NIK about Pro-Life Programme

Primary beneficiaries of the Programme were to be women with complicated pregnancies and families with newborn babies, who had severe and irreversible impairments or incurable life-threatening diseases diagnosed in their prenatal period or at birth. The NIK audit revealed, however, that in the audited period (from January 2017 to June 2020) the key forms of support addressed to this special group of people, could be used to a small extent.

Medical certificate issued by an eligible physician is the primary condition under which this kind of care is provided. No institution, though, had complete data on the number of persons authorised to receive help or their place of residence. By the audit end date, instead of planned 30, there were only six specialised facilities providing coordinated newborn and pediatric care to children with the most severe diseases diagnosed in the prenatal period or at birth. In four of 16 provinces, palliative and hospice care services were not provided at all.

The Programme authors assumed that the key link of support for this group of beneficiaries would be professional family assistants – assistance coordinators. Changes were planned to increase the number of assistants, extend the scope of their activity and popularise their services. That was not the case, though, because the financing of assistants’ remuneration plummeted. In 2017-2020, the Ministry of Family provided to local government units over PLN 100 million less than planned in the Programme for that purpose.

On the other hand, the NIK audit confirmed very little interest in support provided by the assistants. One of the reasons could be the fact that their assistance to families having a certificate (which confirmed that their children had severe and irreversible impairments or incurable life-threatening diseases diagnosed in the prenatal period or at birth) in no way differed from support for families with disabled children who lacked that certificate.

Despite the Programme provisions, by the end of the NIK audit, the Chancellery of the Prime Minister did not launch the database or the portal with information on forms of support for disabled persons, their families and carers, which NIK criticised the most. After all, that was why there was so little interest in some forms of assistance. Only an electronic information booklet explaining rights under the Support Act was published.

The Ministry of Education failed to establish the National Coordination and Rehabilitation Centre saying that the Programme provisions go beyond the Education Act which did not take account of that separate body. According to NIK, it is not necessary to create a new facility in this case because the supervision and coordination of activities of district coordination, rehabilitation and care facilities could be taken over e.g. by a designated section or person from the Ministry.

In terms of the so-called health provision, only one objective of the Pro-Life Programme was fully achieved. Only in 2018, 13 women’s breast milk banks were established. In 2020, over 4 thousand children used them, whereas in 2017 it was only 46. The access to prenatal diagnostics and therapy was mostly provided to pregnant women with higher risk of congenital diseases, although the examinations were available even before the Pro-Life Programme was launched.

According to NIK, the main reason why the Programme did not work in line with its assumptions, was that subsequent ministers of family and social policy, ministers of health and governors failed to coordinate and monitor the Programme or did it improperly. As a result, reports on the Programme implementation for 2017-2019 were incomplete and unreliable.

Since October 2020, the Pro-Life Programme has had even bigger role to fulfil.  The Constitutional Tribunal resolved that abortion due to severe impairment of the foetus or its incurable disease is against the Constitution. According to the Ministry of Health these are the most frequent causes of abortion (95-98% cases).

Programme assumptions

The Pro-Life Programme was assumed to be the most innovative and comprehensive aid project for disabled persons and their carers to date. It is particularly addressed to women with complicated pregnancies and newborn babies with the most severe diseases. Support for this special group will cover: prenatal diagnostics, ambulatory specialist care and hospital treatment, as well as hospice and palliative care and help for disabled persons’ carers, psychological support, medical rehabilitation, provision of medical products and family assistant’s aid. It also assumes satisfying housing needs.

The Programme comprises 31 different types of activities split in six priorities. The NIK audit revealed, though, that the scope of planned forms of assistance was limited or there was little interest in using them. One of the reasons was that some people did not know they could apply for this kind of help. In some cases the aid was not properly allocated. By the end of the NIK audit, neither the database nor the information portal on forms of support for disabled persons were launched (e.g. to meet their housing needs). Also, support for disabled persons’ carers was not provided  in line with the Programme principles.

NIK is of the opinion that nearly all forms of assistance were planned without proper identification of needs of the groups that were supposed to use them. Besides, a big part of costs related to family support was transferred to local governments that could not bear the weight.

The value of planned aid as part of the Pro-Life Programme for 2017-2021 reached nearly PLN 3.1 billion. By the end of 2019, as much as 86% of the planned amount was spent but it was related to four-times-higher-than-planned expenditures for coordinated care of women with complicated pregnancies.

The Pro-Life Programme also includes one-off payments of PLN 4 thousand after a child is born alive but has severe and irreversible impairment or an incurable life-threatening disease. This, however, needs to be confirmed by an eligible physician in a special certificate. Out of PLN 208 million earmarked for that purpose only 32% was paid in 2017–2020.

Care of women with complicated pregnancies and their families

The Pro-Life Programme assumes increasing availability of diagnostics and prenatal therapy for pregnant women with higher risk of the child’s congenital defects. The NIK audit showed that this availability was provided to a large extent. It should be remembered, though, that the prenatal diagnostics programme was implemented even before the Pro-Life Act was passed and that the access to those examinations varied depending on the region.

In 2017-2020 (1^st half), prenatal diagnostics and therapy were offered in all provinces but in some of them – not in many medical facilities. To sign a contract for those services, one had to meet high requirements, e.g. ensure medical care of different specialists.

In the audited period, about 426 thousand women in total took benefit of the prenatal diagnostics programme. At that time, despite noticeable drop in 2019, the percentage of women covered by the prenatal diagnostics programme against the total number of pregnant women remained unchanged and reached 20%.

As a result of legal solutions implemented with the Pro-Life Programme, the number of medical facilities offering specialist care and women covered by that care increased. However, until the middle of 2020, coordinated care of women with complicated pregnancies was not provided in six of 16 provinces. Reasons included financial, organisational and technical barriers.

In 2018, perinatal palliative care was used by 289 patients/ families, in 2019 it was 476 and in the first half of 2020 it was 193, of which about 80% of services was provided by one facility operating in Mazowieckie Province.

As part of this project, support of qualified psychologists was offered to women who in the course of their pregnancy learned about the child’s incurable lethal defect directly or indirectly leading to the child’s death. In the audited period, this type of support was granted to a limited extent. In 2018, 50 women used it, in 2019 it was 310 women and in the first half of 2020 psychologists provided their aid to 203 women in need.

Care of children with the most severe disabilities

The Pro-Life Programme assumed organising 30 specialised centres for coordinated childcare. The facilities were to provide care to children with the most severe disabilities and women with complicated pregnancies, Instead, the number of those facilities went down from eight in 2018 to six in the first half of 2020.

Year after year, there were more and more children covered by coordinated care. But still, in the audited period only about 1700 used it (in 2017 it was 265 children, in 2018 – 521, in 2019 – 539, and in the first half of 2020 – 422). Some modifications were proposed in the Ministry of Health to boost availability and efficiency of those services. That, however, did not end in any solutions.

Also, coordinated care addressed to children with pervasive developmental disorder was provided on a small scale. As of mid-2020, they were available only in six facilities located in four provinces, which complied with high requirements defined by the National Health Fund.

The Pro-Life Programme also assumed creating coordination, rehabilitation and care facilities, which provided mainly early childhood development support. Initially as many as 380 district facilities of that type were planned (one in each district) but by the end of the NIK audit they were erected only in 307 districts.

Neither the Ministry of Education nor the Ministry of Health defined precise principles of qualifying children for the Programme, nor did they specify the catalogue of diseases qualifying them for aid in those facilities. By assumption, the fully-fledged support within the Programme was to cover about 20% of children with the most severe diseases. As there were no specific guidelines, facility heads applied their own criteria, and thus a big group of children with various diseases was comprised by the Programme (over 40% of them were not covered by the early childhood development support). As a result, the assistance was significantly dispersed. It did not exceed 1.5 hours per month on average, although it was assumed that one child would be entitled even to 20 hours.

Family assistants

The planned changes were to be based on expanding the role of family assistants, also by increasing their number. They were supposed to have special rights and obligations, especially with regard to women with high-risk pregnancies and families where children with the most severe disabilities are to be born. None of the assumed objectives was met, though.

The reason was a significant drop in subsidising remuneration within only three years – by nearly 30% in case of employment agreements and by nearly 50% in case of contracts of mandate. In 2020, only the one-off covid allowance was paid, as a result of which the assistants’ remuneration went down by as much as 93%. That was influenced by the level of funds allocated to local government units in 2017-2020, which differed significantly from the financial plan of the Pro-Life Programme. Instead of PLN 280 million, communes received from the Ministry of Family less than PLN 174.5 million for that purpose, which is over PLN 100 million less.

It was also a big problem that in three of four cases, the communes could apply for subsidies in the second half of the year at the earliest. It means that until then they paid the assistants’ remuneration from their own pocket, without any guarantee that the Ministry would repay the funds.

The lack of smooth financing could make social welfare centres stop hiring assistants and destabilise their personnel. The NIK audit indicated high employee turnover in those positions and reluctance to work among the assistants. Besides, that situation did not help build lasting relations between the assistant and the family which is extraordinarily important in this particularly difficult situation.

The NIK auditors established that 198 communes Poland-wide (about 8%) did not hire a single family assistant. In about 66% of communes only one assistant was employed. NIK stands in a position that in such cases the quality of help provided by family assistants is questionable.

The Ministry of Family did not make sure family assistants were properly prepared to perform their new tasks. Only 15% of social workers at the maximum – including family assistants - underwent relevant training programmes.

Although family assistants had a vital role to play, the Ministry did not gather even basic data about the scale of aid provided by the assistants or the demand for that aid. The NIK audit also revealed little interest in support provided by family assistants.

Providing provisional and permanent living conditions

A very important part of the Pro-Life Programme was to make sure disabled persons live (whether on a permanent or temporary basis) in friendly conditions, tailored to their needs. The Programme was also to ensure that those persons’ carers could take up work and have their essential rest guaranteed. Little effects were achieved, though.

NIK positively evaluates development of the network of special needs centres (SNCs). Nevertheless, things would be even better if the amount planned in the Programme (nearly PLN 200 million) would be actually spent on this task. The audit shows that less than PLN 91 million was used.

Thanks to the development of the SNC network, the number of people waiting to be placed in those facilities went down in the audited period by about 500 (to 1242 persons at the end of 2019) and the number of districts with not a single special needs centre dropped by 16 (to 26).

The network of homes for mothers with minor children and pregnant women was not developed on a large scale. It was supposed to consist of 40 facilities. It means that in four years 18 others were to be opened. Only seven were founded, though. In line with the Pro-Life Programme assumptions, at least two homes of this kind would operate in each province. However, at the end of 2020, there were none in five provinces and only one in three of them. According to NIK, too low financing by the Minister of Family (50% only) was the primary cause of the problem. More than PLN 11.5 million was earmarked for that purpose and less than 12% was used. In 2020, the Ministry proposed financing at 80%. Still, the demand reported by local government units exceeded the amount planned for this year.

There were no persons willing to use the newly created sheltered housing for persons with specific disabilities. In the audited period, only 53 persons used 514 places. However, the Minister of Family did not identify causes of this situation and it was not monitored in following years. In four of six audited provinces those places were used to a small extent, although unauthorised persons were sent there.

The Pro-Life Programme also assumes care of pregnant students. However, in the audited period only 25% of districts all over Poland signed an agreement with the Ministry of Education, under which separate rooms in dormitories were prepared for those women. There was little interest in such aid, though. As many as 219 places were vacant and only 17 students were willing to use them.

Recommendations 

To the Chancellery of the President of the Council of Ministers to:

• establish the database and the portal with information on available forms of support for disabled persons, their families and carers;
• amend provisions on coordinating comprehensive support provided to persons covered by the Programme.

 To the Minister of Family and Social Policy as the Programme coordinator to:

• properly perform all tasks to ensure fully-fledged support to groups covered by the Programme and to initiate changes to eliminate difficulties in performing those tasks;
• gather data (e.g. via a central statistical application) on the number of persons covered by the Programme and the place where they use it;
• grant subsidies within deadlines enabling local government units to perform their tasks.

 To the Minister of Health to:

• verify the conditions of providing coordinated care of pregnant women, children and persons with pervasive developmental disorder so that more facilities can provide healthcare services of this type.

To the President of the National Health Fund to:

• make sure all provinces have access to medical services included in the Programme or have this access expanded, especially as regards perinatal palliative care and prenatal examinations.

To the Minister of Education and Science to:

• make sure following editions of the Programme and the ordinance on coordination, rehabilitation and care facilities precisely define conditions to be met to receive support and use the International Classification of Diseases (ICD-10) in this respect;
• make sure subsidies are granted in the following editions of the Programme for the purchase of therapeutic aids and diagnostic tools to facilities providing early childhood development support within the Pro-Life Programme.