Dear Parent/Guardian,

We are currently gathering information to better understand the real cost of disability for individuals aged 16+ living with Prader-Willi Syndrome (PWS) in Ireland, including those living at home with family and those living in residential care settings.

As you may know, the Department of Social Protection is reviewing disability payments. It is essential that the lived experiences of people with PWS and their families are accurately represented.

We would greatly value your input.

We are especially interested in understanding:

  • What supports or services are needed but cannot be afforded?
  • What areas of daily life is your person with PWS forced to cut back on due to costs?

Please consider their situation (whether at home or in residential care), for example:

  • Food and specialised dietary needs
  • Heating, electricity and household bills
  • Activities, social participation and exercise
  • Medical, therapeutic and mental health supports
  • Transport and travel costs
  • Clothing and personal items
  • Food security measures
  • Supervision, care or additional supports not covered

We understand that costs may differ depending on whether a person with PWS is living at home or in residential care.

All responses will be treated confidentially and used  to support a national submission advocating for more appropriate supports for people with PWS.

Thank you for taking the time, your input is vital in ensuring that the needs of people with PWS are properly recognised.

Deadline: Monday 30th March 

Email: Emma at info@pwsai.ie