Above, photo of a beautiful hamburger with written 'expectation' and beneath, a sad hamburger with written 'reality'
Above, photo of a beautiful hamburger with written ‘expectation’ and beneath, a sad hamburger with written ‘reality’

I have been disabled for almost 20 years. When my health deteriorated to the point that I needed support for my basic needs, I started independent living activism. At that time, I found out there was no proper service for me. It was quite a shocking revelation, especially since I used to work in the helping profession and somehow I assumed if I needed help, I would get it. Eventually, I was forced to either apply for living in an institution or find help and train my assistants in self-determined personal assistance on my own.

The law and the reality

Although the Czech Republic has a law on personal assistance, in reality, most of the people who need it have no real access to it, especially in medium-sized and small towns. In fact, PA services are accessible only in big cities and we could count them on one hand.

The service should be provided 24 hours a day, according to the law. Most service providers have assistants available only during standard working hours (8 AM – 4 PM) and only on working days (no weekends, no holidays). People who need support in the evenings (help with hygiene, getting into bed for sleep,..) are left on their own. They usually get diapers at 4 PM although they don’t need them, they don’t have incontinence, and they are left in bed till the next morning. Sometimes visits are simply cancelled and not rescheduled.

Service providers tend to make excuses for lack of their capacity. There is a list of tasks that they are supposed to do according to the law and they don’t meet these requirements. I am in daily contact with hundreds of people with disabilities who have no proper support in access to health care or education. Sometimes we have to wait for our needs to be met for many days (for example medication from the pharmacy, groceries,etc.) We have no possibility to go out for a walk, to attend a culture program, to be part of the community, find a job, live on our own. Social services barely help us with the basic needs.

Self-directed personal assistance* – as rare as a rainbow unicorn

There is no true self-directed PA. Responsible bodies don’t even know about this kind of assistance. Educational trainings for PAs, which are required by the regulations, are mostly useless as they are standardized. There is no education about self-managed PA and independent living principles, not only for PAs themselves, but even for persons with disabilities. In fact, the service providers decide about our lives, about the exact kind of support which we need.

Individual personal assistance plans are scheduled for a week or even a month ahead. If a person needs another task to be done, they often have to get someone to help them on their own, because there is no capacity of the official service provider and the schedule is given. But that is not how life goes. Nobody has everything perfectly planned weeks ahead.

*Self-determined PA (self-managed, self-directed) – personal assistance directed by the person with a disability. We are all different and have different needs. So it’s essential to train our assistants on how to help us individually. There isn’t only one correct way of assisting, so standardized training does not work.

How can this be changed? We need attention!

We have several examples of good practice across the country. As I have written above, they are mostly found in large cities. Personal assistance services there are helpful in enabling people to live a truly independent and fulfilling life. They even help with finding a job, an apartment or going on holiday. But it is sadly still rather an exception than a matter of course.

Officially, we do have the right to make a complaint (to the head of the social service provider, to the social department of the municipality, Social Services Inspection,.. and so on), but even if we do so, this is often left without any further action. There is no functional complaint system, nor checking how social services are provided. Not to mention the obvious fact that many of us are scared to complain about their social service provider, because our lives depend heavily on their help.

Regional authorities are responsible for fulfilling the social service needs of people living in the area, including personal assistance, by law. But it doesn’t work and we are desperate to be heard.

People with the need for more hours of PA a day and having no family or friends’ support are forced to apply for living in institutions. I was personally forced to live in an institution when my needs for an official PA by local social services were about 6-8 hours a week. I was told there is no capacity for such „extensive“ care needs. Living in a community is largely neglected, while EU funds are still being used for building and renovating institutions.

Monitoring the implementation of the CRPD is also very problematic. This duty was delegated to the Public Defender of Rights, but this authority can only check the state institutions. Implementation of CRPD is complex and should be done in every aspect of our lives. I have sent several suggestions and complaints about the social services’ work, lack of access to health care, discrimination, etc. in the past several years. Nothing has been done about it, and nothing will be done, because social services aren’t formally state-run organizations, although they are funded and governed by regional authorities.

Making sure these issues are seen and heard is my contribution to finding a solution. Among the general public, it is still widely assumed that if you aren’t able to take care of yourself, you have to live in an institution. It’s the thought and the stereotypical view of the vast majority of society, but unfortunately of the vast majority of those in charge too.

We are thankful to our member Zuzana Navratilova for writing and submitting this article.