THE HSE has been accused of failing children and adults with Down Syndrome due to a lack of basic services in Donegal.
This week we spoke to families who have been left with little or no access to HSE speech and language therapy, physiotherapy and occupational therapy who are growing increasingly concerned that their children are being left behind.
Ann Marie McHugh from Rathmullan has a two year-old-daughter with Down Syndrome. She said her biggest fear is that she will fall so far behind she will not be able to catch up.
“You feel as a parent you are letting them down by not getting them what they need,” she said.
“When my daughter was born and she was diagnosed with Down Syndrome they said there is services there but when you ask when they should start nobody will give you a straight answer.”
Ann Marie considers her self lucky because her daughter has been able to visit a physiotherapist but many others have not.
She feels the HSE is using Covid-19 as an excuse why these services are not available and thinks Donegal politicians should be doing more to address the problem.
“They are elected by us to help us and they should be shouting from the roof tops,” she said.
Like many other parents Ann Marie is very thankful for Donegal Down Syndrome which provide vital supports such as swimming classes, free speech and language therapy for all members, heavily subsidised therapy and counselling services.
Gina Grant, PRO of Donegal Down Syndrome, said they try to provide services for the whole family with care from the cradle to the grave.
They support over 180 families with members ranging from a few months old to 57.
For their younger members access to speech and language therapy, occupational therapy and physio is crucial in their early years while adults are missing out on respite and day services to assist with independent living.
“The HSE is failing all age groups and they have been for a long time. There is no accountability within the HSE,” said Gina.
“If you have a child that has gone from three years of age to six without any intervention or therapy it will impact behaviour, education, ability to communicate and live independently.
“There is not an age group that isn’t affected by the HSE’s lack of services. The HSE don’t seem to be upping their game and it seems to be worsening from what we are hearing from our members.”
She said for adults not having full access to day services is leaving their members feeling depressed and anxious because their life is not what it had been and the supports are not there.
Gina believes the lack of services is due to a combination of Covid-19, bad management and a lack of staff.
“The HSE is actively failing independent life choices for a lot of people with disabilities. This is having an impact on the mental health of families.
“Younger children who aren’t getting the supports they need are not going to get them years back again. The HSE is damaging their future.”
One parent told the Donegal News that their son is now six and is unable to chew food but is still waiting to see a speech therapist.
“Everything has to be mashed up. I’m told that a speech therapist should help with this but it is terrible we don’t get to see one,” they said.
Another parent said their daughter would not be progressing without the support of Donegal Down Syndrome.
“Apart from physio seven months ago my child has had no HSE speech and language or occupational therapy in over two and a half years,” they said.
“Only for the support of Donegal Down Syndrome offering us these therapies she can progress but she should still have access to all services. I have always been told early intervention is key. I know of so many families struggling and having to go privately to get assessed, have no support and are crying out for help.
“We as parents do our absolute best but we are not trained therapists and need guidance and support.”
A parent with a three year old son said their child has had no occupational therapy from the HSE at all.
“He had three speech and language appointments, one online and the other two in outpatients, the last one was June 2021. His last physio was May 2021 and has had none with the HSE.
“The first three years are so important in a child’s life and with Covid our babies have missed out. It is no excuse anymore.”
A parent with an adult daughter with Down Syndrome said respite in Inishowen is “non existent” and said her child has not received any since 2019.
“She fractured her ankle back in October and it took three weeks to get a wheelchair and we looked for extra home support which never happened. I found it very frustrating but I should be used to it now after 24 years fighting all the time for basic things.”
The HSE was asked for a response to the parents’ concerns and have provided the following statement:
Respite Services
Services are operating in the four respite centres in Donegal. However, capacity for respite delivery has been impacted as two respite centres are currently providing emergency residential accommodation to a number of people with disabilities who required emergency admission based on changes in their personal living circumstances. A plan is in place for a number of the people admitted as emergencies to transition to new residential placements in County Donegal in Quarter 2, 2022. Alternative accommodation options are currently being considered and progressed for the remaining people currently being housed on an emergency basis in the respite centres and the required resources such as appropriate housing and staff are being sought. Respite care will be resumed in all centres once residential accommodation and staffing is secured. Respite care is being offered in another respite centre on a priority basis and home support packages are being provided to people and their families as an alternative to centre based respite in the interim. The availability of suitable housing and staffing availability are challenges at present.
Day Services
Many people with a disability, including Down Syndrome access HSE and HSE funded Day Services in Donegal. People are not identified by diagnosis so services cannot give specific numbers of people with Down Syndrome attending Day Services. At present there are no older persons with Down Syndrome on a waiting list for HSE Adult Disability Day Services but if there is an identified need the service would be happy to review.
Donegal Disability Services have resumed day services in all areas post COVID-19. Day Services continue to be impacted by COVID-19 outbreaks in the community and residential services with staffing levels reduced which affects service delivery levels. Where required alternative staff options are progressed such as agency staff. At present though the availability of agency staff is very limited. Access to Day Services is given to service users in line with prioritisation criteria set out in the HSE National Framework for Resumption of Day Services.
One Day Service’s premises which has been utilised for the delivery of Day Services in the past is no longer available and is not meeting required standards. Donegal Disability Services are actively sourcing alternative accommodation for this centre with a view to full resumption to 5 days a week service for all people who attend the service. Unfortunately there is not capacity to run a 5 day service safely due to the current accommodation situation.
Children’s Disability Network Teams 0-18
Under the national HSE Progressing Disability Services programme, three Children’s Disability Network Teams (CDNTs) were established in Donegal in July 2021. This involved a reconfiguration of existing services into dedicated 0 – 18 years teams for children and young people with complex needs.
The three CDNTs have a number of vacant positions at present and although the recruitment process is ongoing it is proving difficult to fill vacancies in certain disciplines including Speech & Language Therapy, Psychology and Occupational Therapy. There is a recognised national shortage of certain disciplines which the HSE nationally is addressing.
The Children’s Disability Network Managers are currently addressing these issues and are putting in place plans to support the current caseload within the current staffing complement. The Children’s Disability Network Managers are also putting in place a proposal to attract graduates to the service and are developing additional recruitment plans. Full service delivery remains a priority for Donegal Disability Services.
Waiting lists were impacted by the redeployment of staff from therapy services to emergency COVID-19 services such as Testing Centres and the Public Health measures which impacted outpatient services. However CDNT staff assigned to COVID-19 services are now reassigned to their substantive posts in Disability Services and waiting lists for assessment and intervention are being worked through.
Primary Care provides Occupational Therapy, Physiotherapy and Speech and Language Therapy.
Waiting lists are not recorded to include a breakdown by medical diagnosis. Due to COVID-19 and staffing demands were impacted across all services.
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