According to a study by the Lucile Packard Foundation for Children's Health, California is ranked last in the U.S. when it comes to effective referrals for specialty medical care for children, and 46th in the country for effective medical care coordination.
There are approximately 1 million children in California who have chronic emotional, developmental, and/or physical challenges, and they all need competent, specialized care. The Packard Foundation for Children's Health was founded in 1997 to raise the quality of children's healthcare and improve public access. Currently, more than 40 percent of parents with children who have complex health needs report that they struggle to find the correct medical professionals and getting much-needed appointments with them.
The Packard analysis also found that parents in the state who had a child with special needs reported greater-than-average difficulty finding quality health insurance, consistent child care, medical equipment and transportation, and were more likely to stop working than parents in other states who had a child with special needs. Children in California with complex health needs were less likely to receive all the services they needed, the study found.
The Packard analysis did not tell the California-based parents of children with special needs anything they did not already know; they need a better support system to better support their child.
Parents also need to prepare Special Needs Trusts for their special needs children. In addition to setting aside money for the child – without jeopardizing eligibility for government benefits – such trusts name a “trustee” who serves as an advocate and resource for the child.