Changing Public Policy Where You Live

CHADD recently collaborated with sister family advocacy organizations demonstrating that you, working with others, can change government policy where you live.

During the past eleven months CHADD has participated in a state public policy advocacy project in collaboration with the National Health Council (NHC). CHADD Pennsylvania, a collection of unpaid volunteers who initially met in January 2008 and officially organized in June 2008, was able to secure the introduction of legislation in both the Pennsylvania state senate and state assembly to allow part-time college students with disabilities to continue health insurance coverage under their parents' policies. Click here for details on the Pennsylvania legislation.

A 2007 National Health Council survey found that only one percent of those affected by chronic illnesses and disabilities are advocates on behalf of "patient advocacy organizations." An objective of NHC and CHADD is to increase citizen participation in governmental issues.

CHADD is one of fifty voluntary health agencies/patient advocacy organizations that belong to the National Health Council. "Voluntary" health agencies are those governed by non-compensated volunteer boards of directors. "Patient" advocacy organizations are those who advocate for a single illness, disability, and disorder. CHADD was one of four VHAs selected to receive staff technical assistance to influence state or local legislation. The other three were Alopecia Areata Foundation, Epilepsy Foundation, and Huntington's Disease Society.

The key to success in state and local public policy advocacy depends on four tasks:

1. Break Down the Walls - Involve consumers and families in advocacy work; Create a work group.
2. Identify an Objective and Secure Resources - Organize and target resources to the objective.
3. Maximize "Inclusion" - Make noise - Develop strategies and tactics.
4. Stay Focused - Stay on message - Implement your targeted objective.

Click here to read the entire NHC report, Grow Your Grassroots and Better Influence Public Policy: Strategic Advocacy Plan and Case Studies From the National Health Council.

Keep at it.

Clarke

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.

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.

Clarke

Anxiety

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.

Clarke

AD/HD Awareness and Avoiding the Gift/Difference/Disability Debate

This is AD/HD Awareness Week. We are delighted that the United States Senate passed, for the fifth consecutive year, a resolution recognizing an AD/HD Awareness Day—September 18, 2008. To read the resolution, visit thomas.gov and search for S. Res. 649. See our Web site for CHADD’s activities to promote awareness during this week.

A CHADD member benefit is receipt six times a year of our award-winning Attention magazine. Attention offers advice and information about AD/HD from scientists, families, and advocates. The October 2008 issue includes an article by CHADD volunteer leader Gina Pera titled, “Dealing with Denial.”

Many of us get upset and uneasy when people portray AD/HD as “gift,” as a “difference,” or as a “disability.” We each think about our own family experience and challenges when people generalize and make simplistic claims about the disorder. Gina offers five guidelines to keep in mind about dealing with denial, one of which is, “Avoid getting stuck in the gift-or-difference debate.” I have a strongly-held view about this debate, based on my son’s lifelong experience, but this can easily distract us.

Gina’s second guideline offers the most important element of this dynamic to me personally: “Is the behavior creating distress for the person? Is it impairing the person in important areas of life functioning (relationships, school, work, ability to manage basic needs)?” And Gina poses a related question: “Is it creating havoc for their loved ones?”

As we attempt to better inform ourselves and the public about AD/HD, I encourage you to become a member of CHADD, to receive our magazine six times a year, to have access to magazine archives going back as far as 1998, to receive information and support, and to be part of an advocacy movement that influences and shapes public policies. Join us in our effort to build a social movement of support for persons with AD/HD and related disorders.

Clarke

Medical Homes for Children with Special Healthcare Needs

My family has been fortunate in many ways. With great health insurance, we selected a pediatrician several months before our son was born. For almost eighteen years we have benefited from having the same pediatrician. He is knowledgeable, accessible, friendly, convenient, and well-connected to the specialist community in the Baltimore-Washington area. He is comfortable referring us to needed specialists and is motivated to integrate specialist knowledge into my son’s overall interventions.

CHADD endorses the concept and experience of a “medical home” (clinical home/healthcare home) for children with special healthcare needs as defined, implemented, and advocated over the past decade by the American Academy of Pediatrics. As defined by AAP, medical homes are about a single medical practice taking ownership/responsibility to coordinate interventions for children with special needs, whether those children have either complex needs or a variety of needs.

The essential elements of a medical home for children with special healthcare needs are:
• Personal physician in a culturally and linguistically competent physician-directed medical practice who provides continuous and comprehensive care
• A focus on the “whole” child, youth, and family with coordinated care/services/supports
• A family-driven partnership that ensures a coordinated network of community-based services where both physicians and families share accountability for quality improvement through a performance measurement system
• A focus on transitions to ensure no disruptions of services as children and youth progress through normal stages of growth and development
• Privacy-protected, family-driven electronic medical records for communication with youth and families, and consultation between treating professionals.

My son has had numerous health and developmental/learning challenges over his lifetime. What I want to see happen is every child in America having access to a pediatric practice that meets the essential elements of a medical home as defined above. This is also a “hot” topic in Washington’s debate over healthcare reform. A topic for another day is all the issues and challenges with this model. I am very actively involved in these medical home public policy debates. CHADD also supports the Putting Patients First campaign of the National Health Council, an effort to promote care coordination through electronic medical records.

I have recounted to CHADD audiences many times my son’s challenges and our frustration, even with a great pediatrician, in coordinating and integrating professional information in helping my son. I asked a CHADD-Pennsylvania volunteer leader, Kirsten Leonard of West Chester, to share her experiences in accessing, coordinating, and integrating professional help for our children. Both our families have seen a variety of professionals over time. Both our families benefitted from participating in early intervention programs. One thing Kirsten and my wife Beth have in common is that despite access to great professionals, they are the care coordinators. Their families are fortunate that Kirsten and Beth have the time, ability, knowledge, and resources to so coordinate. Think of all the parents in our society who don’t have the time, ability, knowledge, or resources to coordinate professional services for their family members. The medical home model is designed to make such information sharing and coordination less burdensome on the family and more a medical practice responsibility.

I asked Kirsten some questions about coordinating interventions and moving toward a medical home model.

Did your child have needs for services and interventions beyond a single medical professional?

Yes, although the qualifier here is what is considered “medical.” Our son was born with very low tone and increased deep tendon reflexes. He also suffered from extreme gastroesophageal reflux. He qualified for the North Los Angeles Regional Center as an at-risk infant. The Regional Center is a private, nonprofit organization providing services and supports to persons with developmental disabilities and their families. The Regional Center provided our son with physical therapy to increase his tone. When he was eighteen months old we decided to put him in an Early Start program through the Santa Clarita Valley SELPA. Until he was three years old this program coordinated all of his services which included physical therapy, occupational therapy, speech therapy, behavioral therapy, and counseling. While they were happy to speak to all of our son’s medical doctors, they did not really coordinate services his medical services.

Which other professionals attempted to meet your son’s needs?

We also worked very closely with his gastroenterologist, allergist, and pediatrician. Most of his “medical” intervention was coordinated by me. Sometimes we used the services of a neurologist and a developmental pediatrician. Our family also sought the counsel of a psychologist who was trained to help families of children with special needs.

What role did the primary medical practice engage in to coordinate these interventions?

None.

As a mom, what obstacles, challenges, and frustrations did you face in getting services coordinated (even integrated)?

I believe that we were luckier than many families. The Early Intervention program our son was in was awesome. They were our point people for all of his needs with the exception of his medical services. I served as his case manager with all of his doctors, which was somewhat frustrating. In my opinion, the biggest obstacle to overcome was gaining the doctor’s respect. Many members of the medical establishment treat parents as though they are ignorant and not worthy of being an equal member of the “team.” The other major hurdle was that each specialist liked to lay claim to whatever was going on with our child. For instance, our son exhibited behaviors that were not appropriate for a three-year-old child. He hit other children a lot! The gastroenterologist blamed the behavior on the fact that he was in pain from his GERD and was acting out. The allergist stated that the behavior was probably due to allergies. The neurologist said that he was PDD-NOS, while the developmental pediatrician diagnosed AD/HD. In truth, all of these things were components of the problem, but none of these specialists were correct in isolating their own area of specialty as the sole cause of the behavior. As the case manager, it was up to me to keep a “whole-child” perspective to determine what was really going on. It would have been nice to have a medical professional on our team who could help other professionals to see the big picture!

How were medical records shared/coordinated/even integrated?

They really weren’t. Each specialist would write up a report that was sent to our son’s pediatrician. Sometimes, they would confer on the phone with the pediatrician as well.

Given your experiences, what, ideally, do you want to see happen to benefit other families whose children will be experiencing similar challenges as those you faced?

I truly believe that the best course of action is built upon a model that looks at the needs of the whole child. I think of it as one-stop shopping, where medical professionals from all of the specialty areas are under one roof and work together as a team to best meet the needs of the child and the family. Families with children who have any kind of special need are way too taxed in their day-to-day life with the child to have enough energy to serve also as the case manager. They need to be able to rely on a trusted medical professional to act in this capacity.

I am more than willing to share the story on the excellent care that we received when our son was young; however, I do not believe that our experience fits exactly with the medical home model. I have read through the articles you wrote about your story with Andrew, and I believe that our experience might be closer in line to yours than a true "medical home."


I would like to personally thank Kirsten for her willingness to share her personal experiences and story. Only by sharing can families educate and help other families. This is part of CHADD’s mission: consumers and family members supporting other consumers and family members.

Clarke

Accomplishment and Self-Esteem

AD/HD is frequently characterized by an inability to stay focused on a task—repeatedly and significantly. The Sunday, August 17 issue of the New York Times featured an article on Michael Phelps, “AD/HD Didn’t Keep Phelps From Finding His Focus—On the Gold.” Teachers throughout his early school years observed that Michael could not focus to achieve goals. Yet, no Olympian has won more medals than Michael.

My son Andrew is 17. First identified at age 11 months as having developmental delays, Andrew has always had significant trouble staying focused on the task at hand. And he still faces attention challenges. Yet, this summer, he obtained and succeeded in his first paid job. His self-esteem has increased while mastering what the world expects—gainful employment. No Olympic medals, just modest but meaningful goal attainment. To Andrew, his mother, and me, these are significant.

Robert Brooks, PhD, has emphasized at CHADD conferences over the years the need for each of us to have and use our "islands of competence." As Andrew grows and matures, his islands of competence continue to expand. He is still very anxious, still socially awkward, still has learning challenges, and still has major doubts. But he is succeeding.

It’s interesting to read the many stories about Michael Phelps. Teacher after teacher told Michael’s mother that he could not focus, he could not stand still, he could not be an academic success. But he was academically okay and his island of competence was swimming—and now he is the greatest swimmer of his generation and holds the most ever Olympic medals. It’s important for people living with AD/HD to pursue interests they enjoy and at which they excel. Phelps’ success demonstrates that being a part of a supportive family, setting goals, engaging in enjoyable activities, and receiving positive feedback are all important in building self-esteem. Phelps is clearly an exceptionally talented athlete and a source of pride for the millions of people affected by AD/HD.

Andrew’s goals are much more modest. This summer he participated in a summer school program where in the mornings he focused on getting ready to pass “No Child Left Behind” state standardized exams so he can graduate next year from high school. In the afternoons he assisted the school’s IT director—for pay—by loading new software on school and faculty computers. Loading computer software is now an island of competence. In the late afternoons and evenings he enjoyed field trips, including attending four minor league baseball games.

Those who know us and those who have read my previous blogs know that Andrew and I share a passion for baseball—for the Baltimore Orioles, for the Boston Red Sox, and for the two major league players we have met through CHADD who are connected to AD/HD, Scott Eyre and Jeff Conine. This summer Andrew took his passion and joy for a sport and turned it into paid employment. Through friends at church, Andrew applied to the Bowie Bay Sox—the Anne Arundel County affiliate of the Baltimore Orioles, ten minutes from our home. This weekend Andrew began his employment as a main gate ticket taker. He has to arrive an hour before the gate opens. He has to help set up the gate area. He has to get organized to retain the ticket stubs after taking them. He has to be patient and friendly. His work is done by the top of the fourth inning, and he gets to see the last five-plus innings of the game. It’s not Olympic gold, but it is normal life and attainment of a life goal—paid employment in an arena that he enjoys.

With support, focus on a goal, and effort, people with AD/HD can succeed. Some receive New York Times coverage. Some are worth a good feeling inside and hope for the future.

As you struggle with your own AD/HD or as you struggle with your family member’s AD/HD, be satisfied with every little step toward success and happiness.

Clarke