Addressing levels of care

The level of care and therapy that children with Down syndrome get seems to depend on their home address, writes SHEILA WAYMAN…

The level of care and therapy that children with Down syndrome get seems to depend on their home address, writes SHEILA WAYMAN

WHEN FRANK and Aisling Scally were expecting their second child two years ago they needed to move from their two-bedroom house on the North Strand in Dublin 3 to somewhere bigger. They were looking to be closer to either his family in Kildare or her family in Dalkey.

But for them the deciding factor was not going to be scenic location, property prices per square foot or ease of commute. Instead, the priority was to see what services were available locally for their eldest child, Ciaran, now aged three, who has Down syndrome.

They met a social worker attached to the Carmona Services in Glenageary, south Co Dublin, and were “just amazed by the difference” in what was available if you lived in its catchment area.

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Up until then, they had been happy enough with the services Ciaran had been receiving at St Michael’s House in Ballymun.

“We thought that was just the norm,” explains Frank as he sits in the light-filled, spacious, open-plan extension that they have built at the back of the small terraced house they bought off Kill Avenue in Dún Laoghaire.

Red-haired Ciaran, who is home with chicken pox, wanders contentedly between his two parents, delighted to have them to himself, as his 15-month-old sister Fia is at the creche.

They had no idea that where you live seems to determine what level of early intervention services children such as Ciaran receive during that vital developmental period of age zero to five years.

The Republic has the highest rate of Down syndrome in Europe, at one in 550 live births. It is a chromosomal disorder caused by an error in cell division that results in an extra 21st chromosome.

In some areas, early services for children with Down syndrome include regular physiotherapy, speech and language therapy, occupational therapy and play therapy; in other places therapies are provided less frequently, if at all, which means the children miss out or the parents have to pay for private services to compensate.

The Down Syndrome Centre (DSC), a charity set up by parents to establish Ireland’s first dedicated centre, is concerned about reports by parents of newly born children with Down syndrome who are being told by their local provider that they cannot get any early intervention services.

“The service provider in question states that they ‘continue to be at full capacity’ and while in discussions with the HSE to extend their capacity, ‘are unable to say at present when they will be in a position to offer places’,” explains DSC spokeswoman Sheila Campbell.

“By effectively having the door shut in their faces, parents are being left in a limbo state of not knowing the most basic information about the disability; not having a support network to tap into of other parents while all the time knowing that as the weeks pass, their child is missing out on levels of care that could affect his or her later life development,” she points out.

The DSC is drawing up guidelines for parents on what services they should seek for children and also what they should be doing with them at home.

The HSE has recognised the need to increase the level of consistency and standardisation in the way early intervention services are delivered, a spokeswoman says. “There is also a need to evaluate the effectiveness of early intervention services across different providers and across different geographical areas.”

To address this, the HSE is working on an agreement for a standard framework for the delivery of early intervention services, in consultation with staff, managers and families, she explains. It aims to start implementing such a framework before the end of the year.

Frank and Aisling remain in touch with a small circle of parents they knew from St Michael’s. “There were five kids born around the same time,” explains Frank. “Ciaran has been walking for six months now and they’re only starting to walk.

“There’s a marked difference between Ciaran and the kids he left behind,” agrees Aisling. “We feel blessed.”

Ciaran had been getting physiotherapy about once a month in Ballymun, but there were big gaps due to maternity leave and sick leave, for which there is no funding to cover.

He also got two eight-week courses of speech therapy. As soon as they moved, he could go to a special pre-school once a week and the key worker assigned to him visited them at home every fortnight with either a physiotherapist or a speech therapist.

They know of another couple in a similar position, who let their home out in Lusk, north Dublin, and moved to rent a home in Blackrock, south Dublin, to be in the catchment area of Carmona.

Sinead Toolan lives in Glasnevin and her 27-month-old son Liam, who has Down syndrome, attends St Michael’s in Ballymun. The lack of speech therapy is her big concern. He has had only eight hours so far this year and none since April because they have been told there is no funding to fill a vacancy, so she does not know when or if it will resume. Meanwhile, she is paying €100 for a private session once a week.

“He has never had any occupational therapy although it is meant to be really important,” she says. But she has applied for it and believes he will get it in time.

His home worker is “brilliant”, she stresses, but comes for only an hour once a fortnight. “What is in place is good, it is just not enough.

“When you hear about Carmona and its pre-school, I would love to move house if I could,” she adds.

Ciaran goes to the special pre-school four mornings a week now, where he has speech therapy, physiotherapy, occupational therapy and play therapy. Frank and Aisling also do a lot of work with him at home and are given new goals every few weeks, in physio, self-help and speech.

He was their first child and it was a “huge shock” to find out he had Down syndrome. “We knew there were issues as he was very small in the last trimester, but I didn’t think it was Down syndrome as I was quite young, only 30,” says Aisling.

Ciaran has a rare type of Down syndrome, known as translocation, which occurs in about 3-5 per cent of cases. A piece of chromosome 21 breaks off and becomes attached to another chromosome.

Aisling’s brother has autism so her mother knew all about caring for a child with special needs and had also been involved with the Carmona Services. “I remember a staff member saying to me at the time, ‘Your life is still going to go forward, it is just on a different road’. It has changed our whole lives, we have had to adapt completely.”

Frank, who works in IT, cut back to two days a week and went on carer’s benefit leave, so that he could be home with Ciaran and take him to the numerous hospital appointments scheduled in his first year.

Aisling continues to work full-time for an IT consultancy, but manages to work from home once a week, while Frank also does IT work from home.

One of them, or granny, has to be on hand at lunchtime, Tuesday to Friday, to transfer Ciaran from the pre-school to the St John of God creche up the road, which his sister also attends.

They know that when Ciaran reaches school-going age, he will be discharged from the Carmona Services if his learning disability is assessed as “mild to moderate”. “It’s madness,” comments Aisling. “You struggle to do all this work and then are penalised for it.”

She is not looking forward to battling for services for Ciaran when he goes on to mainstream school. “That fills me with fear,” she admits, as her son, who is blissfully oblivious to future concerns, happily devours a packet of raisins.

** A spokesman for St Michael’s House said: “It is our policy not to comment on individual cases. St Michael’s House strives to provide the highest quality services to our service users and their families. However, in line with many other health service providers, funding is a very challenging issue for St Michael’s House and lack of resources can impact on services.”

He quotes comments by its chairman, Maurice Bracken, made this time last year: “We are experiencing a crisis. On the one hand our waiting lists are increasing and on the other our funding is decreasing. Essentially, we are in the position of not being able to provide services to parents of newly born babies with Down syndrome or other intellectual disabilities. This is an appalling and unacceptable position for parents and for our organisation to find ourselves in.”

For the past 18 months St Michael’s House has taken on nine new service users per month, mostly referred from maternity hospitals, without any additional funding, he added.

Mum had to fight for son

MINUTES AFTER the birth of Nikki Curran’s third child, the midwife noticed skin tags on the baby’s ear.

“She said ‘I am just going to call the paediatrician’, and I said, ‘what do they signify?’ and she just came over to me and put him in my arms and said, ‘I think he is Down syndrome’,” recalls Curran four years later. “It was like a bolt out of the blue.”

After she returned with baby Tim to their home in Celbridge, Co Kildare, which is directly opposite the local provider of services for people with intellectual disabilities, St Raphael’s, the public health nurse attached to the area medical officer came out to see them.

“She was a very nice woman and I got on very well with her. She took my history and his history and I never saw anybody else from St Raphael’s again for quite a long time.”

Tim was born on March 17th, 2005, in Holles Street and, coincidentally, another mother with the same Christian name, Nicky Lynam, who lived just four miles away in Lucan, also gave birth to a child with Down syndrome in the Coombe. A mutual acquaintance put them in touch and they met about seven months later.

“She told me she was attached to Stewarts and all hell broke loose then because I heard what she was getting out at Stewarts and I was getting absolutely nothing.”

Lynam told her that when her daughter Robyn was about two months old, they had met a team of therapists at Stewart’s providing early services who described what part they would play in her daughter’s life.

“I was kind of going, ‘I’ve met nobody’. Her programme had kicked in already. I rang Raphael’s and asked for a meeting.”

She remembers being told, “we decided Tim was a cardiac baby and that services would be too early for him”.

“I was fuming at the table and said ‘that was not your decision to make, that was mine. I decide what services I’ll get; you won’t decide what services you will deliver to me. And that is the line I have taken with them and still take with them to this day but they don’t get that.”

In fairness, she says, Tim was in and out of hospital quite a bit, having had two cardiac operations, but says St Raphael’s did not even offer any services. She was taking him privately to Naas hospital for physiotherapy, not knowing there was a free service on her doorstep.

She says she had never been invited to a parents’ support night or anything like that. “I did not know I was going to have to play differently, talk differently, work differently with him. I didn’t know anything about this. I did not know to look for stuff. You don’t know what they need.

“When I knew what was going on four miles down the road, I would have done anything. I would have bought somebody’s house or even an address!”

Once Curran started demanding services, Tim began to get physio and play therapy towards the end of his first year, but services were patchy. At one stage she was told he probably needed a bit of occupational therapy and she asked that he be put down for such a therapist.

“The reply was ‘we don’t have one’.” She realised then that it was going to be a matter of fighting: “I started writing letters”, to the HSE and politicians.

“Because I fought, I did get a lot of my services but there is nothing holistic about it,” she says. “Each therapist does his or her bit.”

Tim now gets three or four therapies every two weeks, some at home, some he goes out for.

“Raphael’s, in fairness, did try to step up to the mark and they are trying to change their model,” she adds.

Invited by The Irish Timesto comment on issues highlighted by Curran, Clare Dempsey, the director at St John of God Kildare Services, which looks after St Raphael's, says: "The service, working in partnership with families and the HSE, has secured additional staffing resources to respond to the needs of a growing number of children in north Kildare presenting with intellectual disability in the 0-6 years age group.

“Over the last three years, an additional psychologist, speech and language therapists, occupational therapists and a social worker have joined the early services team,” she adds.

What disabled children need: and what they actually get

SINCE JUNE 2007, children aged under five with disabilities have a right to an independent assessment of their health and educational needs, an assessment report and a statement of the services they will receive, under the Disability Act 2005.

However, while the type of services may be specified, no level of delivery is guaranteed. Staff shortages mean many of these children will not get the recommended help.

“I think it is a cruel act to give a family a report telling them all the services their child needs and then telling them that they are on a waiting list for services,” says early intervention specialist Ann Haig Wheeler.

She will be over from the US this week to give four half-day seminars in Mullingar and Dublin to parents and professionals caring for a child with an intellectual disability.

Now working at a hospital in Kansas, she has first-hand professional and personal experience of the Irish services, as she worked here for nearly 10 years, during which time she gave birth to her daughter Allie, who has Down syndrome and autism.

“I identified Allie as having autism from an early age but the gate keepers at her service refused to even entertain an evaluation,” she says.

“It wasn’t until I moved to another part of Ireland and therefore into another service that the psychologist spotted the autism straight away and ordered the psychiatric evaluation. Thus, my daughter missed vital supports and services due to mismanagement.”

Allie received physiotherapy until she walked, no occupational therapy, just six sessions of speech therapy a year and none after the age of five.

US legislation, introduced in 2004, gives children with Down syndrome the right to full developmental evaluations from birth and to receive the therapies identified as needs in the evaluations. She sees the Disability Act here as a pre-cursor of that.

Haig Wheeler points out one upside to the lack of services here. “Irish families become experts in Down syndrome before the child enters school and, as a result, the children really flourish. Any therapist will tell you that the whole purpose of therapy is to train the parents because they are the people with the child the most.

“Irish parents seem to get there on their own,” she adds. “But the point is they shouldn’t have to.”

Ann Haig Wheeler's half-day seminars, organised by the Down Syndrome Centre, will focus on children aged 0-3 and 3-6. They are being held in the Mullingar Park Hotel this Thursday (June 4th) and in the Regency Hotel, Dublin on Saturday (June 6th). For further information, see www.downsyndromecentre.ie or tel: 01-661 8000.