Down but not out: why a new law should reach out and embrace everyone
By Rory Coonan

There is a new act of parliament that benefits people with Down’s syndrome. So why grumble? The Down Syndrome Act 2022 (‘the Down Act’) will improve the lives of a group of people with learning disabilities who are entitled to care and support. Surely this would be welcomed by everyone. Unfortunately, this is not so. As with all legislation that helps one group to the detriment of another, the cheers of the former are equalled only by the groans of the latter.  How did this come about? And how long will it be before common sense prevails and everyone with learning disabilities can benefit from a new law which names only one group?

It is perfectly reasonable to ask why, for example, people with PWS (Prader-Willi Syndrome) should not equally benefit from laws in England and Wales under the Down Act.

A football law only for Manchester United would be unjustifiably biased, so why single out a single learning disability?

Since at the genetic level the differences can be described in terms of chromosomal variations, why should the practical, day-to-day needs of one group be singled out by parliament and treated more favourably than the other?  The need for housing with care and support is no different; the need for employment is no different; the need for education is no different.

After all, a new act of parliament drafted to meet the needs of football, and which only privileged Manchester United, would be widely regarded as idiotic.

What does the Down Act say? It orders the Secretary of State to issue guidance to “relevant authorities” [NHS, local councils, commissioners, GPs etc) on the steps it would be appropriate for them to take “to meet the needs of persons with Down syndrome”. ‘Needs’ are not defined. They could be anything but they are expected to focus principally on housing.

This matters because of the widespread shortage of appropriate, affordable and well-designed supported housing for all adults with learning disabilities. The need is significant while the supply is lacking.

The guidance required under the Act has not yet appeared but when it does, what effect will it have?  The law says: “Relevant authorities must have due regard to the guidance in the exercise of their relevant functions.” (For example, when considering supported housing allocations, local councils will inevitably be led to give special consideration (more than “due regard”) to people with Down syndrome because they and no other group is mentioned in the legislation.  A special emphasis has been created and it cannot be ignored.

However, before giving her guidance “the Secretary of State must consult such persons as [she] considers appropriate.” She must publish the guidance and lay it before parliament so we can all read it. She can also review it from time to time. Finally, the act comes into force only when the government decides it should by regulation.

Law-making by chance, not conspiracy

This sounds welcome but the fact that it excludes equally deserving groups is regrettable. How did this exceptionalism come about?

The problem arose because of an arcane British parliamentary procedure by which an apparently random proposal can become the law of the land (In fact the law of England and Wales; the Act does not apply in Scotland.)

The Down Act was not in the government’s manifesto. It arose through a process known as a ‘private member’s Bill.’ This is a lottery. It allows someone’s pet project to become law. Provided it commands sufficient support, the ruling party will not stand in its way. Time will be made for it in the government’s general legislative programme. Competition for Bills to fill the winning ballot slots is intense. All kinds of weird proposals come forward. Few survive.  A winner of the ballot draw, Liam Fox MP, ‘sponsored’ the Down Bill. Naturally, it was supported by those with Down syndrome, by their families and charities. Who could blame them? Objection that the Bill would result in a skewed act of parliament did not result in amendments.

A better Bill would have been more comprehensive and met a greater number of needs.  A better Bill might have been developed by the government because it thought the effort worthwhile, rather than leaving it to chance.  Nor are prospects good for enlarging the scope of the Act. For this to happen, the actions of a public body under the regulations (yet to appear) would have to be challenged under judicial review by someone with ‘standing’ (ie not just anyone at random). It could take years for such a case to arise. The Down Act 2022 is the result of government legislation by national lottery.  It’s lucky for some.

Down but not out: why a new law should reach out and embrace everyone
By Rory Coonan

There is a new act of parliament that benefits people with Down’s syndrome. So why grumble? The Down Syndrome Act 2022 (‘the Down Act’) will improve the lives of a group of people with learning disabilities who are entitled to care and support. Surely this would be welcomed by everyone. Unfortunately, this is not so. As with all legislation that helps one group to the detriment of another, the cheers of the former are equalled only by the groans of the latter.  How did this come about? And how long will it be before common sense prevails and everyone with learning disabilities can benefit from a new law which names only one group?

It is perfectly reasonable to ask why, for example, people with PWS (Prader-Willi Syndrome) should not equally benefit from laws in England and Wales under the Down Act.

A football law only for Manchester United would be unjustifiably biased, so why single out a single learning disability?

Since at the genetic level the differences can be described in terms of chromosomal variations, why should the practical, day-to-day needs of one group be singled out by parliament and treated more favourably than the other?  The need for housing with care and support is no different; the need for employment is no different; the need for education is no different.

After all, a new act of parliament drafted to meet the needs of football, and which only privileged Manchester United, would be widely regarded as idiotic.

What does the Down Act say? It orders the Secretary of State to issue guidance to “relevant authorities” [NHS, local councils, commissioners, GPs etc) on the steps it would be appropriate for them to take “to meet the needs of persons with Down syndrome”. ‘Needs’ are not defined. They could be anything but they are expected to focus principally on housing.

This matters because of the widespread shortage of appropriate, affordable and well-designed supported housing for all adults with learning disabilities. The need is significant while the supply is lacking.

The guidance required under the Act has not yet appeared but when it does, what effect will it have?  The law says: “Relevant authorities must have due regard to the guidance in the exercise of their relevant functions.” (For example, when considering supported housing allocations, local councils will inevitably be led to give special consideration (more than “due regard”) to people with Down syndrome because they and no other group is mentioned in the legislation.  A special emphasis has been created and it cannot be ignored.

However, before giving her guidance “the Secretary of State must consult such persons as [she] considers appropriate.” She must publish the guidance and lay it before parliament so we can all read it. She can also review it from time to time. Finally, the act comes into force only when the government decides it should by regulation.

Law-making by chance, not conspiracy

This sounds welcome but the fact that it excludes equally deserving groups is regrettable. How did this exceptionalism come about?

The problem arose because of an arcane British parliamentary procedure by which an apparently random proposal can become the law of the land (In fact the law of England and Wales; the Act does not apply in Scotland.)

The Down Act was not in the government’s manifesto. It arose through a process known as a ‘private member’s Bill.’ This is a lottery. It allows someone’s pet project to become law. Provided it commands sufficient support, the ruling party will not stand in its way. Time will be made for it in the government’s general legislative programme. Competition for Bills to fill the winning ballot slots is intense. All kinds of weird proposals come forward. Few survive.  A winner of the ballot draw, Liam Fox MP, ‘sponsored’ the Down Bill. Naturally, it was supported by those with Down syndrome, by their families and charities. Who could blame them? Objection that the Bill would result in a skewed act of parliament did not result in amendments.

A better Bill would have been more comprehensive and met a greater number of needs.  A better Bill might have been developed by the government because it thought the effort worthwhile, rather than leaving it to chance.  Nor are prospects good for enlarging the scope of the Act. For this to happen, the actions of a public body under the regulations (yet to appear) would have to be challenged under judicial review by someone with ‘standing’ (ie not just anyone at random). It could take years for such a case to arise. The Down Act 2022 is the result of government legislation by national lottery.  It’s lucky for some.

Down but not out: why a new law should reach out and embrace everyone
By Rory Coonan

There is a new act of parliament that benefits people with Down’s syndrome. So why grumble? The Down Syndrome Act 2022 (‘the Down Act’) will improve the lives of a group of people with learning disabilities who are entitled to care and support. Surely this would be welcomed by everyone. Unfortunately, this is not so. As with all legislation that helps one group to the detriment of another, the cheers of the former are equalled only by the groans of the latter.  How did this come about? And how long will it be before common sense prevails and everyone with learning disabilities can benefit from a new law which names only one group?

It is perfectly reasonable to ask why, for example, people with PWS (Prader-Willi Syndrome) should not equally benefit from laws in England and Wales under the Down Act.

A football law only for Manchester United would be unjustifiably biased, so why single out a single learning disability?

Since at the genetic level the differences can be described in terms of chromosomal variations, why should the practical, day-to-day needs of one group be singled out by parliament and treated more favourably than the other?  The need for housing with care and support is no different; the need for employment is no different; the need for education is no different.

After all, a new act of parliament drafted to meet the needs of football, and which only privileged Manchester United, would be widely regarded as idiotic.

What does the Down Act say? It orders the Secretary of State to issue guidance to “relevant authorities” [NHS, local councils, commissioners, GPs etc) on the steps it would be appropriate for them to take “to meet the needs of persons with Down syndrome”. ‘Needs’ are not defined. They could be anything but they are expected to focus principally on housing.

This matters because of the widespread shortage of appropriate, affordable and well-designed supported housing for all adults with learning disabilities. The need is significant while the supply is lacking.

The guidance required under the Act has not yet appeared but when it does, what effect will it have?  The law says: “Relevant authorities must have due regard to the guidance in the exercise of their relevant functions.” (For example, when considering supported housing allocations, local councils will inevitably be led to give special consideration (more than “due regard”) to people with Down syndrome because they and no other group is mentioned in the legislation.  A special emphasis has been created and it cannot be ignored.

However, before giving her guidance “the Secretary of State must consult such persons as [she] considers appropriate.” She must publish the guidance and lay it before parliament so we can all read it. She can also review it from time to time. Finally, the act comes into force only when the government decides it should by regulation.

Law-making by chance, not conspiracy

This sounds welcome but the fact that it excludes equally deserving groups is regrettable. How did this exceptionalism come about?

The problem arose because of an arcane British parliamentary procedure by which an apparently random proposal can become the law of the land (In fact the law of England and Wales; the Act does not apply in Scotland.)

The Down Act was not in the government’s manifesto. It arose through a process known as a ‘private member’s Bill.’ This is a lottery. It allows someone’s pet project to become law. Provided it commands sufficient support, the ruling party will not stand in its way. Time will be made for it in the government’s general legislative programme. Competition for Bills to fill the winning ballot slots is intense. All kinds of weird proposals come forward. Few survive.  A winner of the ballot draw, Liam Fox MP, ‘sponsored’ the Down Bill. Naturally, it was supported by those with Down syndrome, by their families and charities. Who could blame them? Objection that the Bill would result in a skewed act of parliament did not result in amendments.

A better Bill would have been more comprehensive and met a greater number of needs.  A better Bill might have been developed by the government because it thought the effort worthwhile, rather than leaving it to chance.  Nor are prospects good for enlarging the scope of the Act. For this to happen, the actions of a public body under the regulations (yet to appear) would have to be challenged under judicial review by someone with ‘standing’ (ie not just anyone at random). It could take years for such a case to arise. The Down Act 2022 is the result of government legislation by national lottery.  It’s lucky for some.