This is a tale of bad planning, mismanagement, and downright incompetence perpetrated on the most vulnerable in Irish society and overseen by the two men with the highest paid salaries in the public sector. 

Progressing Disabilities is a program established by the Health Service Executive (HSE), the objective of which was to provide a fairer way to deliver services for children and young people with disabilities. 

It was a laudable objective where professional support would be based on a child’s needs rather than on their diagnosis, and where children and families would be able to access services available wherever they live. 

The reality, however, is vastly different and has become a surreal nightmare for those caught in what to them feels like a plotline from a Fellini movie.  The extent of this frustration is evident in a report published this week by Down Syndrome Ireland.

That the way services were delivered needed to change is not in dispute. Based on individual needs, disability teams were established in an ad hoc way across the country. 

Funding was given to organizations dealing with specific disabilities which then provided services for children with that particular disability only. This meant that in one area, there may have been excellent services for some children with a particular diagnosis and little or no service for children with a different diagnosis. 

However, in deciding on change, no one envisaged that services would deteriorate and certainly not become non-existent as has happened in certain areas. 

In planning this new approach, the HSE missed the point completely.  The issue was and continues to be a lack of resources and huge caseloads. Internal and external consultation before its implementation was also negligible.

Some of the obstacles facing the new configuration and the saga behind it were highlighted by me in the Irish Voice in October, but the effects are just now becoming crystal clear and it’s a shameful tale. 

Down Syndrome Ireland conducted a survey of 433 members with a child aged up to 18, representing every health district in the country.  The importance of early intervention for this particular cohort cannot be underestimated. 

The first years of life are a critical time in any child’s development when they attain the basic physical, cognitive, language, social, and self-help skills that lay the foundation for future progress. This is doubly true for children with Down syndrome who face significant delays in their development.

The experience of the families surveyed with Progressing Disabilities has been dreadful.  There is no area in the country where children are getting access to all of the necessary treatments they need to support them to reach their potential. This would include speech and language, physical therapy to improve muscle tone, and occupational therapy that helps children develop and master skills.  

More strikingly, the report shows that almost half of all the children received none of the recommended supports of any kind in the last year.  In relation to speech and language, the average number of sessions across the age groups was five per year. Best practice for people with Down syndrome would involve multiple sessions each week, and research shows no benefit with current treatment levels.

One father put it quite eloquently when speaking to the Irish Voice, stating that if his son broke his leg ambulances, doctors and surgeons would be available to treat him, but that help for the most important skill of all, the ability to communicate, was non-existent. 

Another mother told of how in her local special school 17 children have had no multi-disciplinary input in the last two years.  “A shocking lack of service” is how she described it. 

The reaction by other parents quoted in the report to the level of service has been equally scathing. One mother declared, “They are just rearranging the deck chairs on the Titanic again...nothing ever improves. I think families have completely lost faith in the ability of the HSE to offer any services.”

Another said, “It’s an absolute joke. The system is beyond repair.”

Perhaps the mood of families is best summed up in this observation: “Disheartening, disrespectful and disgraceful lack of service from the HSE. A violation of our children’s right to access necessary and vital services.”

These comments give a lie to government statements that suggest that there is nothing to see here and that temporary setbacks have now been fixed. 

Mind you, some representative organizations for people with disabilities must take a portion of the blame as they have not brought people onto the streets in protest, preferring cozy meetings with officials which generally end up with statements of the “things will get better” variety.

Those fighting for a better deal for people with disabilities look enviously at the American model based on a rights-based approach thanks to the Americans With Disabilities Act and related laws. Ireland has its UN Charter of Rights for People with Disabilities but its implementation is painfully slow, another indicator of government disinterest. 

Every day is vital in terms of dealing with developmental delays of children with Down syndrome, and losing out on these necessary therapies has lifelong negative consequences.

The HSE has bungled the implementation of Progressing Disabilities.  Covid had an additional impact with staff redeployments, 

However, project management 101 should have taught them that to introduce a new service nationally without first ironing out the inevitable bugs was a crazy approach destined for failure.  Where was the strategic planning and leadership that has led to such disastrous consequences which are not just confined to those with Down Syndrome? 

This leads us to the two best-paid people in the Irish public sector. The head of the HSE Paul Reid was remunerated to the tune of well over $500,000 U.S. dollars in 2021, while the secretary-general of the Department of Health, Robert Watt, took home some $330,000. 

Watt has a reputation of being pugnacious with an ability to cut through bureaucracy and get things done. With Progressing Disabilities, he has an opportunity to really earn that reputation.