A Picture Of A Family Carer And A Child In A Wheelchair In A Bedroom

OPINION: Support to children with disabilities and their carers should start as early as possible

By Irene Bertana (EASPD) & Eric Bloemkolk  (SOFT Tulip)

 

As described by Fabien Toulmé in his graphic novel, when a child with a disability is born, the first days can be difficult for the parents, from many points of view. The autobiographic book tells of the shock, guilty feelings, and practical difficulties of the days after the author realises his daughter has down syndrome. The father-daughter bond takes more time than usual to grow in his case. For many parents, the stress of an unexpected situation can go along with unforeseen expenses, therapies, isolation, and frustration. They go through this and more for love, but wouldn’t it be better if they were accompanied and supported through these challenging times, which are fundamental for the development of their children and their own wellbeing?

Early Childhood Intervention (ECI) services are the tools to make this happen. They are designed to support families with young children who have at-risk situations, developmental delays, disabilities, behavioural or mental health needs. The support begins at birth and continues until the child’s early years. ECI programs include a range of family-centered services to improve child development and resilience.

ECI services target not only the child but especially the parents and other caregivers. They seek to strengthen family competencies and parenting skills to help children achieve their developmental potential. They help parents take care of their children in their natural environment: at home, school, daycare, or playground.

The first few years of a child’s life are a particularly sensitive period in the process of development of the body, brain, and communication. They lay the foundation for cognitive functioning; behavioral, social, and self-regulatory capacities; and physical health. EASPD – the European Association of Service Providers for persons with Disabilities – is strongly committed to developing quality ECI systems across Europe based on the individual needs of the children, families, and carers. ECI is a key component of deinstitutionalisation strategies, as a key element for the creation of a quality support system for persons with disabilities and to prevent institutionalisation. Insufficient support or placing young children in institutions has terrible consequences. It hampers the child’s development, causes, or worsens developmental delays, and risks an ongoing state of dependency on institutional care.

In addition to the reasons in the interest of the child and the family, there is also a major economic benefit. A Nobel Prize-winning study has shown that every dollar spent on high-quality, birth-to-five programs for disadvantaged children delivers a 13% per annum return on investment.

Measures aiming at the transition from institutional to community-based care, and the social inclusion of vulnerable children and families should thus include a strong emphasis on early childhood intervention. This must be paired with support measures for parents, such as socio-economic and psychological support. EASPD, in its technical support on the deinstitutionalisation process in Greece project implemented from 2019 to 2021, included ECI in its strategic objectives and priorities. For example, one of the Strategic objectives of the Greek Deinstitutionalisation Strategy is about the development of legislation and a programme aimed at regulating Early Childhood Intervention (ECI) programmes operating at national level.

To follow up with this, EASPD is now kicking off a new technical assistance project specifically on ECI in Greece. It will include:

  • An assessment of the existing situation through a report on ECI
  • Training for Greek service providers on family-based early childhood intervention that will be piloted in a number of ECI services in Greece;
  • A Roadmap and action plan for legislative and financial frameworks for family-centered ECI;
  • Awareness-raising activities for public authorities, services, medical staff, and families.

We hope this will give tools not only to the Greek context but also to the other countries that seek to put in place quality support systems for the parents of children with disabilities.

In the following months, the EU Member States will start the process of implementing the Child Guarantee, the first European Union instrument devoted to combating social exclusion in childhood. This will include the drafting of national action plans with reforms to break the intergenerational cycles of inequality. These plans, which will also target children with disabilities, should not only ensure access to education, early childhood education and care, health, nutrition, and housing to all children but also ensure the development of community and family-based ECI services. It is an opportunity that cannot be missed.

**DISCLAIMER: All opinions in this article reflect the views of the author, not of COFACE Families Europe**

About the author:

Irene Bertana is a Senior Policy Officer at EASPD  (European Association of Service providers for Persons with Disabilities) where she focuses on early intervention and inclusive education-related matters. Irene Bertana is also the facilitator of the Member Forum on Early Childhood Intervention (ECI), and coordinates a DG REFORM funded project that aims to assist the Greek Ministry of Labour and Social Affairs to create a legislative framework for ECI in Greece.

Eric Bloemkolk is the Director SOFT Tulip and an expert in building Early Childhood Intervention (ECI) systems with 16 years of experience in improving quality of care practices and de-institutionalisation policies in Central and Eastern Europe. Eric Bloemkolk is also a board member of the Dutch Coalition on Disabilities and Development.

 

 

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