A Parent’s Perspective: The Impact of Proposed Benefit Changes on Young Disabled Adults

As a parent of a daughter who has Down’s syndrome, I have always strived to ensure my daughter has had the support and opportunities she needs to thrive. However, the recent proposed changes to PIP and Universal Credit for 18-22 year olds has left me deeply concerned about the future of our welfare system and its ability to adequately support Young Disabled adults. The system is meant to support Young Disabled people, but instead, it feels like it’s abandoning them when they need it most. 

Understanding the Proposed Changes 

The government has announced several significant modifications to Universal Credit, set to be implemented gradually between 2026 and 2030. These changes are part of broader welfare reforms aimed at reducing long-term benefit dependency and encouraging workforce participation.  

Among these changes, one of the most concerning for families like mine is the proposal to raise the minimum age for receiving the Universal Credit health top-up from 18 to 22 years, which could affect approximately 66,000 Young people and their families. This adjustment aims to promote employment and education among Younger adults, but it overlooks the unique challenges faced by Learning Disabled Young People, for example in securing suitable further education provision or the lack of employment opportunities available. Further changes include a reduction in the weekly payment for new claimants of the health element of Universal Credit from £97 to £50 (those already receiving this health element will have it frozen, so it will not increase with inflation and rising costs). 

In addition to changes to Universal Credit, there are proposed changes to PIP eligibility, with claimants needing to score a minimum of four points in one daily living activity to qualify for the daily living component of PIP. Fewer people will be eligible for PIP, meaning fewer carers will be eligible for Carer’s Allowance. The government also plans to remove the Work Capability Assessment, merging it with the assessment used for Personal Independence Payment (PIP). Instead of assessing whether someone is fit to work, financial support will be determined by a single assessment under Personal Independence Payment (PIP), focusing on how a disability affects daily living rather than work capability. 

“We are already struggling to cover the extra heating bills, higher food bills to meet dietary needs and transport to college, which on its own costs us nearly £1,600 a year. I cannot work full time because I need to be here before and after college and in the holidays. Without PIP, we will be left scrambling to cover costs we simply can’t afford.” 

Combined, these benefits proposals are likely to offer several incredibly significant challenges to Young Disabled people and their families. 

The Problems with the Policy Proposals 

The Consequences of Delayed Access to Financial Support for Young Disabled People 

PIP provides financial support to Young Disabled people, helping them gain independence and access education and training. PIP has been a lifeline for many Young people in college and university, by providing financial support for both daily living and mobility needs. Raising the age threshold for the health element of Universal Credit means that Young Disabled people will have to wait longer to receive the financial support they need.  

“The government says they want Disabled people to be independent, yet they’re stripping away the very funding that helps him travel to college, access specialist care, and maintain the little independence we have fought so hard for. I am terrified for his future.” 

Universal Credit is designed to help individuals achieve financial independence and stability. However, the proposed changes create additional barriers for Young Disabled adults who are striving to live with greater choice and independence. Without adequate financial support, many will find it difficult to cover basic living expenses, pursue education and training, or engage in meaningful activities that contribute to their personal growth and development. 

For many Young people, this reduction in income could therefore result in reduced access to necessary support and resources needed to live a fulfilling life based on their own aspirations and choices. Although these proposals are designed to encourage greater engagement in education, training and employment, they might inadvertently prevent Young people from undertaking education or training opportunities that would allow them to follow their interests and to develop new skills and greater independence, as well as meaningful qualifications that are valued in the workplace.  

Increased Financial Hardship 

Once a Young person turns 19, they will need to claim Universal Credit independently, and are no longer included on their parents’ claim, which could result in a drop in household income. If Young Disabled claimants under 22 years old no longer receive the health element of Universal Credit, their personal payments could be £97 per week lower than before. These changes disproportionately affect Disabled Young adults from low-income backgrounds, who already face significant barriers to education, employment, and independence. With fewer financial resources, they are left with fewer choices, fewer opportunities, and a system that forces them into hardship rather than empowerment. 

The reduction in the health element for new claimants from £97 to £50 per week is another troubling aspect of the proposed changes. This significant decrease in benefits will undoubtedly exacerbate the financial difficulties faced by  Young Disabled adults and their families. The government argues that this change is part of a broader strategy to encourage work and reduce long-term benefit dependency, but it overlooks the reality that many Disabled individuals are unable to find suitable work due to a lack of available opportunities and inclusive employers. 

Research suggests that 65% of people with Learning Disabilities, including those with Down’s syndrome, want to work, yet fewer than 20% of those of working age are currently employed. The WorkFit program by the Down’s Syndrome Association (DSA) has successfully placed nearly 1,000 candidates with over 750 employers, demonstrating that with the right support, people who have Down’s syndrome can thrive in the workplace.  

My daughter currently works one day a week for H&M while continuing her studies. This position was obtained through the WorkFit programme two years ago. Working for H&M at weekends has enabled my daughter to showcase her abilities in the workplace. She has gained confidence and is becoming more independent. She has been employed there for two years and will be increasing her hours to two days a week starting this summer, while also participating in a Supported Internship. The college only offered her a place on the Supported Internship course due to her success working for H&M. Previously they thought it was out of her reach.  

However, we know that many Young people have not had the same opportunities that she has had, due to a range of reasons. For example, access to supported employment via the DSA WorkFit programme is only available to people who have Down’s syndrome. Also, not every individual who has Down’s syndrome can work two or more days a week, due to their individual needs. Furthermore, whilst the WorkFit programme works with inclusive employers such as H&M, Hilton, Tesco, and many more, there is still much to be done in terms of ensuring that there are work opportunities that are available and suitable for every Disabled person who can and wants to work. 

Impact on Mental Health and Well-being 

The stress and uncertainty caused by these changes are having a profound impact on the mental health and well-being of Young Disabled people and their parents/carers.  

Financial hardships compound the already challenging circumstances faced by Disabled individuals, as they often require additional resources like specialised equipment, healthcare and therapies, and accessible transportation – all of which come at significant costs. The fear of not being able to meet these needs or falling further into poverty can lead to chronic stress, anxiety, and depression. When this is combined with concerns about changes to the SEND system, which appear to be reducing the rights of Disabled children and Young people to an Inclusive Education, it is a worrying time indeed for many families I have been speaking to. 

A Call for Action and demands for a more Compassionate Policy 

We must act now. To ensure a fair and inclusive welfare system. It is imperative for policymakers to acknowledge and address the distinct needs of Young Disabled people in every reform. Advocacy is key—whether it’s participating in the White Paper consultation or reaching out to your MP, your voice has the power to shape policies that profoundly impact lives. Stand up, speak out, and demand meaningful change. 

While the intention to promote employment and education is commendable, it should not come at the expense of those who require ongoing support. As a parent, I urge the government to reconsider these changes and ensure that Universal Credit continues to provide the necessary assistance to all Disabled adults, regardless of their age. Delayed access to support, increased financial hardship, negative impacts on mental health, and barriers to independence are just a few of the issues that need to be addressed.  

It is my hope that policymakers will listen to the voices of those affected and work towards a more inclusive and compassionate welfare system. Together, we can push for a welfare system that does not abandon Young Disabled people but empowers them to succeed.