Dozens of parents have met in Auckland to raise their concerns about what will happen to their disabled children when they can no longer care for them.
The meeting run by Disability Connect, which helps support disabled people and their families in the city, was attended by more than 80 parents and caregivers.
Colleen Brown previously told Nine to Noon parents of adults with disabilities were demanding more government help as they and their children aged.
She said the meeting was intended to facilitate connections between caregivers, and allow people to air their concerns with Ministry of Health representatives.
"The overriding concern was, 'who is going to look after my young or older person when I'm not here," she said.
"Some very brave parents stood up and said, 'I have three, four, five children and none of them will be able to look after my son or my daughter,' and that's heartbreaking."
She said it was important they had quality and consistent carers.
"Even though the person with the intellectual disability may present as being quite able, they have underlying, complex issues that require ongoing support.
"They require somebody to have that overall knowledge all the way through, not just a different caregiver popping in on a daily basis, they need that historical overview of what's gone on before."
She said parents were also concerned about the housing situation, and finding suitable accommodation for their children.
"One parent said, 'I'm a professional and I can't get somewhere to rent, so who is going to rent to our children'."
The Ministry of Health said it appreciated the opportunity to listen to what families had to tell it.
Disability support manager Toni Atkinson said the Ministry was committed to improving the way people and families were supported through the proposed system transformation.
"There are some key themes that came through, for example, the quality of carers, a lack of information about what options are available [and] what happens after people leave the school system.
"The ministry is keen to keep on talking with the group and there are opportunities to improve the supports in Auckland prior to full system transformation.
"For example, changes to respite as set out in the respite strategy which is being released this month."