Dr Colman Noctor: Parents feel 'put on trial' to access disability services

Difficulties navigating support system make life all the more difficult for families of children with additional needs 

Picture: iStock 

When I spoke to disability advocate Tom Clonan last year, I asked him how he, and other parents, found the time and energy to be strong advocates for their children. Tom replied: 'Parents of children with disabilities have no choice but to become advocates because they have to fight for every scrap of support they get... Nothing about having a child with additional needs is easy, but it is made so much more challenging by a system that is so chronically difficult to navigate'.

That nothing is made simple for children with additional needs is true for so many families. I have two autistic nephews, and I have seen my sister fight to secure whatever supports she can to give her boys the best opportunities for a decent quality of life. This has involved sending video clips of the level of challenging behaviour she has to manage daily and pleading with service providers, administrators, and TDs to help to get her the support she needs.

The pandemic has been incredibly hard for families with special-needs children. Many allied professionals involved in therapeutic roles with these children were redeployed to contact tracing teams, breaking the continuity of the services. School closures further compounded difficulties.

When I felt sorry for myself when homeschooling my three children during lockdown, I quickly got a dose of perspective when calling my sister. Her eldest boy, who is non-verbal and requires full physical care and has a catalogue of challenging behaviours, was deteriorating by the day. Support services and respite periods were cancelled regularly. Also, the boys' schools were closed for long periods. School is more than just an educational environment for children with additional needs, it is an essential care environment. The loss of access to this service proved a huge challenge to many parents across the country.

Ongoing lack of services

 Last week, Inclusion Ireland published its research findings into Progressing Disability Services, a national programme set up to ensure support services for children with additional needs are equitable and consistent. The Inclusion Ireland review of this initiative highlighted an ongoing lack of services for children with disabilities and additional needs.

The study explored the parental experience of the PDS for children and young people and collated the responses from more than 1,000 families across Ireland. The key findings revealed that more than 50% of the families surveyed had not received any service, despite being in contact with support services. Other parents (85%) reported that they have waited or continue to wait for more than a year, with a further 27% waiting two to four years, with 16% waiting four to six years and 5% for six years or more. Almost half of the families surveyed cited difficulties with communication from the services and a significant lack of clarity concerning plans and time frames for PDS.

For those fortunate to access these services, 19% had difficulties, highlighting a lack of frequency of interventions, problems with staffing levels and lack of liaison with schools or other services. This report card is not very reassuring when we consider that the PDS is a relatively new iteration of national support services, which was reconfigured 11 years ago.

This reconfiguration aimed to ensure that children had fair and equitable access to services no matter where they lived. Before this, your home address determined the quality of service provided, sometimes colloquially referred to as 'the postcode lottery'. Some areas in the country were very well developed, whereas there were other areas where services were either very poor or non-existent.

However, rather than bringing services up to the highest level or standard that existed previously, which would have been deemed 'good', the worry is that the services across the board are now uniformly poor. This is not ideal when the lowest common denominator sets the bar.

Pressure on parents 

This apparent drop in the quality of services may well be blamed as a result of the pandemic but from our family's personal experience this may not be the case. My sister's eldest boy received vital support services such as speech and language therapy and occupational therapy from the HSE when he was very young. Though she had to scale a mountain of bureaucracy and doorstep TDs, she could secure some one-to-one support for her eldest boy. This was delivered prior to the reconfiguration 11 years ago. However, her experience with her younger son was through the reconfigured model and was very different. There is a four-year gap between the boys (currently aged 14 and 10), and instead of receiving one-to-one support like his older brother, my sister was asked to attend workshops with up to 40 other parents where they were given instructions about how to help their child at home.

 I understand the benefits of 'give a man a fish, feed him for the day, but teach a man to fish and feed him for the rest of his life'. But I do not think this proverb fits in the case of a parent of children with additional needs. It seems unrealistic to ask a parent of two profoundly autistic children to be a speech and language and occupational therapist in addition to the role of primary carer.

The Inclusion Ireland report seems to confirm what many of us in the field would have suspected: that the support services for children and families with additional needs are not fit for purpose. Many of these children have complex needs and require specialised and intensive support to live as fruitful lives as possible. The needs of these children should determine the service design and not healthcare economics. Of course, the increase in numbers of children being diagnosed with ASD in recent times is a factor, and the public purse is not a bottomless pit, but the long-term cost of corner-cutting will be far more than the cost of early intervention.

Although there is no clear front-runner in terms of international service delivery, from several Canadian studies, the evidence points to the workload and caseload of therapists and the ease/ promptness of access being a critical factor in their success.

I appreciate the decision makers' argument that 'you can't build houses overnight' and equally you cannot build disability services overnight. However, the access route to support could be made less demanding. Many parents report that accessing resources is like being 'put on trial', having to prove your child is entitled to support. For many parents of children with additional needs, getting through the day is a battle, and the least we could do is make the access to services they deserve and desperately need less cumbersome.

• Dr Colman Noctor is a child psychotherapist