Celebrating International Day of Persons with Disabilities! 

Today, December 3rd, 2025, SMA UK is marking this important day by sharing how, through collaboration with our partners, we are working hard to make social care better for adults living with SMA in the UK.  

Our promise is simple: to make sure everyone with Spinal Muscular Atrophy (SMA) gets the best care and can live life without barriers. We believe the voices of people who use care must be heard when making big decisions. 

Our Ideas Go to the Top: The Casey Commission 

The UK government has set up a working group called the Independent Commission on Adult Social Care, led by Baroness Louise Casey. Their job is to plan a new National Care Service. 

SMA UK has made an official submission to this Commission, making sure the needs of the SMA community are included. This submission included a link to our Adult Perspectives report.  

What’s Wrong with the System Now? (Why we need change) 

We told the Commission about the things that are not working well and that waste time and money: 

• Long Delays: People wait far too long for assessments and reviews of their care. Sometimes, local councils make people have unnecessary re-assessments even when their needs remain unchanged.  This delays essential care and puts huge stress on families. 

• Poor Care Quality: There are not enough experienced carers, which means the quality of care is often inconsistent. This forces family members to step in as carers, which may be detrimental to the carers health and putting a stain on family relationships.  

• Wasting Time and Money: The system is confusing! Different professionals (physio and occupational therapist) often visit separately to gather the same information. This ‘duplication’ is a huge waste of time and can delay urgent care packages for weeks. 

• Constant Fighting: Frequent reviews of care packages can result in reductions in care provision.  This can force people to spend months or even years challenging the decision. This wastes time and energy, which should be forced on maintaining independence and ensuring the best care and support package is delivered.  

• No Consistent Knowledge: For many, there is an inconsistency in the professionals they see, for example a new social worker is assigned for every review.  This does not allow for relationship building and a greater understanding /knowledge of the individual’s need to be gained, they find themselves repeating and sharing their situation time and time again.   

Our Ideas for a Better Future (What Works Well) 

We also told the Commission about new ideas that we think would make the system fairer and more effective: 

• Quick Complaint Teams: Having special teams to handle complaints quickly, often using virtual meetings, shows a clear commitment to quality. When things go wrong, a senior worker (the Principal Social Worker) can use the complaint to immediately teach the staff and fix the practice. 

• Checking the Changes: A new idea is to make sure that when a complaint is fixed, someone checks again 90 days later to make sure the change has really happened and is working. This is called a Practice Improvement Cycle (PIC) and moves the focus from just closing a case to getting a real result for the person. 

• Using Video Meetings: Using secure video calls for things like care planning and reviews makes it easier and faster for people to take part, reducing waiting times. 

Adult Social Care Workshop: Exploring system interactions and funding flows 

The day before International Day of Persons with Disabilities on Tuesday, December 2nd, SMA UK attended an important workshop to talk about how different support systems, like health, benefits, and care, work together (or don’t!). 

This workshop, held at the Local Government Association, helped us all see the complex map of interactions that people face every day. 

We looked at real-life stories to find out where the systems become confusing, create extra work, or cost more than they need to. 

For example, we discussed the story of a woman who needs care and manages a Direct Payment (DP). This gives her great control over her life. But we highlighted that she is constantly burdened by the paperwork (payroll, rotas, timesheets) and lives with a “persistent fear of sudden changes” to her support or benefits. 

By sharing our experiences in the room, we helped policy makers understand the need to make these systems more efficient and easier for people to use. 

Our Commitment to You 

On this International Day of Persons with Disabilities, SMA UK is stronger than ever in our commitment to change. We will keep working closely with the Casey Commission and other groups to make sure the UK’s social care system is designed for you—not against you. 

Click below to read: 

SMA UK’s full submission to the Casey Commission. 

Thank you for being part of this important fight for a better future!