What do parents of children with developmental disabilities actually need? Results from a four-country EU survey

As part of an international project M-POWER, a team from Bulgaria, Italy, the Netherlands, and Romania surveyed parents of children with developmental disabilities to understand which early childhood development services actually work — and where the system falls short. The goal wasn’t just to collect opinions, but to build an objective picture that could guide real decisions: what to keep, and what needs urgent change.

174 parents took part in the survey, fairly evenly split across the four countries (24–27% per country). The questionnaire was translated into Dutch, Italian, Romanian, and Bulgarian, and was developed through a 13-step process, from defining the purpose and themes to piloting and collecting feedback from all partner countries.

Who responded

• 89% of respondents were mothers — typical for this type of research, and worth keeping in mind when interpreting the results
• Average caregiver age: 42 years; average child age: 8 years
• 86% of children were currently receiving or had previously received early intervention services
• The average age of service onset was 18 months, but with huge variability (from birth to age 6) — pointing to inconsistent early identification
• The most common service format was center-based (50%), followed by school/kindergarten (21%) and home-based visits (14%)

What’s working well

The study identified several genuine strengths shared across all four countries:

• Professional competence — 69% of parents rated specialists’ skill and communication highly
• Cooperation with specialists — 68% reported good collaboration
• Feeling part of the child’s support team — 58% of parents felt like a genuine part of the team
• Information at enrollment — 60% received clear information when starting a service
• Child development (communication, motor, social skills) — 57% of parents reported meaningful progress
• Affordability — 54% found services financially accessible

Where the major gaps are

At the same time, the study clearly revealed systemic weak points common to all four countries:

1. Support during transitions — the biggest gap

• 55% of parents received no support at all during the transition from hospital to home
• 44% — during the transition from home to an ECD center
• 38% — during the transition from the ECD center to educational services

This is the weakest result in the entire study, and it’s remarkably consistent across all four countries.

2. Emotional support and parental mental health

• 44% of parents could not access support for themselves (counselling, therapy, help with emotional coping) when they needed it
• 39% said services did nothing at all to help them cope with stress
• The weakest results were in the Netherlands and Italy

3. Navigating resources and support networks

• 32% received no support in accessing resources and services for their family
• 23% were unable to establish connections with other parents or support groups

4. A family-centered approach — inconsistent

Ratings on whether programs focused on the whole family were split almost evenly between “not at all,” “to a small extent,” and “to a large extent” — showing a clear lack of a consistent standard.

Differences between countries

• Bulgaria and Romania consistently scored stronger on referrals, timeliness, and enrollment information — often through informal networks (other parents, NGOs like Karin Dom in Bulgaria) and clearer clinical pathways in Romania
• Italy offers broad access to speech therapy, physiotherapy, and psychomotricity, but relies heavily on the private sector and parent-led navigation through bureaucracy, especially once children age out of public thresholds
• The Netherlands has a well-developed system of consultation offices, GPs, and municipal support (WMO/PGB), but also shows the weakest results for parental emotional support and the highest reports of delayed service activation

The bottom line

Across all four countries, the early intervention system performs well on the clinical and professional side — specialist competence, child progress, cooperation. But it consistently falls short on the human side, for the parent: support during transitions, emotional and psychological care, help navigating resources, and a genuinely family-centered approach.

In other words: children are getting good therapy, but parents are often left on their own with the bureaucracy, the stress, and the uncertainty at exactly the moments they need support the most.

Based on a survey of 174 parents of children with developmental disabilities in Bulgaria, Italy, the Netherlands, and Romania, conducted as part of an international project assessing early childhood development  services.

M-Power project

Through the international M-Power project (a partnership between Karin Dom Foundation, SOFT tulip, Fondazione Paideia and Babeș-Bolyai University), we are not letting these statistics stand. We believe that quality care for a child starts with a strong, fully supported family.

What we will achieve with M-Power:

🔹 Strengthen parent-to-parent networks – ensuring no parent has to go through this alone (peer support).

🔹 Protect emotional well-being – developing practical tools and training focused directly on parents’ mental health.

🔹 Exchange knowledge across Europe – gathering best practices from the Netherlands, Italy, Bulgaria, and Romania into a practical Handbook.

🔹 Train professionals and parents together – closing the gap between care providers and families to make support truly family-centered.

The children are getting therapy. Now it’s time parents get the support they deserve.

M-Power is funded by the Erasmus+ Programme of the European Union. Note that views and opinions expressed are however those of the author only and do not necessarily reflect those of the European Union or the European Education and Culture Executive Agency (EACEA). Neither the European Union nor the granting authority can be held responsible for them.