Wednesday, September 17, 2008

Should Health Insurance Cover Services for Autism - an Ethical Analysis

A whole course in health system ethics could be built around the issues raised by an article in yesterday's Boston Globe about insurance coverage for autism services. I've taken four slightly altered snippets from the article and followed them with comments (in italics):
1. "The nation's largest autism advocacy group, Autism Speaks, is planning a legislative push in 20 states, including Massachusetts, to require private insurance companies to pay a portion of the intensive, expensive educational treatments that many medical professionals say are a child's best chance to overcome, or just learn to cope with, profound and lifelong developmental and learning disabilities."
In a democratic society advocacy groups like Autism Speaks play the crucial role of organizing and amplifying individual interests into a voice that can be heard in the political arena. The fact that the services being requested are expensive will cause headaches for program managers, but autism is a serious impairment, and advocates can make a legitimate claim that a just society will not make access to services contingent on the wealth of the individual family. But it isn't yet clear whether society's obligation belongs in the health sector.
2. "'If my son couldn't hear and needed a cochlear implant, we wouldn't be asking the school system to take responsibility,' said Jack's mother, Judith, coordinator of the New England lobbying effort for Autism Speaks. 'As a society, we have to acknowledge that autism crosses a line from an educational issue to a medical one. Jack was diagnosed by a neurologist, not a schoolteacher.' [Another parent added] 'we are talking about medical treatments prescribed by medical doctors, and covering them like any other medical treatments.'"
This argument is rhetorically powerful, but flawed. The fact that a physician makes the diagnosis doesn't tell us what social sector should be responsible for responding to the need. A physician may correctly diagnose arthritis and prescribe exercise in a warm swimming pool. The exercise may help tremendously, but that doesn't mean that health insurance must provide the pool or pay for access.
3. "But private insurers are balking at the proposed requirement, especially coverage of applied behavior analysis programs, which involve a weekly regimen of more than 30 hours of intense, often one-to-one, positive reinforcement techniques for teaching children how to speak, play, learn, and function in the world. They say applied behavior analysis programs are relatively new and unproven, and not effective for all children. ABA teachers are not licensed in many states, and insurers contend that the therapy system is still too new to be regulated sufficiently...But parents of autistic children are determined to get their youngsters into programs that offer even a glimmer of hope."
If I had an autistic child I too would want any service that offered a glimmer of hope. But societies must set standards for how strong the evidence for that glimmer is. The judgment requires empirical analysis - what do we know about the effectiveness of the intervention? But the judgment also involves value judgments - how strong must the evidence be? how much benefit must the intervention offer?

But if what the article cites is all insurers are saying, it is just a matter of time until some form of behavioral education comes under health insurance, since there will almost certainly be techniques that will be shown to provide benefit. I want to see children with autism have access to effective rehabilitative services, but I'm not at all convinced that the service belong in the health sector, as opposed to the education sector.
4. "Requiring insurers to pay for educating autistic children would 'drive up costs for everyone, said Dr. Marylou Buyse, president of the Massachusetts Association of Health Plans...Paul Andrews, director of government services for the Massachusetts Association of School Superintendents [said] 'Special-needs costs have escalated so high that it has reduced the amount of funding we can spend on regular education.'"
These comments show something fundamental about the health sector. There is no budget! If we add autism services, costs go up. But unlike health, the school system has a budget. If we add autism services, something has to come out. Some people argue that health is "priceless" and costs should not be considered. But that view is misguided ethics and faulty facts. Health is tremendously valuable. But it's not the only value. And we know that for every 1% increase in health care costs (the impact advocates say providing autism services would have) 150,000 people lose their health insurance. Legislators who vote to mandate new coverage that will "only" increase costs by 1% should recognize that while they are providing benefit for one group through the mandate, they are harming another group, who will be pushed out of the insurance system.

Autism advocates are smart to push for coverage under health insurance, since unlike education, the health sector currently has no explicit budget, so the cost of adding new expenditures is hidden, as in the form of an ever increasing population without insurance. At some point we will have to wise up and set budget limits for health care, the way we do for every other sector of society. At that point advocates, whether for autism or a new cancer treatment, will have to argue that their services are of such value that they should take funds away from other services. Arguments of this kind are volatile and painful, but we will have to have them.

My guess is that behavioral treatments will ultimately be shown to produce significant improvements for children with autism. I certainly hope so. In terms of managing our societal resources, I think these interventions should be part of the education sector. I'll be prepared to support increased taxes for education if that's what it comes to.


Unknown said...

Behavioral treatments have already been shown to provide significant improvements for autism as last reported by the American Academy of Pediatrics Management of Children With Autism Spectrum Disorders (October 29, 2007)

Management of ABA methods are used to increase and maintain desirable adaptive behaviors,reduce interfering maladaptive behaviors or narrow
the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations. ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community.

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of
research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive
behavioral intervention programs in university and community settings.29–40 Children who receive early intensive
behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40

Reviews by the NYSDOH (2005), the MADSEC (Maine) Autism Task Force Report (2000) and the Office of the US Surgeon General (1997) reached similar conclusions about the effectiveness of ABA as an autism treatment.

Jim Sabin said...

Dear Autism Reality -

Thank you for this informative post.

The studies and reports you cite are just the kind of material that is needed for informed deliberation about health benefits, whether in the U.S. system of competing insurers or a European system of universal coverage.

I am not an expert on autism research, but my expectation from experience in psychiatry is that a focused behavioral program like ABA will indeed be seen as effective over time. When effectiveness is agreed upon, policy makers will have to decide what is part of society's obligation to provide educational services and what is part of society's obligation to provide health or medical services.

It could be that the behavioral services themselves would be best served by being part of a comprehensive education and socialization program. But the health sector is often a more promising place to look for funding, given that we do not have budgets for health care the way we do for education.



eric said...

What makes a treatment a treatment? What differentiates it from a supportive home, creative and adaptable parents? If a parent gave up their job to stay home with the autistic child, would that yield the same results as the "treatment?" If it did yield the same results as the treatment, should we pay the parent to stay home? If the parent demanded payment from society for taking care of their child in the style to which they are accustomed (mcmansion and porsche), should we pay for it?
Helen Keller's parents could afford an Annie Sullivan. But the parents of my retarded patient could not, nor could the daughter of my stroke patient. Yet these parents and this daughter have taken beautiful care of their loved ones, with little public assistance, and great personal sacrifice.

Jim Sabin said...

Hello Eric -

Your question about what makes a "treatment" a "treatment" is important. Health insurance typically contrasts "treatment" to "custodial care." The distinction is most difficult to make when the activities that constitute the treatment are on a continuum with activities of ordinary life, as with psychotherapy and physical therapy.

One distinguishing feature is whether professional skills are required to conduct the activity. If what was required to foster the targeted functional improvements for a child with autism was good parenting, we would not expect health insurance to pay. I know from psychologist colleagues that they often consult to families to help parents develop a program of care. Their professional time might be covered by health insurance. The parents' time wouldn't - not because it isn't difficult, demanding and health promoting, but because society has largely chosen not to pay parents for carrying out parental functions.

Your question has been battled over again and again with regard to psychotherapy. It's complicated. Norman Daniels and I wrote about this in the 1994 Nov/Dec Hastings Center Report -"Determining 'Medical Necessity' in Mental Health Practice." Woody Allen's old films made psychotherapy into a joke - with the Allen character whining endlessly about his troubled love life.

The practical controversy for autism I touched on in this post is deciding who should pay for programs that have characteristics of preschool or school, but also have characteristics of hospital-like behavioral interventions - families (when they can), the educational sector, or the health sector. My view is that the services most closely resemble special education and, if adequately funded without undermining "regular education," would thrive best in the education sector.

Thanks for your very thoughtful comments!