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DRAFT law No. 372/X CREATES the SPECIAL REGIME for the PROTECTION of children and young people with ONCOLOGICAL DISEASE explanatory memorandum the protection granted to children and young people affected by oncological disease remains, at present, be subject to the legislation in force for children and young people with disabilities.
Now, reality has shown that this legislation does not adapt to situations in which there are children and young people with cancer disease, since these specific characteristics and particular cases, unable to fit in the current protection scheme.
Specifically, at the time it is diagnosed with a cancer disease, it follows a period of intensive treatment, with several hospitalizations and visits to specialized hospitals for treatment and control of the same that usually extend in time.
In situations where the treatments are not effective in combating disease, children or young people enter a palliative and terminal phase duration variable and indeterminate, in the course of which may occur subsequent hospitalizations, as well as ambulatory periods. During these periods it becomes essential the presence and permanent monitoring of at least one of the parents.
2 the child's family or young cancer patient should also have access to essential financial resources in order to cope with the enormous expenses incurred with treatments, trips to the doctor, trips to hospitals or acquisition of necessary medication.
The allocation of a grant to the family would allow proper monitoring of the child or young person ill and would prevent any resources to financial credits, avoiding the already problematic family debt.
Thus, there is an urgent need to create a specific regime appropriate to the needs of children and young people with cancer disease, given that the legislation currently in force does not suit, conveniently, to situations of prolonged illness, during which there are periods in which it is essential to the ongoing monitoring of an adult.
Being aware of legislation that, in similar sense, has been produced in several European countries and noting the gaps and inadequacies in the Portuguese legislation of rules concerning situations referred to, it was formulating this draft law, since, with the same, a special scheme that allows to adapt the support for oncologic disease and its vicissitudes.
For all the reasons well explained, this draft law is wide social scope and is certainly a clear contribution to the humanization of society, but also a stimulus for the urgent and necessary support that children and young people with this disease do not have.
It was this understanding that led a group of members of the PSD parliamentary group to present, during the last legislative session, the draft law No. 118/X, order discussed in plenary session on 14 October 2005 and rejected shortly after voting against the Socialist Party.
Despite this first negative result, the discussion then considered legislative initiative in question allowed the various groups expressing their political agreement about the solutions which it advocated, sometimes offering alternatives and suggesting improvements. 3 Now, it doesn't seem to be excluded that the authors of so important contributions, such as raising the age of young people with oncological disease for 18 years, the strengthening of the amount of the allowance for assistance and monitoring, or the patients ' families information about the rights they enjoy, consent in the present initiative the embrace and hug.
Thus, in accordance with the rules applicable and constitutional, the undersigned members, present the following Bill: chapter I GENERAL PROVISIONS Article 1 subject-matter this law creates the special regime for the protection of children and young people with oncological disease.
Article 2 definitions for the purposes of this law: (a) ")" child or young»: Individual under 18 years of age; b) ' cancer ' disease: Disease on the list defined in the regulation itself.
Article 3 social Protection the special regime for the protection of children and young people with oncological disease cover:) the protection at work; b) the care allowance and follow-up; 4 c) for journeys for reimbursement; d) special educational support; e) psychological support.
Article 4 special scheme for the application of the arrangements provided for in this law may not result reduction of guarantees, subsidies or any other perks, for the beneficiaries it provided and applicable to them by virtue of another legal or contractual arrangement.
Article 5 the State Information and the other competent entities, public or private, shall ensure, with regard to beneficiaries of social protection regime set out in this law, the bragging rights it referred, and still pay them, in accordance with appropriate, considered all relevant information about the mode of exercise of these rights.
CHAPTER II section I Protection SOCIAL PROTECTION at work article 6 1 – Beneficiaries Are beneficiaries of protection at work, under this Section, the parents of the child or young person with cancer disease that, cumulatively: a) exercising parental authority over the child or young person; b) Live communion table and dwelling with the child or young person. 5 2-the rights assigned to the parents by this law are applicable to the adopter, guardian or person who is remanded to judicial or administrative trust of the child or young person with cancer disease, as well as to the spouse or person living in de facto union with any of those or with the parent.
Article 7 Fouls for assistance 1-the worker who is in the situation provided for in article 6 is entitled to miss work, up to 45 days a year, to provide urgent and indispensable assistance to the child or young person with cancer disease. 2-In case of hospitalization, the entitlement to Miss extends for as long as that last. 3-if there are two people covered by the protection at work, as defined in article 6, the right referred to in the preceding paragraphs may be exercised by any of them or by both in successive periods, as joint decision.
Article 8 1 parental leave – the worker who is in the situation referred to in article 6 has the right to license without retribution for a period up to six months for follow-up of the child or young person with cancer disease. 2-the license is renewable as long as the accumulated period of time not exceeding six years. 3-if there are two holders of the right provided for in paragraph 1, the license can be used by any of them or by both in successive periods, as joint decision. 4 – it is for the Government to lay down the conditions for the exercise of the right provided for in the preceding paragraph.
6 article 9 for Special Conditions 1-the worker who is in the situation provided for in article 6 shall be entitled to a reduction of 5 hours of normal weekly working period to assist the child or young person with cancer disease. 2-it is for the Government to lay down the conditions for the exercise of the right provided for in the preceding paragraph.
Article 10 Work part-time or flexibly Schedule 1 – the worker who is in the situation provided for in article 6 are entitled to work part-time or flexibly. 2-it is for the Government to lay down the conditions for the exercise of the rights provided for in the preceding paragraph.
Article 11 Remission of additional work the worker who is in the situation provided for in article 6 is not obligated to provide additional work.
Article 12 exemption from night work 1 – the worker who is in the situation provided for in article 6 is relieved of paying job among the 20 hours a day and 7 hours of the next day. 2 – to the employee referred to in the preceding paragraph should be attributed, where possible, a daytime work schedule. 3 – the employee is relieved of duty where it is not possible to apply the provisions of paragraph 7 of section II and follow-up assistance allowance article 13 aim is created a subsidy to offset the offside to work on grounds of assistance and monitoring of the child or young person with cancer disease.
Article 14 1 – Beneficiaries Are entitled to the allowance provided for in this section people which are covered by the protection at work, as defined in article 6, and which, cumulatively:) have not declared, in the previous year, revenues exceeding 100 monthly national minimum wages, when married, or 50 monthly national minimum wages, when not married; b) are eligible for parental leave, provided for in article 8, or the right to work part-time, provided for in article 10, provided that not less than 50% of the normal working hours. 2 – households in which, in accordance with the provisions of the preceding paragraph, more than one person is receiving, only one of them can receive the subsidy. 3-If, in the same household, any more than a child or young person with cancer disease, can a second beneficiary, pursuant to paragraph 1, obtain the subsidy, too.
Article 15 Amount
The allowance provided for in this section consists of a monthly corresponding to 70% of the reference remuneration of beneficiaries, with the maximum of two monthly national minimum wages.
8 article 16 Claim 1 – beneficiaries may, at any time, request the allowance provided for in this section. 2-the application is presented by the solidarity and Social security services in the area of residence of the person concerned.
Article 17 Duration 1 – the allowance provided for in this section shall be granted for a limited period, not less than 30 days and not more than 6 months. 2-for the purposes of determining the period of duration shall be taken into account: a) the gravity of the clinical situation of the child or young person with cancer disease; b) predictable need for hospital admissions, treatments, consultations, as well as the distance of the respective movements; c) the economic and social situation of the household. 3-the grant is renewable at the request of the person concerned, since they keep their allocation assumptions, up to a maximum of accumulated time of six years.
Article 18 1 Extinction-the entitlement to the allowance expires 7 days after the occurrence of any fact that causes the loss of beneficiary. 2 – beneficiaries who lose this condition shall, within 7 days after the occurrence thereof, they shall immediately inform the services of solidarity and Social Security. 3-non-compliance with the preceding paragraph determines the return of amounts paid from the occurrence of the fact that caused the loss of beneficiary, without prejudice to penalties that can fit under another legal provision.
9 section III Participation in movements for article 19 1 Beneficiaries – is beneficiary of the involvement in the movement the treatments provided for in this Section the child or young person with cancer disease. 2-is also a beneficiary of the reimbursement referred to in the preceding paragraph plus one, provided that subject to the provisions of article 21.
Article 20 Costs subsidised 1 – are only subsidised expenses for journeys exceeding 20 km between the residence and the place where this is transported. 2-If the movement takes place on public transport, is provided in its entirety the value of shipping expense in economy class. 3-If the movement takes place in private transport, the value of reimbursement with the shipping expense is fixed by the Government. 4-for the purposes of the preceding paragraph are only subsidised travel that the patient has actually accomplished, not counting the kilometres that the carrier can charge for return to the place of departure without the client.
Article 21 1 as subsidiary – expenses incurred by chaperones of children and young people with cancer disease, in movements for treatments, consultations and other medical assistance related to this disease, are only subsidised in case of insufficient human resources or materials of their social unit, or in case of lack of specialized services needed. 2-for the purposes set out in the preceding paragraph, instructed by physician assistant, the competent authorities issue a credential. 10 3 – if applicable, the credential will indicate the reasons for which the patient must go accompanied.
Article 22 1-Refund recipients must request the reimbursement provided for in this Section with the institution of medico-social unit that covers. 2 – the request for reimbursement must be accompanied by the credential provided for in paragraph 2 of the preceding article, as well as the evidence of the costs incurred. 3-the right to reimbursement shall expire within 90 days of the date on which expenses were held.
Section IV Special Educational Support article 23 special educational Measures 1 – children and young people suffering from oncological disease benefit from the following special educational measures: a) special equipment for compensation; b) curricular Adaptations; c) special conditions of evaluation; d) pedagogical Support plus. 2-special educational measures are intended to benefit the frequency, contribute to learning and school success and encourage the full integration of children and young people with oncological disease. 3-the application of the measures provided for in paragraph 1 shall be carried out on a case by case basis, taking into account the specific characteristics of the disease and the limitations of the student. 4 – the competence and the technical criteria for the application of special educational measures are set by the Government in its own diploma.
11 article 24 special equipment of special equipment are considered compensation of compensation compensation devices individually or group, including: the Auxiliary optical or acoustic); b) computer equipment adapted; c) wheelchairs.
Article 25 1 curriculum Adaptations – considered curricular adaptation exemption from the activity that is impossible to perform due to the oncological disease. 2-curricular adaptation provided for in this article shall be without prejudice to the fulfilment of the overall objectives of the cycles and levels of education attended and is only applicable when it is found that the use of special equipment is not sufficient compensation.
Article 26 special assessment Conditions are considered special assessment the following amendments to the common education) type of test or assessment tool; b) Form or means of expression of the student; (c)); d) date and place of execution.
Section V psychological support 12 article 27 pedagogical Support plus the pedagogical support plus additional academic support consists of individualized or small group and has a temporary nature.
Article 28 beneficiaries are receiving psychological support: a) children and young people with oncological disease; b) persons who meet the requirements laid down in article 6.
Article 29 1 Location – the psychological support provided for in the preceding article is provided in the hospital itself or where the patient is hospitalized or receive the treatments. 2 – If the support provided for in the preceding paragraph cannot be carried out, the psychological support is provided via health centres and hospitals in the area of residence of the household.
CHAPTER III transitional and final provisions article 30 entry into force this law enters into force on 1 January 2008.
13 Article 31 Regulation the Government will regulate this law within 90 days.
Palácio de s. Bento, February 2007 Members
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