Transition timeline for your child's future

Not letting go, but holding differently

Transition timeline for young people with CdLS and their families

At what age which steps?

Age 14 years or younger

  • Start having conversations about transitioning care with your child's caregivers
  • Do this with a multidisciplinary transition team.
  • When the children's team initiates: Involve a team member from adult care as well. Of course, the same applies vice versa. Don't make the team too big (maximum 6 people).
  • Work with your child's caregiver(s) to create a transition care plan, and ensure that a review of the plan takes place every year. Create a regular meeting structure for the transition team to discuss approaches and progress.
  • Set goals and create a plan of action.
  • The transition care plan is in your child's medical record and is also updated annually
  • Your child's school or day care centre will meet with you and your child for the personal education plan with an initial proposal for an attainment profile.
  • Look at what your child's skills are, see what can be improved. Also see what self-management and self-reliance can be improved as far as possible.
  • See what things you can let go of, see what your child can do on their own.

Age 16 years

  • Stay active in seeing what your child's self-efficacy and self-management capabilities are.
  • The personal education plan includes a transition section incorporating transition of care. This is updated every year.
  • The exit profile is drawn up.
  • The transition of care plan is also updated at least once a year together with the medical provider.
  • Make sure you are well informed about guardianship.
  • Put together a good team of adult care provider(s).
  • You get child benefit for raising and caring for children up to 18 years of age. Children with intensive care needs often get double child benefit. The (double) child benefit stops when your child turns 18. You will get information about this from the Social Insurance Bank (SVB).
  • When your child with a mental disability turns 18, you will need to arrange a number of matters relating to money, benefits and insurance. Do some research on this, what are the requirements?
  • A Digid will need to be applied for.  This allows your child to access government websites. It also gives access to personal data at the UWV, Tax Office and various healthcare websites. With the Digid, your child can possibly apply for healthcare and rent benefits, apply for Wajong benefit and arrange tax returns online.
  • After the DigiD has been activated, you and/or the mentor, administrator, curator can apply for an authorisation. This authorisation allows you to make applications or changes on behalf of your child.  
  • Explore options for healthcare coverage.

When your child turns 18, you must take out your own health insurance for him or her. You pay a premium for this. Your child is then entitled to care allowance as a contribution towards the cost of their own health insurance. You can apply for care allowance for your child through the Tax Administration.

  • Open a separate bank account number for your child. To receive care allowance or rent allowance, it is important that an account number is opened in the name of the person receiving the care or rent allowance.
  • Continue to promote your child's self-management skills as much as possible.
  • Explore different housing options.
  • Research which transport is suitable for your child.

Age 18 years

  • All legal documents regarding guardianship, power of attorney and/or medical directives should be arranged.
  • Social security benefits and other entitlements must be applied for before age 18 plus.
  • Health insurance for 18 plus must be applied for.
  • Should your child/young person not live at home, an adult medical residential facility must be applied for, unless your child/young person is allowed to live longer in the residential facility where your child resides.
  • The outflow profile is worked out. In the attainment profile, the school/day care centre indicates what a pupil is expected to achieve at the end of education at that school/day care centre. A transition profile prepares pupils for progression to further education, the labour market or day-time activities.
  • Does your young person need a disabled parking card? Disabled motor vehicle parking card?
  • Provide a card with medical information for your young person to carry.

age 21+

  • Transition to adult care provider(s) must be complete unless special arrangements have been made.
  • Check to what extent the outflow profile has been fully worked out, and whether any matters still need to be arranged for this.
  • Try to involve the young person as much as possible in making future plans.

 The aim at all times is to plan the best possible future for the young adult with well-supported choices.

The roadmap may involve several discussion points:

  • Further education and/or training programmes 
  • Long-term care plans 
  • transport
  • healthcare
  • safety
  • entertainment
  • financial needs
  • who are in the immediate vicinity as support?
  • companionship
  • a life with substance and happiness, a good quality of life

Find other pages that share the same topic as this page Legal issues and guardianship4
Bonnie Royster

The Cornelia de Lange Syndrome (CdLS) Foundation (USA) provides a host of services for anyone touched by this little-known genetic syndrome and other isolating conditions. Learn more about us, visit

Page history
Last modified by Gerritjan Koekkoek on 2023/08/17 14:25
Created by Gerritjan Koekkoek on 2022/02/28 14:22

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