Latest news with #Autistic
Scoop
3 days ago
- Health
- Scoop
Australia: PWDA Calls For Clarity And Inclusion Following Delays To Foundational Supports Rollout
Press Release – People with Disability Australia – PWDA PWDA welcomes the Governments ongoing commitment to disability reform and stands ready to work collaboratively to ensure foundational supports are implemented in a way that is timely, inclusive, and sustainable. People with Disability Australia, the national peak representative and advocacy body, is calling on the Federal Government to provide greater clarity and to consult more closely with people with disability, following the announcement that the rollout of foundational supports – scheduled to begin on 1 July 2025 – will be delayed. Foundational supports are designed for people with disability who are not eligible for the National Disability Insurance Scheme (NDIS). They are especially relevant for Autistic children and people with psychosocial disability. The delay has created uncertainty in the community about when and how these essential supports will become available. PWDA President Trinity Ford said that while the disability community understands the complexity of implementing this reform, and the need to get it right from the start, it is critical that all people with disability are brought along and involved. 'Many people with disability who are not eligible for the NDIS still have real and ongoing support needs,' Ms Ford said. 'These foundational supports will hopefully create a more inclusive and equal network of disability supports. But delays and uncertainty around the rollout's details, timelines and co-design means people with disability are still waiting – unsupported and without answers.' PWDA emphasises that early intervention and accessible community-based supports are key to improving long-term outcomes for people with disability, particularly those who have historically fallen through the cracks of service systems. 'We're calling on the Government to communicate transparently about next steps and to ensure people with lived experience of disability are at the centre of future planning,' Ms Ford said. 'It's vital that the design and rollout of these supports reflect the diversity of our community – including people with psychosocial disability, children with developmental concerns, and others who are not being serviced by the NDIS.' PWDA welcomes the Government's ongoing commitment to disability reform and stands ready to work collaboratively to ensure foundational supports are implemented in a way that is timely, inclusive, and sustainable.
Scoop
3 days ago
- Health
- Scoop
Australia: PWDA Calls For Clarity And Inclusion Following Delays To Foundational Supports Rollout
People with Disability Australia, the national peak representative and advocacy body, is calling on the Federal Government to provide greater clarity and to consult more closely with people with disability, following the announcement that the rollout of foundational supports – scheduled to begin on 1 July 2025 – will be delayed. Foundational supports are designed for people with disability who are not eligible for the National Disability Insurance Scheme (NDIS). They are especially relevant for Autistic children and people with psychosocial disability. The delay has created uncertainty in the community about when and how these essential supports will become available. PWDA President Trinity Ford said that while the disability community understands the complexity of implementing this reform, and the need to get it right from the start, it is critical that all people with disability are brought along and involved. 'Many people with disability who are not eligible for the NDIS still have real and ongoing support needs,' Ms Ford said. 'These foundational supports will hopefully create a more inclusive and equal network of disability supports. But delays and uncertainty around the rollout's details, timelines and co-design means people with disability are still waiting – unsupported and without answers.' PWDA emphasises that early intervention and accessible community-based supports are key to improving long-term outcomes for people with disability, particularly those who have historically fallen through the cracks of service systems. 'We're calling on the Government to communicate transparently about next steps and to ensure people with lived experience of disability are at the centre of future planning,' Ms Ford said. 'It's vital that the design and rollout of these supports reflect the diversity of our community – including people with psychosocial disability, children with developmental concerns, and others who are not being serviced by the NDIS.' PWDA welcomes the Government's ongoing commitment to disability reform and stands ready to work collaboratively to ensure foundational supports are implemented in a way that is timely, inclusive, and sustainable.
Irish Independent
21-05-2025
- Business
- Irish Independent
Cork man Cian's mobile horsebox barbershop going down a storm with his growing custom base
Cian Leahy opened his business 'Giddy Up Cutz' nine months ago after working for various barbershops in Cork for a decade. Mr Leahy was inspired while he visited a coffee trailer and observed that a barber chair could fit into the area. 'I ended up going to a coffee trailer and I was watching the baristas walk around inside it and I thought to myself that a barber chair could fit into one of those. 'Then the next day I went to view one and when I was there, I said to myself 'yes, a chair will fit in there' and I went with it,' he said. The barbershop is the first of its kind in Ireland and is kitted out with a authentic barber chair, a TV, music and a mirror. Mr Leahy said after working for other business owners for a decade, it was time for him to 'do his own thing.' 'I built a strong enough customer base for them to follow me and it worked out. 'Mostly children love it because they love the idea that they are going to a horse box, like from the outside it is a horse box but from the inside it's a barber shop. 'I want people to feel comfortable inside there as well,' he said. He said that he loves chatting to customers, especially the elderly. 'I love talking to the older generation because they will have stories about the villages you're in, and they would know the history behind this and that.' 'Also, I love meeting new people and clients can become friends quicker than anyone else. 'Like, say you have a problem with a car, I could have 15 different clients who could recommend 15 different mechanics. 'Everyone will help you, which is a great thing,' he added. Mr Leahy prides himself in offering an Autism friendly atmosphere, with quiet machines, the ability to put cartoons or sensory videos on for Autistic people, as well as offering a quiet service. People have travelled from the likes of Fermoy for his Autism friendly service. 'People would come from all over to the honest. I would get Instagram messages saying people are coming from Fermoy, and I'm like 'oh, fair enough'.' 'Parents might show their kids a video of the horse box and they might think it's cool and they want to go. 'They will already feel more comfortable, and I'd throw on whatever cartoon they want on the TV or even turn everything off, if they would prefer that,' he said. Mr Leahy said acquiring a licence was 'hard' due to the uniqueness of the business. 'It was very hard to get a licence at the very start because you're trying to tell an insurance company that it is a barbershop, but it has wheels and is in a horse box, and they were like 'what now?',' he laughed. 'It is the very first made one in Ireland, so they (the insurance company) hadn't a clue, but I got one in the end after going through about eight different people,' he concluded. Giddy Up Cutz offers its services at the Boathouse in Dripsey from 10am to 6pm on Thursdays, Bweeng (beside Morey's Chipper) on Friday (12pm-7pm) and Saturday (11am-6pm) and Blarney (behind the Church) on Sunday from 9:30am-4:30pm). Follow @giddy_up_cutz on Instagram.
Yahoo
01-05-2025
- Health
- Yahoo
Why RFK Jr.'s search for autism's cause is so divisive
Robert F. Kennedy Jr.'s pledge to investigate autism's 'root cause' has split advocates for people with the condition: Some, like Kennedy, want to know what's causing it, while prominent groups think his search could do more harm than good. Kennedy's grim depiction of the most profound cases of autism — many 'will never use a toilet unassisted,' he said in April — sparked condemnation from several groups devoted to championing autistic people. They said his remarks perpetuate stigmas associated with a condition that has a broad spectrum of manifestations — and, coupled with his well-known vaccine skepticism, color any attempt by the agency he leads, the Department of Health and Human Services, to conduct further autism research. But others who say they speak for people with severe autism were heartened that Kennedy is promising to devote HHS's resources to help them as autism diagnosis rates continue to climb. 'America has a big problem, and we have to face up to it,' said one of them, Jill Escher, president of the National Council on Severe Autism. The divide shows how Kennedy's search for autism's source — he's pledged to have some answers by September — has inflamed a long-simmering debate among people who advocate for those with the neurodevelopmental disorder and suggests that his investigation, whatever its findings, will be politically explosive. In a statement, an HHS spokesperson said Kennedy is 'committed to working toward a society where people with autism have access to meaningful opportunities, appropriate supports, and the full respect and recognition they deserve.' Kennedy's plan, the spokesperson said, aims to further those goals, 'not to stigmatize individuals with autism or their families.' But many in the autism community said Kennedy's not the person to lead the effort. After his speech, several leading groups, including the Autism Society of America, the Autistic Self Advocacy Network, and Autism Speaks, slammed him for spreading misinformation. 'Claims that Autism is 'preventable' is not supported by scientific consensus and perpetuate stigma,' they said in a statement. 'Language framing Autism as a 'chronic disease,' a 'childhood disease' or 'epidemic' distorts public understanding and undermines respect for Autistic people.' But that view is not universal. Escher, who briefly met with Kennedy in April, said she agrees with him that rising autism rates constitute an 'epidemic' even as she rejects his long-held view that they're linked to vaccines. She appeared in an HHS-produced video marking World Autism Awareness Day on April 2. Her organization also took issue with those, like the Disability Rights Education and Defense Fund and experts quoted in a New York Times op-ed, who said they thought Kennedy's research plan was rooted in eugenics — the idea that science could be harnessed to prevent autistic people from being born. In a statement, the National Council on Severe Autism said it 'categorically' rejected the claim. That group and others, like the Autism Science Foundation and the Profound Autism Alliance, believe autism's rise — the most recent Centers for Disease Control and Prevention data says 1 in 31 eight-year-old children have the condition — underscores the need to continue studying potential causes so that people can better understand risk factors and develop treatments for individuals with more severe forms of autism. The Autism Science Foundation chose not to endorse the statement of its peer groups condemning Kennedy, President Alison Singer told POLITICO, because 'there was a focus in that letter that we shouldn't be focusing science on prevention, and we believe strongly that we should.' By identifying causes and developing treatments for severe autism, she said, 'we can prevent our family members from suffering.' While parents of severely autistic children said they appreciate Kennedy's recognition of their experiences, they still take issue with his choice of words. In his April speech, Kennedy also said many people with autism 'will never pay taxes, they'll never hold a job, they'll never play baseball, they'll never write a poem, they'll never go out on a date.' 'You can talk about high-support needs without degrading someone's humanity,' said Judith Ursitti, co-founder and president of the Profound Autism Alliance. Many autism advocacy groups have shifted their efforts in recent years toward amplifying the voices of people who have autism and urging society to accept them — and away from the search for a cause or cure. 'Too large a percentage of autism research is focused on causation. We're missing out on research on things that can best impact people's lives,' Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, said. It was that pivot that prompted Escher and Ursitti to form their own organizations committed to uncovering root causes while also pushing for more federal support for services. Kennedy's rhetoric has thrown fuel on these simmering fires, as has his willingness to favor some groups over others with face time. Representatives of the Autism Society of America, the Autistic Self Advocacy Network, and Autism Speaks said their organizations have yet to get a meeting with Kennedy or other HHS officials. They said they'd like to register their disapproval with Kennedy's search in person. They dispute Kennedy's premise that 'environmental toxins' cause autism and are alarmed by the reported involvement of David Geier, an anti-vaccine researcher, in the search. Those who are talking to Kennedy and HHS said they're not endorsing Kennedy's predilections but hope they can help direct the research by sitting down with those leading it. 'Meeting with people doesn't mean you agree with them,' said Ursitti, whose group has corresponded with staff at the National Institutes of Health who will play a key role in Kennedy's search. Critics of Kennedy's interest in environmental toxins point to studies that have found that genetics play a role in who develops autism and that autism can run in families. Older parents may be more likely to have a child with autism, some research suggests. Other studies indicate that infections or obesity during pregnancy could be factors. A number of large studies have found no link between vaccines and autism. Still, advocates for those with severe autism said they've been largely shut out of clinical research since the Diagnostic and Statistical Manual of Mental Disorders, known as the DSM, was updated in 2013 to collapse subtypes into one diagnosis of autism spectrum disorder. Trial recruitment for clinical research is especially difficult for a population with high-support needs, Ursitti said, and severely autistic people may have trouble demonstrating consent to participate. But she thinks it can be done. 'As we move forward, we don't want to stomp anyone else,' she said. 'We just want to make progress for this particular population.' Gross said Kennedy is undermining his own effort by cutting research. A University of Virginia study that Gross' group was involved in was canceled as part of a Trump administration purge of research related to diversity, equity and inclusion. Gross is also critical of Kennedy's plan to move programs from the Administration for Community Living, which has traditionally supported people with disabilities, into a new agency dubbed the Administration for Healthy Living. And she worries about possible cuts to Medicaid, the federal-state insurer of low-income people, that Republicans in Congress are considering. Kennedy 'is, with one hand, trying to take away autistic people's needs and saying we're here to support autistic people's needs,' she said. Ursitti said she'd like to see her colleagues in the autism advocacy community put aside their differences. 'Everyone on the spectrum, the voices of all groups, truly matter,' she said. 'And we've gotten into this us/them mentality, which really just gets us nowhere.'
Politico
01-05-2025
- Health
- Politico
Why RFK Jr.'s search for autism's cause is so divisive
Robert F. Kennedy Jr.'s pledge to investigate autism's 'root cause' has split advocates for people with the condition: Some, like Kennedy, want to know what's causing it, while prominent groups think his search could do more harm than good. Kennedy's grim depiction of the most profound cases of autism — many 'will never use a toilet unassisted,' he said in April — sparked condemnation from several groups devoted to championing autistic people. They said his remarks perpetuate stigmas associated with a condition that has a broad spectrum of manifestations — and, coupled with his well-known vaccine skepticism, color any attempt by the agency he leads, the Department of Health and Human Services, to conduct further autism research. But others who say they speak for people with severe autism were heartened that Kennedy is promising to devote HHS's resources to help them as autism diagnosis rates continue to climb. 'America has a big problem, and we have to face up to it,' said one of them, Jill Escher, president of the National Council on Severe Autism. The divide shows how Kennedy's search for autism's source — he's pledged to have some answers by September — has inflamed a long-simmering debate among people who advocate for those with the neurodevelopmental disorder and suggests that his investigation, whatever its findings, will be politically explosive. In a statement, an HHS spokesperson said Kennedy is 'committed to working toward a society where people with autism have access to meaningful opportunities, appropriate supports, and the full respect and recognition they deserve.' Kennedy's plan, the spokesperson said, aims to further those goals, 'not to stigmatize individuals with autism or their families.' But many in the autism community said Kennedy's not the person to lead the effort. After his speech, several leading groups, including the Autism Society of America, the Autistic Self Advocacy Network, and Autism Speaks, slammed him for spreading misinformation. 'Claims that Autism is 'preventable' is not supported by scientific consensus and perpetuate stigma,' they said in a statement. 'Language framing Autism as a 'chronic disease,' a 'childhood disease' or 'epidemic' distorts public understanding and undermines respect for Autistic people.' But that view is not universal. Escher, who briefly met with Kennedy in April, said she agrees with him that rising autism rates constitute an 'epidemic' even as she rejects his long-held view that they're linked to vaccines. She appeared in an HHS-produced video marking World Autism Awareness Day on April 2. Her organization also took issue with those, like the Disability Rights Education and Defense Fund and experts quoted in a New York Times op-ed, who said they thought Kennedy's research plan was rooted in eugenics — the idea that science could be harnessed to prevent autistic people from being born. In a statement, the National Council on Severe Autism said it 'categorically' rejected the claim. That group and others, like the Autism Science Foundation and the Profound Autism Alliance, believe autism's rise — the most recent Centers for Disease Control and Prevention data says 1 in 31 eight-year-old children have the condition — underscores the need to continue studying potential causes so that people can better understand risk factors and develop treatments for individuals with more severe forms of autism. The Autism Science Foundation chose not to endorse the statement of its peer groups condemning Kennedy, President Alison Singer told POLITICO, because 'there was a focus in that letter that we shouldn't be focusing science on prevention, and we believe strongly that we should.' By identifying causes and developing treatments for severe autism, she said, 'we can prevent our family members from suffering.' While parents of severely autistic children said they appreciate Kennedy's recognition of their experiences, they still take issue with his choice of words. In his April speech, Kennedy also said many people with autism 'will never pay taxes, they'll never hold a job, they'll never play baseball, they'll never write a poem, they'll never go out on a date.' 'You can talk about high-support needs without degrading someone's humanity,' said Judith Ursitti, co-founder and president of the Profound Autism Alliance. Many autism advocacy groups have shifted their efforts in recent years toward amplifying the voices of people who have autism and urging society to accept them — and away from the search for a cause or cure. 'Too large a percentage of autism research is focused on causation. We're missing out on research on things that can best impact people's lives,' Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, said. It was that pivot that prompted Escher and Ursitti to form their own organizations committed to uncovering root causes while also pushing for more federal support for services. Kennedy's rhetoric has thrown fuel on these simmering fires, as has his willingness to favor some groups over others with face time. Representatives of the Autism Society of America, the Autistic Self Advocacy Network, and Autism Speaks said their organizations have yet to get a meeting with Kennedy or other HHS officials. They said they'd like to register their disapproval with Kennedy's search in person. They dispute Kennedy's premise that 'environmental toxins' cause autism and are alarmed by the reported involvement of David Geier, an anti-vaccine researcher, in the search. Those who are talking to Kennedy and HHS said they're not endorsing Kennedy's predilections but hope they can help direct the research by sitting down with those leading it. 'Meeting with people doesn't mean you agree with them,' said Ursitti, whose group has corresponded with staff at the National Institutes of Health who will play a key role in Kennedy's search. Critics of Kennedy's interest in environmental toxins point to studies that have found that genetics play a role in who develops autism and that autism can run in families. Older parents may be more likely to have a child with autism, some research suggests. Other studies indicate that infections or obesity during pregnancy could be factors. A number of large studies have found no link between vaccines and autism. Still, advocates for those with severe autism said they've been largely shut out of clinical research since the Diagnostic and Statistical Manual of Mental Disorders, known as the DSM, was updated in 2013 to collapse subtypes into one diagnosis of autism spectrum disorder. Trial recruitment for clinical research is especially difficult for a population with high-support needs, Ursitti said, and severely autistic people may have trouble demonstrating consent to participate. But she thinks it can be done. 'As we move forward, we don't want to stomp anyone else,' she said. 'We just want to make progress for this particular population.' Gross said Kennedy is undermining his own effort by cutting research. A University of Virginia study that Gross' group was involved in was canceled as part of a Trump administration purge of research related to diversity, equity and inclusion. Gross is also critical of Kennedy's plan to move programs from the Administration for Community Living, which has traditionally supported people with disabilities, into a new agency dubbed the Administration for Healthy Living. And she worries about possible cuts to Medicaid, the federal-state insurer of low-income people, that Republicans in Congress are considering. Kennedy 'is, with one hand, trying to take away autistic people's needs and saying we're here to support autistic people's needs,' she said. Ursitti said she'd like to see her colleagues in the autism advocacy community put aside their differences. 'Everyone on the spectrum, the voices of all groups, truly matter,' she said. 'And we've gotten into this us/them mentality, which really just gets us nowhere.'
