Workability and disability at Workability and disability at persons with congenital heart persons with congenital heart

diseasesdiseasesAsAsssist.ist. Prof Prof. Dr. Corina Oancea. Dr. Corina Oancea MD PhD MD PhD “Carol Davila” University of Medicine and “Carol Davila” University of Medicine and

Pharmacy Bucharest Pharmacy Bucharest EASOM Timisoara EASOM Timisoara

25 August 201625 August 2016

BACKGROUNDHeart defects present at birthHeart defects present at birthThe prevalence: 7.1 / 1000 births (EUROCAT data)The prevalence: 7.1 / 1000 births (EUROCAT data)About 25% are "critical" congenital heart diseases (CHD) requiring About 25% are "critical" congenital heart diseases (CHD) requiring intervention (surgery or catheterization) in the first year of lifeintervention (surgery or catheterization) in the first year of lifeThese types of interventions have greatly improved the survival rate, These types of interventions have greatly improved the survival rate, 85% reach adult 85% reach adult age age There are There are performed in the first weeks of life to optimize performed in the first weeks of life to optimize hemodynamics and prevent irreversible damage that hemodynamics and prevent irreversible damage that occur in case occur in case of late diagnosis of late diagnosis There are about 800,000 There are about 800,000 adults with adults with CHD in CHD in the USA, 60,000 adults the USA, 60,000 adults in in Romania Romania Given Given the low mortality rate for modern surgical procedures (under the low mortality rate for modern surgical procedures (under 5%) is expected in the next 5%) is expected in the next decade that about decade that about 1 in 150 young adults 1 in 150 young adults to have to have a a type type of of CHD CHD

Types of Congenital Heart DefectsTypes of Congenital Heart Defects

Atrial septal Atrial septal defect defect Ventricular septal Ventricular septal defect defect Patent Ductus Patent Ductus Arteriosus Arteriosus Coarctation of the Coarctation of the aorta aorta Congenital aortic stenosisCongenital aortic stenosisPulmonary Pulmonary valve valve stenosis stenosis Eisenmenger syndrom Eisenmenger syndrom Less often: Repaired Less often: Repaired TTetralogy etralogy of of Fallot, Fallot, Ebstein's anomaly, Congenitally Ebstein's anomaly, Congenitally corrected corrected transposition of the great transposition of the great arteriesarteries

Psychosocial AspectsPsychosocial AspectsIntellectual development and Intellectual development and education education

Employment Employment

Life Life and health and health insurance insurance

Physical Physical activity and activity and sport sport

Quality Quality of of life life

Patient organizations Patient organizations

Employment Employment (1)(1) Ability to obtain and maintain a job depends Ability to obtain and maintain a job depends on: on: –– Physical Physical and intellectual and intellectual abilities abilities –– Motivation Motivation –– IInteraction nteraction with with others others –– PPotential otential social social discrimination discrimination

Lack Lack of employment is more common in patients with of employment is more common in patients with complex complex defects defects About About 10% have 10% have total loss of work ability total loss of work ability Lack Lack of occupation has important side effects: of occupation has important side effects: low self-low self-esteem, decreased esteem, decreased social contactssocial contacts

Employment Employment (2)(2) IInformation nformation and and counselling counselling must take into must take into account individual account individual intellectual and physical intellectual and physical abilities and abilities and to consider specific features of this to consider specific features of this pathology, pathology, eg: eg: –– Severe Severe arrhythmias can disqualify people to perform arrhythmias can disqualify people to perform

certain professions: certain professions: driving driving –– There There are some particular medical contraindications are some particular medical contraindications

for employment in the public sector, depending on for employment in the public sector, depending on country-specific legislation: the armed forces, policecountry-specific legislation: the armed forces, police

Employment Employment (3)(3) Providing adequate Providing adequate school orientation / school orientation / training or training or retraining, qualification courses for learning a retraining, qualification courses for learning a profession profession or further trainingor further training, can increase the options and , can increase the options and opportunities for employment opportunities for employment A A disabled person can contribute significantly and disabled person can contribute significantly and on on long-term to the productivity long-term to the productivity growth and growth and the profit of the the profit of the companies companies Many Many NGOs NGOs have training have training projects projects for for persons with persons with disabilities and disabilities and information campaigns among employers information campaigns among employers about the skills of these people and their willingness to about the skills of these people and their willingness to work, work, job fairs for job fairs for people with disabilitiespeople with disabilities

Social insurance rights in RomaniaSocial insurance rights in Romania

Work disability (Invalidity) pension Work disability (Invalidity) pension for for insured persons insured persons who have total or at least who have total or at least half loss of their work capacity half loss of their work capacity

Social Social services and benefits services and benefits for disabled for disabled persons persons

Legislation Legislation

Law Law 263/2010 on the unitary system of public 263/2010 on the unitary system of public pensions pensions

Law Law 448/2006 related to people with disabilities, 448/2006 related to people with disabilities, with adjustments and supplementary regulations with adjustments and supplementary regulations subsequently introducedsubsequently introduced

Work disability Work disability

It is quantified in relation to the degree of functional It is quantified in relation to the degree of functional impairment impairment caused caused by the diseaseby the disease The degrees of work disability are specified inThe degrees of work disability are specified in Law Law 263/2010 - Article 69263/2010 - Article 69, , as follows: as follows: –– Work disability 1Work disability 1stst degree degree – total loss of work capacity – total loss of work capacity

associated to the loss of capacity to perform the everyday associated to the loss of capacity to perform the everyday tasks, the person requires the assistance of a third person tasks, the person requires the assistance of a third person

–– Work disability 2Work disability 2ndnd degree degree – total loss of work capacity, – total loss of work capacity, while maintaining the ability to perform acts of everyday life while maintaining the ability to perform acts of everyday life

–– Work disability 3Work disability 3rdrd degree degree – a minimum loss of half the – a minimum loss of half the work capacity, the person is still capable of exerting some work capacity, the person is still capable of exerting some types of work in part time types of work in part time

SOCIAL INSURANCE MEDICINESOCIAL INSURANCE MEDICINE

Based on a holistic approach to the personBased on a holistic approach to the person

Assessment (the reduction) of functional capacityAssessment (the reduction) of functional capacity

Establishment of the degree of work disabilityEstablishment of the degree of work disability

Decision on the eligibility to long-term incapacity benefits Decision on the eligibility to long-term incapacity benefits

Analysis of the possibilities of rehabilitation and social Analysis of the possibilities of rehabilitation and social integration of persons suffering from a chronic health integration of persons suffering from a chronic health problem or problem or disability disability

Medical assessment Medical assessment Standardized approach Specific investigations are needed to: Specific investigations are needed to: –– Define the clinical manifestations of the disease Define the clinical manifestations of the disease –– DDetermine the disease severity etermine the disease severity –– AAssess the response to treatment ssess the response to treatment –– MMonitor the progression of the diseaseonitor the progression of the disease–– EEstimate the functional impact of the disease stimate the functional impact of the disease

Investigations:- Electrocardiogram- Cardio-pulmonary radiography- Cardiac ultrasound- Cardiac catheterization- Coronary angiography

– Magnetic resonance imaging

FUNCTIONAL ASSESSMENTFUNCTIONAL ASSESSMENT

Estimates the functional Estimates the functional impact of impact of the disease the disease It takes into account:It takes into account:- (Residual) left-right shunt size - (Residual) left-right shunt size - The presence of functional disorders (exercise - The presence of functional disorders (exercise tolerance, dyspnea, arrhythmias or conduction disorders, tolerance, dyspnea, arrhythmias or conduction disorders, angina, hypertension, infections, etc.) angina, hypertension, infections, etc.) –– PPathology-specific scales, internationally validated athology-specific scales, internationally validated

(NYHA Functional Classification of Heart Failure, (NYHA Functional Classification of Heart Failure, Canadian Cardiovascular Society grading of angina Canadian Cardiovascular Society grading of angina pectoris) pectoris)

–– Data relative to maintaining / loss of work capacity Data relative to maintaining / loss of work capacity and self-care and self-care

SOCIO-PROFESSIONAL EVALUATIONSOCIO-PROFESSIONAL EVALUATION

It is not quantified, has a guiding role, but occurs It is not quantified, has a guiding role, but occurs regularly in the overall assessment of the cases regularly in the overall assessment of the cases The social insurance physician is designed to settle The social insurance physician is designed to settle the cases individually the cases individually We take into account several aspects: We take into account several aspects: –– social situation social situation –– financial situation of the family financial situation of the family –– relationships (family / community) relationships (family / community) –– conditions and workplace relations conditions and workplace relations

Criteria Criteria for granting a for granting a work disability work disability degree degree

Elaborated by the National Institute Elaborated by the National Institute for for Medical Medical Assessment and Work Capacity Assessment and Work Capacity Rehabilitation Rehabilitation

Approved by specialized commissions (cardiology) of the Approved by specialized commissions (cardiology) of the Ministry of HealthMinistry of Health

They are constantly updated with the terminology They are constantly updated with the terminology and and guidelinesguidelines

AApproved pproved by Government by Government decisiondecision

There are national There are national criteria which criteria which ensures a transparent ensures a transparent and uniform applicationand uniform application

SPECIAL PROTECTION OF PERSONS SPECIAL PROTECTION OF PERSONS WITH WITH DISABILITIES DISABILITIES

Are recognized as "Are recognized as "disabled“, all disabled“, all persons persons with physical, mental or sensory with physical, mental or sensory impairment, who are unable to ensure impairment, who are unable to ensure themselves a normal daily activity and thus themselves a normal daily activity and thus require protective measures in order to require protective measures in order to obtain rehabilitation and social integration obtain rehabilitation and social integration

DISABILITYDISABILITY

Evaluation of impairments in people with disabilities is Evaluation of impairments in people with disabilities is carried out according to a specific scale carried out according to a specific scale Current medical and psychosocial criteria are approved Current medical and psychosocial criteria are approved by joint order of the Minister of Labour and Ministry of by joint order of the Minister of Labour and Ministry of Health on the proposal of the National Authority for Health on the proposal of the National Authority for Disabled People (ANPD) Disabled People (ANPD) The recognition as disabled person allows the granting The recognition as disabled person allows the granting of social benefits (fixed amount allowances, tax benefits, of social benefits (fixed amount allowances, tax benefits, transport facilities, free medicines) transport facilities, free medicines) Non-contributory protection system, the Non-contributory protection system, the eligibility for eligibility for those benefits is those benefits is inindependent of the length of servicedependent of the length of service

Psychosocial Psychosocial rehabilitationrehabilitation

Individual rehabilitation programs (social Individual rehabilitation programs (social and and professional skills/autonomy) professional skills/autonomy) Interventions Interventions on the environment (on the environment (family/socialfamily/social), ), so so to reduce disability to reduce disability MMultidisciplinary teams ultidisciplinary teams PPurpose: urpose: –– Achieve a Achieve a good quality of life even in the presence of good quality of life even in the presence of

residual residual disorders disorders –– Satisfying social integrationSatisfying social integration

Rehabiltation of work capacity Rehabiltation of work capacity

Initiate the rehabilitation plan to obtain socio-professional Initiate the rehabilitation plan to obtain socio-professional reintegration - attribution reintegration - attribution of social of social insurance insurance doctor, doctor, according to the according to the law 263/2010, art. law 263/2010, art. 81(1) 81(1) Is essential Is essential to to keep informed the person keep informed the person concerned and concerned and to cooperate to cooperate with with the the responsible authorities: The National House of Public responsible authorities: The National House of Public Pensions (CNPP), The National Agency for Employment (ANOFM) Pensions (CNPP), The National Agency for Employment (ANOFM) To inform about The National Plan for Vocational Training in 2015: To inform about The National Plan for Vocational Training in 2015: over 41,000 over 41,000 people people receiving receiving 2,395 free professional training 2,395 free professional training programsprograms, , financed from the Unemployment Insurance Budget financed from the Unemployment Insurance Budget andand European structural European structural funds funds In this plan are also included In this plan are also included people who have people who have regained regained partially/entirely their work ability after a period of work disability partially/entirely their work ability after a period of work disability Keep all parties informed about the Cooperation Keep all parties informed about the Cooperation Protocol Protocol between between CNPP and ANOFM to CNPP and ANOFM to increase the employment opportunities increase the employment opportunities for for work disability work disability pensioners who have regained pensioners who have regained their work ability their work ability

Socio-professional reintegrationSocio-professional reintegration

Is the goal of the rehabilitation plan Is the goal of the rehabilitation plan Difficult to implement because of the discrepancy Difficult to implement because of the discrepancy between between theory and practicetheory and practiceThere are national There are national programs programs but with small capacity of but with small capacity of coverage, few coverage, few resultsresultsAn option: actions An option: actions carried out by NGOs (work integration carried out by NGOs (work integration programs for persons programs for persons with disabilities)with disabilities)In conclusion there is a In conclusion there is a need for a standardized and need for a standardized and scientific scientific approach approach

PerspectivesPerspectivesResearch in the field of social security More emphasis on the bio-psycho-social model (WHO ICF - International International Classification of Classification of Functioning, Disability and Functioning, Disability and HealthHealth 2001) Better individual assessment of disability, based on ICF, with more focus on capacities Better approach in providing services (rehabilitation, employment, social inclusion) vs. only financial assistance

Ongoing programs of the Ministry of Labour