Ask the experts

These specialists in public policy and child welfare, representing different professions, have responded to a sample of readers' questions posed either through the mailbag or through the discussion board. If you have additional questions or reactions, you can email staff writer Patricia Wen directly at wen@globe.com. | More

David Autor

An economics professor at Massachusetts Institute of Technology, Autor has written about Social Security and other federal benefits programs, as well as the labor market and wage inequality. He is editor of the Journal of Economic Perspectives.

Q. What is your single biggest concern about the SSI program for children - and how would you suggest resolving it?

A. I have two major concerns about the trends in the SSI program for children that are carefully documented in Patty Wen's article. First, I am concerned about the perverse incentives created by the program to label children as disabled, to upgrade diagnoses beyond the warranted level, and potentially to over prescribe and overuse psychotropic medications. This has a number of long term, adverse consequences. Labeling children as disabled is likely to diminish adults' expectations of their potential for achievement, and also potentially diminish children's own expectations of what they can achieve in life. This can harm their long-term prospects as productive adults. Of course, excessive use of medication is intrinsically undesirable.

My second concern is that the perverse incentives in SSI that potentially lead to inflated reporting of mental disorders in children and overuse of SSI benefits have the potential to erode public support for what is an extremely important and generally worthwhile social insurance program. Without SSI, hundreds of thousands of children and adults with unambiguously severe disabilities, such as blindness, renal disease, cancers, etc., would be indigent. If SSI is perceived to be a hidden welfare program rather than a medically-based disability program, popular and Congressional support for this program could ultimately be threatened.

The solution to this problem does not rest with the Social Security Administration. As the SSA officials interviewed in the story correctly articulate, SSA is carrying out the will of Congress as written in the law. Only Congress can change the criteria used for screening SSI cases. In fact, Congress did this not long ago in response to the explosive growth of SSI following the Zebley decision. But the dike did not hold. Congress probably needs to revisit this issue to consider carefully what mental disorders should qualify for SSI award. It is also critical that Congress authorize adequate funding for regular reviews of these cases. Not spending adequate resources to review these claims is as foolish as cutting funding to the enforcement arm of the IRS (something that Congress has also done). All of the pitfalls of the SSI program are made dramatically worse when SSA is not given adequate resources to monitor appropriate program use.

Q. Any ideas we should be borrowing from abroad to change this program?

A. There are many good examples from other countries of how to better design adult disability programs to reduce perverse incentives and encourage work rather than dependency. Recent disability reforms in the Netherlands provide a leading example. I am not aware of any relevant examples for children's disability programs in other countries. But that does not mean there aren't such example; this is merely testimony to my ignorance.

Q. A Boston reader asks: Why not pull the children's SSI program out of the Social Security Administration?

A. I do not think that SSA is doing a poor job in administering SSI given what it has to work with. The issue is not faulty program administration but faulty program design. Congress needs to update and clarify the screening criteria for the SSI children's program, and to and provide adequate resources for ongoing case review. If these resources were provided, my feeling is that SSA would do at least as good a job as any other government agency in managing this complex program. I would not want this job done either by the Post Office or the U.S. Military. I would not feel any more comfortable if it were outsourced to the private contractors.

Distributing large dollar amounts of valuable public benefits is always a delicate task: on the one hand, it's critical to get resources to deserving individuals as expeditiously as possible while minimizing the burdens placed upon them; on the other hand, supplying generous benefits to the public creates unlimited demand. No matter what entity is running the program, the job of performing accurate and fair-minded gate keeping without harming the most vulnerable individuals is intrinsically hard.

Marylou Sudders

President of the Massachusetts Society for the Prevention of Cruelty to Children, Ms. Sudders is a former state Commissioner of Mental Health. She has a master's degree in social work and serves on several nonprofit boards, including for the Pine Street Inn.

Q. What is your single biggest concern about the SSI program for children - and how would you suggest resolving it?

A. Lax oversight and open-ended benefits jeopardize the credibility of this much needed program. The best government programs are transparent, fair and equitable with a clear system of checks and balances. As a first step, the determination of eligibility process must be revised to be clear and consistent with regard to process, documentation requirements and decision justification. The process should include interviewing/checking primary references in addition to interviewing the applicant. There should be a system of peer review to increase inter-reliability of decision making to increase consistency and quality across the program. In addition, there must be a system of periodic reassessments that is fair and equitable; if resources are scarce, then there should be a random sample across diagnostic categories that is statistically significant.

My biggest concern is that our current mental health system is fragmented and does not support the needs of the child and their family. For some families, caring for a child with a serious mental disorder and navigating the "system" is a full time job and prevents them from holding paid employment. For these parents, financial support is necessary to ensure that the family is safe, meets basic family needs and is healthy. I would not want to see more barriers imposed.

Q. A social worker from Cambridge complains that school systems pressure parents to medicate their children. Do you see this as a problem - and is it the proper role of teachers?

A. Children with mental disorders and their families need well coordinated, community based services and supports to help them function at home, in school and in the community. Schools and teachers play a key role in a child's development and learning. Schools/teachers must work in partnership with parents and in conjunction with others involved in a child's life (doctors, clinicians, coaches, other caregivers as appropriate) with parental consent. Teachers are capable of and should identify challenges to a child's ability to learn, which should then trigger a broader assessment and potentially the development of an Individualized Education Plan (IEP). Only a qualified physician, in partnership with parents, can make a determination about the appropriate use of medication.

Q. An Arlington woman asks: Do you think powerful US pharmaceutical companies play a role in pushing psychotropic medications on all children, particularly the poor?

A. In the US , medications are more readily available than high quality and accessible community based mental health services. According to a 2008 study by the University of Maryland, American children are about three times more likely to be prescribed psychotropic (this includes antidepressants, anti anxiety medication, mood stabilizers and stimulants) medications such as Prozac and Ritalin than European children. The study found that 6.7 percent of American children had been prescribed some form of psychotropic medication, compared to 2.9 percent of Dutch children and 2 percent of German children. More specifically, the study found that American children are about four times as likely to be prescribed stimulants and five times as likely to be prescribed antidepressants.

Most medications used to treat young people with mental illness are safe and effective. However, many medications are used “off-label” and have not been studied or approved for use with children. Researchers are not sure how these medications affect a child's growing body. More research is needed on how these medications affect children and adolescents. While researchers are trying to clarify how early treatment affects a growing body, families and doctors should weigh the benefits and risks of medication. Parents should ask their child’s doctor questions about the risks of starting and continuing their child on these medications. Learn everything they can about the medications prescribed for their child. Learn about possible side effects, some of which may be harmful. Know what a particular treatment is supposed to do.

That said, medication in concert with other clinical interventions, can be effective in the treatment of mental disorders in children. Clinical services and community based supports must include a continuum that includes interventions that teach coping skills and adaptive behaviors, offer after school and respite programs, inpatient and residential services. We must invest in the creation and sustenance of a high quality community based mental health system that provides accessible and high quality services for the child and supports their loved ones. Nothing less should be acceptable.

Q. A reader, Sarah, says the series may leave the impression that ADHD is an "inconvenience." Please explain how a child might behave if he or she has ADHD that qualifies for SSI.

A. ADHD is not an inconvenience; it is a legitimate disorder and can have a significant impact on a person and their family (and others). Between 4 - 6 percent, or 8 - 9 million, of the US population is diagnosed with ADHD. It is the most commonly diagnosed behavior disorder in young children, and affects between 3 - 5% of school age children. ADHD is a diagnosis for children (and adults) who consistently display certain marked characteristic behaviors over a sustained period of time. The most common core features are: distractibility; hyperactivity and/or impulsivity. This is not fidgeting! In order to meet the diagnostic criteria, these behaviors must be excessive, long term and pervasive; they appear before a child is 7 - 8 and continue for at least 6 months. In addition, the behaviors must create a signficant difficulty in at least two areas (domains) of their life, such as school, home or social situations. ADHD usually persists throughout a person's lifetime.

James M. Perrin

A pediatrician and Harvard Medical School professor, Dr. Perrin directs the Massachusetts General Hospital Center for child and adolescent health policy. He has served on several national panels reviewing the Social Security Income (SSI) program for children.

Q. What is your single biggest concern about this SSI program for children problem - and how would you suggest resolving it?

A. The program provides benefits based mainly on diagnosis (and severity). Yet, a child’s actual disability and needs may vary widely with the same diagnosis. The SSI disability program would be a good deal stronger if it provided benefits based on a child’s disability and directed those benefits to provide treatments or accommodations for the disability.

Q. What about the rise of children diagnosed with ADHD who receive SSI benefits?

A. We know more about the disability that ADHD causes than we did 15-20 years ago – it causes major problems in academic performance and social interactions. Children with ADHD typically have major problems in these areas (much more than an inconvenience) – and current treatments only partially improve the disability. For SSI, a key question is whether having ADHD and the resultant disability merits financial support of about $6,000 per year – how will those dollars meet existing needs and improve children’s outcomes. The answers are unclear, and one could argue that the disability from ADHD does not merit cash payments.

Q. A psychotherapist from Boston says he believes doctors and clinicians are often pressured by families to tweak a diagnoses to help with SSI benefits. Do you think many clinicians feel this pressure -- or are they oblivious to this potential motivation?

A. Parents often ask doctors to help them obtain benefits for their child (not only SSI). It is important, though, to realize that most children who apply don’t actually receive benefits, and physicians are wise to provide an honest appraisal of the child’s abilities and disability.

Q. A Somerville reader asks: Do you think "disabled" is too broadly defined in the SSI bureaucracy - in our society?

A. I’m not sure I know what the reader means by “too broadly.” Rates of disability among children and adolescents have grown rapidly over the past two-three decades – based in large part on major new epidemics of asthma, obesity, and mental health conditions. These conditions can create real disability, and we’re much better able to define and measure disability that we were 10-20 years ago. What is needed are much better programs of prevention along with support to young people with disability to make them as independent and productive as possible as they grow up.

Lucie Schmidt

An associate professor of economics at Williams College, Schmidt has published numerous research papers on the impact of welfare reform, and the growth of the SSI rolls. She has also worked with the National Poverty Center at the University of Michigan.

Q. What is your single biggest concern about this Supplemental Security Income program for children - and how would you suggest resolving it?

A. SSI was not initially designed to provide benefits to children - they were made eligible for the program almost as an afterthought. It was also not initially designed for the mental disorders that now make up such a large share of the caseload, and it was never intended to serve such a large population. Even social programs that are well-designed for their target groups often have unintended incentives. For child SSI, I think these unintended incentives are particularly problematic. As one example, the disability determination process was originally designed to identify physical limitations that were, compared with mental disorders, relatively easy to identify. The Social Security Administration has worked hard to update the program to account for mental disorders, but by their very nature these disorders are more difficult to identify and lead to more determinations that seem somewhat arbitrary, at least from the point of view of the families involved. The non-physical limitations are also more subject to manipulation. There is not an easy solution for this big-picture problem. Fixing it would require a detailed examination of the program as it now stands, as well as hard discussions about what resources the families of disabled children need and what an ideal program designed for disabled children should look like.

Q. An Arlington lawyer asks: Isn't welfare reform - particularly cutback on benefits and time limits - the biggest reason why more families apply for SSI benefits for children?

A. Research shows that welfare reform (in particular the stringency of a state's welfare policies) affects the likelihood of SSI participation, although we know more about the effects of welfare reform on SSI for adults than we do for children. For children, welfare reform is only part of the story. The rapid increase in the child SSI caseload actually began in the early 1990s, well before the passage of welfare reform in 1996. A more important factor was the 1990 Supreme Court decision that liberalized eligibility standards for children, particularly with respect to mental disorders. The types of these conditions that account for much of the growth in child SSI cases - ADHD, learning disorders, and speech delay - are, like most health conditions, prevalent among low income individuals. As the SSI program became less restrictive, a large pool of potentially eligible children was created. The changes in eligibility do interact with welfare reform - the lack of an alternative safety net makes SSI more desirable for families with eligible children, since it can make a large difference in ability to make ends meet.

Q. A Boston reader asks: Do you think Social Security should consider dropping the cash benefits - but keep Medicaid - so there's no perverse incentives to keep children on longer than necessary?

A. Cash benefits for child SSI recipients were originally intended to serve two purposes: 1) to help families where parents had to take time off from work to care for disabled children, and 2) to help pay for disability-related expenses. These rationales for benefits may have worked well in an era with a relatively restrictive program that primarily provided assistance to children with severe physical limitations. However, the programmatic changes over the past twenty years have dramatically altered the composition of the child SSI caseload, where a majority of recipients now have primary diagnoses of mental disorders. Despite these programmatic changes, there has been no reexamination of whether the original rationales for cash benefits still hold, or whether the size of the transfers should depend on the type or severity of the child's disability. That said, the SSI program has become a huge part of anti-poverty policy in the United States, and other forms of cash transfers are harder to come by for poor families with children. Research shows that SSI benefits for children have reduced poverty rates. Removing or reducing the cash benefit, particularly during a sustained economic downturn, could have serious negative effects on the well-being of poor families.