The baby formula shortage wreaking havoc across the United States is terrifying for any parent who relies on infant formula to feed their child. It’s especially calamitous for babies and children with special health care needs who rely on special prescription formulas that have also been impacted by the supply shortage.
The shortage highlights an ongoing, systemic failure to ensure vulnerable children have secure access to medically necessary, life supporting products and equipment.
Many families that foster and ultimately adopt children with disabilities encounter challenges such as receiving insufficient medical supplies to care for the children and incomplete information from child welfare agencies about the children’s health histories.
Foster families and their advocates are working to mend the gaps in the system that can cause undue stress on these children who, in most cases, have already been through trying times before coming into foster care.
California’s system for providing durable medical equipment and supplies at home is complicated and difficult to manage, even in normal times. During the COVID-19 pandemic, rationing and supply chain disruptions have made things impossible for families of children with special health care needs.
I believe California needs a state oversight office for durable medical equipment to give families and patients a way to resolve problems before they cause harm.
A coalition of Latinx parents is suing Harbor Regional Center, alleging discrimination against Latinx children and adults with disabilities and demanding more services.
The lawsuit accuses the center of routinely dismissing Latinx families’ requests for help, of providing less comprehensive services than needed, and of burdening families with unnecessary requirements as well as failing to adequately inform them when services are canceled or changed.
The COVID vaccine for children is safe and effective, and it’s the best way to protect not only children but also the larger community.
Was I concerned about the risks of the vaccine? No. COVID is a far greater threat to my son, who has to go to the ICU when exposed to the kind of germs that give healthy kids the sniffles. The vaccination also benefits my healthy daughter, who won’t have her schooling interrupted by quarantines.
Research shows children with chronic illnesses are at least twice as likely as healthy children to develop a mental health disorder. They’re at higher risk for neglect and abuse. Their caregivers and siblings are also at increased risk for mental distress.
Yet there are few mental health treatment programs that cater to the needs of these children and their families. The MEND program at Loma Linda University is an exception.
Climate change is a growing threat to people with disabilities. Not only is the weather getting hotter, but Californians are facing more frequent wildfires, poor air quality, evacuations and power outages. These events are particularly difficult to navigate for people with complex medical conditions and those who care for them.
Yet, researchers and policymakers have historically overlooked this vulnerable population when it comes to emergency planning.
For young adults with serious disabilities, the transition to adulthood is filled with challenges. In interviews with the California Health Report, young people and their families described the difficulties and triumphs they’ve experienced during this phase of life.
Overall, young adults with disabilities, their parents and advocates said too many families don’t know what to expect, or how to get the services they need. Health officials, regional centers, and school districts need to foster more awareness about what it’s like for these youth to transition to adulthood, they said.
As federal and state policy makers make plans for infrastructure and budgetary spending, let’s not forget to invest in the infrastructure of care too, particularly for children with disabilities.
The framework of support that makes it possible for families to care for children with complex care needs safely, in their own homes and in their local school systems, is part of our infrastructure of care.
Throughout the pandemic, medically fragile children in California’s pediatric long-term care facilities and their parents have endured drastic limits on their ability to see and interact with each other. Some locations barred parents and other caregivers from visiting their children in person for over a year, citing virus safety precautions.
Advocates and parents said they’re concerned that visitation policies at pediatric subacute units during the pandemic may have caused long-term harm to kids.