Sign in. It’s quick, free and it’s up to you.
An account is an optional way to support the work we do. Find out more.
DISABILITY ORGANISATIONS ARE calling on the urgent implementation of interim measures to address the lack of services being provided to children with disabilities following the stark findings of two recent surveys.
Over 50% of the families of children surveyed by Inclusion Ireland were not in receipt of any service. Another survey by Down Syndrome Ireland backs this finding with almost half of their respondents reporting no therapy of any kind in the last year.
Many parents reported that their child spent a significant time on a waiting list for services. 85% of the Inclusion Ireland respondents said that they have waited or continue to wait for more than a year, with some waiting more than six years.
Both surveys highlight loss of services as well as a lack of clarity and communication in relation to plans and timeframes for the controversial Progressing Disability Services programme which is changing the way services are provided to children.
Over 1,000 families responded to Inclusion Ireland and almost 30% of Down Syndrome Ireland’s members – over 400 families – took part in their survey. “The high level of response… is indicative of the deep concern that many families feel and needed to express,” said Derval McDonagh CEO of Inclusion Ireland.
Impact of no therapy
One family member with concerns is Aoife Daly whose daughter Croía has not had any therapy over the past year. Up until then Croía had been receiving physiotherapy but this was stopped after she was advised of a move of services due to the new programme.
“When I was speaking to someone from the new services, they told me that they were still seeing severe cases. It made no sense whatsoever. How can they tell me about my daughter when they’ve never met her?”
Daly beamed when she spoke of her two-year-old’s love of music and dancing, as well as her strong minded fashion sense – being determined to pick out her own clothes. However, the upset in her voice was evident when she mentioned the frustration Croía has when communicating with her and children in her playschool.
“When there’s other kids around and they’re all chatting away, you can see that she’s looking at them and she’s trying so hard to try and interact.”
Croía has never received speech and language therapy, something that Down Syndrome Ireland state is “of particular importance” for people with Down syndrome. Their survey found that 65% of respondents received no speech and language therapy sessions last year.
After “ringing and ringing”, Croía has an appointment with a speech and language therapist for the first time next week, but Daly said that she doesn’t know if she would have got that appointment without “nearly crying” on the phone to the new services.
Other families also told Noteworthy about issues with trying to contact theses services as well as lack of updates or communication from them. The Down Syndrome Ireland survey found that 40% of respondents had no communication from the HSE over the past year.
‘Poor implementation’ of new model
The system is failing children, according to Barry Sheridan, CEO of Down Syndrome Ireland, who said: “Across the board, we’re seeing a really poor implementation of Progressing Disabilities in terms of meeting the needs of people with Down syndrome.”
He added that the survey results were “very disappointing” and “we need to be doing better” as a country.
While the Progressing Disabilities model could improve over the coming years, we don’t have years. We have children now who haven’t had any access to any therapy and we’re concerned about those children and their opportunity to live their life to their full potential.
Sheridan said that they are seeking the implementation of interim solutions for those who aren’t able to access services. Over 70% of respondents to the Down Syndrome Ireland survey would like financial support to allow them to source therapy themselves, with Inclusion Ireland reporting parents being “under extreme financial strain to source private therapies”.
Inclusion Ireland’s survey report also states that “early intervention is well researched and documented in terms of a child’s development and their later access to their right to education” and the importance of this was emphasised by all Noteworthy spoke to.
Provision of early intervention and services designed to minimise and prevent further disabilities are part of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) which is being violated by Ireland, according to Sheridan. “This isn’t happening and the Irish Government signed up to this.”
When Noteworthy asked for a response to Ireland’s compliance with the UNCRPD, a HSE spokesperson did not directly comment on this. However, they said that the Progressing Disability Services programme “supports the reconfiguration of children’s disability services to provide equitable, child and family centred services based on need rather than diagnosis” and that “this aligns with” the UNCRPD.
The same query was directed to a Department of Health spokesperson who said that the “approach to the UNCRPD since ratification of the main convention has been one of progressive realisation where we make progress towards full implementation step-by-step and year-on-year”.
They added that both Minister for Children and Disabilities, Roderic O’Gorman, and Minister of State for Disabilities, Anne Rabbitte, “have indicated that each is open to an early ratification of the optional protocol, if possible”. If ratified, this would enable disabled people to make individual complaints to the United Nations.
Change process ‘has been challenging’
Noteworthy also put the results of the Down Syndrome Ireland survey to the HSE and asked what it is doing to address parents’ concerns about the Progressing Disabilities model with many reporting a worsening situation for their children.
A spokesperson for the HSE said that it “welcomes the publication” of the survey report which “provides valuable insight into the experience of parents accessing services for children with disabilities”.
The spokesperson continued: “There are 91 Children’s Disability Network Teams (CDNTs) across the country. These teams ensure that children with complex needs can access child and family centred supports based on their need rather than their diagnosis.
This is a new model of service to provide fair and equal access for all children, regardless of where they live or where they go to school. The majority of CDNTs were established in 2021 and the HSE acknowledges that the change process has been challenging in some areas.
Minister Rabbitte “acknowledges and accepts that the implementation and roll out of CDNTs has proved challenging and services have not reached the desired level as yet”, according to a Department of Health spokesperson, who added:
“There have been recruitment and retention challenges regarding the filling of therapy posts due to workforce availability and the significant availability of employment opportunities across the wider health sector. Regrettably, this has caused delays in children accessing therapy supports.”
The DOH spokesperson said that the “Minister has been keen to provide for the expansion of the CDNTs to service children’s needs and has maintained support for additional posts in recent years”.
Phase one of the “reconfiguration of children’s disability services” is now complete, according to the HSE spokesperson. They said that 375 posts have been allocated to support CDNTs in 2021/2022, with recruitment to these posts on-going. They added:
“Services are moving from being professionally centred, or expert led, to being family centred… The family brings knowledge of their child and the team brings their expertise.”
Updated on 11 March to include Department of Health response
DELAYED DELIVERY Investigation
Do you want to find out more about the impact of the rollout of Progressing Disability Services on children and teens?
We want to examine the transition of children to this new model, investigate delays and communication and find out whether adequate resources are being put in place to make it a success.
To embed this post, copy the code below on your site
This is a complete myth, it is not easy to switch your mortgage, you essentially have to be completely reassessed again.
@Keith Twamley: of course you do …that’s exactly what a remortgage is
@Mark: Did you read the article Mark?
“Where you have switching that’s easy and fast, you have more competition”
@Keith Twamley: I was fixed for 5 years, 2 years in I asked about switching to the much lower new rate they have, No issue whatsoever no cost at all new rate fixed it for 4 years and reduced the term, all done over email took about 10 days. If you don’t ask you won’t get, I was surprised how easy it was and that their was no cost involved. EBS btw.
@Keith Twamley: It really should be as easy as switching electricity/gas.
Wont happen but it should be.
@Keith Twamley: That sounds great Cormac, unfortunately I don’t think it is the experience most have though, it really should be that easy, but usually is not, which is why most people are so reluctant to do it..
@Cormac Harte: Same here actually. Was on a fixed rate with the bank. I asked them if there would be any fee going to a new lower fixed rate. No problems.
And I did it again where I got a lower LTV rate. Again no problems. All with the same bank over the last 2 years.
@Keith Twamley: I think the issue is if your moving to a different bank you have to go through the whole rigmarole. If people look a little closer to home with their own banks 90% of them have far lower rates that they did 2 years ago worth a try asking for the lower rate I know 2 others mates that did the same thing with a different bank and same thing a very easy process. switching mortgage doesn’t necessarily mean switching banks. It’s worth a shot.
@Cormac Harte: Yes, thanks Cormac, I appreciate it is easier when sticking with the same bank. The article was really talking about switching providers. Just think there are so many things wrong with the banks, central bank has a lot to do with it too. Given the high price of houses currently, it doesn’t make sense to only be able to borrow 3.5 times your salary. And rent not being taken in to account in todays market is also crazy. I am foolishly hopeful that some of these issues will be addressed in next months budget. But think it will always be difficult to switch providers.
@Keith Twamley: that quote was from a commission member, not a Bank CEO. So I wouldn’t rely on it for your argument. Banks need to make sure you’re a good risk, so obviously they’ll do due diligence. Unlike the Celtic Tiger days, and we all know what lax assessment criteria resulted in. So this thorough ressement is the correct, prudent approach for a Bank
@Cormac Harte: switching can be easy enough when you’re staying within the same institution, it’s a completely different kettle of fish when you’re transferring externally. We’ve done it and saved thousands but it’s long and complicated, you also need to consider solicitor fees etc.
@Mark: It’s not a remortgage, that doesn’t exist in Ireland. The ‘person’ at BOI told us ‘they’d never heard of a remortgage’
Remortgaging (or whatever its called here), is like competing in Jumanji
In the process of switching. Taken about six months already
@Rmaybe: I was trying to switch to Avant earlier this year. I gave up after being asked for accountant letter, payslips (for the third time) and other docs. Our mortgage is 15 years old, we’re earning twice what we were earning back then and we’ve never missed one payment.
In the end I just contacted my current lender and fixed at their lowest fixed rate. Not quite as good as Avants but soooooo much simpler and no need for solicitors and it took one phone call and one form to sign.
It’s not that easy to switch I’ve tried and even though I’ve been over paying my mortgage for 4 years the bank says my earnings dont qualify for a mortgage so I’m stuck.
So, here come higher interest fixed rates, in exchange for longer fixed loan terms.
The banks will always win no matter what and that’s ok as long it’s within a reasonable margin ,that end has to be controlled
I still don’t get what’s the reason why we can’t have fix rate for the full duration of the mortgage?
Is the journal fffg in disguise ?
Banker rhymes with w##nker
Well I hope its easier then trying to switch a simple current account from Ulster Bank owing to its exit from Ireland
@Mary Garry: I switched from UB to PTSB. I don’t trust the banks to not fuk it up so I opened the new account and transferred the direct debits manually. It’s a bit more effort but not that hard.
It was a nightmare to switch our mortgage. Aside from finding it almost impossible to get talking to a human or to get a callback, from when we put in the application to when it eventually got processed months later the interest rates rose, thereby wiping out any savings achieved by switching. We got the old rate in the end but if a private company was run as inefficiently as the banks they would quickly go out of business.
CCPC or which ever agency has power should be legislating for switching mortgages to be easier. ( not just rates, but providers)
In the USA you can switch mortgage providers in a matter of days. No re-conveyancing, no silly solicitors fees which are very prohibitive.
If switching was easier it would allow for more competition with existing banks and might even encourage new banks to enter the market because they have a shot at attracting current low risk mortgage payers to their books.
@Rmaybe: I was trying to switch to Avant earlier this year. I gave up after being asked for accountant letter, payslips (for the third time) and other docs. Our mortgage is 15 years old, we’re earning twice what we were earning back then and we’ve never missed one payment.
In the end I just contacted my current lender and fixed at their lowest fixed rate. Not quite as good as Avants but soooooo much simpler and no need for solicitors and it took one phone call and one form to sign.
Almost zero choice in mortgage providers. Well done Fine Gael.
have your say