Legislation sponsored by Assembly Democrats Gabriela Mosquera, Paul Moriarty, Raj Mukherji, Carmelo G. Garcia and Pamela Lampitt to help prepare parents to care for a child with Down syndrome was signed into law on Monday.
“For expectant parents, receiving any type of medical diagnosis about an unborn child can be overwhelming,” said Mosquera (D-Camden/Gloucester). “By arming parents with extensive information on Down syndrome, hopefully we can prepare them for any unexpected challenges that lie ahead or any inherent learning curves they might face. Knowing they are not alone and that there are many resources out there can make all the difference in helping them care for their child.”
The law (A-3233) requires the state Department of Health to make available to any person who renders prenatal care, postnatal care or genetic counseling to parents who receive a prenatal or postnatal diagnosis of Down syndrome the following via its website:
1) up-to-date, evidence-based, written information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations, including physical developmental, educational and psychosocial outcomes;
2) life expectancy, clinical course and intellectual and functional development and treatment options; and
3) contact information regarding telephone and online assistance and support services, including information hotlines specific to Down syndrome, resource centers and other education and support programs.
“With the prenatal screening and modern diagnostic techniques available to us today, parents can be better prepared than ever to care for a child with Down syndrome,” said Moriarty (D-Camden/Gloucester). “Providing the resources outlined in this law will help parents better understand this disorder and be the best mothers and fathers possible.”
“For a parent, being uncertain about how to manage the medical, behavioral and social challenges that Down syndrome presents can be a source of distress,” said Mukherji (D-Hudson). “This legislation will help parents learn the facts about this disorder from experienced professionals and provide a support system for New Jersey families.”
“The resources available to parents of children with Down syndrome can only serve their purpose if the parents know they exist,” said Garcia (D-Hudson). “Oftentimes, simply knowing that there’s somewhere they can turn for help with finding the specialists and therapists they may need and getting their questions answered can be a huge weight off parents’ shoulders.”
“The greatest wish for all parents is to see their children be happy and to help them reach their full potential, and that doesn’t change with a diagnosis of Down syndrome,” said Lampitt (D-Camden/Burlington). “Equipping parents with the knowledge and resources they need in order to provide the appropriate care will alleviate some of the apprehension they may feel surrounding this condition.”
In addition to publishing the requisite information on its website, the department may make such information available to any person who has received a positive Down syndrome test result. The law requires that the information be made available in English and Spanish in a manner that is easily understandable for women receiving a positive prenatal diagnosis or for the family of a child receiving a postnatal diagnosis of Down syndrome.
The law also requires a physician, health care provider, nurse, midwife or genetic counselor who renders prenatal care, postnatal care, or genetic counseling, to provide an expectant or new parent, upon the receipt of a positive test result for Down syndrome, with information on Down syndrome,.
The measure received unanimous approval from both houses of the legislature.