After nearly two years of claims, mobilizations and negotiations between the families of minors with serious illnesses and the Ministry of Inclusion, Social Security and Migration, the reform of the CUME benefit is a reality. The Council of Ministers has approved this Tuesday, as DEMÓCRATA announced in advance, the royal decree that will replace the regulation in force since 2011 and will develop the legal modifications approved last October, in addition to introducing new conditions to access the aid, renew it and certify the need for care.
The draft of the text, to which this medium has had access and which will be published in the BOE tomorrow, expressly incorporates autism spectrum disorder and Poirier-Bienvenu neurodevelopment syndrome into the list of serious illnesses, expands the protected care scenarios, allows the benefit to be combined with schooling and modifies the renewal periods. It also regulates in greater detail the simultaneous enjoyment by both parents and situations of separation or divorce.
However, one of the most sensitive new features for families affects the supervision of the benefits. The draft will require a binding report from the Medical Inspection every two years to confirm that care is still necessary, while ASFACUME denounces that inspectors sometimes contradict the criterion of the specialists who treat their children.
what are we talking about:
The CUME benefit, created in 2011, compensates for the loss of income of workers who need to reduce their working day by at least 50% to care for a child affected by cancer or another serious illness.
Although it was initially linked to minority age, successive reforms allowed it to be extended up to 23 years of age and, in certain disability cases, up to 26.
About home and outpatient treatments
The rule expands protection to certain care that is carried out outside the hospital. Among them are home hospitalization, outpatient or continuous treatments and home care derived from specialized and complex therapies, in addition to other care of special intensity prescribed by a doctor. To access the aid, it will be necessary to prove that the absence of hospitalization responds to clinical, therapeutic or organizational reasons and not to a lesser need for care.
New serious illnesses
Among the new features is the updating of the catalog of pathologies that allow access to the benefit. The new annex expressly incorporates autism spectrum disorder (ASD) and Poirier-Bienvenu neurodevelopmental syndrome. In addition, the regulation will also allow new diseases to be incorporated by ministerial order, without the need to approve another royal decree.
Both parents may share the benefit
Another of ASFACUME's main demands, and one that has found a place in the new regulation, is the possibility for both parents to take part in the care of their children without one of them necessarily having to take on all of the reduction in working hours. The draft develops the simultaneous or alternative recognition of the benefit and establishes that, when both receive it at the same time for the care of the same person, each will receive the equivalent of 50% of their respective regulatory base. They may also alternate through agreements for periods of no less than fifteen days.
The association had especially highlighted this modification because of its consequences for inequality in the distribution of care. According to its estimates, more than 90% of the people covered by CUME are women. "What we wanted was to begin to involve the father parent in the care of our children," its representatives explained to this medium after the approval of the Royal Decree-law that began to extend protection last October. "In this way, sharing the work 50-50, there is not that punishment always on the woman," they added.
26 years
The new regulation also develops the exceptional extension of the right when the sick person exceeds 26 years of age and has recognized a disability equal to or greater than 65% or a dependency of degree III, provided that they continue to need direct, continuous and permanent care. The draft specifies the necessary cohabitation conditions to retain the benefit and provides that temporary stays in residential resources or support housing intended for family respite do not necessarily interrupt that requirement, as long as effective care persists.
What happens with renewals?
The regulation modifies the periods for which the benefit is recognized and renewed. The initial grant will be for four months, the first extension may reach six, and the following ones will extend up to eight months, as long as the medical declaration confirms that care continues to be necessary. Requests for renewal may be submitted during the three months prior to the expiration of the aid. In addition, when the doctor determines that the need for care will last for a shorter period, the subsidy will be recognized only for the accredited period.
The medical inspectors
The draft strengthens the intervention of the Medical Inspection of the Public Health Service through a mandatory review once the first 24 months have elapsed since the recognition of the benefit and, subsequently, every two years. To renew the aid, it will be necessary to include a binding report confirming the persistence of the serious illness and the need for direct, continuous, and permanent care. The inspectors will have thirty days to issue it and, if they do not do so within that period, the benefit will continue to be paid provisionally, within the limits established in the regulation.
The measure gains special relevance because of the complaints from ASFACUME, which questions that medical inspectors can amend or contradict the assessments of the specialists who directly treat minors. The new text preserves that possibility of disagreement, since the Inspection report will be binding and it is not established that the criterion of the doctor responsible for treatment must prevail. However, an unfavorable assessment will not automatically lead to the withdrawal of the aid. The managing entity or the mutual insurance company must initiate proceedings, grant the family ten days to submit allegations, and forward them again to the Inspection, which may confirm or modify its report. If it modifies its essential grounds and maintains the unfavorable conclusion, a new hearing must be opened before resolving.
The Ministry also plans to draw up, in collaboration with Health, an indicative technical guide to unify the criteria for assessment and accreditation of care. The document must be ready within the six months following the entry into force of this royal decree, although the draft does not specify how discrepancies between specialists and inspectors will be resolved beyond the review and claims procedure.
Workers with reduced part-time hours will be able to access the subsidy
The draft approved by the Council of Ministers eliminates the exclusion that prevented those who worked part-time with an effective working day equal to or less than 25% of that corresponding to a comparable full-time worker from applying for the benefit. People with contracts for few hours will also be able to access the CUME if they reduce their working day by at least 50% and meet the other requirements. The change aims to prevent the initial duration of the contract from making it impossible to receive aid linked to the need to care for a seriously ill person.
School attendance
On the other hand, the minor’s attendance at school will not in itself prevent retaining the subsidy when clinical circumstances persist that require the effective availability of the caregiver. The regulation expressly mentions treatments, medical check-ups, crisis episodes, monitoring needs, administration of medication and frequent trips to health centers as situations that may justify the continuation of the aid. Compatibility must be proven by the corresponding medical declaration and will also extend to certain training practices.
More clarity for separated or divorced families
The new regulation introduces specific provisions for cases of annulment, separation, divorce, termination of domestic partnerships and gender violence, with the aim of clarifying who may receive the benefit and how cohabitation must be proven. In cases of shared residence, parents may alternate in collecting the payment in accordance with the proven cohabitation regime. When the sick person lives with only one of them, that parent may access the aid even if the other does not work, provided that they meet the remaining requirements.
The role of the specialists
The project allows the declaration necessary to recognize or renew the benefit to be completed either by a primary care physician or by a specialist care doctor from the public health service responsible for the patient. The new model incorporated into the regulation will require detailing the treatments, the care needs and the circumstances that justify equating home or outpatient care with hospital admission. However, when the diagnosis or treatment has been carried out in private healthcare, the declaration of the public health service will continue to be necessary.
The benefit of the self-employed
On the other hand, the reform of the regulation adapts the updating of the regulatory bases to the particularities of the contribution system of self-employed workers. The provisional bases used during the receipt of the subsidy will become definitive and will not be subject to the annual regularization, although the self-employed may request their update, with effect from the first day of the following month. The project also contemplates the revision of the bases of employed workers when modifications arising from legally foreseen causes occur.
When does it come into force?
The transitional provision of the text that the Executive has given the green light to also establishes that the procedures and the benefits already recognized will be adapted to the new regulation from its entry into force, without the need to repeat the validly carried out actions and with preferential application of the most favorable provisions for the interested persons. As for the new medical control, for ongoing benefits the two-year period will be counted from the last recognized extension. The royal decree will enter into force two months after its publication in the BOE.