More than half of children with disabilities receive no services, new survey reveals

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DISABLED PEOPLE’S ORGANIZATIONS are calling for the urgent implementation of interim measures to address the lack of services provided to children with disabilities following the grim findings of two recent investigations.

Over 50% of families with children surveyed by Inclusion Ireland did not receive any services. Another survey by Down Syndrome Ireland supports this finding, with almost half of their respondents reporting no therapy of any kind in the last year.

Many parents said their child had spent a long time on a waiting list for services. 85% of Inclusion Ireland respondents said they had waited or continued to wait more than a year, with some waiting more than six years.

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Both investigations highlight the loss of services as well as a lack of clarity and communication regarding the plans and timelines of the controversial Progressing Disability Services program, which is changing the way services are provided to children.

Over 1,000 families responded to Inclusion Ireland and nearly 30% of Down Syndrome Ireland 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 had to express,” said Derval McDonagh, CEO of Inclusion Ireland.

Impact of no therapy

A worried family member is Aoife Daly whose daughter Croía has not had any therapy for the past year. Until then, Croía was undergoing physiotherapy sessions, but this was interrupted after being informed of a move of services due to the new program.

“When I spoke to someone about the new services, they told me they were still seeing serious cases. It made no sense. How can they tell me about my daughter when they’ve never met her?

Daly beamed when she spoke of her two-year-old daughter’s love of music and dancing, as well as her keen sense of fashion – being determined to choose her own clothes. However, the upheaval in her voice was evident when she mentioned Croía’s frustration when communicating with her and the children at her preschool.

“When there are other kids around and they’re all talking, you can see she’s watching them and trying so hard to try to interact.”

Croía has never received speech therapy, which Down Syndrome Ireland says is “of particular importance” for people with Down syndrome. Their survey revealed that 65% of respondents had not received any speech therapy sessions in the past year.

After ‘ringing and ringing’, Croía has an appointment with a speech therapist for the first time next week, but Daly said she doesn’t know if she would have gotten that appointment without ‘almost crying’ on the phone . new services.

Other families also said Remarkable about problems with trying to contact these services as well as lack of updates or communication from them. The Down Syndrome Ireland survey found that 40% of respondents had had no communication from the HSE in the past year.

Two-year-old Croía with her hair tied up and wearing a white blouse and knitted top with a quote from her mother Aoife Daly about lack of services: It makes our children seem not valued when we tells you that there is nothing available.

“Poor implementation” of the new model

The system is failing children, according to Barry Sheridan, CEO of Down Syndrome Ireland, who said: “Overall we see very poor implementation of Progressing Disabilities in terms of meeting the needs of people with Down Syndrome. Down.

He added that the survey results were “very disappointing” and “we need to do better” as a country.

Although the Progressing Disabilities model may improve over the next few years, we don’t have years. We now have children who have had no access to therapy and we are concerned about these children and their opportunity to live their lives to their full potential.

Sheridan said they are looking to implement interim solutions for those unable to access services. Over 70% of respondents to the Down Syndrome Ireland survey would like financial support to enable them to find therapy on their own, with Inclusion Ireland reporting that parents are ‘under extreme financial pressure to find private therapy’.

Inclusion Ireland’s survey report also states that “early intervention is well researched and documented in terms of a child’s development and subsequent access to their right to education” and the importance of this has was highlighted by all. Remarkable spoke to.

Providing early intervention and services designed to minimize and prevent further disabilities is part of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) which is violated by Ireland, according to Sheridan. “That’s not happening and the Irish government has signed on for that.”

When Remarkable asked for a response to Ireland’s compliance with the UNCRPD, an HSE spokesperson did not directly comment on this. However, they said the Progressing Disability Services program “supports the reconfiguration of services for children with disabilities to provide equitable, child- and family-centered services based on need rather than diagnosis” and that “it is consistent” with the UNCRPD.

The same question was directed to a spokesperson for the Ministry of Health who said that “the approach of the UNCRPD since the ratification of the main convention has been one of progressive realization where we move towards full implementation complete step by step and year by year.”

They added that the Minister for Children and Disabilities, Roderic O’Gorman, and the Minister of State for Disabilities, Anne Rabbitte, “have indicated that each is open to early ratification of the optional protocol, if possible”. If ratified, it would allow people with disabilities to file individual complaints with the United Nations.

The process of change “has been difficult”

Remarkable also presented the results of the Down Syndrome Ireland survey to the HSE and asked what it was doing to address parents’ concerns about the Progressing Disabilities model, with many reporting a worsening situation for their children.

An HSE spokesperson said it “welcomes the release” 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 with Disabilities Network (CDNT) teams across the country. These teams ensure that children with complex needs can access child and family centered supports based on their needs rather than their diagnosis.

This is a new service model to provide fair and equal access to all children, no matter where they live or where they go to school. The majority of CDNTs were created in 2021 and the HSE acknowledges that the process of change has been difficult in some areas.

Minister Rabbitte “acknowledges and accepts that the implementation and roll-out of CDNTs has proven difficult and that services have not yet reached the desired level,” according to a spokesperson for the Ministry of Health, who added :

“There have been recruitment and retention issues in filling therapy positions due to the availability of labor and the significant availability of healthcare employment opportunities within the meaning of large. Unfortunately, this has led to delays in children’s access to therapeutic supports.

The DOH spokesperson said “the Minister has been keen to plan for the expansion of CDNTs to meet the needs of children and has maintained support for additional positions in recent years.”

The first phase of the “reconfiguration of services for children with disabilities” is now complete, according to the HSE spokesperson. They said 375 positions have been awarded to support CDNTs in 2021/2022, with recruitment for these positions ongoing. They added:

“Services are changing from being professional-focused or expert-led to family-focused services… The family contributes their knowledge of their child and the team contributes their expertise. »

Updated March 11 to include Department of Health response

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