community based services as a prevention of institutionalization: macedonian experiences and...

Republic Center for Support of Persons with Intellectual Disability - PORAKA

International conference "Innovative approaches to working with disabled children and their families:

Kyrgyzstan and international experience"

Vlado Krstovski, Program Assistant

1st March 2011, Bishkek, Kyrgyzstan

Community based services as a prevention of Community based services as a prevention of institutionalization:institutionalization:

Macedonian experiences and perspectives Macedonian experiences and perspectives


Main goals of PORAKA Provision of legal opportunities ensuring the

equal participation and inclusion of persons with intellectual disability in the civil society,

Provision of alternative community-based services, following the principles of equalization of opportunities for persons with intellectual disability and advancement of their human rights.

The Republic Center for Support of Persons with Intellectual Disability – PORAKA is a national, civil, non-governmental and non-profit organization representing the rights and interests of more than 20.000 persons with intellectual disability in Republic of Macedonia. PORAKA was established in 1963 and today unites 20 local branches all over Macedonia.


Principles of PORAKA

Inclusion of persons with intellectual disability in every aspect of life, Equalization of opportunities for persons with intellectual disability as equal citizens in the

community, Provision of family support – appropriate community-based services and support of the families with a

member with intellectual disability, Respect of self-determination and decision-making for persons with intellectual disability and their

families, Improvement of living conditions in the existing institutions, De-institutionalization of persons with intellectual disability and inclusion in alternative community-

based service, Raising public awareness.


Activities of PORAKA

Initiatives for improving of the policy regarding persons with intellectual disability on national level,

Coordination and methodological assistance of all local branches of PORAKA, Developing a network of alternative community-based services:

Resource center (counseling and information service), Social clubs and counseling services in all local organizations, Day Centers for adolescents and adults with intellectual disability, Initiatives for creation of services for independent living of persons with intellectual disability,

Communication and exchange of experiences on European and International level.


PORAKA is a member of:

EASPD – European Association of Services Providers for Persons with Disabilities,

Inclusion Europe – European Association of Societies of Persons with Intellectual Disability and their Families,

Inclusion International – International Association of Societies of Persons with Intellectual Disability and their Families,

NSIOM - National Council of Organizations of Persons with Disabilities of Macedonia.


Community based social services

Community based social services cover a large and diversified range of services which are intended to improve the standards of living of the population, especially of individuals and groups in vulnerable situations.

They are linked to national welfare schemes and are important tools for the implementation of public policies in the field of social protection, non-discrimination, the fight against poverty and exclusion.

They are not conditioned by the contribution of the users and enhance capacities of individuals for full inclusion and participation in society.

The States are responsible for ensuring the access of all citizens to social services.


Enabling system “A system of services oriented towards supporting people with disabilities to reach and maintain their optimal level of independence and social participation. This goal is achieved through ensuring them equal access to mainstream services existing at the community level (ordinary medical, social, education, and employment services), with individualised support services according to each one’s needs and expectations, and referral to specialised services when needed”.

The twin track approachThe twin track approach affirms the necessity of mainstreaming disability effectively in all development and policy making initiatives and, parallel to this, encourages all additional initiatives that address the more specific needs and qualities of disabled people, in order to achieve the people’s participation and inclusion. In an inclusive community, where the process of prevention of institutionalization is a key priority, all types of services that lead to participation of people with disabilities, and the full respect of their human rights are equally needed.


AN INCLUSIVE COMMUNITY

MAINSTREAM (REGULAR) SERVICESEducation: kindergarten, school, university, continuous learning

programsVocational training

Child careLong term care services

Health care and RehabilitationServices enhancing the access to employment (e.g. employment

bureaus)Social assistance services

Social housingPublic transportation

Leisure services Information (resource centers)

SUPPORT SERVICESPersonal assistance

Assistive devicesInterpreter services

Support teachers in regular schools

Supported employment Home support services

Accessible transportationPersonalised budgets

SPECIALISED SERVICESEarly intervention services

and individual needs assessment

Day Care CentresSpecial education

Respite careSheltered employmentSheltered housing etc.


Availability of support services for persons with disability

Support services should be available for each individual that is in need of these, regardless of his/her sex, ethnic origin, religion, age or disability.

The support services should be defined and provided according to the needs of the persons with disability, not according the needs of the system

The existence of wide range of support services is basic precondition for successful inclusion of persons with disability in the society and for realization of their basic human rights

The prevention of institutionalization as a process includes creation and functioning of a network of community – based services for support of persons with disability and their families


Provision of support services for persons with intellectual disability in Republic of Macedonia

Since 2000 – active involvement in the reform of de-institutionalization

Provision of conditions for prevention of institutionalization and creation of community-based support services

Creation of a initial network of 7 day center for adolescents and adults with intellectual disability, with support from the Open Society Institute Macedonia.

Social clubs and counseling services (resource centers) in the local branches of PORAKA

Since 2002 – Ministry of Labor and Social Policy has began with creation of day centers for children with intellectual disability (23 at the moment)


Day centers of PORAKA provide:

Needed support for the users on daily base Training for improvement of the independent living skills Educational programs Vocational-occupational programs Social, cultural and sports activities for persons with intellectual

disabilitySupport to the families

Basic principle of work in the day centers of PORAKA:focus on the abilities, improvement of potential and development of practical, cognitive and social skills of the users, through individual approach and program


PERSPECTIVES regarding the availability of services

Sustainability of the existing support services

Basic priority of PORAKA – to provide sustainability of the existing Day centers

NEED: Central and local government to realize their responsibilities (financial support) regarding the sustainability of the Day centers of PORAKA



Developing a network of different types of support services

Limited choice - lack of support services for persons with intellectual disability in Republic of Macedonia

NEED: Small group homes, personal assistance, services for independent living, respite centers, mobile teams, supported employment, foster care etc.

Available wide range of support services will enable persons with disability and their families to have a life with dignity



Reform of the social protection system - personal budgets

Law for social protection – no personal right (cash allowance) for persons with disability

NEED: Personal budget based on the assessment of abilities and needs

Persons with disability will gain choice, power and control of their own lives



Development of regulatory mechanisms in the service delivery process

Gate keeping procedures

Quality standards (PORAKA is using EQUASS as a guideline)

Accreditation and licensing

Procedures for monitoring and evaluation



Establishing partnership between the NGOs services providers and the government – equal treatment of all service providers

Actual legislation and policy are not allowing recognition of NGO service providers as equal partners

Support is provided on a limited scale, NGO support services are treated as projects

NEED: Partnerships between Government and NGO service providers that have the capacity to manage high quality service delivery process

Financial aspects – equal treatment of all service providers


PERSPECTIVES regarding the availability of services Decentralization - creation of Local Disability Action Plans

Law on local self-government - transfer of responsibilities on local level (education, health care and rehabilitation, housing, social protection and social services) – still ongoing reform “Activities of public interest of local importance” NEED: Creation of Local Disability Action Plans as instruments for improvement of the current situation in the service delivery process