Various parties are responsible for the funding and organization of the care and support required, including the Care Assessment Center (CIZ), pediatric nurses, municipalities (neighborhood teams), care administration offices and health insurers. In practice, it appears that parents have to put a lot of energy and time into organizing the assessment and care. To improve this and to relieve families, the Knowledge Center for Palliative Care, together with the Branch Association for INtegrale KindZorg (BINKZ) and jb Lorenz; a consultancy firm in and around the social domain, from 2020 to August 31, 2022, ran the Pilot Cross-Domain Indication.

Purpose of the pilot

The aim was to provide the child and family with a single indication – which crosses all laws – for appropriate care and support. After all: how it is arranged at the back in terms of financing should not matter for the care that is needed at the front! These indications are issued by an indication team, consisting of pediatric nurses, doctors, Youth Act and Wmo indication setters and indication setters from the CIZ and health insurers.

The target group

The target group of this pilot were children and young people aged 0-23 who suffer from a life - threatening or life - shortening condition . The care and support for the child and/or family members includes physical, psychological, social, pedagogical and spiritual aspects.

Pilot duration and region

The pilot ran from October 1, 2020 to August 31, 2022. In order to improve the organization of care for families and to relieve them, experiments were carried out in the regions of two Integrated Child Care Networks with cross-domain indexing, namely: NIK Holland Rijnland and NIK North Holland & Flevoland .

What have we achieved?

One indication across all laws turned out to be unfeasible, after various assessment frameworks within the Wlz, Zvw, Youth Act and Wmo. We have achieved the following things together:

• 92 families have been helped with the indication(s). By streamlining, coordinating deadlines and gaining insight into which legal framework it is up to, parents were no longer sent from pillar to post;
• A Vektis data analysis has been carried out, the results of which have been bundled in a fact sheet;
• Seven knowledge sessions were organized because we found that there were enormous knowledge gaps among assessors about the (im)possibilities in the other laws.
• The biggest bottlenecks have been identified and will become clear in the progress and final reports.

Findings

Without being exhaustive, we share some of the most important findings from the pilot.

• The social domain plays a major role in pediatric palliative care;
• There are knowledge gaps within municipalities about the role they play in the care of (seriously) ill children;
• What is not generally known is that the CIZ only issues a Wlz indication in children with a dominant VG basis;
• Parents sometimes receive verbal feedback, with the message that the care they need is not covered by the Health Insurance Act. As a result, there is a lack of transparency;
• There appears to be a great deal of ambiguity surrounding the determination of a medical necessity (particularly in the case of personal care). Only a medical professional can determine this medical necessity or lack thereof.

Final conclusions

• Providing one indication across all laws within child palliative care has so far proved impossible, due to the differences in assessment frameworks within the various laws and the policy freedom of each municipality in the Netherlands;
• An integral payment title for the Zvw and Wlz appears to be inappropriate for the social domain in view of the above.

Final report

View the final report of the Cross-Domain Indication pilot here.