Commission for the Rights of Persons with Disability
Skip Navigation

Graziella & Faith – What have we learnt?

Published 06 Sep 2021

X'tgħallimna mill-Pandemija? Il-pandemija tal-COVID-19 mil-lenti ta' persuni b'dizabilita' u l-familji tagħhom What have we learnt? The COVID_19 pandemic told through the stories of persons with disability

The Commission for the Rights of Persons with Disability (CRPD) is launching an exciting new campaign on the lessons learnt from the pandemic in relation to the disability sector. Called ‘X’Tgħallimna mill-Pandemija?’, the campaign gleans the findings and recommendations from a number of reports commissioned by CRPD during or about the COVID-19 pandemic. The reports point out not only how persons with disability were affected by the pandemic itself but perhaps more so by the social and economic impact deriving from restrictive measures put in place to control its spread.

Told through the stories of seven persons with disability, the campaign aims to show that behind every public policy and every public measure, there are persons whose lives can be affected immeasurably, and how persons with a disability cannot be excluded or forgotten, when public decisions are taken.

 

Graziella Bartolo Pizzuto, parent

It felt like my daughter was growing, month after month, while her development was somewhat at a standstill.

FINDING: The experience of services during the Covid-19 restrictive measures was one of frustration and fear by persons with disabilities and their families.

RECOMMENDATION: Create a system that categorizes persons receiving treatments and therapies according to the urgency that these are required.

Create a set of standards and operating procedures that service providers must orient towards during any form of restrictive measures arising from emergency situations.

You can read the following research reports below:

 

Mother and daughter hugging each otherDuring the first wave of Covid-19, my daughter Faith, who has Down syndrome, was only seven months old. At the time, we had started therapy sessions such as physiotherapy, speech therapy and occupational therapy months before and she was progressing very well. The partial lockdown between March and June, which brought therapy sessions to a halt, meant a lot of stress, fear and frustration for parents like us.  Thankfully, Faith was still too young to understand what was happening but my husband and I were very worried about the lack of therapy sessions and her development, which depends on constant therapy.  Apart from the sessions with her therapists, we were used to working with her at home but, when we found ourselves having to act as actual therapists, that was a whole different story.

We were offered online therapy services and we were thankful for the therapists who did their utmost in providing the best service they could through online means.  However, online meant that we had to do everything ourselves with the resources which we had at home, which were not necessarily the appropriate ones. It also meant that we constantly worried that we were not doing things right. For example, there were instances when for a week or two we thought that we were doing something we thought was in the right way but when we had the following online session, the therapist would say that it is not how it should be done.  And that would worry and frustrate us even more!

Mother and daughter Even prior to the pandemic, we were quite new at everything, so this really took the toll on my own mental and physical well-being. It felt like my daughter was growing, month after month, while her development was somewhat at a standstill.  I knew that she does best when she is engaged in a therapy session and she was in a phase when she had almost adjusted and bonded with her therapists. The sudden halt meant that someday we would have to restart from the very beginning.

In June, therapies resumed, some of which remained online for a while longer while others were not as frequent as before, reason being the new Covid measures in place at CDAU (Child Development and Assessment Unit).  Whereas prior to the pandemic, multiple sessions were carried out simultaneously, now appointments were more sparse.  The place itself could not cater for multiple sessions carried out by different therapists to be held at one go. Having said this, I believe that for future emergency instances – which could be anything other than a pandemic, such as floods, fire or a simple refurbishment – backup sites should be set up to offer a space where therapy sessions could be held.

I need to point out that there were therapists who went out of their way and did their very best to have our daughter readjust to physically being in a therapy session again and to recover what was lost during the previous three months.

What I felt was missing was the lack of planning before resuming with therapy. I believe that during those three months of partial lock down a set of standards and operating procedures should have been drawn up, discussed, and put into effect for when therapy resumed and for future instances when such restrictive measures arising from emergency occur. This would put the mind of both therapists and parents at rest, and our children’s therapies would not have been the last of the services to resume!