Last month the Children’s Health Insurance Program (CHIP) was allowed to expire, putting many children from low-income families in jeopardy. This program, which is mostly funded by the federal government, provided 9 million children and pregnant women with affordable health insurance. CHIP was created in 1997, and before it was in place, almost 14 percent of the children in the United States were uninsured.
By 2015, that number had decreased to 4.5 percent. The program was supposed to be renewed by September 30, but because Congress was wrangling over repealing Affordable Care Act (ACA), this crucial deadline was allowed to slide. While many states still have some money to fund CHIP, over half will run out by March 2018 unless Congress restores funding.
Costs families pay for CHIP vary from state to state, but are capped at 5 percent of yearly income. For children with disabilities such as cerebral palsy and other chronic medical conditions, CHIP means the difference between health care and no health care, and in some cases, between life and death.
Many Friends, Few Foes.... Why the Legislative Lockdown?
CHIP pays for a wide variety of medical expenses, including hospital care, lab and x-ray work, and physicals, as well as doctor visits when a child is ill. This program has saved the lives of children with serious diseases such as cancer, whose parents would not be able to afford care otherwise.
According to polls, 75 percent of Americans would like to have CHIP renewed, even if opinion is more divided on the ACA. Importantly, CHIP covers families are not able to receive Medicaid, but would not be able to pay for private health insurance. While CHIP bills are pending in the House and Senate, they are not scheduled to be voted on. Further, the House bill has other measures attached that would put its passage in jeopardy.
Given this unstable funding future, some families have turned to asking for donations through crowd sourcing. Sadly, Congress does not feel the same urgency for CHIP renewal as do parents of sick children.
Disability Doesn’t Come Cheap
CHIP is crucial for many children with disabilities, especially those whose treatment costs can run into tens of thousands of dollars every year. This includes children with cerebral palsy, whose medical costs are on average 10 times higher than other kids. If children have an intellectual disability and cerebral palsy, those costs are 26 times higher. In 2003, the Centers for Disease Control and Prevention (CDC) estimated that caring for someone with cerebral palsy over their lifetime cost about $1 million, which would now be many thousands of dollars higher due to inflation.
These expenses are due to the range of needs that children with cerebral palsy may have, including assistive devices, medications, doctor appointments, hospital stays, and personal care attendants. About 40 percent of children with cerebral palsy have some limitation in their ability to walk, and 30 percent need an assistive device such as a wheelchair or walker. Roughly 40 percent of children with cerebral palsy also have epilepsy, and 60 percent have another form of developmental disability, further complicating their care costs.
There’s Bad News and... Bad News
Compounding the crisis of CHIP nonrenewal, the current tax proposal put forth by Senate Republicans would allow premiums under the ACA to skyrocket by $2,000 for families that do not receive a subsidy, and about 13 million people would become uninsured. This figure includes 5 million people who would no longer receive Medicaid. Additionally, funding to Medicare would be slashed starting in 2018, with a $25 Billion reduction.
While Medicaid is meant to provide healthcare to lower income individuals, most of the spending goes to elderly people and those with disabilities. Cuts like these to government-funded healthcare programs usually target the most vulnerable among us, who are least able to assert their right to medical care. When Medicaid was expanded by the ACA, nearly half of the people who began to receive coverage were adults with some form of disability. Thus, these proposed cuts would be disastrous not only for those who would lose current coverage, but for kids with cerebral palsy and other disabilities, whose access to health care would be put in question as they got older.
The 4-Year War
Given the near-constant assault on health care for disabled and poor individuals over the past year, it is apparent that under the Trump regime, disabled people and their advocates will have to remain vigilant to make sure services are not slashed.
Only by raising our voices in a continued and collective “No!” can we reach the ears of our representatives on Capitol Hill, and hope they will support the right of all Americans to quality and affordable medical care.