The conditions most often referred to as attention deficit disorder (ADD) and attention deficit hyperactive disorder (ADHD) affect anywhere from eight million to 12 million Americans, according to some estimates. However, a large percentage of these individuals has never received a proper diagnosis, and many experts suggest that even those in treatment for the condition are often receiving less than optimal care.
Part of the problem is that both children and adults with ADD/ADHD often have other, related problems as well, ranging from specific learning disabilities to behavioral health problems such as depression and anxiety.
In most of these cases, treatment requires much more than a visit to the doctor’s office or a prescription or two. Rather, it may also require ongoing involvement on the part of teachers, coaches, therapists, and other specialists.
Given that these needs do not fit easily into the traditional healthcare delivery model built around 20- minute office visits with a single provider, a group of specialists has begun to offer an alternative approach that attempts to deliver under one roof all of the different forms of care that a person with ADD/ADHD might need. Now available in four cities, with plans for rapid expansion in the near future, ADD Health and Wellness Centers are not only attempting to give patients and their referring providers the kind of multidisciplinary approach to treatment that guidelines recommend, but also collecting the kind of data that the company’s founders hope will soon give providers more definitive answers about the types of therapies that are most effective for this unique population of patients.
Care is fragmented
The healthcare challenges that go along with ADD/ ADHD are strikingly similar to the difficulties associated with other chronic conditions that require multidisciplinary care, according to Robert Baurys, who is now the CEO of ADD Health & Wellness Centers but previously built a company focused on providing care to patients with fibromyalgia and fatigue. “Like our previous business, the number of people who are diagnosed, or are in the process of being diagnosed or misdiagnosed is almost identical,” he says. Further, he emphasizes that in both cases, the highly fragmented nature of healthcare in this country is a huge obstacle to effective treatment.
With respect to ADD/ADHD, Baurys points out that it is typical for there to be several practitioners who don’t talk to each other working with a family. “It is an enormous disconnect, and our firm belief is that people are willing to pay a premium if services are very coordinated and customized to their needs.”
Whether the approach will be successful remains to be seen, but Baurys points out that the four ADD Wellness Centers now open in Boston, Dallas, Austin, and Houston, have amassed a caseload of 700 patients in a little more than five months. And although referrals are coming from traditional providers, school guidance counselors, and even employers, the lion’s share of families working with the centers comprises families who initiated contact themselves.
An accurate diagnosis is essential
It seems logical that the first step in working with a new patient is getting an accurate diagnosis, but this is a task that is not always done well in the community, according to Theresa Lavoie, PhD, the director of psychology services at ADD Health & Wellness Centers. “For us, that means understanding what symptoms are [attributable] to ADHD and which symptoms aren’t,” she says, noting that many conditions, such as sleep disorders, for example, are associated with attention difficulties but are not ADHD. “Additionally, very often what is co-occurring with ADHD, such as depression, anxiety, or a learning disability, is overlooked and not treated.”
To get an accurate diagnosis, Lavoie explains that most patients will undergo a comprehensive neuropsychological evaluation, a process that includes a variety of standardized tests and procedures designed to give clinicians a good sense of an individual’s cognitive and behavioral abilities. “This always begins with an extensive assessment of someone’s history, so we are looking at clinical history, family history, medical history, academic history, and a general sense of current functioning,” says Lavoie, noting that this initial phase of the evaluation is typically conducted by a psychologist or social worker.
Some patients will not need any further evaluation, but in many cases, patients will then be referred on to a neuropsychologist, who will administer an extensive battery of tests to, among other things, identify discrepancies between an individual’s capabilities or IQ and his or her academic or work-related performance. “[This part of the evaluation] also looks at attention very thoroughly,” adds Lavoie. “We are looking at sustained attention, divided attention, the ability to shift one’s attention, auditory attention, and visual attention.” This is particularly important, she stresses, because many people with ADD/ADHD have difficulty with organization, time management, problem solving, and higher-order reasoning.
Treatment planning emphasizes strengths
The results of the neuropsychological evaluation will determine what interventions come next for most patients. In the case of children or teenagers, Lavoie notes that these interventions often include contacting the school system to request certain accommodations and working with parents to help them understand their child’s needs both in the classroom and at home. Additionally, many patients are referred to a physician for further evaluation—especially in cases in which the psychologist or neuropsychologist believes that medication may offer some benefits.
“Very often, parents are resistant [to putting their child on medication],” says Lavoie, but she still often makes the referral so that parents can, at least, become more educated about when medications can be helpful or not helpful, and get their concerns addressed. In addition, Lavoie points out that physicians also conduct nutritional assessments, offering families guidance about dietary strategies that can help patients compensate for their difficulties with attention. For example, although skipping breakfast can affect anyone’s energy level, Lavoie stresses that these difficulties are exacerbated in a person with ADHD. Similarly, she explains that by guiding families toward more proteins and less carbohydrates, patients can avoid some of the spikes in energy, characteristic of some people with ADHD, that are typically followed by emotional valleys or what Lavoie refers to as “crashes.”
Beyond the initial evaluations and consultations, Lavoie notes that most patients continue to come to the ADD Health & Wellness Centers as often as once or even twice a week for therapy or coaching or to attend regular support group meetings. In many cases, these activities are aimed not so much at providing treatment but rather at helping patients develop strategies they can use to overcome the obstacles that go along with ADD/ADHD.
Lavoie refers to the larger process surrounding these activities as asset-based treatment planning. “What we are talking about is helping people understand what their strengths are and how to use them to maximize their performance, achieve their goals, and to function most effectively,” she says.
This may involve helping a child or teenager break down large tasks into small pieces that they can accomplish over time. In the case of an adult, it may involve assistance with career planning.
Interestingly, although most people associate ADD/ ADHD with children, Lavoie estimates that 40% of the company’s patients are adults. Many of these individuals have difficulty holding a job, and others may be highly successful at work but have experienced years of difficulty with managing relationships in their personal lives.
Curiously, Lavoie notes that a high percentage of the adult patients who come to the centers for help are entrepreneurs. “If we have a group of 10 people, in almost every instance, seven or eight will be self-employed,” she says. “They may be very successful but struggling with an aspect of ADHD.”
Adults with ADHD come with complications
Treating adults with ADD/ADHD often comes with extra layers of complications, according to David Rabiner, PhD, a senior research scientist at Duke University in Durham, NC, who has done extensive work focusing on interventions for ADHD. “For many adults, they didn’t just develop ADHD; they have had it throughout their lives, and in the absence of any treatment, that often leads to a variety of difficulties,” he says, noting that issues such as depression, anxiety, and substance abuse are not uncommon in these individuals, and they need to be addressed along with the core ADHD.
In addition, Rabiner points out that clinicians usually don’t have the same kind of insight into how the person has functioned throughout his or her life or access to as many sources of information with an adult patient. “When you are [dealing] with a child, you often know how they are doing because you have the child there, and you are speaking to their parents and teachers,” says Rabiner. “But when you are speaking to a 25- or 35- year-old adult, your only source may be that adult.”
Despite a growing awareness of ADD/ADHD in adults, Rabiner suggests that internists may not be as attuned as pediatricians are to the problem. And he notes that there is no question that there is a large population of undiagnosed adults who could benefit from treatment.
Consequently, although Rabiner is not involved with the ADD Health & Wellness Centers, he believes that the idea of offering a cadre of care services and interventions, all coordinated from a central location, is attractive in the case of both adults and children.
“In many communities, if parents want to get good, state-of-the-art evaluation and treatment for their child with ADHD, they just don’t know where to go,” he says. “There are some pediatricians who do an excellent job with this, but there are others who just don’t have the time or experience to do that, and there are many kids with ADHD who have more complex kinds of cases where a multi-model approach that incorporates a number of different interventions may be quite necessary.”
Outcomes data will offer specifics
Finding state-of-the-art care is difficult in many communities, but the biggest obstacle to effective diagnosis and treatment of ADD/ADHD may well be the reimbursement policies of payers.
Although some children with less complex cases respond well to medication or straightforward behavioral therapy, Rabiner points out that few traditional practitioners have the time to carry out the kind of thorough, comprehensive approach to evaluation and treatment recommended in guidelines that have been established by the American Academy of Pediatrics.
Although the ADD Health & Wellness Centers do not submit claims but rather provide clients with the appropriate paperwork to handle that aspect themselves, Lavoie acknowledges that clients have had great difficulty obtaining reimbursement for neuropsychological evaluations and some of the other services as well. Also, Baurys points out that clients with preferred provider organization coverage tend to have better success at obtaining out-of-network reimbursement for services than do clients with HMOs.
However, by collecting and publishing outcomes data, Baurys is hopeful that traditional payers will ultimately see value in the multidisciplinary approach offered through the centers. To assemble these data, personnel from the centers plan to test clients at no charge every 90 days, looking at parameters that correlate highly with attention as well as depression, anxiety, quality of life, and self-reported symptoms.
When this information is reported in conjunction with financial data, Baurys believes that traditional payers will take notice.
“When people come to us . . . we see how many tests they have had, how many times they have been to different therapists, and how many medications they have changed back and forth. You just see an enormous waste in the system,” he says. “I think as we publish our outcomes data, and we can show specifics . . . about what people are getting, we will have a much firmer foot to stand on in terms of validating [our position] in the marketplace.”