International Edition
How much do you have in common with these parents from around the world?
Childhood disability is a global issue — and so are the issues faced by their parents.
I want Medical Motherhood to show parents that they are not alone. I want them to know that the struggles they face are not unique to their family, their locality, or even their state. Even outside of America, there are people fighting the same battles. It is always amazing to me to read a headline and realize that some family far away — who speaks a different language and lives under a completely different system of government — is still dealing with the same stuff. Or, sometimes I look at another country’s news and realize just how far we have come.
We are truly a global community of parents and we can draw strength, solidarity and inspiration from each other. So, please, enjoy this week’s all-international news round up.
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Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From The Independent (U.K.): “Two in five parents ‘educate disabled children at home due to lack of provision’”
Nearly two in five parents have been forced to educate their disabled child at home because of a lack of suitable provision or funding, a survey has found.
A third (33%) of parents of disabled children have had to go to tribunal to have their local authority agree to fund their child’s education, according to the poll for disability charity Sense.
Parents have been forced to give up their careers because their children’s needs are not being met, while others have had to spend their children’s savings to fight for support, the charity said.
The survey, of 1,001 parents and guardians of disabled children under the age of 18 in the UK, found 46% struggled to get an education, health and care (EHC) plan in place for their child, and a similar proportion (45%) said they had faced difficulties in getting the plan delivered.
The charity has estimated that around 200,000 disabled children in England are having problems getting the right support through an EHC plan.
[…A mom quoted anonymously in the report said:] “We had no understanding in terms of where we go with this and how to navigate the system, which I think is corrupt and working against a lot of families. I decided to leave my job so I could really focus on helping my son on a day-to-day basis.”
She added: “There are so many levels where the EHC plan has been a massive failure, and the plan is totally watered down.
“They’ve not included all the appropriate provisions and it’s written in a way which gives the school no clarity.
“There’s so much grey area so I’m unable to hold local authorities to account for not meeting my son’s genuine needs.”
[…]A Department for Education spokesperson said: “For too long, children and young people with Send have been let down by a system that is not working, with parents too often battling to get their child the support they need and, more importantly, deserve.
“We are committed to improving inclusivity and expertise within mainstream schools, as well as making sure special schools cater to those with the most complex needs.
“There is no ‘magic wand’ to fix these deep-rooted issues immediately, but we have already started and will act as quickly as possible to ensure that every child gets the best start in life.”
• From The Standard (Hong Kong): “Most dads feel the heat of caring for special-needs kids”
Most fathers of children with special needs experience negative emotions or behavior, with 65 percent reporting feeling shame, a University of Hong Kong study has revealed.
Led by assistant lecturer Lo Kai-chung from the department of social work and social administration, this research is the first in Hong Kong to focus on fathers' emotions and their involvement in caring for children with special needs.
Lo said researchers held in-depth interviews with 31 fathers of children aged two to 12 with special needs and collected questionnaires from 437 father caregivers.
Findings indicated that many fathers grapple with feelings of shame and guilt.
These negative emotions often lead to avoidance or compensatory behaviors in interactions with their children.
"Some felt they overreacted or lost control when disciplining children, a sentiment their spouses may also share, viewing the discipline as excessive. This can lead to guilt once they have calmed down," Lo said.
[…]Lo said such caregiving roles are often underestimated in Chinese society.
As a result, men are less likely to openly discuss domestic issues or seek support.
The research team advocates enhanced support services tailored for dads, the implementation of a "father-friendly policy," and increased community education to reduce the stigma surrounding such children.
• From The Economic Times (India): “Justice B V Nagarathna: Policies must focus on removing barriers for differently-abled children”
Policies must focus on removing barriers for differently-abled children as removal of these obstacles paves the way for integrating them into society, Supreme Court [of India] judge B V Nagarathna said on Saturday. The judge was delivering her inaugural address for the two-day event, 'National Annual Stakeholders Consultation on Protecting the Rights of Children Living with Disabilities', organised by the apex court's Juvenile Justice Committee in association with UNICEF.
Justice Nagarathna, who is also the committee's Chairperson, said, "In a world where resources are limited and competing priorities abound, ensuring that policies affecting children living with disabilities are grounded in robust data and vigorous research is paramount."
[…]She said children and persons with disabilities have to struggle because of the intersection of their vulnerabilities with barriers in society, and when these are removed, they become part of society with equal access to opportunities.
"Thus, policies should focus on removing these (barriers), such as inaccessible social services and systems, lack of access to assistive technology, lack of accessible communication formats and limited support for their parents or caregivers," said Justice Nagarathna. […]
Want More?
Here are a few more headlines from around the world this week:
• New Zealand: “A mother's raw story of struggle to get care for a child with a significant, unlabelled disability”
• Malaysia: “Para SUKMA Athletes Achievements Will Hopefully Spur Parents To Register Disabled Children”
• Greece: “Parents of disabled children urge nationwide support for protest over school mergers”
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