6. Disability policy challenges in Italy: Conclusions and recommendations

Disability policy is a complex and sensitive matter, not least because it addresses a population that is diverse (in terms of the nature and the degree of disability) and an issue that is variable for the people concerned (as disability can improve or worsen over time) and for society (as new types of disability arise and are better understood such as, e.g. highly prevalent mental health conditions). Consequently, disability reform is often controversial and deeper structural reform is politically difficult, not least because it requires a cultural change among key stakeholders and institutions, people with disability themselves, and society at large. Disability reform therefore is an ongoing and never-ending process.

Since Italy’s ratification in 2009 of the UN Convention on the Rights of Persons with Disabilities (CRPD), an international treaty aiming for a truly inclusive society, Italian Governments of the time were confronted with a need for a structural change in disability policy, to align policies with the ideology of the CRPD. The current Government of Italy has engaged in a reform process which started with the enactment of a framework legislation – the so-called Enabling Act that delegates the responsibility for reform to the national government – and aims to address at least three long-standing policy issues: first, discrepancies with the CRPD calling for a new way to define and assess disability and thus eligibility for support; second, the fragmentation of disability assessments and disability supports; and third, resulting inequalities across Italy’s regions in the provision of disability services and the take-up of disability benefits.

This report is the result of a project, funded by the European Union, which aims to support the Government of Italy in its efforts to update disability policy and increase the efficiency of disability benefits and services. The project has supported the government in three ways: by i) piloting a new disability assessment in four regions which represent the social and economic diversity of Italy, discussed in Chapter 5; ii) analysing disability status and needs assessments in use in Italy, discussed in Chapters 2 and 4; and iii) analysing the system of social protection for people with disability in Italy, i.e. disability benefits and disability services available, discussed in Chapters 3 and 4. This final chapter summarises the conclusions from these analyses and provides actionable policy recommendations for Italy to consider.

Disability assessment is critical in the Italian system of social protection, as in most OECD countries, as it regulates entry into the system and eligibility for and access to all available disability supports. People with disability in Italy are confronted with a fragmented legal landscape. Several definitions and corresponding assessments of disability (status) coexist, reflecting the historical evolution of the legal framework. A piecemeal approach to legislation on disability created a system that is complex to navigate, with unclear or lacking links between the different types of assessment and a disability status assessment practice that looks at the individual from a rather narrow medical perspective.

Italy operates five different disability status assessments in parallel (civil invalidity, civil blindness, civil deafness, handicap, and disability for employment support), which look at different dimensions of disability, but all share a medical approach. General practitioners have a considerable responsibility in the process, as their documentation of the health situation forms the basis for the assessment decision. This decision is proposed by, and after a visit to, a medico-legal commission (with varying composition for the various status assessments, often referred to as baseline assessments), but in most cases the commission follows the opinion of the general practitioner. The assessment uses outdated correspondence tables to perform disability determination, thereby creating problems especially for mental health conditions which are the predominant health conditions today, especially for young adults, for whom a purely medical approach fails to correctly assess disability and, subsequently, to match needs with available resources.

In addition, Italy operates a contributory disability insurance system which operates its own assessment to determine a person’s remaining and permanent work capacity. While the co-existence of a contributory and a non-contributory system is common in OECD countries, the disconnect between the two systems and the heterogeneity of assessment practices are particularly salient in Italy.

Baseline or disability status assessments give people access to certain cash benefits that depend on the severity of their disability, or civil invalidity, measured as a percentage (100%=maximum disability). It is then mostly left to the person to follow up with regional and local authorities for other in-kind benefits (mostly health and social services) and corresponding needs assessments at the regional or local level.

Over the past decade, legislative efforts have been made to overcome fragmentation in both disability status and needs assessments, by introducing the concept of single points of entry at the local level to provide information and conduct a pre-assessment of applicants. These single points of entry should, in theory, guide users through the system and perform a triage into multidisciplinary and multidimensional assessments, playing an extensive role in taking charge of the client. In practice, however, the implementation of single points of entry varies considerably across and within regions, and – where such points of entry exist – there are considerable limitations in the degree of integration they achieve between social and health matters, as well as in the functions they perform.

Mirroring the situation with disability status assessments, the Italian situation is also characterised by a multitude of needs assessments at the regional and mostly local level. Needs assessments are performed in several contexts and tend to be driven by the service offered (i.e. provider driven) and shaped by the divide between the health and the social domain. The multitude of assessments remains a weakness in the passage to access regional and municipal programmes and services. A single multidisciplinary evaluation accepted by the health and social domain would simplify service access for vulnerable people and improve eligibility for different services available, according to the person’s individual needs, and thereby reduce the large variation and inequality in service access across the regions of Italy.

Not only are there several parallel needs assessments in place within and across regions, but there is also a multitude of tools used in those assessments, ranging from a very discretionary to a more structured and systematic approach. Several regions use a variant of the ‘multidimensional assessment card for people with disability’, an instrument developed in Veneto to standardise the provision of essential levels of social and health supports. None of the tools, however, have been tested in a scientifically sound way for their validity and their ability to identify the needs associated with a person’s functioning problems.

Finally, there is a large apparent disconnect between disability status assessments and subregional needs assessments, with the information of the former being of limited utility to the later due to the purely medical perspective, the format of the output and limited data sharing. This results in duplication of efforts at all levels of governance, with needs assessments for example yet again often requiring initial input by the general practitioner rather than building on the information provided for the disability status assessment.

The Enabling Law, enacted in late 2021, addresses several of the weaknesses of the disability assessment system in Italy, and suggests moving away from the narrow medical view on disability and achieving some system simplification and harmonisation across the country, also as a basis for a corresponding change and harmonisation in the social protection system for people with disability. The Law remains quite general on forthcoming social protection reform while being quite precise on the forthcoming disability assessment reform, including a call for a single national entity to run disability status assessments.

Partly echoing the reasoning behind the Enabling Law, and partly going beyond it, this report finds several reasons why, and areas where, the system of disability assessment in Italy is in urgent need of reform. Italy would be well advised to take reform steps in the following directions.

Include functioning and performance in disability status assessment. Disability assessment in Italy still uses a largely medical approach, not in line with the latest international view on, and definition of, disability. The focus on impairment in determining civil invalidity percentages does not consider the actual environment in which people live and their ability to function, thereby failing to assess the true extent of disability and not supporting equity and inclusion. In addition, the use of 30-year-old tables to translate impairment information into a civil invalidity percentage implies that many disabilities are covered poorly, especially mental health conditions which are frequent and often quite disabling. Including the WHO Disability Assessment Schedule (WHODAS) into the current assessment process would result in a more accurate assessment of a person’s disability.

Use WHODAS scores to flag the need for a more in-depth assessment. Evidence from the pilot in the four regions of Italy shows that a purely medical assessment identifies a rather different group as having a disability than the ICF-based WHODAS instrument. Policy makers will have to decide on the weight given to the information from WHODAS relative to the information from the medical files. The evaluation of the WHODAS pilot concluded that WHODAS scores are best used in Italy to flag the discrepancy between medical and functional assessment, thus requiring a more in-depth assessment of the person’s situation. The OECD would recommend to flag about one-third of all cases. While the government is committed to reform, to fulfil one of the central criteria of the CRPD which Italy had ratified more than 12 years ago, implementing change is likely to face resistance. It will therefore be important to communicate this change very clearly, to win the key stakeholders and the public over the reform.

Bring more social workers and other professions into the assessment process. Related to the medical orientation of disability assessment in Italy, the involvement of professionals other than medical doctors is limited. General practitioners initiate the process, collect the medical evidence that the applicant must provide for the case, and submit the medical file to the assessing authority. The medico-legal commissions, which are dominated by medical doctors with different specialisations, usually decide based on the medical file submitted by the general practitioner. This setup contributes to the overarching use of medical criteria and the limited consideration of the environment and peoples’ actual life. There is a strong case for giving social workers a greater role in the initiation and preparation of the documentation for disability assessments. The WHODAS pilot has demonstrated that social workers are well placed to implement the WHODAS questionnaire and to assess people’s life situation and disability.

Address the fragmentation and duplication of disability status assessments. Italy is currently running five different disability status assessments in parallel, with different criteria, procedures, and assessment commissions but a very similar purpose: to determine eligibility for a range of economic benefits. Such system fragmentation, and duplication, is neither efficient nor justified. Moving forward, this fragmentation should be eliminated by replacing the five disability status assessments with one assessment that has its focus on the capacity of a person to perform life activities and participate in social life (which is affected by both the health condition/impairment and the environment in which people live). This requires a unification of the various coexisting definitions of disability. The Enabling Act is slightly vague about this issue, but reform should not shy away from radical change. Keeping five different definitions and assessments and moving to a functioning approach within each of them, in different ways and to a different extent, would mean perpetuating difference, lack of transparency and inefficiency.

Address the fragmentation and duplication of needs assessments. Mirroring the inefficient multiplicity of disability status assessments, Italy’s regions and municipalities are also operating an array of needs assessments to determine eligibility for special services and in-kind benefits. These assessments often differ between and within regions – with the within-region variation reflecting two problems: first, the total disconnection between the health domain (which is under regional authority) and the social domain (which is under municipal authority); and second, the service-driven approach of needs assessments in Italy, where a different assessment is often used to determine eligibility for every service that is available. Maintaining a two-tier system, with a needs assessment following a disability-status assessment, is a practical way forward and an approach applied in many OECD countries. However, ideally both disability status assessment and needs assessment would be unified. A single needs assessment should be used across and within regions and municipalities to identify people’s needs and determine entitlement to different health and social services; this assessment should focus on people’s needs only, avoiding any bias related to the availability and capacity of specific services.

Improve the connection between disability status assessment and needs assessment. In the current assessment structure, not only are disability status and needs assessments fragmented but there is also no connection between the two. In a more effective and efficient system, disability status assessment would provide meaningful input for the subsequent needs assessment, and the information collected in the baseline assessment would be shared with the authorities responsible for needs assessment. Such an approach requires data to be collected and shared systematically, and ideally electronically. In this way, persons whose situation is assessed will not have to provide the same information repeatedly. Overcoming the fragmentation of disability status and needs assessments will facilitate the flow of information between the responsible assessment authorities. Data should not only be shared but some data should also be made publicly available, to foster transparency and promote an objective public debate. For instance, periodic reports on the number of people applying for and receiving a disability status, by age, gender, and region, could provide up-to-date evidence on the implementation of the legislation across Italy.

Reconsider the planned change in the governance structure for disability assessment. With the constitutional reform in Italy about 20 years ago, more responsibility for disability status assessment was devolved to the regions, even though the ultimate decision remained with INPS and some regions, or provinces, have chosen to delegate their new responsibility back to INPS. The Enabling Law foresees a change in the governance structure by appointing a single entity to run disability status assessments in the whole country in a coherent way. It is questionable if this is the best answer to the large difference across regions in the share of people of working age who apply for a disability status assessment – a phenomenon related to the large regional variance in the state of the economy and the labour market. An alternative to recentralising disability assessments would be strengthening the capacity of regions, especially as regions will continue to have core responsibilities in fields such as health and social services. Keeping disability status assessment in the hands of the regions at least to some degree, would facilitate structural reform and prevent a further disconnection between disability status and needs assessment.

Strengthen objectivity and reduce discretion in disability assessments. Both disability status and needs assessment decisions in Italy carry considerable discretionary elements, in turn potentially creating considerable inequity across similar life situations. This is explained by the lack of a standardised approach to assessments, and the lack of scientific testing of the features of the assessment tools in place. In the case of disability status assessment, including WHODAS would be a way to reduce discretion and achieve fairness and equity in the decision. Adapted versions of WHODAS could also be used for the disability status assessment for minors and for the elderly. For needs assessment, unifying assessments across regions, provinces, and municipalities, and for the health as well as the social sector, would be the only way to reduce discretion. This could be done by comparing and evaluating tools currently in place in the regions and choosing the best-performing of all available tools, or by developing and pilot-testing a new tool agreed by all regions and municipalities.

Help people with disability navigate the complex system. In the current system, the degree to which people with disability receive all the national, regional, and local benefits and services they could potentially be entitled to, depends to a considerable extent on their ability and staying power to navigate the system. This situation was also the starting point for the implementation of the single points of entry (PUA) in many regions and municipalities. PUAs are a sensible idea that is poorly implemented in practice, especially because the disability system remains complex and opaque to people who are not experts in administrative matters. A simplification and unification of disability status and needs assessments would facilitate the tasks and role of the PUAs considerably. Until then, the status of the PUAs should be enhanced so that they can be what they are meant to be: the first and only point of entry to the entire disability system, including all assessments (and thus all benefits and services) at both the national and the subnational level. It will also be important to achieve a higher degree of unification in the setup of PUAs and improve their human capacities across the territory.

Think about systematic reassessment of disability rights and entitlements. The Enabling Law makes no reference to two important issues. First, it does not address the issue of reassessment (on which also data is entirely absent) of a person’s disability status and needs. Reassessment is an important aspect of an effective and fair disability policy because disability can improve or deteriorate – in line with changes in the health condition and/or the social and supporting environment. In many cases, therefore, regular reassessment is justified and can strengthen the credibility and affordability of a generous social protection system. A second and partly related question that is also marginally addressed in the Enabling Law is the treatment of existing entitlements. A country can choose to either grandfather all existing entitlements or reassess everyone or certain groups in line with the new rules, tools, and procedures; either of the two approaches can be seen as “fairer” than the other, in different ways. Reassessing existing entitlements will be particularly appropriate if and as the social protection system also changes.

Evaluating the social protection system for people with disability in Italy and understanding the interaction between national policies (mostly various types of social benefits) and regional and local policies (mostly in-kind benefits and services) is difficult, for two reasons: first, because of the complexity of the system – which is a challenge for people with disability – and second, because of the lack of evidence in all areas to measure the effectiveness and efficiency of disability policies in place. It is therefore difficult to assess the actual impact and performance of the system. Policy conclusions and recommendations thus rely on limited, very partial, and often anecdotal evidence.

It appears that disability benefits and disability services available in Italy are quite comprehensive, with a suite of contributory and non-contributory payments to cover income loss and additional costs related to a person’s disability and, equally, a comprehensive menu of interventions provided by municipal social assistance authorities, regional health authorities, and employment services to address the varied needs of people with disability. On the surface, there is no indication of a particular service gap or a lack of services commonly available in other OECD countries. However, beyond this general observation, there are several important issues of potential concern.

Comparative cross-country data show that public social spending on disability policy in Italy is well below OECD average, and that most spending is used for disability benefits. The Enabling Law foresees that all changes must remain within the current budget envelope. Restructuring, simplifying, and unifying disability assessment should make the system more efficient, and free up resources. However, in the longer run the level of disability-related spending might not be sufficient to achieve the envisioned switch to a more personalised approach to disability, based on individual life plans and focussed on self-sufficiency. Already today, many people with disability in Italy lack access to support and with a stronger focus on functioning in assessing disability, this group could turn out to be larger than is currently known.

The adequacy of disability payments and services provided in Italy is difficult to assess, as it depends very much on the package of support that people receive – an area on which very little is known. The level of non-contributory disability payments is very low, for example, but many people will receive additional payments, such as attendance allowance, to cover their needs and costs. Data on income sources of Italian households suggest that people with disability rely on social benefits to a larger degree than on average across OECD Europe. However, this finding is driven by benefits other than disability benefits, including (early) retirement payments, unemployment benefits and social assistance. Poverty levels in Italy for households in which people with disability live are comparable to those in other countries and those for people without disability. In Italy, contrary to other countries, the broader benefit system (not just disability benefits) seems to reduce poverty risks more for people with disability than for other people.

The adequacy of disability services available in Italy is even more difficult to assess, lacking any systematic information on the number of service users and the number of people waiting for or in need of services but not currently receiving any. The limited data available suggest that per-capita spending for service users is quite high, be it for homecare services and services aimed at improving self-sufficiency or for more recently introduced employment services. The number of users of any of these services, however, is very low compared to the potential group of users, however defined. Italy therefore seems to face an access challenge, not a generosity challenge, as those who can access services seem well supported.

There are also two more general issues across the Italian system of disability benefits and services. First, there is a massive North-South divide. Poorer regions in the south of the country lack the capacity and resources to provide services in sufficient number; hence, both the number of service users and per-capita spending on services is lower than in the wealthier part of the country. In turn, the number of recipients of disability benefits, especially non-contributory benefits, is much higher in the South than in the North, with the benefit recipiency rate varying between less than 2% of the working-age population in some regions and more than 7% in others. This difference is the result of two characteristics of the benefit system: first, the fact that all benefits are funded from the national budget and, second, that non-contributory payments are more attractive in regions with fewer jobs and lower wages and eligibility for means-tested payments much more likely. Any reform of disability policy will have to address these equity issues.

Second, there is also a significant divide in Italy between severe disability and moderate disability. By and large, disability payments and disability services in Italy cater for people with severe disability (e.g. 50% of them receive a disability benefit) while people with moderate disability and people with highly prevalent mental health conditions will in most cases rely on the general social protection system (e.g. only 10% of them receive a disability benefit) and find it difficult to access disability services. Even disability employment services are reserved for people with a rather significant level of disability. In turn, disability mainstreaming in all policies and practices is a key issue for Italy, pointing to more general reform issues to boost social and employment outcomes for all people, which would also benefit people with disability.

Lastly there are also significant systemic issues that Italy could address, related to the complexity and the fragmentation of a system that involves many actors with shared responsibility between the national level (benefits), the regional level (health services) and the local level (social services). The decentralised nature of the state and the distribution of responsibilities requires a significant degree of information sharing and co-operation to avoid duplication of services on the one hand and service gaps on the other. At the subnational level, health and social authorities provide distinct supports that in many cases overlap, e.g. regarding homecare, but co-ordination between the two sectors is limited. Similarly, there are overlaps between national and regional efforts, e.g. for support of self-sufficiency and long-term care, covered by cash benefits and family leave at the national level and in-kind benefits and services at the regional level.

This report finds several strengths and weaknesses in Italy’s social protection for people with disability, and several reasons why reform is needed to strengthen system efficiency and effectiveness and address long-standing inequalities. Italy would be well advised to consider reform steps in the following directions.

Very little is known in Italy about which programmes are serving which groups of the population, making it difficult to assess the performance of the system (coverage, adequacy, and efficiency). Much could be done to improve the evidence base through systematic data collection and data sharing.

Invest in modern data management systems. At present, local services are not recorded in a single IT system at the individual level, which makes it very difficult to map the set of benefits and services that a person is receiving, particularly when services are received from both the social and the health realm. A solution that allows recording these data and storing them in data warehouses to later be linked across institutions and data sets, is essential to identify key areas for reform, and to facilitate the administrative work of public employees. The initiative of the social sector to implement a single IT system (SIOSS) is welcome, but efforts should be made to ensure the system does not impose technical barriers to linking the data from the social sector with data from the health sector or with national-level benefits data.

Use a single central authority to link and store administrative data. Linking administrative data across institutions poses technical and legal challenges many countries have overcome by establishing a single central authority responsible for data-linking. This also avoids the need for bilateral data exchange agreements and having to build technical capacity in every institution. In most countries, this single central authority is the national statistical institute. Italy’s National Statistical Institute (ISTAT) is well positioned as it has the necessary technical and analytical capacity.

Address privacy concerns. In addition to technical barriers stemming from a lack of a single IT system, Italian authorities experience difficulties in sharing and receiving data across institutions due to privacy concerns. Data protection regulation is often used as a shield to prevent any data exchange, in many cases applying stricter regulations than the European legislation (GDPR). Exchanging data across institutions requires establishing legal frameworks to ensure the protection of personal data and developing sound guidelines around using and sharing such data.

System inefficiency in Italy is related to a lack of co-operation across levels of government and associated financing mechanisms. Promoting co-operation and streamlining funding could increase transparency for users and delivery institutions alike, thereby ensuring better use of national and subnational resources.

Enforce regulations that foster co-operation. The regulatory landscape includes promising initiatives to promote co-operation across institutions, but their implementation is weak. This is particularly the case for the co-operation between the health and the social sector. The regulation lays out the importance of a single point of entry to deliver co-ordinated health and social services, with a single needs assessment to determine individualised plans. Concerted efforts are needed to make single points of entry a reality. The national government could take a stronger role through systematic monitoring and evaluation and the provision of financial incentives for regions to achieve a higher degree of service integration.

Create a forum to share experiences and learn from each other. Learning from good practices of other stakeholders – across regions, across municipalities and provinces within regions, and between the health and the social sector – can be beneficial to building administrative capacity, improving programming, and fostering co-operation. Systematic cross-institutional learning should be facilitated and promoted.

Develop financing mechanisms that promote better co-ordination of supports. A consolidation of subnational programmes with a similar purpose would best be achieved through a consolidation of funding sources. With consolidated national funds for sub-nationally provided in-kind benefits and services, it would be easier for regions to decide where to complement national funds with their own resources. Alternatively, national funds could be targeted at certain broader objectives (such as inclusion, independent living, or accessibility) without being earmarked to specific programmes, thereby giving regional bodies more control over the efficient use of these funds. Lastly, better co-ordination and service integration between the health and the social sector – on residential, semi-residential and most importantly homecare services – could be achieved, and service duplication prevented, through integrated and transparent budgeting.

Large territorial income differences and the current financing of the system results in poorer regions relying heavily on nationally funded social benefits and providing only limited support to the functioning of a person through in-kind benefits and services. Rectifying this situation and improving the capacity of economically weaker regions to provide effective services will be critical but this is not an easy exercise.

Address structural labour market weaknesses and spatial divides. Poorer regions in Italy have weaker labour markets, lower wages, and higher levels of informality. These factors influence the reliance on social benefits and also reinforce each other, as a high dependence on means-tested benefits promotes informal work. Addressing these structural economic and labour market issues across Italy is crucial. Over the past decade, the OECD’s Economic Surveys for Italy have identified some of the key areas to address, including improving skills and education, introducing active labour market programmes, boosting job creation, and rethinking the tax system, to break the North-South divide.

Promote the harmonisation of services through a focus on performance. To harmonise the delivery of health and social services, the national government has imposed minimum service standards. However, many regions fail to meet these standards, without much consequence. The current monitoring of minimum standards focuses on a series of line-item indicators, rather than focusing on the performance of the system as a whole. Using the existing regulation to harmonise the delivery of services, and making it binding and focused on performance, would help strengthen service quality in underperforming areas.

Prioritise the delivery of services over the provision of social benefits. The necessary shift in focus away from benefit provision towards the delivery of services for inclusion will not be achieved without financial incentives for regions and municipalities. Following the example of Denmark, and turning around the logic in the system today, the Italian Government could ensure full cost-coverage for services delivered at the subnational level, while imposing significant regional co-payments for non-contributory disability benefits, to make it attractive for regions and municipalities to shift their focus towards service delivery.

Labour market inclusion of people with disability is low in Italy, although not necessarily lower than for other vulnerable groups of the population. Moving forward, employment inclusion should become a key priority, implying a shift in the focus to in-kind benefits and services and a change in regulations to promote work.

Focus on early intervention. Effectively promoting the employment of people with disability requires intervening as soon as barriers to employment materialise. In Italy, where disability certifications play such a major role for receiving support, when people with disability receive financial and employment support, it is often too late. This implies that much more should be done for people with health conditions – many of which could turn into disability – at an earlier stage and before seeking disability certification, i.e. at a time when people are seeking help through general social protection programmes, in particular sickness benefits and unemployment benefits.

Develop effective and accountable Public Employment Services. Despite recent improvements, public employment services in Italy have a limited role in supporting job search through active labour market programmes. This general weakness affects the employment support provided for people with disability. There is an urgent need to improve the capacity of public employment services to deliver active labour market policies in general, and to increase the accountability for vulnerable jobseekers such as people with disability. There is also a need to expand services from only helping people who are listed for disability employment quota purposes to a wider group, with a particular focus on mental health conditions.

Link disability benefit to activation provisions. Many OECD countries have introduced comprehensive rehabilitation pathways for disability benefit claimants and/or temporary programmes preceding the claim of a disability benefit (e.g. Austria, the Netherlands, Norway, Switzerland), and many provide financial incentives to those working while receiving benefits. In Italy, receipt of a disability pension discourages work, especially for people with partial disability and partial work capacity. There is an urgent need to revisit the complementarity of disability pensions with work, and to consider introducing rehabilitation pathways and capacity-adjusted activation provisions.

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