Auli Leiniö didn’t know her home was for sale – Procurement makes life unsteady for people with developmental disabilities
ELLI HARJU, text
SILJA VIITALA, photos
HENNA SILLANPÄÄ, translation
AULI LEINIÖ concentrates.
Leiniö is leaning towards the screen and keeps looking from the computer to the paper form in her hand.
Click, click, click.
If the paper contains a long passage in small hand-writing, Leiniö asks her assistant to dictate it out loud. When we arrive, Leiniö turns around in her chair and greets us. Her supervisor says that no one has the time to assist her during the interview in the meeting room. But no matter, Leiniö knows what she’s talking about.
LEINIÖ’S JOB is to transfer survey answers filled on paper at the foundation’s events into an electronic system.
“This is a great job. Great colleagues, great community,” she comments.
However, a couple of years ago Leiniö was quite worried about her capability to work.
The problems started after the city procured the company that provided Leiniö with personal assistants. A cheaper offer won and the assistants changed. Sometimes they were late, and once the assistant went to Leiniö’s home when they were supposed to assist her at the office. After that, it turned out that the assistant was not able to read Finnish even though her duty was to help Leiniö read the survey forms.
34-YEAR-OLD LEINIÖ has cerebral palsy and pervasive developmental disorder.
Leiniö lives in a group home in Tampere. The group home workers assist her with dressing, washing and cleaning up.
Leiniö has lived in the group home for six years. During that time, the housing services have been procured twice.
The first time around, Leiniö did not know about it. When the procurement of 2017 approached, she tried to prevent it by proposing a municipality initiative.
It was no use.
The service provider remained the same after the procurement, but the two-year process was torture for the inhabitants and their families.
“We feared that the service provider would change. We wondered what we would do then and whether things would change,” Leiniö recalls.
Before the second procurement, the inhabitants were asked to keep diary on their everyday life and a work shop was arranged for them to discuss the services. Leiniö thinks it wasn’t enough.
“I would have liked to interview the service providers and be there when they submit their tenders.”
“It’s really important to us that it’s our home and we can make a decisions regarding it.”
FINLAND RATIFIED the UN Convention and its Optional Protocol on the Rights of Persons with Disabilities in June 2016. After the ratification, the convention has been in force alongside the national legislation. The guiding principles of the convention include disabled people’s equality, autonomy and participation in society.
The convention was approved internationally in 2006. Sweden ratified it in 2008, Denmark in 2009 and Norway in 2013. Finland was late to the race, but has been praised for revising the legislation before ratifying the convention.
There has been criticism, too.
The UN reprimanded Finland on the implementation of disabled women’s and children’ rights and the disabled’s ability to work. It was also recommended to improve the autonomy of the disabled and people with mental illnesses.
LEINIÖ IS NOT the only one who’s everyday life is unsteady.
According to the disabled, their families and disability rights organisations, the rights of the disabled are implemented poorly. This was discovered in a survey conducted last autumn by VANE, the Advisory Board for the Rights of Persons with Disabilities. Slender livelihood, low employment rate and not being able to make decisions about one’s own life came up in the survey answers.
Competitive procurement was seen as a threat against the rights of the disabled.
By summer, Finland must provide the UN with the first report on how the rights of the disabled are implemented.
“Nothing has changed, absolutely nothing,” says Markku Virkamäki, managing director of the Service Foundation for People with an Intellectual Disability.
THE UN CONVENTION states that a disabled person has the equal right to choose their place of living and the equal right to access services. Disability rights organisations believe this is one of the most important aspects of the convention.
Services for the disabled have been procured in Finland since 2007 when the new Act on Public Contracts was approved. In practice, it meant that municipalities were supposed to start procuring the services for the disabled regarding housing, care and transport, in the case that the municipality did not provide them itself. The cheapest service provider has been providing care and housing for the disabled for the past ten years.
In March 2017, the investigative journalism programme MOT asked parliamentary parties whether they would be ready to exclude services for the disabled from the law. They all said ‘yes’. Hope sparked in disability rights organisations; they might be able to change the law. That same summer, they published the public initiative for removing the services for the disabled from the procurement act.
IT WAS EASY to support the initiative. It was called Ei myytävänä, “Not for sale”, and it was full of horrifying stories by disabled people. Homes and familiar taxi drivers had changed, homes had become inaccessible and medication was forgot.
The initiative received 72,000 signatures in a few months and it was delivered to the parliament in March this year.
Auli Leiniö believes and hopes that the law will be revised. It is important to her and other disabled people to remain in the familiar residence with the familiar staff. So, Leiniö also gathered signatures for the initiative.
“Even if they don’t pass the bill, the municipalities will realise that quality is more important than the price.”
IN ADDITION TO procurement, large housing units make individual living more difficult for the disabled.
There is a government resolution, the objective of which is that after 2020 no one will live in an institution long-term due to a disability. However, at the end of 2016, there were 920 clients living in institutions.
Tanja Salisma is concerned. She is the legal counsellor of Tukiliitto, support organisation for the developmentally disabled. Salisma says that institutions have been shut down, but there are not enough resources in non-institutional social care to replace them. She thinks the housing shortage has not been solved properly.
When there are no places to live, the disabled youth live with their parents for a long time.
Salisma even mentions neo-institutionalisation. She thinks it may be brought on by the pressure on municipalities to save money and the enthusiastic procurement.
THE APPLE OF DISCORD in revising the procurement act is the EU directive on procurement which the Finnish Act on Public Contracts is based on.
The decision-makers have implied that it is impossible to revise the act. For example, the Minister for Employment Jari Lindström sent a letter to the municipalities last October and reminded them to take quality into account when procuring services for the disabled. In the same letter, he wrote that the EU directive is binding and the Act on Public Contracts cannot be revised. The ministry believes that the problem is not in the act but in implementing it.
The disability rights organisations disagree. Virkamäki consulted people in the Brussels who did not see a problem in revising the legislation. The law does not compel municipalities to procure the services for the disabled even though that is what they are currently doing.
“The problem is that the procurement is carried out every couple of years. The law does not require it, but that’s what they are doing. It means that a person’s home is for sale every three years”, Henrik Gustafsson explains. He is the legal counsellor of The Finnish Association of People with Physical Disabilities.
The Ministry of Social Affairs and Health states that the ministry does not have research-based facts on whether procuring has saved any money for the municipalities.
For example, a report by the Ministry of Economic Affairs and Employment states that there has been an increase in acquiring services from companies and large companies are making a profit.
According to the last year report by Talouselämä magazine, the care business is dominated by three international companies Mehiläinen, Attendo and Esperi Care. The total turnover of the top twenty care companies has doubled.
Earlier, housing companies of disability rights organisations were among the largest service providers. In 2016, Mobility Finland, of the Finnish Association of People with Physical Disabilities, was fourth on the list and far from the top three. The Service Foundation for People with an Intellectual Disability ranked fourteenth.
THIS IS Leiniö’s third year working at the service foundation. She works four days per month. She takes a taxi to work and her assistant waits at the office.
Leiniö is the only one transferring the information from the paper forms to the computer.
“My work is important,” she says.
Leiniö started drawing a pension when she was in her twenties and the service foundation is her first paying job.
Only few people with developmental disabilities work so Leiniö is an exception. In the survey conducted by VANE, up to 75 percent of the respondents say that the equal right to work is implemented poorly or quite poorly.
“It’s not news to me. It’s still a common practice to offer disability pension as the only option to people with disabilities. They don’t give a thought to changing the environment so that disabled people could work”, says Anne Mäki, education and employment specialist of the Finnish Association of People with Physical Disabilities.
There are no separate statistics kept in Finland on disabled people’s employment. According to Eurostat statistics, in Finland, about 35 percent of working-age disabled people are outside the labour force. That is about 63,000 people.
IMPROVING THE LIVELIHOOD of disabled people has been difficult. A programme concerning the disabled was carried out from 2010 to 2015 in Finland and work-related regulations were revised. The final report of the programme states that most of the working life procedures were implemented, but they did not have the hoped benefits in improving livelihood.
The guarantee pension prescribed in 2011, proved to be the best tool in preventing poverty among the disabled. However, the report states that the increases in social and health service fees and medical expenses have watered down the benefits of the guarantee pension.
After drawing the report, the pension has been raised twice, first by 20 euros and then by 15 euros per month. People with developmental or physical disabilities suffer from poor livelihood. Both Marianna Ohtonen, executive manager of the Finnish Association on Intellectual and Developmental Disabilities and Mäki from the Finnish Association of People with Physical Disabilities say that the raises in the pension have not been sufficient.
“People with severe disabilities who cannot enter the work force are sentenced to life-long poverty. The low-income life is quite austere,” says Mäki.
AFTER RATIFYING the UN Convention on the Rights of Persons with Disabilities, Finland has been pressured to revise the legislation to take the disabled more into consideration. The social and health services reform, planned to be completed this spring, makes things even more difficult.
Disability rights organisations maintain that it is important for the disabled to choose their own service providers and be given a personal budget to fulfil their needs.
They have found flaws in the draft bills regarding requirements for physical accessibility and access to information.
“Especially in health services, it’s a matter of whether you can get up the stairs due to your disability or use care and treatment equipment. We know cases of people with severe physical disabilities who have been unable to access care equipment”, says Gustafsson.
Gustafsson also thinks that the bill proposals have not given enough attention to how the legislation concerning the Social Insurance Institution Kela and the bill on freedom of choice for clients go together. At the moment, Kela reimburses the journey by a taxi for the disabled only to the nearest place of treatment. Is the freedom of choice guaranteed?
THE SOCIAL AND HEALTH services reform bills determine who organises which services and where. The disabled people’s rights to social services are prescribed in two laws which will be integrated this year as the act on services for the disabled. The act is to be enforced in 2020.
The organisations hope for increased autonomy in both the bill on social and health services as well as the bill on services for the disabled.
According to the social and health services draft bill, the client has the right to choose the service from a provider outside their region only when they can decide upon it by themselves or with support from their family. Many organisations would like a service to be provided to support the decision-making.
“If a disabled person is not able to choose their own services and does not have anyone to help them with the process, they should not be excluded from the freedom of choice and forced to remain as a client of the region’s services. We are currently in the same situation,” says Tanja Salisma.
The organisations are also worried about increases in client fees. Until now, the special services for the severely disabled have mainly been free of charge.
The objective of the social and health services reform is to slow down the increasing expenses by three milliard euros by 2029. The savings goal for the bill on services for the disabled is about 60 million euros.
“The objective seems shocking. They are, after all, the most vulnerable group of people. This is not about extra services – it’s about services needed every day, throughout your life”, says Ohtonen.
THE TURBULENCE around the legislation concerning the disabled will continue in coming years. Finland made quick revisions to the legislation when the UN convention was ratified, but the ministry promised more comprehensive changes later.
The Ministry of Social Affairs and Health published Finland’s first plan of action regarding the convention in March. It is supposed to fix some defects reported in the VANE survey last autumn.
The disabled community is now waiting for the summer when Finland must submit its first country report to the UN committee, stating how Finland has succeeded in implementing the convention.
The Ministry of Foreign Affairs published a draft of the report at the end of March. The report displays clear flaws in, for example, accessibility in public transport and buildings. Many survey results and the statistics by the Non-Discrimination Ombudsman report that the disabled face a lot of discrimination. In addition, the disability rights organisations draw a parallel report to the UN. For this, Vammaisfoorumi, the forum for the disabled, and the Human Rights Centre compiled replies to the survey until the end of April.
The disability rights organisations regard the country report as important, although they know that the process will take time. Finland’s report is likely to be processed in three and a half years. Tea Hoffrén, VANE designer, still thinks that the remarks made by the UN committee in time will be significant in the future.
THINGS ARE looking up for Auli Leiniö.
She has been granted a personal assistant for her free-time for 30 hours per month. Leiniö has applied for work and the rights to have assistants herself and has contacted the city if the services have not functioned properly. This spring, after many problematic years, Leiniö was given a voucher for services by the city to get a personal assistant. She can now choose the company that provides her with assistants.
Leiniö says she gets good service because she knows how to ask for it. The disability rights organisations want the same services for those who are unable to demand them.
Lately, Leiniö has been to an Apulanta concert, the Metso library and had brunch by the Tammerkoski rapids. In the summer, she is planning to go see concerts by Neljä Ruusua and Klamydia.
Leiniö hopes that people’s attitudes would change. She thinks there should be even more discussion about how the disabled move, work and live.
“Everyone should be aware that the disabled are people just like everybody else.”