Thursday, October 30, 2008

Economic Self-Sufficiency

My son is now 18 years old and a senior in high school. We are struggling with what happens after high school—work preparation and self-sufficiency. One of the greatest impediments to our planning is that health insurance coverage is dependent on either full-time employment by a large employer or his being deemed by the government as “permanently and totally disabled.” For millions of young persons with special needs, they are neither. Cindy Smith, CHADD’s public policy specialist, attended a conference on this topic. Below is her summary.

This week I attended the Asset Development Summit for Persons with Disabilities and Their Families and launch of the Real Economic Incentive Tour for 2009. These events were sponsored by the National Disability Institute and other partners in Washington, DC. The development of personal assets is a topic I thought about frequently as I transitioned from school to work and back to school, and like many students made the decision to borrow the necessary funds to pay for my education. My experience has been remarkably similar and yet incredibly different from my peers with disabilities.

No one ever encouraged me to apply for public benefits, no one ever discouraged me from working. It was always assumed, barring some unforeseen circumstance, that I would finish school, find full-time employment, pay back my student loans, and begin slowly to save for my eventual retirement, and accumulate the funds needed to pay for my other life goals such as owning a house, taking a vacation, paying the living expenses of my children. Why is this not the same story for youth and adults with disabilities? Why is it that working-aged adults with disabilities are three times more likely than their working aged adults without disabilities to live at or below the poverty line?

The all-too-familiar story I have heard while answering the phones at legal services organizations was echoed at the Summit: the story of not going to work because of the fear of losing cash benefits, health insurance, and possible discrimination because of disability.

One of the Summit’s overarching goals was to increase awareness of a paradigm shift that is beginning—the shift from the belief that people with disabilities must live in poverty to the belief that people with disabilities can and should be able not only to lead economically self-sufficient lives by being able to work, but also to develop assets. Mechanisms are developing to allow this shift to occur—for example, the use of tax credits such as the Earned Income Tax Credit, the development of financial literacy programs such as America Saves, and the creation of waiver programs by Medicaid.

Tobey Davies, who directs the Center for Community Economic Development and Disability at Southern New Hampshire University, presented case studies that documented the ability of people with disabilities to use a combination of resources in order to meet their goals of buying a home or taking a vacation. The silos of progress have a long way to go before they are fully realized and our society becomes one in which people with disabilities can lead economically self-sufficient lives within their communities. Currently, over half of taxpayers with disabilities in the United States have incomes at or below $20,000 and an additional 27 percent have incomes under $40,000. Progress is slow but is starting to occur. Resources are available to assist people with disabilities in developing, retaining, and growing their assets. More information on this topic can be found here.

Cynthia A. Smith, MS, CAS, JD, is CHADD’s public policy specialist.
You can read this blog and others like it at the HealthCentral Web site

Wednesday, October 15, 2008

Reducing Discrimination in Health Insurance

Come new health insurance plan implementation in January 2010—yes, that’s 2010—arbitrary and discriminatory health insurance treatment of many mental disorders will cease. CHADD has been very involved, with the entire national mental health community, in getting the Congress of the United States to pass mental health parity. Mental health parity is a legal means prohibiting insurance discrimination based on a mental or substance abuse disorder. Influencing public policy to assist people with AD/HD and related disorders is a major purpose of CHADD.

In 1996, Congress passed a “partial” mental health parity law that prohibited annual and lifetime expenditure limits on health insurance coverage of mental health treatment. The 2008 law prohibits differences between coverage for mental health and physical health treatment with regard to copayments, deductibles, and number of visits. While the new law became effective in October 2009, most health plans take effect in January. Thus, you will see this reflected in health plans in January 2010.

The law sends a positive message reducing the stigma against mental disorders. The enforceable law establishes federal public policy to eliminate overt discrimination against and to increase treatment for mental disorders. But there are gaps in the law.

The New York Times cited federal officials who said the law would improve coverage for 113 million people, including 82 million in employer-sponsored plans that are not subject to state regulation. Employers who employ fifty or fewer people are not covered by the law. The law does nothing for those without health insurance. The law allows a company to apply for a cost exemption if the company can demonstrate a greater than two-percent increase in actual costs the first year.

Not every condition listed in the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association, is covered. Health plans have discretion on which conditions to cover. While advocates of this provision typically cite such things as caffeine intoxication and sleep disorders resulting from jet lag, at CHADD we know of health plans that do not cover adult AD/HD. Until the published science is as sound for adult AD/HD as it is for childhood AD/HD, there will be plans that will not cover adults. CHADD continues to advocate a better science base for the diagnosis and treatment of adult AD/HD.

The law allows the “management” of health benefits and the cost estimates underlying the law assume “managed care.” We will likely see more tightly managed mental health benefits, meaning claims by the health plan’s management agent that treatment is not “medically necessary” or “clinically appropriate.” But under the new law, insurers must disclose their criteria for determining medical necessity, as well as the reason for denying any particular claim for mental health services.

So, we have made a significant step forward in helping people with AD/HD, particularly those with more complex cases of AD/HD, and those with co-occurring disorders. But we will continue to need public policy advocacy to deal with barriers and obstacles. We will continue to need a more solid science base. CHADD’s financial resources are currently under stress, given the economy. We encourage you to help CHADD in our advocacy efforts.

Copies of the new law, HR 1424 (which will be published as P.L. 110-343), are available here; see pages 117-129.


Friday, October 3, 2008


As my son grows and develops, certain challenges become a barrier to his happiness and success and other challenges fade or diminish. How much his responses result from learning and maturity, and how much is the result of professionally provided interventions, who can really tell? One thing has been constant for Andrew—most new situations cause significant anxiety.

Here I am speaking about clinically significant anxiety that gets in the way of normal life functioning. All of us face anxious moments. But Andrew’s anxiety is ongoing; it ebbs and flows and gets in the way of his enjoying and succeeding in life.

Statistically, the overwhelming majority of children with AD/HD have co-occurring disorders. When Andrew was a little guy, one summer he was afraid to leave the house because he feared bugs and bees flying around. A structured, consistent multi-intervention program helped him overcome these fears. But he can still get a little anxious when flying insects are buzzing by. For a young man approaching age eighteen, anxiety has social consequences. Social situations are probably the biggest anxiety-producing situations for Andrew. He can get really uptight.

Andrew has been blessed with a good sense of humor and we have built a variety of family, church, community, and professional supports for him. These reduce anxiety and allow him to grow and mature. Parents need to be on the lookout for symptoms of severe or chronic anxiety, and obtain a professional assessment if necessary. As with any health and developmental challenge, act quickly to avoid longer term consequences. Andrew’s transition to ninth grade was extremely difficult, and nothing worked for him during that period. He began developing other symptoms, such as depression and hostility. When we changed his environment (which took an entire school year), the depression and hostility disappeared and his normal good humor and gentle nature returned. But changing the environment meant change, and change increased anxiety. He hated the change at first. But it was very helpful in the long run and Andrew now recognizes this.

Andrew still is not great at recognizing his anxiety and taking positive steps to deal with it, but he is learning. Situations that enhance his self-esteem help his ability to deal with anxiety. Situations that reduce his self-esteem make his anxiety worse. Getting his teachers and other professionals to recognize this and consistently act is always a challenge.

The last few weeks have brought a great deal of anxiety about the financial markets for all of us. I hope you are okay in dealing with these uncertain economic times. I hope you will continue to think of supporting CHADD when you can. I hope you will attend CHADD’s upcoming conference, which will offer research-based information to help you deal with the challenges AD/HD and mental and learning disorders can present. And I hope you will take quick action if you see yourself or your loved ones having anxiety so severe that it is interfering with success and happiness. Try to look at the bright things in life.