Autism, Autistic-Like, and Health Insurance Reform

In his post Implementing Reform: Children with Special Health Care Needs, Professor John Jacobi notes that providing “health insurance” to children with special health care needs (”CSHCN”) does not ensure that their needs will be met.  Many private health insurance plans do not cover services such as occupational, physical, or speech therapy for CSHCN.  Private plans frequently limit coverage for such therapies to otherwise healthy children who need therapy to facilitate their recovery from an illness or injury.

Through their power to regulate insurance, states can require private plans to extend coverage for needed therapies to CSHCN.  For example, in legislation passed earlier this year, New Jersey became one of an estimated 15 states to specifically require insurers to provide treatment for individuals with autism.  Children with autism have benefited from a wave of recent legislation — 8 states enacted laws related to autism and insurance coverage in 2009 alone.  Children with other special needs have been largely left behind.  Many go without services; others may be shoehorned into an inappropriate autism diagnosis.  A recent documentary, Autistic-Like, tells the story of parents pressured to accept an autism diagnosis in order to access state-funded services for their son.  While New Jersey’s autism mandate is admirably broad, requiring private insurers to cover occupational, physical, and speech therapy for individuals with “autism or another developmental disability,” other states’ mandates are strictly limited to children on the autism spectrum.

Insurance mandates are attractive to legislators because they are off budget.  They are not, however, without cost.  The Council for Affordable Health Insurance, an insurance industry association, estimates that “an autism mandate increases the cost of health insurance by about 1 percent.”  Mandates like New Jersey’s, which extends beyond autism, could lead to even greater cost increases.  Piecemeal reform that privileges some special needs over others has costs of its own, however, not the least of which are borne by children living with labels that do not fit.

Implementing Reform: Children with Special Health Care Needs

Lewis Wickes Hine, National Child Labor Committee, U.S. (1912?)

The public option took a hit on Tuesday, as the Senate Finance Committee rejected amendments adding it to the Chairman’s Mark of the Baucus bill. As I have written previously, a public plan could improve care for the most vulnerable, including those with chronic illness, who tend to struggle for appropriate care under commercial plans. If the public option is dropped, the implementation of the resulting private plan-based system, including enforcement and regulatory design at the federal and state levels, becomes that much more critical to the task of assuring access to appropriate care.

The bills build on the benefits design of the private insurance market, as did Medicare and SCHIP before them. Those programs adopted familiar, private-sector benefits design and payment methods for political and pragmatic reasons: powerful stake-holders were comforted, and implementation was simplified. The bills build on this lineage. The Baucus bill, for example, requires all plans offered by the insurance exchanges to provide:

preventive and primary care, emergency services, hospitalization, physician services, outpatient services, day surgery and related anesthesia, diagnostic imaging and screenings (including x-rays), maternity and newborn care, pediatric services (including dental and vision), medical/surgical care, prescription drugs, radiation and chemotherapy, and mental health and substance abuse services that at least meet minimum standards set by Federal and state laws.

Pretty standard stuff. But describing a slate of covered benefits, and ensuring that that care is properly delivered by private, mostly for-profit firms, are different things entirely.

Take the example of children with special health care needs (”CSHCN”). The Maternal and Child Health Bureau of DHSS defines CSHCN as “…those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” The Catalyst Center at Boston University identifies these children’s health conditions as including:

chronic illnesses such as diabetes, sickle cell anemia, cystic fibrosis, and heart disease; developmental disabilities such as mental retardation, sensory impairments, and autism spectrum disorders; emotional or behavioral health needs including ADHD and mental health conditions; and physical disabilities such as cerebral palsy, spina bifida, or muscular dystrophy.

Simply providing “health insurance” to children with these conditions is no guarantee that they’ll receive appropriate services. A 2002 study by Harriette Fox and others for HRSA reported that insurers have interpreted contract terms to exclude categorically some conditions such as mental retardation or “inorganic disorders.” Others have limited medically necessary services such as speech therapy or habilitation therapy because they are not curative or restorative, but merely needed to maximize a child’s ability to function.

These contract terms and their interpretations have not often been challenged by state departments of insurance, because those terms and interpretations have the power of custom and industry practice behind them. These customs and practices, however, can deny care that children desperately need to live socially integrated and healthy lives. Amy Davidoff and coauthors in 2004 examined the difference in children’s coverage experiences when covered by Medicaid on one hand, or by private plan-mimicking SCHIP on the other, with respect to denial of access to needed services, including medically necessary ancillary services. They reported that,

Medicaid-eligible children tend not to face these concerns, in part because Medicaid explicitly covers medically necessary services not covered by private insurers. To the extent states pattern their SCHIP programs on private insurance and not Medicaid, the children lose that benefit.

The Baucus bill adds to Medicaid’s strength in this regard. At Title II, Subtitle B of the Chairman’s Mark (after the acceptance of an amendment from Senator Debbie Stabenow), a new Medicaid state plan option will permit states to offer, for children with at least two chronic conditions or one serious and persistent mental health condition,

Comprehensive care management; care coordination and health promotion; comprehensive transitional care, including appropriate follow-up, from inpatient to other settings; patient and family support; and referral to community and social support services, if relevant…

What of families covered by the private competitive marketplace of health insurance or SCHIP? The bills speak in general terms of the power of federal and state regulators to ensure adequate and appropriate coverage. This enforcement power should be used to ensure that coverage applies to chronic and disabling conditions as it does to run-of-the-mill medical/surgical cases. Future posts will examine some of the specific enforcement language, which will be key to the realization of the promise of reform to CSHCNs and others with chronic and disabling conditions.

Universal Health Insurance for America’s Children - Can It Happen?

by katchingkyleigh1 via flickr

It is no secret that America’s health care infrastructure leaves much to be desired.  It spends more on health care than any other country in the world, but is far from achieving the best results.  The extreme cost of care has contributed to increased rates of the un- and underinsured — climbing from 41.2 and 15.6 million in 2003 to  49.6 and 25.2 million, respectively, in 2007.

Most observers agree that the American health care system is badly broken–if it ever was intact–as evidenced by the large number of Americans without health insurance, the high and rising costs of health care, and the relatively poor health outcomes achieved for the money spent.

What might be lesser known is the degree to which lack of health coverage affects children.  In their article, Universal Health Insurance for Children, published in the Journal of Health Care for the Poor and Underserved, Hughes et al. note that despite programs designed to enhance children’s access to coverage like State Children’s Health Insurance Program (SCHIP), about 8.1 million children were a part of the uninsured population in 2007.  Confusion about eligibility is often cited as a reason many children — over 80% of low income uninsured children - who are eligible for coverage do not have it.

Children’s health insurance status helps predict whether they receive needed health care and provides a critical means for identifying and addressing their health problems early in life… Children  who experience unmet health problems are more likely to miss school, to incur high costs for medical care, and to have parents miss work due to caring for an ill child.

Consequences of non-coverage of children start with compromised access to health care and turn into compromises to the American economy.

Lack of insurance coverage for children not only has an immediate impact on those whose access to care is limited, but it also has social implications in terms of potential public health threats due to untreated communicable diseases, higher health care costs for end-stage treatment, and consequences for the economy in terms of productivity and high insurance costs to businesses.

It has been well documented that providing health insurance coverage is cheaper than paying for the consequences associated with the alternative, but America has been resistant to providing universal coverage.  Providing coverage specifically for children, on the other hand, has been met with less resistance.

The social and individual benefit of extending preventive care and health insurance to children, however, is somewhat less contentious [than providing insurance to adults], largely because children are viewed more sympathetically than adults by health care leaders and the American public.

Hughes et al. argue for immediate universal coverage for children, rather than waiting for universal coverage for the country as a whole and note that it would have to occur at the federal, as opposed to state and local, levels.  They make two recommendations for achieving this goal.

One option is to create a Medicare-like federal program under which all children are automatically enrolled in a comprehensive insurance program, regardless of income. By and large, Medicare works well for seniors and is a reasonable model for children. Another option involves modifying Medicaid, SCHIP, and other categorical programs to create a uniform insurance program for low-income and undocumented children that eliminates the confusion and complexity associated with multiple programs. Both options would require sufficient minimization of paperwork and reimbursement to providers to ensure that coverage translates into genuine access to care.

Hughes et al. point out that most Americans support universal coverage, especially for children, despite the added tax burden it may cause.  This is probably a sentiment reflecting the reality of the extreme cost and gross inefficiency of the American health care system.  As children constitute a categorically vulnerable population which affords them the sympathy of the country, it makes sense to begin the road to universal health care in this country with them.  The vast majority of taxpayers are willing to foot the bill and we have an administration ripened to bring about such a change.  If ever there was the time to begin the process of providing universal health insurance to children in America, it would be now.

Bill Before Congress Would Extend Health Insurance to Children of Legal Immigrants Sooner

The New York Times reports that Congress will likely pass a bill to provide health insurance to millions of low-income children. Similar legislation was twice vetoed by President Bush in 2007.

Under the proposed legislation, states would have the option to restore health insurance benefits to legal immigrants under 21 as well as pregnant women. Currently, legal immigrants are barred from Medicaid and the State Children’s Health Insurance Program for the first five years after they enter the United States.

It is estimated that 400,000 to 600,000 immigrant children are affected by the restriction currently in place. The Times notes that:

Among children, legal immigrants are less likely to receive immunizations and routine dental care.

and

[A]mong women, legal immigrants are less likely to receive prenatal care.

Opponents of the bill argue that the original purpose of program-to serve the children of the working poor-has not been fulfilled, raising concerns about extending it to legal immigrants and others groups not originally contemplated.

Others argue that the expected costs of the bill would be too great. The program currently covers about 6.6 million children and costs the federal government $5 billion a year. The Times estimates that the passage of the bill could double the annual expense of the program. The expanded program proposed by the new bill would be financed by tobacco taxes.

President-elect Obama has already expressed his support for allowing states to offer health insurance to legal immigrant children before the five-year waiting period is met.

Generally, the bill is garnering significant support from various sectors. Many people feel that all children should have health insurance. There is great support for this proposition as well. By extending health insurance to more children including legal immigrants, not only will children in need of care be provided for, but by providing greater access to preventive care, states will reduce overall health care costs .

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