Luke Clements

A Landmark UN carers decision

The UN Committee on the Rights of Persons with Disabilities has handed down an important decision concerning the rights of unpaid carers in the case of Maria Simona Bellini v. Italy (3 October 2022, Communication No. 51/2018).

The applicant cared for her profoundly disabled daughter as well as caring for her disabled partner.  Her daughter’s needs required, in effect, 24 x 7 care either at their home or at a day centre – which the applicant also had to attend to provide essential assistance.  In order to support her family, the applicant was permitted by her office to work from home (to ‘telecommute’) but in 2017 this permission was revoked and in consequence she lost her job.

The Italian social system provides no legal recognition or support for family caregivers and the only state assistance the family received was ‘a very low disability allowance’ for their daughter and the applicant’s partner (ie for persons with disabilities). The applicant took domestic legal proceedings to challenge this state of affairs – but without success.  She then made an individual complaint to the UN Committee on the Rights of Persons with Disabilities claiming that the facts amounted to a violation of the UN Convention on the Rights of Persons with Disabilities (CRPD).  The UK has also ratified this Convention and has also accepted the right of individuals to make similar complaints.

Although the CRPD provides no rights for family carers, the Committee accepted that in many instances ‘the rights of persons with disabilities cannot be realised without the protection of family caregivers’ (para 6.8) and accordingly that Article 28(2)(c) of the CRPD ‘recognises the right of family caregivers to State protection provided that this recognition is indivisibly linked to the protection of the rights of family members with disabilities’. 

Article 28 concerns the right of persons with disabilities to an adequate standard of living for themselves and their families and Article 28(2)(c) requires the State to secure this right without discrimination on the basis of disability, in order to:

‘ensure access by persons with disabilities and their families living in situations of poverty to assistance from the State with disability related expenses, including adequate training, counselling, financial assistance and respite care’.

 

In its decision the Committee noted that (para 7.4):

disability support services must be available, accessible, affordable, acceptable and adaptable to all persons with disabilities and be sensitive to different living conditions, such as individual or family income, and individual circumstances.[1] … [and reiterated that states had a duty to] provide adequate support services to family carers so that they can in turn support their relatives to live independently in the community. This support should include respite care services and other supportive services.[2] … [and that] financial support is also crucial for family carers, who often live in situations of extreme poverty without the possibility of accessing the labour market and that states parties therefore have the obligation to provide social support to families of persons with disabilities and foster the development of counselling services, circles of support and other adequate support options.[3]

 

That Committee concluded that (para 7.6):

the lack of individualized support services provided [for] … the daughter and partner; the failure by the State party to promote, facilitate and provide appropriate legislative, administrative, budgetary, judicial, programmatic, promotional and other measures to ensure the full realization of the right to live independently and be included in the community as enshrined in the Convention; and the failure to provide adequate support services to family carers so they can in turn support their relatives to live independently in the community, including by providing respite care services, other supportive services, financial support, social support, counselling services, and other adequate support options amounts to a violation of the … daughter’s and partner’s rights under article 19 of the Convention.

 

The UN Committee’s decision confirms that a failure of support for carers can be conceptualised as unlawful associative discrimination on the basis of ‘disability’ echoing the finding in Coleman v Attridge Law 2008.[4]

While it might be argued that the UK provides more substantial support for disabled people than the ‘very low disability allowance’ paid by Italy – this is something that many commentators would question.  What is clear is that the UK’s carers allowance is pitiful (at £69.70 a week) and that many UK carers will consider the difficulties they experience to be comparable to those of the applicant, Maria Simona Bellini.

 

Posted 6 December 2022.