Dear Parents and Carers of Children with PWS age 5 years and younger.
We are delighted to let you know that PWSAI has received approval to extend the use of funding from the RTÉ Toy Show Appeal to help provide access to therapeutic supports for young children with Prader-Willi Syndrome (PWS), particularly those who are waiting for services or whose therapeutic needs are not currently being met through their local Children’s Disability Network Team (CDNT).
We know that many families are experiencing long waiting lists for services such as physiotherapy, occupational therapy and speech and language therapy. We also understand that, for some families, paying privately for these services is simply not financially possible.
Two Funded Sessions for Children Aged 0–5
Through this funding, each child with PWS aged 0–5 years can access up to two funded therapeutic sessions.
The support is intended for children who have an identified need for therapeutic input and who are:
- waiting for a relevant service through their CDNT;
- unable to access the therapy they need through their current service; or
- not currently having their therapeutic needs adequately met.
The aim is to help families access appropriate support while they are waiting and provide additional opportunities to support their child’s development and wellbeing.
What type of support can be considered?
Families can identify a reputable, appropriately qualified therapist or therapeutic provider in their local area. This could include, for example:
- Physiotherapy
- Occupational Therapy
- Speech and Language Therapy
- Equine-assisted or therapeutic activities
- Other appropriate therapeutic supports
If you have a particular therapy in mind and are unsure whether it would meet the criteria, please contact PWSAI before making arrangements.
How does it work?
- Identify a suitable therapist/provider in your local area.
- Contact PWSAI with the details of the proposed support.
- Complete the PWSAI Payment Due Form.
- PWSAI will check the therapist’s qualifications, experience and the proposed support to ensure it meets the criteria for the funding.
- Once approved, the family can proceed with the agreed support.
Please do not commit to or pay for sessions before receiving confirmation from PWSAI, as funding cannot be guaranteed for services that have not been approved in advance.
PWSAI will check the relevant qualifications and experience of therapists and providers before approving funding, to ensure that the support is appropriate and meets the criteria of the funding.
Dietitian Support Continues
We also want to remind families that dietitian support remains available to ALL people with PWS, regardless of age.
The dietitian service provides specialist PWS-informed dietary advice and is available through both online and face-to-face appointments.
Supporting Families
We know that parents and carers are often doing an enormous amount to support their child, while also navigating waiting lists, appointments and different services. Our aim is to give families some additional practical support and access to specialist knowledge that can help improve their child’s development, wellbeing and quality of life.
This funding is intended to complement, rather than replace, statutory services such as the CDNT. We would still encourage families to remain on relevant waiting lists and to engage with their child’s existing healthcare and disability services.
PWSAI will keep a record of requests and the supports provided so that we can understand the needs of families and the demand for these services.
A review of the therapeutic and dietetic supports will take place at the PWSAI Board meeting in Q1, when we will assess the uptake, impact and ongoing availability of the supports.
If you think your child could benefit from this support, please get in touch with Emma in PWSAI. Contact info@pwsai.ie
