‘Scared for their future’

“Little has changed” to better the situation faced by hundreds of children with disabilities and their families across Cavan in the year since a group of parents first appeared before the Oireachtas Joint Committee on Disability Matters to campaign for better supports.

The claim by one frustrated mum comes as figures show one in two jobs on a team to support children with complex needs remain vacant.

According to the Cavan Monaghan Parents Committee there are just 1.5 physios to cater for 670 children in Cavan, forcing parents with no option but to become “part-time therapists”.

“I am not a campaigner, or at least I never set out to be. I’m just a mum,” says Linda Whitmarsh, co-chair of committee. Their current campaign is to have the 2005 Disability Act amended to give a statutory footing to the delivery of required supports for children with disabilities.

As well as that they want the Irish Government to “stand up” and finally ratify the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which exists to protect and ensure the human rights and fundamental freedoms for all disabled persons.

Linda is mum to three boys, two of whom have additional needs including one with Cystic Fibrosis (CF). She feels, if anything, staffing in the disability sector in Cavan for complex cases has “gotten worse” over the past 12 months.

“I am tired. I’m not angry. I’m frustrated. And I feel unsupported. I’m very scared for their future,” says Linda of her children when speaking to the Celt alongside another committee member, and mother of a child with additional needs, Catherine Smith.

The primary function of the Disability Act provides for an immediate assessment of need for every child who requires one. Legally, this must be provided within six months of application. The problem, Cavan Monaghan Parents Committee and those like them point out, is that the follow-up service statement, which outlines what therapies are needed and sets out a timeframe for the provision of same, is “not worth the paper it’s printed on”.

Back when the committee first appeared before Oireachtas members, more than two thirds of their number had children who had been waiting two years or more for services, four had been waiting one to two years and one had been waiting a year.

One child had been waiting seven years for physiotherapy in primary care. Another family were told their child's needs were deemed “not complex enough” for a Children’s Disability Network Teams (CDNT), but yet too complex for primary care.

In Cavan, children with additional needs considered ‘complex cases’ are referred to the CDNT and attend Enable Ireland. Linda claims at present, such is the demand, families are not being given a date due to a lack of available therapists. “It says ‘To Be Confirmed’. So the Act, as it is, is failing these children. It’s failing families.”

Staffing issues in the sector, the committee notes, are “everywhere”, and are not unique Cavan. But they claim there is an element of “postcode lottery” too, with families being sent from their own counties to other areas due to land boundaries close by and to entirely different community hubs for access to services.

Vacancies

According latest figures, there are 737 job vacancies across 91 CDNT nationwide, with one area encountering a 65 per cent vacancy rate (Donegal).

The area known as CHO 1, which includes Cavan/Monaghan, Donegal, Sligo/Leitrim/West Cavan, is currently “second worst” with over 50 per cent.

The issue predominantly affects ‘Section 39’ workers, explains Linda. These provide services and other supports under service level agreements on behalf of the HSE. But the committee has found that pay differences and “unequal contracts” continue to be a “huge issue”, and believe this needs addressing immediately before the overall picture can be fixed.

“If you work in Monaghan on the CDNT, you’re on 11 per cent more an hour more than in Cavan, two weeks more holidays, more maternity entitlements, and a bigger pension. So there is no incentive.”

Of the 1.5 physios for 670 children in Cavan, Linda says: “This is Finn”.

The nine-year-old who also has CF “has never seen a physio with Enable Ireland.”

The fallout continues. There are just four Occupational Therapists, 2.4 psychologists, no clinical nurse specialist, 2.46 social workers, 0.8 family support workers, three administrators, and one manager.

There is also only one Speech and Language therapist. “Finn is nine. Finn was non verbal until he was eight and he has had three hours of speech therapy. That was because we fought, and that’s why we’ve come together because, individually, it feels you can’t do or get anything. As a group you’re listened to more.”

What’s most frustrating for Linda and other parents is they see there is funding available for more to be done- at least 14 more staff. The total number of funded staff (including vacancies) is 28.

“Instead they’re outsourcing it all privately, at a bigger cost to the tax payer. Right now a child will get the service statement and, following that, it’s like they fall off the face of the earth. It’s victimising the child because a child with an unmet need now is going to turn into an adult who is not independent.”

Cavan Monaghan Parents Committee hasn’t yet been able to get vacancy figures at Primary Care level, but suspect that similar issues exist.

A change in the Disability Act to enshrine provision of services, the committee says, would put a definite onus on the government to ensure every child “has a right to access those supports and services”.

What has happened instead, she explains, is that parents are themselves become “part-time therapists”.

Fairness

“You could argue that, within a timeframe of 12 months after assessment, a timeframe should be in place to ensure a child has access to the services required,” suggests Catherine, mum of a four year old boy with autism.

Callum has been in the system nearly two full years since the application was first lodged. He has yet to receive a one-to-one.

Callum was completely non-verbal for the first stage of his life, and began to talk before “losing his words again”. Thankfully he has improved says his mum. “We’re doing a lot of work at home, and we’ve taken him private as well.

“There are some days, and [Callum’s] such a lovable child, but you really feel how much hard work it is to get those little gains,” remarks Catherine. “What’s so upsetting about it all is, no matter what you do, without that additional help, you’re not seeing the process you know your child is capable of.”

Her biggest concern now is that soon Callum will attend school. “I don’t know if I’ll even be able to send him or not at the moment. I feel, if he had intervention when we first pushed this, the more you can get early on, the less you’ll need it further down the line, which is taking away from another child then entering the service.

“If Callum had everything he should have had, obviously you still have to put the work in at home, but hopefully when it comes to school age, he wouldn’t need an SNA, or a unit, or as time goes on he wouldn’t need speech and language [therapy], or OT.”

Linda agrees that early intervention is “key”. But she says there is none in Ireland at present without going private. She spares a thought for the families of children with additional needs who cannot afford such supports. “Where is the fairness?” she asks.

Frustration

Linda, who describes herself as an “ordinary mam”, says the committee was partly set up out of “sheer frustration”. The other guiding factor was an opportunity to reach out to others to keep them updated on developments, share information and experiences, and support one another.

The Whitmarshes are no strangers to taking on the system. In 2016 they campaigned successfully for son Finn to get the drug Orkambi under the Drug Reimbursement Scheme.

Linda says that Finn “because he was so sickly growing up, a lot of his developmental milestones such as speech came slower”.

He was diagnosed as having additional needs aged five years, only after the Whitmarsh family had him assessed privately. He has still not received a public assessment and was refused early intervention more than half a dozen times.

Linda says the lack of “continuity” is failing Finn, who regressed further during the Covid-19 pandemic.

Their eldest boy Liam (11) meanwhile attended Enable Ireland having experienced a speech delay. He was eventually discharged to community care with “queried dyspraxia” aged six. He had been waiting close to four years for an assessment. “No definite diagnosis. They call these progressive services but, to me, it’s not. It’s regressive.”

Once again, Linda says her family are not worried about diagnosis. What concerns them most is the lack of access to services going forward especially where, with increased demand, the private sector has become inundated trying to plug gaps.

Linda, a qualified nurse, is currently on career break to care for her children. Her husband Ronan also works in the health sector. Together they have spent close to €15,000 on assessments and private therapies and that bill is ever growing.

Linda says she “loved” her job and “loved working”, but to ensure her children get the best care possible, she had to take the difficult decision to apply for leave.

She tells the Celt heavy-heartedly that “every day feels like a fight” when a parent of a child with additional needs or a disability, and when chasing services on their behalf.

“When you have a child like that, all you have is hope. But constantly fighting leaves you hopeless.”