The campaigners who succeeded in getting the Westminster petition to over 10,000 signatures have had a more detailed response from the Department of Health and Social Care.
The petition was calling for Government action to ensure greater recognition of the PDA profile and the campaigners sent a letter and extensive information to the Department to explain the issues further. Specifically, they were asking for support to get local services to respond to the needs of adults and children whose needs are not being met currently.
The team shared the response from the Department with the PDA Society, so we can pass it on. They have written positively:
“With regard to accessing health and education support, the Department makes it clear that commissioners and services respond to the call to action, as part of ongoing work with NHS England and the Department for Education, to improve the responsiveness health services to the needs of children and young people with special educational needs.The statutory framework for special educational needs is intended to be fundamentally needs-based, and outcomes-focused. Special educational support should not be conditional upon a specific condition, or a specific diagnosis, although obviously the nature of need, and the extent to which special educational provision is provided, may be best indicated by a formal diagnosis.Ministers want health, education and social care to work together to assess what would make a difference to children, and secure the right services, and to recognise that as young people’s needs vary, there must be effective and responsive support for those needs.The Department cannot direct local commissioners or services, but can as part of its oversight role and, in particular, its ongoing discussions with its partners, ensure that there is a very real engagement with these issues.”
Currently there are some families who find that having a diagnosis which mentions the PDA profile means access to services is denied, while others are unable to get a diagnosis, and so services are denied.
Even when services are available, a lack of understanding of the specific needs of young people with a PDA profile means needs are not being met and outcomes are poor as a result.
The support of the Department for Health and Social Care and their statement that “as young people’s needs vary, there must be effective and responsive support for those needs” will be extremely valuable in discussions with Commissioners around the country.
A big thank you to the campaigners on behalf of many hundreds of families: the hard work is paying off.