Scott Watkin
Head of engagement, SeeAbility
The government hasn’t included us and has done nothing but try to make cuts affecting learning disabled people without consultation.
We need social care that’s fit for purpose – now. We don’t want to be waiting until 2028 when the Casey review reports for the government to decide what it wants to do, because social care is broken now and needs fixing.
We want equity for all. We want people to have their voices heard.
Jim Blair
Independent consulting learning disability nurse and associate professor, Kingston University
I’m not disappointed by this government. I’m appalled. It’s shocking that they are doing so many things that are un-Labour.
Why would they target disability benefits to yield money? It’s extraordinarily hard to get personal independence payment in the first place. It’s not big money. They’ve got a huge majority and such an opportunity. The government could get this right. The lessons of the last 14 years are lost on this government. This is just red austerity.
Joanna Green*
Parent carer
I feel very confused about the government’s policies. There have been a lot of disturbing threats to welfare and education care and health plans, but I’m yet to understand what policies are in place and see the effect.
A concern for me personally is a very long wait for the courts to deal with our application for deputyship for my son. It’s taken nearly two years and I still haven’t heard anything.
In addition, the transition to adult services has felt like a cliff edge.
*name has been changed
Lauretta Ofulue
Specialist nurse in community paediatrics, expert by lived experience and parent carer
We need to ask ourselves: are we really placing a high value on the vulnerable members of our community? That’s where it all stems from. Sometimes, people with learning disabilities are dehumanised in the care that they receive.
The reality is that things are not going well on the ground. A lot of people are receiving a very low level of care. I wish we could imbibe a culture of auditing and monitoring regularly.
For the future, it’s about funding the nurses who look after people with learning disabilities and complex health needs.
Anna White
Sibling carer and advocate
Labour’s like every other government. They promise changes while campaigning to be in power and then, once they’re in power, back-pedal as fast as they can.
Every service designed for the care of people with learning disabilities and or autism should: one, have a person with lived experience; two, have a parent or sibling with a lived experience of care; and three, have a healthcare professional such as a learning disability nurse with first-hand experience. There also needs to be an overhaul of the appalling levels of care and abuse that still take place in institutions.
Viki Ainsworth
Parent advocate and expert by lived experience
Not a lot’s changed in the year Labour has been in. We were hoping for more, faster. Some acknowledgement around our world would have been nice.
We’ve been forgotten. We’re the easiest community to just let drop off the end of the food chain. For all the talk around inclusivity and community living, it doesn’t translate into the practical implementation of things.
We need a minister for learning disabilities. We need a paradigm shift. The message needs to be “let’s help the people who really need it”.
Casey Doherty
Policy analyst, Disability Justice Initiative, Center for American Progress
We wrote a report called The Trump Administration’s War on Disability. A line we use is: “History will show the first six months of the second Trump administration as an all-out war against disabled people.”
One of the most concerning recent actions is the executive order Ending Crime and Disorder on America’s Streets. That’s rung a huge alarm bell in the disability community. What’s going to happen is anyone deviating from some norm will be targeted.
Zoltan Boka
Disability advocate
The push for institutionalisation, the imprisonment and the disappearance of an ever-expanding list of so-called undesirables is an urgent problem. The grand vision seems to be to defund everything and throw the undesirables in camps.
Matthew O’Connell
Clinical social work associate and fellow, Oregon Health and Science University
I feel very fortunate to be in a professional role while also having a disability and take it upon myself to help others and use my lived experience in professional spaces.
What we’re really talking about is access to the community but also the contributions that people with intellectual and developmental disabilities make to that community.
We still see gaps in health outcomes. All these health disparities are still there because, in our society, the infrastructure isn’t there. The reality is that people’s lives depend on these programmes.
Carole Rosen
Advocate and expert by lived experience
When a fragile system supports people with disabilities, it’s even more fragile when you have a child with very high support needs.
The overarching issues are what’s going on with the budget and cuts to Medicaid. Medicaid’s a lifeline for people and for families like mine, just to tether my daughter to life in the community versus a congregant setting with the level of support she needs. What people don’t realise is that Medicaid pays for a lot of different services.
Jessica Huang
Student and disability advocate
I want young people to have support when they get older and to have people who consider them as humans rather than just a diagnosis.
I fear that if the administration makes all these cuts to Medicaid, the teams taking care of us are going to have less bandwidth and fewer resources to do what they do.
I’ve had to work for all my opportunities – and to think that cuts are going to happen when I’m supposed to go and make my mark on the world? It’s pretty scary – it feels like we’re going backwards.
Bridger Reed-Lewis
University disability adviser and trainer
Trump has been using his platform to cut everything. The biggest thing I’ve seen with the One Big Beautiful Bill is work requirements for Medicaid. I’m worried. The executive order really concerns me too. It says a lot about this administration and how backwards they are. They don’t care about us. It’s frustrating. It’s very disheartening. I’m also frightened,
I’ll be honest: if I got offered a job around disability that allowed me to be remote 100% at any time, if they didn’t care if I were in the US, I’d be out of here in a heartbeat.
Mitchel Baum
Co-chair, New Jersey Chapter, National Council on Severe Autism, and parent advocate
The biggest issue is change in the budget. We don’t know what it means yet. There are a lot of scary things on the horizon – what we hear from our members is that we don’t have a lot of firm answers yet.
For our community, our family members on a good day barely have their heads above water, so people hope it gets better but there’s also a lot of fear about what’s going to change. It’s incredibly destabilising.
We have members who are afraid, because of the executive order, that if they bring their adult child to the park and they have a meltdown, that child can get carted away. Are those fears grounded? I hope not.
