(In)dependent Living in Portugal

(In)dependent Living in Portugal

Decree-Law No. 129/2017 of October 9(1) embedded the so-called “Independent Living Support Model” in the Portuguese legislation. Even though the model has not been applied yet, it has already been amended by Decree-Law No. 27/2019 of February 14(2).

This legislative scenario, which does not even respect basic Personal Assistance requirements, represents an abusive appropriation of the Independent Living concept.  Calls that regulate the implementation of the model and the application of European Structural and Investment Funds introduce further misconceptions.

This framework is a disappointment to those who have been demanding and responsibly working for Independent Living in Portugal, either through advocacy and public affairs or by improving societal mindsets, through daily involvement within their local communities.

Almost a decade after the approval and ratification of the UN Convention on the Rights of Persons with Disabilities (CRPD) (3) and the Optional Protocol (4) by the Portuguese Government(5), the implementation of Article 19 on “Independent living and being included in the community” of the CRPD still remains a distant dream.

Following the publication of the General Comment No.5 (2017)(6), there is no excuse for national Governments not to apply real and accurate Independent Living requirements into legislation, budget allocation and practices.

Living independently and being included in the community are two intrinsically related principles, based upon choice and control, self-determination, dignity and freedom. Less than that is not enough.

Click here to read the full article of Fátima Paulo about (In)dependent Living in Portugal.

 

Image description: 7 young adults with T21, dressed with black t-shirts and blue jeans.

Photo credits:  Associação Pais21 – Down Portugal, self advocacy group.

References:

1.Decree-Law No. 129/2017 of October 9 (summary in plain English, without legal value) https://dre.pt/web/guest/pesquisa/-/search/108265124/details/maximized?res=en

2.Decree-Law No. 27/2019 of February 14 (summary in plain English, without legal value) https://dre.pt/web/guest/pesquisa/-/search/119556793/details/normal?l=1

3.Convention on the Rights of Persons with Disabilities https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html

4.Optional Protocol https://www.ohchr.org/en/hrbodies/crpd/pages/optionalprotocolrightspersonswithdisabilities.aspx

5.Assembly Resolution No. 56/2009 http://www.inr.pt/bibliopac/diplomas/rar_0056_2009.htm

Assembly Resolution No. 57/2009 http://www.inr.pt/bibliopac/diplomas/rar_0057_2009.htm

President Decree No. 71/2009 http://www.inr.pt/bibliopac/diplomas/d_71_2009.htm

President Decree No. 72/2009 http://www.inr.pt/bibliopac/diplomas/d_72_2009.htm

6.General Comment No.5 (2017) on living independently and being included in the community https://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?symbolno=CRPD/C/GC/5&Lang=en

4 Comments

José Manuel Silva

February 28, 2019, 8:26 pm

We understand the criticism but It is necessary to begin this new path.
We are working and we wil de develop a research project on the implementation of the CAVI (Help centre of independente living) of the Neuromusculares Portuguese Association.

Fatima Paulo

March 1, 2019, 2:27 pm

A little bit of history regarding Independent Living (IL) in Portugal. The “Portuguese Association of the Disabled” worked on the subject in the beginning of the century. IL was addressed in national and international events held in our country in 2009 (the year Portugal ratified the CRPD). There were great articles on Independent Living published at that time. In 2010, the “Portuguese Institute for Citizenship and Independent Living” (IPCVI) launched a public petition on IL https://peticaopublica.com/pview.aspx?pi=IPCVI . Then around 2011 the movement “Deficientes Indignados” brought the subject to the public attention.

After all the work done (mostly by persons with disabilities) in Portugal, it was only in 2017 that the government approved the Decree-Law 127/2017 and unfortunately decided that Independent Living should be implemented by Private Social Solidarity Institutions. I understand that it may be a “new path” and even an unfamiliar subject for most of these institutions, but for those persons who have been waiting for it for ages and proactively conceptualizing sustainable procedures to implement it and make it work, Independent Living is no novelty at all. Further to the above, I would say that there are more than reasons for “criticism”. Ii
n my humble opinion, there are even reasons for anger, resistance and more.

I’m sorry to hear about the “Neuromusculares Portuguese Association”, but I’ll leave the subject to those who have been excluded from it.

Rui Machado

March 1, 2019, 7:37 pm

I am a member/associate of the Neuromuscular Portuguese Association and, as everyone, I am completely excluded from any and all work of the association. APN (NPA) has never offered independent living and never will. What it defends is family assistance. It is important not to confuse concepts. Any study that will be done in the Neuromuscular Association will never be about independent living. Curiously, the entity that wants to do it is charitable and assistencialist. All of this is too bad and the APN (NPA) with the current president will never stand for Independent Living.

Pedro Nuno Oliveira

March 4, 2019, 1:59 pm

The problem of the implementation of the independent living paradigm in Portugal is closely related to a) a cleavage of power resources between DPO and other players; b) a communication strategy based on victimization and an c) ideologically compromised coalition strategy.

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