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.
During the pandemic, California and other states didn’t require people to renew their membership Medicaid, known as Medi-Cal in California.
That changed on April 1, when California began sending out renewal packets once again. Renewals will be sent out in batches, based on the month in which beneficiaries originally applied for Medi-Cal.
Children who need medically intensive care cannot attend traditional day care programs. California has an option for these kids, called Pediatric Day Health and Respite Care facilities.
But the amount the government pays these facilities to care for children has not kept pace with inflation and rising staffing costs. Because of the stagnant rates, California’s pediatric care facilities are in danger of closing.
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.
Fetal Alcohol Spectrum Disorders are alcohol-related disorders thought to be the most common birth defects in the western world.
A recently passed California law should make it easier for children affected by these disorders to access special education services. The law goes into effect in January.
As an abled parent of a disabled child, I’m learning to help my son manage accessibility burdens because our communities and institutions aren’t designed with him in mind.
We can do better for children with disabilities by building more accessible, more inclusive communities and by teaching them how to assert their rights in situations that aren’t in compliance with the law.
I made the choice to continue a high-risk pregnancy, but I honor the choice of any pregnant person who opts to terminate given the same set of facts.
What I don’t like is seeing ableism — that is, prejudice against adults and children with disabilities — rolled into discussions about abortion, as has happened often since the U.S. Supreme Court overturned Roe v. Wade.
The state cut funding for social and recreational services for children with disabilities 13 years ago, which meant regional centers could no longer pay for summer camps, swimming lessons and other recreational programs for children with disabilities.
Now the centers have to figure out how to reinstate them, which has led to glitches for families trying to access these services.
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.