SMA UK’s response to the government’s "Pathways to Work" consultation highlights key recommendations for reforming the Personal Independence Payment (PIP) system and broader DWP support, focusing on the experiences of individuals with Spinal Muscular Atrophy and other disabilities. 

Key Recommendations from SMA UK’s Response: 

• PIP Assessment Philosophy: 

• Assessments should focus on the functional impact of a condition on daily life, not just the diagnosis, recognising that conditions like SMA vary widely even with treatment. 

• Assessments should be thorough and combine insights from various healthcare professionals. 

• Streamlining Assessments and Reviews: 

• Advocates against repeated PIP reviews for individuals with lifelong or progressively deteriorating conditions to reduce stress and administrative burden. 

• Proposes expanding a "Severe Disability Group" for indefinite awards, increasing reliance on initial healthcare professional evidence, and implementing a risk-based review system. 

• Medical Evidence and NHS Impact: 

• Supports formal diagnosis as a requirement but emphasises a holistic approach based on functional impact. 

• Suggests prioritising self-reported evidence and utilising existing medical records to reduce the burden on the NHS. 

• Assessing Diverse Conditions: 

• Recommends a nuanced approach for fluctuating or treatable conditions, focusing on long-term functional impact. 

• Eligibility should be based on "current functional impact," with reviews only if new treatments significantly alter functional ability. 

• Cost Indicators: 

• Highlights the need for aids, appliances, and prompting as strong indicators of ongoing disability-related costs, including both direct and indirect expenses. 

• Cumulative Impact of Needs: 

• Argues that accumulating low points across multiple activities can incur similar or greater costs than scoring highly in a few areas, emphasising the overall burden of minor difficulties. 

• PIP Activities: 

• Cautions against merging PIP activities due to potential oversimplification and reduced support. 

• Suggests rewriting some descriptors to better reflect lived experience (pain, fatigue, mental effort) and proposes adding new activities like "Managing Digital Communication and Online Services" to capture modern challenges. Any changes must be co-produced with disabled people. 

• Alignment with Local Services: 

• Expresses caution about aligning PIP with local authority and NHS services, warning of a "postcode lottery" without massive, sustained, ring-fenced funding and the preservation of non-means-tested support. 

Broader DWP Support Recommendations (Chapter 2): 

• Supporting People to Try Work: Strengthen the "Right to Try" Guarantee, provide clear information on benefit impacts, automate systems, increase Universal Credit Work Allowances, and reform the taper rate. Emphasise enhanced in-work support and accessible employment programs like Access to Work, ensuring protection of Carer’s Allowance during PIP reassessments. 

• Support for Those Losing PIP Entitlement: Implement robust financial safety nets including transitional protection, increased Universal Credit standard allowance, targeted disability premiums, and emergency hardship funds. Calls for enhanced information, advice, advocacy, dedicated DWP staff, and strengthened local social care. 

• Improving Health and Care System Experience: Advocate for proactive needs assessments by local authorities and NHS (with adequate funding), preventative care, streamlined access to social care, and enhanced mental health support. 

• Introducing a New Unemployment Insurance (UI): Proposes a contributory, earnings-related, and initially non-means-tested UI scheme with clear eligibility and swift payments. Suggests an initial duration of 3-6 months, extendable in specific circumstances, with tailored employment and health support, including a "Right to Try" mechanism. 

• Improving Safeguarding: Advocates for a person-centred "Making Safeguarding Personal" approach that prioritises individual voice, accessible communication, independent advocacy, robust staff training, and multi-agency collaboration. 

• Designing Effective Support Conversations: Emphasises person-centred, individualised, and trauma-informed approaches with accessible communication, active listening, and motivational interviewing by skilled staff. 

• Designing Conversations for Those with Little/No Contact: Proposes an outreach-based approach focused on building trust, offering practical support unconditionally, and ensuring flexible, adaptive communication by skilled and consistent workers. 

Future of Access to Work: 

SMA UK advocates for Access to Work to become a proactive, comprehensive, and widely accessible national service. This includes making it a central enabler of disability employment, a proactive and preventative service, a holistic workplace inclusion partner, a "one-stop shop" for disability employment support, and a champion of good work. The future design should focus on improved accessibility and awareness, simplified and streamlined processes (including dedicated navigators, faster payments, and direct payments to suppliers), holistic and responsive support (expanded scope, preventative measures, flexible transport), and robust data collection for continuous improvement. 

For employers, especially Small and Medium Enterprises, the response suggests simplifying information on reasonable adjustments, increasing awareness and uptake of Access to Work through dedicated employer services, and increasing financial contributions for SMEs to cover adjustment costs. 

Overall, the response urges a more empathetic, realistic, and individually tailored approach to disability benefits that acknowledges the dynamic nature of conditions and focuses on lived experience and functional impact to prevent increased hardship for disabled people.