Health & Wellness

Kids with special needs still face care gaps

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Research shows need for better support for vulnerable families

Despite the advantages of patient-centered care models, kids with special health care needs still face challenges in finding the full range of support they need, according to new research from the University of Georgia.

The study found that even within the medical home model – considered the gold standard for pediatric care – children with more severe conditions still faced care gaps. Other factors like income level and where the family lived also impeded their ability to access care.

Within the medical home model, patients have a regular primary care provider and a team that helps them get connected to any additional specialized care and community resources, such as family support groups, they may need.

Disparities in outcomes

“Overall, having a medical home was associated with good outcomes, but some significant disparities exist,” said lead author Rebecca Wells, a clinical assistant professor with joint appointments in UGA’s College of Public Health and School of Social Work.

Nearly one in five children in the U.S. has a special health care need. These include physical conditions, like asthma or cystic fibrosis, as well as mental health and behavioral conditions like autism and developmental disabilities.

Unsurprising, the type and amount of care needed varies widely depending on what condition the child has. Most conditions require some sort of specialized care outside of regular visits with a pediatrician.

It’s unrealistic for pediatricians to know how to handle such a wide range of possible health conditions, said Wells.

“That’s a pretty tall order to fill, and the more complex your needs are or the more specialized your behavioral and developmental conditions are, you’re going to need different types of treatments or resources or interventions,” she said.

No silver bullet

That’s why the medical home has been held up as a possible solution.

But no health care delivery model is a silver bullet, said Wells.

“The reason I wanted to do this analysis was to see what kind of issues might come for different types of conditions,” she said.

Wells and her co-authors analyzed responses from a national survey of caregivers to better understand the medical home model’s impact on health care delivery and health outcomes for children with special health care needs.

They also looked at variables that impact access to care like income and education levels, where families lived, whether they had insurance, as well as the age, sex and race of the child, collectively known as social determinants of health.

Some face barriers

“The medical home consistently predicted good outcomes, but these needs-based factors and social determinants of health still play a role,” said Wells. “If the medical home were a holy grail, you would hope that those variables wouldn’t be significant.”

Low-income families or families living in rural areas, for example, are more likely to experience health care barriers, especially when it comes to finding the specialized care or community resources they need.

That reality was borne out in Wells’ analysis, and she says we must do more.

“We need better systems that better support vulnerable families, particularly those who have more complex health care needs,” she said.

The study, “Impact of medical home-consistent care and child condition on select health, community, and family level outcomes among children with special health care needs,” was published in Children’s Health Care. Read it online here.