Caring for children with special needs is demanding work. Without adequate support or rest, parents can end up feeling depleted and alone.
The solution, according to experts and parents who have faced these challenges, is to reach out for help, connect with other families of children with disabilities, and prioritize self-care.
For children with complex medical needs, palliative care can offer physical relief and also support to families.
However, systemic failures such as a shortage of places that offer palliative care services for children, and also a shortage of physicians who do this work, lead to long wait times and administrative hurdles. The issues with the system, according to experts, can be fixed.
Our house lost power a few nights ago, during one of 2023’s record-setting storms. For our family, losing power is a medical emergency.
But on this occasion, for the first time, I had access to a portable power station. Portable power stations are rechargeable batteries that can provide hours of backup electricity, which is especially important for people who use medical devices or assistive technology.
Since the start of the COVID-19 pandemic, finding nurses to care for medically fragile children at home has become extremely difficult, according to parents of children with disabilities and home health agencies.
The shortage has prompted calls for California’s governor and legislature to increase Medi-Cal reimbursement rates for home nurses by 40 percent.
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.
Parents of children with fragile, medically complex disabilities are expected to provide the same level of care during emergencies that intensive care units provide, but they’re expected to do it in the home.
The stakes are high: If you make a mistake, your child could die. That’s not a comforting thing to tell a new parent of a fragile baby.