Is Down Syndrome bill missing something?

[Galwaybay2]

Is it just me? Of course it is fantastic that Liam Fox's bill is proceeding unopposed to alert professionals to the specific needs of those with Down Syndrome, but isn't there a glaring ommision? What about all the others who have specific needs? Some of them will also have chromosomal differences and some not and those are often harder to categorise and define. It is so hard to say this without it sounding wrong, but there seems to be an acceptable face of learning disabilities and a divide within a group who all have to fight to get needs met. DS has a powerful lobby and that is great but do we all now have to fit into neat groups and get a special bill passed for us or could Liam Fox have included those already marginalised.

[Galwaybay2]

...Mencap, what are your thoughts on this?

[SpeedyH]

Galwaybay2. It is I who posted without spotting your post first, not the other way around! Great minds and all that...! I absolutely agree with all you say and you put it so much better than I did. As an extension to what you say, there is huge discrimination and exclusion within the Down’s syndrome population too - the Bill and the MPs glaringly ignored those with Down’s syndrome who have profound and complex needs and they also only paid lip service to adults. It is estimated that at least 20% and probably more people with DS have profound LD, complex needs or Autism. The families outside Parliament were absolutely not representative of the whole DS population. An MP on the radio this morning said that most people with DS have a mild to moderate learning disability which is what makes them a special group. This is the kind of misinformation which is being perpetuated. The numbers of people with only a mild LD are tiny. It has been very useful to see what the big charities have had to say about the Bill - Mencap have not supported the interests of their members at all and have plummeted in lots of people’s estimation as a result. The Down’s syndrome Association weren’t even consulted and state they support any legislation that makes life better for all people with disabilities. Hopefully Mencap will bother to make a statement at some point. 🤷‍♀️

[Galwaybay2 in reply to SpeedyH]

And the fight goes on..and on

[oakvill]

Great post. I find that having only a generic diagnosis of Learning Disability/Intellectual Disability/Global Developmental Delay - or whatever term is used - has been a barrier for my daughter to access support. For those having a diagnosis of Autism or DS, large communities of families are able to band together to lobby for services specific to their needs, and others that would benefit from these services end up being excluded. This ends up being a divisive situation for the disabled community as a whole, as the access to funding / help is clearly given to those who shout the loudest.

[Galwaybay2 in reply to oakvill]

No-one wants a label but sometimes they give a tidy shorthand so that a load of generalisations and assumptions can be applied to a group. In other areas of life it is considered discrimination to not see people as individuals, but not here apparently. It seems those with learning disabilities need to find a tribe, a grouping, some special way for institutions on which they depend, to invest in their care. Life and wellbeing depends on such legal recognition for all who have learning disabilities and autism when it comes to accessing appropriate community links and education, but in healthcare it is literally vital. This bill implicitly suggests that those who do not have DS will have to remain dependant on others, who may not be trained to understand their specific needs, in sometimes life or death situations. Maybe some are just more equal than others.

[oddfish7]

I so agree with you - it seems to be a feature of the LD world that specific 'interest groups' such as DS and Autism are able to advocate strongly for their case, but general LD is almost never at the centre of campaigns. I've seen that being deaf, for example, alongside having some LD ,is not enough to get any particular help from the 'deafness services'. I do wonder where MENCAP is in this. It seems that general LD is always last in line for any resources.