Parliamentary Investigation into the Transition to Adulthood for Children with CP

Richard_Scope

I wanted to share the latest part of the All-Party Parliamentary Group (APPG) for Cerebral Palsy. This particular investigation covers the transition to adulthood and makes key recommendations.

You can read the report here:

https://connectpa.co.uk/.../The-transition-from-childhood...

If you have any thoughts or comments that you would like me to share, you can reach me through this group or as always, email me at richard.luke@scope.org.uk

L_Volunteer

Thanks for sharing this with us @Richard_Scope. It sounds really interesting and important! 

chantal

Richard_Scope said:

I wanted to share the latest part of the All-Party Parliamentary Group (APPG) for Cerebral Palsy. This particular investigation covers the transition to adulthood and makes key recommendations.

You can read the report here:

https://connectpa.co.uk/.../The-transition-from-childhood...

If you have any thoughts or comments that you would like me to share, you can reach me through this group or as always, email me at richard.luke@scope.org.uk

This report isn't worth the paper it's written on. While it's good they acknowledge failure the fact is that these remarkable people are written off at a young age especially if they are non verbal and there condition is combined with LD. The parents and carers of these beautiful people face nothing more than sheer hell in fighting for them. Once they finish school here that's it there's nothing for them. There is no means of therapy no social support health does not recognise others speak for them critical care stops there life's are written off.

daresbury1978

I have been busy lately studying the feedback document relating to the consultation exercise. I can easily identify with all of the statements about the barriers faced by individuals with cerebral palsy and their carers. It is hard to know what to say apart from that just now but I thought that the feedback from the Scottish (Glaswegian?) disabled peoples' organisation which strongly  emphasises the need to promotes the RIGHTS of disabled people is absolutely key! I also think that the use of the term CARE with regard to the needs of the disabled can undermine rights considerations. It tends to obliterate the reality which is that disabled people have the ability to live independently. With reference to the question about what "independent living" means I want to say that it is not just about types of accommodation but ultimately it is about the right to self determination regardless of what type of physical accommodation you live in. I also think that too much emphasis is given to the importance of the "professionals". I believe that this should be understood as  a modern cultural phenomenon. It is the disabled community that has the real expertise. The professionals have the power but, sadly, all too often lack the real understanding that comes from direct disability lived experience.

forgoodnesssake

Interesting reading.  Can't really argue with the recommendations or the comments made by the range of participants. 

I am however disappointed not to find (but please correct me if I am wrong!) any specific reference to Higher Education (ie University) as a real option for young people with CP, and allied to that, the important fact that EHCPs do not cover HE...irrespective of the complexity of the CP.  I come across this too often and even professionals who should be aware of this, often are not.  But it has huge implications and therefore the recommendations herein must NOT be completely dependent on the EHCP framework (or whatever comes next)

A 19 year old with CP, non independently mobile, AAC user, needs help with all personal care and feeding etc would be entitled to the (theoretically anyway) legal support framework of an EHCP for their health, social care and educational needs if they went to specialist or FE college. 

But if they go to university then all that ends, immediately, and their only health "link" is the GP, and for social care a social worker, if they actually have one (and if they are NHS Continuing healthcare funded they lose all access to SWs as well...)

The other thing about this report which doesn't sit well with me is the prominent inclusion of John Caudwell. 

Yes I know he runs a large charitable foundation and has I'm sure helped improve the lives of a great many disabled children and their families.

However,

1) this very much sits in the "charity" rather than "rights" camp of disability provision

2) his political affiliations back this up

3) having looked more than once at applying the Caudwell Trust I found the questions some of the most intrusive I have ever seen on a grant application; leaving families in a position of virtually begging for support and having to justify every single expenditure they have made.

4) You can only apply for equipment (other than for sport) for under 18s, so I do not understand how he can have a truly important viewpoint on transition to adult services?

daresbury1978

Not for the first time I find myself concerned about the assumption that so much power is handed over to Social Workers who too often, in my experience exercise power rather than good judgement. I think that the power should remain with the disabled community which actually knows from first hand life experience what transition is all about. Disabled advocates should have a central and determining role in the decision making process. I do also support the idea that "transition" should be viewed holistically and as a lifetime process though early years transitional issues may be the most urgent. So much depende on individual circumstances.

L_Volunteer

Thank you everyone for contributing to this thread. Hearing your views, thoughts and experiences are invaluable to the community. 

I can hear how passionate and determined you all are. It is people like you who contribute to change and make this community the wonderful space it is.

If anyone wishes to discuss any points they have raised further, please do not hesitate, we are all here for you and listening to you 

daresbury1978

I also believe that the idea "transition" needs to be considered with a specific and  strong regard for the idea citizenship. Some years ago the disabled academic Jenny Morris wrote a very readable and profound paper relating to this. The title of the paper is 'Citizenship and Disabled People'.  Look it up on line.  Jenny Morris details a whole range of important considerations relating to the issue of disability and citizenship which includes reference to key barriers including “the knowledge monopoly held by professional disability experts” (see Page 29). She introduces her paper with the following quotation Thus: "The Disability Rights Commission (DRC) has recently adopted the following aim:

By 2020 all disabled people should have equal opportunities to participate and contribute as equal citizens in the social, economic, civic and community life of Britain, in ways which are welcomed and valued by other citizens, by social, economic and political institutions and by the wider community."

It is now  almost 2023 and I suspect that for a great many disabled individuals (maybe particularly those in so-called "care homes"?) the prospect of meaningful active citizenship as a factor in their own personal lives is still rather dim. What do you think? The point I want to get across particularly is that although this Parliamentary paper covers a great many important issues its failure to cover the issue of citizenship is potentially a huge and undermining failure.

L_Volunteer

I found your response really insightful. Thank you for sharing it with us @daresbury1978. 

I agree with you about the importance of meaningful active citizenship as a factor in their own personal lives - or at least the opportunity 

daresbury1978

Hi L_Volunteer! Thank you for your kind comments. I think that the "transition" document is perhaps too medical model/welfare dependency orientated (important though the benefits and services aspects are.) My involvement with the CP community has involved my supporting service users in residential settings since the late 1970s  and it concerns me that staff understanding of their position in the community is too narrowly defined e.g. the assumption that their Article 19 Rights are fulfilled if they occasionally get taken to the shops. Citizenship requires (1) social awareness (2) social skills (3) meaningful social involvement  and (4) meaningful social status. Thankfully, and as I may already have mentioned, one increasingly finds individuals with CP fulfilling what the writer Wolfensberger termed "meaningful social roles" e.g. as entertainers, sports personalities, politicians etc ( i.e. as per those involved with the Cerebral Palsy APPG). I wish that there were more personal biographies available on line so that young individuals  with CP and who are in "transition" could access to see for themselves what is achievable by others with CP i.e. as admirable and inspiring role models. Citizenship should be a clearly defined goal.

daresbury1978

Article 19 – Living independently and being included in the community

 States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

L_Volunteer

I appreciate the point you have raised @daresbury1978 about some things being too based on the medical model but some things needing to be based on the medical model. 

It sounds like you have done some amazing, and rewarding, work supporting service users in residential settings - especially since the 1970s! 

I can really hear how important this is to you. Hopefully, one day this will happen