GetOnDowns (@GetOnDowns) profile picture

Support for families of children with Down's syndrome.

Carshalton, Surrey
Joined January 2014
Photo by GetOnDowns (@GetOnDowns)Photo by GetOnDowns (@GetOnDowns)Photo by GetOnDowns (@GetOnDowns)Photo by GetOnDowns (@GetOnDowns)Photo by GetOnDowns (@GetOnDowns)Photo by GetOnDowns (@GetOnDowns)Photo by GetOnDowns (@GetOnDowns)Photo by GetOnDowns (@GetOnDowns)Photo by GetOnDowns (@GetOnDowns)Photo by GetOnDowns (@GetOnDowns)
Another successful meeting, looking forward to the public consultation and hopefully a powerful and useful #DownSyndromeAct @SKinnock @APPGDS
Thank you Minister @SKinnock @DHSCgovuk for working with the @APPGDS & @NDSPolicyGroup to ensure the #DownSyndromeAct guidance is meaningful, robust & will improve outcomes for all. Reassuring timelines are confirmed for public consultation. @DamianHinds @garrettflo #AndrewCooper
4
59
Looks like it was a very productive meeting. Good to see @garrettflo from the @NDSPolicyGroup Advisory Group sharing ICB information.
A packed agenda incl. delays & ongoing issues with the #DownSyndromeAct guidance, the #AssistedDyingBill, & reported changes to EHCP eligibility. Thanks to Cambridge Uni @CIDDRG for their Alzheimer’s presentation & @garrettflo for sharing the Advisory Group ICB challenge results.
4
53
Disappointing that the #DownSyndromeAct guidance is yet further delayed, but this provides an additional opportunity for the @DHSCgovuk to listen to ongoing concerns about the content & work productively with stakeholders to create robust & meaningful guidance, now long overdue.
2
11
2
20
1,275
Great response from a letter by a member of the @NDSPolicyGroup Advisory group @EastLancsDS Thanks @AndyMacNaeMP for listening.
This quoted post is unavailable.
1
5
79
Fabulous Fionn!
✉️ Postcard from New York where NDSPG Founding Office Fionn from @fionnathan spoke about improving support systems at the 14th World Down Syndrome Day Conference supported by his fellow NDSPG Ambassador @garrettflo 👏🏻👏🏻👏🏻 #WDSD25 #DSI
38
Thank you all for your support, big thanks to @Bobby_Dean @NDSPolicyGroup
1
8
146
Thank you to MPs who supported the @APPGDS @grahamstuartMP call for a @HouseofCommons debate highlighting widespread concerns with the Down Syndrome Act Guidance #DownSyndromeAct #FitForPurpose  @DamianHinds @LiamFox @Bobby_Dean
1
7
102
Nearly two thirds of respondents @rcpsych are not confident that consent can act as a safeguard. "This bill should be overwhelmingly rejected" say leading expert psychiatrists. #AssistedDying @kimleadbeater @danny__kruger @DavidAltonHL @MoncktonR
Astonishingly frank letter in today's Times on the serious deficiencies in the Committee 'scrutinising' @kimleadbeater's assisted suicide bill: "This bill should be overwhelmingly rejected." thetimes.com/comment/letters…
1
10
1
18
1,094
Our open letter supported by 62 groups across UK representing interests of disabled people highlights need for cautious, inclusive & comprehensive examination of assisted dying proposals ndspg.org/wp-content/uploads…
1
373
25
888
42,303
Get on Down’s supports this @NDSPolicyGroup @Bobby_Dean
An open letter signed by 60+ organisations raises serious concerns about the potential impacts of legalising assisted dying, urging @UKParliament to uphold their safeguarding duties & ensure legislation does not inadvertently harm the most vulnerable in society #AssistedDyingBill
1
6
84
Great job!
Huge congratulations to Billy, who attended the Sutton Community Awards Evening and proudly received his Outstanding Young Person Award!🏆 A well-deserved recognition for his incredible achievements. We’re so proud of you, Billy!👏 #SuttonAwards2024 #OutstandingYoungPerson #HASU
4
62
Huge congratulations to Billy, who attended the Sutton Community Awards Evening and proudly received his Outstanding Young Person Award!🏆 A well-deserved recognition for his incredible achievements. We’re so proud of you, Billy!👏 #SuttonAwards2024 #OutstandingYoungPerson #HASU
2
1
8
1,349
Very proud of these young men- Outstanding Young Person Award #suttoncommunityawards2024 well done Billy and Ben!
1
1
6
529
👏👏👏👏
Productive @APPGD @HouseofCommons with valuable contributions from @DownsCheshire & @NDSPolicyGroup Advisory Group highlighting their day to day challenges with education, employment, housing & healthcare. @davidgoss @jackmrankin @GoAndrCoop @BaronessHollins @DamianHinds
5
92
Productive @APPGD @HouseofCommons with valuable contributions from @DownsCheshire & @NDSPolicyGroup Advisory Group highlighting their day to day challenges with education, employment, housing & healthcare. @davidgoss @jackmrankin @GoAndrCoop @BaronessHollins @DamianHinds
6
14
2
25
2,924
Well done Billy, proud of you!
Billy has been nominated for the Outstanding Young Person of the Year Award at the Sutton Community Awards 2024!The award celebrates people under 21 who bring credit to the borough through exceptional academic, sporting, artistic, or cultural achievements. Well done, Billy!🌟👏
2
79
Delighted to relaunch the @APPGDS with excellent cross party support, welcoming our new co-chairs, @DamianHinds @GoAndrCoop Thanks to our new members & @NDSPolicyGroup & particularly our policy network leaders, @fionnathan, Ed @garrettflo for their informative presentation.
1
7
2
25
1,789
👏👏👏
Another important day for all people with Down syndrome as we celebrate the relaunch of the @APPGDS. Proud to provide the secretariat once again and support our MPs in this vital work.
3
83
The opportunity to correct a serious disconnect in how people with Down syndrome are valued within society. Someone at some point made a decision to limit outcomes for people with Down syndrome - this firmly says, ‘not anymore’ - this is not political this is about people! #NC41
Thanks to @LiamFox for clarifying  his amendment to the Criminal Justice Bill clause to make it even more explicit about the intention. As stated before, this clause is to value people with Down syndrome equally at all times. bills.parliament.uk/bills/35…
1
1
1
15
3,538