Jan Moss advocates for parents and carers of high-needs people. Photo / Natalie Slade
To nominate an Unsung Hero for their community service and for terms and conditions go to: www.unsungheroes.org.nz
Jan Moss's career helping families with disabled children began 25 years ago.
That was when her daughter Becky, now 26, was diagnosed with Lennox Gastaut Syndrome, a severe form of epilepsy.
Ms Moss gave up her nursing career as she tried to get help and support at home. At
that time, the Government was closing the institutions that had looked after special-needs children.
Becky has the mental age of a toddler. She does not talk, and suffers more than 100 seizures daily.
Ms Moss now uses her experience to help others get the support and relief she so needed. She advocates for parents and carers of high-needs people by lobbying politicians, lodging complaints with the Health and Disability Commissioner and facilitating family group conferences.
She has been nominated for the Herald's Unsung Heroes series by her colleague at Carers New Zealand, Laurie Hilsgen.
The series recognises the work people do in their communities, and five nominees will be chosen to go on a P&O cruise.
Becky spends four days a week at the family home in Orewa, looked after by two carers. This gives Ms Moss time to help the 150 families of Complex Carers, the organisation she helped set up.
She co-ordinates research for the Ministry of Health, so it can initiate services and policies where they will be of most benefit.
Often carers cannot attend meetings with support agencies because of the home situation, so Ms Moss helps to present a collective voice.
And yes, she is paid for some work.
"Those in a voluntary capacity are often not taken seriously.
"If you can say you're paid, you are treated as a professional."
In 1990, Ms Moss set up a support group on the North Shore for families of children with severe epilepsy syndrome, and ran it for 12 years. There were just a few families at first; two years ago, there were 45 members.
"I had worked with the YMCA cardiac rehabilitation unit, and I know the value of support groups. They share experiences, and this is helpful.
"The problems associated with dealing with disabilities is hard to imagine for people who don't do it.
"The parents don't want sympathy or pity. They just want a level of awareness of what they are doing."
The Unsung Community Heroes series is run annually in the The Herald and on nzherald.co.nz in partnership with P&O Cruises. We invited nominations from readers to recognise people who selflessly work to make a difference in their local communities.
Some will be selected to feature in the paper and on nzherald.co.nz. Five will be chosen to join a P&O winter cruise.
