Helping care for the vulnerable
Parents naturally fret about what could happen to their children after they die, but for the parents of sons and daughters with intellectual disabilities it can be particularly scary.
A trust exists that acts as an independent advocate for people with intellectual or learning disabilities, to ensure they are getting the care they deserve and that no one is taking advantage of them. The Personal Advocacy Trust is a national organisation that was set up in 1967 to give peace of mind to parents and to provide a safety net for their children.
In exchange for a one-off fee the trust provides advocacy/friendship for the person with an intellectual disability after their parents have died, for the rest of the trust member’s life.
Nelson woman Jan Fryer is the Nelson representative of the trust. She spoke to The Leader to raise awareness of the trust and that the service exists.
Jan currently has seven people that she actively meets up with, and another 10 people who are nonactive trust members as their parents are still alive.
The youngest person she meets is in her 40s, and the eldest 77. Their abilities also cover a wide range. Jan visits the trust members every month for two hours, and her visit is usually a social friendly visit. She also gives them birthday and Christmas presents from the trust.
Jan says she sees her self as a watch-dog and most of the time does not need to do anything further than her monthly visit.
She is also there to liaise with staff at the facility where the person lives and they can raise any issues with her. ‘‘If there are problems then we go into to bat for them.’’
Her clients are vulnerable and trusting, so financial abuse is a particular concern. She has been in her role for 21⁄ years with the trust, and says her role as advocate has seen her go to the doctor with the member – ‘‘they can have trouble being listened to’’ – to helping with palliative care and funeral arrangements for some who might not have any family.
‘‘We are a watchdog. It is another layer of society for the parents that someone else is watching out for the welfare of their child. We don’t usurp a family’s rights. We work with that family if they want to.’’
Other family members of the client could be spread around the world. ‘‘Having someone locally, it’s really helpful. It’s nice for the family to know that there’s someone on their side.’’
Jan says the trust also struggles to get volunteers to go and visit some of the people they care for. If you have a few hours to spare she would love to hear from you. Volunteers are supported and while it is unpaid, the trust pays some expenses.
For more information visit patrust.org.nz or email Jan on fryerj-r.hira@xtra.co.nz.