About 11 million United States children have special health needs. Half of
them – 5.6 million – receive at least 5.1 hours per week in medical care
at home.


U.S. families provide nearly $36 billion annually in uncompensated
medical care at home to children who have special health care needs,
such as muscular dystrophy and cystic fibrosis, revealed a large
national study.

‘United States families provide nearly $36 billion annually in uncompensated medical care at home to children who have special health care needs.’

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The study by researchers at USC, Boston Children’s Hospital and RAND
Corp. appears to be the first to document the volume and cost of the
children’s in-home medical care. In many cases, depending on their
condition, children receive much more. While home care is beneficial for
the children, it comes at great cost to family members or guardians.

Many parents and guardians are of limited means and would struggle to
afford a professional caregiver, which would cost an estimated $6,400 a
year per child, the study found. Even an unskilled professional to
assist with care would cost them $2,100 a year.

“Children with chronic health conditions require a significant amount
of care, and hiring a home health aide can be prohibitively expensive
for a family,” said lead author John Romley, an economist at the USC
Leonard D. Schaeffer Center for Health Policy and Economics. “To
maintain their child’s care, families often incur financial and
emotional stress from reduced earnings.”

Children who receive the most medical care at home tend to be age five
or younger, are Hispanic, poor and live with conditions, such as cystic
fibrosis or muscular dystrophy, that interfere with daily activities,
the researchers found. Most of their parents or guardians did not
graduate from high school. The families have had both public and private
health insurance.

Although advances in care have enabled families to take on medical
tasks such as changing feeding tubes or providing physical therapy at
home, they do not receive reimbursement or pay for the hours they spend
caring for the children. The value and cost of this care was unknown
until now.

The financial burden of caring for children with special medical
conditions can weigh heavily on families. Their efforts are
time-intensive. Many miss work to care for their children. Collectively,
the families lose more than $17 billion in income each year, the
researchers determined.

“Parents want to do everything they can for their children, but it
can be a real challenge to juggle their ill child, their other children
and sometimes their job,” says Mark Schuster, chief of General
Pediatrics at Boston Children’s Hospital and senior investigator of the
study. “If parents did not provide this care at home, children would
need to stay in the hospital longer, professionals would need to come to
the home, or children might not get the care that their physicians
prescribe.”

The findings were published in the journal Pediatrics.

Children receiving the most in-home care For the study, the
researchers analyzed data collected in the 2009-10 National Survey of
Children with Special Health Care Needs. The survey results were based
on telephone interviews with a sample of 40,242 parents and guardians of
children with special needs.

Care is much more time-intensive for certain conditions. The
researchers found that 12% of the children receive more than 21
hours per week of care – largely for conditions such as muscular
dystrophy, cerebral palsy, traumatic brain injury or concussion,
intellectual disability, or cystic fibrosis. These often are in
combination with other health conditions.

The researchers estimated the value of their in-home care by
calculating how much a family would spend to hire a caregiver. They
based their estimates for lost earnings on the caregivers’ wages.

For every child with special health needs, family caregivers forego an estimated $3,200 in earnings each year.

The families of these children do not just lose potential earnings or
compensation, the researchers noted. Studies have shown, for example,
that caregivers of a child who has cerebral palsy suffer psychological
distress, cognitive issues and emotional problems. Out-of-pocket health
care costs for a special health-needs child are three times more
expensive than the out-of-pocket costs for children without any special
conditions.

The researchers noted that the survey did not track the number of
hours that caregivers spend assisting the children with routine daily
activities such as bathing and dressing. “Had these tasks been
included,” they wrote, “the cost estimates would be much higher.”

Policy solutions Although the Affordable Care Act provides health
care to many of these families, the researchers said that the national
survey will not provide insight into its effects until the latest round
of data collection, which runs through 2017, is completed and released.

The researchers said policymakers could help caregivers with their
costs by offering employers incentives to adopt flexible work schedules
or shared-leave programs for employees. They also suggested paid family
leave programs, improving care coordination, providing respite care that
gives caregivers an occasional break, and home visits by clinicians.

“We need to do a better job of training family caregivers in how to
take care of their children at home, and we need better supports for
them,” said Schuster, a professor of pediatrics at Harvard Medical
School.

Source: Eurekalert



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