Introduction

The Convention on the Rights of Persons with Disabilities (CRPD) is an international human rights treaty adopted by the United Nations General Assembly in December 2006, entering into force in May 2008. The CRPD aims to protect the rights and dignity of persons with disabilities, ensuring they enjoy the same rights and freedoms as all other individuals. The treaty promotes equality, non-discrimination, full inclusion, and accessibility in all aspects of life. Italy ratified the CRPD on February 24, 2009, demonstrating its commitment to the treaty’s provisions and integrating them into national law.

Despite this commitment, challenges persist. One significant case highlighting these challenges is the communication No. 51/2018 to the Committee on the Rights of Persons with Disabilities, submitted by Ms. Maria Simona Bellini, an Italian national. This case underscores the systemic issues family caregivers face in Italy and the need for comprehensive legal and social reforms. She claimed that the Italian legal system did not support the rights of the persons with disabilities she was caring for and failed to provide for any legal status and protection for family caregivers, violating articles 5, 8, 12, 16, 19, 23, 25 and 28 of the Convention. The Committee adopted its views in August 2022 (CRPD/C/27/D/51/2018).

The story of Maria Simona Bellini

Maria Simona Bellini, born in 1957, is an Italian national who has spent decades as the primary caregiver for both her daughter, Letizia Costanzo, and her partner, Salvatore Lentini. Letizia, born in 1988, suffers from multiple disabilities, including quadriplegia, epilepsy, intellectual disability, food and sleep disorders, self-injurious behavior, and an inability to communicate verbally. She requires round-the-clock care, including hygiene assistance, medication management, feeding, and night supervision.

Bellini also cares for her partner, who suffered a brain hemorrhage in 2007, resulting in diabetes, hypertension, cerebral ataxia, balance issues, memory loss, and depression. He requires continuous assistance with mobility, hygiene, medication, and daily activities.

The burdens placed on Bellini as a caregiver are immense. She not only provides constant physical care but also manages all institutional interactions on behalf of her daughter and partner. This includes coordinating with social services, hospitals, rehabilitation centers, and other bureaucratic entities to ensure they receive essential support. Her life is entirely dedicated to caregiving, leaving no time for personal or professional advancement.

Bellini argues that Italy’s legal system fails to provide family caregivers with essential protections such as pensions, indemnity, or health insurance. This lack of recognition places caregivers like her in a vulnerable position, affecting their health, finances, and overall well-being. Without legal status, she faces financial hardship, as there is no compensation for the care she provides to her daughter and partner. The only support available is a small allowance granted directly to the person with disabilities rather than the caregiver. Moreover, with the termination of remote work arrangements, she risks unemployment, as it would be impossible to balance work and caregiving. This affects her immediate income and jeopardises her long-term financial security, including her pension rights.

The legal battle: Seeking Recognition and Support

Bellini and the association she leads, “Coordinamento Famiglie Disabili Gravi e Gravissimi” (CNFDGG), have been advocating for legislative changes for years. CNFDGG gathered 200,000 signatures for a petition demanding legal recognition of family caregivers. They also filed lawsuits in Milan and Rome seeking social security benefits for caregivers. Both lawsuits were dismissed, with courts stating that legislative action, not judicial intervention, was required to address the issue.

In 2015, CNFDGG brought the issue before the European Parliament. While the Parliament acknowledged the severity of the situation and requested Italy to take action, no meaningful legislative progress was made.

With all domestic legal avenues exhausted, Bellini turned to the CRPD Committee in March 2017, filing a complaint alleging violations of multiple provisions of the CRPD.

Relevant CRPD Articles in the Bellini Case

The CRPD Committee considered Bellini’s complaint and issued its considerations about the following rights under the CRPD:

• Article 5: Equality and Non-Discrimination – Bellini experienced “discrimination due to association” because of her caregiving responsibilities. Losing her right to telecommute forced her out of employment, placing her in economic hardship. The absence of legal status for family caregivers indirectly discriminates against persons with disabilities.
• Article 8: Awareness-Raising – The Italian government failed to inform the public about the crucial role of family caregivers and did not provide training or guidance for them.
• Article 12: Equal Recognition Before the Law – The legal system fails to recognise the essential role of family caregivers. Family caregivers play a crucial role in supporting the legal capacity of persons with disabilities, yet their contributions are ignored by Italian law.
• Article 16: Freedom from Exploitation, Violence, and Abuse – The burden placed on caregivers exposes them to physical and mental exhaustion; however, support mechanisms are lacking or inadequate. The lack of legal protection increases the risk of neglect or mistreatment of persons with disabilities.
• Article 19: Living Independently and Being Included in the Community – The lack of legal recognition of family caregivers has serious consequences for the rights of persons with disabilities, including her family members, to live independently in the community and to achieve inclusion and participation in society. Without adequate support, the applicant’s daughter and partner’s right to live independently is undermined, as their care depends entirely on Ms Bellini’s unpaid labor.
• Article 23: Respect for Home and the Family – Italy’s failure to provide financial support to families of persons with disabilities creates economic hardship, making family life difficult to sustain.
• Article 25: Health – The legal system of the State party does not recognise the role of the family caregiver in the health system. The well-being of both caregivers and persons with disabilities is compromised due to a lack of medical and psychological support.
• Article 28: Adequate Standard of Living and Social Protection – The lack of financial assistance for caregivers leads to poverty and social exclusion. Article 28 states that persons with disabilities and their family members have the right to assistance measures from the State. 

Italy’s Defense and the Committee’s Ruling and Recommendations

The Italian government argued that Bellini had not exhausted all domestic remedies and claimed that, on the merits, certain financial protections already existed. Specifically, Italy cited such measures as the aid leave for caregivers under Law 104/1992 (three days per month), the Extraordinary paid leave for up to two years, and the national fund for family caregivers (introduced in 2017 but never fully implemented).

The CRPD Committee rejected these arguments. Regarding the non-exhaustion of domestic remedies, the Committee noted that Courts in Italy had already confirmed that the issue required legislative intervention, meaning further legal appeals were ineffective. The Committee, however, considered the claims under Articles 8, 12, 16, and 25 CRPD inadmissible, for being “not sufficiently substantiated”, as commanded by Article 2, letter e) of the Optional Protocol to the CRPD. 

Passing to the merits, the Committee found that the financial protections Italy cited were temporary and insufficient to address the long-term reality of caregiving. Italy’s failure to allocate resources to caregiver programs meant that existing policies were effectively non-functional. This entails a violation of the applicant’s daughter and partner’s right to live in the community, with choices equal to others, as set forth in Article 19 CRPD. Similarly, the lack of state support for the daughter and partner of the applicant impaired their right to live in the family and made their placement in an institution more likely, thus violating Article 23 CRPD. Finally, the right under Article 28, lett. c) to be assisted by the State in facing disability-related expenses was violated both with regard to the two persons with disabilities and the non-disabled applicant.

On August 26, 2022, the CRPD Committee determined that Italy had violated Articles 19, 23 and 28(2)(c) CRPD with regard to the applicant’s daughter and partner, and Article 28(2)(c) in relation to the applicant, Ms Bellini, all provisions being read in conjunction with Article 5 CRPD on equality and non-discrimination of persons with disabilities. The Committee issued the following case-specific and general recommendations to Italy:

1. Provide direct financial compensation to Bellini and her family, including reimbursement of legal costs.
2. Ensure the applicant’s family access to adequate support services, such as respite care, counseling, and financial assistance for caregivers.
3. Amend national legislation to ensure social protection programmes meet the requirements of the diverse range of persons with disabilities.
4. Inform persons with disabilities about their right to live independently and support their empowerment.
5. Implement safeguards to retain the right to autonomous independent living across all regions, and redirect resources from institutionalisation to community-based services and support for family caregivers, where applicable. 

Italy was required to report to the CRPD Committee within six months with an update on its progress in implementing these recommendations.

Conclusion

The recommendations provided by the Committee emphasise the need for Italy to undertake comprehensive legal and social reforms to support family caregivers. Implementing these changes would improve the quality of life for caregivers like Ms. Bellini while ensuring that persons with disabilities can exercise their rights fully. By addressing these issues, Italy can move closer to fulfilling its obligations under the CRPD and establishing a more inclusive and equitable society. In its Views, the Committee underlines that concerns about the effectiveness of State support to the independent life of persons with disability were expressed in the 2016 Concluding Observations to the first national report.

The Bellini case is a powerful reminder that disability rights are inseparable from the rights of those who provide essential, unpaid care. The CRPD Committee’s ruling offers a roadmap for reform, but it remains to be seen whether Italy will take the necessary steps to uphold its obligations. Until then, caregivers like Bellini continue to fight for their loved ones and their dignity and recognition in a system that has long ignored them.