CONFEDERATION OF NON-GOVERNMENTAL …



CONFEDERATION OF NON-GOVERNMENTAL ORGANISATIONS WORKING FOR THE BENEFIT OF CHILDREN AND ADULTS WITH AUTISM AND RELATED

PROBLEMS AND THEIR FAMILIES

Edited by:

Synapsis Foundation

3, Ondraszka Street

02-085 Warszawa

Authors: Anna Rajner, Maria Wroniszewska, Michał Wroniszewski

REPORT 2000

EVALUATION OF CARE SYSTEM FOR CHILDREN

AND ADULTS

WITH

AUTISM AND THEIR FAMILIES IN POLAND

Warsaw, March 2001

SUMMARY

The situation of children, youth and adults suffering from autism is dramatically negative – that is the opinion of parents, professionals and autistic societies. Lack of access to assistance in the form of therapy and education denies the opportunity for improvement and universal development. Consequently, these people are the object of severe discrimination and they are excluded from society. Appeals and efforts concerning this issue have been made for many years, but they have not yielded significant results. Regression is even observed in some areas (e.g. in healthcare).Taking this into consideration, the Confederation of NGO's who work for children and adults who suffer from autism has decided that it is necessary to prepare a report illustrating the situation concerning this issue in Poland on the grounds of objective data, in order to analyse the whole problem.

This document is a compilation of all of the data that we were able to gather concerning the condition of care for children and adults suffering from autism in the year 2000 in Poland. The data was collected by 25 organisations and obtained from 16 Regional Health Trusts and health service institutions designated by those trusts.

This document also contains the results of a survey, to which 190 families nation wide responded.

The final calculation of values, such as the percentage in which the needs of different scales are met, does not differ significantly from those contained in the introductory version of the report from November 2000. However, because of the significance of the issue and the importance of a strong base for fighting for the rights of children and adults who suffer from autism, we have decided to add information and once again analyse the collected data and opinions.

The aim of this study is to present real and precise information, including the sources of the information, to responsible authorities. The numerical data undoubtedly show that the rights of people suffering from autism are not being observed. The report also rebuts the popular argument (especially espoused by the Ministry of Health and Health Trusts) that the condition of care must be satisfactory if the parents of children suffering from autism are not complaining.

This report also takes the opportunity to present the problem to public opinion and media, neither of which possesses sufficient information concerning the real condition of children and adults suffering from autism in Poland.

This report should also serve as the foundation for honest discussions, not only about the opinions and conclusions that have been formulated, but primarily about the way in which these problems will be solved.

Contemporary methods of therapy and rehabilitation give people suffering from autism an opportunity to develop and educate themselves, but this is only the case if professional and intensive care can be given.

We must fight for the day when such care will be available in Poland.

GENERAL DATA

The problem of autism concerns about 10,000 children and young people, as well as a certain number of adults (the adult number oscillates around a couple of thousand, but the exact number is difficult to estimate because of weaknesses in the diagnostic process). Together with their families, which are also severely touched by the effects of the disease, the problem directly concerns over 50,000 individuals.

The following assistance can be offered on a nation wide basis at the moment:

- in specialised outpatient clinics offering continuous treatment for children with autism covered by social security – 440 people (8% of those who need help) not covered by social security – 270 people (5%)

- in consultation points not covered by social security – about 250 people (about 4.5%)

- in other outpatient clinics that do not specialise in autism covered by social security – 210 people (4%)

- in specialised outpatient clinics that offer sporadic treatment covered by social security – about 190 people (3.5%)

- in specialised day-care units for children with autism – 143 people (3%)

- in other day-care units that offer a wide range of services – about 30 people (0.5%)

- in educational institutions for children with autism – 62 people (1%)

- in other educational institutions – about 900-1100 people (about 17-21%)

- in units for adults with autism – 63 people (3%)

- in other units for disabled adults – about 140 people (about 8%)

Because of the fact that very often the same children visit a day-care unit and are under treatment in an outpatient clinic or consultation point at the same time, we are not able to learn the real, total number of children under specialised healthcare (detailed description in points 2.1.1. – 2.1.3).

Despite the low level of meeting patient needs, existing outpatient clinics and units are being limited by Health Trusts in terms of the quantity and quality of delivered care. Furthermore, they do not receive sufficient financial support from other sources. (in one of the NGO's that does not have a contract with Health Trust, government allowances covered only 17% of the therapy and rehabilitation costs). That is why at the moment in most of Poland, parents of children who suffer from autism or are suspected of autism have no possibility to access a doctor, a consultation in a specialised outpatient clinic, a care unit or treatment in a day-care unit. Adults have no chance for therapy, rehabilitation and activity outside their homes. In such cases, families are burdened with 24-hour care.

According to NGO's, the level of healthcare, education and social care is low. We contacted the majority of parents through institutions visited by their children, and none were satisfied with these services. Most often the best opinions were voiced only in respect to the educational system (see points 2.2 and 3.2).

The most difficult task was to collect data about social care, which is delivered to families with children suffering from autism. There is no access to data anywhere in the country, and data obtained from families is incomplete. On the other hand, we know that specialised care for children suffering from autism is delivered sporadically (in all of Warsaw it is provided to a total of 6 children - see point 4.1.)

The situation of NGO's who run or support institutions for children and other people with autism and initiate the formation of new organisations can be described as follows:

- constant deficit of working capital,

- irregular and unreliable financial backing from government sources (federal and local government),

- office space problems,

- lack of investment and renovation capital (this is partly caused by the Law on Public Finance).

Despite all of these problems, the new organisations are continuously trying to develop different forms of assistance for children and adults with autism and their families.

They run non-public healthcare institutions, as well as rehabilitation and education units (9 organisations), or support public units with Know How and money (8 organisations). Thirteen organisations have been trying to establish other units. Other forms of assistance, such as support groups for families, rehabilitation camps, integrative meetings, education courses for families, voluntary workers and professionals, and legal information have also been formed.

For many years, NGO's have tried to incline the public administration to undertake proper action aimed at improving the level and range of care for children with autism. They have also taken up action to change social opinion and attitudes towards families with the problem. Since 1996 they have been doing it together, in an organised way.

The effect of current reforms to the healthcare system were negatively evaluated by organisations and families in a survey (the effect of healthcare system reforms are rated twice as bad as the results of education system reforms ( see chapter 9.

The situation of many families, and primarily the situation of mothers of children with autism, has been made more complicated by the social security (pension) reform. The lack of institutions where a child could spend at least eight hours a day makes it practically impossible for a mother to take up any job, while the very low income criterion does not permit them to get continuous subsidies (see point 4.2.)

The territorial reform, in compliance with which the obligation to assist disabled people has been assigned to regions and their local governments, is evaluated differently by organisations (dependent upon local relations). On the other hand, all complain about the transfer of duties to local governments without assigning necessary financial support (see chapter 7).

Reforms introduced in 1998 and 1999 were not the only ones TO have an influence on the situation of children suffering from autism. Their situation was made worse especially by two legal changes: articles 118 and 74 of the Law on Public Finance and the change in the system of financing protected employers. On the other hand, there were no legal changes expected by interested groups of society: changes in the law about the total rehabilitation of children, a change in the decree of the Minister of Work and Social Policy concerning specialised care services and in the Law on Cooperation between the Public Administration and NGO's (see chapter 8).

The only way to act against the fatal situation of those afflicted with autism is to prepare and start to introduce, together with NGO's, a general Polish system of helping children and adults suffering from autism and their families.

All societies and organisations working to assist children and adults suffering from autism, and also working for children and human rights as well as public opinion, should consolidate their efforts to exact improvement of the described situation from authorities and responsible institutions.

EVALUATION OF THE EXECUTION OF RIGHTS OF CHILDREN AND ADULTS SUFFERING FROM AUTISM.

The condition of the system for assisting children and adults suffering from autism in Poland infringes on their constitutional rights, human rights and the Convention on Children’s Rights, which Poland has ratified.

These rights, mentioned in the above documents, guarantee that all children have access to healthcare, education and a convenient standard of life. In relation to children with autism, the majority of those laws are broken.

In article 68 of the Constitution, apart from the statement that “everyone has the right to protect their health” and that “Citizens ... should have equal access to healthcare assured by government...”, paragraph three contains the following statement: ”Government should assure children,... disabled people... special healthcare.”

International conventions ratified by Poland have priority over laws enacted by the Polish Parliament. The Convention on Children’s Rights is one of those conventions and it is therefore in force in Poland.

Paragraph 1 article 24 of the Convention on Children’s Rights states that “States-parties acknowledge the rights of children to the highest possible level of healthcare and facilitation of disease treatment and rehabilitation.”

In article 23 we can read that a disabled child has the right to special care and this help “has to assure that a disabled child has effective access to education, science, healthcare, rehabilitation, job education and recreational opportunities, realised in such a way, that the child achieves the highest possible level of integration with society and personal development, including cultural and spiritual development.”

How those rights are executed in Poland today is best illustrated by the above mentioned data concerning the small number of children and adults suffering from autism who actually benefit of different forms of healthcare, education and social care. No more than a few to twenty-some percent of people have effective access to the above mentioned forms of assistance (depending on the form of help).

Resolving this problem is an especially urgent issue. Further lack of progress on this matter can lead to the situation that families nation wide have to execute the rights of children suffering from autism on legal way.

Therefore, we think that the only effective solution would be the enactment and realisation of integral, interdepartmental government programs aimed at the development of the assistance system for autistic children, adults and their families.

Change with regard to autism is also required in light of Poland’s adaptation of the handicapped assistance program to EU standards. In 1996 the European Parliament enacted the Declaration of Rights of People with Autism.

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