Closing the Gap for the Nation’s Most


Vulnerable Population


Guest Editorial by Thomas W. Chapman, MPH, FACHE


Closing the Gap, Disabilities • October/November 1999


Over the last few years, the health care system and the 

Federal government have increased attention to sociocultural barriers to health care access and how they affect 

the lives of minority and low-income Americans. Now more than 

ever, the government and the health care industry are taking a 

hard look at ending the disparities in access, health status, and 

quality of care. However, as our awareness of these issues increases, 

so does the recognition of an emerging subgroup: the 12.6 million 

children under age 18—prevalently male, African American, from 

low-income and single parent households—who suffer from 

chronic physical, developmental, behavioral, or emotional conditions. 

A 1998 study published in Pediatrics (vol. 102, no. 1) revealed that these children with special health care needs represent 

18 percent of the nation’s population, yet present its most needy 

and vulnerable citizens, with complex medical, social, and educational needs that are pressing and difficult to coordinate. 

For low-income and minority families, navigating the rapidly 

evolving health care system has always been a challenge. When 

these families include children with special health care needs, the 

task is magnified. These families face substantial obstacles to health 

care access such as lack of transportation and language barriers. For 

children with special needs, this often translates into missed appointments, poor patient compliance, and reliance on episodic 

health care—often in emergency rooms. 

These barriers impact other aspects of these children’s lives, 

carrying over from the sickroom to the classroom. Children with 

special health care needs experienced three times as many sick days 

in bed and school absences annually as those without special needs. 

According to the 1994 National Health Survey on Disability, an 

estimated 11 percent of these children were uninsured, and 6 

percent were without a usual source of health care. Eighteen percent reported being dissatisfied with one or more aspects of care 

received at their usual source of care, and 13 percent had one or 

more unmet health needs in the past year. 

There are at least 930,000 children receiving Supplemental 

Security Income (SSI), according to the Social Security Administration. There may be many more children who qualify for these 

benefits but for a number of reasons, do not receive them. In 

addition, new eligibility rules for SSI required by welfare reform 

legislation resulted in about 143,000 children losing their SSI 

eligibility by the end of 1997. Due to gaps in transitioning to the 

new system, many of these children may have lost their Medicaid 

benefits as well. According to Family Voices, a national advocacy 

group for parents of children with special needs, although the 

Social Security Administration invited families to appeal, many 

were discouraged and confused by a review process that is complicated, lengthy, and requires expert legal assistance. 

The Federal government is also encouraging states to enroll 

children with special needs who are SSI/Medicaid beneficiaries 

into managed care programs. But this policy comes with limited 

guidance and liberal guidelines on how best to serve this population in a competitive model. There does not appear to be a welldefined strategy focused on addressing the issues of transitioning 

families with special needs into the managed care system, nor a 

strategy focused on addressing the social needs which often undermine access to care. 

What can be done? 

•	 The Federal government and states should support programs 

that involve children with special needs and their families in 

the planning and design of health care and outreach programs, particularly under the Title V Maternal and Child 

Health block grant and CHIP block grant programs. 

•	 Managed care organizations and Medicaid agencies should 

be required to focus on well-organized coordination systems, 

customized provider networks with a focused number of experienced and capable organizations, and the development 

of primary care management programs, versus capitated arrangements. 

•	 Regulation and implementation of the SSI program should 

be improved through development of enhanced outreach 

and education activities to insure that all children who need 

benefits will receive them, and that children who have been 

denied SSI will be tracked, and their situations resolved. 

•	 We should fund and support efforts to develop comprehensive programs and wrap-around services that enable families 

of children with special needs to maximize access and efficiently utilize their time in managing their family’s health 

needs. 

Mr. Chapman is director of the “Opening Doors: Reducing Sociocultural Barriers to Health Care” program, sponsored by the Robert 

Wood Johnson Foundation and the Henry J. Kaiser Family Foundation. Opening Doors funds and supports service and research projects to 

identify and break down non-financial, culturally-based barriers to 

health care. For more information, call (202) 974-4690.

Office of Minority Health Resource Center	 U.S. Department of Health and Human Services