Offaly Down Syndrome facing struggle to provide services

OFFALY Down Syndrome Association is facing a serious challenge to continue providing its invaluable services.

Deputy Pauline Tully, Sinn Féin’s Spokesperson on Disability and Carers, was in Birr last week where she pointed out the challenges currently facing the disability service.

The TD met with Robbie Donnelly, Branch Administrator at Offaly Down Syndrome Association, to discuss what Robbie called, “major issues that we are facing in the association when it comes to providing these essential services.”

Robbie told the TD that the Offaly Down Syndrome Association, running since 1984, “provides various services to its adult and child members, and also to the parents of these members.” These services include speech and language therapy, photography classes, nights out for both the parents and members. “However, these things are now under severe pressure,” commented Robbie, opening up about the issues.

He attributed a lot of the problem to “the lack of funding surrounding the services that this organisation wishes to provide, which leads to a lack of staff. This staff includes speech and language therapists, physiotherapists, and SNAs (Special Needs Assistants) in particular. Special Needs Assistants are necessary for many children, particularly for those with Down Syndrome. Many of these children, in both primary and secondary levels, have complex needs and need to be with an SNA on a one to one basis. However, a lack of staff has led to a number of children, including those with complex needs, having to share SNAs, sometimes on a basis as high as one to four.”

Another problem that Mr. Donnelly feels is prevalent, is the lack of support for carers. He is currently a carer for his 8 year old son, who has Down Syndrome. Having gone from working a full time job within the media circle, to working 18.5 hours a week, with carer's allowance, Robbie notes that the cost of living crisis is proving to be tough for him and his family. “The price of bread has doubled, the carer’s allowance hasn’t”.

The contingencies surrounding carer’s allowance, and the amount provided, combined with the inability to get a hold of therapists, SNAs, and other services for their children, puts an immense amount of strain on many families.

The way in which children are assessed for their particular needs is also insufficient, Robbie told the Sinn Féin Deputy. “An Assessment of Need is carried out to determine what professionals think a child with disability may need; however, before this assessment has begun, the HSE have implemented a short screening assessment. This shorter assessment does not end with a diagnosis, which is what is required for a child with disabilities to be able to access any services provided by schools.”

The Teachta Dála pointed out that many parents are frustrated with this new system, as they are placed on two different waiting lists, which both have extensive wait times; and at the end of the day their children are refused the services that they need for long periods of time.

The new mode of assessment also involves multi-disciplinary teams assessing a child for their needs, putting even more pressure on therapists whose workload is already piling up. Robbie recalled one case of a child who was due to be assessed by 12 professionals, and was only assessed by 3, as the rest simply did not have enough time in their day to see any more people.

“The new model of progression has failed,” commented Deputy Tully, “the Minister has to accept that”.

This new model is also not being implemented in a way which Robbie feels is particularly informative, who pointed out that his branch was “sent a photocopied letter” stating that the model was being implemented, containing no information on what this might actually mean in practical terms, or how it can be supported by organisations like the Offaly Down Syndrome Association.

Robbie also noted that he had to fight for his son to get the 24 house care plan that he needs, which involved having a nurse at the school. It was a struggle to get this organised as neither the education system nor the healthcare system wanted to be involved in it.

“One side was saying we don’t hire nurses, the other was saying we don’t put nurses in schools, and they were sending us back and forth between the two”.

There is a lack of collaboration between the healthcare system and the education system when it comes to the needs of children with disabilities, and it has incredibly negative effects on both the child, and the family of the child.

Deputy Tully spoke about what Sinn Féin would implement in order to alleviate some of the pressure on both families and service providers. One of her main concerns was within the education sector. While, she said, the services provided within schools are good, and beneficial for many, there are not enough schools that actually provide these services. “School is important for every child,” she said. “It allows for an education, a social life, and, generally, helps you to become a well-rounded individual. However, children with disabilities are often left travelling upwards of an hour in order to just get to school. In order to fix this problem, services need to be provided in many more schools across the country so that children with disabilities can have the basic experience of simply attending the same school as their siblings.”

One policy that her party says it wants to put in place refers to medical cards. She talked about people with disabilities being allowed to hold a medical card for the entirety of their lives, with worked hours not affecting their eligibility. The aim of this would be to allow people with disabilities to join the working world, and not have to worry about whether or not working in their chosen career means that they won't be able to afford the medical expenses often incurred by disabilities.

“We should be ashamed to admit that we have the lowest level of employment among disabled people in the EU”.

This week also saw the publication of Ombudsman for Children’s (OCO) report: “Nowhere To Turn: Children with disabilities left with no support”. The Irish Association of Social Workers (IASW) has released a statement in support of this OCO report and its findings.

“There is an urgent need for equitable access to respite care,” the IASW states, “provision of enhanced supports for families in crisis, and regulation of residential and Home Sharing placements, for children with complex disabilities.

“The OCO report exposes the realities faced by parents of children with complex disabilities who are more and more frequently forced to make heart-breaking decisions to look for ways to care for their children outside of the family home. These decisions stem from the severe lack of adequate support and preventative planning.

“This situation is intolerable and IASW agrees with the Ombudsman that it violates the rights of children to grow up within their family and community”.