Delivering the message of people with intellectual disabilities to the public since 1963


20th Session of the UN Committee on the Rights of Persons with DisabilitiesReview of the Initial Report from Republic of Macedonia

The UN Committee on the Rights of Persons with Disabilities opened its 20th Session on 27.8.2018 in Geneva, during which it reviewed the reports from Algeria, Bulgaria, Malta, Philippines, Poland, South Africa and Republic of Macedonia.

The UN Committee on the Rights of Persons with Disabilities
The Committee on the Rights of persons with Disabilities is a body of 18 independent experts which monitors implementation of the Convention on the Rights of Persons with Disabilities. The members of the Committee serve in their individual capacity, not as government representatives. They are elected from a list of persons nominated by the States at the Conference of the State Parties for a four year term with a possibility of being re-elected once (cf. Article 34 of the Convention).

How does the Committee on the Rights of Persons with Disabilities work?
All States parties have to submit regular reports to the Committee on how the rights enshrined in the Convention are being implemented. States must report initially within two years of ratifying the Convention and, thereafter, every four years. The Committee examines each report and makes suggestions and general recommendations on the report. It forwards these recommendations, in the form of concluding observations, to the State Party concerned.
The Committee meets in Geneva and holds public sessions. During these sessions, The Committee examines the reports of the State Parties concerned, holds an interactive dialogue with the State delegations and makes recommendations on the steps which should be taken to improve CRPD implementation.

20th session of the UN Committee on the Rights of Persons with Disabilities
Тhe Committee on the Rights of Persons with Disabilities, on August 27th in Geneva, began the 20th session, in which it reviewed Algeria, Bulgaria, Malta, Philippines, Poland, South Africa and Republic of Macedonia. It will also initiate the second cycle of review under the simplified reporting procedure by adopting list of issues prior to reporting on Austria, Azerbaijan, Germany, Mongolia and Sweden; as well as adopting list of issues on the initial report of Iraq.
The Committee also plans to make advances with the draft General Comment no. 7 on Articles 4.3 and 33.3. In this sense, taking into account that the Day of General Discussion was held on June 11th in New York during the Civil Society Forum to the Conference of States Parties, the Committee hosted two public events to give civil society the opportunity to raise comments on the draft general comment no. 7. On August 31st, the CRPD Committee hosted a celebration of the 10th years of activities of the Committee. Key partners and stay holders were present to join the celebration and share their insights on the past decade and on the challenges laying ahead.
On September 10th and 11th, the CRPD Committee reviewed the Initial report from Macedonia relating to the measures undertaken for implementing the provisions enshrined in the UN Convention on the Rights of persons with Disabilities.
The Macedonian delegation was consisted from representatives from the Ministry of Labour and Social Policy, the Ministry of Health, the Ministry of Foreign Affairs, the Ministry of Education and Science, and the Permanent Mission of Macedonia to the United Nations Office in Geneva.
Delegation from the civil sector was also present during the review of the Macedonian report, consisted of representatives who prepared shadow report supported by EDF relating to the implementation of the provisions consisted in the UN CRPD by the state institutions.
Theresia Degener, president of the CRPD Committee, led the session, and Mwesigwa Martin Babu was the Committee Rapporteur for Macedonia. During the two days when the Macedonian report was reviewed, the State delegation had the possibility to give the opening statement regarding the situation with persons with disabilities, and then to present the initial report. The Committee members had the opportunity to ask questions relating the report and the implementation of the UN CRPD.
The representatives from the civil sector in Macedonia, also had the possibility to give their own statements about the overall situation of persons with disabilities in our country, as well as about the implementation of the UN CRPD.
Vlado Krstovski from the Republic Centre for Support of persons with Intellectual Disability – PORAKA took part at the session, who on behalf of the National Council of disability organizations in Macedonia coordinated the activities of the informal coalition for preparation of the shadow report. We forward his Statement to the UN Committee on the Rights of Persons with Disabilities.
I would like to express my gratitude to the European Disability Forum and the International Disability Alliance for the support they have provided for our participation at this session.
Since the ratification of the CRPD in 2011, the state didn’t undertake comprehensive review and didn’t develop strategic framework for harmonisation of the existing and draft legislation and relevant strategies with the obligations under the CRPD. The laws and strategies that have been indicated in the state’s initial report and reply to the list of issues, some more than the other, are taking into account the values of the CRPD. However, this can’t be understood as planned meaningful alignment of the national legislation and policy framework with the CRPD. The state is marginally paying attention on the CRPD provisions while developing the legislation framework, and until now there were no real analysis or plan done by the state in order to harmonise the legislation and policies with the Convention.

The expiring National Strategy for Equalization of the Rights of Persons with Disabilities (Revised) 2010-2018 has taken into account some of the CRPD provisions, but not adequately implemented. Lack of cross-sectorial cooperation, financial implications, lack of political will are some of the reasons for this.
This Strategy is expiring in couple of months and therefore, we urge the state to develop new comprehensive policy framework – a strategy that must be based on the UNCRPD provisions, should address all key issues and be developed in a participatory manner where OPDs will have a leading role.
The term “disability” is not defined in the Constitution of the Republic of Macedonia. Article 35 of the Constitution only determines that persons with disabilities will be provided with special protection and conditions for inclusion in the society. The particular term used in this article is “invalidity”. Different laws are defining disability in different manners, according to the specific area covered (social protection, employment, educations etc.) There is a variety and mixture of outdated terms in the legislation that are not in line with the CRPD. The terminology “invalid” is dominantly used within the legislation and services, but improvement has been made by the DPOs for wider public use of “disability”. Although there were some attempts, discussions and round tables about the terminology, the state failed to harmonise the terminology and the definition of disability with the CRPD.
We recommend the state to undertake serious measures to overcome this situation, in close cooperation with the persons with disabilities and their organisations and to ensure single definition of persons with disabilities, based on the human rights approach to disability, which is to be applied in all sectors and to all groups of citizens with disabilities.
There is a substantial lack of data relating disability in every sector or area, due to the non-consistent definition and terminology of disability. The data collection performed by State Statistics Institute is mainly addressing children and adults with disabilities as users of public (health and education) services and social protection allowances, leaving a substantial “dark” number of people as invisible citizens in the state’s policies.
Therefore, we urge the state to develop consistent approaches to the collection of data aggregated by the type of disability and various demographic data. A good possibility is the preparation of the planned Census for 2020, where the State should work closely with OPDs and clearly define the questions.
We acknowledge the good intention of the Ministry of Labour and Social Policy relating the activities for awareness raising (performed in the last year), mentioned in the State reply to the List of Issues. However, these activities are project based and dependant on donors (such as the indicated example with UNICEF) and there is no national targeted strategy to raise awareness of people with disability in all their diversity. A recent study shows that the medical model of perceiving disability prevails in the country (30% of citizens believe that the barriers should be removed, 44% state that citizens with disabilities need medical care and services, while 25% think that citizens with disabilities should be included in the society as much as possible) and indicates that only half of the citizens with disability know about CRPD (since there were no measures to disseminate and facilitate understanding of the Convention in accessible formats, including plain language, Braille, Easy Read, sign language and other alternate modes of communication across the country). The last example of obstruction of the opening of group home for children with disability in the village Timjanik, (where the citizens didn’t want children with disabilities to be accommodated in their surrounding), only confirms the low awareness in the country. Also, there is a lack of consultation and involvement of the OPDs relating the awareness raising activities.
We recommend the state to develop strategy across all governmental sectors in order to address awareness rising relating the rights of people with disability in all their diversity. The State should support OPDs to increase the capacities of person with disabilities in order to be more aware about their right and CRPD. The State should develop comprehensive campaigns about the CRPD and combat prejudice in close cooperation with the OPDs
Children with disabilities are not given special attention, as elaborated in our coalition submission to the Committee. Unfortunately, the same goes for the women with disabilities. There are crucial issues in regard to accessibility, education and employment, health, habitation and rehabilitation and so on. The report submitted by our coalition indicates many of the burning issues, and., I will focus on the right of independent living and inclusion in the community and the right on adequate standard of living.
Many persons with disabilities and their families are living in poverty. The National strategy for reduction of poverty and social exclusion in the Republic of Macedonia (revised 2010-2020) has more than 100 objectives and direct measures directed to children, persons with disabilities, old people and other vulnerable groups of citizens. But, when it comes to implementation, not much is done. Lack of implementation, coordination and monitoring mechanisms sometimes lack of political will and certainly lack of funding has led to insufficient results.
The social protection measures and mechanisms to support persons with disabilities, mentioned in the State’s reply to the List of Issues, are not sufficient to ensure adequate standard of living of persons with disabilities and their families. The social protection system is not ensuring the needed minimum income and coverage of the disability-related costs. It is fragmented by the material status of the person and/or the family, type and level of impairment, age etc. Also, it imposes additional administrative and financial burden on persons with disabilities. There are significant differences in the allowances and services for different groups of persons with disabilities, depending on the age or on the reasons for becoming persons with disability. Though initiated by the DPOs, the Government didn’t respond to the issue of lower amount of financial support, given by the Law on Social Protection, which is provided to the biological families of persons with disabilities compared to the foster carers.
As the state is working on the completely new Law on Social Protection (to be finalised by the end of 2018 and intended to largely improve the standard of living for all vulnerable groups), we recommend the State to address at this point all key issues for persons with disabilities in order to ensure equal access to social support, social protection and allowances. Also, to guarantee social protection in all its forms to children and persons with disabilities, irrespective of the type of disability, gender, age, social background, ethnicity status, and to reform the allowances in order to provide targeted, personalised and satisfying social protection. Moreover, to provide material support to the biological families – on equal basis with the foster carers. To achieve this, we recommend the State to include the organisations of persons with disabilities in the preparation of the draft Law on Social Protection.
As stated previously, the National Strategy on Equal Rights of Persons with Disabilities (Revised) 2010 – 2018 was not implemented in a satisfactory manner, especially in the field of support services that would enable independent living of persons with disabilities. Besides the evident lack of support services in the community, the existing services are not always following the human rights approach. The real personalised services, such as personal assistance or home help, are still missing or are in its initial pilot phase. The independent living of persons with disabilities mainly depends on the informal support networks.
The existing services (foster care, day centres and group homes) should be upgraded in order to deliver person centred care and support and their work should be more community oriented. These services are being considered as final solution, instead of intermediary structures and should be transformed into real independent living. Also it is important that there are no quality standards or monitoring and evaluation mechanisms to measure the results of foster care, day centres and group homes.
The expiring National Strategy for Deinstitutionalization in Social Sector 2010-2018 didn’t deliver the expected outcomes in terms of transition from institutionalised to community-based care. Less than 120 persons (children and adults, mainly with intellectual disabilities) got the possibility to live in the community (in foster care and in group homes). Currently there are 3 residential institutions for persons with disabilities with total number of 320 residents.
Deinstitutionalisation was widely understood as solely resettlement of persons with disabilities in small group homes. So far, no independent living arrangements have been made and no personalised services were developed. A recent study on deinstitutionalisation has emphasised the fact that the state is still spending double budget for institutions compared to community-based services.
We acknowledge that deinstitutionalisation and development of community services are high priority of the current Government. The new National Strategy on Deinstitutionalisation 2018 – 2017 is formulating the priorities into ambitious action plan, but there is a big concern about the implementation of the new strategy, as the previous one didn’t fulfil its goals. The same applies to the transformation plans that are being developed for each residential institution.
Besides the pledge for complete deinstitutionalisation, the Government and MoLSP should secure and allocate the budget needed for the transformation and creation of the services in the community. At the same time, measures are lacking for prevention of institutionalisation, because with the determined moratoria of new admissions in the institutions, and with the lack of housing options and support services in the community, the persons with disabilities and their families are under tremendous pressure.
The State should take into account the lack of personalised services and to develop a wide range of support services based on person centred approach. The State should allocate sufficient resources to ensure that services in the community are available, accessible, affordable, and acceptable and accommodating so that persons with disabilities may exercise their right to live independently and be included in communities.
Pluralisation and decentralisation of the service delivery process is needed. Local self-governments should be encouraged to organise support services. OPDs, civil society organisations and private providers should be recognised as partners and supported by the State.
In order to secure proper implementation, the State should allocate specific budget for deinstitutionalisation. The State should establish mechanisms for implementation of the new National Strategy on Deinstitutionalisation 2018 – 2027. All activities, including the new support services, should be closely monitored and evaluated by independent mechanism were OPDS will have an important role.
We acknowledge the efforts of the current government to establish the necessary mechanism for implementation of the CRPD, under Article 33. The newly established National Coordination Body for Implementation of the UN Convention on the Rights of Persons with Disabilities should be given all needed resources to fully perform its mandate as a coordinative mechanism for the implementation of the Convention. A positive momentum is that out of 15 members, 2 are representatives of OPDs.
Persons with disabilities and their representative organisations must be involved in the monitoring mechanism that will be established within the Ombudsman office. The monitoring mechanism should be completely independent and to be given all needed resources in order to effectively achieve its role in line with CRPD provisions.