"The fact that a person has more needs does not mean that they cannot live in the community. It simply means that we as a society need to do more to make it possible," says professor Shirli Werner, an expert on the rights of people with disabilities. Werner sat down for an interview with Davar to discuss the program recently adopted by the Ministry of Welfare and Social Affairs to replace all residential hospitals in the country with community housing for those with disabilities.
Last month, the conclusions of the Dotan Committee were published, which recommended that all out-of-home settings for people with disabilities (dormitories, hostels, etc.) should be closed within five years, and that their residents should be moved into the community. The committee was established by the previous Welfare Minister, Meir Cohen, in response to two shocking events that came to light last year concerning facilities for people with disabilities and special needs. In May, three residents of the Beit Dafna housing shelter died, most likely as a result of food poisoning, and in July and August indictments were filed against 13 workers at the Kfar Bnei Zion care facility accusing them of mentally and physically abusing residents.
The Ministry of Welfare and Social Affairs initially announced that they would adopt the committee’s findings, but since then reservations and concerns have been voiced, including some from within the Ministry, mainly concerning the decision’s budgetary implications. Still, according to Werner, the difficulties and costs must not prevent the actualization of the basic right of every person to manage their own way of life and to be a part of society.
Werner is a faculty member at the Paul Baerwald School of Social Work and Social Welfare at the Hebrew University of Jerusalem, and also serves as the co-director of the Center for Disability Studies. In addition to her academic background, she has personal experience with the issue as the mother of a child with a motor disability.
"In Other Countries, Deinstitutionalization Happened a Long Time Ago"
Did you expect the committee to recommend the complete closure of institutions for people with disabilities?
"Absolutely, yes. For me, as someone who deals in the field of disability, this is self-evident, and it is a necessary step. If you go to other western countries, such as the USA, Great Britain, Australia, etc., the process known as deinstitutionalization happened a long time ago, and people with disabilities have lived in the community, in some places since the ‘80s. In fact, we in Israel are starting to talk about this really late.
"These findings did not come out of nowhere. More than a decade ago, there was an expert committee here that reached the exact same conclusions, including a recommendation to close the large institutions. After that, in 2012, the State of Israel signed the UN Convention on the Rights of Persons with Disabilities and ratified it. This is a convention that speaks very clearly about the fact that people with any kind of disability should live in the community like all other people, without defining what kind of disability, or at what level."
If Israel signed the treaty in 2012, why are we only talking about it now, a decade later?
"Because it’s easier to operate larger facilities. There is a fear that smaller facilities, for instance an apartment that houses three or four people, will cost more, although this is not necessarily true. In addition, there are many factors to consider. Operators who received a contract to operate a large housing facility are unlikely to want to give up running a large institution and establish a smaller facility."
Werner says that following the findings of the 2012 committee, a sort of interim solution was created in Israel: satellite branches of larger institutions were opened within communities, which in practice, did not fundamentally change the situation. "As a response to decentralization, large institutional facilities were given the option to open an extension more within the community. But it was just window dressing.
"Some of the branches themselves remained relatively large, around 16-20 residents, and the staff remained the same, which meant that the mindset of what it means to be living in the community did not necessarily happen, and many things remained unchanged, such as fixed meal times and other characteristics of larger institutions. This is not what deinstitutionalization means."
What is the principle of deinstitutionalization?
"Deinstitutionalization speaks of a life within the community, in an apartment, with aspects of independence. For example, the right of a person to choose where they live, and with whom they live. This is a very basic right that is not given to residents in an institution, which is also written in Article 19 of the UN Charter."
"People Should Live in Communities and Receive the Support They Need"
The term 'people with disabilities' covers a large group of people with very different characteristics. A person in a wheelchair does not necessarily have the same needs as a blind person, and certainly not the same needs as a low-functioning autistic person. How can you talk about them all as one?
"It’s not a one size fits all solution. But you can definitely say that people with disabilities, regardless of their needs, and for that matter people in general, should live in the community.
"The next step, after we have such an agreement, is to think about what it means, how to achieve it, and what the solutions are. Obviously, person X and person Y do not have the same needs, and neither should they receive the same services. Each should receive the specific and relevant services they need."
Still, is it right to close all the institutions, and not have them as an option at all? What about those who may benefit from a closed institution? People who need help eating, showering, going to the bathroom? People who can't cook for themselves or lead an independent life?
"There is no such thing as someone who 'belongs in an institution.' For example, there is no reason why it can’t be provided in the community. For instance in nursing, we see elderly people or other populations that need services, and they receive them in the community.
"Furthermore, when we talk about living in the community, it’s not about 'abandoning people' and leaving them without assistance. It means that people should live in the community, and everyone will receive assistance and support according to their needs. If there is someone who needs help cooking, or shopping, or in the shower, they'll get it."
Changing Perspectives
It’s clear that the current process is closely related to the failures that came to light at the Bnei Zion residence in Kfar Saba, where staff members abused residents, and at Beit Dafna in Holon, where three residents died due to food poisoning. But is the decision to close all institutions following these extreme cases akin to 'throwing the baby out with the bathwater'?
"Perhaps these failures were a trigger for us, as well as the families' insistence that such a committee be formed and investigate in depth. But unfortunately, when these things happened, none of us, the professionals who work in the disability field, were surprised. Once people are locked up in institutions, these things are an accident waiting to happen."
And can the transition into the community prevent such failures?
"Obviously it doesn’t solve everything, but it’s a start. With the very existence of these institutions, people's basic rights are taken away. Where to live, what to do, when and what to eat, with whom to talk, choosing to live in a room on one's own or with others and what to do in one’s free time. These are the most basic things we have in life, and for some people with disabilities these choices are taken away from them. Even if it doesn’t reach the level of the two disasters mentioned above, it’s in the essence of closed institutions."
What kind of problems are likely to occur at closed institutions?
"Let's put aside the big disasters. In the Dotan Committee report there are some very distressing accounts, not just the poisoning or the abuse or other 'big' things, but more day to day examples. For example, two residents who, after there was an instance of sexual abuse between them, nevertheless continued to live together in the same setting, or settings where 9-year-old children live together with the elderly, or settings where residents do not have their own clothes, and they share clothes, even underwear."
Werner offers a very simple guideline to examine the problematic nature of closed institutions. "You have to look at things and ask, would you be willing to live like this? Things I wouldn't want, either for myself or for anyone in my family, there is no reason for a person with a disability to accept those living conditions."
"You Can't Decide What's Right and What's Wrong Solely Based on the Cost"
Moving to community housing has financial costs. The Israeli government is in no hurry to spend money on social improvement projects. Do you think it will be the same for this?
"First of all, it won’t necessarily cost more. We can see from what has been done in other countries that in the end [community housing] is not more costly than operating an institution. What will cost a lot is the transitional phase. If they start moving people into the community but the large institutions remain, there will be a phenomenon of rotating doors – the more residents who leave, the more new ones will just replace them, which is what happened in the previous incarnation.
"In any case, it shouldn’t be a factor in my opinion. There are people here, citizens of the State of Israel, who deserve to live in the community. If it costs the same, great, and if it costs more, let it cost more. This is the role of the state, let the economists do the math."
Aren't you afraid that the government will avoid responsibility? It was recently revealed that the Ministry of Health has not updated the level of rent assistance stipends for people with mental disabilities in the community for 13 years, despite repeated promises. This could also happen to all people with disabilities.
"These are questions that relate to the 'how,' but first of all we have to deal with the 'why.' We have to align ourselves with the reasoning that we need to shift to community living, and then we have to think about how to achieve it. True, it is easier to monitor one institution to see how everyone is doing, rather than monitor smaller apartments all over the place. This needs to be resolved. But this is certainly not a reason to reject this move. The fact that for many years now, most western countries haven’t had any such thing as huge closed institutions for people with disabilities proves to me that it is possible."
Already today there is a very severe shortage of care workers, nurses, rehabilitation instructors, other health professionals and everything else that is required to give comprehensive care to those in the community. It’s difficult to hire enough staff, and this situation is only getting worse. Can you really see a speech therapist or a nurse, who until now worked in one institution with 100 residents, transitioning to moving between 50 apartments in different places to provide the same service?
"This is absolutely a challenge that must be faced. There will be a number of such challenges. The state will have to make things more accessible, establish infrastructure, make existing infrastructure accessible, and much more. But in terms of the general approach, we need to reboot the situation. We have to start looking at things from a new perspective. You can't decide what's right and what's wrong solely based on the cost. We have to aim for where we want to go, and work hard to get there."
As a mother of a child with a disability, do you trust the state to ensure that your daughter will live in an apartment and provide her with everything she needs?
"There is no doubt that this raises concerns. But even when you are in a closed institution, no one guarantees that these services will really be provided, and so many times they are not. And even if they are, nothing guarantees that these services are any good.
"What's more, sometimes our intuition about institutionalized care is wrong. For example, one of the reasons why a person is often referred to an institution is the fear that otherwise they will be at risk of danger or harm. But various studies show that people with disabilities are more likely to be harmed in institutions. Institutions are not focused on dealing with this issue.
"If we return to looking at healthcare scenarios, another example is that I can always choose who I would like to treat me, I can look for doctors that suit me, and of course decide who I would not like to treat me. This right is taken away from a person in a closed institution, where there is no choice apart from the doctor or nurse that belongs to the institution. And as I said already, every right I have, should also exist for a person with a disability. Whatever it takes to make that happen needs to be done."
"Deinstitutionalization is the Overarching Goal; Now We Need to Sit Down and Plan"
But in the reality of privatized welfare services, wouldn't the change simply be a band-aid solution? Many of the problems are related to the privatization of services from the state to companies and associations, and the cheap contracts for operating institutions. Does it really matter if the association that operates an institution operates 10 apartments instead?
"I don't think that the concepts of private entities and proper treatment contradict each other. Apartments need to be operated, and they should be operated properly and not be substandard. We need to give them appropriate resources, find good operators, and for the state to be there as a supervisory body and act around it. Just because people should live within the community, it doesn’t mean that this is the only thing that needs to be done. The decision on deinstitutionalization is the overarching goal, and now we need to sit down and plan. Resources, adjustments, services, all the necessary comprehensive care."
Do you believe that the welfare ministry can achieve all this within five years?
"Five years is enough time. I think no matter the amount of time suggested, the government would still have wanted more. It's not about time. It's been about 15 years since the previous committee and nothing has happened. It's about commitment. That’s why it's important to start now."
Where do you get your optimism from?
"As a mother of a child with a disability, I have to remain optimistic. I see what is happening in other parts of the world and I know that things are possible, you just have to want it. And I think that there really are people in the Ministry of Welfare and Social Affairs who care about the quality of life of people with disabilities."
"Communities Need People with Disabilities"
Werner emphasizes that when people with disabilities live within communities, it not only benefits them, but also the society around them. "I also know that as much as people with disabilities need the community, the community needs people with disabilities. As soon as people are locked up in an institution, it’s very easy for the community to not take any responsibility for them. They are outside of your community, so you don’t feel the need to care about them. The doctor doesn't have the need to know how to treat people with disabilities and in recreational settings we don’t get to meet people with disabilities, and so we don’t get to know people with disabilities. When you don’t meet people with disabilities within the community, it’s very easy to create stigmas and prejudices.
"The more people with disabilities are part of the community, in a structural and matter-of-fact way, from the day they are born, then the community will also get to know them, and this way it will be beneficial for the community as well. We need to become a better and more inclusive society."
This article was translated from Hebrew by Rose Angela.
