Special Report: Families who need disability service 'at breaking point'

The disruption of disability services since the Covid-19 pandemic began in March has led to more stress on families who say they were already at breaking point.

Josephine Feeney from Longford, who wants to highlight the loss in services from the Phoenix Centre, with her family.

Families say there is a wide disparity between disability services, depending on where they live, writes Aine Kenny.

Some are able to get in-person physio appointments and video calls from speech and language therapists. Other families have gone without.

In some areas, physiotherapists, occupational and speech and language therapists were redeployed as Covid swabbers and contact tracers, resulting in a complete loss in services. Some individual therapists tried to support parents as best they could, but parents say it was not a substitute for in-person therapies.

These families say they are exhausted by having to continually fight for services and feel they were abandoned by the HSE.

In today's Special Report:

• A mother explains how the redeployment of staff from the early intervention team in Longford to Covid test centres has affected services for her two autistic sons.
• 'She was very lonely' - Day services for Jean Hanrahan's daughter Orla, who has Down syndrome, had been reduced because of the pandemic.
• 'It's very frustrating' - Eamon Connor from Castlebar in Mayo says the lack of respite is a serious issue for his family.
• 'They just tried to take everything away' - Eithne O'Reilly believes the HSE think families are too stressed to fight back for their badly resourced services.
• 'They told me he wasn't a priority' - Cathy Whoriskey's son Ollie has received no therapy from the early intervention team in Letterkenny since the pandemic started.

Josephine Feeney from Longford has two sons, Tristan and Kobe, who have autism.

Tristan is five-and-a-half and Kobe is three-and-a-half. Both are non-verbal and require care 24/7.

Ms Feeney's sons are attached to the early intervention team in the Phoenix Centre in Longford town. The physiotherapists, speech and language and occupational therapists were redeployed as Covid swabbers and contact tracers in March.

Meanwhile, her two boys were left without vital services during the first wave, and their therapists have still not seen them in-person.

Ms Feeney says: "In this county, when it comes to healthcare, money talks. 

If you have to rely on the HSE for anything, you're on a waiting list for years.

Her sons require a high amount of care, including feeding, washing and dressing.

Her older son, Tristan, was transferred to the school-age team from the early intervention team when he turned five in July.

Both Tristan and Kobe attend school in Killoe.

"From the first lockdown with no school until July provision, Tristan hit a massive regression. Any sounds he had started to make all disappeared, he retreated back to his room," Ms Feeney says.

"Any social skills he had developed he lost, and he became very reclusive and introverted, which was extremely hard to watch as this is the way he presented at 18 months when we first noticed something wasn't right.

"The first week back in school in July, his sounds came back and he was his jolly, happy self again. This just shows the importance of having help, whether it is school or services, but we cannot be without them again."

The speech and language therapist and occupational therapist from the school-age team have video-called Ms Feeney, and have rang Tristan's teacher. 

"But they have not seen my son in person, they can only go off a cognitive report which was not done in person, and the few bits I am telling them over the phone. It's not working, it's not practical."

Meanwhile, Kobe, who was diagnosed last December, has never received speech therapy from the HSE. "He's also had no OT since last December. 

Basically, they gave him a diagnosis and said 'go home and deal with it'.

She says parents have been offered video calls, but this doesn't work for her children who don't understand video.

"It's all being pushed back onto the parents. We have been given courses via video link, and were being told this repetitive stuff, but it doesn't connect with or apply to our children."

Ms Feeney is also teaching her sons Lámh sign language, which she learned from YouTube.

She says she is blessed that both her sons are in school. "If I didn't have that, I'd be at home with two kids with special needs that I can't explain anything to, like I was in lockdown."

She says she is lucky that her sons don't have any problems with meltdowns, and she has an older daughter, Leah, who is in college. "There are other families with younger children. During the lockdown, there were no services, and the kids with additional needs might have been lashing out.

"Their siblings were being left out, or weren't getting attention from their parents, because they had to focus on their other children more because of the lack of services. It affects the whole family."

Josephine Feeney with her family. Both her sons are non-verbal and require care 24/7.

HSE Community Healthcare Organisation (CHO) 8 said they do not comment on individual circumstances but will discuss any aspect of a client’s care with service users and their family.

CHO 8 said their therapists were redeployed to the area's six test centres in March. "This redeployment ceased in December.

"Since mid-March, face-to-face... therapy services have not been possible to most of our Service Users, due to the serious risks of transmitting Covid-19 infection to both Service Users and clinicians.

"Where possible, services continue to be provided through the “Attend Anywhere” IT platform. However, this method of service provision is not clinically appropriate for all of our Service Users."

CHO 8 added that face to face appointments for children and adults have recommenced, and they require risk assessments and are offered on an individual basis.

'She was very lonely'

Jean Hanrahan is from Quin in County Clare. Her daughter Orla Platten turned 21 in the summer. She has Down syndrome, a learning disability and she uses a wheelchair to get around.

Ms Hanrahan says if she doesn't advocate for her daughter, no one will. "She was at home [during the first lockdown] with no services. She was very lonely. She deserves full services."

She says Orla needs young people her own age around her. "What 21 year old wants to just be with their parents five days a week?"

Orla's day services, which are run by a charitable/voluntary organisation and not a HSE CHO, were brought back in May for two days a week, and were slowly increased to four days a week by mid-December.

However, Ms Hanrahan can't understand why they haven't been fully restored. "Minister [Anne] Rabbitte made disability services essential services for the second lockdown. If it's an essential service, why isn't it open full-time? And why wasn't it essential during the first lockdown?"

Jean Hanrahan and her daughter Orla Platten, from Quil in Clare. Orla is no longer entitled to physiotherapy, occupational therapy and speech and language therapy.

She points out that schools were able to reopen fully in August and were prioritized. "They say you can't compare schools to disability services, but you can. Special schools, who have children with complex needs, came back in August. So why can't adult services?"

Ms Hanrahan says the delay is "criminal" and she feels like people with disabilities are always "missing out".

"Online classes are hard enough for typically developing children, but if you've a learning disability, trying to navigate the IT and a whole new set up, it's no substitute for a proper day service."

Orla is also no longer entitled to physiotherapy, occupational therapy and speech and language therapy provided by the HSE now she's in adult day services. The family is paying privately instead.

Ms Hanrahan says it was somewhat understandable that HSE staff were pulled away from disability services to do Covid swabbing and contact tracing initially.

However, she says plans should have been put in place to recruit enough community testers and tracers earlier, to allow for a full resumption of services. "These services are vital to these kid's development. I know it was unprecedented, but the bottom line is they need to get their act together.

"Why were adult services only brought back for two days a week initially? What are families supposed to do for the other days?"

Her husband has stayed off work to look after Orla as she can't be at home on her own. "I saw the tears and stress she was under during lockdown. There was no reason why these services couldn't have come back sooner."

'It's very frustrating'

Eamon Connor from Castlebar in Mayo says the lack of respite is a serious issue for his family.

His 13-year-old son, James, has cerebral palsy. "He's our only child. He's well spoiled but well deserved."

He received July provision, which included a few hours of school per week. The family also received respite for three hours a week until the end of June.

They got no break from caring since mid-December, when their son attended St Stephen's, a respite house, for five hours.

Eamon, James and Kathryn Connor. They started avoiding watching the news so as not to stress James further about Covid.

His physiotherapist has stayed in touch, and she did a review two months ago. "That was basically just to get equipment and to see if there's been any issues, thankfully his range of motion hasn't decreased," says Mr Connor.

Mr Connor says they don't get home help hours during the day. "You've to fight and ring. The summer months are tougher, because he's at home all the time. At least with school he has structure."

James has been attending school since September, and Mr Connor says they have been very good with taking extra precautions. His school bus is also running.

"From last March to September, he was so wound up. His eczema was flaring up. 

It was the stress of Covid. He was very conscious of it, he only has a few words, but he used to cough when anything about Covid came on.

Mr Connor and his wife, Kathryn, started avoiding watching the news so as not to stress him further, but James used to read up about the virus on his iPad. "He's very aware of the situation."

James' occupational therapist has done school visits, and he wouldn't need much physio. "They have kept up the services, but there's no hands on because of Covid."

However, the family's main concern is respite, as they only have five hours a month. James works full time and Kathryn works part-time. "It's very frustrating."

He adds that there seems to be no equity in terms of respite hours, with different families receiving different hours. "There will come a time when we get older and we will need more respite. Even just to say 'take a break before you snap, or before your backs snap."

'They just tried to take everything away'

Eithne O'Reilly, from Bennettsbridge just outside Kilkenny, believes the HSE think families are too stressed to fight back, and this is why their services are so badly resourced.

Her son, Donovan, started in a mainstream school this September. Previously, his preschool disability services were with Enable Ireland.

"In March, everything shut down. My son regressed. Then they tried to roll back on July provision. I had to start a letter-writing campaign. They just tried to take away everything."

July provision helped Donovan, as did starting school, but Ms O'Reilly says it was heartbreaking that he had to graduate from preschool on his own in the front garden.

"The [Enable Ireland] bus drove past and he thought he was going back, he was so excited."

Since he started school, Donovan transferred into the HSE's school-age team for therapies, which are based in Kilcreene, and his link with Enable Ireland was severed.

"Enable Ireland shut in March, there was limited contact, and we had some speech and language online from the HSE. We were fortunate in that it somewhat worked for Donovan, but for a lot of other kids it doesn't."

While she welcomed the speech and language therapy, Ms O'Reilly says the HSE therapists can't really hear the child, or see their mouth movements to ensure they are pronouncing their sounds correctly.

She decided to pay privately for speech and language therapy, but says there are many people who have lost their jobs due to Covid who will be left without these services.

Ms O'Reilly says from speaking to other parents in Donovan's school, there are children who are waiting two years for speech and language and occupational therapy.

There are no visitors allowed to the school, meaning speech and language therapy can't take place in a school setting. "The school and therapists make phone calls to each other, but it's not the same."

She adds that occupational therapy is very difficult to get in the area, and Donovan only had one session before being discharged.

Donovan has had one in-person physiotherapy session from the HSE, and is supposed to be getting another session in January.

It is estimated that half a million people in Ireland are living with a hidden disability!#IDPWD2020 #PurpleLights20 pic.twitter.com/TvJziXqVHy

— Enable Ireland (@EnableIreland) December 3, 2020

She adds that disability services overall differ massively depending on geographical area.

HSE South East Community Healthcare (SECH) said they do not comment on individual circumstances, but will discuss any aspect of a client’s care with their family.

They also said some clinical therapists were redeployed in March. "A recruitment campaign has been underway since October for the employment of testing staff. This will assist in enabling the reactivation of therapist roles across the South East.

"There have been postponements in delivery of “face-to-face” assessment and therapy services... where possible, services have continued via the “Attend Anywhere” ICT facility.

"A series of “face to face” appointments for children/adults are expected to recommence in the coming weeks, with precautionary infection prevention control measures applied."

'They told me he wasn't a priority'

Cathy Whoriskey, a single parent from Donegal, has a three-and-a-half-year-old son called Ollie.

Ollie has Down syndrome and would work with the early intervention team in Letterkenny, but since the pandemic started, he has received no therapy from them.

"Early intervention at his age would be critical, especially for his speech. He hasn't had any one-to-one in-person therapy since February."

Ollie didn't need to see a physiotherapist very often, as his mobility was quite good. However, he isn't verbal yet, and was getting speech and language therapy before the lockdown. 

Ollie Whoriskey, from Donegal, has Down syndrome but has received no therapy from the early intervention team in Letterkenny since the pandemic started.

"He would be considered behind his peers who also have Down syndrome," explains Ms Whoriskey.

She says it made her really upset to think someone in the HSE deemed early intervention disability services as "non-essential".

"These services are so pivotal to my son, now and in future years, in helping him to be socially independent, and achieve his basic human right to be able to communicate."

She sought private speech and language and occupational therapy for Ollie in the meantime and paid out of pocket for them.

However, a few weeks ago, Ms Whoriskey heard that some face-to-face appointments were being offered to children in other parts of Ireland.

"So I rang Ollie's team, and was told that my son wasn't a priority because of the backlog of children waiting for an initial assessment."

While she agrees initial assessments are very important, she says it's just not good enough.

She says she is only a parent, and she's trying to do speech and occupational therapy with Ollie. "I'm a single parent too. The stress of thinking 'I'm not doing enough'."

Cathy Whoriskey who paid out of her own pocket for private speech and language and occupational therapy for her son Ollie. 

Ms Whoriskey told the HSE she wasn't taking no for an answer, she was offered the Hanen programme via video call, which teaches parents how to communicate with their children who have autism. However, she says the connection can be bad, and it's hard for parents to concentrate when kids are in the background.

"It's a great programme but [the delivery] is not ideal. I felt like the HSE was trying to pacify me."

She says other parents might be afraid to speak up, leaving them with no services at all.

She works as an emergency nurse, and she has no choice but to work and come home to Ollie. "To me, sending him for therapy in a building that's not even in the hospital was not a risk. I was there for patients when they needed me, now someone needs to be there for Ollie. Why is this not a priority?"

In response, HSE CHO 1 said they do not comment on individual circumstances, but will discuss any aspect of a client’s care with their family.

Ollie Whoriskey. "Someone needs to be there for Ollie. Why is this not a priority?" asks his mother.

Clinical therapists were redeployed to Covid test centres in CHO 1 from March, and this practice ceased in Donegal in December.

"Since mid-March, face-to-face service provision has not been possible to most of our Service Users due to the serious risks of transmitting Covid-19 infection," said CHO 1.

"Where possible services continue to be provided through the “Attend Anywhere” IT platform."

The HSE also said they recognised that some families prefer face to face appointments. "In the current climate face to face sessions require the completion of a risk assessment and are offered on an individual basis in CHO 1."