Social Security has recently updated the list of pathologies that may result in the recognition of the care provision of children with serious illness.
For the first time it includes rare pediatric diseases: bullous epidermolysis (known as 'butterfly skin'), Behçet syndrome and Smith Magenis syndrome, and the possibility of accessing help by reduced working hours to care for a child, also at home and not only in the hospital.
Novelties of access to benefits
According to Social Security, Order TMS / 103/2019 modifies the annex of Royal Decree 1148/2011, of July 29, for the application and development, in the Social Security system, of the economic benefit for the care of minors affected by cancer or other serious illness.
In Babies and moreReduction for family reasons: everything you need to know before requesting itIn addition to updating the list of pathologies entitled to benefit, it incorporates "the possibility of providing coverage to patients with other serious pathologies that, by express indication of the physician, require permanent care under hospital admission or home hospitalization".
It also includes as an annex a model medical statement about the need for continuous care of the child named 'Medical statement for the care of children affected by cancer or other serious illness'.
Requirements to qualify for the benefit
Child care assistance with serious illness, in force since 2011, benefits biological parents, adoptive or welcoming parents who reduce their workday by at least 50% for the care of a child at your expense affected by cancer or other serious illness.
To access the benefit, both parents have to work, although only one benefit is recognized.
The requirements are the same as for the maternity benefit: being enrolled and enrolled in some regime of the Social Security system and having the minimum contribution period required covered.
For over 26 years, the minimum period is 180 days within the immediately preceding seven years.
How much does the aid amount to?
The economic benefit of the subsidy is calculated on 100% of the regulatory base established for the temporary disability benefit derived from professional contingencies. And from there the percentage of reduction of the working day is applied.
The benefit is extinguished when the need for direct, continuous and permanent care of the child ceases or when he turns 18.
You can access the application through the Social Security website.
In 2018, 3,136 new processes were initiated due to a child's serious illness and at the end of 2018, 5,464 remained in force.
The average duration of the processes that ended in 2018 was 412.02 days.
List of pediatric diseases entitled to help
Oncology
1.- Acute lymphoblastic leukemia.
2.- Acute non-lymphoblastic leukemia.
In Babies and more Your co-workers donate 3,300 extra hours so you can take care of your child with leukemia 3.- Non-Hodgkin lymphoma.
4.- Hodgkin's disease.
5.- Tumors of the Central Nervous System.
6.- Retinoblastomas.
7.- Kidney tumors.
8.- Liver tumors.
9.- Bone tumors.
10.- Soft tissue sarcomas.
11.- Germ cell tumors.
12.- Any other serious cancer disease that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
Hematology
13.- Severe medullary aplasia (constitutional or acquired).
14.- Serious constitutional neutropenias.
15.- Serious constitutional hemoglobinopathies.
Any other serious hematological disease that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
Inborn errors of metabolism
16.- Amino acid disorders (phenylketonuria, tyrosinemia, urine disease with the smell of maple syrup, homocystinuria and other serious disorders).
17.- Urea cycle disorders (OTC).
18.- Disorders of organic acids.
19.- Carbohydrate disorders: glycogenosis, galactosemia, hereditary fructose intolerance. And other serious disorders.
20.- Protein glycosylation alterations.
21.- Lysosomial diseases: mucopolysaccharidosis, oligosaccharidosis, sphingolipidosis and other serious diseases.
22.- Peroxisome diseases: Zellweger syndrome, chondrodysplasia punctata, X-linked adenoleukodystrophy, Refsum disease and other serious disorders.
23.- Mitochondrial diseases: due to fatty acid oxidation and carnitine transport defect, mitochondrial DNA alteration, nuclear DNA mutation.
Any other inborn error of serious metabolism that, by express optional indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
Allergy and immunology
24.- Serious food allergies subjected to induction of oral tolerance.
25.- Severe bronchial asthma.
26.- Primary immunodeficiencies due to antibody production defect.
27.- Primary immunodeficiencies due to T lymphocyte defect.
28.- Immunodeficiencies due to phagocyte defect.
29.- Other immunodeficiencies:
Wisccott-Aldrich syndrome.
DNA repair defects (ataxia-telangiectasia).
Di George syndrome.
HyperIgE syndrome.
IPEX syndrome
30.- Immune dysregulation and lymphoproliferation syndromes.
Any other serious allergic and immunological illness that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
Psychiatry
31.- Eating behavior disorders.
32.- Serious behavior disorder.
33.- Major depressive disorder.
34.- Psychotic disorder.
35.- Schizoaffective disorder.
Any other serious psychiatric illness that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
Neurology
36.- Congenital malformations of the Central Nervous System.
37.- Severe head trauma.
38.- Severe spinal cord injury.
39.- Epilepsy:
West syndrome
Dravet syndrome
Lennox-Gastaut syndrome.
Epilepsy secondary to malformation or brain injury.
Rassmussen syndrome.
Epileptic encephalopathies.
Epilepsy secondary to metabolic diseases.
Other well defined epilepsies.
40.- Autoimmune diseases:
Multiple sclerosis.
Acute disseminated encephalomyelitis.
Guillain barre.
Chronic demyelinating polyneuropathy.
Limbic encephalitis
41.- Neuromuscular diseases:
Infantile spinal muscular atrophy.
Duchenne's disease
42.- Infections and parasitosis of the Central Nervous System (meningitis, encephalitis, parasites and other infections).
43.- Stroke.
44.- Childhood cerebral palsy.
45.- Narcolepsy-cataplexy.
Any other serious neurological and / or neuromuscular disease that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
Cardiology
46.- Congenital heart disease with ventricular dysfunction.
47.- Congenital heart disease with pulmonary hypertension.
48.- Other serious congenital heart diseases.
49.- Cardiomyopathies with ventricular dysfunction or severe arrhythmias.
50.- Heart disease with cardiac dysfunction
51.- Heart transplant.
Any other serious cardiological disease that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
Respiratory system
52.- Cystic fibrosis.
53.- Interstitial pneumopathies.
54.- Bronchopulmonary dysplasia.
55.- Pulmonary hypertension.
56.- Bronchiectasis.
57.- Respiratory diseases of immunological origin:
Alveolar Proteinosis
Pulmonary hemosiderosis
Sarcoidosis
Collagenopathies
58.- Lung transplant.
59.- Any other serious respiratory disease that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
Digestive system
60.- Wide bowel resection.
61.- Severe intestinal dysmotility syndrome (intestinal pseudo-obstruction).
62.- Severe congenital diarrhea.
63.- Intestinal transplantation.
64.- Severe liver disease.
65.- Liver transplantation.
66.- Any other serious digestive system disease that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
Nephrology
67.- Terminal chronic kidney disease in substitution treatment.
68.- Renal transplantation.
69.- Chronic kidney disease in the first year of life.
70.- Nephrotic syndrome of the first year of life.
71.- Corticorresistant and corticodependent nephrotic syndrome.
72.- Tubulopathies of severe evolution.
73.- Bartter syndrome.
74.- Cystinosis.
75.- Renal tubular acidosis.
76.- Dent disease.
77.- Lowe syndrome.
78.- Hypomagnesemia with hypercalciuria and nephrocalcinosis.
79.- Complex nephrourological malformations.
80.- Polymalformative syndromes with renal involvement.
81.- Neurogenic bladder.
82.- Congenital defects of the neural tube.
83.- Any other serious nephrological disease that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
Rheumatology
84.- Juvenile idiopathic arthritis (JIA).
85.- Systemic lupus erythematosus.
86.- Juvenile dermatomyositis.
87.- Mixed connective tissue disease.
88.- Systemic scleroderma.
89.- Autoinflammatory diseases (Family Mediterranean Fever, Amyloidosis and other serious autoinflammatory diseases).
90.- Behçet syndrome.
91.- Any other serious rheumatic disease that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
Surgery
92.- Head and neck surgery: hydrocephalus / shunt valves, myelomeningocele, craniostenosis, cleft lip and palate, reconstruction of complex craniofacial deformities, etc.
93.- Chest surgery: thoracic deformities, congenital diaphragmatic hernia, pulmonary malformations, etc.
94.- Digestive system surgery: esophageal atresia, anti-reflux surgery, abdominal wall defects, intestinal malformations (atresia, volvulus, duplications), intestinal obstruction, necrotizing enterocolitis, inflammatory bowel disease surgery, intestinal failure, Hirschprung, anorectal malformations, bile duct atresia, portal hypertension, etc. .
95.- Nephro-urological surgery: renal and urinary tract malformations.
96.- Polytraumatized surgery.
97.- Surgery of severe burns.
98.- Siamese twins surgery.
99.- Orthopedic surgery: skeletal dysplasia surgery, scoliosis, developmental hip dysplasia, cerebral palsy surgery, neuromuscular diseases and spina bifida, skeletal infections and other complex orthopedic surgeries.
In Babies and more Spina bifida: what it is and how to prevent it100.- Other transplant surgery: heart valves, bone transplants, multiple transplants of different devices.
Any other surgical procedure for serious pathologies that, by express express indication, as in the previous ones, require permanent care in hospital admission or home hospitalization regime.
Palliative Care
101.- Any serious illness that gives rise to the need for palliative care in the final phase of the patient's life that, by express express indication, requires permanent care under hospital admission or home hospitalization.
Neonatology
102.- Large premature babies, born before 32 weeks of gestation or weighing less than 1,500 grams and premature babies who require prolonged admission due to complications secondary to prematurity.
In Babies and more Born prematurely, an arrival in the world ahead of time for which no one is preparedAny other serious neonatological disease that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
Infectious diseases
103.- HIV infection.
104.- Tuberculosis.
105.- Complicated pneumonia.
106.- Osteomyelitis and septic arthritis.
107.- Endocarditis.
108.- Complicated pyelonephritis.
109.- Sepsis.
Any other serious infectious disease that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
XVI. Endocrinology
110.- Diabetes Mellitus type I.
Any other serious endocrinological disease that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
Genetic-based disorders
111.- Smith-Magenis syndrome.
112.- Bullous epidermolysis.
In Babies and more, they save the life of a "butterfly child" by regenerating 80 percent of their skin113.- Any other serious genetic-based disorder that, by express express indication, as in the previous ones, requires permanent care under hospital admission or home hospitalization.
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