Andrea Waltzing's 15-year-old son Max is due to leave the Guardian Angels Resource Centre this summer, but weeks before the new school year, she and other parents still have no idea where their children will go next.

Max, like other students at the Guardian Angels Secondary Education Resource Centre - a school catering to children with severe disabilities - automatically becomes a school leaver at age 15, not because he has completed a curriculum, but because that is the cut-off for compulsory education.

His mother, along with many other concerned parents of Guardian Angels' school-leavers, spoke to The Malta Independent on Sunday about the stalemate, as families of students with severe disabilities are still waiting for answers as the scholastic year nears.

"September is around the corner, and parents of these children do not know where they are going. I do have faith that they are working on something, but for me, that is not good enough. We are very anxious parents. We have non-verbal kids. They cannot stay at home alone. It depends where they're going, how far, who needs to take them," Waltzing said.

Until now, students leaving Guardian Angels would typically transition to the Wardija Resource Centre, where they can be kept until the age of 22.

"This is not because it is the best option, but because that is the only option we had," Waltzing said.

"The other option that us parents knew of was MCAST. However, from what I understand and from the little we have been told, students still need to be quite independent (to go there), which they are not," she said.

For many Guardian Angels students, independence is not feasible. "Some of them still use a nappy. They need to be reminded to wash their hands. Even getting on a bus to go to MCAST is a difficulty," she added.

Waltzing said that in previous years, around March or April, someone from Wardija would come to Guardian Angels and explain how the transition would work.

"This year, we were told that is not going to happen because there is now a moderating panel who will decide who is eligible. And that is it. We have not really been told anything else," she said.

"Parents were not consulted. Nobody has come to speak to us. That is really unacceptable. Our kids are already excluded. Now I feel like we have been excluded too. We cannot even disagree or agree or have an opinion," Waltzing said.

The timing is especially frustrating given that a new parent's committee for children with special needs was meant to improve inclusion.

"At the same time this committee was meant to be set up, we are left in the dark. The Inclusion Ministry also told us to wait and be patient. When they reply to emails, which is maybe one in 15, they just tell us to be patient. They have been saying that since March," Waltzing said.

She added that even the school's administration, as well as the headmistress, have been kept in the dark.

"We have a new administration, and they are amazing, but they were not told anything either. They felt very uncomfortable letting students and parents leave on the last day with no information, but that is how the situation divulged," Waltzing said.

Waltzing said that if this was a matter involving mainstream education, "Malta would be up in arms".

"It is just that we are such a small community, and our kids are never going to have a vote. That is how I feel, how we all feel," Waltzing said.

Over the years, parents have written and advocated persistently, but basic needs remained unmet.

"We should not have to write to ministers to get basic education for our children. If anything, they should be getting extra support, not less," Waltzing said.

The situation also prompted PN MP Graham Bencini to file a series of parliamentary questions to Education Minister Clifton Grima, asking him to clarify the eligibility criteria for Wardija as well as to clarify any structured plans the Ministry has for Guardian Angels' school-leavers.

Grima's response was that the Ministry is committed to determine the necessary measures so that each student can be given the necessary assistance.

He also said that each request made by parents has been evaluated, and there is currently a planning process to determine each student's clear path in a programme which is adequate to the individual's needs.

Waltzing said that the Ministry has only told parents that they will be contacted with updates next week - a statement which has been repeated since March and April.

Petition launched to try to get answers

Waltzing's frustration led her to launch a petition after previous appeals and communications went ignored.

While the first petition had nearly 1,200 signatures, Parliament rejected it because it was hosted on unapproved (AVAAZ) format. A new version Waltzing launched closed on 1 August, and has garnered 647 signatures.

"I am really grateful for all the support," Waltzing said.

However, nothing has changed, and the parents have yet to receive a reply from authorities on the way forward, she said.

"In fact, we have even received emails reminding us to book transport for our children, but we cannot book transport because we do not know where they are going, or if they are going anywhere," Waltzing said.

"We cannot just have this blind faith that it will be fine. We need to know; to know if I need to take some more time off from work or get him into private lessons," Waltzing, who is a nurse by profession, said.

Waltzing also spoke about systemic failures in providing promised resources and technology at the same Guardian Angels Resource Centre.

She said that five years ago, Max, who is non-verbal, started using a software programme called, CLICKER 8, which was recommended by the Access to Communication and Technology Unit (ACTU), a government agency which provides services to individuals with complex communication needs, physical and/or sensory difficulties.

Before transitioning to Guardian Angels, Waltzing said that the family was assured that the programme would continue to be used, with trained staff to operate it.

"When Max started, the licence had not been renewed because it was expensive, and no one had been trained," she said.

Waltzing stated that the software was only reinstated after she raised the issue in Parliament, but even then, no one was confident using it.

"There is a lot more you can do with the software, but no one was trained to use it, so it does not get used. Same with signing, simple signing, not for the deaf, but for non-verbal children. It has not taken off, even though we have known about it for years," Waltzing said.

She said that Max used to sign beautifully, however, none of his friends or teachers knew the language, and it was only used at home. "That's a shame," Waltzing said.

A system not built for children with disabilities

Waltzing said the system seems to cut children like Max off before they are ready, which leads to lifelong consequences.

"Legally, compulsory education ends at 15 or 16, but that makes zero sense for our children. They learn much slower. My son is definitely progressing, but if you are going to stop at 15, when even a neuro-typical child would struggle, he is really being set up for regress," Waltzing said.

She said she feared that the message to parents is that they are a burden.

"There is not really a setup that is a worthy future for my future adult son, unless he becomes more independent. So, they need to help him become more independent at least," Waltzing said.

Waltzing said that Max is not independent enough to stay home alone all day.

"I felt relief when he started school. Now I feel guilty, because I feel like I have invested more in him as a mother than the system has," she said.

Waltzing said she hoped that the follow-up petition would lead to more dialogue, especially for this year's school-leavers, the first group facing this new panel decision process.

"This petition's focus is to encourage authorities to talk to us. I do not know if petitions work, but it is nice to know we have support," Waltzing said.

Yet, aside from the Education Ministry, even the Inclusion Department and the Commission for the Rights of Persons with Disability (CRPD) have not offered any help.

"They (CRPD) do a lot of good, but in this case, they have not given us support, and I do not know why," Waltzing said.

Asked what urgent changes she would like to see, Waltzing said that if she could wave a magic wand, she would make sure that these children are also included in mainstream activities.

"You do not need a resource centre that is so segregated. Inclusion does not mean sticking kids in a classroom and expecting the same lesson to work for everyone," Waltzing said.

If she had all the resources at her fingertips, Waltzing said that there would be one school with integrated break times and shared spaces, and more meaningful engagement with neuro-typical peers.

"My child has a lot to teach. He makes you want to be a better person. That is someone worth knowing," Waltzing said.