As many as one in five U.S. children has special health care needs, and some of their caregivers are struggling to get them the support, care and services they need, new research shows.
Kids with special health care needs may have physical conditions (such as asthma or diabetes), mental health issues (including attention-deficit/hyperactivity disorder or anxiety), developmental disorders (like autism or Down syndrome), or a combination of these conditions.
These kids often require additional health care and support. Right now, those who receive such care are likely to get it through the "medical home" model, new research shows. In such a model, a pediatrician serves as quarterback and coordinates care with specialists and other providers.
Children who did not receive consistent care in a medical home model were less likely to receive preventive services, easily access community services, and their caregivers were more likely to report unmet health care needs and unmet family support needs, the study found.
The findings are based on interviews with more than 32,000 caregivers of special needs kids who took part in the 2009/2010 National Survey of Children with Special Health Care Needs. Of these, 43% said their child was receiving care through a medical home model. The study was published online recently in the journal Children's Health Care.
Medical homes are the gold standard for these kids, but even this model is not 'one-size-fits-all,' the study authors found.
"Medical home-consistent care does not seem to be enough to guarantee positive outcomes for families dealing with more complex conditions, who have lower incomes, and whose children were uninsured or inconsistently insured through the year," noted study author Rebecca Wells. She is a clinical assistant professor at University of Georgia's College of Public Health and School of Social Work, in Athens, Ga.
Another big factor in care is where in America kids live, Wells said. A family of a child with autism and severe symptoms may really struggle in a rural county, for example. "They may need special therapies, support groups, or respite that is just not available in their area," she explained.
More is needed to make sure these kids and their families get the care and services they need as efficiently as possible, Wells said.
This starts with making sure all children are insured and remain that way. "We have private insurance, Medicaid and the State Children's Health Insurance Program in our country, yet children still can fall through the cracks if a caregiver loses a job or even if there is a paperwork error, or the caregiver gets confused about re-certifying the child's eligibility for state-sponsored health coverage," Wells explained.
Increased funding to train health professionals who want to work with children with special health care needs, and incentives to work in underserved areas may help shore up some of these gaps, she suggested.
Experts not involved in the new study agreed that the medical home model is the way forward.
"Each child [needs] a relationship with a personal physician and a practice-based care team that takes collective responsibility for the patient's ongoing care -- ensuring that it is coordinated across care settings and disciplines," said Dr. Andrew Adesman. He is chief of developmental and behavioral pediatrics at Cohen Children's Medical Center in New Hyde Park, N.Y. Such care is especially important for children with greater or more complex health care needs.
"The medical home model actually reduces health care costs by reducing hospital and emergency department visits," Adesman said.
Dr. Nicola Brodie, a pediatrician at Children's National Hospital in Washington, D.C., noted that "children who have added medical complications need a system in place for one-stop shopping to access all of these services. The medical home model should be the standard of care for all children."
The U.S. Social Security Administration offers information on insurance benefits for children with special health care needs and disabilities.
SOURCES: Rebecca Wells, MPH, PhD, clinical assistant professor, College of Public Health and School of Social Work, University of Georgia, Athens; Andrew Adesman, MD, chief, developmental and behavioral pediatrics, Cohen Children's Medical Center, New Hyde Park, N.Y.; Nicola Brodie, MD, pediatrician, Children's National Hospital, Washington, D.C.; Children's Health Care, Nov. 28, 2020, online