“It was once said that the moral test of government is
how that government treats those who are in the dawn of life, the children;
those who are in the twilight of life, the elderly; and those who are in the
shadows of life, the sick, the needy and the handicapped.”
— Hubert H. Humphrey
Our nation’s leaders are facing a watershed moment as
they try to build a consensus on how to best address the long-term deficit. The path our government takes at this
pivotal point in history will define our society. Probably no other group has more at stake in this debate
than children and youth with special health care needs. In the words of the late Hubert
Humphrey, they are both in the dawn of life and the shadows of life. How these children are treated in the
budget debate is a moral test of government.
Children and youth with special health care needs are
more likely to be covered by Medicaid than other children. Families raising
children with serious conditions such as autism, cancer, cerebral palsy,
complex genetic disorders, and epilepsy rely on Medicaid’s comprehensive
benefit and cost-sharing protections because of their relatively extensive
health care needs. Overall, Medicaid is the largest single payer of health care
services for these children and many of their families would face financial
ruin without its help. Many of
these families have private health insurance but need Medicaid to help them
meet the costs of caring for their child in their home rather than placing them
in more costly institutional care.
Others need help paying for expensive life-saving medicine or medical
bills that are not covered by their private health insurance plans. Even with Medicaid’s help, many of
these families make great personal and financial sacrifices in order to care
for their children.
Georgetown University Health Policy Institute’s Center
for Children and Families partnered with Family Voices to collect case studies
of families raising children with special health care needs to help inform
policymakers about what is at stake in the debate over the future of
Medicaid. The families included in
our report were from all across America and working hard to meet the needs of
children with a wide variety of medical needs but they were remarkably similar
in one respect – they all cherished Medicaid and didn’t know what they would do
without it. Not only does Medicaid
provide their children with the health coverage their lives depend on, but it
many instances, it is the backbone of the family’s economic security.
The mother of a child born with spina bifida said:
“I cannot imagine going one single moment through Emma’s
life without Medicaid as her secondary insurance. At times her medical and
pharmaceutical bills could easily put our family of six on the street. It’s
hard enough to raise a family in this day and age, but imagine what it’s like
to live with children affected by life-long special healthcare needs.”
The mother of two children with a mitochondrial disorder
said her family would be bankrupt without the help of Medicaid. She shared the following story:
“When I was pregnant with Matthew, my husband and I felt
well-prepared to meet the financial responsibilities of parenthood: we had college educations, owned a
home, were blissfully without consumer debt and, via my husband’s job as a high
school history teacher, had great private insurance. Six months later, as Matthew spent his first Christmas in
our local children’s hospital, our world was very different. Our son’s complex medical needs were not entirely covered
by our health insurance, we had a staggering amount of medical debt, and even
when our medical cost swallowed a huge portion of our income we did not qualify
for the majority of safety net programs.
For several years, our young family struggled to meet our children’s
needs, often making painful choices about how long we could safely wait for
doctors visits, test and procedures. We worried about our ability to maintain our housing
and often struggled to have enough money for food. For many families like mine
Medicaid is a key partner in meeting those needs. We are happy to be a family like so many others, spending
money in the economy and paying taxes back into the system, as well as
volunteering, but none of that could happen without Medicaid. I share my story because it is the
story of families all over America, who never expected to need Medicaid and
likely didn’t understand its role in supporting children with special health
care needs until it affected them directly.”
The mother of a boy with autism explained that her family
has had a hard time saving for her other son’s college education because they
have spent the equivalent of college tuition on uncovered medical bills for the
past several years. She expressed
deep concern about the current budget debate saying:
“Proposals to cut Medicaid represent survival of the
fittest at its worst. By cutting Medicaid, you’re telling our children, the
disabled and elderly that you are not valued in our society.”
Many of the families included in our report pointed out
that they have made great personal and financial sacrifices in order to care
for their children with special health care needs. Most were so
financially stretched that they would have nowhere else to turn if Medicaid
were unavailable.
Leaders from both sides of the aisle have publicly voiced
support for protecting health care coverage for children. Senator Orrin Hatch (R-UT) has said:
“Parents should not have to decide whether to buy health insurance for their
children or put food on the table.”
President Obama has said: “In a decent society, there are
certain obligations that are not subject to tradeoffs or negotiation – health
care for our children is one of those obligations.” Families of
children with special health care needs see Medicaid as a “lifeline” and are
counting on lawmakers to back up those words with action by preserving that
lifeline for those who need it the most.