Proposals aimed at helping people with Down’s Syndrome access care and services will “fall into oblivion” if they fail to become law within weeks, peers have heard.
The House of Lords gave the Down Syndrome Bill an unopposed second reading on Friday and it has already cleared the House of Commons.
But the Government and independent crossbench peer Baroness Hollins, who is sponsoring the Bill in the Lords, warned peers that tabling amendments would mean the proposed legislation would fail to become law.
If amendments are laid, the Bill will be killed
The current parliamentary session is expected to end in the coming weeks, at which point the private member’s bill would fail unless it has cleared all stages in both Houses.
Concerns have been raised about its current drafting, including over a lack of funding guarantees and the lack of involvement of those with Down’s Syndrome in decisions about them.
But Lady Hollins said: “If amendments are laid, the Bill will be killed. If there are no amendments, third reading will take place on April 1.
“If this Bill does not pass it will fall into oblivion. Yet again, out of sight and out of mind.
“There won’t be another Bill for learning disability to replace it. The desire for perfect is so often the enemy of the good.”
Health minister Lord Kamall also said: “The Government, if there are no amendments, will be able to give time to this Bill to support it.”
The Bill would require the Government to publish guidance on the specific needs of people with Down’s Syndrome and how they should be met.
Authorities providing health, care, education and housing services must then act to deliver on these requirements.
With legal protections in place, it is hoped the Bill will make it easier for people with Down’s Syndrome and their families to secure the services they need and to challenge authorities not acting on their duties.
During the debate, Liberal Democrat Baroness Jolly stressed the importance of involving people in the decisions being made about them along with their parents and family.
She said: “The Bill is silent in its guidance about involving the person with Down’s Syndrome about these decisions about how they live, with whom and when.
“We often fail to do this and were this Bill ever to reach a committee stage, I’d like to lay an amendment which would ensure that people with Down’s Syndrome or any of the other learning disabilities could say with their hand on their heart that no decision is ever made about me without me.
“We would not fail to involve people with a physical disability in legislation relating to them.
“The Secretary of State should make provision to involve people with Down’s Syndrome and any other learning disability in any guidance written by the department.”
Green peer Baroness Bennett of Manor Castle said if Lady Jolly moved an amendment on such lines then she would be “interested in supporting it”.
Lady Bennett went on to raise concerns expressed to her, including that the duties in the Bill are “narrowly drawn, demand very little of public bodies and, crucially, attract no new funding”.
The Bill is not about enhanced rights for people with Down's Syndrome, it's about making sure that these identifiable unique needs are not overlooked when planning, designing and delivering services
For the Government, Lord Kamall said: “The Bill is not about enhanced rights for people with Down’s Syndrome, it’s about making sure that these identifiable unique needs are not overlooked when planning, designing and delivering services.
“The Government has committed to developing the guidance through intensive and inclusive consultation with all interested parties.
“This will include people with Down’s Syndrome and their families, people operating the services and the organisations and individuals that represent people with Down’s Syndrome.”
Lord Kamall said it is expected the guidance would be published within a year of the Bill receiving royal assent, adding MPs and peers will be able to scrutinise it when it is laid before Parliament.
Responding to concerns over the impact of the Bill on abortion, Lord Kamall said: “The Bill is limited to the needs of a person with Down’s Syndrome after they are born.
“This means it does not address abortion. This Bill gives authority to the Secretary of State to produce statutory guidance, which will clarify existing frameworks and practices.
“Statutory guidance cannot be used to amend primary legislation, such as the Abortion Act.”
The Bill will undergo further scrutiny at a later stage.
