DRAFT LAW NO. 372 /X

CREATES THE SPECIAL PROTECTION SCHEME

OF CHILDREN AND YOUNG PEOPLE WITH ONCOLOGICAL DISEASE

Exhibition of reasons

The protection granted to children and young people hit by oncological disease continues,

currently, to be subject to the legislation in force for children and young people with

deficiencies.

Now, the reality has shown that such legislation does not adapt to situations in which

there are children and young people carriers of oncological disease, as these cases

feature specific and particular characteristics, untenable to fit

in the current protection regime.

Concretely, at the time when an oncological disease is diagnosed, it follows

a period of intensive care, with several internships and displacements to hospitals

specialized for control and or treatment of the same as, normally, if

prolong in time.

In the situations where the treatments do not prove effective in combating the disease, the

children or young people enter a palliative and terminal phase of variable duration and

indeterminate, in the course of which successive internships may occur, as well as

periods in ambulatory.

During these periods it becomes necessary for presence and follow-up.

permanent of at least one of the progenitors.

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The family of the child or young oncological patient should, equally, have access to

essential financial resources, so as to cope with the vultuous spending expenditures

with treatments, trips to the doctor, displacements to hospitals or acquisition of the medication

necessary.

The allocation of a family allowance would allow for the conditionable follow-up of the

child or young patient and, well, it would prevent possible resources for credits

financial, avoiding the already problematic family indebtedness.

In this way, urge to create a specific regime appropriate to the needs of children and

young people with oncological disease, given that the legislation currently in force does not

convenient, in a convenient way, to situations of prolonged illness, during which

there are periods in which the permanent monitoring of an adult is indispensable.

Being mindful of the legislation that, in the identical sense, has been produced in several

countries in Europe and finding the gaps and inadequacies in the Portuguese legislation of

rules relating to the referenced situations, understood to formulate the present project of

law, by instituting, with the same, a specific regime that allows to adapt the supports to the

oncological disease and its vicissitudes.

For all the reasons that are fertilised, the present draft law has broad social reach and

constitutes, surely, an unequivocal contribution to the humanization of society,

but also a stimulus for the urgent and necessary support that the children and young people

carriers of this disease lack.

It was this understanding that took a set of MPs from the parliamentary group of the

PSD to present, in the past legislative session, the Draft Law No 118 /X, diploma

discussed at the plenary session on October 14, 2005 and rejected shortly afterwards with the

votes against the Socialist Party.

Notwithstanding this first negative result, the discussion then haves on the

legislative initiative in question allowed the various parliamentary groups

express their political understanding of the solutions that the same advocated,

at times proposing alternatives and suggesting enhancements.

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Now, it does not seem to be to exclude that the authors of such important contributions, such as that of the

raising the age of young people with oncological disease for 18 years, that of the reinforcement of the

amount of the allowance for assistance and follow up or, still, that of the information to

families of the sick about the rights they are to be given, consinting in which the present

initiative the acs and abrace.

So, in the applicable constitutional and regimental terms, the deputies below

signed, present the following draft law:

CHAPTER I

GENERAL PROVISIONS

Article 1.

Subject

This Law creates the special scheme for the protection of children and young people with illness

oncological.

Article 2.

Definitions

For the purposes of this Law shall be understood by:

a) "child or young person": Lesser individual of 18 years of age;

b) "oncological disease": Constant disease of the list defined in regulation

own.

Article 3.

Social protection

The special scheme for the protection of children and young people with oncological disease

understands:

a) Protection at work;

b) the assistance and follow-up allowance;

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c) the comparticipation in the offsets for treatments;

d) The special educational support;

e) The psychological support.

Article 4.

Special arrangements

Of the application of the scheme provided for in this Law shall not result in a decrease of

guarantees, subsidies or any other perks, for the beneficiaries provided for and

that they are applicable to them by virtue of another legal or contractual provision.

Article 5.

Information

The State and the other competent, public or private entities, shall ensure,

concerning the beneficiaries of the social protection scheme established in the present

law, the disclosure of the rights set out therein, and shall still presentiate them, under the terms

deemed appropriate, all relevant information on the mode of exercise

of these rights.

CHAPTER II

SOCIAL PROTECTION

Section I

Protection at work

Article 6.

Beneficiaries

1-Are beneficiaries of the protection at work, provided for in this Section, the

progenitors of the child or young carrier of oncological disease that cumulatively:

a) Exerate parental power over the child or young person;

b) Vivam communion of table and housing with the child or young person.

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2-The rights assigned to progenitors through this Law shall be extendable to the

adopter, tutor or person to whom the judicial or administrative trust of the

child or young porter of oncological disease, as well as to the spouse or person who

live in de facto union with any of those or with the progenitor.

Article 7.

Falters for assistance

1-The worker who finds himself in the situation provided for in Article 6 has a right to be missed

to work, up to 45 days a year, to provide unavoidable and indispensable assistance to the

child or young porter of oncological disease.

2-In the event of hospitalization, the right to be missed extends by the period in which that

last.

3-In the event that there are two persons covered by the protection at work, in the terms

defined in Article 6, the right provided for in the preceding paragraphs may be exercised by

any of them or by both of them in successive periods, as per joint decision.

Article 8.

License for assistance

1-The worker who finds himself in the situation provided for in Article 6 shall be entitled to leave

no retribution for a period up to six months for follow-up of the child or

young porter of oncological disease.

2-A licence is renewable, provided that the accumulated period of time does not exceed six

years.

3-If there are two holders of the right provided for in paragraph 1, the licence may be used by

any of them or for both of them in successive periods, as per joint decision.

4-It Is Incumbent on the Government to establish the conditions for the exercise of the right provided for in

previous number.

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Article 9.

Special working conditions

1- The worker who finds himself in the situation provided for in Article 6 is entitled to the reduction

of five hours of the normal weekly period of work for child care or

young porter of oncological disease.

2-It Is Incumbent on the Government to establish the conditions for the exercise of the right provided for in

previous number.

Article 10.

Part-time work or with time flexibility

1-The worker who finds himself in the situation provided for in Article 6 shall be entitled to

working part-time or with time flexibility.

2-It Is Incumbent on the Government to establish the conditions for the exercise of the rights provided for in

previous number.

Article 11.

Dispensation of supplementary work

The worker who finds himself in the situation provided for in Article 6 is not obliged to

provide supplementary work.

Article 12.

Dispensation of night work

1-The worker who finds himself in the situation provided for in Article 6 is waived from

provide work between the 20 hours of a day and the 7 hours of the following day.

2-The worker referred to in the preceding paragraph shall be assigned, where possible,

a compliant daytime working hour.

3-The worker is discharged from work whenever it is not possible to apply the

willing in the previous number

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Section II

Assistance and follow-up allowance

Article 13.

Purpose

An allowance is created to compensate for the impediment to the work on the grounds of

assistance and follow-up of the child or young porter of oncological disease.

Article 14.

Beneficiaries

1-Are beneficiaries of the allowance provided for in this Section the persons who se

find themselves covered by protection at work, in the terms set out in Article 6, and

that, cumulatively:

a) They did not declare, in the previous year, income in excess of 100 salaries

monthly national minimums, when married, or 50 monthly minimum wages

national, when unmarried;

(b) they are benefiting from the leave for assistance, provided for in Article 8, or of the right

working part-time, provided for in Article 10, provided that it is equal to or greater than

50% of the normal working hours.

2-In households where, in the terms of the preceding paragraph, more than one

person is a beneficiary, only one of them can earn the allowance.

3-If, in the same household, there is more than one child or young person

oncological disease bearer, can a second beneficiary, under the terms of paragraph 1,

also earn the allowance.

Article 15.

Amount

The allowance provided for in this section consists of a corresponding monthly benefit

a 70% of the reference remuneration of the beneficiaries, with the maximum limit of two

national monthly minimum wages.

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Article 16.

Application

1-The beneficiaries may, at all times, apply for the allowance provided for in the present

section.

2-The application is filed with the Solidarity and Security services

Social from the area of the 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-In the determination of the period of duration will be taken into account:

a) The severity of the clinical situation of the child or young porter of oncological disease;

b) The foreseeable need for internships, treatments, consultations, as well as the

distance from the respective displacements;

c) The economic and social situation of the household.

3-The allowance is renewable, at the request of the person concerned, as long as they stay their

allotment assumptions, up to the maximum cumulative time limit of six years.

Article 18.

Extinguishing

1-The right to the subsidy to become extinct 7 days after the occurrence of any event which

cause the loss of the beneficiary condition.

2-The beneficiaries who lose this condition must, within 7 days of the

occurrence of this fact, communicate it to the services of Solidarity and Social Security.

3-A failure to comply with the provisions of the preceding paragraph shall determine the return of the

amounts paid since the occurrence of the fact that occasioned the loss of the condition of

beneficiary, without prejudice to sanction that may fit by force of another provision

legal.

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Section III

Comstake in the displacements for treatments

Article 19.

Beneficiaries

1-It is a beneficiary of the comstake in the displacements to treatments planned in the

present Section the child or young porter of oncological disease.

2-It is also a beneficiary of the comparticipation referred to in the preceding paragraph

accompanying person, provided that the provisions of Article 21 have been observed.

Article 20.

Comprised expenses

1-Only expenses relating to displacements exceeding the 20 km are attended

between the residence of the patient and the place to where this is carried.

2-In case the displacement takes place in collective transport, it is attended in full

the value of the expense of transport in the economic class.

3-In case the displacement takes place in private transport, the value of the comparticipation

with the expense of the transport is fixed by the Government.

4-For the purposes of the provisions of the preceding paragraph are only comprised of the displacements

that the patient has actually carried out, not accounting for the kilometres that the

transporter may charge for return to the place of departure without the customer.

Article 21.

Subsidiary character

1-The expenses borne by the chaperones of children and young people with illness

oncological, in displacements for treatments, consultations and too much health care

related to this disease, are only comprised in case of insufficiency of means

humans or materials of the respective medical-social unit, or in the event of a deficiency of

specialized services required.

2-For the effects provided for in the preceding paragraph, by appointment of the attending physician, the

competent services issue a credential.

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3-If it is the case, the credential will indicate the reasons why the patient should displace

accompanied.

Article 22.

Refund

1-The beneficiaries should apply for the attendance provided for in this Section

together with the managing institution of the medical-social unit that covers them.

2-The application for comparticipation should be accompanied by the credential provided for in the n.

2 of the previous article, as well as the evidence of the expenditure incurred.

3-The right to the attendance shall lapse within 90 days from the date on which

the expenses were carried out.

Section IV

Special educational support

Article 23.

Special educational measures

1-Children and young carriers of oncological disease benefit from the following

special educational measures:

a) Special clearing equipment;

b) curricular adaptations;

c) special conditions of assessment;

d) increased pedagogical support.

2-Special educational measures are intended to benefit the frequency to classes,

contribute to learning and school success and favour the full integration of the

children and young people carriers of oncological disease.

3-A The implementation of the measures provided for in paragraph 1 is carried out on a case-by-case basis, attending to the

specificities of the disease and the limitations of the student.

4-A competence and technical criteria for the implementation of educational measures

special is defined by the Government in a diploma of its own.

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Article 24.

Special compensation equipment

Special compensation equipment is considered the devices of

individual or group compensation, specifically:

(a) Optical or acoustic auxiliaries;

b) Adapted computer equipment;

c) Wheelchairs.

Article 25.

Curricular adaptations

1-It is considered to be curricular adaptation to the dispensation of activity that proves impossible

of performing in function of the oncological disease.

2-A The curriculum adaptation provided for in this article is without prejudice to the compliance of the

general objectives of the frequented cycles and levels of education and is only applicable when

check that the feature to special compensation equipment is not sufficient.

Article 26.

Special conditions of assessment

Special conditions of assessment shall be considered as the following changes to the scheme

common educational:

a) Type of proof or instrument of assessment;

b) Form or means of expression of the student;

c) Duration;

d) Date and place of execution.

Section V

Psychological support

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Article 27.

Increased pedagogical support

Increased pedagogical support consists of the individualized supplementary lective support or

in small groups and has temporary character.

Article 28.

Beneficiaries

They are beneficiaries of psychological support:

a) Children and young people carriers of oncological disease;

b) The persons who fulfil the requirements laid down in Article 6.

Article 29.

Location

1-The psychological support provided for in the previous article is provided on the own

hospital establishment or place where the patient is admitted to or receive the

treatments.

2-In case the support provided for in the preceding paragraph shall not be carried out, the support

psychological is provided through the health centres and hospitals in the area of residence of the

family aggregate.

CHAPTER III

FINAL AND TRANSITIONAL PROVISIONS

Article 30.

Entry into force

This Law shall come into force on the January 1, 2008.

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Article 31.

Regulation

The Government shall regulate this Act within 90 days.

Palace of S. Bento from February 2007

The Deputies