We want (have the right) to work !

Chronic diseases and professional life

Many people with a chronic disease work or want to work. However, people affected by these diseases are still too often outside of any professional activity, either because they are unfamiliar with the integration structures and devices maintaining employment, either because operators insertion and employers don’t have at their disposal all the tools and information facilitating access to work of these people; or finally because stigma and discrimination faced on the workplace severely limit their job retention.

That is why “[im] Patients, Chronicles & Associate” formulates the following claims :

– Simplify and improved access devices and job retention of people affected by chronic disease.

– Improved information on these devices.Existing information is now spare and inaccessible. It takes a lot of energy, time and perseverance to get it, and more to understand and enforce (and those, for people affected, but also social workers who accompany).

– Innovations should be conducted in the work organization. We can mention for example the partial teleworking, occasional or total among methods of work organization that will enable people affected to accesss to work conditions more suitable to their situation.

It is good to remember, in prior, that contrary to popular belief and although the development of chronic diseases is partly due to an ageing population, chronic diseases largely affect the working population. For information, and not to mention that people in long-term Affection “ALD”, in absence of other available figures from to 20 to 60 years account over a third of people with “ALD” in 2008.

Willing and able

For the vast majority of people, the onset of the disease has a negative impact on professional activity. Some of us no have choice to stop purely and simply to work (and accept the consequences in terms of socialization and in terms of income for himself and his family). For those who continue to work, many problems arise.

First, you have to manage the juxtaposition of health concerns and professional concerns. D’abord, il faut gérer la juxtaposition des préoccupations de santé et des préoccupations professionnelles. Then, it is necessary to coincide a schedule of disease management with a work schedule. With fatigue associated with Ensuite, il faut réussir à faire coïncider un emploi du temps de prise en charge de la maladie avec un emploi du temps professionnel. With the fatigue caused by the disease, it is often difficult to all reconcile (leasure time and socialization is usually the first waiving, reinforcing isolation).

It is often necessary to look for a job adapt to the constraints of treatment and medical monitoring, for example consider a part-time job, job retraining, to negotiate a arrangement, or even to move closer to places of care, etc. When it is not possible, the rest time can be overwhelmed with care and the need to coordinate, leaving a fatigue that is in addition to the disease, playing negatively on health and on work : maintaining professional activity can also be done to the detriment of care.

The stereotyped ideas

Negative representation and discrimination also play an important role. Beyond job losses, excluded from work and refusal to hire in which it can be the source, it also force sick people to silence. The consequences, here again, are numerous : to prohibit to request an arrangement of post to not mention her illness, excluding myself from the workplace for fear of having to answer to questions, to justify constantly, or is not being reconized for its skills. This fear of judgement (unfortunately justified) carry heavily and opposes anticipation nevertheless necessary in workplace : oftenly, it is cornered to the urgent needs arrangement of work posts is requested.Despite legislative measure in place, hiring discrimination persist.

This is why “[im]Patients, Chroniques & Associés ask to be led a information work and heightening awareness on disability situations. Project « evolutive chronic Pathology and workplace », origin of coalition « [im]Patients, Chroniques & Associés » has demonstrated between 2002 and 2006 that formation of insertion operator , local inter-community work and awareness of company stakeholders would change the negative perceptions and thus facilitate insertion and retention in employment of people living with these diseases. But this project also highlited that for many actors (Unions representatives, employer, some insertion operators, doctors work, etc…). This reflection on disabilities representations and the specificities of evolutionary disability situations posed by chronic diseases is not successful.

Lack of information

Moreover, lack of information and the unawareness among both employers (and all professional actors, the human resources, employee representatives, unions, than to many social worker and also to work doctor, lead to unfortunate underutilization insertion assistance devices and their limitations and job retention. On the subject, « [im]Patients, Chroniques & Associés » published a guide taking stock of a number of existing devices and their limitations, and which bring together the available information, practical and therorical, enlightened by the view and the experience of people affected.

But shortages are so deep, in this area it seems that an large national action is necessary for all players in the world of work and all professionals responsible for helping and support chronically ill in their project, especially to work, or informed of existing devices and the implications of their use for those involved.

Need continuous and innovatrice adaptations

Despite their will and their need to work, exercise a professional activity in working conditions unsuitable can become progressively impossible for people with cystic fibrosis, cancer or multiple sclerosis. In this field, we have the right to except improvements not only in terms of utilization of existing devices, but also in terms of innovation concept in methods and work organization.

For example, « Patients, chroniques&Associés » leads an advocacy for the development of teleworking in all its forms, interesting option to allow job maintenance of a number of people with chronically ill. It can also be an insertion factor in some situations, because it can be proposed at the hiring. It can also be an insertion factor in some situation, because it can be proposed to hiring, even it’s still rarely the case in France (it can be attached to the proposition rather than the person, away from all the risk of inability to workstation). Benefits are various and can answer different constraints : it can afford to save on displacement, avoid environmental aggraving factors of some diseases, it can also be a solution for those of us who need frequent or constant care. From this point of view, telework should not in our view as inauspicious to social cohesion : it can indeed the maintaining employement of persons for whom job les sis the major risk of socialisation. A personalized and flexible adaptation of working hours according to the constraints related to the disease is also a solution in some circumstances.

It is a question of implementing for people chronically ill in profesional field a logic otherwise largely built and developed in other fields : that of compensation. Defined by the National Fund of Solidarity for Autonomy makes also well aware of the logic in action : « aid or assistance package of any kind made to a person suffering of substantial alterations and substainable of physical condition, intellectual or psychic to improve activities of daily living and social life. And this regardless of age and explaining factor of the need help for autonomy of the person ».

But, sometimes it also possible to do even better : reduce further the risk of discrimination, self-exclusion preserve more the possibility of people not to divulge their illness if they don’t want to. It’s the case when the workplace creates a favorable environment to the « diversity », for all, including for a person chronically ill. If this possibility doesn’t necessary exist in all fields and all disability situations, the establishment of forms of partial teleworking for all employees in some companies, or the creation of firms entirely operating in the form of telework can be an example.

Innovations are necessary in this field, how to implement and replicate also best pratices.

Discussion

Be recognized as « disabled », what issues ? 

The health of a chronically ill person can be modifie during his life, and move from a situation without specific disability to disability: by their sustainable and evolving nature, chronic diseases generate indeed disability and important personal difficulties, professional and social. Get the recognition of these disabilities and difficulties can allow access to specific rights : Recognition of disabled workers and rights that go with it ; a disability compensation benefit covering (at least partly) expenses related to this situation (material human assistance, transportation, etc…), a disability card, or disabled adult allowance (“AAH”).

But we can wonder on what makes that only a relatively small proportion of chronically ill people who may claim to do. Three major factor seem to emerge

Some people don’t know. Indeed, information about the rights of people with disabilities is still far below the needs, especially if we consider the complexity of the devices and their eligibility requirements. It is necessary to, access to devices and benefit for people with disability, know the structure to which address, but also conditions, deadlines, contacts, and forms etc…The information need is obvious and the partial failure of “Departmental Home for Disabled Persons” (“MDPH”) also: “the single desk” which should constitute “THE MDPH” was supposed to solve this problem, we are at the moment far from this goal. Others can not. The problem is essentially in the support. Considering the complexity of devices and procedure, it does not take much for not being able, materially or psychologically, to go through the process and tireless.repetitions. the system and its procedures are complex, difficult to integrate and understand, the requested documents are numerous and should be properly argu and documented. If we do not benefited from the support of a professional social work, an association or person close (sometimes already exhausted, the disease being a strong isolating factor), we may be unable to access to its rights. Finally, the instability of the incapacity also raises a problem : some people can not access assistance simply because their disability is too fluctuating to be at “the rhythm” of the review of the field by the referent structures.

Lastly, and it’s certainly the situation that carries with it the most questions: some don’t want. Representations about disability without doubt play a significant role and it is certain that a higher public awareness of disabilities situations experienced themselves, or a part of them. For some, the label “disabled person” is too heavy to carry in front of their families or society; for adults, the guilt of the disease too internalized for they “authorize”. But we must also recognize the right of everyone not to seize an opportunity. If the possibilities opened by the “MDPH” and the other disability stakeholders “not do the job”. It is sometimes simply necessary to note it.

We see the cursor between lack of information, guilt, representations, lack of support and autonomous decision is difficult to read and handle. We can only plead, in the light of these findings, a more flexible offering, more listening, less schematic and systematic as possible. We must go further in adaptation to chronic diseases, their many faces and needs of people living with. We draw on the expertise, we, associations of people affected, in the experience of our mobilizations and actions, and we ask in this field as in others, that this knowledge is resumed at their account by all the structures which we are users.

Article from the magazine « Vivre comme les autres » by « [im]Patients, Chroniques & Associés » 2nd edition – 2011