by Maria Giovanna Faiella
The Parent Project guide “Orienting oneself among the rights” (useful to all) to extricate oneself from unclear rules and procedures: from how to activate the necessary supports at school, to benefits for “fragile” workers and family caregivers, to how to obtain the civil invalidity and the «104»
People with Duchenne muscular dystrophy face daily barriers not only architectural but also social, health, cultural, which limit their full participation in community life and activities. Hence the choice of the theme “Break down the barriers”, in order to raise awareness of institutions and public opinion, on the occasion of World Duchenne Dystrophy Awareness Daywhich occurs on September 7.
Furthermore, information on the benefits to which those suffering from Duchenne muscular dystrophy are entitled is often lacking (or unreliable), from protection in the workplace for “fragile” workers and their family members, to the necessary support to be activated in the field school, up to how to obtain civil invalidity and the Law «104».
The guide
A compass to help patients and their families to extricate themselves between rules, often complicated procedures and unclear information, is the guide of the Parent Project-National Association of people and parents with children with Duchenne and Becker muscular dystrophy, «Orientation between rights. Disabilities, norms and opportunities: useful advice for people with muscular dystrophies and their families», valid, in general, also for those who have a disabling disease or a disability.
Comments Carlo Giacobini, expert in rights and disabilities, who edited the handbook: «With Parent Project we wanted to propose an information tool calibrated on the needs of people with muscular dystrophies and their families, focusing a lot on a clear and understandable language but also guaranteeing the accuracy of the suggestions and the indication of the sources. It is a way of responding to widespread “misinformation” and fake news circulating on the web and on social networks”.
But here are some practical indications on topics of common interest.
Civil invalidity and Law 104
First of all, even if you suffer from a pathology or a genetic condition that is very evident and proven by many certificates, without the formal recognition of the disability you will not get any of the benefits or aids provided for this condition. It should be remembered that thecivil disability (Law n. 118/71) and the state of handicap (Law n. 104/92 and subsequent amendments) are the main legal instruments for the protection of people with disabling pathologies and disabilities. To access the various benefits provided for by the regulations, it is necessary to obtain recognition from the competent administrations, following a
specific procedure with various steps: the first is to contact the family doctor to electronically send INPS the introductory certificate attesting to the exact nature of the disabling pathology, the diagnosis and the conditions of the patient.
Invalidity gives the right, on the basis of the recognized percentage, to the corresponding benefits provided for by law; among others: registration in the special lists for targeted placement, free prostheses and aids, exemption from the co-payment for National Health Service services, economic benefits of a welfare (and not social security) nature.
Checks and allowances
In particular, the guide clarifies various forms of specific aid, such as: attendance allowance (for minors), monthly assistance allowance, disability pension, carer’s allowance, specifying who is entitled to what, what are the conditions ( health or even economic) to obtain these benefits and how not to lose them.
Permits and leave
Other protections are provided for by Law «104» to facilitate the social, family and work integration of people in a disadvantaged condition due to the disease: in particular, the connotation of «gravity» (art. 3 paragraph 3) gives the right, among the other, to benefits such as: paid work permits for workers with disabilities (and family members who assist them), the possibility of choosing the place of work closest to one’s home, extraordinary leave of up to two years during the working life for assisting a person with a severe disability.
Targeted placement
The guide contains, in addition to the normative references to facilitate the employment of people with disabilities (Law n.68/69 and subsequent amendments), also practical indications for people who can access this system of supports and rights, such as, for example, the procedure to follow to register for the targeted placement lists: the first step is the request for verification of the conditions of disability pursuant to Law 68, which must be made in addition to the already available certification of disability or handicap.
How to read the minutes
The handbook offers practical indications on how to read the disability and handicap reports (drawn up by the medico-legal commissions at the end of the assessment process) to understand which benefits are due. Then you will find the answers to the most common questions, for example: the fact that the month and year of the inspection are indicated in the report does not mean that all the concessions will lapse from that date.
How to activate the supports needed at school
A chapter of the booklet is dedicated to the school, with practical advice for parents and clear indications on the paths to follow to activate the necessary supports, more or less intense and variable according to the age of the student, his conditions, the type and school grade. These are often complicated procedures that involve various steps: the first requisite is the recognition of disability in the developmental age for the purposes of scholastic inclusion, which it is advisable to request at the same time as the assessment of the handicap; then the drafting of the functioning profile is necessary – to be requested from the multidisciplinary assessment unit of the ASL – finally the individualized educational plan (PEI) is prepared.
Discounts and bonuses
The guide contains information not only on the various types of tax concessions on some expenses, products and services that people with disabilities (or their family members) have to bear precisely because of their condition, but also on how to benefit from some national and regional contributions and other bonuses (also for family caregivers).
Inps guidelines
Evaluating the impact of genetic diseases, such as Duchenne or Becker muscular dystrophy, in the daily life of those who suffer from them, without specifically knowing these rare pathologies and their complexity, can lead doctors themselves to underestimate their consequences.
To facilitate the assessment by the medico-legal commissions for the purpose of recognizing civil invalidity and handicap, INPS published specific guidelines in 2019 drawn up by its medico-legal coordination. The Parent Project had also requested them following numerous reports from patients and their families who denounced the lack or limited access to benefits and protections due to the lack of knowledge of these rare pathologies on the part of the Commissions, as well as the differences in evaluation between Regions or even from one Commission to another.
Main indications
In the handbook “Orienting yourself among rights” it is first of all clarified that, while not a “law”, they are nonetheless guidelines. For this reason, when summoned to an examination by the medico-legal Commission, it is advisable to always produce good specialist documentation in your possession, which will then be filed for evaluation purposes. Of course, the INPS guidelines have an important impact in practice. Among other things, they provide detailed indications on how to evaluate walking and the daily acts of life and, more generally, to establish the most correct status. In particular, with respect to the recognition of the accompanying allowance to the minor with Duchenne dystrophy who is still walking, it is specified that not only the mere ability to take steps should be evaluated, but the fact that the functional deficits may be such as to impede the ability to perform daily tasks independently, for example getting up from the ground or climbing stairs. In these cases, the Guidelines recommend, the conditions exist for the granting of the carer’s allowance.
Review visits
Again: for minors recognized as holders of accompanying allowances, the exemption from any subsequent check-ups, even random ones, must be indicated in the report. Furthermore, always with regard to the revision visits made to check the condition of disability or handicap, the Parent Project vademecum underlines that, based on the indications of the INPS, the revisionability must never be foreseen, regardless of the condition or age . The family will request a new evaluation if they believe that there is a worsening of the conditions.
September 7, 2023 (change September 7, 2023 | 07:18)
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