In the summer, the government published Shaping Future Support: The Health and Disability Green Paper which sets out proposals on how the Government can help people to live more independently, including support to start, stay and succeed in work and ways to improve the experience people have of the benefits system.
On 4th October the NNPCF facilitated a Green Paper consultation event with representatives from the DWP Policy Group Disability and Housing Support unit to and members of parent carer forums.
The event focussed on:
- DLA to PIP transition
- The PIP assessment process and collection of evidence
- Employment and Health discussions.
Parent representatives raised several key issues that we want to make sure the DWP considers through the consultation process including:
- Seeing your SEND teenager becoming an adult is an particularly anxious and challenging time which needs careful preparation and planning. This can be overwhelming for young people and their families.
- We know our children best. Listen to our voices and value the evidence we provide.
- Guidance is required for families around Mental Capacity in terms of who should complete the PIP application form – their young person or the parent carer?
- Some young people say NO and refuse to apply for PIP because they think they do not need support (when they do) or do not want to be ‘different’.
- The current assessment process is inconsistent and stressful. The administration is crippling on top of our caring roles. Assessments have a huge impact on people’s lives.
- Assessments are too rigid. Conditions can vary daily, depending on the environment or individual needs/circumstances. Some conditions will change over time.
- Descriptors need to allow for the support that a young person may need to carry out everyday tasks and whether this skill is transferable.
- Training is required for assessors and decision makers in order understand our lived experiences and impact of the disability on each young person.
- Please do not ask us to have to repeat our stories. Please stop reassessments for young people with severe/complex needs and lifelong conditions.
- DWP should make use of other information and evidence that is available. This information needs to reflect the current needs of the young person and the impact on their ability to carry out day to day tasks.
- Seeking additional health evidence at the current time is not realistic. Families do not want to have to pay for these reports.
- Please ensure that employment support is targeted to the right people, at the right time and in the right way.
- There needs to be more confidence and trust in the system. As young people are supported into work and benefits are reduced, there needs to be process in place should the employment break down.
The NNPCF would like the DWP to:
- Consider the different types of needs and what evidence would be appropriate to be submit for each condition.
- ‘Walk along side families’ and assess our children and young people over time. Only ask families to provide missing evidence rather than repeat our stories.
- Work with other government departments to understand the range of potential evidence that is available e.g. DLA assessments, EHC Plans, Care plans, Health Care Plans (whilst recognising the variation in quality and specific purpose of these).
- Ensure that the proposals set out in the Green paper will enable our young people to reach their potential and support better life outcomes.
- Ensure that evidence submitted by the parent carer is weighted equally with evidence submitted by professionals by the decision maker.
- Ensure that all professionals involved in the assessment process are aware of neuro diverse conditions as well as physical conditions.
The NNPCF will be submitting a response to the consultation which closes on 11th October 2021 and we would encourage parent carers and forums to also respond.