatment when possible, palliative care, and 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 if no cure is attained.
The law authorizes the Commissioner of Health to establish by regulation the standards for operation of these facilities and the requirements of applicants seeking licensure to operate them. The requirements are to include, but are not limited to, criminal history record background checks of each staff member and facility administrator, reasonable fees for the issuance or renewal of licenses, and standards and policies regarding the core services to be provided, professional personnel requirements, standards of patient care, and administration of the facility.