Parents of children with disabilities should be granted extended maternity leave and more community-based support, disability rights advocate Felicia Inniss has urged.
Speaking at the St James Ideas Forum town hall meeting at the Frederick Smith Secondary School on Wednesday night, she presented several proposals to improve the lives of families raising children with intellectual and developmental disabilities.
Inniss, who also welcomed the introduction of paternity leave, said there needed to be a greater focus on challenges faced by parents of children born with disabilities.
“My idea is that when a female or a family has a child with a disability, if the disability is known at birth, like a severe intellectual impairment, that these parents be given extended maternity [and paternity] leave,” she said.
She explained that traditional leave often fails parents of children with complex needs.
“You would leave work, and you intend to go back to work in about six weeks or three months. When you have a child with a disability, that tosses that on its head altogether. It is not only about the child; it then becomes about you. You need psychological support. You need the extended support because if you’re not going back to work, if it is a single-parent household, there’s no money coming in,” Inniss said. “I’m humbly pleading tonight that we take a look at how we treat parents who have children with intellectual impairment, disabilities—extend their maternity leave, support them through the process because it impacts on you mentally.”
Inniss pointed out that for many parents, returning to work in a few weeks was often not feasible.
“You are in no headspace to go back to work in six weeks because at the end of that period, there are very few daycare facilities that are gonna accept that child,” the disabilities rights advocate said.
“Sometimes when I sit back and hear people speak about disabilities in Barbados, if I did not live here, I would think that we only have physically challenged people on this island—blind, deaf, dumb, people in wheelchairs. We do not ever look out for the intellectually impaired. That is my suggestion—that we review how we look at maternity leave.”
Asked how long extended leave should be, she said, “I would suggest that an assessment be done…. I worked in healthcare, but I can’t make a judgement call. It would all depend on the disability. And I would suggest that a discussion would have to be had with the persons who do the assessment.”
However, Inniss noted that there is a lack of resources for proper evaluations.
“We only have one developmental paediatrician on this island. Her retirement time has passed, and the government has asked her to stay on. So then she goes.… Parents sometimes cannot get to the only place, the Albert Cecil Graham Development Centre. What we can do: Let the assessments be done, the physiotherapists, the occupational therapists, the audiologists write what they want done, and then we send the rehab therapists out into the community to work with the families that need the service. We need to sit down and get it right,” she recommended.
Inniss, drawing on her own experience as a parent of a child with disability, shared: “I still consider that I am a parent of a child with a disability. She passed away in 2006, but this is my network. These are my friends. These are people that I’ve shared 41 years with.”
She also called for urgent action to support ageing parents caring for adult children with intellectual disabilities.
“There are persons with intellectual impairment in Barbados that are in their 40s and 50s. I’m in touch with families and they call me all the time,” she said. Referring to the situation in a specific household, she added, “The father is in his 80s, the mother is in her 70s, the young man is 50-plus, and every day all they say to me, ‘but if we die, what are we going to do? What’s gonna happen with him?’”
To address this, she proposed creating supervised housing for adults with disabilities to live semi-independently before their parents pass away.
“If we work with them, we can set up housing situations with supervision where these persons, before their parents pass, can live semi-independently. Because if their parents pass, it is going to be chaos,” Inniss cautioned.
Rejecting the frequent emphasis on infrastructure, she insisted, “When we say buildings, I get offended. We do not need buildings. We need people with heart. We need people that understand what is going on. And I keep hearing we’re going to build this and we’re going to build that. We don’t need to build anything.”
Instead, she suggested community-based respite programmes. “The same way that we get foster care done with so-called regular children, I think that if we do a good public awareness programme and education programme, we can get persons to do respite. Like, if you have a child that is severely disabled and you need a break, a family would have been identified, they would have gone through the process, and then that child can go spend three days with that family and give the parents a break. I even got a name for the programme: If there’s room in your heart, there’s room in your home.” (SZB)
The post Call for more leave, support for parents of children with disabilities appeared first on Barbados Today.
