Disability: Germany’s allowances to Ukraine’s institutions

Irish policy emphasises community and family care. What happens elsewhere?

November, 2016: Siobhan Powell, a profoundly disabled woman, has died aged 36. In November 2016, her parents - Johanne and Alan Powell - spoke to The Irish Times about Siobhan's need for full-time institutional care and their own wishes for the future. Video: Enda O'Dowd


In Ireland, the HSE’s stated goal in relation to people with disabilities is “to support service users in their homes, in day services or with respite provision”. The national policy was articulated in the 2011 report, Time to Move on from Congregated Settings and was summarised as supporting people to “live ordinary lives in ordinary places”. It envisaged that people living in congregated settings would move to dispersed housing.

How does this approach compare with that of our European neighbours?

Germany: an elaborate system of state allowances

The provision and cost of long-term care for the elderly and the disabled is big news in Germany, occupying the front and a full inside page of Wednesday’s Bild tabloid.

State care is financed by a statutory insurance contribution of 2.55 per cent of gross income, introduced in 1995. A reformed care system from January increases from three to five the levels of care payments, based on a medical assessment of a person’s needs.

Germans can decide themselves for residential or at-home care. The cost of residential care or professional at-home care is financed up to around €2,000 monthly for the highest level of care, or €900 for at-home family care. Full-time residential care is available automatically for anyone requiring the highest level of care.

An at-home (family) carer is entitled to take up to six weeks respite holidays a year with replacement care of up to €1,612 covered. The same amount again is available annually for cover if an at-home carer becomes ill.

The January 2017 care bill offers 10 days of paid leave annually to organise care for a family member and sees the state cover pension contribution gaps caused by at-home care.

Ageing (parent) carers can shift the balance of care to a professional home or into private “care flat shares”, where residents pool all care allowances and create economies of scale.

In addition to monthly allowances, a health insurer will either cover a range of care aids and loan larger items, such as hospital beds.

While Germany’s care debate is public and ongoing, handicapped people appear less visible than in Ireland. During the summer, handicapped activists locked themselves in a cage before parliament, protesting changes to welfare laws they fear will push more people out of the community and into full-time care.

– Derek Scally in Berlin

Ukraine: pressure to put children in institutions

The Soviet Union left a grim legacy for people living with disabilities in Ukraine. Twenty-five years after independence, people living here with disabilities are still struggling to overcome stigma and a lack of investment.

Last year, the office of the United Nations’ high commissioner for human rights (OHCHR) said Ukraine’s definition of disability was “medicalised, outdated and discriminatory”. Parents came under “high pressure” from professionals to put their child into institutions.

With parts of eastern Ukraine controlled by Russian-backed separatists amid fighting that has killed some 10,000 people since 2014, the OHCHR expressed concern over “the high level of abandonment of children with disabilities including in conflict areas”.

Against this bleak backdrop, Ukraine’s Paralympic team came third in this summer’s Rio games, ahead of vastly richer nations. The athletes’ success was attributed largely to a training programme called Invasport, for people with disabilities.

“Let’s be honest: it is easier for Ukrainian Paralympians to win a gold medal than to get to a shop or cinema, even in the capital,” said Ivanna Klympush-Tsintsadze, one of the country’s deputy prime ministers.

“That is something shameful which still, unfortunately, separates us from European societies.”

Daniel McLaughlin in Kiev

Italy: the disabled virtually disappear

In Italy, the burden of caring for the disabled falls heavily on the family. Pietro provides a typical case. His wife Rosella suffers from Amyotrophic Lateral Sclerosis. She uses a wheelchair and depends on carers at all times. Rosella receives a modest state pension of €400 per month, while her regional health services offer health workers for two to three hours, Monday to Friday.

Pietro, who continues to run his own business, is lucky in that he can afford to employ a full time, live-in carer. Otherwise, he acknowledges, their situation would be very difficult. Even if he wanted to move Rosella into institutional care, which he does not, he is not sure if he could find such a place.

Although 6.7 per cent of Italy’s population suffers from a serious disability, one out of four Italians claims to have no contact with disabled people, because – due to restricted mobility – they virtually disappear.

Half of autistic people and one third of Down syndrome sufferers attend an institution daily, and parents of the severely disabled can be involved in 17 hours per day of caring.

The biggest problem, however, according to a research body Censis, comes after school; 88 per cent of parents of disabled adults foresee no autonomous future for their children.

– Paddy Agnew in Rome

Spain: the state plays a small part in caring

In Spain, the state plays a relatively small part in caring for those with disabilities. A 2015 report by the health ministry found that only 11 per cent of those requiring help received support exclusively from the state.

Most others relied on charities and relatives, or a combination of both. In Spain, the family remains a significant social safety net, particularly in the area of disabilities. Of Spain’s 4 million people with disabilities, 3.8 million live at home and only 270,000 live in special care homes.

Amás, a foundation which offers support to people with disabilities, warns that the burden is increasing on families due to cuts in social spending.

But the disabled are highly visible in Spain and a 2006 dependency law formalised many of their needs and requirements.

– Guy Hedgecoe in Madrid

France: spending higher than OECD average

French policy towards the handicapped is based on a February 2005 law which in theory guarantees “access to everything for everyone”. It includes a “strategy of compensation” from the social security system.

A national conference on the handicapped in 2014 recommended more professional training for the handicapped, and increased assistance for those who remain at home.

Some 5.5 million French people define themselves as handicapped. In 2008, 1.8 per cent of French GDP was spent on longterm care for dependent people, higher than the OECD average of 1.5 per cent, the OECD reports. More than 70 per cent was for care in institutions, including hospitals and longterm residential care.

A 2005 law established a network of “Maisons Départmentales des Personnes Handicapées” for everyone seeking assistance on behalf of a disabled person. A commission establishes a plan for each individual, in which the level of assistance and compensation vary according to the degree of the handicap. The longest waiting lists are in Paris.

– Lara Marlowe in Paris

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