Are young adults with chronic illnesses slipping through the healthcare system?

There are 9.53 million young adults in America with a chronic disease or disability, however not all of them have adequate insurance. And even with insurance, many lack access to quality healthcare.

Though the Affordable Care Act (ACA) has allowed young adults to stay on their parents’ insurance until they are 26, many fall through the cracks after they have to establish their own insurance, according to a recent study released by the National Collaborative on Workforce and Disability (NCWD).

While 15 million young adults were able to take advantage of the ACA’s extended coverage provision, there are many whose parents don’t have insurance or can’t afford to keep older children enrolled. Some young adults are experiencing a gap in coverage for illnesses that need chronic care, including asthma, diabetes, heart disease, HIV/AIDS; and physical, intellectual, and emotional disabilities that are episodic and more unpredictable.

“In college, they may not qualify for school-based health insurance because of difficulty in maintaining full-time status because of their medical issues. They have difficulty obtaining employment-based insurance coverage because they cannot obtain full-time employment in mid- to large-size companies and, about 74% who met childhood Medicaid’s eligibility criteria fail to meet Social Security income (SSI) disability criteria, which is necessary for adult Medicaid eligibility. Thus, they are forced into low-income jobs or unemployment to qualify for and maintain SSI eligibility,” the study points out.

Even those who can secure Medicaid assistance have a hard time finding physicians who can help them transition from pediatric to adult care. Also, Medicaid is often drastically more restrictive when it comes to providing medically necessary care compared with high-tech and attentive pediatric healthcare systems. Many young adults continue seeing pediatricians well into adulthood.

“Medicaid pays for services that enable young people with significant disabilities to live in the community, but it favors paying for institutionalization,” the study finds. “Waiting lists in 38 states for community-based services can force young adults to wait more than 2 ½ years; some of these young people are forced to move into institutions because they no longer receive the personal services they had as children to maintain basic function, e.g., to eat, dress, bathe, etc.”

The NCWD is recommending that pediatric medical homes are a good place for pediatric doctors to work with young people and their families to provide comprehensive medical care that extends into adulthood. The organization also states that accurate data collection, healthcare professional development, and stronger federal oversight are among several policy issues being discussed to assist more young people into a smoother transition into being productive adults.

“The medical community needs education on healthcare transition and quality healthcare, so young people with childhood-onset chronic conditions and disabilities can thrive, learn, work, earn, and participate in community life,” NCWD states.