ENIL – Spain is among the countries most affected by the corona virus (COVID-19) pandemic. We asked the Forum for Independent Living in Spain for their account of what is going on in their country, and how it is impacting disabled people in the community and in institutions.

“From the start, with the surprise and the limited scope for action that the OVI had, we had to be organized. I think we all got caught off guard. Apart from the initial bewilderment, this situation has made us much more aware of our vulnerability and also forced us to learn how to find solutions for our immediate needs…. Undoubtedly the most complicated is the lack of masks and the fear of running out of assistants.” (a representative of OVI, a Spanish Center for Independent Living)

“Here in Alcoi, the situation is quite complicated, the army has already moved to disinfect the streets. In a nursing home, there are 45 infected with coronavirus…. Now, I can say that I have 67 hours a month of personal assistance, managed by a private company. The PAs have only been provided with a mask and safe passage, I have bought them the gloves and the gel.” (a PA user)

The health crisis unleashed by COVID-19 threatens to overwhelm the public health system in Spain and brings the need to introduce drastic measures to slow down the progression of the disease. Both the virus and the measures proposed are of general character, impacting the entire population. But, while we know that older and disabled people (referred to as ‘people with functional diversity’ in Spain) are especially vulnerable to the disease, we also need to make sure that their rights are protected during the pandemic, and that appropriate measures are put in place.

The Forum has always promoted an Independent Living model that allows us to live in our homes with the supports we need (Personal Assistance and technical aids). However, only a small number of disabled people have access to personal assistance,  while many others can only get home help services, informal support from their families, or are forced to live in institutions.

As part of the measures put in place by the state to deal with the pandemic, those aimed at disabled people include: disabled people may go out accompanied by another person to carry out the basic chores allowed (go to supermarkets, pharmacies, tobacco shops and/or gas stations); an important economic injection has been approved to cover the needs of “dependent” people, which has not yet been specified; information brochures on prevention have been distributed to disabled people and also those who support them or provide care.

However, there has been no reference or specific measures targeting disabled people who have personal assistance and live independently. The few Centres for Independent Living (OVIs) that manage independent living and personal assistance projects in Spain have not had direct communication with the autonomous administrations on which they depend. This has resulted in the following:

– There has been no provision for protective equipment for personal assistants (gloves, masks, disinfectant gel etc.), who have to keep coming to work at our homes. Nor for disabled people, who are in the risk group. Each person had to acquire this on their own, both for the assistants and for ourselves.

– No guidance was provided to OVIs on how to deal with corona virus sick leaves of our personal assistants.

– Some OVIs were asked by autonomous administrations to communicate positive cases among users and personal assistants.

– When the government, administrations and the media refer to the work of the personnel in the health, labor and social fields, personal assistants are never mentioned.

The Forum considers that personal assistance and independent living are the best option for disabled people, even during the pandemic, as they allow us to stay home, meet our basic needs and continue our daily activities, without putting others at risk. The situation is different for those who do not live independently. For example, day centers for disabled people have been closed, which implies that their users will have to stay at home in the care of their families (if they have them). In Valencia, COCEMFE has announced to people in need of support that they will no longer have home support services from March 16th. This has been the case in other regions too, where home help services were either cancelled or reduced to meet the very basic needs, leaving family members to cover for all other needs.

Despite that, we continue to see a lack of recognition for independent living. As disabled people living independently with personal assistants, we would like to know the answers to the following questions:

1) What are the measures taken to ensure that professionals working in the homes of disabled people (Personal Assistants and home help service) can access their homes in case of movement and/or use of public transport restrictions?

2) What are the plans to ensure these professionals have the necessary protective equipment to carry out their duties?

3) What are the plans if a staff member in an institution tests positive for COVID-19? What measures will be taken to minimize infection? Will all other staff be quarantined? How will they be replaced? What are the plans if the facility staff become ill and do not come to work?

4) Is there any specific training to prepare these professionals for COVID-19?

5) What are the plans to communicate emergency information to people who are blind or deaf, or who have other access needs?

On a positive, it is necessary to emphasize actions of solidarity. We must add our own, because we have plenty of experience in handling complex situations. We live and survive daily in situations of isolation, harassment, institutional confinement and social abuse, and other types of violence. That is why we consider ourselves skilled to deal with certain situations which we find ourselves in at the moment. While this may sound strange to some, we could say that we are like cockroaches that survive everything – because our survival is not only at stake, but proven through years of contempt.

Day-to-day developments across Europe show that many policymakers, including the European Union, are insufficiently prioritizing the impact of COVID-19 on the Qmillions of persons with support needs and vulnerable people across the continent. Whilst the European Union’s response has been quite active on issues linked to health, the interests of businesses and on jobs, it has been invisible in securing the social rights of persons with support needs. EASPD strongly urges the European Union to develop a coordinated response to counter the social impact of the COVID-19, with a dedicated focus on the care and support needs of persons with disabilities, older persons, children, homeless people and other persons with support needs and their families.
 
Social care and support providers -and their 11 million workers- are taking significant measures to ensure that they are able to continue to provide the most fundamental of care and support for the millions of persons with significant support needs who rely on such services; including many persons with disabilities, older persons, homeless persons and others. These social service providers have rapidly adapted their services to the current situation in the best possible way – prioritizing services, rapidly shifting to online tools and ensuring face-to-face support in the most complex situations.
 
Yet, every day, as the pandemic progresses, EASPD has been informed that 1,000s of services have closed or are at risk of closing, due to a lack of consideration given to social care under this crisis by too many public authorities, who have – in many cases – stopped or not guaranteed future funding, putting at risk not only the jobs of the care professionals but also the well-being of the service users (persons with disabilities, older persons, homeless persons, etc). Other significant challenges include not providing the right attention to issues of health and safety of social care professionals who are asked to work in unsafe conditions (for themselves and the service users) due to a lack of personal protective equipment (PPE). There are also many cases of public authorities acting too slowly to respond to the developments by social service providers, who have had to change their services to respond to these conditions (for instance, through telecare, online therapies, food distribution), yet who are not funded for such actions.

If continued, the consequences of such inaction by public authorities will be drastic, with 100,000s of people without the care they require, placing even more pressure on family carers and on the healthcare (and other public services) systems. It will also lead to 100.000s of job losses of highly skilled care workers at a time when they are most needed. It can even lead to death, as was the case in Spain recently with several older persons found dead in their care homes due to ill-functioning service provision.
 
Following these developments, Ms Kirsi Konola, Vice President EASPD, states “Policy-makers need to pay special attention to diminishing the social damage to vulnerable persons caused by the coronavirus. Social services need targeted public support to ensure we can cover the basic needs of our service users. We need guaranteed funding to pay our staff. We need the equipment to ensure we can work safely. Too often, this is all missing! Where is Europe on the social aspects of the coronavirus crisis?”
 
Mr Jim Crowe, President EASPD, argues that “the European Union needs to take concrete action to ensure that basic social rights are met, with particular emphasis on those most vulnerable. Right now, all we hear is support for businesses and jobs. As important as this is, where is Europe on the social aspects of the COVID-19 crisis? We need a European coordinated response to counter the social rights impact of the coronavirus, not just the economic!”.
 
EASPD strongly urges the European Commission to develop a European coordinated response to counter the social rights impact of the coronavirus. This would include a clear message that the European Union must take urgent action to ensure social care & support for those who need it and guarantee respect for those who provide care and support for them (both the professionals and the caregivers). In more practical terms, this means a clear recommendation that Member States take immediate action to ensure that social care and support providers are able to provide the fundamental social services required; through

• day-to-day engagement with social service providers to understand evolving needs and trends
• the guaranteed funding for social service providers; fitting their adapted models of service provision, including – of course – not-for-profit organisations;
• ensuring the sufficient staffing of services, with measures such as adapted salaries to value their expertise and commitment under difficult circumstances, facilitating recruitment procedures, identification of a pool of reserve care workers, from social work students and volunteers, etc
• pro-active measures to ensure that all care and support professionals working in face-to-face contact are equipped with the relevant PPE that can enable to work safely.

The European Commission must support this clear recommendation with supportive measures of its own, including ensuring that ESF is used and adapted to the current needs and working methods of social service providers, more solidarity between Member States to ensure that PPE are available to social care and support professionals where needed most and the creation of a European Emergency Knowledge Centre for Social Care and Support -together with relevant EU organisations- to ensure the exchange of information, expertise, and practices across Europe.

by Ellen Stumbo | Mar 19, 2020 

Many parents of children with disabilities are intimate familiar with the feeling of isolation. You may think we are already experts — that this feels a lot like our normal — except it doesn’t.

While our online support system remains, we have lost “the village” that helps us care for our kids.

Our school district canceled school this week, next week is our spring break. Our superintendent said, “There will be no instruction this week.” It means we haven’t done much learning yet, we are on an unexpected two week “vacation.”

This week was for teachers to make plans and figure out how to teach their students remotely. However, last Friday my oldest daughter said every teacher showed them how distant learning was going to work for their respective classes. Her teachers already had a plan, they knew this was coming and were ready. 

Perhaps there could have been remote learning happening this week — one week before spring break. Instead, students were encouraged to turn in their late work and use this as an opportunity to catch up (all students in our district have an iPad). 

However, I suspect special education teachers really needed this week to figure out how to best serve their students. Some students, like my daughter with Down syndrome, will not be able to access their education via distant-learning the same way her nondisabled peers do. Her teacher is creating learning plans for each student and targeting their individuals needs. She is also aware that her students cannot do the work independently, so she has to figure out how to help us — the parents — work with our kids on reaching goals and work on academics.

As soon as spring break is over, classes will resume remotely and the real work begins. I have one typical child who will thrive with this setup. She is the kid who will be able to learn at her own pace, get her work done, and have most of the day free to practice piano, learn to play the guitar, paint, write, read, read, read, and read some more. 

But I also have two kids who have several supports set up at school so they can best learn. I am now their support. 

Their only support. 

And the thing is, both of my kids will need one-on-one assistance for them to successfully make it through distant learning — and there is only one of me.

This is going to be really hard on all of us. I don’t have a teaching degree, I am not a therapist, and I don’t do great at explaining science or math. 

What are we going to do?

We are going to do the best we can. But the truth is, their education is not going to be ideal. Not to mention, school work is not the only thing we have to do. We still have a house to clean, clothes to wash, showers to take (yes, kids, even if we do not get out of the house we still take showers), three meals a day to make…

We once had a team, now I am a physical therapist, occupational therapist, and speech therapist. I am the teacher. I am the special education teacher. I am the principal. I am the paraprofessional. I am the reading specialist. And I’m also the mom. 

I am somehow responsible to keep afloat what takes an entire team of professionals to accomplish.

It is more than overwhelming.

And the days are harder when your child asks to get out of the house, “I want to go to the park and swing,” “I want to go to Target,” “I want to see my friends,” “I want to go to school!”

Many of our children with disabilities thrive on routine and their routine was disrupted with no time to transition. Now our routine-driven kids are expected to change their established routines at home and accept their parent as their teacher, therapist, and friend.

Our kids are being stretched, just as much as we are.

The truth is, there may be days when this feels like too much. So we are going to watch YouTube and sit down and color while we listen to a book on tape, because this new routine it is too much for us all.

 And I am going to be okay with that.

We will take this one moment at a time. Just one moment at a time.

I suspect there will be tears.

I suspect there will be battles of the will.

I suspect there will be instances when we will all need a break from each other.

But I also hope we get closer. I hope we become kinder with each other and more understanding of our limitations.

These coming weeks will be brutally hard, yes.

But we will push through — it’s what we do.

We parent kids with disabilities. We do hard things every day. This perhaps is harder than any of us suspected or were ready for, but we will get through it.

Dear fellow parent, we are in this together.

And thank goodness we have each other across the screen!

Within the project Walk the talk with PWDs Center for Independent Living Serbia wrote to Ministry of State Administration and Local Self-Government to make their web site accessible for blind voters. They responded very promptly:

Regarding your address to the Ministry of State Administration and Local Self-Government in order to enable blind and partially sighted persons to electronically check that they are enrolled in the electoral roll, we inform that on the website of the Ministry – portal for checking the enrollment in the electoral roll https: //upit.birackispisak .gov.rs implemented the possibility to enter them via audio file – which will pronounce the letters from the picture, thus enabling blind and partially sighted persons to electronically check that they are enrolled in a single electoral roll, in order to be equal with the rest citizens exercised their electoral rights.

At the same time, we would like to mention that due to new circumstances, we postpone informing citizens about the advancement of the rights of blind and visually impaired persons, that is, after the state of emergency, we will inform voters that we have upgraded the Ministry’s website in order to enable blind and partially sighted persons to access the Uniform Voters Register and carry out checks data.

Best regards,

Registry and Registry Division

Ministry of State Administration and Local Self-Government

web: www.mduls.gov.rs 

CIL Network meeting was held in Smederevo February 25th 2020.

There were representatives of all local CILs and representative from Ministry for Labor, Employment, Veterans and Social Welfare, Mrs. Julijana Stanisavljevic.

Participants discussed 2020 plans, individually and within CIL Network 

 Members of local CILS are included in Teams for assessment of accessibility of pooling places for persons with disability.

Our CILs are represented by Slobodan Milojkovic in Jagodina, Dragan Stojanovic in Smederevo, Goran Stojanovic in Leskovac and Snjezana Risimovic in Cacak.

This is a good way to highlight the visibility of right to free and independent way to vote on election day for persons with disability.

CIL Serbia trainers held two training for PAs in December.

The first one was in Novi Sad for Special school Milan Petrovic, December 21-23, and the other one was in Beograde, December 23-25