When fidgety Philip grows up

Summary

introduction

When « Fidgety Philip » grows up, the problems of attention deficit disorder can multiply.

Attention-deficit hyperactivity disorder (ADHD) in adulthood is a serious health problem. In fact, ADHD has been called one of the most common undiagnosed psychiatric disorders in adults.

The actual application of the ICF (la CIF pour les intimes) is as yet somewhat limited because the World Health Organization (WHO) endorsement is so recent; the earliest references using the ICF correspond with the WHO’s 2001 endorsement.. Standardized application of the ICF in North America has yet to be realized in anticipation of the release of the clinical implementation manual (Reed et collab., 2005).

Current developments suggest that the disability community supports the conceptualization of disability in the most recent iteration of the ICF (Hurst, 2003; Threats & Worrall, 2004). Hurst (2003) traced the thinking about persons with disabilities before and after the formulation of the ICIDH in 1980, including the ICF in its present iteration.

Other authors have explored the ICF’s potential for use by rehabilitation professionals working with individuals with cognitive disorders. Arthanat, Nochajski, and Stone (2004) presented information on cognitive disorders, including prevalence, functional manifestations, and the assessment of a person’s cognitive functioning, and the applicability of the ICF’s holistic classification and coding of cognitive dysfunction within the components of Body Functions and Structures, Activity and Participation, and Environmental Factors. They concluded that the coding system systematically organizes measures related to cognitive status and the resulting functional outcomes. Therefore, the ICF has the potential to classify and interpret cognitive deficits on a global level and thereby reflects on the overall health and functioning of the individual in major life activities.

There are significant differences, sometimes of an ideological nature between and within different professional groups (Cooper, 1997; Hughes, 1999; Maras & Redmayne, 1997). These differences can be exaggerated through training and practice and are often reflected in different professional perceptions and views of ADHD. Differences can sometimes result in confusion, misunderstandings and conflict and may have an adverse influence on the effectiveness of multi-disciplinary/agency working. However, there is also much common ground among professionals, especially in terms of sought after outcomes of intervention. ADHD by its very nature demands a multi-agency response, and provides an opportunity for medical, educational, psychological, social work and other professionals to work together. It is essential, therefore, that a set of common assumptions and a definition are agreed and used by all groups, and that these reflect the multi-faceted nature of ADHD. The involvement of a full multi-disciplinary team in each case of ADHD, though ideal, is likely to be constrained by resource, practical and logistical factors. Assessment should always reflect the multi-faceted nature of ADHD taking into account the biological, social, emotional and psychological features of the phenomenon. Thus assessment should be multi-modal and involve professionals from a range of disciplines.

When a multi-professional team is not available, those who are involved need to be well versed in the roles and practice of professionals not represented. Consultation between agencies, disciplines and professionals should take place in order to disseminate information on the roles and practices of the different groups. Shared knowledge and understanding of each others practice and roles is essential to understanding the complex nature of ADHD as a medical, psychological and social phenomena.

The ICF provides a good outcome monitoring and evaluation tool for the assessment of treatment response. As in many other disorders, diagnosis alone is not a sufficient predictor of health care needs, utilization, costs, or outcomes. When one adds disability as a predictor, our capacity to predict these parameters is increased dramatically. It is therefore suggested that the ICF framework be considered in future ADHD research activities.

The ADHD Child

The health care system must evolve from one designed to deliver predominantly acute, episodic care to one appropriately designed to delivery high quality care for individuals with chronic conditions. In Attention-Deficit/Hyperactivity Disorder alone, approximately half of the children have a co-existing neurobehavioral and learning disorder. The high prevalence of multiple conditions increases the costs of care and emphasizes the importance of care coordination and communication among health care providers in the delivery of chronic care.

Current educational and health care system is failing individuals with chronic conditions. Moreover, improving the level of quality in health care cannot be achieved by simply tinkering with current systems of care. Health care systems must develop organizational capacity to support the redesign of care processes.

The health care system fails children and adolescents with chronic conditions. Chronic care requires an integration of the medical, rehabilitation, and social models. An assessment of functional status and environmental conditions as well as health status is appropriate in chronic care and serves as the basis for management planning and for the assessment of health outcomes.

Often cure or recovery from the chronic condition is out of the question. Functional status contributes substantially to the patient’s quality of life, self-reliance, and social integration. Chronic care requires an integration of the medical, rehabilitation, and social models. An assessment of functional status and environmental conditions as well as health status is appropriate in chronic care and serves as the basis for management planning and for the assessment of health outcomes.

The International Classification of Functioning, Disability and Health (ICF) is a comprehensive classification and coding system for how health-related conditions affect people’s lives. The ICF is a potential tool for the clinician in expanding from strictly medical diagnoses and management for clinical improvement to individualized assessment and management for clinical and functional improvement. The wide range of issues that can be addressed within the framework warrants the label « wholistic » care.

The newly released ICF-Children and Youth version has been designed specifically for children up to 18 years of age. The results of functional classification with the ICF can be integrated with medical and mental health diagnoses in a multi-axial assessment of the patient, providing a standardized and therapeutically relevant description of the individual with chronic conditions through a number of domains or axes. Each functional problem requires its own plan for intervention. Functional classification is compatible with other reform efforts, such as the Medical Home initiative. Routine use of functional assessment and classification in the care of children with chronic conditions will lead to a comprehensive or « wholistic » approach to the child and family. The International Classification of Functioning, Disability, and Health (ICF) provides a conceptually-driven diagnostic and statistical manual that can be used at the clinical and public health levels to assess and monitor functional outcomes.

In adult medicine, the ICF has been used to assess general or clinical populations for the purposes of generating epidemiological data, planning public health programs, and clinical planning for individuals. In general, the ICF opens up many possibilities for evaluating the impact of health conditions and their treatments on children in terms that relate directly to needs for resources and service

An approach that could integrate traditional medical diagnoses with functional classification and evaluation of social conditions is the multi-axial assessment system.

New approaches, strategies, and systems are required to meet the needs of children with chronic conditions.

The ADHD Child AND the Familly

« A substantial proportion of children with ADHD continue to meet full criteria for ADHD as adults. A multivariate risk index comprising variables that can be assessed in adolescence predicts persistence with good accuracy » (link).

« Child ADHD elicits high levels of parental stress and maladaptive parenting. The presence of parental psychopathology is common and influences the parent’s response to the child’s ADHD symptoms. Optimizing parent-child interaction and parental psychiatric status may improve outcomes for both parent and child » (link).

Psychopathological environment and dysfunctional parenting, is a high risk factor for mental heath outcome. Intergenerational psychopathology may also contribute, influence, and even exacerbate comorbid psychiatric disorders of ADHD impaired subject.

Recent research suggests that combining medical and behavioral therapies is an especially effective approach to treating ADHD and its comorbidities. However, information on the long-term effects of all treatments is lacking, as is knowledge of the effects of long-term use of ADHD medications in children. On-going, systematic monitoring of ADHD, comorbidities, and treatment modalities is needed. What social and economic impacts does ADHD have on families; schools; the workforce; and judicial and health systems?

The ADHD Child and Caregiving

Parents of children with disabilities engage in exceptional caregiving responsibilities, which differ from typical caregiving responsibilities on several dimensions. Most importantly, family members spend a significant amount of time arranging care for their children with disabilities (HHS, 2008). Exceptional care needs of children with disabilities are ongoing, can persist throughout childhood into young adulthood or beyond, and are more frequent and intense than the care needs of children developing typically (Lewis, Kagan, & Heaton, 2000b; Porterfield, 2002; Roundtree & Lynch, 2006).

Such children use health and related services on average two to eight times more often than children without these conditions. Health care systems and clinical practices are poorly designed to deliver high quality health care to children with chronic conditions. Reform efforts such as the Medical Home and the Improving Chronic Care Model have been shown to improve clinical outcomes but more progress is needed.

Stigmatization is a commonplace experience for persons with disabilities and their families. Due to stigmatization, adults and children with disabilities experience prejudice, stereotyping, and discrimination that affect all areas of their lives, creating physical and social isolation, and limiting opportunities to live fully integrated lives in the community (Goffman, 1963). Their family members also face courtesy stigmatization (stigmatization by association) in many domains of their life, especially those where their children are involved, such as community settings, mental health systems, and schools. Family members have often reported being subjected to discrimination and exclusion due to their association with the child with a disability (Corrigan, Markowitz, Watson, Rowan & Kubiak, 2003).

In contrast to caregiving responsibilities for children with typical development, exceptional caregiving responsibilities for children with disabilities can increase rather than decrease as children become older, and care needs frequently, rather than occasionally, create disruptions at work. (Kagan, et al. 1998; Kagan, Lewis, & Brennan, 2008; Roundtree & Lynch, 2006). Work disruptions are crisis-driven for these parents and require them to make substantial family and work adjustments (Gallimore, Coots, Weisner, Garnier, & Guthrie, 1996; Roundtree & Lynch, 2006).

The ADHA Child and Academics

Because of the significant overlap between ADHD and academic under-achievement, one might expect that there has been considerable research into nonmedical interventions to enhance academic functioning. However, this is not the case.

ADHD and Adulthood: employment outcomes and social participation and task performance

As the parent of a young adult with a significant disability we have been lulled into thinking that public programs would support access to job coaching and life long learning activities to enhance employment and community living. Successful people with learning disabilities are aware of the types of problems they have. They are open and specific about their difficulties and understand how they affect their lives. Most important, these individuals have the ability to compartmentalize their disability. That is, they are able to see their learning difficulties as only one aspect of themselves. Although they are well aware of their learning limitations, they are not overly defined by them. Successful individuals with learning disabilities recognize their talents along with accepting their limitations. In addition to recognizing their strengths, weaknesses, and special talents, successful adults with learning disabilities are also able to find jobs that provide the best fit or « match » with their abilities. Unsuccessful people with learning disabilities, on the other hand, often fail to recognize both their strengths and limitations, accept their difficulties, compartmentalize their learning disability, and find employment that provides the best fit for their abilities.

Successful adults with learning disabilities are generally actively engaged in the world around them — politically, economically, and socially. They participate in community activities and take an active role in their families, neighborhoods, and friendship groups. Additionally, they often step into leadership roles at work, in the community, and in social and family settings. Successful persons with learning disabilities also believe that they have the power to control their own destiny and affect the outcome of their lives. Successful persons with learning disabilities also show the ability to make decisions and act upon those decisions. Additionally, they assume responsibility for their actions and resulting outcomes. When things don’t work out, successful individuals generally take responsibility for the outcome and do not blame others. A willingness to consult with others while making decisions is also characteristic of successful people with learning disabilities. In that connection, they also appear to be flexible in considering and weighing options. In contrast, unsuccessful individuals often do not recognize that situations can be altered, or that multiple solutions may exist. Instead, they are either passive, making no decision, or conversely, stick rigidly to a simplistic, rule-based decision even if it ultimately fails. Successful individuals, on the other hand, take responsibility for both the positive and negative outcomes of their decisions and actions.

Successful individuals set goals that are specific, yet flexible so that they can be changed to adjust to specific circumstances and situations. These goals cover a number of areas including education, employment, family, spiritual and personal development. In addition, the goals of successful persons with learning disabilities include a strategy to reach their goals. That is, they have an understanding of the step-by-step process for obtaining goals. Most importantly, successful people also appear to have goals that are realistic and attainable.

Many successful people with learning disabilities set at least tentative goals in adolescence, which provide direction and meaning to their lives. While successful individuals with learning disabilities have concrete, realistic, and attainable goals, unsuccessful individuals often have vague, unrealistic, or grandiose goals that are not in line with their strengths, weaknesses, or special abilities.

ADHD and Work Life

The successful workforce participation of families of children with disabilities has been linked to the flexibility found in their workplaces (Rosenzweig, Huffstutter, & Burris, 2003).

Employed parents caring for children with disabilities often find the integration of work and family responsibilities very challenging (Kagan, Lewis, & Heaton, 1998; Rosenzweig, Brennan, & Ogilvie, 2002). Child care arrangements are hard to find and maintain, routine health care appointments must often be scheduled during parents’ workdays, children’s health or mental health crises can disrupt working hours in unpredictable ways, and special education arrangements must be established and updated. As a result, employers may lose the benefit of these parents’ valuable experience, knowledge, and skills when families cannot marshal the supports they need to take care of their children with disabilities while maintaining their employment (Powers, 2003; Rosenzweig & Huffstutter, 2004).

For families with children who have disabilities, the challenges and barriers to work-life integration can be overwhelming and the solutions elusive. The concept of work-life integration emerged largely as a result of continuous change in workforce demographics, the changing nature of paid work, and concomitant changes in the structure of the family. The challenge of combining paid work and family life initially was framed as an issue of « work and family balance, » with the primary focus on working mothers. Work-life integration is a more inclusive idea, encompassing not only the domains of workplace and family, but additional life domains, roles, and responsibilities within the community for both men and women (Lewis, Rapoport, & Gambles, 2003).

Work and empolyment

ADHD is a neurobehavioral disorder characterized by pervasive inattention and/or hyperactivity-impulsivity and resulting in significant functional impairment. The prevalence and effects of adult attention-deficit/hyperactivity disorder (ADHD) on the performance of workers: results from the WHO World Mental Health Survey Initiative. Adults who have ADHD generally become bored easily, are disorganized, have trouble with self-control, and have difficulty regulating their emotions and behaviour. Other problems may co-exist with the disorder as well, including: chronic lateness, poor time perception, low self-esteem, anxiety, depression, mood swings, employment difficulties, relationship problems, substance abuse, risk-taking behaviours, and poor time management. But people with ADHD have so much trouble staying focused and controlling their behaviour that it affects their emotions and how well they do academically or in other areas of their lives. In fact, ADHD is often viewed as a learning disorder because it can interfere so much with a person’s ability to study and learn.

Most people think of Attention-deficit/hyperactivity disorder (ADHD) as a children’s problem, but when it continues into adulthood people have a problem coping with the workplace and need assistance. Several studies done in recent years estimate that between 30 percent and 70 percent of children with ADHD continue to exhibit symptoms in the adult years.

ADHD is an impairing and although it is common, <20% of adults with ADHD are diagnosed or treated. Differential diagnosis of adult ADHD can be challenging because ADHD symptoms may overlap with other psychiatric disorders and patients may lack insight into their ADHD-related symptoms. Adults may not be able to provide a history of onset of symptoms during childhood, and it may be difficult to confirm that ADHD symptoms are not better accounted for by other comorbid psychiatric conditions. ADHD can negatively affect outcomes of other comorbid psychiatric disorders, and ADHD symptoms may compromise compliance with treatment regimens. Furthermore, unrecognized ADHD symptoms may be mistaken for poor treatment response in these comorbid disorders.

The question arise as to ascertains if ADHD people are destine to work as workman, or if they are able to access professional jobs. Does the mere presence of ADHD is an obstacle to achieve a professional career?

ADHD was more common among males than females and less common among professionals than other workers. Also, ADHD was associated with a statistically significant 22.1 annual days of excess lost role performance compared to otherwise similar respondents without ADHD. The majority of the lost performance was associated with reductions in quantity and quality of work rather than actual absenteeism.

A workplace accommodation may be requested by an employee with a disability at any time during employment. After initiating the workplace accommodation process, the individual and the employer should discuss the request. There are several considerations when determining reasonable accommodation requests, including the demands of the job, the employee’s skills and functional limitations, available technology, and cost. After both parties agree that a workplace accommodation is needed, an appropriate one must be selected.

Reasonable accommodation is any modification or adjustment to a job or the work environment that will enable a qualified applicant or employee with a disability to participate in the application process or to perform essential job functions. Reasonable accommodation also includes adjustments to assure that a qualified individual with a disability has rights and privileges in employment equal to those of employees without disabilities.

In the United State, there is the « Disabled Access Tax Credit »: This is a tax credit available to an eligible small business in the amount of 50 percent of eligible expenditures that exceed $250 but do not exceed $10,250 for a taxable year. The Americans With Disabilities Act (ADA) prohibits employers from discriminating against employees or applicants with disabilities in all aspects of employment.

The ADA protects the following employees:

  • An employee who has a disability. If an employee has a physical or mental impairment that substantially limits a major life activity, he or she is protected;
  • An employee with a history of impairment. An employer can’t take an adverse action against an employee based on his or her previous disability;
  • An employee who the employer regards as disabled. This is true even if the employer is wrong, and the employee is not actually disabled. If the employer discriminates against an employee based on its belief, the employee is protected by the ADA.

If needed, an employer must provide a reasonable accommodation — an adjustment or modification that allows the employee to do the job — to a qualified employee with a disability. The employer isn’t required to guess whether a reasonable accommodation is needed, though once an employer knows of the need for an accommodation, it must meet that need. Also, the employer isn’t required to give the employee a specifically-requested accommodation if another accommodation will do. But the employer must engage in the « interactive process » — which means a dialogue with the employee about what accommodation will meet that person’s needs.

All employees need the right tools and work environment to effectively perform their jobs. Similarly, individuals with disabilities may need workplace adjustments – or accommodations – to maximize the value they can add to their employer. Employers accommodate workers everyday – with and without disabilities – to build a loyal, dedicated and productive workforce. The workplace accommodation process is thus a primary concern and must be achieve with ADHD skilled professional help. This impairment, in conjunction with the low treatment rate and the availability of cost-effective therapies, suggests that ADHD would be a good candidate for targeted workplace screening and treatment programs. It might be cost-effective for employers to screen workers for ADHD and provide treatment, the researchers suggest. Or, is it the behavioural aspect of the disorder. Workplace accommodation process, assistance and treatment can be vital for ADHD people.

When diagnosed at the work place, the employer must engage in a Workplace accommodation process the worker so he can attain optimal performance. ADHD people are burden for enterprise because the interventions need to be appropriate for each individual’s ADHD, and learning disability subtype and, at a minimum, include the provision of:

  • specific skill instruction;
  • accommodations;
  • compensatory strategies.

So the real problem is the Workplace assistance and treatment needed to sustain an ADHD worker in a professional workplace. The Workplace accommodations, assistance and treatment processes cost money, cost time, cost human management resources, and may disturb the workplace social ambience. Some accommodations or compensatory strategies can be viewed by « normal » people as a special unfair treatment.

It would be better to think that an ADHD person as a behaviour problem, to alleviate the real problem, which is in fact, human management’s costs, performance, productivity, etc, related to the integration into professional workplace of ADHD people.

Work at Home – Telework as a reasonable accommodation

In Quebec, in 2005, the rate of unemployment in Quebec is of 8.3% for the general population and 35% for the impaired people? Interesting to note that for intercultural groups, rate of unemployment is doubled. The Chronic lack of financing for Telework in residence has disastrous consequences for handicap people? Also, lack of access to the system for health, in particular with the family practitioners, is also a long haul risk factor for chronic unemployment.

Many employers have discovered the benefits of allowing employees to work at home through telework (also known as telecommuting) programs. Telework has allowed employers to attract and retain valuable workers by boosting employee morale and productivity. Technological advancements have also helped increase telework ou eWork options. Nowadays, to have access to the Internet and the information age is not a luxury but a need more and more needed. Technologies ensuring accessibility are available, the governmental policy exists. But, we now need to step from theory to practice. When we look at closely the enormous difficulties to which the people are confronted having limitations or disabilities, in particular with the access to the health services, eWork, eLearning, buildings, technology, etc…

When such a great part of the members of society is in such a deplorable situation, and undergoes as much indifference on behalf of our leaders and decision makers, we must wonder seriously if the handicap comes from the person who lives with deficiency or from the system who excludes it almost automatically.

Not all persons with disabilities need – or want – to work at home. And not all jobs can be performed at home. But, allowing an employee to work at home may be a reasonable accommodation where the person’s disability prevents successfully performing the job on-site and the job, or parts of the job, can be performed at home without causing significant difficulty or expense.

The Internet is having a very positive impact on the lives of adults with disabilities who are online, and this impact is much greater than it is among adults without disabilities. As the number of adults with disabilities online continues to increase, the Internet is helping to greatly improve the quality of their lives. Specifically, it allows adults with disabilities to be better informed, more connected to the world around them and puts them in touch with people who have similar interests and experiences.

The main findings of this online Harris Poll[i] include (with all percentages based on adults who are online):

Adults with disabilities spend, on average, twice as much time online as adults without disabilities who are not – 20 hours per week compared to 10 hours per week;

Adults with disabilities are much more likely than adults without disabilities to report that the Internet has significantly improved the quality of their lives (48% vs. 27%);

Adults with disabilities are also more likely than adults without disabilities to report that the Internet has helped them to:

  • Be better informed about the world (52% vs. 39%) ;
  • Feel connected to the world (44% vs. 38%) ;
  • Reach out to people with similar interests as experiences (42% vs. 30%) ;
  • Conversely, adults without disabilities are slightly more likely than adults with disabilities to say that the Internet has significantly helped them communicate and socialize with close friends, relatives and neighbors (49% vs. 42%).


SOURCES & RÉFÉRENCES

[i]THE HARRIS POLL #30, (2000). Site internet visiter le 19 janvier 2009, http://www.harrisinteractive.com/harris_poll/index.asp?PID=93., Harris Interactive Inc., Rochester, NY.

Bruyère, S. M., Van Looy, S. A., & Peterson, D. B. (2005). The International Classification of Functioning, Disability and Health: Contemporary Literature Overview. Rehabilitation Psychology, 50(2), 113.

Jelsma, J. (2009). Use of the International Classification of Functioning, Disability and Health: a literature survey. Journal of Rehabilitation Medicine, 41(1), 1-12.

Raskind, M.H., Goldberg, R.J.; Higgins, E.L.; & Herman, K.L. (2003). Life Success for Children With Learning Disabilities: A Parents Guide. Pasadena, CA: Frostig Center, http://www.ldonline.org/article/12836/, http://bit.ly/1ckVVdm

The U.S. Equal Employment Opportunity Commission. (October 27, 2005). « Work At Home/Telework as a Reasonable Accommodation », http://www.eeoc.gov/facts/telework.html, http://www.eeoc.gov/index.cfmd

Taylor, H. (2000). How the Internet is improving the lives of Americans with disabilities. The Harris Poll, 30.

De Graaf, R., Kessler, R. C., Fayyad, J., ten Have, M., Alonso, J., Angermeyer, M., … Posada-Villa, J. (2008). The prevalence and effects of adult attention-deficit/hyperactivity disorder (ADHD) on the performance of workers: results from the WHO World Mental Health Survey Initiative. Occupational and Environmental Medicine, 65(12), 835–842. doi:10.1136/oem.2007.038448

Investing in People: Job Accommodation Situations and Solutions, http://www.dol.gov/odep/pubs/misc/invest.htm

Office of Disability Employment Policy (January 9, 2007). « Workplace Accommodations: Low Cost, High Impact », Cornell University ILR School, http://bit.ly/1fQbn3u

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