Reshaping Disability Policy: We will get off our wheelchairs, if necessary

Over 11.000 people with disabilities are still permanently housed in institutionalised care type homes in the Czech Republic. They live there despite the fact that the United Nations’ Convention on the Rights of Persons with Disabilities was ratified thirteen years ago and despite the recent ruling by the Czech Constitutional Court, according to which housing services for people with disabilities should be provided in as little a restrictive setting as possible. Jitka Rudolfová, an advocate for the rights of people with disabilities, is fighting for change through a specific nonprofit advocacy group – Alliance for Individualized Support.

Simply put, the Czech Republic has no grand nor opulent staircases leading to its legislative buildings. The House of Representatives building has such a nondescript ground entrance that it is easily missed; the seat of the Senate is admittedly surrounded by a beautiful garden, but you would look for an equally notable entrance in vain. The buildings of the executive branch are no better in this regard.

As such, Czechia doesn’t have a single staircase which could be crawled up on with as much effectiveness as was done in March of 1990 by a group of disabled activists on the American Capitol Hill. At the time, around sixty of these individuals gathered under the shiny white building and got off their wheelchairs (or alternatively tossed away their crutches) and launched themselves up the 78 steps, so that lawmakers at the top would be alerted of both the physical and societal barriers, which people with disabilities have to overcome each day. This unique civil protest strongly contributed to the passing of the Americans with Disabilities Act of 1990 — a law which makes it illegal to discriminate on the basis of disability and guarantees protection from such discrimination.

Reasons for crawling in the Czech Republic

I would crawl too. There are many reasons for it. Over 11.000 people with disabilities are still permanently housed in institutionalised care type homes in the Czech Republic. They live there despite the fact that the United Nations’ Convention on the Rights of Persons with Disabilities was ratified thirteen years ago. And despite the recent ruling by the Czech Constitutional Court, according to which housing services for people with disabilities should be provided in as little a restrictive setting as possible. Meaning, the services should provide their clients with a chance at leading, or as close to as possible, a normal life. However, it is the reality for many of the clients of these institutions that a normal life is a distant dream.

I would get off my wheelchair for the current form of government’s financial aid for people with disabilities, from which they – on the off chance they do not have any interest in living in an institution – are supposed to purchase social services. Even with the highest degree of support, the money provided can buy a maximum of 5 hours of assistance per day.

What the person, whom the government itself declared completely dependent on the help of others, is supposed to do in the remaining 19 hours in a day is not discussed.

In all honesty it is simply assumed that such a person would either move into one of the aforementioned institutions or obediently live with their parents, who assist their child until utter exhaustion.

The need for crawling is also provoked by the constant need for proof of a person’s disability. Despite the fact that the state sends me monthly checks for my disability pension (it even supplied me with an ID confirming that my disability is in fact real) I still have to prove my health situation over and over. Why? I have no idea, the nature of my disability has not changed for 30 years.

One voice for all

There is no staircase to crawl up, however. And even if there were one, the question remains whether it could have the same dramatic impact that it once had in the US. That’s why I’ve placed my hope in a much less radical way of fighting for change — a nonprofit advocacy group. Because if anyone has a realistic chance of upholding the interests of people with disabilities in our Central European basin, which compared to overseas functions in a more corporatist manner, it’s definitely Alliance for Individualized Support. In the end, my dream of a Capitol protest took on the form of a position on the Alliance Administrative Board.

The Alliance formed two years ago as a project of a few Czech nonprofits, which represented various segments of people with disabilities or which directly provided specialised care. In order to make an impact on the longterm stagnation in the improvement of care and support provided to target population they developed the idea of an umbrella organization, which through its sheer size and a high level of expertise became an impossible-to-ignore player in the creation and redefinition of social policies on a national scale.

The idea of centralised and unified representation of people with disabilities quickly took off, and more and more organisations joined it. Currently, The Alliance is a collective of 40 organisations (those founded by patient groups, parent groups or those providing professional services) and works closely with another 20.

Like every respectable organization that’s just starting out, The Alliance first delved into an analysis of the issues to solve. Foremost, it has focused on areas in which the social care system fails the most catastrophically, in regard to the real needs of people with disabilities. For the purpose of its work, The Alliance has focused most closely on people whose disabilities aren’t easily compensated with equipment or aids, and who, as a result, are more dependent on the support of other people. It’s this group of people that most often falls through the cracks in the system and also the one that most often finds its members in demeaning and restrictive living conditions. Apart from people with disabilities, The Alliance also focuses on their families, whose members (predominantly women) often fill the roles of caretakers for decades, without any way to step out of this position with a clear conscience.

Where there is a need for change

On the basis of in-depth analysis and with an insight into tried and tested policies implemented abroad, The Alliance’s analytics team defined three key areas of social policies where reform would significantly improve the quality of life for people with the highest need for support, and their families. These are: accessibility of services, a fair assessment of needs, and a coordination of social support and care.

The first area has to do with 11 thousand clients with disabilities persistently committed into institutionalised care. It is evident that fully institutionalised care has, beyond any doubt, its place in the mix, yet people with disabilities should have a choice in where and with whom they live. The Czech Republic has, in its ratification of the UN Declaration, specifically committed itself to making sure that people with disabilities “are not forced to live in specific environments.”

It happens anyway. In some regions and especially in remote and isolated locations, being institutionalised is the only alternative of social care.

Often, these places are completely lacking in social services which are provided at home (personal care) or people commute to (day care or week-long-stays, auxiliary and relief services). It’s because to this day the state does nothing to make sure that all of its regions guarantee an access to these specific types of services which are designed to offer the least restrictive, yet often most effective types of care.

A fair assessment of care needs is related to the unfortunate way the allocation of financial aid is structured. Its amount is currently derived off of a normative account of everyday actions, which a person in a home setting is not able to perform on their own, and not on the actual amount of care and support which they need. Nor does the assessment account for the social situation in which a person is living.

And so it happens that a person bound to a wheelchair, who lives alone and without support cannot eat, dress, or even use the bathroom, has to make do with a maximum of 5 hours of assistance a day.

On top of that, the current system is rarely able to deal with people, whose physical condition does not prevent eating, dressing and going to the toilet, yet realistically need to be taken care of in even the simplest of tasks, as they are autistic or have intellectual disability.

The need for better coordination between care and support might sound a bit banal compared to the other two areas in need of improvement, but it’s not. The Czech system for care and support of disabled people is desperately confusing and completely user-unfriendly. It is codified in 66 laws and regulations, which currently operate with 4 different definitions of a person with medical disabilities.

Besides that, the system vigorously tests who has the legitimate claim for financial aid. It requires from its beneficiaries over 50 documents, proofs and forms. Yes, sometimes repeatedly. The clashes with this bureaucratic juggernaut take up both time and energy of disabled people (and those who care for them); time and energy that is sorely needed elsewhere. No advisory service, which would help with orientation in the system, or perhaps even help arrange for care tailored to the needs of each person, exists.

Action in the right moment

The Alliance recently presented the results of their findings on the Senate grounds before crowds of politicians, civil servants, and experts on social policy — with resounding success. It showed which changes are essential to enact in the system, so that people with disabilities and their families can lead better lives. The Alliance’s suggestion come at a time, when there is a real chance of passing a new social care bill – the one piece of legislation that affects the target population the most.

Now it is necessary to marshal enough of political will to reform the whole spectrum of policies, rules and regulations affecting social care.

Alliance is determined to enter and support all the necessary negotiations in various political arenas, be it on the government or local level; to enact a real qualitative change in the support system of citizens with disabilities and their families. On the off chance that the negotiations were to fail there is always a possibility of getting off the wheelchairs and tossing the crutches. In the end a suitable place would be found, despite the lack of a legendary staircase.


Jitka Rudolfová

has studied sociology and public policy. She was active in the Fund of Further Education and People in Need Foundation, among others. She has been an occasional advocate for the rights of people with disabilities. She has been confined to a wheelchair since birth.

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