Advocacy group will raise awareness of the special needs community
A new advocacy group has been created to shed light on the concerns of the Island's special needs community.
The Bermuda Special Needs Network is calling for an accurate census of the population of special needs residents here.
“We're trying to help Bermuda's special needs community be better understood,” said Jose Lopez. “We want to raise awareness for some of its most pressing issues, and then ask Government to let the community know how these issues are being addressed.”
Mr Lopez is director of The Friends of Hope Academy charity and president of the Dame Marjorie Bean Hope Academy PTA.
The academy is located at the former premises of Orange Valley, a Government-funded special needs school catering to older candidates.
“The persons in the Orange Valley programme were transferred to a facility on the Mid-Atlantic Wellness Institute grounds,” Mr Lopez explained. “That was considered temporary. Now that's nine years on.
“The current Orange Valley facility, according to concerned parents, does not have sufficient space, is not purpose-built, staffing levels are considered stressed and the programme can't take any more people.
“There are families whose children will be leaving the education system at the end of the school year and it's understood that there is not space at programmes they should be able to transition to. That's an issue that needs addressing.”
The group plans to request Government for data to set up a national registry to cover a population dealing with a disparate range of challenges.
Special needs advocate David Peniston said that when the BSNN first called an open meeting in December 6, “many parents came who had children that I didn't know had special needs. And I've been working with special needs children for 21 years”.
He added: “Attendance included the Minister of Health, the Permanent Secretary of Health, the Shadow Minister of Health, representatives from the National Office for Seniors and the Physically Challenged, parents, therapists, teachers and paraprofessional aides.
“We had parents, educators, various people from across the Island. We got input from everybody to find out what the needs are as a group.”
Kimberly Mills, executive director of the autism intervention charity Tomorrow's Voices, estimated that close to 95 people from across the community showed up.
The BSNN subsequently harnessed Facebook to spread its message online. The Centre on Philanthropy, meanwhile, provided what programme coordinator Lorna McGowan describes as “a neutral space” for different groups to collaborate.
WindReach executive director Erica Fulton said: “We came together from a sense of need to get the like-minded groups and organisations on the same page. It's about getting together and not repeating the same work. It's an umbrella organisation, rather than different groups working in isolation.”
When it comes to a national registry of special needs persons and services catering to them, she added: “Most of the special needs population is hidden. That's especially true with mental health issues.”
Dr Mills explained: “What we're talking about is data. When we craft an intervention plan to solve a problem, the data gives us that snapshot of where we are. It's not that the situation is all bad; we just need a clearer picture.”
The group acknowledges that not everyone with special needs might welcome being added to a register, but that those who choose to “opt in” will need to be connected with the right services.
Mr Peniston said: “There are people out there who are falling through the cracks. If we pull together as a conglomerate, we're better able to let people know what's being offered, whether by Government or something privately funded.
“For example, I just recently found out about Project Action. I didn't even know about them. They offer transport and respite care for adults. We need to pull all that information together.”
In the case of a national registry, much of the work could be as simple as pulling together existing information, the group's members said.
The Transport Control Department, for example, maintains certain special needs records.
Other issues simply need to be highlighted, Mr Peniston said. Government's decision to place special needs children in a regular school environment is not ideal for all.
“Some need their own special schooling,” he said.
“There's also a need for more legislation. Children are covered by legislation, and so are seniors, but there's all that in between.”
As well as joining groups together, Mr Lopez said, the Island's special needs community is in need of advocacy that will challenge inactivity.
“What will Bermuda's special needs care look like tomorrow, in five, ten, 15 years' time? There are some important documents that help lay this out, with one being the National Health Plan.”
Within this document Government commits to establishing services for those with “physical and cognitive or mental disabilities” in four years, he said.
“On one hand, you could say it's disappointing that it could take so long.
“On the other hand, Government has set a time limit. So our group can remind them.
“As advocates, it's important that we stay focused on the issues and continue to challenge inaction, because there are people out there who are struggling and suffering and they're not getting resolutions to their problems on their own.”