DownSyndromeIreland

Personalised Budgets Demonstration Projects

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The HSE is looking for up to 180 adults with a disability to participate in the Personalised Budgets Demonstration Projects over the coming two years, DSI heard at a conference around the pilot scheme this week.  The closing date for expressions of interest for Phase 1 is October 16th 2019

Aisling Hunt, Personalised Budgets Project Manager, appeared at a conference hosted by the Disability Federation of Ireland and outlined the full scope of the upcoming demonstration projects.

The HSE is looking for participants who access day services, residential services, respite services, rehabilitative training and personal assistance across the country.

How is the HSE going to test the Personalised Budgets Demonstration Projects:

The HSE is looking to test three difference models;

a person managed fund
a co-managed fund with a service provider and
a broker managed fund.

The Project will run in two phases.  Phase 1 will open for expressions of interest in late August and will commence from October 2019. Phase 2 will commence from April 2020. The HSE is seeking 90 participants in both phases.

Who can apply to participate in Personalised Budgets Demonstration Projects:

As we previously outlined to our members here, only adults with a disability that are currently in receipt of HSE-funded disability services, either directly provided by the HSE or through disability service providers can apply.

Young people leaving school in 2019 and 2020 that have a commitment to a funded day service can also apply.

Who cannot participate at this time?

Children with a disability
Older Persons Services
Individuals not in receipt of HSE disability funded services, either directly provided by the HSE or through the non-statutory sector
Adults currently in receipt of HSE funded services where the associated funding cannot be unbundled

How long is the Personalised Budgets Demonstration Projects going to run for?

The project will run for two years. It is anticipated that each successful applicant will participate in the demonstration projects for at least 12 months.

What can participants spend their money on:

Participants can only spend their direct payment on specific personal supports funded by the HSE. These supports will be agreed and identified in each participants’ Personal Support Plan.
Participants cannot use the direct payment to pay for informal care from a spouse, partner or close relative.
Participants cannot use their direct payment to pay for therapeutic services which are available from the HSE in the community.
Participants cannot use their direct payment to pay for supports that would normally be provided by another Government Department or Statutory Agency e.g. transport.
Participants will be asked to keep records on what they spend their personalised budget on and how it matches what was agreed in their personal support plan.

If you would like to be considered?

If any of our members would like to be considered to participate in the Project, please contact the Personalised Budgets Demonstration Projects Office and additional information regarding participation will be forwarded to you.

The closing date for expressions of interest for Phase 1 is October 16th 2019. No applications for Phase 1 will be considered after this date. Phase 2 will commence in April 2020.

Postal Address

Personalised Budgets Demonstration Projects Office
Community Strategy and Planning
Health Service Executive
Block D, Parkgate Business Centre
Parkgate Street
Dublin D08 YFF1

Via email to – pbdemo@hse.ie

Via telephone – 01 6352885

https://downsyndrome.ie/personalised-budgets-an-update-from-the-hse-on-the-demonstration-projects/

Regional Advisory Council

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The Regional Advisory Council held its first formal meeting on September 4th in Conyngham Arms hotel Slane.

The newly formed Regional Advisory Council(RAC) is an independent self-advocacy group for adults with Down syndrome in the North East area. The 14 member council, consisting primarily of people from Meath and Louth but also some from Westmeath and Cavan, is the first of its kind within DSI’s 25 branches. Based on the successful National Advisory Council developed over a number of years, the RAC offers an opportunity for the branch members to have a structured input into the plans and activities of DSI in the region.

Speaking at the first meeting of the Council, Louth Meath branch chairperson Paul Radford said:

“We are proud to be the first branch in Ireland to commence the Regional Advisory Council initiative. We have known for a long time, as both parents and committee members, that people with Down syndrome have their own voice and opinion about how they want to live their lives. The RAC will ensure that those voices are listened to, those opinions respected and acted upon.”

Council facilitator and DSI National Advocacy Officer, Helena Connors said:

“We are delighted that the Louth Meath branch are taking the lead on the RAC programme and we hope to follow suit with other branches across our countrywide membership. Over the next two years, the Regional Advisory Council members will engage in structured self-advocacy and organisational skills training that will enable them to be confident and effective self-advocates. They will be electing their own officers and speaking out on the issues of concern to themselves and the communities in which they live. Watch this space!”

https://downsyndrome.ie/a-national-first-for-the-north-east/

Allyson Maher Helena Connors DSI council ficilitator national advocacy officer , Megan Mc Cormick ,Brendan O’ Shea and Niamh Mc Nally at the newly formed regional advisory council Launch at the Conyngham Arms Slane Photo Jimmy Weldon
Conor O’ Dowd, Fintan Bray,Mike Egan Louth Meath resource officer,Tomas Nally and Cathal Byrne at the newly formed DSI regional advisory council Launch at the Conyngham Arms Slane Photo Jimmy Weldon
Annmarie Whelan, Fintan Bray and Elearnor Murray at the newly formed DSI regional advisory council Launch at the Conyngham Arms Slane Photo Jimmy Weldon
Paul Radford Chairperson, Liam Foley,Helena Connors DSI council ficilitator national advocacy officer, Fintan Bray, Mike Egan DSI Louth , Meath resource officer at the newly formed regional advisory launch at the Conyngham Arms Slane

Keep Fit classes for teenagers and adults

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Our weekly Keep Fit classes for members age 16 and over, are resuming this Thursday in Drogheda after our August break.  Classes last one hour and cost approximately €6 per week.
A small number of places are available for the coming term.
If you are interested or would like more information, please contact Sheelagh Mc Nally on 086 1539442 or email sheelaghmcnally@gmail.com

We want your opinion: Mental Health Survey

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Mental Health Survey DOWN SYNDROME LOUTH /MEATH: Young Adults/ Adults with Down Syndrome age 16 +

After representation from our members we wish to conduct a Mental Health Survey for Young Adults / Adults with Down Syndrome age 16 +
Please click on this link to complete the Survey. https://www.surveymonkey.com/r/L832FX8 

Mental health and well-being are big issues at the present time in Ireland. One in four adults will have mental health issues at some time in their life.  Young adults with Down Syndrome are no exception. They, their primary carers and their siblings are affected by these problems.

The purpose of this survey is to gather data about the specific mental health issues which may impact upon young adults with Down Syndrome. We wish to represent the experiences of parents, carers and guardians, and of the young adults themselves, both at home or in residential care. Therefore, your assistance in completing this survey is essential.

The data received will be received anonymously from each member.

The data generated from this survey will be published by Down Syndrome Ireland Louth Meath Branch & Down Syndrome Ireland.  It will be used in identifying the needs of individuals and the professional services required by the Down Syndrome community. Down Syndrome Ireland can use this Information to lobby Government for these services to be implemented.

Please click on this link to complete the Survey. https://www.surveymonkey.com/r/L832FX8 

Please share this Survey with other families in the Louth Meath area you know who may not be members of the Louth Meath Branch.

The Survey will take approx 8 minutes to complete.

Education Conference 2019/2020

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Down Syndrome Ireland have organised Education Conferences for 2019/2020.

“Managing Behaviour & Transitions for the Student with Down Syndrome”

“Supporting the Child with Down Syndrome in Mainstream Primary School”

 

Please note: early booking is essential as, due to the high costs involved, the conferences will only go ahead if sufficient numbers are booked. Each Primary, Post-Primary and Special School have also been notified.

Full details and a booking facility for each conference will be available on www.downsyndrome.ie from September 1st2019.

 

See & Learn Training

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See & Learn Training

Conyngham Arms Hotel Slane

 26th August or 30th September

6 – 9 pm  

Down Syndrome Ireland are rolling out See and Learn training to parents of children aged between 2 and 5 years (early years and preschool).

DSI are investing in rolling out See and Learn with funds raised through our HB Fundays campaign this year. See and Learn is an evidence based, structured teaching programme which teaches speech, language and reading skills in small steps for children with Down syndrome up to 6 years of age.

The programme is designed to help educators and parents provide young children with the additional support and practice they need to learn language.

During 2020, DSI want to put a See and Learn pack in every participating pre-school in the country that has a child with Down syndrome attending and provide See and Learn packs to each of our 25 local branches.

DSI have been in contact with all of our member parents of children aged 2 – 5 asking them if they and / or their child’s early year’s educators would like to participate in our training programme and we’ve had lots of interest!

To find out more about the project you can contact Olive Buckeridge Olive@downsyndrome.ie, or the and See and Learn Project Leader, Gavin Mc Donnell gavin@downsyndrome.ie or check out our website here: https://downsyndrome.ie/what-we-do/see-and-learn/.

To register for the Training please contact olive@downsyndrome.ie or gavin@downsyndrome.ie.

CONSENT FORM PDF

INFORMATION SHEET PDF

DSI calls for IEPs to become a legal right and access to revised July Provision scheme

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Message from Gary Owens, CEO, Down Syndrome Ireland

DSI calls for IEPs to become a legal right and access to revised July Provision scheme during meeting with Minister for Education Joe McHugh

Dear Member,

We hope this email finds you well.

As you may be aware, we met with the Minister for Education and Skills Joe McHugh and Department officials to discuss the education needs for children with Down syndrome, including access to July Provision and for Individual Education Plans to be enshrined in law.

The outcome of the recent High Court actions regarding July Provision are confidential but the Department has clarified that the children were not admitted to the programme. We argued for the scheme to be extended to every child with Down syndrome for this year but, according to the Department, this is not possible.

However, the scheme as it stands is currently under review and we are happy to say – following our meetings and ‘Please Don’t Leave Us Behind’ education campaign – Down Syndrome Ireland will be strongly represented in the consultation process, which is due to take place this Autumn. We understand that there will be a needs based approach to the scheme from Summer 2020. We will continue to strongly advocate for all children with Down syndrome who wish to avail of the new scheme to be automatically eligible.

Individual Education Plans

At the meeting, we continued to call for Individual Education Plans to become a legal requirement for all children who need them, including for children with Down syndrome.

Effective planning is key to supporting a child with Down syndrome to succeed at all stages of their educational journey.

A fully inclusive education is a right, not a privilege. Down Syndrome Ireland has long campaigned for the EPSEN Act 2004 to be fully enacted so that the rights of students with additional educational needs are enshrined in law, rather than depending on encouragement from the Department of Education and Skills and the goodwill of schools and teachers.

Students with Down syndrome were recently reminded that they have no legal right to an Individual Education Plan (IEPs). IEPs are documents that identify children’s special educational needs and set goals to meet those needs. At present, IEPs are not legally required in our school system as the provision requiring IEPs in the EPSEN ACT is not implemented.

Our call comes after Teachers’ Unions the ASTI and TUI advised their members in Autumn 2018 to stop implementing IEPs for students with additional needs, such as those with Down syndrome, due to a lack of funding and adequate training provided to their members.

The answer to a Parliamentary Question about the implementation and resourcing of the EPSEN Act 2004 makes it clear that the Government accepts that the funds needed for its full implementation have not, and will not, be provided. The current Department of Education and Skills’ position seems to be that schools are encouraged to implement large parts of the EPSEN Act without having the necessary resources.

We called for a plan to be initiated immediately to ensure that teachers are resourced and trained to meet the needs of all their students.

Since then, our ‘Please Don’t Leave Us Behind’ campaign has seen us host a briefing for politicians in Leinster House, we have appeared in front of the Joint Oireachtas Education Committee, we have met directly with both Unions and met with the Department of Education and Skills. Still, nothing has changed. We remain deeply disappointed and angered that the education needs of children with intellectual disabilities remains a bargaining tool between Teachers’ Unions and the Department of Education and Skills. Children with Down syndrome are being activity discriminated against. It’s shameful that 15 years after the EPSEN Act was first became law, it has still not been fully enacted.

We continue to call for a plan to be initiated immediately to ensure that teachers are resourced and trained to meet the needs of all their students.

We will keep you posted on our progress.

Thanks and have a lovely weekend.

With very best wishes,

Gary Owens
CEO
Down Syndrome Ireland

DSI AGM 2019

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This year’s Conference and AGM is being hosted by our Louth Meath branch and will take place in the beautiful historic town of Trim County Meath on Saturday the 29th in the wonderful setting of the Trim Castle Hotel.

We look forward to seeing a lot of new and familiar faces at this year’s event.

As well as our AGM, we also have lots of workshops taking place throughout the conference on topics that will be of interest to all of our members and their families. We ask that you please book your place in advance so we can accommodate as many members as possible throughout the weekend. Please note that all places and programmes must be booked by June 20th – thank you and see you there!

https://downsyndrome.ie/event/agm-2019/

Invitation to Join the Regional Advisory Council

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Many thanks to everyone who attended the Information Evening on the Regional Advisory Council last week. A special thanks to our guests, Eileen Dunne(former Chairperson of the National Advisory Council) and Helena Connors(Adult Advocacy Officer, DSI) who shared their experience and advice with us.

We are now delighted to formally extend our:

Invitation to join the new Regional Advisory Council in the Louth/Meath Branch of Down Syndrome Ireland
What is a Regional Advisory Council?
• The Regional Advisory Council (RAC) gives adults with Down syndrome a chance to talk about the local issues that are important to them
• The Louth/Meath Branch of Down Syndrome Ireland listens to what the council has to say
• The RAC will decide what projects to work on
• In 2020, the RAC will vote for 1-3 members to join the National Advisory Council
The RAC supports council members to become more confident and to learn new skills like:

• Respectful listening
• Giving opinions
• Travel to Council meetings independently
• Know your Rights
• How to speak at meetings
• How to be in charge of a meeting
• How to be an officer of the Regional Advisory Council
• Talking to others about what you do in the RAC
How does the Regional Advisory Council work?

• The RAC meets monthly. There are no meetings in July and August
• RAC members sit on the council for three years; the first year is primarily training in advocacy and communication skills
• Two facilitators will support the work of the RAC
If you are an adult(18+) with Down syndrome and interested in joining the Regional Advisory Council, please submit your name and contact details to:
Mike Egan, Regional Resource Officer, Louth Meath Branch DSI.
Phone: 085.8618866 Email: mike@downsyndrome.ie