RSN Greater London September Notes

Updates from the Disability Unit (NOTE: these are in their words)

The Timms Review steering group is keen to discuss their emerging recommendations with you and would value your insight as they test and refine them. DWP are looking to organise a session on 1 October, 1.30-3pm, for this discussion with RSN Chairs and an invite will come from DWP shortly. It will be attended by some members of the Timms Review steering group, alongside a few DWP officials who will support the logistics of the meeting. DWP will share more information about the emerging recommendations before the meeting.

This session will allow all RSN Chairs to feed in and is separate to the other, longer 'Shaping Recommendations' workshops with the public that some of you or your members may have applied to be part of.

Meeting summaries from Ministerial meetings with the RSN Chairs were published:

https://www.gov.uk/government/publications/disability-unit-regional-stakeholder-network-meeting-summaries

The next RSN Chairs and DU meeting is 23 September - we have lots to cover as we should be having two guest speakers (including from the Law Commission on transport accessiblity) and to get your initial high levels thoughts on the Access to Work theme please (DWP officials will also be attending). The Minister's Office should also be sending out the invite for October for you to feedback on this theme too please. Just a reminder that on this occasion though, the detailed written feedback would ideally follow by 25 September please so DWP can have this sooner.

This is the press release after the Prime Minister announced today (18 August) that the government will lift time restrictions on concessionary bus passes. From 1 April 2027, people who hold a disabled bus pass can travel on buses for free, no matter the time of day. www.gov.uk/government/news/free-bus-travel-247-for-disabled-people-as-prime-minister-takes-further-action-to-ease-cost-of-living

The Disability Unit is looking into how the RSN can engage on the Casey Commission social care Big Conversation.

Please also find an update from DWP on the query around the reasons why some people have had their PIP reviews extended by 3 years, and the impact on things like Blue Badges:

Since 6 April 2026 we have reduced the frequency of repeated reviews in PIP. For most claimants over 25, their first review will be a minimum of 3 years and, assuming they remain entitled, 5 years for their next review. We want to ensure claimants receive the right level of award while at the same time reducing unnecessary award reviews. This will make the system far more efficient and remove unnecessary pressure from disabled claimants whose needs rarely change at each review. Reducing the frequency of PIP award reviews will enable us to increase the number of WCA reassessments and the proportion of PIP/WCA health assessments conducted face-to-face.
Blue Badge is a devolved matter, but for DfT in England.

Please also find an update from DWP on the query around sole traders and Disability Confident reform:

Testing of initial thinking is expected to conclude late Summer, with findings anticipated in late Autumn 2026.
Development of the new Small and Medium Employer (SME) pathway continues, with testing of selected products currently underway.
Existing members will be informed in advance of any changes, enhancements or new elements introduced to the scheme. We are currently considering implementation approaches and, where appropriate, transition arrangements to support members through any changes.

Find some recently published foresight research (a report by the National Centre for Social Research on how the needs and experiences of disabled people will evolve over the next 5, 10 and 20 years):www.gov.uk/government/publications/disability-foresight-research-future-trends-for-disabled-people

RSN Greater London and Other Updates

The Greater London Assembly (GLA) are launching their Action Plan for Disability on Thursday. They have shared an exec summary ahead of time. Headlines are:

Poverty

Work with Disabled Londoners to ensure their voices inform the Mayor’s response to government decisions on disability benefits and income-related issues.
Pilot improvements to accessible advice provision to better integrate the needs of Disabled Londoners in the GLA’s financial hardship programme design and delivery, including by delivering training to staff, venue descriptions for locations with funded advice services and including Disabled Londoners in programme governance structures.
Improve benefit take-up through its income maximisation programme, including a pilot to focus on uptake of disability benefits.

Policing and Safety

Pilot new, more safe and appropriate ways for Disabled Londoners to report crime and improve victim support for Disabled Londoners, this includes working with Disabled victims of crime and exploring ways to simplify reporting.
Embed lived experience in decision making within MOPAC’s oversight and scrutiny of the MPS, including through co-production and advisory groups, and disability hate crime and leadership training.
Work with the London Fire Brigade and local authorities to ensure safe evacuation routes and appropriate support for Disabled Londoners during emergencies.

Housing and Planning

Focus on accessibility throughout the development of the London Plan.
Provide funding to increase the provision of accessible, safe and high-quality accommodation-based support for Disabled survivors of domestic abuse.
Work to ensure that high-quality data is available to partners working on housing access for Disabled Londoners, including through introducing processes to maintain higher quality data moving forward.
Support partners, including boroughs and housing providers, to better understand and meet accessible housing needs of their communities and use available data to inform decision-making and accountability.
Work to improve access to suitable homes across different tenures and better embed lived experience in decision making

Transport

Work to improve uptake of concessionary travel options for Disabled Londoners
Work with partners to ensure Disabled Londoners are engaged in improvements to Taxicard
Work to improve training for frontline staff and ensure they better understand and can meet the needs of Disabled Londoners.

Employment and Skills

Increase our work to tackle employment barriers by embedding lived experience voices in employment support programmes, including through testing new approaches to integrated employment support and embedding lived experiences through employment support programmes
Help create more accessible and inclusive workplaces and continue to learn about the importance of intersectional approaches.
Work to improve access to GLA-funded skills provision and to support increasing Disabled Londoners awareness of available services and identifying the most appropriate services for them.

GLA Ways of Working

Strengthen its engagement with Disabled Londoners including by strengthening the DDPO Forum and embedding more consistent feedback loops, appointing a lived experience co-chair to the forum, and appointing GLA disability commissioners to provide additional resources to support the delivery of the Action Plan.
Strengthen accessibility of GLA services and events and work to ensure that staff will be able to understand the needs of Disabled people and facilitate their involvement.
Strengthen access to relevant GLA programmes including grant funding and procurement processes.

Agenda and Actions

1. Any questions of information to follow up on the updates above?

There's no problem to bring them up in your own time later on, via email or online here.

2. Any further views on Access To Work for the next Minister meeting?

Etherpad Link

3. What would be your top 3 themes to share to the Disability Unit?

We had a few such as:

Meeting Summary (note this is AI-generated by Zoom, so there will be mistakes!)

Key Outcomes

The meeting surfaced deep, systemic failures across PIP assessments, Access to Work administration, social care funding, and carer recognition. Members shared firsthand accounts of benefit misuse by local authorities, chronic delays and rule changes in Access to Work reimbursements, and the near-total absence of support for unpaid family carers. The group aligned on priority themes to bring to upcoming minister and disability unit meetings, including PIP reform, Access to Work flexibility, transport accessibility, employment pathways, and carers policy. Marc will represent these views at a PIP steering group meeting on 1 October and a disability unit meeting on 23 September.

PIP Reform & Assessment Failures

Separation of assessors from DWP: Penelope clarified that PIP assessors are entirely separate from DWP PIP staff — a distinction that matters because the failures are concentrated in the outsourced assessment layer, not the DWP caseworkers. 12
Assessment incompetence documented: Penelope's own assessment was marred by the assessor forgetting to tape the session, failing to ask required questions, and conducting a session lasting over 90 minutes with significant omissions; she appealed but did not ultimately need to proceed. 2
Positive DWP caseworker experience: Despite the poor assessment, the DWP PIP staff responded with empathy when Penelope was overwhelmed by caring responsibilities, extending her review by a year — cited as evidence that ground-level DWP staff can be supportive. 2
Assessor training gap on non-visible conditions: Marc noted that earlier RSN research had already flagged poor assessor training on non-visible disabilities and neurodivergence as a major recurring theme. 3
Review frequency confusion: Members flagged widespread confusion about why some PIP reviews are triggered more frequently than others and what the legal or policy basis for that is — identified as a priority question to raise. 14
PIP steering group meeting — 1 October: Marc will attend a meeting with DWP and the TIMS review steering group to hear emerging recommendations on PIP reform; he will share those recommendations with the group beforehand to allow collective feedback. 5
Workshop scale concern: Jax raised that only 300 people have been invited to PIP reform workshops despite 4 million people being on PIP, and reports suggest Stephen Timms may have already formed his conclusions. 6
Voucher scheme risk: Concern raised that converting PIP into a voucher scheme could have cascading effects on social care financial assessments, particularly regarding the daily living component currently used in means testing. 6

Local Authority Benefit Clawback & Financial Assessment

PIP daily living component misused in means testing: Local authorities routinely treat the PIP daily living amount as income in financial assessments, despite it being intended to offset the extra cost of disability — described as fundamentally misrepresenting the benefit's purpose. 7
Disability-Related Expenses (DREs) inconsistency: Councils vary widely in what they allow as DREs, with some using fixed amounts for utilities regardless of actual costs; assessments are reportedly spread over 3–5 years rather than reviewed annually. 7
Universal Credit grab: Marc described Greenwich Council attempting to take almost all of his daughter's Universal Credit, with DREs being the only buffer — and the council initially unaware that the Motability scheme had already absorbed the mobility component. 89
Residential care impact: Once in residential care, the daily living component of PIP ceases entirely; Marc's daughter has been in residential care for 4–5 years and no longer receives it. 8
Inter-council inconsistency as a systemic problem: The lack of unified national standards means outcomes are determined largely by which council a person falls under and the council's own financial pressures. 910
Section 117 funding abuse (serious mental illness): Penelope detailed a pattern where local authorities divert people who are entitled to uncapped Section 117 post-detention funding into homeless hostels instead of proper clinical supported living, then charge them PIP and Universal Credit toward that accommodation — a direct breach of the Mental Health Act. 1112
Key ask: PIP should not be conflated with general income; its purpose as a disability cost-offset must be legally protected and ring-fenced from council financial assessments. 10

Access to Work: Systemic Failures

Outstanding invoices crisis: An interpreter agency for the Deaf reported over 150 outstanding bills from Access to Work, forcing them to hire a dedicated staff member solely to chase payments — an additional cost on top of the funding shortfall. 1314
Employer deterrence: Companies are declining to engage with Access to Work for their disabled staff because upfront costs and reimbursement delays make it financially unviable; this directly affects hiring decisions for disabled candidates. 14
Claim rejection surge: Michele reported a dramatic increase in Access to Work claims being rejected, requiring claimants to repeatedly chase and appeal — a particular burden for disabled people who already have significant demands on their time and energy. 15
Rule changes without notice: Fiona disclosed that DWP changed the documentation requirements for claims without informing claimants, deliberately enabling a wave of rejections to improve cash flow; audits have also become significantly more forensic. 16
Fraud justification disproportionate: Fiona noted that actual fraud in Access to Work is negligible relative to the economic contribution of the disabled workforce; the clampdown is not proportionate. 16
Tapering support for neurodivergent workers: Richie raised that Access to Work treats neurodivergence as a temporary condition by tapering support over time, which contradicts its lifelong nature; this is especially problematic when job roles change, managers change, or projects shift — all of which create friction points requiring renewed support. 1718
Inflexible hour allocation: Richie described cases where Access to Work queried why hours were not used evenly, despite the rationale that neurodivergent employees may need intensive support at the start of a role and during transitions, not uniformly across weeks. 1819
Workarounds exist but are coach-dependent: Marc noted that experienced neurodivergent business coaches know how to invoice and log hours in ways that satisfy Access to Work while actually delivering flexible support — but this knowledge is not standardised and not universally accessible. 20
Shift from ongoing to fixed-term support: Marc observed a reported trend away from ongoing support (e.g., virtual admin) toward time-limited coaching, driven by cost — undermining long-term needs. 3

Employment, Education & Post-School Transitions

Cliff-edge after education: Richie's research (supported by Jax) found that young disabled people face a complete drop-off in employment support once they leave education, with no structured guidance or transition planning. 21
EHCP loss at transition: Parents reported children having EHCPs removed at the point of leaving education, only to later encounter services that require an EHCP for access — creating a catch-22. 21
Local offer failures: Local offers are inconsistent, out of date, and largely unknown to families; navigation of employment services post-education is described as broken. 21
Stigma around specialist employment services: Some young people do not want to use specialist disability employment services; the ask is to upskill mainstream employment services to be inclusive by default, rather than requiring disabled people to use separate provisions. 22
Industry bodies not inclusive: Marc cited the British Computing Society (BCS) as an example of an industry body whose certifications and apprenticeships are not designed for neurodivergent people — a gap the BCS neurodivergent group is actively pushing to close. 23
Pathways to Work Innovation Fund: DWP has launched this fund following Pat McFadden roundtables; Marc will attend an explanatory workshop the following week and will share the registration link with members. 2425
EHCP ceased = reassessment trigger: Marc is pursuing a care reassessment for his daughter following cessation of her EHCP (end of education), arguing that a milestone assessment is required under the Care Act regardless of elapsed time. 26

Carers: Recognition, Pay & System Failures

Carers systematically excluded: Penelope flagged that carers are largely absent from disability policy frameworks and adult social care structures — unsupported, untrained, and vulnerable to exploitation in terms of time and labour. 2728
Family assumed to absorb care for free: Jax described social services readily assuming family members will provide care unpaid while simultaneously paying profit-making agencies £1,440/week (£75,000/year) for care that is not being delivered as allocated. 29
Luke's case — 42 hours allocated, not delivered: Jax's son Luke is allocated 42 hours of care per week in Brighton; his social activities are still organised by Jax, his GP and neurology consultant remain in Croydon, and 7 hours were removed without notice or a revised care plan — six weeks of silence from social services despite escalation. 293031
Provider locked in via block contract: Luke's current provider comes as part of a block contract covering three flats; Jax has a new provider and flat lined up but cannot proceed until Croydon social services respond — while the current provider continues to receive over £1,500/week. 31
Belittlement of family carers in professional settings: Jax recounted a friend being addressed dismissively as "mum" at a CHC meeting after 27 years of caring for a daughter with tumours and epilepsy; her input was disregarded entirely. 32
Michele's experience — sole carer for father with dementia: Michele is sole carer for her father, has had to go self-employed and work part-time, earning only £4K since April; she had no say in the care agency allocated, has experienced dangerous and incompetent carers, and is routinely held to ransom by agencies who treat her as a burden rather than a paying client. 333435
Zero-hours contracts driving carer shortage: Agency carers are on zero-hours contracts, receive no sick pay, and earn minimum wage — making recruitment and retention nearly impossible; agencies consequently keep unsuitable or potentially dangerous staff because they have no alternatives. 35
Community care = unpaid volunteering by default: Penelope warned that plans to move people out of hospitals into the community (discussed in relation to PPL) will in practice mean more people are forced into unpaid caring roles; the RSN should get ahead of this policy direction. 36
Deputyship and LPA burden: Both Marc and Jax highlighted the administrative and financial complexity of deputyship — Marc has a first quarterly protection report due, Jax is navigating a financial reassessment following her son's migration to Universal Credit, with the council now seeking to claw back transitional payments and everything above the MIG. 263738

Transport & Physical Accessibility

Taxi card unreliable: Fiona stated that most disabled people she knows do not use the taxi card because the associated taxi company is so unreliable that it renders the benefit unusable for time-sensitive journeys. 39
Waymo (driverless taxis) not wheelchair accessible: Jax raised whether Waymo driverless taxis are disability-friendly; Fiona confirmed they are not — wheelchair users cannot board. 40
Black cab booking improvements: Jax noted that black cabs have improved their booking technology and can now be pre-booked similarly to Uber, but this was not the case when taxi cards were first introduced. 40
Transport as a prerequisite: Fiona emphasised that accessible transport and built environment must be resolved before any other participation goals are achievable; she is involved in the forum feeding into the London GLA disability action plan. 41
GLA London Disability Action Plan: Launching Thursday; covers poverty, policing and safety, housing and planning, transport, employment and skills, and GLA internal services. Marc has an embargoed executive summary and was hoping Kush would attend in his place due to a scheduling conflict. 4243
Supported living housing stock unknown: Marc noted that councils lack accurate data on what supported living stock exists — a problem identified years ago that remains unresolved and relevant to both housing and clinical care planning. 4344

Upcoming Meetings & Governance

PIP Steering Group — 1 October: Marc attending; emerging recommendations will be shared with the group before the meeting for collective input. 545
Disability Unit Monthly Meeting — 23 September: Includes guest speakers on transport; Marc will share high-level Access to Work views gathered from the group as a preview ahead of the minister meeting. 4546
Minister Meeting (upcoming): Access to Work is the confirmed theme; the group's lived experience inputs from this session will inform Marc's representation. 47
Top 3 themes for future minister meetings: Members were asked to nominate priority themes; discussion surfaced: social care, transport and physical access, employment and post-education transitions, carers, and mental health/SMI-specific issues. 212748
Casey Commission on Social Care: Marc flagged a missed email about RSN engagement opportunities on the Casey Commission's "big conversation" on social care; he will raise this at the 23 September disability unit meeting. 4
Bus pass / Freedom Pass: Time restrictions on off-peak-only travel are being removed for Freedom Pass holders in London — noted as a positive development relevant to members. 46
Zoom platform issue: Marc recently migrated from Google to Proton Calendar (citing privacy and security), which left residual old Zoom meeting links active, causing Richie to join the wrong call; acknowledged and to be resolved. 49

Action Items

Marc: Attend PIP steering group meeting on 1 October; share emerging recommendations with the group beforehand for collective review. 5
Marc: Attend disability unit monthly meeting on 23 September; raise Access to Work themes, Casey Commission engagement, and bus pass updates. 445
Marc: Send the Pathways to Work Innovation Fund registration link to all members; attend DWP explanatory workshop the following week and report back. 25
Marc: Share Zoom AI-generated meeting notes with all attendees following this session. 50
Marc: Chase his daughter's care reassessment following EHCP cessation under the Care Act milestone trigger. 26
Marc: Complete first quarterly deputyship protection report (due 10 September). 3738
Marc: Follow up on GLA London Disability Action Plan launch (Thursday); confirm whether Kush attended and obtain full plan details. 4243
Richie: Register for the Pathways to Work Innovation Fund workshop once Marc shares the link. 25
Jax: Submit letter to Croydon social services explaining the financial reassessment context for Luke's UC migration and challenging the clawback of transitional payments. 3851
All members: Provide Marc with their top 3 priority themes for future minister meetings to inform the disability unit's agenda-setting. 47